[CMLHope] Sudden problem after twenty years.

I suddenly became terribly anemic and my doctor cut my intake of 400mg Gleevec daily in half. It took five months but I am no longer anemic and the CML does not seem to have become visible as yet. Has anyone else had a problem like this? -- -- [CMLHope] A support group of http://cmlhope.com

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

Been a long time. Trust you are well and holding steady. On Tue, Feb 27, 2018 at 5:15 AM, wrote: > cmlhope@googlegroups.com > > Google > Groups >

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

I agree about remaining on Gleevec and not messing around with other medical entities. On Wed, Dec 14, 2016 at 3:13 PM, Victoria Reiter <vkrei...@gmail.com> wrote: > I'm not quite satisfied with 50%...rather remain on Gleevec and be certain > I don't relapse. > > On Sun, Nov

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

I'm not quite satisfied with 50%...rather remain on Gleevec and be certain I don't relapse. On Sun, Nov 6, 2016 at 5:12 AM, wrote: > cmlhope@googlegroups.com > > Google > Groups >

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic

My onc told me that I could not take the shingles vaccine nor any live-virus vaccine. I've been on Gleevec since 2000. On Fri, Jun 12, 2015 at 6:20 AM, cmlhope@googlegroups.com wrote: cmlhope@googlegroups.com

Re: [CMLHope] My article re: CML

I do thank you for your feedback and am truly glad you liked the article, and responded. I'm much better, getting on with my life, writing, working, traveling..all the things I did before. The only caveats are the on-going side-effects that I've learned to live with (more or less) and having to

[CMLHope] Merry Christmas and Happy New Year

To all CML warriors, may we all have a great and healthy 2013. -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send email to

[CMLHope] eye bleed

It's been a while since I've posted to the group but am doing so now because in the last week I've had two eye bleeds in the same eye. I used to get eye bleeds perhaps once or twice a year but often went for a year or two without having any. This time, I was on vacation and managed to telephone my

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 Messages in 1 Topic

Congratulations Kelly! What wonderful news for you and yours. Vivi On Thu, May 17, 2012 at 7:07 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics - Tasigna #1375a7baf2bb03d1_group_thread_0 [4 Updates] Tasigna

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics

It IS strange that no one, or very few, CMLers are posting. Have we become fatigued with focusing on our chronic condition and its side-effects? How many of us have decided just to get on with our lives and to live as fully as we can, trusting that Gleevec or the other inhibitors will keep us

[CMLHope] Being raised

I remember being left on my own just enough to explore and to learn and not because my parents couldn't be bothered or didn't know how to teach me. I remember being read to daily until I was four, then being taught to read and being encouraged to do so A LOT. I remember my parents being present,

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 Message in 1 Topic

Thank you for having taken these notes and shared them with us. A great service to the CML community! On Thu, Sep 22, 2011 at 6:20 AM, cmlhope@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics - Dr. Mauro's talk

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 Messages in 1 Topic

Thanks for the replies to my posting. However, I was not saying that I would stop taking Gleevec but was merely reporting that the French health institute, which has a good reputation, was doing further research into a whole list of cancer drugs, including Gleevec. I think it behooves us to keep

[CMLHope] Zavie Miller

All our thoughts and prayers are with Zavie Miller and his family. Please do keep us posted as we are deeply concerned for him. VReiter -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 Messages in 2 Topics

Many CMLers have yo-yo-ing results: undetectable for months and then suddenly a little rise and then the next time it will be undetectable again and so on. My onc watches the trend rather than over-reacting at the first change. If it yo-yos within narrow parameters, she doesn't get excited but

[CMLHope] Eye bleeds

I've been on Gleevec for eleven years and began to have occasional eye bleeds about six years ago. This lasted for a short time and then stopped. Now I'll have perhaps one eye bleed a year and count myself lucky. I was unaware that a few people were having bleeding in the brain and am not

[CMLHope] Kidney function

Has anyone found that their creatnine levels have risen while taking Gleevec? I know this occurs when one's blood pressure goes up for any length of time but I'm talking about having normal blood pressure yet creatinine levels rising. VReiter -- [CMLHope] A support group of http://cmlhope.com

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 1 Topic

If you have problems with your teeth, do not hesitate: go see your dentist. For me, Gleevec has tended to leach calcium from my body and I began to have tooth trouble for the first time in my life. I was given Actonel and calcium supplements and those problems seem to have passed. V. On Thu,

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 Messages in 2 Topics

Daniel Brown: It is wonderful that you were diagnosed at 11 a.m. and in the hospital by 12:30 and began treatment shortly thereafter. Did you pay for this out of pocket or did you have health insurance to pick up a good part of the tab? VReiter On Sun, Feb 6, 2011 at 5:24 AM,

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 Messages in 4 Topics

Topichttp://groups.google.com/group/cmlhope/t/517775b14931082d Victoria Reiter vkrei...@gmail.com Feb 01 08:36AM -0500 ^https://mail.google.com/mail/html/compose/static_files/blank_quirks.html#12de5f854ffe03da_digest_top The new health care bill does NOT include the End of Life provision

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 4 Messages in 1 Topic

The new health care bill does NOT include the End of Life provision so many people fear. There is NO provision for planned euthanasia or refusal of services. What was provided for (although after all that kerfuffle in the media and people thinking they were going to be refused service because

[CMLHope] Too much sun

I find I can't stand the sun at all. I always cover up when I'm out of doors and use sunblock in the summer. Always wear a hat. Sunglasses and a parasol, believe it or not. -- [CMLHope] A support group of http://cmlhope.com - You received this

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 Message in 1 Topic

To Greenie and all of us, a Happy New Year and better health in 2011. Vivi On Tue, Dec 28, 2010 at 5:38 AM, cmlhope+nore...@googlegroups.comcmlhope%2bnore...@googlegroups.com wrote: Today's Topic Summary Group: http://groups.google.com/group/cmlhope/topics - Check out Eat Me Signal on

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics

Wishing everyone a happy holiday season, a Happy New Year and good health and continuation to all. Also, an appreciation of the Winter Solstice Total Lunar Eclipse...here in NYC the moon was red for quite a while before the eclipse...fascinating to watch. Victoria On Tue, Dec 21, 2010 at 5:15

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 2 Topics

Novartis has agreed to allow people on the STS-571 Trial have an ABL-PCR test only three times a year rather than the former four. On Sat, Nov 6, 2010 at 6:22 AM, cmlhope+nore...@googlegroups.comcmlhope%2bnore...@googlegroups.com wrote: Today's Topic Summary Group:

[CMLHope] High blood pressure

I'd posted this question to the group about two weeks ago but no one seemed to have an answer. So I'll re-post the question and hope one of our CML warriors responds: Has anyone had the problem of a sudden rise in blood pressure? I've been on Gleevec for ten years and suddenly, this spring, my

[CMLHope] Gleevec and blood pressure

Has anyone found that taking Gleevec has led to a rise in blood pressure? -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send

[CMLHope] tinnitus

I've had tinnitus for years; developed it after taking tetracycline too long. I learned to manage it by going to a hypnotherapist. We approached the tinnitus as if it were pain I needed to deal with: it took about six sessions before I was able to set it aside and ignore it. These days, I note

[CMLHope] Doctors' attitudes

It is essential that one find a doctor with the proper attitude who not only pays attention to your condition and your labwork but, very importantly, to your concerns. If your doctor won't listen to you closely, or is too busy and blows you off, it is extremely important to find another doctor.

[CMLHope] Periorbital oedema

I've been on Gleevec since 2000 and, outside of the nausea, the sudden appearance of cavities in my teeth, the leg, foot and hand cramps which can be dealt with, the worst side-effects (psychologically) are the periorbital oedema and changes in one's facial appearance as well as the weight gain

[CMLHope] swelling during hot weather

I am on Gleevec and know I retain water because of it. Two years ago, there was a terrible heatwave here, in New York City, and I foolishly went to do errands. I wound up with incipient heart failure from water retention. My internist treated me with a diuretic and warned me that in future, I

[CMLHope] Sprycel and Tylenol

Everyone who is on Gleevec has been told not to take Tylenol. Is Sprycel different in that regard? When Tasigna becomes readily available, or the drug of choice, will Tylenol be taboo? Happy Holidays to everyone. -- [CMLHope] A support group of http://cmlhope.com

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 6 Messages in 3 Topics

I'm surprised Dr. Mauro suggested not to take Gleevec in separate doses. Several years ago, I went to consult with Dr. Druker and complained of the intense nausea. At that time I was taking the capsules, the entire 400mg dose, each morning after breakfast. Sometimes the nausea was so bad I'd

[CMLHope] re-enroll

Old address: vrei...@worldnet.att.net New address: vkrei...@verizon.net -- [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups CMLHope group. To post to this group, send

[CMLHope] New Year's wishes

A happy and above all healthy New Year to all CMLers. I hope that 2009 will be a good year for all of us, and a better year for our national economy. Best to all, Vivi --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com

[CMLHope] Bleeding into sclera

How many CMLers have eye bleeds while on Gleevec? I've been having a new series of these bleeds, four years after I first had this problem. As usual, these tend to resolve themselves after a few days but I was surprised to have a new bleed yesterday after a series of them in August. I'd be

[CMLHope] side effect?

Has anyone on Gleevec had vision problems such as blurring or difficulty in focusing? My opthalmologist needs to know if these may be side-effects of Gleevec or strictly an opthamological problem that needs to be addressed as such. Thanks in advance for any info. Vivi

[CMLHope] Celebrex

Does anyone in the group have exprience with taking Celebrex? Any side-effects, warnings, issues that may arise? I've been prescribed Celebrex and after reading the insert, am hesitant to take it. (Doesn't this always happen when we're prescribed another new drug to take alongside Gleevec?)

[CMLHope] Need knee surgery

It appears I will have to have knee surgery very soon. Has anyone in our CML group had this? If so, how did you handle taking your regular Gleevec dosages with the problem of pre-op preparation? Afterward, how long did you have to go before you could take your next dose of Gleevec? Any

[CMLHope] ALL

My oncologist informed me that a new trial is starting with a drug developed for ALL. The preliminary results have been very encouraging and this new trial appears to be a multi-center one. My onc is at NYHospital/Cornell/Weill. She did not tell me the name of the new drug nor the number of

[CMLHope] vascular problems in legs and feet

I, too, was originially put on Interferon and among all the extremely nasty side-effects, one is peripheral myopathy, which means that the nerves and blood vessels in the bottom of the feet are affected and the bottom of the feet may become numb. This is not completely reversible but since I

[CMLHope] Bar extraneous material

Is there no way that extraneous material, such as the power point postings that have popped up recently, can be barred from this website? They do not belong here. We are discussing serious health matters, letting others know of our experience with a disease and the drugs for that disease,

[CMLHope] embryonic stem cells

I am under the impression that stem cells may be harvested from umbilical cord blood, so new parents should be donating umbilical cords upon their removal. The argument that one is killing a child when taking stem cells from a blastula (a group of eight, nine, twelve or twenty cells after

[CMLHope] face flushing

I have the same thing from time to time, usually on the lower part of my face. My eyelashes are also strange: I lost a lot of lashes and when they finally grew back, the left eye lashes grew in curved upward and the right eye lashes grew back pointed straight forward. The right eye is the

[CMLHope] PCR

Can someone describe exactly what is meant by a nested PCR test? Thanks in advance. VKReiter --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed

[CMLHope] ruined hair

I want to thank whoever it was who posted info about Flax Seed Oil for problems with Gleevec-ruined hair. After only a month,Ican already see an improvement in my hair's texture and quality. Now if someone could only come up with info about what really works to helpdamaged teeth, fingernails

[CMLHope] Dental problems with Gleevec

Specifically, more caries than one might expect to see. This might be a weakening of the body of the tooth or a change in the chemistry of the saliva. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com

[CMLHope] cramps

I used to have really terrible cramps in the lower extremeties and in my hands. I began taking Cilostazol, which is a generic, prescription drugand the cramps stopped. I told my onc about this andother CML patients in that practice are now being prescribed Cilostazol, with good results.

[CMLHope] green tea

Just a note: my oncologistsaid that I shouldnot drink green tea while on Gleevec. Evidently, green tea has some untoward action on the bone marrow although she was not specific as to what amounts of green tea she meant. I was so taken aback that I didn't press her further on the issue