Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Marion, I would live to meet you in Miami for the conference.  I probably can't do the whole week with my schedule, however, I would like to do whatever I can so we can touch base as we near October.  No matter what, we definitely need to meet since you will be so close to me, I would love to meet one of my inspirations on this board.

We will be in touch,

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Thank you, Tom.  An entire week of commitment on your end is not necessary; one or two days will be plenty enough.  Definitely, we will stay in touch.
All my best wishes,
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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Wow, I can't believe it's been almost a month since my last post! I'm sorry for not posting an update for so long but there really hasn't been much to write about (which I am very thankful for) and we have been so busy here!

Ben just completed the first administration of chemo on his seventh cycle yesterday (March 3rd).  It's still amazing that he continues to do has well as he is.  The only side effect he continues to show is increased fatigue, otherwise no increased hair loss, no increased neuropathy - just a little bit of "chemo fog" which usually shows itself as a bit of memory loss.

To help deal with the increasing fatigue, the doctor has been giving more fluids during the last few rounds of chemo - and for this round he has asked Ben to come in the following day (today) for additional fluids.  He is hoping this helps ward off the increasing fatigue. 

The doctor continues to be very pleased with Ben's overall health.  All of his blood counts continue to show those of a healthy man.  Only once during round six did his white blood cell count drop a bit lower, but they bounced back the following week.

So, for now - the fatigue is the biggest factor.  He now tries to take a couple of breaks during the day - with at least one nap of an hour, but given everything he has been through that seems pretty minor.  He has stopped going to the gym as that wears him out too much, but he is still very active around the house, with friends and with our local town activities.  His brother and sister in law were in last weekend and stayed with us and we had a great time.  Ben even got on our jetskis for a while - and gave me my first lesson....so I was thrilled!

The doctor told us the plan right now is to finish 8 rounds (so three more administrations) of chemo, then take another scan then determine our next plan of action from there.  He actually seemed quite optimistic - he even used the words "IF the cancer is still there we can decide how much of a break you might need, or if there is just a small amount, possibly continue a bit more".  In the end, he said it will be up to Ben and what the scans show, how he is feeling etc.  All of it sounded good but of course until we get the scans it's hard to say.  I actually thought the doctor sounded more optimistic then he should - but hey, I would love to have that then the opposite, so we will just see what happens by the end of April.

That's it for now - pretty much status quo (which is good news as far as I'm concerned).  We are still just living our normal lives outside of the "bother" of chemo once in a while and just fitting in a few more periods of "down time" and naps. 

If anything happens for better or worse I will certainly keep everyone updated, but if you don't hear from me, it just means things continue to move along.  I still don't get out here as much - selfishly it can sometimes be very difficult to keep up with everything and I've been so busy with work, visitors and Ben it's hard to keep up.

But, anyone can always reach me on my personal email if you don't see me out here (although I do check in from time to time, I just don't post much anymore).

Take care everyone - you are always in my thoughts.

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Wow! Wow! Wow! Tom, Ben is a Wow factor! I am so very pleased to hear this wonderful news. I will keep everything I won crossed for more good news after his scans. Whatever you guys are doing....it works!!!

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Round 7 done!  Ben just finished round 7 of his Gemzar/Cisplatin cycle on Thursday.  The doctor started giving him extra fluids the following day to battle fatigue and that definitely seems to be helping.  He is a bit tired the first couple days after chemo, but he seems to be bouncing back (but still with one or two naps a day). With only one cycle left, we are still quite thankful to be in the position we are as we are still living our normal routine. All of his blood counts, bilirubin, etc. continue to be at normal healthy levels.

I am now curious what happens after round 8.  The Dr. said he will need a break, but I'm wondering how long it will be (I am sure that will depend on what the scans say).  I have been researching what others do after they finish their Gem/Cis protocal, but so far haven't found too much but I will continue to search the board.

Take care everyone,

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom, glad to hear Ben is doing so well. I would imagine the Doctor will give him a break and then a scan to see how it is all doing. Not sure about chemo but I know when Teddy had radiation the doctor said it would keep working for about 3 months after the last session. Its so good to hear good news from Miami!

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.

32 (edited by Tlsinftl Thu, 31 Mar 2011 12:43:12)

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Round 8 Completed!!  As I sit and type this, Ben is about one hour away from being done with his last chemo treamtent in Round 8.  He made it all the way without a break. 

After round 7 he started feeling numbness on his skin for a couple of days, but it went away and was minimal during the first treament of round 8.  Other then that - pretty much status quo, just the usual "bothersome" fatigue but it really never did get too bad.  Actually, once the doctor started giving extra fluids the following day after round 6, the fatigue wasn't quite as bad.

What's most amazing is this past week is about the Ben has looked since he started chemo.  He even feels good, he stopped taking naps during the day because he thought they made him more tired.  On Tuesday he was up at 8 in the morning - had a busy day around the house, we had friends over for dinner then he was up until almost midnight rearranging the office - go figure!  Maybe he is Super Chemo Man!

Today, the doctor said his blood work was still very good, his Neutrophil (white blood cell) count was very close to the border of not getting chemo, but he was right above so he went forward.  Amazing!

So, here I sit - with mixed feelings knowing that the Chemo is ending - hurray!!  But, knowing that it seems to be keeping his CC at bay - so wondering what happens when it's over, so that fills me with anxiety.

Next steps for us??!!??
I am traveling to Edinburgh, Scotland for work on April 6th and Ben is going to meet me in Frankfurt Germany the following week where we will drive to Luxembourgh to stay with friends and travel around in that area for about 10 days.  We are definitely both looking forward to that - the break from doctors, needless and fatigue will be nice.

When we return the week right after Easter Ben will have an MRI and CT scan of his chest and liver to see what the last four rounds of chemo have done.  We are hoping for the best of course - and based upon how he feels now we are optimistic.  He has really had an incredible attitude through the whole thing - and even with the upcoming scan he says he's not going to think about it:  "it will be what it will be".

So, that's the status for now - just more of the same (which of course is the best we could have hoped for).

I still try to keep up here (not doing very well), but as always I promise to post anything as status changes (HOPEFULLY IN THE GOOD NEWS SECTION)!!

If any of you out there are near Edinburgh, Scotland (Gavin if you are reading this I'm not sure how close Dundee is), or Frankfurt, Germany or Luxemburg let me know and I will try to stop by to meet you on my travels.

Take care everyone!!

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

YEA! TOM and BEN!!!! You have made my day, week and month. I am beaming with happiness for you both. In fact I am laughing as in my mind I picture Ben "jumping" in to the Chemo room in tights and a cape and yelling out, "never fear Super Chemo Man is here"! What a nice trip you guys will be taking. Oh, I so hope you can meet up with Gavin that would be wonderful. We forgive you for not writing often but not if you don't keep us posted. Have a wonderful and safe journey!

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom...fantastic news.  Certainly you will enjoy your trip abroad?  When are you leaving?  I am mentioning it because; I will be in Germany for one month beginning June 16th.  Luxembourg is not far from where my mother lives and neither is Frankfurt.  Possibly, in addition to meeting up with Gavin we could also meet. 
If not of course I am still hoping to meet up with you in September at the conference.
Most of all:  enjoy, enjoy, enjoy.
All my best,
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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom & Ben - Wonderful news.  I visited Luxembourg 35 years ago while on my honeymoon.  Your message made me smile in so many ways.  Best wishes - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Marion - we will be in Europe in a couple of weeks, so looks like we will miss you while you are there in June.  I definitely plan on catching up with you at the conference so keep me posted!

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

I just noticed your post, that is great news that Ben is coming to the end of his chemo and that he is feeling and doing so well, excellent news indeed!! And that is great as well that Ben has such an incredible attitude and I do like the "it will be what it will be".

That sounds like you will both be having a lot of fun in the coming weeks with the 2 of you going on your travels. How long will you be in Edinburgh for? Edinburgh is about an hours drive from Dundee, so if you want I could come through and meet up with you if you like. Sounds like fun to me. I take it you will be staying in Edinburgh and have you been there before? Let me know if you are up for it and we can take it from there.

My 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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Gavin,

I would be thrilled to be able to meet you if we can make our schedules work.  I have received so much support from you and the other moderators here, it would be my honor.  I will let you know the details of my visit and see if we can connect.

Tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

OMG! I am so highly jealous and wish I could be there too, to meet Gavin and Tom. You guys just have no idea yet what it is like to meet one of our family! The feeling is like the biggest high in the world! Sure hope you can pull this off.

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Yes that would be great if we could meet up and lets hope our schedules allow for this. I could jump through in the evening if you are working and that would be no problem for me, would only take an hour so from here as all the traffic is heading out of Edinburgh early evening. Edinburgh is a nightmare for traffic with all the commuters from the surrounding area! Looking forward to hearing from you soon and so hoping that we can pull this off!

Best wishes,

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Lainy,

Wish that you could be there too! But you and I will meet and I guess I need to think about getting a passport sorted out very very soon!

Best wishes,

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Tom,
Glad to hear that Ben made it through no worse for the wear. I am looking forward to the end of chemo and the beginning of summer. Sending positive thoughts on any upcoming news and have a great vacation.
Shari

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hello Everyone,

I'm back from my 2.5 week work/vacation travels.  Unfortunately, my schedule was too packed to meet up with Gavin on my trip to Edinburgh - we tried, but I just couldn't make it work - so hopefully Gavin we will meet on my next trip there!

We had a great time on vacation with our friends in Luxembourgh and we managed to "sneak away" and took the train to Paris for a night - which was very fun (but too much to see in a day).  But, it was great to get away - Ben held up very well during the whole trip....the last day or so in Paris he did get a slight fever and he felt some bloating (so both of us got a little worried), but we put him on some Cipro we had taken and his fever went a way fairly quickly (and we kept him on it for a few days).

So this is the big week for us - today he went in for an MRI and CT scans of his chest and liver to see what the last 4 cycles of Chemo has done.  I will definitely say I'm incredibly nervous but hopeful as well.  We meet with the Doctor this Thursday to review the results so we will know very soon.

Positive thoughts everyone and I will report back on results after Thursday.

take care,

tom

My partner Ben was diagnosed in August 2010 with non-resectable stage IV intrahepatic CC with 6-18 months prognosis.   He was 51 at the time - and he is now 55. 

Don't give up!

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

I MISSED you but so very happy you guys had such a great time. Hope you get to meet Gavin the next time. I know what you mean by pre-Scan jitters. Boy, we really learn to be strong here don't we? My thinking is that since Ben fared the trip so well and that is a strenous trip, what could be wrong? Maybe you guys will have discovered that the best RX is a trip to Europe! Best wishes for good news!

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: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Many, many postitive thoughts being sent your way!!!Sounds like Ben is doing excellent! You are a great team! Our team, Doug and I, are doing well too. Doug goes for the last of round 7 on Wednesday, then a week off, then on to round 8 - going for the knock out!!! We are close behind you. I too noticed each session brings more fatigue but Doug's health is better, so hoping after chemo the fatigue subsides. Will be thinking of you two on Thursday. Hugs. Nancy

Loving my husband from afar.

Re: Ben's Chemo started October 30th, 2010 Gemzar and Cisplatin

Hi Tom,

Good to hear from you! Sounds like you and Ben had a great time in Europe! I went to Paris for a week when I was 13 on a school trip. Great city and so much to see and do, especially for a 13 year old!! And yes you are so right in that one night there is not enough. Did you and Ben go up the Eiffel Tower?

Pity that we weren't able to meet up in Edinburgh this time. Hopefully if you come back in July or any other time then things will be a lot less hectic work wise for you and then we can meet up. My offer of being your tour guide and chaffuer for a scenic drive through my country always stands, so I hope you like fish 'n chips down by the harbour!!

Yes the nervousness regarding the scans and the results is something that we all can relate to. My fingers are crossed for the best possible outcome for Ben's results. Please let us know how they go and I am sending you a ton of my best and positive thoughts.

My best wishes to you and Ben,

Gavin

PS - I'll start you on the fish 'n chips, then we'll go for the Haggis!!!

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.