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Carcino Sarcoma or MMM Tumor

lutefisk
Posts: 1
Joined: Mar 2019

I was diagnosed on Oct 10, 2018 with Carcino Sarcoma, also known as MMM Tumor ... very rare and vary deadly. Had a hysterectomy (keep vagina only) on Oct 15, 2018. Started 4 rounds of 3 days a week of Taxol and Ifossimide chemotherapy every three weeks. Had a scan and learned on Feb 13, 2019 that the chemo did exactly nothing for the cancer and the cancer was in my bones, lungs, and liver. Since that time I have had radiation treatments on the tumors on my spine, orbit bone, sternum bone, and one rib bone to minimize spinal cord and brain damage and pain. I had a MRI of brain on Mar 8, 2019 to check of cancer has spread to brain. It has not.

 

I'm currently in the process of a Phase 1 Imunothery trial that if all of the prerequisites have been met, will start Apr 10, 2019 or so.

 

My immediate question is "has anyone found a non-conventional treatment, let's say testicular cancer chemo regimen worked for my Carcino Sarcoma cancer and extended her life.

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I am very sorry to hear your diagnosis. There are other ladies here with various stages of MMMT. Others here also using immunotherapy quite successfully and I'm sure they'll be here soon to help out. You can do a search on "MMMT" to get information previously posted here. 

Love, 

Eldri 

cmb's picture
cmb
Posts: 396
Joined: Jan 2018

I'm very sorry that your front-line chemotherapy treatment was not effective. Since there hasn't been a lot of research on MMMT, drugs typically used for other cancer types have been tried to treat this cancer with varying degrees of success. Some women with MMMT have found better results with drugs such as Taxotere, Gemzar, Doxil, Abraxane, and Avastin.

More recently, immunotherapy is also being tried, so I hope this proves viable for you too.

There is a Yahoo group that is specifically for MMMT. You need to subscribe to the site at:

https://groups.yahoo.com/neo/groups/UterineMMMT/info

I've found that membership approval takes a few days. Unfortunately it's not very active right now. But there are some long-term survivors who still post there occasionally. Some of those women had multiple cycles of chemotherapy, changing to other drugs as the ones they were on stopped working after a period of time.

I've mentioned this in an earlier post, but it bears repeating. You may want to read the profile of apoohneicie at https://csn.cancer.org/user/232818. She was diagnosed just before turning 31 with stage IV MMMT.

However, she persevered with the treatment her doctors prescribed. And while she doesn't post to this site or the MMMT Yahoo site any longer, she is still alive at 42 and doing well. You can see her earlier posts on Twitter at https://twitter.com/apoohneicie and her later posts at https://twitter.com/morphisa. She proves that some people do exceed expectations, even for rare and aggressive, late stage cancers.

As for me, I was diagnosed with Stage IIIB MMMT in November, 2016. You can read the particulars about my experience with this cancer by clicking on my username under my picture. I am currently NED.

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

Wow, CMB, glad you posted the link. I don't have that type, but went to read it read her story and it's si very inspiring.

cmb's picture
cmb
Posts: 396
Joined: Jan 2018

LisaPizza,

I, too, find apoohneicie's story very compelling. I hope that as various clinical trials continue, researchers will continue to uncover more reasons why certain treatments help some people and not others, so that women like lutefisk won't have to try multiple treatments to find what will work for them.

I've written about my mother's experience with cancer in another post, which is also a positive story that I think is worth sharing again with newer members.

In 1980, my mother was diagnosed with cervical cancer. I don't know her original stage since my parents didn't keep any records that showed this, nor do I remember asking. Pre-internet there wasn't much information readily available either. But I suspect that it was a later stage since she struggled with this cancer right from the beginning and for the next 7-8 years, trying different chemotherapies and having multiple surgeries as the cancer spread.

Finally she saw a different oncologist in 1987 who wanted her to try a new chemotherapy that had just been approved by the FDA. It was a rigorous regimen that had her stay in the hospital for several days every 3-4 weeks while receiving treatment.

This treatment actually worked and put her in remission for the remainder of her life. When she died several years later (she was in her mid-70s at the time of her death) she was still cancer-free. So new therapies can indeed come along and work for seemingly intractable conditions.

Lutefisk – we'll be keeping our fingers crossed that the clinical trial you'll be on gets rid of the tumors.

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

It's so amazing that sometimes even advanced cancer responds so well and for so long to a particular treatment. Sure makes you feel like each of us (or at least many more of us) should have that magic bullet out there, if only we knew what it was. If only science could figure it out.

BluebirdOne's picture
BluebirdOne
Posts: 206
Joined: Jul 2018

information but I would like to welcome you to our board. What stage were you diagnosed at initially? Treatment options are very complicated due to the tumors being tested for HER2, Lynch, etc. I know that the researchers are coming up with treatments that were reserved for only one type of cancer so hopefully that will be an option for you. Good luck, keep in touch and we are here for you.

xxoo

Denise 

janaes
Posts: 783
Joined: May 2016

Lutfisk,

Im so sorry to hear that your original treatments did not work. I go along with cmb. She has great advice. I too was diagnosed with MMMt uterine cancer grade 2 stage 3. Ive been NED for over two years.

I wish you the very best as you go forward.

Please look into the yahoo group.

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