Update on Ben (Page 4 of 4)

Tom me Ben,
Wonderful news.....makes me so happy for both of you....I'm Italian so I can't waste a noodle for not updating.........we love our pasta.
Hugs, Lisa

Your noodle and sauce threats ain't worked so far Lainy...... time to perhaps try a massive turkey leg me thinks! After all, that is bigger and it is Christmas after all!

Gavin, since it is almost Christmas, forget the turkey leg, I will have to pull out the BIG guns and do a Teddy Christmas.....Calamari Marinara and Octopus salad, clams and oysters!!! One of his Granddaughters who is 24 just asked me for his recipes.

Another 3 months has flown by and here I am.  Interesting news with this post.

Recap - my partner Ben was diagnosed with Stage IV CC in August 2010....a long journey (not surprising), but he's still hanging in there (I have a lot of history if you search on my name for those interested in details).  Ben started his 3rd round of the standard protocol of Gemcitibine and Cisplatin in October.  Even now as I type this nobody would look at Ben and think he was sick.  While he is tired a lot, he still seems to be managing on a day to day basis. 

After visiting MD Anderson in December, they recommended dropping the Cisplatin and focusing on GEM (which they called the "workhorse") to help with quality of life.  The combination was really wearing Ben out - and with the Cisplatin it would mean seven hours of Chemo and fluids, fluids for two days afterwards along with shots to increase his white blood counts.  So just doing GEM would free him up a bit more and not be so debilitating.

Shortly after Christmas Ben started feeling pain in his shoulder and arm - he thought he had pulled a muscle, etc.  Fast forward after more tests, chiropractor (Ben's idea - clearly not the oncologist's, ;-) bone scans, spinal biopsy and another trip to MD Anderson. 

Of course my first thought was "mets to the spine" which I know can happen.  The biopsy seemed to indicate something but not Cholangio.

So - off to MD Anderson last week, (and now this week).  Long story short - it turns out Ben also has Lymphoma!  Wow - two cancers for the price of one! 

Unfortunately I couldn't make the trip this week - but Ben's brother met him in Houston and  I was able to Facetime (video conference) during the doctors visits - which was awesome.  T

The Lymphoma doctor (Luis Fayad - amazing) was quite amazed.  He said "you know - most people don't live so long with CC, so maybe you have had both cancers all along - and what they were seeing outside your liver was lymphoma and not CC".  Huh.

Anyway - not conclusive; they are doing more tests this week to determine the exact type of Lymphoma - they believe it's agressive, but the doctor said he thinks they can treat it.  Lymphoma has a high success rate - and our CC Oncologist at MD said he is one of the best in the business.  He said "when I'm done with you, you will need to figure out how to deal with your CC, but hopefully it's contained to your liver". 

So - there you have it - a whole quarter boiled down to a few rambling paragraphs.  Not too much to report up until today. (besides the usual cancer drama - but that's not very exciting anymore).

More to come - I'll be back soon with an update to see how it turns out.  We meet with the doctor again on Thursday (me via Facetime).  All my best to all of you.

tom

Hi Tom and Ben,

Wow, another 3 months!! I'm sorry to hear about the lymphoma, but hopefully it will be manageable. How unfair for poor Ben. I always look forward to your posts and hold my breath every time I go to read them. Not the best news this time, but hopefully cureable. My prayers to both of you and please keep us updated.

Love,
-Pam

Hello everyone, I thought I better not go another three months before an update - thus incurring the wrath of the wet noodle from Lainy.  I guess 6 weeks isn't so bad (for me).

Actually there isn't too much to report (luckily).  As I said in my last post - Ben was diagnosed with a very agressive form of Lymphoma - so the chemo treatment has now changed to address that (he has a curable form; "type B").  The standard protocol is six cycles (one day of chemo, the next week a "lumbar puncture" of chemo in his spine, then week three off).  Ben has completed two full cycles of the chemo - and this is the start of cycle 3.

Ben continues to tolerate chemotherapy pretty well - he rarely gets nausea or sick...just really tired.  At this point we are still hoping that the CC cancer is just sitting there bored.....our fear is that it will start growing again since his current chemo regimen isn't known to fight CC - so it's kind of a "wait and see" game, but so far it's not showing any signs.

Unfortunately, our dog of 15 years (our beloved dalmation named Zack) died this week - definitely a mental setback for both of us....he has been Ben's companion through this journey day in and day out - and since Ben is home alone so much I'm a little worried how it will effect him - so will try to keep him occupied with our friends.

Anyway - just wanted to check in - as I said, nothing too dramatic to discuss which of course on this board is GOOD NEWS! 

Take care everyone.