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VioS on 3 June 2018

Category: Uncategorised

Replies: 10

Last updated: 21 July 2018

problems after switching from imatinimb to nilotinib
by David Fitz (Jul 21)

I can’t say about creatine, but my doctor was totally fine with me taking whey protein shakes after the gym.
David.

by VioS (Jul 20)

Gitel, I have oat in sud europe, butt its not irish, i will try.
David, senna sounds finne for my.
Lately i do a lot of sport in the morning (after first tasigna dose), like runnig and weight

by Gitel (Jul 19)

Irish oatmeal and other high fiber foods work wonderfully. Be sure the oatmeal is long cooking. I make a quart at a time, refrigerate it and reheat each morning. Love it and it works. I am in the US

by David Fitz (Jul 18)

That is an excellent result. Congratulations!
Don’t suffer with constipation, it’s miserable. Use bisocodyl if you really need, or something more natural like senna. If it really is mild, try prunes
Category: Uncategorised

Replies: 10

Last updated: 21 July 2018
Nimbus2 on 17 July 2018

Category: Uncategorised

Replies: 7

Last updated: 20 July 2018

I think I am heading your way )-:
by Nimbus2 (Jul 20)

Hello again, Louise. Yes, my impression is that CML "is the one to have". The story certainly helps family members to gasp with relief. I start on Imatinib tomorrow morning. I was told

by LouiseS (Jul 20)

Sorry to hear Nimbus2, but if you are going to have leukemia , CML is the one you want to have, as I am sure your doctor told you.
what medication will you be taking ?
Best, Louise

by Nimbus2 (Jul 20)

I have just returned from seeing the consultant. Self-diagnosis (through many hours of Googling) is confirmed as CML. Sokal score is 0.75. Thank goodness, I have a diagnosis. The wait was driving me

by Nimbus2 (Jul 17)

Thank you, Louise. I very much like your idea of requesting copies of the result data.
I have during the past couple of weeks got most of the emotions out of my system (mainly in informing
Category: Uncategorised

Replies: 7

Last updated: 20 July 2018
SusanL on 19 July 2018

Category: Uncategorised

Replies: 1

Last updated: 19 July 2018

ON gleevec ...H2 antihistamine for GERD vs Proton Pump Inhibitor?
by David Fitz (Jul 19)

Hi Susan, all TKIs other than imatinib need an acidic stomach to be broken down properly. Imatinib is the only one that doesn’t.
PPIs and H2 agonists work differently, but achieve the same result

by SusanL (Jul 19)

Hello all,
I am wanting to know if it is okay to take an H2 antihistamine instead of a PPI because when I did the PPI my Creatinine shot up. My kidney clearance ratio also went down.
Please
Category: Uncategorised

Replies: 1

Last updated: 19 July 2018
vonnie on 16 July 2018

Category: Uncategorised

Replies: 4

Last updated: 20 July 2018

tiredness
by Romo (Jul 18)

You need more thrills in your life.
Do things more dangerous then cancer.
Eating raw shell fish with hot sauce for instance.
Romo...having fun.

by David Fitz (Jul 18)

Hi Vonnie,
Exercise really does help. But not more than you can handle. That’s the worst.
For me once a week weights and once a week yoga is great. But someone else might find a twice a

by vonnie (Jul 18)

Thanks to you Alex for supplying this thread which shows there are others with the same symptoms so i just need to do some more walking
thanks again
vonnie

by alexmcpee (Jul 17)

Hi Vonnie,
There is a long thread here on the subject that may help you https://www.cmlsupport.org.uk/thread/9243/fatigue
All the best with your journey
Alex
Category: Uncategorised

Replies: 4

Last updated: 20 July 2018
robert mcadie on 18 July 2018

Category: Organising your life

Replies: 3

Last updated: 18 July 2018

Help
by robert mcadie (Jul 18)

Thanks
We did wonder about withdrawal and will defo try the magnesium

thanks again

Maria

by LouiseS (Jul 18)

Maria I agree with Chrissie that the bone pain is because of drug withdrawal. I have read of others having same issue. I can’t remember unfortunately what you can take to ease the pain ( magnesium

by chrissie (Jul 18)

Some patients suffer withdrawal when stopping meds. It could be this.
best
Chrissie

by robert mcadie (Jul 18)

Hi all
My husband has been drug free since 21/4/18 after being on most TKIs since Nov 2003. His bcr-abl hasn’t changed since stopping meds and the rest of his bloods are looking good however
Category: Organising your life

Replies: 3

Last updated: 18 July 2018
Ellie Regina Grey on 9 June 2017

Category: Uncategorised

Replies: 7

Last updated: 17 July 2018

PCR - 3month result
by sandy craine (Jul 17)

Dear Ellie,
well done and thank you for updating us here on your progress. It is so important for us all to share our experiences with other diagnosed with CML- The main reason this site exists.
You

by davewell (Jul 17)

These are the best kind of messages!
It is so good to hear back from people that are doing well, I believe it gives us all a (needed) boost of hope and good feelings!
Congrats for the marathon! I am

by Ellie Regina Grey (Jul 14)

Hello Davewell & Sandy,
I hope both of you are doing well with your respective CML journey.
My own have been very good indeed since I penned my 1st post back in 2017 (knock on hard wood for it

by Ellie Regina Grey (Jun 12)

Thanks Sandy, it is always very reassuring to hear facts and figures from those who are going through and living with the same condition as i am.
On that note, I hope to have a great number to
Category: Uncategorised

Replies: 7

Last updated: 17 July 2018
John J on 27 June 2018

Category: Uncategorised

Replies: 4

Last updated: 16 July 2018

New CML Diagnosed
by John J (Jul 16)

Thanks everyone for the support, your words are appreciated. JJ

by LouiseS (Jun 27)

Welcome to the site John. My husband is also on Sprycel. The first few nights he didn’t sleep well and felt a bit panicky but I think that was a combination of his body adjusting and anxiety caused

by cmljax (Jun 27)

Keep us informed John. You will learn a lot from your fellow CML'ers on this site that you may or may not learn from your doctors. The shortness of breath on Sprycel is not unusual for

by David Fitz (Jun 27)

Hi John, and welcome - it’s all going to be so new to you and it takes your body and mind a while to adjust. Best of look with those blood tests, and let us know how you get on.
David
Category: Uncategorised

Replies: 4

Last updated: 16 July 2018
LouiseS on 10 July 2018

Category: Uncategorised

Replies: 13

Last updated: 16 July 2018

Bcr-ABL risen on lower dose
by AlastairC (Jul 16)

Hi Louise,
I don't think there's a simple answer to how low neutrophils can go before something needs to change. I got to around 0.7 I think when my consultant got really worried, but I didn't have

by LouiseS (Jul 16)

Since Paul is going to be increasing dosage at the end of month , I wanted to get advice on how often we should insist on blood tests to make sure his neutrophils ( already low at a1.1l , so very

by AlastairC (Jul 12)

I would add one more constraint we need to consider about doctors - one of their priorities is not do anything which may lead them to being sued. Following medical orthodoxy - or what they

by RC Kirk (Jul 12)

As an example of misinformation, I received a message from my oncologist's office telling me I shouldn't be cutting my Sprycel tablets because they have an enteric coating and that cutting the
Category: Uncategorised

Replies: 13

Last updated: 16 July 2018
Tedro on 15 July 2018

Category: Treating CML

Replies: 1

Last updated: 15 July 2018

chest congestion
by AlastairC (Jul 15)

Tedro, I believe it can be a side effect of some of the medication. Please tell us when you were diagnosed, what medication you are taking, the daily dose, and any recent test results. It is likely

by Tedro (Jul 15)

Hi,
Is persistent upper chest/respiratory congestion a known problem?
Category: Treating CML

Replies: 1

Last updated: 15 July 2018
SusanL on 15 July 2018

Category: Uncategorised

Replies: 3

Last updated: 18 July 2018

Low Neutrophil levels....
by AlastairC (Jul 15)

Susan, can you tell us when you were diagnosed, confirm your Gleevec dose, and your BCR ABL results. That will give a bit more background to base suggestions on. If as I suspect from your post you

by SusanL (Jul 15)

Thank you. I wish I had more faith in my doctor and he would talk to me when blood work like this comes out.
Do you know if side effects such as itchy rashes and sweats and mood issues

by AlastairC (Jul 15)

Hi Susan. Low neutrophils has been my life for over 30 years, and enabled my CML to be diagnosed very early. My normal level was around 1.2, and I carried some broad spectrum antibiotics in case I

by SusanL (Jul 15)

Hello all,
I just received my blood work via computer and my neutrophil levels have dropped on gleevec. I was 4.4 (norms 1.4-7.0) and dropped withing one week to 1.2 . In that week
Category: Uncategorised

Replies: 3

Last updated: 18 July 2018
Shama Parvin on 14 July 2018

Category: Uncategorised

Replies: 6

Last updated: 15 July 2018

Can I get married...and can I have a kids...
by Shama Parvin (Jul 15)

Thank you so much for your support. I will definitely go for PCR testing & will let you share my report very soon.

by David Fitz (Jul 15)

Definitely. It's very important to know your PCR figure before trying for a baby as it would really determine how it would all be managed.
Wishing you the very best of luck! Babies and CML can

by Shama Parvin (Jul 15)

Thanks romo.... Thanks a lot... 😊

by Shama Parvin (Jul 15)

Thank you so much David for your warm wishes. I am really happy to see your reply. I was totally faded up for all of these tension...now I am feeling relaxed somehow.

David I didn't tested PCR
Category: Uncategorised

Replies: 6

Last updated: 15 July 2018
Tedro on 14 July 2018

Category: Side effects

Replies: 0

Last updated: 14 July 2018

chest congestion/rattle
by Tedro (Jul 14)

Hi,
When I started this miracle drug Sprycel 2 months ago (100mg/1xdaily). My BMB showed 2% (infiltration?). I already had a months old — but thought it would go away — bit of minor
Category: Side effects

Replies: 0

Last updated: 14 July 2018
Dean on 11 July 2018

Category: Drug-drug interactions

Replies: 2

Last updated: 14 July 2018

Astragalus as CML
by Dean (Jul 14)

It seems to increase white blood cell production . Here is the link
https://www.indigo-herbs.co.uk/natural-health-guide/benefits/astragalus

Thanks for looking at this

by RC Kirk (Jul 11)

What is astragalus? I've never heard of it.

by Dean (Jul 11)

A friend recommended me to take Astragalus on a regular basis to help with my CML and general health. Does anyone have experience with this ?
Category: Drug-drug interactions

Replies: 2

Last updated: 14 July 2018
scuba on 21 May 2018

Category: Uncategorised

Replies: 17

Last updated: 14 July 2018

Higher dose of Dasatnib causes lower response ??
by scuba (Jul 14)

M.D. Anderson Cancer center in Houston, Texas
Dr. Cortes is my Oncologist.
I take 20 mg of Sprycel at night. I am PCRU.
I intend to stop Sprycel by the end of this year and test cessation (my second

by Faith (Jul 13)

I just went to the doctor today and fought for a lower dose of Sprycel. I started off at 100 mg. At 3 months went to 70mg. Now I will be lowered to 50mg. My molecular response is at 1 now and it

by tiredblood (Jun 25)

I read your theory, Scuba, to my husband. My husband said this is exactly what my hem/Onc said at my last visit. I think I was encased in brain fog or something.
Today was day 3 of dasatinib 20mg.

by RC Kirk (Jun 25)

TKIs save lives: now it's time to address overtreatment
This is a little bit off the topic of your thread Scuba, but I thought Dr. Rea's presentation was quite interesting.
https://vimeo.com/
Category: Uncategorised

Replies: 17

Last updated: 14 July 2018
Jackie Loveridge on 5 July 2018

Category: Uncategorised

Replies: 3

Last updated: 14 July 2018

Cml
by Jackie Loveridge (Jul 14)

Thank you for your response I was actually starting to get a little worried as the pain is so bad worse pain than actually when I was taking the drug but now not so worried as you have put my mind

by Buzzm1 (Jul 6)

Sorry to hear about your relapse and that you are reverting to a higher dose.
Withdrawal side-effects are not at all unusual.
See Hokiemanll's post https://communityview.lls.org/statuses/4639

by Buzzm1 (Jul 6)

Sorry to hear about your relapse Jackie and that you are reverting to a higher dose.
Withdrawal side-effects are not at all unusual.
See Hokiemanll's post https://communityview.lls.org/statuses/4639

by Jackie Loveridge (Jul 5)

Hi I was diagnosed with cml in 2014 was on nilotinib 300mg and then went in to remission it was decided after taking the drug and how well I did that we could stop my treatment altogether but 2
Category: Uncategorised

Replies: 3

Last updated: 14 July 2018
scuba on 11 July 2018

Category: Uncategorised

Replies: 10

Last updated: 13 July 2018

.. Maybe I don't want to try cessation ..... !
by kat73 (Jul 13)

Thanks, Scuba. I'd like to have a little exercise endurance . . .

by kat73 (Jul 13)

You crack me up, as usual!

by scuba (Jul 13)

I take 500 mg Quercetin once or twice daily. Any reputable brand should be fine. Just check the label to make sure it has the amount.
https://www.betternutrition.com/checkout/quercetin-energy-

by scuba (Jul 13)

Imatinib and Dasatinib work very differently in the body. Imatinib is strictly a tyrosine kinase inhibitor with effect mostly on bcr-abl. Dasatinib is both TKI and an Src kinase inhibitor. The
Category: Uncategorised

Replies: 10

Last updated: 13 July 2018
SUHAS D.S. on 7 November 2017

Category: Treating CML

Replies: 32

Last updated: 13 July 2018

Recently diagnosed with CML July 2017
by SUHAS D.S. (Jul 13)

Thanks a lot for all your help. CML support has made me so confident that I am able to be positive and also helped me to achieve this result.
Thanks again for your response.
Regards

Suhas.

by AlastairC (Jul 12)

Suhas delighted for you. Hope you and your family are very happy.

by scuba (Jul 12)

Hi David ...
... and a bad test can give a false positive too!
all that means is when PCR's fall below 0.1% - it's noise.

by David Fitz (Jul 12)

Congratulations Suhas!
Great result, but don’t worry about undetectable. Most of us have never got that result, and we’re fine. A really good PCR test will be able to detect a very low number of “
Category: Treating CML

Replies: 32

Last updated: 13 July 2018
Melaniejoy on 31 October 2017

Category: Side effects

Replies: 6

Last updated: 12 July 2018

Highly sensitive to Imatinib
by Philiptibbs (Jul 12)

I was the same way and I took Tasigna but couldn't stay on it I felt worse than the Gleevec. I had a rash all over and I work in the sun so it got way worse and I couldn't take the itching and so I

by kat73 (Jul 11)

Melanie - My experience with imatinib was like yours. I never had a happy day again after the very first Gleevec pill (400 mg). Well, except for a brief stoppage, a couple of weeks in

by SusanL (Jul 11)

I just took the trough level for imatinib. I am on 400 mg and my trough is 1685 taken 23 1/2 hours after my last dose. I wonder if my trough is a bit high and I would do well to take

by EvaH (Nov 9)

Would not surprise me if you are on too high dosage. Do get the serum test done...I believe it tests the residual ammount of tki in your system at 24jrs
re you generally sensitive to medication?
Category: Side effects

Replies: 6

Last updated: 12 July 2018
SusanL on 11 July 2018

Category: Uncategorised

Replies: 1

Last updated: 11 July 2018

Gleevec trough level taken....results 1685
by cmljax (Jul 11)

Never even heard of this - but it is interesting. As with everything else, we are all different with different TKI threshold levels. I started on full dose (600 mg per day) Tasigna in

by SusanL (Jul 11)

Hello all. I just got my gleevec trough level back from ARUP labs. It is my understanding that they are the only lab in the United States that does the test. You have your blood
Category: Uncategorised

Replies: 1

Last updated: 11 July 2018
Vikita Parmar on 9 July 2018

Category: Uncategorised

Replies: 2

Last updated: 11 July 2018

thyroid and wbc and platelets fallen down drastically
by Vikita Parmar (Jul 11)

Doctor asked him to stop imatinib for 15 days after seeing his reports.
is that safe?

by MJP (Jul 9)

http://www.eje-online.org/content/171/3/R91.full.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3824811/
Yes, thyroid dysfunction is being observed in patients treated with TKIs.

The FT3

by Vikita Parmar (Jul 9)

its been a month since my dad is on IMATINIB - 400mg.
his wbc count has come down to 2400 cells/cumm from 162571 and platelets count is 70000 cumm from 660000 after starting the
Category: Uncategorised

Replies: 2

Last updated: 11 July 2018