Here I go again

Last week, I had both a PET Scan and a surgical biopsy to determine the extent of my cancer relapse. Today, we met with Dr. Friedman to get the results and to plan the course of action regarding treatment.

First, Dr. Friedman confirmed it was a relapse of the Mantle Cell Lymphoma I was diagnosed with back in 2009.

Through a six-month regimen of EPOCH-R and an autologous stem-cell transplant, I was able to extend my remission to almost 10 years with a disease that has a 3-5 year life span.

We plan to be nearly as aggressive in treating MCL this time.

Dr. Friedman discussed with us a couple of options and I'll meet soon with Dr. Kristen Boughan, an expert in stem cell transplants to further discuss the options of treating the disease.

First, there's a pill called Acalabrutinib (or Calquence), which is a drug designed to treat MCL patients who have received at least one prior treatment. With this option, I'd take one 100mg pill twice per day...for a long time...maybe the rest of my life.

The benefits to this option should be obvious...no IV chemo necessary, ease of dosing and there would be no hair loss. Most of the side effects are typical to any drug: diarrhea, fatigue, etc.

There is a downside too.

Dr. Friedman isn't sure how long I'd have to take the pills, probably the rest of my life, and the out of pocket cost is about $8,000 per month.

Secondly, we discussed a regimen that would include IV drugs including Bendeka, Rituxan (my favorite!) and a Velcade shot every 28 days. The infusions would occur for six hours on Mondays and Thursdays for two weeks and then I'd go 28 days before the next infusion.

New parking space

We also discussed another stem cell transplant but this time using donor cells.

In speaking with Dr. Friedman, Paulette and I both thought it would be best to go with the second option rather than to take pills forever. Maybe we don't believe a pill could be as effective as IV chemo? It's probably a little bit of that and believing what worked in the past should work again.

At any rate, we did decide to start chemo next week. I'll have my first infusion on Friday, May 10.

Between now and then everything could change based on my upcoming conversation with Dr. Boughan.

I'm not opposed to another stem cell transplant but I will fight the donor-transplant every step of the way...until I reluctantly head to the hospital for another month to do it.

Why?

Ten years ago, I researched stem cell transplants. I followed several blogs of patients who had transplants.

Autologous transplant patients seemed to have the most success and fewest side effects. I can attest to that as I had an autologous transplant and have few complaints, aside from the high-dose chemo the first week in the hospital and the three additional weeks I spent in that room overlooking the Church of the Covenant on Euclid Avenue.

The donor--or allogeneic--transplant patients were the ones that shared their horror stories.

With an allogeneic transplant, we first must find a donor. We went through that process 10 years ago and nobody in my family was a perfect match (and I wouldn't want some of their cells anyway).

I can't quite remember why we settled on the autologous transplant but I assume it had something to do with the lack of a donor match.

After the transplant, the patient's body fights off the donor cells. That's called Graft-versus-Host Disease (GVHD).

From the Leukemia and Lymphoma Society:

GVHD occurs when the donor’s T cells (the graft) view the patient’s healthy cells (the host) as foreign, and attack and damage them. Graft-versus-host disease can be mild, moderate or severe. In some cases, it can be life-threatening.

In the blogs I read, each patient was met with moderate to severe issues.

I'm all for extending my life. But, I'm all in for quality as opposed to quantity. I don't know that I'm ready to introduce more problems in my body. I have enough.

Ten years ago, I'd have done anything I needed to in order to see my children grow up--and I still will. However, I'd like to look at every other option before settling for the donor transplant.

That's where we're at and I hope things go as planned.

I'll keep you up to date here on my blog rather than to use CaringBridge again.

After last week, when I first updated my status on Facebook, I went back to CaringBridge and read through my last journey. Some of that stuff still makes me tear up and I kind of want to turn the page.

New issue...new blog...but I will write as that was one of the most therapeutic things I did during my last encounter with MCL.

Until next time...