Second Opinion, Decision

Monday we met with Dr Jacob Laubach at The Dana Farber Cancer Institute (DFCI).  It was a big deal to get our records from Beth Israel Deaconess Medical Center (BIDMC) to DRCI, as the two hospitals have incompatible computer systems.  But we got all the records and even filled out an 11 page form listing all sorts of details in my medical background.  But the doctor reviewed what was available to him over the weekend, which did not include the CD of images I got on Friday from BIDMC, so we had the feeling that some of the recommendations were based on incomplete information.  Just the cost of spanning different medical institutions.

Dr Laubach was very hopeful.  Had I gotten MM 30 years ago, it would have been 2 years & out.  20 years ago it was up to 3 years.  Now it is expected that they can fully suppress MM, and that MM should not be the ultimate cause of my demise.  They cannot cure MM, but they have excellent tools for putting it into remission, checking that it is still there, and beating it back if it comes out of remission.  Dr Laubach examined me and declared that I was healthy other than the MM and the cracking bones.

Dr Laubach recommended a different course of treatment than the one I am on now.  He said the standard for MM care at DFCI is a 3-drug cocktail consisting of Velcade, Dexamethasone, and Revlimid.  I am currently on a 2-drug cocktail consisting of the first 2 drugs.  Actually, the second in the list is a steroid, not a drug per se.  Dr Laubach said he would contact Dr Levine and discuss why Revlimid is not included in my treatment.

Dr Laubach described two clinical trials I could participate in.  One (which is actually being run at BIDMC) is to create a vaccine from your stem cells and the MM cells themselves (somehow).  The second is a 3-part trial at DFCI where they are testing 3 different treatment protocols to see which has the most effective cure rate.  The first group would get the standard stem cell transplant and normal follow-up.  The second group would get the standard stem cell transplant followed by a maintenance dose of Revlimid.  The third group would get the standard stem cell transplant.  Then 3-4 months later they would get a second stem-cell transplant.  In other words, instead of practically killing you just once, they would practically kill you twice.  I cannot claim to be very interested in that option, given that they say the standard protocol has a very high success rate.  And what if MM does come back?  Can’t they do a second stem cell transplant again then?

Overall we were impressed by Dr Laubach and by DFCI.  Cancer is all they do, and they do it in bulk.  Dr Laubach clearly knew his stuff, and he explained the options and the reasons for them very well.  He opened up the possibility of me getting treatment at Emerson, supervised by him.  That would certainly be more convenient logistically, but we have already switched horses from Emerson to BIDMC, and I am somewhat reluctant to switch back.

We stayed Monday evening in Jamaica Plain with Brian and Bridget.  Bridget advised that the key decision is the 2- vs. 3-drug cocktail.  The clinical trials or the logistics are lesser concerns. It was great to talk things over with Bridget, as her medical background makes all this make sense to her, unlike us.  Even if she is not an oncologist, she has the intellectual context to fit the details in, so she can retain them.  We don’t, so things go in one ear and out the other regularly. 

Tuesday I had the 3^rd chemo treatment session.  I ate less for dinner Tuesday night.  I also took some antacids after dinner, as well as the anti-nausea medicine.  There was some digestive unease and a fair amount of burping, but no real nausea.  The real effect was being awake for a good part of Tuesday night.  Now sleeping is something I am pretty good at, so reading until 2AM and then not being able to get to sleep is very unlike me.  I spoke with my sister Teena (who is an ovarian cancer survivor) on Wednesday, and she said that is the effect of the steroid.  You are simply wired.  At least I have not had more severe effects from the steroid, which can include manic mood swings, even to violence.

Today we had the 4^th and final treatment in the first cycle.  We met with Katie Conway, a nurse practitioner who works with Dr Levine first.  She answered a few questions and deferred some to Dr Levine. Dr Levine then discussed his conference with Dr Laubach, and outlined our options.  Specifically, he discussed the 2-drug vs. 3-drug cocktail. 

The 2-drug cocktail was a very deliberate decision.  I have had 2 pulmonary emboli, and I was on Coumadin for 7 years.  I got off Coumadin recently because we found an internet article describing a study in 2007 that found a correlation between males on Coumadin more than a year and a 63% increase in bone fractures.  So, when I saw Dr Levine, I was not on any anti-coagulation regime.  Dr Levine was very worried about blood clotting, as I now have several factors that cause increased clotting.  First MM itself can cause additional clotting.  Second, bone fractures can increase clotting.  Finally, Revlimid results in a 20% increase in the likelihood of clotting.  Since we were eager to get started on treatment, Dr Levine chose to refrain from using Revlimid until I could get my INR reading up into the 2-3 range.  After all, even if the probability of a blood clot is low, the risk associated is high.  I have survived 2 pulmonary emboli, but the third could be fatal.  This restored our confidence in Dr Levine, and reminded us that this is all largely Greek to us.  We both remembered that Dr Levine had been concerned about another embolism, but we had not put that together with the choice of the 2-drug cocktail.

He also said that BIDMC and DFCI are actually both under the umbrella of Harvard Medical School, so they have the same protocols available to them.  Yes, DFCI handles more cases, but BIDMC certainly handles enough to have a very reliable practice.  The option of having the routine treatments administered at Emerson and direction of the treatment come from BIDMC is not available.  We have to choose one horse to cross this stream.  At the end of the day, Dr Levine answered all our questions satisfactorily, and we choose to continue with treatments at BIDMC.

Revlimid will be part of my treatment next cycle, assuming I am fully anti-coagulated.  To that end I am upping my dose of Coumadin to get my INR over 2.  Revlimid turns out to carry its own set of issues.  A monthly dose of 28 pills costs $12,000 at the pharmacy!  Buying directly from the insurance company the price declines to $10,000!  Since we never took drugs of any scale, we got the cheapest drug plan on the market.  The co-pay for revlimid is 35%.  Apparently there is an appeal process that can get the co-pay down to 20%.  Still pretty hefty.  Plus it is in the family of thalidomide drugs.  So it is a very tightly controlled substance.  I had to sign a pledge not to get anybody pregnant (easy, I’ve had a vasectomy), not to have unprotected sex with anyone who is fertile (who would have me?  I won’t be taking the drug for another 2 weeks, so ladies, there is an opportunity), not to share the pills with anybody, and not let a fertile female even touch the pills without rubber gloves on.  So I signed the form, which will let us open negotiations with the drug company to determine how much this is going to cost us.  Barbie has long been concerned about how much this illness was going to cost us, and here the beauty of our health care system has raised its ugly head.  Once again, when I told her ‘Don’t worry about it’, I was dead wrong.

Next week is the 3^rd week of the first cycle, so there are no treatments.  No overnight trips into Boston.  Nuts!  So we will be forced to go up to our place on Lake Winnipesaukee and rest and recover.