TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

You are here

Forum

admin on 2 December 2019

Category: Uncategorised

Replies: 2

Last updated: 13 January 2020

Testing spambot moderation
by admin (Jan 13)

one reply

by admin (Jan 10)

testing reply

by admin (Dec 2)

Testing spambot moderation
Category: Uncategorised

Replies: 2

Last updated: 13 January 2020
chriswells on 25 June 2019

Category: Uncategorised

Replies: 0

Last updated: 25 June 2019

Testing thread deletion process
by chriswells (Jun 25)

Testing thread deletion process
Category: Uncategorised

Replies: 0

Last updated: 25 June 2019
admin on 13 May 2019

Category: Organising your life

Replies: 6

Last updated: 19 June 2019

Liz testing forum notifications
by admin (Jun 19)

admin‍

by admin (Jun 19)

Testing mentions undefined‍

by admin (May 16)

Hi David thanks for testing. I got notified about your reply correctly, this time you should be notified and not me...

by David Fitz (May 16)

Test reply. If this works, I should not get an email notification as I have sent this myself.
Category: Organising your life

Replies: 6

Last updated: 19 June 2019
johnw1001 on 10 May 2019

Category: Side effects

Replies: 0

Last updated: 10 May 2019

Peripheral neuropathy associated with long term imatinib therapy
by johnw1001 (May 10)

Hi All,
Peripheral neuropathy is when there is pain and numbness or tingling felt at the extremities of the body especially hands and feet and is often associated with those who have already
Category: Side effects

Replies: 0

Last updated: 10 May 2019
jmonzione on 9 May 2019

Category: Uncategorised

Replies: 6

Last updated: 10 May 2019

Looking for resources to aid discussion about lowering dose of sprycel
by DawnD (May 10)

Brilliant, Scuba! Right on the money! Love this post!!!!

by AlastairC (May 9)

You could try pointing your Doctors at Prof Richard Clark's papers on the Destiny Trial in UK, to back up the link to the USA work Scuba & RC have posted. The trial involved cutting standard

by scuba (May 9)

Your doctors are 'ignorant'. Low dose does not cause mutations. Low dose may or may not work depending on "you" - the patient. You are unique. Finding the correct dose is what

by RC Kirk (May 9)

I think most oncologists who are clinicians only and not researchers wait until a new practice is approved by an advisory group. The researchers who spend some time in the clinical setting
Category: Uncategorised

Replies: 6

Last updated: 10 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
Mick E on 8 May 2019

Category: Side effects

Replies: 1

Last updated: 9 May 2019

Bosutinib treatments temporarily stopped
by RC Kirk (May 9)

Hi Mick,
Your question is hard to answer. It really depends on a lot of factors. If your body is having a hard time with bosutinib, then perhaps a lower dose of it would be the next

by Mick E (May 8)

Hello all
im currently receiving Bosutinib treatment which has been stopped temporarily due to elevated liver enzymes. How long can treatment be stopped before you are prescribed an
Category: Side effects

Replies: 1

Last updated: 9 May 2019
MattyMartinesSr on 9 May 2019

Category: Uncategorised

Replies: 1

Last updated: 9 May 2019

Sprycel
by scuba (May 9)

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

by MattyMartinesSr (May 9)

Good morning, I've been taking Sprycel 140mg since July 28, 2018. I've been trying to find out if Sprycel contains steriod(s) ?
Category: Uncategorised

Replies: 1

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
Cali48 on 26 April 2019

Category: About CML

Replies: 8

Last updated: 8 May 2019

Cure for CML
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

by Richard42 (May 8)

I've been PCR "zero" for 9 1/2 years, and in TFR for nearly 4 (also zero PCR). No transplant - I took 400mg imatinib for 6 years (one at reduced dose) and hit "

by Roland (May 2)

I have been on Sprycel for almost one year. I have numbness in my hands. Has anyone else experienced this?
Category: About CML

Replies: 8

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
bp3 on 7 May 2019

Category: Treating CML

Replies: 3

Last updated: 8 May 2019

Bosutinib and fasting
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

by scuba (May 7)

What you might do is take your Bosutinib with 1/2 avocado.
Avocado is mostly plant fat and should help "mimic" fasting.
More information here:
https://www.mindbodygreen.com/articles/what-

by bp3 (May 7)

I am very interested in the fasting aspect of treatment.
However, Bosutinib is supposed to be taken with food...what should be done in this case?
Category: Treating CML

Replies: 3

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
Tanya Cuffe on 2 May 2019

Category: Uncategorised

Replies: 12

Last updated: 6 May 2019

Starting Tasigna...
by Tanya Cuffe (May 6)

Thank you so much for all of that and am glad Tasigna is wiorking do well for you,despite the horrid initial side effects!I do hope you can eventually stop treatment,as is the aim of most of us, and

by cmljax (May 6)

Hi Tanya. Joining in a bit late, but for what it's worth, I was Dx in Sep 2016 and started on Tasigna 300 MG 2x/day. Yes the fasting and dosing was a real pain, but I developed an

by Tanya Cuffe (May 4)

Thank you so much,that does make it much clearer in my mind if I do start taking Tasigna.You have not had hair loss or gone into early menopause?You sound well and are busy and coping,so that’

by Niluka Dias (May 4)

Hi Tanya,
i am new to the forum. I have been diagnosed with cml in June last year. Initially I started with Imatinib but switched to Nilotinib in last October. At the beginning, it wasn’
Category: Uncategorised

Replies: 12

Last updated: 6 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
dadbags on 28 April 2019

Category: Uncategorised

Replies: 2

Last updated: 2 May 2019

OFF GLEEVAC
by onekayaker (May 2)

How awesome for you!!! Always good to read good news.

Stephanie

by bendicco (Apr 30)

Good for you!!! I too see someone at Sloan, they are all so wonderful! I remember my bone marrow aspiration, NOT done at sloan, and it was only with a topical , OMG 1000 times worse than

by dadbags (Apr 28)

HI PEOPLE-well its been14months since im off gleevac(great drug my opionion)no CML detected-0.0000-so now its 18years since i was diagnosed in SLOAN KETTERING by my angel DR.NELY CATHCART!ill b 70in
Category: Uncategorised

Replies: 2

Last updated: 2 May 2019