PRIMARY PERITONEAL CANCER

Christina_31 said:

Primary Peritoneal Carcinoma
Hi Chicagocx, I can identify with you. I was diagnosed this past April with Serous Papillary Primary Peritoneal Carcinoma, Stage 3C @ age 31. It find it extremely fusterating when trying to information about this diease. As you said and many of us with ppc find out, yes it behaves as ovarian ca, but it is different. Currently I am on the GOG-0218 phase III trial with Carboplatin & Taxol -/+ bevacizimab (avastin). It is a blind study.

After my third treatment, my CT scan of the abdomen and pelvis did show some improvement. I would also like to mention that I was only have to have one fallopian tube and ovary removed during my surgery, not that total abdominal hysterectomy and omentectomy that was planned.

I have just completed cycle #6 and my CA-125 is going up. It is the scariest thing in the world. I feel that I am at a cross roads....and considering a second opinion. Currently I am being treated in the Chicago. So I guess my question would be to anyone reading this. Does anyone have any recommendations, as to who to seek out for a second opinion on this type of cancer? I did see that someone mentioned Mayo Clinic, Rochester, MN....and that is definately a medical center that I am considering.

Take Care,

Christina

Tina Brown said:

Hi Gina
Your mum sounds like she is in good hands. Yes she can just have treatments. I never had surgery because my cells were spread too wide and it would've been a very invasive procedure. So I had 6 rounds of carboplatin and Taxol every 3 weeks. My CA 125 was similar to your mums at 1119 and by the end of my treatment is was 34. So chemo alone can work. It is just over 6 months since my chemo stopped and I am feeling really well. However I am a little younger than your mum - I am 50 and was very fit and active that was why they gave me taxol as well (taxol is the one that caused your hair to fall out)

My CA125 went up to 71 last visit so I am waiting for the next one to see what the doctors wan to do with me.

Hope your mum does ok, Tina xx

Michelle E said:

Chemo side effects
Hi Hannah and to everyone else on line,

My mum is 66 and was diagnosed withh PPC about 8 weeks ago. She had a hysterectomy last year however ovaries were left in. Mum had her surgery aroung 5 weeks ago where they removed her ovaries and her omentum. Pre the surgery we new that there was cancer in the omentum also and that it would be removed. The surgery also revealed that it had started to grow where the womb used to be and had started to go to the ovaries however did not start there, more than likely started in her tubes as it was there also. So overall very scary as now confirmed in 5 different places.

Her oncologist explained that the surgery is really about exploring futher and removing what they can to better assist the chemo as the chemo is the only real cure for this. Mum's chemo was last thursday (6 days ago). She was told the first 3 days are the worst however it has just gotten worse every day. Her symtoms started on day 2 with severe stomach pain, leading on to nausea, constpation which has then lead onto severe dehydration from vomiting, back in hospital yesterday on a drip, given enima which has brought on sever diarrhea. Overall she is in excrutiating pain and cannot keep any food down and does not want to even continue with the chemo if it continues like this. She called the cancer help line and they put her in contact with a breast cancer survivor who couldn't relate to her chemo reaction as she didn't have any. So mum is feeling quite hopeless about the whole thing and really wants to know from otheres if this gets better as we are now at the end of day 6 with no light in sight. Her other concern is that if she reacts so severely that they may not be able continue the treatent anyway (she ended up back in on a drip 9 days after the surgery also dehydrated ect).

So overall like you I am looking for some responses on the chemo side of it all as I have read all of the postings and most people don't refer to their chemo experiences as being horrific, or maybe they were and the memory has just faded. Hannah in answer to some of your specific questions in your last paragraph,my mum's cycle is to have 6 treatments overall every third thursday. Her oncologist told her she will lose her hair. Side effects are aches in knees and joints and if the feet and hands experience too much numbness and tingling it may mean slowing down treatments as this can result in not being able to walk.

Many thanks to all of you brave ladies for sharing your stories and helping those of us that are trying to help our mums through this.

Michelle

blondecat said:

debulking
I started posting a different thread on our friend, Gerri. She was recently diagnosed with stage 4 PPC. She has seen four gynecological oncologists. Three of the four say chemo, surgery, more chemo. One doctor thinks that because the lung is the area that lights up the pet scan, she should have a lung biopsy before starting chemo. She has signs and symptoms that point to PPC. Gerri is accepting of the chemo, but is rejecting the surgical treatment. She is asking me to find out if others have been treated successfully with chemo only. She is aware her prognosis, per the books, is approx 3 years with all treatment. Would her prognosis be the same without surgery? She is willing to fly anywhere for additional opinions. I am fearing she is seeking an answer that doesn't exist. I know if it were me, I'd be anxious to have the surgery and have them get out as much of the cancer as they can. I am checking out MD Anderson in Houston, Bringham and Women's in Boston, Sloan Nettering in New York and Mayo Clinic in Rochester. Again, she has seen a couple of the best so far, going to Rush in Chicago and Dr. Doran in Park Ridge. Please, any comments, direction is so appreciated and needed. Thanks.

blondecat said:

sand like tumors
Thanks, Tina. Like you, Gerri's tumors are undetectable via pet or cat scans. The doctors describe her tumors as "sand like". With that said, what do you think is "too tiny" for a surgery? I'm wondering if medical practice is different in the UK? This is all so confusing as you seem to have great initial results from chemo only. The surgery is a serious one, with surgeons telling Gerri it would be a 6-8 week recovery period. Carbo and taxol are the drugs recommended for Gerri as well. There are a few surgeons here to seem to be using a heated chemo approach delivered direct to the perineum after debulking surgery. Anybody have any knowledge or experience with this treatment? Thanks to all -- Donna

spa said:

PPC, stage IV
HI,
I was diagnosed in December, 2009 with metastatic ovarian cancer. I had a right pleural effusion that got me to the hospital. Until then, I had vague symptoms but suspected my upper abdomen looked fatter and different. This has been a fear for quite some time in all honesty. I am 55 and a nurse, so I've passed the vague symptoms off as being due to post menopause and aging.
I received my first round of chemo while in the hospital in December to prevent the fluid from coming back around my lung. The CT scans showed caking in the omentum, but minimal disease if any in the pelvis. That's when PPC was mentioned. In January I saw a surgical oncologist who agreed with local physicians about waiting to do surgery until I had 3-4 rounds of taxol and carbonplatin. This did not bring peace to my mind, so I traveled out of state to see a surgical gyn oncologist recommended to me by a dear friend. He concurred with the care that I had received, ordered another CT scan and advised immediate expoloratory laporotomy to remove all that he could of the cancer.
I had surgery 2/2/10 and praise the lord it did go better than expected with the majority of the cancer being in the omentum, which was removed, along with my spleen, ovaries, tubes and uterus. Two lymph nodes were removed as well. All were positive for low grade serous cells on the surface. I have just completed my 5th round of taxol/carboplatin and am contemplating Intraperitoneal chemotherapy.
Unfortunately, there is a difference in opinions between the surgical oncologist and the medical oncologist and I am in the middle wanting desparately to do everything possible to live a long life. I believe that God has been with me through this all and will continue to guide me in seeking the best options. Most of the time I am happy and optomistic regardless of what the internet and research shows statistically. I feel great and find it so hard to believe that this disease is in my body. I hope that you all will continue to research and share what you find on this network. There is hope. New research is coming out everyday and we know that good nutrition, exercise and above all faith, is the best treatment of all.
Dr. David McIntosh at the University of Mississippi is one of the most caring, progressive and expert GYN, surgical oncologist in the nation. I believe that I did see a comment of someone asking about a physician. It is critical that anyone facing this disease seek expert care from an oncologist specializing in this area.
Begin each day knowing that today is a good day and there is hope. Be aggressive in seeking the best of care possible. We can beat this. God Bless.

pattysoo said:

When to start chemo
Everyone is different and recovers at a different pace. I was ready (and eager) for chemo 4 weeks after surgery. I worked really hard at recovery: ate carefully, began walking right away - even if it was just half a block to begin, and rested a lot too. I had no port for drainage, the ascites were removed during surgery and then subsequent chemo prevents them from reforming (I think). Good luck.