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scruffyhepburn on 24 August 2022

Category: Other conditions

Replies: 0

Last updated: 24 August 2022

CML and ABPA
by scruffyhepburn (Aug 24)

This is a long shot but I am wondering if there is anyone on here with CML and ABPA (allergic bronchopulmonary aspergillosis)?

I am on nilotinib.

Thank you!
Category: Other conditions

Replies: 0

Last updated: 24 August 2022
scuba on 2 August 2022

Category: Uncategorised

Replies: 3

Last updated: 23 August 2022

Best protection against Covid (and flu) since Covid is going to be with us for a long time.
by scuba (Aug 23)

Hi Justine,
I am familiar with the article you linked and the VITAL study. It is a flawed study in that they focused on "dose" taken and not blood plasma of vitamin D level circulating in

by Justine (Aug 23)

Hi Scuba, I have read your posts with interest and appreciation for many years now. I have an anecdote about Vitamin D to share.
I live in the US, for 20 years in the state of Montana, a

by No_Fun_2022 (Aug 2)

Vitamin D is great but by far without a doubt the best protection against severe disease and death from Covid is to be vaccinated...

by scuba (Aug 2)

Covid (and flu) is an infection of the respiratory system beginning in the mucous membranes of the nasal system.
Confined there, these virus' are not deadly in themselves. What makes respiratory
Category: Uncategorised

Replies: 3

Last updated: 23 August 2022
brandonromeril99 on 19 August 2022

Category: Drug-food interactions

Replies: 3

Last updated: 20 August 2022

Anyone know what anti inflammatory is safe to take with imatinib?
by JoeP (Aug 20)

I was on Imatinib for over 10 years. Probably over half of that time I had elevated inflammation usually in my lower back. While I usually just lived with it taking nothing on a regular basis I did

by Christine R (Aug 20)

I would also like to know the answer as i was told no ibuprofen. As i am now on asprin this is even more of a no no. I mentioned my gp had prescribed high strength ibuprofen gel to my

by Richard42 (Aug 20)

I have never been told ibuprofen was a no no on imatinib. Indeed I was told I could take it, and paracetamol (not an anti inflammatory of course) also ok - some have been told not to take that

by brandonromeril99 (Aug 19)

Always thought ibroprofen was a no no,
so wondering what ones are considered safe (over the counter) anti inflammatorys.
Category: Drug-food interactions

Replies: 3

Last updated: 20 August 2022
michaelnall1009 on 29 August 2019

Category: Side effects

Replies: 4

Last updated: 20 August 2022

memory problems and Tasigna
by reservedzz (Aug 20)

Thanks for the answers! I hope you are doing alright now. My doctor told me he was going to prescribe me this, and I needed to decide whether I wanted to start this treatment or not.
There is a

by ColoradoGuy (Aug 19)

I am on Tasigna and sometimes have brain fog. It is probably due to lack of sleep however. Prior to diagnosis one of the only symptoms I had was bad memory focus. Somebody could be

by michaelnall1009 (Aug 30)

Hi Alex - thanks for the reply. Yes, she has been in remission for quite some time and the guidelines - at least here in the US - now suggest discontinuation of TKI therapy after years of

by alexmcpee (Aug 30)

Blimey. I too am on Tasigna but only 16 months thus far. I have not read about anything like this and maybe in some extreme cases it might mess with things. The prob is that the drug hasn't been
Category: Side effects

Replies: 4

Last updated: 20 August 2022
Tedro on 16 August 2022

Category: Treating CML

Replies: 5

Last updated: 18 August 2022

levels of remission?
by Tedro (Aug 18)

Most excellent, Sandy. Thank you very much.

I willmost excellent, Sandy. Thank you very much.

I will post the information I found in a little bit. :)

by Tedro (Aug 18)

Since I posted I have found some very pertinent information that cleared a lot of this up for me. And your explanation is right along those lines, very good.
since I posted I have found some very

by sandy craine (Aug 18)

Tedro,
apart from Martin's excellent explanation regarding levels of remission, you may also find it helpful to download our PCR booklet which is on our home page - link here read pages 13

by MartinZA (Aug 18)

Hi Tedro
I'm no expert at this, but here's my attempt at a short answer to your question:
The levels of CML in one's body can be measured in terms of blood counts, bone marrow and then
Category: Treating CML

Replies: 5

Last updated: 18 August 2022
MomOfCML on 14 July 2022

Category: Blood tests

Replies: 3

Last updated: 18 August 2022

Parent of 19 year old with CML looking for input
by An (Aug 18)

Maybe if the pcr value decreases ask if dose reduction is possible,maybe that will solve the issue.

It must be hard for your son during teen years to deal with this especially when friends are

by MomOfCML (Aug 18)

Thank you so much for your response.
Since my last post, my son has had an ultrasound on his liver and pancreas, a few other blood tests and switched to Imatinib. The ultrasound came back clear. His

by ColoradoGuy (Jul 15)

It is just as you have said there can be increases in liver enzymes. When it has happened to me in the past we wait to the next test (3 months) to see if it is of concern. It has both

by MomOfCML (Jul 14)

Hello All,
Three months ago, my 19 year old son was diagnosed with CML in the chronic stage. Of all the sources of information I've found, this support group has provided me with the most
Category: Blood tests

Replies: 3

Last updated: 18 August 2022
Jacqueline Allmark on 14 May 2021

Category: Uncategorised

Replies: 2

Last updated: 18 August 2022

Absorption and difficulties in taking Imatinib
by leonedibben (Aug 18)

It would be better to consult a doctor about this issue. One of my friends had this surgery but didn’t take any particular medications.
You will have to follow strict food rules, and you

by esmariakrider (Aug 16)

Did you have the surgery? How do you feel now?

by Jacqueline Allmark (May 14)

I am having gastric bypass surgery next week does anyone have experience of this and CML My concern is absorption of Imatinib My consultant says it is absorbed in the bowel and should be okay .
Category: Uncategorised

Replies: 2

Last updated: 18 August 2022
PhilipDavid on 17 August 2022

Category: Getting help

Replies: 0

Last updated: 17 August 2022

Imatinib— Supply Issue
by PhilipDavid (Aug 17)

Dear all
I have been on imatinib some 7 years now My PCR 0.005 so all good .
A bit worried told by Hammersmith hospital pharmacy today — supply issues with TEVA ?
Category: Getting help

Replies: 0

Last updated: 17 August 2022
Mary Babbs on 12 August 2022

Category: Blood tests

Replies: 13

Last updated: 15 August 2022

Poor response to TKI'S ?
by Norma_55 (Aug 15)

Hi Sandy
I forgot to add I’d been doing a lot of heavy duty work on my garden From May to early July.

I started in a May but had to stop for a couple of weeks because

by Norma_55 (Aug 15)

Thank you for your reply, I’ll ask my GO for this test.

by Norma_55 (Aug 15)

Thank you for your reply, I’ll ask my GO for this test.

by Norma_55 (Aug 15)

Thank you
yes my hair has been affected, Should I start back on the high D3 dosage?
at the moment I’m having horrendous problems with low back discs and hip I’m seeing a
Category: Blood tests

Replies: 13

Last updated: 15 August 2022
Victoria Parker on 5 February 2021

Category: About CML

Replies: 21

Last updated: 15 August 2022

Do you ever feel ‘normal’ on TKIs
by Kamil (Aug 15)

If my understanding is correct- the doctor who prescribed you 500mg Dasatinib daily should lose their Dr’s license. No idea where he/she got the idea of such dosage, the maximum dosage

by Kamil (Aug 15)

If my understanding is correct- the doctor who prescribed you 500mg Dasatinib daily should lose their Dr’s license. No idea where he/she got the idea of such dosage, the maximum dosage that

by EvaH (Aug 13)

I'm not sure if this is helpful but after 5 years on tkis (imatanib in my case), I'm on trial tfr since Nov 2021. Since march 2022 i feel achy all the time, so it would seem that life without tkis

by DavidS (Aug 10)

Ive now been on it for 18th months at 500g a day.. to be honest I feel good on it, always take them with a meal, I find breakfast time good.. if you do get the runs then persist as it will
Category: About CML

Replies: 21

Last updated: 15 August 2022
Tedro on 5 August 2022

Category: Side effects

Replies: 12

Last updated: 12 August 2022

pleural effusion
by Tedro (Aug 12)

Then I must find new Drs.
I await VA grant or deny to new care, particularly Dr Cortes.
Thank you.

by scuba (Aug 12)

https://www.drugs.com/dosage/dasatinib.html
https://ashpublications.org/blood/article/134/Supplement_1/4150/424373/P...
https://www.clinical-lymphoma-myeloma-leukemia.com/article/S2152-2650(16)

by Tedro (Aug 11)

Where can I read the different levels of Dasatinib/CML responses?
Eg, I am in Complete Cytogenic Response; I am not in Complete Molecular Response.
Plus, I have CLL. So I’m trying to figure

by Tedro (Aug 10)

Yesterday Pulmonary Dr wants chest another xray, depending on what he sees (remaining pe) then he will look for his idea of possible Chylothorax.
ct scan, etc.
if and when he gives ok/all clear to
Category: Side effects

Replies: 12

Last updated: 12 August 2022
onekayaker on 2 September 2018

Category: Uncategorised

Replies: 18

Last updated: 10 August 2022

Please advise on Bosutinib 100mg Starting Sept 5 after failing on 100mg and 50mg Dasatinib
by sue. R (Aug 10)

Thanks, that good to hear. Yes it’s the shortness of breath is the reason.

by alison (Aug 10)

@sueR my husband has been on Bosulif 100 for two years with no side effects. He had lots of problems with shortness of breath on Sprycel 70 and then 50.
bosulif 100 is VERY low dose

by sue. R (Aug 10)

Awe, this is good news I start tomorrow on Bosutinib after being on Spyrcel for 5 years. Both is 100 mg.
only side effect from Spyrcel was tiredness but recently pleural effusion.

by sue. R (Aug 10)

Are you still on 100 mg, I am starting tomorrow having been on Spyrcel 100 for 5 years just start getting pleural effusion.
all blood work perfect, only side effect, I was a little
Category: Uncategorised

Replies: 18

Last updated: 10 August 2022
gdesposito on 5 August 2022

Category: Blood tests

Replies: 2

Last updated: 9 August 2022

Cause for concern?
by gdesposito (Aug 9)

Thank you. Yeah that’s the trick, trying find that sweet spot, keeping you in MMR or better while maintaining blood levels.

by ColoradoGuy (Aug 7)

Not much difference in these two results. I would consider regular bounce. It is great news that you are trending down overall. I would keep a close eye on blood levels and use the minimum mg TKI

by gdesposito (Aug 5)

First time posting

Diagnosed 9/2/2020
BCR-43.66% Started on Tasigna 600mg/day
stopped on 12/24/20 due to elevated liver enzymes, low WBC and low platelets(29,000)
started on
Category: Blood tests

Replies: 2

Last updated: 9 August 2022
Anonymous (not verified) on 30 December 2014

Category: Uncategorised

Replies: 5

Last updated: 8 August 2022

Bosutinib
by sue. R (Aug 8)

Thanks for sharing this, I was on Spyrcel for 5 years but due to pleural effusion I am changing to Bosutinib.
hope I don’t get thining hair as my has just grown back.

by Anonymous (Jan 1)

Happy New year to you Lusia. Thank you for replying I am feeling a little better about things. Some of your side effects have been part of my concerns..diarrhoea-nausea also the skin problems..I

by Anonymous (Jan 1)

Happy New Year. Thank you for replying. I am glad to read that you have not had many issues with this drug. I am feeling a little better about things. I would like to contact you directly and will

by karen (Dec 31)

Hello
I have been on Bosutinib for over a year and can honestly say it has been the best drug of all five. I have been lucky with the gastric issues (not suffered any) although at 300 I did have
Category: Uncategorised

Replies: 5

Last updated: 8 August 2022
Shekhar on 5 August 2022

Category: About CML

Replies: 5

Last updated: 8 August 2022

CML recovery stage and GOUT
by Vikram (Aug 8)

Congratulations for TFR
Best wishes.... For TFR
Thank you for reply

by Shekhar (Aug 8)

Thank You Vikram, by BCR details
Sep 8, 2015 0.0379%
Jul 1, 2016 0.0012%
Jan 5, 2018 0.0097%
Sep 28, 2018 0.0065%
July 7, 2019 0.0059%
Feb 10, 2021 0%
Dec 11,

by Shekhar (Aug 8)

Thank You, As per the doctors after stopping Gleevec. In some cases it increase the level of Uric acid in the body.

by Vikram (Aug 7)

Hii Shekhar
Before tfr your bcr ??
How many year undetactable??
Congratulations for TFR
Category: About CML

Replies: 5

Last updated: 8 August 2022
Rocky Mountain Gal on 23 July 2022

Category: Blood tests

Replies: 1

Last updated: 6 August 2022

Fasting and CBC draw
by JoeP (Aug 6)

I used to fast a lot. It seemed to help even before a blood draw. But not sure the results are definitive with fasting. For one thing I know when I did fast under imatinib it actually was not good

by Rocky Mountain Gal (Jul 23)

I am finishing a 3 day fast today. Not as bad as I thought! Question: Should I go in for my blood draw before or after I break my fast?
Category: Blood tests

Replies: 1

Last updated: 6 August 2022
Sd on 5 August 2022

Category: Side effects

Replies: 2

Last updated: 5 August 2022

altitude, imatinib and CML
by Sd (Aug 5)

Thanks for replying. The visit was good. Beautiful place indeed

by Rocky Mountain Gal (Aug 5)

Completely normal response to the change in altitude for anyone, with or without CML. I live at 5200' and am constantly telling friends who visit to give themselves time to adapt.

by Sd (Aug 5)

Does anyone have any information about the affects of altitude change? I was diagnosed 3 years ago. I am very well controlled on 200 mg of imatinib daily. A recent trip to Denver left me
Category: Side effects

Replies: 2

Last updated: 5 August 2022
Rocky Mountain Gal on 16 July 2022

Category: Getting help

Replies: 18

Last updated: 4 August 2022

I’m trying to not freak out
by Rocky Mountain Gal (Aug 4)

Thanks. I'm still going in for bi-monthly blood draws, so I'll see if my doc will add it. How long did it take for you to reach 1%?

by scuba (Aug 4)

In Colorado you can schedule a blood draw at any Quest diagnostics for a vitamin D test. Or you can visit your doctor and do the same.

by Rocky Mountain Gal (Aug 4)

Thanks for the encouraging words, Scuba. I am taking 125 mcg (5000IU) of vitamin D3K2 every day and walking my dog in shorts and a t-shirt for sun exposure every morning. How do I

by scuba (Aug 4)

At diagnosis I was at 155% PCR (> 100% is possible because of the way the test is calibrated to the abl gene). I was borderline blast crisis and had a bunch of other genetic abnormalities going
Category: Getting help

Replies: 18

Last updated: 4 August 2022
bdmemphis on 25 August 2016

Category: Treating CML

Replies: 18

Last updated: 2 August 2022

Optimal (or suboptimal) response timeline
by ColoradoGuy (Aug 2)

For those worried about BDMemphis and others in similar slow responses I can confirm that BD is doing well with his treatment as of July 2022. I sometimes worry when people drop off of the

by AlastairC (Mar 13)

Hi,

Speed of response is very variable; this forum has referred to tortoises and hares on many occasions. There are people who get to MMR in 3-6 months (hares), and some who take several

by Ontasigna (Mar 13)

Hi David/sandy,
Pulling back an old post for reference.
I am just trying to understand why the pcr does not hit optimal response for few.
Considering efficasy and potent nature of nilotnib. It

by Job Guerra (Mar 13)

BDmemphis can you provide any updates? I'm curious because I also have not seen 0.1. Had 0.111 from bmb at 16 months (no mutations) but actually went up at 18 months rather than dropping that
Category: Treating CML

Replies: 18

Last updated: 2 August 2022
Lisalater35 on 1 August 2022

Category: Children & young people

Replies: 3

Last updated: 1 August 2022

BCR results after a spike.
by Lisalater35 (Aug 1)

David,
Also I ask Dr if my counts could rise due to low vitamin D, he said no. I went on Vitamin D, and it went down. It’s a mystery that for sure.

by Lisalater35 (Aug 1)

David,
Right? I was not believing the higher one 3 months ago, because my bloodwork was all great for the first time. I asked the Dr if this could be a lab error, he said no much of that one. My

by David Fitz (Aug 1)

It’s never nice seeing that sort of jump, is it? No matter how many of us will advise you “don’t worry, a one-off result can just be a blip” it’s still scary!
So I

by Lisalater35 (Aug 1)

So, I just received my new BCR results today after a jump.
5/18/21 0.655
10/17/21 0.367
01/4/22 0.185
04/19/22 0.892
07/22/22 0.0032
Its been a roller coaster the last three months stressing if I
Category: Children & young people

Replies: 3

Last updated: 1 August 2022