Update on Ben (Page 3 of 4)

So - here I am again - almost 5 weeks since my last post!  Although after getting back here the first post I read was regarding Suzanne - it's such a shame but also one of the reasons right now it's difficult to get here too much.

Anyway, I don't really have too much to report at this point. As of now - Ben has been through two cycles of his 8 cycle Gem/Cis protocol.  It's definitely a much tougher go this time then it was last year - he did end up having some nausea after the second treatment of his first round (but really hasn't been bad and hasn't had much since).

His biggest challenge is fatigue and ongoing high ammonia levels and some stomach pain.  His fatigue level with this round - almost picked up where he left off at round 8 last April.  He sleeps a lot - even almost a week later.  When he is up - he does seem pretty good.  He still tries to work out in the yard, planting flowers, tomatoes (for me) - oh and sorry about that my northern friends. 

I have written before about high ammonia levels, the doctor prescribed lactulose - while it helps, it upsets his stomach and he doesn't like to take it.  The oncologist sent him to his GI doctor on Thursday and the doctor prescribed Xifaxan (550mg twice daily) to help stop the bacteria that causes the high ammonia levels.  I see it has helped others on the board.  The stomach pain is a nagging concern (while it's not bad) it's still a potential area of growth given his surgery in October and the pains that sent him to the hospital in December (which is being managed with Fentanyl patchs - 25mcg).

So - all in all, somewhat of a status quo.  We have had some friends and relatives visiting which has been nice, although he sleeps quite a bit - hes still very interactive when he's up.  So for the most part living a "normal" life with lots of naps and stomach pain.  Certainly much better then some others fare on the board.

That's all for now - I'll be back when I can and as always email me if you have any questions.

tom

Wow - another 5 weeks has passed since I've posted here.  Time flies when you are having....well, time flies. 

So - just a quick recap:  my partner Ben was diagnosed with Stage IV, CC on August 30, 2010.  Prognosis - 6-18 months and it's now officially 19 months - woohoo!

Ben did chemo from November 2010 through April 2011.  Scans showed up to 50% reductions at the end.  We spent last summer updating our house and living normal lives.

CC reared it's ugly head again in October (trip to Denmark cut short) and it was growing around the end of the stomach - so the Doctors did surgery to reroute.  In December it was growing a bit more and was irritating the pancreas, no surgery this time - just 25mcg Fentanyl patch to manage pain.  (more detail on all of the above in prior posts).

Ben has been in Chemo since January and is currently through 3.5 cycles of the normal 8 cycle GEM/CIS protocol (which worked last year).  Fatigue was definitely worse this time, but overall not too many side effects - although he was losing focus and sometimes confused (high ammonia levels and onslaught of "chemo brain").

After completion of the 3rd cycle - the doctor ordered a new CT scan.  The "good" news was that the CC seemed stable, no new growths were detected but there was some "thickening along the stomach wall".  The Oncologist ordered an endoscopy to make sure there wasn't anything new going on (so he skipped a week of chemo).  The GI doctor said everything looked the same as Ocotober so chemo was restarted.

Meanwhile we decided to go back to MD Anderson for second opinions on scans and possible future protocols if the GEM/CIS stops working.  (We have had some inconsistencies in local radiologists readings of scans, and while nothing would have changed the protocols we want a second opinion).  Our appointment with MD Anderson is this Saturday the 24th and meeting with the doctor on the 26th.  Not expecting anything major, but it's always good to have a second opinion.

So - that's where things stand right now.  Overall, chemo is progressing well.  The oncologist has recommended that Ben not drive given his inconsistent mental state (most of the time he is fine - but he is a little clumsy and confused at some points).  The not driving is probably the biggest bummer for Ben since it limits him.  I think he will still drive around though for short trips when he feels he is clear (not sure what others have experienced around this).

Will report back after we hear from MD Anderson, luckily there hasn't been too much that's changed (although stable scans is always good to hear) since my last post.  All my best to everyone!

tom

Hi Tom and Ben,

I remember when your trip was cut short. I think that was when I first found this site. It seems like a lifetime ago! I am glad to hear that Ben is still doing great. I wish you all the best at your MDA visit. Much love to you both.

-Pam

Dear Tom & Ben, I would say that is a very good report! Yes, yes! You will just love Marion! Wish I could join you but I don't like coffee!!!  LOL Have fun and let Ben know I am wishing the best for him!

Hi Tom,

Thanks for the update on how Ben is doing, it sounds good to me. And that is great that you get to meet up with Marion today, lucky you!! I know that you both will have a great time too!

Best wishes to you and Ben,

Gavin

Marion - you are too kind.  I agree I could have talked for hours.  I know our paths will cross again (possibly in Sonoma County)!

Someone pinch me, smack me and slap me around.  Has it really been March since I have given an update on Ben?  I'm a little ashamed and embarrassed but if I know this board I hope to be forgiven.

I am fairly certain I could write a book about what has happened since my last update, but for those of you who don't have time to read - here are the cliff notes of the journey regarding my partner:

1)  Diagnosed on 8/30/2010 with Stage IV intrahapetic CC at Mayo Clinic
2)  Finished complete cycle of GEM/CIS protocol on 4/1/2011 - 25-40% shrinkage of primary tumor (depending on who you ask - but obviously good).
3)  Surgery in October 2011 as CC grew back and blocked stomach.
4)  Restarted GEM/CIS in January of 2012 and finished on June 28th 2012 (a long 8 cycles - and he handled most of it very well again)!
5)  Visit to MD Anderson (who we now consult with) in July 2012 - Primary Tumor continues to shrink a bit and nothing else detected - yahoo!!! (you would think)
6)  Tom and Ben embark on 3 week vacation through Denmark, Fjords of Norway - cruise, and Italy.  (if any of you visit fort lauderdale and want to share a bottle of wine I will share with you the joy, sorrow, angst and tears of this trip).
7) Current - as of 9/19/12 - MD Anderson recommends Tarceva as a maintenance regimen (back in July) between GEM/CIS regimens.  Insurance won't approve so Tom is fighting appeals and now trying with the manufacturer itself.

I know I don't have to tell any of you that there is a mountain of details and stress between 1 and 7 (including a couple of other hospital stays and ER visits).  However,  that being said -given the challenges others have faced with this cancer, Ben's physical experience and current physical state has certainly been above anything we were expecting.

As of this writing everything continues to be stable, as I stated - I am trying to get approval for Tarceva - and if that doesn't happen I am fairly certain Ben will go back on GEM/CIS (which we know will happen someday - but while he tolerates it well, it's still physically demanding). 

The biggest challenge Ben faces right now is high ammonia levels in his liver which I have written about before.  I know not everyone experiences that - but he has battled that off and on.  The side effect of this is that he sleeps A LOT, and sometimes he loses his train of thought - I equate to sometimes feeling like he has a mild case of Alzcheimers.  Given his current state - the doctor has asked him not to drive - which of course makes everything a bit more chaotic for both of us (and makes it more depressing for Ben).

It's an interesting dilemma - Ben has now survived over 2 years since being diagnosed - come through two rounds of very strong chemo, and if you would look at him would have no idea he was sick......sounds like this should be in the GOOD NEWS section, but all of the doctors, chemo, chemo brain, takes it's toll and it's been a long difficult road (even though somewhat easier when compared to others).

So - that's my update.  The last few months at work for me have been some of the busiest of my career, that's my lame excuse for not posting here more often - but I do browse around once in a while.

I wish the best for everyone here - despite my lack of posts, incredibly I still think about this board every single day.  Hopefully I will get here more often so I don't have to write such long posts!!!

All my best,

Tom

WELL, YOUNG MAN, CONSIDER YOURSELF BEATEN WITH A WET NOODLE! LOL
It is so good to see you and to get an update on Ben. It sounds to me like he is doing pretty good. Like, you say between this date and that date so much more happens and thing is we do read between the lines. It is an extremely difficult journey to say the least. I still think of you as a dynamic duo so keep up the fight as you are both doing a great job.

Tom, wonderful news that Ben is doing well. Congrats !
Lisa

Hi Tom,

Great to see you here again! And seeing as you ask....take a pinch, a smack and a slap from me! Well, you did ask for it!! Ha!

Thanks very much for letting us know how Ben is doing. It sounds like he is doing well and I hope that you win with the insurance company. Having to fight the insurance company, grrrrr.....

You guys sure have been through so much up till now, a long road indeed. But I know that you'll both keep on fighting and loads of positive thoughts are coming your way from over here. Stay strong!

My best to you and Ben,

Gavin

HAHA  Tom it could have been worse if I had said a noodle with red sauce on it, you would never have gotten your clothes clean!!!  Have fun you 2!!