TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

You are here

Forum

Mavis on 27 May 2015

Category: Side effects

Replies: 1

Last updated: 2 June 2015

Disatinb
by sandy craine (Jun 2)

I am sorry your daughter is suffering. I am sure she will see some kind of resolution of the initial side effects as the weeks go on. Sometimes it take a while for the body to adjust. If she can, I

by Mavis (May 27)

My daughter has recently started taking disatinib but she is suffering from horrendous headaches and being violently sick. Has anyone else suffered such side effects and if so how long did it last
Category: Side effects

Replies: 1

Last updated: 2 June 2015
Stephanie K on 21 May 2015

Category: Side effects

Replies: 2

Last updated: 3 June 2015

Change from Nilotinib to Imatinib
by Stephanie K (Jun 3)

Hi Chris,
Just wanted to say thanks for taking the time to respond, very much appreciated.
Your reply has given both my husband and I a lot to think about and I will definitely ask the question as

by cdw5000 (May 23)

Hi,
I' sorry to hear your husband is not tolerating Tasigna well. I am a little surprised by the doctor's suggestion of a move to Gleevec. Novartis make both medications and Tasigna is the second

by Stephanie K (May 21)

Hi all, My husband has been on Nilotinib (Tasigna) for nearly three years, his PCR is at 0.043 so its doing its job. Unfortunately he has suffered from lots of side effects, some of which I have
Category: Side effects

Replies: 2

Last updated: 3 June 2015
Parklife on 16 May 2015

Category: Side effects

Replies: 2

Last updated: 20 May 2015

Dasatanib or not?
by Parklife (May 20)

Hi Sandy
Many thanks for your input, I have now decreased the Pregabalin to half dose in a bid to come off to rule that out. Just strange as never had a problem before... That said I am not sure if

by sandy craine (May 19)

Hi John.... sorry to hear you still have such a high level of pain in spite of changing to dasatinib!
I took a quick look at the side effects of pregabalin as you had already looked at dasatinib

by Parklife (May 16)

Hello everyone. Wow, here I am again, with yet another dilemma. I just want to gauge peoples thoughts who have experienced being on Dasatinib or know of others with similar issue. Here is my story
Category: Side effects

Replies: 2

Last updated: 20 May 2015
markmcd on 26 April 2015

Category: Side effects

Replies: 6

Last updated: 19 May 2015

Imatinib not working well and Nilotinib not tolerated - any advice/suggestions?
by sandy craine (May 19)

Hi Mark... this is good news - back on full dose without a return of the initial problems. Shows that when you have a clinician and a pharmacist who are 'engaged' you can be sure you are in good

by markmcd (May 16)

Thanks for your feedback Sandy & Lucas.
A brief update - hopefully of use to someone in future.
Discussed with my Haematologist and the Pharmacist at the hospital, and switched from the

by Lucas (Apr 28)

hi, mark. somehow i'm lucky and don't have many side effects from those drugs. on nilotinib i went to 800mg and never had to lower the dose. i just have a little fatigue, some skins problems and low

by sandy craine (Apr 28)

Mark... welcome. It's good that you have found this forum as there are many on here who can advise. I think all your questions are very relevant and will try to answer as best I can (although Lucas
Category: Side effects

Replies: 6

Last updated: 19 May 2015
Smurf42 on 21 November 2014

Category: Side effects

Replies: 3

Last updated: 14 June 2015

Testosterone levels in male CML patients
by aseli100 (Jun 14)

If not yet solved the problem : as a cml patient used Testosterone suplamentation due to hypogonadism resulted most probably from treatment . it works! you may get plenty of information by joining

by Smurf42 (Dec 15)

Thankyou Sandy
I'm finding it really difficult to find answers but I will certainly investigate the adrenal fatigue information. Thankyou for your answer :-)

by sandy craine (Nov 23)

Supplementing with hormones -particularly with testosterone- is a difficult area to advise on as there are many effects (some quite scary) that can become an issue. I am sure long term TKi therapy

by Smurf42 (Nov 21)

Hi to all, I've joined this forum as the wife of someone who was diagnosed with CML nearly 6 years ago. I am interested to learn if there is anyone else out there who has suffered with a drop in
Category: Side effects

Replies: 3

Last updated: 14 June 2015
tartancaddy on 13 September 2011

Category: Side effects

Replies: 13

Last updated: 22 June 2015

side effects of imatinib
by malisia (Jun 22)

hi gary can you give me any information on what was done to stop the bleeding in the back of the eye anything at all you can give will be greatly appreciated with how they treated it

by tartancaddy (Sep 23)

Thanks Barbara, this give me a great deal of hope for the future. Good luck with staying free!

by claudia (Sep 21)

Dear Gary,
I remember these side effects very well! I suffered with them when i first started taking glivec. But after a few months i got
used to them and after a few years i did not notice any of

by Barbs (Sep 16)

You can also contact me privately
Category: Side effects

Replies: 13

Last updated: 22 June 2015
angela on 10 June 2010

Category: Side effects

Replies: 18

Last updated: 22 June 2015

Eye Bleeds
by malisia (Jun 22)

good day Angela did you have retinal bleeding? if so what did you do to stop the bleeding , what can be done by the doctors and any information on how you got through this will be appreciate
thank

by malisia (Jun 22)

hi neel my husband is having bleeding in the retina what did you do or how did you get the bleeding to stop

by angela (Aug 7)

Hi Neel, I used to have about 2 a month, I used

to get a pain above my eye then it would bleed. I've now

been off Glivec for 2 months and have had more bleeds

I'm afraid it's a not

by Dennis (Jul 17)

Bleeding in the white of the eye. That's what I've had - and I think that's what the majority of CML'ers have experienced.
Category: Side effects

Replies: 18

Last updated: 22 June 2015
chris on 17 July 2009

Category: Side effects

Replies: 8

Last updated: 25 June 2015

Leg Pain.
by johnw1001 (Jun 25)

Hi Sandy and other fellow contributors,

Have been on imatinib for over 8 years and have always experienced muscle cramps especially at night usually at 3 or 4 in the morning.Taking advice from

by Bee (Jun 25)

It could possibly be sciatic pain if they touched a nerve whilst doing one of the BMB's? especially if you had four done in one month.

An Osteopath might be able to help?

by Ahmadsiraj62 (Jun 24)

Hi i am 6 month on with CML taking 400 mg glivec tabs.i have done 4 bone marrow biopsy in one month.and now my right leg is paining very hard.I would really value a few thoughts from anybody who

by Annie Kennedy (Jul 19)

Chris

This may be a red herring but worth investigating - a few years ago (I am 6 years after dx) I had excruciating pain in my foot - it turned out to be sciatica - a slipped disc in my back
Category: Side effects

Replies: 8

Last updated: 25 June 2015
Bmckenna on 18 September 2015

Category: Side effects

Replies: 0

Last updated: 18 September 2015

Tylenol recommended for severe sprycel side effects?
by Bmckenna (Sep 18)

Hello all! I had a dr visit today and I'm very excited to say that my wbc is 4.4 ( down from 59.5), my platelets are 187. I'm very thankful for these TKIs! Having said that I just completed
Category: Side effects

Replies: 0

Last updated: 18 September 2015