You are here

Forum

colleencrane1 on 10 November 2020

Category: Uncategorised

Replies: 16

Last updated: 15 November 2020

Newbie Here! Diagnosed on Election Day :(
by colleencrane1 (Nov 15)

Thank you so much for the article and the information! I will be talking with my Dr. tomorrow. Colleen

by scuba (Nov 15)

Hi Colleen,
Consider discussing with your doctor a lower starting dose for sprycel (dasatinib) at 50 mg.
https://pubmed.ncbi.nlm.nih.gov/31553487/
Dasatinib is potent and continuing research is

by colleencrane1 (Nov 15)

I just got the book yesterday. I look forward to reading it. Thank you all for the suggestion!

by David787 (Nov 15)

Just finished reading the book, John. What a fabulous read and an amazing cast of characters...and it’s all real - bought several tears to my eyes.
Best
David
Category: Uncategorised

Replies: 16

Last updated: 15 November 2020
Justine on 12 November 2020

Category: About CML

Replies: 5

Last updated: 14 November 2020

Covid-19 and leukemia
by Justine (Nov 14)

Thanks John, that is really interesting! I look forward to learning more about these trials as they progress -- as I'm sure we all do! Wouldn't that be a nice surprise, unexpected benefit to

by johnw1001 (Nov 14)

Hi All,
I have posted on this before. Those of us on tki s might actually be well protected by the effects of in particular imatinib and dasatinib as being what I call protectors against the

by Justine (Nov 12)

Thanks Alex and Richard for your comments. I wondered about that and am reassured but of course will still be cautious.

by Richard42 (Nov 12)

I agree with Alex. In discussion with my consultant, the distinct impression I have is that unless your CML is such that your immune system is compromised (which is not likely if you are
Category: About CML

Replies: 5

Last updated: 14 November 2020
hannah2010 on 11 November 2020

Category: Uncategorised

Replies: 6

Last updated: 14 November 2020

WBC 15.5
by hannah2010 (Nov 14)

Hi
thanks for replying John, I had a pcr result yesterday of undetectable but in my mind I can’t let the neutrophillia go it’s still bothering me and wondering if and worrying i

by johnw1001 (Nov 14)

Hi Hannah,
Your specialist will be looking at your most recent PCR-bcr/abl from August 2020 and those previous to that date and these seem to indicate that you are nearly

by hannah2010 (Nov 11)

Thank you, the consultant wasn’t even concerned it was me who was

by AlastairC (Nov 11)

Hi Hannah, his could easily be explained by you having a sub-clinical infection which your body is resolving without you feeling unwell. It needs checking out but I think not likely to be anything
Category: Uncategorised

Replies: 6

Last updated: 14 November 2020
MJP on 11 November 2020

Category: Blood tests

Replies: 1

Last updated: 12 November 2020

Finally
by alexmcpee (Nov 12)

When you say finally I thought you meant you’d been on this path for many years. 29 months to undetected is exceptional and should be celebrated I certainly would. It’s taken me this

by MJP (Nov 11)

After 29 months, I have my first undetected result. Currently on 70mg dasarijin. Started on 100 for about 18 months. Hoping to convince my Dr to take me to 50.
Category: Blood tests

Replies: 1

Last updated: 12 November 2020
cousineg2 on 12 November 2020

Category: Clinical trials

Replies: -1

Last updated: 12 November 2020

NEW - Hematopoietic stem cell transplantation using single UM171-expanded cord blood

Category: Clinical trials

Replies: -1

Last updated: 12 November 2020
tom888 on 22 October 2020

Category: Drug-drug interactions

Replies: 2

Last updated: 11 November 2020

olive leaves
by tom888 (Nov 11)

Thanks for your post. The question about all these natural products is the following .... Can one be cured by applying natural remedies with dedication? We all find that many foods and herbs that

by johnw1001 (Nov 9)

Hi,
Thanks for posting
It is not unusual to come across studies about plant based extracts and their benefits for instance you might have seen the protaganists for the use of resveratrol an extract

by tom888 (Oct 22)

https://www.hindawi.com/journals/omcl/2014/927619/
Category: Drug-drug interactions

Replies: 2

Last updated: 11 November 2020
johnw1001 on 10 November 2020

Category: Other conditions

Replies: 2

Last updated: 11 November 2020

Live/inactivated vaccines and CML-Covid 19 vaccines
by Richard42 (Nov 11)

Hi John
Yes, the Pfizer/BioNtech vaccine in the news this week is messenger RNA based - as indeed is the Imperial College one. Scientifically, that's pretty exciting as its new technology. On

by sandy craine (Nov 11)

Hi John,
yes this is a subject that I have been thinking about for some time. You might find the following article helpful. I think it really depends on the individual's immune status as to

by johnw1001 (Nov 10)

Hi All,
The subject of whether CML patients should risk being offered live vaccines has arisen before on Forum largely in the context of those proposing to travel to Yellow Fever infected regions
Category: Other conditions

Replies: 2

Last updated: 11 November 2020
David787 on 9 November 2020

Category: About CML

Replies: 5

Last updated: 10 November 2020

Light headedness/Dizzyness
by Nimbus2 (Nov 10)

I was started on imatinib. It is the cheapest of the TKIs so haematologists are driven in that direction. I have also been told that it is the safest TKI for those with conditions such as diabetes

by David787 (Nov 10)

Hello John
Thanks for writing. I am about to embark on Imatinib - good to know you have been taking it for 15 years! The advice is much appreciated and follows the guidelines given in the mass of

by johnw1001 (Nov 9)

Hi David,
You dont say which tki that you will be taking?
With nilotinib you will need to fast but with the others you might find that taking the pill with a substantial meal and a few glasses of

by David787 (Nov 9)

Many thanks Denise, I shall take your advice.
David
Category: About CML

Replies: 5

Last updated: 10 November 2020
David787 on 2 November 2020

Category: Getting help

Replies: 16

Last updated: 9 November 2020

Newbie!
by David787 (Nov 9)

Has anybody else had the symptoms of occasional light headedness and slight shivering with CML? My GP seems to think they are CML symptoms. In any event, starting Imatinib this week so hopefully

by David787 (Nov 6)

Hello David, many thanks for that. I certainly wasn’t prepared for how wiped out I have been feeling.
Rather than just totally knackered, I have been feeling faint/slightly dizzy when I do

by David Fitz (Nov 6)

Hey David - Don't be concerned that you're feeling exhausted now, that's totally normal. Your body is dealing with a lot - hydroxycarbamide takes a shotgun to lots of those bad white

by David787 (Nov 6)

Thanks for yours Eva, well I am not doing 3 miles any more! The last couple of days I felt very weak and useless. Have just finished the hydroxycarbamide, TKIs start soon! Very encouraging to hear
Category: Getting help

Replies: 16

Last updated: 9 November 2020
Justine on 24 July 2017

Category: Side effects

Replies: 16

Last updated: 8 November 2020

Mental/emotional issues
by kat73 (Nov 8)

Why do they want to switch you?

by Sherley (Nov 8)

Hi. I’m so sorry to hear about your diagnosis. That is tragic that happens to you. I’ve been fighting CML for two years now. Started with gleevec which made me so sick all

by SWFlorida40 (Oct 11)

hi my name is Steven I was diagnosed in February 2020
it’s been rough
tried sprycel for about 4-5 months then it caused fluid around my heart and lungs I had to have it drained

by Parklife (Feb 2)

Hi.
Thanks for your input and opinion.
I have tried Imatinib, then Nilotinib, then Dasatinib (Worst for me), finally I am now on Bosutinib.
We have agreed to see things out as I have seen minor
Category: Side effects

Replies: 16

Last updated: 8 November 2020
Kathyp on 20 October 2020

Category: Uncategorised

Replies: 6

Last updated: 6 November 2020

Shielding covid
by Nimbus2 (Nov 6)

Yes, it seems that we must follow the new lockdown law plus the advisory "extra precautionary shielding measures". I will miss swimming but otherwise I will follow the new rules to the

by Kathyp (Nov 6)

I’ve received an email from the government saying to only go out fir exercise and drs appointments And my free Asda delivery slot has been extended to March 🤷‍♀️X

by EvaH (Nov 6)

I'm not living in the UK, but I have been going out socially and living as normal since august. In a normal week im exposed to about 10 people, most of whom are a closed groups and much of my

by alexmcpee (Oct 21)

Yeah I got all that info in the 1st wave but nothing new since the rising rates.
Category: Uncategorised

Replies: 6

Last updated: 6 November 2020
maya55 on 20 August 2013

Category: Uncategorised

Replies: 4

Last updated: 4 November 2020

weight loss surgery and gleevec
by 802eimmun (Nov 4)

Hello, I know this post has been posted a few years back. But I am just curious if you were ever approved or received the Sleeve gastrectomy?

by sandy craine (Aug 22)

Maya,

Maybe another option would be to change to another TKI? There does seem to be a problem for some with weight gain and therapy with imatinib (Glivec). From what I can gather the newer TKI

by maya55 (Aug 22)

i hope they will know.

i will let you know if i will find out.

my deep concern is that indeed there will be problems of absorption with the gleevec, in that case i will not do the

by sandy craine (Aug 21)

Dear Maya,
This kind of surgery seems a pretty drastic step to take. I have no experience and hesitate to advise you on this. It might be that apart from the possible problems of absorption of
Category: Uncategorised

Replies: 4

Last updated: 4 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
Zzyzxuk on 28 October 2020

Category: Uncategorised

Replies: 3

Last updated: 28 October 2020

CML Journey: Week 4
by Nimbus2 (Oct 28)

You may get some early-stage reactions to dasatinib which will not endure. Within a week of starting on dasatinib, I was very ill for several days with vomiting and vertigo. I telephoned my

by Zaccar (Oct 28)

Hey,
I have a similar timeline of diagnosis. Sorry that you had to go trough this. These are probably surreal times for you, It's like being hit by a truck. Hopefully you'll get out of thus

by alexmcpee (Oct 28)

Hi there,
Exactly like you I wanted to put down in words what I was going through and it is a good way to come to terms and offload a lot of fear and emotion. I 100% get where you are, I was in the

by Zzyzxuk (Oct 28)

Hope you guys don't mind me trying to put my thoughts into writing here? I feel like I need to write to come to terms with what's happening for me, and don't feel like sharing
Category: Uncategorised

Replies: 3

Last updated: 28 October 2020
Zaccar on 25 October 2020

Category: About CML

Replies: 4

Last updated: 27 October 2020

Do all CMLers eventually become MR4 or better?
by Zaccar (Oct 27)

Trying to know how much I should care about it. Frankly at this point I don't, but yes TFR would be nice. I think we stand a good chance of witnessing ground breaking treatments that will at

by alexmcpee (Oct 27)

I second that mate. The only conclusion I have come to is that these people have moved on with their lives and no longer visit the site much. I am confident they didn’t all die off?!? And

by ColoradoGuy (Oct 26)

I really wish more people would chime in if they have been years on and not MR4. I am 3+ years and only briefly reached MMR. Now just outside at a very low CCyR but really it's like

by David Fitz (Oct 26)

Hi there,
No, not every patient does make it to MR4 or better. And they don't need to - MMR (also called MR3) is generally considered the safe zone but you will also find people who are a little
Category: About CML

Replies: 4

Last updated: 27 October 2020
saifur360 on 25 October 2020

Category: About CML

Replies: 1

Last updated: 25 October 2020

Which test should I do?
by Zaccar (Oct 25)

You should go see a doctor. It's not necessarily linked to imatinib or CML. Because of heavy list of side effects a natural tendancy is to blame everything on TKIs. We can still get sick of

by saifur360 (Oct 25)

Last 7 days I feel pain in my belly. Day by day this pain is increasing. At first I thought its side effect of imatinib (veenat 400) then I stopped imatinib for 5 days. But still now I feel this
Category: About CML

Replies: 1

Last updated: 25 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
Lavinia on 18 October 2020

Category: Side effects

Replies: 4

Last updated: 24 October 2020

About to start 100mg desatinib and worried about side effects, exercise and work!
by kat73 (Oct 24)

Lavinia - To your underlying question, does anyone get back to normal and just take the pill and go on as before: Al-l-l-mo-o-ost. Almost normal. The cliche "new normal.

by David Fitz (Oct 20)

Hi Lavinia,
People have different reactions to the medication. Loads of people just pop their pills down, and go on with their life pretty much as normal. They don't tend to post on CML forums

by Simon Allchin (Oct 20)

I’ve tried four different TKIs over the last theee years, including Dasatinib and in all four it was my red blood cell count stayed pretty steady. Red cells transport oxygen around the

by Felix (Oct 18)

Hi Lavinia ,scroll down to Switching from Imatinib to Sprycel under the name Felix ,that's me .It was my experience ,get back to me with any questions will be glad to try and help ,Denise.
Category: Side effects

Replies: 4

Last updated: 24 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