Update on Ben
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Hi Tom and Ben,
Wow, another 3 months!! I’m sorry to hear about the lymphoma, but hopefully it will be manageable. How unfair for poor Ben. I always look forward to your posts and hold my breath every time I go to read them. Not the best news this time, but hopefully cureable. My prayers to both of you and please keep us updated.
Love,
-PamWell, if it isn’t Tom & Ben peeking around the corner! Good to see you guys as always. Tom, my daughters ex BF is 51 and has Lymphoma Non Hodgkins and is in his 7th year and doing quite well. I am sure no one wants a double whammy, yeesh, but there are many treatments for Lymphoma today. Tell Ben I said you signed up for 1 Cancer but 2??? Who the heck does he think he is anyway? All kidding aside, wish I could take both away from Ben. You are still my dynamic duo and this new “bump” just shows how strong you are as a team. Hoping for some better news next posting and PULEASE don’t wait 3 months! Sending you all my best juju ever.
Another 3 months has flown by and here I am. Interesting news with this post.
Recap – my partner Ben was diagnosed with Stage IV CC in August 2010….a long journey (not surprising), but he’s still hanging in there (I have a lot of history if you search on my name for those interested in details). Ben started his 3rd round of the standard protocol of Gemcitibine and Cisplatin in October. Even now as I type this nobody would look at Ben and think he was sick. While he is tired a lot, he still seems to be managing on a day to day basis.
After visiting MD Anderson in December, they recommended dropping the Cisplatin and focusing on GEM (which they called the “workhorse”) to help with quality of life. The combination was really wearing Ben out – and with the Cisplatin it would mean seven hours of Chemo and fluids, fluids for two days afterwards along with shots to increase his white blood counts. So just doing GEM would free him up a bit more and not be so debilitating.
Shortly after Christmas Ben started feeling pain in his shoulder and arm – he thought he had pulled a muscle, etc. Fast forward after more tests, chiropractor (Ben’s idea – clearly not the oncologist’s,
bone scans, spinal biopsy and another trip to MD Anderson.Of course my first thought was “mets to the spine” which I know can happen. The biopsy seemed to indicate something but not Cholangio.
So – off to MD Anderson last week, (and now this week). Long story short – it turns out Ben also has Lymphoma! Wow – two cancers for the price of one!
Unfortunately I couldn’t make the trip this week – but Ben’s brother met him in Houston and I was able to Facetime (video conference) during the doctors visits – which was awesome. T
The Lymphoma doctor (Luis Fayad – amazing) was quite amazed. He said “you know – most people don’t live so long with CC, so maybe you have had both cancers all along – and what they were seeing outside your liver was lymphoma and not CC”. Huh.
Anyway – not conclusive; they are doing more tests this week to determine the exact type of Lymphoma – they believe it’s agressive, but the doctor said he thinks they can treat it. Lymphoma has a high success rate – and our CC Oncologist at MD said he is one of the best in the business. He said “when I’m done with you, you will need to figure out how to deal with your CC, but hopefully it’s contained to your liver”.
So – there you have it – a whole quarter boiled down to a few rambling paragraphs. Not too much to report up until today. (besides the usual cancer drama – but that’s not very exciting anymore).
More to come – I’ll be back soon with an update to see how it turns out. We meet with the doctor again on Thursday (me via Facetime). All my best to all of you.
tom
I’m with you on the Teddy Christmas feast Lainy!!! Apart from the oysters that is, don’t like the sound of them. But the calamari……..yowza! And I am sure that you will show T’s grand daughter how to cook that feast to perfection!
Gavin, since it is almost Christmas, forget the turkey leg, I will have to pull out the BIG guns and do a Teddy Christmas…..Calamari Marinara and Octopus salad, clams and oysters!!! One of his Granddaughters who is 24 just asked me for his recipes.
Tom.. considering the fact that your reading of our responses will be time delayed (three months) I have decided to continue to e-mail you personally.
Hugs,
MarionYour noodle and sauce threats ain’t worked so far Lainy…… time to perhaps try a massive turkey leg me thinks! After all, that is bigger and it is Christmas after all!
Hi Tom,
Thanks for coming by again and letting us know about Ben. And yay, great news you have to share about him as well. So chuffed to hear that he is doing so well, and of course, long may that continue! I hope that you and Ben will have a great Christmas and that you enjoy going home as well for it! First time in 3 years, I am sure that you will enjoy it!
My best wishes to you and Ben,
Gavin
Tom me Ben,
Wonderful news…..makes me so happy for both of you….I’m Italian so I can’t waste a noodle for not updating………we love our pasta.
Hugs, LisaHi Tom and Ben! So good to see your smiling face again. No wet noodles this time. What if I offered you a Pasta dinner instead if you posted more. Just kidding, we will take what we can get and your post is a great one indeed. You and your little Miracle have a nice trip and a wonderful Christmas with your family. We are getting so many wonderful Christmas posts I just hope they keep coming. I also love the way you write. Just travel safely and have a great time!
Hi Tom,
I can’t believe it has been 3 months since you have written. I’m sure Lainy will be after you! Haha. It makes me so mad when insurance companies think they know more about what chemos you can and can’t have than doctors. So frustrating. I am so happy Ben is doing well. That is wonderful news! I always love to hear when people do better than expected and shock the doctors.Way to go, Ben! Best wishes to you both and have a terrific time in Iowa.
Hugs and Happy Holidays!
-PamSpeaking 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
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
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!!
Thanks everyone for your support…and I completely expected the big wet noodle lashing from Lainy! I will TRY to visit more often!
tom
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
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