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WillO on 24 November 2023

Category: Treating CML

Replies: 3

Last updated: 3 March 2024

Nilotinib to Imatinib
by WillO (Mar 3)

Hi Martin. Thanks for the reply, it’s good to know it worked out for you. I seem to be ok so far. Some minor differences but nothing significant.

Cheers

Will

by MartinZA (Mar 1)

Hi, sorry for the late reply to this but I somehow missed it in November.
I went "backwards" from dasatinib to imatinib, so it is definitely possible to go from a 2nd generation drug to imatinib.

by JoeP (Nov 24)

WillO I deleted my initial response but I did want to convey this thought. If you’ve been on Nilotinib for 5 years then that probably means you haven’t reached MMR4.5. I hope I am wrong but if that

by WillO (Nov 24)

Hi. Anyone have any experience of changing from Nilotinib to Imatinib? I have a new care provider and this is my option. I have successfully been taking Nilotinib for the last 5 years. I have
Category: Treating CML

Replies: 3

Last updated: 3 March 2024
Vikram on 1 March 2024

Category: About CML

Replies: 0

Last updated: 1 March 2024

Cancer tablate
by Vikram (Mar 1)

https://www.google.com/amp/s/www.ndtv.com/india-news/tata-institute-clai...
Tata Institute Claims Success In Cancer Treatment - With "Rs 100 Tablet"

The doctor said there were challenges
Category: About CML

Replies: 0

Last updated: 1 March 2024
SarahCMLjourney on 19 February 2024

Category: Blood tests

Replies: 6

Last updated: 29 February 2024

New to CML any advice welcomed
by MartinZA (Feb 29)

Hi Sarah,
Sorry to hear that you had to join our little community at such a young age!
I just wanted to share some hope with you as I was also on the younger side when diagnosed, although a bit

by SarahCMLjourney (Feb 20)

Thanks for all of your responses!
I will definitely go through the forum to find those questions etc
Appreciate the kind words

by David Fitz (Feb 20)

Hi Sarah,
For what its worth, I was young at the time of diagnosis (early thirties) and it took me a lot longer than usual to respond. But I did respond!
I think I was around 20% at 3 months.
David

by AlastairC (Feb 20)

Sarah very sorry that you have joined this club at such an young age, but it likely means that you will be a member for many decades!
As Buzz says your initial trend is down, so the imatinib is
Category: Blood tests

Replies: 6

Last updated: 29 February 2024
suvankardas on 16 February 2024

Category: Drug-food interactions

Replies: 4

Last updated: 21 February 2024

Upper back pain
by suvankardas (Feb 21)

It works! Thank you for your advice.

by JoeP (Feb 20)

I believe it’s tied to inflammation. I used anti-inflammatories but that just basically gives you comfort for a short time. You definitely don’t want to be on those for a long period of time. Try

by suvankardas (Feb 19)

What natural supplement would you suggest to manage my upper back pain. It’s unbearable now-a-days. I never had pain at that part of my body since I started imatiniv in 2022 Nov. Taking homeopathic

by JoeP (Feb 18)

I assume you are referring to Imatinib in this thread after looking at your other thread, Mebendazole with IMATINIV. Unfortunately back pain was a major side effect that I experienced while on
Category: Drug-food interactions

Replies: 4

Last updated: 21 February 2024
suvankardas on 16 February 2024

Category: Drug-drug interactions

Replies: 2

Last updated: 16 February 2024

Mebendazole with IMATINIV
by suvankardas (Feb 16)

Thanks dear,?it is so helpful

by David Fitz (Feb 16)

You can take mebendazole, no problem. It has no known interactions with imatinib.
https://www.drugs.com/interactions-check.php?drug_list=1321-0,1535-0

by suvankardas (Feb 16)

Can I take mebendazole with imatiniv. Does it interfere with the cancer drug?
Category: Drug-drug interactions

Replies: 2

Last updated: 16 February 2024
Danmason11 on 20 December 2023

Category: Side effects

Replies: 3

Last updated: 16 February 2024

Timing of taking imatinib and heart palpitations
by suvankardas (Feb 16)

I am 44 and have been on imatiniv 200+200 since 13 months. Off late I also have experienced the same thing like you. I take the med around 10 at night and experience the same thing like increased

by PhilipDavid (Dec 20)

Hi. I have been on imatinib for nearly 8 years . After many months ( in my first year ). I gravitated to taking it just before bedtime. Avoiding side effects - which were panic attacks and fatigue

by 3oK@ (Dec 20)

I developed sleep apnea and would be awaken by sharp pain below ribs when sleeping on the left side while on Imatinib. I had x-rays and ultra-sound imaging and they could not find anything, just

by Danmason11 (Dec 20)

Hi all
Hope everyone is doing okay.
I’ve posted a couple of times on here before about experiencing heart palpitations. Currently on Imatinib 400mg.
Pretty sure there is nothing more sinister going
Category: Side effects

Replies: 3

Last updated: 16 February 2024
Justina on 23 January 2024

Category: Uncategorised

Replies: 3

Last updated: 15 February 2024

Imatinib 800mg
by Buzzm1 (Feb 15)

Talong a high TKI dosage, for a prolonged period of time, increases the probability of problems created by the side-effects of the TKI. Ultimately the TKI dosage becomes the CML patient's

by Dustylloyd (Feb 14)

Hi Justina,
My comment is more based on John’s comments, I’ve had Cml for 9 years and for the last 8 years I’ve been on 800mg Nilotinib, 400 in the morning, 400 12 hours later, I’ve been in mmr for

by johnw1001 (Jan 30)

Hi Justina,

Historically there have been some studies/trials possibly in Australia that monitored a sample of patients taking 800 mg of glivec/imatinib daily.A proportion due to side effects

by Justina (Jan 23)

Hi,

Has any one ever taken 800mg of imatinib?

Any side effects?
Category: Uncategorised

Replies: 3

Last updated: 15 February 2024
pianogrl44 on 7 February 2024

Category: Treating CML

Replies: 4

Last updated: 12 February 2024

Vertigo after generic switch
by johnw1001 (Feb 12)

Like Alistair I would suggest that you try to use Sandoz as a generic-made by Novartis who produce the branded Glivec .The name comes from the former Pharma company Sandoz that merged with Ceiba-

by pianogrl44 (Feb 8)

Thanks all for your input. My hematologist is having me switch generic brands right away rather than waiting it out, so at least she took the vertigo concern seriously. I will be starting Accord

by AlastairC (Feb 8)

This has not been an issue for me over 17 years on imatinib. I changed from Novartis branded Glivec to generics a fairly long time ago, over the years and not had any significant differences with

by ColoradoGuy (Feb 7)

I remember feeling Vertigo and searching for it on the forum. I did go through a period when it would come on suddenly. I don't know what caused it, but I have not felt it for some time. Like I
Category: Treating CML

Replies: 4

Last updated: 12 February 2024
scuba on 8 February 2024

Category: Uncategorised

Replies: 1

Last updated: 8 February 2024

Shiitake Mushrooms ...
by healthyhabits (Feb 8)

I believe it. Mushrooms are crazy. Thank you for sharing!

by scuba (Feb 8)

https://www.healthday.com/healthpro-news/conditions/shiitake-mushroom-in...
"The researchers observed increased ex vivo proliferation of γδ-T cells and natural killer (NK) T-cells (60 percent and
Category: Uncategorised

Replies: 1

Last updated: 8 February 2024
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