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Trevorp93 on 12 August 2018

Category: Treating CML

Replies: 4

Last updated: 13 August 2018

Sprycel 100mg Help with returning of an a eye floater
by Gitel (Aug 13)

How common this is with CML I do not know. Ask your Onc, but do see an ophthalmologist who knows about the retina. Floaters do appear when the ball of fluid in your eye separates from the retina. In

by Trevorp93 (Aug 13)

Hi everyone thanks for getting back to me on this. I went to the emergency room for this and they recently told them that this was a vitreous hemorrhag. I was trying to see if anyone has gone though

by David Fitz (Aug 13)

Hi Gitel,
It sounds like I had similar problems to you. CML made me lose quite a lot of eyesight - I couldn't see things in the centre of my vision very well. For example, I could not read text on a

by Gitel (Aug 13)

I thought eye floaters were related to the retina. When I had them, and they stayed, I was sent to an ophthalmologist who found I had a slight tear in the retina. part of aging. They had healed.
Category: Treating CML

Replies: 4

Last updated: 13 August 2018
knifesl on 3 August 2018

Category: Treating CML

Replies: 9

Last updated: 9 August 2018

Diagnosed May 2018 - Sprycel 100mg (1st month) Sprycel 50mg (after MD Anderson visit)
by scuba (Aug 9)

Hi Susan - Thanks!
On Tom Petty and waiting:
“It was about waiting for your dreams and not knowing if they will come true,” Petty said. “I always felt it was an optimistic song.”
Like waiting for

by knifesl (Aug 9)

Scuba,
I'm very excited to hear your next stop is no drug! I really appreciate the information you provided. Thank you for telling your story, it does really help ease my anxiety. The waiting is the

by scuba (Aug 6)

Hi Susan,
A good reference to know about is the NCCN guidelines for CML:
https://www.nccn.org/patients/guidelines/cml/
This is what doctors who are not experts in the field rely on when treating

by knifesl (Aug 6)

kat73 - Thank you so much for sharing your story. I can't even imagine how frightening it was for you. "An eternity of black hole worrying" perfectly describes how I feel even with all the support
Category: Treating CML

Replies: 9

Last updated: 9 August 2018
RC Kirk on 6 August 2018

Category: Treating CML

Replies: 2

Last updated: 7 August 2018

Early PCR testing is a good idea
by kat73 (Aug 7)

Gitel - Your observations are on point. Also, although I too read it quickly, I couldn't seem to find the TRUE bottom line, which is: what was termed "success"? PCR undetectable?

by Gitel (Aug 6)

Thanks for posting the link. Impressive study. I have only read it quickly. If I understood what I read:
This is a pretty scary article for anyone who has not achieved <10% at 3 months, or

by RC Kirk (Aug 6)

Here's a link to recently published research about PCR numbers. (Found this at the LLS site) I haven't read the whole thing, but it sounds like confirmation that PCR tests should be routine for all
Category: Treating CML

Replies: 2

Last updated: 7 August 2018
Belladoo on 13 July 2018

Category: Treating CML

Replies: 5

Last updated: 1 August 2018

Blast crisis
by LouiseS (Aug 1)

Belladoo, I wanted to reach out and find out how your husband is doing . I have been thinking about you both and hoping you have had some better news since you last posted.
Best wishes Louise

by scuba (Jul 14)

They are learning a tremendous amount regarding T-cells (our immune defense mechanisms) and how T-cells are very much active against cancer all of the time - except when they are not. They are

by Belladoo (Jul 14)

Scuba, thank you so much for your comprehensive reply.
I am very pleased to report that hubby’s doctors must be on the ball with Vitamin D as they have got him on supplements as part of his

by LouiseS (Jul 14)

Belladoo I am so sorry to hear this. I hope you have family and friends close by to support you both.
I would also post on the community section of the lls.org website. Trey (and others )who
Category: Treating CML

Replies: 5

Last updated: 1 August 2018
MartinZA on 27 July 2018

Category: Treating CML

Replies: 4

Last updated: 30 July 2018

Candida: hoax or not?
by MartinZA (Jul 30)

Thank you so much everyone! I think that the very best choice we have as CML patients is to stick with the TKIs and all this other stuff is incidental. Today I heard a discussion about

by JohnFromChicago (Jul 27)

Sounds like a hoax to me, especially the stop TKI part, haha. Although I will say it is interesting that I have always had a facial skin condition called seborrheic dermatitis which is caused

by davewell (Jul 27)

I feel your pain.
The way I solve the problem is, for the most part, not telling people I have CML. I am lucky enough to be generally healthy (I cannot type this with a straight face, I mean, I am

by David Fitz (Jul 27)

"He is encouraging me to stop imatinib and start on his diet plan."

This is the point that I would completely and utterly stop listening to anything he says.
There are of course valid reasons
Category: Treating CML

Replies: 4

Last updated: 30 July 2018
Tedro on 15 July 2018

Category: Treating CML

Replies: 1

Last updated: 15 July 2018

chest congestion
by AlastairC (Jul 15)

Tedro, I believe it can be a side effect of some of the medication. Please tell us when you were diagnosed, what medication you are taking, the daily dose, and any recent test results. It is likely

by Tedro (Jul 15)

Hi,
Is persistent upper chest/respiratory congestion a known problem?
Category: Treating CML

Replies: 1

Last updated: 15 July 2018
SUHAS D.S. on 7 November 2017

Category: Treating CML

Replies: 32

Last updated: 13 July 2018

Recently diagnosed with CML July 2017
by SUHAS D.S. (Jul 13)

Thanks a lot for all your help. CML support has made me so confident that I am able to be positive and also helped me to achieve this result.
Thanks again for your response.
Regards

Suhas.

by AlastairC (Jul 12)

Suhas delighted for you. Hope you and your family are very happy.

by scuba (Jul 12)

Hi David ...
... and a bad test can give a false positive too!
all that means is when PCR's fall below 0.1% - it's noise.

by David Fitz (Jul 12)

Congratulations Suhas!
Great result, but don’t worry about undetectable. Most of us have never got that result, and we’re fine. A really good PCR test will be able to detect a very low number of “
Category: Treating CML

Replies: 32

Last updated: 13 July 2018
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