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vonnie on 14 November 2020

Category: Uncategorised

Replies: 2

Last updated: 9 December 2020

fish intolerance
by johnw1001 (Dec 9)

Hi Vonnie,
I dont know how long you have been taking imatinib but in terms of the side effect profile and you can do this by looking at the product literature that accompanies your medicines, it is

by David Fitz (Nov 17)

Vonnie,
Not one I've heard of before - it might be a more mundane situation where the fish was past its best.
David.

by vonnie (Nov 14)

hi two weeks ago ate canned tuna and experienced nausea and loose stools and intestinal discomfort and wondering the next day,yesterday i ate breaded sole and today have suffered the same problems
Category: Uncategorised

Replies: 2

Last updated: 9 December 2020
Chuckster on 9 March 2018

Category: Side effects

Replies: 22

Last updated: 9 December 2020

Initial side Effects of Sprycel?
by ThomasS (Dec 9)

I had terrible side effects on 100mg. Finally talked my dr in to lowering to 50mg and most of the side effects went away. Had bad headaches, leg cramps, terrible insomnia. The insomnia and vivid

by geneletourneau (Dec 5)

I am a 73 year old newbie ti CML myself, having just completed my first 13 days of Sprycel 100 mg. For the first seven or eight days I got some fairly severe headaches that pretty much put me down

by jan0080 (Mar 23)

Chuckster, I started treatment January a year ago. I am a 67 yo guy. About 6 weeks in, I had bad muscle pain that woke me up from my sleep. I had a great response and my

by Toml (Mar 23)

chuck - I've had a few headaches and avoided taking any meds (just trying to tough it out). i'm under the impression that excedrin should be avoided. I will ask my onc during next visit.
Category: Side effects

Replies: 22

Last updated: 9 December 2020
snowman 35 on 6 December 2020

Category: Drug-food interactions

Replies: 4

Last updated: 8 December 2020

Tamarind interacts with TKIs?
by alexmcpee (Dec 8)

Understandable mate we all have our fears. This forum is a god send for sure.
All the best
Al

by snowman 35 (Dec 8)

Thank you both for your replies!! I know I am overacting but sometimes my fear that I will do something wrong doesn't leave me to think clear...

I am really thankful to be in this forum! I

by alexmcpee (Dec 7)

Hey Snowman (very applicable for this time of year haha),
Yeah I wouldnt worry. From what I gather you had an amazing response to treatment. You can't go on scanning everything you eat and drink

by An (Dec 6)

I don't think so ,we are Indians and we put tamarind in lot of our dishes,you should be fine
Category: Drug-food interactions

Replies: 4

Last updated: 8 December 2020
johnw1001 on 2 December 2020

Category: Food & fitness

Replies: 5

Last updated: 3 December 2020

Vitamin D free for vulnerable patients in UK-that is us
by Felix (Dec 3)

It's only a small dose tho of 400 iu that's not enough for us I take 4000 plus Vitamin k 2 .Our NHS is very very stretched regarding funds so I prefer to buy my own.

by David787 (Dec 3)

Thanks for yours John, most interesting. I shall definitely take your advice - being tested for my vitamin D levels at my next check.
David

by David787 (Dec 3)

Thanks for yours John, most interesting. I shall definitely take your advice - being tested for my vitamin D levels at my next check.
David

by alexmcpee (Dec 3)

Brill thanks John,
I too have signed up. Thanks for sharing this I had no idea.
Gotta love our NHS
Alex
Category: Food & fitness

Replies: 5

Last updated: 3 December 2020
benjarvis on 9 November 2020

Category: Uncategorised

Replies: 21

Last updated: 3 December 2020

Newbie and Thank You !
by Roza (Dec 3)

I must say I'm torn between staying on Imatinib and asking to switch at only 6 months in. Yes, the pains can be a nightmare and restricts my love of cycling and long walks etc. but I would

by Nimbus2 (Dec 3)

Patients on these boards report varying side-effects from imatinib. I am far from convinced that supplements will negate these issues. I did suffer very badly from cramps and associated pains. I

by benjarvis (Dec 2)

Good luck hope the pain eases soon

by David787 (Dec 1)

Thanks Ben
Not too bad, thanks...legs and knee joints definitely ready for the Curcumin/tumeric!
Atb
David
Category: Uncategorised

Replies: 21

Last updated: 3 December 2020
alexmcpee on 20 November 2020

Category: Uncategorised

Replies: 33

Last updated: 1 December 2020

MMR finally
by alexmcpee (Dec 1)

That’s very kind. We are all in this together and we get through it together. It’s important to not loose hope if that’s dwindling as it was for me.
Alex

by alexmcpee (Dec 1)

Hey mate,
Thank you! It sure does feel good to hear those MMR words after a pretty long time. I know others have been much longer and are still not MMR I believe for the majority of us it will

by TJ.B (Dec 1)

Hi Alex,
that’s fantastic news, I’m so happy for you ! You are a great contributor to the group .

by ColoradoGuy (Dec 1)

Just saw this post. That is great news! I hope your numbers continue to go down. I made MMR for one lab and then was again just very slightly over again. I think it is a
Category: Uncategorised

Replies: 33

Last updated: 1 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
David on 23 May 2007

Category: Uncategorised

Replies: 7

Last updated: 28 November 2020

Homeopathy
by Naaz (Nov 28)

Pls send me dr details on

nazmeensayed2088@gmail.com

by Naaz (Nov 28)

Hi pls send me the Dr details as well

nazmeensayed2088@gmail.com

by Paul Cooke (May 25)

This is an extract from a recent publication which may be of interest:
A group of leading scientists led by Professor Gustav Born of Kings College London are stepping up their campaign to get the

by David (May 24)

Diana - Thanks for your post. Personal reccommendation is a much better route. Could you send the details to me at david@davidcornes.freeserve.co.uk
Paul - Thanks for your support. It so right that
Category: Uncategorised

Replies: 7

Last updated: 28 November 2020
Tater1 on 25 November 2020

Category: Uncategorised

Replies: 14

Last updated: 28 November 2020

Battling Depression, Trying to stay hopeful and grateful
by kat73 (Nov 28)

Alex - Thanks very much! Tater - Makes me feel good to help. Brantastic - It's possible. I know it was a factor for me on imatinib. The incidence of depression is usually

by Brantastic (Nov 27)

Hia,
I’ve been on dasatinib for about 2 years now. I can’t speak much for results etc, but for me personally I have found that dasatinib has had an effect in general on my mood. I’

by Tater1 (Nov 27)

This means so much to me. Thank you! Feeling understood is like medicine, and I really appreciate you taking the time to respond and relate. I was in a low place a few days ago and

by alexmcpee (Nov 27)

Wow that’s an amazing response I agree 100%... so well put and describes all our fears. Bravo.
Alex
Category: Uncategorised

Replies: 14

Last updated: 28 November 2020
Zzyzxuk on 9 November 2020

Category: Side effects

Replies: 6

Last updated: 28 November 2020

CML Journey: Week 6 - Oh the headaches!!!
by scuba (Nov 28)

First the good news - it will get better. As your body addicts itself (yes, it's an addiction), the headaches lessen. Should only take a few weeks.
During your transition, you can take an NSAID

by Brantastic (Nov 27)

Heya,
When I first started sprycel I had similar issues! Honestly my stomach has not really improved....though I started taking biomel (non-dairy probiotic) and that seems to help somewhat, although

by Reilly9108 (Nov 11)

Very true

by Reilly9108 (Nov 11)

Very true
Category: Side effects

Replies: 6

Last updated: 28 November 2020
sandy craine on 26 November 2020

Category: About CML

Replies: 0

Last updated: 26 November 2020

Keynote presentations from the recipients of the 2020 iCMLf Prizes
by sandy craine (Nov 26)

Keynote presentations from the recipients of the 2020 iCMLf Prizes
At the 22nd John Goldman E-Conference on CML the 2020 iCMLf prize winners have been awarded their prizes. During keynote
Category: About CML

Replies: 0

Last updated: 26 November 2020
geneletourneau on 21 November 2020

Category: Uncategorised

Replies: 9

Last updated: 25 November 2020

New to CML
by geneletourneau (Nov 25)

Hello tater,

Hello tater,

I had only been taking the 100 mg dose for four days. And I needed relief from the headaches, so my doctor told me to take two days off. Tonight I’m

by Tater1 (Nov 25)

Hi Gene,
I’ve been on sprycel for a year now. My dose is lower due to immunosuppression now, but I started in 100 mg, and I can tell you that I will never forget the way I felt those

by Tater1 (Nov 25)

Hi Gene,
I’ve been on sprycel for a year now. My dose is lower due to immunosuppression now, but I started in 100 mg, and I can tell you that I will never forget the way I felt those

by geneletourneau (Nov 25)

Dear Zzyzxuk,
Thank you so VERRY much for your encouragement it helps me to see the light at the end of the tunnel I know it’s not a train. Let me know how you’re doing , I’ll let
Category: Uncategorised

Replies: 9

Last updated: 25 November 2020
sandy craine on 26 July 2020

Category: About CML

Replies: 1

Last updated: 25 November 2020

iCMLf Conversations on CML
by sandy craine (Nov 25)

CML Highlights of ASH 2020 – Biological and clinical overview

We cannot meet in person during ASH so we bring the CML highlights direct to you. Join leading CML experts as they discuss key

by sandy craine (Jul 26)

The iCMLf is hosting conversations on CML and COVID-19 with renowed experts in CML that address key questions on how to manage patients with CML during the COVID-19 pandemic. You can view recordings
Category: About CML

Replies: 1

Last updated: 25 November 2020
GrahamJ on 21 November 2020

Category: Uncategorised

Replies: 2

Last updated: 24 November 2020

Possible good news for a vaccine.
by GrahamJ (Nov 24)

Hi John,
Thanks for the précis, it covers a lot of interesting ground.
I believe that the Oxford/Astra Zenica vaccine is the easier one to distribute because it does not have to be stored at such a

by johnw1001 (Nov 24)

Hi Graham,
Thanks for the interesting posting.Likewise I dont have a strong science background nor a medical one but I have gleaned a few pieces of advice and clarification.
My specialist, who has

by GrahamJ (Nov 21)

BBC news today report , perhaps it will be relevant to CML patients although the technical details are above my pay grade.
Regards,
Graham.

https://www.bbc.co.uk/news/health-55022288
Category: Uncategorised

Replies: 2

Last updated: 24 November 2020
alexmcpee on 22 May 2020

Category: Uncategorised

Replies: 76

Last updated: 23 November 2020

Still no MMR at 24 months Nilotinib
by alexmcpee (Nov 23)

Thank you Faidra. Still smiling 😊

by Faith_05 (Nov 23)

Alex Congratulations!!So happy for you!!
Faidra

by alexmcpee (Nov 22)

Thank you Alastair,
It sure does feel good I’ve not stopped smiling for the past 3 days.
Those pesky plateaus I am sure it won’t be the last. Glad to get over the MMR line finally.
Alex

by AlastairC (Nov 22)

Alex, good to hear this. I plateaued (there are too many consecutive vowels in that word) around 0.5% from 9 months in to 18 months, and then went down to around 0.05% (The number is on a post from
Category: Uncategorised

Replies: 76

Last updated: 23 November 2020
aliensheep0 on 18 November 2020

Category: Blood tests

Replies: 11

Last updated: 21 November 2020

10% increase in BCR-ABL iS%
by chrissie (Nov 21)

My Vit D was very low but don't know exactly how low. My GP prescribed 1000Iu Vit D3 daily which I have been taking for more than one year. I also managed to sit in the sun this summer for the

by aliensheep0 (Nov 20)

I'll have to double up on that vitamin D3 supplement I bought then.

by scuba (Nov 20)

22 is very low. When I tested that low, I took 10,000 IU's every day for 3 weeks. That barely put me above 50 ng/ml. I now alternate 5,000 one day, 10,000 the next (in winter) and hover around

by aliensheep0 (Nov 20)

My vitamin D is a little low, at 22. So I started taking a vitamin D supplement at 5000iu 2 days ago. my regular multivitamin already includes 2000iu
Category: Blood tests

Replies: 11

Last updated: 21 November 2020
David787 on 18 November 2020

Category: Drug-drug interactions

Replies: 14

Last updated: 20 November 2020

Ibuprofen
by David787 (Nov 20)

I had never heard of Zapain until now, I shall get some! Thanks Denise
Best
David

by David787 (Nov 20)

This is the Tumeric you bought with the black pepper, Ben?
Best
David

by benjarvis (Nov 20)

I bought a high strength one off amazon it must include black pepper has helps with absorption.
its has really helped me.
cheers Ben

by Felix (Nov 20)

Hi, I take Zapain for back pain ,think it's Paracetamol and codeine works an absolute treat for me .I only take it when I really need to so I have never become addicted to it .It can make you
Category: Drug-drug interactions

Replies: 14

Last updated: 20 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
sandy craine on 16 November 2020

Category: Blood tests

Replies: 2

Last updated: 18 November 2020

Vit D3 levels/measurement
by scuba (Nov 18)

Hi John,
I maintain my vitamin D level around 170 nmol/L. - which is equivalent to 70 ng/ml.
60 nmol/L is insufficient for viral and cancer protection. Here is a handy conversion tool:

http://

by johnw1001 (Nov 18)

Hi Sandy,
Thanks for posting this;it is very useful and perhaps very timely as winter is approaching and we have much less UV light to take in outdoors.
At the beginning of the year I was found to

by sandy craine (Nov 16)

Some useful information here on different measurements used for assessing D3 status. Understanding the difference between nmol/L and ng/ml is important... see the link below for a conversation
Category: Blood tests

Replies: 2

Last updated: 18 November 2020
alexmcpee on 16 November 2020

Category: Uncategorised

Replies: 4

Last updated: 18 November 2020

Bleeding gums (night only)
by alexmcpee (Nov 18)

Hi John
Thanks for your reply. I am in the UK so will check out your recommendation for gum shields and the mouth wash. I am sure I am clenching my jaw at night so could well be this. PCR results on

by johnw1001 (Nov 17)

Hi Alex,
I have issues with grinding of teeth to the extent that some of my front lower ones are chipped and ground off -I suppose that I could have a few crowns put in but so far have not gone down

by alexmcpee (Nov 17)

Hey Sandy
I do grind my teeth for sure and I am certain I also clench my jaw while I sleep. That plus the fact I often “suck” my teeth. I just got a little worried it was CML/TKI related

by sandy craine (Nov 17)

Hi Alex,
it does seem strange that it is only your back molars/wisdom teethe have the problem. Other than making sure you adequately clean and massage all of your gums - a little harder to do that
Category: Uncategorised

Replies: 4

Last updated: 18 November 2020