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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
sandy craine on 12 October 2022

Category: About CML

Replies: 1

Last updated: 4 November 2022

24th John Goldman Conference on CML - Biological and clinical overview
by Rocky Mountain Gal (Nov 4)

I really appreciate you keeping us informed with these conferences! Was this conference recorded? Do you have a link to the recording?

by sandy craine (Oct 12)

Highlights of the 24th John Goldman Conference on CML - Biological and clinical overview
Join our two experts as they discuss key aspects of the scientific sessions, workshops, abstract
Category: About CML

Replies: 1

Last updated: 4 November 2022
Reilly9108 on 3 November 2022

Category: Uncategorised

Replies: 1

Last updated: 3 November 2022

CA125
by RC Kirk (Nov 3)

I don't know, but maybe this test is something like the PSA test, looking for levels of an antigen in the blood. My PSA numbers seem to go up and down. Sometimes they get a little

by Reilly9108 (Nov 3)

Anyone having this test taken experience numbers up and down?
For me it’s always up & down. Scans are done shows nothing. Maybe the test is so sensitive it elevates with the
Category: Uncategorised

Replies: 1

Last updated: 3 November 2022
cousineg2 on 2 November 2022

Category: About CML

Replies: -1

Last updated: 2 November 2022

Psychological Factors Affecting the Willingness to Accept a Possible Tyrosine Kinase Inhibitor Discontinuation i

Category: About CML

Replies: -1

Last updated: 2 November 2022
Rick B on 28 February 2019

Category: Uncategorised

Replies: 5

Last updated: 1 November 2022

CML/Imatinib and Rising PSA
by RC Kirk (Nov 1)

3.1 | Patient PSA levels and events
A CML patient with benign prostatic hyperplasia (BPH) and slightly
elevated PSA (4.60 ng/ml) received imatinib treatment for 7 years.
When he was 71

by RC Kirk (Nov 1)

Can Tyrosine Kinase Inhibitors for CML Affect PSA Titers Unrelated to Prostatic Disease?
By: Celeste L. Dixon
Posted: Monday, December 10, 2018
A chance astute observation led to work,

by Rick B (Mar 3)

Thanks for the responses.

by Bill Miller (Feb 28)

My dad was diagnosed with prostate cancer about 14 years ago. He had surgery and radiation and is now cancer free, but has a lot of side effects from the radiation. He was 61 at the time, I'm 48
Category: Uncategorised

Replies: 5

Last updated: 1 November 2022
Buzzm1 on 3 October 2022

Category: Uncategorised

Replies: 17

Last updated: 1 November 2022

Post your CML history and ask others to comment on it ... we all may learn something.
by Sunny (Nov 1)

Thank you Kathy, just as you said, we have to do what we feel is right for us, and we are all different. Like you, I feel that at this point in time it is not right for me to stop treatment.
My

by Kathyp (Nov 1)

Pigeon —-You have to do what’s right for you , it took me along time to reduce my dosage( glivec) but eventually I did, not completely I’m still in 200 mg .for my mental health I

by Gian P (Oct 26)

My oncologists in September 0.119 recommended to test again in October, 0.134 and i just got my results back, so I suspect a call tomorrow, i m not sure what she could say to do, but i am a bit

by Buzzm1 (Oct 26)

Gian, in that your CML level has increased rather substantially in September and October I wouldn't recommend that you reduce your dosage at this time. If your CML level continues to
Category: Uncategorised

Replies: 17

Last updated: 1 November 2022
Abs815 on 19 October 2022

Category: Organising your life

Replies: 6

Last updated: 31 October 2022

Rubbish care in UK
by Abs815 (Oct 31)

Yes exactly! I have zero problem with locum doctors especially when they are regular locums, but your experience sounds so similar to my husband's. We've had every single one of those issues you

by alexmcpee (Oct 31)

I can relate to this since my original cml expert retired and I’ve now had 3 doctors in 2 years. I do understand the NHS predicament but to be honest I’ve had a bit of a rubbish handling

by Abs815 (Oct 20)

Hi Peter, sorry to have caused offence. May I just clarify that I am incredibly grateful for the NHS and as an NHS healthcare professional myself I know first hand how valuable the care within the

by Abs815 (Oct 20)

Thank you, that's really helpful.
Category: Organising your life

Replies: 6

Last updated: 31 October 2022