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I’m back – AGAIN! It’s so incredible to be giving another update in this GOOD NEWS section! I’m still lurking around out here but haven’t been posting much I’ve been so busy!
Just a little reminder – Ben was diagnosed last August 30th with Stage IV Intrahepatic CC – with mets to the lymph nodes and Omentum, which meant he was inoperable. He started chemotherapy in November and finished all eight of his Gem/Cis cycles in April. Mid-way through Chemotherapy treatments a scan was performed and his tumors had shrunk by about 25%.
Six weeks after his chemo ended – he got another scan and the primary tumor in his liver could not be detected!!! So, that’s where we left things at the end of April – HURRAY!!!So, moving right along – we pretty much lived our normal lives over the next 7 weeks until it was time for a new scan….which of course we all know those and the dread that leads up to the waiting of the results.
Ben had his new scan on June 27th and we received the results yesterday – July 1st and the radiologist report still showed NO signs of the cancer. WOW!!!! Are you kidding me? Obviously we were both elated since we all know what can happen with this cancer.
Our oncologist said he would now probably wait 2-3 more months before he does another scan but he will see Ben in a month and decide then. So – now it looks like we are going to have a “chemo-free” summer! Ben still feels really good and normal so we are going to enjoy life as best we can until the next dreaded scan.
So, at this point almost 11 months since diagnosis with inoperable, terminal CC – and given 6-18 months to live, Ben has survived all of his chemo treatments and right now is living proof that it doesn’t all have to go down hill so quickly. We both realize that it is likely to return and the doctor is obviously not saying he is “cured”. But at least for now both of us feel he is in a very different place right now then we were expecting.
NO pain, NO side effects, NO cancer (at least for now)! We never would have believed it!!! So, there is hope to everyone I think…..who knows maybe a cure will be found while his is stabilized.
Thank you to this amazing board for the information and support you provide. It’s invaluable and I continue to think of everyone often. I do find it difficult to keep up out here given my schedule – but anyone is free to email me using the email “click” at the left for anything.
Tom
p.s. – Gavin – I will send you an email separately…since Ben had such a good outcome I am still planning on coming to Europe on July 5th and will be in Edinburgh on July 10th. Maybe we can get together depending on our schedules and your Mum’s health.
I’m taking advantage of the three day weekend to get caught up on some much needed “homework” including updating the CC board (I still lurk out here once in a while).
Ben had his one month checkup at the Oncologist following the good news he received at the end of April (tumor basically shrunk and mostly disappeared).
The doctors appointment went well as we expected. Ben has pretty much returned to all normal activities (although he still can’t get motivated for the gym, but that’s just usual procastination). Ben will get a new MRI scan of his liver on July 1st, so we have 5 more weeks of NO doctors, NO chemo and NO hospitals!!!
So the GOOD NEWS is there is nothing new to report – and I’ll take that!
tom
p.s. – Gavin, as of now it does look like I will be back in Edinburgh in July (July 8th), I will keep you posted but definitely plan to seek you out and meet you!
Hello Aimee – welcome from another floridian (we live in Fort Lauderdale). My partner, Ben was diagnosed in August 2010 with intrahepatic 7.5cm tumor in the liver with mets to the surrounding lymph nodes and the Omentum (lining of the stomach).
In November he started the recognized standard protocol of Gemzar/Cisplatin (which sounds like you will be on). I have detailed accounts of his journey so far (mostly in the Chemotherapy section).
So far he has responded very positively to the chemo (and as of the end of April they could see “little if any” remaining of the primary tumor – so right now we are happy and amazed (we are waiting to rescan in another month).
Our original diagnosis was from Mayo Clinic in Rochester, MN – but Ben is being treated by a local oncologist in Fort Lauderdale (Dr. David Lessen).
Good luck with your battle – keep a positive attitude and keep on fighting!
tom
Good for you Jukka, if that’s what you want, go for it!! My Ben went out and bought a Porsche after his diagnosis (I thought he was crazy) but he has loved every minute of it (and so have I).
As for your chemo recommendation, Ben just finished what is known as the standard protocol for CC, a combination of Cisplatin and Gemcitabine and his tumors are almost gone (you can read his history in the chemotherapy section of the board). It looks like GEMOX is a combination of Gemcitabine and oxyplatin so sounds like it’s close, I know others have been on that combination but don’t know what the difference is…
Tom
Thanks everyone for your support, Margaret great news on your Tom as well and Kathy I am hoping for the best for your Dad.
Gavin regarding your question on Cyberknife, since Ben is at stage iv my understanding is the only protocol is really systemic treatment with chemotherapy, etc. Since they don’t know where else the cancer is lurking once it’s metastasized so they won’t just treat specific tumors. If anyone has heard of other treatments at stage iv I would be very interested.
Tom
Hey Lainy – since Ben’s original diagnosis was at Stage IV with metastis to from the Liver to the omentum (lining of the stomach), both MD Anderson and Mayo Clinic said he isn’t a candidate for surgery. So, for now – just the shrinkage to almost “non-existent” is the best news we could have hoped for…now I guess it’s just a waiting game.
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
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
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
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
Thanks for all the updates Shari, glad things are getting back to “normal” for you. Hang in there – your almost done!!!
tom
Shari,
Sorry to hear of your dads passing. You have a great attitude and perspective…keep up your positivity it only adds to your strength. Good luck with round 7!
Tom
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
Hang in there Shari! Sounds like Ben is one cycle ahead of you and you can sure tell the difference on his energy level from when we started. He just has one more cycle to go for now….but all in all he still feels pretty good considering what he’s been through! Think positive thoughts and think about all that camping and the sun!
tom
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
