15 replies to this topic

[mountaindreamer1]

I was just wondering...

My husband is having a hard time with the gleevec itself...

His wbc is coming down alot...but the drug is doing him in. He can not be up for more than an hour with out going back to bed. If he pushes it he gets perfuse sweating and nausea, headaches. He tried going to my brothers for dinner on christmas ( who lives 5 minutes away) and half way through dinner had sweat pouring down his head,had to get up from the dinner table and go to the bathroom. Fell asleep on the couch 20 minutes later and we just went home. He tried going to his mothers tonight  and once again 1/2 through dinner had to get up and lay down and slept all through dinner and missed the family visit ( brother drove 3 hours just to visit with him).

He is having memory loss, and hair loss and diahrrea. And he is suppose to take this forever.

He keeps saying how and I going to be able to go back to work?

Charlie has been roaming the internet and asked me when he was having a meltdown the other day about stem cell transplants and that would be a cure and maybe than he would not need to be on these meds forever.

can anyone give some information on this....

thank you,

dawn

[Lisamm]

When was he diagnoised?

[pinkydo123]

Hi!! From what I understand there has to be certain criteria in place before they will move you're hubby to transplant.Abnormal high -risk cytogenetics/disease progression/...Most Doctor's are not going to go to BMT unless it is indicated by certain factors.It is a very risky procedure with very,very high-dose chemo.Unless he is in blast crisis,or chronic phase with no response to gleevec ,I would not think that is indicated in CML as a first line of defense,but I'm no Doctor.Good Luck to you!

[mountaindreamer1]

He is only starting his second month, so I know the side effects can be worse in the begining. The gleveec is bringing down the wbc but he is so sick from it.

The doctor mentioned in the future switching meds if it does not change in the future,

He is getting so agravated....He literally cannot do anything without becoming ill.

thanks for listening

dawn

[mountaindreamer1]

That is what I thought...all I do is read lately..

He wants to feel better and feels horrible all the time.

He is looking for a way down the road to do this...he is scared to death of feeling like this for years to come..

dawn

[Sloater]

Dawn,

There are other alternatives...  Sprycel is one that I am on.  The side effects are very different and may not be as impacting as Gleevec.   Ask your Onc about this alternative.  I have had a lot of success.

Good Luck, and God bless.

Sloater

[PhilB]

Hi Dawn,

As the others have said, there are other drugs out there and these should definitely be tried before moving to transplant if you can get access to them.  BMT is a high risk strategy and even if you survive it has it's own potentially very nasty long term problems from GVHD - and once you've gone down that road there's no turning back.  All three drugs have very different side effects profiles and there is no correlation between how they impact people - just because you have bad side effects on one doesn't make you any more likely to have bad side effects on the others.

Best of luck

Phil

[Trey]

It may seem tough now, but things will improve although it will take a few months.  As I have said before, there is a war raging inside him.  But he is responding well, so this phase will not be his long term experience.  Things will get better.  The strength will return, although it does take time.

You should realize that most stem cell transplant (SCT) patients still take the CML drugs after transplant due to the risk of CML relapse.  Although SCT should remain an option for those with CML, it is best reserved as the last resort option to be used when all else fails, since the statistics are not very encouraging regarding SCTs.  Approximately 30% do not survive the first few years due to the transplant process.  Of those who do survive, about 30% have difficult long term autoimmune issues (graft vs host disease -- GVHD) that can be very painful.  Also, the high dose chemo and radiation often can damage organs, and they can cause a fairly significant rate of secondary cancers.  And there is a fairly significant rate of relapse of the CML, putting the person right back where they were before, only in worse shape because of the chemo and radiation exposure.

I am not anti-transplant.  It should remain an option.  But if he feels sick now, the transplant process could make the current status seem rather mild by comparison.  Some people can sail through an SCT easily, but that is not the normal experience.  There is a very good reason why the CML drugs have made SCTs a rare treatment for CML.

[simone4]

Dawn, I'm so sorry your husband is having such horrible side effects from Gleevec.

I had very similar side effects, including bone pain in my legs and hips.  The fatigue

was profound.  But after 3 months it began to abate and I began to feel better.

Like Trey said, it will not always be like this. It is such a shock to the body and to

the mind that only sleep can really console us.

I would like to thank him for his work in the spay/neuter business.  I have several

feral cat colonies and my clinic has helped me tremendously. Maybe his workplace

will be patient and let him have some time to adjust to Gleevec.

Good luck to you both. Please believe us--this stage will pass.

Simone

[mountaindreamer1]

thank you once again for all your info.

charlie had a  major meltdown last week.....but up till then was handling things "to well" if that makes any sense.

I am so glad to have found this site and everyone like yourself that always are there to help....

thanks again,

dawn

[mountaindreamer1]

Charlie and I both work at a shelter together and I manage the spay and neuter clinic and charlie is a vet tech and helps in surgery as well as helps the shelter with maintance in the shelter.

Many people have donated their sick days to charlie so he has at least a month..

I am so scared of him loosing his job as the insurance is taking care of the gleevec.

It is like a catch 22 isn't it..

dawn

[MomMom]

Hi, Dawn. All I can say is the same as all the others.  The fatigue, nausea, other gastro problems come with the medication.  It does get better.  I had a really hard time at first. I felt like while Gleevec was doing it's thing killing off the leukemia cells, it was destroying my innards as well.  I still remember sleeping through dinners and taking to bed at odd times.  I still get tired and will come home from work and hit the couch for two hours.  A freight train could run through the house and it wouldn't wake me.

On the bright side,there are meds out there to help with the side effect of Gleevec. My doc gave me nausea meds, sharts meds, meds for GERD, among other things.  I know he feels low.  Believe me, we have all been there.  It gets better. He may still have episodes but they will (excuse the pun, folks) pass.  My latest are a series of eye bleeds  Nothing dangerous, but scary and scary looking.   I am also taking an antidepressant

I lost a lot of hair, In fact, it keeps thinning. Your hubby looks like he has a very handsome mane. Hopefully, he will keep it.  Mine was very thick and now it is much more manageable.  Silver lining for me. Now, if it will just stop falling out.  I have also had problems with skin breakouts.  That's when you get meds for that.  So, see.  It does get better and you learn how to manage it, too.

At my age, I am past the preferred upper age limit for a transplant, and in one way that's good.  There is no one in my family who would or could qualify to donate. I feel the anxiousness that you are both feeling as you realize this is a life style. You live with CML forever or until a cure is developed.  You also learn to value each day as it comes.  Renew your spirit every day.  You already do good with the animals your work with.  Thank you for that. Find peace and comfort.

By the way.  My daughter's friend attended the conference Trey gave the link to.  He wanted to shop for a trial for me to be a part of.  I don't think he found one.  It looked to me like the science was good for a potential cure, but it also looked like they were still in the rat stage of testing.  I still think that a cure will come.  My optimistic attitude just can't help it.

Way too long a post.  Been away from the forum for a while.

MomMom

[mountaindreamer1]

that beautiful head of red hair is gone now....

I think that added to the meltdown also...kept thining and thining alot over the last 2 weeks and when he took his ponytail clip out a huge bunch of hair came with it. He looked at me and said it is time. Hopefully it will grow back in a few months.

[MomMom]

Wow.  That was a transformation!  Great picture and still a handsome guy.  Mine is pretty thin and getting thinner.  I say if it gets spotty, I will go bald for a while.  I have a huge birthmark that runs up my neck into my hair and for shock and awe I would go to WalMart of somewhere really public.  I can see people crossing themselves now at the specticle.

Kay (MomMom)

[J.T.]

Hi Trey,

I was just browsing some old forums and came across this one. I have posted here many times but just a quick recap.

Age - 44

DX - March 2008 with CML

On Gleevic one year - no response

On Sprycel currently - little to no response

Doctors have decided I need a SCT to be done end of June

Have a sibling donor (sister)

I have read numerous post here as well as a lot of research on the Internet. I cannot find much these days with regards to SCT with CML so your stats are interesting - although scary - to read. Do you know of any other sites or have any other thoughts on what is ahead of me. As always I understand everyone's situation is different but I am the type who likes to inform myself as much as possible - realizing everything I read is not going to be good. My oncologist went over the serious risk so I am aware of them. I understand that the success of Gleevic and Sprycel have greatly reduced the number of transplants needed but I was wondering the outcome for those of us that are in need of transplants.

I always appreciate your thoughts.

Thanks,

Take care,

J.T.

[Trey]

J.T.,

You may want to read the "Transplant" section of my blog site where I have compiled many older postings:

http://treyscml.blogspot.com/

Did you have a Kinase Mutation Test done to see if a mutation is causing the lack of response?  There are a couple mutations where Tasigna works better than Sprycel.  Either way I would try Tasigna before going with an SCT if Sprycel is not working.

You can also read the blogs of several folks with who had an SCT.  There are many success stories.  It is best to focus on them.

http://www.google.com/#hl=en&source=hp&q=CML+blog+transplant&aq=f&aqi=&aql=&oq=&fp=439483403d199a5c

It gives me no joy to point out the stats on SCTs.  Younger is better, so you have some advantage there.  And if you sister is a perfect match, that helps with survival.  In general, the docs usually don't provide adequate information.  Transplants are what they do, so of course they believe in them.  I think SCTs are an important part of the CML treatment program, but as a last resort.

I would encourage you to look into the "mini transplant" issue -- no TBI and little chemo.  I am not recommending it, since I do not have enough info on your case,  just suggesting you look at it.