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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
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