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Hello everyone, I thought I better not go another three months before an update – thus incurring the wrath of the wet noodle from Lainy. I guess 6 weeks isn’t so bad (for me).
Actually there isn’t too much to report (luckily). As I said in my last post – Ben was diagnosed with a very agressive form of Lymphoma – so the chemo treatment has now changed to address that (he has a curable form; “type B”). The standard protocol is six cycles (one day of chemo, the next week a “lumbar puncture” of chemo in his spine, then week three off). Ben has completed two full cycles of the chemo – and this is the start of cycle 3.
Ben continues to tolerate chemotherapy pretty well – he rarely gets nausea or sick…just really tired. At this point we are still hoping that the CC cancer is just sitting there bored…..our fear is that it will start growing again since his current chemo regimen isn’t known to fight CC – so it’s kind of a “wait and see” game, but so far it’s not showing any signs.
Unfortunately, our dog of 15 years (our beloved dalmation named Zack) died this week – definitely a mental setback for both of us….he has been Ben’s companion through this journey day in and day out – and since Ben is home alone so much I’m a little worried how it will effect him – so will try to keep him occupied with our friends.
Anyway – just wanted to check in – as I said, nothing too dramatic to discuss which of course on this board is GOOD NEWS!
Take care everyone.
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
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
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
Thanks everyone for your support…and I completely expected the big wet noodle lashing from Lainy! I will TRY to visit more often!
tom
Hello MMML,
My partner Ben has gone through two full protocols – 8 cycles in Dec-April 2011 and just recently Jan through June of 2012) of Gemzar/Cisplatin. He had very few side effects through both regimens. Not everyone experiences hair loss. Ben did experience some hair loss on the first regimen a after the first two rounds of chemo….eventually he shaved his head as it became more noticeable (but as a man with short hair I think that’s an easier decision).
Unlike other chemos – from what I know with GEM/CIS not everyone experiences hair loss – and it doesn’t all just fall out at once if they do; so I would recommend just hang in there until you see what happens.
(if you care to look through some of my historical posts I did post more details on the chemo – but to save you time – it was mostly a long day, and he felt tired a lot of the time throughout chemo but still able to function).
tom
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
That’s frustrating….. turns out caregivers aren’t perfect (please see me for a list of examples). Meanwhile, a breakfast, shopping, naps and dinner don’t sound too bad, sounds like you turned lemons into lemonade. And we all need more lemonade.
Shlamoney,
My parter Ben was diagnosed 19 months ago with ICC he had about a 7.5cm tumor in his liver with metastesis to the surrounding lymph nodes and the lining of the stomach. His original symptoms were a full stomach and some vomiting, and he started to turn yellow (because the tumor was blocking his bile duct). In some of my original posts I was fairly detailed about his symptoms, treatments, etc. so if you do a search (advanced search) under my user name you can see all my posts. Ben finished his first round of GEM/CIS last April and is currently just over halfway through the same protocol since he seems to respond to it fairly well.
Let us know if you need anything.
tom
Hi Trevor,
I received your email earlier today and thought I would reply here for future reference. I do believe my Ben’s case is similar to yours – stage IV with mets to the surrounding lymph nodes and Omentum. He was diagnosed on 8/30/2010, underwent chemo from November 2010 until April 1st, 2011. (Gem/Cis standard protocol – made it through all 8 cycles with very little side effects).
Some additional growth in October caused blockage (and some surgery) along with some additional pain in December. Ben restarted the same Gem/CIS protocol in January. In the beginning he had some nausea (which he hadn’t had before), but after the first couple of rounds that’s no longer an issue. At this point he is halfway through the 8 cycle regimen. He definitely gets fatigued but so far is exhibiting no other side effects (hair loss isn’t as bad as last time), although chemo brain is lurking around.
As for what to do after the primary protocols become ineffective, it does seem that it’s still kind of a guessing game. Ben and I were at MD Anderson last week and they stated that once the standard protocol is done – they potentially recommend oral Xeoleda or possibly Tarceva. Apparently MD tracks CC closely with pancreatic cancer – they told us that they are finding that there are certain people with a certain genetic mutation that seem to respond well to Tarceva (at least for pancreatic) so they were exploring that for CC. They are going to do some tests on Ben’s tumor to see if it’s favorable in that direction – however, they recommended he continues with the GEM/CIS since he is responding so well – and Tarceva was just an option for when this regimen is over.
That’s all I have to add for now, feel free to email or reply with any additional questions (email is sometimes faster because I don’t come out here everyday…or sometimes weeks – but I will definitely respond to email).
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)!
Jim,
My partner and I (Ben) live in South Florida – so I don’t consider it “regional”, however we have the same challenge with local radiologists here. Last year we had Ben’s (post chemo) scans sent to both Mayo Clinic (Rochester) where we had gone for the original diagnosis and MD Anderson (Houston) – for 2nd opinion. Both of them saw things on the local radiology scans that the local radiologists didn’t see.
Ben is halfway through his current chemo regimen (documented in my posts) and we went back to MD Anderson for their own scans. While they confirmed that everything is stable – they saw a blood clot in his thigh on their scans and on the local scans that nobody here caught!!!!
Anyway – I know second opinions and scans aren’t always an option but finding the right people who know CC is certainly important.
tom
Hampton and Tiff – I just saw this. We didn’t see Dr. Javle, but I wish I had seen this first I would have been on the lookout. The Dr. we meet with is Rachna Schroff – she seems quite knowledgeable and helpful as well. I will say I don’t have any doctors emails – so it’s amazing if Dr. Javle gives his out – AND he answers them!
tom
(p.s. – Continental has direct flights right to ICH which is who we fly) – easy flight with no connections!
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
