Saturday, April 11, 2009

We temporarily interrupt this program for...SUSHI!

Ok - so everything's changed - but that's a good thing!

Upon my first visit to St. Vincent's the doctors there evaluated everything that was done prior and developed additional questions that they believed may be relevant. My iron seemed to be low; is there internal bleeding causing the iron deficiency and low red blood cell count; I have additions to my 17p chromosome rather than deletions; etc. They considered me "asymptomatic" (the myeloma, though present, is not causing damage or other problems that would normally be present) and were suggesting that we consider monitoring rather than moving forward with the RVD. This came about AFTER my last post. I discussed with DFCI and they talked with SV and I had another visit Wed, 4/8. The general thought process was I was stable and we shoudl consider NOT going on the RVD regimen at this time - and then my blood work came back with a slight increase in the IgA levels (the protein that is causing all this mess), an increase in my Total Protein count and most importantly a spike, for the first time, in my calcium levels. This is of concern in that if the myeloma is "eating away" at the bone's themselves (one of the symptoms of active myeloma) then the calcium from the bone would be released into the bloodstream. However, there could be other reasons for an increase in calcium levels.

I was instructed to lay off my multi-vitamin, stop the VitD intake (supplemental) and stay away from dairy products and have another blood test on Friday, 4/10. When I arrived for that blood test I was informed I would be having labs (bloodwork) as well as treatment. When I asked "what treatment" I was told chemo - which of course put me in a tailspin - I had gotten no phone call, WTF was going on?!? Bottom line, if my calcium levels were still elevated they were going to put me on Zometa (a bisphosphonate bone strengthener). That was the treatment they were going to perform. Well, this caught me slightly off-guard as I couldn't get that answer until I was in the treatment room. And when they do labs, if you're having treatment they can't take blood from your arm, they need to do it from your hand (which is good as the same lady had left a beautiful blue bruise on my arm from Wed.) It wasn't painful but it was bizarre.

So, rather than typing out everything that occurred, I've just cut/paste the email I sent out to family as it describes my next steps and explains the sushi comment above - thank god I love Japnese food!

I went to St Vincent’s today for a follow up blood test. They were testing specifically for calcium and total protein as my visit on Wed had a spike in both and that was the first time my calcium level had risen (a flag as it could mean that the MM is now starting to infiltrate the bone and the calcium is being generated by the degeneration of the bone). Bottom line, my calcium level dropped back to normal and my protein dropped as well. If the calcium level had not dropped below 10.5 (it was 10.7 compared to 10.0 today) then they would have immediately put me on the Zometa (bisphosphonate, a bone strengthener). Since it dropped to 10 there was no concern.

Dr. Jagannath’s opinion is that I am asymptomatic (not showing any negative effects of the MM). He is suggesting there is no immediate need to begin the RVD regimen (chemo) at this time. They currently have a clinical trial they are implementing, more details on that below. I traded emails with Dr Richardson at DFCI and he’s in agreement with Dr. Jagannath with the caveat that we are on a conservative leash – should any of the numbers start spiking we go immediately on the RVD regimen (which is what Dr Jagannath stated.) Additionally, Dr Richardson asked that I get on the Zometa as a precautionary measure (which Dr Jagannath had also suggested).

The clinical trial they are implementing involves an extract of Sea Cucumber, Sea Sponge, Sea Urchin, Shark’s Fin and a sea plant (all from the Pacific Ocean). Apparently this extract has been around for years but never officially studied. Dr Jagannath has two patients that have been using it (with good results) so they’re implementing an initial protocol with 20 patients to see if the results are such that they justify a full fledged clinical trial (multiple locations, many more patients, placebo’s, etc.) Apparently the extract has been successful in fighting back the MM disease so they’re studying the effects in the same way they’ve studied Green Tea and Vitamin C. Additionally, the protocol will start with another bone marrow biopsy which will just give us another, more detailed look, at where I stand currently (and can compare against the base-line reading done early October.) The study is a year in length and involves my taking (orally) two units of this “Sea Goo” each morning and evening. A unit is about the size of a small jello container (and apparently you slurp this up like jello as well – but I’m guessing this only comes in sushi flavor and not grape or cherry!) I will have tests run each month to monitor the impact of the extract and will need to avoid supplements that may counteract and/or impact the extract (Vit D, Vit C, Green Tea, etc.)

Bottom line, results of everything are good! I still have MM but I’m stable and not being impacted by the disease. The protocol they are implementing will either a) do nothing or b) have good results in that it pushes back the disease from where it is today. The other advantage of the protocol is that I will be monitored from a clinical perspective so my numbers, etc will be watched closely as they are trying to monitor the effects of this extract on my disease. Should, at any point, the numbers start moving in the wrong direction I will be dropped from the protocol and will start on the RVD.

What’s also great about this, if it works, then I’m not having any strange drugs in my system and I won’t be impacted by this pain in the arse disease come August (and the Beach House!) Lorri also weighed in and agrees with the consensus.

So – on to the sushi platter!!! I’m reaching out to St. Vincent’s tomorrow to schedule my first visit to sign the necessary paper work and schedule the initial tests and biopsy. I’ve yet to find out how this impacts my ability to play rugby (guessing that story is still the same) and my ability to consume that fabled mother’s milk (Guinness – also guessing I’m limited to my 1.5 pints/week.)

Sorry for the drawn out email but wanted to get everyone a quick update on where things stand. Let’s hope the power of the Sea Cucumber works well – I may get out of this without becoming bald!

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