Re: Update on Ben

Ben/Tom,
What part of Lauderdale do you live in? I was born/raised, lived in Wilton Manors (Oakland Park Blvd and 16th ave), went to Wilton Manors Elementary, Sunrise Middle, and (wait for it....) Ft. Lauderdale High class of '89. Lettered in football, soccer, and co-captain of the baseball team!! I loved the boat parade, we have one over here in Sarasota as well as the Venice Boat Parade too! Glad to hear Ben is doing better, all the best wishes for you guys. I'm starting my chemo Friday, I'm optomistic, but not sure how I'll handle it. Thanks for your posts, it keeps us all connected with this disease and is much appreciated by all...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Update on Ben

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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

Tom, nice update and good to see you again! I would only say that I am not happy about the pain. It's not just the discomfort but it uses up Ben's energy. Have they tried anything else. I think that no one  should have to live with pain. Mmmm The Fentynol didn't work for Teddy. He did really well when they started him on low doses of Morphine. Just say'in. Hugs to Ben and thanks for the update, hoping they get that pain under control.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

Tom & Ben, it's so good to see your smiling faces again and thanks for the update on Ben. Sounds like he is doing pretty good except for the chemo brain. I was just talking about you guys the other day and hoping everything was going well. Looking forward to an update after the MDA visit! Take care and I was missing your updates, you write so well!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

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

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on Ben

Hello everyone, Ben and I were at MD Anderson over the weekend.  CT scans on Saturday and met with the Doctor on Monday.  Our goal of the visit was really just to confirm what local radiologists were seeing on Ben's scans vs. what MD Anderson might see - and get any advice on next steps after this protocol is done.  (He is currently in cycle 3 of his second round of Gem/Cis - the first round ending in April of 2011) and get any advice on what next steps would be after this full regimen.

Overall, MD was pleased with where Ben is at;  the primary tumor seems really mostly stable since last April; they noted the slight growth that caused the blockage at the end of his stomach that resulted in a gastrojejunostomy (I can't believe I can spell that now without looking it up) last October, and the growth that abuts the pancreas that accounted for the severe pain in December.  All of which appears stable.  The doctor recommended that he continue with the current standard Gemzar/Cisplatin protocol (Although MD's recommended protocol is every other week vs. two weeks on and one week off, but we are doing the latter).

A few interesting notes from the Dr:

1) Stick with CT scans (we had brought a combination of CT and MRI scans done over the past few months).  For consisteny of reading they highly recommended CT scans as being more accurate - especially because Ben has growth around his stomach they said CT scans do a better job in that area.

2)  They were surprised that after the 1st, 8 cycle regimen was completed last April that Chemo was stopped altogether.  Their recommendation is they typically do indefinite "maintenance" consisting of either Gemzar every other week or possbily oral Xeolda or Tarceva (Erlotinib).  They said they have been doing studies in pancreatic cancer and have found that for people with a certain mutation (didn't get what it was) they respond positively to Tarceva.  They are going to test his tumor for the mutation and said if he's positive they will likely recommend that after he completes the Gem/Cis protocol. 

3)  They found a small blood clot in his right leg; they said it looked like it had already started shrinking since the scan done at home on 3/5/12 - however to be safe they started him on the blood thinner Lovenox.  This is why we wanted a second opinion on scans.  Why didn't our local radiologists see this? 

4)  The primary tumor is becoming "fibrotic" they read this as a good sign that's it's reacting to the chemo (as it is killing the outer membrane) and overall it has been stable since scans done locally on 8/3/11.

5)  They are watching an area of "subtle nodularity" along the greater curvature of the stomach.  This was not seen last April and it may represent a small local implant; but they are hopeful this will shrink given the favorable response the GEM/Cis combo seems to have with Ben.

6)  They did say if they see all the areas "shrink away" they may recommend local radiaion in the liver as well - but for now continue with the current protocol.

The doctor said they don't "put numbers" on prognosis - she said right now he appears so healthy and the numbers wouldn't represent where he is now anyway.  So, just continue forward.  Overall, I would say it was a very positive visit.

One thing I do regret is I didn't bring up the issue of surgery.  I know it's been discussed on this board for those who have Stage IV (and I have now read a few examples of where people have done that now), but both originally at Mayo Clinic and subsequently at MD, they both ruled out surgery as an option given the Stage IV diagnosis.  They didn't bring that up yesterday (nor did I think to ask), but I will follow-up with our local oncologist again on that.

So - that's it, sorry for all the detail - but this helpe me document the event for us (and others) as well.   

And now for the BIG NEWS!!  Our very own Marion is in Fort Lauderdale today to catch a flight home - and I get the priviledge of meeting her in person for coffee.  How FANTASTIC is that?  I am so excited.

Thanks everyone as always for all the support!!

Tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

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!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Dear Tom and Ben,

Great news on Ben and how exciting to meet Marion!! She is such an awesome lady. You are lucky to get to meet her! Let us know all about it. Take care you two.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on Ben

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

Tom:

Tell Ben to continue to keep KICKIN' THAT cancer!  Everything sounds pretty good for him right now and I hope and pray that trend continues.

Hugs,
Margaret

Re: Update on Ben

We did it.  Tom and I met up in Fort Lauderdale.  As usual I got lost (doesn't take much) and dear Tom had to change our location to something acceptable to my GPS system. 
In a strange way we become intimate with each other on this site.  We share our inner thoughts, fears, happiness and joy, etc., and yet a personal meeting gives it a finishing touch.  I wish that we could have talked for many more hours, but with my upcoming flight and Tom's busy work schedule we had to say good by way too soon.  Tom is caring, kind, smart, and handsome.  (Sorry Tom, I had to add the later.)  I can't wait to return to finish our conversation.  There was too much left unsaid.   
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on Ben

Marion, that is just way too cool! Somehow, I guessed Tom would be all that.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

Tom...promise?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on Ben

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

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

Great to hear from you, Tom. You know you are forgiven for not writing sooner. I was wondering how you and Ben were doing. I am happy to hear he is managing as well as he is. That is great news. I know little set backs happen from time to time. I think we all face that. I am so happy Ben is still able to travel. Sounds like a wonderful cruise to some great places. Don't be strangers and it was really nice to hear from you. Take care.

Love and hugs, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Update on Ben

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.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Ha, ha, Tom.  I was awaiting Lainy's reponse to your overdue posting.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Update on Ben

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

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Update on Ben

cudos to both of you... fighting cancer is a family/team effort for sure... hang in there. attitude is everything.

Re: Update on Ben

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

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Update on Ben

Thanks everyone for your support...and I completely expected the big wet noodle lashing from Lainy!  I will TRY to visit more often!

tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".

Re: Update on Ben

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!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Update on Ben

Speaking of red sauce - throw some on Lainy and beat me with it - because here it is - another 3 months without a post.  Unbelievable how time flies.  This continues to be one of the busiest times at work in my career I think so I definitely don't get out here as much as I should.

So - I'm posting here because I still have the synopsis of my partner Ben's journey the last couple of years posted a few posts above.

Since that time; we never were approved for Tarceva (after two appeals to the insurance I went to our benefits partner in my companies Human Resources department - they said I could do a third "peer to peer" appeal where our doctor could talk to a doctor at the insurance company to determine if Tarceva could be a fit.  (The cost was $500, but my company said they would pay for that).

Meanwhile - to even get a ruling on a 3rd appeal was too long so our local oncologist in Fort Lauderdale put Ben back on the Gemcitibine/Cisplatin combo; although he goes with about 80% of the dose so it doesn't whack (technical term) Ben out too much.  That all started on October 20th.

Since Ben restarted chemo, things have been going fine.  He just finished his 3rd round (of 8) today.  Overall his mental state, fatigue, etc seems to be under control.  At the start of this protocol he went off his pain patch (low dosage 12.5 mcg Fentanyl) and has been without it ever since. 

Even now - to look at Ben you would never know he is sick, he looks good (just a bit of hair loss this time), his mental acuity almost seems normal (which it hasn't for a long time) and he is driving again (small trips, etc).

This Monday (12/10), we made our quarterly (or so) trip to MD Anderson to check in with the GI Oncologist who has been monitoring him.  We like their radiology department there better so we have scans done there as well. 

MERRY CHRISTMAS!  The doctors saw the scans and as of now everything continues to be stable since the last round of chemo ended in June.  When we reminded them that Ben took the summer off of chemo (about 3.5 months) they were AMAZED.  That's what the said - "well that's amazing" no growth and no chemo for that long doesn't happen often.  They said Ben was in their very small percentage of "Marathoners".  So all that adds up to a Merry Christmas!!!

With all that good news including Ben's well being we are going home to see my family in Sioux City, Iowa for Christmas - I haven't been home for Christmas in 3 years, so it truly is almost a miracle consider last year Ben slept through most of Christmas.

Anyway - that's my update for now; probably should be in the GOOD NEWS section - but I like the continuity here.

I see our Moderators are still all here - and we've added Pamela - what a team; your relentless devotion is truly inspirational.

As always, I'm always willing to share email or talk - just email me from here and I will respond as clearly I don't get out here as often as I should...but who knows - maybe this time will be different (but Lainy keep the noodles wet).

Tom

Biggest fan of my partner Ben (51) who was diagnosed in August 2010 non-resectable stage IV.   Our new motto:   "taking it one day at a time".