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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
gautamjaiswal on 10 July 2018

Category: Treating CML

Replies: 3

Last updated: 11 July 2018

Severe bone pain and constant fever
by SusanL (Jul 11)

You might want to check your CYP3A4 status. I just read a study about the Indian population and their slow metabolism of CYP3A4. You may be a slow metabolizer and thus have quite a bit

by gautamjaiswal (Jul 11)

Thanks buddy. The fever is something that I'm unable to get over with. Even my oncologist is unsure of why the feverish tendency.

by Tbrand (Jul 10)

I had this same wbc at diagnosis and started Gleevec right away. Similar symptoms, very weak. My blanket was heavy for me to pull over, bone pain in the legs and swollen ankles. But I got through it

by gautamjaiswal (Jul 10)

Hi,
I'm a 39yr male from India. I was diagnosed of CML a month back, June'18. My WBC count was spiked at 93000 hence I was precribed Hydrea for 10 days post which the count dropped to 7600. I was
Category: Treating CML

Replies: 3

Last updated: 11 July 2018
Riggered on 9 July 2018

Category: Uncategorised

Replies: 6

Last updated: 10 July 2018

Formaldehyde
by Justine (Jul 10)

Thank you, Denise. It is probably not useful for us to try to figure out how we got it -- though I do the same! (My biggest worry is that whatever caused it in me will also affect our sons in future

by Justine (Jul 10)

I am sorry to have posted something political. I, too, want a good place for CML info and don't want to alienate anyone. Consider me admonished, and I will not post extraneous comments like that

by Tbrand (Jul 10)

I really liked this site until this political crap. It has no business here. Take your political grief elsewhere, I don’t appreciate it. I do appreciate the outstanding feedback regarding CML though

by Felix (Jul 9)

Hi Justine ,I too was wondering if ever there has been a survey or questionnaire we can contribute to because I have blamed all sorts of things for my CML. Buying a more powerful microwave,
Category: Uncategorised

Replies: 6

Last updated: 10 July 2018
scuba on 4 May 2018

Category: Uncategorised

Replies: 18

Last updated: 10 July 2018

100 mg Sprycel is not necessary for first line treatment
by RC Kirk (Jul 10)

David, thanks for this link so we can access the original article.

by David Fitz (Jul 9)

For anyone who wants to read a copy of this paper, head to http://www.sci-hub.tw and put the DOI link below into the search box.
https://doi.org/10.1002/cncr.31357

The paper should then

by kali (Jul 2)

Thanks Kirk, I will go over to read your post.

by kali (Jul 2)

Thanks for link.
I am 4 years on Sprycel with 100, then 70 and now 50 with great results.
It would be nice to go to 20 and stay there until we learn more success with discontinuing completely.
Category: Uncategorised

Replies: 18

Last updated: 10 July 2018
MJP on 10 July 2018

Category: Blood tests

Replies: 0

Last updated: 10 July 2018

Please forgive my rant - TSH and doc
by MJP (Jul 10)

I had thyroid cancer in 2000 and had my thyroid removed along with being given 150 mci of radioactive iodine. In April of this year I was diagnosed with CML.
When I first started
Category: Blood tests

Replies: 0

Last updated: 10 July 2018
SusanL on 5 July 2018

Category: Uncategorised

Replies: 4

Last updated: 10 July 2018

Do the side effects get better? Thank you for this forum and support...
by SusanL (Jul 10)

Oh my goodness....the side effects. It was a lot easier with the steroids but my stomach was a mess. I even get depression on the gleevec. I take it at night with supper and I

by SusanL (Jul 10)

Thank you so much for responding....

by AlastairC (Jul 6)

Hi Susan, 11 years down the line I still remember the night sweats and bone pain well after starting imatinib 400mg. They declined over 2-3 months to a level where they didn't impact my daily life

by David Fitz (Jul 5)

Hi Susan,
400mg ... so you’re on imatinib. How long have you been taking it?
I can talk to GERD quite well, as I have a bit of a history with that. Imatinib on an empty stomach is a recipe for
Category: Uncategorised

Replies: 4

Last updated: 10 July 2018
J. HY Wong on 1 July 2018

Category: Organising your life

Replies: 7

Last updated: 9 July 2018

New and young and worried
by J. HY Wong (Jul 9)

Thank you all for the replies, it was a bliss to read through encouraging words from the community.
I have started some slight jogging since then, while I cannot feel any improvements yet, the

by davewell (Jul 3)

Hello,
and welcome again.
As other have suggested, hang in there. The first few months are the hardest, both in terms of side effects and emotional turmoil.
I started out with Sprycel 140mg

by LouiseS (Jul 3)

Hi J.
Hang on in there . The first couple of months are def tough ( where you are right now ) but my husband felt much better when his red blood counts started to return to normal range a

by David Fitz (Jul 2)

Hi there,
I'm on Sprycel / dasatinib as well. I definitely feel more tired than I used to, but dropping my dose (to 50mg) has definitely helped a bit at least. I work a 4-day week to help
Category: Organising your life

Replies: 7

Last updated: 9 July 2018
nk_godvani on 7 July 2018

Category: Blood tests

Replies: 3

Last updated: 9 July 2018

2 years results
by Philiptibbs (Jul 9)

Thats great keep up the good work!

by nk_godvani (Jul 8)

Thank you very much for the reply...

by David Fitz (Jul 7)

They are excellent figures. An optimal result.
The evidence emerging is that if you remain in a similar position, and there’s no reason to think why you wouldn’t, that in some time in the future you

by nk_godvani (Jul 7)

Hello i am on Imatinib (400) since last two years. PCR at 15 month -0.090,

at 18 month-undetactable,

at 21 month-0.022,

at 24 month-undetactable. What about future prognosis. Pls
Category: Blood tests

Replies: 3

Last updated: 9 July 2018
LouiseS on 7 July 2018

Category: Uncategorised

Replies: 3

Last updated: 7 July 2018

Blood Results 3 months after dosage reduction
by LouiseS (Jul 7)

His Eosinophils is at 9% when the range is 0-5% but hopefully that doesn’t mean anything. Sometimes my googling isn’t a good thing :) Just antsy because he did reduce his Sprycel after only 6 months

by cmljax (Jul 7)

WBC is barely below low end of normal, probably due to low neutrophils - nothing to worry about at this time. Do not understand Eosinophils - normal absolute is .05 - .5 and normal % is .8% -

by kat73 (Jul 7)

We watch so much Brit TV that we're for England, too! Pretty much everything in the Acorn catalog for the past ten years . . . Not to mention Brit lit is pretty much all I read, too -

by LouiseS (Jul 7)

Hi everyone
We are waiting for results to see how my husband Paul is doing at 9 months after reducing his Sprycel from 100 to 50. But in the meantime, the initial blood results are back and
Category: Uncategorised

Replies: 3

Last updated: 7 July 2018
Vijay Kumar Verma on 2 July 2018

Category: Uncategorised

Replies: 10

Last updated: 6 July 2018

Pcr @12 months
by Vijay Kumar Verma (Jul 6)

Thanks sir,i'm cool now.all worries relieved.

by AlastairC (Jul 3)

In UK the likely timescale would be to have the next PCR test would be in September - 3 months after your last one. That would be long enough to see a further drop in BCR-ABL or to identify a

by Vijay Kumar Verma (Jul 3)

Thanks sir,my next due is in dec 18

by AlastairC (Jul 2)

Hi Vijay,
Most important thing here is that despite the change in medication the trend in BCR-ABL measured by PCR is still downwards. The reduction in the last three months shows that Imatinib is
Category: Uncategorised

Replies: 10

Last updated: 6 July 2018
David Fitz on 4 July 2018

Category: Clinical trials

Replies: 7

Last updated: 5 July 2018

Final results of DESTINY trial
by Romo (Jul 5)

Kat,
My interest in this study coupled with the Destiny Trial
is in the Destiny Trial dose reduction possibly attributed
to LSC becoming more active and therefore subject to TKI affect.

by cmljax (Jul 5)

Very encouraging. Hard to believe that standard dose of nilotinib is still considered 400 MG 2X/day in this study. I started nilotinib as my first line therapy 21 months ago at 300mg 2x/day

by kat73 (Jul 5)

Romo - Very interesting - thanks for posting this. I'm only sorry that their cohorts did not include patients on 20 mg Sprycel, because now there will still be controversy over that low a dose

by davewell (Jul 5)

This is very good news, that 72% for MMR4 is a crazily high number, compared to the previous results.
The part about the utility of de-escalation is also very intriguing. Seems like bit by bit we
Category: Clinical trials

Replies: 7

Last updated: 5 July 2018
SusanL on 3 July 2018

Category: Uncategorised

Replies: 2

Last updated: 5 July 2018

Feeling very warm after dosing my Gleevec/Imatinib every evening....
by SusanL (Jul 5)

Thank you! I found another group of people who take gleevec and three out of many became warm..from the inside. Their warmth actually immanated from the biopsy locales....I did tell my

by Justine (Jul 4)

That is very interesting. I haven't noticed anything like that but there does seem to be quite a range of different reactions among us. It would be worth mentioning to your doctor. I have tried

by SusanL (Jul 3)

So new and so many questions....
Does anyone become quite “warm” after taking their gleevec/imatinib dose? I take it after a good sized dinner. I also have several other symptoms...but
Category: Uncategorised

Replies: 2

Last updated: 5 July 2018