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Peritoneal Recurrance Has anyone had intraperitoneal heated chemotherapy?

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I was Stage 1C with positive washings. 42 lymph nodes negative. CA 125 was 16 after surgery (we never got presurgical CA125) During Carbo/taxol six cycles it went down to 5.4. After completing treatment it went up to 7, 8, 9, down to 7 again, then 15 and then 62. PET scan showed early carcinatomasis of the peritoneum. I am going through the wild stage of figuring out what to do again. I am researching this option and know a surgeon that does this. I just wonder if anyone had any experience with it.

Relapsing is tough. I didn't want to post and cause anxiety or suffering to others. My last chemo was July 16 2009. But the rest of you in NED stay there. I will keep you in my prayers and keep me in yours!

Diane (And I was just getting attached to hair again!)

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Diane,

I am very glad that you made the decision to post what was happening with you! As you know, we all know that recurrence is a possibility, but we take each day and live it to the utmost. We are also here to provide support, prayers, positive vibes, etc. each other. You have been doing this for months and I appreciate your thoughts and input that you post.

SO...let us be here for YOU!

No, I do not know anything about the treatment you mentioned but maybe other "sisters" will. And if not, please share with the rest of us, what you find out too!

Thinking of you!!!

Karfen

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I know your pain, sweet girl. Too well. But remember also that I had a scary PET scan in November that lit up 3 lymph nodes; and a new PET last week that showed 2 of them GONE and the other one now just 12mm and NOT lit up. And you will also beat back the beast again! It's exhausting to think of going into battle again, and it's a bummer to be bald again. But it's do-able. Please get us the details as they unfold and we will research and help all we can.

Are you asking about IP chemo? There are some women on the Ovarian Cancer Board that had IP chemo that knocked them into prolonged multi-year remissions. Had my cancer been isolated in the peritoneal cavity, I would have definitely fought to get IP chemo, even though I have heard that it is a rough chemo to get through. But EFFECTIVE; everyone that could tolerate it had good results that posted, I'm pretty sure.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I will be praying for you. Hair isn't all it's cracked up to be...I have gotten used to being bald. Thank you for posting, although I am sorry for the recurrence. Remember you have people here who care about what happens to you. Norma

A1pena's picture
A1pena
Posts: 93
Joined: Jan 2010

Hi There,

So sorry to hear about your recurrance. But it sounds like heated chemo would be a great option for you. Below is a study that Claudia had posted a little while ago about this exact scenario. Sounds like a great option that has relatively low side-effects. Here is her post again for easy reference:

Cytoreduction and intraperitoneal heated chemotherapy for the treatment of endometrial carcinoma recurrent within the peritoneal cavity
C.W. HELM*, C.R. TOLER*, R.S. MARTIN III†, M.E. GORDINIER*, L.P. PARKER*, D.S. METZINGER* & R.P. EDWARDS*
Divisions of *Gynecologic Oncology and †Surgical Oncology, James Graham Brown Cancer Center, University of Louisville, Louisville, Kentucky
Correspondence to C. William Helm, MD, Division of Gynecologic Oncology, James Graham Brown Cancer Center, 529 South Jackson Street, Louisville, KY 40202, USA. Email: cwhelm@uoflobgyn.com
Copyright 2007, Copyright the Authors Journal compilation
KEYWORDS
cisplatin • hyperthermia • intraperitoneal chemotherapy • IPHC • recurrent endometrial cancer
Helm CW, Toler CR, Martin RS III, Gordinier ME, Parker LP, Metzinger DS, Edwards RP. Cytoreduction and intraperitoneal heated chemotherapy for the treatment of endometrial carcinoma recurrent within the peritoneal cavity. Int J Gynecol Cancer 2007;17:204–209.

ABSTRACT
Abstract.
Our experience with hyperthermic intraperitoneal chemotherapy (IPHC) in conjunction with surgical resection for endometrial cancer recurrent within the abdominal cavity was reviewed. Eligible patients underwent exploratory laparotomy with the aim of resecting disease to ≤5 mm maximum dimension followed immediately by intraperitoneal perfusion of cisplatin (100 mg/m2) heated to 41–43°C (105.8–109.4°F) for 1.5 h. Data for analysis was extracted from retrospective chart review. Five patients underwent surgery and IPHC between September 2002 and January 2005 for abdomino-pelvic recurrence. Original stage and histology were 1A papillary serous (1), 1C endometrioid with clear cell features (1), and 1B endometrioid (3). Mean age was 61 (41–75) years, mean prior laparotomies were 1.4 (1–2), and mean chemotherapy agent exposure was 1.6 (0–4). Mean time from initial treatment to surgery and IPHC was 47 (29–66) months. Mean length of surgery was 9.8 (7–11) h after which three patients had no residual disease and two had ≤5 mm disease. The mean duration of hospital stay was 12.6 (6–20) days. Postoperative surgical complications included wound infection with septicemia in one patient. Mean maximum postoperative serum creatinine was 1.02 (0.6–1.70) mg/dL. There was no ototoxicity or neuropathy and no perioperative mortality. No patients have been lost to follow-up. Two are living disease free at 28 and 32 m and two are living with disease at 12 and 36 m. One patient died at 3 m without evidence of cancer. Two patients who had no residual macroscopic disease at the end of surgery are alive at 32 and 36 m. The combination of IPHC with surgery for recurrent endometrial carcinoma is relatively well tolerated. The unexpectedly long survival seen in this cohort supports a phase II trial of IPHC with cisplatin for recurrent endometrial cancer.

Best of luck- you will be in my thoughts and prayers!

Hugs,

Amanda

Songflower's picture
Songflower
Posts: 632
Joined: Apr 2009

I want to thank you all for your support during this difficult time for me. I didn't expect it to happen so fast. My husband and I fall into each others arms crying. I told one daughter tonight; the other is getting research samples off the coast of Chile and I can't tell her. I told other family members. Everyone's crying. I didn't want to post all of this; I didn't want to discourage you.

I'm getting the port back in. I have my calendar full next week. But all of your responses; they're just so wonderful. I love you all. I wish I could scoop you up and hold you close. I'm trying to figure out what to do. They do chemo first for a while, then the heated IP (which is quite a surgery) and then chemo again! I already have neuropathy from the breast and last episode of chemo. I have accepted that if I have more I will most likely need medication the rest of my life to control it. I think I will be on disability for quite a while; I did make my job though and kept that and my insurance!

I will keep you posted. I just don't want to make others discouraged. Remember, most women are doing so well. If you want me to keep posting I will.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Diane....KEEP posting!! We care about you and want to know what is going on with YOU! We also learn a great deal from the postings of others! You will beat this.....I KNOW you will!!

HUGS...Karen

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

Dear Diane,

Thank you so much for posting about your recurrence. If I were facing peritoneal carcinomatosis right now, I would definitely seriously consider hyperthermic intraperitoneal chemotherapy (IPHC)(HIPEC). I did quite a bit of reading about this treatment online late last year and understand that there have been some very much improved long-term outcomes using this therapy. I wondered why all of us were not initially offered this as an adjunct to the complete hysterectomy surgery. Perhaps cost is a factor. I think the studies went back to the early 2000’s. This therapy does appear to be rigorous, but of course, none of what we have already been through is for the faint-hearted.

My last carbo/taxol infusion was in early October 2009. I had my port removed in November after a NED CT and a CA 125 of 6. My hair is now an inch long, and already I am thinking about the very real possibility of recurrence. I am not looking too far into the future. I am not just simply enjoying my current NED status. Just celebrating my current status would make me feel like I am hiding my head in the sand. I try to enjoy the present, I hope for the best, but I also consider other possibilities and try to plan for them as well. My thinking ability is still quite challenged by "chemo brain". I am still unable to do a lot of research in a short period of time, so I am trying to keep as up to date as possible on newer and additional treatment options by using the "slow and steady" method of research.

I am sending a big cyber hug to you and your husband. I know from your history how tough you are, but such a quick recurrence is quite a blow for both of you and for your family.

Please continue to keep the board informed of your questions, your thinking, your uncertainties, your decisions, your treatments, your lows, and your highs.

Sally

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

Diane my heart goes out to both you and your husband. It really surprises me because your stage was 1-C. I too had positive peritoneal washing, 5 positive lymph nodes and was stage III-C. I find out my CAT scan results on Tuesday. With both you and Linda having reccurences.....I worry about my results. But I am still hopeful that my CA 125 is just stabilizing.

I have not read anything either about your recommended treatment, so will be interested in finding out what is in store for you. You will remain in my prayers. You have been through so much already. You are very strong and I admire your strength and positive attitude. In peace and caring.

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

Dear Diane,

I was glad to see responses from Nancy and Nancy on the OVCA board. I'm still hoping someone who has had the HEATED IP chemo will respond. I know several others on the OVCA board have had IP chemo, but perhaps not for the serous type of ovarian cancer. Regardless, the IP treatment would probably be the same for other types of ovarian cancer whether as part of the original treatment plan or as part of a treatment plan for OVCA recurrence. I would expect it would be the same, too, for people diagnosed with primary peritoneal cancer.

Many women read these cancer boards without joining or join but never post. We need to hear from more of you!

Sally

deanna14
Posts: 733
Joined: Oct 2008

Diane,
You are so strong and a very important link in our support chain! I don't think I am the only one who wants us all to support one another through the good and the not so good. Sharing our experiences helps us all in so many ways. Someone may gain valuable information from reading about your experience. If you are willing to share your journey, please continue to keep us posted on how your are!! Were you having any symptoms?

I am sorry you are going through this again and so soon. My heart goes out to you and your husband and I will be lifting you up in prayer. I don't want you to feel that you have discouraged me. It just makes me a stronger fighter because cancer is messing with one of my sisters!!!

I don't have any knowledge to share about the treatment you mentioned, but as Linda said, you might jump over and chat with the girls on the ovarian board. If memory serves, I have read about IP treatments over there. I too wondered why it is not an option presented for uterine cancers as so many of us had malignant cells in the peritoneal washings.

Hang in there and keep fighting this ugly monster!!

Love and Hugs,
Deanna

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Diane, I have tears in my eyes as I read your posting about your reoccurance. Thank you so much for posting....we all care deeply about you! I will see if I can find some more information about the heated intraperitoneal chemo. I am sooooo saddened to hear of your reoccurance. We all live with that fear in the back of our minds but try to take each day as they come. Words somehow fail to convey what my heart feels. I know you are strong and will keep fighting! You are in my prayers. (((HUGS)))
Lori

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Try the site www.appendix-cancer.com. It is a site by a RN who is a 10yr survivor of appendix cancer. On the left margin there is a link article about intraperitoneal heated chemotherapy.

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Diane,

Sending thoughts and prayers your way. So sorry for the reoccurance, but thanks for being courageous enough to share it with us.

Please know we are all here for you :)

Laurie

california_artist
Posts: 850
Joined: Jan 2009

Damn it! Not you!
i was so sad when I initially read this that I started to cry in the friggin' library. couldn't think straight and lost that post. Thought I'd try again today.

the biggest thing I want to say is that I love you and will be thinking of you with hope and a fighting spirit until this too is resolved for the best outcome.

do you ever wish you had one of those old fashioned howdy doody clown punching bags so you could just wail on it and hollar at it til you felt better. I think I may have to see if I can find something like that. When I was on the board all the time, I lived, slept, dreamed and wrote about hope all the time and it reallly kept my spirits up. Now that I only come on once in a while, I find that I am sorta without that fight. But will try to find it for you.

I think the fight is very important. Think I'll go and see if I can't just get mine back.
sure you will too as soon as you can get up. Dust yourself off and start all over again...

Love ya,

claudia

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I agree that we all should WRITE rather than try to protect each other. We are all dealing with fears and information is power and we need all the power and support we can muster.

I am very sorry to hear your news, Diane. Mimi mentioned this heated therapy quite awhile ago and I think that this is a good protocol - one that I would definitely check out. I recall hearing that this is a ONE SHOT deal though - If you don't have it at the right time, you can't go back and get it done in the future. I may be wrong, but check this out.

Keep fighting!!! Love and blessings, Mary Ann

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