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mamodei on 15 March 2022

Category: Side effects

Replies: 5

Last updated: 4 May 2022

Muscle pain on Sprycel?
by Sherley (May 4)

Hi. I have muscle pain all the time in one leg. I will definitely try the magnesium too.

by mamodei (May 3)

A combination of drinking more, and using magnesium oil when needed, has helped get this muscle pain under control. I take magnesium orally as well.

by sandy craine (Mar 16)

Hi Maria,
You may be suffering from myofascial pain syndrome... see here
I have recently suffered very similar issues with muscle and joint pain. I have found several things that have helped:

by mamodei (Mar 16)

Thank you. I do think I've been drinking less water so will make sure I'm remembering to drink more. I have magnesium oil which I've used for cramping in the past. I
Category: Side effects

Replies: 5

Last updated: 4 May 2022
Sherley on 1 May 2022

Category: Treating CML

Replies: 2

Last updated: 4 May 2022

Skin rash with blisters and blurry vision
by Sherley (May 4)

Hi Mamodol. Thanks for responding. I’ve tried several drops with no improvement. Also did you apply a cream to the rash to feel better? I saw my my oncologist

by mamodei (May 3)

I am much more susceptible to any skin infections on Sprycel. I did have some blurry vision, but it was dry eye. I'm not sure if the dry eye was caused by the TKI directly, occurred

by Sherley (May 1)

Hi, it’s been awhile since I’ve posted. I was wondering if anyone has experienced blisters and severe itching between toes. I’ve had this going on
Category: Treating CML

Replies: 2

Last updated: 4 May 2022
scuba on 25 March 2022

Category: Uncategorised

Replies: 14

Last updated: 4 May 2022

Treatment Free Remission (TFR) update:
by kali (May 4)

So happy for you Scuba! The information you share is so valuable and helpful. Thank you and best wishes for continued TFR.

by Sherley (May 1)

This is really great news!!! Congratulations on your TFR.

by MJP (Apr 25)

Congratulations!

by onekayaker (Apr 21)

Awesome Suba.....you are an inspiration to us all and such a big positive force that gives strength to those in need.
Your knowledge helped me many times and many others.

Thank you
Category: Uncategorised

Replies: 14

Last updated: 4 May 2022
SageH on 2 May 2022

Category: Drug-drug interactions

Replies: 4

Last updated: 3 May 2022

Sprycel Dose under 50 mg?
by mamodei (May 3)

I take 20 mg of Sprycel. I had to lobby hard for a dose reduction. I've been on 20 for 2 years now. I've continued to make downward progress on my BCR/ABL, though progress

by scuba (May 2)

My doctor prescribed 20 mg in response to my severe myelosuppression which occurred at a higher starting dose. He is an expert in the field and one of the top researchers in the world who helped

by Felix (May 2)

Hi Sage ,My Doc was completely against reducing my dose to 20 mg ,I just insisted ,it's your body and if this decreases your side effects and makes your life better then just tell your doctor

by David Fitz (May 2)

I take 20mg daily.
I don’t know of any studies going below 50mg, but studies aren’t the be all and end all. There are lots of stop-studies, so it stands to reason a small dose is going
Category: Drug-drug interactions

Replies: 4

Last updated: 3 May 2022
Thomaskk on 1 May 2022

Category: Side effects

Replies: 0

Last updated: 1 May 2022

Microscopic Hematuria
by Thomaskk (May 1)

Hi

On Gleevec for 8 years.
Last week Urine analysis detected 3-5 RBC in the sample. No signs of UTI. (Bacteria)
I have been experiencing excessive thirst, burning
Category: Side effects

Replies: 0

Last updated: 1 May 2022
Jmbnccyn on 26 April 2022

Category: Uncategorised

Replies: 2

Last updated: 30 April 2022

increment, imatinib, 18 months ¿
by scuba (Apr 30)

https://www.thermofisher.com/us/en/home/life-science/pcr/real-time-pcr/r...

Two important parameters that describe the quality of quantitative data are accuracy and precision.

by ColoradoGuy (Apr 29)

It may look like an uptick but the difference in the two is very insignificant at .001. That is essentially no difference and you are maintaining a good MMR. Congrats.

by Jmbnccyn (Apr 26)

Hello, a year and a half after being diagnosed, my figure at 12 months 0.1 at 15 months 0.009 and now at 18 months 0.01 all this with 400 mg of imatinib and being 23 yo, I know it's not alarming
Category: Uncategorised

Replies: 2

Last updated: 30 April 2022
David Fitz on 30 April 2022

Category: Uncategorised

Replies: 0

Last updated: 30 April 2022

An investigation of the use of app technology to support clinical management of patients with chronic myeloid leukaemia (CML)
by David Fitz (Apr 30)

Back in 2019, lots of group members very kindly participated in a project looking at the potential use of apps to support patients with CML.
As you may have seen already, the findings of the
Category: Uncategorised

Replies: 0

Last updated: 30 April 2022
Russell girl on 24 April 2022

Category: Side effects

Replies: 4

Last updated: 28 April 2022

Side effect s
by Russell girl (Apr 28)

Hi . Oh wow well done . Glad everything is going well with you . Thanks very much I will get some magnesium and try it . Thanks again take care hopefully things will continue well with you .

by EvaH (Apr 27)

Oh i think we've all had the fraud feeling at some point! After i was admitted to hospital and on chemo pills ,I kept thinking "why am i hear with all these sick people?"
Weird cramps are pretty

by Russell girl (Apr 26)

Hi Thankyou for replying .yeah I’m ok , still nauseas and been getting cramp which I have never had before ..but ok I’m thinking that’s it’s not a big deal and life will

by EvaH (Apr 26)

Hi there
Welcome to the family!
Three days in is very early, many blood parameters may take time to stabilise so don't count anything as normal or abnormal yet.
How are things now?
Eva
Category: Side effects

Replies: 4

Last updated: 28 April 2022
Lisalater35 on 26 April 2022

Category: Uncategorised

Replies: 3

Last updated: 27 April 2022

My BCR went up is this normal?
by Lisalater35 (Apr 27)

Scuba,
also my Vit D level was low it was 25.8. I started taking D with K…

by Lisalater35 (Apr 27)

Hello,
5/18/21 0.655
10/07/21 0.367
01/04/22 0.185
04/19/22 0.892
i was diagnosed in November 2020 I am on 400 Imatinib.

by scuba (Apr 27)

Lisa,
When were you diagnosed and what were your last 3 PCR's? What TKI drug and dose do you take? Do you have any blast cells listed on your CBC report (blood counts).
A 0.2 to 0.9 rise

by Lisalater35 (Apr 26)

3 months ago it was 0.185 now it’s 0.892 what does this mean? Feeling the anxiety now:(
Category: Uncategorised

Replies: 3

Last updated: 27 April 2022
Jmbnccyn on 7 April 2022

Category: Uncategorised

Replies: 3

Last updated: 26 April 2022

very high eosinophils, permanent skin redness and doubts
by scuba (Apr 26)

"by the way, the CRP has risen from 0.009 to 0.01, from month 15 to month 18"
The difference between 0.009 and 0.01 is 0.001. PCR precision is one log (power of 10). And that is when PCR

by Jmbnccyn (Apr 26)

Hello, thanks for the answer, I am still with imatinib today, it seems that the skin has improved slightly due to the temperature balance, when I have more redness it is with temperature contrasts

by scuba (Apr 7)

It seems you may be having a significant allergic reaction to imatinib

https://pubmed.ncbi.nlm.nih.gov/26679005/

Eosinophils increasing is a reaction.
Given that you responded well to imatinib,

by Jmbnccyn (Apr 7)

Good afternoon, background, I was diagnosed 1 year and 6 months ago, with 400 mg of imatinib to date, I am 23 years old, the first year of treatment was slow, but after 1 year and 3 months it picked
Category: Uncategorised

Replies: 3

Last updated: 26 April 2022
Tanya Cuffe on 3 April 2022

Category: Uncategorised

Replies: 1

Last updated: 26 April 2022

Worsening insomnia. Is 5HTP helpful and safe?
by EvaH (Apr 26)

5htp is certainly safe, i don't know if it helps insomnia but it can't hurt
Keep up with the magnesium even if you feel its not working
Are there lifestyle changes you can make?
Also many sleep

by Tanya Cuffe (Apr 3)

Hi friends! I am not sleeping and it’s getting worse. Seen doctors/naturopaths. Used melatonin and magnesium successfully for 6months now stopped working. Want to try 5HTP. Has anyone used
Category: Uncategorised

Replies: 1

Last updated: 26 April 2022
Justine on 14 April 2022

Category: Side effects

Replies: 2

Last updated: 24 April 2022

Pain and bruising
by Justine (Apr 24)

Thank you Sandy. I have been increasing Vitamin C foods and will see clinician next week. Thank you so much for sharing your experience and knowledge with this community. It is nice to have a place

by sandy craine (Apr 19)

Hi Justine,
you say you have anaemia which might be a clue to the increase in bruising you are suffering. If you increase your daily intake of Vit C this might support your iron levels. It is not

by Justine (Apr 14)

Hi, for a long time I’ve been doing really well but in recent weeks I have been getting bad bruises on back and hand, and feeling quite a bit of pain in my lower back and down my legs (like
Category: Side effects

Replies: 2

Last updated: 24 April 2022
Reilly9108 on 21 April 2022

Category: Children & young people

Replies: 2

Last updated: 22 April 2022

P210
by Reilly9108 (Apr 22)

Thank you Kirk for your response

by RC Kirk (Apr 22)

Hello Reilly,
If you have typical CML then the P210 type of BCR/ABL1 is the dominant form that's usually detected when testing for response to TKI therapy.
Your result of .062% is showing that

by Reilly9108 (Apr 21)

After 1 year p210 .062 was negative all along
p190 negative

why would p210 change?
I did switch labs not sure that has anything to do with it
Category: Children & young people

Replies: 2

Last updated: 22 April 2022
Yash on 21 February 2022

Category: Uncategorised

Replies: 10

Last updated: 22 April 2022

Please reply cml and gynecomastia surgery
by Yash (Apr 22)

gynecomastia surgery and cml (imtinib)....any problems after sergery???
PLEASE reply.........

by Yash (Mar 11)

????????????

by Yash (Mar 7)

No one.. Any experience?
If yes please... Share your experiences...

by Yash (Mar 2)

Any experience any surgery? (cml)
PLEASE reply
Category: Uncategorised

Replies: 10

Last updated: 22 April 2022
Kopex123 on 31 March 2022

Category: Uncategorised

Replies: 7

Last updated: 19 April 2022

Why I’m I crying
by israel (Apr 19)

Hey,
Few things can be more difficult than realizing that you don't know the right step to take, like this gentleman here who faced the reality of not knowing the "double step":
https

by Kopex123 (Apr 18)

Many thanks for your encouraging and kind words, hopefully with the counselling I can move on with a positive attitude. I’ve been on a Zoom support group which really helped but the emotions

by EvaH (Apr 14)

I had a relatively easy time (mentally) with CML initally when i was diagnosed 6 years ago.
I guess my straight line recovery to MMR helped with that and my attitude was that it was a hiccup i

by kat73 (Apr 12)

Dean - I second everything said here so far. I want to add to it. First, yes indeed, seek mental/emotional help in the form of therapy. It will help you, undoubtedly. There
Category: Uncategorised

Replies: 7

Last updated: 19 April 2022
Nicolem2022 on 10 April 2022

Category: Treating CML

Replies: 5

Last updated: 16 April 2022

Starting nilotinib - advice please
by Nicolem2022 (Apr 16)

Thanks Becca. I’m also starting on 300mg dose so I’ll bear in mind it might be much worse to begin with. I’ve got quite a lot of questions for the nurse next week relating to what

by cmhall604 (Apr 16)

Hi,
Just wanted to add that your blood panel might be out of whack at the beginning but should get back to normal levels over time. My wife had elevated liver enzymes (ALT and AST) and

by rebeccacrosby (Apr 15)

I was diagnosed in October and started Nilotinib in November. It was quite painful for a week as it killed the cells so quickly. I had horrible bone pain, particularly in my shins. Good news is my

by Nicolem2022 (Apr 15)

Thanks Justine
Category: Treating CML

Replies: 5

Last updated: 16 April 2022
cmhall604 on 11 April 2022

Category: Blood tests

Replies: 2

Last updated: 16 April 2022

Immature granulocytes in peripheral blood
by cmhall604 (Apr 16)

Hi Sandy,
Thanks very much for your reply. Got the results back yesterday and she's back to PCRU! I guess a little bit is nothing to worry about.
Cheers,
Chris

by sandy craine (Apr 13)

Hi Chris,
From what I understand, I don't think you need to be concerned. The appearance of myelocytes (1%) in your wife's peripheral blood is is probably due to an infection.
"

by cmhall604 (Apr 11)

Hello, I haven't posted in quite a while but my wife just had another checkup so I'm back with another question. She has been doing well over the past two years since diagnosis, reaching
Category: Blood tests

Replies: 2

Last updated: 16 April 2022
cousineg2 on 15 April 2022

Category: Clinical trials

Replies: 0

Last updated: 15 April 2022

Combination of Selenium with TKIs
by scuba (Apr 15)

I have taken selenium with dasatinib for several years (200 mcg). I no longer take dasatinib, but I continue to take selenium.
Category: Clinical trials

Replies: 0

Last updated: 15 April 2022
cousineg2 on 15 April 2022

Category: Uncategorised

Replies: -1

Last updated: 15 April 2022

How I met Zavie Miller...

Category: Uncategorised

Replies: -1

Last updated: 15 April 2022
MartinZA on 14 September 2018

Category: Treating CML

Replies: 11

Last updated: 15 April 2022

Update on moving "backwards" from dasatinib to imatinib
by MartinZA (Apr 15)

Hi abrahamlg
Thank you for your post! Sorry that I'm only replying to your questions now, but I haven't checked the forum in a while due to busy work deadlines.
First, I

by abrahamlg (Mar 29)

Hi MartinZA, Very sorry to bring back to life an old post. Nevertheless, the reason is because I switched backwards from dasatinib to imatinib 1 month ago.
I was researching info of doing this and I

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive

by Rosiem (Sep 16)

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive
Category: Treating CML

Replies: 11

Last updated: 15 April 2022