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Nshah on 3 December 2019

Category: Side effects

Replies: 2

Last updated: 3 December 2019

Bcr abl result after 6 months
by Nshah (Dec 3)

Thank you 😊
May we all get a good MMR soon.
Yes I am taking imatinib and i hope hair loss will settle soon.

by alexmcpee (Dec 3)

Hi there,
haha yes that’s a very very good result after 6 months (the guideline are less than 1.0% at 6 months) I am at 0.118% after 19 months. I was late late late chronic phase and thus had

by Nshah (Dec 3)

Hi everyone
well I got my first bcr abl result after 5 and a half months and it is 0.15%, so I wanted to know is it normal, good or very good , depending on your personal experiences. I had 42
Category: Side effects

Replies: 2

Last updated: 3 December 2019
Crfharris on 2 December 2019

Category: Uncategorised

Replies: 6

Last updated: 2 December 2019

Three month BCR/ABL results
by Crfharris (Dec 2)

Thank you so much. Your explanation has given me tremendous comfort. It is such a frightening situation in that with most medical issues you have several friends who have been through the same or

by David Fitz (Dec 2)

“Warning” basically means, “be vigilant, consider other options, but you don’t necessarily need to do anything right now”. The next formal category is “failure

by Crfharris (Dec 2)

I think you are right. When discussing treatments, we considered high blood pressure-which I have, and heart problems that are in my family. My doctor also mentioned the positive downward trend so

by Nimbus2 (Dec 2)

Not everyone is treated in the same way. I have learned that older patients in the UK are more likely to be treated as a starter drug on imatinib. Older patients are more likely to have other
Category: Uncategorised

Replies: 6

Last updated: 2 December 2019
mamodei on 24 November 2019

Category: Side effects

Replies: 13

Last updated: 2 December 2019

Has anyone else had speech difficulty on dasatinib (or nilotinib)
by mamodei (Dec 2)

I did have my first appointment with the speech therapist on Friday, an evaluation with lots of tests. There were two possible outcomes, the first being my speech problems have a neurological

by kat73 (Dec 2)

Just back and catching up here. Yes, yes, yes to the problems described above, and yes to the timing of it being after diagnosis and starting imatinib and then (especially) dasatinib.

by mamodei (Nov 26)

Well that is not reassuring as far as my finding a way to improve my speech while still on the TKI.
Dasatinib does cross the blood brain barrier. https://www.ncbi.nlm.nih.gov/pubmed

by Nimbus2 (Nov 26)

A patient meeting was held in Birmingham England on 9 November where Dr Manjov Raghaven presented and discussed the subject of TKI side effects. The majority of the patients present at that meeting
Category: Side effects

Replies: 13

Last updated: 2 December 2019
koralia.pappi on 1 December 2019

Category: Drug-drug interactions

Replies: 2

Last updated: 2 December 2019

Tasigna + some other pills!
by koralia.pappi (Dec 2)

Hi Kat,
indeed you are correct, allopurinol was started immediately after DX. I agree with you that it could be dropped now, but apparently my doctor doesn't :P
What can you do!! :D
Koralia

by kat73 (Dec 2)

Koralia - This is tough. I'll let others advise, except to say that I have come to separate my levothyroxine from my TKI on general principles, but as I say, others may chime in here.

by koralia.pappi (Dec 1)

Hi all,
I have been on Tasigna for about 6 months. Due to my last blood tests, I had to add a couple of extra pills to my daily routine, and now I'm up to 8 (including the 4 capsules of tasigna
Category: Drug-drug interactions

Replies: 2

Last updated: 2 December 2019
VioS on 28 November 2019

Category: About CML

Replies: 2

Last updated: 1 December 2019

Tasigna side effects, please advise
by VioS (Dec 1)

Thank you for your response,butt i have problems with the prostatitis, rest of the side effects i mention are menageble,i think about to switch nilotinib with a low dose of dasatinib, butt my doctor

by mamodei (Nov 30)

I have had tinnitus on both nilotinib and dasatinib. It was quite bad early on the dasatinib but has come down after a dose reduction. I can live with it at the current level. I

by VioS (Nov 28)

Hello, after 1 year and 8 months on Tasigna 600 mg my last PCR was 0,019,this its good so far, butt i am confrunting with some side effects like constipation, bloating, some gastro reflux, insomnia
Category: About CML

Replies: 2

Last updated: 1 December 2019
Rick B on 26 September 2019

Category: Uncategorised

Replies: 11

Last updated: 30 November 2019

Undetectable in 14 months
by Rick B (Nov 30)

Hi John,
Thanks for checking in. I finished the proton beam therapy 5+ weeks ago, and the side effects began to escalate the last week. I am just beginning to feel better and the doc

by johnw1001 (Nov 28)

Hi Rick ,
Just curious to know how you are doing on the proton beam therapy and presume that you are still on imatinib as well? How is the urethra bearing up?
I have had my surgical intervention of

by Rick B (Sep 27)

Yes. I am still on the TKI. Generally, minimal side effects with the Imatimib, but there are sudden episodes of fatigue, moth sores, etc., but much, much less frequent than in the first

by johnw1001 (Sep 27)

Hi Rick,
It is good to see that you are progressing so well and that you are in to your proton beam therapy as well.I am going to have my targeted radiation therapy within a few weeks and will
Category: Uncategorised

Replies: 11

Last updated: 30 November 2019
Nimbus2 on 27 November 2019

Category: Uncategorised

Replies: 2

Last updated: 27 November 2019

Loss of physical strength
by mamodei (Nov 27)

Like you I was in unusually poor physical condition when diagnosed as I'd spent the winter with low activity due to fatigue and also got sick a couple times and really had trouble recovering.

by Mick E (Nov 27)

That has definitely happened to me even though I have tried to maintain it. I think the main reason is due to the muscle loss we all go through due lack a lack of weight bearing exercise

by Nimbus2 (Nov 27)

I read that person in his/her 30s will start to lose muscle mass to muscle mass. This is apparently called "sarcopenia". A person loses 3 to 5% of his/her mass per decade and may lose 30%
Category: Uncategorised

Replies: 2

Last updated: 27 November 2019
mamodei on 22 November 2019

Category: Blood tests

Replies: 2

Last updated: 25 November 2019

BCR-ABL1 0.08 at 6 months
by koralia.pappi (Nov 25)

Congrats! Great news :)

by David Fitz (Nov 24)

0.08% after 6 months of treatment is stellar! An “optimal” result it anything below 1%, so you are miles below that. In fact you are below the optimal result expected at 12 months.
Quite

by mamodei (Nov 22)

I got great news today. My PCR result is 0.08 at just shy of 6 months on treatment. News like this does help.
I started on nilotinib, but had trouble with side effects culminating in a
Category: Blood tests

Replies: 2

Last updated: 25 November 2019
koralia.pappi on 21 November 2019

Category: Blood tests

Replies: 2

Last updated: 24 November 2019

Eosinophils
by koralia.pappi (Nov 24)

Hi Labros,
Thanks for the reply

:-)
Well, my doctor indeed told me :"you worry too much"!
This woman, she is great, answering all kinds of weird questions, although I can be a pain in the a

by labros (Nov 22)

Hello Koralia,
I don't think you should worry about your eosinophils, since they are still very close to the normal range. My doctor have mentioned to me that increased eosinophils should alert

by koralia.pappi (Nov 21)

Hi all,
I have a quick question about my blood tests. I was diagnosed 6 months ago, and I'm on Tasigna. Last PCR (3.5 months) was 0.32%, which is pretty good. I am now waiting for my results of
Category: Blood tests

Replies: 2

Last updated: 24 November 2019
anonimouse on 14 February 2018

Category: Treating CML

Replies: 41

Last updated: 24 November 2019

Has anybody been able to reduce their dosage of Sprycel?
by kali (Nov 24)

Hello to all,
in response to this thread, I have been on 20 mgm of Sprycel as well for several months and still undetectable!! No side effects and all blood work is normal.
My onc says I am

by Sunny (Nov 24)

Thank you Scuba. You are very knowledgeable, and your responses are always illuminating and very informative.
Especially where I am concerned as I am on Dasatinib myself.
Too bad I can't follow

by anonimouse (Nov 23)

It's been nearly a year since I originally posted and also, stopped taking Sprycel (after a tapering off period of months) after this post at the end of December 2018. I am happy to say

by anonimouse (Nov 23)

It's been nearly a year since I originally posted and also, stopped taking Sprycel (after a tapering off period of months) after this post at the end of December 2018. I am happy to say
Category: Treating CML

Replies: 41

Last updated: 24 November 2019
Alaina on 1 November 2018

Category: Uncategorised

Replies: 10

Last updated: 23 November 2019

Vitamin D...Help!
by scuba (Nov 23)

Anonimouse -
Thank you for the kind words. I read a great deal about Curcumin & vitamin D regarding depression and was surprised at the significant amount of information that was available.

by anonimouse (Nov 23)

Just want to say thank you to you. I read a lot of what you posted about Vit D, K2 and Curcumin and although I was already taking a lot of Curcumin, what really changed my life for the better

by Alaina (Nov 2)

Thank you for the hyperlinks. Great info.

by Alaina (Nov 2)

It is certainly thought provoking for sure.
Category: Uncategorised

Replies: 10

Last updated: 23 November 2019
Mick E on 15 November 2019

Category: Uncategorised

Replies: 14

Last updated: 22 November 2019

Nilonotib and pancreas/stomach issues
by Mick E (Nov 22)

That’s a very thorough service they did while they were in there!
It must have been a huge relief getting some relief from all the associated problems it caused!!
Mick

by David Fitz (Nov 22)

Hey Mick,
Me too ... GERD was pre-CML but I managed it with PPIs and that worked fairly well to be honest.
When they opened me up, they found it was a case of having a pretty loose connection

by Mick E (Nov 21)

David the information is worth knowing as I may have been suffering GERD symptoms prior to being diagnosed with leukaemia. Hopeful to get some clarification on the cause of that soon.

by David Fitz (Nov 21)

Mick, I lost nearly 20kg (I’m not a big guy to begin with) so have made many a joke about the leukaemia diet over the years!
It wasn’t a complicated procedure, but it was a fairly major
Category: Uncategorised

Replies: 14

Last updated: 22 November 2019
Anya226 on 20 November 2019

Category: About CML

Replies: 3

Last updated: 22 November 2019

Tasigna and skin rash
by alexmcpee (Nov 22)

Hi there,
I’ve been on Tasigna for 19 months and yes you will get little red pimples at the hair follicle. I have them on my scalp, arms and legs and other areas. It doesn’t itch and is just

by Naj (Nov 21)

Hi Anya,
I have been also taking Tasigna since Jan 2017 ( was diagnosed on Dec 2016).

After first couple months I also had severe rash ( underneath my arms, at backs, crouches..) , very itchy

by cmljax (Nov 20)

You probably have either petechiae or folliculitis or both. I had both and still have mild folliculitis on my scalp even though my dose is now down to 150 mg/day. There are simple

by Anya226 (Nov 20)

I have been on tasigna for 3 weeks and developed a rash the first week. My docv is aware and because it is not that uncomfortable he said to continue with the medication and to monitor the rash but
Category: About CML

Replies: 3

Last updated: 22 November 2019
Sharon7 on 19 November 2019

Category: Treating CML

Replies: 9

Last updated: 22 November 2019

Frequency of blood tests for newly diagnosed
by Sharon7 (Nov 22)

Hi there,
Thanks so much for the Tasigna info and references. I had a gut feeling that leaving his blood test for a month was too long and I decided to just book him in with our GP to get bloods

by Sharon7 (Nov 22)

Hi Kat,
I wouldn't have thought to ask about how low the specialist would be prepared to go before he stops meds. As you said, that will save us worrying even more if his numbers continue to fall

by RC Kirk (Nov 21)

Hi Sharon, Here's a quote from the prescribing information for Tasigna: https://www.google.com/url?sa=t&rct=j&q=&esrc=s&source=web&cd=1&ved=2ahU...
5 WARNINGS

by kat73 (Nov 21)

That's good news, Sharon. Be prepared for the numbers to go even lower for awhile. A good thing to do in order to forestall anxiety is to ask your onc what the parameters of safety
Category: Treating CML

Replies: 9

Last updated: 22 November 2019
Sharon7 on 19 November 2019

Category: Uncategorised

Replies: 4

Last updated: 21 November 2019

Hello new member here
by Sharon7 (Nov 21)

Hi Mark,
Thanks for responding to my first post and for your kind and encouraging words. We have been through a rollercoaster of emotions and things are starting to settle and we are getting used

by Sharon7 (Nov 21)

Hi Dusty,
Thanks for responding to my first post. We definately feel in a better place being a part of this group with so much information available and we truly appreciate the valuable support. It'

by MarkP66 (Nov 20)

Hi Sharon
I am so sorry to hear of your husbands diagnosis and the hurt your family are going through.
As a newly diagnosed member to this site 4 months ago I feel for you and your

by Dustylloyd (Nov 19)

Hi Sharron and family, just read your story involving your husbands recent diagnosis and confirmation of having Cml, every thing you described was as if probably 99% of us “members” had
Category: Uncategorised

Replies: 4

Last updated: 21 November 2019
Jenny9391 on 19 November 2019

Category: Uncategorised

Replies: 2

Last updated: 20 November 2019

Stem cell transplant is a definate!
by Jenny9391 (Nov 20)

Its tough! But you plod along and get on the best you can. Thankyou very much also hoping if you need one you are matched and all is well in the end. Fingers crossed its a speedy recovery

by Mick E (Nov 19)

Really sorry to read about you daughters current situation. It’s hard enough seeing your children have to endure minor ailments so you and all the family must be really going through it

by Jenny9391 (Nov 19)

So my daughter is definatly having a stem cell transplant within the next month to 6 weeks. Both imatinib and disatinib have failed to bring the disease under control with both bcr abl and fish
Category: Uncategorised

Replies: 2

Last updated: 20 November 2019
MarkP66 on 20 November 2019

Category: Treating CML

Replies: 10

Last updated: 20 November 2019

Advice on reaching CMR
by MarkP66 (Nov 20)

Many thanks Scuba. I really appreciate it for taking the time to explain the details.
Hopefully I will have the latest results by Friday and will report on the PCR results.
Have a great

by scuba (Nov 20)

When you have your labs in front of you, report what it says regarding "bcr-abl" (PCR) and/or FISH. Your CBC blood counts look fine (which is why you are not "sick").
During

by MarkP66 (Nov 20)

Hi
I’m not local to home at the moment but from memory the PCR was 38%. I am not sure if the FISH test ? I had a BCR Abl test from bloods at the start of my diagnosis which seems to take

by scuba (Nov 20)

Hi Mark,
What are your lab results in terms of PCR and FISH?
Reporting your actual lab results here can better inform us on what you should expect.
FISH is reported as a percentage of cells under
Category: Treating CML

Replies: 10

Last updated: 20 November 2019
bendicco on 19 November 2019

Category: Blood tests

Replies: 2

Last updated: 19 November 2019

Should I worry?
by bendicco (Nov 19)

Thank you Kat! Thank You!

by kat73 (Nov 19)

Major molecular response (MMR, or MR3) is 0.1. You are a couple of logs' worth beyond (below) that, congratulations! In many labs, your number would not even be reported - they would

by bendicco (Nov 19)

Hi all. I see a doc at Sloan in NY . Six months ago my CML bloods registered 0.002 then three months ago it was not detectable. I was so excited! Had my bloods drawn again last week and just
Category: Blood tests

Replies: 2

Last updated: 19 November 2019
Simon Allchin on 18 November 2019

Category: Treating CML

Replies: 2

Last updated: 19 November 2019

What are the highs and lows of a stem cell transplant?
by Simon Allchin (Nov 19)

Thanks, will read the link this evening. Haven’t given up on TKIs yet, still part of an Asciminib trial and will also try Basutinib if the former is too unkind. Already been pulsing for two

by scuba (Nov 19)

No sugar coating:
https://www.nature.com/articles/s41409-019-0624-z
"Death after hematopoietic stem cell transplantation: changes over calendar year time, infections and associated factors

by Simon Allchin (Nov 18)

Looking increasingly likely none of the TKIs are going to be kind enough to my good blood cells to allow me to continue treatment with them so was just wanting to hear the experiences of anyone who
Category: Treating CML

Replies: 2

Last updated: 19 November 2019
Ghraut70 on 15 November 2019

Category: Reproductive health

Replies: 4

Last updated: 17 November 2019

Swollen lymph nodes
by Ghraut70 (Nov 17)

Hi Martin,

Thanks so much for your response and yes please I would like to have the articles. My email address is rautgeraldine@yahoo.com.

it so unfortunate that I developed swollen

by Ghraut70 (Nov 17)

Thanks so much Alex.

by MartinZA (Nov 16)

Hi there
I am the patient who developed swollen lymph nodes on Sprycel. They kept growing and eventually were the size of golf balls.
There is definitely a link to swollen lymph nodes and dasatinib

by alexmcpee (Nov 16)

Hi
Their is defo a link with swollen Lymph Nodes and Sprycel. I have a CML friend who was on Sprycel and was taken off as they appeared to enlarge the nodes. It’s rare but best to be mindful
Category: Reproductive health

Replies: 4

Last updated: 17 November 2019