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Harriet on 27 February 2019

Category: Getting help

Replies: 24

Last updated: 5 September 2024

Tumeric/curcumin
by scuba (Sep 5)

Do a search on your local Amazon site or Holland & Barrett for "Curcumin C3 complex" and you should see several listings.

I am not familiar with some of the labels, so buyer beware. For

by Danmason11 (Sep 4)

Hi all
Came across this post while searching for which Turmeric is best to use. Does anyone know if this is available in the UK? Can only find it on US sites with extortionate shipping cost. Can’t

by scuba (Mar 12)

I buy the formulation - Curcumin C3 complex with bioperine - 1 gram caplets. It's the formulation used in clinical studies.
There are several manufacturers. Do an on-line search and usually you

by jriccoboni (Mar 11)

Hey Scuba what brand of tumeric/curcumin do you take? I think I am finally going to give it a try.
Category: Getting help

Replies: 24

Last updated: 5 September 2024
AlastairC on 6 October 2017

Category: Treating CML

Replies: 158

Last updated: 5 September 2024

Imatinib Dose Reduction Starts
by AlastairC (Sep 5)

Zoran at this stage I'm not planning another TFR attempt thanks.
I actually saw my consultant yesterday - first time for over 3 years as we have had a routine of him calling me with blood test

by 3oK@ (Aug 18)

Hi Alastair,
A couple of days ago I stumbled on the paper below about Imatinib not being able to reach CML cells in the central nervous system from where they tend to relapse following the

by AlastairC (Aug 16)

Vikram I am not qualified or capable to assess these results. If you are concerned you should talk to your doctor who will hopefully have access to trends in data and can make a useful assessment

by Vikram (Aug 15)

CBC report

Hemoglobin: 16.2

Total RBC Count : 6.09

Total WBC Count : 14260 [range 4000-11000]

Platelet Count: 582000 [range 1,00,000-4,50,000]
Wbc and platelet?
Category: Treating CML

Replies: 158

Last updated: 5 September 2024
MartinZA on 30 August 2024

Category: Treating CML

Replies: 6

Last updated: 2 September 2024

2 years treatment free - update
by Ross Davies (Sep 2)

Thanks for your positive words Martin, they are really appreciated. I was given my official diagnosis on the 2nd of July, so I have just completed my first 60 days on Imatinib.

I was lucky as

by MartinZA (Sep 1)

Hi everyone and thanks for the replies!
Pojo, please don't apologise as I didn't take the slightest bit of offence because I know exactly what you meant. When the numbers started rising last year,

by JoeP (Aug 31)

Oops you’re right David of course, sorry about that Martin I meant no disrespect.

Please forgive me.

Martin your experience is extremely encouraging.

Looks like you’re out of the

by David Fitz (Aug 31)

Pojo, from Martin’s results table the highest he’s been during TFR is MR4 which is ten times lower than MMR.
David.
Category: Treating CML

Replies: 6

Last updated: 2 September 2024
Theresa Healy on 14 August 2024

Category: Treating CML

Replies: 20

Last updated: 2 September 2024

Bone pain on imatinib
by Theresa Healy (Sep 2)

Thank you, I'm next due a review with my consultant late October so I'm going to see if it settles and if not discuss it at that review with him.

by David Fitz (Sep 2)

Theresa - your symptoms seem really similar to me. No rhyme or reason to why a sudden onset of pain might occur. I could have had my legs up resting watching a movie, or could have been walking and

by Theresa Healy (Sep 1)

Thank you so much for responding. I was taking the medication you mention to prevent gout but I had a severe allergic reaction and had to stop taking it.
Thankfully it seems to have settled in

by MartinZA (Sep 1)

Hi Theresa
Sorry to hear that you're experiencing so much bone pain. I was on imatinib for 4 years and also had it regularly, although not severe enough to stop me from doing my daily activities,
Category: Treating CML

Replies: 20

Last updated: 2 September 2024
3oK@ on 19 August 2024

Category: Uncategorised

Replies: 5

Last updated: 1 September 2024

Chronic inflammation and CML
by Sorin (Sep 1)

https://www.researchgate.net/publication/337533661_The_Vitamin_E_Derivat...
https://researchmgt.monash.edu/ws/portalfiles/portal/403719225/382434187...
https://www.intechopen.com/chapters/75506

by 3oK@ (Aug 25)

I haven't heard of it. Why would you take it?

by Sorin (Aug 25)

What's your take on Delta tocotrienol together with Nilotinib?

by 3oK@ (Aug 20)

Hi Pojo, I think smoking and alcohol definitely contribute to chronic inflammation, but we don't feel it, we can only feel acute inflammation. Chronic inflammation is a mix of various issues,
Category: Uncategorised

Replies: 5

Last updated: 1 September 2024
RB on 28 August 2024

Category: Reproductive health

Replies: 1

Last updated: 29 August 2024

Planning pregnancy
by David Fitz (Aug 29)

Hi,
I would strongly recommend watching this video:
https://vimeo.com/778953440
Jane is probably the best in the world about knowing CML and fertility. You will hear people talk about interferon,

by RB (Aug 28)

Hello,

I was just wondering if anyone has any experience of a planned pregnancy with CML where levels have gone >1% or higher (even higher than 20%) during pregnancy and how this was
Category: Reproductive health

Replies: 1

Last updated: 29 August 2024
Amanda Lax on 23 August 2024

Category: Uncategorised

Replies: 4

Last updated: 25 August 2024

Flu Jab
by Amanda Lax (Aug 25)

Hi David, and again, thank you, i now understand so much better, and would think that my Doctor is reporting using log reductions, makes far more sense to this rather addled brain of mine,

by David Fitz (Aug 24)

There are a few different ways to report the numbers for CML, but it’s really just a difference of language rather than a different way of reporting it. The end result is the same.
Imagine one

by Amanda Lax (Aug 23)

Thanks David, understandably its all been a bit of a shock, i have a great Haematologist but i havent got a grip on the numbers game yet, people seem to be reporting them in a different format to

by David Fitz (Aug 23)

Absolutely fine to have the flu jab with CML, with the general caveat that your blood counts are in a normal range.
David.
Category: Uncategorised

Replies: 4

Last updated: 25 August 2024
Reilly9108 on 15 August 2024

Category: Uncategorised

Replies: 2

Last updated: 21 August 2024

Sprycel sluggish bowels
by JoeP (Aug 21)

I’m on Nilotinib but same thing.

I find eating fewer carbs helps.

More veggies and fruits.

Miralax gives me too much gas.

Also eating more soup in general is better.

by hannibellemo (Aug 21)

We really are all so different with these TKIs! I remember on the old LLS having hysterical posts on Gleevec sharts! I was never so regular as I was on Sprycel. However, during the years before CML

by Reilly9108 (Aug 15)

Anyone have a issue?
Category: Uncategorised

Replies: 2

Last updated: 21 August 2024
janlyn28 on 26 March 2018

Category: Blood tests

Replies: 8

Last updated: 16 August 2024

PCR up and down..is a transplant the way to go??
by hannibellemo (Aug 16)

Am I missing something on this thread? Janalyn28's original post was done in 2018 and yet we have a couple of current answers from 2024. I can't find anything new from Janalyn since 2018 on this

by scuba (Aug 13)

A bone marrow transplant is an absolute last resort. It is dangerous and can kill. The only reason to do a transplant is when everything else fails.

Your son is no where close to failing

by JohnFromChicago (Aug 13)

Hello janlyn28, my numbers have been in a similar state the last year or so. I am on Sprycel and considering switching to a third generation TKI (asciminib) did your sons numbers eventually go down

by MartinZA (Mar 28)

Hi again
I really believe that your son is in a good place with 0.26% and that all this talk of transplant is premature. Are they perhaps considering it because he is reasonably young and they
Category: Blood tests

Replies: 8

Last updated: 16 August 2024
Vikram on 20 November 2018

Category: Clinical trials

Replies: 164

Last updated: 16 August 2024

PLEASE REPLY
by Vikram (Aug 16)

Last 13 year undetectable....
Sorry 600 mg not Full dose.....
My dose after 2010...600 mg gleevec...
What about CBC....report? Wbc and platelets high.... related CML?[ Increase pcr 0.0077]
Last 13

by David Fitz (Aug 16)

Vikram,
A PCR of 0.007% is a great response. It could increase by 10 times and still be in MMR, which is our main milestone. But 600mg of imatinib is not “full dose”, that’s a high dose. Full dose

by Vikram (Aug 15)

My dose gleevec [imtanib] 600
Dose reduce 600 - 400- 000 - 400 -600 cycle
Stop cycle

400 dose Report undetactable march 2023
Dose reduce 400 to 200....
Six months...later
Current time pcr

by Vikram (Aug 15)

Hii David
Category: Clinical trials

Replies: 164

Last updated: 16 August 2024
DawnD on 17 July 2024

Category: About CML

Replies: 5

Last updated: 10 August 2024

Stopped sprycel
by hannibellemo (Aug 10)

Dawn, were you on a reduced or full dose of Sprycel when you stopped? Our experiences are all so different on these TKIs, I had to laugh when I read that you were no longer constipated. Whereas, I

by DawnD (Aug 9)

Hi , yes we have communicated on the LLS site. Good to hear from you again. Honestly I have felt worse off the Sprycel than on it. My fatigue level has also increased along with the pain. Go figure

by hannibellemo (Aug 9)

Dawn, I wonder if we have communicated on the LLS site. Your question is mine. I stopped nilotinib at the end of April. I developed musculoskeletal pain in early to mid-June (mostly hands and knees

by DawnD (Jul 17)

Thank you David. I am still hoping all will get better.:)
Category: About CML

Replies: 5

Last updated: 10 August 2024
Vikram on 9 August 2024

Category: Blood tests

Replies: 3

Last updated: 10 August 2024

platelets range and wbc high
by Vikram (Aug 10)

M BCR ABL 0.0077
Detected after 14 years.....
Last 13 year undetectable....
Reduce dose 200 mg is resone?
Please reply

by Vikram (Aug 10)

Imtanib 400 dose reduced.....
After reduce 200 mg gliveec....[after 3 month]
cbc report. Rbc wbc and platelets count high?
Please reply .......is dangerous?

by Vikram (Aug 9)

Hemoglobin: 16.2

Total RBC Count : 6.09

Total WBC Count : 14260

Platelet Count: 582000
Blood Indices
P.C.V: 49.2

M.C.V. : 80.8

M.C.H.: 26.7

M.C.H.C

by Vikram (Aug 9)

CBC REPORT
HEMOGLOBIN 16
Total RBC 6.09
Total WBC 14200
Platelet count 580000
Category: Blood tests

Replies: 3

Last updated: 10 August 2024
koralia.pappi on 23 July 2024

Category: Treating CML

Replies: 6

Last updated: 9 August 2024

Nilotinib resistence (?) after TFR attempt
by hannibellemo (Aug 9)

Hi, Koralia.pappi, I was glad to read your post. I attempted TFR after being on nilotinib 150mg qd for 2 years (3 years at CMR). After 3 months my PCR jumped to 0.02%, too high we thought for a

by koralia.pappi (Aug 8)

Hi all,
Here's the update:
jan'24 -> UPCR, Tfr start

feb'24 -> UPCR

mar'24 -> UPCR

29th apr -> 0.04%

25th may -> 0.13%, decide to restart tki

11th june

by koralia.pappi (Jul 27)

Hi all
So... once again, I need to say that this forum is a source of calm... you always help me regain my senses! Plus, there's collective knowledge in here that's available faster than any

by koralia.pappi (Jul 24)

Hi both,
Thank you very much for your encouraging responses!
We anyhow opted to do a series of tests (incl. Biopsy, mutation testing, pcr) so we will have all the data available to understand what'
Category: Treating CML

Replies: 6

Last updated: 9 August 2024
RN on 6 August 2024

Category: Blood tests

Replies: 6

Last updated: 7 August 2024

Upward tick in bcr abl. super concerned.
by RN (Aug 7)

Thank you Scuba. Appreciate your much needed advice. Makes me feel better. I may have to ask my doc to also contact Dr Cortes.

by scuba (Aug 7)

* https://ashpublications.org/blood/article/136/Supplement%201/3/471908/Th...

* https://ashpublications.org/blood/article/138/Supplement%201/3601/479738...
There is evidence lowering dasatinib

by RN (Aug 7)

Thank you Zoran. Appreciate your feedback. Gives me strength to hear from you and other folks.

by 3oK@ (Aug 7)

Okay, last week I had low counts but the doctor advised no change of dose - 80 mg Asciminib. I will do another CBC tomorrow.
Neutrophils 1.1

Platelets 60

WBC 2.4
My BCR dropped from 33
Category: Blood tests

Replies: 6

Last updated: 7 August 2024
Tedro on 8 July 2024

Category: Treating CML

Replies: 4

Last updated: 1 August 2024

doctors?
by scuba (Aug 1)

Dr. Cortes is one of the top Leukemia doctors in the world.

He was (and is) my doctor when he was at M.D. Anderson.

Dr. Cortes is the reason I was able (permitted) to try low dose

by Tedro (Jul 29)

Do you live in Georgia?
Are you VA (Veterans Administration)?
As I transition to more treatment, permit me to come clean.

Dr. Cortes is my doctor.
I felt that I personally wanted to ask the

by DerrickK1995 (Jul 29)

I see Dr. Cortes. He is amazing!!

by David Fitz (Jul 9)

He's a top-level CML specialist. One of the very best.
I was at a CML conference with him a few weeks ago. He is great at explaining complex CML topics to patients. You would be in very safe hands
Category: Treating CML

Replies: 4

Last updated: 1 August 2024
Lydia on 20 July 2024

Category: Side effects

Replies: 6

Last updated: 23 July 2024

Withdrawl Symptoms on half dose Imatinib
by Lydia (Jul 23)

Yes, Alistair, you're right! That's his next move. I will post an update when we eventually get it resolved.

by AlastairC (Jul 23)

Lydia I think the musculo skeletal folks are a good next port of call. I have had some issues with ankles over the years, which a podiatrist diagnosed to the fact that my Achilles tendons were not

by Lydia (Jul 22)

Thanks for your reply, Alistair. There's a lot in that thread of yours. We were fortunate enough to have a chat with Prof Clark at the time they were wanting volunteers for the Destiny trial.

by Lydia (Jul 22)

Thanks for your reply, David. Yes, it's pretty miserable. He's had years of never being far from a toilet on branded Glivec, finding an improvement on generics but now, when he feels so much better
Category: Side effects

Replies: 6

Last updated: 23 July 2024
MomOfCML on 14 July 2024

Category: Blood tests

Replies: 3

Last updated: 15 July 2024

Slow and steady
by MomOfCML (Jul 15)

His adherence to the drug is very good. He has missed one dose in the last year and takes it within a one hour window every day. He is living at home while a student, so Mom has been able to keep a

by David Fitz (Jul 15)

I would agree with your son. Below 0.1% is “optimal” but he is in a downward trajectory, even if slow, and generally anyone below 1% does pretty well. The 0.1% target is a scientific one, not one

by JoeP (Jul 14)

It took me over 5 years to reach MMR. My doc wanted me to switch early on but I resisted as I was afraid the other TKIs had worse side effects. There are papers out there that have studied the

by MomOfCML (Jul 14)

Two years ago, my now 21 year old son was diagnosed with CML. The learning curve has been steep, and two years in, I am still a worried Mom. His progress has been slow but steady. After initially
Category: Blood tests

Replies: 3

Last updated: 15 July 2024
nilotinib on 10 July 2024

Category: Uncategorised

Replies: 2

Last updated: 11 July 2024

Omeprazole
by JoeP (Jul 11)

I took omeprazole for a few months while on Imatinib. I was surprised at how it helped bring my number down real low. I had my lowest reading on Imatinib while on omeprazole. My number went back up

by David Fitz (Jul 10)

The NHS recommends you take it first thing in the morning (on once a day schedule). It can be taken on a full or empty stomach. It doesn’t interact with imatinib, so you can choose when to take your

by nilotinib (Jul 10)

Hello when is the best time to take Omeprazole when on Imatinib. I take my Imatinib with breakfast.
Cheers Keith
Category: Uncategorised

Replies: 2

Last updated: 11 July 2024
SeasonJ on 18 June 2024

Category: Blood tests

Replies: 9

Last updated: 8 July 2024

CML - My fluctuating BCR-ABL/ABL level
by Wstevenson (Jul 8)

Videos and resources look fantastic! Thank you for sharing.

by Wstevenson (Jul 8)

Thank you, David. I read all of the discussion, it made me feel a lot better.

:-) Winnie

by David Fitz (Jul 5)

Those videos are up now - see the post in the orange box at the top :)

by David Fitz (Jul 4)

Hi Winnie,
It’s always a worry when numbers go up, isn’t it? But you are still firmly in MMR.
The difference between 0.041% to 0.049% is statistically negligible, they are basically the same result
Category: Blood tests

Replies: 9

Last updated: 8 July 2024
David Fitz on 5 July 2024

Category: About CML

Replies: 0

Last updated: 5 July 2024

CML Horizons 2024 - videos and presentations now available
by David Fitz (Jul 5)

All the videos and presentations from CML Horizons 2024 are now available. It was a really good conference this year.
https://www.cmladvocates.net/cml-horizons-2024-hybrid-conference-vilnius...
Category: About CML

Replies: 0

Last updated: 5 July 2024