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Ontasigna on 15 July 2019

Category: Treating CML

Replies: 4

Last updated: 17 July 2019

Need Help : Feeling cold all the time
by scuba (Jul 17)

Have your thyroid checked and verify TSH, T4, T3 levels (total and free) are normal.
TKI's can impact the thyroid especially during TKI withdrawal (treatment free remission). It did mine

by Tanya Cuffe (Jul 17)

I have had chills pre diagnosis and also now still.It is most unpleasant however I believe it is just one of the symptoms of CML and can also continue on meds.I find it’s just something I

by Ontasigna (Jul 17)

Have chills sometimes. Feel cold most of the times

by alexmcpee (Jul 15)

Hi there,
I am on Tasigna for 15 months not at MMR yet I defo feel the cold more than I used to. When you say chills do you mean you sometimes have the shakes?
Alex
Category: Treating CML

Replies: 4

Last updated: 17 July 2019
Ontasigna on 12 July 2019

Category: Treating CML

Replies: 6

Last updated: 17 July 2019

Nilotnib & Electrolyte
by David Fitz (Jul 17)

Check with your doctor if you're at all concerned, but its hard to see a problem with that.

by Ontasigna (Jul 17)

occasionally. Probably once in 2 months for re-hydration.

by David Fitz (Jul 16)

Are you talking about taking them occasionally, to keep hydrated through a bout of diarrhea or something? Or more habitual usage?

by Ontasigna (Jul 16)

Yes. Like Dioralyte. I read somewhere "sodium citrate" in Dioralyte reduce Nilotnib absorption? Is that true?
Category: Treating CML

Replies: 6

Last updated: 17 July 2019
Chuckster on 14 July 2019

Category: Side effects

Replies: 4

Last updated: 16 July 2019

Thoracentesis: What to expect.
by Chuckster (Jul 16)

Thanks and all the best to you also!

by Mick E (Jul 16)

Thanks for the reply Chuck
i started 100mg a couple of weeks ago and experiencing exactly the same problems. Had chest x Ray today to check for fluid. Pleased to hear you are doing well

by Chuckster (Jul 16)

Hi,
My dosage has been lowered from 100mg to 80 mg to 50mg and just recently to 20mg.
This is all over a span of approx 1 and a half years.
CML was confirmed on FEB 12, 2018 till present.

by Mick E (Jul 16)

Hello Chuck
cannot offer any advice on the procedure to drain your chest but I’m interested to know why you were dropped to 20mg dosage of sprycell?
i recently started taking 100mg but that
Category: Side effects

Replies: 4

Last updated: 16 July 2019
vonnie on 10 July 2019

Category: Uncategorised

Replies: 3

Last updated: 16 July 2019

nausea
by vonnie (Jul 16)

Hi thanks all for your support it's not so bad this week cheers

by Mick E (Jul 16)

I used to go for a steady ride on the pushbike about an hour after taking meds, found that that just about stopped the feeling of nausea.

by alexmcpee (Jul 15)

I have felt this before, if I am anxious I tend to feel it too. Sometimes we put all down to CML when it could well be anxiety. When I am not anxious no nausea.
Alex

by vonnie (Jul 10)

hi i havent been on for a while but i seem to be feeling nausea most mornings for about an hour is this common thanks in advance
Category: Uncategorised

Replies: 3

Last updated: 16 July 2019
Nimbus2 on 15 July 2019

Category: Treating CML

Replies: 1

Last updated: 15 July 2019

Diagnosed young versus diagnosed old
by David Fitz (Jul 15)

Was that Gianantonio? I’ve spoken to him before and that was along the lines of his opinion.
I did chat with my haematologist about TFR in older patients, and she said that there tended

by Nimbus2 (Jul 15)

I have viewed the medical presentations for CML Horizons 2019 provided at the link below:
https://cmlsupport.org.uk/article/cml-horizons-2019-presentations-and-vi...
One of the presenters states
Category: Treating CML

Replies: 1

Last updated: 15 July 2019
Justine on 12 July 2019

Category: Blood tests

Replies: 4

Last updated: 13 July 2019

Latest PCR test results - do low blood counts persist indefinitely?
by Justine (Jul 13)

Thanks, good to know, appreciate that! Take good care.

by Justine (Jul 13)

Thanks, appreciate the reassurance. It's great that Sprycel has worked so well for you!

by Rick B (Jul 13)

I have counts like you. My doc says that it is a new normal for me and to not fret. Congrats on your bcr-abl score. Nice.

by Rick B (Jul 13)

I have counts like you. My doc says that it is a new normal for me and to not fret. Congrats on your bcr-abl score. Nice.
Category: Blood tests

Replies: 4

Last updated: 13 July 2019
DJ on 14 June 2019

Category: Side effects

Replies: 14

Last updated: 12 July 2019

Is Sprycel bad for side effects?
by DJ (Jul 12)

THank you for all your replies.
She is having heart palpitations when she is out of breath. She has to sit down. Did you guys have that? Also, it seems random - the shortness of breath/

by alison (Jun 25)

My husband had to go off Sprycel because of shortness of breath. He never developed pleural effusion. He is 75 ad in great shape. He was on 70 mg and then 50 mg. I have followed

by DJ (Jun 25)

Thanks Chuck
He put her on the sprycel 20mg because her side effects were so bad with the others. He was hoping she could tolerate that.
It's been two weeks and we've not seen him yet with a

by Chuckster (Jun 25)

Real sorry to hear your mom is getting very sick on the 20MG of Sprycel.
What does her oncologist say about the meds and the real bad side effects etc?
All the best to your mom!
Category: Side effects

Replies: 14

Last updated: 12 July 2019
gbatalha on 16 April 2019

Category: Blood tests

Replies: 13

Last updated: 12 July 2019

bcr-abl 12 months
by David Fitz (Jul 12)

Congrats! Enjoy the vino!!
David.

by AlastairC (Jul 12)

Enjoy the sardines and the wine!

by gbatalha (Jul 12)

Alastair, Job and David,
You were all right.
I just received the 15-month bcr-abl and the value is 0,059%. So, with a 3 month delay I was able to reach the MMR holy grail!!
Just

by David Fitz (Apr 24)

If I squint really hard, I can kind of see her point. 2.2% after 4 months is fab - you want to be under 10% at 3 months. So not to get to 0.1% at 12 months could be viewed as disappointing in that
Category: Blood tests

Replies: 13

Last updated: 12 July 2019
catz555 on 6 July 2019

Category: Uncategorised

Replies: 6

Last updated: 11 July 2019

Does ones hair ever come good?
by onekayaker (Jul 11)

I use to get my hair highlighted but stopped after my CML dx. I am now letting nature do it own highlighting and I call it "My Grey Pride Parade" they wave at me as if saying

by Tanya Cuffe (Jul 10)

Thanks for responding.No not on any other drugs,just tumeric,Magnesium,Multi Bs,Spirulina,Vit D and Vit E...My hair is embarrassing now but if that’s the worst thing I have to worry about...I

by onekayaker (Jul 9)

I thought my hair loss was due to my TKI but it ended up being the 1mg Lorazepam the doctor prescribed me to make me sleep at night. Gave up the sleep help for hair.

by onekayaker (Jul 9)

I thought my hair loss was due to my TKI but it ended up being the 1mg Lorazepam the doctor prescribed me to make me sleep at night. Gave up the sleep help for hair.
Category: Uncategorised

Replies: 6

Last updated: 11 July 2019
chigi on 10 July 2019

Category: Uncategorised

Replies: 4

Last updated: 11 July 2019

PCR Too Low to Quantify
by chigi (Jul 11)

Thank you for the feedback

by chigi (Jul 11)

Thanks for the quick response Scuba

by Karinne (Jul 11)

It could just be that the lab you use, increased the sensitivity of the test and an”undetected” could become “detected but”. You have to remember that “undetected

by scuba (Jul 11)

Yes, it means you are not going to die from CML.
You are in the noise of the test. The 'detection' could very well be contamination. Unless you have a trend upward from 3 consecutive tests
Category: Uncategorised

Replies: 4

Last updated: 11 July 2019
Karinne on 4 July 2019

Category: Uncategorised

Replies: 11

Last updated: 11 July 2019

Curcumin side effects
by tom888 (Jul 11)

The oxalate salts of turmeric can cause formation of stones in the bile and kidneys. Of course the goodness of using turmeric is much more than these small side effects. These side effects occur

by scuba (Jul 9)

Tom - would you refer to the article you mentioned on Curcumin causing stone formation in bile?
This is opposite to what I learned about Curcumin and bile salts. Curcumin is shown to cause

by tom888 (Jul 9)

We could search Google for the side effects of turmeric. I noticed that it can cause stomach upset and stone formation in the bile. In my case, I did the detoxification of bile and liver as

by onekayaker (Jul 5)

I drink a bottle of water as well when taking supplements
Category: Uncategorised

Replies: 11

Last updated: 11 July 2019
onekayaker on 9 July 2019

Category: Uncategorised

Replies: 7

Last updated: 10 July 2019

Article I found today
by David Fitz (Jul 10)

It is, because the 2013 guidelines remain the latest available from ELN.
There are also some NHS guidelines under development, but they need more work too.
David.

by kat73 (Jul 9)

David, I think that one you referenced is still the 2013 one.

by David Fitz (Jul 9)

Under the “Patient Info” and “Treatment Guidelines” on this site you’ll find links to the latest ELN and NCCN guidelines.
ELN are due an update to their guidance soon (

by kat73 (Jul 9)

Isn't there an even more recent update than 2013? For both ELN and NCCN guidelines?
Category: Uncategorised

Replies: 7

Last updated: 10 July 2019
Karinne on 13 June 2019

Category: Uncategorised

Replies: 10

Last updated: 10 July 2019

Update on my pcr
by chigi (Jul 10)

Excellent news!

by Karinne (Jun 28)

Thanks to all of your messages. 😁😎

by onekayaker (Jun 28)

Excellent Cari!

Steff

by chrissie (Jun 17)

Brilliant news. Grapefruit maybe? (I think i am obsessed with the stuff as it's been soooo long without one).
Seriously, well done,
Best
Chrissie
Category: Uncategorised

Replies: 10

Last updated: 10 July 2019
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