You are here

Forum

Ray Sell on 9 September 2020

Category: Treating CML

Replies: 32

Last updated: 17 December 2020

Switiching from Imatinib to sprycel
by argearge (Dec 17)

An update. Just my results back. After 30 months 0,13% IS with imatinib 600. No need yet to switch to dasatinib. My onc wants to try dasatinib 50mg if the imatinib will fail. 3 months ago my results

by RC Kirk (Nov 17)

It's been nearly three years ago, so my memories aren't too fresh. IIRC it was only a few days before I noticed the irregular beats. I started at 100mg/day, then went down to 50

by Ray Sell (Nov 16)

RC Kirk
It took 11 days from starting to start giving me IHR. I felt lots better on Sprycel. Did things because I wanted to, not because I had to.
How long did it take for yours to

by RC Kirk (Nov 16)

Hi Ray,
Your experience changing from imatinib to dasatinib is very similar to mine. I experienced irregular heartbeats when starting dasatinib. The worst was when I had an episode of
Category: Treating CML

Replies: 32

Last updated: 17 December 2020
Sherley on 8 November 2020

Category: Treating CML

Replies: 8

Last updated: 30 November 2020

Switching meds from Dasatinib to nalotinib
by Sherley (Nov 30)

Thanks Ian! I really appreciate your input. Yes I talked to my second doctor which he has actually been there from day one but only as a second opinion bc o am 3 hours away. He

by ipmaki (Nov 17)

Hi Sherley,
Just thought I would second what you have been told on the forum. I am in a similar boat where I am on Sprycel 100mg and got down to 0.106% at 24 months and have increased (and plateaued

by kat73 (Nov 11)

Totally agree with Alex.

by alexmcpee (Nov 8)

No problem you’ve got good advice there stick to that and listen to clinical trial doc and maybe switch doctors if they persist with this idiotic recommendation. You need the experience with
Category: Treating CML

Replies: 8

Last updated: 30 November 2020
Mosalem2093 on 19 November 2020

Category: Treating CML

Replies: 0

Last updated: 19 November 2020

Vidaza & Spyrcel alternative Questions
by Mosalem2093 (Nov 19)

Hi all,
My father is 79 years old and he is a CML patient since 2011.
8 months ago, they have switched to Sprycel but a month ago he was hospitalized due to ineffective Sprycel. He has been through
Category: Treating CML

Replies: 0

Last updated: 19 November 2020
Maggi 813 on 1 July 2020

Category: Treating CML

Replies: 21

Last updated: 3 November 2020

Lack of response on Nilotinib
by alexmcpee (Nov 3)

Hey,
No it’s a 3 hour fast 2 hours before meds and 1 hour after is the standard across the board x2 a day 12 hours apart. So yeah my question was is he fasting only 2 hours (which is incorrect

by Zaccar (Nov 1)

Hi ,
I think he means people with digestive problem. Absorption is increased with food intake wich is why we have to fast not the other way. If you wanted to increase absorption with a healthy

by Zaccar (Nov 1)

Hi ,
I think he means people with digestive problems. Absorption is increased with food intake wich is why we have to fast not the other way. If you wanted to increase absorption with a healthy

by alexmcpee (Oct 30)

I am interested in your claim about absorption. You mentioned when you changed from 2 - 3 hours you saw drops. I am on this TKI and the standard is to fast for 3 hours not 2 by default x2 times
Category: Treating CML

Replies: 21

Last updated: 3 November 2020
Brett0503 on 18 October 2020

Category: Treating CML

Replies: 15

Last updated: 29 October 2020

BCR-ABL uptick
by David Fitz (Oct 29)

You might be thinking of this one: https://vimeo.com/220445547
I don't have the time to watch it now to check, but the title of that session was "Are we ready for recommendations

by Nimbus2 (Oct 29)

Thank you, David.
I cannot find the appropriate authority now but I have seen a video in which Prof Jane Apperley suggest that those with the b2a2 transcript type experience greater difficulty

by David Fitz (Oct 29)

That's right. The e1a2 RNA encodes p190 fusion protein. b2a2 or b3a2 encode the p210 fusion protein, which is the most common for us lot. c3a2 encodes the even lesser spotted p230 protein which

by Brett0503 (Oct 27)

Good informational video, thanks for sharing
Category: Treating CML

Replies: 15

Last updated: 29 October 2020
Mixail on 25 October 2020

Category: Treating CML

Replies: 0

Last updated: 25 October 2020

Could this be a real new treatment. Thank you.
by Mixail (Oct 25)

Hi all look at this article please and is this look real. Thank you.
https://www.studyfinds.org/leukemia-treatment-targets-protein-in-blood/
Category: Treating CML

Replies: 0

Last updated: 25 October 2020
Zzyzxuk on 22 October 2020

Category: Treating CML

Replies: 10

Last updated: 24 October 2020

Pick Your Poison.... (TKIs actually)
by kat73 (Oct 24)

I ditto Felix. Your doc will probably not go for 50 (even though there is evidence from a study to say starting with 50 dasatinib is fine), but you'd probably be OK for several months at

by Felix (Oct 24)

Hi, if your Doc would let you start on 50 mg instead of 100 mg ,pleural effusions could be avoided .But I don't know if he would agree with this dose because you are only just starting off ,Good

by Zzyzxuk (Oct 24)

I'm leaning towards Dasatinib, because the Nilotinib has a higher rate of strokes, and whilst I know you can't predict your side-effects, that is one side-effect I want to avoid...

by alexmcpee (Oct 23)

I just ran the test came back as 2.0174 intermediate... that sounds better than “high risk” lol.
Category: Treating CML

Replies: 10

Last updated: 24 October 2020
Simon Allchin on 18 October 2020

Category: Treating CML

Replies: 4

Last updated: 21 October 2020

Stem cell transplant advice
by Simon Allchin (Oct 21)

Thanks Alex

by alexmcpee (Oct 20)

Hi Simon,
I also can’t comment but what I can do is wish you nothing but the best for your treatment and I hope one day you can be stable and/or rid of this disease. I am sure you’re in

by Simon Allchin (Oct 20)

BCR-ABL only got below 10% (IS) once but my main challenge has been adverse effects on my liver. Have achieved stability there with the aid of steroids but BCR-ABL back up over 36% (IS). Still

by ColoradoGuy (Oct 20)

I do not have advice regarding that but I am sure a few of the people who have had one will chime in. I think Sandy has a link to her journey for a read. I was wondering what your BCR/
Category: Treating CML

Replies: 4

Last updated: 21 October 2020
Zaccar on 13 October 2020

Category: Treating CML

Replies: 2

Last updated: 16 October 2020

Article posits that non adherance to treatment in CML is widespread! What about you?
by cmljax (Oct 16)

If you cannot have an honest relationship with your oncologist, it's time to find a new one.
Lowering dose requires more frequent testing to insure the disease remains under control.

by alexmcpee (Oct 13)

Personally I respect what the professionals say and if they say this is the dose to take then take it. If for any reason some are tempted to reduce dosage themselves without the advice of those

by Zaccar (Oct 13)

I preface this by saying no judgement please. Do you all respect the posology prescribed by your physician. Did some of you actually decide to avoid the hassle of arguing with your doctors and just
Category: Treating CML

Replies: 2

Last updated: 16 October 2020
savedbygrace on 9 October 2020

Category: Treating CML

Replies: 6

Last updated: 10 October 2020

New to Imatinib
by Roza (Oct 10)

Many Thanks, your story definitely gives new CMLers like me hope. I know I'm lucky to have great treatment available and to be alive. For many like me, I think a lot of the mental drain in the early

by Tbrand (Oct 10)

5 years on imatinib now and no side effects. After the first 4 months all discomforts disappeared. The medication is killing cancer cells and your body is full of dead cancer cells. Your going to

by Roza (Oct 10)

Hi, I am new to imatinib for three months now and also get bone pain, but mostly in the lower legs around the shins which is manageable around the house but really comes on badly after only a short

by alexmcpee (Oct 10)

I 100% agree that anxiety can exacerbate symptoms and cause new ones. That’s been my experience and I too practice mindfulness and meditation it works wonders for me most of the time. There
Category: Treating CML

Replies: 6

Last updated: 10 October 2020
ipmaki on 17 August 2020

Category: Treating CML

Replies: 18

Last updated: 14 September 2020

30 month MMR Therapy Goal?
by argearge (Sep 14)

Thank you. The problem is, I do not have any side effect from the imatinib. What was the reason you changed?

by Felix (Sep 13)

Hi,I changed from400mg Imatinib when I was at 0.4% to Dasatinib.Doc wanted me to start at 100 mg but I refused so I started on 50 mg .I reached Undetectable in less than five months ,I am now

by argearge (Sep 13)

Thanks for your answer. The main questions I have is if TFR is still a real goal and can I still play soccer ? I am in a soccer team. I am afraid of the possible adverse effects, especially the

by kat73 (Sep 13)

Do it. Switch to dasatinib. 140 is too much, but it won't do any harm for a couple of months. By then, I'll lay money you will have a nice reduction in your PCR number and
Category: Treating CML

Replies: 18

Last updated: 14 September 2020
snowman 35 on 3 September 2020

Category: Treating CML

Replies: 3

Last updated: 4 September 2020

Are we in higher risk for secondary cancer?
by snowman 35 (Sep 4)

This is exactly what i persumed. Also I read that they did not know about the patients heridity, if they were smoking or if they had other therapies for other diseases....

by Nimbus2 (Sep 3)

I have googled and have found that the data presented are inconsistent. The lists of the most predominant second cancers vary from report to report. I find it unclear whether the increase in second

by alexmcpee (Sep 3)

I have read that those that suffer from Cancer are upto x4 times more susceptible to get another Cancer. I can’t remember the source.
But I prefer to live in the now and at the moment that

by snowman 35 (Sep 3)

Hi every one!

I accidentally read an old post (i wish I had not) and then some old studies that cml patients have about 30% more chances for secondary cancers.Is anyone a were of this?
Category: Treating CML

Replies: 3

Last updated: 4 September 2020
sandy craine on 27 August 2020

Category: Treating CML

Replies: 0

Last updated: 27 August 2020

STAMP inhibitor asciminib (ABL001) meets primary endpoint of Phase III CML study
by sandy craine (Aug 27)

Asciminib - the new TKI developed by Novartis - Data from phase lll study (hopefully) show we can add this to our treatment options for CML, especially for those of us who are intolerant or
Category: Treating CML

Replies: 0

Last updated: 27 August 2020
hierplane on 3 August 2020

Category: Treating CML

Replies: 2

Last updated: 22 August 2020

Veenat (Imatinib) - Where to Buy
by Vijay Kumar Verma (Aug 22)

From India,lots of generic imatinib brand available. You can also buy generic dasatinib.

by sandy craine (Aug 4)

Hi,
I am not sure of the situation regarding access to generic imatinib in Pakistan and I can't find much information, so I suggest you contact the following CML patient group who may be able to

by hierplane (Aug 3)

Hi
Can anyone advise where I might be able to buy GENUINE 400mg veenat in Pakistan or the UK please? My mother from Pakistan has CML but no Imatinib is available there.
Thank you!
Category: Treating CML

Replies: 2

Last updated: 22 August 2020
Mbwynne on 21 August 2020

Category: Treating CML

Replies: 2

Last updated: 22 August 2020

Swollen Eye lids
by Mbwynne (Aug 22)

Thank you John very much.

by johnw1001 (Aug 21)

Hi
This is quite a common condition and side effect of tki s and is referred to as eyelid edema or peri -orbital odema when it surrounds the tissues of both eyes and especially eyelids.There is a

by Mbwynne (Aug 21)

hello, has anyone come up with any way to reduce swelling of the eye lids and face - it is a reaction to 100 Disatnib.

Many thanks Mary
Category: Treating CML

Replies: 2

Last updated: 22 August 2020
Zaccar on 13 August 2020

Category: Treating CML

Replies: 11

Last updated: 15 August 2020

Newbie reasonnable doctor expectation?Glevec or Tasigna as first line treatment?
by Zaccar (Aug 15)

Yes allastair I'll avoid missing doses thanks for the advice! Will you go lower than 200mg?
Just by talking to you guys and thinking about my treatment goals dose reduction

by AlastairC (Aug 15)

Hi. I'm not sure about another TFR attempt. My first aim to get back to log 4 reduction - BCR-ABL below 0.01%. If I can get there and sustain that for a few months I would want to go back to

by alexmcpee (Aug 14)

I can echo all those feelings buddy and those thoughts sometimes creep back in. You’ll have months when it’s relatively easy and others where you are consumed by it. At least that’

by Zaccar (Aug 14)

Thanks for that reality check. Quite frankly the fact that we can expect to live normal lifespan is a miracle on it's own. Happy to know that there's a light at the end of the tunnel.
You
Category: Treating CML

Replies: 11

Last updated: 15 August 2020
Ontasigna on 11 August 2020

Category: Treating CML

Replies: 1

Last updated: 12 August 2020

Aspirin and Tasigna
by Mixail (Aug 12)

I take asprin every day with 400mg of Imanatib for 2 years no problem so far. But check with your oncologist. Mine said it was ok for me.

by Ontasigna (Aug 11)

Hi All,
I have been advised to take Aspirin by Physician for severe back pain.
I did check the drug interaction. It show No interaction.
Shall i go ahead? Has anyone taken it.
Kindly share your
Category: Treating CML

Replies: 1

Last updated: 12 August 2020
MartinZA on 29 July 2020

Category: Treating CML

Replies: 4

Last updated: 8 August 2020

Thoughts on Vitamin D
by Lucky (Aug 8)

Hi Tom,
May be you are right. May be TKI-s cause the levels of vitamin D to go down and we need to supplement with higher dosage. When I started treatment with Tasigna 600mg in Oct 2020 I

by tom888 (Aug 1)

I would also like to mention something about vitamin D. I have noticed that in cases of people not suffering from cml, vitamin D rises faster than all of us. In our case it goes up with difficulty

by MartinZA (Aug 1)

Hi scuba
Wow! Thank you so much for taking the time to write me this incredibly detailed response. So interesting, so practical and so very valuable. The timing regarding half-

by scuba (Jul 29)

Hi Martin,
Most cells in our bodies have the vitamin D receptors (VDR) on their membrane surfaces especially white blood cells. Vitamin D is essential in activating T-cells which fight cancer and
Category: Treating CML

Replies: 4

Last updated: 8 August 2020
Whitey on 4 August 2020

Category: Treating CML

Replies: 7

Last updated: 7 August 2020

100 mg sprycel
by POPPY (Aug 7)

My boyfriend was on 100mg earlier this year & his platelet counts crashed & his BCR-ABL went up to 0.15 (prev was 0.05 when he was on Nilotinib).
His doc reduced it to 70mg and his

by Whitey (Aug 6)

My doctor is worried that I may develop a resistance to sprycel if I lower dose. I suppose its possible, but seems unlikely. I am going to push for dose reduction to 50mg. Hope to be at 20mg

by scuba (Aug 5)

100 mg is very high for most people. New protocols are suggesting 50 - 70mg starting dose. And this was known before 2018.

https://pubmed.ncbi.nlm.nih.gov/29723397/

Dosage is set during clinical

by Whitey (Aug 5)

Thanks, I agree. The 100mg is just draining me of all energy, hoping 50mg will change that.
Category: Treating CML

Replies: 7

Last updated: 7 August 2020
bendicco on 19 July 2020

Category: Treating CML

Replies: 0

Last updated: 19 July 2020

CBD
by bendicco (Jul 19)

Hi all. I have read that many of you CML folks have been using CBD for the pain (that our oncologists say is not from the CML or the meds!) I was diagnosed almost 4 years ago with CML and am
Category: Treating CML

Replies: 0

Last updated: 19 July 2020