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Carol on 24 February 2019

Category: Uncategorised

Replies: 3

Last updated: 10 July 2019

Hammersmith CML Support Group Meeting at Hammersmith Hospital Saturday 18th May 2019
by labros (Jul 10)

Hello Carol,
Thank you very much for the information. Unfortunately, I will be out of UK till 17th of September, therefore I will probably join the one after.
If you already have the dates, it would

by Carol (Jul 9)

Hi
Sorry to hear you’ve been dx with cml

the next meeting ting at the Hammersmith is on Saturday 7 th September 2019. Would you like to reserve a space/s. Your very welcome

by labros (Jul 9)

Hello Carol,
Do you know, when and if it's going to be another meeting for 2019. I've recently diagnosed with CML and I would be really interested.
Thanks.

by Carol (Feb 24)

Hammersmith CML Patient/Carer Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME
CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 OHS.(rear of hospital)
The
Category: Uncategorised

Replies: 3

Last updated: 10 July 2019
lupus on 1 July 2019

Category: Blood tests

Replies: 3

Last updated: 8 July 2019

Myeloblasts aberrantly express CD7 mark meaning?
by RC Kirk (Jul 8)

I thought I'd post the response Tomas got on the LLS CML group in case anyone else was interested.
https://communityview.lls.org/statuses/6302
"You only know that because a Flow Cytometry

by lupus (Jul 7)

Hi Kirk,
thanks for your answer and support. Thanks also for that link, I´ll appreciate it and will definitely ask there.
I am worried because I have read some papers (there are only few in

by RC Kirk (Jul 3)

Hi Tomas,
I doubt that it means anything about your prognosis. Our blood is usually pretty messed up when we're diagnosed. Hopefully you'll have a good response with Tasigna and

by lupus (Jul 1)

Hello everybody,
I have been diagnosed three weeks ago with early CP of CML and I am currently on Tasigna 300 mg/day for a week.

Can somebody please help me to understand what is the meaning
Category: Blood tests

Replies: 3

Last updated: 8 July 2019
Paula Pavani Ac... on 1 July 2019

Category: Uncategorised

Replies: 12

Last updated: 8 July 2019

Healing CML ?
by Sarah63 (Jul 8)

I just started 20 mg Sprycel, having educated my hemotologist (I gave him Scuba’s study) along with some good ole’ assertive standing up for myself. He argued with me for months. He

by AlastairC (Jul 4)

Paula, I suggest you show your consultant this article This only shows that summary - he/she will likely be able to access to the full article. If the consultant you are seeing is a

by hannibellemo (Jul 4)

Paula,
I hope you feel more confident after your post. I have been taking Sprycel for almost 10 years. I started at 100mg and developed a pleural effusion after 2.5 years. (Hopefully avoiding a

by scuba (Jul 4)

He is heading up Georgia Cancer center in USA beginning this fall.
Category: Uncategorised

Replies: 12

Last updated: 8 July 2019
alexmcpee on 4 July 2019

Category: Uncategorised

Replies: 4

Last updated: 6 July 2019

CML patient group 24th July kings
by alexmcpee (Jul 6)

Great! Would be awesome to meet you. Hopefully see you there David.
Take care
Alex 😀

by David Fitz (Jul 6)

Actually I’ve just realised it’s on a Wednesday, which is my non-working day (4 day week) so I just might make it.

by alexmcpee (Jul 4)

That’s a shame David would have been nice to meet you! Another time maybe. Hope all is good with you.
Alex

by David Fitz (Jul 4)

I would love to go, but won't be able to unfortunately. I'm told that the agenda point around clinical trials will be really interesting - so if you do go to this I'd be really
Category: Uncategorised

Replies: 4

Last updated: 6 July 2019
Andy on 4 July 2019

Category: Treating CML

Replies: 3

Last updated: 6 July 2019

Side effect - Pain
by johnw1001 (Jul 6)

Hi Andy,
As a a long term CML patient of over 13 years and always having been on the branded Glivec I have lots of experience of musculoskeletal issues as side effects and very much emerging

by sandy craine (Jul 5)

Hi Andy,
You could try supplementing with magnesium (muscle cramps etc) to see if that helps. Mag Citrate is one of the more bio-available forms and you can also try a topical magnesium oil to see

by AlastairC (Jul 5)

Hi Andy, sorry to hear this and it does sound a bit unusual. With imatinib bone and joint pain is a common side effect when you start the medication, but for most people it gets much easier in the

by Andy (Jul 4)

Hi,
I have been on imatinib for 2 years now. And i started to have sharp pain for last 2 weeks on tendons and ligaments where there are strain while walking / running or playing. Now the pain
Category: Treating CML

Replies: 3

Last updated: 6 July 2019
catz555 on 2 July 2019

Category: Uncategorised

Replies: 13

Last updated: 6 July 2019

0.015 after a month on Sprycel.comments?
by catz555 (Jul 6)

Wow,so much to learn and know about this illness...grateful for everyone’s Input as would never have known bout the effectiveness of 50mg Sprycel and taking tumeric and magnesium etc...Yes I

by scuba (Jul 5)

I have been thinking a lot about patients who have excellent response only to lose it quickly when they stop treatment. I have a working theory that this is due to large quantities of CML stem cells

by kat73 (Jul 5)

My doc does not recommend stopping for me unless and until I have a couple of years of consistent undetectables. He feels that if there is any detectability, there is the potential for

by catz555 (Jul 4)

Wow,thanks for that Kat,sorta get it better now!Your results are great and that is awesome!Will you try go off Sprycel soon?
Category: Uncategorised

Replies: 13

Last updated: 6 July 2019
Ontasigna on 5 July 2019

Category: Treating CML

Replies: 4

Last updated: 5 July 2019

Is it safe to take K2 with D3 when on Nilotnib
by scuba (Jul 5)

Key is to avoid sunburns. Sunburning is what can lead to skin cancer. Tanning is the body's way of protecting against sun burns. Studies on vitamin D protecting against skin cancer are mixed.

by Karinne (Jul 5)

On 100mg Sprycel I could not tan either. But on 50mg, I had no problem. Not that it matters (tan or no tan) but I thought that it was weird and even dangerous. People reported more skin cancer

by scuba (Jul 5)

Interestingly .... I found that when I was on Gleevec initially at diagnosis, I could not develop a tan. When I switched to sprycel and especially very low dose sprycel, I was able to tan again. I

by cmljax (Jul 5)

I take 4,000 iu's per day of D3 and have my blood levels checked every 6 months - most recent level was 63 and I'm pretty happy with that. Herre's what I take:
https://www.vitacost
Category: Treating CML

Replies: 4

Last updated: 5 July 2019
ckquinn on 4 July 2019

Category: Side effects

Replies: 2

Last updated: 4 July 2019

Dasatinib reduction
by ckquinn (Jul 4)

Thanks Karinne, this gives me great encouragement, maybe I'm a bit ambitious to go treatment free, but a reduction of dose and side effects would be great.

Keep well

K

by Karinne (Jul 4)

Welcome to the club!!! I was on Sprycel 100mg for 4 years and then I went to 50mg and my pcr settled to the same level quickly. They happened to change the sensitivity of the test in the same time.

by ckquinn (Jul 4)

Well after over 4 years since diagnosis, 3 of which in MMR, I have this week started a 50% reduction of Dasatinib to 50mg.

I'm a bit anxious and would be interested in others experiences
Category: Side effects

Replies: 2

Last updated: 4 July 2019
Stuart Johnston on 12 June 2019

Category: Side effects

Replies: 5

Last updated: 3 July 2019

Generic Imatinib side effects (WOCKHARDT BIO AG)
by Nimbus2 (Jul 3)

There is a view floating around that there is no difference between branded and generic imatinib, i.e. they are medically identical in all respects. I think that few would challenge that the

by Helen (Jul 3)

Hello, Very interested reading this as I was on generic Imatinib for about 18 months before I realised the aches and pains in pelvis/legs might be because of these generic tablets. Had

by Stuart Johnston (Jul 1)

hi thanks for the reply.
I have been on Glivec Novartis imatinib since 2008 never had any issues other than the usual associated side effects i.e. Cramps fatigue and diarrhoea. All of

by TJD (Jul 1)

Hi Stuart
I actually did the clinical trials for Imatinib in 2001,as such I had to fill in a daily diary ,the o my really bad side effect I.had was severe muscle cramps in my legs and hands.I do
Category: Side effects

Replies: 5

Last updated: 3 July 2019
s4stwill on 2 July 2019

Category: Uncategorised

Replies: 1

Last updated: 3 July 2019

Advice on stopping Dasatinib (Sprycel)
by RC Kirk (Jul 3)

I do think that TKIs affect the skin and its healing. Since you have two opinions from the doctors, I'd go with the one that seemed best to me.
I take 20 mg Sprycel per day and my BCR-ABL1

by s4stwill (Jul 2)

Dear All,
My boyfriend has been diagnosed wth CML in 2013. He commenced on Sprycel, which he's still taking to this day (100 mcg) and even made his CML non-detectable. Now, his BCR-ABL levels
Category: Uncategorised

Replies: 1

Last updated: 3 July 2019
Diane CW on 13 June 2019

Category: Side effects

Replies: 8

Last updated: 2 July 2019

Bosutinib and BCR-ABL Issues
by onekayaker (Jul 2)

Oh sorry forgot to answer your other question, yes I am in bosutinib as well. My counts on ALT go from 17-57 depending on diet. My doctor at MD Anderson was a thumbs up on the milk

by onekayaker (Jul 2)

So she thinks she is getting a “true” reading with you on steroids??? I’m not s Doctor, nor have I played one on TV, but really? Long term use of steroids are not the

by hannibellemo (Jun 30)

Diane, I took Gleevec for 9 months back in 2009. My liver enzyme counts went sky high very quickly, ALT 1500 and AST 1300. I was switched to dasatinib without a blip. I had other side effects but no

by Diane CW (Jun 29)

After reading about milk thistle on this forum I mentioned it to my onc but she said she would rather I didn’t try it because it would not give a true reading of my liver function, so I haven
Category: Side effects

Replies: 8

Last updated: 2 July 2019
Olivia on 2 July 2019

Category: Side effects

Replies: 0

Last updated: 2 July 2019

Gender differences in drug efficacy
by Olivia (Jul 2)

I have been reading a newspaper article, which highlights how many drugs work well for men, but less well for women (or the other way round). Does anyone know of any research into whether TKIs
Category: Side effects

Replies: 0

Last updated: 2 July 2019
Felix on 30 June 2019

Category: Side effects

Replies: 7

Last updated: 1 July 2019

Dasatinib any eye or pain problems
by David Fitz (Jul 1)

Your body your rules, as far as I’m concerned. I’ve had that discussion with my doctor a few times - she’s fab, probably at the more cautious end of the spectrum but fully respects

by Felix (Jul 1)

Hi David, on Scubas recommendation I am taking 50 mg ,my Doc and Consultant don't agree with me taking this lower dose of course they say 100 mg but I decided on lower dose cos it's my body

by David Fitz (Jul 1)

That is a good low number, heading down to MR4 soon - hopefully.
Assuming you are taking 100mg of dasastinib, perhaps you could discuss a dose reduction with your doctor. Scuba has explained many

by Felix (Jun 30)

Last one was 0.04 6 weeks ago had a test this week so hoping it's gone down a bit more .
Category: Side effects

Replies: 7

Last updated: 1 July 2019
Jerry123 on 25 June 2019

Category: Uncategorised

Replies: 4

Last updated: 30 June 2019

Diagnosed with CML
by Jerry123 (Jun 30)

Hi, I will mention this drug to my oncologist and see if this maybe another alternative if in fact the sprycel is the culprit.
Take care. Jerry

by Krimmy17 (Jun 28)

Just wanted to say good luck! I also am being treated for CML with Roswell though I am on gleevec and have not had any issues with my taste and smell. Hopefully they will come back soon!

by Jerry123 (Jun 25)

Hi David, thanks for the article apparently they don't really no what's causing smell and taste issues yet. This started 3 days after I started taking the sprycel. When I get up in the morning I

by David Fitz (Jun 25)

Hi Jerry,
I think there could be a few factors at play here. A CML diagnosis is a big thing to take in, and often people find that they least their appetite and just feel off their for for a while.
Category: Uncategorised

Replies: 4

Last updated: 30 June 2019
Jadey on 28 June 2019

Category: Uncategorised

Replies: 3

Last updated: 29 June 2019

Slight increase in bar abl in MMR
by chrissie (Jun 29)

The lower our PCRs fall the more they bounce around (think of looking for needles in a haystack!). If there is an upward trend of more than 3 tests, then levels may be starting to rise - but not

by kat73 (Jun 28)

Jade - Yes, we've all had such changes. It could be a blip, but more probably, the 0.004 was the anomaly and you really are settling in around 0.01 for the time being. That is a

by onekayaker (Jun 28)

Jade same thing here. Just had a blood draw today. I went to .0595% in a month and a half while taking just 300mg of bosulif and fully expected to me at MR4 a month ago. Instead I

by Jadey (Jun 28)

Hi does anyone know if it’s normal to have a slight increase in BCR ABL when in MMR my results dropped from 0.37 (then started Nilotinib from Imatinib) to 0.02 to 0.01 to 0.004 and then rose
Category: Uncategorised

Replies: 3

Last updated: 29 June 2019
Damian Gabilondo on 27 June 2019

Category: Uncategorised

Replies: 3

Last updated: 28 June 2019

PCR 12 Months
by onekayaker (Jun 28)

Awesome for you!!

Steff

by ColoradoGuy (Jun 28)

Congratulations on your response. I believe you can safely say that reducing your dose is in order. If I'm not mistaken the recommended starting dose is 400mg so at a minimum you can

by scuba (Jun 27)

Yes - you are a perfect candidate for dose reduction.
Your PCR level has dropped in one year of treatment to statistically "undetected" (i.e. PCR < 0.01%). Third and fourth decimal

by Damian Gabilondo (Jun 27)

Hello everyone, I pass the report of 12 months of treatment with Tasigna 600 daily.
03/13/2018 PCR 58 IS DX
08/21/2018 PCR 0.028 IS
04/02/2019 PCR 0.022 IS
06/06/2019 PCR 0.0098
Category: Uncategorised

Replies: 3

Last updated: 28 June 2019
jmonzione on 13 June 2019

Category: Side effects

Replies: 4

Last updated: 27 June 2019

Sprycel and pain/discomfort/fatigue
by Chuckster (Jun 27)

Thanks!
Chuck.

by onekayaker (Jun 25)

Awesome Chuckie!

Steff

by Chuckster (Jun 25)

Going back on meds after being off of the 50 MG daily of Sprycel since May 24th.
I got my oncologist to agree with lowering the dosage of Sprycel to 20 MG Daily!
Starting the new dosage beginning

by Chuckster (Jun 16)

Hope you can get down to at least 50 MG !
CML confirmed Feb 2018.
I lasted not even 3 weeks on the 100 mg with side effects of real bad shortness of breath, fatigue, and loss of appetite.
Reduced
Category: Side effects

Replies: 4

Last updated: 27 June 2019
ColoradoGuy on 26 June 2019

Category: Blood tests

Replies: 0

Last updated: 26 June 2019

21 Month PCR Update Sprycel to Nilotinib
by ColoradoGuy (Jun 26)

I wanted to update everybody on my PCR results after switching from Dasatinib to Nilotinib. I can no longer log on using my Google account for some reason so there are other threads under my
Category: Blood tests

Replies: 0

Last updated: 26 June 2019
Liamsdad on 25 June 2019

Category: Uncategorised

Replies: 4

Last updated: 25 June 2019

Stem cell transplant
by Liamsdad (Jun 25)

Thanks, I was already in 20 mg of Sprycel and was admitted to ER twice.

by scuba (Jun 25)

Consider returning to sprycel low dose no more than 20 mg.
It will likely be more effective than 300 mg gleevec and you may avoid side effects that you can feel at that dose.
It is much more

by Liamsdad (Jun 25)

PCR 1.2

Gleevec- gastro, skin, bleeding, fatigue weight loss

Sprycel - chest pains, dizziness, gastro, pleurisy,

Tasigna - enzyme issues, anemia, numbness in legs

Bosulif -

by scuba (Jun 25)

What were the side effects you were experiencing?
What is your current status (PCR/ blood counts)
Category: Uncategorised

Replies: 4

Last updated: 25 June 2019
Tanya Cuffe on 11 June 2019

Category: Uncategorised

Replies: 1

Last updated: 25 June 2019

Melatonin and other sleeping aids?
by johnw1001 (Jun 25)

Hi Tanya,
I have taken melatonin before to counteract jet lag only.Apparently it is taken for a range of conditions in the medical field but whether it works or not is to be queried.My search

by Tanya Cuffe (Jun 11)

Hi all! Sleep question.Sleep is a problem so am taking Melatonin and an antihistamine otc sleep aid.Are these ok to take with our disease and on Sprycel?Also just wanted to add am feeling better on
Category: Uncategorised

Replies: 1

Last updated: 25 June 2019