Hi Julie,

I'm here to support my mom.  She was diagnosed in May 2020, surgery in July 2020. Very similar to what you're dealing with (MMMT spread to omentum so 4b).  She completed chemo the end of 2020.  Of course everyone is different, but she handled it with very few issues (she is 73 years old and otherwise no health problems).  I think what helped was her doc was very proactive and made sure she was prescribed medicine to deal with things before it happened (he kept her on steriods for the two days after the chemo to help with pain and energy, she took Valtrex for 10 days after each cycle to prevent mouth sores, took Miralax the day before and day after chemo to prevent constipation).  With this regimin she really only had 1-2 two "bad" days out of the 21 day cycle, and that meant she was tired and food tasted a little weird.  If not for COVID she would have been living a pretty normal life during chemo and we had so many good walks, dinners, etc. that I'm certainly grateful she did it.  One thing that is important is you should ice your hands and feet during the infusion to prevent neuropathy, which is a common side effect with the carbo/taxol chemo combination.  There are many posts on the board about icing if you search for it.

Unfortunately the cancer did return in July.  So she got about 7 months from the chemo.  Other ladies have gotten longer stretches, so this by no means the same will happen to you.  She is now trying an estrogen blocker as her cancer was estrogen receptor positive.  She may also try a pill called Ibrance since that's indicated by her genomic tumor testing (that was done by FoundationOne, I recommend you look into it if you haven't, as it shows what targeted therapies might work for you).  Right now we are in Europe visiting family; it's been a fantastic trip and she feels great.

So no sugar-coating--we know her cancer is not curable.  But in all honesty life in the past year has been quite good for her even with the surgery and chemo.  She is defintely a quality over quantity person too, so I know the day will come when she decides treatment isn't worth it any longer.  But so far that hasn't been the case at all, so I encourage you to at least give chemo a shot to see how you react to it.

Please let me know if you have any specific questions, I may not be able to answer but I will try, and the ladies on this board have a wealth of knowledge that they generously share!

Anne-Marie

Julie,

I was diagnosed with Stage 3B carcinosarcoma (MMMT) in November, 2016. I was in treatment for a good part of 2017, but I have been NED (no evidence of disease) since the end of chemo. My medical oncologist did prescribe a different chemotherapy regimen than the usual 6 cycles of Paclitaxel/Carboplatin.

I don't know if this contributed to my NED status since clinical trials completed after I finished treatment supported the use of the 6 Paclitaxel/Carboplatin cycles as front-line treatment for carcinosarcoma. But you can read about my treatment by clicking on my user name under my profile photo.

I recognize that you are at a later stage than I was, but it's still important to remember that each of us is unique in how we respond to treatment. I've mentioned this in earlier posts, 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 uterine carcinosarcoma.

However, she persevered with the treatment her doctors prescribed. And while she doesn't post to this site any longer, she is still alive at 45. You can see her earlier posts on Twitter at https://twitter.com/apoohneicie and her later posts at https://twitter.com/morphisa.

While she is an exception to the more unfortunate outcome for Stage IV carcinosarcoma patients, she does prove that some people do exceed expectations, even for rare and aggressive, late stage cancers.

And on a different support group site there was a woman with Stage IVB carcinosarcoma cancer who survived nine years and never was NED. Other than during her first six months of treatment, she continued to work through all her subsequent chemo treatments over the years.

Here's a link to an earlier discussion on this board that you may find helpful too:

https://csn.cancer.org/node/322409

Please ask any questions you might have. We want to support you during this time.

I don't have MMMT but I thought I'd comment as a fellow Stage 4B. Mine is endometrial adenocarcinoma, less aggressive than yours, but by the time I was diagnosed mine had spread to my lungs and things didn't look good. I had 6 rounds of carboplatin/paclitaxel and brachytherapy, followed by hormone therapy (my uterine cancer is estrogen driven) and by the end of chemo all of the lesions in my lungs were cystic (dead). I I've been NED for three years now. Stage 4B is not considered curable, but it's treated as a chronic disease and there is hope for many more years ahead.

Tamlen

I am not a person with Stage 4 B, but I wanted to say hi and I'm glad you found this site. You are wise to have found your way here, as this is absolutely the best online--and perhaps simply the best, period---place to get support and information (in my opinion).

When I was first diagnosed with Endometrial Adenocarcinoma, I was so overwhelmed that I overdid it with research and reading, and was causing myself a great deal of stress. I wanted to mention that you may want to limit yourself if you spend too much time reading and researching. It helped me. Also, don't hesitate to ask your doctor for some medications for anxiety if you need some. Those can help too. I personally used CBD - THC gummies when I needed relief from stress.

All the best,

Deb 2 (you'll meet Deb 1 at some point!).

ps. If you "click" on a person's name (on the left, near their avatar/photo), you can read about the person. You can write your own cancer history, diagnosis, etc. 

Julie_123 said:

MMMT Stage4B

Hi Anne Marie, 

 

Thank you so much, for the information on the drugs to ask my Doctor about...My brother had him checked out and he is pretty solid, but I don't get the feeling that he is proactive...I feel like I have to ask him lots of questions. I just don't  know which ones to ask...

Thank for the advice on icing my hands and feet during infustion to prevent neoropathy. That is definately going to happen.

I will be getting the same chemo therapy treatment that your mom had, from what I have researched it sounds like it is the standard first treatment for both Uterine and Ovarian cancver. 

 Foundation One...I have never heard of them, but I did not know I had an omentum until August 24th.  I flunked biology...  I have been praying for informaiton on other types of therapies.  I have a co worker who also has stage 4 lung cancer with mets to her bones and brain. She has been taking an Imuno thearapy treatment and her tumors are shrinking.  I am not expecting the same results. Last night, I was looking at a website callted the GCS project. I did not have any idea how rare MMMT is; and that because it is so rare it does not get enough funding for research. 

Thank you soo so much for sharing your mothers experience.  Praying that her treatment will continue to go smoothly...

Julie

Hi Julie,

One thing I forgot to add--you should look into getting a port before chemo.  Chemo can be very hard on your veins.  Besides that, my mom's veins are hard to find/easy to bruise, so a port was put in.  It made the chemo infusion process very smooth with no bruising, poking for veins etc.  If you do get a port, ask your doc to prescribe lidocaine to place on the port area about 45 minutes before the infusion starts.  That way it's numb and you feel nothing when they put the needle in.

Anne-Marie

Julie_123 said:

Central Port ideas,

Hi Anne-Marie,

Thank you, that was the first thing on my growing list I am going to want to talk to the Doctor about. I too have very hard to find veins. I can always tell when the nurse or tech is new or if they are an old pro. If they are an old pro they find a vein and it does not hurt that much. When they are inexperienced they have a very hard time and it takes them two or three tries before they can draw a line. I did not know about the lidocaine though and I am adding it to the list. 

I was wondering does the Central line hurt once it is in? Does it hurt going in. Will I be awake....? or do they just numb the spot? Will I be able to not know its there or is it really tender....

I was awake when my port was put in, but they had given me some drugs so that I wasn't anxious or scared. They also numbed the area where the port was inserted. There were big monitors above the gurney that displayed digital images of the area where the port was going inside. I would have liked to watch it being inserted as I was curious about the process. But the doctor made me turn my head completely to the left side so that the right side was unobstructed for him to work. The whole process was pretty fast, and the nurse told me afterwards that I had the "quick" doctor.

I had my first chemo the next day. I think I had some discomfort the first few days, but nothing major. However, getting used to having the port inside took longer. I kept noticing it when I turned over in bed, etc. Not really painful – just an odd sensation.

But I believe some of the other women here were sedated more than I was and don't remember the insertion process like I do.

In October of last year I also was diagnosed 4b Carcinosarcoma (CS).  I had a hysterectomy, with my tubes, ovaries, 4 sentinal lymph nodes and omentum removed.  I had a large tumor in my uterus, a smaller on on an ovary, a couple on my sigmoid colon, and my pelvic was was inconclusive for microscopic cancer cells but we assume they were there due to the tumors on my colon.   I did 6 cycles of Carbo/Taxol (completed March) and 25 extenal radiation treatments (completed April).  There has been no evidence of disease since the surgery.

Chemo was not that difficult for me but the radiation was.   I want to echo what other have said about getting a port.  I belive it makes things much easier.

The biggest struggle for me has been trying not to spiral down into worry and depression.  The doctors I have spoken to, including Dr. Birrer in Arkansas who is supposed to be a preeminant CS doctor, said the chance of recurrance is most great the 2 years after frontline treatment.  Then there is the 5 year mark which the worry becomes even less.  I use this info to convince myself that CS is not always a death sentence.  The best thing I can do is keep a positive attitute, eat healthy, move my body, and accept love from my family and friends.  I wake up each morning and say "Not today cancer".   Everday I remind myself of that with this poem by Ralph Waldo Emerson - 

“Write it on your heart
that every day is the best day in the year.
He is rich who owns the day, and no one owns the day
who allows it to be invaded with fret and anxiety.

Finish every day and be done with it.
You have done what you could.
Some blunders and absurdities, no doubt crept in.
Forget them as soon as you can, tomorrow is a new day;
begin it well and serenely, with too high a spirit
to be cumbered with your old nonsense.

This new day is too dear,
with its hopes and invitations,
to waste a moment on the yesterdays.”

MelissaJA said:

Hi Julie

In October of last year I also was diagnosed 4b Carcinosarcoma (CS).  I had a hysterectomy, with my tubes, ovaries, 4 sentinal lymph nodes and omentum removed.  I had a large tumor in my uterus, a smaller on on an ovary, a couple on my sigmoid colon, and my pelvic was was inconclusive for microscopic cancer cells but we assume they were there due to the tumors on my colon.   I did 6 cycles of Carbo/Taxol (completed March) and 25 extenal radiation treatments (completed April).  There has been no evidence of disease since the surgery.

Chemo was not that difficult for me but the radiation was.   I want to echo what other have said about getting a port.  I belive it makes things much easier.

The biggest struggle for me has been trying not to spiral down into worry and depression.  The doctors I have spoken to, including Dr. Birrer in Arkansas who is supposed to be a preeminant CS doctor, said the chance of recurrance is most great the 2 years after frontline treatment.  Then there is the 5 year mark which the worry becomes even less.  I use this info to convince myself that CS is not always a death sentence.  The best thing I can do is keep a positive attitute, eat healthy, move my body, and accept love from my family and friends.  I wake up each morning and say "Not today cancer".   Everday I remind myself of that with this poem by Ralph Waldo Emerson - 

“Write it on your heart
that every day is the best day in the year.
He is rich who owns the day, and no one owns the day
who allows it to be invaded with fret and anxiety.

Finish every day and be done with it.
You have done what you could.
Some blunders and absurdities, no doubt crept in.
Forget them as soon as you can, tomorrow is a new day;
begin it well and serenely, with too high a spirit
to be cumbered with your old nonsense.

This new day is too dear,
with its hopes and invitations,
to waste a moment on the yesterdays.”

 

I'm printing that out and taping it over my computer. It so apt for us! Happy to hear that you are NED. May your dance with him go on and on!

To "see" you again.  Thank you for the perfect poem.