You are here

Forum

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
Sunita Parhar on 16 August 2019

Category: Side effects

Replies: 3

Last updated: 16 August 2019

Ponatinib
by AlastairC (Aug 16)

Sunita you're welcome. Bone Marrow Biopsy is he right thing to do and take decisions when you have the results. Let us know what happens.
Good luck
Alastair

by Sunita Parhar (Aug 16)

Hi Alastair, you’re absolutely right - I got the name of the drug wrong. We are doing a bone marrow biopsy next week to determine mutations. Thank you for the suggestion.

by AlastairC (Aug 16)

Hi Sunita, can you check the name of the drug - I think it may be ponatinib, which is one the recognised newer drugs for CML patients. Also has your husband had any mutation testing done - this

by Sunita Parhar (Aug 16)

Hi, my husband has been on Nilotinib for almost 2 years now but seems to be developing a resistance to it. The doctor has mentioned a drug called Pinotinib as an option. Has anyone been on it? Were
Category: Side effects

Replies: 3

Last updated: 16 August 2019
ThomasS on 14 August 2019

Category: Uncategorised

Replies: 4

Last updated: 16 August 2019

50mg of Sprycel
by AlastairC (Aug 16)

Tom, good call. As long as you don't have an upward drift in the next couple of test results, I think as Scuba says it is perfectly feasible to try 20mg. If you're results are stable below 0

by ThomasS (Aug 15)

Scuba and Alastair, thank you for your reply and all the info. I talked with my Dr and we are going to stay at 50mg and re test in 6-8 weeks. Hopefully the counts will come back to 000. It took me

by AlastairC (Aug 14)

Tom, I'm 100% with Scuba that you don't want to to go back up to 70mg. I have seen this happen on the forum where a lab has a new and shiny piece of equipment which is more sensitive than

by scuba (Aug 14)

Tom,
0.007 is indistinguishable with "undetected" both statistically and in absolute terms. You should continue with your current dose and test again in six weeks to see if there is a
Category: Uncategorised

Replies: 4

Last updated: 16 August 2019
Tanya Cuffe on 14 August 2019

Category: Uncategorised

Replies: 2

Last updated: 16 August 2019

Next level fatigue...
by Tanya Cuffe (Aug 16)

Thank you for that,yes I took a good B today so hopefully will help.I often take ginseng with guarana and then add pseudoephedrine and that keeps me awake but then I don’t sleep!Will try stick

by Tazdad (Aug 16)

I took a really good B vitamin. I used the Now brand and it seemed to help. It Now 100 B complex. It did take a little while to get enough in my system to feel the difference. I still struggle with

by Tanya Cuffe (Aug 14)

Hey friends,Fatigue on 50mg Sprycel getting harder and harder to tolerate. Am exhausted after sweat drenched nights wherein I wake up at least 5 times.Constant fatigue now along with mood issues.
Category: Uncategorised

Replies: 2

Last updated: 16 August 2019
johnw1001 on 15 August 2019

Category: Uncategorised

Replies: 2

Last updated: 15 August 2019

Smile. Amazon-dont forget
by David Fitz (Aug 15)

Thank you John!
The instructions are here:
https://cmlsupport.org.uk/article/help-cml-support-registering-amazonsmile
We don’t get much from this, but everything helps. Between 1st April

by MarkP66 (Aug 15)

Hi John
Great idea and given my wife’s online spend it should yield a nice contribution
Mark

by johnw1001 (Aug 15)

Hi All,
Amazon has a scheme that if you register your charity with them then for every purchase made they will contribute a small proportion -as a regular user my contribution so far totals over
Category: Uncategorised

Replies: 2

Last updated: 15 August 2019
Steven Allan on 12 March 2007

Category: Uncategorised

Replies: 21

Last updated: 15 August 2019

My feet hurt...
by Nimbus2 (Aug 15)

Thank you, Alan, I agree strongly with you considered observations below.
Alan said
With other side effects I am getting, I always ask myself:
1. Is the symptom really due to imatinib?

by AlastairC (Aug 14)

Alan, the threads show up on the forum in the order of the latest post, so if you post on an old thread it comes to the top of the listing again. If you are looking for old threads the search

by AlanG (Aug 14)

Dear Nimbus,
Thank you for your interesting comments, and from others in 2015. There seems to have been a four year silence until now!
The article you referred to was informative, and has set me

by Nimbus2 (Aug 11)

There are papers suggesting that imatinib is a broad-based kinase inhibitor and far less selective than second generation TKIs. The thought is imatinib is acting as a cretatine kinase inhibitor.
Category: Uncategorised

Replies: 21

Last updated: 15 August 2019
johnw1001 on 29 July 2019

Category: Drug-drug interactions

Replies: 3

Last updated: 14 August 2019

Imatinib and radiation therapy-interaction
by johnw1001 (Aug 14)

Thanks for the helpful response as this offers some reassurance that stopping for a few months is not that unusual and also not with too many great risks.
With best wishes
John

by kat73 (Aug 13)

I have had to go off Sprycel several times for pleural effusions to resolve. Starting from MR4 I lost MMR in about 9 weeks off drug. Others have been able to go much, much longer.

by johnw1001 (Aug 13)

Hi All,
It has been decided following a discussion between my hema-oncologist and cliniical oncologist/radiation expert that there is a possibility for the imatinib to potentiate radiation toxicity.

by johnw1001 (Jul 29)

Hi All ,
Has anyone who is on imatinib or another tki ever had radiation therapy of any kind administered at the same time for another malignancy and if so was there any interaction such as
Category: Drug-drug interactions

Replies: 3

Last updated: 14 August 2019
MANNI OBEROI on 12 August 2019

Category: Other conditions

Replies: 4

Last updated: 14 August 2019

Just know that I have cml cp
by MANNI OBEROI (Aug 14)

Thanks shekhar....thanks alot dear

by Shekhar (Aug 14)

Hi Ramandeep,
I was diagnosed when I was at the age of 17, now i have been taking Imatinib for almost 14yrs. I am married have children’s. I have any problem. CML has become a part of life.
Do

by MANNI OBEROI (Aug 12)

Thanx alot David fir your support.....thanx alot

by David Fitz (Aug 12)

Hi Ramandeep,
Do you have any details of the report of your diagnosis? But since you say you are in “CP” - chronic phase, then that is very good news. Have they started you on
Category: Other conditions

Replies: 4

Last updated: 14 August 2019
Tanya Cuffe on 6 August 2019

Category: Uncategorised

Replies: 21

Last updated: 13 August 2019

0.0025 2nd month on 50 mg Sprycel
by scuba (Aug 13)

(apologies for thread hijacking ... )
Pat,
I am trying to find the research I read some time back regarding leukemic stem cell pool (LSC) and CML treatment free remission. What I recall is for those

by hannibellemo (Aug 13)

kat73, is it that obvious?! 😂 I had such a horrible time with Sprycel the first 6 months that the thought of going through that again with yet another TKI ten years later is so depressing!
I

by kat73 (Aug 12)

Yes, Tanya, you can cut the 50's in half with a pill cutter box from the pharmacist. Good luck with the mystery lump. I had an enlarged gland under my jawline and was scared to bits (

by scuba (Aug 12)

My doctor told me taking sprycel every day is preferred over every other day due to its fast metabolism. Taking 20 mg every other day is not the same as 10 mg per day. To achieve half the dose, one
Category: Uncategorised

Replies: 21

Last updated: 13 August 2019
iffat on 12 August 2019

Category: Uncategorised

Replies: 5

Last updated: 13 August 2019

Imatinib and drugs interaction
by iffat (Aug 13)

Thank you

by iffat (Aug 13)

Thank you

by iffat (Aug 13)

Thank you

by johnw1001 (Aug 12)

Hi there,
In addition to Alistairs suggestion I always use the work undertaken by some Swiss researchers who have published in Blood Journal an article titled "Drug interactions with the
Category: Uncategorised

Replies: 5

Last updated: 13 August 2019
OggabetF on 3 August 2019

Category: Uncategorised

Replies: 12

Last updated: 12 August 2019

Hello All - New Member
by scuba (Aug 12)

Sprycel is an SRC inhibitor (in addition to other tyrosine kinases). SRC is important in hair growth regulation (and skin).
https://www.ncbi.nlm.nih.gov/pubmed/19060248
The lower dose you can use

by OggabetF (Aug 12)

WOW! This is really is a small world LoL. I suppose even more for folks with CML!
As a matter of fact whenever I was first diagnosed, my hematologist suggested that I visit Dr. Cortes in

by scuba (Aug 7)

Fred,
How ironic ... my doctor was recently named Director of the Georgia Cancer Center (Jorge Cortes). Look him up. I don't know if he will be taking patients, but worth a try for consultation

by OggabetF (Aug 7)

Thanks for the response Scuba!
I wonder if I could have your oncologist consult with mine concerning the dosage adjustments/reductions?
My next scheduled visit with my oncologist is in 6
Category: Uncategorised

Replies: 12

Last updated: 12 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
AlanG on 11 August 2019

Category: Uncategorised

Replies: 1

Last updated: 11 August 2019

New member to Forum
by Sueso (Aug 11)

Hi
Welcom to the CML support .Nothing impossible ,you will win the bottle over CML soon.
Good luck
Sue

by AlanG (Aug 11)

Hi everyone. My first post on the Forum. I was diagnosed with CML on Maundy Thursday this year. An astute GP decided to do a blood screen as I had a number of odd symptoms and the next day
Category: Uncategorised

Replies: 1

Last updated: 11 August 2019
Kara Morgan Morton on 9 August 2019

Category: Uncategorised

Replies: 0

Last updated: 9 August 2019

Anyone on 20mg of sprycel?
by Kara Morgan Morton (Aug 9)

How were you put on 20mg of sprycel? I am one year and 3 months into taking sprycel. I am at 0.000.... praise the Lord. I was on sprycel and ventoclax trial for 7 weeks before getting really sick.
Category: Uncategorised

Replies: 0

Last updated: 9 August 2019
MartinZA on 7 August 2019

Category: Treating CML

Replies: 3

Last updated: 7 August 2019

Going to start fasting on imatinib
by Sueso (Aug 7)

Hi and good luck in your fasting.
I take my imatinib 400 mg after my last meal at 8 pm and this couple days I`m suffering from acid reflux and stomach pain from imatinib and im taking 40 mg

by MartinZA (Aug 7)

Hi scuba
Thanks a lot for the detailed information! I'm so glad I asked as I didn't know that there was a limit as to how many Brazil nuts to eat. I'm going to eat four a day

by scuba (Aug 7)

Hi Martin,
No nausea taking imatinib on an empty stomach? Lucky you!
8 brazil nuts a day could be too many.They are loaded with selenium. Each nut averages 50 ug - some nuts as high as 100 ug. For

by MartinZA (Aug 7)

Hi everyone
After reading the many interesting and informative posts by scuba and others on fasting, selenium, curcumin, Vitamin D and imatinib, I have decided to try my own experiment. I am
Category: Treating CML

Replies: 3

Last updated: 7 August 2019
Trevorp93 on 7 August 2019

Category: Treating CML

Replies: 2

Last updated: 7 August 2019

Next Step after pcr results need advice
by AlastairC (Aug 7)

Hi Trevor. While you have an upward trend the overall level is still pretty low. If your next test result is upwards again, I think mutation testing might be a plan. From the results of that you and

by ColoradoGuy (Aug 7)

I can't speak to all of your questions but I went from 0.111 to 1.2 then switched from Sprycel to Tasigna. First results are 0.36 so it can come back down. Of course I want below 0.1 soon. I know

by Trevorp93 (Aug 7)

Hi everyone, My PCR result went up 0.03 from 0.054 to 0.088 Can anyone give me ideas on what's my next step is? ive been on sprycel for 18 months now. Should i be concerned on my test results
Category: Treating CML

Replies: 2

Last updated: 7 August 2019
Sueso on 1 August 2019

Category: Uncategorised

Replies: 6

Last updated: 6 August 2019

I just been diagnosed with CML
by onekayaker (Aug 6)

Sue,

Hello, I was DX in June last year. I was in the process of actually moving back to Houston when this happened with a random blood work. I had just retired to spend time with

by MarkP66 (Aug 5)

Hi Sue .. how are things going?
Im 8 days in and suffering from bone and joint pain with a little Diarrhoea and sickness and get tired easily
Its hard to get motivated but I’m intent on

by Sueso (Aug 1)

Dear Gof
Sorry to hear about your wife issues I hope she will feel better soon.After I diagnosed with CML I felt my stomach heavy and swollen and abdominal pain
I did colonoscopy and endoscopy the

by Sueso (Aug 1)

Thank you Mark for reply.
Im taking 400 mg a day ,I was thinking to go see herbalist but when my insurance company approved my medigation I started right away. I have appointment with my
Category: Uncategorised

Replies: 6

Last updated: 6 August 2019
gof on 1 August 2019

Category: Uncategorised

Replies: 7

Last updated: 5 August 2019

MMR update
by gof (Aug 5)

Thank you for your input. After we will discuss with my wife's hematologist I will all let you know about the outcomes. I wonder why sometimes it happen and other day not.
Best regards /

by Nimbus2 (Aug 5)

I got the impression initially from some consultant haematologists that they considered the side effects suffered from different generics to be "in the minds" of their patients. I was

by Sueso (Aug 2)

Hi Chris
I`m so glad your wife get better result, and I hope she will be better soon .For the weekness and diarrhea I make Carrot and beet juice every day .
Good luck
Sue

by gof (Aug 1)

David, thank you. That is interesting.
Here in Poland where we live, hospitals are issuing once in a while public tenders for imatinib. They can change drug if there are side effects etc. But I know
Category: Uncategorised

Replies: 7

Last updated: 5 August 2019
Brenda21 on 30 July 2019

Category: Uncategorised

Replies: 2

Last updated: 5 August 2019

imatinib Sandoz Please help!
by David Fitz (Aug 5)

Hi there.
I had severe (grade 3/4) bone pain and muscle pain when on imatinib. It was a dull ache, with intermittent shooting pain.
After trying everything, with no improvement, the doctor and

by AlastairC (Jul 30)

Hi Brenda,
This link is the talk from last year's patient day on side effects. Sebastian Francis ( a consultant from Sheffield) talked a lot about the side effects of imatinib. Hope that helps.

by Brenda21 (Jul 30)

Hi,
looking for some help please my husband has been on roller coaster since diagnosis on 15july this year, he has been given imatinib sandoz to take one a day and has since the 18th July this
Category: Uncategorised

Replies: 2

Last updated: 5 August 2019
MarkP66 on 31 July 2019

Category: Uncategorised

Replies: 4

Last updated: 5 August 2019

Quick question on BCR-ABL numbers
by David Fitz (Aug 5)

Hi Mark,
39.8% is at the lower end of a PCR test at diagnosis. I was 321% for example - but it doesn’t really matter as for the purposes of testing and prognostic indicators we are all treated

by Nimbus2 (Aug 5)

I had bone marrow taken at diagnosis but the RNA was stored and no test performed. The blood test at diagnosis was Fish only, 92%. I was told that FISH trumps BCR-ABL until complete

by AlastairC (Jul 31)

Hi Mark
The most important thing you're looking for is to be on a downward trend for PCR results. The guidelines for optimum response listed above are pretty much the same both sides of the

by ColoradoGuy (Jul 31)

Hello - Sorry you had to join this forum but you will find a lot of good information. I use the following (pg. 30) because I am in US but European guidelines are available on this website as
Category: Uncategorised

Replies: 4

Last updated: 5 August 2019