TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

You are here

Forum

jason77 on 27 August 2018

Category: Blood tests

Replies: 10

Last updated: 1 October 2018

Rising FISH %
by Poppert (Oct 1)

Sounds like the right thing to do. I did a ”mutation analysis” too, I didn’t have to wait too long for the results. It seems your old doctor did a lot of strange things.

by jason77 (Sep 29)

Hey Scuba, He didnt prescribe a new med yet, wants the results first to make sure I dont have a T135 mutation. I asked about sprycel and he is receptive at starting on 70 mg and go from there. Thank

by scuba (Sep 29)

Did your new doctor start you on a new drug in the mean time?

by jason77 (Sep 28)

Saw the new Dr today and he has ordered a series of mutation tests and PCR. He was in disbelief that the old dr never tested for mutations or any follow up PCR since dx .I was dx last september and
Category: Blood tests

Replies: 10

Last updated: 1 October 2018
gautamjaiswal on 29 September 2018

Category: Children & young people

Replies: 1

Last updated: 30 September 2018

http://www.youngcmlforum.com
by Sid35 (Sep 30)

Thank you Mr. Jaiswal for sharing the information. I believe this new forum will help thousands of young cmrs in India. I am fascinated by how the members of cmlsupport.org support each other with

by gautamjaiswal (Sep 29)

Any friends from India, under the age of 40 years, who are suffering from CML can join the http://www.youngcmlforum.com forum to get their CML related queries answered. An initiative by R.P.
Category: Children & young people

Replies: 1

Last updated: 30 September 2018
chloe870 on 28 September 2018

Category: Treating CML

Replies: 0

Last updated: 28 September 2018

Bring Awareness to Blood Cancer
by chloe870 (Sep 28)

Hi everyone, I have recently been diagnosed with CML and was in complete shock for the first few weeks. I never knew much about blood cancer or the signs/symptoms. When I was waiting for my
Category: Treating CML

Replies: 0

Last updated: 28 September 2018
Karinne on 26 September 2018

Category: Uncategorised

Replies: 4

Last updated: 27 September 2018

PE is back....
by kat73 (Sep 27)

I have had a similar story to yours, Karinne. I've had several PE's, and I've never had any obvious symptoms with them. I could not stay off the Sprycel long enough to get COMPLETELY,

by sandy craine (Sep 27)

Bosutinib is popular amongst CML clinicians here in the UK due to its efficacy as well as its side effect profile. That is not to say it does not have the potential for serious side effects, but it

by Karinne (Sep 26)

Thanks David. Do you have infos on Bosutinib?

by David Fitz (Sep 26)

Hi Karinne,
It sounds like you have had a tough time. To me, this sounds like you should switch - your PCR is excellent. Why not bosutinib? It seems to have a lower side effect profile than
Category: Uncategorised

Replies: 4

Last updated: 27 September 2018
Olivia on 26 September 2018

Category: Uncategorised

Replies: 3

Last updated: 27 September 2018

Make blood cancer visible
by J. HY Wong (Sep 27)

It is nice to hear patients in the UK could be well supported, I sure hope HK could renew its medicine regime ASAP and include 2nd generation TKI into its public healthcare system. Taxes are

by sandy craine (Sep 27)

UK patients do not have to pay for healthcare at the 'point of need'. So we, as CML patients are very fortunate not to have to pay for expensive TKI therapy or any other treatment. We do have a

by J. HY Wong (Sep 27)

Just wondering, how CML patients are treated, in terms of social benefits, in the UK? Sprycel is utterly expensive and is not fully covered in Hong Kong's public medical services, I am planning to

by Olivia (Sep 26)

Yesterday I went to the installation, which some of you may have read about, made by the Make Blood Cancer Visible organisation. It is very well sited in Edinburgh, just next to Princes Street
Category: Uncategorised

Replies: 3

Last updated: 27 September 2018
ramesh kadaru on 27 September 2018

Category: Treating CML

Replies: 1

Last updated: 27 September 2018

BCR-ABL1IS-QUANTITATIVE TEST RESULT
by sandy craine (Sep 27)

Hi Ramesh,
I have some questions:
Given your father has had CML for 25years, can I ask how he has been treated before he was given imatinib (6 months back)?
I assume the PCR test result you quote as

by ramesh kadaru (Sep 27)

Hi My Dad was diagnosed CML 25 years back, he is now 73 years old. He was using Imatinib 6 months back and during the BCR-ABL1IS-QUANTITATIVE TEST RESULT BCR-ABL1 IS -NCN
Category: Treating CML

Replies: 1

Last updated: 27 September 2018
jriccoboni on 26 September 2018

Category: Treating CML

Replies: 7

Last updated: 27 September 2018

PCR test after 1 month of treatment
by sandy craine (Sep 27)

Give yourself and your body some time. You only started therapy 4 months ago and looks like your response is good, so you can at least comfort yourself with the knowledge that you have responsive

by J. HY Wong (Sep 27)

50mg, I have started on 100mg, but because of the immunosuppression my doctor authorized me with 50mg -- and I keep taking 50 to this date. I have been keeping up the exercises, but still not

by scuba (Sep 27)

What dose are you on currently?

by J. HY Wong (Sep 27)

I started four months ago and I got 6% after two months, I think you are in great shape. But even sprycel 50mg is still causing fatigue, I wonder if 20mg could work.
Category: Treating CML

Replies: 7

Last updated: 27 September 2018
autadesiddharth on 21 September 2018

Category: Treating CML

Replies: 1

Last updated: 26 September 2018

Managing thrombocytopenia
by David Fitz (Sep 26)

Hi there,
I’m really sorry nobody has been able to give you any good answers. Food and blood counts are really not that related. We’d all like to earn some special food to boost our blood

by autadesiddharth (Sep 21)

My mother has been in the Blast Crisis for 6 months now. She was currently taking 50mg Dasatinib on an alternate day after few rounds of chemotherapy failed to get her into remission.
She has also
Category: Treating CML

Replies: 1

Last updated: 26 September 2018
hannah2010 on 21 September 2018

Category: Uncategorised

Replies: 3

Last updated: 26 September 2018

Unsure what to do
by sandy craine (Sep 26)

Dear Hannah,
Firstly, congratualtions on your pregnancy. I am not sure if you are treated here in the UK, but you are right to question the 'locum consultant" and his rather unsympathetic

by hannah2010 (Sep 22)

Hi martha
thanks for your reply, may I ask what your bcr abl levels did whilst off the treatment?

Hannah

by Martha Stuart-Berrisford (Sep 21)

Hi Hannah,

Congratulations on your pregnancy. I have had CML for 10 years now and had three pregnancies since. I managed to have two of my children at full term, 42weeks and breastfeeding

by hannah2010 (Sep 21)

Hi
you may have read my post back in June regarding pregnancy and that I had dropped my nilotinib in may this year.
i am currently nearly 23 weeks pregnant now, but received a call from a locum
Category: Uncategorised

Replies: 3

Last updated: 26 September 2018
DawnD on 21 September 2018

Category: Uncategorised

Replies: 4

Last updated: 24 September 2018

So let the ride begin?
by DawnD (Sep 24)

I can’t thank you enough Scuba. I am learning quickly. I am gonna tell the hemotogist about you and Dr Cortes and see what she says. I am ready to do the 20 mg. I may need a second opinion if she is

by scuba (Sep 24)

Dawn,
Actually - I have a suspicion that Sprycel is going to work excellent for you. But you need to start back with a much lower dose. I was on / off/ on Sprycel until my blood counts stabilized.

by DawnD (Sep 24)

Thanks Phillip . I so appreciate your reply.

by Philiptibbs (Sep 23)

Keep your head high and never give up. Maybe try Gleevec . I've tried Gleevec , Sprycel and Tasigna and Gleevec has less side effects for me. It might work for you too. Ask your Oncologist his
Category: Uncategorised

Replies: 4

Last updated: 24 September 2018
Mike1523 on 24 September 2018

Category: Side effects

Replies: 1

Last updated: 24 September 2018

imatinib side effects
by sandy craine (Sep 24)

Hi Mike and welcome,
You describe a set of side effects that many of us have experienced from imatinib. I am not confident in suggesting you lower your dose as I do not know how your particular

by Mike1523 (Sep 24)

I don't have CML but I am told it is rare but similar to it. I have been diagnosed with a condition called myeloproliferative neoplasm with a PDGRFRB rearrangement. My condition responds very well
Category: Side effects

Replies: 1

Last updated: 24 September 2018
chloe870 on 10 September 2018

Category: Drug-food interactions

Replies: 7

Last updated: 24 September 2018

Fasting on Nilotinib
by chloe870 (Sep 24)

Thank you to both of you for all your insight and information. I really hope my journey is as positive as both of yours.

Many thanks

by alexmcpee (Sep 12)

Hi again Chloe,
I had a complete haematological response (chr) in about 3 weeks! This means all my blood levels were normalised. And have been normal for 5 months truly amazing drugs.
I recently had

by cmljax (Sep 12)

I reached MMR in 90 days and my current level of <.003% in 180 days and have maintained that level of response for the past 17 months. The dose reductions occurred from 5 months through 12

by chloe870 (Sep 11)

Hi Cmlijax,
Thanks for your reply. It’s great that you are now down to one tablet a day. Fingers crossed I end up the same way. I’m currently on 2 x 300mg a day, so fasting in the morning and
Category: Drug-food interactions

Replies: 7

Last updated: 24 September 2018
pai5zg on 15 June 2018

Category: Getting help

Replies: 3

Last updated: 23 September 2018

Running and CML
by Philiptibbs (Sep 23)

I put you guys at the top of my list ! You are amazing that you keep going. I'm a bodybuilder and since I got CML I have tried to lift weights just to keep in shape but my muscles get way too sore

by ffiorellino (Sep 23)

Hi pai5zg,
Running is also part of my life and since I was diagnosed CML (April 2017) I reduced a bit but still not giving it up. I am convinced that running had an influence in getting good

by cmljax (Jun 16)

Run until you can't run any longer. I started on 600 mg Tasigna almost 2 years ago - first year was pretty rough with multiple side effects, but I never stopped my workouts. I think it's more

by pai5zg (Jun 15)

Hi,
I am new here with CML disgnosed on 27.4.2018
I was wondering are there any runners here?
Running is important part of my life for last 5 years since I was diagnosed with CML , I am not
Category: Getting help

Replies: 3

Last updated: 23 September 2018
scuba on 18 September 2018

Category: Blood tests

Replies: 22

Last updated: 23 September 2018

"Undetected"
by Isla D (Sep 23)

I'm conjuring up an even smaller 10mg Sprycel tablet for you in my imagination Scuba so you could try 10mg per day for six months before quitting completely.
Also wondering about you getting your

by cmljax (Sep 22)

Thanks Scuba - thought this would be your answer. By the way, I listened in on part of the UK CML conference this morning, and the doc reporting on DESTINY results indicated that he thought

by scuba (Sep 22)

cmljax - He did not provide a source to me, just told me via email on the 5 years being best (instead of two).
He would consider PCR < 0.003% as the same as undetected. Any IS value < 0.01% is

by cmljax (Sep 22)

Scuba: Could you please share the source of your oncologist's data that shows that the length of being undetectable is an independent predictor of success in cessation attempt? Would he consider
Category: Blood tests

Replies: 22

Last updated: 23 September 2018
gazhowell on 19 March 2014

Category: Uncategorised

Replies: 7

Last updated: 21 September 2018

Anaemia from Imatinib for an athlete
by AlastairC (Sep 21)

Hi Gaz. Just realised this original post is some years ago. Can you update me - I reduced to 200mg a year ago. Thanks

by ffiorellino (Sep 21)

Hi Gazowell,
I read your post of few years ago: I'm on the same page, because I like to do trail running on the Alps, but I was found positive to CML and am fighting to combine the two things. I

by cmlblogger (Mar 21)

Hi Gaz - cannot help on the issue
but saying hello from another runner (although not very fast), took up running a few years ago and now try and go for a run every few days (not always possible)

by gazhowell (Mar 20)

Thanks Sandy - I think the fact that I would only go to 200mg a day for 12 months is particularly appealing. With frequent PCR tests it seems very low risk but the benfits could be great.
Hopefully
Category: Uncategorised

Replies: 7

Last updated: 21 September 2018
autadesiddharth on 12 September 2018

Category: Treating CML

Replies: 3

Last updated: 21 September 2018

Questions about blast crisis in CML
by Poppert (Sep 21)

I’ve sufflerad from low thrombocytes, but in chronical phase. Paus and start again was the protocol then. Beeing able to keep on medication longer and longer sounds like good news. I hope it

by autadesiddharth (Sep 21)

Thank you for your response. I'll follow up on the VitD levels and check with the Doctor.
She has also started experiencing low platelet counts and they dont seem to increase. We are taking 2

by scuba (Sep 12)

On again - off again pulsing of Dasatinib is a standard protocol for dealing with myelosuppression (neutropenia, etc.). Her doctors don't want to give her neupogen ("stimulation" shots) in order to

by autadesiddharth (Sep 12)

Hi,
My mother(52y) was diagnosed with CML in March 17 and was started on imatinib immediately. After 8 months on imatinib she started experiencing evening fevers and chill and body aches. Bone
Category: Treating CML

Replies: 3

Last updated: 21 September 2018
Jason Graves on 15 September 2018

Category: Uncategorised

Replies: 16

Last updated: 21 September 2018

Bone marrow transplant.
by David83 (Sep 21)

Hi Jason,
Thats great news about your wife, hopefully now she is at home and on Gleevec the results will just keep getting better. As a newbie CMLer myself and also on Imatinib (generic form of

by RC Kirk (Sep 21)

That's great news Jason! I'm glad you found this forum. That's why we hang out here, to help each other.
Hopefully the Gleevec will be kinder to her than the hydrea was. I didn't

by Jason Graves (Sep 21)

Hello everyone. My wife was released from the hospital and was told she could go home. I just thought I’d post an update on are situation. She’s doing good. All her blood work results are coming

by RC Kirk (Sep 21)

Jason, I found this information today about Hydroxyurea:
The side effects of Hydroxyurea and their severity depend on how much of the drug is given. In other words, high doses may
Category: Uncategorised

Replies: 16

Last updated: 21 September 2018
Mona Gard on 18 September 2018

Category: Uncategorised

Replies: 6

Last updated: 21 September 2018

Chronic fatigue
by Mona Gard (Sep 21)

Thank you. I know what you mean tho, I was fine coming to work then boom it hits. I work a fast place retail and could run circles around everyone. Now I feel like im letting everyone down. Hey don'

by kat73 (Sep 19)

I was 58 when I started on Gleevec. The fatigue was overwhelming and never went away. After two years, I switched to Sprycel and it got noticeably and significantly better, although it's

by Felix (Sep 19)

Hi Super Woman, you have probably spent most of your life so far running around and caring for your family and everyone else, well now its time you cared for yourself a lot more and let others do a

by jason77 (Sep 19)

I was dx last year on my 40th b day and have been on tasigna for about a year, chronic fatigue has never went away yet for me.
Category: Uncategorised

Replies: 6

Last updated: 21 September 2018
blueyes74 on 17 September 2018

Category: Uncategorised

Replies: 10

Last updated: 18 September 2018

Going for TFR
by cmljax (Sep 18)

The results of that study are indeed remarkable and should give many of us great hope, particularly those who are just beginning or have sustained MR4.

by AlastairC (Sep 18)

Thanks for posting that link. Looking at it I am a bit gobsmacked - no less than eight of the authors listed on that paper are on the speaker list for the patient day in Birmingham on Saturday.

by cmljax (Sep 18)

See below for summary of Destiny:
https://learningcenter.ehaweb.org/eha/2018/stockholm/214524/richard.clar...
Note that time of treatment and depth of response (MR4 vs. MMR) were both independent

by blueyes74 (Sep 18)

Back in 2009 i was told i'd be taking pills for life unless a cure came along. I'd been undetectable for most of my results bar the odd 0.001 or 0.003. I wanted to stop back in 2014 but
Category: Uncategorised

Replies: 10

Last updated: 18 September 2018
Romo on 13 September 2018

Category: Uncategorised

Replies: 4

Last updated: 18 September 2018

The next Medical Trend
by David Fitz (Sep 18)

Sounds exactly like what someone from the planet Xitar would say! 😂😂😂

by Romo (Sep 17)

I never heard of planet Xitar.
I think you made this up.
Romo

by scuba (Sep 15)

People from the planet Xitar can get you excited.
Romo is from there. So be careful.

by DawnD (Sep 15)

And here I was getting very excited!!
Category: Uncategorised

Replies: 4

Last updated: 18 September 2018