32 replies to this topic

[pamsouth]

Some time ago back in 2005/2006 there was Trial Exp, on 400mg vs 800mg. The deal/question was is it better to have a quicker response or log reduction in a horter time, then over the long run.

I believe at one of the seminars in Indianapolis or it may have been one of the phone seminars, with the leading experts, it didn't make any difference how fast you get there.

I am finding that ONC are pressureing many gleevec patients to make the switch as the Gleevec patents will be expiring and the Fed government has cut the research funding.

I also am impressed that since Gleevec went on trial in 1997 over 80 % of the patients are still alive and doing well.

I can remember being DX in 2005 in that in a few years we will come up with the cure, I beleive a lot of us are still asking with all this research money where is the CURE!!

[pamsouth]

Hi Rapunzel,  Ilive in the indpl area and will soon be 64 yrs. I was diagnosed with CML IN 2005 and was on hydrox for a month then Gleevec.  About a year ago my Oncologist mentioned Tasingna, then in October 2011 she mentioned it again, as my labs were all over the place.  I called LLS and made sure i understood how to read my PCR, and yes I did.  LLS agreed the PCR lab report were very questionable as to accuracy as there was a sudden jump in counts and both percentages for the b3a2 anf b2a2 were the same, twice in a row, which would be nearly impossible and a strange coincidence let a lone a week later the PCR had dropped to one being undetectable and the other at 12%d, which was a huge drop.  The doctor even said there is a lot of room for error on these PCR.  SO I decided to call the lab in New Jersey, she said they had changed their numeric scale to an international scale.  I decided to go out on the discussion board and found a lot of people were questioning and trying to understand the PCR.  In 2005 I flew to MD Anderson in Houston Tx where they do their labs in house and went thru an educational program.  I learned the pcr test is very delegate and should be done in house very quickly as it is a lengthy process and the blood can become very tainted.  So I asked my doctor if there was anywhere in Indiana that did the labs on site and interpreted them on sight, she said no.  Anyhow I went to IU Simon Cancer and they said they do their labs on sight and interpret them as well.  The IU Doctor said she must have meant to where she was contracted to.  Also the Doctor at IU said the guidelines are set for the whole world.  He said he did not necessarily go my the guidelines and some patients even chose to go off doctors for a year and back on them later.  You can't just lump billions of people in one guideline.  Not only that with ever new test that come out the guidelines change. You can't eradicate all the leukemia cells.  My theory for myself only is that I would like to stay on a drug and take a dose that gives me a quality of life that I desire, even if it meant a shorter life.,  After all these drugs can become very toxic and who know the long term side effects.  Sometimes we don't hear of long terms side effects of new drugs for 10, 15, 20 years or so then they pull them off the shelf.  So I think there are a lot of unanswered question, or that there is no way they could possible know how these chemical are going to work in the long haul.  I also was thinking there is a big push for the newer patients.  Gleevec will expire in July 2005 according to LLS.  I read somewhere that the price of Gleevec will drop to about $5.00 to $10.00 a pill.  The newer drugs are already more expensive the Gleevec. Even though I have insurance and there is assistant I think these new expensive drugs are putting a huge burden on our health care as we all end up paying.  I sometimes wonder how much of the money goes in research for the CURE or in the hands of Big Pharma. Other countries are much cheaper but in the US we pay a high price.  Anyhow I decided to stay on Gleevec and change doctors.  I see your post was written 11 months ago and was wondering what drug you decided on and how you were doing?

[Rapunzel]

Hi Pam,

Yes, I shifted to Tasigna in Jan. 2011 and have been on Tasigna since then.  Tasigna has worked well for me though it has not brought me to MMR/PCRU yet.  As soon as I shifted to Tasigna, I had severe body pain (hands, legs, back etc.) for about a week.  My doctor suggested that I take Tylenol/Advil.  I decided against doing that as I did not want to overload my system with more drugs.  In a about a week the pain subsided to where it became bearable and in less than 2 weeks, the pain was fully gone.  I have been pain free ever since.

The second and more troublesome side effect was consitpation.  I suffered through terrible constipation for much of this year and am only now getting better.  I now consciously eat a high fiber diet, drink lots of water and exercise almost every day.

Hope this helps!

Rapunzel

[pamsouth]

What about swelling?  That seems to be the worst for taking Gleevec, but I take a diuretic.  Constant bone pain, but I don't know if that is more from aging or what.  Constipation, I seem to be able to manage that with more fluid and exercise and fiber.  However I would rather up my dose of Gleevec then switch to another drug, however I am sure that would cause more severe swelling and severe constipation and brain fog.  I am beginning to think lots of patients never reach MMR unless they are on a high dose which probably becomes very toxic.  What dose are you on?  Do you think you would have done just as well on Gleevec?  Just asking since Gleevec will become a generic inexpensive drug in 2015.  Where Tasigna was patent in 2015, LLS said they do not know when the other patents will expire.  It is always a concern of mine that my insurance will stop paying.  I do not their are like Novartis co-pays and stuff but you do have to fill out an application with certain guideline not sure I would fit into. I would hate to bankrupt my husband and I in our senior years, when Gleevec will become much cheaper.  Glad you are now to well on Tasigna.  i have heard other say they have been hospitalized with terrible rashes, etc.  I guess no really know how chemicals will effect each individual.  I am going to have to follow up with the doc who said some patient go off their med's for a year then back on, I wonder if a drug free holiday, helps protect the organs, then you can just go back on the med's.  I don't know just thinking out loud, kind of scare to take nothing.

Happy Thanksgiving and thanks for your input.  Pam

[Rapunzel]

Pam,

No, I ahve not had any kind of swelling/rash.  It is true that we all react differently to these chemicals.  With Gleevec I had GI issues and also gained about 30 lbs. weight in a year.  Even though the weight gain did not have other impact (like increase cholestrol or blood sugar), I felt that it was only a matter of time before those problems manifested themselves.  With Tasigna I have lost about 15 of the 30 lbs that I gained.  I still have a very long way to go in terms of reaching optimal health (non-CML related).

You are correct about patent expiring in 2015 for Gleevec.  Thereafter the market will be flooded with Generics and it will be cheaper whereas Tasigna and Sprycell will continue to be costlier for a long time.  From your age it appears that you will be eligible for Soc. Sec. either now or shortly and prescription drug co-pays become, at least in part, your responsibility.  So you need to weigh that in when making a decision about switching drugs.

As for dosage increase on Gleevec--I am not sure.  There are others that are more knowledgeable about those matters.

Thanks and have a great Thanksgiving!

Rapunzel.

[Judy2]

Hi Rapunzel and pamsouth. Speaking of Tasigna and rashes- I just saw my onc. today, he was soooo nice. I was very worried about the rash I have developed on my face due to the Tasigna but felt reassured after I saw him. I was afraid if the Gleevec wasn't working and I couldn't take the Tasigna  I would be down to just one more drug, the Sprycel. It was a good thing I checked it out. I need to go off the Tasigna for one week and if the rash is better at the end of the week I can then restart the Tasigna, but only one pill per day at first. So now I feel that I may be able to take the Tasigna, it's not a done deal yet. These meds. may be good for the CML  but I think the rest of our bodies pay the price.

Judy

[Judy2]

Hi Pamsouth. I was rereading your post re:Tasigna and you said you have heard of some people who said they had to be hospitalized because of Tasigna related rashes. Can you tell me more about that as I may have to restart Tasigna next week and am nervous about it as Tasigna gave me a very bad rash? Thanks.

Judy

[pamsouth]

Hi Judy2.  It took a little bit to find it as it was hidden under the subject "WHY DO I FELL LKE I AM IN A FOG"

3. Re: Why do I feel like I'm in a fog?

Hi Judy2, I took me awhile to find it as it was hidden under the subject "WHY DO I FEEL LIKE I AM IN A FOG" I copied it an pasted it below.  I remember it stuck in my mind.  As when I was little and now and then I have had terrible bouts with poison Ivy and such and remember getting shots ever year as a child and in 2000 going on steroids.  It causes me to shudder to think of a terrible rash that would put you in a hospital.  Also read another one under Switch from Gleevec to Tasigna April 22, 2011 #7 Switch from Gleevec to tasigna but had elevated liver, lost hair, rash, went back on Gleevec but going to try Sprycel." Sounds like different strokes for different folks.  I am not without some side effects from Gleevec, mostly my severe bone pain, and some swelling.  But I just as soon live with it then change.  Don't think the bone problems will change.  I was reading an article that Gleevec may cause some loss fo bone minerals, but I have had problems with bone pain for some time and chiropractor and massage and exercise and vitamins help.

John Nov 12, 2011 9:51 PM (in response to pammartin)

I have tried Sprycel, and Tasigna. My body didn't do too well with the both of them. Tasigna put me in the hospital. Gleevec is the only drug that my body seems to tolerate, but the brain fog is really putting a damper on my daily life. I'm a single dad with a seven year old, and it's hard for me when he's with me, and my brain is all foggy. I'll probably take about a two week vacation from Gleevec, so the brain will un fog. Then go back on it.

[pamsouth]

Hey Judy I must not have copied all the article correctly,  go to "Why do I feel like I'm in a fog" It is Johns reply in response to William Foxboro. "Tasigna put me in hospital, heavy rash on face and chect.  Same problem with Sprycel.  Ok on Gleevec except brain fog."   But there are other article where patients seem to be doing ok on Tasigna after a few months or so.

[Judy2]

Thanks Pamsouth for taking the time to reply. I'm sending you an email to your private  address.

Judy

[DancingRain]

I am going to reply to these posts even though it is closed.

I've been on Tasigna for over a year and have dealt with many of the issues that have been stated here.

The main effect that I have with this drug is he red rash over my entire body,

which affects the hair follicles on the skin. The rash causes white heads to form

and come out when scratched. This is a particular problem with my eye lashes.

I went to the dermatologist early last year and tried all the prescription creams; none of

which worked. So I have accepted this fate and used Gold Bond intensive cream

with aloe right now. For the itch, I have stuck with my allergy tablets: Allegra D in the am

and Allegra in the pm which I get from a pharmacy in Canada because it is cheaper.

For the eyelashes, I usehot water compresses to loosen the skin ip do I can flick the white

exudate from hair follicles caused by Tasigna.

For the pain (which I don't have any), I take magnesium chloride three times a day.

I started on this when I was on Gleevec and it has done a wonderful job of keeping the pain away.

The liver enzymes were quite high when I first started Tasigna, but now it has stabilized.

Only the AST is a little high, which is fine with the oncologist.

For the constipation which I have experienced like the rest of us, the magnesium

supplements help along with Omega 3-6-9 capsule with each meal. Any Omega 3 will help.

Also diet changes to include water, fresh fruit, veggies, and exercise.

I have so much more energy than being on Gleevec. Yes, I have side effects. So what?

Everything in life has consequences. I am thankful for everyday that I have medication

to keep my CML at bay. I can live with a little discomfort and I have!

Just need to focus on our blessings in life.

Have a good week  

Angie

[ChrisC]

When I was first on Gleevec, after a couple of months I noticed that I had white specs on my eyelids, face, scalp, and in my ears. Over the months I tried lots of things, including tea tree oil, but the only thing that worked was a combination of things that the dermatologist had me try. BTW, she claimed that in the U.S. we don't acknowledge any demodex mites, but the fellow dispensing the creams and pills for me to take checked my lab report and it showed that indeed they'd found them; perhaps it was something else, I didn't really care, I just wanted it to gone! Here is the article that set me on the quest to get help:

http://www.eyeworld....le.php?sid=4381

Good luck, everyone.

ChrisC

[DancingRain]

Thanks for the info Chris.

I had my eyes checked already. Not all the follicles are affected.

I have squamous blepharitis. An inflammation of the follicles. Warm water compresses really help to relieve it.

That is what he recommended.

Mites on the eyelids...never knew that! I've had a couple of patients with mites before! Just the thought of that makes me itch!

Have a good week  

Angie