The Leukemia & Lymphoma Society - Fighting Blood Cancers

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10 Replies Last post: Nov 30, 2009 3:21 PM by kinadra  
dmacarty   2 posts since
Oct 12, 2009
Currently Being Moderated

Oct 12, 2009 9:08 PM

Gleevec questions

Hello Everyone,

 

I am new to the list.  I have some questions I'm hoping to get answered.  I have CML and was originally diagnosed with a white cell count of 331,000, May 8th of 2000.  I went to MD Anderson and got in on the tail end of the Glevec study (then called STI-571).  I went into remission very quickly after starting Gleevec. I have always taken 400mg each day with breakfast.

 

I'm wondering a couple of things and will start with side effects.  First of all, muscle cramps.  I do tend to get these (severe) especially if I don't drink enough water.  I've never gotten any good advice from anyone on how to treat these?  I do seem to be hungry all the time and I am not grossly obese but probably 40 pounds heavier than I should be.  But, I carry it well as I'm 6'3".  Also, I have fairly severe joint pain in my right knee when I sit down.  But, am not sure if this is just arthritis, old age or what (I turn 46 next month).  I don't seem to have great deal of energy.  I have sleep apnea which doesn't help much either.  But, I do use a cpap machine which does help but I still like I get a decent night's sleep.  Most days, I don't feel like doing much besides going to work and doing a few "chores" around the house in the evenings.

 

Another thing that I want to mention that really chaps me is the cost of the Gleevec.  When I first started on it, it cost around $2,000 per month.  I was lucky to get my first 2 months free on the tail end of the study.  Well, I went to pick up my new 30 day supply today and my pharmacist had gone up almost $200 over what it was last month!  He went up almost $200 this past February as well.  But, I know that I'm still getting a fairly "good" deal at $3,800 for 30 days worth.  This is still so wrong and I get sick every time I go to the pharmacist wondering when the next price hike will be.  I am fortunate in that my insurance covers my Gleevec at 100% after I meet my deductible ($3800).

 

Last year, I had to get a loan to pay this amount and will probably have to do so again this year as I don't have that kind of money just lying around.  It is so frustrating to have that bill facing us each January (right after Christmas!)  Also, our health insurance premiums keep going up up and up.  We are now paying almost $1,600 per month for my family of 4.  As you all know, I can't just drop this and shop for a cheaper premium!

 

Well, I am sorry to have gone on so long but would appreciate your comments about the side effects like the muscle cramps, fatigue, joint pain and how to deal with them.  Also, one more question.  I have found several Canadian pharmacies offering "generic" Gleevec for very "reasonable" for what I pay.  The last time I checked, I could get a generic for $1600 for a 3 month supply!  Is anyone here on this "generic"?  Can US residents legally order from Canadian pharmacies?  It is my understanding that the company making the "generic" is based out of India and Novartis is suing them for infringing on their patent.  I worry about the safety, quality control, etc from something made in India.  Am I crazy in thinking that way?

 

Would appreciate your input.

Dave

CaroleL   46 posts since
Apr 6, 2009
Currently Being Moderated
1. Oct 12, 2009 9:50 PM in response to: dmacarty
Re: Gleevec questions

Regarding the muscle cramps:  I also experience muscle cramps, usually during the night in toes, calves or thighs.  My onc suggested drinking a small glass of tonic water before going to bed.  I do not do that each night, but if I have a severe cramp, or more that one, I get up and drink some.  It really does help.

Doesn't taste too good, but I add a little concentrated cherry juice which helps the flavor.  (I also use the 'diet' kind, but don't think that really matters.)

 

Carole

Trey   611 posts since
Mar 27, 2009
Currently Being Moderated
2. Oct 12, 2009 10:00 PM in response to: dmacarty
Re: Gleevec questions

Welcome to a Gleevec pioneer.

 

Overall your side effects seem to be the ones many of us have. Tired, some pain, cramping muscles.  Sounds pretty normal to most of us.  But it does not make them any easier to deal with.  Some others may respond, and you can also search on each of these issues in the upper right corner for previous discussions.  (Tip: Click the magnifying glass first, then select "more options", then select CML)  Here are examples:

http://community.lls.org/message/19739#19739

http://community.lls.org/message/5312#5312

 

A summary of the ongoing Novartis patent issue in India is below:

http://www.lawyerscollective.org/node/1042

 

Generally, Novartis lost a ruling in an Indian Appellate court, but is taking the issue to the Indian Supreme Court.  Whether it is legal to buy the Indian generic Gleevec inside Canada is questionable, but it is definitely illegal to import it into the U.S. due to our patent laws.  The best news is that more drugs are being developed, so the cost of Gleevec and the others are likely to peak soon and then go down over time as competition increases.

jill   33 posts since
Sep 23, 2009
Currently Being Moderated
3. Oct 13, 2009 2:06 PM in response to: dmacarty
Re: Gleevec questions

I'm am so appreciative to all you Gleevic pioneers out there! If it wasn't for you & the rest who were in the drug trials for Gleevic I wouldn't not be one of the lucky ones to be on Gleevic now. Thank-You!!!  I agree with you,the price of Gleevic is really out of hand. I get my med's thru a mail order pharmacy because it is the only way I can get a 90 day supply thru my insurance. My co-pay is only $20., so I am very, very lucky. The price for a 90 day supply was $10,606.97! It has gone up because it was a little over $8000. for a 90 day supply. I think it's illegal to get med's from Canada.   I think our FDA is worried about their countries drugs may not be up to their standards. I do not understand why their medicines are cheaper than our's are. I think it has something to do with the amount of time, drug trial and money it costs in this country just to get a drug on the market. Who knows but it is ridiculous!

I have been on 400 mg. Gleevic since Jan. 08 and the side effects I have is water retention, 50 lb. weight loss, some nausea, muscle cramps in my calfs, exhaustion, bloating and heartburn. I take previcid twice a day for heartburn, and a water pill to help with the water retention-but my eyes, ankles and feet still swell, but not as bad. I take Zofran for nausea when I need it, and Gas-X for the bloating when I need that. So for 1 very expensive Gleevic pill a day, I have to take sometimes up to 5 other not as expensive (but still overpriced!) pills to feel well. I exercise at a gym 5 days a week for more energy and the muscle cramps.  I never believed all those people who ran marathons and exercised when they said they had more energy and felt better mentally! I thought they were crazy, but they weren't. I have never felt better. I'm 50 but I feel like I'm 20-okay maybe 30 but I can lie to myself! I don't think I will ever have to take an antidepressant as long as I keep it up-there really are endorphins released when you exercise or whatever those things are thet make you feel better! I still get a few muscle cramps but they are not as bad. I just can't seem to gain weight! This is the first time in my life I have ever had that problem! I think everyone has different problems when they take Gleevic. I don't think that mine are that bad for Chemo, I consider myself very lucky, my last BCR-ABL was positive but to low to count. So at least for the price Gleevic is doing it's job for me and I guess I would try to pay any price for that. I realize that I am a very lucky person to have the insurance that I have-I thank God everyday for what he has given me. I pray for everyone else out there who is not as lucky as me. I wish I knew what the answer was-I just try to give as much as I can to the different Charities out there like LLS. I may need them someday to help me with my med's. jill

Susan61   241 posts since
Apr 4, 2009
Currently Being Moderated
4. Oct 20, 2009 8:33 PM in response to: jill
Re: Gleevec questions

Hi Jill:  It is amazing how all of us are paying different amounts for our Gleevec, and what insurance's pay or don't pay.  I also have a mail order plan, and have to get a 90 day supply at a time.  I have been on 400mg. of Gleevec since Oct of 2000, and right now I pay $80.00 for a 3 month supply, and with all the ot

other medications that I take as well as what my husband takes we still lay out a lot of money.

     You mentioned your big weight loss.  I have the other problem with a very big weight gain.  Hopefully that 50 pounds did not make you too thin.

I have all the same symptoms as everyone else too.  Someone suggested drinking pickle juice to relieve the leg and foot cramps.  I will have to try it next time I get them real bad.  We are very fortunate that we do have these different treatments today that were not here years ago.  So I deal with it all.

Susan61   241 posts since
Apr 4, 2009
Currently Being Moderated
5. Oct 20, 2009 8:44 PM in response to: dmacarty
Re: Gleevec questions

Hi Dave:  Do not every aplogize for going on about what your going through.  Its good to share and get some input and ideas.  I see you have sleep apnea too.  I do not have it, but my husband does. He has been on a c-pap machine for a long time.  It really helps him.  Hope it does for you also.

It helps me get some sleep too LOL.  I have been on 400mg. since 2000, and was in the clinical trial for the STI-571.  I also take mine with breakfast, and I do find that I need to eat a decent breakfast so I do not get any nausea.  I just mentioned further down to another post that they say drinking some pickle juice helps with the cramping in the muscles.  I will try it when I get one of my bad attacks.  I get in the legs, feet, and the worse is the inner thigh.  I try to walk it off back and forth sometimes at 3:00 in the morning.

     I have gained a lot of weight on the Gleevec, and then sometimes I think its emotional eating for me which does not help.

 

     I do not have to meet a deductible on medications, only on my medical.  I get my 400mg. Gleevec 90 day supply through mail order for $80.00 for each script.  I do not know how we would do it if I had to pay what your  paying.  Probablly take a loan too.

 

     Personally I would not trust a generic or out of country medication at this time either.

     Just keep doing what your doing.  It seems to work out somehow.  I Thank God for where I am and not where I used to be.

gunner   35 posts since
Apr 6, 2009
Currently Being Moderated
7. Oct 21, 2009 10:14 AM in response to: dmacarty
Re: Gleevec questions

Dave-

 

I thought the patent did not expire until 2015, but perhaps it is a bit earlier.

 

There are interesting discussions on the internet about the 'generic' versions that are being produced in India. Interestingly enough, Novartis price on Gleevec (or Glivec) is something like a dollar per day in India. Once the patent runs out, the price should be more affordable. I don't mind a little rat hair and curry in my medicine, so long as it has the good stuff also. The challenge with some of the third world generics is determining if it is a legitimate formulation, or a rip-off. Once the patent is gone so that there is a legitimate generic market, the reputable generic manufacturers (from all over the world) will adjust the price accordingly.

 

In the meantime, I know that I will not be able to retire until the patent expires, or until I expire. I don't trust my companies health benefits in retirement (in todays political environment, I wouldn't count on anything). So I expect to step from working for a living directly to medicare. Hopefully sometime in the next 6 years I can figure out how that works! If not, I guess I will work until they roll me out!

 

I think I am 3 months between blood draws now. It is a month until my next appointment, and I am starting to feel nervous about what is going on.

CMLMN   25 posts since
Apr 10, 2009
Currently Being Moderated
8. Oct 21, 2009 10:21 PM in response to: dmacarty
Re: Gleevec questions

Taking calcium/magnesium supplements helps me with muscle cramps.  I can see a big difference on the days I don't take calcium/magnesium.    At first just calcium helped me but then it stopped and only works in combination with magnesium. 

ib1999   1 posts since
Nov 30, 2009
Currently Being Moderated
9. Nov 30, 2009 1:54 PM in response to: dmacarty
Re: Gleevec questions

Try PSI (patient services inc. ) for your co-pay. They are very helpfull and may take care of your co-pay 100%. Good luck.

kinadra   3 posts since
Nov 30, 2009
Currently Being Moderated
10. Nov 30, 2009 3:21 PM in response to: dmacarty
Re: Gleevec questions

-hello:)

i am allso new to this forum and im glad i found it..

about trhe side effects, for me exept for the first month i didnt suffer anything, im sick since 1/2005..got diagnozed with 150000 wbc if i remember corectly..

on the first month the pain was horrible, but after that it fade away, my side eefects were:

pain in the muscles

cramps

baggy eyes (they were so swalen i could hardly open them)..

memory loss for the short term (that i have till today lol)

my hearing is allso abit down..

what i did to keep my body up and reafy to go is healthy and organic nutrition,allmost vegi, and i took all the carbohydrates out (pasta, regolar bread and even potatos), i've heard about the last part from few friends in a group of cml that we have, the edema disapeard after few days..

latly i do have a funny side effect, i have kind of a cramps, but in my face, when i lough i suddenly stuck with the smile, and that hurts lol..it took me awile to understand its from the glivec..

about the pains, i go to massage from time to time and i know that few ppl i know drink somthing with magniziom and do sports,,

(we are 100 ppl group and unfurtently its getting bigger every year)..

im sorry to hear glivec cost that much in your country, im not framilier with the kind you are talking about, i didnt know that there was more then one type of it..

what does ppl who dosent have money do?

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