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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
jasonswife1686 on 6 May 2019

Category: Uncategorised

Replies: 5

Last updated: 8 May 2019

Vitamin d3
by Felix (May 8)

Thank you Scuba for all this information.Just in time as this is starting to happen to me .Every silver lining has a cloud .Just when you think you are doing really well another obstacle is slammed

by RC Kirk (May 7)

Hi Sarah, I'm sorry to hear your platelets are still too low. Hopefully they'll be up on your next test. I think you said that they have to get above 50. How long

by scuba (May 7)

Mixing a lot of biology here.
Vitamin D3 is important for calcium transport and immune activation ( ... T-cells).
Sprycel is a TKI which can (and will) cause myelosuppresson ... low blood counts).

by jasonswife1686 (May 7)

I have failed gleevec and then started sprycel and it also made my numbers drop way to low. So now we are waiting for my numbers to climb and in limbo with meds. I have a mutation testing bone
Category: Uncategorised

Replies: 5

Last updated: 8 May 2019
Roland on 2 May 2019

Category: Treating CML

Replies: 3

Last updated: 7 May 2019

Sprycel after effects
by Roland (May 7)

Thanks for the reply. I have noticed mine is more noticeable in the morning also. I am experiencing higher weigh as well. I will take this up with my Oncologist my next visit. I was diagnosed PH+CML

by dlb65 (May 6)

Yes I too experience numbness in my hands in the distribution of the median nerve. It is worse in the mornings and it seems to be related to fluid retention in that when I’m up in my weight

by David Fitz (May 2)

Hi Roland,
It is listed as a "common" side effect of dasatinib in combination with traditional chemotherapy in children, but it's not something I have commonly seen adults complain of

by Roland (May 2)

I have developed numbness in my hands after approx. one year use. Anyone experience this?
Category: Treating CML

Replies: 3

Last updated: 7 May 2019
Aroura111 on 4 May 2019

Category: Uncategorised

Replies: 1

Last updated: 4 May 2019

Increase in Basophils 1 week after commencing treatment for accelerated phase CML
by Tbrand (May 4)

I had pretty much the same diagnosis 12/15. I know my results when starting treatment we’re all over the place. I was monitored ever 3 weeks, CBC, FISH, PCR, given antibiotics for low WBC

by Aroura111 (May 4)

Hi everyone, my husband (38yrs) was diagnosed 1.5 weeks ago with CML accelerated phase. He was commenced on Imatinib 600mg. We did another blood test exactly 1 week after starting Imatinib and
Category: Uncategorised

Replies: 1

Last updated: 4 May 2019
scuba on 15 April 2019

Category: Treating CML

Replies: 13

Last updated: 3 May 2019

Fasting impact on immune system
by Damian Dl system (May 3)

Totally, I think I went into ketosis, I did not have to check it, but if I had strong breath with extreme tiredness and urinated a lot, I think if I was not there or I was very close. The next I

by scuba (May 3)

Hi Damian,
First time is tough. What helps is drinking Himalayan salt water (1/4 teaspoon in an 8 oz. glass) first thing in the morning and then again in the afternoon. All other times need to drink

by Damian Dl system (May 3)

Hello, first attempt of fasting failed, I only achieve 48 hours of fasting, I hope it works for something, I felt very tired this morning and I had no strength and some dizziness, I had to suspend

by scuba (Apr 28)

Great link - here is an additional one cited in the article:
https://blog.terapiametabolica.com/rehabilitacion-metabolica
There is no doubt in my mind that fasting coupled with an alternating
Category: Treating CML

Replies: 13

Last updated: 3 May 2019
kali on 1 May 2019

Category: Uncategorised

Replies: 5

Last updated: 3 May 2019

TKI question
by kali (May 3)

David, thank you for the information! I am going to talk to my onc about it at my next appointment.

by David Fitz (May 3)

So for those, it's not that you cannot take them it's just that you and your doctor should be careful and aware of the possible interactions.
Here's some important stuff about

by kali (May 2)

Thank you both for the replies. I am on Sprycel 20 mgm and Eliquis.
The drug interaction site was very helpful! Thank you for providing it.

by David Fitz (May 2)

Like with many drug interactions, "it depends".
Imatinib and warfarin, for example:
Data from human liver microsome studies indicate that imatinib is a potent competitive inhibitor of the
Category: Uncategorised

Replies: 5

Last updated: 3 May 2019
Phuong Phuong on 2 May 2019

Category: Blood tests

Replies: 4

Last updated: 3 May 2019

Should i be worried???
by Phuong Phuong (May 3)

That is really helpful. Thank you David!

by David Fitz (May 2)

Here's our page on blood counts, and normal ranges. There's a table outlining the expected ranges for each cell type.
https://www.cmlsupport.org.uk/section/normal-blood-counts

by Phuong Phuong (May 2)

Thanks AlastairC
the bone marrow report shows that the cells are very very poor (including red blood cell type, WBC type, platelets type) and no blast.
Is this related to aplastic anemia? Has any

by AlastairC (May 2)

Don't worry about the PCR. The difference between undetected and 0.017% is completely unimportant, and more to do with the repeatability of the test process than your blood. I can't
Category: Blood tests

Replies: 4

Last updated: 3 May 2019