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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

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

It’s been quite a week. As I last reported, Ben entered the hospital on December 11th, with severe pain. After a week of CAT scans, MRI and Bone Scan (all showing no major growths), the doctors concluded that the cancer in the area that blocked the stomach is irritating the surrounding nerves and causing the pain.

It’s a litle depressing knowing that after 7 nights in the hospital there isn’t much to be done but manage pain, at least with the last hospitalization the surgery helped relieve the problem. But, as I’ve read on this board it does get to this point for many people.

Unfortunatley, we didn’t make it out of the hospital in time to go to MD Anderson in Houston so I had to cancel our trip there. While disappointing, it really was just a consultation, and while they tend to “see” more in their scans/radiology – I’m not sure it would actually change the next steps – which is Chemotherapy to restart next week. Since Ben had so much success with the Gemcitibine/Cisplatin cocktail, that’s the approach they are taking agin – which makes complete sense. We talked about rescheduling the MD Anderson trip on one of his first “off weeks” from the chemo regimen.

As for managing the pain, we still haven’t stuck the perfect “balance” of too much sedation (Ben is can still be confused and not quite coherent) and reduced pain. We are working with a pain doctor recommended by his physician who says he has been quite successful in strking the right balance with cancer patients. He said that while Ben will likely not be able to eliminate all the pain, he can get close and still keep him about his wits. Things do seem to be improving, as we have gone from a 50 MCG Fentanyl patch down to 25 with Percocet for breakthrough pain. The doctor has also prescribed Nortriptyline (25mg) to help with nerve pain.

They had considered a Celiac Plexus Block , but he said that can have complications and side effects, and he wanted to try to manage through pain medication first and use that as a last resort.

So, as of this writing – Ben still has some pain and confusion but we are getting to a closer balance. Luckily I can work from home and monitor him closely, documenting when he feels pain and what I’m giving him. It’s a bit stressful – especially with the holidays. I can’t help but think it’s the start of a downhill slide – but Ben is still overall healthy…blood work good, no major growth and is still eating pretty well, so I’m hoping for the best and keeping the bad stuff in the back of my mind as much as possible.

tom

So, the next battle in the bigger war seems to be over. Ben was released from the hospital two days ago after his surgery to reroute his small intestine and bypass the blockage at the end of his stomach. He is recovering well – and the doctors say he can eat whatever he is hungry for (although his appetite hasn’t been so great). Of course this last turn of events has us anxious, and every discomfort in digestion has us wondering what else might be lurking out there (although the surgeon couldn’t see anything else in the immediate area. While I’m not at all religious – I have coined the new term “praying for poop”. (a sign that all is well)….how crazy is that?

tom

So – here I am again posting in the good news section – something I wasn’t expecting. I feel somewhat guilty for not visiting the board more often – but have had an incredibly busy summer at work and at home. I think of everyone out here often, but admittedly sometimes struggle with getting here as I do find it emotionally difficult.

I know everyone is aware of the rollercoaster that CC sends us on – and every scan brings a new ride. You will see in my history that my partner Ben was diagnosed about one year ago (last year at this time we were at Mayo Clinic in Rochester, MN). He successfully finished the standard gem/cis protocol in April and outside of fatigue at the end had very few side effects.

His first two scans after chemo were very positive and our local radiologist could not see anything remaining in his liver. We sent one of the scans to both MD Anderson and Mayo Clinic for a second opinion in July – and both came back and said that the tumor in his liver was still there, but both said it had been reduced by almost 50%. So, while we were disappointed that it wasn’t “gone”, the doctors were still elated that it had reduced by 50% (this shows why it’s always good to get a second opinion on everything).

Also, late in July our oncologist called and said that Ben’s kidney functions in a blood test showed some deterioration – so he sent us to a kidney specialist who ordered an ultrasound and additional tests. That of course added to our anxiety level.

Luckily – I am still reporting in the good news section. This past week we had follow-ups with both the kidney doctor and our oncologist after Ben’s new scan on 8/30/11. The Kidney doctor said the ultrasound showed no abnormailities – and his kidney function is within a fairly “normal range”…so he suggested no major changes to diet, etc. The radiologist report once again reported no new growth and not really anything much of interest (we are going to send these scans again to Mayo and MD), but our Oncologist continued to be encouraged and a bit amazed at Ben’s present state.

So – at this point, one year from diagnosis (with a 6-18 month prognosis), Ben’s CC has been reduced by at least half and is somewhat undetectable (although we know it’s still lurking), he feels absolutely normal – there are no side effects, he goes to the gym, all his hair has returned and we are now planning our fall vacation schedule. Our Oncologist said that it would be at least 2 months until the next scan so we just continue on.

So, that’s all for now, we just continue to live one day/week/month at a time – as always if anyone at anytime wants to be in touch just click my email link to the left and you will get my email and I promise to respond.

Tom

p.s. Marion – if you read this I haven’t forgotten about the conference in Miami in October – but I’ve forgotten the specific conference and dates. If we aren’t traveling on vacation I still plan on helping out so let me know the timing again.