Thursday, January 8, 2009

A visit to Dr. SH...

So I went back to the first doctor, where this all started in mid November, to bring him up to date on my thinking and to try to do something about this rib pain.

He concurred that I need to start treatment soon. I asked him if it could wait until March 2...he thought it probably could but he wasn't certain.  I explained that I had a number of doctors left to see; he thought I didn't need to see SJ in late February but encouraged me to see BB and talk with KA (which I am doing Monday).

I told him I was leaning towards BB's protocol and I discussed my rationale, which he agreed with (more or less).  He did express concern about the amount and different kinds of chemo in BB's protocol, which he said was very nasty stuff.  In particular, the "C" and "E" of the PACE regimen (cytoxan (sp) and etoposide (sp)) are associated with late-term acute leukemia.  In other words, I could survive myeloma only to find myself with leukemia in 15 years time.  And that's not something that has a very good prognosis at all.  So this is something I will ask BB about.

SH also said he wasn't a believer in maintenance therapy -- the continuation of drugs after completion of primary therapy (the transplants).  Velcade, he said, is a very tough drug.  He noted that SF at City of Hope does believe in maintenance therapy...and certainly long term maintenance therapy is a key part of BB's protocol.  So I'll have to figure this out.

SH did say that he would support any decision I wanted to make, and would administer whatever induction, consolidation or maintenance therapy I decided upon.  Although he did think doing the induction in-patient for the first week or so was a good idea since there was a lot of chemo ("poison" as he put it) in VTD-PACE.

I asked about other side effects.  He guaranteed that I would have neuropathy -- numbness in fingers and toes.  In many cases he said it is controllable.  It will likely go away but it can take years as nerves take a long time to heal.  So that's not great.

On the other hand, he said any loss of taste would be temporary -- probably not lasting more than a year and perhaps less than that.  

I have lytic bone lesions on my ribs, and they could lead to fractures if I am not very careful.  I have been prescribed Vicodin for pain -- the only other thing to do would be to start on Dexamethasone, but I want to come into BB's therapy free from any of those drugs prior to starting treatment.  Then the MM cells won't know what hit them. SH did not think I had to worry about spinal compression now or any time in the next seven weeks, so that much is good.  I need to be careful not to lift anything -- not even the kids -- and to report any new symptoms, fevers, chills, worsening pain, etc.

Had a good conversation with the HR people at Disney today -- I'm hopeful that by working here and there through my treatment when I'm not too fatigued, I will be covered throughout my treatment.  I put together a detailed calendar and I think I will be out of the office until December (best case) or January (worst case).

Aaarghh....I just sneezed and my ribs hurt like hell now...

1 comment:

  1. Few words abt my neuropathy experience related to velcade - after the 1st chemo cycle (which i did not finish-missed the last velcade shot, since I ended up in a hospital with a fever of 39.5C) i felt a lil bit of pinching in the calves, under my feet and some weird muscle movements in one of my palms. But so far, and I'm one velcade shot away from completing cycle 2, that has been it. No more neuropathy experience, thank heavens.

    Taste changed within the 1st cycle-water tasted as if i was licking a piece of metal-horrible feeling, especially when ur ordered to drink least 3 litres of liquids per day and water is always easiest to get and somehow i always think abt it in the first place when i need to drink. Also orange juice was horrible-as if it just gone bad staying open for too long in a warm place. Few other things changed the taste as well, but nothing really major worth mentioning...

    Yes, sneezing is my big issue as well. Every single attempt ends up with a scream.... But i hope it will get better too:) the key is to stay positive I guess...