Peritoneal mets, HIPEC, EPIC

[CM35]

I have an ongoing problem with peritoneal mets... At dx, I had an ovarian met, that was resected a little over a year ago, along with my primary tumor and liver. In December, I had a recurrence in my pelvis, a peritoneal deposit. I had that spot resected, and started on chemo 4 weeks post op. My adjuvant chemo has not been optimal, my counts dropped (neutrophils) after the first round, and we could not get them to recover. I ended up having a 5 week break between rounds one and two. I went in a week and a half ago for round 3, and surprise, surprise... CEA is elevated. I had a CT scan the next day that confirmed I have a new spot in my pelvis. According to my oncologist, this spot should be resectable. When I had surgery in December, I really wanted HIPEC (my surgeon at my local facility does HIPEC) but it was decided to take a less aggressive approach and just resect the tumor. This was more the surgeons decision than mine. It was the holidays, and I wasn't willing to run around to find another surgeon. I also have been treated at MSK, but they do not offer HIPEC (outside the setting of a trial.) So I had surgery at home.

Now that this new spot has appeared, I am not willing to take a less aggressive approach. If I can help it, of course. I imagine, because I just had surgery for this exact same problem 3 months ago, I may have a problem finding a surgeon. It seems to me however, as these tumors keep showing up in the same area, that my problem may be regional. In my own lay person's opinion. Everything else remains clear. I am still waiting for my local surgeon to even review my new scan, so I am not optimistic that he is going to want to take this on. I have contacted a surgeon in NYC who does HIPEC; he is going to review my scan and medical records this week and let me know if its worthwhile to travel there for a consultation. I will also be visiting my oncologist at MSK, just to see what she has to offer. I want to discuss EPIC (MSK's version of intraperitoneal chemo,) but to be honest I am a little skeptical. From my own nosing around, I have not been able to find any data on it; I have not even been able to find any anecdotal data where it was successful. Has anyone here had EPIC, and what has your experience been with it? Also, for those who have had HIPEC, would you be willing to share your surgeon's name, and your experience. I am obviously going to use the "search" function, but it would be nice to hear from those who have had the procedure and are still around to tell about it!

I am feeling pretty discouraged with this latest recurrence. It would seem that systemic chemo doesn't do a lot for my peritoneal mets. I feel like I am supposed to be in "fight mode," but I am having a hard time generating the energy. Mentally and emotionally, I am feeling tired and beat up. Physically, I feel like the chemo is beating me up more than it used to as well. It just sucks...

Thanks in advance for any advice. I read here daily, but seems like I don't have much to offer... I hope a lot of the familiar names that I don't see much of lately, are only absent because they are out living a healthy and busy life...

Colleen

[Julie YW]

Just sent you a fb message. I'm here to help anyway I can. We are in similar boats, and it's a damn crappy boat.

[Steph20021]

Hi Colleen,
The surgical oncologist I see is in Toronto at Mt Sinai, so Im not sure how helpful I can be but his name is Dr. Anand Govindarajan and I believe he does HIPEC with Dr Andrea McCart.
My disease is currently in my one remaining ovary and in some pelvic tissue and I have lymph nodes in my mesenteric root with mild stranding. I see him tomorrow to find out what this means for me in terms of HIPEC. Luckily my ct appears that things are stable but who knows for how long. My ghost liver met appears gone. However before with one small liver met he wasnt ruling me out, but if there had been more he would have. But i havent had a Pet since oct. And my case will have to go before the tumour board at Mt Sinai in any event so surgery even if possible for me will be months out Im sure because Im still on folfiri with avastin currently. PM me if theres anything I can offer or do to help.
Steph

[hart2hart]

Hi My Friend -

Go to the Post "Surgical Consult for HIPEC & Liver Resection Next Week" by Rhealiza
on July 10, 2013 ---- I have heard great things about this Dr. Colleen!

We LOVE YOU Colleen!! Keep being Positive and Aggressive!! xoxo



Julie and Pete
Stamford, CT

[TheLadySkye]

If you're able to travel to the Buffalo area, Roswell Park Cancer Institute offers HIPEC. While not part of my treatment plan, I do remember seeing information on it during my visits to the hospital. A brief search popped up this article verifying that it is used there.

https://www.roswellpark.org/article/qa- ... emotherapy

I hope you will be able to take the approach to your treatment that you want.

[CM35]

Go to the Post "Surgical Consult for HIPEC & Liver Resection Next Week" by Rhealiza
on July 10, 2013 ---- I have heard great things about this Dr. Colleen!

Thank you everyone for the feedback... The surgeon who did Rhea's surgery in NY is the one I have already contacted. I too have heard only great things about him. Hopefully, he has something to offer me.

I will look into Roswell Park. Interestingly enough, I think that is where my local surgeon did some of his training. In the end, even if surgery isn't a viable option, it won't be for not trying.

Colleen

[Stanfordmom]

Colleen,

my heart broke for your news. Wish you can get a great treatment plan, and finally kick the Cancer out of your body.

Anyhow, In terms of HIPEC Drs, have you consider DR. Sugarbaker himself? Also on the west coast, Dr. Andrew Lowy from UC Sean Diego is also famous for HIPEC.

best wishes for your upcoming treatment. Holding you close in my thoughts and prayers.

Sha

[arizona mom]

((Colleen))

That just SUCKS!!! I am so sorry you have to deal with this crap!! You have every right to feel beaten down for a day or two, but then you need to get back up and start fighting again. The good thing is your oncologist thinks this thing is resectable. You are in good hands and it is fantastic that you keep looking for the best doctors to meet your needs.

I don't know much about HIPEC, but I remember seeing Dr. Sugarbaker(?) from Washington DC's name come up here quite a bit. One of the names I filed in the back of my mind for future reference, just in case.

I'll be thinking about you.
Lara

[rp1954]

Which surgery/treatment months have you had cimetidine ? Just some after the first surgery ?

[CM35]

Thank you, Sha and Lara... Your words mean a lot.

Which surgery/treatment months have you had cimetidine ? Just some after the first surgery ?

I have been taking cimetidine since before my surgery over a year ago...

[vilca11]

Dear Colleen,

My heart goes out to you, the battle with cancer is an incredibly tiring thing, to say the least. Sometimes we all lose our energy that is so much needed to fight it.... It is ok, I know you will pull all your remaining strength back again one day, I am sure... Right now it is just this uncertainty about the treatment... When you have a plan, all the energy will come back. The disease is contained to peritoneum, which is a good news, it is local. So, you will deal with this locality and take a deep breath - we have to handle one step at a time at stage 4, dealing with break outs. I look at it as a marathon, multi years one, need to save energy, need to do deep breathing and stage the efforts well... You have years ahead to struggle with it - do not give up!

Btw, rp1954, I did take cimetidine too, did not help my spreads either... I guess, it depends on the personal body and cancer chemistry.... Anyway, not a panacea... nothing is, though....
Hugs, vilca

[rp1954]

Thanks, Vilca and Colleen. Yes, fighting a spread of circuating cell clusters is about remaining/stimulated immune function, biotype est'd from blood levels or tissue, and continuity of effective tx levels too. In general, it would be helpful if more people had peak CEA and CA19-9 blood values to compare from before each surgery. Longitudinal posts with WBC, CEA, CA19-9, ESR would be most useful; LDH, hsCRP, CA72-4, CSLEX1, d-dimer and fibrinogen could be useful baseline or longitudinal data to all as a more realistic path toward personalization of treatments in general, too.

The e-selectin (CSLEX1 or KM93) and CA19-9 tissue markers are the best, considered closest to quantitative for long term cimetidine tx with chemo, but dr, pathologist and insurance resistance factors can be too much for the average patient or newbie.

Initial dx-->Pre-surgical draw after immune neoadjuvants.
WBC 8-->15+, CEA 12-->20, CA19-9 ?-->34 (hi'r than stg 3 avg); ~2.5 cm peritoneal implant and mesenteric fat infiltrates, necrosed.
1st baseline values on treatment, post surgical,
WBC 6-9, CEA - 2.65, CA19-9 - 19; high WBC reflect dose and immune extract tests
peak after dose reduction, before 2nd surgery
WBC 5-9, CEA - 14, CA19-9 63-->24 after enhanced dosing.
2nd surgery, tissue markers: e-selectin(CSLEX1) +, CA19-9 +
2nd baseline on higher dose treatments, ~1 yr
WBC avg ~5, CEA 2.25, CA19-9 - 22