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gautamjaiswal on 10 July 2018

Category: Treating CML

Replies: 3

Last updated: 11 July 2018

Severe bone pain and constant fever
by SusanL (Jul 11)

You might want to check your CYP3A4 status. I just read a study about the Indian population and their slow metabolism of CYP3A4. You may be a slow metabolizer and thus have quite a bit

by gautamjaiswal (Jul 11)

Thanks buddy. The fever is something that I'm unable to get over with. Even my oncologist is unsure of why the feverish tendency.

by Tbrand (Jul 10)

I had this same wbc at diagnosis and started Gleevec right away. Similar symptoms, very weak. My blanket was heavy for me to pull over, bone pain in the legs and swollen ankles. But I got through it

by gautamjaiswal (Jul 10)

Hi,
I'm a 39yr male from India. I was diagnosed of CML a month back, June'18. My WBC count was spiked at 93000 hence I was precribed Hydrea for 10 days post which the count dropped to 7600. I was
Category: Treating CML

Replies: 3

Last updated: 11 July 2018
Adeola on 27 June 2018

Category: Treating CML

Replies: 7

Last updated: 2 July 2018

My body is retaining a lot of water
by Vijay Kumar Verma (Jul 2)

Do exercise and sweat a lot,drink plenty of fluids.posdible take sauna

by Justine (Jun 30)

At last visit four days ago my oncologist prescribed hydrochlorothiazide 25mg, a diuretic, because I have also had edema. It does seem to help. My eyelids are less swollen, in particular, which is

by chevyflame (Jun 30)

I also had full body edema from Gleevec 400mg. Had to discontinue the drug after just 44 days because I had gained ten pounds in three days - all fluid. My opthamologist said even my eyeballs were

by LouiseS (Jun 28)

To follow on from Kat, my husband has had terrible eye swelling on Sprycel . Reducing his medication from 100 to 50 mg has made a huge difference , but it still hasn’t gone away. It’s worst in the
Category: Treating CML

Replies: 7

Last updated: 2 July 2018
scuba on 19 June 2018

Category: Treating CML

Replies: 14

Last updated: 25 June 2018

New dug Miristen targets Leukemic stem cells
by Romo (Jun 25)

This guy talks about the very thing you mention.
Short video.
https://www.youtube.com/watch?v=RvJ_xe5LEyY
Excessive tumor necrosis factor signaling.
Romo

by RC Kirk (Jun 24)

If miristen pans out as an effective agent then we'll be able to live less anxiously. I think that's what he's trying to say.
I believe I read that when the LSCs are active they are reduced by

by cmljax (Jun 24)

But the LSC's are not eradicated by any of the TKI's, at least that's what I understood, which is why their isn't a cure for CML. Perhaps Scuba or Sandy can chime in here. What is the

by RC Kirk (Jun 23)

I think maybe what Guido is trying to get across is that CML is likely to return if the leukemic stem cells aren't fully eradicated by a TKI alone. If miristen pans out as an effective agent
Category: Treating CML

Replies: 14

Last updated: 25 June 2018
slindon2 on 28 April 2018

Category: Treating CML

Replies: 17

Last updated: 21 June 2018

CML relapse
by Tbrand (Jun 21)

Have you been on 600 the whole time?

by kat73 (Jun 21)

Sorry - PS here - I guess I meant you got close to CCyR, which is a truly significant goal. To confuse you more - sorry - have you had a FISH test done? If that is negative, it's a real

by kat73 (Jun 21)

Paul - I'm really sorry for all the consternation the confusion is causing you. I would feel exactly like you in your situation. My guess is that they ARE re-testing your CML status with

by Kathyp (Jun 21)

Hi Paul, I’ve been on glivec since 2003 , and the 1st couple of years I had the same response as you, I went from 400 to 600 and I’ve been in major molecular response ever since . Maybe speak to
Category: Treating CML

Replies: 17

Last updated: 21 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
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
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
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
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
Adeola on 24 May 2018

Category: Treating CML

Replies: 2

Last updated: 25 May 2018

Swollen legs and ankle
by Adeola (May 25)

Thank you so much I will try that

by Tbrand (May 25)

I had this the first 3 months. Wore compression stockings which helped a lot as well as soaking in epson salt bath and then it was gone.

by Adeola (May 24)

help!! My legs and ankles are so swollen. I am on Gleevec is this normal? Anyone know the risen why and how to reduce swelling ?
Category: Treating CML

Replies: 2

Last updated: 25 May 2018
Richd478 on 11 May 2018

Category: Treating CML

Replies: 4

Last updated: 23 May 2018

Dealing with CML
by Richd478 (May 23)

Thank you for your response. My doctor has noticed that for the first 7 years of gleevec my crestinine levels have been between 1.0 and 1.3, however, over the last month they have jumped to 1.54 and

by kat73 (May 12)

Sorry this took me awhile to respond to - I wanted to get some papers together. Yes, Gleevec can raise creatinine and tapdance on your eGFR. When it happened to me in 2010, there was

by David Fitz (May 11)

Alastair, you're absolutely right. The general consensus with clinicians that are leading in this field is that fathering a child on imatinib is safe. The jury is still out on other TKIs, but the

by AlastairC (May 11)

Rich, David knows more about this than I do, but there have been several threads in the past on fathering children on imatinib, and the consensus is that it is not an issue, Much simpler than if a
Category: Treating CML

Replies: 4

Last updated: 23 May 2018
bp3 on 17 April 2018

Category: Treating CML

Replies: 6

Last updated: 15 May 2018

pcr rising:Need Advice
by bp3 (May 15)

Received results yesterday.
BMB was a dry tap unfortunately, but the BCR-ABL test that they ran was .4 (down from 1.4).
Another BCR-ABL was ordered and as long as it checks out OK the plan is to

by bp3 (Apr 18)

Thanks, that will be done in a week or so with BMB.

by janlyn28 (Apr 18)

They did a mutations test on my son and did it through blood test. No biopsy done.

by David Fitz (Apr 17)

I agree with Scuba on this. Get a mutation analysis done - which requires a bone marrow biopsy (I think, in all cases). No big deal for the procedure, but it may help shine a light on the issue.
Category: Treating CML

Replies: 6

Last updated: 15 May 2018
Adeola on 11 May 2018

Category: Treating CML

Replies: 4

Last updated: 12 May 2018

Tinnitus and joint pains
by Adeola (May 12)

Oh wow so sorry about that teddy, I guess everyone’s body is different because I had tinnitus before starting glivec

by teddyb (May 12)

Hey.
I got tinnitus after starting Glivec.
At first it was really bad, but after a few months it got better, not sure if the tinnitus itself got better or that i just got used to it, but its no big

by Adeola (May 11)

Thank you so much David, yes I have friends and family who have been very supportive. I don’t know what I would have done without them

by David Fitz (May 11)

Hi there. That sounds pretty tough - a new CML diagnosis is hard to take. 23 is young - I was in my early thirties when diagnosed, so a bit older than you but not by that much. It's not something
Category: Treating CML

Replies: 4

Last updated: 12 May 2018
Belladoo on 2 May 2018

Category: Treating CML

Replies: 7

Last updated: 10 May 2018

Hello! Help!
by LouiseS (May 10)

Thank you for taking the time to reply. Glad the news was better. I have never come across someone with such a high abr % at diagnosis. Neither wonder his red blood counts were / are so low and it’s

by Belladoo (May 10)

Hi Louise,
thank you for thinking of us.
Thankfully Tuesdays appointment was a bit more positive although I’m still worried. I got the doc to go through how stuffs been going and asked

by LouiseS (May 10)

Hi Belladoo
wondered how your husband's doctor's appointment went Tuesday ?
best, louise

by Belladoo (May 3)

Hi,
hubby is on standard dose only for a few days to push down numbers then they will decide what to do. That’s why he’s being retested tomorrow and Tuesday. Our usual Doctor had been away but
Category: Treating CML

Replies: 7

Last updated: 10 May 2018
MartinZA on 2 May 2018

Category: Treating CML

Replies: 4

Last updated: 8 May 2018

Hello imatinib!
by pianogrl44 (May 8)

I’ve been on 400 mg of Imatinib since October 2015 and honestly, I have found the side effects quite minimal. I experienced the horrible bone pain people talk about for a couple weeks when I

by Justine (May 4)

Hi Martin, thanks for posting this. I have a few thoughts in response.
I've been on imatinib for about 13 months now after diagnosis April 2017. Unfortunately I do have the dreaded puffy eyes and

by LouiseS (May 4)

Hi Martin
just wanted to wish you best of luck on the new drug and thanks for sharing your feelings. I hope this next chapter is much less of a rough ride for you.
Also wanted to suggest you

by Tbrand (May 2)

Hi Martin, I have been on 600mg Gleevec for going on to 3 years now and feel great. No difference then before CML. I never read about the side effects, it’s all, “can” have. So don’t dwell on it. In
Category: Treating CML

Replies: 4

Last updated: 8 May 2018
Nuttyma25 on 1 May 2018

Category: Treating CML

Replies: 1

Last updated: 5 May 2018

Pancytopenia and Nilotinib
by sandy craine (May 5)

Please try not to worry too much about whether this is signs of worsening CML or some other cancer etc. It is more than likely to be due to drug toxicity. Your PCR was pretty much in the

by Nuttyma25 (May 1)

I am a 51 year old female diagnosed with CML in the Chronic phase in January of 2017. I feel certain it was a result of radioactive iodine treatments that I had for thyroid cancer six years ago.
I
Category: Treating CML

Replies: 1

Last updated: 5 May 2018
vonnie on 18 April 2018

Category: Treating CML

Replies: 3

Last updated: 24 April 2018

nausea and diarrhoea
by r06ue1 (Apr 24)

Be sure to not take it on an empty stomach. Also, I like to wait at least one hour after eating before I take mine and I also like to take mine before bed, sleep through most of the side

by vonnie (Apr 24)

Hi David thanks very much for your reassuring reply all well now so guess it must have been a food problem thanks again
Yvonne

by David Fitz (Apr 23)

Hi Yvonne,
Nausea is common enough with imatinib, but usually people get it every day rather than sporadically. So this to me doesn't sound like a side-effect problem. Usually the way people deal

by vonnie (Apr 18)

hi again to all been on imatinib for about 10 months and all going very well no real probs but had a very bad day today with both the above and wondering could this be a side effect or is it more
Category: Treating CML

Replies: 3

Last updated: 24 April 2018
Josie on 10 April 2018

Category: Treating CML

Replies: 4

Last updated: 11 April 2018

CML Blast Crisis
by Tbrand (Apr 11)

I admit, I was a weird specimen. They were a bit perplexed. I could have jogged around the hospital if they let me. Most importantly I was told “ relax, you won’t die from this.” Two weeks into

by sandy craine (Apr 11)

Did you have your blast cell count at diagnosis. I would venture that you were in accelerated rather than blast phase - which is over 30% blast cells in peripheral blood or marrow- although some

by Tbrand (Apr 10)

I was diagnosed ac/blast in 12/2014. 94,000 WBC, 42 PCR, but spleen was normal as well as other blood work. Hospitalized for two days and back to work next day. Strange thing, WBC count dropped

by sandy craine (Apr 10)

Hi Josie,
Blast phase CML is a very difficult disease to treat... sometimes dasatinib is used, but this might not control the disease. High dose chemotherapy is used to get control of the blast cell
Category: Treating CML

Replies: 4

Last updated: 11 April 2018
KevinA on 5 April 2018

Category: Treating CML

Replies: 6

Last updated: 11 April 2018

Bcr Abl rising on 2nd TKI, am I headed for BMT
by KevinA (Apr 11)

Forgot to answer two questions:
1) I haven't tried major dietary changes (ie anti inflammatory), though I eat very well and follow many of the latest health trends (green smoothies, kale salads,

by KevinA (Apr 11)

Hi Scuba, Louise, Kirk:
Thanks for the replies and support, I enjoyed hearing about Scuba's journey and everyone's suggestions. I am seeing a CML specialist at Beth Israel in Boston.
The

by RC Kirk (Apr 7)

Welcome Kevin, Although I think you've been here longer than I have. Your #2 question got me thinking. I went back and checked my pathology reports from five years ago when I had

by LouiseS (Apr 6)

Hi Kevin

Congratulations on your wedding. I am glad you were well enough to enjoy it and your honeymoon. I am so sorry , however, that it has been such a tough year for you coping with the
Category: Treating CML

Replies: 6

Last updated: 11 April 2018