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MarkP66 on 29 July 2019

Category: Uncategorised

Replies: 11

Last updated: 30 July 2019

Day one of the rest of my life
by alexmcpee (Jul 30)

Hi Mark!
As others have said welcome to the club no one wanted to join!
You’ll have lots of questions and this is the best place to get answers. Honestly without this site I’d have been

by MarkP66 (Jul 30)

Hi Dusty
Many thanks for this and appreciate the reply and help
Mark

by Dustylloyd (Jul 30)

Hi mark, I was diagnosed nearly 5 years ago and can’t believe how good things seem to be, obviously at the start shock, worry, and probably feeling sorry for myself but the good days far

by MarkP66 (Jul 30)

Hi Nimbus.
Many thanks for taking the time to post for me.
Given its only day 2 I await what surprises the drug will bring me ! I have my 200mg awaiting when I get home for
Category: Uncategorised

Replies: 11

Last updated: 30 July 2019
alexmcpee on 24 July 2019

Category: Uncategorised

Replies: 5

Last updated: 30 July 2019

Today’s 24th July - CML patient group kings college.
by alexmcpee (Jul 30)

Hi Nicola,
Sorry I missed you. Maybe next time. I loved meeting everyone. Strange thing to say but we all have an instant connection albeit over this.
Take care
Alex

by nicolaclubb (Jul 30)

Hi Alex
I was also attended the support group at Kings. Had to leave early as got a message saying the trains were being delay/cancelled because of the heat.
I found everything really

by alexmcpee (Jul 25)

Hi Debbie,
Wow you’re doing great I’d be so chuffed with those levels. I am not yet in MMR but close and hope to be so whenever that may be. I haven’t always been calm it’s

by AlastairC (Jul 25)

Hi Debbie,
There have been several trials about dose reduction and stopping treatment which have been completed. Prof Richard Clark talked about the Destiny Trial at the patient day last year - you
Category: Uncategorised

Replies: 5

Last updated: 30 July 2019
Parklife on 29 July 2019

Category: Other conditions

Replies: 3

Last updated: 30 July 2019

Advice and work
by Parklife (Jul 30)

Thanks for getting back. I do agree that is would seem the spectrum of effects on each individual via disease and treatment is broad, it makes trying to wonder what is normal or a trend, hard.
I

by AlastairC (Jul 30)

Hi just a thought on the work thing - the Equality Act 2010 requires your employer to make reasonable adjustment to your work to help you deal with your cancer diagnosis. It may be worth gently

by slynch (Jul 30)

Hello,
Sorry to hear you haven't been feeling well. I don't expect that anaemia at those levels is enough to explain your signs however your GP would be the best person to ask. I wanted to

by Parklife (Jul 29)

Hi all.
It's been sometime since I came on the forum. Life and work have been so busy, among a few other things.
CML diagnosis 6 year ago. Bosutinib daily 400mg.
I just wanted to throw out a couple
Category: Other conditions

Replies: 3

Last updated: 30 July 2019
bpngoc2 on 30 July 2019

Category: Getting help

Replies: 0

Last updated: 30 July 2019

Mom not responding well to 3 TKIs
by bpngoc2 (Jul 30)

Hello,
My mom (age 65) was diagnosed with CML a couple months ago in accelerated phase. The doctor started my mom on hydroxyurea first while waiting for the approval of Sprycel/dasatinib. When
Category: Getting help

Replies: 0

Last updated: 30 July 2019
scuba on 27 July 2019

Category: Uncategorised

Replies: 5

Last updated: 29 July 2019

bcr-abl prevalence in non-CML patients
by Sarah63 (Jul 29)

Here is the research I return to repeatedly, relating the poor function of P53 to CML, and the potential remedy through Misoprostol (ProstaglandinE1 kick-starts the P-53).
I just finished

by israel (Jul 29)

Interesting. Putting this in perspective, you can argue that BCR-ABL is a symptom, or one of the symptoms, rather than the cause of CML. Maybe, TKI treatment is a symptom suppressor.

by scuba (Jul 29)

The number nine and number 22 chromosomes are bound tightly in the nucleus right at the bcr, abl breakpoints. It's any wonder that CML is not more prevalent. But I suspect that despite 9;22

by David Fitz (Jul 28)

Fascinating. I knew BCR-Abl could be seen in otherwise healthy people - but I never expected it could be even close to 1%, never mind 10%.
Category: Uncategorised

Replies: 5

Last updated: 29 July 2019
Steve Q on 25 July 2019

Category: Other conditions

Replies: 1

Last updated: 28 July 2019

CML - Gleevec - Renal Failure?
by johnw1001 (Jul 28)

Hi Steve,
From what I have read about the impact of Gleevec/imatinib on the key organs of the body it seems that the drug is eventually largely expelled through the faeces (often with a brown

by Steve Q (Jul 25)

Does anyone have any information on gleevec and any relation to renal failure?
I know it can affect creatinine ratio, which can be a false indicator of renal failure. However, if there is blood
Category: Other conditions

Replies: 1

Last updated: 28 July 2019
Chuckster on 25 July 2019

Category: Blood tests

Replies: 0

Last updated: 25 July 2019

New blood Test Results: What does this mean?
by Chuckster (Jul 25)

Switched labs from Quest Diag. to Lab Corp:
Last 3 results from Quest were all 0.000 not detected both on FISH and BCR/ABL1 etc.
Now these new results from Lab Corp:
b2 a2 IS %: 1.146
b3
Category: Blood tests

Replies: 0

Last updated: 25 July 2019
Ontasigna on 19 February 2019

Category: Treating CML

Replies: 2

Last updated: 24 July 2019

Need advice : urgently
by David Fitz (Jul 24)

45 days is not a long time, with your spleen receding again there's all sorts of movement going on inside you - especially when it was large at diagnosis.
It will settle - it's really common

by alexmcpee (Jul 24)

Hey,
I too had 22cm Spleen at diagnosis and went back to normal after about 6weeks. I had some pain in that area as it returned to its normal size but it was felt in my back rather than the front.

by Ontasigna (Feb 19)

Hi all,
Need your advice/suggestions.
I have pain in my left upper abdomen since last 4 days. My wbc count is normal- 5300.
I had enlarged spleen 22 cm at dx - 45 days back and i am currently on
Category: Treating CML

Replies: 2

Last updated: 24 July 2019
David Fitz on 24 July 2019

Category: About CML

Replies: 3

Last updated: 24 July 2019

UK CML Patient Day 2019 - Leeds, 21st September
by David Fitz (Jul 24)

I would hope that issue was specific to the location last year and that the audio is easier to follow at the Leeds venue this year.

David.

by Nimbus2 (Jul 24)

Last year's meeting was excellent, but I really struggled in hearing some of the presenters over the sound system. Those who spoke more quietly or at a distance from the microphone were

by alexmcpee (Jul 24)

Looks great I may attend this. I am headed up to Kings College Hospital today for the talk at 2 - 4:30. I’ll be using more as an opportunity to meet fellow CML’ers. But of course listen

by David Fitz (Jul 24)

For those patients in the UK, the annual CML Patient day will be in Leeds this year on September 21st. It's a great day to learn more about CML, and get the opportunity to be able to ask the
Category: About CML

Replies: 3

Last updated: 24 July 2019
Vikram on 28 June 2019

Category: Uncategorised

Replies: 10

Last updated: 24 July 2019

Question?
by alexmcpee (Jul 24)

I would concentrate on what you have CML and not what you don’t have. I can see you are suffering from much anxiety I do get it. Live your best life, you’re doing so well I would be so

by Vikram (Jul 24)

One more question
CML and Cml treatment (tki IMTINIB.....) increases risk of diabetes
PLEASE REPLY
ANY IDEA.....

by alexmcpee (Jul 15)

Wow you’re doing great you’ve got nothing to worry about. As the others have said you don’t need the evidence, the evidence we have says you’ll live a normal life span and

by Vikram (Jul 13)

Thanks for reply
How long undetectable possible?? (2011, 12,13,14,15,16,17,18 undetectable)

( lifetime possible????)
Any idea..
Any research...
HOW LONG TFR POSSIBLE??? (ONLY 2 YEAR???)(
Category: Uncategorised

Replies: 10

Last updated: 24 July 2019
Koncho tsering on 15 July 2019

Category: Blood tests

Replies: 17

Last updated: 23 July 2019

My father diagnosed with CML
by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by Koncho tsering (Jul 23)

My doctor said if the haemoglobin falls further next week then we'll need to do a blood transfusion in order to increase the level of haemoglobin in blood. However I don't know how long the hgb in

by scuba (Jul 22)

If he takes Veenat with food (bread / oatmeal), he will likely not have any nausea.
I took Gleevec back in the day in the middle of a meal, not at the beginning or end.

by Gian P (Jul 22)

My doctor says that is the drug that cause the hgb to go down and that causes fatigue etc, she insists that food won’t do much, but i try eating enriched Iron food as often as i can, and
Category: Blood tests

Replies: 17

Last updated: 23 July 2019
Shekhar on 22 July 2019

Category: About CML

Replies: 6

Last updated: 23 July 2019

Please advice!!!!!
by Shekhar (Jul 23)

Thank You, AlastairC and Israel,
I will definitely put a topic of discussion with my doctor on my next visit. All the information I went through were very helpful and helped me a lot.

by israel (Jul 22)

Hi Shekhar,
Congratulations on your results.
I asked a similar question on this forum some time ago and received great info and support from members of this forum.
You might be interested in reading

by AlastairC (Jul 22)

Shekhar, I am following the protocol of the Destiny Trial, and am currently PCR 0.01% 8 months after stopping taking imatinib.. There is a lecture from Professor Clarke which explains the approach

by Shekhar (Jul 22)

Thank You, Chrissie! I will definitely talk to my doctor to reduce to 300mg and so on. I also read the information in the home page. It was very helpfull and had some clear idea on how to move
Category: About CML

Replies: 6

Last updated: 23 July 2019
Jenny9391 on 20 July 2019

Category: About CML

Replies: 6

Last updated: 23 July 2019

Help, advice, thoughts.
by Shekhar (Jul 23)

No, we chose to stay on medication. It takes time, I think the best option(Medication) to go with rather than going for transplant. It’s good news that the spleen is back to normal. So let

by Jenny9391 (Jul 22)

Shekhar, did you go on to have the transplant?

by Jenny9391 (Jul 22)

Yes we are in the uk. We are under birmingham childrens hospital. I have no idea what the numbers are to be honest i wouldnt know how to use them. i just know that shes got a detectable bcr-abl. As

by Shekhar (Jul 22)

Hi jenny,
I got diagnosed CML at the age of 17. Right now I am 31. It has been almost 14 years I have been under medication and now I am living a normal life and happy married life. I have a
Category: About CML

Replies: 6

Last updated: 23 July 2019
Refaye on 15 April 2012

Category: Uncategorised

Replies: 14

Last updated: 22 July 2019

Staying Fit after getting CML
by Gian P (Jul 22)

I understand, and certainly agree that we are all more careful about what we eat, and what we do, i feel better than when i was CML free, and i will continue to thrive for my health, and yes, i am

by Shekhar (Jul 22)

Hi,
I am on Medication since 2004. I have been taking Gleevic 400mg daily. I also had the same concept, that CML patient should not do heavy exercise. But since last two years, i have by

by scuba (Jul 22)

Gian - it's just data. CML is no longer a terrifying disease it once was due to advances in treatment. Patients who achieve CCyR (> 95%) live normal lives. So most of us will have other

by Gian P (Jul 21)

Scuba, i really appreciate your optimism, and makes me feel better the moment i hear it! Thank you , also, is that part of your approach? Do you think positive thoughts help or you mean something
Category: Uncategorised

Replies: 14

Last updated: 22 July 2019
chrissie on 22 July 2019

Category: Clinical trials

Replies: 2

Last updated: 22 July 2019

Increased dosage - again
by chrissie (Jul 22)

Thanks David. Yes i knew about drinking it in apple juice but have avoided this over the past 10 yrs as i would imagine the taste is foul. However if I have to go onto 400mgs again and I get

by David Fitz (Jul 22)

If you are put back on the large tablets in the future, don't forget you can dissolve imatinib and drink it.
https://www.pharma.us.novartis.com/sites/www.pharma.us.novartis.com/file...
Look at

by chrissie (Jul 22)

Well I am now back on 300mgs imatinib again as of tomorrow after taking 200mgs since Jan 2019. My PCRs have slowly risen from 0.004 (Dec 2018) to 0.05 (July 2019). Still MMR and safe and my haem was
Category: Clinical trials

Replies: 2

Last updated: 22 July 2019
brandyhewitt90 on 15 November 2015

Category: Uncategorised

Replies: 5

Last updated: 21 July 2019

Diagnosed sept. 18 2015
by Gian P (Jul 21)

Hi Denise, i am having the same pain in my lower hip, lower back... i also work at a restaurant so i walk a lot.. and i was giving that the reason, but i doubted as well.
Thank you for sharing

by Felix (Jul 21)

Hello Gian,I have been on 50mg Sprycel for about 4 months now .Within a few weeks I got blurry vision, It didn't happen gradually just woke up one morning and realised I couldn't read small

by Gian P (Jul 21)

I am just experiencing the same symptoms too lately, i am on Sprycel 50mg and while shortage of breath is not a problem, i have this blurry vision, heavy head and general body aches, it feels like

by sandy craine (Nov 19)

Hi ... welcome to this forum. I agree with Karen that you should ask your clinician to investigate the shortness of breath you are experiencing with dasatinib. You are right that low HGB can cause
Category: Uncategorised

Replies: 5

Last updated: 21 July 2019
mayita on 12 July 2019

Category: Treating CML

Replies: 6

Last updated: 19 July 2019

Milk Thistle, Dandelion Tea, Multivitamin
by mayita (Jul 19)

Correct, I stopped Milk thistle (I was also overdosing), and the chemo pills too (doctor requested). The oncologist did a Resistant Panel Mutation test to rule out mutation. He said the Bosulif is

by israel (Jul 19)

Interesting find Mayita.
So:
Concomitant use with a strong or moderate CYP3A inhibitor increased bosutinib Cmax and AUC compared to BOSULIF alone/[see Clinical Pharmacology (12.3)]/which may

by mayita (Jul 18)

Hi Israel,
see under "Drug interactions"; from the link you sent. It says:
DRUG INTERACTIONS
•Strong and Moderate CYP3A Inhibitors: Avoid concomitant use with BOSULIF.

by Sunny (Jul 15)

Hello Mayita,
Thanks for the info.
If I understand correctly from your post, 1- Bosulif metabolizes via enzyme CYP3A4.
Category: Treating CML

Replies: 6

Last updated: 19 July 2019
Gian P on 18 July 2019

Category: Blood tests

Replies: 4

Last updated: 19 July 2019

1 year Anniversary and my BCR ABLE not undetectable yet
by Gian P (Jul 19)

Thank you again,
i will make sure to talk to her about these other TKI drugs and see where it takes me.
thank you.

by ColoradoGuy (Jul 19)

Correction 10% is early molecular response not PCyR. I switched from dasatinib because I could not reach 0.1 and then went up to 1.2. It is trending back down on Tasigna thank God (0.36 last

by Gian P (Jul 19)

Thank you,
my Onc is not as worry as i am, but today i told her and she insists on keep doing CBC weekly and CBR abl monthly to monitor any changes, she mentioned a possible Bone Marrow transplant

by ColoradoGuy (Jul 19)

I don't know your history regarding mutation testing and other TKIs but I would imagine that changing TKI would be in order more importantly than changing doctor. I think going above 10 is defined
Category: Blood tests

Replies: 4

Last updated: 19 July 2019
Tanya Cuffe on 17 July 2019

Category: Uncategorised

Replies: 2

Last updated: 18 July 2019

Pleural effusion sympyoms?
by Tanya Cuffe (Jul 18)

Thanks for that!Saw Doc(GP), today he listened to my chest and said it seemed clear...I had 2 flu shots because he looked it up and said it was advisable...think it may be that making me crook...

by Sarah63 (Jul 18)

well, yes you can get PE on 50 mg of Sprycel. Depends on your sensitivity. You should definitely let your doc know. That’s exactly what your doc is for (how I see it). But also,

by Tanya Cuffe (Jul 17)

Hi friends.Quick question.Have been on Sprycel 50mg for 2 months,all going ok however over last week or so my breathing is becoming difficult and I have bit of a cough and am more feverish than
Category: Uncategorised

Replies: 2

Last updated: 18 July 2019
Ontasigna on 15 July 2019

Category: Treating CML

Replies: 4

Last updated: 17 July 2019

Need Help : Feeling cold all the time
by scuba (Jul 17)

Have your thyroid checked and verify TSH, T4, T3 levels (total and free) are normal.
TKI's can impact the thyroid especially during TKI withdrawal (treatment free remission). It did mine

by Tanya Cuffe (Jul 17)

I have had chills pre diagnosis and also now still.It is most unpleasant however I believe it is just one of the symptoms of CML and can also continue on meds.I find it’s just something I

by Ontasigna (Jul 17)

Have chills sometimes. Feel cold most of the times

by alexmcpee (Jul 15)

Hi there,
I am on Tasigna for 15 months not at MMR yet I defo feel the cold more than I used to. When you say chills do you mean you sometimes have the shakes?
Alex
Category: Treating CML

Replies: 4

Last updated: 17 July 2019