1

(175 replies, posted in General Discussion)

Where does the time go….

The last time I posted Ben was just coming up on 3 weeks in the hospital and was going to be released under Hospice care (hospice - such a scary word isn't it?).  Ben was released on Tuesday, September 23rd, and I was as nervous a mouse hiding in a garden of catnip.

I remember reading all of Lainy's posts years ago about Hospice and how wonderful they are, and I will say they have made the whole transition so much easier.  The first week was definitely "trying" for me physically and emotionally - getting all the equipment (bed, wheelchair, oxygen, meds)- but Hospice really takes care of everything and it was amazing how quickly they had everything delivered (I called them Tuesday morning and all necessary equipment was there Tuesday afternoon).

The first few nights were nerve-wracking - going from hospital 24x7 care to….me.  Ugh.  However, when Ben was released he actually was in decent shape - while he had a biliary bag to drain the ascites/bile that seemed to be pooling in his liver and a pleurex to take care of overflow in the lung, he pretty much was able to get around on his own with a little help.  (To this day the wheelchair, bedside commode and walker are still in the garage)!

The nice thing about being out of the hospital is SLEEP!  I'm still amazed at the number of interruptions that occur in a hospital- I realize that doctors and nurses and food and vitals and meds, etc. need to be administered - but I'm quite appalled at the number of times patients are awoken for somewhat minor things.  ( i actually tracked it one morning and in a 2 hour time span I think I documented 11 interruptions)!!!

Anyway -once at home, Ben regained strength pretty quickly in a few days….he could get up and walk around (briefly) with just a bit of assistance.  The first Saturday he was home he was feeling so well he did a walk around the outside of the house to critique the yard work….he kind of over-did it and ended up in pretty severe pain that night which we made the mistake of not getting in front of earlier.  So - I spent a sleepless night on the phone with Hospice nurses administering morphine by mouth, etc as he was having severe pain and respiratory distress.  Needless to say I was scared *&*@less.  ;-)    We learned our lesson - DON'T try to be TOUGH!  Get in front of the pain, once you get behind it it takes so much to get it under control (just like the hospice nurse said).  If you get one thing from this post - STAY AHEAD OF THE PAIN!

The two weeks since that event has been mostly uneventful.  While Ben sleeps a lot - A LOT!  He is actually in very little pain these days, just maybe one pain pill a day.  He is still draining bile/ascites into his bile bag, some days more, some days less (i've calculated on "heavy" days it's about 50cc's per hour, and on "light" days he can go almost 24 hours and get 300cc).  I haven't made any correlation yet.

I was happy that our GI/Oncologist from MD Anderson called me personally two weeks ago to check on Ben, she said he was such a fighter - and she hadn't given up and was still hoping he might be able to go back to the battle with Chemo again.  His local oncologist called me last week and he said if he stays stable and gets his strength back and gets bored - we should consider chemo.

I'm not really sure how all that will play out.  His last few rounds of chemo had really completely worn him down and that's when the infection started - however, just sitting around at home watching the bile flow doesn't seem like a great alternative.  I know Ben doesn't like it one bit that nothing is happening - so, I wouldn't be surprised if he might find his way to another chemo treatment - but to do that we would have to come off hospice at least "temporarily".  (Hospice really is a great option…I won't go into detail now, but it really can be the best of both worlds, a much better option than a nursing home and certainly better than a hospital…and it doesn't mean that you will be dying in a few days which is what most people think).

So, that's my long ramble for the moment.  Meanwhile, Ben is hanging in there, and honestly doing much better than I expected.  We have some happy moments, sad moments, loving moments and a little laugh here and there (just like Marion and Lainy had assured me).   I work for a great company and I have been working from home full time (luckily enabled by amazing technology) so I can still be productive and keep an eye on the King! (that's our friends nickname for him - King Ben!)!

Thanks for listening.

Tom

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(175 replies, posted in General Discussion)

I guess the good news Julie is that Ben has been around so long that there is so much to read!!  And while I don't post often, when I do I can get kind of wordy....

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(175 replies, posted in General Discussion)

Hello everyone.  Thanks for all your support.  This board is as amazing as ever.  Julie, you must have read an old update if mine from a couple years ago...but rembering the "praying for poop" comment again did make me laugh.  Ben has been on lactulose for a couple years to help control ammoniaevs so pooping is never a problem these days.

Things are a little better since my last post.  Ben had a chest tube put in a week ago for lung drainage, and that went to minimal flow and they took that out today and replaced it with a pleurex (small drain that we can suction out a few times a week).  His pain had been pretty and from that chest tube so with that gone his pai level has gone down significantly and he hasn't had any pain meds for the last 12 hours which is good news as he can get pretty loopy.

Fluid output from his biliary drain hasn't abated.  He put out 3600 ml yesterday.  They are giving him 2400 ml through IV per day and he drinks a lot of water.  Today, his GI doctor is cutting in IV in half to see how he reacts to that so at least it will help stem the constant output (which has reduced now), but as he said it's all a balancing act.

I met with home hospice today.  We are trying to take him home by mid-week.  I was worried that hospice wouldn't provide IV fluids or antibiotics  but was assured that hospice care has changed over the years, and while the goal is palliative care they will do some additional care to ensure comfort. 

Ben is pretty good, he went for a walk today and his appetite is still there so he's eating as well.  He does say he feels muscle cramping but with all the fluids in and out they is likely some imbalance that I'm going to follow up on.

Bens two brothers are here to help out so I get some time away from the hospital.  Yesterday I actually watched half a movie and took a little nap.  So that was good.

So that's the "stable" news for now.  Thanks again for all the love, support, positive vibes, etc.  Luckily because of this board, I've always known what to expect so I wouldn't be surprised.  I can't say it makes this phase any less sad, but I'm prepared and I feel the knowledge allows me to make much better decisions.

Tom

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(175 replies, posted in General Discussion)

It's definitely not getting better for Ben unfortunately.  The GI doctors say all the fluid is ascites, which I know is common from reading this board, it just wasn't as evident early on I guess.  His drainage is increasing at an alarming rate, yesterday was 3 L and the doctors say there really isn't anyway to stop it.  Still waiting to hear from MD Anderson but I'm not hopeful at this point.  Ben has fought this for so long and we haven't given up as he's bounced back before, but I will say it's not looking good at all. 

I wish I had better news.

Tom

5

(175 replies, posted in General Discussion)

Here we are at Day 15 in the hospital - a new record!  (Well at least for Ben anyway). 

Since I posted last (when I had to return from home from the family wedding), Ben had a lot of fluid collecting in his lung at an alarming rate.  The doctors decided to put in a chest tube to drain the fluid to be analyzed - and they drained a LOT! (if i recall about 2000 ml).  The procedure itself didn't take long - but he now has another drain (with suction) that's not so much fun.  That was on Monday, 9/15 and at this point there isn't much draining from the lung.  At least he was released from ICU the next day back to his "home" floor at the hospital.

Where it gets interesting is that his hepatic drain in the liver continues to drain bile - and lots of it!  I believe he is somewhere in the 2000ml per day on that (I will confirm).

Our local GI doctor is perplexed and he reached out to the team at MD Anderson to get their view and they also said they had never heard of the current situation - which originally the GI doc thought was a biloma or abscess but he's saying the fluid seems to be surrounding the liver (and they do believe that's some of what was going into the lung).

At least for now Ben is stable - he feels "ok", just on a lot of pain meds from the chest tube, but he is up and about from his bed (well at least up and over to the commode) but I'll take it.  I'm amazed at his strength and will to keep moving forward.

Meanwhile, I sent all of his scans to MD Anderson for the interventional radiology team to review to find out if they see something the local IR team missed.  The team of doctors caring for Ben both locally and at MD are diligent about helping him out. 

Ironically - except for looking tired, Ben still looks pretty healthy; he seems to be unique at every turn, and at 4 years - 4 years - 4 years (I can't believe it), with no transplant or resection - just chemo….he's truly amazing.

I'm so tired but when I look at Ben and his stubborn WILL, I can't help but continue on - it's truly inspiring.

tom

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(5 replies, posted in General Discussion)

Maria,

Sorry to hear about your mom, this site is a great resource for information and help.  I'm surprised UCSF won't see your mom either, but I'm not familiar with them.  I know when my partner was diagnosed they wouldn't start chemotherapy until his bilirubin was lowered (I believe below 4), so I wondering if that's what they are saying?

We live in Florida but consult with MD Anderson in Houston, which I realize isn't practical for everyone but it has worked out well for us but you do have to visit them in person.


Tom

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(175 replies, posted in General Discussion)

Thanks everyone for all the support!  Unfortunately, I couldn't make the whole trip or the wedding as Ben had a bit of a turn.  I was able to get back home for two days and I was fortunate enough to get to see the prenuptial practice and had the pre-nup dinner so it wasn't a total loss.

As for Ben, he had his lung drained of fluid on Thursday night, they got about 450ml and sent it off for testing.  On Friday they did an ERCP to see what was causing the bile "pooling" it he liver (that he now has an external drain to drain that).  After the ERCP he had labored breathing so they sent him to ICU as a precaution where he remains today (Sunday).

I met with the GI doctor today, they saw no blockage in the bile duct so he didn't need a new stent, but he is a bit perplexed as to what is causing this bile to pool up in his liver.  Interestingly, his liver panel is normal with his bilirubin at 1.0.  I did tell him from reading this board I understand that sometimes leakages seem to occur without an always apparent cause.  They do show an infection in the bile (enterococcus faecalis) and they just received an indication of a yeast infection in the lung fluid (specific strain yet to be identified).

He is on piperacillon and tazobactam along with myacamine for the yeast infection.

I am definitely starting to get worried now that he is coming on two weeks in the hospital and they still don't know what's causing all of this (well obviously the cancer but no specifics) and these infections are quite bothersome.  But, I know so many people have dealt with similar issues here over and over and they seem to come through, although I also know infections are a constant battle that doesn't always turn out so well.

I'm contacting our GI Oncologist at MD Anderson tomorrow to consult with our local GI doctor to see if they may have any insights as well.

Tom

8

(175 replies, posted in General Discussion)

Thanks everyone for your advice.  I am sitting on the plane right now heading for home.  It was a very difficulty decision to leave as Ben is still in the hospital.  He now has fluid in his right lung that they plan to drain, and he still may  need an ERCP to put another stent in, but remarkably he looks good and I do have a lot of support for him while I'm gone.

Melinda, I can't believe you read through all six pages (I tend to write a lot when I am out here, just not very frequently).  Marion, I'm trying to let go oft he guilt....I do know it's good for me and if anything happens I just have to jump on a plane and come back.

Julie, I'm headed your way....I'm originally from Sioux City, Iowa and that's where I am going so I will wave as I pass over you there in Marion.

Thanks everyone for all your support.

Tom

9

(175 replies, posted in General Discussion)

So, Ben had a procedure today to drain the abscess on his liver.   HIs GI doctor was surprised because he is draining bile vs. pus and he wasn't sure why that is happening.  Tomorrow, they are going to inject dye in him to see if there is a backup somewhere....the last they looked it didn't appear his stents were blocked, and his bilirubin has been low(ish), around 2.8.  He said they may put in another stent, plastic this time....he said if he has to keep going in he might as well use plastic.  Up until this year Ben has had good luck with his metal stents, but I guess after 4 years (wow, hard to believe it's been 4 years), I guess they are bound to have some issues.

I did some searches of liver abscesses and i do realize they are common, but couldn't quite tell if anyone had bile come out vs. pus. 

I'm also supposed to go home for a family wedding on Thursday.  I haven't  been home in two years and I'm feeling guilty if I decide to go (Ben's sister in law is staying with us in case I decide to go....and she is insisting I get away).....but I just don't know.

Another day of fun

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(175 replies, posted in General Discussion)

So - here I am again exactly one month from my last post and I think I must be in Groundhog Day.  Ben recovered pretty well from his last infection and restarted chemotherapy on 8/26 (GEM/CIS).  All was going well until this past Wednesday - 9/3 when he started getting a fever again, it started as a low grade fever in the morning and his Oncologist ordered blood tests and Leveaquin to try to get ahead of it without sending him to the hospital.

Unfortunately, the fever elevated quickly that day and a few hours later he had spiked to 103.9 - yikes!  So, obviously off we went to the ER (at least this time it was 4:30 in the afternoon vs. his usual 11:00 PM at night).  Anyway, once again he was admitted and the fever was brought under control relatively quickly and he's being treated with broad spectrum antibiotics (Vancomycin and Merrem).

For an added twist Ben through in some low platelets.  On Tuesday at his checkup with the dr. his platelets were 89,000 - by Thursday they had dropped to 29,000!  So, they did a blood transfusion (well I call it an "infusion"....as they just gave him blood - didn't take any out).

As of today (Friday 9/5) his platelets are on their way back up and he looks good.  Doctors are still trying to determine the source of these infections.  He had an MRI this afternoon and the GI doctor noticed what could be an abcess on his Liver.  He notice a pretty significant "growth" there - and he said there is no way it could be tumor because it wouldn't have grown that big in a month, so he was pretty sure it was an abcess and was going to have a CT scan and have the radiologist attempt to drain it.

So - more twists in turns in the road.  I'm a bit concerned because this will once again delay chemotherapy, and he really needs to get on a consistent path for that to keep things under control.

I'm off to investigate liver abcess on the board.  (this board is still such an amazing source of information)!

Tom

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(175 replies, posted in General Discussion)

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!

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(175 replies, posted in General Discussion)

Marion, all IV administered antibiotics right now.  He's on two:  1) Zosin every 6 hours and 2) vancomycin.

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(175 replies, posted in General Discussion)

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

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(175 replies, posted in General Discussion)

So - here I am again...back so soon! 

Unfortunately, not even two hours after my update on here last night Ben came down with another very high fever (102.9) - so off we went to the emergency room again.  As of this writing they still haven't found anything - his liver panel is higher (bilirubin 2.9) but CT scan, blood work, etc. aren't finding anything conclusive.

So, now this is the 3rd time since the end of May that Ben has experienced a high fever, not quite sure what to think of all of it...luckily they can get the fever down pretty quickly and antibiotics seem to work (along with that new stent in May), guess we will wait and see.

tom

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(175 replies, posted in General Discussion)

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

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(175 replies, posted in General Discussion)

Lainy, the GI doctor said the biliary tract was slightly blocked again so he put another stent in.  After that and the levequain and a few days rest Ben was back to normal.  His oncologist wanted to put him back on Chemo to not take any chances - he tolerates Gemzar pretty well so he went with a reduced dose. 

Marion - I filled out the Biliary emergency card - thanks for the input.  It was easy....I also plan to put Ben's information in the registry.  Its truly hard to believe he has been on this journey for four years - and also battled and beat Lymphoma during the journey!

And now this weekend is our 19th anniversary and we are packing for our Alaskan trip tomorrow - a cruise and train ride up to Denali National Park.  While i'm a little nervous if something goes wrong - we are both in good spirits and Ben seems pretty "normal" at this point so it should be a good trip - besides we've weathered every other storm so i'm sure we can tackle whatever else comes our way.

I will send pics if I figure out how to post them out here!

All my best to you - never give up hope!

tom

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(175 replies, posted in General Discussion)

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).  :-)

18

(175 replies, posted in General Discussion)

I can't believe it has been six months - SIX MONTHS since my last post (almost to the day).  And, to avoid the 25 lashes with a wet noodle from Lainy I figured it's time for an update.

I won't go through all the details of my partner Ben's history with CC (diagnosed over 3.5 years ago) as I have them in my last post for reference and my own chronological history.

Where I left off oh so long ago in October was that Ben had just left MD Anderson with a new metal stent (inserted into his old metal stent) to open up his bile duct.  He was facing starting chemo once again (only Gemcitibine this time vs. the Gem/Cisplatin combo), and he was NOT looking forward to it (who would) and had considered not restarting.

After much encouragement (aka pleading, beating and begging) by yours truly he did restart chemo at the end of October.  (obviously chemo is a personal decision - but my rationale is that he has always responded so well, so now was not the time to give up).

I'm happy to report that after Ben's most recent check-ups at MD Anderson both in January (where they were amazed his cancer had shrunk back again - and where they stated he is in their top 1-2% of patients with success with CC) and again in mid-April where everything was still "holding steady" that Ben has been allowed to go off his chemo regimin once again.  We don't know how long but typically it's 3-6 months depending on how things go.

It continues to be an amazing journey for Ben.  None of us thought he would be here at this point - and if he was we certainly weren't expecting him in the condition he is (you still would not know he is sick by looking at him).  While chemo and the fatigue it brings - along with the mental games terminal cancer can play with your mind can be sometimes debilitating - Ben seems to rise above it all, round after round after round. 

We recently moved back into our completely remodeled house in January (having moved out last May, moving again in December since we lost our temporary lease since remodel took longer than expected and our final move in January).  So moving 3 times in 8 months all while Ben was on chemo!!!  (Lainy, that’s kind of my excuse for not posting – besides the usual craziness at work).  But, my point is – as Ben would say “you can’t put everything on hold because of this because than you just sit around waiting to die”.  And now we have a beautiful home that makes us feel good – and right now he’s off his chemo so it’s all just in time.

So, the journey continues – uphill, downhill, sideways and so forth……but at the end of the day, I guess that’s life anyway with our without cancer.

Until next time – all my best (and I hope I don’t break a new personal record for time between my posts here.

All my best – and anyone can contact me at anytime for anything….

Tom

Lainy!

I'm a bit late to the trough - but I am soooo happy to read your news.  Congrautlations!  It's just awesome!

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(19 replies, posted in General Discussion)

Nat,

i agree with some of the others - you really need to get a second opinion.  I have been told by the experts (at MD Anderson - who treat more of this cancer than anyone else), that CC does not show up well on PET scans.

Since you are in Oklahoma, if its possible you should try to see the doctors at MD Anderson in Houston.  They are incredibly knowledgeable.  If you need any help just contact me through email or you can text - 954-401-1069. 


tom

21

(175 replies, posted in General Discussion)

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

22

(175 replies, posted in General Discussion)

Thanks everyone - it really is amazing, but realize we never know where the journey ends.  And, when we finish this remodel (hopefully November) if any of you are in the fort lauderdale area you MUST come to our party.

Tom

23

(175 replies, posted in General Discussion)

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 B) - 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

24

(175 replies, posted in General Discussion)

So, it's been a while again since I've posted.  I was on the other day but after the news of Lauren, I wasn't in the mood to post.

Ben continues on his journey with Lymphoma - he's settled into his new chemo regimen - and has finished 5 of the 6 recommended rounds for this protocol.

After three rounds - he had a PET scan and the scan didn't detect any lymphoma.  WOW!?  Really?  We were quite surprised and I think our oncologist was as well.  While Ben does have a curable (although agressive) form of Lymphoma, I don't think any of us were expecting it to undetectable after 3 rounds of chemo. (two weeks on, one week off).

Ben is contiuning with chemo, as we all know that with any cancer not everything is detectable through a scan, so they will continue the standard protocol.  We are going to visit MD Anderson again after his sixth round - they may decide to do two additional rounds of chemo just to ensure the Lymphoma is gone for good.

No sign of the CC rearing it's ugly head right now. Ben seems to endure this chemo pretty well.  We recently moved out of our house to do some major renovations.  We had been planning before he got sick, but now it's been so long we decided just to go forward.  Ben is kind of making it all happen - which is truly amazing. 

In August it will be three years since Ben was diagnosed with Stage IV, Intrahapetic CC.  Despite all the sadness and prognosis....you just never know what will happen.  You just have to hang in there, live your life and hope.

tom

25

(167 replies, posted in General Discussion)

I haven't been here for so long and today, I felt compelled to check the board.  There are no words.

tom