[CMLHope] Re: No diagnosis, but looking for others' experiences...

2007-01-06 Thread mburwen
The diagnosis for CML is definitive; i.e. if the Philadelphia chromosome is detected, then you have it. Since your WBC is not elevated, the chances are that you do not have CML. In any event, a simple test for the Philadelphia chromosome will settle the matter. The symptoms you describe can be

[CMLHope] Re: 8 new messages in 5 topics - digest

2006-12-23 Thread mburwen
For the uninitiated, osteonecrosis is a condition in which the blood supply to bone has ceased. There is no known way to bring it back. It usually spreads. Eventually the bone dries and breaks up. Most common in knee and hip joints. The condition is easily seen in an MRI. I was diagnosed wi

[CMLHope] Re: Question about High Blood Pressure

2006-12-23 Thread mburwen
I'm also 68. My blood pressure varies between 120/60 and 160/80. None of my Drs. thinks I ought to be on medication for blood pressure, possibly because there is no history of cardiovascular problems in my family. Nevertheless, I bought a blood pressure wrist cuff from Costco, and I take my bl

[CMLHope] Re: Back Pain possible Calcium deficiency, ??? what do you reckon

2006-12-14 Thread mburwen
Chances are that it is not a calcium deficiency, but that is easy to check. See an endocrinologist, who will run some specialized blood tests and a bone density test. Chances are that it is muscle spasm resulting from injury or posture. I have suffered from mid and lower back pains for 40 years.

[CMLHope] Re: Sprycel Questions

2006-12-14 Thread mburwen
Give it a couple of weeks to see if it settles down. If not, then maybe he can get on a Nilotinib trial. During last night's LLS teleconference, boths Drs. Druker and Shah enmphasized the need for patients willing to participate in these trials. My words of comfort are that it is very likely th

[CMLHope] Nausea returns?

2006-12-12 Thread mburwen
I've been on Gleevec for 2 years. I had nausea for the first couple of weeks, but it then went away. Lately, I've been nauseous in the morning. I've no idea if the problem is the Gleevec or something else. Have any of you had nausea after taking Gleevec for a long time? Mike Burwen --~--~--

[CMLHope] Re:

2006-12-05 Thread mburwen
Of all the cancers, there are more support groups for breast cancer than any other. If you want something local, see if there is a Gilda's Club in your area. If not, call the Social Services Department of your local hospital. Online, simply Google "Breast Cancer Support." You will find dozens

[CMLHope] Re: Blurred vision

2006-11-13 Thread mburwen
Hey Greenie, this is your aging buddy talking. Just had an eye checkup. The opthamologist says "This is amazing. 69 years old and you have 20-20 in one eye and 20-25 in the other. Never seen anything like it." "Oh yeah," says I, "How come stuff is blurry, I can't see a golf ball in flight and

[CMLHope] No immune compromise if PCRU

2006-11-11 Thread mburwen
I recently went through a bout of acute viral gastroenteritis. The ER Dr. that treated me for the condition told me that, because I had CML, and even if it was in remission, my immune system was compromised, and that I was more susceptible to viral and bacterial attacks than the average person.

[CMLHope] Re: Anybody decided Glivec not for them, gone all a 10% alternative therapies, dramatic diet change

2006-11-08 Thread mburwen
Please see my responses in-line. > My dr told me the other day if I had a 0% reading on my PCR then I > would have 100% chance of living 5 years and I was cured. The > definition of cured being I would continue on Glivec. Well like many > others I am grateful for Glivec but not sure what qualit

[CMLHope] Re: Cod Liver Oil Pills

2006-11-05 Thread mburwen
I take flax seed oil. It has had a salutory effect on my hair, skin and nails. It is high in Omega-3 so presumably good for cardio, but that is not why I take it. I take 2000 mg/day. Flax seed oil is supposed to (according to some) provide the same Omega-3 benefit as fish oil, but it is purpor

[CMLHope] Re: Education CML

2006-11-05 Thread mburwen
The problem with books is that the technology is moving so fast, that by the time they are published, the technical info is out of date. There is a book entitled "Adult Leukemia" by Barbara Lackritz (ISBN 0-596-50001-7) you may find useful for emotional support, but the tech info is 5 years old.

[CMLHope] Re: Lowering the Gleevec Dose

2006-11-04 Thread mburwen
artist934 wrote: > Mike, > > I must have missed Dan's post. When was it? > > Adrienne I was within the last week. Perhaps the day before my post. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com

[CMLHope] Lowering the Gleevec Dose

2006-11-02 Thread mburwen
Dan's post in which he said that he was on 800/day and is now maintaining remission on 400/day piqued my interest. How many of you have lowered your dose after achieving remission? Of those of you who did that, did you manage to stay in remission or did the bad stuff come back? I'm currently on

[CMLHope] Re: Update on Vanessa and any advice welcome please

2006-10-28 Thread mburwen
Her test results are excellent. Tyically, doctors look for a major cytogenetic response by 6 months. After only 4 months, the molecular test will typically show that the disease is there, although the system has not yet stabilized, and the PCR results are not yet likely to be accurate. Although

[CMLHope] Re: (Nausea)

2006-10-21 Thread mburwen
Dave, I commiserate. I haven't had your specific syndrome, but at our age it's tough to sort out the results of aging from Gleevec side effects or from something new neing wrong. All I can suggest is to get every test covered by Medicare, and, if they don't find anything specific, blame it on ag

[CMLHope] Re: ruined hair

2006-10-18 Thread mburwen
Richard was the first to post about flax seed oil and I was the second, acting on Richard's advice. I've found it helps hair, nails and skin. I've been taking it now (1000 mg 2X/day) for about 4 months. Not only is my hair softer than it ever was, I've lost a lot of gray! My nails are much less

[CMLHope] Re: Abdominal Charley Horses..

2006-10-15 Thread mburwen
I posted this before, but seems like it may be worth repeating. I have those painful foot arch cramps as well. I ony get them at night. Walking for a few seconds alleviates the pain, but it can come back quickly. I found that quinine works pretty well. I now take 2 pills called "Leg Cramps wit

[CMLHope] Report on Endocrine tests re potential bone loss

2006-10-12 Thread mburwen
This is the third and final installment of this story. To recap, three successive quarterly blood tests showed a below normal phosphorous count. Since recent studies have tied this parameter to bone loss, my hemo/onc sent me to an endocrinologist, Dr. Chiu, who has a lot of experience treating p

[CMLHope] Re: Who Likes The Dentist?

2006-10-11 Thread mburwen
!) Dental surgery shouldn't be any different than any other surgery. If your blood numbers are OK, partuicularly platelets and white cells, you shouldn't have any more risk for surgery than a person without CML. 2) Once upon a time their was danger from overexposure to radiation. Remember the flu

[CMLHope] Re: Gleevec 100 mg pills

2006-10-10 Thread mburwen
> does anyone else out there notice that taking carbohydrates in some form > helps avoid nausea? I usually get sick if I don't have at least some type > of carbo. I found I need to take Gleevec with protein. Carbs don't do it for me. --~--~-~--~~~---~--~~ [

[CMLHope] Re: Nausea & Diarreah

2006-10-08 Thread mburwen
Thanks Anjana, I knew you would be as on top of this issue as anyone. In one of the study abstracts you cited it says, "Preliminary data suggest that D is more effective and better tolerated than high dose IM." I think that was written quite a while ago during an early phase of testing Sprycel.

[CMLHope] Re: Nausea & Diarreah

2006-10-06 Thread mburwen
This thread highlights the fact that Drs. aren't in any hurry to move their patients from Gleevec to Sprycel. That includes my Doctor. Yet Sprycel has an anecdotal reputation for far fewer and less intense side effects than Gleevec (with a few relatively rare exceptions), and there isn't any sta

[CMLHope] Re: KNEE OPERATION / BONE GROWTH

2006-10-04 Thread mburwen
Steve, please do not post in all capitals. It is hard to read and is known as "shouting" - considered bad Internet etiquette. There should be no problem getting a torn meniscus repaired or even a knee replacement. A lot of orthopedists want to do scraping. In fact, a lot of them make their ent

[CMLHope] Re: ginger

2006-10-03 Thread mburwen
[EMAIL PROTECTED] wrote: > This is an interesting subject. It sure is. I'll bet that there are hundreds of herbal remedies out there that work. Unfortunately, there are hundreds that don't work and many that can cause harm. If you want to be fascinated, visit a Chinese herbologist. I don't

[CMLHope] Re: Nausea & Diarreah

2006-10-03 Thread mburwen
> Mike , is there a certain amount of mg of ginger one should take to help > with the nausea , have read 250-500mg is good If you buy tablets they are usually 500 mg, but I'll bet that there is nowhere near that amount in ginger ale, and a lot more than that in a piece of candied ginger. I do

[CMLHope] Re: ginger

2006-10-02 Thread mburwen
There is inconclusive evidence that ginger makes the platelets "less sticky" in the same way that a low dose of aspirin does, and the homeopathic people would have you believe that ginger is the way to go to reduce cardiovascular disease. There is no evidence that ginger reduces the platelet coun

[CMLHope] Re: Nausea & Diarreah

2006-09-30 Thread mburwen
I agree that Zofran is magic. Unfortunately, it is prescription, and it is expensive if you do not have drug insurance. I recommend that you try ginger first, as it has no known drug interactions or side effects that I know of. You can take it in any form: ginger tablets (health food store), dr

[CMLHope] Re: Relief for Cramps

2006-09-29 Thread mburwen
Terry, you should resume drinking immediately! Cures a lot of ills. Seriously, booze is OK as long as it doesn't impair liver function, and you don't drink too much. The liver info will appear in your blood tests and the local gendarmerie will take care of any other issues. :-)) Mike --~--~--

[CMLHope] Relief for Cramps

2006-09-28 Thread mburwen
I've been getting foot cramps at night and they have been getting increasingly worse. Since a number of people on CMLHope have posted the same, I assume it is a Gleevec side effect. My Dr. advised drinking tonic, but drinking at night makes me get up a lot (I'm sure you men over 50 or 60 will re

[CMLHope] Re: What's up with Rachel?

2006-09-28 Thread mburwen
Fortunately, the timing is good. There are alternatives to Gleevec both on the market and in trials. You should certainly be consulting with with one of the experts who is aware of all the alternatives. On Oct. 18th or 19th, the Leukemia Society is holding one of its informational teleconference

[CMLHope] Re: Ok this is what I learned yesterday....

2006-09-27 Thread mburwen
I'm no Dr., but from my reading, it seems that Trisomy 8 is potentially serious in patients with AML, but not CML. It seems to be particularly serious in the first trimester of pregnancy. In any event, if you Google "Trisomy 8" you will find dozens of articles and other references. You might al

[CMLHope] Re: Randy fish test

2006-09-27 Thread mburwen
Mayo ought to be pretty good, although I have not heard anything specific to CML from there. You might look into having the test analyses done at Mayo since it is likely to have superior equipment and staff training. As I said before, it is easy to ship blood, and, even if the blood is 2-3 days

[CMLHope] Re: Fishing for answers...

2006-09-26 Thread mburwen
Guys, find out how many BMAs/BMBs the Dr. does each week. If the number is less than 10 or so, find somebody else. I can personally attest to the fact that there is a huge difference in skill level between Drs. You might be able to tell something by the length of the appointment. Drs. who know

[CMLHope] Re: Randy fish test

2006-09-25 Thread mburwen
Sandy, is your Dr. Doing regular PCR tests? If not, he should be. After 6 months on Gleevec, the FISH test is not terribly useful. Be that as it may, 6% is not a bad result, and, depending on the capabilities of the lab that did the test, may even be within the margin of error of the test proces

[CMLHope] Re: Fishing for answers...

2006-09-23 Thread mburwen
Chrissy, I will try to respond in simple terms - not easy for me! First, after you have been on Gleevec 6 months or so, the FISH test is not very useful. The PCR test is the one you want. The FISH test looks at 100-200 cells, but the PCR test looks at 1,000,000+. A 5% response on FISH is not m

[CMLHope] Re: No-cost BMTs?

2006-09-21 Thread mburwen
I am pleased to present the following quote which I received from City of Hope this morning via email: "City of Hope has a Charity Care Policy by which patients are screened for financial need. Once a patient is accepted for care under this policy, then any treatment including transplants, chemo,

[CMLHope] Re: No-cost BMTs?

2006-09-21 Thread mburwen
> Unfortunately, this is no longer accurate. City of Hope discontinued > several years ago its former policy of accepting all comers for BMT > regardless of ability to pay. H. I will check. A friend of mine is on the City of Hope Board of Directors, and he thinks the policy is still in ef

[CMLHope] Re: Fwd: Re: [CMLHope] Randy fish test

2006-09-20 Thread mburwen
Sandy, something I think is wrong with the data, either as you have presented it or as told to you by your doctors. At this stage (after 6 months on Gleevec), the FISH test is virtually useless. The PCR is the only one that counts. In the PCR test, 1-2 million cells are examined. 19 out of 100

[CMLHope] Progress report re low phosphorous

2006-09-19 Thread mburwen
A few weeks ago, I submitted a post about the effect of Gleevec on phosphorous, and received several requests to keep people informed of my experience. This is Chapter 2. My phosphorous count measured below the normal range for 3 consecutive blood tests taken over a period of 6 months. My hemat

[CMLHope] Re: Questions, questions, and more questions...

2006-09-19 Thread mburwen
The person who submitted the post quoted the number .9 which is essentially 1.0, meaning (I thought) nearly 100% positive for BCR-ABL. This made little sense to me. (BTW, I used to be a mathematician and I do know what a logarithm is.) The system you describe requires that one know the baseline

[CMLHope] Re: Questions, questions, and more questions...

2006-09-18 Thread mburwen
Those numbers you quoted don't sound like PCR test results, which are generally expressed as a logarithm. They sound like FISH results. If so, they are all in the "noise level." If they are PCR numbers, then they are all high. .06, for example is 6 log 2. Good results are log 3 or better. Th

[CMLHope] Re: What should I do now?

2006-09-17 Thread mburwen
gbengston wrote: > Anjana, OHSU is where I really want to go. My mother on the other hand > thinks that if a bone marrow transplant is inevitable, then we should > go to Hutch. She thinks that since I have a local oncologist and a doc > at Emory(Atlanta), we would be involving too many people if

[CMLHope] Reducing Gleevec dose after PCRU

2006-09-15 Thread mburwen
Are there any studies that show the effects of reducing the Gleevec dose after achieving PCRU? I've seen a fair amount of anecdotal information, but nothing scientific. I achieved 3 log on 400/day. Went to 600 and almost immediately became PCRU where I've remained going on 9 months. I'd like t

[CMLHope] Re: Cost of Gleevec.....

2006-09-13 Thread mburwen
> It is pretty sad when being almost 40 I am really starting to > become so distrustful of our goverment, and jaded about society in general. If you are sad now, in 30 years you will be devastated. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhop

[CMLHope] Re: What should I do now?

2006-09-13 Thread mburwen
As the others have mentioned, doesn't seem like your test results are that bad. I suspect that you don't need a BMT, but if it turned out that you do, make sure that you go to one of the few BMT centers that specializes in seniors (you said you were on Medicare). I'm treated at City of Hope whic

[CMLHope] Re: Cost of Gleevec.....

2006-09-10 Thread mburwen
> I did a quick Google search on this and the R&D annual budget for the > NIH (US government health research) is 28 billion and Novartis spent 4.8 > billion in 2005 on R&D. One has to be pretty careful about throwing around these numbers. The US spends considerably more than $28B. There are su

[CMLHope] Another Gleevec Side Effect?

2006-09-02 Thread mburwen
I've had trouble breathing lately. I'm seeing an ENT specialist. He says the problem has several contributing factors; deviated septum, which he says I've probably had for a very long time; enlarged turbinates, which he says come with age; sagging muscles in the nasal passage, another result of

[CMLHope] Re: Gleevec, Phosphorus and Bone Loss

2006-08-30 Thread mburwen
> There is an article on low phosphorus and bone loss on Gleevec by > MSKCC doctors, published this year. The article is a very comprehensive > article. That is probably the article my Dr. referred to since he specifically referred to Vitamin D. I think he said it was published in the NEJM.

[CMLHope] Re: Time Frames for Complete Cytogenic Remission & side effects tips

2006-08-30 Thread mburwen
> Finally her hair is thinning a little, again as a response to the > Gleevec. Does anyone have any advice? Try flax seed oil, 1000mg 2X/day. Takes a couple of months to start to work, but couldn't hurt. It's cheap - about $6 for 200 capsules at Costco - and there are cardiovascular benefits f

[CMLHope] Gleevec, Phosphorus and Bone Loss

2006-08-29 Thread mburwen
I had my quarterly checkup today. Everything good except for low phosphorus count. My phosphorus count has been low since a few months after I started on Gleevec. Up to now, my Dr. has ignored this, but today he said that a new study was released showing 1) Gleevec can reduce the phosphorus cou

[CMLHope] Re: Muscle Cramps

2006-08-29 Thread mburwen
Richard Troxel wrote: > I eat one to two bananas every day and take a calcium supplement. Further I > do daily stretching exercises and have managed to keep my cramping down to > mild levels. See http://www.ext.colostate.edu/PUBS/foodnut/09355.html for a list of foods high in potassium. Bananas

[CMLHope] Re: Reactions...

2006-08-28 Thread mburwen
I didn't know I had CML when I was diagnosed. High WBC picked up in my annual physical. After starting Gleevec, I had several side effects, some of which have gone away (nausea), some of which have remained (edema, especially around the eyes) and some new ones that have since developed (weight g

[CMLHope] Re: What To Take For Cough & Cold??

2006-08-27 Thread mburwen
lbailes wrote: > I was told to avoid acetaminophen (Tylenol and Excedrine). This is also > listed on the Gleevec site. The issue with Tylenol has to do with its effect on liver function. The body's system for processing Gleevec taxes the liver in some people. Adding Tylenol can exacerbate the pr

[CMLHope] Re: Who can you trust?

2006-08-23 Thread mburwen
Thanks, Cynthia, but I can't take much credit because I merely parrot what is said by people who do the real research. BTW, I think what is written or presented here by Anjana, Trey, Richard and Rob are also to be believed. Mike Burwen --~--~-~--~~~---~--~~ [CM

[CMLHope] Flax Seed Oil Seems to Work

2006-08-22 Thread mburwen
Several weeks ago, someone posted a message stating that he found that flax seed oil had a salutory effect on his skin which suffered the common Gleevec side effects. He said it took a couple of months. When I read that, I decided to try it. It's been about two months. Not only has it improved

[CMLHope] Re: Gleevec is out of your system in four days?????????????????

2006-08-21 Thread mburwen
Please read the following: http://experts.about.com/e/i/im/Imatinib.htm You'll see that the half-life of Gleevec is 18 hours and its metabolite 40 hours. That means that most of it will be out of your system on a matter of days. It may take one's system a long time to adjust to being off of Gle

[CMLHope] Re: Singapore is Stem Cell Research Haven

2006-08-18 Thread mburwen
Recently, I attended a presentation by a Chinese Dr. (A Harvard med school graduate) in which he described some of the stem cell research programs at one of China's leading medical schools in Shanghai. I was blown away by the extent of the research, almost none of which gets published for western

[CMLHope] Re: Psychic healing/surgery

2006-08-17 Thread mburwen
Right on John. This sort of post has no place on CMLHope. I like to think we deal with real-world science and experience. Mike Burwen --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You re

[CMLHope] Re: Dasatinib

2006-08-04 Thread mburwen
> I ask my onc and he acted like he didn't know about it. Jeanie, please find another oncologist - one who specializes in CML. CML treatment is all about the latest chemistry. A Doctor who does not keep current with all the latest developments/treatment options is not appropriate for CML. I ha

[CMLHope] Re: Muscle Pain

2006-08-04 Thread mburwen
An oft-mentioned remedy is to drink tonic or take quinine tablets. If it is going to work, it will work very fast. Acetomeniphen (Tylenol) can help, but takes a 1/2 hour or so to kick in. Tylenol can adversely affect liver function, so don't take it too often. If you are going to take Tylenol

[CMLHope] Re: 11 new messages in 6 topics - digest

2006-08-03 Thread mburwen
I've been on Gleevec 19 months. I have thin skin and bleed easily if I bump into something. Unlike the guy who is freezing, I'm the opposite. I'm warm all the time, and sweat profusely if the temperature is over about 80. I've not noticed any difference in skin pigmentation, but hair and nails

[CMLHope] City of Hope making strides in understanding the cause of leukemia

2006-08-01 Thread mburwen
I am treated at City of Hope, the only NCI site in Southern California. I try to keep up with its layman literature, and just received some info that might be of interest to CMLHope readers. I'll paraphrase: "The underlying cause of all leukemias is the presence of leulemia stem cells. Althoug

[CMLHope] Re: New BMB & BMA Test Results

2006-07-30 Thread mburwen
SuzieQ, you already heard that your reasults are excellent from Anjana and Trey, but I wanted to comment on what you said about getting the information from your Dr. I get my blood drawn quarterly by a local blood lab 2 weeks before my quarterly Dr's visit. The blood is then shipped to my Dr. at

[CMLHope] Re: BMA

2006-07-29 Thread mburwen
Jeanine Crabtree wrote: > I agree, my husband hasn't had one for 3 years, his onc said it wasn't > necessary for him as long as his blood work was good. But I worry just the > same and can't seem to change the onc's mind. > If I were you, I would find a new oncologist, one that specializes in b

[CMLHope] Re: Randy-Iowa City Doctor/LARRY

2006-07-26 Thread mburwen
> If I were you I would tell my doc that for my own piece of mind I WANTED to > have at least one, but I worn you they are no picnic and are quite painful > even with sedation. Naturally, there are huge differences in pain tolerance from one person to another, but from personal experience I kn

[CMLHope] Re: Heart Issues Not New to Cancer Drugs

2006-07-26 Thread mburwen
My cholesterol dropped from 220 to 160 due to Gleevec. I discussed this with my hematologist, and he said that this is a relatively common side effect of Gleevec - one that was discovered more or less by accident. Assuming that there is a correlation between cholesterol and cardiovascular diseas

[CMLHope] Re: Randy-Iowa City Doctor

2006-07-25 Thread mburwen
It is true that a PCR test can be run on peripheral blood, but I believe that bone marrow analysis is generally considered to be more accurate, and there is additional information that can be gleaned from BM. From my reading, after you have been on Gleevec for a year or so and have good numbers,

[CMLHope] Re: Nested PCR Test

2006-07-16 Thread mburwen
Following is the transcript from the recent LLS presentation by Dr. Nimer who is the head of hematological oncology at Sloan-Kettering. In the last two sentences, he states that the nested test can sometimes show things that are not there. I discussed this with my Dr., and he says that is precis

[CMLHope] Re: Recent Appointment & Biopsy

2006-07-16 Thread mburwen
>My husband can have the coldest feet on earth If he does, that is your fault. And no, I do not let my wife see these posts. :-) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received

[CMLHope] Re: Recent Appointment & Biopsy

2006-07-14 Thread mburwen
> Also I am always very, very cold. > chris in Minn 1. My wife does not have CML, and she is always cold. Not trying to be sexist, but I think it is a common female syndrome that gets worse with age. 2. You are in Minn? What the heck do you expect? If you want to be warm, move to Palm Spri

[CMLHope] Nested PCR Test

2006-07-14 Thread mburwen
Someone mentioned the existance of a "nested" PCR test, purported to be more accurate than the conventional PCR test. I emailed my Dr. to ask about it, and this is his answer: "I used to do the nested PCR in my lab. It is a qualitative assay that is 10 to 100 times more sensitive than the quanti

[CMLHope] Re: Can someone help with the terminology?

2006-07-12 Thread mburwen
I just wanted to add a bit to the previous posts in this thread. After several months on Gleevec, the PCR test is the only truly useful chromosonal test. I get a FISH every three months and have yet to get a satisfactory explanation as to why it is done. My Dr. is a researcher, and I suspect he

[CMLHope] Re: Hi I'm New and have a couple of questions

2006-07-09 Thread mburwen
It is common for some blood counts (especially WBC and Platelets) to oscillate a bit during the first few months on Gleevec. I assume your wife is being tested every month at this stage, so you will be able to track the blood counts. The initial dose of Gleevec, whether 400, 600, or 800, is Dr.

[CMLHope] Re:

2006-07-05 Thread mburwen
Glucosamine helps cartilage matrix regenerate. There is a lot of evidence that it is very effective for arthritic knee and hip joints, but it would not have any effect on bone pain since cartilage is not involved. Chondroitin is supposed to be a hydroscopic material that attracts fluid to large

[CMLHope] Re:

2006-07-04 Thread mburwen
I'll take issue with part of Robert's message. Leg pain (or foot pain) is a relatively common side effect of Gleevec. For most people, the symptom diminishes after a while. I've been on Gleevec for 18 months and still have foot pain occasionally at night. The easiest way to alleviate the pain

[CMLHope] Gleevec from India

2006-07-03 Thread mburwen
I posted a mention of generic Gleevec being made and sold in India and received several private emails asking me for more information re how to get the drug. To head off more of these emails, I'll post what I know - which isn't much. A Gleevec copy is being made by Ranbaxy Labs, Ltd. and sold un

[CMLHope] Re: A few!

2006-07-02 Thread mburwen
suzieq wrote: > Avis: I was informed that there is no generic form of Gleevec & I > think the discussion we had with the doctor about this is because the > drug company that develops Gleevec holds the drug patton (spelling?) > and it takes several years (it was either 7 or 14, can't remember) >

[CMLHope] Re: Gleevec cost

2006-06-16 Thread mburwen
You indicate that she is on Medicare. If so, and she has Part D and one of the new drug supplement plans, her financial exposure should be considerably less than that. I suggest that you contact one of the non-profit Medicare advisory organizations in your area for advice about how to maximize h

[CMLHope] Re: New Doctor

2006-06-13 Thread mburwen
Just Google her name. You'll find references to all the papers she participated in writing, maybe a bio or two and the trials that she managed. You could contact some of the big name Drs. in the CML treatment business and see if they have anything to say, but I suspect you'll get positive respon

[CMLHope] Re: Another PCRU for the record

2006-06-03 Thread mburwen
Rob, he mentioned maybe three serious side effects. The only one I remember is fluid accumulation in the lungs. My Dr. is David Snyder at City of Hope, and CML is his specialty. The primary dasatinib trial site in Southern California is at UCLA run by Dr. Charles Sawyers. Snyder and Sawyers col

[CMLHope] Another PCRU for the record

2006-06-02 Thread mburwen
I was just tested PCRU, and I wanted to post my history for those of you keeping tabs. As a result of a routine annual physical, I was diagnosed 10/04 with CML showing a WBC of 36,000. No other symptoms. Started on Gleevec 400/day 12/04. I volunteered to participate in a year-long dosage trial

[CMLHope] Re: Gleevec side effects

2006-05-24 Thread mburwen
I don't think it matters which meal you take it with, but I do think that the content and size of the meal can affect the intensity of nausea and other digestive side effects. I found that these side effects are minimized if I have a complete protein in the meal accompanying the Gleevec. Weight

[CMLHope] Re: Neuropathy in the feet

2006-05-13 Thread mburwen
Many Gleevec patients have pains in legs or feet. I get foot pain, also at night. Taking quinine will generally alleviate the problem (a few ounces of Schweppes will do the trick). Since my 68-year old bladder isn't real happy about my consuming liquids in the evening, I don't do that often. I

[CMLHope] Re: celebrating my 44th b'day

2006-05-10 Thread mburwen
Jeanie, I turned 68 in March. Also diagnosed when I was 66. My best friend was just diagnosed with Stage 4 lung cancer. It is unlikely that he will live more than a year. He was a widower who married a new lady just two years ago. I am the lucky one. Mike Burwen --~--~-~--~~---

[CMLHope] Re: bad nails?

2006-05-08 Thread mburwen
Jim, I also have the same problem with scabs persisting for a very long time. I'm hoping to try dasatinib (Sprycel) when it becomes available. The anecdotal information suggests that side effects for most patients are significantly less than Gleevec's. Mike Burwen --~--~-~--~~---

[CMLHope] Re: bad nails?

2006-05-07 Thread mburwen
I don't bruise easily, but my skin tears with barely any effort. My hands look like I shuck oysters for a living. I'm going to try the flaxseed oil - couldn't hurt?! Mike --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com

[CMLHope] Re: bad nails?

2006-05-05 Thread mburwen
I too have fragile skin, although it does not seem to be susceptible to bruising than normal. I believe this is a fairly common side effect of Gleevec since it is mentioned extensively in the literature. I also have dry, brittle nails. Although I do not think fungus is the issue, I'll give the

[CMLHope] Re: FISH RESULTS

2006-05-03 Thread mburwen
The FISH test examines a limited sample (usually not more than a few hundred) cells for the presence of BCR-ABL, the protein that causes CML. When the % of leukemic cells is less than the precision of the measuring equipment (which can vary from lab to lab), the patient is considered to be in cyt

[CMLHope] Re: I feel like I'm whining, but..am I the only one who is still having significant side effects from Gleevec?

2006-04-28 Thread mburwen
This is quite a thread. A real primer on the side effects of Gleevec. I'll add my 2 cents and I hope others will do the same. I'm 68, diagnosed with CML 18 months ago. I'm in cyteogenic remission, but still some residual disease showing up in the PCR test. I went from 400 to 600 mg three month

[CMLHope] Re: I feel like I'm whining, but..am I the only one who is still having significant side effects from Gleevec?

2006-04-27 Thread mburwen
Your experience is probably more typical than atypical. My experience is similar to yours. I am hoping to change from Gleevec to dasatinib as soon as it becomes available, probably this coming June. The anecdotal evidence strongly suggests that dasatinib is just as effective as Gleevec (even mo

[CMLHope] Re: Extremely Gassy

2006-04-17 Thread mburwen
Join the crowd. Gas is a very common problem and GAS-X won't help much because the gas is probably forming in the intestines, not the stomach. Tinkering with your diet may help. Tony suggests drinking less, but a lot of Docs suggest drinking a lot on Gleevec. Try both. Almost everyone on Glee

[CMLHope] Re: Anyone got any answers

2006-03-17 Thread mburwen
I'd like to echo the comments of Terry and Rob. That said, in the first several months of taking Gleevec, it is normal for blood counts to oscillate, sometimes quite a bit as in your case. I think most of the experts would advise shots or oral medications to compensate if you are too far outside

[CMLHope] Re: Breathing problems as a side effect from Gleevec?

2006-02-17 Thread mburwen
With me it is not shortness of breath issue and has nothing to do with lungs or the bronchial system. My problem is restricted airflow through the nasal passages, a condition that hits a lot of people, especially men, in their 60s and 70s. The reason I suspect Gleevec might have something to do

[CMLHope] Breathing problems as a side effect from Gleevec?

2006-02-16 Thread mburwen
I've been on Gleevec for 14 months. Over the last year I have had worsening problems breathing, especially at night. I know that some of the problem is age-related (I'm 68), but my ENT Dr., who knows virtually nothing about Gleevec, says that fluid retension can swell the nasal and sinus tissues

[CMLHope] Re: Gleevec mail order

2006-02-08 Thread mburwen
Palm Springs Unified in California.

[CMLHope] Re: Gleevec mail order

2006-02-07 Thread mburwen
I may be the most fortunate Gleevec recipient of all. My wife's insurance (she is a teacher) has a drug plan through Caremark. When I was on 400mg/day, a 90-day supply cost $30. Now I am on 800 mg/day and the $30 copay is waived! Mike Burwen

[CMLHope] Re: SCT - for my 15 year old son...or Gleevec?

2006-02-04 Thread mburwen
I strongly recommend that your son go to a Dr. who is a recognized CML expert. Either your description of the circumstances is misleading, or your Dr. is unfamiliar with current progress in CML treatment. If you follow the threads here at CMLHope or review the considerable information available

[CMLHope] Re: Novartis loses patent claim on Gleevec In India

2006-01-27 Thread mburwen
There are many posts about this subject. I'll just reply to this one. India has a history of supporting inexpensive home-made drugs at the expense of those companies who sell costly patented ones. If you are clever about it, you can find examples of some drugs available on the web that you can

[CMLHope] Re: CML, Gleevec & Testosterone

2006-01-19 Thread mburwen
I am 68. I've been on Gleevec for 14 months. Now at 800mg/day. My testosterone level remains normal. I've had fatigue problems off and on since I started Gleevec, but there is no evidence to link that to low testosterone. Mike Burwen

  1   2   >