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SageH on 22 January 2024

Category: About CML

Replies: 3

Last updated: 5 February 2024

Test to Predict TFR Success?
by Sunny (Feb 5)

Thank you Scuba, for taking the time to write this helpful explanatory reply.

You write from a position of knowledge, and you have the gift of being able to disentangle and simplify complex

by JoeP (Feb 5)

Scuba your explanation helps to understand the problem at hand. I actually read this article a few months back. I emailed Pagani’s team in Australia. I explained that I plan TFR in the future and

by scuba (Jan 22)

I went to the original paper published in "Blood" journal:

https://ashpublications.org/blood/article-abstract/142/25/2192/497613/Li...
The key observation is this statement: "The median BCR::

by SageH (Jan 22)

Did anybody else read this article? I stumbled across it, but found it a little confusing. It says, "A leukemia test can help identify patients who are strong candidates for lifelong treatment
Category: About CML

Replies: 3

Last updated: 5 February 2024
hgr on 28 June 2023

Category: Reproductive health

Replies: 4

Last updated: 4 February 2024

IVF
by healthyhabits (Feb 4)

Hi! Let’s absolutely connect. I am still in the same boat as you. I am trying to keep my spirits up by doing everything I can to prepare for all fertility options: connecting with a fertility center

by David Fitz (Dec 8)

Hey there -
Fertility and CML has come a long way in a few years. Are you trying to stop dasatinib as a potential mother or a father? There is a big difference, and not that many clinicians are up

by lloyd152 (Dec 8)

Hi. I'm in the UK, 36, and looking into IVF after a couple of failed attempts to come off Dasatinib for long enough to conceive. Have you managed to find out more? Perhaps we could connect - it

by healthyhabits (Jun 28)

Hi, I am 32 so in a similar situation. I live in the US but have been looking at all kinds of fertility programs that help with the cost of IVF, particularly with cancer patients. I also spoke with
Category: Reproductive health

Replies: 4

Last updated: 4 February 2024
scuba on 18 January 2024

Category: Uncategorised

Replies: 6

Last updated: 28 January 2024

Rocky Mountain Gal - in memory
by hannibellemo (Jan 28)

Thank you for sharing this sad news, Scuba. I'm reminded of a conversation I had with one of my doctors. I was feeling guilty because others in the waiting room looked much sicker than I did. I

by Mick E (Jan 26)

That’s really sad to read!
Condolences to all her family and friends! 😞

by MartinZA (Jan 25)

Thanks for sharing this tragic news, scuba - I'm devastated to hear about Jillian's passing. My sincere condolences to the family.

by alexmcpee (Jan 24)

That’s such sad news. Shocking to hear of this in this day and age of a CML diagnosis. A reminder never to take anything for granted and to live our best and most authentic versions of ourselves as
Category: Uncategorised

Replies: 6

Last updated: 28 January 2024
Justina on 23 January 2024

Category: Treating CML

Replies: 4

Last updated: 28 January 2024

Imatinib 800mg
by Buzzm1 (Jan 28)

Justina, did you do a retest at that time and have you tested again since the June 2023 test? Are you still currently taking Imatinib 400mg or have you already upped your Imatinib dosage to 800mg

by Justina (Jan 28)

Hi,
Indeed the BCR went down to zero. I have been on zero for over 2 plus years.
In March 2023 I did the test again it was 0℅, in June the results were 25%.

And my doctor, recommended to up

by Buzzm1 (Jan 24)

Justina, I found a previous post of yours from February, 2020 which stated you had a PCR reading of 0.006 in November, 2019. Please explain.

by David Fitz (Jan 24)

Not a good idea, generally. More so not a good idea when there are alternative drugs available.
Do you have an alternative to 400mg imatinib instead of upping the dose?
David.
Category: Treating CML

Replies: 4

Last updated: 28 January 2024
max1ml7 on 16 August 2023

Category: About CML

Replies: 9

Last updated: 26 January 2024

TFR didn't work
by Buzzm1 (Jan 26)

The primary reason I posted the previous article on the UK Destiny Trial was to highlight the very last line in the report, that being: "Studies of more ambitious de-escalation are warranted."
200mg

by Buzzm1 (Jan 25)

De-escalation of tyrosine kinase inhibitor dose in patients with chronic myeloid leukaemia with stable major molecular response (DESTINY): an interim analysis of a non-randomised, phase 2 trial

by AlastairC (Jan 21)

I followed the Destiny protocol of 1 year on 200mg with sustained MMR before starting a TFR attempt. After 17 months of TFR my BCR-ABL rose above 0.1% so I restarted on 400mg imatinib and regained

by max1ml7 (Jan 19)

Update - I switched to 400mg imatinib and it went back to undetectable after 2 more months (so 3 since resuming).

I will continue with 400mg for some more time and then consider going back to
Category: About CML

Replies: 9

Last updated: 26 January 2024
David Fitz on 12 October 2023

Category: Uncategorised

Replies: 23

Last updated: 25 January 2024

Sandy Craine: Obituary
by MartinZA (Jan 25)

David, thanks so much for sharing this news with the forum. Sandy was a hero in every sense of the word and I am so devastated to hear of her passing. This forum has been so helpful to so many of

by sb22 (Jan 25)

i am so sad to read that Sandy has passed away. i met Sandy at the first CML seminar ,such a wonderful person and fighter xx

by TJ.B (Jan 17)

I am so sorry to read this, this forum has been invaluable to me, well done to her (and you) for being a patient advocate, such a selfless thing to do for us all. May she rest in peace.

by kali (Jan 17)

Sending condolences to Sandy’s family and friends. Everything I have learned about her on this forum speaks to this special lady who cared about sharing her journey with all of us.
I have found this
Category: Uncategorised

Replies: 23

Last updated: 25 January 2024
argearge1 on 18 June 2023

Category: Side effects

Replies: 19

Last updated: 19 January 2024

anemia en leukopenia with imatinib
by argearge1 (Jan 19)

I do not have side effects, only muscle cramps in my feet.

by Buzzm1 (Jan 19)

argearge1, I have a very low opinion of that CML expert for unnecessarily putting a CML patient at risk to the side-effects of extremely high dosage TKIs in an effort to reach an unneeded MMR. With

by argearge1 (Jan 19)

I did a 2nd opinion at a CML expert, and he said that I should reach MMR. They want me to change to dasatinib 140 when I did not reach it with 600mg imatinib, but 3 months later I reached it with

by Buzzm1 (Jan 19)

argearge1, any CML reading of 1.0 (CCyR), or less, means there is no danger to the CML patient from the diseases. At that point taking a higher then necessary TKI dosage in an effort to reach MMR
Category: Side effects

Replies: 19

Last updated: 19 January 2024
StayStrong3916 on 15 January 2024

Category: Side effects

Replies: 0

Last updated: 15 January 2024

CYP3A and Myelosuppression
by StayStrong3916 (Jan 15)

Hello and I hope everyone is having a great start to 2024.
There has been much discussion here and elsewhere re CYP3A4 and its importance in metabolizing TKIs. However, I am finding it difficult to
Category: Side effects

Replies: 0

Last updated: 15 January 2024
kel1arthurs on 8 December 2023

Category: Side effects

Replies: 20

Last updated: 15 January 2024

Excessive bone pain imatinib
by kel1arthurs (Jan 15)

I will do thank you xx

by kel1arthurs (Jan 15)

Thank you John very helpful advice

by AlastairC (Jan 14)

Glad to hear you will be getting some expert help to sort out the beast treatement regime for you. Please let us know how it goes.

by johnw1001 (Jan 14)

Hi there ,

As you were dx about six months ago this is par for the course with imatinib to experience bone pain and pain in the rib cage;mine was quite severe and debilitating but gradually
Category: Side effects

Replies: 20

Last updated: 15 January 2024
Justine on 30 June 2018

Category: Blood tests

Replies: 14

Last updated: 12 January 2024

15 mo results still no MMR
by Maddie (Jan 12)

I remain now on 20. With Bcrabl. .002. 4.3.

by Maddie (Jan 6)

Thank you. Just wanted to let all know you can start at a lower dose. You can always go up and lower has less side effects

by Buzzm1 (Dec 30)

Maddie, thought I would bring your post from May 12, 2021 forward:
May. Undetectable
March. .0187. 3.72
feb. .029. 3.55
had surgery and stop drugs for week
Nov. .055. 4.26
sept. .0126

by Maddie (Dec 24)

My dr at Dana started me at 50 mg. Gleevic made Mr really sick

After 2 years down to 40. And now 20 mg. .002 and 4.7. Bcrabl tests

Hoping to get to every other day
Category: Blood tests

Replies: 14

Last updated: 12 January 2024
EvaH on 3 October 2017

Category: Other conditions

Replies: 8

Last updated: 9 January 2024

Looking for others with neovascular proliferation in eyes
by EvaH (Jan 9)

Hi all
OP here, i haven't been on the forum for a while as I've been in TFR for 2 years.
In my case it was neovasularisation due to very high platelets and wbc on diagnosis...it was leukostatis

by EvaH (Jan 9)

Hi all
OP here, i haven't been on the forum for a while as I've been in TFR for 2 years.
In my case it was neovasularisation due to very high platelets and wbc on diagnosis...it was leukostatis

by JoeP (Dec 10)

I was diagnosed through Roth spots on my retinas. I was told that the microscopic discharge from the leukemia is too big for the tiny capillaries on the retinas, the smallest in the body, causing

by RichB (Dec 7)

Hi all, bit of an update from me:
Had 3 sessions of the PRP lasering done on both eyes. Bleeding into the right eye was to the point that I couldn't see out of that one for the most part, however
Category: Other conditions

Replies: 8

Last updated: 9 January 2024
Dupont on 4 January 2024

Category: Treating CML

Replies: 6

Last updated: 7 January 2024

Low blood phosphates 🤔
by Dupont (Jan 7)

Thanks again, this is reassuring to hear :). From what i understand, my haematologist would like to get me below 0.1% in the quickest way possible, his target for his CML patients is the TFR. I know

by Dupont (Jan 7)

Thanks again, this is reassuring to hear :). From what i understand, my haematologist would like to get me below 0.1% in the quickest way possible, his target for his CML patients is the TFR. I know

by Dupont (Jan 7)

Thanks again, this is reassuring to hear :). From what i understand, my haematologist would like to get me below 0.1% in the quickest way possible, his target for his CML patients is the TFR. I know

by Buzzm1 (Jan 6)

Dupont, I wanted to mention that at any PCR reading of 1.0 (CCyR), or less, CML presents no danger to the CML patient which provides you with justification for a possible TKI dosage reduction..
Buzz
Category: Treating CML

Replies: 6

Last updated: 7 January 2024
susannahclay on 7 November 2023

Category: Uncategorised

Replies: 15

Last updated: 28 December 2023

Just diagnosed today...anxious, scared, but hopeful?
by David787 (Dec 28)

Hello Susanna,
Welcome to the club! Probably not one that you thought you would ever join! The best thing you have done is join this site which provides invaluable support, help and information

by cehcsucf (Dec 19)

One side effect that can happen is blood loss, Watch out for anemia and joint subluxation. If that occurs, get back to your oncologist right away.

by cehcsucf (Dec 19)

Hi,
I was diagnosed 11 years ago at 68 and am now 80. I started with a WBC of 211 and a BCR/ABL1 of 91%. I still hike and play tennis. You will have a great and full life. Worry cannot bring it on

by Nimbus2 (Dec 14)

Hello
Regarding side effects, on imatinib, I had pretty severe muscle cramps. The cramps disappeared the day that I changed to dasatinib. The other strange effect was feeling ridiculously cold. I
Category: Uncategorised

Replies: 15

Last updated: 28 December 2023
David Fitz on 20 December 2023

Category: Uncategorised

Replies: 0

Last updated: 20 December 2023

CML Horizons 2023 Hybrid Videos & Presentations NOW Available!
by David Fitz (Dec 20)

CML Horizons 2023 Hybrid Conference was held from 3rd till 5th November in Berlin, Germany. The conference was a highly anticipated and successful event that brought together a total of 131
Category: Uncategorised

Replies: 0

Last updated: 20 December 2023
cehcsucf on 18 December 2023

Category: Getting help

Replies: 2

Last updated: 20 December 2023

B CR/ABL1 100%
by cehcsucf (Dec 20)

I have done a fair number of dose reductions and even periods of no meds to let my body recover. In fact, I stopped Scemblix today for a week and will start up at half my prior dose as I was having

by RC Kirk (Dec 19)

Hi Charlie, welcome to the forum!
I was also diagnosed in 2012 and have taken Gleevec, Sprycel and then back to Gleevec. I've never had serious side effects except for an episode of tachycardia

by cehcsucf (Dec 18)

Thank you all for providing a forum. I noticed the kindness of people and the openness of discussions.
I was diagnosed with CML in 2012. At that time my BCR/ABL1 was over 90% and my WBC was 211.
Category: Getting help

Replies: 2

Last updated: 20 December 2023
Ontasigna on 16 September 2020

Category: Side effects

Replies: 5

Last updated: 20 December 2023

Herbal Green Tea when on Nilotinib
by 3oK@ (Dec 20)

I don't think that drinking a cup or 2 of tea can have any effects on CML, but supplements definitely can and it's very complex and individual situation.
There are many signaling pathways on which

by sbp03 (Dec 19)

I recently came across the drug interaction section of NCCN's guidelines regarding herbal supplements. The text states that St John's Wort decreases the TKI's exposure in the body and Curcumin,

by Christine R (Sep 17)

I checked with my consultant about this years ago and she confirmed Green tea was fine. I also checked chamomile tea was ok too.
If in doubt ask your consultant. There are many websites with things

by alexmcpee (Sep 17)

Just avoid grapefruit but the nccn guidlines says avoid all the below on any TKI:
These include:
Turmeric
Gingko biloba
Green tea extract
St. John’s Wort
I
Category: Side effects

Replies: 5

Last updated: 20 December 2023
Evie on 5 December 2023

Category: About CML

Replies: 13

Last updated: 16 December 2023

Which brand of Imatinib
by AlastairC (Dec 16)

Pojo I discussed this with Prof Flanagan. He was convinced by their data that body weight was not the biggest factor in the variation. CYP3A4 is the major enzyme responsible for the metabolism of

by JoeP (Dec 15)

Probably the best way to take a TKI would be to have it tailor made to your body. That is not done at this time to my knowledge. From a layman’s perspective I believe that body weight plays a

by AlastairC (Dec 15)

A research group at KCH in London led by Prof RJ Flanagan did some work about 10 years ago on serum concentrations of imatinib, which showed that the level in different patients on the same standard

by Nimbus2 (Dec 15)

That is a good explanation.
When I took Imatinib generics, I did suffer different side effects from brand to brand, particularly gastro symptoms. Accord was the worst.
I believe that it is a fact
Category: About CML

Replies: 13

Last updated: 16 December 2023
Danmason11 on 8 November 2023

Category: Side effects

Replies: 3

Last updated: 10 December 2023

Imatinib side effects
by Wstevenson (Dec 10)

I agree with Pojo about the symptoms! Even in the short 6 months I've been diagnosed and on imatinib, my symptoms have evolved and changed. I no longer have fatigue or nausea, and digestive issues

by Smee (Nov 25)

I am a newcomer to the forum, in the UK having been diagnosed some months ago and on imatinib for only two months so I am still learning. I have the heavy eyes feeling that is common, my

by JoeP (Nov 9)

Dan sorry to hear of your side effects. I was on Imatinib for over ten years. In that time I did experience a myriad of problems. I did and still get slight palpitations. I had problems with my eyes

by Danmason11 (Nov 8)

Hi all
Having posted a few weeks ago about potentially changing TKI (which I haven’t) and in that post saying I hadn’t really suffered any side effects (just over 2 years since diagnosis) the last
Category: Side effects

Replies: 3

Last updated: 10 December 2023
Alien69 on 8 November 2023

Category: About CML

Replies: 3

Last updated: 10 December 2023

Boosting immune system in chronic myeloid leukemia may lead to discontinuation of blood cancer drugs
by JoeP (Dec 10)

“ The story of the search for p53--the most important gene in medicine.” looks good. I think I may read it. Thanks!

by 3oK@ (Nov 12)

As a layperson, my understanding is that NK cells cannot make significant difference in cancers, but only repair/reactivation of P53 can. Specifically in CML, most people (90%+) do not have mutated

by JoeP (Nov 9)

Yes I read these articles. Here is another one that gives percentages by different blood components to predict TFR adherence, https://ashpublications.org/blood/article-abstract/doi/10.1182/blood.202

by Alien69 (Nov 8)

See these articles:

1 - https://medicalxpress.com/news/2023-11-boosting-immune-chronic-myeloid-l...

2 - https://www.nature.com/articles/s41375-023-02074-w
Category: About CML

Replies: 3

Last updated: 10 December 2023
Lucky Utubor on 24 November 2023

Category: Blood tests

Replies: 1

Last updated: 5 December 2023

High platelet and benign tumor growth
by hannibellemo (Dec 5)

Hi, Lucky, I really don't know what to say about your platelet situation, sorry.
I'm going to throw this out there as a possibility for the benign tumors though. Because you are on dasatinib and

by Lucky Utubor (Nov 24)

Hi,
I have been experiencing high platelets for over a year now for this reasons my medications was changed from imatinib to dasatinib and I was placed on a 1000mg of hydroxyurea but so far the
Category: Blood tests

Replies: 1

Last updated: 5 December 2023