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Leigh Pettus on 31 December 2017

Category: About CML

Replies: 1

Last updated: 31 December 2017

Grateful to have found this!!!
by Ellie Regina Grey (Dec 31)

Hello Leigh,
Welcome to the forum, CML aside.
My own diagnosis was in December 2016 and was immediately put on nilotinib 300mg twice daily thereafter.
To your posted concern on your leg pain,

by Leigh Pettus (Dec 31)

I was diagnosed in June 2016. Started Tasigna aug 216. Things went well up until June 2017. I am having terrible pain in right leg, have found no relief for it hoping someone here has advice.
Category: About CML

Replies: 1

Last updated: 31 December 2017
Bims Akomolafe on 29 December 2017

Category: Children & young people

Replies: 2

Last updated: 30 December 2017

children with CML
by Bims Akomolafe (Dec 30)

Thank you very much Irishmammy for the advice. I will try the hot water bottle for him and discuss it with the haematologist next week.
regards,
Bims

by Irishmammy (Dec 29)

Hello there, I'm a mummy to a little one aged 7 who was diagnosed 4 years ago. My best source of information was our fantastic consultants in our local centre. My daughter is on a tki and we manage

by Bims Akomolafe (Dec 29)

Hi,
My son (12yrs old) was diagnosed with CML in November 2017. He is currently on Imatinib 400mg and we were told by the doctors that he will live a normal life. We are still trying to get our
Category: Children & young people

Replies: 2

Last updated: 30 December 2017
Batku on 20 November 2017

Category: Uncategorised

Replies: 11

Last updated: 12 December 2019

Hi! My introduction
by ColoradoGuy (Dec 22)

Batku
I was diagnosed August 2017 and do remember having sleepless nights. I will say that I no longer have them and believe it will pass for you as well. This is a great place for information.

by T and M (Dec 21)

Dear Batku,
We are on the journey with you. My husband was diagnosed mid September, 2017 and we just started using this site ourselves. It is foreign, there is a lot to take in, but in

by David Fitz (Dec 5)

Hi!
Some doctors don't do bone marrow tests at all, even at diagnosis. PCR tests from peripheral blood are often enough to tell the doctor what they need to know.
Complete cytogenetic response (CCyR

by Amit (Dec 4)

Hi David just a quick question the 6 month bcrabl test to determine complete cytogenic response does one have to also do another bone marrow as well or is bcrabl enough?
Category: Uncategorised

Replies: 11

Last updated: 12 December 2019
sg3 on 21 December 2017

Category: Food & fitness

Replies: 2

Last updated: 22 December 2017

power plates
by sandy craine (Dec 22)

I reckon most kinds of exercise would be beneficial when CML is stable. At diagnosis, it would be best to be cautious due to possible problems with palates and possible enlarged spleen etc.

by David Fitz (Dec 22)

The vibrating exercise machines? Can't see any reason at all why not. They're pretty good, even if it is really funny trying to talk while using one!
David.

by sg3 (Dec 21)

Bit of a strange one ,but does anyone know if you can use power plates with CML ?
Category: Food & fitness

Replies: 2

Last updated: 22 December 2017
MartinZA on 21 December 2017

Category: Side effects

Replies: 1

Last updated: 21 December 2017

Question on drug switching
by David Fitz (Dec 21)

Hi Martin,
Sorry for the hurried response, but here's my quick take on things:
1. Switching to imatinib is generally not done because historically imatinib is where patients started. So

by MartinZA (Dec 21)

Good morning everyone
Yesterday I had my two-year follow-up appointment with my haematologist and I had two pieces of news, one good and one bad.
Good news: after two years, I have finally reached
Category: Side effects

Replies: 1

Last updated: 21 December 2017
HelenS on 30 November 2017

Category: Blood tests

Replies: 3

Last updated: 21 December 2017

BCR-Abl level up
by T and M (Dec 21)

Hi Helen. I hope this finds you more settled with what you are facing. My husband has been on Imatinib for 2 and 1/2 months now. He started at 89.7%, went to 34.43% and the last

by EvaH (Dec 4)

Hey there
Sorry you are feeling stressed by the numbers, however do remember, at some point they are just numbers...indicators! The important thing is how you FEEL physically and if you can get on

by Olivia (Dec 1)

I can understand your concern, Helen.
It may be that your second "miraculous" result was less than accurate, as this sometimes happens and the other two results show a reasonable decline.

by HelenS (Nov 30)

I was diagnosed in January this year. My BCR-ABL at diagnosis was 18.9%.
At 3 months on Imatinib it was 12.6%.
At 6 months 0.045% which my consultant said was a miraculous result.
Then
Category: Blood tests

Replies: 3

Last updated: 21 December 2017
Sue.J on 16 December 2017

Category: Side effects

Replies: 1

Last updated: 21 December 2017

Teeth
by T and M (Dec 21)

Hi Sue. My husband has been on Imatinib for about 2 1/2 months now and I noticed first his teeth, especially the molars, were looking brown. We have not yet seen a dentist and it is on

by Sue.J (Dec 16)

Hi folks, I have been taking imatinib for 7 week now (diagnosed september) and am responding well, I have however noticed my teeth are becoming increasingly discoloured, I am finding this quite
Category: Side effects

Replies: 1

Last updated: 21 December 2017
Jazzes on 18 December 2017

Category: About CML

Replies: 3

Last updated: 21 December 2017

Side effects
by Jazzes (Dec 21)

Hi, Nigel / chrissie

Thank you for the response

We will definately look into the magnesium spray ... thanks ,

I'll give you some info on his bone marrow report... upon

by chrissie (Dec 19)

I would like to repeat what Nigel has said. Why 800mgs? 400mgs is the normal dosage for Imatinib/Gleevic. If you don't know why 800 was prescribed I would ask your consultant. It may, of course,

by nigel (Dec 18)

Hi and welcome so to speak to the group. Muscle, bone and joint pain are quite common with Glivec, especially early on, for many it does settle down. I used magnesium spray for muscle pain, which

by Jazzes (Dec 18)

Hi all
My husband was diagnosed on Aug 26 2017 CML he has been on gleevec for the past couple of months .. he's been complaining of joint pains which is affecting his daily lifestyle . I have told
Category: About CML

Replies: 3

Last updated: 21 December 2017
David Fitz on 20 December 2017

Category: Uncategorised

Replies: 1

Last updated: 21 December 2017

Spam on the forum - apologies
by MartinZA (Dec 21)

Hi David
Thank you for all the efforts you are making in preventing this spam! It blows my mind that someone would be so cruel and thoughtless as to spam a cancer forum, but hey... the world

by David Fitz (Dec 20)

We’ve been experiencing some heavy-handed spamming from one individual over the last few days. Sorry if this has made it difficult to find the content you wanted on the forum.
We’ve put some extra
Category: Uncategorised

Replies: 1

Last updated: 21 December 2017
chrissie on 20 April 2017

Category: Uncategorised

Replies: 7

Last updated: 20 December 2017

Osteoporosis anyone??
by alliswell (Dec 20)

chrissie thanks for the answer ,
i am not sure we are making the right choice but we decided to not to take any medicine for osteoporosis .(except vitamin d and calcium supp) modifications for

by chrissie (Nov 20)

Sorry for delay - just seen your post. Yes I was taking Alendronic Acid once a week since April but it made my "dry" eye and red eye worse than usual. (It is already a side effect of Imatinib so

by alliswell (Nov 4)

chrissie
i am not sure you can see this or not . maybe i should open a new thread
last month my mothers PTH problem has been solved . now our doctor want to start osteoporosis treatment .

by chrissie (Apr 23)

Thank you everyone who answered. I feel better about taking the supplements now - assuming that is what my GP will prescribe when I see her on Friday. I assume the calcium is also OK.
Best
Chrissie
Category: Uncategorised

Replies: 7

Last updated: 20 December 2017
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