You are here

Forum

JulieK on 9 December 2017

Category: Organising your life

Replies: 7

Last updated: 20 December 2017

Winter colds, compromised immunity and CML
by alliswell (Dec 20)

this is not a you should take these post , but what i read so far they seem to be very effective . i didnt search very well though .(planning at weekend) just read the comments.
next week in

by Justine (Dec 12)

Thanks, Sue. That is great to hear! I am so happy for you, and hopeful for improvement of my fatigue, which doctor says to expect. I think it is too soon for me to switch TKI but that might be a

by Justine (Dec 12)

18 years!! Wow, that is really, really encouraging. Congratulations!

by sue. R (Dec 12)

Reply to justine

hi Justine, I was diagnosed on June 1 and started treatment on spyrcel on July 20. Yes I know the fatigue feeling. I was really concerned about this
Category: Organising your life

Replies: 7

Last updated: 20 December 2017
Heidi Kuyper on 19 November 2017

Category: Reproductive health

Replies: 6

Last updated: 11 December 2017

Fertility, Pregnancy, Intercourse and more questions on Imatinib
by cdw5000 (Dec 11)

Thanks David & Sandy, it's been an eventful time, with another daughter on the way due in April!!! Hopefully see you at the next seminar.
Best wishes
Chris

by sandy craine (Dec 11)

Hi Chris.... what great news. Congratulations to you and your wife.
Sandy

by David Fitz (Dec 8)

Congratulations Chris! That's great news to hear.
David.

by cdw5000 (Dec 7)

Hi,

What David said - Prof Jane Apperley believes there is no issue for the male. For what it's worth, I have a healthy 1 year old fathered while on Tasigna with no break in meds.
Best wishes
Category: Reproductive health

Replies: 6

Last updated: 11 December 2017
hyderabadindia on 10 December 2017

Category: Uncategorised

Replies: 1

Last updated: 11 December 2017

12,15,18,21 month pcr test report
by David Fitz (Dec 11)

0.007% is an excellent result - that is MR4, which is a deep response.
I would question why you remain on 600mg of imatinib - it is a high dose and perhaps not appropriate given the deep response (

by hyderabadindia (Dec 10)

HELLO MADAM,
RECENTLY WE ARE DONE WITH BCR-ABL TEST PCR TEST( 18 th month and 21 month ) TESTS..THE RESULTS
Category: Uncategorised

Replies: 1

Last updated: 11 December 2017
nigel on 18 October 2015

Category: Clinical trials

Replies: 96

Last updated: 3 January 2018

DESTINY - Updates from those enrolled on the trial
by Richard42 (Dec 5)

In which case I'm not convinced those are DESTINY data. The results are only trickling in as people complete the study and from what I was told at a meeting at the Hammersmith recently, the

by EvaH (Dec 4)

Hey Sandy.....a doctor at the Swiss Cancer Centre -- insert eyeroll here as I was looking for when I could think about coming off imatanib so that I can try to plan my life. I tend to get work in

by sandy craine (Nov 2)

Hi Eva,
Who supplied you with the random 'facts'
Sandy

by Richard42 (Oct 10)

That's interesting - I seem to recall there was some discussion of a male/female difference in an earlier study but that ultimately only treatment duration and sokal score were shown to be
Category: Clinical trials

Replies: 96

Last updated: 3 January 2018
jessicagrn94 on 30 November 2017

Category: Side effects

Replies: 1

Last updated: 4 December 2017

Side effects from Dasatinib (100mg per day)
by David Fitz (Dec 4)

Oh dear, that sounds really unpleasant for your husband.
If dasatinib is otherwise working well for your husband, I would suggest seeing a GI doctor before thinking about switching to another TKI. A

by jessicagrn94 (Nov 30)

Hi,
My partner was diagnosed with CML 6 years ago (he is now 27). About a year ago he was put on Dasatinib (100mg) and had some bad side effects for a while but they subsided and was pretty much
Category: Side effects

Replies: 1

Last updated: 4 December 2017
Tanya Cat on 14 October 2017

Category: Uncategorised

Replies: 11

Last updated: 4 December 2017

New to this
by EvaH (Dec 4)

hey there
I started getting indigestion after month 6, I find that diet has a big impact. Normal bread is likely to give me indigestion - rye and other "german" type breads that dont rise are much

by chrissie (Nov 20)

I, too, am taking Vit D3 supplement. My blood test for July 2016 showed my Vit D levels were very low - no wonder I broke my arm, rib and a spinal vertebra all in the space of 2 years. I was

by sandy craine (Nov 11)

Hi Richard,
yes Vit D3 is something I make sure I take every day. As it's winter - and we have even less sunlight - I have doubled my dose. I make sure I take the natural form.
Sandy

by Richard42 (Nov 3)

Hi Sandy - yes, tested at the time of the endoscopy and negative. I think this must be routine because they never mentioned it before the procedure but it's there on the results.
All docs I've
Category: Uncategorised

Replies: 11

Last updated: 4 December 2017
Stuart Johnston on 14 May 2017

Category: Side effects

Replies: 21

Last updated: 29 November 2017

Generic imatinib and associated side effects.
by fehr (Nov 29)

I went on to Intrapharm tablets some 5 months ago without problems. I have been on Activis for about 6 weeks and experienced some intense pains at the extremities - toes, feet

by Tony b (Nov 27)

To Stuart, hi and very sorry not to have replied sooner, had appointment waited 21/2 hrs, eventually a doctor came to see me and advised me that my consultant had been taken ill, asked if it was

by Kathyp (Sep 20)

I was on these for 3 months, the taste of the coating was awful, I was sick 30 mins after taking them, I'm now back on glivec x

by Stuart Johnston (Sep 20)

Hi Tony.

How are things progressing.

Since I have gone back on imatinib things have improved significantly.

But I still have a long way to go my joint movement is improving and I
Category: Side effects

Replies: 21

Last updated: 29 November 2017
Shelia Dilbeck on 24 November 2017

Category: Uncategorised

Replies: 1

Last updated: 25 November 2017

Just been diagnosed a few months with CML
by Naj (Nov 25)

Shelia,
I was diagnosed last year in December and strated Tasgina 600mg ( 300mg twice a day).

First three months I had almost no side effects but on the fourth months I had real bad rashes on

by Shelia Dilbeck (Nov 24)

I am on 600 mg a day of tasigna. I have a very bad rash all over my body. Has anyone had this and I have had hair loss too
Category: Uncategorised

Replies: 1

Last updated: 25 November 2017
soupy331 on 18 November 2017

Category: About CML

Replies: 3

Last updated: 22 November 2017

How long will it take CML to return
by David Fitz (Nov 22)

Hi Jarrod,
Ponatinib is used with a particular mutation called T315i - the other TKIs can't deal with this mutation properly.
The other use for ponatinib is as you suppose - when the others

by soupy331 (Nov 22)

Hi David
No they took me off of Sprycel on the 30th of October and I don't see the Hematologist until the 28th of November. They said when I came back in that they would likley start me on a new TKI

by David Fitz (Nov 21)

Hi Jarrod,
Are you not taking TKIs while you are being tested for Pulmonary Hypertension? If so, I guess your break from TKIs will only be short. If so, there's nothing to worry about. CML is of

by soupy331 (Nov 18)

Hi Everyone

I am new to this support group, and want to thank you for all the great information and advice you have been able to provide. It really helped explain what to expect as this
Category: About CML

Replies: 3

Last updated: 22 November 2017
rosegrace on 20 November 2017

Category: Blood tests

Replies: 1

Last updated: 21 November 2017

One year After CML
by David Fitz (Nov 21)

Hi -
400mg is the usual starting dose of imatinib. After 3 months, the goal is about 10% but people should not get too hung up on the exact number.
2.7% after 6 months is pretty good. A lot

by rosegrace (Nov 20)

I have been taking Imatinib (Veenat) for a year. I started with 300mg and my PCR test at 6 months was 15%(IS). So my doctor increased my mg to 400mg and after another 6 months I'm just down to 2.7
Category: Blood tests

Replies: 1

Last updated: 21 November 2017
vonnie on 13 November 2017

Category: Uncategorised

Replies: 1

Last updated: 21 November 2017

Spasm pain
by David Fitz (Nov 21)

Hi Vonnie,
Many of us have had sharp pain on TKIs. It's hard to know what to do about it though. Does anything bring it on? Exercise maybe, or standing from a previous sedentary state?
David.

by vonnie (Nov 13)

Hi moving on from the post bone marrow pain i was getting in my right side buttock i know find after a leisurely walk of about an half hour then coming home and using the hoover for a short while i
Category: Uncategorised

Replies: 1

Last updated: 21 November 2017
Amit on 14 October 2017

Category: Uncategorised

Replies: 1

Last updated: 21 November 2017

Stem Cell Treatment
by David Fitz (Nov 21)

I'd be surprised if it did - and as I understand it there is no research into this as you child has a genetic mix of you and your partner so matching is not simple.
CML is genetic, but not

by Amit (Oct 14)

Dear All:
Does anyone have any idea if stem cell therapy from your newly born child either before or after you have been diagnosed with CML works ? Does anyone have any information on this as i
Category: Uncategorised

Replies: 1

Last updated: 21 November 2017
Basil from RSA on 14 November 2017

Category: Uncategorised

Replies: 4

Last updated: 21 November 2017

Hi From South Africa
by Basil from RSA (Nov 21)

Make sure that you give yourself enough time in PCRU. The good thing is that there is ongoing research to try to identify CML candidates who may have a better chance of staying in TFR. Good lick for

by Basil from RSA (Nov 21)

Thanks for the recognition. I really do wish it was as easy for all CML patients to achieve Treatment Free Remission, and retain the status for many years. But that is the goal of many Researchers

by AlastairC (Nov 16)

Basil, great to read your post. At 60, and after 10+ years on imatinib, I have started on a reduced dose with a view to stopping (blood tests permitting) in a year's time. If successful, I will be

by Olivia (Nov 15)

Basil, thank you for this wonderfully encouraging post! We may not all get to where you are, but it does give us hope. That is so very important. Congratulations
Olivia
Category: Uncategorised

Replies: 4

Last updated: 21 November 2017
ColoradoGuy on 17 November 2017

Category: Blood tests

Replies: 2

Last updated: 21 November 2017

Low WBC?
by Tbrand (Nov 21)

Hello Colorado Guy, I’m from there also. Anyhow, 30 days after diagnosis, on Gleevec, my WBC count went from 94,000 to 1000. It stayed low for about 3 months and I was put on an antibiotic during

by David Fitz (Nov 17)

Hi there, and welcome!
Dasatinib can be myelosuppressive which means it can decrease bone marrow activity a bit, resulting in fewer red blood cells, white blood cells, and platelets.
I too

by ColoradoGuy (Nov 17)

Hello all and thank you for all of your posts and information that is available on this site. I wad diagnosed three months ago with a WBC of 258 (age 37). I am taking Dasatinib 100mg and
Category: Blood tests

Replies: 2

Last updated: 21 November 2017
alanmc on 20 October 2017

Category: Side effects

Replies: 4

Last updated: 20 November 2017

Blood clots in my fingers
by chrissie (Nov 20)

A black finger which throbbed for about 3 weeks is how I got diagnosed 8+yrs ago as my GP asked for a full blood count. I still get a bruised finger - not always the same one - for what reason I don

by AlastairC (Oct 23)

Hi. I'm not sure I'd say the issues with your fingers are probably not Glivec related, but I'd certainly get any alternative causes checked. Always wary of an assumption that something is due to a

by alanmc (Oct 22)

Hi Alastair,

Thanks for your reply. So these vein issues are probably not related to Glivec then. I'll definitely have a chat with my haematologist about serum levels in my blood. Even though

by AlastairC (Oct 21)

Alan, your symptoms in your fingers are not one I've heard before, and after 10 years on Glivec/Imatinib and being active on this site for a lot of that time I've heard of most of what it can throw
Category: Side effects

Replies: 4

Last updated: 20 November 2017
Dharmesh Mehta on 16 November 2017

Category: Drug-food interactions

Replies: 4

Last updated: 20 November 2017

Imatinib & Alcohol
by Mike2584 (Nov 20)

Hi everyone,
I’m from France. My hematologist does not worry about liver issues as long as my alcohol consumption is not regular but he told me that TKI’s could be inhibited by regular and

by Dharmesh Mehta (Nov 17)

Thanks guys, I purposely avoided drinking for the first few weeks to give the treatment a chance to work and make sure that there were no major side effects from it. Whilst I don't intend on going

by AlastairC (Nov 16)

Dharmesh, for the 10+ years I have been on imatinib I have kept to the UK guidelines for alcohol consumption - no more than 14 units/week and at least three days per week with no alcohol at all. I'

by David Fitz (Nov 16)

From personal experience, the medication never affected the taste of anything for me. For you, I guess there's an easy way to find out!
Alcohol and imatinib (or other TKIs) is fine so long as your
Category: Drug-food interactions

Replies: 4

Last updated: 20 November 2017
sandy craine on 11 November 2017

Category: About CML

Replies: 0

Last updated: 11 November 2017

Interview with Prof. Jane Apperley - 2010 but still very relevant.
by sandy craine (Nov 11)

http://www.practiceupdate.com/content/cml-the-changing-landscape-of-fron...
Category: About CML

Replies: 0

Last updated: 11 November 2017
EvaH on 10 November 2017

Category: Uncategorised

Replies: 0

Last updated: 10 November 2017

Anyone experienced with giving themselves B12 injections?
by EvaH (Nov 10)

I want to do it myself but the needle looks huge.
And what about sites? My thigh muscle is the easier option but its sensitive even to strong massage, I dont think my arm is big enough :-o
Category: Uncategorised

Replies: 0

Last updated: 10 November 2017
EvaH on 9 November 2017

Category: About CML

Replies: 0

Last updated: 9 November 2017

New research on aml/CML from Switzerland
by EvaH (Nov 9)

Can't remember if I shared this before but just in case
https://actu.epfl.ch/news/new-study-into-leukemia-offers-clearer-underst...
Category: About CML

Replies: 0

Last updated: 9 November 2017
Brooks Ross on 4 November 2017

Category: Uncategorised

Replies: 1

Last updated: 7 November 2017

Tasigna - Medical Denied by FAA
by David Fitz (Nov 7)

Hi,
It seems that nilotinib is not allowed by the FAA. However dasatinib may be with some hoop-jumping.
https://www.aviationmedicine.com/medication-database/?amas_search_term=d...
Would you consider

by Brooks Ross (Nov 4)

Hello
I was recently denied my medical on account of taking Tasigna so I'm now putting together a comprehensive package as part of a review/appeal. In speaking with the local FAA Surgeon, who
Category: Uncategorised

Replies: 1

Last updated: 7 November 2017