Chemo after HIPEC

[Kim B.]

Hello,

I'm new here. I'll start off by giving a short synopsis of my cancer journey. Last year while visiting family in the US, I had to be rushed to the ER because of severe anemia, I could hardly walk. After a blood transfusion and a series of tests, the doctors found a 4 cm. tumor in my right colon after performing a colonoscopy. I had emergency surgery in Charlottte, N.C at the Levine hospital. Unfortunately, during surgery, another tumor, a single small met, was also found on my Omentum. All lymph nodes were clear and remain clear to this date. I then flew to Germany for 10 rounds of chemo (although I'm from Charlotte originally, I've lived in the Netherlands and Germany for the past 18 yrs). I pretty much sailed through chemo with little to no side effects. Unfortunately, the PET/CT scan in April revealed two new hot spots to my peritoneum in April, 2014. I wasn't able to have exploratory surgery until June and the surgeons in Germany were unable to find any cancer in my peritoneum even after taking a third look during the procedure. Not feeling entirely comfortable with the results I scheduled a second exploratory surgery with the option of HIPEC in Eindhoven, the Netherlands with Dr. de Hingh( an excellent surgeon). Dr.de Hingh performed a complete Cytoreduction followed by HIPEC on July the 4th. He removed my entire Omentum, both ovaries, two tumors about 4 cm. in the peritoneum and some small cancer cells on my colon. My PCI score was around 10. He also removed another section of colon. I'm 5 weeks out of surgery and I feel great. I made a very speedy recovery and was released from the hospital within 7 days with little to no complications.

However, I've now reached an impasse with my new Oncologist. I strongly feel that I need to be on follow up chemo or at least some maintenance chemo but she doesn't agree. Her argument is that I may become resistant to the chemo, but I find this highly implausible after only having 10 rounds last November. I think she is taking an enormous risk. My question is this: is chemo after HIPEC considered standard protocol for most Oncologists? Thank you!

[Awreed]

I had 6 months of 2nd line chemo after HIPEC, 6 month scan after being off back in liver lung spleen. I think I should have been on lower dose maintenance not stopping after 6 mos. as soon as I go off chemo it comes back.

[Kim B.]

Thank you so much for your response! I would think that post operative chemo after HIPEC Is a package deal. HIPEC treats the cancer externally and chemo treats the cancer in the blood stream. It's a dilemma. I've talked with my new Oncologist in Eindhoven,NL three times and she won't budge. I think her arguments are weak and illogical. I had chemo more than a year ago and it was cut short, not because of the side-effects but because the Oncologist thought I didn't need it. She was obviously wrong. I just don't want to take the risk. I'm looking once again, at clinics in Germany, maybe in Heidelberg.

[Kim B.]

Also, Alwreed, it's encouraging to connect with fellow Stage IV colon cancer survivors with spread to the peritoneum. I really hate to read the information on the internet but on the other hand, you have to stay ahead of the game and do all the research you can. If I had remained passive, I would have been in a quite a bind right now. In June, I had Laparoscopy in Krefeld, Germany. The surgeon said he looked three times and could not find any cancer! A month later, I had a second Laparoscopy in Eindhoven, the Netherlands which revealed two tumors about 4 cm, in my peritoneum. You have to follow your gut instinct and remain pro-active.

[Awreed]

Follow your gut... No pun intended!!!
Yes, I'm staying proactive... I'm having the things ablated in my spleen and liver and maybe lung(that might not e cancer). Then I'm going on ADAPT. I swim 2 miles 4x a week and Hot Yoga 5x a week. I'm doing a 150mile bike ride 2 weeks after my ablations. DON'T let cancer slow you down. That's how I plan on beating it!!

[Kim B.]

Hot Yoga is awesome! In Germany, the doctors think that heat and sweating kill cancer cells, so I would think that Hot Yoga is probably one of the best things you can do to stay healthy. I'm just 5 weeks out of HIPEC but as soon as I'm fully recovered, and I'm just about there, I plan to hit the gym. Alweed, it sounds like you are doing all the right things! Great!

[Frenchie's Wife]

My doc said Hipec was a form of chemo, so no need to do follow up chemo. 11 months later the cancer came back with a vengeance . Insist on chemo if you have that option.

[Kim B.]

Frenchie, thank you,that's exactly what my Oncologist says as well but from what I understand HIPEC just handles the peritoneal area and only externally. The chemo that's administered during HIPEC doesn't go into your bloodstream and my feeling is that there might be some rogue cancer cells there as well. I tolerated the first rounds of chemo very well, made a very quick recovery from HIPEC and am willing to accept the risks involved with more chemo but my Oncologist won't budge. Personally, I think a patient should also have some say so in their course of treatment but this is Holland.

Best of luck to you!

[hart2hart]

My vote if for CHEMO ---- Wait and SEE I just plain don't agree with.

Go search out another ONC for another opinion. Nurses at Hospitals know the best doctors.
Al least ask. Also you could ask family, friends or anyone you know of that might have or has the Big C.

Please go for ther chemo ---- as Frenchie said it came back with a vengeance......

Make those calls Monday, you'll be glad you did! Keep being POSITIVE!



Julie
Stamford, CT

[Kim B.]

Thank you, Julie, for your input. I'm getting on the phone Monday!

[debb]

Hi,
I had HIPEC almost 18 months after completing FOLFOX for Stage 3C. Then I had a met to an ovary, which burst before removal. Despite a negative pathology for the fluid from the burst ovary, I pursued HIPEC...because I feared spread in the peritoneal cavity. HIPEC went well, omentum removed and no cancer identified. I opted for no chemo after HIPEC, with the advice of both my surgeon and oncologist.

Regular IV chemo does not cross into the peritoneal cavity, which is why HIPEC is performed...to get at that area. After HIPEC, I had no cancer (that was visible on a scan). So I didn't have chemo because I didn't want to go through the devastating side effects to be treating a possible nothing. Plus, I had had FOLFOX and had the met to the ovary...so that showed me chemo won't prevent spread..for me.

I've had 2 more recurrences. The one in my lung was probably already there in the beginning, and didn't get measurable to be noticed on scans until later. So I had VATS, and no chemo after. I just had a small cancerous growth removed from near my scar on my abdomen. Again, removed and no chemo.

My doc (at MSKCC) says that chemo is one of the weapons in our arsenal, and why use this bullet now, that chemo now would be like using a machine gun to kill a fly. After each one of my surgeries, I have scans which show NED...no evidence of disease. But I think it really means no evidence of measurable disease, for me. It's very nerve-wracking because your gut instinct is to try to throw everything you have at this disease, but sometimes you just have to catch your breath and think big picture. For you, it seems that your cancer has been contained in the peritoneal cavity, and you've done right by yourself to pursue HIPEC. Youve done everything you can to treat your disease as it presented itself in your body. I'm glad you are recovering well. Get another doctor's opinion, for sure, about getting a course of chemo. But sometimes doing nothing may be the right thing.

It took some time for me to accept that this was the best course for me. But I was freaking out as much as you are. I still freak out. I want to live. But living on chemo for me is not living. Good luck in whatever you choose. I just wanted to tell you about me, because I was in your shoes not too long ago. Good luck!

[Kim B.]

Thank you Debb, for taking the time to reply. Our cancer journey does sound the same in many ways. It's hard sometimes to know if you are making the right choices. I'm not sure that even the Oncologists know for certain if they are leading us down the right path and yes, it's frightening. When I had HIPEC, the surgeon did find cancer in my omentum and ovaries. That's why I think I might need more chemo but like you said, as in your case as well, chemo didn't seem to help so much the first time. Difficult.

Wishing you the best!

[Rheaeliza]

I had HIPEC along with hysterectomy, colon resection, gallbladder, and appendix out in August 2013. I had a difficult recover, needed a temporary illeostomy, abscess clean out surgery, a liver resection in November, ostomy reversal, infection, fistula, another abscess clean out surgery. Oy. We opted for no more chemo. I had 15 rounds prior, various combos of xeloda, oxali, irrinotecan, and avastin. My oncologists thinking was that a) chemo was still working for me when we stopped before all my surgeries (pathology showed my liver rumors were dead) so we will still have those drugs as options for future treatment if I get a reoccurrence, and b) my scans have all been NED since November. Also CEA is a good marker for me so we will monitor that closely. I'm happy with my choice. I was able to just let my body heal from surgeries. Today I feel great. Everyone's case is so different. My oncologist and surgeon agreed on this course and I trust them both. They have gotten me this far, almost two years since diagnoses of stage IVb and one year since I woke up cancer free after liver resection.

[SkiFletch]

I had no chemo following my HIPEC. Still here 4 years after that with no recurrence... Remember, systemic chemo is not very good at reaching peritoneal metastases, therefore it's use is dubious at best, resistance or no.

[Kim B.]

Thanks Rhealiza and SkiFletch for your input and congratulations to you both on reaching NED status! I've decided to wait until my next CT scan in October to start chemo if necessary. I'm still frightened and not sure if this is the right thing to do. I think the worse part of Stage IV is the perpetual fear and wondering if you are taking the right course of action. It helps to know that there are others facing the same dilemmas and it's always encouraging to connect with people who are doing well in spite of having advanced stage colon cancer. All the best to you both!