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Jclmal on 22 October 2019

Category: Treating CML

Replies: 6

Last updated: 22 October 2019

Gleevec 11+years knee pain
by Jclmal (Oct 22)

Thanks, take magnesium and potassium supplements. Try to remember to stretch. Even with CML busy life. Not quitting, like a little less pain and more energy. Appreciate the help

by Vijay Kumar Verma (Oct 22)

One more thing check ur posture , flat feet etc.mineral deficiency like mag, potasium, calcium.

David, Scuba will guide you much better.

Just a little bit of things from my side.hope you

by Vijay Kumar Verma (Oct 22)

Hi,

It may be due to tight hamstring .Do some strech and yoga.i'm sure ur knee feel happy after 2 or 3 session.if it help plz update.

by Jclmal (Oct 22)

Thanks for reply, I walk a lot at work. It seemed strange that just last few months when I rise up from sitting great pain in the knees. If I drive more than 20 minutes hurts. I played basketball a
Category: Treating CML

Replies: 6

Last updated: 22 October 2019
Ontasigna on 20 October 2019

Category: Treating CML

Replies: 1

Last updated: 21 October 2019

Nilotinib - feeling very exhausted
by David Fitz (Oct 21)

Hi there,
I'm sorry to hear you're not feeling so good. Fatigue can be difficult to manage.
Firstly, this isn't a sign of your CML making a comeback or anything - so I hope you

by Ontasigna (Oct 20)

Hi there,
It's been 9 months since I am on Tasigna 400 mg BD and am on MMR(25-sep).
Since couple of days I am feeling very low and exhausted. Very lathergic n fatigue.
I almost have the same
Category: Treating CML

Replies: 1

Last updated: 21 October 2019
RC Kirk on 16 October 2019

Category: Treating CML

Replies: 6

Last updated: 20 October 2019

Precision dosing using concentration-controlled dosing of TKIs for CML could maximize the clinical benefit and minimize toxicity
by AlastairC (Oct 20)

Hi
This is the link to Prof Flanagan's team's paper on Pubmed.

by mamodei (Oct 19)

Interesting. I had quite a few side effects on the nilotinib, was switched to dasatinib after 2 months, and after 2 months on that my dose was lowered to 50 mg due to side effects. I

by RC Kirk (Oct 19)

Thanks Alastair, I had the plasma level checked once when I was taking 200mg/day. I guess my result was pretty much in line with the dose. Here's the result from that test:

by AlastairC (Oct 18)

I asked a question about therapeutic drug monitoring at last year's patient day, in I think the last Q&A session. Through my work some years earlier in toxicology I was aware of work
Category: Treating CML

Replies: 6

Last updated: 20 October 2019
SamandRich on 16 October 2019

Category: Treating CML

Replies: 3

Last updated: 18 October 2019

Myelostat
by David Fitz (Oct 18)

Sam,
Bosutinib often works for patients who have had issues with other TKIs. The evidence seems to suggest it is somewhat more gentle in terms of side effect profile. Omacetaxine just isn't

by SamandRich (Oct 18)

Hi David

Sorry for the late reply, also nilotab, both not able to tolerate and started getting signs of toxicity.

Thanks for reply

Sam

by David Fitz (Oct 16)

Hi there,
I don’t have any experience with this medication, but others may know it better by it’s other names - Omacetaxine or Synribo, but if I’m reading things right this is an

by SamandRich (Oct 16)

Hi guys, hope you are all doing well. I've just had my medication changed to myelostat and read that it has severe nausea and hair loss as some of the side effects , has anyone else experienced side
Category: Treating CML

Replies: 3

Last updated: 18 October 2019
Nazia on 14 October 2019

Category: Treating CML

Replies: 9

Last updated: 16 October 2019

Currently diagnosed CML
by David Fitz (Oct 16)

Don't just accept the suffering ... if it continues, or gets worse talk to your doctor about trying a different TKI.
In the meantime, experiment with heat (hot water bottles, hot bath) or cold (

by Nazia (Oct 16)

Thanks David,

My pain is constant not as cramps

Its nor too sharp neither mild it is moderate but keeps me restless

I really want to get rid off it because it has disturbed my

by David Fitz (Oct 16)

Hi again Nazia,
Is the pain constant, or does it come and go? When I had sharp pains at the start of my treatment, they would be not too bad and then suddenly for a very short time extremely painful

by David Fitz (Oct 16)

Well, it’s just plain old codeine - a simple opiate. It works well on pain. Addiction problems with opiates happen when taken for a long time, and in the absence of actual pain to deal with. I
Category: Treating CML

Replies: 9

Last updated: 16 October 2019
ian hinley on 17 October 2018

Category: Treating CML

Replies: 65

Last updated: 12 October 2019

Starting TFR in November after 9 years of daily drugs
by ian hinley (Oct 12)

Yes am taking 4 Brazil nuts daily and also supplementing vitamin d. Hopefully just bouncing and next month will be a key result 🤞

by scuba (Oct 12)

Ian - There does seem to be a trend, but it is still below the "resume" threshold.
Are you taking selenium? (200 mcg per day). Recent research suggests selenium interferes with leukemic

by ian hinley (Oct 12)

Results today not so good up to 0.084 from 0.030 last month but still below 0.1 so have couple of months drug free at least ahead. 11 months TFR now, so will make it over a year drug free but still

by scuba (Sep 19)

You are in the noise of the test. You are looking very stable.
Also - we don't know if your levels are now the result of normal bcr-abl formation that happens naturally in normal population. In
Category: Treating CML

Replies: 65

Last updated: 12 October 2019
Cdonohue95 on 10 October 2019

Category: Treating CML

Replies: 2

Last updated: 10 October 2019

5 months with CML
by Cdonohue95 (Oct 10)

Thank you for that and I will deffently talk to my doctor. my question is how much the 50mg seems to be more effective then 70 or 100mg? They keep telling me that I am the youngest patient that they

by scuba (Oct 10)

Ask your doctor to lower your dose further to 50 mg - perhaps lower to 40 mg and monitor bcr-abl progress. There is excellent liklihood you will continue to trend lower (perhaps even faster than you

by Cdonohue95 (Oct 10)

Hello all.
My name is Chris, I was 23 when I was told the news. just a few months before my birthday. I am 24 now and had 240k WBC since then my WBC is floating between 4 to 6k. my latest BCR ABL as
Category: Treating CML

Replies: 2

Last updated: 10 October 2019
Ontasigna on 1 October 2019

Category: Treating CML

Replies: 0

Last updated: 1 October 2019

dextromethorphan wit Nilotnib
by Ontasigna (Oct 1)

Hi All.,
Has anyone tried taking dextromethorphan when on Nilotinib. I had a check on Drug interaction - Found it to be moderate.
--KY
Category: Treating CML

Replies: 0

Last updated: 1 October 2019
Ontasigna on 28 September 2019

Category: Treating CML

Replies: 3

Last updated: 30 September 2019

RT PCR slightly increased
by Ontasigna (Sep 30)

Hi Scuba/Alastair,
Thanks so much for your valuable information and suggestion.
Regards

KY

by scuba (Sep 28)

Any value less than 0.01% has little meaning. It's in the noise of the test.
For information: They could run two identical tests from one sample of blood and measure PCR one log apart. That is a

by AlastairC (Sep 28)

Hi
The difference between 0.0065% and 0.0078% is not statistically significant. The variabilty of the PCR test process at that very low level is around +/-50% of the measured value. The two results

by Ontasigna (Sep 28)

Hi all,
Today I received my PCR report. There is a slight increase in RT PCR.
I just have missed a single dose. Is it the effect of missing a dose. Am I doing anything wrong?

Please suggest.
Category: Treating CML

Replies: 3

Last updated: 30 September 2019
RC Kirk on 18 September 2019

Category: Treating CML

Replies: 2

Last updated: 27 September 2019

TFR - You Can Do This At Home If You Read The Instructions
by Karinne (Sep 27)

Thank you so much for this article. It is interesting to read about the suggestion for monitoring:
“monitoring of peripheral blood transcripts every 4-6 weeks for 6-8 months, then bimonthly

by johnw1001 (Sep 27)

Hi All,
I think that this article is worth a few comments on several bases.It is fairly well recognised by most clinicians that to be a candidate for TFR and discontinuation then one needs a fairly

by RC Kirk (Sep 18)

I saw this on Facebook and thought the title was catchy.
Discontinuation Of Tyrosine Kinase Inhibitors In Patients With Chronic Myelogeneous Leukemia – You Can Do This At Home If You Read The
Category: Treating CML

Replies: 2

Last updated: 27 September 2019
Sd on 25 September 2019

Category: Treating CML

Replies: 4

Last updated: 26 September 2019

Need some info and a little hope
by Sd (Sep 26)

Hi Vicky,
I appreciate your encouragement. I have always been focused on nutrition, but particularly now. I lost 18# so it is critical that I consume healthy calories. I have always take a multi

by VickyK. (Sep 26)

Hi Sd,

It will get better I promise!!!I am on nilotinib and had some side effects including muscle pain headaches hair loss etc but after third month of medication I started feeling better.

by Sd (Sep 25)

Thanks for your reply. I have done extensive reading, and also consult with the docs about my questions. I have a health care background, which helps with reading the information. It is so wonderful

by AlastairC (Sep 25)

Hi and welcome to the club no-one asked to join. The range and duration of side effects of the drugs varies hugely between people. Many people on Glivec/Gleevac/Imatinib do at least ok and a
Category: Treating CML

Replies: 4

Last updated: 26 September 2019
Snowman35 on 21 September 2019

Category: Treating CML

Replies: 12

Last updated: 24 September 2019

Does anyone has this fear?
by kat73 (Sep 24)

You are very welcome. We are ALL crazy in our own ways.

by Snowman35 (Sep 23)

Ahahaha no Kat73 I don't wash them!I do exactly what you say but some times you say if this if that(this is OCD) Your answers was very helpful!Every time I have this fear I ll read your comments! I

by kat73 (Sep 23)

This seems like a very specific and narrow and therefore EASY problem to fix. Your concern about actually introducing an appreciable amount of water into the pill container is legitimate.

by Snowman35 (Sep 22)

Kat73 I worry if while I take the pill from the bottle the other pills in the bottle get wet from my hands! I am not worried about the pill I take that time....Sorry for writing this again but I
Category: Treating CML

Replies: 12

Last updated: 24 September 2019
Snowman35 on 24 September 2019

Category: Treating CML

Replies: 2

Last updated: 24 September 2019

Is limejuice forbidden?
by Snowman35 (Sep 24)

Thanks David for your quick response!!

by David Fitz (Sep 24)

Really, just avoid grapefruit when it comes to fruit. Pharma companies are very risk averse, so if there was risks with lemons or limes they would be stated stated in the patient information leaflet

by Snowman35 (Sep 24)

Hi again!

I accidentally read to webmd that lime should be avoided. I have asked my doctor several times and told me that the only fruit I should avoid is grapefruit...what is your opinion
Category: Treating CML

Replies: 2

Last updated: 24 September 2019
Jenny9391 on 21 September 2019

Category: Treating CML

Replies: 8

Last updated: 21 September 2019

Second drug to fail... worried mum
by ColoradoGuy (Sep 21)

I was not aware that was the case. Probably for the possible side effects I would imagine but maybe a trial on low dose with required approvals is an option. In any case mutation testing will help

by David Fitz (Sep 21)

Ponatinib doesn’t hold an indication for paediatric CML - so it is not as simple as an adult case.
That’s not to say it doesn’t work in children with T315i, it’s just

by scuba (Sep 21)

It's interesting some doctors are now more aware of vitamin D's role in the immune system and blood development. Bone and blood go together. They are from the same embryonic cells driven

by Jenny9391 (Sep 21)

Theres been no mention about a growing number of blast cells. They have mentioned the vitamin d to me and she now takes a supliment daily. I didnt understand the full extent of why it was important
Category: Treating CML

Replies: 8

Last updated: 21 September 2019
Ontasigna on 17 September 2019

Category: Treating CML

Replies: 1

Last updated: 17 September 2019

Chronic Cough - Antibiotic/Tasigna
by David Fitz (Sep 17)

General advice would be to temporarily stop nilotinib if there is no alternative to this particular antibiotic. Is your doctor aware of the cardiac related potential interaction?
David.

by Ontasigna (Sep 17)

Hi All,
It's been 2 weeks that I have wet cough. I had been to doctor. He has prescribed me Antibiotics (AZithromycin) and montelukast.
It looks like azthromycin should not be taken when on Tasigna
Category: Treating CML

Replies: 1

Last updated: 17 September 2019
Sarah63 on 15 September 2019

Category: Treating CML

Replies: 0

Last updated: 15 September 2019

Selenium -
by Sarah63 (Sep 15)

Hello All of you
Category: Treating CML

Replies: 0

Last updated: 15 September 2019
DKurup on 23 August 2019

Category: Treating CML

Replies: 2

Last updated: 25 August 2019

Stopped Imatinib under Self Prescription.
by DKurup (Aug 25)

Thank you Alaistair.
I did explore the option to ask for Wockhardt, but the pharmacist kept pushing for Accord (not sure why).
Eitherways, here I am and looking for my first blood test in 2

by AlastairC (Aug 23)

I wonder if it might have been worth trying 200mg of the generic which gave you the least side effect - ?Wockhardt. That would put you on the Destiny protocol which gave a higher chance of

by DKurup (Aug 23)

This one is in continuation to my previous question- https://cmlsupport.org.uk/thread/13192/no-more-sandoz-others-cause-side-... - however thought it is worth a new thread.
After
Category: Treating CML

Replies: 2

Last updated: 25 August 2019
Ontasigna on 19 August 2019

Category: Treating CML

Replies: 4

Last updated: 19 August 2019

Hemoglobin dropping consyantly
by Nimbus2 (Aug 19)

Here at the centre of England the range for men is 13.3 to 16.6 g/dL.
I understand that the range for women the top and bottom figures are lower.

by Sueso (Aug 19)

Hi
Hemoglobin Standard Range 11.7 - 16.1 g/dL
Sue

by Ontasigna (Aug 19)

No, I am not sure.
Also I am not aware of "very mild normocytic normochromic anaemia"
Anything to be worried about?

by Nimbus2 (Aug 19)

My HGB has dropped to 111 g/L. My haematologist is virtually certain it is not iron deficiency. Described as "very mild normocytic normochromic anaemia".
Are you sure that your anaemia is
Category: Treating CML

Replies: 4

Last updated: 19 August 2019
JacqJohn on 16 August 2019

Category: Treating CML

Replies: 3

Last updated: 17 August 2019

18months into Glivec (Imatinib) - PCR >0.1%
by JacqJohn (Aug 17)

Hi,
im fairly tolerating well in terms of side effects on Glivec (just typically daily loose stools and the standard normal tiredness). Otherwise I’m quite ok. And yes, I’ve

by scuba (Aug 16)

Tasigna and Glivec work the same way in terms of how the drug binds to the active site in CML leading to cell death. Tasigna binds more tightly and is generally more effective than Glivec because of

by AlastairC (Aug 16)

Hi,
How are you doing with side effects on Glivec/Imatinib? I plateaued at about 0.3% for a few months and then got to less than 0.1% in a big jump. I issed the guideline but I didn't know - the

by JacqJohn (Aug 16)

Hi All,
I’ve been on Glivec 400mg for the past 18 months after discovering intolerance to Tasigna during initial diagnosis of CML.
My BCR-ABL results went from 1.4% —> 0.4% and after
Category: Treating CML

Replies: 3

Last updated: 17 August 2019
Eda on 25 July 2019

Category: Treating CML

Replies: 13

Last updated: 12 August 2019

Tasigna - very low pallet count, low white cells count and granulocytes count
by Eda (Aug 12)

Hi Chris,
I did not realise that your wife was also treated in Poland and I am glad to hear that the treatment she received was good.
My mum is being treated by a haematologist who apparently did

by gof (Aug 12)

Dear Edyta,
you can find more deep explanation of the CML in Polish in this Ph.D. thesis: http://www.wbc.poznan.pl/dlibra/plain-content?id=157731
We cannot say bad word for my wife's

by Eda (Aug 11)

Hi David,
Thank you for sharing that with me. She has had two biopsies so far so one would hope that any additional abnormalities would have been discovered... However, during my dad's very long

by Eda (Aug 11)

Hi Chris,
Thank you very much for your response & for the links. It is really really helpful.
I was waiting for my mum to obtain a copy of her latest molecular test results (QPCR). It was done
Category: Treating CML

Replies: 13

Last updated: 12 August 2019