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My name is Vikram I am 27 years old  Nationality India Dignosis cml age 16 10 year ago.... Gleveek (intneeb) 400 MG per day After 3 years Change does Gleveek (intneeb) 600 MG per day.... Current does Gleveek (intneeb) 600 MG per day No changes because report good undertaketable My question is I can merried? Cml cp (chronic pase) HOW MANY YEAR SERVIVE? Life time I control cml chronic pase? Ya deases automatically cml chronic to aucut phase transfer in future? Merried normal girl ya merried cml girl Merried normal girl no question But merried cml girl In future Complications in babies....? SPERM Fertility problems? Cml completely cure possible? Miristen 126 trails successfully in mice Human trails date and research? In Google no information available miristen 126 trails? And trails date? In 2019? Please reply I can merried? Life time control cml in chronic phase possible? Does Gleveek (intneeb) 600 MG per day After ten years treatment I have side effects little hair fall Problem Please reply

My name is Vikram  - Welcome Vikram!
I am 27 years old boy
Nationality India

Dignosis cml age 16
10 year ago....

Gleveek (intneeb) 400 MG per day

After 3 years
Change does Gleveek (intneeb) 600 MG per day....

Current does Gleveek (intneeb) 600 MG per day

No changes because report good undertaketable

My question is I can merried?  Yes, many of us are married.  Most of us were probably married before we were diagnosed with CML.

Cml cp (chronic pase)

HOW MANY YEAR SERVIVE?  Normal lifespan for most.

Life time I control cml chronic pase?
Ya deases automatically cml chronic to aucut phase transfer in future? 
Yes, it seems most of us will remain in chronic phase and not progress to acute phase if we continue TKI therapy.

Merried normal girl ya merried cml girl

Merried normal girl no question

But merried cml girl
In future
Complications in babies....? 
Yes, it is believed that a woman should not become pregnant while on TKI therapy.

SPERM
Fertility problems? 
Sometimes, here is a quote from a research study:  Impact of Imatinib on the Fertility of Male Patients with Chronic Myelogenous Leukaemia in the Chronic Phase.

https://www.ncbi.nlm.nih.gov/pubmed/28791527

"One previous case report from our hospital confirmed the
present finding of the negative effects of imatinib on sperm
parameters in CML-CP patients. A male CML-CP patient
who had received imatinib treatment for 4 years, did not discontinue
imatinib treatment at the time of conception. This
patient exhibited a lower sperm survival rate (43.54%), and
reduced sperm activity (16.7%). However, he successfully
conceived, and a healthy baby was born after a normal pregnancy
[24]. Follow-up on the baby was performed 36 months
after birth, and the results demonstrated that the baby grew
normally and remained healthy. Similar instances of the ability
of male CML patients to conceive during imatinib treatment
were reported, despite declines in sperm count, survival rate,
and activity [25, 26]. However, more clinical studies are needed
to evaluate the effects of imatinib on conception and fertility
in male CMP patients.
In summary, this investigation suggests that imatinib crosses
the blood-testis barrier and reduces sperm count, survival rates,
and activity in CML-CP patients. However, reproductive organ
structure and sex hormone levels were not affected. Future
studies should elucidate the mechanisms of imatinib penetration
of the blood-testis barrier and its effects on conception
and fertility."

 

Cml completely cure possible?  Yes - possible - but not for everyone at this time.

Miristen 126 trails successfully in mice

Human trails date and research?  Waiting

In Google no information available miristen 126 trails? And trails date?

In 2019?  Probably no definite results for several years.

Please reply
I can merried? 
Yes

Life time control cml in chronic phase possible?  Probably

Does Gleveek (intneeb) 600 MG per day

After ten years treatment
I have side effects little hair fall  -  Don't worry about it.
Problem

Please reply

My report

20 11 undetectable
2012 undetectable
20 1 3 undetectable
2014 undetectable
2015 undetectable
20 16 undetectable
20 1 7 undetectable

CML CP (CHRONIC PASE)

DIGNOSIS AGE 16 (2008)

CURRENT DOSES

GLEVEEK (INTNEEB) 600 MG PER DAY

DISCREASES DOES 600 TO 400 POSSIBLE?

UNDETECTABLE MEANS?

Vikram,

You are taking too high a dose of Gleevec and can certainly reduce to 400.

AND ...

in fact, you are a candidate to stop taking Gleevec completely since you have been PCRU (undetectable) for YEARS (i.e. more than two).

if you feel comfortable mentally with stopping treatment - you should give consider trying. You may very well be functionally cured. Your body along with Gleevec may have outlasted any CML remaining. Talk with your doctor about a stopping trial where you test your PCR once a month and take no drug. I do recommend that if you do this that you reduce dose first gradually so you can wean your body off Gleevec.

Congratulations!

Hi Vikram,

First, congratulation on being PCRU .. 'UNDETECTED' for so many years. You are in a very good shape. Scuba rightly suggested that you can talk to your doctor regarding dose reduction or sropping entirely.

By the way I am also an Indian .. not in India right now. Got diagnosed a year back and on generic Imatinib. Still a long way to go to be undetectable like you. I am married to an Indian tigress :-) who stood and fought by my side all along. Having your life partener beside you gives the extra strength to confront the devil. However, right education about this condition is necessary before going into a commitment like marriage.

My doc told me not to worry about having children. If we plan we should just consult him beforehand. So, I would request you not to worry too much about future. Just enjoy what life offers.

God bless you my friend.

Thanks for your reply...... Scuba and sid35

Life time control cml-CP possible on lower dose of imatinib

Undetectable life time possible? ( Lower dose of imatinib)

Life time control cml-CP possible on lower dose of imatinib

Undetectable life time possible? ( Lower dose of imatinib)

Treatment free remission (TFR) LONG TIME POSSIBLE?

Vikam, I spent 10 years on 400mg imatinib. I then reduced to 200mg for a year and remained at 0.000% PCR or very close. I have recently stopped taking imatinib and I am having PCR test every month. There is a good chance I will achieve TFR. As Scuba has said it is certainly worth talking to your doctor about reducing dose initially. UK research has shown that the chance of TFR seems to be improved if the dose is reduced in stages rather than stopping from a higher dose. I hope this helps

Thanks for your reply AlastairC....

I ask my doctor next month to reduce the dose

My life's last SEVEN years is my health is good .

Thank for drugs (gleevec)

Last 7 years my report undetectable (600 MG gleevec (imatinib) dose)

But many side effects

I worried about my future and merrier.

I worried about my future merried life

I'm worried about future drug failures

Please reply my 3 questions

Please..........................

life-time control disease less dose possible?

Life time undertake table less dose possible?

HOW LONG TFR POSSIBLE? MAXIMUM YEAR?

Any latest research or update on

CURE.....
Long time TFR possible
Long time control disease low doses

PLEASE REPLY.....

HELLO FRIENDS.......

PLEASE REPLY........

I ask my doctor next month to reduce the dose

My life's last SEVEN years is my health is good .

Thank for drugs (gleevec)

Last 7 years my report undetectable (600 MG gleevec (imatinib) dose)

But many side effects

I worried about my future and merrier.

I worried about my future merried life

I'm worried about future drug failures

Please reply my 3 questions

Please..........................

life-time control disease less dose possible?

Life time undertake table less dose possible?

HOW LONG TFR POSSIBLE? MAXIMUM YEAR?

Any latest research or update on

CURE.....
Long time TFR possible
Long time control disease low doses

PLEASE REPLY.....

life-time control disease less dose possible?  Yes, my suggestion would be to talk to your doctor about reducing your dose to 300mg per day.

Life time undertake table less dose possible?  Probably, given your excellent response to TKI therapy so far.

HOW LONG TFR POSSIBLE? MAXIMUM YEAR?  Unknown,  we're still learning about TFR and most of us haven't achieved it.

 

I will repeat Sid's wise counsel to you:

My doc told me not to worry about having children. If we plan we should just consult him beforehand. So, I would request you not to worry too much about future. Just enjoy what life offers.

God bless you my friend.

Thanks for your reply....

Thanks for cml support......

I like this site because most knowledgeable person answering my questions

Ones again thank you......

But

One Question.....

My private information (name, Gmail account, my disease ) is safe in this site

Please reply...........

Yes, your information is secure. Only the site administrators have access to your contact information.

Please let us know when you are going to be married, so we can celebrate with you!

Who is Merried after Diagnosis in this site?

Hello Vikram,

As CML is a rare disease and is usually diagnosed later in life than you, most who are married with CML were probably already married when they were diagnosed.  According to the American Cancer Society, "the average age at diagnosis of CML is around 64 years.".  When diagnosed I was 48 and had already been married for 25 years.  My oldest daughter will soon be 27 years old.

You might try some of the Facebook groups.  If you are concerned about anonymity, perhaps you could set up an online alias.

There are very few people in the world who are your age with CML. I wish you well in finding answers to your questions.

Kirk

Sorry....

Same question.....
but different style....

life-time control disease less dose possible? How many percentage (%)
( please reply)

Last 7 years my health is good. I hope health better and better in the future year of my life

Appreciate all opinions and replies

Please reply....................

0.1% is considered the “safe zone” where the disease can be managed for a normal length of life.

If results are consistently around 0.01% for a length of time, reducing (or even stopping) medication can be considered.

David. 

Hi devid thanks for your reply

I know but

I worried about my future and merrier.

I worried about my future merried life

I'm worried about future drug failures.

LIFE TIME CONTROL DISEASE POSSIBLE (PERSENTAGE)?

LAST 7 YEARS DISEASE UNDETECTABLE BUT IN FUTURE?

HOW MANY YEAR undetectable possible?

CML IS DARK SECRET OF MY LIFE

ONLY MY FAMILY AND DOCTOR KNOW

( secrets is my strength)

Diagnosed 2008 (age 16)
After 3 years report not good.
Doctor increases dose 400 MG imatinib to 600 MG

Last 7 years
Report undertaketable (every year undetectable)

Undetectable mens ? (good control)

My check-up time is next month ... One time in 4 months.
Last time I told doctors to reduce dose

He said no....( August 2018)

Same question ( April 2018)
Same answer no....

Maybe one of the reasons you are so scared is because you are keeping your diagnosis of CML a big dark secret. It’s a big secret to hold to yourself and limits the support you can get from other people especially when you are having a bad week. I’m sure you are worried that telling people may limit your chance of getting married  but I hope you plan to discuss this with your future bride before you marry her.  Whether people with CML choose to discuss it with others is their own personal choice but as most of us are married (Given the average age of getting CML) and probably were when we got diagnosed we already likely have a support system in place. Try not to worry so much about the future . You seem to have a very good chance of being able to cease taking meds as others have pointed out. If you worry so much you are going to miss all the good things about today. Good luck

Hi Vikram,

I think Fiona has given you some good advice.

You mentioned you had a bad report after taking 400mg for three years after your diagnosis.  What was the bad report?

Kirk

Hi kirk

After 7 months diagnosis

Report (7-2008) is

Bone marrow report : bone marrow aspirations is partially dicuted however is dshow well preserved myeloid and evythroid precursors with preserved maturation me ratio
Preserved normoblastic
Eryrhropoiesis megakaryocytes are occasionally seen pls shows Rbcs are normocytic mild and hypochromic. Wbc and platelet are adequate.

Diagnosis - as patient is known case of CML, present marrow findings are suggestive of controlled cml activity

20 0 9 and 2010 reports missing ( home files) (available in hospitals file)

2008,2009,2010 dose imatinib 400 MG per day

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA

Ration (Fusion gene copies /abl gene copies) : 0.25%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....

November 2011 :Undetectable

2012 :undetectable

20 1 3 :undetectable

2014 : undetectable

2015 : undetectable

20 16 : undetectable

20 1 7 : undetectable

After 7 months diagnosis

Report (7-2018) is  -  I'm confused about this.  Did you have a bone marrow analysis done in July 2018 or is this report from the year you were diagnosed?  If this report is from 2018, why did your doctor perform this test?

Bone marrow report : bone marrow aspirations is partially dicuted however is dshow well preserved myeloid and evythroid precursors with preserved maturation me ratio
Preserved normoblastic
Eryrhropoiesis megakaryocytes are occasionally seen pls shows Rbcs are normocytic mild and hypochromic. Wbc and platelet are adequate.

Diagnosis - as patient is known case of CML, present marrow findings are suggestive of controlled cml activity

20 0 9 and 2010 reports missing ( home files) (available in hospitals file)

2008,2009,2010 dose imatinib 400 MG per day

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA   -  I'm not familiar with this methodology.

Ration (Fusion gene copies /abl gene copies) : 0.25%  -  I'm wondering what your previous results were?  Did you have any PCR tests that were undetectable before this?  Do you know if this result had been converted to the International Scale (IS)?

After report doctor change my dose  -  The decision to increase dose was wise if you had not reached a major molecular response (MMR) since your diagnosis.

400 MG imatinib to 600 MG imatinib per day....

November 2011 :Undetectable  -  Do you know what the limit of detection is for the lab that performs your PCR tests?  For example, my lab reports it's limit this way:  "The assay has a limit of detection of 0.0069 BCR-ABL1-NCN (%) with high analytical precision at the MMR Level.".

2012 :undetectable

20 1 3 :undetectable

2014 : undetectable

2015 : undetectable

20 16 : undetectable

20 1 7 : undetectable  -  How many times in a year are your PCR tests performed?  Do you believe the lab that performs your tests gives accurate results?

If you believe your results for the last several years are accurate and you can receive PCR testing every three months, then I see no reason why you couldn't reduce your imatinib dose to 300 mg/day.  If your PCR tests remain undetectable for a time, then you may want to try ceasing imatinib.  Monthly PCR testing for a time is recommended if you cease TKI therapy.

After 7 months diagnosis

Report (7-2018) is - I'm confused about this. Did you have a bone marrow analysis done in July 2018 or is this report from the year you were diagnosed? If this report is from 2018, why did your doctor perform this test?

Sorry

Typing mistakes

Report (7-2008)

How many times in a year are your PCR tests performed? Do you believe the lab that performs your tests gives accurate results?

Ans:

PCR test 6 month last 3 year 8 month
CBC report every 4 month (because my check-up 1 time every 4 months....)

Do you believe the lab that performs your tests gives accurate results?

Ans: yes, because
My treatment in government hospitals in India

If you believe your results for the last several years are accurate and you can receive PCR testing every three months, then I see no reason why you couldn't reduce your imatinib dose to 300 mg/day. If your PCR tests remain undetectable for a time, then you may want to try ceasing imatinib. Monthly PCR testing for a time is recommended if you cease TKI therapy.

Ans:

PCR test every six months

Last 3 years every 8 months

Do you know what the limit of detection is for the lab that performs your PCR tests? For example, my lab reports it's limit this way: "The assay has a limit of detection of 0.0069 BCR-ABL1-NCN (%) with high analytical precision at the MMR Level.

Answer

Interpretation of bcr-abl ratio :

Dignosis, pretreatment or
hematologic-relapse - (100)

Complete hematologic response( 10-1)

Complete cytogenetic response ( 0.1-1)

Major molecular response (0.01-0.001)

Undetectable transcript (>0.0001)
(complete molecular response)

2013, 2014, 2015, 2016, 210 7 report

Undetectable

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA

Ration (Fusion gene copies /abl gene copies) : 0.25%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....

Please reply......

What says report Report?????

Rc Kirk, devid fits , fiona Vaughan , AlastairC sid

Please reply...........

I agree with RC about looking at dose reduction. Certainly if you were in UK I would expect a specialist to be talking about reducing your dose of imatinib with regular BCR-ABL testing to confirm you were maintaining MMR. Whether you go to 300mg or 400mg for a time and if MMR maintained reduce again to 200mg is a discussion between you and your doctor. I would suggest monthly testing for the first few months after the reduction - that's what I did.

I hope you are now satisfied that there is no problem with getting married or having children while you are on imatinib. I would also echo what Fiona said about being as open as you can about the condition. It is very likely that someone with your good response to imatinib will live their normal lifespan. It is important that your wife and family understand that, and if you can help one other person who has gone through a similar set of concerns to you, that is a good thing too.  

Thanks for all members
I satisfied on married question

My next check up is next month ( December 2018)

I ask my doctor doctor reduce dose next month again

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA

Ration (Fusion gene copies /abl gene copies) : 0.25%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....

Please reply......

What says report Report?????

Ayurveda doctor says indian turmeric, giloy (Tinospora cordifolia) and amla (indian gooseberry) good for cancer

What your opinions?

Turmeric may have a small benefit - the jury is out. But the most important thing - 99.9% of your treatment - is about your TKI.

David.

Hi devid

Can you explain this report......

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA

Ration (Fusion gene copies /abl gene copies) : 0.25%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....

Interpretation of bcr-abl ratio :

Dignosis, pretreatment or
hematologic-relapse - (100)

Complete hematologic response( 10-1)

Complete cytogenetic response ( 0.1-1)

Major molecular response (0.01-0.001)

Undetectable transcript (>0.0001)
(complete molecular response)

2013, 2014, 2015, 2016, 210 7 report

Undetectable

Last 2 time (August 2018 & April 2018)
I asked my doctor reduce dose
Doctor said no......

You are an excellent candidate for reduced dose - (200 mg)).

You are also an excellent candidate for cessation (zero dose).

The choice should be yours and not your doctors. The NCCN protocol permits this based on outstanding scientific results already reported in the literature. All you would need if you decide to stop taking Gleevec is monthly PCR tests to verify your continued PCR status.

You have a 50% chance of remaining treatment free. And if you remain PCR "undetected" for six months your odds of remaining treatment free go up dramatically.

If you decide to go this route and your doctor refuses - get a new doctor.

Hello Vikram,

Can you explain this report......

December 2010 reports

Fusion gene copy number :

1785 copies of m-bcr-abl gene /ug RNA  -  I'm not sure what this means.  Perhaps it means they found 1785 copies of the mutant BCR-ABL1 gene per microgram of ribonucleic acid

Ration (Fusion gene copies /abl gene copies) : 0.25%  -  This is the ratio of BCR-ABL1 gene copies to ABL1 gene copies.  This number gauges your molecular response to TKI treatment.  It would be good to know if this number is an International Scale result.

Since you've had undetectable results for so many years, this one result doesn't have much significance for you today.  It would be interesting to know what your PCR history was during the early years of your CML therapy.  For example here is my PCR history since diagnosis:  118.7%, 003.59%, 000.914%, 000.434%, 000.412%, 000.360%, 000.174%, 000.088%, 000.064%, 000.035%, 000.061%, 000.028%, 000.041%, 000.039%, 000.025%, 000.029%, 000.039%, 000.070%, 000.088%, 000.233%, 000.013%, 000.007%

After report doctor change my dose

400 MG imatinib to 600 MG imatinib per day....  -  This would be the normal course of action if you were not able to maintain PCR scores of less than 0.1% on 400mg imatinib.

Interpretation of bcr-abl ratio :

Dignosis, pretreatment or
hematologic-relapse - (100)

Complete hematologic response( 10-1)

Complete cytogenetic response ( 0.1-1)

Major molecular response (0.01-0.001)

Undetectable transcript (>0.0001)
(complete molecular response)

2013, 2014, 2015, 2016, 210 7 report

Undetectable

Last 2 time (August 2018 & April 2018)
I asked my doctor reduce dose
Doctor said no...... 
-  Tell your doctor that your side effects are really bothering you and that a lower dose will make you feel better (and maybe increase your sperm count).

Kirk

Vitamin d 3

HAIR PROBLEMS (last 6 months)

LOCAL DOCTOR RECOMMENDED

Vitamin D3 tablets 60,000 uI
1 per week...........

Any suggestions........

What is your vitamin D level as measured by a blood test?

Your doctor is recommending a common dose schedule for people with low vitamin D.

I disagree, however, with one massive dose per week in order to raise vitamin D quickly. It is not good for the body to get massive vitamin D at one time.

Much better to take 10,000 IU's per day for 5 - 6 days per week for 3 weeks to elevate a very low vitamin D level. And then after that schedule moderate your dose so you achieve a vitamin D blood level between 50-70 ng/ml. In my own experience, I need 5,000 IU's per day in summer and 10,000 IU's per day alternate days in winter (5,000 in between) to maintain a vitamin D level around 60- 70 ng/ml.

One should take vitamin K2 along with vitamin D3. They work together to keep calcium out of soft tissue (like arteries). I take 200 mcg vitamin K2 per day.

Vitamin D is vital to immune health - especially in activating T-cells which attack cancer (including CML). I know of no single report of a CML patient at diagnosis who also had high normal levels of vitamin D (i.e. > 60 ng/ml). Correlation? who knows, but in my case again, once I increased my vitamin D level, my PCR plummeted, blast cells disappeared and I am now on very low dose Sprycel and PCRU.

Vitamin D level not check

Vitamin D3 tablets recommend for hair falls problem (local doctor)

Low vitamin D can result in hair loss.

I can't imagine a doctor prescribing 60,000 IU's of vitamin D and not know your vitamin D blood level.

You should get your vitamin D level checked.

(note: vitamin D3 capsules are the active form of vitamin D.)

Hi scuba

hair falls problem

Faisal hair problem ( beard hair growth problems)

Beard hair only some area covered. Some area no hair. (imatinib side effects)

Ayurveda doctor recommended vitamins D3 and ashwagandha ( Ayurveda neutral remedies) ( increase testosterone levels naturally)

For hair problem......

Massage with coconut oil and castor oil.

Sirsasana (headstand pose)

ANY SUGGESTIONS ON FAISAL HAIR (BEARD HAIR PROBLEMS)

One of reasons this side effects disease in under 16 age???

What's your opinion

Any one face this problem???

Any solution???

Any suggestions..... ( side effects : hair falls and beard hair growth problem)
Any solution.......

Please reply

Last 25 days (1 5 days stop drug last ten days 400 MG imatinib per day) ( reduce dose 600 MG to 400 MG) (without doctor's advice )

Next check up December...... ( 27)

Please reply..............

Hi Vikram,
I am also indian.Please some help needed from your side.Which hospital now under treatment.which place Vikram and your native place which state.wating for your valuable reply.

Hello ..... ..... ..... ...... Please reply your oppinion ... Side effect hair fall and facial hair ( beard hair ) ( some area of beard no hair ) any suggetion ... Any solution ??? Please reply .......

???????..... HELLO ..... PLEASE REPLAY ......

Hello Vikram,

My advice to you is to tell your doctor that you are taking a lower dose of imatinib at your next appointment.  300mg per day would probably be a good starting reduction and then if you had a PCR test in three months you can verify your undetected PCR score and perhaps reduce to 200mg per day.  I believe imatinib is available in bottles with 90 - 100mg tablets.  It's my opinion that you should have PCR tests every three months if you are on a lower than normal dose of TKI.

As for your head and facial hair - a lower dose of imatinib and getting your vitamin D level up might cause improvement.  Hair growth and patterning are quite unique to each individual so it's hard to say if your hair growth patterns are natural for you or if your years of higher dose imatinib treatment are affecting your hair growth.

Good luck at your appointment.

Kirk

reduse dose 600 mg to 400 mg imtinib ( without doctor advice) next chekup 5 january 2019 hair fall problem ..... minoxdil help ?? regroth hair ??

Minoxdil 5 help in hair loss?? Hair fall problem side efect of imtinib any suggetion ..... Please .....

Yes. Minoxidil could help, but it is not a miracle. And it would be very wise to tell about it to your doctor. First of all it is necessary to inform your doctor about dose reduction! Vitamin D, zinc, selen and healthy diet... And also emotional stress has quite a big impact on hair growth. 

Hi Vikram,

Whilst browsing the internet today, I saw a video called "The Missing Tile Syndrome".  It used hair in one of it's illustrations and it made me think of this thread.

Good luck at your upcoming appointment!

Regards, Kirk

Thanks for reply

I know...

But

I try control cml and side effects maximum possible..........

Cbc report

30 December

Hemoglobin 13.1

Total wbc 5700 per cu. Mm

Platelet count 2,60,000 per c. Mm

Nutrophil 47
Lymphocytes 46
Eosinophils 04
Monocytes 03
Basophils 00

Rbc 4.83 mililin / cmm

Hct 33.2
Mcv 78.1
Mcv 28.2 cu micron
Mchc 33.2

M BCR ABL

Date of collection 29/10/2018

30/12/2018 receive.....

UNDETECTABLE
Complete molecular Response

(2012, 2013, 2014, 2015, 2016, 2017, also UNDETECTABLE)

Two doctors....

1 check up (junior doctor)

2 approve medicine (after signature) ( main doctor) (senior doctor)

I ASKED FIRST DOCTOR REDUCE DOSE 600 MG TO 400 MG.....

DOCTOR (1 ST) : YES

BUT MAIN DOCTOR : No (not approve)

[without main doctor signature not changes possible) ( payment of drug (gleveec) : free Becuse Indian government pay......)]

Main doctor told :THIS DOSE IS GOOD.........
( not REDUCES DOSE..... Becuse Troubling in future)

Only option available
Without doctor advice I reduce dose.....
( dangerous option )

Any advice......

Please reply.......

Well, you have two doctors with two opinions. If it were me, I would consider each doctor's opinion and then add my own knowledge to arrive at a decision.  You are the one who takes the medication every day. You get to make the final decision.

With your years of undetectable PCR scores, I would consider it very low risk to reduce to the standard starting dose of imatinib (400mg).

An option to consider would be to reduce to 400mg for a year and then if you remain with undetected PCR scores, reduce to 300mg for a year and then if you remain with undetected status, reduce to 200mg.

If your goal is to test treatment free remission (TFR), then I would mention it to your doctor at every visit with them.  Eventually they may become comfortable with the idea.  You would need their approval for this, as you should have PCR tests every month when beginning a TFR trial.

 

 

Thank you kirk,

I DECIDE......

I TRY REDUSE DOSE 600 MG TO 400 MG WITHOUT DOCTOR ADVICE........

ONE MONTH...... (JANUARY TO FEBRUARY)

Any opinion.......

Any suggestions...........

Vikram,

Since 400mg is the usual starting dose, it doesn't seem like an unreasonable idea.

You must tell your doctor though. It's important that they know what you are taking for treatment even if they don't fully agree. 

David

Hi Vikram,

If possible, you may want to get your PCR tests done more often as you reduce your dosage.  I get mine tested every three months.  If you go for a CBC every four months, maybe you could get your doctor to order a PCR test with the CBC.

Kirk

Vitamins k2

K2 and 2K same......????????

Vitamin D3....... 5000 UI PER DAY

K2 PER DAY......?

CURCUMIN?

Turmeric and curcumin

Vitamins k2

K2 and 2K same......????????

 

Vitmain K2 is vitamin K2 ---  no such vitamin as 2K.

Vitamin D3....... 5000 UI PER DAY

 

Depends on your system. If your blood level is low (i.e. < 25 ng/ml) then you would need this much or more. If your blood level of vitamin D is high, then 5,000 is too much. Get tested. Find out what your vitamin D level is currently. Everyone is unique in how much vitamin D3 they need to take. For me, I take 5,000 IU's vitamin D3 every day (along with K2) in summer and alternate 5,000 /10,000 IU's in winter. Not everyone should do this. Just depends on what it takes to get your blood level up above 50, but kept below 100 (or best to keep below 80 ng/ml).

K2 PER DAY......?

I take 200 mcg vitamin K2 per day (with food because it is fat soluble) and I eat Natto (which has lots of K2).

CURCUMIN?

Turmeric and curcumin

Curcumin is the 'active' ingredient in Turmeric. Turmeric is the plant root. Curcumin is only a small perentage of Turmeric. Both are good for you. I take Curcumin - between 2 grams and 8 grams per day. Most days just two grams.

 

Hi vikram,apart from gleveek,what you did to get undetectable.what time do you take gleveek?

Diagnosis 2008

400 mg gleevec dose

December 2010 change dose

400 MG to 600 mg

2012, 2013, 2014,2015,2016,2017,2018
Undertacktable

Tablets with full glass of water (after dinner)

Your state?

Your hospital?

TRY GILOY JUICE............

JAVERA JUICE.........

Aiims,delhi.
Today meet the docter,to continue 600 mg,next pcr in september.hoping for the good.how long you are taking giloy and other juice.do you face any side effect.

Javera juice=wheatgrass juice?
Do you use home made juice or bottled one from the market.

Yes....... Wheatgrass

And GILOY juice.......

Home made........

Not Market (market wala pure nahi jyada pani wala hota hai)

No side effects........

Natural....................

TRY.......

May 2019 - FEB 2020

600 mg dose 1 months (20 may - 20 june 2019)

400mg dose 20 days
(21 June - 10 July 2019)

Drug free (no dose) 1 months
( 11 July - 10 Aug 2019)

400mg dose 10 days
(11 Aug - 20 Aug 2019)

600 mg dose 40 days
( 21 Aug - 30 Sept 2019)

(cbc test normal.... pcr test sample collect ...... Result Feb 2020)

400 mg dose 16 days
( 1 Oct - 16 Oct 2019)

Drug free..... 45 days
( 17 Oct - 30 Nov. 2019)

400 mg dose 10 days....( 1 DEC. - 10 DEC 2019)

11 December... full dose (600 mg dose....... 1 MONTH )

(11 December 2019 - 11 January 2020)

400 mg DOSE... 10 DAYS
(12 JAN - 22 JAN 2020)

DRUG FREE....
23 JAN 2020 - CONTINUE........

18 feb 2020
Bcr - ABL REPORT UNDETACTABLE
( COLLECT DATE 27 /09/2019)

11/2011 UNDETACTABLE
2012 undetectable
2013 undetectable
2014 undetectable
2015 undetectable
2016 undetectable
2017 undetectable
2018 undetectable
27/09/2019 UNDETACTABLE

17 Feb 2020 cbc report
Hemoglobin 14.1

Total wbc 6900 per cu. Mm

Platelet count 3,59,000 per c. Mm

Nutrophil 50
Lymphocytes 46
Eosinophils 02
Monocytes 02
Basophils 00

Rbc 5.58 mililin / cmm

Hct 40.6
Mcv 72.8
Mch 25.3 cu micron
Mchc 34.7

My experiment..... (MY SELF)

600 MG IMTINIB DOSE - 400 MG DOSE - DRUG FREE - 400 MG DOSE - 600 MG - 400 MG - DRUG FREE..... cycle..... Continue.....

Any advice... Comments.. Suggestions....

Diagnosis year 2008 (EARLY)

Born merrow test 2008

400 MG DOSE IMTINIB...

After 7-8 month born merrow test

11/2010 bcr-abl TEST (FIRST TIME...)

RESULTS : 0.25% ( 1785 copy of m- bcr-abl gene /ug RNA)( 11/2010)

AFTER RESULT DOSE CHANGE 400 MG TO 600 MG IMTINIB

After 11 months....
Bcr-abl TEST results : UNDETACTABLE....(11/2011)

MY QUESTION IS 3 year bcr-abl. 0.25% bed results???(11/2010)

Why dose change 400 to 600 mg IMTINIB??? ( 12/2010)

Right Decision??

EARLY dose change???

One more year hold 400 mg not possible???

After
11/2011 UNDETACTABLE

And continues....

2012 UNDETACTABLE
2013 UNDETACTABLE
2014 UNDETACTABLE
2015 UNDETACTABLE
2016 UNDETACTABLE
2017 UNDETACTABLE
2018 UNDETACTABLE

I ASKED DISCREASES DOSE 600 MG TO 400 MG DOSE IMTINIB MANY TIME...

EVERY TIME ANSWER..... NO....
( MY TREATMENT IN GOVERNMENT HOSPITAL... NOT CHANGE HOSPITAL POSSIBLE) (ONCOLOGY 3-4 YEAR CHANGE AUTOMATICALLY)

EXPERIMENT DISCREASES DOSE ( my Decision)

May 2019 - FEB 2020

600 mg dose 1 months (20 may - 20 june 2019)

400mg dose 20 days
(21 June - 10 July 2019)

Drug free (no dose) 1 months
( 11 July - 10 Aug 2019)

400mg dose 10 days
(11 Aug - 20 Aug 2019)

600 mg dose 40 days
( 21 Aug - 30 Sept 2019)

(cbc test normal.... pcr test sample collect ...... Result Feb 2020)

400 mg dose 16 days
( 1 Oct - 16 Oct 2019)

Drug free..... 45 days
( 17 Oct - 30 Nov. 2019)

400 mg dose 10 days....( 1 DEC. - 10 DEC 2019)

11 December... full dose (600 mg dose....... 1 MONTH )

(11 December 2019 - 11 January 2020)

400 mg DOSE... 10 DAYS
(12 JAN - 22 JAN 2020)

DRUG FREE....
23 JAN 2020 - CONTINUE........

18 feb 2020
Bcr - ABL REPORT UNDETACTABLE
( COLLECT DATE 27 /09/2019)

2019 UNDETACTABLE.....

Experiment continue ( my Decision)

DRUG FREE CONTINUE.... (next 10 days)

1 march 2020 start 400 mg dose.....

Any advice.... Comments...... Suggestions...... Please reply......

Hi Vikram,

Your experiment is very similar to an intermitted schedule studied in the INTERIM trial:

A couple of questions:

  • Since you started with your experiment you took on average 340mg of Imatinib daily. Is 340mg daily more effective than your intermittent schedule (I don’t know)?
  • What is your goal with your experiment? Do you want to keep doing the same cycle (600 -> 400 -> 0 -> 400) or reduce the daily dose to 400mg?

If the PCR test is your only measurement of success, you seem to be doing fine. Your doctor may have increased your dose to 600mg because you didn't reach MMR after three years. I think that was a good decision, and since 600mg has been working for you so far, your doctor might not want to fix something that isn't broken.

Like you, I was too prescribed 600mg around diagnosis (2014), and last year I started a gradual reduction to 400mg daily by taking 600mg and 400mg every other day. Now I take 500mg and 400m every other day.

Keep yourself informed and take notes from other opinions. Enough data is pointing out that dose reduction is safe after you reach a stable level of molecular response. With your current PCR percentage, the odds are in your favor.

In any case, life is good. Have a good one.

Hi Vikram,

You wrote, "RESULTS : 0.25% ( 1785 copy of m- bcr-abl gene /ug RNA)( 11/2010)"

Do you know which BCR-ABL variant was found in your test result?  Was it the major breakpoint (M-bcr P210), or the minor breakpoint (m-bcr P190)?

If you had the minor breakpoint, then that might be why your doctor was concerned and increased your imatinib dose.

Why does it take so long for you to get the result of your PCR test?

How often are your PCR tests performed?

Copy number : (1785 copy of M-BCR - ABL Gene /ug RNA

Ratio (fusion gene copies/ ABL Gene copies) : 0.25%

(Only mentions )

Was it the major breakpoint (M-bcr P210), or the minor breakpoint (m-bcr P190)? (no mention in report)

PCR report 22 days..... my chekup ones every 4 month (3 time per year....)

Collect reports 4 month.... (MY choice) ( home and hospital distance 300 km) hospital allow collect report after 22 day to chekup date) let collect report (my folt)

Last 5 year every 8 months......

Drug off - drug on experiments my Decision.......after 4 months experiment pcr UNDETACTABLE.....

Experiment continue...... (risky but continue..)

After 11/2011 all pcr report UNDETACTABLE....

MY oncologist not discreases doss.... Many time asked.....
Answer same no.....

Discreases dose ( 600-400-0-400-600)cycle is my Decision......

Hello vikram,you are taking risk.just stop this. take imatinib for some more years.thats all one can say.

Hello karthikeyan...

Thanks for reply....

Diagnosis 2008 (12 year)

Last 8 years UNDETACTABLE.....

600 mg dose... Last 9 years......

Drug on - off relief some side effects.....

Drug on - off start 5/2019

after 4 month pcr results UNDETACTABLE.....

MY pcr every 8 months.....

23 january drug free.... Continue...

(after 45 Days drug free )

Strat dose 7 march 2020......

Any advice............. Suggestions.....

You need suggestion.ok take this.in india imatinib is free,so you don't have pay.if you become imatinib resistant then you have to pay atleast 8000 Rupees per month for nilotinib or dasatinib.if you play with imatinib like this, soon you are going to become imatinib resistant.what is your problem to take imatinib.i know you are well tolerating imatinib.you are making things complicated.just reduce dosage to 400 mg.thats it.i think no one should reply to you.just stop this thread.dont miss to take tablet even for a single day.thats it.

Karthikeyan..........

Thank you for your advice....

Your dose??

( aap imtinib le rahe ho mene aap ki ek post padhi... Usme aapke doctor ne imtinib change kar di kyu...??? 400 mg से 600 mg bi kar sakte the... Aap ki दवाई cost kya hai???

Pradhan mantri jan arogya yojna me nilotinib or dasatinib samil hai ya nai aap ke pass information ho to share kijiye....

Mera next chekup 4 month ke baad hai..... Mera pcr har 8 month ke baad..... Hospital : ahembdad civil

Mera ilaj GIPAP ( NOVARTIS menege karti hai) ME FREE ME MIL RAHI
HAI.........

Hospital se nai mil rahi hai direct Novartis se mil rahi hai....)

Your advice helpful.....

Only side effects imtinib hair fall problem...(little but continue.....) Irritating....

Only this reason......... Risky experiments drug on / off

Okk
Close experiments...... Because risky (DRUG FAILURE)

600 mg to 400 mg dose reduce..... What your advice.......

( Pradhanamantri ki yojna ke bare me information ho wo bi share kijiye.... Please)

PLEASE REPLY...........

Thank you once again your helpful advice.........

Vikram im from Tamil Nadu.i don't know hindi.but i understood what you said. I took 400 mg imatinib for three years from Novartis GIPAP program.then i became imatinib resistant,thats what my doctor said.now I'm taking nilotinib from Novartis for 8000 rupees per month.there is no pradhan manthiri program for nilotinib or dasatinib.if you skip taking imatinib you will become imatinib resistant.so dont do that.now you are just 26.try everything after 10 years, not now.

I didn't get any hair fall problem from imatinib. We get hair fall for many reasons.dont blame imatinib only.dont skip taking tablets.if you want pay 8000 rupees then take the risk.

Okk......

I start dose....... Today.......

Thank for reply....

Karthikeyan....

One more question....

I read your post....

PCR results okk....

Why your doctor change IMTINIB to other medicine......

After 3 years my pcr 0.25 my doctor change dose 400 mg to 600 mg imtinib

After 1 year pcr results UNDETACTABLE..... After December 2011 to 9/2019 UNDETACTABLE.....

My pcr result was ok.but in fish report it was 50% positive.then again did fish test.report was 20% positive.so changed to nilotinib.where you do pcr and fish test?

My pcr result was ok.but in fish report it was 50% positive.then again did fish test.report was 20% positive.so changed to nilotinib.where you do pcr and fish test?

I skipped taking imatinib frequently.i think thats one of the reason for drug failure.yout are lucky that imatinib is working excellent for you.i do pcr and fish from QUEST LAB and SRL DIAGNOSTICS.where you do pcr.

Only pcr ( M-BCR-ABL test) test every 8 months............

No fish test after 2010...

After diagnosed ( 2008 first time) after 6-7 month second time
Bone marrow aspiration and biopsy.

After 2010 only two test cbc and pcr (M-BCR-ABL test) no other test.....

cbc test every 3 month.... Last 5 years every 4 month....

PCR (M-BCR-ABL TEST) TEST EVERY 8 MONTHS....

Ahmedabad civil ( m. P. Shah unit)
Treatment, pcr (M-BCR-ABL test)

( Only cbc test in my city any local lab because basic test)

Only pcr ( M-BCR-ABL test) test every 8 months............

No fish test after 2010...

Fish test

After diagnosed ( 2008 first time) after 6-7 month second time....

Bone marrow aspiration and biopsy.

After 2010 only two test cbc and pcr (M-BCR-ABL test) no other test.....

cbc test every 3 month.... Last 5 years every 4 month....

PCR (M-BCR-ABL TEST) TEST EVERY 8 MONTHS....

Ahmedabad civil ( m. P. Shah unit)
Treatment, pcr (M-BCR-ABL test)

( Only cbc test in my city any local lab because basic test)

Diagnosis time first time Bone marrow aspiration and biopsy. After 7-8 month second time.......

My 2010 PCR (M-BCR-ABL test) results 0.25 % (first pcr)

No fish test.... After 2009.....

0.25 results not good... ( I think because after result doctor change IMTINIB dose 400 mg to 600 mg)

AFTER 9 months (600 mg dose)

PCR (M-BCR-ABL TEST) UNDETACTABLE.....

10/2011 to 9 /2019 (last pcr) ... UNDETACTABLE

I request MY Oncology reduces dose

Oncology : yes...

Doctors : no (without doctor signature no changes...)

Karthikeyan

MY English weak.....

Aap ke doctor ko next visit me questions karna chahiye....

Why change the imtinib to other medicine....?

400 MG DOSE to 600 mg imtinib possible.....?

MY case 400 mg to 600 mg change results good....

(ye advice nai hai ........... only questions...)

Hi Vikram,

Maybe someday you'll be able to try Treatment-Free Remission (TFR).  It may be years before it's a widely accepted treatment option for CML.

The current protocol for a TFR is to be tested monthly for BCR-ABL with PCR until you've shown that your result remains below 0.1% IS for a year.

Here is some information from the LLS:

Monitoring During TFR. Frequent and highly sensitive
molecular testing is essential for ensuring the safety
of patients attempting TFR, particularly during the first
year of TKI discontinuation and during re-treatment, if
needed.
The NCCN guidelines recommend monthly monitoring
(by qPCR) for the first year of TFR, every 6 weeks for
the second year and every 12 weeks after that. Clinical
visits with the treatment team are also encouraged on
a quarterly basis (4 times a year) for the first year and
every 3 to 6 months thereafter.
Doctor appointments are important because they
provide the opportunity for the healthcare team to
address patient concerns, discuss qPCR results and
adjust monitoring tests and schedules as needed.

Where you do pcr test.is it government hospital or private lab.

Government hospital but not free....

3500 rs........

Hi RC kirke

Planing reduces dose 600 mg to 400 mg....

May 2019 - FEB 2020

600 mg dose 1 months (20 may - 20 june 2019)

400mg dose 20 days
(21 June - 10 July 2019)

Drug free (no dose) 1 months
( 11 July - 10 Aug 2019)

400mg dose 10 days
(11 Aug - 20 Aug 2019)

600 mg dose 40 days
( 21 Aug - 30 Sept 2019)

(cbc test normal.... pcr test sample collect ......

Pcr UNDETACTABLE

400 mg dose 16 days
( 1 Oct - 16 Oct 2019)

Drug free..... 45 days
( 17 Oct - 30 Nov. 2019)

400 mg dose 10 days....( 1 DEC. - 10 DEC 2019)

11 December... full dose (600 mg dose....... 1 MONTH )

(11 December 2019 - 11 January 2020)

400 mg DOSE... 10 DAYS
(12 JAN - 22 JAN 2020)

DRUG FREE....
23 JAN 2020 - 24 Feb 2020

After karthikeyan advice 600 mg dose continue.......

2011 to 9 /2019 UNDETACTABLE

BUT imtinib faliare this time horrible... Because imtinib free other medicine 8000 rs per month.....

Last 144 days
77 days drug free....

Last month drug free.... Next month (26/2 - 26/3 600 mg dose...

After

600 mg to 400 mg drug reduces good for me....... ( I think)

Reduce dose 600 mg 400 mg next 3 months.....

( many time asked doctors reduce dose 400 mg to 600 mg.... Every time same answer no)

After.....

PCR test.......

PCR test good UNDETACTABLE...

400 MG DOSE counting......

Thank you for reply......... RC kirke

Thank you Karthikeyan... (I m not know about 8000 rs per months medicine)

Thank you once again......

Karthikeyan...

Government hospital but cancer unit... (m p shah) ahembdad..

Karthikeyan...

Government hospital but cancer unit... (big unit) (m p shah) ahemdabad अहमदाबाद

Hi also remember,the side effects are much less in imatinib,when compared to dasatinib or nilotinib.also there is no free program from Novartis for nilotinib.for me imatinib is far better than nilotinib.so don't misuse imatinib.

Okk......

Your age....

Your treatment hospital?????

Government / private.......

Hi karthikeyan...

I asked doctors Manny time reduces dose 600 mg to 400 mg..... ( last 8 years UNDETACTABLE)

Answer same no.....

I am wrong without doctor advice drug on off last 8 month.... (600-400-drug free - 400-600)

After karthikeyan advice my Decision 600 mg imtinib dose counting.......

BUT

600 mg dose high dose?????

One year ago

I asked junior Doctor reduce dose...

Junior doctor : yes (Immediately) 600 mg to 400 mg...

Main Doctor : no...

(Without doctor signature no change)

RESULTS..... 600 mg imtinib dose counting......

I decided.... (25/02/2020) 600 mg dose countine........ ( no option)

BUT..

Last 9 years 600 mg dose imtinib ( high dose)

In future... Big side effects... (fear)...

29/7/2021

CBC REPORT

Hemoglobin 15.1
Rbc count 5.91
Wbc 6930
Platelet COUNT 274000
HCT 47.6
MCV 80.5
MCH 25.8
MCHC 31.8
RDW 15.5

NETROPHILS 55
LYMPHOCYTES 40
EOSINOPHILS 02
MONOCYTES 03
BASOPHILS 00

M-BCR-ABL FUSION GENE By RT -
QPCR ( SAMPLE COLLECTION DATE 22/03/2021) (RECEIVE 29/7/2021)

UNDETACTABLE

May 2019 - FEB 2020

600...... 1 months (20 may - 20 june 2019)

400... 20 days
(21 June - 10 July 2019)

D. free (no dose) 1 months
( 11 July - 10 Aug 2019)

400... dose 10 days
(11 Aug - 20 Aug 2019)

600...... 40 days
( 21 Aug - 30 Sept 2019)

*25.9.2019* M BCR-ABL UNDETACTABLE

400...... 16 days
( 1 Oct - 16 Oct 2019)

DRUG free..... 45 days
( 17 Oct - 30 Nov. 2019)

400.... 10 days....( 1 DEC. - 10 DEC 2019)

11 December... full dose (600....... 1 MONTH )

(11 December 2019 - 11 January 2020)

400 .. 10 DAYS
(12 JAN - 22 JAN 2020)

DRUG FREE....
23 JAN 2020 - 24 Feb 2020

*19.2.2020*

25 Feb - 24 march
600 FULL DOSE

25 march - 5 april
00 drug free

6 april to 9 may
400

10 may 9 june 600 full dose

10 june ....28 july 2020... 400 dose

29 july - 11 august 000

12 August 400 contin

16 Oct-26 Oct 000 drug free

27 Oct - 16 Dec 400 dose

17 Dec..16 Jan 2021 600 full

17 jan.... 19 Feb 2021... 00 drug free

20 Feb - 29 april 400 dose

22 march 2021 (M-BCR-ABL COLLECTION) (29 JULY 2021 report results UNDETACTABLE

30 april - 14 may 2021... 00 drug free

15 may 17 july 400

18 july 27 july 600

November 2011 to March 2021 M-BCR-ABL UNDETACTABLE..

TFR

(1) HOW LONG TIME POSSIBLE in
TFR (maximum) ( ANY DATA)

(2) ANY ONE PERSON live with
long term TFR and continue...?
(any hope long time tfr 5-6-7
++year)

Any information... Please reply

My daily dose 600 mg..

Last 2.5 years

25 days 600 mg
20 days 400 mg
10 days 200 mg
25 days 000
10 days 200 mg
20 days 400 mg
25 days 600 mg...

Cycle continues...

3 Report UNDETACTABLE
(every 8 months pcr report)

PLEASE reply any information

Hi karthikeyan

(my English bad.. please understand)

Oncology: you (me) are many year UNDETACTABLE (end of 2011 to continue)

Discontinue imatinib.. And rt pcr report every months... (if I ready)

My question to oncology

If imatinib fail....
2 nd generations tki 's price / any government program cover?

He says yes

Why your tki' s not cover any program??

I am confused.....

TFR

(1) HOW LONG TIME POSSIBLE in
TFR (maximum) ( ANY DATA)

(2) ANY ONE PERSON live with
long term TFR and continue...?
(any hope long time tfr 5-6-7
++year)

Any information... Please reply

My daily dose 600 mg..

Last 2.5 years

25 days 600 mg
20 days 400 mg
10 days 200 mg
25 days 000
10 days 200 mg
20 days 400 mg
25 days 600 mg...

Cycle continues...

3 Report UNDETACTABLE
(every 8 months pcr report)

PLEASE reply any information

I am confused tfr and doses reduction

Dose increase and discrease combination better than TFR??

MAIN BENIFITE IS THE TFR REDUCE SIDE EFFECTS??

YA..

PERMANENTE / long term TFR hope??

Any data available? Long term TFR (still continue)... 4++ year and continue

How many patients still coutinue TFR??

IF YOU (ANY PERSON THIS FORUM) HAVE ANY INFORMATION AND ANY ADVICE
PLEASE SHARE....

THANK FOR YOUR SUPPORT

THANK

VIKRAM

Vikram - I think you have asked similar questions in the past and the answers will not change.  I did not know that you had been treated for over 10 years and are undetectable.  Congratulations!  I am looking forward to next August when I can celebrate 5 years.  I could be wrong but it seems that there is pressure for you to provide an definitive, absolute answer that you are 100% healthy and can have a family and live a looong time.  The answer to both is probably yes (especially after 10 years and undetectable).  I have three kids (before diagnosis), but knowing what I know, I would certainly be trying to have kids if I did not already.  

Most people live a normal lifespan and have a normal life (jobs, hobbies, dreams, etc.).  In your case I would say everything points to your body responding optimally to TKI therapy.  I think of this as diabetes, where if you follow all of the recommended medical, diet, and health recommendations it should stay pretty well under control.  

There is always a slim chance for all of us that TKI therapy stops working, but even then, all options are not exhausted.  This is a very, very slim chance when you are past 10 years and undetectable.  Again, congratulations.

https://www.cancer.gov/news-events/cancer-currents-blog/2020/cml-stoppin...

Curing CML Is the Ultimate Goal

Results of the LAST study and longer-term follow-up results from other recent studies of stopping TKIs in people with CML show that “most patients who are in remission will stay in remission, especially after they cross the 3-year mark” of being off treatment, Dr. Atallah said.

But only about 20%–25% of all CML patients can successfully stop taking the drugs and remain in remission for 3 years or longer, he said, and these patients still must be closely monitored.

“Ultimately, our goal is to cure patients with CML,” which ideally would mean being off treatment and having no evidence of disease for the rest of their lives, Dr. Atallah said.

Most people with CML don’t consider being on treatment forever the same as being cured, as a recent study led by LAST study co-principal investigator Kathryn Flynn, Ph.D., of the Medical College of Wisconsin found.

In addition to experiencing side effects that affect the quality of their day-to-day life, Dr. Atallah said, people who remain on a TKI for many years may have lasting damage to their kidneys, lungs, and liver.

Financial toxicity is also a concern, because the drugs are often costly even for patients who have health insurance.

For all these reasons, Drs. Atallah, Sweet, and colleagues at 19 research centers in the United States formed the H. Jean Khoury Cure CML Consortium. The consortium will test promising new treatment options for CML, such as drug combinations that could potentially eliminate leukemia stem cells from a patient’s bone marrow for good.

Key questions that remain about stopping TKIs, Dr. Atallah said, include figuring out why some patients can successfully stop treatment and others cannot, as well as how to better predict early on who can stop the drugs successfully. Understanding the reasons why some people can safely stop the drugs could also lead to new, improved treatments, he said.

Copy past this post

In Google many post available.. Tfr in cml..

I not understad what is main goal of TFR ?

(1) permanent remission (life time drug free) if yes... How many people this time still TFR (LONG TIME) and CONTINUE? ANY DATA AVAILABLE... ONLY PRIDICTION PERMANENTE REMISSION POSSIBLE REST OF LIFE...?

(2) Minimum side effects(minimum toxicity) (quality of life) and financial burden

If yes..

Why TFR

DOSS REDUSE IS BETTER THAN TFR

LAST 3 YEAR...

600-400-000-400-600 CYCLE
CONTINUE...

LAST 3 REPORT UNDETACTABLE (EVERY 8 MONTH PCR ABL REPORT)

Sorry for this similar question..

I not understad what is main goal of TFR ?

OPTION
(1) permanent remission (life time drug free)

= if yes...

How many people this time still TFR (LONG TIME) and CONTINUE? ANY DATA AVAILABLE...

ONLY PRIDICTION PERMANENTE REMISSION POSSIBLE REST OF LIFE...?

(ONE LINE EVERY TFR POST...
REST OF LIFE TFR POSSIBLE)
(Only this line reason I INTEST IN TFR)

OPTION
(2) Minimum side effects(minimum toxicity) (quality of life) and financial burden

If yes..

Why TFR

DOSS REDUSE IS BETTER THAN TFR

LAST 3 YEAR...

600-400-000-400-600 CYCLE
CONTINUE...

LAST 3 REPORT UNDETACTABLE (EVERY 8 MONTH PCR ABL REPORT

Option 1 is main goal...
Success rate?
If 5-10%..
I interested

BUT only experiments...

Options 2 is goal..
I think REDUSE DOSS is the better options ( 600-400-000-400-600 cycle is also better options) than TFR 000 DOSE

Sorry for similar questions many TIMES... Because of I am NOT UNDERSTAND..

I am decide this last post this topic...
If I satisfy... Good.. Othervice skip this topic..

Once again sorry.. And thanks for REPLY..

VIKRAM

Hi Vikram

I hope I can help a bit.

I tried for TFR to avoid the side effects I was experiencing on imatinib. My quality of life would be better if I was not on 400 mg Imatinib. I reduced dose to 200mg for a year, held on to 0.005% max and side effects improved a lot. I then stopped taking the pills - there was a slight improvement in side effects but 17 months later my BCR/ABL went above 0.1%. I went back to 400mg for a year, regained 0.000% and have now reduced to 200mg again. SIde effects are more tolerable and I will likely not try TFR again. Dose reduction is the answer for me.

There are some people on here who have been in TFR for many years - Richard and Basil from S Africa come to mind.

This video from the patient day 2 years ago may help you. The title is "Reducing or stopping treatment - who and when?"

I hope that helps

Hi Alisterc

Thanks for your reply...

One more comment on my last 3 year dose plan (if possible comment )

600mg - 400mg - 000mg - 400mg- 600mg

This cycle continues Last 3 year

BCR-ABL report
All 3 Report UNDETACTABLE
(every 8 months)

I change the plan...

1 December - 25 December
(25 days) 000 mg (last ten days drug free. Continue to 25 December)

26 December to 1 march (65 days) 400 mg dose

2 march to 2 april (31days)600mg dose

Next BCR-ABL report in first week of april..

I have dose reduction last 3 year but different plan...

What your opinion / advice /comments

I like TFR BUT MAIN REASON I AVOID TFR IS FEAR... (DRUG RESISTANCE (IMTINIB RESISTANCE) MENTTALY NOT REDY FOR TFR CURRENT TIME (MY AGE 28)in future I TRY...(MY DREAM CURE DISEASE... I HOPE ONE DAY.. DREAM is true)

DOSE REDUCTION ALL READY START (last 3 year but DIFFERENT PLAN)

My English bad please understand

Thanks one's again....for your reply..

🙏🙏🙏

Hi Vikram

I have never heard of changing the dose the way you describe and thus cannot comment on it. Does your doctor know you are doing that?

I am fairly certain that I will maintain a very very low PCR on a steady 200mg; this approach is agreed with my doctor.

Alastair

I last checkup (7/12/2021)

(Junior Doctor) (New Doctor) (I saw him at the hospital for the first time)

My doctor said after seeing the report you can do tfr .. but bcr-abl report will have to be done every month

Also DOSE Reduces can

In 2019, junior doctor reduced the dose, but the senior doctor refused (imatinib is available only after the senior doctor is signed)

This time I didn't even try (not asked senior doctor reduce dose)

Last 3 years...
DOSE reduction and increase
(600-400-000-400-600)

Doctor does not know my plan...

Last 3 Report UNDETACTABLE..

I countine this plan still next bcr-abl report (report time first week of april)

After report... Any decision....(risky but I TAKE RISK)

Thanks for reply ...

VIKRAM

Vikram,

Why did you increase your dose back up? You remain "undetectable" correct?

The only way for you to know if you are functionally "cured" is to test treatment free remission (TFR).

You would have to:

1. stop medication completely

2. monitor PCR tests monthly for six months and remain "undetected".

3. monitor PCR tests every 3 months for two years if remain "undetected".

I am in TFR currently and test every six months. I remain "undetected" so far.

If I remain "undetected" in TFR for another three years, I will consider myself cured.

HOWEVER ...

I will always test for CML at least once per year after that. Cancer is like that.

Hi scuba

 

Why did you increase your dose back up? You remain "undetectable" correct?

 

ANS : YES I UNDETACTABLE LAST 10 Years AND COUTINUE(NOVEMBER 2011 TO COUTINUE)

LAST 3 YEARS DOSE REDUCE DIFFERENT PLAN (600-400-000-400-600)LAST 3 YEAR ALSO UNDETACTABLE AND COUTINUE 

 

600-400-000-400-600 IS MY PLAN (MY CHOICE) (MY EXPERIMENT) (WITHOUT DOCTOR ADVICE

 

The only way for you to know if you are functionally "cured" is to test treatment free remission (TFR).

 

You would have to:

 

1. stop medication completely

 

2. monitor PCR tests monthly for six months and remain "undetected".

 

3. monitor PCR tests every 3 months for two years if remain "undetected".

 

ANS: I INTREST IN TFR (CURE POSSIBLE IS REASON) BUT I AVOID TFR THIS TIME (MY AGE 28)ONLY REASON I FEAR

(REPLACE AND IMTINIB RESISTANCE

 

My plan(600-400-000-400-

600) working Last 3 years if next report (first week in April UNDETACTABLE

 

Change the plan reduces 

(400-200-000-200-400)

 

 

I am in TFR currently and test every six months. I remain "undetected" so far.

 

If I remain "undetected" in TFR for another three years, I will consider myself cured.

 

HOWEVER ...

 

I will always test for CML at least once per year after that. Cancer is like that.

 

ANS you say if 3 year plus tfr and report UNDETACTABLE... CML cure

 

YOUR THINKING? (YOUR PREDICTIONS?) 

 

 

 

ANY DATA ANY RESEARCH PROVE? CML GUIDELINES SAYS cml is CURE possiblty high after 3+ year tfr undetectable?

 

 

Only prediction?

 

 

PLEASE answer last question..

 

THANKS ONCE AGAIN YOUR HELPFULL REPLY 

 

🙏🙏🙏

 

VIKRAM

 

 

 

 

 

 

Vikram,

Nothing in life is 100%. Only statistical odds of something happening one way or another.

After 10 years not detectable, you can easily 'test' TFR with little risk (like almost zero). You will not develop resistance to imatinib. Cancer is not a bacteria. It either works or it doesn't.

There is a high chance that you are functionally cured - meaning CML will not come back after you stop taking imatinib. If it does, you can simply restart imatinib and you will regain 'undetected' status. The only data available is ~50% of patients who have been "undetected" for at least 3 years remain undetected after stopping. The longer you are "undetected" the greater chance your CML stem cells have burned out and the greater chance you will succeed. After 10 years, you are a perfect candidate to try.

I detect in you note that you have fear of stopping drug therapy unless someone can tell you with 100% certainty you are cured. Given your fear, perhaps you should just continue taking the drug at a low dose for peace of mind. I would certainly not take full dose as you are doing. Take 200 mg. so you feel better about "doing something" about your CML.

In my mind, after 10 years "undetected", you should stop therapy and test TFR. But only do so if you feel psychologically ready for it. Fear is powerful and if it is controlling you, no reason to fill yourself with anxiety by stopping.

For me, stopping was an easy decision. Because I know if I lose remission, I can restart at my former low dose dasatinib and regain "undetected" status quickly. The data this occurs is overwhelming - so risk of disease progression is very very low - (near zero).

Am I cured, maybe - I will never know. Treatment free remission is just  that - treatment free - for the rest of my life hopefully.

Thax for reply..

I try TFR IN FUTURE...

I Decide
1 TO 25 DECEMBER (25 days DRUG FREE...)

AFTER 25 DECEMBER..

Plan 1,

26 DECEMBER TO 26 Feb 400 mg imtinib (2 months)
27 Feb to first week of april 600 mg imtinib (1 month)

Plan 2,

26 December to first week of april
400 MG DOSE IMTINIB (3 month)

(plan 1 / plan 2 Decide 25 December)

BCR-ABL test in first week of april

next plan decide After BCR - ABL report results

DOSE Reduces slowly slowly...

Thank for your helpful reply....

Vikram

Why younger people not successful in TFR?

Any reason?
Ya only mith??

Younger people immunity better than old people right?

What's reason??

After December to continue off drug (no dose) (000 dose)

Today 38 day...

PLEASE reply...

Even I'm concerned why younger people are not successful in TFR? I guess maybe they don't adhere to there treatment
They skip taking tki maybe.
The younger you are you can tolerate the side effects more easily and you are otherwise in better shape than older people.
Vikram you are already in TFR??
How long it took you to reach there and how long you are in TFR as you were diagnosed at a very young age ?
Myra

Diagnosis age 16

After 3.5year (age 19 )continue tki first time report UNDETACTABLE

Tki continue... Last 10 years all report UNDETACTABLE...

not in TFR (mini TFR)

38 days no dose... (after 1 December to continue)

20 January 2022 start (400 imtinib dose) (my actually dose 600)(reduse dose)...( MY decision)
In April 2022 next BCR ABL test time..

Any people this forum any information about tfr in young people please share...

Young people not successful in TFR why?

Any suggestion any advice any comments..

PLEASE share...

Thank you...

The ISAV (for Imatinib Suspension And Validation) study http://bit.ly/1UWAZ78
was conducted in five countries (including Canada) and used a new digital PCR test which is reportedly 100-fold more sensitive than conventional PCR testing (Mori and colleagues. ASH 2014; abstract 813).
The 112 people enrolled in the study were required to be in CMR for at least 18 months. The median time on imatinib (Gleevec) was 8-9 years, and the median duration of CMR was 26 months. In the first 16 months off treatment, 43.5% of people relapsed, typically within the first nine months.
All of those who relapsed were able to regain MMR or CMR with two months of re-starting treatment.
In this study, the amount of time on Gleevec didn't have an impact on the risk of relapse.
However, a person's age was inversely related to the risk of relapse. Relapses occurred in 90% of people aged 45 years or younger, compared to 37.5% in those aged 45-64, and 27.5% in those aged 65 years or older.
 

Hi Vikram,
If you are undetectable for 10 yr why didn't you try for TFR earlier. Did you fail before or just didn't try?
You just stayed 38 days without tki and now again started. You reduced your dose.
What are your doctors response on your TFR?
Your doc are not even reducing your dose or attempting TFR?
What is their opinion about young people outcome??

Hii

Not try TFR LAST TEN YEARS

 

LAST TIME MY DOCTOR SAY IF YOU PREPARED TRY REDUCE DOSE / TRY TFR..

 

DOCTOR SAYS YOURS DECISIONS (IF YOU (ME) ARE MENTILY PREPARED AND BCR-ABL EVEY MONTHS..... TRY)

 

THIS TIME I M NOT MENTALLY PREPARED for TFR... (because  (DRUG resistance fear in my mind)

 

I STRAT REDUCED DOSE... (I THINK REDUCE DOSE BETTER THAN TFR) (IN FUTURE I TRY TFR)

 

THIS TIME... (MINI TFR)

TODAY 39's DAY DRUG FREE...

My plan is...

50 days drug free.. (20 /01/2022)

AFTER 20 JAN 2022.... 400 IMATINIB DOSE START.. (CONTINUE 400 DOSE)

NEXT BCR-ABL REPORT IS IN APRIL 2022

IF REPORT UNDETACTABLE 400 MG IMTINIB dose continue...

If 2nd next bcr-abl report also UNDETACTABLE

 

400 MG to 300 mg reduce dose

 

Slowly reduce dose continue... my plan...

Hii buzzm1 The ISAV (for Imatinib Suspension And Validation) study http://bit.ly/1UWAZ78

(15 navember 2013) (8 year old)

 

Younger people immunity better than old people...

 

I am not understand why younger people not successful in TFR compare old people..?

 

How many study and research says younger people not successful in TFR compare old people? 

 

One study and research 

Only coincidence?

 

 

All study and research same?

 

This question only  information purpose 

I think not much research is done. As the treatment to this disease by tki is only 20 years old. It started in 2001 only. So we have info from last 20 years. Hopefully we can get a possible cure and better outcomes for all.