Peritoneal\ovarian
Hello! I am writing for any perspective on what my mom is currently going through. In mid-August I took her to ER with a distended belly, after a CT, was told she had metatstatic cancer but as they were not sure of the primary source, ordered a bunch of diagnostic tests. Everything came back fine, aside from a comment indicating that the right ovary could not be seen. After a month of frustration, told that the cancer is either ovarian that has metastasized to the peritoneal or the primary is peritoneal. Given her very frail and weakened state, she had one round of chemo using only one drug instead of the standard two, within 48 hours the fluid returned and the oncologist indicated that quality of life is the best option at this point. The ascites returns within 2-3 days and she is living with us receiving palliative nursing visits. Thank you so much for reading my post and providing any thoughts or comments. Much appreciated.
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I'm wondering if they checked her appendix? most of the time it starts in the appendix and causes the appendix to rupture it will also cause organs to malfunction. My left ovary was crushed after the cancerous mucin covered it, hardened around it causing it to rupture.
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I had a total hysterectomy in 1982. I did not have cancer.. just ovarian cysts. In Oct 2021 I went to urgent care for covid test. Just feeling a little of and hubby had just finished surgery and chemo a few months before for lung cancer. Didn't want to risk exposing him. The urgent care is attached to local hospital. Since i complained of chest pressure, they took me to er for ekg and blood work for heart. Heart fine, but blood work not. So they did ct scan, which showed mass in lower left abdominal and fluid in abdomin. Thought i had ovarian cancer (uh - no ovaries)Sent to PCP and by the following Friday I had been to a gyn oncologist, had a biopsy and had dx of primary peritoneal cancer.....darn, wish I had had Covid. The biopsy found a tiny, unidentifiable piece of matter in the mass that they said could have been a fragment of a fallopian tube that had been floating around since 1982. Good heavens. So here I am 15 months later - had 4 combo chemo treatments, surgery to remove omentum and blast any cells (living or dead), 4 more combo chemo treatments - then tried rubraca pills. Did not tolerate them - labs kept showing blood cells dropping, while CA-125 going up. So 5 months of that and started a new med combo - chemo Doxil plus Avastin. Combo is once a month with Avastin every 2 weeks. My WBC's dropped quickly, after the 1st treatment, so now have added neulasta to try to offset that, and to offset side effects from neulasta am taking Claritin for 5 days after that med. One thing leads to another and we don't know if any of it is doing any good. My general conclusion is that there is no cure for ppc - just a matter of stalling/delaying its progress. And although I am not frail, not experienced any pain, basically have a general overall weakened state probably from treatments, my main goal for the immediate future is quality of life. These treatments are supposed to go to May, but if I do not start seeing CA 125 dropping I will probably discontinue all meds and just enjoy what time I have. Meanwhile hubby is 3 years cancer free from lung cancer. BTW, I am 79 and was otherwise in good health. I will say prayers for your mother.
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I was diagnosed with primary Peritoneal, serious carcinoma , tumor was on top of an overy so they thought ovarian at first, but once the tumor and all it’s octopus tentacles were removed the overy was fine. This was taken out August 2020, 5 months of chemo 2 drugs, I couldn’t tolerate the last month, so I’m happy to say , Feb 28th 2023, last week, was my 2 year anniversary of last chemo. NED of disease ! There is hope, just have to be your own advocate. Tomorrow I go in for the R.G.C.C. special blood test to see if I still have any floating cancer cells that just haven’t hosted on anything yet. I’ve been getting scans every 3 months, nothing showing up, but why wait for it to reappear? That’s why I’m doing the test so I can see what other natural or drug remedies I need to keep it away. Best of Luck to you….
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That is amazing. So happy for you. I just had a full body ct. Will see Dr to. Discuss results on Thursday and to get another treatment. I think I still have more treatment in store.
I am being treated at Mercy Hospital St Louis, MO, at their Pratt Cancer Center, gyn oncology dept, Dr Dan-Arin Silasi and Dr. Ludmila Shafer. They have a great team and resources.
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Since I was there for second opinion I did not get care there but they were willing if I said yes. It seems like it took a month for me to get in for appointment tho. And they were very thorough on questions & looking at my current charts of everything I had going on. Hope that helps. I do know that getting IV infusions of vit. C , work up to 10k iu’s was extremely helpful to me & my health.
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https://www.ummhealth.org › umass-memorial-medical-center › services-treatments › cancer-care › cancers-we-treat › peritoneal-cancer
Peritoneal Cancer | Cancer Care | UMass Memorial Medical Center
UMass Memorial is one of only three hospitals in New England offering hyperthermic intraperitoneal chemotherapy (HIPEC) and is considered a high-volume program. Our skilled surgical oncologists are nationally recognized for using this chemotherapy treatment. About Peritoneal Carcinomatosis
this procedure I found out is very effective, I believe it also called a chemo wash, where they fill your abdomen with chemo liquid & wash your peritoneal sac& area to kill lingering cells. Very few hospitals do it.
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My mom had surgery (local hospital) it was unsuccessful. When we went to MDA it was with intent of getting HIPEC. I don't know if it is departmental issues but in the gyo unit they do HIPEC at a clinical trial level not standard of care. Since my mom has still not recovered from her surgery, I think HIPEC may be out for now. It would be up to the doctor. That is why I kinda want to take her to a place that does IP Chemo. This seems less invasive, but it still gets the chemo directly on the cancer. Thank you for the responses. I really appreciate the extra voice. It is helping cut through the confusion.
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The IV infusions of high dose vit C kept the cancer from growing more & helped me stay healthy enough to continue a almost normal life 1/2 of every week, I worked, went hiking, & skiing!! I found out all the great stuff about infusions by reading “the Cancer Revolution “ by Dr Leigh Erin Connealy MD She believes in typical cancer treatments & holistic also. Is your mother not recouping from surgery because of the crazy amount of cutting & rearranging they do to us for this surgery?! I was cut from top of pubic bone all the way up past my belly button. 5 days in hospital, I hope she’s on the mend, I know it’s very tough. Keep me posted please. Thanks
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Sorry about your mom's surgery being unsuccessful. I chose laprascopic surgery. It took a little longer, than a long invasive, incision, but was very successful. I was covered with nodules. The omentom was removed also. Was supposed to be in hospital 3 to 5days. Came home next day. I had an incredible recovery. Dont know your moms condition, but Ip chemo can only be used on small tumors. 12 months since my surgery, and my recent ct showed 3 lumph nodes of 1cm each that weren't visible 3 months ago. I am now on Avastin, kytruda and cyclotax. I am blessed that The side effects have been practically nil. I was surprised about yourmombeing told to stop all supplements and vitamins b. I saw Dr Shafer today and discussed this very thing. My b12 level was 2000, which is double the high range number. So I was concerned. (Did I mention i also have ms. Diagnosed in 92 so I have been on b, d, calcium, folic, for years. My neuro is who ran the blood work to watch those). He had already said they were ok to take, with the c). Dr Shafer said to continue with those 4 supplements. She said there are others to avoid, mainly herbs. But it all depends on what chemo we are on. We and the c cells, and meds are all so different. One size doesn't fit all. And things change constantly in medical science. In fact, last week pathology was just redone on my biopsy from 21, to see what the components of the cells are and reviewed the treatment available now, verses just last year. Most important is to be pro-active. Keep us posted on your mom.
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I did read that the tumors had to be small for IP Chemo. My mom does have solid tumors but mucinous adenocarcinoma but it is all over her peritoneal cavity and the organs. They added Avastin to see if they would shrink. She says her intestines feel like they are burning. I think she is having a hard time this round because she is very malnourished.
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I hope they are able to keep her comfortable, it is so amazing how this type effects everyone of us so differently. I have read this type only happens to about 8-10 women in a million !! Is your mom juicing or can she keep food down? They pumped me so full of steroids I actually gained 25 lbs, so bizzare because only 5% of chemo patients gain weight. I’m guessing your mom is losing a lot of weight.. give her lots of hugs & tell her I’m thinking of her & hoping she’s dealing ok , You Tube has some great meditation music if you search for “428 hz healing frequency” music. Very soothing. I love it. Take care
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Thank you. We can use all the well wishes. She has lost a ton of weight. It is hard for her eat sometimes and when she dos eat it is very little. She has nausea (even through the zofran and phegren). Right now, she can keep it down most of the time. My mom has pain sometimes when she eats, her stomach will get hard to the touch. She isn't juicing now. I am going to switch her from Boost to a low carb protein shake. I am looking to eliminate most of the sugar in her diet. I'll see if she will set still for the mediation because I think her tight stomach may be stress. It is in the same area where they cut her.
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