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Tanya Cuffe on 23 November 2018

Category: Uncategorised

Replies: 2

Last updated: 23 November 2018

Supplements on treatment
by Tanya Cuffe (Nov 23)

Yes thanks Alex hope yr trtmnt is going well

by alexmcpee (Nov 23)

Hi there
My Oncologist said don’t waste your time or money as they don’t do anything.
Many on here suggest taking Magnesium, Circumin, Vit D and high dose C.
Ive just ordered some Circumin and will

by Tanya Cuffe (Nov 23)

Would like to know what majority of people take supplements alongside treatment,and what supplements are essential.Have heard Vitamin D is s must,alongside magnesium supplentation.Am now adding Cod
Category: Uncategorised

Replies: 2

Last updated: 23 November 2018
RC Kirk on 22 November 2018

Category: Uncategorised

Replies: 4

Last updated: 24 November 2018

Is there a way to post pictures?
by RC Kirk (Nov 23)

Thanks David. I knew you'd have an idea!
Kirk

by David Fitz (Nov 23)

You ought to be able to ... let me look into it and I will post instructions.
David

by Nimbus2 (Nov 23)

Yes, I had the same thought. How did he do it?

by Alaina (Nov 23)

Wish I could help. I can't even get a profile picture to upload.
Category: Uncategorised

Replies: 4

Last updated: 24 November 2018
alexmcpee on 22 November 2018

Category: Uncategorised

Replies: 2

Last updated: 22 November 2018

Mobile CML app
by alexmcpee (Nov 22)

Hi Kirk
Thats a really good idea! I like it.
I’ll add that to the list once I’ve accumulated enough feedback.
Glad that you think it’s a good idea. Once I’ve made the iOS one and it’s used I’ll

by RC Kirk (Nov 22)

Hi Alex,
This sounds like a cool idea! My first thought about the PCR graph is that it would be great to have some sort of analysis done that would give feedback to the user if the trend was

by alexmcpee (Nov 22)

Hi guys
I am a mobile software developer with CML I am thinking of developing a free app initially for iOS. Maybe with non intrusive ads so that I can make a little money and also donate some to
Category: Uncategorised

Replies: 2

Last updated: 22 November 2018
alexmcpee on 20 November 2018

Category: Uncategorised

Replies: 7

Last updated: 22 November 2018

Magnesium and Circumin
by Alaina (Nov 22)

Absolutely. You'll find a lot of experts on this site. And I'm sure everyone here understands and feels much the same. Since we are on the same medication I can email you a few side effects I've

by alexmcpee (Nov 22)

Hi Alaina
I am so grateful for your reply. Many thanks for taking the time to do so. This is all very new to me so getting pains and weird sensations isn’t the norm for me and I am guessing over

by Alaina (Nov 21)

Hey Alex,
I understand and am glad I'm not the only one either...I get numbness and tingling but it is intermittent (so far). This week it's my left thumb that feels the tingling. But I've

by alexmcpee (Nov 21)

Hi Alaina
Many thanks for your reply. In a selfish way glad I am not the only one. The pain is rather odd and it’s consistent I keep waking up expecting the pain in shoulder and arm and numbness in
Category: Uncategorised

Replies: 7

Last updated: 22 November 2018
Antje on 19 November 2018

Category: Getting help

Replies: 6

Last updated: 21 November 2018

Infections and antibiotics
by AlastairC (Nov 21)

Discussion with links about echinacea/TKI interaction on this (now quite old) thread
Echinacea also listed here as interacting with imatinib.
Alastair

by CCLilly (Nov 21)

I had heard of avoiding grapefruit and St. John's Wort but not Echinacea. Can you provide a link please? I've always used homemade Elderberry Elixer for colds but maybe I should double check all my

by Poppert (Nov 19)

I'm also considering vaccinate against the flu this year for the first time ever.
My WBC and neutrophils has been a bit low ever since diagnosis in January so I'm careful to wash hands, don't

by AlastairC (Nov 19)

I agree about the handwashing other hygiene methods to reduce the risk. One thing what is not open to users of TKIs is echinacea. I used it pre-diagnosis to ward off colds etc. during the winter and
Category: Getting help

Replies: 6

Last updated: 21 November 2018
HKBails on 18 November 2018

Category: Treating CML

Replies: 8

Last updated: 20 November 2018

Biopsies
by David Fitz (Nov 20)

In the UK, it's a job quite often given to a SHO (senior house officer) so they can get experience. So people's experiences can vary quite a lot if it's someone who hasn't done it many many times.

by Gitel (Nov 20)

There has been discussion of BMB on this website over the year. Many fear it, others say no problem. Rereading this set of posts I wonder if the techniques used in the United States might differ

by HKBails (Nov 19)

Thank you all, helpful to know. I will look into getting a more experienced person as clearly based on the time taken and the fact I am still in discomfort 3 weeks on it must not have been done well

by David Fitz (Nov 19)

All medical procedures have some risk. A general anaesthetic certainly does, and it would in most cases seem disproportionate risk for a BMB.
Personally, I found a tooth extraction more painful than
Category: Treating CML

Replies: 8

Last updated: 20 November 2018
Nimbus2 on 13 November 2018

Category: Uncategorised

Replies: 14

Last updated: 20 November 2018

Mutations
by cmljax (Nov 20)

See the link above from RC Kirk

by RC Kirk (Nov 20)

You may run into the K562 designation as you search the web for information about wild-type versus mutant BCR-ABL proteins.
Here's a link to "The K562 Story": http://cmlc.ml/community.lls.org/

by Nimbus2 (Nov 19)

Thank you, all, for the extraordinarily helpful postings. I'm still reading and absorbing the information presented here. This has also given me new phrases and words for extra googling.
As far as I

by cmljax (Nov 19)

And we could all get hit by lightning tomorrow and die - just kidding. I try really hard not to focus on whether or not I will lose response. Most days I'm successful at this, but
Category: Uncategorised

Replies: 14

Last updated: 20 November 2018
SorubhMaggo on 19 November 2018

Category: Getting help

Replies: 2

Last updated: 20 November 2018

Night Sweat
by SorubhMaggo (Nov 20)

Hey John,
Thanks for your prompt reply.
As last night, I did not witness any sweat I am a little relieved. Still, as you suggested, I shall discuss with my doc about it.
Again, I am wondering if

by johnw1001 (Nov 20)

Hi there,
Just some brief comment on your concern regarding night sweats .As you may be well aware night sweats might be one of the possible symptoms one would experience prior to diagnosis .

by SorubhMaggo (Nov 19)

It was last year December 2017 when I was diagnosed with CML with quite similar symptoms as Ciprians. Along with 2 months of history of night sweat which gradually increased, I went for a blood test
Category: Getting help

Replies: 2

Last updated: 20 November 2018
JacqJohn on 19 November 2018

Category: About CML

Replies: 2

Last updated: 19 November 2018

Soft stools & frequent stools every day after started Imatinib
by johnw1001 (Nov 19)

Hi
Just responding regarding what the tki s in particular might do to your GI (gastro intestinal) system.My experience over 12 years of imatinib is that it will result in substantially

by cmljax (Nov 19)

1.1% is close enough that I wouldn't stress out too much about the whole optimal response thing. As long as the trend continues down, you will be fine. GI issues are fairly common with

by JacqJohn (Nov 19)

Hi All resourceful friends,
I’ve been on Imatinib since Nov 2017 and 6 months into this medication, my PCR results is only 1.1% which is not within the standard requirements for optimal response.
Category: About CML

Replies: 2

Last updated: 19 November 2018
Vikram on 19 November 2018

Category: Reproductive health

Replies: 0

Last updated: 19 November 2018

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by Vikram (Nov 19)

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Category: Reproductive health

Replies: 0

Last updated: 19 November 2018
fiona vaughan on 18 November 2018

Category: About CML

Replies: 5

Last updated: 19 November 2018

Newbie on the Block
by cmljax (Nov 19)

Ditto what Alex and David said. I was Dx in SEP 2016 ans started on 300 mg Tasigna 2x/day. Had a few unusual side effects and lots of the more typical ones. I was lucky to be a

by alexmcpee (Nov 19)

Hi Fiona
No problem at all. It wasn’t long ago I started my journey like you. Because I had a large spleen at DX I wasn’t allowed to exercise but as soon as that returned to normal (around a month)

by fiona vaughan (Nov 19)

Thank you Alex and David. I am so glad I have found this site and feel I’m not the only one out there feeling confused and a bit overwhelmed at all the info and do’s and donts. I live in Oman so it’

by David83 (Nov 18)

Hi Fiona,
So sorry you have to join us as truthfully none of us would choose to be here, however the site is a great source of knowledge and support even if you just browse the comments.
I’m still a
Category: About CML

Replies: 5

Last updated: 19 November 2018
Anonymous (not verified) on 17 November 2018

Category: Side effects

Replies: 2

Last updated: 18 November 2018

Imatinib dose reduction
by Anonymous (Nov 18)

Sandy, thanks for your attention. I will discuss it with my doc and wait for the next PCR in order to check if the CMR is similar to the last one. If such happens, then I will reduce the daily dose

by sandy craine (Nov 17)

Hi Silas,
Looking at your molecular response I see no harm in discussing this with your doctor- a trial period to see if a dose reduction would reduce side effects without compromising your

by Anonymous (Nov 17)

Starting from the end of March, I have been taking 400 mg but also facing some side effects (edema and diarrhea).
My q PCR results were MR3 (July) and MR 5,5 (October) and I was wondering if
Category: Side effects

Replies: 2

Last updated: 18 November 2018
autadesiddharth on 15 November 2018

Category: About CML

Replies: 1

Last updated: 16 November 2018

Decitabine therapy during Blast Crisis of CML
by RC Kirk (Nov 16)

Hi Sid,
I found a presentation that mentions when decitabine is used with inecalcitol, it seems to provide better CML stem cell control. Here's the source: https://www.google.com/url?sa=t&

by autadesiddharth (Nov 15)

Hello,
I have posted on this forum a few times regarding my 52yo mother who is currently undergoing treatment for the Blast Crisis of CML. She is currently taking 50mg Dasatinib twice a day(BD). We
Category: About CML

Replies: 1

Last updated: 16 November 2018
jriccoboni on 15 November 2018

Category: Uncategorised

Replies: 1

Last updated: 15 November 2018

Understanding my BRC-ABL blood test
by alexmcpee (Nov 15)

Not to sure but either way that’s a bloody good 3 month response! All I know is the IS (International Standard) is what we go by which states less than 10% at 3 months. So you’re doing great!!!

by jriccoboni (Nov 15)

I got my three month Bcr-Abl blood test back. Meeting with my Doctor tomorrow to discuss the results.
I am a little confused with the results as I see two results.
p210/Abl normalized ratio
Category: Uncategorised

Replies: 1

Last updated: 15 November 2018
American17 on 11 November 2018

Category: Getting help

Replies: 1

Last updated: 15 November 2018

Travel Insurance
by johnw1001 (Nov 15)

Presume you are in UK and if so I have found World First to be willing to cover CML and also most conditions and ages;I was successful in making a claim as well so they do pay out .You will need to

by American17 (Nov 11)

Can anybody recommend a travel insurance company to use for CML
Category: Getting help

Replies: 1

Last updated: 15 November 2018
MartinZA on 12 November 2018

Category: Treating CML

Replies: 2

Last updated: 15 November 2018

Likelihood of adverse events
by MartinZA (Nov 15)

Hi Alastair
Thank you so much for the response - I agree that you are lucky in the UK to have the NHS! (Thanks also for your presentation on the Patient Day - I watched it live here in

by AlastairC (Nov 12)

Hi Martin, a couple of questions. How long have you been in MMR - was losing MMR one of the reasons for your change? Apologies if you have written about that and I've forgotten. Also what dose of

by MartinZA (Nov 12)

Hi everyone
This is a bit of a strange question, and I'm not sure if I should even ask, but any advice would be helpful.
I live in South Africa and am on a private medical aid scheme that has
Category: Treating CML

Replies: 2

Last updated: 15 November 2018
Beulaparthiban on 14 November 2018

Category: Uncategorised

Replies: 3

Last updated: 15 November 2018

My queries about CML
by RC Kirk (Nov 15)

Hello Beulaparthiban,
Welcome to the CML forum.
If you are male, then marrying and having children shouldn't be a problem while you are taking imatinib therapy.
If you are female, then it is a much

by RC Kirk (Nov 15)

Alastair, there is at least one doctor (Samsam) in our forum. But admittedly not a CML doctor.
And to quote the wisdom of Romo,
We are our own doctors.
My Oncologist thinks he’s a genius

by AlastairC (Nov 14)

Hi,
The people on this site are not doctors. We are patients who have had CML and share our experience and knowledge gained over many years for some of us. I hope we can help, but you and your

by Beulaparthiban (Nov 14)

Hello Doctor

1.Can a person with CML( on IMATINIB 400 treatment) is possible to proceed with marriage?

2. How long the tablet should be taken?
Category: Uncategorised

Replies: 3

Last updated: 15 November 2018
David Fitz on 11 November 2018

Category: About CML

Replies: 4

Last updated: 19 November 2018

UPDATE-UCLH web-based consultation study dates have been extended
by AlastairC (Nov 13)

David the link now works fine.

by David Fitz (Nov 13)

Could you try again now?

by MJP (Nov 12)

Denies access

by chrissie (Nov 12)

David, it's refusing me access to the link
Chrissie
Category: About CML

Replies: 4

Last updated: 19 November 2018
pc on 12 November 2018

Category: Other conditions

Replies: 2

Last updated: 12 November 2018

Lymph nodes on left side of neck
by MartinZA (Nov 12)

Hi there
Your message struck a chord with me because I know exactly what it feels like to experience swollen lymph nodes and the terror associated with possible progression to blast phase. For

by cmljax (Nov 12)

Sorry to hear this. Have you had another PDR since the switch to Tasigna - if so, what was the result. What was your blast count on your last blood test and when was this in relation to

by pc (Nov 12)

i switched to tasigna from imatinib, two months backs as my BCR -ABL results were not going below 10% even after six months. Few months back i had observed swollen lymph nodes at right side of
Category: Other conditions

Replies: 2

Last updated: 12 November 2018
AH1 on 9 November 2018

Category: Side effects

Replies: 2

Last updated: 12 November 2018

Gleevec (imanitib) now changed to generic CIPLA
by chrissie (Nov 12)

Ask your haem to prescrobe 4x100mgs daily as the 100mgs are nice and small and easy to swallow. or, as David says, take with a spoonful of yoghurt.
best
Chrissie

by David Fitz (Nov 9)

Generics are the same as the branded medications. Some of the inactive ingredients may be different, which can cause issue with a very small number of people (e.g. someone lactose intolerant when

by AH1 (Nov 9)

Gleevec was recently changed to Sandoz generic imanitib (as Sandoz is owned by Novartis they have the necessary manufacturing capabilities).
Now this has been changed to CIPLA generic. The
Category: Side effects

Replies: 2

Last updated: 12 November 2018