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CdnCML on 16 February 2021

Category: Side effects

Replies: 18

Last updated: 20 November 2022

embarrassing q for the lads
by whitebloodcell_Toronto (Nov 20)

Thanks so much for that info … good thing I found this forum …
As for my response (Dasatinib 100mg)…
After the first 3 months … I was told my target log reduction

by RC Kirk (Nov 14)

Some doctors believe 50mg/day of dasatinib is a better starting dose than 100mg/day because most patients still have a good reduction of Bcr/Abl1 /the lower dose with fewer or less severe side

by whitebloodcell_Toronto (Nov 14)

Yes, I did think about it. I’m just slightly worried since I am slightly falling behind on the bcr abl log reduction at the 6 month mark already.
by pill splitter, did you mean literally mean

by RC Kirk (Nov 10)

If your doctor won't consider changing your prescription, maybe you should consider changing your doctor. Or at least getting a second opinion.
Maybe a pill splitter would solve your
Category: Side effects

Replies: 18

Last updated: 20 November 2022
alison on 6 August 2018

Category: Treating CML

Replies: 18

Last updated: 19 November 2022

May switch to Bosulif -- Advice please
by Myriam1206 (Nov 19)

Hello!
Where can I find this bosutinib diet please?
thank you.

by alison (Apr 2)

@Steff, thanks so much for all that info. Good to hear you are doing well on 300. It seems that most of the really bad side effects are at 400 or 500 dosages.

by alison (Apr 2)

@chigi, how about any side effects? and are you still on 300 mg? thanks.

by chigi (Feb 23)

Hi Alison - sorry for delayed response. I started with 100mg, then 200mg after 3 days, then 300 mg after 3 days.
i take it at night after dinner. Hope this helps
Category: Treating CML

Replies: 18

Last updated: 19 November 2022
FirefighterCML on 18 November 2022

Category: Side effects

Replies: 0

Last updated: 18 November 2022

Stomach/esophageal pain
by FirefighterCML (Nov 18)

I am on 50mg Sprycel for almost 2 years without much incident and am MMR 4. Recently I have started to have significant side effects. Particularly stomach pain and esophageal spasms. Can
Category: Side effects

Replies: 0

Last updated: 18 November 2022
Rocky Mountain Gal on 4 November 2022

Category: Uncategorised

Replies: 4

Last updated: 18 November 2022

Switching Doctors
by vlacer (Nov 18)

It is great news that you were able to switch your Doctor.

by Rocky Mountain Gal (Nov 18)

Switch complete! Met with member of my new team today and I must say I am impressed! Nurse Practitioner who was not afraid to shake my hand when we met. Also, first provider to

by No_Fun_2022 (Nov 7)

Hello Mtn Gal,
Considering everything that has been going on with your Dr's I'm so glad your switching.
You have the right as a patient to seek out care from whomever you want. You don't

by whitebloodcell_Toronto (Nov 5)

I’m not sure about the process of switching doctors in the states . But here in Canada, it’s not that straight forward either. If I have to change my hematologist/oncologist, I would
Category: Uncategorised

Replies: 4

Last updated: 18 November 2022
alexmcpee on 1 November 2022

Category: Children & young people

Replies: 19

Last updated: 18 November 2022

Latest results
by kat73 (Nov 18)

Go Turtles! I remembered when you were a newbie. A writer was born!

by An (Nov 13)

Great news Alex,onwards and downwards

by Sunny (Nov 5)

Thank you Alex, I am fine. Regarding TFR, it seems to be like the holy grail we all aspire to. Great if you can achieve it and stay there. Now I have a confession to make: my consultant suggested

by alexmcpee (Nov 4)

Thanks Dawn. I am very grateful ☺️
Category: Children & young people

Replies: 19

Last updated: 18 November 2022
Lucky Utubor on 16 November 2022

Category: Uncategorised

Replies: 6

Last updated: 17 November 2022

My high platelet
by Lucky Utubor (Nov 17)

I was feeling fine when I was on TKI

by Lucky Utubor (Nov 17)

Scary 😧

by ColoradoGuy (Nov 17)

Were you in MMR and generally feeling well for the time you were on TKI? I found this article which shows successful treatment of both CML and the mutations you mention, although they appear

by Lucky Utubor (Nov 17)

I did a JAK2 V617F Mutation.
I have been on Imatinib for 8 years now and yes I have been on Hydroxyurea for 10 months though I had to stop in between those months when my wbc was
Category: Uncategorised

Replies: 6

Last updated: 17 November 2022
vlacer on 4 November 2022

Category: Treating CML

Replies: 9

Last updated: 16 November 2022

Should I change the medication or change my Hematologist?
by Sunny (Nov 16)

vlacer, what an excellent result, and what a super decision you made to switch doctors!
Your new doctor seems to know what he is doing. Your previous doctor's decision to up the dose to 800mg

by vlacer (Nov 16)

I had an appointment with the new Doctor and he is a lot better. He said that increasing the dose from 400 mg to 800mg is a bad idea, the medication is working based on the below results
July

by vlacer (Nov 7)

You need to check your insurance for a different Hematologist that is in the network and make an appointment. In my case, I changed to a different Hospital, the same Hospital will not give me an

by An (Nov 5)

You can find other doctors,just check with their office and insurance provider to make sure they are covered .Where do you live ?Having a doctor you trust is very important.
Category: Treating CML

Replies: 9

Last updated: 16 November 2022
scuba on 16 November 2022

Category: Uncategorised

Replies: 0

Last updated: 16 November 2022

Covid & Vitamin D - results reported by a reputable journal
by scuba (Nov 16)

https://www.news-medical.net/news/20221115/Vitamin-D-can-reduce-severity...
https://www.nature.com/articles/s41598-022-24053-4 (reference paper)

Overall, the study findings
Category: Uncategorised

Replies: 0

Last updated: 16 November 2022
Polineczka on 13 November 2022

Category: Uncategorised

Replies: 4

Last updated: 16 November 2022

Hormonal contraception
by sandy craine (Nov 16)

Hi, if that is what your doctor advised I agree that you should seek out another doctor - one who is more expert in treating CML. I mistook your doctors advice for Evie's (doctors) advice. Good

by Polineczka (Nov 15)

Thank you for your response. I come from Poland and unfortunately my doctor said that only mechanical protection is possible and asks me not to use hormones. I think I need to change doctor.

by sandy craine (Nov 15)

There is no evidence that 'hormonal contraception' (contraceptive pill) will have any effect on your TKI therapy. Have confidence in your doctor's advice.
Sandy

by Evie (Nov 13)

Hi I am on Imatinib since April this year and was advised I could continue taking my combined contraceptive pill. Haven’t had any issues with taking both.
Category: Uncategorised

Replies: 4

Last updated: 16 November 2022
cct121 on 20 October 2022

Category: Blood tests

Replies: 3

Last updated: 15 November 2022

BCR-ABL lab results after recovering from pneumonia
by cct121 (Nov 15)

Update about my results:
BCR-ABL was not detected at a detection limit of 0.00017%(IS)
Looking through the forum, ‘not detected’ results seem to weird people out a bit.
Does anyone know

by cct121 (Nov 3)

That's a relief to hear. I have my blood test next week with my follow up the week after, so if I can maintain 50mg/day, I think that'd be a great thing. Granted I was lucky enough to not

by alexmcpee (Oct 31)

Anything under MMR4 I am told is just noise of the test and a lot of bouncing can occur because of the lower level disease and the sensitivity of the test. They’re all effectively the same

by cct121 (Oct 20)

Hi guys,
Just wanted peoples experiences & opinions on whether my most recent lab results should be a cause for concern.
Quick backstory: I went abroad back in early August, and then suddenly
Category: Blood tests

Replies: 3

Last updated: 15 November 2022
Damian Gabilondo on 8 November 2022

Category: Uncategorised

Replies: 4

Last updated: 14 November 2022

TFR
by MartinZA (Nov 14)

Hola Damian
Good luck for your TFR! I'm trying it myself and it is amazing how good it feels to be off the TKIs for a while, although I don't think this will be permanent.
Hope it

by An (Nov 13)

Hi Damian,
All the best for your TFR attempt.

by Sav_5 (Nov 12)

Hi Damian,
I wish you success in maintaining TFR and relaxing from the routine of schedule and fasting! The most tiring with Tasigna is "chasing" the time..
Savvas

by sandy craine (Nov 9)

Hi Damian, wishing you every success in maintaining TFR.
Sandy
Category: Uncategorised

Replies: 4

Last updated: 14 November 2022
scuba on 10 August 2020

Category: Uncategorised

Replies: 16

Last updated: 13 November 2022

Leukemia immuno-therapy "cure" progress update
by laminetrack1 (Nov 13)

Unfortunately, cancer still occupies a special position in today's world. This is because although they have learned how to treat this disease, there is still no guarantee that there will not be

by scuba (Jun 1)

https://ashpublications.org/blood/article/138/Supplement%201/1766/480715

Trial ongoing

by notificationva (Jun 1)

any updates on this topic?
for me it is an actual thread

by argearge (Aug 26)

I received the following mail from the researchers last saturday.
"Dear friends and supporters,
It has now been 2 months since we opened the online pot “CanCell Therapeutics: New CART-
Category: Uncategorised

Replies: 16

Last updated: 13 November 2022
Tedro on 7 November 2022

Category: Side effects

Replies: 8

Last updated: 11 November 2022

going to see Dr Jorge E Cortes
by hannibellemo (Nov 11)

Thanks, Kirk!

by Tedro (Nov 10)

Thank you, Kirk.
I see all you did. Much thanks.

Edit: Wow.
Again, thank you all very much.
I will try to report back when I have something to report. My appointment is on the 17th. and

by Tedro (Nov 10)

Thank you.
When I click the link it (page) says:
No Results for “logisnews”
:( ?

by Sunny (Nov 10)

Kirk, I also could not read this article; thank you so much for your cut'n'paste job
pigeon
Category: Side effects

Replies: 8

Last updated: 11 November 2022
jilu on 13 November 2018

Category: Side effects

Replies: 3

Last updated: 9 November 2022

HIGH thyroid TSH levels after being on sprycel for 2 years
by teddyb (Nov 9)

Hello. Hope you all are doing well.
I have been on 50mg sprycel daily for the last two years, and lately been having some issues like chills, dizziness, tinnitus and muscle/join pain. Dizziness and

by MJP (Nov 13)

I second the idea of seeing an endocrinologist. My first oncologist saw no reason to check TSH for six month. I asked my current onc to test and my TSH has increased to over 10

by scuba (Nov 13)

Dasatinib impact on thyroid function is well known
https://www.ncbi.nlm.nih.gov/pubmed/20929406
https://www.hindawi.com/journals/bmri/2013/725410/
I developed full blown thyroiditis a few years ago

by jilu (Nov 13)

Dear mates,
i have been on dasatanib 100mg daily for 2 years now. i started gaining weight from past one year . every 3 months i am doing thyroid test .
though T3 , T4 level are under normal range
Category: Side effects

Replies: 3

Last updated: 9 November 2022
snowman 35 on 9 October 2021

Category: Drug-food interactions

Replies: 4

Last updated: 7 November 2022

Tattoo while taking tkis?
by LucianaMcclain (Nov 7)

Thanks a lot for sharing your thoughts, guys. Now I'm sure I'm ready for my first Custom Persian Tattoo's. Tbh, I've always dreamed of it. When I was a kid, I saw my older brother

by Christine R (Oct 10)

I did ask this question at one point many years ago and my consultant told me there was no problem. I was never brave enough to carry that through. However after surgery for beast cancer

by snowman 35 (Oct 9)

Hi David!

I am 4.5 years undetected and my platelets are in normal range!

Thank a lot for your response!

by David Fitz (Oct 9)

With the possible temporary exception of someone newly diagnosed with very low platelets, there is no problem at all.
David.
Category: Drug-food interactions

Replies: 4

Last updated: 7 November 2022
MadCow101 on 4 November 2022

Category: Uncategorised

Replies: 5

Last updated: 6 November 2022

Just diagnosed with CML.
by scuba (Nov 6)

Your doctor can easily send a sample of your peripheral blood for a leukemia test. High white cell count on its own, especially when just above the normal range is not indicative of anything except

by ColoradoGuy (Nov 6)

You can't be diagnosed by high white blood cell count. As far as high this is just above the normal range. What other tests were done?

by MadCow101 (Nov 5)

No marron yet. I go to MD Anderson here in Houston next week.

by MadCow101 (Nov 5)

No marron yet. I go to MD Anderson here in Houston next week.
Category: Uncategorised

Replies: 5

Last updated: 6 November 2022
snowman 35 on 8 August 2022

Category: Blood tests

Replies: 15

Last updated: 5 November 2022

Tfr has begun
by Sunny (Nov 5)

Good idea to reduce. With dasatinib less seems to be more, and you also lower the threat of having pleural effusion, so go for it, and good luck.
pigeon

by snowman 35 (Nov 5)

Hi every one!After tfr fail (bcr abl 0.013)I returned to sprycel 70mg and one month later I am back to undetected!So my next step is to reduce my dose to 50mg....

by snowman 35 (Sep 20)

Hi all!

I just had a phonecall with my doc.I wanted to tell him if we could reduce dose 70mg to 50mg.

He didn't remember that the last 9 months before trying tfr I was taking 70mg and

by snowman 35 (Sep 18)

This exactly what I am planning to do Scuba!It is going to be difficult cause my doc is not a fun of reducing the dose.....

The only concern I have right now is if the pcr after one month in
Category: Blood tests

Replies: 15

Last updated: 5 November 2022
SS86 on 31 October 2022

Category: Side effects

Replies: 8

Last updated: 5 November 2022

Water Retention in Lungs
by SS86 (Nov 5)

Thank you so much, Scuba.

by scuba (Nov 4)

https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(16)30568-7/fulltext
https://ashpublications.org/blood/article/138/Supplement%201/3607/479750...
https://ashpublications.org/

by SS86 (Nov 4)

Scuba, Thanks for your reply. Your replies are always useful to all of us.
I have an appointment with the doctor but I am not sure if he will be convinced to a 20 mg dose on an alternate day.

by SS86 (Nov 4)

Thank you for the reply, Hannibellemo. I will try my best to convince the doc to 20 mg dose.
She was on 100 MG before ( for almost 8 months) before the skin rash hit her twice. The first time
Category: Side effects

Replies: 8

Last updated: 5 November 2022
myraebora22 on 4 November 2022

Category: Blood tests

Replies: 1

Last updated: 4 November 2022

CML
by hannibellemo (Nov 4)

Hi, myraebora22. Knowing your country would help tremendously in determining medication aid. 🙂 Imatinib does have a generic version now - something that might be helpful. Mark Cuban's Cost Plus

by myraebora22 (Nov 4)

Good day.
My husband is 50yrs old diagnosed CML Last January 2020.
His prescribed medicine and maintenance is Imatineb. It is very costly. I need help for his continuous medication .
Thank you.
Category: Blood tests

Replies: 1

Last updated: 4 November 2022
DawnD on 2 November 2022

Category: Uncategorised

Replies: 4

Last updated: 4 November 2022

My CML
by DawnD (Nov 4)

Thank you so much for the replies!

by hannibellemo (Nov 4)

Hi, Dawn, at our age (l'm 3 years older) I wouldn't have concerns about any cardiac function tests. I had EKGs every 3 months when I was on dasatinib and then nilotinib although now that I

by DawnD (Nov 3)

I have the PCR done every 4 months. Yes he is afraid I will relapse. Doesn’t make sense to me. I am gonna try the 20 mg just like you said for a year and see what happens. Do you think every 4

by RC Kirk (Nov 3)

With your undetected status, any of the options you listed seem reasonable.
You might try going down to 20mg/day for a year and if you're still undetected, go for TFR.
Is your hematologist
Category: Uncategorised

Replies: 4

Last updated: 4 November 2022