Update on Ben

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

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

I’m always amazed at how much time flies between my postings, but you are all always in my thoughts.

Ben has definitely made progress on managing his pain – in my last post the pain doctors were still trying to manage the pain – without over-medicating and causing his “confused” state. As always, the veterans here – usually know what’s happening before the doctors do.

It turns out Ben’s ammonia levels were “off the charts” and the doctor prescribed 30cc of Lactulose 3 times a day to produce “loose stools”, which is the only way to reduce ammonia levels (Of course Margaret had already predicted that right after my last post!…thanks Margaret, I told the doctor about you!)!

Once Ben started the Lactulose – within about 3 days he was must clearer and almost back to his old self. So everything at this point is managed with a 25MCG Fentanyl patch for pain and 50mg of Nortriptyline to help nerve pain. He has perocet for breakthrough but really hasn’t needed that since Christmas.

Now that everything is under control, our Oncologist (Dr. David Lessen in Fort Lauderdale) gave Ben the go-ahead to restart chemotherapy. He restarted this past Thursday – January 5th. Same protocol as before since it worked so well (Gemcitibine and Cisplatin combo). Unfortunately, it took almost the whole day – his port seems to have become clogged and it was dripping soooooo sloooooow. I finally asked them to put the IV in his vein. They are now scheduling him for a “clean-up” of his port.

Ben made it through his first round quite well, no nausea and vomiting just like last time. What’s different is he isn’t staying up all night like he did in the previous rounds (I presume some of that has to do with his pain meds that make him a bit sleepy). He also started right off with going for more fluids the next day to prevent dehydration – which we started the last few rounds of his last treatments and it seemed to help. He even drove himself for the extra fluids and managed the whole day while I was at work – which I consider a huge TRIUMPH!

He still has moments where he isn’t as clear and focused as he used to be, but for the most part he’s the same old Ben. Here’s to another successful round of chemo – so we can stop these new growths in their tracks!

Thanks everyone for your ongoing support. You are all amazing.

tom

Thanks everyone for your support. Margaret thanks for the advice on the Ammonia levels. Ben has an appointment with his Oncologist today so I will bring that up when they take his blood. Also getting him back into the pain doctor today to get an adjustment there as well!

tom