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MartinZA on 19 December 2019

Category: Treating CML

Replies: 6

Last updated: 20 December 2019

80% reduction in BCR-Abl
by scuba (Dec 20)

I do - some weights, mostly cardio (HIIT).
It's a myth fasting erodes muscle mass. During a fast, the body requires about 4 grams of glucose a day to maintain a bare minimum of circulating

by Mick E (Dec 20)

Scuba
do you do any physical training at all? I’m interested to how fasting can affect the bodies ability to retain muscle mass.

regards
Mick Ellison

by scuba (Dec 20)

The first fast is the toughest because your body likely never had to "manufacture" ketone making enzymes before. So when you deprive your body of carbs (food in general), the metabolic

by MartinZA (Dec 20)

Scuba, thanks so much for this tip!
I'm going to try it this weekend and let you know what happens. I have bought the ketone strips but didn't bother using them because I couldn't reach the 48
Category: Treating CML

Replies: 6

Last updated: 20 December 2019
AliceN on 19 December 2019

Category: Treating CML

Replies: 3

Last updated: 20 December 2019

Calcium deficiency
by scuba (Dec 20)

HI Alice,
All TKI's affect our electrolytes - Na, K, Mg and Ca. Na and K are very easy to obtain through diet, sometimes too much and are not usually a problem - but Mg is more difficult to

by AliceN (Dec 20)

Hello and thank you,
My vitamin D is ok, it has been on the low side from time to time but mostly ok. I think you are correct in that vitamin D is an important contributor to Calcium levels.

by RC Kirk (Dec 20)

Hi Alice,
I looked back at my test results and calcium levels seem to have been stable for me.
Do you know what your vitamin D level is? If it's low, I've heard it can cause problems

by AliceN (Dec 19)

I was diagnosed in 2017 and been on imatinib since then. I'm tolerating the imatinib pretty well but my gp is concerned about low calcium levels. Does anyone have any experience or problems with
Category: Treating CML

Replies: 3

Last updated: 20 December 2019
FancyNancy on 18 December 2019

Category: Children & young people

Replies: 12

Last updated: 19 December 2019

Newly diagnosed with cml
by FancyNancy (Dec 19)

Kirk,
Ahh yes the memory issue. I have that as well. Posting is a great idea.
My platelets are 1302
Nancy

by RC Kirk (Dec 19)

Hi Nancy,
I keep a record of my CML journey on my LLS profile page so I can quickly look up my history. My memory isn't what it used to be.
Also, it allows my fellow forum members to see

by FancyNancy (Dec 19)

Great hearing your story, David!!
And thanks so much for sharing the other resources. Extremely helpful to my husband (Mark) and I.
I'm so glad things are going well for you now.
Nancy

by FancyNancy (Dec 19)

Hey Kirk,
Heinrich is down by the river now. There are 2 buildings. Bldg 1 and bldg 2. it almost reminds me of a Dr. Seuss story. Lol
I've been on Imatinib for 2 weeks and so far have been doing
Category: Children & young people

Replies: 12

Last updated: 19 December 2019
koralia.pappi on 17 December 2019

Category: About CML

Replies: 3

Last updated: 19 December 2019

Christmas present - MMR!
by MartinZA (Dec 19)

Wow that's wonderful news! Onwards and downwards!
With regards from South Africa
Martin

by VickyK. (Dec 17)

That's great Koralia!!!! Congratulations!!!Merry Christmas to you and your family!!!

Best

Vicky

by mamodei (Dec 17)

Wonderful news, Merry Christmas!

by koralia.pappi (Dec 17)

Hi all,
Just on the 6-month mark on Tasigna, I reached MMR :-)
May 58%
Sep 0.32%
Nov 0.092%
The feelings that these news bring are amazing :-) Onwards to better results!
Thanks to all of you
Category: About CML

Replies: 3

Last updated: 19 December 2019
jriccoboni on 19 December 2019

Category: Uncategorised

Replies: 2

Last updated: 19 December 2019

New drug
by MartinZA (Dec 19)

Thank you for posting this - I have long been wondering what progress is being made with asciminib! Hopefully the research continues and there is even more to come in the future.

by RC Kirk (Dec 19)

It looks like they've been testing this one for at least five years now. Hopefully it's a keeper and will benefit us all.
Here's a link to some more links about ABL001 (Asciminib

by jriccoboni (Dec 19)

Wanted to share this article with everyone. Good news it sounds like with a new drug with less side effects.

https://www.sahmri.org/precision-medicine-theme/news-278/?fbclid=IwAR0
Category: Uncategorised

Replies: 2

Last updated: 19 December 2019
Mick E on 11 December 2019

Category: Uncategorised

Replies: 8

Last updated: 18 December 2019

Nilonotib update
by Mick E (Dec 18)

Hello TJ
im now on 2nd month of Nilonotib and this is the 1st month of 300mg once daily. This is my 4th TKI and Dasatinib was causing pulmonary hypertension so had to come off it. I

by TJ.B (Dec 18)

Hi Mick, how long did you say you were on Nilotinib now ? Would it be worth switching again? my consultant is going to swap me to Dasatanib if my levels rise on 150 twice daily . As you say it

by Mick E (Dec 17)

I shan’t forget those cramps on imatinib! My wife nearly wetting herself laughing at me prostrate on the floor and the lifeguards at the swimming pool running around like a scene from

by Jens (Dec 17)

My doctor did not say anything about not taking nilotinib at night but I guess as always check with your doc. I took imatinib at night, my doctor said it was ok. Good that the joint pain is less
Category: Uncategorised

Replies: 8

Last updated: 18 December 2019
MANNI OBEROI on 17 December 2019

Category: Uncategorised

Replies: 3

Last updated: 18 December 2019

MY RT PCR RESULTS
by David Fitz (Dec 18)

In terms of treatment response and survival, none really. MMR (0.1%) is the “safe haven” zone. If you keep taking your pills and your result never changed you are still doing great.
Over

by MANNI OBEROI (Dec 18)

Thanks alot david.....how many more goals to achieve

by David Fitz (Dec 18)

PCR results on international scale of 0.10% means you are at exactly MMR, which is the primary goal of any CML treatment.
Congratulations!
David.

by MANNI OBEROI (Dec 17)

Hi all I am ramandeep....34 from india.....my Rt pcr results after 4 months are below........p210 bcr abl rearranged copy 18......p190 bcr abl copy number 0.......ABL COPY NUMBER 11099......
Category: Uncategorised

Replies: 3

Last updated: 18 December 2019
Vasile Balc on 17 December 2019

Category: Uncategorised

Replies: 3

Last updated: 17 December 2019

Recently diagnosis with LMA
by David Fitz (Dec 17)

Hi Vasile,
I’m afraid the expertise on this site are for CML, which is quite different and treated differently to AML.
Macmillan have a discussion forum here which might help you, and there

by Vasile Balc (Dec 17)

I am from Romania
My diagnosis is : Acute myeloid leukemia

by David Fitz (Dec 17)

Vasile,
Are you from a French speaking country? LMA (AML in English) is an acute leukaemia, not a chronic one like CML (or LMC in French).
If that’s wrong, what do you mean by LMA?
David

by Vasile Balc (Dec 17)

Hi !
i am so confused what i need to do or where i need to go ! Please help me !
Category: Uncategorised

Replies: 3

Last updated: 17 December 2019
DKurup on 29 July 2019

Category: Treating CML

Replies: 1

Last updated: 17 December 2019

No more Sandoz, Others cause side effects, Whats next?
by Julia.K (Dec 17)

Hi there, I am in the same situation, after discontinuation of Gleevec in 2014, I have been taking various generics, now I've lost MMR, no way to get Sandoz in my country though. What do you

by DKurup (Jul 29)

Hi,
Quick background: I had CML since May 2015, now, 39 yrs, was on Glivec 400 initially, gained MMR within 4 months, reduced side effects after first 6 months.
After first 2+ yrs on Gleevec, NHS
Category: Treating CML

Replies: 1

Last updated: 17 December 2019
Tanya Cuffe on 2 May 2019

Category: Uncategorised

Replies: 14

Last updated: 16 December 2019

Starting Tasigna...
by Tanya Cuffe (Dec 16)

Dear friend,I never began Tasigna,switched from Glivec to 50 mg Sprycel and am doing very well on it.Many go well on Tasigna too there should be others here who can give you info.I hope you get well

by Julia.K (Dec 16)

Hi Tanya, do you still visit this forum sometimes? I wonder how is your Tasigna story, as I am about to start it. Would be happy to hear from you.

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
Category: Uncategorised

Replies: 14

Last updated: 16 December 2019
Tanya Cuffe on 12 September 2019

Category: Uncategorised

Replies: 21

Last updated: 16 December 2019

Non detectable-Yay!Now what?
by Tanya Cuffe (Dec 16)

Wow!thats awesome news,Denise and congratulations!!!I hope and pray you will be able reduce dose further as well!Let us know how you go and may you have a Merry Christmas too and a Blessed New Year!

by AlastairC (Dec 16)

Denise I'm really happy to hear you're back to undetectable. Great news.

by scuba (Dec 15)

Zero side effects you can "feel" is good. We don't know what side effects are going on that you do not feel.
It is worth bringing up with your doc on the new data suggesting lower

by Felix (Dec 15)

Hi,my Doc was very insistent I go on 100 mg Dasatinib at the start but having read what Scuba had to say and all the information he provided I stuck to my guns and said no I wanted a lower dose .She
Category: Uncategorised

Replies: 21

Last updated: 16 December 2019
cauditek82 on 16 December 2019

Category: Uncategorised

Replies: 1

Last updated: 16 December 2019

What vaccinations do we need for our CML?
by Nimbus2 (Dec 16)

A specialist nurse at my doctors surgery, believing (incorrectly) that I was vulnerable to infection, produced a list of seven injections she thought I should receive. This list included various

by cauditek82 (Dec 16)

Have you discussed what vaccines do we need to be protective against infections with your CML expert? What did he or she told you?
Category: Uncategorised

Replies: 1

Last updated: 16 December 2019
Tanya Cuffe on 13 December 2019

Category: Uncategorised

Replies: 2

Last updated: 13 December 2019

Quick question,friends
by Tanya Cuffe (Dec 13)

Thanks,Kat,however am really feeling crook but probably the mind isn’t helping!Am not going to take pill until usual dose tonight..Thanks heaps for your quick response.Its great to be able

by kat73 (Dec 13)

Doubt seriously travails are due to missed pill. Mind games, I fear! The mind is VERY strong, and you feel shock, remorse, shame, and fear over your mistake. But it's just one

by Tanya Cuffe (Dec 13)

I missed my nightly dose of Sprycel for the first time and following day cannot believe how unwell I feel.Shocking headache,nausea,sweats and fatigue,just from one missed pill!Why is this and is
Category: Uncategorised

Replies: 2

Last updated: 13 December 2019
StuartK on 12 December 2019

Category: Treating CML

Replies: 4

Last updated: 13 December 2019

Just started Imatinib
by StuartK (Dec 13)

Hi Alex
Mine is more of a rash, not raised or dot like and it's pretty much everywhere on my torso legs and now arms. More alike to a heat rash without the heat, however so far it's not

by alexmcpee (Dec 12)

Hi Stuart,
I’ve been on treatment for 20months and I have small red raised pimples at the hair follicle on my upper arms, upper legs and some other parts. It’s Folliculitis and you can

by StuartK (Dec 12)

Hi David
Thanks for replying. I think it's just a reaction rash and should fade, its mentioned in my imatinib fact sheet. It doesn't look like any of the pictures I looked at, even for mild

by David Fitz (Dec 12)

Hey Stuart, there are no frauds when it comes to CML. If you have it, I'm afraid to tell you that you are not a fraud! You really have CML, you really have cancer and that's the end of that
Category: Treating CML

Replies: 4

Last updated: 13 December 2019
VioS on 12 December 2019

Category: Reproductive health

Replies: 2

Last updated: 12 December 2019

CML and Fertility
by VioS (Dec 12)

Yes, exactly whatt i was loking for, Gianatonio Rosti, many jokes in his spech,thank you very much David!!!

by David Fitz (Dec 12)

That sounds like Gianantonio Rosti. Lovely guy and always very funny in person - a real CML expert. I'll see what I can dig out. I don't recall him doing a speech about fathering children on

by VioS (Dec 12)

Helo David, you send my into a previous post a coment with a link to a video where a italian CML specialist speaks about fathering child on TKI, please if you still have it put it here, i need
Category: Reproductive health

Replies: 2

Last updated: 12 December 2019
nk_godvani on 12 December 2019

Category: Uncategorised

Replies: 1

Last updated: 12 December 2019

PCR fluctuating
by David Fitz (Dec 12)

Totally normal.
You are at MR4, virtually. PCR is not an exact science, and if you test the same blood twice you will get two different results.
You're doing great!
David.

by nk_godvani (Dec 12)

Hello

I am on imatinib since diagnosis. Recent PCR is 0.013 IS @42 months
@18 month-undetactable

21 month - 0.022

24 month - undetactable

27 month - undetectable

33
Category: Uncategorised

Replies: 1

Last updated: 12 December 2019
RB on 12 December 2019

Category: Food & fitness

Replies: 4

Last updated: 12 December 2019

Xmas Food!
by RB (Dec 12)

Haha! Thank you! Merry Xmas and happy new year to you too!

by Felix (Dec 12)

Hi, only 6 mince pies ,you on a diet ,haha ,go for it and enjoy every last crumb.Merry Christmas and Happy New Year .

by RB (Dec 12)

Hi David,
Thanks very much for your message. Very helpful information. I think, when first diagnosed, I felt that so much of my life and course of my illness was out of my control that it felt

by David Fitz (Dec 12)

Hi RB,
People overthink this one all the time. Stick clear of grapefruits and grapefruit juice.
You'd have to eat an emornous amount of pomegrante to cause a problem. Stick clear of 100%
Category: Food & fitness

Replies: 4

Last updated: 12 December 2019
Ron M on 12 December 2019

Category: Uncategorised

Replies: 1

Last updated: 12 December 2019

Confused!!!
by cmljax (Dec 12)

The increase in November is surprising. I think your doc increased your dose to 70 mg too quickly - should have done one more PCR this month to confirm rising trend. Dosing is very much an

by Ron M (Dec 12)

Hello All,
One of my friend suggested me to post my situation in this forum. I am new to this. Diagnosed in April 2018, Started Sprycel 100 mg. Got MMR in 12 months. Then the the problems started,
Category: Uncategorised

Replies: 1

Last updated: 12 December 2019
Fillette on 3 December 2019

Category: Blood tests

Replies: 3

Last updated: 11 December 2019

Imatinib not working
by David Fitz (Dec 11)

Oh my goodness ... that is a massive difference. Congratulations - I’m thrilled for you. I know availability of TKIs other than imatinib is very difficult in Rwanda so I am so happy for you to

by Fillette (Dec 10)

Hi Evah,

Good to know there is someone from Rwanda on this platform and Thank you for reaching out.
After an investigation with the doctors and the pathologists, it turns out the

by EvaH (Dec 6)

hey there
I was diagnosed in Rwanda too and was recently out the hospital in Eastern Province! I know that some of the machines in Rwanda arent very sensitive to high counts or high PCR, or at least

by Fillette (Dec 3)

Hi Everyone,
I went to the Doctor last 2 weeks and he suggested that I reduce the dose to 200mg (I normally take 400mg Glivec) because my WBC was low. He also sent me to the Lancet
Category: Blood tests

Replies: 3

Last updated: 11 December 2019
Tater1 on 4 December 2019

Category: About CML

Replies: 14

Last updated: 11 December 2019

Introduction and Thank You
by David Fitz (Dec 11)

Wow, that’s amazing to hear. I have no idea how many people have seen that video but I’m really pleased to hear it gave you some comfort.
If you want to read about other CML patients

by kat73 (Dec 11)

Thank YOU. My best Christmas present, to know any words of mine have helped.

by Tater1 (Dec 11)

Believe it or not, this video comforted me in the hospital the night I was diagnosed. It must have been 3 am when I saw it and was able to put my phone down and sleep. Thank you!

by Tater1 (Dec 11)

Hi kat73,
Yes, yes, all of what you said! I asked my husband to read your response because it is so accurate to how I’m feeling. Thank you so much. I’ll come back to
Category: About CML

Replies: 14

Last updated: 11 December 2019