You are here

Forum

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
jmonzione on 9 May 2019

Category: Uncategorised

Replies: 18

Last updated: 19 May 2019

Looking for resources to aid discussion about lowering dose of sprycel
by Sarah63 (May 19)

Actually, at one point I got down to 11%, but... still... yes. And I am a lot to blame, I was not diligent with compliance. Also my doctors (two different ones) did not share the info on milestones

by RC Kirk (May 19)

Hi Sarah,
Am I reading correctly that your PCR scores never got below 32% while you were on imatinib? I'm surprised you were kept on imatinib for so many years with such a high PCR!
Kirk

by scuba (May 18)

Sarah,
"He would not read either article but offered me speed. No thank you"
.... what does that tell you about these kind of "doctors"?
Your sprycel response was very similar to

by Sarah63 (May 18)

Hi Kat73,
My response for 7 years on Imatinib hovered between 88% and 32% (IS), till mutation was found in 12/18. I changed to Sprycel in 01/19. First month 100mg, dangerous suppression. Off for
Category: Uncategorised

Replies: 18

Last updated: 19 May 2019
Gian P on 16 May 2019

Category: Blood tests

Replies: 4

Last updated: 17 May 2019

BCR-ABL RESULTS ARE IN...
by Gian P (May 17)

Kirk,
You are right! I looked into my history and the Gleevec was 400 mg tablet.
sorry for the misinformations, my doctor plan is to increase the Sprycel after the two weeks if the BCR hasn’t

by RC Kirk (May 17)

I'm surprised that when you started treatment you were taking 100mg Gleevec. I've never heard of anyone being started on such a low dose of imatinib.
Has your doctor said what the next

by Gian P (May 17)

Thank you for your reply Kirk,
july 2018 i was diagnosed, and i started Gleevec 100mg. My platelets dropped so i changed to Sprycel 100 mg, my platelets dropped and again Sprycel 80mg, then 60 mg

by RC Kirk (May 17)

https://www.cmlsupport.org.uk/thread/12967/platelets-level-low

Hi Gian,
In your previous post you wrote "I was on Gleevec 100 mg at first". Did you mean 100 mg/day or instead
Category: Blood tests

Replies: 4

Last updated: 17 May 2019
saifur360 on 17 May 2019

Category: About CML

Replies: 1

Last updated: 17 May 2019

Is CML curable or not?
by scuba (May 17)

Your PCR is 0.03 %. You would need your PCR to be < 0.01% for at least two years before trying treatment free remission (TFR). ~50% of patients who try TFR at this point have successful outcomes

by saifur360 (May 17)

Now my RQ-PCR is 0.033 & everyday I am taking Imatinib (Veenat 400 mg)
Is my Hematologist reduce my Imatinib power, When the pcr more down?
I want to know about treatment free remission. If
Category: About CML

Replies: 1

Last updated: 17 May 2019
Nimbus2 on 12 May 2019

Category: Uncategorised

Replies: 4

Last updated: 16 May 2019

Who arranges the annual national CML conference?
by Nimbus2 (May 16)

Thank you, Kat, for this. It is very difficult proving any scientific supposition with a population of one. It seems that haematologists are not necessarily the best qualified people to comment upon

by kat73 (May 13)

In the US schools, a lot of 8th graders (Middle School/Junior High, i.e., 13 yr olds) take a course called, "Scientific Methods and Analysis". You pass with flying colors, Nimbus!

by Nimbus2 (May 12)

Thank you for your response, David.
I was sceptical of my own conjecture that Accord imatinib was acting as laxative. I cycled between Accord and Cipla using each for at least seven days at a time.

by David Fitz (May 12)

It’s arranged by a combination of the NHS clinician sub-group for CML, and us, CML Support.
It’s a good point and maybe we could look into this on the agenda for 2019. I don’
Category: Uncategorised

Replies: 4

Last updated: 16 May 2019
Cali48 on 26 April 2019

Category: About CML

Replies: 10

Last updated: 14 May 2019

Cure for CML
by Damian Gabilondo (May 14)

getting closer
https://www.redaccionmedica.com/secciones/hematologia-y-hemoterapia/logr...

by tiredblood (May 14)

I have numbness and tingling in my hands at times, and becoming more frequent.
I’ve been diagnosed with seronegative spondyloarthropathy (ankylosing spondylitis). I kind of figured it was

by scuba (May 8)

Cancer occurs because our immune system developed (or inherited) a failure to check it. Unless a new gene therapy is 'invented' which trains our immune system to identify and kill cancer

by Harriet (May 8)

my doctor and i had a conversation about a cure,he said that if i was at MR 4.5 for 2 years i could try a medicine holiday,well he said if your blood stays stable for a years,we are still not so far
Category: About CML

Replies: 10

Last updated: 14 May 2019
jasonswife1686 on 13 May 2019

Category: Uncategorised

Replies: 2

Last updated: 13 May 2019

Just venting / BMB
by kat73 (May 13)

Sarah - I almost can't think of two things that exhaust the human spirit more than pain and uncertainty. Uncertainty is a kind of fear, so I guess it's really pain and fear. I

by RC Kirk (May 13)

Hi Sarah,
I'm sorry to hear about your bone pain. I wish that I could offer some advice about that.
That's awesome that you're going to get some feedback from Dr. Druker! Was

by jasonswife1686 (May 13)

I have my third BMB coming up on May 15th. I was diagnosed in August 0f 2018. This will be my THIRD...
I am a little nervous. I know what to expect, but it doesnt mean it gets easier. I am tired of
Category: Uncategorised

Replies: 2

Last updated: 13 May 2019
MattyMartinesSr on 9 May 2019

Category: Uncategorised

Replies: 4

Last updated: 12 May 2019

Sprycel
by David Fitz (May 12)

Macrogol is indeed a laxative ... but I suspect it’s in the coating for Sprycel for other reasons.
Have you ever taken a sachet or two of Movicol? That’s like 95% Macrogol - more than

by Nimbus2 (May 12)

Sprycell contains the following active ingredient dasatinib monohydrate plus the following excipients:
List of excipients
Tablet core
Lactose monohydrate
Microcrystalline cellulose

by MattyMartinesSr (May 12)

Thank you

by scuba (May 9)

Sprycel is not a steroid. Sprycel contains only sprycel which is a tyrosine kinase inhibitor.
Category: Uncategorised

Replies: 4

Last updated: 12 May 2019
Botagoz Abdrakh... on 28 April 2019

Category: Uncategorised

Replies: 5

Last updated: 9 May 2019

Operating kidney stones
by Richard42 (May 9)

My father had a kidney stone in about 1974 or 5. He had surgery to remove it - from memory (they kindly let him take it home and I have a vague recollection of seeing it..) it was a few mm in size.

by MJP (May 5)

0.6 MM or CM? 0.6 mm is consider a very small stone, whereas a 4+ mm stone is large and harder to pass.
I had shock wave lithotripsy for a 5mm stone lodged in the ureter (tube

by scuba (Apr 29)

... additional information on Kidney stones:
https://www.lifeextension.com/Protocols/Kidney-Urinary/Kidney-Stones/Pag...

by Botagoz Abdrakhmanova (Apr 29)

Scuba - many thanks, v helpful and releaving info!
Category: Uncategorised

Replies: 5

Last updated: 9 May 2019
Ontasigna on 9 May 2019

Category: Treating CML

Replies: 1

Last updated: 9 May 2019

Lymphocyte - 66℅
by scuba (May 9)

It's not percentages that matter (for the most part) - it is the absolute numbers which tell the story.
At any given time, your body will produce/release more lymphocytes and/or neutrophils in

by Ontasigna (May 9)

Hi there,
I go my Blood report today. My lymphocyte is at 66℅ and Neutophil at29℅
Lymphocyte is bit high. Anything to be worried about.
Please suggest.
Category: Treating CML

Replies: 1

Last updated: 9 May 2019
saifur360 on 27 April 2019

Category: Blood tests

Replies: 2

Last updated: 8 May 2019

For low Hemoglobin
by Amit (May 8)

Try this product called Forever Greens from a company called Forever Living. Its worked miracles for my hemoglobin as well as a lot of other people I know. It's a white bottle with green fonts.

by sorin real (Apr 28)

I had spectacular results in just 4-5 days with the following:

- red beet juice

- wheatgrass juice

You can take them on the empty stomach a couple of times a day.

The taste

by saifur360 (Apr 27)

Last September 2018 my RQ-PCR was 0.033
4 April 2019 my hematologist told me that, next RQ-PCR will give September 2019 & suggested have to continue imatinib (veenat 400 mg). But last one
Category: Blood tests

Replies: 2

Last updated: 8 May 2019