The C Word – A New Battle Day 55 - Next???

It is sometimes hard to believe that George even has cancer.  On the outside his healing has been extremely remarkable.  I find it incredulous that it has only been a bit under 8 weeks since surgery.  Yet, on the other hand I find it hard to believe all that HAS taken place in this span of time.  Think of it – nearly three weeks in the hospital.  Followed by coming home with PICC lines, feeding tube and a drain.  Week by week, one at a time, those would be removed.  A day here and there George would feel well.  Nearly always followed by what he calls “not so good days”. 

And then, finally, the last of the tubes is gone and he had a pretty good week.  He is able to make walks around the block pretty well.  Still tired, but not as bad as he was before. He looks as good as he did before he broke his neck.  His appetite is fairly normal.  He just looks pretty good and “normal” all things considered.  Not fully healed on the inside just yet, but the change from where he was just two months ago is pretty phenomenal.  For those on the outside looking in, you would find it hard to believe that on the inside a cancer is residing. 

My own body finally gave out last week.  Thursday afternoon I started not feeling so well.  By nightfall I had a temp over 101.  Fortunately – I had a husband who was feeling well enough to monitor things.  Unfortunately, I made a trip upstairs in the middle of the night to retrieve an extra blanket and bathrobe.  Stopping in the bathroom to relieve myself, I was quite out of breath and not sure which end of me wanted to be first to be relieved – I sat down - - and the next thing I know I was on the floor apparently having passed out.  Not so good.  Felt better though (short lived).  Made my way back downstairs and a short time later let George know what happened.  It took a lot of Tylenol and rest before I was feeling better (a couple of days) – I think I had a touch of the flu.  But, again, at least George as able to tend to me for a day or two. 

Over the past few days we started to do some more normal things… together.  Went to the mall in search of a new wedding band.  Not to replace the one he already has – but one he can wear since his original band is a full size too large for him.  He lost so much weight after the first surgery.  This second surgery did not result in much of a weight loss for him – maybe 5 to 10 pounds in the short term (as opposed to over 40 the first time, plus the 20-30 he lost on his own prior to surgery). 

But today we start phase two of this journey.  What will we do next?  We met with Dr. Sheh to find out what is in his bag of tricks.  Will anything help?  Unfortunately, there is no treatment that conclusively will alter the course of his cancer.  There are some long-shot maybe’s, but even those are pretty low on the treatment scale.

This is what I believe we learned today:

1.     Wait, watch and see.  This was the course we have been on since the last surgery.  What we learned is that there is no definitive, viable way to detect the growth of the tumors.  And we also learned that even though WE think the tumors picked up speed, in the world of cancer it is still labelled “slow growing”.  We are grossly aware that the idea of any future surgery and cyto-reduction is not very appealing in the way of quality of life afterwards.  With so many organs already fully or partially gone, there is little left that can be taken out. 

2.    Folfox chemotherapy.  This is traditionally the chemo that is tried with this type of cancer.  It is not too successful as it is meant to target colon cancer - - and although this cancer might be considered in the broader umbrella of GI/Colorectal cancer, it is not.  It is a stand-alone type of cancer.  In a few, very few cases, it may slow the growth of tumors temporarily.  No guarantee.  We asked how this is administered and found that a port is put under the skin in the upper chest area.  The chemo is administered over a 2 day period, every 2 weeks, for six months.  (From what I could gather, a visit to the clinic to hook up the chemo is required, then go home and return 2 days later to get it unhooked.)  Side effects could include diahrrea (more than we already have to deal with), fatigue during and for a few days after (normal these days already so assume it would be worse), neuropathy in feet and/or hands (not a pleasant feeling from what I hear).   

3.    Dr. Sheh sent George’s pathology out for more extensive genomic testing.  Matter was tested for several hundred possible genomes.  Four were identified in George’s “DNA”.  The acronyms for these are foreign to us:  FBXW7, KRAS, GAS and LZTR1.  None of these have FDA approved therapies in George’s type of cancer.  The latter two do not have any FDA approved therapies in any type of cancer.  The first two do have FDA approved therapies in OTHER types of tumors.  The KRAS targets melanoma and lung tumors(? I think that’s what he said), but Dr. Sheh says those are not showing too much success.  The first one is the only one that MAY apply to George.  There are two pill type chemos used for treatment.  The down side is that the only place doing a clinical trial is at MD Anderson in Houston, Texas.  Should we apply for that trial and be accepted, it would mean travelling to Houston for treatment and going on a monthly basis for monitoring.  With no guarantee that it works.  It is only a Phase I trial which means that it is in an early stage of testing.  We would have to do more investigating about costs, and find out more info on this trail to even determine if this is a viable option to apply for.

Not known yet is anything about whether or not immunotherapy is viable.  While Dr. Sheh sent out samples to that lab, he has not heard anything yet – and he should have received something weeks ago.  He will check into where that sampling stands.  He also suggested we try to see if Dr. George Fischer, the PMP specialist/researcher for Stanford, will see us and will put in a request on our behalf.  This doctor refused to see us the last time for a second opinion so we don’t think he’ll change his mind.  We could also send the results to another specialist and get their written recommendation to see if they suggest anything different. 

We chatted about the three choices put before us today, and it appears the most viable one in the short term is to give the Folfox a try.  It can’t hurt, it may help.  While not a pleasant experience, it is probably better than doing nothing, because doing nothing most assuredly did not work for us these past two years.  We can still investigate all other options and find out if George is a candidate for other treatments. 

We aren’t making a decision today.  George needs another month to more fully heal from the surgery before we can proceed with any type of treatment.  We have a follow up appointment in mid-October to do labs and see if anything else has come to light during the interim, see if we’ve had a chance to get another opinion or find out any other information. 

Clearly, none of these are ideal solutions, none of these has any apparent long term survival rate.  This cancer is vastly underfunded in the way of research because there aren’t “enough” patients to make it worthwhile for investigations into cures. 

In the meantime, we hope to take advantage of a period of time that George is feeling pretty good.  A few weekends away (the ones we didn’t get over the summer), some time with the kids and grandkids, time with friends and family, time to make some special and precious moments. 

But…. Maybe I should put some good padding in our bathrooms???  Or bubble wrap George…. To make sure that nothing else gets broken in the meantime?!?!?! (Sorry honey, don’t want to leave anything to chance!  Haha!)