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Does the bad news ever end?

Fortunately I haven't needed treatment yet, but that doesn't stop me from thinking about all the potential treatments that are available to me.

What seems to be recognized as the one of the most effective treatments for MCL, is a protocol known as HyperCVAD. Without going into too much detail, I'll just say the treatment is so severe, you have to be hospitalized for several days at a time when receiving the treatment.

CHOP is another treatment, similar to HyperCVAD, but missing a few of the more potent drugs which necessitate the need for hospitalization. Still CHOP relies on Doxorubicin (the H in CHOP for Hydrodoxorubicin, or the A in HyperCVAD for Adriamycin), which is known to cause heart problems, and because of that is lifetime dose limited.

I refuse to take that drug, for obvious reasons.

Another lesser choice is a protocol known as CVP, which doesn't include the Adriamycin/Doxirubicin. Still it includes Vincristin/Oncovin (the V in HyperCVAD or O in CHOP), which while Edie's oncologist calls it the closest thing to sugar water, as chemo drugs go, it is one of the few drugs known to cause irreversible neuropathy.

There are other potential treatment protocols available, but as you might guess, have their own unique problems, which I won't get into here.

As you might have surmised by now, while there are choices, there aren't many good choices.

Then just this evening, I learned, what I thought was my best possible choice for a treatment, with the least possible side effects and potential problems, has it's own problems.

That treatment, single agent Rituxan, which I had pretty much set my mind on as first line treatment, when the time came, has it's own problems.
According to the [FDA], people taking Rituxan may be at risk of developing a severe viral infection called Progressive Mulitfocal Leukoencephalopath (PML).

........

The condition is caused by a virus that destroys the sheath that covers the nerves. Symptoms include mental deterioration, vision loss, speech disturbances, and movement abnormalities or paralysis.

That's just great!

Now on top of potential heart problems, irreversible nueropathy, and countless other problems, the potential for paralysis, vision loss etc. is a possibility.

Doesn't the bad news ever end?
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Comments

Diane said…
I'm sorry you are having such fears about chemo for the MCL. I know it's not perfect by any means, but my husband and several others that we know have gone through the Hyper C Vad with Rituxin and although they did have some serious side effects, today they are all doing well. My husband and the others have been in remission for 2 1/2 to 4 yrs and are all feeling great. My husband actually had to have a quadruple by pass two days into his first round of chemo...this was not chemo related and in his opinion he feels the chemo triggered enough symptoms to get a cardiologist involved. He would probably have died had he not started on the chem to cause the warning bells to begin ringing. He has no lasting effects of the chemo and he will turn 70 in a few months. Sometimes you just have to take your best shot and hope for the best. You can talk yourself into or out of anything if you work at it hard enough. By the way, I hope your wife is doing well.
4:57 AM
Marc said…
Thanks Diane!

You're absolutely correct, many people have gone through chemotherapy, and are doing fine afterwards, but on the same note many have real problems with it, and aren't doing fine, i.e. PN, heart problems etc.

And neither does it take away the fact chemotherapy really isn't medicine.

Essentially chemo consists of infusing deadly chemicals into the body, which along with killing the cancer cells also kill the good cells, which is what causes all the problems.

The unfortunate part is, with the exception of Rituxan (which has its own problems), there are essentially no other good alternatives, so it is inevitable I will need something.

One of the problems is, I just know too much, and I'm dreading that decision should it ever come.

Maybe there's something to that old saying,
ignorance is bliss
6:27 AM
John said…
Hi Marc. I found your post about these possible treatment methods you mentioned by searching for
progressive multifocal leukoencephalopathy pml symptoms. The truth is that I was researching about pml complication regarding another drug, not Rituxan, and by doing so I found out a few things about this disease. The possibility of PML complication is high if your immune system have been compromised before, either by drugs or by another disease. I cant advise you neither for or against the drug since i`m not a medical professional, but I can hopefully help with my opinion and view on the issue.
Ok, now I realized that this post is from 2007. Which treatment did you choose finally and how is working out for you?
I wish well and all the best.

John.
a fellow blogger.
1:41 AM
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