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tom888 on 14 June 2018

Category: Blood tests

Replies: 8

Last updated: 19 June 2018

TKI and therapy
by tom888 (Jun 19)

After three months of imatinib treatment and a first quantitative count of 0.56% pcr I stopped the drug for 40 days. My last haematological measurements were relatively good! I have no other way to

by Romo (Jun 16)

I dreamed I fell into the dark ocean.
Someone threw me a raft.
I reject the raft because
I might die after I’m saved.

by Tbrand (Jun 16)

Everything we do in life has consequences. CML is a mutation in itself. The sample studies are great low hanging fruit for publication but in my opinion a lot of hyperbole. Too many variables. The

by tom888 (Jun 15)

good afternoon
Category: Blood tests

Replies: 8

Last updated: 19 June 2018
Junglecat on 18 June 2018

Category: Uncategorised

Replies: 4

Last updated: 19 June 2018

Advice for newly diagnosed on Gleevec 400mg
by LouiseS (Jun 19)

Junglecat, I too would recommend contacting LLS.org for advice on getting financial aid. I so hope they are able to help you. Also is your medical practice able to help? My husband is on Sprycel and

by Gitel (Jun 18)

You might want to check out the Leukemia and Lymphoma website. It is US based and quite different from this site. However, it may have a path to USA resources for CML. I have never fully

by Junglecat (Jun 18)

Thanks for the reply, Gitel,
I have been on SSDI for over 12 years, so I am already on a Medicare policy. Even $700 a month would leave my husband and I penniless, as we too are on a fixed income of

by Gitel (Jun 18)

Hi:
i was diagnosed in December 2017, put on Gleevac and was resistant to it and am now on dasatinib, Sprycel. So far it seems to be working, but I will know more in 2 weeks when the BCR ABL
Category: Uncategorised

Replies: 4

Last updated: 19 June 2018
Janerussell on 22 March 2018

Category: Treating CML

Replies: 6

Last updated: 18 June 2018

First time posting
by Sid35 (Jun 18)

Hi Melanie B,
How are you doing? I am in US too and currently in almost the same situation. Had to stop Sprycel due to recurring low platelet and anc. Started gleevec. Platelets and anc keep on

by Melanie B (Mar 25)

Jane, so sorry for what must seem like an endless roller coaster ride for you. Totally understand your fear of yet another TKI sending your numbers crashing again. I was on that same roller coaster

by LouiseS (Mar 25)

Hi Jane
I am so sorry for the very rough time you are having and I feel guilty for complaining about my husband’s swollen eyes in another post. My husband’s oncologist has been very open and

by EvaH (Mar 24)

I second the suggestion that you should now be seeing some high level specialist in CML
If you're problems continue and you can get to Ireland, it may be worth your while to see Michel O Dwyer in
Category: Treating CML

Replies: 6

Last updated: 18 June 2018
kpatwardhan on 7 October 2017

Category: Uncategorised

Replies: 6

Last updated: 18 June 2018

Low WBC and platelet count with Imatinib or Sprycel
by Sid35 (Jun 18)

Hi,
Are you still using this forum? I was wondering how is your mother doing now and how are the counts?
Regards

Sid

by AlastairC (Oct 8)

It might be worth asking your GP if there are any historic records of blood tests for your Mum which could provide a pre-diagnosis wbc. All the best to her and you.

by AlastairC (Oct 8)

Hi, My CML diagnosis was in April 2007, just around my 50th birthday, It took me over a year to get a BCR-ABL less than 0.01, which was as sensitive as the hospital which tested could go at

by kpatwardhan (Oct 8)

Could I please ask when were you diagnosed with CML? Thanks
Category: Uncategorised

Replies: 6

Last updated: 18 June 2018
LisaLisa on 6 June 2018

Category: Uncategorised

Replies: 7

Last updated: 18 June 2018

Forum (and CML) newbie
by Junglecat (Jun 18)

Nice to know you. I am also new. I will be starting Gleevec at the end of the week. I also live in the US, am 64 years old and am working as an adjunct professor of English at a local community

by LouiseS (Jun 6)

welcome Lisa !
You might want to check out magnesium to help with the cramps and bone pain.
My husband hurt his shoulder and aggravated an old shoulder pain several months ago. He had to have

by chrissie (Jun 6)

Hi Lisa
Welcome to this supportive and very informative website. I was dx nearly 9 years ago and have been on imatinib since then. The early weeks weren't brilliant - very puffy eyes, nausea, cramps

by alexmcpee (Jun 6)

Yes the musclar skeletal aches are common as is joint pain. Small price to pay as you know for treatment of this horrible thing.
I’ve just got back from the pharmacy (UK hospital) to collect my 3rd
Category: Uncategorised

Replies: 7

Last updated: 18 June 2018
Felix on 16 June 2018

Category: Blood tests

Replies: 3

Last updated: 17 June 2018

6 Month BCR- ABL RESULT
by scuba (Jun 17)

Cool - you are well on your way to a zero after the decimal point.

by Chuckster (Jun 16)

CONGRATS!

Very happy for you!

Chuck.

by David Fitz (Jun 16)

Congrats! That’s a fantastic response. You must be delighted.
David.

by Felix (Jun 16)

Hello all you CML ERS ,I hope you are all feeling well and doing ok.Just had my 6 month BCR-ABL test result and it is 0.79%.My first big fat zero before the decimal point so happy and relieved just
Category: Blood tests

Replies: 3

Last updated: 17 June 2018
Sid35 on 9 June 2018

Category: Treating CML

Replies: 13

Last updated: 15 June 2018

Consistent Low Counts on Sprycel Moved to Gleevec What to Expect ?
by Sid35 (Jun 15)

Thank you Sharon for your kind words. Praying for the best for both of us.

by taylorsharon (Jun 15)

Sid . stay strong ..i know the feeling it can be overwelming and feels never ending ... things will get better they have to im the same as you my counts have taken a dive and dont want to come bk

by Sid35 (Jun 13)

Latest CBC shows platelets are down to 47K (from 72K last week), Little drop in all other counts except HCT. I started on Gleevec 300mg three week's back. I am really not sure whats going wrong. My

by Sid35 (Jun 12)

Good article. Thanks Scuba !
Category: Treating CML

Replies: 13

Last updated: 15 June 2018
nigel on 13 June 2018

Category: Uncategorised

Replies: 3

Last updated: 14 June 2018

Generic Imatinib - Cipla brand, information please
by MartinZA (Jun 14)

Hi there Nigel
I am on a generic imatinib supplied by Cipla South Africa, branded and marketed as Imavec here in South Africa. I'm not sure if this is the same generic that you are asking

by Kathyp (Jun 14)

Hi, I changed from glivec to a generic brand but soon changed back to glivec , they made me sick most days , headaches and a few other side effects , x

by Romo (Jun 13)

This might be relevant to this discussion.
https://www.thehindubusinessline.com/opinion/columns/strengthen-healthca...

Romo

by nigel (Jun 13)

Generic Imatinib. A little help please. England certainly, and I believe the UK have agreed a national contract for Imatinib to be supplied by Cipla of India. Is anyone on this brand already, if so
Category: Uncategorised

Replies: 3

Last updated: 14 June 2018
taylorsharon on 13 June 2018

Category: Uncategorised

Replies: 9

Last updated: 14 June 2018

Low counts on sprycel ..platelets not coming up
by Romo (Jun 14)

They steadily went down. Started out at 350K
Went down to 100K after about 9 months.
Now back to 200K my last test.
I was worried about this and that’s when I did the Papaya drink.
My

by Sid35 (Jun 13)

Hi Romo,
How did your platelets behaved during this one year ? Did it frequently drop to very low level? And did you have to pause medicine for a few times to let the counts go up ?
Regards

by taylorsharon (Jun 13)

Thank you romo ive also started drinkin g the papya leaves x

by taylorsharon (Jun 13)

Thanks kat 73 x
Category: Uncategorised

Replies: 9

Last updated: 14 June 2018
Chuckster on 4 June 2018

Category: Blood tests

Replies: 7

Last updated: 13 June 2018

New Bcr/Abl1 (IS) Test Results in from May 30th 2018
by Chuckster (Jun 13)

Thanks for the info!
My Oncologist is on top of it, so based on the X-rays etc, just lowering dosage at this time.
New set of X-rays in 2 weeks.
Chuck.

by kat73 (Jun 13)

That's great news on the reduction. But be advised, diuretics usually don't make a dent in a pleural effusion and corticosteroid treatment can help a little, but a complete drug stoppage has

by Chuckster (Jun 13)

Just got back from my oncologist.
CT with contrast done this morning is showing slight water in left and right lung, but not enough to need to extract with needle or to prescribe a diuretic.

by Chuckster (Jun 9)

Ok latest update from this Wed.- going to give it one more week - changed time of taking med from night to just after breakfast.
I have to get to complete remission in one year ( From Feb 2018 to
Category: Blood tests

Replies: 7

Last updated: 13 June 2018
AlastairC on 9 June 2018

Category: Blood tests

Replies: 4

Last updated: 13 June 2018

ELNet recommendations and NCCN guidelines - MMR in 12 months?
by Romo (Jun 13)

Can you imagine going into the biggest shoe store in the world.
And having a choice of every possible style of shoe or boot or
slipper ever designed to choose from?
The only exception is

by kat73 (Jun 13)

Amen.

by MartinZA (Jun 13)

Hi Alastair
I agree with you 100%. The guidelines were an IMMENSE source of anxiety and worry for me, because I was already very sick when diagnosed and borderline accelerated phase, with a

by David Fitz (Jun 10)

The thing is, these guidelines were made for clinicians not patients. But of course patients read them too, and in these modern times with such access to information it’s impossible not to look
Category: Blood tests

Replies: 4

Last updated: 13 June 2018
Tedro on 10 June 2018

Category: Treating CML

Replies: 3

Last updated: 12 June 2018

Should I Or Shouldn't ai Take Treatment
by Philiptibbs (Jun 12)

I totally understand your Anger and I was the same way. Please take the medicine. I've lost everything that I used to do before my diagnosis 20 months ago . I used to be a bodybuilder and now I can'

by Justine (Jun 10)

Tedro, I think I understand your anger. I have felt so angry sometimes that I don't want to take the pills: Imatinib, for me, since April 2017. The idea that my (and our) misfortune allows big drug

by Libby (Jun 10)

http://www.bloodjournal.org/content/126/1/2?sso-checked=true

This article shows you would have 8 years max without taking treatment. It doesn't discuss quality of life during those 8

by Tedro (Jun 10)

I started Sprycel 2 weeks ago.
11q Ph+ Unmutated; also and first diagnosed was CLL.
If I say: I think I will outlive them or least not die for 15 years, AND, that I believe I'm just feeding their
Category: Treating CML

Replies: 3

Last updated: 12 June 2018
Susan Cole on 12 October 2016

Category: Uncategorised

Replies: 7

Last updated: 12 June 2018

Dasatinib side effects
by Justine (Jun 12)

Me too:
3/27/18 (12 mos. post diagnosis): WBC 2.9 (should be at least 4.5), RBC 3.38 (should be at least 4.2), HGB 11.7 (should be at least 12 -- very close!), Platelets 115 (should be at least 150

by taylorsharon (Jun 12)

Feeling scared ..I have been dx 9years .. off sprycel 8 weeks now my counts crashed had platelet transfusions but still waiting for them to rise ..anyone else had this plz ..bmb in the morning ..

by AlastairC (Jun 11)

Just wanted to give my example in support of Kat. My WBC has never been at normal levels. 30 years ago when I had a testicular cancer it was around 2.5 or 3. That is when I had the radiotherapy

by kat73 (Jun 11)

Susan - Many people never get their blood counts all the way back strongly in the normal range, and that's perfectly fine. Your WBC of 2.7 is about what I always have, and have for 9 years!
Category: Uncategorised

Replies: 7

Last updated: 12 June 2018
Moira McCarter on 6 June 2018

Category: Treating CML

Replies: 4

Last updated: 9 June 2018

Break in treatments.
by David Fitz (Jun 9)

Eva, I don’t think those dose reduction protocols (which are ESMO ones, I think - not ELNet but I might be wrong) are for adult patients. I don’t thin they apply to paediatric patients which are a

by EvaH (Jun 9)

The protocol for dosage reduction and discontinuation was only in final stages as of last year, and this is among the leading specialists in Europe. Its possible that your doctors are not yet up to

by David Fitz (Jun 6)

Hi Moria,
Gosh, that is young for CML. 800mg of imatinib seems like quite a lot - it’s the highest dose approved for paediatric use.
10 years ago we were all told we would be on TKIs for life

by alexmcpee (Jun 6)

Oh my goodness that’s so young!
I am not sure but maybe the protocols are different the younger the patient.
All I can say is he’s a very brave young man I was feeling bad about being 38!
I
Category: Treating CML

Replies: 4

Last updated: 9 June 2018
MartinZA on 8 June 2018

Category: Treating CML

Replies: 2

Last updated: 8 June 2018

Imatinib update
by MartinZA (Jun 8)

Hi there Kat and thanks for the kind words And especially for that important information.
I guess we win one battle and then cause secondary damage to ourselves with the drugs! When next I see my

by kat73 (Jun 8)

Martin - So happy you are feeling better! Keep an eye on #4, though, OK? They are finding more and more of this effect of imatinib on the kidneys (high creatinine levels, low eGFR) and

by MartinZA (Jun 8)

Hi everyone
Just over a month ago I wrote a detailed post about how I was switching from dasatinib to imatinib due to the unusual and terrifying side effect of swollen lymph nodes that mimicked
Category: Treating CML

Replies: 2

Last updated: 8 June 2018
alexmcpee on 6 June 2018

Category: About CML

Replies: 5

Last updated: 8 June 2018

Massage - Nilotinib
by alexmcpee (Jun 8)

Hi Martin!
Many thanks for your recommendation. I’ve only been on Nilotinib for about 6 weeks or so so it’s all very new to me. And raw!
I’d say the joint pain is more prevalent now 6 weeks in and i

by MartinZA (Jun 8)

Hi Alex
I would strongly suggest going for it and getting the massage done! However, I have a cautionary tale to tell that might help you:
Six months after my diagnosis, I decided to book

by MartinZA (Jun 8)

Hi Alex
I would strongly suggest going for it and getting the massage done! However, I have a cautionary tale to tell that might help you:
Six months after my diagnosis, I decided to book

by David Fitz (Jun 7)

Hi Alex, massage is a great help for stiff muscles. I don't see any reason to avoid any oils or anything. I suffer from stiffness too, not too bad really and probably just part of the ageing process
Category: About CML

Replies: 5

Last updated: 8 June 2018
alexmcpee on 7 June 2018

Category: Uncategorised

Replies: 2

Last updated: 7 June 2018

Normal spleen - exercise
by alexmcpee (Jun 7)

Hey David
Thanks for your response it’s appreciated!
Blimey you were lucky not have had it knocked hey! I too went to the gym and did some pretty heavy lifts 2 days before diagnosis! Lucky I didn’t

by David Fitz (Jun 7)

Hi Alex,
I managed to play a game of rugby the week before diagnosis (I was absolutely gassed a few minutes into the game though!) with a huge spleen. I was lucky I didn't do any damage to it!

by alexmcpee (Jun 7)

Hi,
Once your spleen returns to normal size (which mine has) is it ok to return to exercise? At dx I was told to avoid but that’s because it was massive.
And are there any known forms of
Category: Uncategorised

Replies: 2

Last updated: 7 June 2018
bizweep on 7 June 2018

Category: Clinical trials

Replies: 1

Last updated: 7 June 2018

Reduced Dossage
by cmljax (Jun 7)

I started on 600 MG/day at Dx in October 2016; hit MMR in less than 90 days. Due to some unusual and fairly serious side effects, my oncologist authorized a series of fairly rapid dose

by bizweep (Jun 7)

Hi all, I've been on Tasig from Dec 2012. 19 of 22 have been 0.00. I probably should have been in a trial for elimination of the drug but the Dr was not interested. No
Category: Clinical trials

Replies: 1

Last updated: 7 June 2018
Trevorp93 on 7 June 2018

Category: Treating CML

Replies: 4

Last updated: 7 June 2018

3 month check up pcr
by RC Kirk (Jun 7)

If your PCR test result is less than five percent at three months, then that is usually a sign of good response to your medication and that you're headed in the right direction. When I began

by AlastairC (Jun 7)

Trevor I suggest you go to the templates page on this site and download the two templates on the right hand column for early conversations with your treatment team and monitoring your blood results

by Trevorp93 (Jun 7)

Thank you I don’t understand anything right now but I’ll ask again when I see him. I just remember saying that I had 1 percent in my bone biopsy of when I am in the chronic phase to the accelerated

by RC Kirk (Jun 7)

Well, your questions can't really be answered unless you're sure which tests you're referring to.
Bone marrow tests are generally visual tests where the pathologist examines the samples and
Category: Treating CML

Replies: 4

Last updated: 7 June 2018
robert mcadie on 5 April 2018

Category: Blood tests

Replies: 14

Last updated: 6 June 2018

Consultation
by robert mcadie (Jun 6)

Just got results of 1ST BCR-ABL since going drug free 6 weeks ago. Everything is looking good with the result being 0.002
Robert is feeling really tired and has a fair bit of bone pain but is loving

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by robert mcadie (Apr 22)

Will do, hopefully starting tomorrow

by cmljax (Apr 21)

So Robert is trying cessation and not dose reduction? Whatever the case, please keep us informed. We'll be keeping our fingers crossed
Category: Blood tests

Replies: 14

Last updated: 6 June 2018