Paella, here, asking a big favor

3/11/17

 

Hello to all  –  

 

First of all and for all stem cell transplantees – keep on keeping on!  At 8 months post SCT, I’m doing really well…occasionally overdoing but feeling good and strong.  But husband Mac’s pancreatic cancer is something I’d like to bring up again even though this is the lymphoma forum.  Why?  Because we’re seriously entering the Second Opinion search and I think you all could be of help to a potentially amazing degree. 

 

Here’s the situation from the latest scan (6 days ago), post-9 cycles of Folfirinox, showing some really good news and some sideways news:

GOOD NEWS:

The chemo has been very effective – allowing no new spread of the cancer and, in fact, achieving a shrinkage virtually everywhere – in some cases up to a 75% decrease in mets.  Still no organ involvement – metastasis is limited to lymph nodes near and distant. 

THE SIDEWAYS NEWS:

Because the “distant” lymph nodes up through chest toward the neck ALSO have reacted well to this chemo, we now know for sure that (as suspected) it is pancreatic cancer mets.  Had those distant nodes NOT reacted to the chemo, that would have actually been better news because what’s wrong with them might have been curable in some other way.   However, because his pancan is unresectable, there is, apparently, nothing out there than the following:   

BOTTOM LINE:

Mac will continue with this aggressive chemo (which he’s still handling very well, working out every day, good appetite, feeling well, etc).  These aggressive rounds of chemo will continue to be given every 2 weeks for as long as he and his body can stand it.  At that point, they will put him on a less-aggressive treatment meant to keep the stabilized cancer from re-growing.  And that will also be an every 2 week adventure…for  the rest of his life…until a cure comes along.   

 

We are, however (as mentioned earlier), starting a full-frontal second-opinion effort.  Part of the problem with his version of pancan is that it is so rare that there are extremely limited studies, trials, and the like.  Our goal is to, somehow, find THE one or maybe TWO people in the world who have worked to a greater extent on the Acinar type.  Google is wonderful but you have to know somebody who knows somebody who knows somebody…needle in a haystack but phone calls with balls can go a long way.  Plus there are companies now that can help with second opinions, finding THE one person, or getting into an obscure late-phase trial, etc. 

 

You don’t have to know a lot about pancan, just ask your Onco if he knows anyone that HE/SHE would immediately see if HE/SHE were to be diagnosed with Acinar Cell Carcinoma of the Pancreas.  Or if you know anyone who’s experienced ANY kind of pancreatic miracle to call me.  I need the doctor’s name, the institution and hopefully the name of his or her primary nurse!  (I am only very generally conversant on the subject and definitely find the scholarly/medical-ese tough to plow through…things like molecular specifics leave me cross-eyed.)  Plus I don’t think there’s enough biopsy results to send everywhere; most was sent to Cedars Sinai) but we’ll get another biopsy done if necessary.  

 

Details:  72 year old male, never smoked, being treated at City of Hope, diagnosed with Acinar Cell Carcinoma of the Pancreas (confirmed by Cedar Sinai), no familial history, no weight loss after 9 successful cycles of Folfirinox, active, good performance status, no organs affected only lymph nodes both local and distant.  You can reply here or call me directly (my real nickname is MB) at 909-337-4325.  I can get Mac’s scans, doctor’s notes, etc. to whoever sounds promising.        

 

Bottom line is that, while every 2 weeks for “his forever” doesn’t sound like the kind of life we expected, it is LIVING.  And, let’s face it, the news could have been much much worse…in fact there are tens of thousands of undertoads out there (yes, “undertoads” as in The World According to Garp) that would have meant worse news. 

 

So, if you could just ask your Onco, we might get some names and that would be a terrific algorithm to act upon.  So thanks in advance for any help you can give us. 

 

Love and health to you all – Mac and Paella

 

Comments

  • po18guy
    po18guy Member Posts: 1,347 Member
    Pop on over to www

    Pop on over to www.cancerforums.net and post a thread up in the pancan forum. Someone there might just have the info that you seek.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,767 Member
    po18guy said:

    Pop on over to www

    Pop on over to www.cancerforums.net and post a thread up in the pancan forum. Someone there might just have the info that you seek.

    I think about you two pretty

    I think about you two pretty regularly, Paella.  I'm glad you are doing very well and Mac is doing pretty well, holding steady, which is better than might have been expected 4 months ago.

    The SCT holding is what a politician might call "huuge !  This is bigg ! I mean really, really bigg !  Your assessment of Mac sounds about perfect.  I hope your request for breakthrough information comes soon,

    max

  • lindary
    lindary Member Posts: 711 Member
    edited March 2017 #4
    good luck

    Paella, It doesn't seem fair that just as you get over the SCT you are then caregiver for your husband fighting a different cancer. You do seem to handling it all very well. Your husband is very lucky in many ways. One is that you already have an idea of navigating the medical circus. I hope you find something to help your husband.