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Jason Graves on 7 December 2019

Category: Blood tests

Replies: 4

Last updated: 8 December 2019

good news.
by ColoradoGuy (Dec 8)

Awesome! Very happy to hear that. Thank you for sharing.

by mamodei (Dec 7)

Great news! May her platelets get to a good level and stay there.

by alexmcpee (Dec 7)

That’s good news Jason. Stay strong mate through which I know is a shit show of a time. Hoping things become predictable for you all!
Alex

by AlastairC (Dec 7)

Hey Jason that is such good news. Long may it continue.
Category: Blood tests

Replies: 4

Last updated: 8 December 2019
MANNI OBEROI on 5 December 2019

Category: Uncategorised

Replies: 1

Last updated: 6 December 2019

Last tlc is 6100 now 8900
by Aeje10327 (Dec 6)

What are you referring to when you say tlc?

by MANNI OBEROI (Dec 5)

Myself Ramandeep diagnosed 4 months ago.....my last tlc is 6100...and now after a month it is 8900...is there is any problem in that....plz tell thanks in advance
Category: Uncategorised

Replies: 1

Last updated: 6 December 2019
ShawnJ on 22 November 2019

Category: Side effects

Replies: 4

Last updated: 6 December 2019

New Here Short Break from Gleevec
by doulakatiecasey (Dec 6)

It's interesting that you mentioned frequent kidney stones. Before he was diagnosed, my husband has had very frequent kidney stones for a few years and I kept telling him it wasn't normal at

by ShawnJ (Nov 23)

Thank you for the replies. I think some of my throat stuff is anxiety. I have been having a real tough time keeping a level head. I see a therapist soon, hoping it helps.

by mamodei (Nov 22)

I was given a 7 day break from nilotinib about the same amount of time into treatment you are. Like you my blood count numbers had come quickly back to normal ranges but I did not have a PCR

by Aeje10327 (Nov 22)

Hi, I understand your concerns being this early in treatment. I am just a few weeks ahead of you. I had to stop for a week because of neutropenia. My doctor assured me that its common practice early
Category: Side effects

Replies: 4

Last updated: 6 December 2019
Sd on 5 December 2019

Category: Side effects

Replies: 4

Last updated: 6 December 2019

Rash and imatinib
by ThomasS (Dec 6)

I developed a big brown spot on my forehead never did clear up. The Dermatologist said it was just because I was getting a little older. Once I switched to Spycel it went completely away. Of course

by Sd (Dec 6)

Is this pretty common? I am wondering how many others develop this rash? If you have had it, does it resolve eventually? Or did you change meds or dosages?

by Sd (Dec 5)

Thanks David. I do use a moisturizer, but it is a bit more than just dry skin. I don't have it on my face.

by David Fitz (Dec 5)

I’m sure you know this already, but don’t use that cream on your face.
I have used things like diprobase in the past, which is very good for keeping your skin moisturised if it
Category: Side effects

Replies: 4

Last updated: 6 December 2019
doulakatiecasey on 5 December 2019

Category: About CML

Replies: 2

Last updated: 6 December 2019

Introducing myself
by doulakatiecasey (Dec 6)

From what I understand, this was caught early, so? He is not a person who ever goes to the doctor, but he's been getting prepared for a surgery and when they did the standard blood panel, his

by David Fitz (Dec 5)

Hi Katie.
I’ll reply properly when I get a chance, but a change of diagnosis from AML to CML is great news, and you should breathe a big exhale. I’m going to make a guess that he

by doulakatiecasey (Dec 5)

Hello! My name is Katie and I'm from Wisconsin in the USA. (about 2 hours from Chicago). My husband was originally diagnosed with AML in late September of this year and was put on a trial on
Category: About CML

Replies: 2

Last updated: 6 December 2019
David Fitz on 5 November 2019

Category: Getting help

Replies: 11

Last updated: 6 December 2019

CML Management App: Please take 5 minutes to complete this survey - it would really help
by EvaH (Dec 6)

maybe talk to the guy who developed Tasitrack?

by Olivia (Nov 10)

Done.
I think I would have found it more useful soon after diagnosis, but 10+ years on things seem to be going smoothly and I don't worry much about it all.
Olivia

by alexmcpee (Nov 8)

Cool. I’ve taken the Survey.
If interested I’ve been developing apps since 2011 (currently work for a FTSE 100 as an iOS dev) so if you need some consultation for free hit me up at

by Mick E (Nov 8)

Done 😁
Category: Getting help

Replies: 11

Last updated: 6 December 2019
Aeje10327 on 5 December 2019

Category: Uncategorised

Replies: 1

Last updated: 5 December 2019

Starting to worry...
by Felix (Dec 5)

Hi, I got the rash on Imatinib too ,it started as red raised bumps that were quite itchy and hot worse in the summer .I wasn't offered steroids but I would have refused them anyway didn't

by Aeje10327 (Dec 5)

Hi, I was diagnosed this past September with CML and was immediately started on gleevec. Within a few weeks I had to stop secondary to neutropenia. I was eventually able to restart and have been
Category: Uncategorised

Replies: 1

Last updated: 5 December 2019
Blarn on 3 December 2019

Category: Blood tests

Replies: 6

Last updated: 5 December 2019

Interpreting qPCR results
by Lucas (Dec 5)

Hi, david! Hope you're fine!! well, i had the trisomy 8, but it were on PH negative cells (healthy cells). If the trisomy is on PH positive cells, than you have a problem. that's a clonal

by David Fitz (Dec 4)

One of members, Lucas, had a Trimsomy 8 at one point (some years back). If you use the search function on this site and search for “Lucas trisomy” you’ll find his story. I heard

by Blarn (Dec 4)

Thank you all for replies. I didn't know that FISH results were the more important indicator at this stage. Was trying to understand why SCT would be a recommended option, reading about it was

by Antibody Boy (Dec 3)

Blarn, since the complex variant translocation was not observed at diagnosis but was subsequently observed via cytogenetic testing at 3 and 7 months along with trisomy 8 (do you know if your trisomy
Category: Blood tests

Replies: 6

Last updated: 5 December 2019
ThePilotLawyer on 22 October 2019

Category: Side effects

Replies: 1

Last updated: 5 December 2019

Bosulif Itching
by Catherine McC (Dec 5)

Hi Anthony,
Yes I've got very itchy shins! Do you have an actual rash? If you do, you could try using eczema creams which help a bit. My haematologist also gave me an anti-histamine though I don

by ThePilotLawyer (Oct 22)

Has anyone experienced itching on Bosulif and if so, what did you find to help soothe?
Thanks - Anthony
Category: Side effects

Replies: 1

Last updated: 5 December 2019
Tanya Cuffe on 3 December 2019

Category: Uncategorised

Replies: 6

Last updated: 4 December 2019

Dropping Sprycel myself?
by mamodei (Dec 4)

Simple blood test.

by Tanya Cuffe (Dec 3)

Thanks heaps Scuba and David,wonderful advice when I see Haemo in Jan will insist on drop to 20 mg Sprycel if am still reading undetectable.Appreciate the responses and support:)

by Tanya Cuffe (Dec 3)

Thank you very much for yr response Maria,will ask Doc to check my thyroid.Is it checked via blood tests?

by scuba (Dec 3)

Tanya,
I strongly support David's recommendation. I am currently taking 20 mg sprycel - every other day. I am undetectable for several years now. I had thyroid issues a few years ago when I
Category: Uncategorised

Replies: 6

Last updated: 4 December 2019
sisyphus on 3 December 2019

Category: About CML

Replies: 5

Last updated: 3 December 2019

Twitter posts
by Nimbus2 (Dec 3)

I have not seen the Twitter site before. I never use Twitter. But the site's postings are quite a disgrace: highly political, selling and promoting unproven vitamins, supplements and foods,

by sisyphus (Dec 3)

No problem, thought it was worth flagging!
I should reiterate that this website has proved invaluable to me in recent weeks.

by David Fitz (Dec 3)

Thanks Chris.
I don't control access to our Twitter account, but will look into it.
Thanks for raising this.
David.

by sisyphus (Dec 3)

Hi David,
I'm referring to posts/retweets on twitter in recent weeks, which are overtly party political. I agree with the need to engage with politicians of all shades to advance the cause (I
Category: About CML

Replies: 5

Last updated: 3 December 2019
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