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ramesh kadaru on 27 September 2018

Category: Treating CML

Replies: 1

Last updated: 27 September 2018

BCR-ABL1IS-QUANTITATIVE TEST RESULT
by sandy craine (Sep 27)

Hi Ramesh,
I have some questions:
Given your father has had CML for 25years, can I ask how he has been treated before he was given imatinib (6 months back)?
I assume the PCR test result you quote as

by ramesh kadaru (Sep 27)

Hi My Dad was diagnosed CML 25 years back, he is now 73 years old. He was using Imatinib 6 months back and during the BCR-ABL1IS-QUANTITATIVE TEST RESULT BCR-ABL1 IS -NCN
Category: Treating CML

Replies: 1

Last updated: 27 September 2018
jriccoboni on 26 September 2018

Category: Treating CML

Replies: 7

Last updated: 27 September 2018

PCR test after 1 month of treatment
by sandy craine (Sep 27)

Give yourself and your body some time. You only started therapy 4 months ago and looks like your response is good, so you can at least comfort yourself with the knowledge that you have responsive

by J. HY Wong (Sep 27)

50mg, I have started on 100mg, but because of the immunosuppression my doctor authorized me with 50mg -- and I keep taking 50 to this date. I have been keeping up the exercises, but still not

by scuba (Sep 27)

What dose are you on currently?

by J. HY Wong (Sep 27)

I started four months ago and I got 6% after two months, I think you are in great shape. But even sprycel 50mg is still causing fatigue, I wonder if 20mg could work.
Category: Treating CML

Replies: 7

Last updated: 27 September 2018
autadesiddharth on 21 September 2018

Category: Treating CML

Replies: 1

Last updated: 26 September 2018

Managing thrombocytopenia
by David Fitz (Sep 26)

Hi there,
I’m really sorry nobody has been able to give you any good answers. Food and blood counts are really not that related. We’d all like to earn some special food to boost our blood

by autadesiddharth (Sep 21)

My mother has been in the Blast Crisis for 6 months now. She was currently taking 50mg Dasatinib on an alternate day after few rounds of chemotherapy failed to get her into remission.
She has also
Category: Treating CML

Replies: 1

Last updated: 26 September 2018
hannah2010 on 21 September 2018

Category: Uncategorised

Replies: 3

Last updated: 26 September 2018

Unsure what to do
by sandy craine (Sep 26)

Dear Hannah,
Firstly, congratualtions on your pregnancy. I am not sure if you are treated here in the UK, but you are right to question the 'locum consultant" and his rather unsympathetic

by hannah2010 (Sep 22)

Hi martha
thanks for your reply, may I ask what your bcr abl levels did whilst off the treatment?

Hannah

by Martha Stuart-Berrisford (Sep 21)

Hi Hannah,

Congratulations on your pregnancy. I have had CML for 10 years now and had three pregnancies since. I managed to have two of my children at full term, 42weeks and breastfeeding

by hannah2010 (Sep 21)

Hi
you may have read my post back in June regarding pregnancy and that I had dropped my nilotinib in may this year.
i am currently nearly 23 weeks pregnant now, but received a call from a locum
Category: Uncategorised

Replies: 3

Last updated: 26 September 2018
DawnD on 21 September 2018

Category: Uncategorised

Replies: 4

Last updated: 24 September 2018

So let the ride begin?
by DawnD (Sep 24)

I can’t thank you enough Scuba. I am learning quickly. I am gonna tell the hemotogist about you and Dr Cortes and see what she says. I am ready to do the 20 mg. I may need a second opinion if she is

by scuba (Sep 24)

Dawn,
Actually - I have a suspicion that Sprycel is going to work excellent for you. But you need to start back with a much lower dose. I was on / off/ on Sprycel until my blood counts stabilized.

by DawnD (Sep 24)

Thanks Phillip . I so appreciate your reply.

by Philiptibbs (Sep 23)

Keep your head high and never give up. Maybe try Gleevec . I've tried Gleevec , Sprycel and Tasigna and Gleevec has less side effects for me. It might work for you too. Ask your Oncologist his
Category: Uncategorised

Replies: 4

Last updated: 24 September 2018
Mike1523 on 24 September 2018

Category: Side effects

Replies: 1

Last updated: 24 September 2018

imatinib side effects
by sandy craine (Sep 24)

Hi Mike and welcome,
You describe a set of side effects that many of us have experienced from imatinib. I am not confident in suggesting you lower your dose as I do not know how your particular

by Mike1523 (Sep 24)

I don't have CML but I am told it is rare but similar to it. I have been diagnosed with a condition called myeloproliferative neoplasm with a PDGRFRB rearrangement. My condition responds very well
Category: Side effects

Replies: 1

Last updated: 24 September 2018
chloe870 on 10 September 2018

Category: Drug-food interactions

Replies: 7

Last updated: 24 September 2018

Fasting on Nilotinib
by chloe870 (Sep 24)

Thank you to both of you for all your insight and information. I really hope my journey is as positive as both of yours.

Many thanks

by alexmcpee (Sep 12)

Hi again Chloe,
I had a complete haematological response (chr) in about 3 weeks! This means all my blood levels were normalised. And have been normal for 5 months truly amazing drugs.
I recently had

by cmljax (Sep 12)

I reached MMR in 90 days and my current level of <.003% in 180 days and have maintained that level of response for the past 17 months. The dose reductions occurred from 5 months through 12

by chloe870 (Sep 11)

Hi Cmlijax,
Thanks for your reply. It’s great that you are now down to one tablet a day. Fingers crossed I end up the same way. I’m currently on 2 x 300mg a day, so fasting in the morning and
Category: Drug-food interactions

Replies: 7

Last updated: 24 September 2018
scuba on 18 September 2018

Category: Blood tests

Replies: 22

Last updated: 23 September 2018

"Undetected"
by Isla D (Sep 23)

I'm conjuring up an even smaller 10mg Sprycel tablet for you in my imagination Scuba so you could try 10mg per day for six months before quitting completely.
Also wondering about you getting your

by cmljax (Sep 22)

Thanks Scuba - thought this would be your answer. By the way, I listened in on part of the UK CML conference this morning, and the doc reporting on DESTINY results indicated that he thought

by scuba (Sep 22)

cmljax - He did not provide a source to me, just told me via email on the 5 years being best (instead of two).
He would consider PCR < 0.003% as the same as undetected. Any IS value < 0.01% is

by cmljax (Sep 22)

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success in cessation attempt? Would he consider
Category: Blood tests

Replies: 22

Last updated: 23 September 2018
gazhowell on 19 March 2014

Category: Uncategorised

Replies: 7

Last updated: 21 September 2018

Anaemia from Imatinib for an athlete
by AlastairC (Sep 21)

Hi Gaz. Just realised this original post is some years ago. Can you update me - I reduced to 200mg a year ago. Thanks

by ffiorellino (Sep 21)

Hi Gazowell,
I read your post of few years ago: I'm on the same page, because I like to do trail running on the Alps, but I was found positive to CML and am fighting to combine the two things. I

by cmlblogger (Mar 21)

Hi Gaz - cannot help on the issue
but saying hello from another runner (although not very fast), took up running a few years ago and now try and go for a run every few days (not always possible)

by gazhowell (Mar 20)

Thanks Sandy - I think the fact that I would only go to 200mg a day for 12 months is particularly appealing. With frequent PCR tests it seems very low risk but the benfits could be great.
Hopefully
Category: Uncategorised

Replies: 7

Last updated: 21 September 2018
autadesiddharth on 12 September 2018

Category: Treating CML

Replies: 3

Last updated: 21 September 2018

Questions about blast crisis in CML
by Poppert (Sep 21)

I’ve sufflerad from low thrombocytes, but in chronical phase. Paus and start again was the protocol then. Beeing able to keep on medication longer and longer sounds like good news. I hope it

by autadesiddharth (Sep 21)

Thank you for your response. I'll follow up on the VitD levels and check with the Doctor.
She has also started experiencing low platelet counts and they dont seem to increase. We are taking 2

by scuba (Sep 12)

On again - off again pulsing of Dasatinib is a standard protocol for dealing with myelosuppression (neutropenia, etc.). Her doctors don't want to give her neupogen ("stimulation" shots) in order to

by autadesiddharth (Sep 12)

Hi,
My mother(52y) was diagnosed with CML in March 17 and was started on imatinib immediately. After 8 months on imatinib she started experiencing evening fevers and chill and body aches. Bone
Category: Treating CML

Replies: 3

Last updated: 21 September 2018
Jason Graves on 15 September 2018

Category: Uncategorised

Replies: 16

Last updated: 21 September 2018

Bone marrow transplant.
by David83 (Sep 21)

Hi Jason,
Thats great news about your wife, hopefully now she is at home and on Gleevec the results will just keep getting better. As a newbie CMLer myself and also on Imatinib (generic form of

by RC Kirk (Sep 21)

That's great news Jason! I'm glad you found this forum. That's why we hang out here, to help each other.
Hopefully the Gleevec will be kinder to her than the hydrea was. I didn't

by Jason Graves (Sep 21)

Hello everyone. My wife was released from the hospital and was told she could go home. I just thought I’d post an update on are situation. She’s doing good. All her blood work results are coming

by RC Kirk (Sep 21)

Jason, I found this information today about Hydroxyurea:
The side effects of Hydroxyurea and their severity depend on how much of the drug is given. In other words, high doses may
Category: Uncategorised

Replies: 16

Last updated: 21 September 2018
Mona Gard on 18 September 2018

Category: Uncategorised

Replies: 6

Last updated: 21 September 2018

Chronic fatigue
by Mona Gard (Sep 21)

Thank you. I know what you mean tho, I was fine coming to work then boom it hits. I work a fast place retail and could run circles around everyone. Now I feel like im letting everyone down. Hey don'

by kat73 (Sep 19)

I was 58 when I started on Gleevec. The fatigue was overwhelming and never went away. After two years, I switched to Sprycel and it got noticeably and significantly better, although it's

by Felix (Sep 19)

Hi Super Woman, you have probably spent most of your life so far running around and caring for your family and everyone else, well now its time you cared for yourself a lot more and let others do a

by jason77 (Sep 19)

I was dx last year on my 40th b day and have been on tasigna for about a year, chronic fatigue has never went away yet for me.
Category: Uncategorised

Replies: 6

Last updated: 21 September 2018
blueyes74 on 17 September 2018

Category: Uncategorised

Replies: 10

Last updated: 18 September 2018

Going for TFR
by cmljax (Sep 18)

The results of that study are indeed remarkable and should give many of us great hope, particularly those who are just beginning or have sustained MR4.

by AlastairC (Sep 18)

Thanks for posting that link. Looking at it I am a bit gobsmacked - no less than eight of the authors listed on that paper are on the speaker list for the patient day in Birmingham on Saturday.

by cmljax (Sep 18)

See below for summary of Destiny:
https://learningcenter.ehaweb.org/eha/2018/stockholm/214524/richard.clar...
Note that time of treatment and depth of response (MR4 vs. MMR) were both independent

by blueyes74 (Sep 18)

Back in 2009 i was told i'd be taking pills for life unless a cure came along. I'd been undetectable for most of my results bar the odd 0.001 or 0.003. I wanted to stop back in 2014 but
Category: Uncategorised

Replies: 10

Last updated: 18 September 2018
Romo on 13 September 2018

Category: Uncategorised

Replies: 4

Last updated: 18 September 2018

The next Medical Trend
by David Fitz (Sep 18)

Sounds exactly like what someone from the planet Xitar would say! 😂😂😂

by Romo (Sep 17)

I never heard of planet Xitar.
I think you made this up.
Romo

by scuba (Sep 15)

People from the planet Xitar can get you excited.
Romo is from there. So be careful.

by DawnD (Sep 15)

And here I was getting very excited!!
Category: Uncategorised

Replies: 4

Last updated: 18 September 2018
Romo on 18 September 2018

Category: Uncategorised

Replies: 1

Last updated: 18 September 2018

Everyday a new idea.
by Felix (Sep 18)

Hi Romo,Another idea I read yesterday,”Cockle Chemo” , saw this on Sky News .The sugars taken from these shellfish could cure some cancers particularly in children ,this is a study from

by Romo (Sep 18)

https://www.sciencedaily.com/releases/2018/09/180912133528.htm

Quote"
Omacetaxine mepesuccinate is a protein synthesis inhibitor,
FDA approved to treat chronic myeloid leukemia.
When the
Category: Uncategorised

Replies: 1

Last updated: 18 September 2018
Anne Roche on 15 September 2018

Category: Uncategorised

Replies: 4

Last updated: 17 September 2018

Side effects of imatinib
by kat73 (Sep 17)

Drastic hair thinning - check. Texture change to fine and wispy - check. And increased speed in growing length - check. So, basically, the worst of all possible worlds: I

by alexmcpee (Sep 17)

Hi I have been on Tasigna for 5 months and have noticed hair thinning and the texture is defo not the same. Its not drastic yet but its defo felt by me for sure.

by jason77 (Sep 15)

I have quite the opposite effect. I have been on Tasigna for 12 months and my hair grows faster then before averaging a little over an inch a month. It does not make sense to me as hair thinning/

by Felix (Sep 15)

Hi Anne, My hair was thinning 12 months before I was diagnosed with CML that’s why I went to the doctors thinking it was my thyroid dipping , I was sent for blood tests .I have been on Imatinib for
Category: Uncategorised

Replies: 4

Last updated: 17 September 2018
SusanL on 14 September 2018

Category: Uncategorised

Replies: 4

Last updated: 16 September 2018

Below normal levels of IGG, IGM, IGA
by SusanL (Sep 16)

Thank you for responding. I have had these tests before the gleevec and they were always normal.

by SusanL (Sep 16)

I have found in medical research that Imatinib can cause the lowering of IGG IGA etc.

by Nimbus2 (Sep 15)

I think that the word to Google are "Immunoglobulin A Deficiency". The following may be helpful, but there are no references to particular drugs. Immunoglobulin A Deficiency seems to be more

by RC Kirk (Sep 15)

Sorry to say, I have no idea. I don't think I've ever had tests for those. Have those tests been part of your normal blood workup, or just a one time thing where they were found to be
Category: Uncategorised

Replies: 4

Last updated: 16 September 2018
Bmckenna on 14 September 2018

Category: Side effects

Replies: 3

Last updated: 15 September 2018

It's been 2 years on gleevec
by onekayaker (Sep 15)

Barb,
My one on one support survivor contact who has been on gleevec 17 years drinks pickle juice for the cramps. When she travels she gets leg cramps and then she eats mustard packets.

by Bmckenna (Sep 14)

Hi Kirk,
ill talk to my oncologist about this. Thanks SO much for the reply!

by RC Kirk (Sep 14)

Hi Barb,
You might try going back to Sprycel at a low dose if your numbers are good. I'm taking 20mg per day, so far it's been working better than imatinib did.
Kirk

by Bmckenna (Sep 14)

Hi All,
i first posted on here in 2015 after my dx of CML. I was started on sprycel and while my numbers went down well the side effects on bone pain muscle pain joint pain and headaches were
Category: Side effects

Replies: 3

Last updated: 15 September 2018
Rick B on 8 September 2018

Category: Uncategorised

Replies: 6

Last updated: 14 September 2018

Wicked mouth sores
by Romo (Sep 14)

Do you need a prescription for magic mouthwash?
"Interested in making homemade Magic Mouthwash or Magic mouthwash OTC?
All you need is equal parts of liquid benadryl and maalox.
If you are trying to

by Rick B (Sep 14)

Onc prescribed magic mouthwash. It works! Thanks to you all.

by cmljax (Sep 11)

Started on 600 mg Tasigna and about 6 months into treatment I had a series of swollen salivary gland incidents all followed by multiple mouth sores. I have used magic mouthwash (without the

by kat73 (Sep 10)

Sorry to tell you the Bill Clinton eyes will never go away as long as you are on imatinib. They get a little better on doses lower than 400 mg. But it is a signature SE of Gleevec.
Category: Uncategorised

Replies: 6

Last updated: 14 September 2018
Tanya Cuffe on 11 September 2018

Category: Children & young people

Replies: 8

Last updated: 13 September 2018

Please advise
by Romo (Sep 13)

Depression is the other side of CML.
What depression does is slow down
body energy. And this allows disease
to take advantage of lower energy.
Disease is an evil force that will destroy

by kat73 (Sep 13)

Tanya - Sandy, Alistair, Scuba - all have given you the correct advice. I would only add that I also had severe depression and fatigue on Gleevec, and this all got much, much, much better on

by Romo (Sep 13)

Yes, I congree, That’s just trendtabulous!
Romo

by scuba (Sep 13)

Tanya,
Alastair and Sandy are absolutely correct. There is no difference in your results.
In fact, any PCR measure below 0.01% is indistinguishable from PCRU (i.e. 'undetected'). Many false
Category: Children & young people

Replies: 8

Last updated: 13 September 2018