Monday, January 12, 2009

Consult with Dr. KA, and some pleasant surprises...

Well, not in that order, exactly.

Pleasant Surprise #1: I got my Vicodin prescription (750mg pills), but rather than take one of those, I took one 500mg pill that Jill had left over from her bout with Meningitis last summer (waste not want not when it comes to narcotics!). I work up the next morning, long after the Vicodin would have worn off, and my pain was remarkably better. I still felt it if I exerted myself, but I was able to manage without even any Advil, much less 750mg of Vicodin. Since last Thursday, I've felt a little pain in my back (though today it feels fine) and intermittent rib pain when I exert myself, but it's nowhere NEAR the degree of discomfort that I had last week. I'm doing my best not to lift anything (tough, as both the kids want me to play with them) and golf (even running) is out of the question, but otherwise I can get around more or less.

Since I was feeling better, I went to Las Vegas this last weekend for my annual trip with a bunch of former Disney executives. This was a calculated buddies and I have a saying: "go to Vegas healthy, come back sick...go to Vegas sick, come back dead." Obviously my immune system isn't firing on all cylinders, but I also took it a little easier than usual and I feel fine.

This is always a good time and this trip proved no different. On the long list of people that deserve Cancer more than me, let me add Jake Delhomme, the QB for the Tennessee Titans. That terrible performance cost me a couple of hundred bucks!!!! (please note: I would NEVER wish cancer on anybody -- even Jake -- so please understand I'm's just that I haven't cracked a joke on this blog in quite some time).

Pleasant Surprise #2: I awoke this morning to an email from BK, a very prominent executive in the videogame business that I've known for some time and who earlier on called the director of the City of Hope, whom he knows well, on my behalf. BK has been fantastic and I owe him my thanks. His email this morning introduced me to a friend of his, CN, who he told me to call.

CN is an executive in Detroit (not car associated) whose wife, I learned, contracted MM 13 years ago. I spoke with him for about 40 minutes and he was immensely helpful. He approached the disease in the exact way I did. He researched everything he could, spoke with all the top doctors, joined the board of the IMF (the International Myeloma Foundation, which is the other group, along with Kathy Giusti's MMRF, that works to cure this disease), goes to hematology conferences, etc. When we were speaking, I anticipated what his comments and questions would be, and he anticipated mine -- it was two like minds talking about a problem they were both tackling and it helped a lot.

He knows every one of the top doctors and as he went through the list I was almost laughing because they are precisely the ones I have spoken with. He explained the biases / philosophies of each doctor and they are consistent with what I've observed. He told me he was surprised I was able to speak with KA at all, much less have KA take a deep interest in my case, which was great since I was to speak with KA shortly.

Perhaps most importantly, he told me his wife went through Total Therapy 1 with BB and has been in complete remission for eight years. He thinks BB is a very quirky guy (a 65 year old who rides a motorcycle to the office and does rounds in black leather pants), but an excellent doctor. I have no problem with quirky so long as I'm cured. He said that long-term leukemia isn't an issue with BB's agents because the real issue for leukemia is prolonged use of these chemicals. BB's protocol involves no more than 12 days of these drugs (and possibly as few as 4), as opposed to a regiment that could have them on them for weeks or even months. He mentioned BB has gotten very good at assessing which agents need to be used.

I then spoke with Dr. KA for about an hour. KA is a terrific doctor and was great to speak with. The highlights:

* He concurs with the diagnosis. He is heartened by the fact that my Beta 2 Microglobulin is not high, my C Reactive Protein is normal, there is no bone disease, there is no renal failure, etc. He said I have hyperdiploid myeloma which has a better outcome than most myeloma. The absence of negative chromosomal factors like Chromosome 13 deletion, 4;14 translocation, etc. are all positives as well. Nonetheless, I still have MM, and it is progressing rapidly enough where treatment needs to happen soon.

* The fact that I have a second unrelated clone (meaning two separate cells went haywire and started duplicating) is "not as uncommon as people probably happens in 30 percent of cases."

* His recommended treatment is induction with novel agents (Velcade, Revlimid, Dex) followed by high dose melphalan and autologous transplant.

* He is in favor of maintenance therapy (specifically Revlimid)

* He thinks the VRD regimen is so effective that, when combined with my generally favorable prognostic factors, that "there is a 99% chance you will be in complete remission after induction therapy." I like those odds -- I'm 100% certain of that much myself, actually.

* He thinks the TT3 protocol that BB uses (and he has known BB for 30 years, and also SF for 30 years which is great) "would not be crazy to pursue" although it's not something that Dana Farber would "ever do." The reason being that the new drugs are so effective it might be possible to achieve the same results from less drugs, or from a single transplant rather than a double transplant. [Unfortunately, in my opinion, the same logic that says "you're in remission after one transplant, you don't need another" would also say "you're in remission after induction, you don't need a transplant." BB's protocol really is everything and the kitchen sink. The issue seems to be that one might be able to be cured just by using the faucets without whacking you over the head with a large enamel basin]

* On the topic of kitchen sink, I asked about the chance for long-term leukemia in BB's protocol. He had heard of it but thought the odds were low (I failed to ask how low), but he seemed to think that there could be secondary marrow problems that might result in low blood counts that might make it difficult for me to be put into trials for new drugs that are coming out.

* New drugs coming out include something called heat shock proteins (harvested from sea creatures at the ocean floor, evidently) and HDAC inhibitors. He thought a combination of HDAC inhibitors and heat shock proteins with VRD might very well be a cocktail that could achieve remission for a "very, very long time." He noted that the quoted median survival of 3-4 years which has recently increased to 7-8 years does NOT include the benefit of Relvlimid or Velcade, so I could be looking already at 10+ years of median survival without even getting the transplant. Take THAT, Dr. ML!!!! (he was the "don't plan on living to Parker's wedding" guy).

* The same French doctors that did a study proving that early transplant after induction is better than late transplant are now repeating that trial with VRD. Two arms of the study will go on VRD and have their stem cells harvested, one group will get the transplant immediately, and one will wait until recurrence. They can then see if early transplant still makes a difference. It would be very interesting to see the results of this -- but they won't be useful for another 8 years or so.

* He thinks that Lipitor did not cause the cancer, but he does note that Myeloma can confuse cholesterol readings. It may be possible that when my cholesterol went from its fairly predictable 220-230 about three years ago up to almost 300, this was the MM starting up. I'm going to check with PZ to see what, if anything, the protein levels were back then. He had mentioned that there hadn't been high protein in my bloodwork before but it's possible he didn't run all the same labs. In any case, when I go in for high-dose chemo, I will have to be off all meds including Lipitor (which irritates the liver). And no wine. I want my liver as strong as possible to deal with the high-dose chemo. So once I start treatment, two glasses a week is it for me. : (

* He thinks there should NOT being any long-term peripheral neuropathy as long as I am not on Thalidomide. So one big question for BB is why use Thalidomide if Revlimid is more efficacious and not likely to cause neuropathy? Velcade still will, but it is dose and schedule dependent and there are things that can be done to modulate those. "We've gotten very good at that," he says. The other big question for BB is the likelihood of leukemia and secondary marrow problems. KA says BB will tell me it's not a problem at all, "but I am whispering that it might be." I wish there was less uncertainty about these things! The last thing I want to do is get into remission for 7 years with BB, have it recur, and then have mangled my marrow such that I can't tolerate or benefit from HDAC inhibitors, Carfilzomib (next-gen Velcade), etc.

* He said there was no real difference between in-patient vs. out-patient. He said that "old timers" like him and Dana Farber would be inclined for in-patient. I think more and more that this depends on the quality of the hospital -- I want to make sure it's new, and clean, and has a good means of confining germs. And that the rooms aren't someplace that I'll be miserable while I'm there, of course (beyond the inevitable misery of the disease and treatment itself).

* He thought I shouldn't wait very long for treatment, so I'm reluctantly moving up the start date from March 2 to February 16th, I think. He said the marrow involvement is significant and the report says that cells have formed in "sheets" and "clusters" and that makes him concerned. They are dividing rapidly. Stupid little buggers -- I'm gonna poison them good!!

So that was that conversation.

In other news, my brothers are being blood typed for an allogeneic transplant down the line (KA told me Kathy Giusti had one of these, but from an identical twin which is rare and which obviously makes it easier to tolerate). That's good news because it means Kathy may be cured and I want her healthy and around for a long time to help lead the fight against this disease.

I've worked things out with Disney where I *THINK* I will be able to be covered throughout my illness, provided I can work a bit from home now and then, which I should be able to do. So that takes care of the insurance concern. Afterwards, I will need to be disease free for five years before I'll be eligible for long-term let's hope this is the only kind of cancer I ever get! :)

I also learned that even if a place (like SH's shop) is not in my healthcare network, they will still pay 100% of costs, it's just a higher "deductible" on that. For in-network places, after the first $2500 of co-payments, 100% is paid. For out-of-network places, it takes $5000 before 100% is paid. Sadly, this is gonna cost me a lot more than $5000 so it doesn't really matter. We're looking at a $2500 penalty (and even that should be tax-deductible) for using SH versus an in-network provider...I can live with that.

Elsewhere on the expense front, I really think I want 24-hour private nursing while I am in-patient and neutropenic (meaning no immune system). That won't be cheap, but I want somebody making sure all my medications are being given, that doctors are consulting each other to watch for side effects and to make sure the right anti-nausea and other meds are being given, to make sure people wash their hands before they come in and out of the room (if I'm asleep, I can't be telling people to do this), etc. With luck, I'll only need this for maybe 20 days or so over the course of treatment. That's going to be a LOT of money, but if I can cure this, it will be worth it.

Okay...that's a big, big update for one day. I'll post more as I know it. The next consult I have will be on Jan 21st with BD. I'm trying to reschedule SJ earlier since Feb 23rd is probably too late (KA thought it might be pushing it to wait 6 weeks...we'll see what BD has to say). We'll also have more on the progression of the disease at the end of the month after I spend a week in Little Rock with BB and his people. KA thinks BB will say I need immediately treatment as well. So putting it off for another full month might be too much.

Feb 16 looks like the first really ugly day for me. But I'm ready. I will overcome this thing.

Cancer picked the wrong guy to mess with!


  1. Hi Nick,
    Amy Snelling let me know about your blog -- now I'm a follower! Cancer did pick the wrong guy -- your positivity and tenacity will get you through this and have it beaten. If you're having a down day and need a laugh -- remember a moment from Jeff & Nicole's wedding -- when I did a spit take while laughing at one of your jokes. You were soaked. I'm a classy lady.
    We're thinking about you and pulling for you in Beantown.
    Take good care and love to you, Jill and the kids,
    Lisa MacGillivray

  2. Thanks, Lisa. Yes, that was one of the truly funniest moments of my life thus far. I remember it like it was yesterday!

    I appreciate your thoughts and concern. You are the classiest of ladies! :)

  3. Nick,
    Thanks for sharing this. Very helpful information here. I never met KA but I
    LIKE HIM ALREADY!!! Lotsa positive news.

  4. This really does sound more positive. I am hopeful things work out with the BB treatment--esp. glad there doesn't seem to be so high a risk for leukemia after the chemo. We are still pulling for you and you family!