My sweet Alice, I am watching your daily diary everyday.

September 29, 2009 at 12:07 pm

Hi Alice,
Oh, how I wish I could be in your shoes right now.
We have talked about about it through our private emails to each other.
I have been a huge supporter of you from day 1, when I sent those letters fighting for insurance coverage. I start my day, everyday, going to this forum, and watching to see your latest updates, with much anticipation.
I am SO glad you didn’t have any side effects from the Cytoxan.

I am hoping for the very best, that this stem cell program will work for you, and put the CIDP into remission. And I must wait, if I can live long enough, to make it to where the Stem Cell Program is out of the “experimental stage”, and it to be listed as a stated protocol of treatment for CIDP, so that insurance companies HAVE to cover the cost.

I am dieing from the complications of CIDP. I have been told this by 4 of the main doctors on my team of 7 doctors, (my primary care doctor, my rheumatologist who is in charge of my chemotherapy, and my neuro, and my Pulmonologist). There are the few 5% of CIDP sufferers where the protocol of treatments DO NOT work. Each year, we lose a couple of people here on the forum, and they pass on. I have been fighting this for the past years with going through ALL the listed protocol of treatments, to no avail. And my health keeps declining.
We MUST keep this in mind, that CIDP is an ugly sister disease to MS and ALS. I have had long talks with my main 4 doctors, about what to expect as time goes on, and I will eventually pass on. I have accepted this–not that I want to, but there is nothing left I can do, EXCEPT FOR THE POSSIBILITY OF THIS STEM CELL PROGRAM. But, it has to come out of the experimental stage, as I have to rely on my own insurance to cover it. I was told a few years ago, that I could be accepted into the program, but would have to pay for it on my own. I do not have the $10,000.00+ needed to cover the costs.
So, I think Alice will be Dr. Burt’s last patient, since his research program states that it ends in 2010. And he can then do his write-up of how the program worked, and report it to the Neurology Community. This is where it then needs to be accepted as a true protocol of treatment for CIDP. Once the neuros start using it, then the insurance companies will HAVE TO cover it.
Until then…I wait…IF I CAN MAKE IT TO THEN…

But, since this thread is talking about Cytoxan, I have to step in and make some comments.
I have been on Cytoxan for over 2 1/2 years now. It is the last possible protocol of treatment I can try. I went through ALL the other treatments, each one for at least a year each, to no avail.
BUT, prior to going on the Cytoxan, I was declining RAPIDLY.
The Cytoxan slowed the progression of the CIDP greatly, though it is still progressing.

The Rheumatologist, who is in charge of administering the chemotherapy, in conjunction with my neuro, has told me the pharmacist at the hospital is very worried that I have been on Cytoxan for so long. BUT THERE IS NOTHING LEFT FOR ME TO TRY. At least it slowed down the progression.
Three summers ago, I was told I only had about 2 years left to live. My neuro feels that by using the Cytoxan, it extended my life another 2 years.
So, by what the pharmacist said that he never had a patient on Cytoxan for this long, is that I may expect severe side effects from being on the Cytoxan for so long, and what it is doing to my bone marrow. But what choice do I have?

I have good months and bad months, on the Cytoxan–you just never know. Though the hot summer months, from July to October, (I am in southern California, and summer goes from June to October, with August/September/October being the hottest months), are usually my worst months, as the heat exacerbates the side effects. That would be nausea, (but I have 3 different pills to control that), and a total wipeout of energy for the first week after the initial dose. I was lucky–I only lost about half of my hair instead of all of it. Though, every day when I comb my hair, at the end, my comb is filled with a bunch of hair. Usually the day of the infusion, and the day after, I feel okay. But it is the days after, sometimes for up to two weeks, I feel crappy. I am on Ritalin 20mg, twice each morning, to fight the great fatigue.

You have to remember, this is a toxic chemical they are putting into your veins. The neuros only like to use this as a last resort. There are more side effects involved with Cytoxan, especially what it is doing to my bone marrow.

I DO suggest the Cytoxan to others where the others have tried the normal protocol of treatment. AS ALL OF US KNOW, EVERYBODY IS DIFFERENT IN TRYING THE DIFFERENT TREATMENTS, AND HOW THEY WORK ON US.
The Cytoxan worked for Pam, as well as others. You just don’t know what is going to work for each person.

But, I will now wait for the Stem Cell Program to come out of the experimental stage, if I can last that long. Out of 11 patients in the program, only with 2 it didn’t work. I call that VERY good odds of trying the program as a normal protocol. Nine people no longer have to deal with this ugly disease.

Keep at it, Alice–I think of you daily! You are the “darling” of this forum right now, and all eyes are on you, with everyone sending their best wishes.