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philmc on 22 July 2022

Category: Uncategorised

Replies: 13

Last updated: 22 September 2022

MMR finally
by David Fitz (Sep 22)

Alex,
The thing with the guidelines is that there are loads to choose from! Some are newer, some older.
ESMO’s CML guidelines are from 2017.
ELNet are from 2020 - though lots of patients

by jill (Sep 22)

Agreed that clinicians or the guidelines should be updated. I experienced so much distress waiting for MMR. 3 years and 6 months later.
It took me around 6 months to get to 0.4 on dasatinib,

by jill (Sep 22)

Agreed that clinicians or the guidelines should be updated. I experienced so much distress waiting for MMR. 3 years and 6 months later.
It took me around 6 months to get to 0.4 on dasatinib,

by alexmcpee (Aug 1)

Fantastic news exactly 2.5 years for me too. The guidelines cause a lot of stress and anxiety and I believe they are out of date somewhat.
Enjoy the news it becomes a whole different beast when
Category: Uncategorised

Replies: 13

Last updated: 22 September 2022
scuba on 20 September 2022

Category: Uncategorised

Replies: 0

Last updated: 20 September 2022

Importance of Vitamin D testing and dose monitoring
by scuba (Sep 20)

I routinely take 5,000 IU's of vitamin D3 in the summer alternating with 10,000 IU's beginning in September which increases my average daily dose to 7500 IU's per day in winter. I have
Category: Uncategorised

Replies: 0

Last updated: 20 September 2022
EvaH on 23 March 2022

Category: Treating CML

Replies: 23

Last updated: 20 September 2022

Tfr fail?
by Sunny (Sep 20)

Well, Denise, talking about a rebel, but....this time a rebel with a cause! I couldn't agree more, 100mg dasatinib is no longer favoured as an entry dose. By now, hematologists should know that

by EvaH (Sep 20)

I've had a few hematologists since my cml journey began in 2016, none were keen on a TFR trial or even dose reduction. I started dose reduction without telling the doc, i waited for the next bcr/abl

by Felix (Sep 20)

Hi, I have been a bit of a rebel ,My Doc originally wanted me on 100 mg but I refused ,if a grown man of over 6 feet can be knocked off his feet with that dose ,then a little 5' 3 " woman

by Sunny (Sep 20)

Thank you Denise, it really took courage to go against what your doctor said, and make your own decision. I think sometimes doctors are being over cautious and therefore do not see the whole picture
Category: Treating CML

Replies: 23

Last updated: 20 September 2022
cousineg2 on 19 September 2022

Category: Treating CML

Replies: 1

Last updated: 20 September 2022

Have already tried to reach the TFR (Treatment free remission)?
by AlastairC (Sep 20)

I think you will find this video of use.
https://cmlsupport.org.uk/videos/reducing-or-stopping-treatment-who-and-...

by David Fitz (Sep 19)

The typical recommended timeframe is 5 years from the start of treatment. It’s more nuanced than that but that’s really the earliest it ought to be tried.
David.
Category: Treating CML

Replies: 1

Last updated: 20 September 2022
vonnie on 19 September 2022

Category: Uncategorised

Replies: 1

Last updated: 19 September 2022

Boost for immune system
by scuba (Sep 19)

Get a vitamin D blood test. And if you do not supplement with vitamin D3 currently, consider starting. You want your blood D level to be in the range of 60-100 ng/ml. (150 - 250 nmol/L)

by vonnie (Sep 19)

Hi all, have not been on here for a while. I'm looking for advice please. I was diagnosed with CML five years ago. I take Immatinib and get on very well with it, just some minor side effects
Category: Uncategorised

Replies: 1

Last updated: 19 September 2022
Rick B on 14 May 2019

Category: Uncategorised

Replies: 40

Last updated: 19 September 2022

CML and Prostate Cancer - Need Wisdom
by silvestorsalovii (Sep 18)

Hi! God bless you! In the early stages, the tumour does not go beyond the gland and does not manifest itself in any way. Signs occur at the second or third stage of the pathological process, when it

by Rick B (Aug 5)

My hematologist and oncologist said no relationship between Imatinib and PSA rise. I chose proton beam therapy for my prostate cancer and was declared NED a little over a year later. No ED. No

by gman50 (Aug 5)

CML for 7 months now, and doing fine with imatinib.
DX with prostate cancer (PCa) three and half years ago. Gleason 6 and opted to NOT treat it.
NOW - last few PSA tests have been

by Rick B (Mar 10)

I was fortunate to be able to have proton beam radiation just 10 minutes from my house. The treatments were completed in October 2019. My psa was over 10 when treatments started. My radiology
Category: Uncategorised

Replies: 40

Last updated: 19 September 2022
jriccoboni on 3 September 2022

Category: Uncategorised

Replies: 2

Last updated: 17 September 2022

Pcr test
by David Fitz (Sep 17)

As Kirk says, they say the same thing in a different mathematical way. It’s not testing anything different.
If you are not familiar with that notation, and are familiar with the % figures you

by RC Kirk (Sep 17)

https://cmlsupport.org.uk/glossary/log-reduction
https://en.wikipedia.org/wiki/Logarithmic_scale
https://cmlsupport.org.uk/glossary/molecular-response

The molecular response (MR) result

by jriccoboni (Sep 3)

Today my PCR had a new look it with a value that usually isn’t there.

It had two values
international scale%: 0.021
molecular response: 3.68

I have been
Category: Uncategorised

Replies: 2

Last updated: 17 September 2022
Douthitt31 on 9 September 2022

Category: Children & young people

Replies: 1

Last updated: 17 September 2022

Bcr abl increase concern
by RC Kirk (Sep 17)

It's probably not a cause for concern. Your last four PCR test results (~MR2 to ~MR2.5) are really all about the same if you consider the accuracy of the PCR test (+/- .5 log).

by Douthitt31 (Sep 9)

Hey all new to forum from USA. I was diagnosed sept of 2021. Had Bone marrow biopsy to confirm CML in that month. On 400 imatinib since diagnosis. Had Constant drops in Bcr abl till 06/2022 . 11/21
Category: Children & young people

Replies: 1

Last updated: 17 September 2022
Brett0503 on 16 September 2022

Category: Treating CML

Replies: 1

Last updated: 17 September 2022

Imatinib latest bcr/ abl result
by hannibellemo (Sep 17)

Hi, Brett,
I have no first hand knowledge but I remember an article talking about the most effective TKI against various mutations. I haven't relocated it yet but it appears from a couple of

by Brett0503 (Sep 16)

Hi all,
I had diagnosed with CP cml in sep 2019, after one year my result was hovering around 0.7 for 3 pcr tests and my dr changed(I was not convinced)my med to Bosutinib 500mg, after an year I had
Category: Treating CML

Replies: 1

Last updated: 17 September 2022
vlacer on 13 September 2022

Category: Treating CML

Replies: 2

Last updated: 13 September 2022

Concerns about CML Treatment
by vlacer (Sep 13)

Thanks Evie,
I hope the same will happen in my case

by Evie (Sep 13)

Hi

I started taking Imatinib when I was diagnosed in April this year. My bloods went back to normal after a month and have remained the same. No issues with them continuing to drop.

by vlacer (Sep 13)

I was diagnosed with CML 2 months ago, due to high WBC count
Neutrophils 17,100 H
Basophils 824 H
Lymphocytes
Category: Treating CML

Replies: 2

Last updated: 13 September 2022
ipmaki on 15 August 2022

Category: Side effects

Replies: 11

Last updated: 13 September 2022

When to Change Medications?
by melissaholts69@gnail.com (Sep 13)

Hello Pojo,

I have been taking Tasigna about a year and a half. I was diagnosed May 2020 and was prescribed Sprycel and then Gleevac (spell?) I suffered a a minor stroke from a

by Buzzm1 (Aug 22)

Ian, if you ever get around to gradually reducing your Sprycel dosage I think you will find that when your CML has been plateaued at a low level for a prolonged period of time, gradually reducing

by Felix (Aug 21)

Hi, I wouldn't change to anything right now no way your numbers are great ,your side effects will be much worse than Dasatinib,I have been there .I changed to Dasatinib but I refused

by JoeP (Aug 20)

Ipmaki I think your doc is right. If it ain’t broke don’t fix it. That is at least one way to look at it. I just switched to Tasigna after 11 years on Imatinib. The imatinib was failing
Category: Side effects

Replies: 11

Last updated: 13 September 2022
Greenbet_2000@y... on 19 July 2022

Category: Uncategorised

Replies: 7

Last updated: 13 September 2022

All Bad Hair Days
by melissaholts69@gnail.com (Sep 13)

Hello everyone, I was diagnosed in May of 2020 and I have felt so alone. Only finding one other person that would even respond d to me when I had questions. My hair started falling out about a year

by Greenbet_2000@yahoo.com (Jul 21)

A vacation ALWAYS helps. I take 600mg and an aspirin everyday. It was 800mg when I was first diagnosed but I have been at this amount for almost 2 years and my doctor has basically told me I will

by JoeP (Jul 21)

Thanks Greenbet that’s really encouraging and makes me feel hopeful. My insurance company denied the request for the new drug. Who could blame then it’s so new it’s not on my

by Greenbet_2000@yahoo.com (Jul 20)

Tasigna wasn’t working for me either at first but I did 2 back to back platelet pheresis that really helped to lower my counts and then the tasigna started to work. The beginning is the
Category: Uncategorised

Replies: 7

Last updated: 13 September 2022
MartinZA on 26 July 2022

Category: Treating CML

Replies: 45

Last updated: 8 September 2022

Is a sudden transformation from MR4 to blast crisis possible?
by MartinZA (Sep 8)

Hi Timo
Thank you so much for the message and for the good wishes - I hope you are also doing well.
There isn't much of an update yet because right now I'm waiting for my blood counts to

by TimoD (Sep 5)

Dear Martin

I was wondering how is your health and what is the latest on your treatment? I hope you have got the grasp of your low blood counts.
PS! I managed to read a post from

by JohnFromChicago (Aug 24)

Thanks for the reply! Ya I actually figured out on my own that I had HH from looking at some really old labs with even higher iron and ferritin levels that were taken over 10 years before my CML DX

by MartinZA (Aug 24)

Hi there John
Thanks for the kind words and for the interesting info - I haven't met many people with HH as well as CML. Very interesting that you don't need to have the phlebotomies.
Category: Treating CML

Replies: 45

Last updated: 8 September 2022
Tedro on 7 September 2022

Category: Blood tests

Replies: 1

Last updated: 7 September 2022

BCR/ABL1 % (PCR)
by AlastairC (Sep 7)

Hi. There is inherent variability in the test process, so individual results can vary from test to test. 0.0032% (widely used as a limit of detection) is one cell in a little over 30,000. At

by Tedro (Sep 7)

Hi,
Just to be certain:
If someone is eligible to go TFR, with monthly PCR monitoring…
The BCR/ABL1 % from a PCR can go up or down WHILE OFF medication… it seems strange to me that it
Category: Blood tests

Replies: 1

Last updated: 7 September 2022
Tedro on 7 September 2022

Category: Children & young people

Replies: 2

Last updated: 7 September 2022

PCR results
by hannibellemo (Sep 7)

I don't know about all reports but Mayo's lab cut off is 0.003. Your report simply says you have had a complete molecular response (0.000 PCR Undetectible). If that holds true on your next

by hannibellemo (Sep 7)

by Tedro (Sep 7)

hi,
i had not seen a report (attached) that does not state a ratio%.
further, is it true that the lowest ratio% ever given is .0032%, due to machine limit?
does attached indicate MR4.5?
is
Category: Children & young people

Replies: 2

Last updated: 7 September 2022
Libby on 11 June 2022

Category: Side effects

Replies: 3

Last updated: 4 September 2022

Hypertension
by sue. R (Sep 4)

Bosutinib
I started with 100 mg on Aug 10, I felt better like never before. No side effects, blood test normal
14 days later I am on 200mg fells like a truck ran over me and very

by sue. R (Aug 8)

Hi, I am switching onto Bosutinib from Spyrcel - was on for 5 years because of Pleural infusion. Plus breathing issues. I also show undetected.
all blood work perfect
echo ( heart)

by johnw1001 (Jun 13)

Medium and long term it is quite important to control your blood pressure especially for the heart.Exercise is a an approach that might help but perhaps effective medication is usually the solution.

by Libby (Jun 11)

I'm on Bosutinib and have really high blood pressure. My latest reading was 180/100. Has anyone else on bosutinib suffered from hypertension? Before I was diagnosed (4.5 yrs
Category: Side effects

Replies: 3

Last updated: 4 September 2022
jriccoboni on 3 September 2022

Category: Uncategorised

Replies: 2

Last updated: 3 September 2022

Pcr test
by jriccoboni (Sep 3)

Thank you this makes much more sense. I am jsut not used to seeing that reported kind of freak me out! Thanks for the quick response !

by scuba (Sep 3)

If you hover over the "molecular response" text you will read:
Molecular Response
Levels of response to therapy shown by q-PCR testing. MR3 to MR5 are equivalent to

by jriccoboni (Sep 3)

Today my PCR had a new look it with a value that usually isn’t there.

It had two values
international scale%: 0.021
molecular response: 3.68

I have been
Category: Uncategorised

Replies: 2

Last updated: 3 September 2022
Mick E on 28 August 2022

Category: Uncategorised

Replies: 4

Last updated: 2 September 2022

Nilotonib and inflammation
by Mick E (Sep 2)

Totally agree lifestyle is very important, even without this condition! Its very easy to blame meds for all the aches and pains but sometimes we have to take responsibility for self inflicted

by JoeP (Sep 2)

Johnw1001 is right on the mark. Lifestyle affects the impact of side effects of TKI. I was on Imatinib for years and struggled with inflammation issues mostly related to my spine. After coming up

by Mick E (Aug 30)

Thanks for the reply John
My lifestyle is pretty much follows the same advice in your reply. I don’t recall getting a CK blood test so that may be worth checking.
what symptoms do you

by johnw1001 (Aug 30)

Hi
If you look at the side effect profiles of many of the tkis then joint pain,muscle issues and cramp are fairly common especially if one is a long term user.I have non diabetic peripheral
Category: Uncategorised

Replies: 4

Last updated: 2 September 2022
snowman 35 on 29 August 2022

Category: About CML

Replies: 11

Last updated: 2 September 2022

Vitamin K2 and g6pd deficiency
by scuba (Sep 2)

Your link provides a very good list and summary:
Suggested adult doses:
Vitamin C: 500-1000 mg, 3 times daily (more to bowel tolerance if sick)
Vitamin D3: 5000 IU/day (maintain plasma vitamin

by sandy craine (Sep 2)

This is a good overview of vitamins/mineral supplementation. Fueling the immune system for the 21st Century Orthomolecular News
Sandy

by scuba (Aug 30)

Natto every day is a good choice!
but it is hard for me to do 'every' day. Most days I manage when home.

https://www.nyrture.com/blog/natto-and-vitamin-k2

by snowman 35 (Aug 30)

So the best way to have enough K2 from food is eating natto with my lunch every day...I think this is the best way to take up to 200mcg every day
Category: About CML

Replies: 11

Last updated: 2 September 2022
An on 30 August 2022

Category: Uncategorised

Replies: 3

Last updated: 1 September 2022

Life Insurance
by An (Sep 1)

Hi,
I talked to an agent ,it seems there is something called term insurance,but they said they will talk to the company first,some companies give after 6 years past diagnosis and in remission,and

by hannibellemo (Sep 1)

I would be very surprised if anyone could get any type of life or long-term care insurance after diagnosis. I didn't try for life but I did ask about long-term and no-go!

by ColoradoGuy (Aug 31)

I could be wrong but I don't believe you can get life insurance after diagnosis. That may change if, God willing, TKI's start extending life into decades (Not enough time has passed).

by An (Aug 30)

Hi,
A question to US folks,have any of you got life insurance after cml diagnosis?
Category: Uncategorised

Replies: 3

Last updated: 1 September 2022