Tuesday, July 2, 2013

Four Options And No Decision

So I met with Dr J today and reviewed a large amount of information.  At the end of the day I am pleased with what I consider to be my option of choice but am also concerned with how that may impact things overall.  I also had the chance to go by and see Steve who is on day 14 post SCT and may be getting out this weekend.  Here's a picture with me being very uncomfortable in the mask and gloves - i'm used to being on the other side!


On to the results.  In an earlier post I mentioned the comments in my recent results that caused me concern: faint m-spike that can't be quantified and IgG Kappa immunofixation.  I spoke to Dr J and he basically said that the results he's seeing there is what he's confirmed on the results he saw today - I am in a COMPLETE REMISSION.  I may have a faint trace of IgG Kappa as my IgA is sooooo low!  I'm actually negative IgA (below normal).  This is the beauty and the curse!

First, results - all my numbers came back good - actually, I can't say that - I was so focused on the other numbers that I never even paid attention to the basics!  Bottom line, they didn't say there was a problem so I'll go with all is ok.  My IgA came back 59 with "low" being 70.  My number from DFCI was 73 so I am definitely on the low side of everything.  That's the beauty, now the curse.

I'm not sure of the best way to explain all this so I'm reaching out to my inner "man of steel" and flipping back and forth and back and forth and hoping that you can keep up, but like the director of MOS, I don't give a damn! (it wasn't that bad a movie!)  There are four options here:

1) DFCI recommended 2-3 rounds of consolidation (RVD, 14 days on, 7 days of).  Follow that with a Rev/Velcade for the foreseeable future.

2) tandem transplant - do another one - back to back.

3) allo transplant - do another transplant - this time with someone else's stuff.

4) do nothing - that's right - nothing.

So what does this mean?

a) If you are newly diagnosed, you are given four rounds of RVD, cytoxan, harvest, transplant, consolidation and then maintenance (rev/velcade).  There are very many tests to verify the efficacy of this process.  Personally, I am not 'newly diagnosed'.

b) WTF - are you f'ing kidding me - go through that again, now?

c) ok - just as bad as the first time but with graft/host disease thrown in?  I'm NOT a fan!

d) ok - I can't complain about this one!

And to really make things confusing...

i) this is pretty much what everyone would do unless your disease is very aggressive.  You could quote a number of studies that provide proof of the benefits to this process and maintenance.

ii) this is still a standard process in some locations.  You could quote a study in Germany vs Holland (no, not a football match) where it was proven that the Germans that had tandem transplants fared better than the dutch with only single transplants.  This is a study you could quote.

iii) An allo transplant is a complete reboot - replace all the junk in your system with brand new, non MM junk!  As much as this sucks it's a true reboot of the system and offers a long term solution.  But with a massive amount of risk.  However, this is a study you could quote the success rate.

iv) this is where it gets tough to explain - you're not doing anything - so you're not fighting anything - so you're not putting your body at risk for anything.  There isn't any study to quote - the disease is going to come back.  What do you do?

Do you comprehend the beast to my beauty?  It gets tougher - DFCI is 'clinical' in nature - you have to do it the same way or you don't get the results we've documented.  I want to maintain the relationship I have at Mt Sinai and at DFCI.  Having that two doc reference and opinion is a bonus for me - losing that would be a big loss in my opinion.  If I opt for 4/d/iv then I potentially sever the ties with DFCI - I can't see them agreeing to this plan.  That is the true beast here!

Another aspect here - I've taken Revlimid for over three years and most recently it wasn't "working" for me.  With the prednisone (steroid) it started to go down but not for long.  In other words, my body has started to recognize/defeat the Revlimid.  When Revlimid is needed and acts against the cancer in your body there is a specific purpose and expected return.  When you don't have a disease to fight (as I am right now) then what purpose is it serving?  The other issue, and you need to realize the minimal impact but a risk nonetheless, is the 7% chance that Rev will cause another form of cancer (mds/leukemia).  This is only 7% but it is a risk.

The question I asked was if I did nothing for eight months and the disease came back what would I lose by NOT having done the rev/velcade (for example)?  The answer: nothing.  So why run the 7% risk if the benefit doesn't have any purpose.  The answer: who knows!  I can get you quotes as to why maintenance and consolidation works as well as why tandem works as well as why an allo works.  I can't bring that quote for nothing as nobody runs those tests.  But if I run this by the common sense meter, it's 'do nothing' that makes the most sense to me.

Dr J is going to talk w/ the guys at DFCI to explain his thoughts and get their opinions.  I'm hoping I can maintain the relationship there.  Losing that would be of great concern to me - but I need to think about me first.

Right now it's about 11p and I need to go to bed.  I post this with the full knowledge that I have not proofed any of what I've written.  So if it doesn't make sense - it's not necessarily on purpose!

cheers! :)

bill

5 comments:

christina neumann said...

Hi Bill,
After my transplant, I opted for no drugs. Had 4 wonderful years. Who knows how long you will have but being off everything was worth it,IMO.
Chris

Lorna A said...

Here in the UK you only get maintenance if you are on a clinical trial. So most people are like Mike, crossed fingers and a bucket load of hope.

rugbyhubby said...

That's a shame but I hear they are pushing that along, at least in some aspects.

rugbyhubby said...

Chris / thank you for reading and your comment! I'd love to be four years with nothing!

Susan Hayes said...

Bill I completely understand your complexity. I have read about the success of back to back transplants as well but you are right to say WTF. Wait for Dr. J to get back to you and in the mean time enjoy your remission.