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Nimbus2 on 19 May 2019

Category: Uncategorised

Replies: 3

Last updated: 31 May 2019

UK Only >>> Yellow Card Scheme
by Nimbus2 (May 31)

I received today a prompt and long response from the MHRA.
They asked me for more information but did explain why different generics may cause varying side-effects. I did not learn much from this

by Nimbus2 (May 28)

Hello John. Thank you for replying.
This is a difficult subject. Some clinicians argue that the generics are absolutely equivalent but from the various forums I can see that patients are claiming

by johnw1001 (May 28)

Hi Stephen,
With regard to your posting I am curious as to whether the Accord generic imatinib is creating a different side effect profile for you from other generics and different to the

by Nimbus2 (May 19)

I discovered from a patient medication leaflet that there is a scheme for reporting side-effects from drugs.
I have reported Accord imatinib using the scheme. I believe that the patient is promised
Category: Uncategorised

Replies: 3

Last updated: 31 May 2019
Mick E on 8 May 2019

Category: Side effects

Replies: 8

Last updated: 30 May 2019

Bosutinib treatments temporarily stopped
by Mick E (May 30)

Steff thanks for the supplement recommendations, milk thistle may be a good choice if liver function is going to be troublesome!
I have restarted meds but now on 400mg and have to have liver test in

by onekayaker (May 30)

Oh yes and I take 2 of the 175mg milk thistle a day for the liver counts.

by onekayaker (May 30)

Oh yes and I take 2 of the 175mg milk thistle a day for the liver counts.

by onekayaker (May 30)

Mick,
Scuba a very active member here has great posts on supplements for joint pain. 400 mg of Magnesium taurate a day is one. I take the D3 with K2 (MK-4 plus MK-7), B12 and a
Category: Side effects

Replies: 8

Last updated: 30 May 2019
jasonswife1686 on 28 May 2019

Category: Uncategorised

Replies: 4

Last updated: 30 May 2019

Update.
by onekayaker (May 30)

Best of luck and prayers to you.

Stephanie

by Job Guerra (May 30)

You and Jason have been on my thoughts and I have shared your story with a prayer group I meet up with (because you asked for prayer). I know it is hard and at times seems hopeless. I

by jasonswife1686 (May 29)

Edited post / update.
The reasoning for the ultrasound of the spleen is because it has to be a certain size for some new medications they want to start. They want to start a medication to help my

by RC Kirk (May 28)

Hi Sarah,
It's good to hear that you got a little bit of good news from your biopsy. I'm hoping that Dr. Druker and the folks at Mayo can help with some insight and that you can get
Category: Uncategorised

Replies: 4

Last updated: 30 May 2019
Toni on 29 May 2019

Category: Uncategorised

Replies: 4

Last updated: 29 May 2019

Nilotinib and hair dye
by Toni (May 29)

Thank you Debbie. I think as soon as you say cancer treatment they all run scared. I’ve just found a hairdresser who has done a skin test and taken a hair swatch to test so just need to wait

by debsydoo (May 29)

I’ve been on Nilotinib from September and had my hair dyed twice by my hairdresser of more than 10yrs. Because I felt my scalp was a bit sensitive on the first trip he just used foils

by Toni (May 29)

Oh, thank you David. But I am petrified of the hairdressers as it is and I would be mortified if it all went horribly wrong and it was my fault for not telling them in the first place!

by David Fitz (May 29)

By not telling them, to be honest. In the same way I wouldn't tell the massage therapist if they asked me.
David.
Category: Uncategorised

Replies: 4

Last updated: 29 May 2019
Sarah63 on 25 May 2019

Category: Treating CML

Replies: 2

Last updated: 25 May 2019

WBC low after 2 wk break from sprycel
by Job Guerra (May 25)

Apologies about Mayo clinic I was thinking of another thread. Still same comment regarding the rest though.

by Job Guerra (May 25)

Sarah - I'm not sure how long it takes for WBC to rebound/start climbing again after no TKI but I can say that many of my WBC have come in at 2.9 or around there and I continue taking them without

by Sarah63 (May 25)

It worries me that my WBC count remains low (3.3), after 2 week break from Sprycel. HGB also low (11.8) but RBC and PLT good. Why isn’ WBC bouncing back? Also, I still feel
Category: Treating CML

Replies: 2

Last updated: 25 May 2019
Che Mahilom on 24 May 2019

Category: Drug-drug interactions

Replies: 1

Last updated: 25 May 2019

Hi Levs
by Sarah63 (May 25)

There is a Facebook Group named “CML International Network Journey to a Cure” where this question about finding TKI in India and the Philippines comes up often. You may both want

by Che Mahilom (May 24)

My mom needs Imatinib 100 mg, but it is very expensive in philippines. I try to search for the cheapest price or the manufacturer and i found this site discussing about the medicine. Its very
Category: Drug-drug interactions

Replies: 1

Last updated: 25 May 2019
Aroura111 on 22 May 2019

Category: Blood tests

Replies: 12

Last updated: 25 May 2019

Anyone have a PCR result above 100% at diagnosis?
by Sarah63 (May 25)

Scuba,
This is of very high interest to me: (quoting you):
“ Random testing of healthy people showed 10% had bcr-abl detected (i.e. 0.01%) p210 clone with no disease...”
“...

by scuba (May 24)

Know that the "7" is a likely place holder and not a real number. PCR values below 0.01 are noise at best. It is indistinguishable from PCRU ("undetected"). Labs will often put

by RC Kirk (May 24)

I received my latest PCR score last week and it was .007% IS. I've been alternating 20mg Sprycel with imatinib for the last year or so. I think I'll take 250mg imatinib for the

by scuba (May 24)

RCKirk:
This is your diagnosis status:
"Yes, my PCR score was above 100%.
PCR - p210 transcript 118.7% IS
FISH - 93%
cytogenetics - t(9;22) translocation in all 20 of the metaphases examined
Category: Blood tests

Replies: 12

Last updated: 25 May 2019
Sarah63 on 23 May 2019

Category: Treating CML

Replies: 5

Last updated: 24 May 2019

Any problem cutting tablets?
by RC Kirk (May 24)

I concur with David and Kat. I've done it and lived to tell about it.
I've even quartered 100mg tablets, but it takes patience to get them lined up just right in the pill splitter.
I

by kat73 (May 24)

(Head nodding in agreement - good idea.)

by David Fitz (May 23)

I agree with you Kat, against the manufacturers guidance. Maybe the best way to do it would to be to make sure to take each half of a pill on consecutive days, ensuring you at least are getting the

by kat73 (May 23)

I did it. Nobody told me not to. I got a pill-cutter box at the pharmacy and it was easy. I did try hard to align each pill correctly in the box so as to make an exact half cut; I
Category: Treating CML

Replies: 5

Last updated: 24 May 2019
Jason Graves on 23 May 2019

Category: Uncategorised

Replies: 2

Last updated: 23 May 2019

No bone marrow
by RC Kirk (May 23)

https://www.ncbi.nlm.nih.gov/pubmed/2239919
One of the listed reasons for it is that you have CML. Low platelets is also frequently seen in patients with dry taps.
If I'm reading it

by Sarah63 (May 23)

I have wondered this also as my BMB came up “dry” in 2012, which I assume means the same thing. I know I’ve still got bone marrow though, cause I’m still ticking. I so

by Jason Graves (May 23)

What does it mean with the bone marrow is empty?
Category: Uncategorised

Replies: 2

Last updated: 23 May 2019
Philiptibbs on 29 March 2018

Category: Treating CML

Replies: 20

Last updated: 22 May 2019

Very Scared and Confused...
by Philiptibbs (May 22)

I'm seeing my Doctor June 3rd and asking to be switched to Sprycel .

by cmljax (May 21)

Have you talked to your doc about switching TKI's. Sprycel would be my first choice because Tasigna is more like Gleevec than Sprycel, so Tasigna might cause the same pain. Also, if

by Philiptibbs (May 16)

They also say opioids are bad and I agree but no one has an answer for why my muscles hurt so bad and how to get rid of the bone pain and my ribs hurt and lower back and mt legs are very weak . They

by Philiptibbs (May 16)

I felt better when I was taking the pain pills but know they are no good for me and thats why I reduced the amount I'm taking . If my back and ribs and legs didnt hurt so much Id get off them
Category: Treating CML

Replies: 20

Last updated: 22 May 2019
bendicco on 17 May 2019

Category: Uncategorised

Replies: 3

Last updated: 22 May 2019

LUMP on back of neck
by MartinZA (May 22)

Hi again
My lumps took over two years to develop so it seems to be a rare side effect that appears late in treatment. I also found only three research papers where the phenomenon was studied,

by bendicco (May 21)

Hi Martin, thanks for responding. Really strange, I had a larger lump and it has gotten smaller, but still there. In the morning when I wake up it is like a hard marble, and as the day passes it is

by MartinZA (May 20)

Hi there
I was on dasatinib and developed a lump on the back of my neck after about 2 years of 100mg daily. The doctor had no idea what it was and took biopsies when several more began to appear.

by bendicco (May 17)

Recently noticed a lump on the right side of the back of my neck. Could this be TKI related?
Category: Uncategorised

Replies: 3

Last updated: 22 May 2019
MartinZA on 22 May 2019

Category: Blood tests

Replies: 0

Last updated: 22 May 2019

Rouleaux in blood
by MartinZA (May 22)

Hi everyone
It's been a long time since I've posted last and, despite complications, my CML is well controlled with my latest PCR test showing 0.033% and MMR on 400mg imatinib. However
Category: Blood tests

Replies: 0

Last updated: 22 May 2019
David Fitz on 17 May 2019

Category: Uncategorised

Replies: 9

Last updated: 22 May 2019

Thread "subscriptions" and notifications
by Sunny (May 22)

David, this is a major improvement and VERY helpful.
I am a newbie, have never posted, but visited the forum few times. Still trying to find my way around.
Many thanks.
pigeon.

by David Fitz (May 21)

Great - I'm pleased you found a way to get it to work for you.
David.

by Nimbus2 (May 20)

David, I have worked this out. It is Kaspersky which is introducing the security layer around the dictation box. But that is not actually the problem. If I disable rich text then Dragon indicates

by Nimbus2 (May 20)

Hello David. I am using Dragon Naturally Speaking. Please, do not spend your valuable time on this since I have a good workaround and it is probably a security measure in my own system that is
Category: Uncategorised

Replies: 9

Last updated: 22 May 2019
cmljax on 18 May 2019

Category: Uncategorised

Replies: 2

Last updated: 21 May 2019

Question for Scuba
by cmljax (May 21)

Thanks Scuba - I told her that there's no such thing as a free lunch, but she said to ask Scuba. I told her it hurts me to think that she thinks that you are smarter than I and she said it

by scuba (May 18)

The short answer is no.
Keto 'salts' will add exogenous ketones to the blood. Your body will burn these ketones and excrete them at the same time to get the levels down, but is not making

by cmljax (May 18)

My wife sent me an article recently about Keto salts, which purport to put the body into ketosis so it will burn fat. If true, these salts are the equivalent of the Atkins diet without all the
Category: Uncategorised

Replies: 2

Last updated: 21 May 2019
jasonswife1686 on 20 May 2019

Category: Uncategorised

Replies: 4

Last updated: 21 May 2019

Blood Counts
by kat73 (May 21)

Hematocrit low, but OK. That's where I was in early days of Gleevec (first two years). Don't mean to make light of your fears - I remember thinking anemia might be going on and I

by Job Guerra (May 21)

Agree with Kat...my WBC has always been around that since starting TKI (21 months). Your Platelets are low though. Mine are always low but like 90-100. Strange that you went from 62-28 but this

by jasonswife1686 (May 20)

ANC - 0.75
Hemotacrit - 28.4

by kat73 (May 20)

Except for platelets, your counts aren't all that low for CML patients early on. In fact, my WBC is always around that, and I've been at this almost 10 years. What is your
Category: Uncategorised

Replies: 4

Last updated: 21 May 2019
bp3 on 7 May 2019

Category: Treating CML

Replies: 5

Last updated: 21 May 2019

Bosutinib and fasting
by bp3 (May 21)

Brc-abl bounces from .6 to 1.1 or so for the last year and a half. Tested every 3 months.

by bp3 (May 21)

Thanks for the link!

by RC Kirk (May 8)

How have your PCR numbers been since a year ago? Are you still taking 500mg Bosulif?
https://www.cmlsupport.org.uk/thread/12160/pcr-risingneed-advice

by RC Kirk (May 8)

Or you could take it without food for a few days and it probably wouldn't cause any problems.
Here's a quote from a review article about bosutinib:
"The effect of food was studied among
Category: Treating CML

Replies: 5

Last updated: 21 May 2019
alexmcpee on 17 May 2019

Category: Uncategorised

Replies: 4

Last updated: 20 May 2019

12 month PCR no MMR
by MartinZA (May 20)

Hi Alex
Hang in there... I know the results are disappointing and I was there myself with 0.57% after a year. But as others have said, the trend is so important and yours is downwards.
I only

by Justine (May 19)

Hi Alex, I was diagnosed April 2017 and did not achieve MMR (0.0924) on imatinib until 21 months. Last checkup, at 24 months, I was lower still, at 0.049. Doing pretty well on imatinib and my

by cmljax (May 18)

Your trend is good and there's no reason to believe it won't continue. While it's impossible not to worry at all (I've been <.003% for 18 months and I still worry a little at

by Tbrand (May 17)

For Months 6 thru 11, .7, .2, .3, etc. then on month 12, .02. It can happen any time. You’ll get there, very close. Now I get .07, .03, .05, .0000, .02, etc. It sucks and will consume
Category: Uncategorised

Replies: 4

Last updated: 20 May 2019
David83 on 19 May 2019

Category: Uncategorised

Replies: 4

Last updated: 20 May 2019

Monosomy 7
by David83 (May 20)

Thank you Scuba, fascinating insight into the issue and your journey. It is of course a stressful time and the waiting around for further tests and indications as to what is happening isn’t

by scuba (May 20)

After I was diagnosed and my PCR fell to around 1%, monosomy 7 and trisomy 8 showed up. I was concerned about the monosomy 7, but was told it can come and go and often disappears in CML patients. It

by David83 (May 20)

Thanks for that link, interesting reading. There is at least some hope there.
It’s just a bit tough at the moment as it’s been so difficult getting the CML under control with infections

by Job Guerra (May 20)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4771850/
I thought you would find this article interesting. Of course everybody is different but keep your head up.
Category: Uncategorised

Replies: 4

Last updated: 20 May 2019
r06ue1 on 20 May 2019

Category: Food & fitness

Replies: 0

Last updated: 20 May 2019

Can Turmeric Supplements Damage Your Liver?
by r06ue1 (May 20)

I know more than a few of us likely take this supplement, just be aware of the side effects.

https://www.healthiguide.com/nutrition/can-turmeric-supplements-damage-y...
Category: Food & fitness

Replies: 0

Last updated: 20 May 2019
Nimbus2 on 19 May 2019

Category: Uncategorised

Replies: 1

Last updated: 19 May 2019

Searching this site
by David Fitz (May 19)

It certainly hasn't been intentionally removed!
It's showing up fine for me on my phone, but we have made some technical changes in the last few days so perhaps something inadvertent

by Nimbus2 (May 19)

The search function on this site really was very good but I notice that it has been removed.
The site can be searched using Google by entering the following into the browser address bar:
site:https
Category: Uncategorised

Replies: 1

Last updated: 19 May 2019