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vonnie on 13 November 2017

Category: Uncategorised

Replies: 1

Last updated: 21 November 2017

Spasm pain
by David Fitz (Nov 21)

Hi Vonnie,
Many of us have had sharp pain on TKIs. It's hard to know what to do about it though. Does anything bring it on? Exercise maybe, or standing from a previous sedentary state?
David.

by vonnie (Nov 13)

Hi moving on from the post bone marrow pain i was getting in my right side buttock i know find after a leisurely walk of about an half hour then coming home and using the hoover for a short while i
Category: Uncategorised

Replies: 1

Last updated: 21 November 2017
Amit on 14 October 2017

Category: Uncategorised

Replies: 1

Last updated: 21 November 2017

Stem Cell Treatment
by David Fitz (Nov 21)

I'd be surprised if it did - and as I understand it there is no research into this as you child has a genetic mix of you and your partner so matching is not simple.
CML is genetic, but not

by Amit (Oct 14)

Dear All:
Does anyone have any idea if stem cell therapy from your newly born child either before or after you have been diagnosed with CML works ? Does anyone have any information on this as i
Category: Uncategorised

Replies: 1

Last updated: 21 November 2017
Basil from RSA on 14 November 2017

Category: Uncategorised

Replies: 4

Last updated: 21 November 2017

Hi From South Africa
by Basil from RSA (Nov 21)

Make sure that you give yourself enough time in PCRU. The good thing is that there is ongoing research to try to identify CML candidates who may have a better chance of staying in TFR. Good lick for

by Basil from RSA (Nov 21)

Thanks for the recognition. I really do wish it was as easy for all CML patients to achieve Treatment Free Remission, and retain the status for many years. But that is the goal of many Researchers

by AlastairC (Nov 16)

Basil, great to read your post. At 60, and after 10+ years on imatinib, I have started on a reduced dose with a view to stopping (blood tests permitting) in a year's time. If successful, I will be

by Olivia (Nov 15)

Basil, thank you for this wonderfully encouraging post! We may not all get to where you are, but it does give us hope. That is so very important. Congratulations
Olivia
Category: Uncategorised

Replies: 4

Last updated: 21 November 2017
ColoradoGuy on 17 November 2017

Category: Blood tests

Replies: 2

Last updated: 21 November 2017

Low WBC?
by Tbrand (Nov 21)

Hello Colorado Guy, I’m from there also. Anyhow, 30 days after diagnosis, on Gleevec, my WBC count went from 94,000 to 1000. It stayed low for about 3 months and I was put on an antibiotic during

by David Fitz (Nov 17)

Hi there, and welcome!
Dasatinib can be myelosuppressive which means it can decrease bone marrow activity a bit, resulting in fewer red blood cells, white blood cells, and platelets.
I too

by ColoradoGuy (Nov 17)

Hello all and thank you for all of your posts and information that is available on this site. I wad diagnosed three months ago with a WBC of 258 (age 37). I am taking Dasatinib 100mg and
Category: Blood tests

Replies: 2

Last updated: 21 November 2017
alanmc on 20 October 2017

Category: Side effects

Replies: 4

Last updated: 20 November 2017

Blood clots in my fingers
by chrissie (Nov 20)

A black finger which throbbed for about 3 weeks is how I got diagnosed 8+yrs ago as my GP asked for a full blood count. I still get a bruised finger - not always the same one - for what reason I don

by AlastairC (Oct 23)

Hi. I'm not sure I'd say the issues with your fingers are probably not Glivec related, but I'd certainly get any alternative causes checked. Always wary of an assumption that something is due to a

by alanmc (Oct 22)

Hi Alastair,

Thanks for your reply. So these vein issues are probably not related to Glivec then. I'll definitely have a chat with my haematologist about serum levels in my blood. Even though

by AlastairC (Oct 21)

Alan, your symptoms in your fingers are not one I've heard before, and after 10 years on Glivec/Imatinib and being active on this site for a lot of that time I've heard of most of what it can throw
Category: Side effects

Replies: 4

Last updated: 20 November 2017
Dharmesh Mehta on 16 November 2017

Category: Drug-food interactions

Replies: 4

Last updated: 20 November 2017

Imatinib & Alcohol
by Mike2584 (Nov 20)

Hi everyone,
I’m from France. My hematologist does not worry about liver issues as long as my alcohol consumption is not regular but he told me that TKI’s could be inhibited by regular and

by Dharmesh Mehta (Nov 17)

Thanks guys, I purposely avoided drinking for the first few weeks to give the treatment a chance to work and make sure that there were no major side effects from it. Whilst I don't intend on going

by AlastairC (Nov 16)

Dharmesh, for the 10+ years I have been on imatinib I have kept to the UK guidelines for alcohol consumption - no more than 14 units/week and at least three days per week with no alcohol at all. I'

by David Fitz (Nov 16)

From personal experience, the medication never affected the taste of anything for me. For you, I guess there's an easy way to find out!
Alcohol and imatinib (or other TKIs) is fine so long as your
Category: Drug-food interactions

Replies: 4

Last updated: 20 November 2017
sandy craine on 11 November 2017

Category: About CML

Replies: 0

Last updated: 11 November 2017

Interview with Prof. Jane Apperley - 2010 but still very relevant.
by sandy craine (Nov 11)

http://www.practiceupdate.com/content/cml-the-changing-landscape-of-fron...
Category: About CML

Replies: 0

Last updated: 11 November 2017
EvaH on 10 November 2017

Category: Uncategorised

Replies: 0

Last updated: 10 November 2017

Anyone experienced with giving themselves B12 injections?
by EvaH (Nov 10)

I want to do it myself but the needle looks huge.
And what about sites? My thigh muscle is the easier option but its sensitive even to strong massage, I dont think my arm is big enough :-o
Category: Uncategorised

Replies: 0

Last updated: 10 November 2017
EvaH on 9 November 2017

Category: About CML

Replies: 0

Last updated: 9 November 2017

New research on aml/CML from Switzerland
by EvaH (Nov 9)

Can't remember if I shared this before but just in case
https://actu.epfl.ch/news/new-study-into-leukemia-offers-clearer-underst...
Category: About CML

Replies: 0

Last updated: 9 November 2017
Brooks Ross on 4 November 2017

Category: Uncategorised

Replies: 1

Last updated: 7 November 2017

Tasigna - Medical Denied by FAA
by David Fitz (Nov 7)

Hi,
It seems that nilotinib is not allowed by the FAA. However dasatinib may be with some hoop-jumping.
https://www.aviationmedicine.com/medication-database/?amas_search_term=d...
Would you consider

by Brooks Ross (Nov 4)

Hello
I was recently denied my medical on account of taking Tasigna so I'm now putting together a comprehensive package as part of a review/appeal. In speaking with the local FAA Surgeon, who
Category: Uncategorised

Replies: 1

Last updated: 7 November 2017
JacqJohn on 6 November 2017

Category: Uncategorised

Replies: 1

Last updated: 7 November 2017

Side Effects from Tasigna--> change to Gleevec
by David Fitz (Nov 7)

Hi John,
"Better" is very subjective. If Tasigna / nilotinib is damaging your liver, it's certainly not better for you than Glivec / imatinib!
The jury is still out on which drugs are better. There

by JacqJohn (Nov 6)

Hi All,
just started Tasigna for 2.5days (3weeks after first diagnosed) and I experienced some mild obdominal pain as well as very horrible muscle pain from the backside to the leg, radiating
Category: Uncategorised

Replies: 1

Last updated: 7 November 2017
Firas Roustom on 5 November 2017

Category: Side effects

Replies: 1

Last updated: 7 November 2017

fever
by David Fitz (Nov 7)

I haven't heard of imatinib causing a high fever in an individual, but fever is listed as a potential side-effect of imatinib. I am not sure if this side effect is meant directly, or because

by Firas Roustom (Nov 5)

My father 79 years old was diagnosed with CML ph+ before three months.his white blood cell count was 126000, he took hydria to decrease the white blood cell count and after one month the white blood
Category: Side effects

Replies: 1

Last updated: 7 November 2017
Deb Cruz on 5 October 2017

Category: Getting help

Replies: 3

Last updated: 5 November 2017

Veenat imatinib 100mg
by rosegrace (Nov 5)

Hi Deb,
Where are you from? Maybe I can help if you're in the Philippines. I too couldn't afford the expensive Gleevec that's why I'm currently taking veenat

by Deb Cruz (Oct 5)

Thank you for the response...

by chrissie (Oct 5)

Hi Deb
I suggest you join the International Facebook page "Journey to a Cure" (It's a closed group so no one can see your posts unless they are a member)as many of the CMLers on there will be from

by Deb Cruz (Oct 5)

Good day, i was diagnosed last aug 2017, i am hoping someone can help me to find supplier of veenat since i cannot afford the glivec.....thank you....
Category: Getting help

Replies: 3

Last updated: 5 November 2017
Jazzes on 3 November 2017

Category: Uncategorised

Replies: 1

Last updated: 5 November 2017

Does Gleevec dosages ever change?
by David Fitz (Nov 5)

That's a very high dose. "High dose" imatinib is usually considered 600mg, and the standard dose is 400mg.
Do you know why you were placed on 800mg? How long have you been on that dose, and when

by Jazzes (Nov 3)

Presently on 400 mg Gleevec twice a day... does this ever change to one a day?
Category: Uncategorised

Replies: 1

Last updated: 5 November 2017
Mxo24 on 2 July 2015

Category: Organising your life

Replies: 3

Last updated: 4 November 2017

Help with FAA
by Brooks Ross (Nov 4)

Hello
I was recently denied my medical on account of taking Tasigna so I'm now putting together a comprehensive package as part of a review/appeal. In speaking with the local FAA Surgeon, who

by AnthonyI (Jul 6)

Maybe talk with an aviation attorney that can maybe help you get your medical. My brother is an aviation attorney and his website is .......... There are a lot of good aviation attorneys out there

by sandy craine (Jul 3)

Hi, although I can't give direct advice on this there has been other conversations by other members on this very subject- see the link to that thread below. Congratulations on overcoming both

by Mxo24 (Jul 2)

Hi there, I was wondering if anyone can help in a situation I'm in with the FAA and with some questions. My dream is to do commercial flying and work with aircrafts. However, in 2007 I was
Category: Organising your life

Replies: 3

Last updated: 4 November 2017
sandy craine on 5 July 2012

Category: Uncategorised

Replies: 8

Last updated: 3 November 2017

ibuprofen (Neurofen) contra-indicated with imatinib.
by Richard42 (Nov 3)

Its interesting that there may be a very good reason to avoid ibuprofen with imatinib. When I was first diagnosed and treated I had the cramps and bone pain that we all seem to get. My

by AlastairC (Oct 30)

Matt, I had some joint and bone pain when I started taking imatinib (over 10 years ago). It did die down over 3-4 months. I have used both ibuprofen and paracetamol occasionally over the last 0

by Olivia (Oct 30)

Going back to a slightly earlier part of this thread, I went to my GP with sciatica a bit over a year ago. Apart from pain-killers, she suggested that the best treatments were likely to be

by Matt McBrayer (Oct 29)

I know this is an older post, but thought it worth stating that, when I linked to a more detailed report of the study, Naproxen was one of the NSAIDs included in the experiment. However, it did not
Category: Uncategorised

Replies: 8

Last updated: 3 November 2017
K Rivera on 2 November 2017

Category: Side effects

Replies: 2

Last updated: 2 November 2017

Help dealing with CML Sprycel medication side effects! Diarrhea (sorry for tmi)
by David Fitz (Nov 2)

That sounds terrible. Dasatinib isn't massively associatd with diarrhoea - it's usually bosutinib that causes that. However your husband wouldn't be the first to experience bowel problems on

by alliswell (Nov 2)

sorry to hear about side effects that your husband having .
during my mothers diagnosis period , not cml but use of gleevec ( imatinib) and its side effect scared me most . espically pain but

by K Rivera (Nov 2)

Hello, I am writing here on behalf of my husband. He is only 26 but last week we found out he has CML and he was put on Dasinitab (Sprycel).. Ever since he has horrible diarrhea and cannot keep his
Category: Side effects

Replies: 2

Last updated: 2 November 2017
dadbags on 31 October 2017

Category: About CML

Replies: 1

Last updated: 2 November 2017

decreased dosage
by sandy craine (Nov 2)

Good news Steven,
Thanks for updating this forum.
Sandy

by dadbags (Oct 31)

well like i said before dr changed dosage from 600mm to 200mm its been a year now----still 5600 wbc--all functions liver,kidney etc normal and the best for last NO LONGER ANEMIC----i passed 16years
Category: About CML

Replies: 1

Last updated: 2 November 2017
starente on 24 October 2017

Category: Treating CML

Replies: 4

Last updated: 2 November 2017

New to this with questions
by starente (Nov 2)

Very helpful. Thanks again for your insight!

by David Fitz (Oct 31)

The pain onset pretty quickly, within a week of taking it I remember. It was pretty sudden. For me, it was focused on my legs and arms - particularly the upper half of my legs. It totally nailed me

by starente (Oct 27)

Thank you so much David! A few additional questions if you have time.

How long after starting imatinib did you start experiencing pain?
Was the onset of pain sudden?
Did the pain move

by David Fitz (Oct 27)

Hi there,
Some patients do find dasatinib / Sprycel is hard on their joints. Of course, as we all get older I suppose joint problems are more frequent! However, it this has onset suddenly and is
Category: Treating CML

Replies: 4

Last updated: 2 November 2017
JacqJohn on 28 October 2017

Category: Organising your life

Replies: 1

Last updated: 31 October 2017

Advice prior to start of TKI
by David Fitz (Oct 31)

Hi again,
I know it's frustrating, but the TKIs do all the heavy-lifting in terms of fighting CML. Wouldn't it be great if we knew that eating this or that, and exercising so much would push back

by JacqJohn (Oct 28)

Hi everyone,
My husband will be starting with TKI nilotinib next week. I've been reading about a lot of side effects of this medication. Also I got to know that one of my friends mom recently passed
Category: Organising your life

Replies: 1

Last updated: 31 October 2017