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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
gbatalha on 11 November 2019

Category: Uncategorised

Replies: 9

Last updated: 11 December 2019

18 months result
by gbatalha (Dec 11)

Need wisdom!
Just got my 19 months results … BCR-ABL and the 0,074% is now 0,078% (which at 32000 samples is ~1 cell).
The lab did not perform mutational analysis given that the

by kat73 (Nov 18)

You did not mention the 35 bp insertion before. That does indeed call for more monitoring, as you have undoubtedly read amongst the studies a Google search will bring up. Your doctor

by RC Kirk (Nov 18)

Hopefully your 18 month PCR result isn't a sign of a problem and your doctor is just being cautious. My PCR scores have also wandered a bit through the years.

2012 118.683%,

by gbatalha (Nov 18)

Hi everyone,
Apologies in coming back to this topic, given the rise in bcr abl my doc ordered me to urgently (today) do a blood test and a new quantification of bcr-abl combined with a new
Category: Uncategorised

Replies: 9

Last updated: 11 December 2019
Vikram on 12 November 2019

Category: Uncategorised

Replies: 6

Last updated: 10 December 2019

IMTINIB (GLEEVEC) and generic
by MartinZA (Dec 10)

Hi all
Very interesting and informative discussion!
My two cents' worth: I have been on several different generics of imatinib and am currently on Mivesta. According to my doctor, this is the

by EvaH (Dec 6)

I have been on generic imatanib made by Teva, Sandoz and one other (I forgot the name)
I had NO difference in results with any of them but I preferred Sandoz because the Teva pills are huge and the

by Nimbus2 (Nov 16)

I raised this matter using the United Kingdom Medicines and Healthcare Products Regulatory Agency (MHRA) Yellow Card scheme. Here is an extract from the MHRA response. My main problem was with the

by Vikram (Nov 15)

Thank you for your reply
Category: Uncategorised

Replies: 6

Last updated: 10 December 2019
jhorne1 on 9 December 2019

Category: Uncategorised

Replies: 2

Last updated: 10 December 2019

Fibrosis
by sisyphus (Dec 10)

Just to offer something of a counter narrative: in my case, it has paid dividends to examine information and ask probing questions.
Had I not noticed and researched the acronyms 'MPD and CML

by Tater1 (Dec 9)

Hi
I did exactly the same thing with fibrosis. My result report stated grade 1 so thought “well if it is a grade at all it’s serious”. But I found nothing on the

by jhorne1 (Dec 9)

All,
Just a reminder to speak to your doctor before you try to interpret labs yourself. Was able to look at my bone marrow biopsy before the doc called me this morning to chat about it. It did
Category: Uncategorised

Replies: 2

Last updated: 10 December 2019
Vijay Kumar Verma on 22 October 2019

Category: About CML

Replies: 10

Last updated: 10 December 2019

PCR@27MONTHS
by David Fitz (Dec 10)

Hi, I would agree that it's not necessarily a good idea to change dose. If you really want to get to MMR ASAP changing drug would probably be the quickest way to do that. But that doesn't

by Felix (Dec 10)

Hi, I wouldn't increase the dose it will only increase the side effects and it's you who has to cope with them not your doc.Why are some docs in such a hurry ,as long as the trend is

by JacqJohn (Dec 10)

Actually I'm also in the same situation. I'm now at 27months into Imatinib and my latest PCT results is still at 0.2% (IS).
It is "steadily" dropping but really at a slow rate.

by ColoradoGuy (Oct 22)

David - That is correct it is on International Scale. I, and everybody else hanging out in CCyR is hoping to eventually cross that 0.1 barrier but I too have read from a number of sources that
Category: About CML

Replies: 10

Last updated: 10 December 2019
jhorne1 on 9 December 2019

Category: Uncategorised

Replies: 3

Last updated: 9 December 2019

TKIs and supporting vitamins
by alexmcpee (Dec 9)

No probs Jon.
I’ve only recently cut out red meat because I used to eat a lot of it and from a digestion point of view it’s hard on the stomach and I know TKIs are tough on the gut so I

by jhorne1 (Dec 9)

Alex, thanks for the info. I've really only cut out red meat and alcohol right now from the diet. I've also been doing smoothie way more to make sure I'm getting the good

by alexmcpee (Dec 9)

Hey,
My specialist said don’t bother, if you get a proper balanced diet you’ll get it all from food.
I’ve seen a long list on this site over the last couple of years.
Circumin (

by jhorne1 (Dec 9)

All,
What additional vitamins are you taking along with your TKIs and why? All I've seen is Vitamin D and Magnesium. What about green tea? I keep reading conflicting info.
Category: Uncategorised

Replies: 3

Last updated: 9 December 2019
Vikram on 24 November 2019

Category: Uncategorised

Replies: 11

Last updated: 9 December 2019

Drug stop working ..... Chances???
by Vikram (Dec 9)

Thanks for reply......
SORRY MY ENGLISH NOT GOOD....
(Age 27)

(diagnosed 2008)(early)

(1,80,000 wbc in cbc) (400 mg dose)

(in 2010) (600 mg dose)

(in 2011 pcr UNDETACTABLE

by AlastairC (Dec 7)

Hi Eva, I understand that doctors are reluctant to deviate from established practice in their different countries. However, there is a significant improvement in my sense of well-being have so far

by MartinZA (Dec 6)

Hi EvaH
Very, very true - I am in South Africa and it is really hard to have these sorts of dosage reduction discussions as there is a great deal of resistance and reluctance to switch patients. I

by EvaH (Dec 6)

Side note to allstair : Docs outside the UK are very very reluctant to do dosage reduction unless there are severe life limiting side effects. I've asked in a few different countries.
Category: Uncategorised

Replies: 11

Last updated: 9 December 2019
starente on 9 December 2019

Category: Getting help

Replies: 0

Last updated: 9 December 2019

Sprycel financial assistance
by starente (Dec 9)

Hi folks
is anyone aware of the maximum adjusted gross income that a patient can have to get assistance from BM? I remember seeing it at one point but can’t find it now. TIA!
Category: Getting help

Replies: 0

Last updated: 9 December 2019
Nimbus2 on 7 December 2019

Category: Uncategorised

Replies: 1

Last updated: 8 December 2019

Trial: Kinase domain mutations using ultra deep next-generation sequencing
by Nimbus2 (Dec 8)

Google has picked up and article that was published only two days ago. It adds some interesting reading on this subject.
https://jhoonline.biomedcentral.com/articles/10.1186/s13045-019-0815-5#Tab2

by Nimbus2 (Dec 7)

Has anyone participated in this trial? All blood from all over the country is sent to King's College Hospital. My mutation tests at my local Birmingham laboratory came back negative. The blood
Category: Uncategorised

Replies: 1

Last updated: 8 December 2019
ShawnJ on 6 December 2019

Category: Blood tests

Replies: 4

Last updated: 8 December 2019

BCR ABL Questions
by alexmcpee (Dec 8)

No worries Shawn,
Yes that must be frustrating. This site is invaluable isn’t it. The thing to take away is don’t worry about your low presentation as we’ve discussed. Think of

by ShawnJ (Dec 8)

David and Alex
Thanks for the replies.
David what I meant by minor was the P190 that alex spoke about. The results are above for that one.
I am frustrated mostly by the lack of knowledge by the

by alexmcpee (Dec 7)

Hi Shawn,
I wondered when I’d see another very low presenting PCR result. I was diagnosed at baseline 13 - 20%. It was so low the test was performed twice to rule out errors. It is unusual to

by David Fitz (Dec 7)

Hi Shawn,
A PCR result (PCR test measures BCR-Abl) of 9.54% is a pretty low result for the first one, but absolutely not unheard of.
However - and this can be the confusing bit - it doesn
Category: Blood tests

Replies: 4

Last updated: 8 December 2019