Update on Ben
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cudos to both of you… fighting cancer is a family/team effort for sure… hang in there. attitude is everything.
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.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
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
Marion – you are too kind. I agree I could have talked for hours. I know our paths will cross again (possibly in Sonoma County)!
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,
MarionTom:
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,
MargaretHi 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
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
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!
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
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