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Yes his fever is gone which is good news. Just waiting for the antibiotics tondo their work! And you are right Lainy…I think Ben just does it for the attention!

Yes, a blood and urine culture were done. They said he has a bacterial infection : gram negative rods. Still not exactly sure what that is but could either be from a port infection or could have been a small amount of bile that got stuck in the stent and caused an infection. He’s still on antibiotics and they added Ursodiol to thin his bile.

As for the stents, he has only metal stents, no plastic so they can’t be replaced, but they did a HIDA scan today (a new term I had not heard of before), where they inject him with dye and watch it go through the bile duct and everything looks ok.

So, now we just wait for the antibiotics to do their job.

Tom

Hello everyone!

So….Ben and I made it through our vacation in Alaska. It was a great trip!! Only one minor “scare” where half way through our cruise he got a high fever (102 degrees) – this had happened in May over Memorial weekend where he ended up in the hospital for a couple new stents…so I was pretty worried. We met with the ships doctor and he seemed to think it might be a urinary tract infection based on blood work. Luckily, I had asked our local GI doctor for a prescription to an antibiotic before we left – Levaquin…which worked well in May. So – with the help of Tylenol and Levaquin we decided to stay – we kinda figured the worst that could happen is a helicopter “rescue” in the middle of Glacier Bay – and what a story that would be!! Anyway – the rest of the trip was uneventful and truly extraordinary so it was a great break for both of us.

Ben did just have his quarterly checkup at MD Anderson two weeks ago (July 22nd). We really weren’t expecting good news, as we already knew the cancer was “on the move” from the slight growth and new stents in May. And, as expected – things were growing…..not a huge amount but it was definitely bigger than it was in April but not as much as a year ago in October. Honestly, I think both of us were somewhat relieved that it wasn’t worse.

MD Anderson recommended Ben go back on the CC recommended protocol (Gem/Cis combo) – he really hadn’t been on that for almost two years (he was busy curing himself of that pesky Lymphoma last year), and has mostly been on just Gemzar as its not quite as invasive.

While the news wasn’t “great” – our doctor (Rachna Shroff – amazing), reiterated that she normally doesn’t get to talk to patients at the four year mark – so Ben is still doing quite well (and you would never know he was sick by looking at him).

So, Ben started the big GEM/CIS combo on Thursday (7/31) – it has hit him pretty hard…he’s been sleeping almost the whole time since thursday – he does get up to eat once in a while, and have something to drink but it’s definitely been tough. Luckily, he still doesn’t show any of the nastier side effects.

That’s the news for now – you are all always in my thoughts….should be an interesting summer!

Take care,

tom

And the journey continues. My last post in April had Ben just finishing his latest round of chemotherapy with a break approved by MD Anderson and our local oncologist here in Fort Lauderdale.

Ben has been doing pretty well – the break from chemo was welcomed – unfortunately Memorial weekend he developed a high fever (102.5) so we took him to the ER – where they were able to control the fever while they did additional testing.

CT scan revealed some very partial blockage of the biliary canal – and our local GI doctor was able to put yet another stent in the prior stents that were done in January (and over three years previously). I do wonder though if it was really an additional blockage or from an infection that can occur sometimes with all of these stents.

As a precaution our doctor put Ben back on Chemo (gemzar only once again) since he responds quite well to that treatment. It was somewhat of a disappointment as we have a 2 week cruise/train vacation planned in Alaaska starting this Sunday (june 29th – also coincidentally our 19th anniversary). Our oncologist is sending us with his blessings as he just wanted to make sure we didn’t take too much risk – but it was still a bit tough mentally for Ben (and both of us) since he had just finished in April and we were hoping to have a few months without a break. We also wondered was it really the cancer – or just an infection; but his bilirubin had climbed a bit and so probably a safe bet to put him on chemo.

Anyway – that’s my update for now. Ben is sleeping a lot this week to help him get rested for our vacation in a few days – and I’m crossing all my fingers and toes that our long awaited vacation goes off without a hitch.

tom

(p.s. – I love the look and feel of the new website).

After another “dry spell”, here I am back with another post on the CC board. Unfortunately, Ben’s good ride had had been enjoying now has a few bumps in it.

Just a reminder – after battling Stage IV CC for three years, Ben was diagnosed with Lymphoma in January. His chemo regimen switched to a different protocol to clear that up first as it was quite agressive (but at least curable).

At the end of June – chemo was done and PET scans showed no signs of Lymphoma – and they couldn’t really see the CC (although PET scans don’t show CC as well as CT scans).

Ben was “chemo free” for the summer which was a nice break and allowed us to focus on a few other things for a change (a little travel and the remodel of our house).

On October 7th we returned to MD Anderson in Houston for a quarterly checkup. Their PET scan revealed that the Lymphoma is still gone (they consider that in remission), but it did show some lesions in the liver again – which they assumed is CC. They did a biopsy of the liver just to make sure it was CC vs. Lymphoma – and the test came back positive.

A couple weeks before heading to MD – Ben was complaining of digestion problems and a bit of stomach pain (so we were a little suspicious, but hoping it was nothing).

It turns out the new lesions were once again blocking his bile duct and he started to turn Jaundice (it’s amazing how quickly that can come on – really started while at MD Anderson and got worse over the next few days). Luckily the doctors at MD were able to put another metal stent into the biliary tract to open up the bile duct again.

While we were certainly discouraged about the news – the doctors were still positive. They said they would have been surprised not to see any growth because Ben had been off Gemcitibine since last December – so it had been almost 10 months for the CC chemo (since the treatment for Lymphoma doesn’t work on CC). The GI Oncologist at MD (Dr. Shroff) said she wasn’t nervous about what she saw….and since Ben has always responded to chemo well – she was hoping it would be the same.

We have since returned from MD – Ben has a plastic stent in his Pancreas that has to come out next week (this was temporary to prevent pancreatitis from the procedure to put in the metal stent). Chemo will start again on November 1st. The doctors have recommended that he only take the GEM (vs the GEM/Cisplatin combo) as it’s easier to tolerate then the combination and they consider GEM as the “workhorse of the two.

Ben’s spirits certainly don’t seem to be the same – and while his jaundice is gone, he does still have some stomach pain – and he just hasn’t felt that great since returning (I’m sure the combination of both the physical and mental toll of it all).

So, not the best situation – but certainly could be worse given the circumstances. We are both pragmatic enough that we didn’t think CC would be gone permanently through Chemotherapy (as I’ve never read a case where that has happened), but we were hoping it would stay away a little longer to at least get through a holiday season without chemo.

I’m a little worried this time – how long can the body take chemo? But – luckily Ben is a strong man and hoping he endures it as well this time as he always has.

All my best to all of you.

tom

Ben 2 – Cancer 0

Probably should be posting this in the good news section – but I like the continuity on this post.

I realize not everyone is familiar with my partner’s Ben situation so I will try to recap as briefly as possible:

1) August 2010 – diagnosed with intrahepatic Stage IV CC. Standard prognosis of 6-18 months to live.
2) On and off chemotherapy with the GEM/CIS protocol – no severe side effects, but has had the usual rollercoaster ride of hospitalizations, pain – one surgery to bypass CC at the end of his stomach.
3) Was to restart chemo in January of 2013 and was diagnosed with Lymphoma (large type – curable, but WTF? CC chemo was stopped to target Lymphoma.

The big news – Ben just finished the standard protocol chemotherapy for his Lymphoma, had a PET scan last Monday and we received the results Friday. No lymphoma is present. So – Ben has kicked the Lymphoma.

The PET scan didn’t show anything in the liver either – although CC never showed up well on PET scans – but they don’t see anything at this point. Given he has been through so much chemo – and they don’t see anything, Ben is considered in kind of “remission”.

The doctors are kind of amazed – still currently you would not know by looking at him that Ben has been battling cancer for 3 years – and kicked it’s butt twice!

Who knows what tomorrow will bring, I’m pragmatic enough to know that CC is likely lurking around – but right now it seems to be kicked into a deep dark hole….

That’s the news for now – its pretty astounding.

Tom