Saturday, January 2, 2010

Well Ollie, what should we do next?

Twas a few days after New Years and all through the house,
Not a creature was stirring, not even a louse (thank god!)
The kids were at the Aunts and Mom & Dad are a cleaning,
Christmas is put away and it's time to do preening -
Stuffed animals, toys, clothes, and plenty of other stuff,
Either in the bin or out to goodwill - looking around it's still not enough!

But enough about the holidays - we're filled with good cheer and my last doctor visit shows I'm in a form of chemo driven remission - they did use the term CR (complete remission) and I had reached that after Cycle2. Apparently I am ahead of the bell curve (for once in my life I can tell my mother I'm ahead of the bell curve!) with my reaction to the chemo. Based upon these results I'm continuing on Cycle4 but we have removed the Revlimid and I am only getting the Velcade and Dexomethazone (so no RVD, just VD - had to add that so Danny will laugh!)

Revlimid, as I understand what I've been told, will inhibit the production of the t-cells needed for harvest. It's necessary that a full four weeks have past after Rev before the harvesting can take place. Since I've so drastically dropped they expect that my plasma cell penetration, which last was 80% is down to normal numbers (I'm saying 2-5% but I have no idea what the actual percentage, is - what can I stay, I didn't stay at the Holiday Inn Express last night!) So my body is in perfect position for the harvest and using the Rev could potentially make it more difficult to get the good cells I need at time of harvest. So I'm off the Rev for now in prep for the harvesting. Here's where it gets fun....

My schedule as it is thus far (with explanations of all below)
  • 5 Jan, 8 Jan, 12 Jan - Cycle4 continues - VD chemo sessions in morning
  • 12 Jan - after chemo I have a full regimen of pre-harvest tests (day out of the office)
  • 29 Jan - chemo with Cytoxin (below) 5 hours on an iv, prep for harvest (day out of the office)
  • 3 Feb - Neupogen injections (below) to amp up the t-cells
  • 4 or 5 Feb - insertion of a 'portocath' in my neck/chest area (day out of the office)
  • 8 Feb - start harvesting, 6 hours per day in a chair pulling out the good stuff (it's harvest time - in the middle of winter!) (week out of the office)
First, the explanations (with hopefully useful links to Wikipedia for those that truly desire to be that As Seen On TV Doctor).
Cytoxin - the link is to Wikipedia but my understanding is Cytoxin is used to prep for the harvesting and specifically will assist in pushing back the bad proteins and prepping the body for the actual harvest. This is a more rigorous chemo therapy and could cause nausea and hair loss (although that varies from patient to patient, so perhaps I'll get that close haircut just in case! :)
Neupogen - "is a granulocyte colony-stimulating factor (G-CSF) analog used to stimulate the proliferation and differentiation of granulocytes." Ok - did everyone get that? This is like steroids for t-cells and will amp them up so that when the harvesting takes place we're getting the most bang for the buck. No real side effects aside from potential bone pain which will be less than I experienced from the Zometa.
Portacath - This will be my Borg plug!! A catheter, inserted into a vein, in my upper chest area. This will be in for the duration of the harvesting. I need to be careful in the shower to avoid getting the bandaging wet and I need to be careful with the kids as they can't be bangin on daddy's plug!
Harvesting - the allotted time for harvesting is 3-5 days. I'm allowing a week (5 days) as I'm unsure how long the entire process will take. Having said that, the doctors are saying due to my good numbers and current physical health (I have them all fooled: insert evil, world-dominating doctor laugh here) we may be able to get all we need within two days and once counts are confirmed (number of t-cells taken) we'll be able to remove the portacath. I don't expect there will be any side effects, potentially just tired. I also don't expect the harvesting process to have any concerns to my day to day health.

So then...? There are two options: immediate transplant or maintenance chemo and monitoring. The first option will be much more involved and is a more permanent step in trying to reach a more long-term remission. Let me be clear here, there is no cure for my disease, not yet. By doing the transplant I'm killing all the existing cells and then replacing them with what I have harvested. I intend to harvest enough to handle 3-5 transplants if needed. With the transplant they expect I could last a year or so without any chemo, drugs, etc. before the disease resurfaces. This could be longer, it could be shorter, bottom line, it's not permanent. The second option involves me taking the Revlimid 21 days on, 7 days off, for the foreseeable future until some level of toxicity becomes present or it just stops working and the disease resurfaces.

With my reaction to the drugs thus far, option 2 is where we are headed. I've had a great reaction to the drugs and hopefully will be able to keep that up and buy myself a year or so and in the meantime some Doc at DFCI or SVCCC will come up with a cure. At whatever time the drug resurfaces we can then schedule the physical transplant. Till then, I need to call CVS in Lenexa, KS and speak to a pharmacist each month and then call Celgene's 'RevAssist" automated phone survey to confirm, if I am having sex with a woman who still has her womb, that I'm using protection. I also have to confirm I'm not chewing the capsules and, on a serious note, that I'm keeping them away from the kids. One day I'll record the Celgene number and post it as it's quite funny to hear an automated fon voice talk to you about how you're having sex! Apparently I'll still need to have the Dex, but I may be able to take this orally as the Rev is oral as well. So I'll still be on the steroids, reduced amount hopefully, but it's not been that big of an issue thus far. I'll just be happy not having to deal with the twice weekly iv's and mess that goes with it. I will have to go in each month for monitoring.

As an aside, if I were to let this go and just not take anything, they expect the disease would return within months if not weeks.

So I hope that fills everyone in. It's good news, this month will suck with a bunch going on but I'm really pleased with how everything is going and looking forward to getting back to a basic routine and not having to get over to the hospital so often. Everything I've mentioned above is out-patient work so it's easier and less explaining I have to do to the kids!

Stay tuned for more as the saga progresses!

No comments: