Carcinosarcoma treatments?

[KristinS]

My 67 year old mother was just diagnosed with
ovarian carcinosarcoma (apparently very rare - about
1% of ovarian cancers). She had an "optimal
resection" of the tumor 4 weeks ago, they removed
everything visible. She is stage 3b, otherwise very
healthy. We have a couple of weeks to explore
options for treatment and are just beginning our
research. The options her oncologist laid out were:

1 - IV chemotherapy w/drugs traditionally used for
ovarian cancer

2 - IV chemo w/more aggressive drug combination

3 - IP chemo (directly into the abdominal cavity);
She had a port for this inserted during surgery, but
the oncologist seems to be steering us away from
this option as too invasive and no clear benefits
documented for this type of ovarian cancer (mostly
because there are so few cases).

4 - no chemotherapy.

Any advice or recommendations would be most welcome!

[Mikeyg1106]

Hi, I'm looking for anything that can improve my wife's chances in fighting this disease.  Can you further elaborate on what nutrition method you are using?  I know that I have heard in previous years that nutrition can help the body fight cancer and am looking for any info I can find.

Thanks!
Curt

[benfranklin]

To:  KristinS

Based upon my wife's experience with advanced (stage IV) ovarian cancer
it is very important to look at nutritional issues as a complement to whatever conventional medical approaches that are being done.

There are things that can be done at home in your own kitchen
that may be very very beneficial.

My wife has a special diet she uses during chemotherapy
and so far she has had great results, with CA 125 coming down from
3800 level to about 45 after surgery and four treatments.

Will she go further to remission and will she stay in remission?
I do not know but she is at least doing what she can
at home to complement what benefit there may be from
what the doctors do.

Doctors can remove cancer cells by surgery, they can kill cancer cells
with chemo and radiation.  But so far, because they typically
do not work with nutrition in any meaningful way, the
cancer will typically recurr.  Unless they adress the nutrition
and other lifestyle issues which may be at the root or cuase
of the cancer, then they are powerless to prevent a recurrence.

With Kind Regards,  BenFranklin

[MNP72]

Has anyone used Hexalen pills yet? My mom was given Ixempra for her latest tx but it only worked for a short period of time. She wants to keep fighting, so her Dr said she could try Hexalen. It is used for other types of ovarian cancers but we are willing to try anything at this point.
x~Michele

[Helmar]

Hi Marty...I've replied to you on another thread re Gemzar. That was the worst for me re the bloods. Doxil gave me huge and sore mouth ulcers. As far as I know, Avastin is the one that causes bowel perforation. My Oncol. has suggested that for me next, but we are a little dubious because I've had Ulcerative Colitis in the past, and so not sure if my bowel could take it or not. Will need to go into it well first. I've not heard of Flavopridol.. and I've never had Cisplatin, as my Oncol. believes that carbo does the same job without the harsher side affects. I'm like Leslee too... I don't like the idea of a port, and so they find a vein in my arm or the back of my hand each time. My veins are standing up well considering I've been doing this poison for 4 years now.
I only had 4 'shots' of Doxil because of the huge and many sore mouth ulcers. Apparently too much is not good for the ticker either. It worked really well for me, and maybe I'll take it again sometime in the future.....mouth ulcers or not. Anything to survive.
Sorry I can't add any info re the Flavopridol Marty, but hope that whatever Leslee decides on, works well for her. She deserves a break of this stuff too.  Hugs to you both...Helen...

[SimplyStar]

Have a question for you  Just got home yesterday and spent the day with Leslee, she has her 9th Doxil tomorrow,  she received a letter from Mayo suggesting a combo to follow the Doxil   Flavopridol and Cisplatin, we did a little research and it sounds like a good combo  but has to be done trhough a port and Leslee does not want one. Evidently it is done for 21 days  with a 24 hour pump??  We could not find the side effects listed,  have you heard of this one?  Good results in the trials. Leslee does not want to try the Gemzar, is too scared of the bowel perforations. I had to smile when she said she will try anything that does not make her lose her hair again.  How long were you on doxil before?  she says it is taking longer between infusions now to lose that "chemo" feeling.

[Helmar]

Hi again Michele.. the chemo combination that worked the best for me was Taxotere/Carboplatin. I've never had Taxol or Cisplatin, as my Oncol. says that what I had did the same job, without the more harsh side affects. He is talking about giving me Avastin, along with another, maybe Caelyx (Doxil)... but I'll see about that when I have my next appointment in mid March. I feel for your Mum having the two cancers to battle with, and I can only hope that she does well, and will soon be feeling good. I hope you have  nice weekend... we are coming into Autumn here now, so it's getting a little cooler, which is nice.   Hugs to you and your Mum, Michele....Helen...

[MNP72]

Hello! I am glad to hear how well you are doing!! I believe the difference in cancers is that one is very rare and more aggressive than the other, it is a mixed cancer.
My mom has been treated with several types of chemo. I'm sure you probably have had one of these yourself. She started with Carbo/taxol. Then switched taxol to taxatere. She has had gemzar, cisplat, ifax, avastin, adriamycin, abraxane, herceptin,(my mom also has breast cancer)  tykerb.....that is all I can think of off the top of my head. When she got the ifax (with mesna), adriamycin and cisplat (with a lot of fluids) that was given in the hospital over 3 days. That protocol worked the best. I think that might be what KristinS was talking about when she said to be more aggressive, but I'm not sure. Thank you for your warm wishes! x~x~x

[Helmar]

Hi Michele... It's KristinS' Mum who has ovarian carcinosarcoma, but I was curious as to what the 'more aggressive drug combination' was that she mentioned in her post.
I was dx 4 years ago with Stage 4 ovarian cancer. I'm not sure what the difference is between the 'run of the mill' ovca...like what I have... or what your Mum has..ovarian carcinosarcoma .. but it's all horrible.
I've had all types of chemo, pretty much most of the 4 years, but although I won't be cured, it's being treated like a chronic disease, and I'm feeling well, have a good quality of life, and a good appetite, so I'm o.k.. I hope your Mum responds to the chemo (what chemo is it Michele.... it maybe something that I've had too)?
Give your Mum my warm wishes and I hope to hear good news for her soon...hugs..Helen...

[MNP72]

Hey Helen,
I just wanted to touch base with you because it doesn't look like anyone else has responded lately.  Are you going through treatment or is it someone you know? My mom has this cancer. She was diagnosed with stage 4 in 2005. She has done fairly well with her battle but is going through a bit of a rough patch right now. The doctor is trying a new chemo on her today. We are hoping she will respond to it. What treatments have you (your doctor) used? I look forward to hearing from you.
Take care, Michele

[Helmar]

Hi Kristin... I'm just curious as to what Option 2 is... "IV with moe aggression drug combination".... what were the drugs, do you know? I would be interested to hear. I hope  your Mum responds to the chemo, and goes into a long remission. Thinking of you and your Mum.... hugs....Helen...

[MNP72]

How old is your mom and what type of chemo did the doctor use with her? Congrats on her great news!
If anyone else has any updates or new procedures/chemo please share!
My mom has been battling this for 3 years and I'm searching for anything that would help with her fight that she hasn't already tried.
God Bless,
MNP72

[nodie]

I found your post helpful and informative -I was diagnosed at 49 in jan 07 have had surgery -removal of tumours and hysterectomy and chemo-6 cycles ofepirubicin and carboplatin -feel well at present -glad I have lived this long!! I have just found out I have an alteration to my brca 2 gene-my sisters and daughters are all to be tested -we all hope that I am the odd one who has been very unlucky

[shaneekirk]

Hi, all!

My mother also developed MMMT in January of 2005.  Similar to one of your stories, she was at Stage 4, inoperable (since the cancer was covering most of her liver -- spotted like a leapord).  The outlook wasn't good.

However, we were fortunate enough to find a wonderful Dr. here in Houston, TX.  Dr. Fromm.  My mom received about 12 chemo treatments (which she handled really well), and then Dr. Fromm decided that everything had improved enough for surgery (the cancer on the liver fully cleared on its own).  She was in remission from January of 2006 to just recently.

She had a very small recurrance, and just went under her 2nd surgery on Monday (yesterday).  The Dr. expects that she got all of the cancer, so she will be in a "technical" remission (bassed on CA-125 counts) when she recovers from surgery.  She's going to have 3-6 chemo treatments anyway though.

My mom may be one of the "lucky" ones, but I think that Dr. Fromm is wonderful too.  You may want to Google for her.  Dr. Geri Fromm - http://www.houstongynonc.com/practitioners.asp

Good luck with your mom!  You really need to move fast on this one!

Also note that this type of cancer is NOT curable.  Remission can be achieved, but it unfortunatley is not permanent.  Close monitoring after remission is essential to be able to find the return of cancer quickly.  Let me know if you have questions on this one.

Shanee

[stephers]

Hi there, I am sorry about your moms dx, I too have ovarian carcinosarcoma I was diagnosed March 06 at age 26. My treatment has taken the following path:
-March 06 sugery
-May 06-Oct 06 9 rounds of TAXOL/ CARBO. This was fairly successful in that it cleared up tumors that had spead to the lungs & liver as well as some lymph tissue, unfortunatly by the ninth treatment a new tumor had grown in a lymph node which indicated that I was resistant to the chemo now
-Dec 06 2nd surgery to remove the tumor
Jan 07 - Mar 07  3 treatments Doxil or in Canada we call it Caelyx. I had skin reactions to this drug and well my tumor grew alot according to a ct scan therefore they decided it was not working. However I had a scan 1 month after discontinuing this treatment and the tumors actually have shrunk...
May 07 - Started Ifosfimide and Cisplatin

Regardless of the treatments and hairloss I had a good year still. . So my advice would be to try something. I would not go no treatment. Who knows one of these drugs just might work. I was told I had two months a year ago. And in this year I seen my precious little nephew grow from infants to walking and talking. If you look back a girl named MISSYM wrote that her mother has carcinosarcoma and I believe achieved remission. That stats are horrible, however with such a rare cancer I think there is a lack of stats all together to form an hypothesis. Anyhow hang in there, I hope all goes well for you.

I would like to mention that carcinosarcoma seems to be popping up more and more on this site, I am going to look into getting a site specifically geared towards this rare disease.
I'll PRAY FOR YOU

[Amaris]

Are you in the states? Alot of people I've met on here are in Canada or overseas & their healthcare system is different than in the US. I would definitly look into every possible option, maybe Clinical trials. Try to get in touch with any large local cancer hospitals like MD Anderson. My mother had Carcinosarcona Ovarian cancer (mmmt) She was diagnosed in September 06' after she had a full Hysterectomy along with pieces of her liver, spleen & a diaphram removed. They also installed a port in her stomach during the surgery for the chemo treatment. She had it through IV & her abdominal port. Unfortunitly the tumors were just combating the chemo the whole way through & once she was done with her treatments they came back & by then she was too weak to fight it off. She passed away @ 42 in January. We didn't know the type of ovarian cancer she had until the month she passed, I'm not sure if she kept it from us or if she just didn't fully understand how agressive this cancer is. Either way I know that I would have looked into alternatives along with the chemo if I had known from the begining what we were dealing with. There are people who live through this, the problem is that it's so rare that many doctors don't know any other way of treating it. I will pray for you & your mother, please let me know what you find out. God Bless!