MMMT

It happened to Me said:

Welcome KayBB

This is a great group of women who have a vast knowledge of alot of things.  I don't have MMMT either but was diagnosed with UPSC (like Roberta) Stage IIIA in July, 2013.  I had a hysterctomy (took uterus, tubes, ovaries, cervix).  It had already spread to the paracolic gutter, left ovary and a pea sized tumor on the back of my pelvis.  I had 6 rounds of carbo/taxel.  1 round every three weeks.  The doctor didn't believe that radiation would benefit me.  I was 51 when diagnosed.  I am currently 10 months past chemo. and am NED (No Evidence of Disease).

Cancer is a scary thing.  However, it doesn't define us.  We are stonger than that.  I was told early on, only focus on what you know is fact and only look to the next event or the next appointment.  Don't look at the end because it's a very long journey.  We take things day by day.  It changes your perspective on life. 

Humor is very important and your attitude is equally important.  I tried to make a bad thing fun if that makes any sense.  If you can journal or blog, that tends to help too.  I agree with the other ladies. 

These ladies will answer all your questions to the best of their knowledge.  You can laugh, cry, vent etc..  You have a group of ladies who understand because we have been there. 

Jeanette

August 2007. Aged 66  Excellent health! Bleeding first sign.   Stage 3/4 carcinosarcoma of endometrium with pelvic and para-aortic lymph nodes and bladder metatstases.

Today.  No recurrance.  My advice...do not research [many would disagree] and stay positive.   I wish you well.

Teamkelly said:

MMMT /Carcinomasarcoma

Hi Kay, my name is Nicki I post for my sister in law Kelly. Kelly was diagnosed in August 2012 stage 3C. Kelly had ignored bleeding for almost a year when diagnosed. It was through the wall of the uterus, and one ovary, several lymph nodes, there were cells in her abdomen when they did a wash. I don't remember all the details but if you go and look for my name and look for past post you may be able to find all the details. She had carbo taxol  then radiation. She has had recurrence and is currently doing experimental treatment at a sarcoma treatment center in Southern California where she lives. Kelly was 65 when diagnosed, she is a very young 67 and remains active. Kelly is a very strong Christian and her faith is the mainstay of her life.

Kelly did go to Sloan Kettering for a second opinion when diagnosed, basically they confirmed her diagnosis and treatment plan in SC, her doctor would not do an assay of her cancer, even though she asked multiple times, when he ran out of treatments for her then he suggested an assay (basically this takes your cancer cells and matches it to treatments to see which work best), why he refused to do it in the beginning when asked I will never know.

if you are in a state that has medical marijuna I highly recommend it, it has helped Kelly to sleep and eat.  MMMT is now called uterine carcinomasarcoma, if your doctor is not using this lingo, I would question his knowledge, in 2012 the doctors that study this cancer agreed that this is what it is to be called.

Kelly had no problem with chemo, she had six rounds, she continued to workout and walked most days, she was never sick, just tired, radiation was different she took lots of supplements to protect from neurothrophy (sp), had more fatigue and a little loss of appetite.

i do not check this board that often, you could contact me at riknick29@gmail.com and I will try to answer questions. The ladies on here are a good source of support and information, you might try posting with the subject of uterine carcinomasarcoma which may attract more people with your cancer.   Nicki

 

Welcome, KayBB, but I would much prefer meeting you under more favorable circumstances. I am sorry you are facing this cancer diagnosis, but I can assure you that the chemo is not so bad, thanks to the drugs that are delivered along with the chemo drugs. I can't tell you about the radiation treatment, but others here can address that part of the treatment. You can do this Kay even when your heart just simply isn't into it. Believe me, you will grieve the loss of your health and the self-image that you once had; but this too will pass. That's not to say that I embrace cancer, but I've made room for it. It's like sitting in a crowded bus and making room for a stranger to sit next to you. It's never comfortable but it's not a stabbing pain, either. You can search here by keywords such as carcinosarcoma or MMMT. I did, and there is a wealth of information about this rare uterine cancer. Try to be gentle with yourself whenever possible. Treat yourself with the same gentle kindness and unconditional love you would bestoy on your very closest friend facing a similar circumstance. 

Please keep us posted with your progress.

Warm Wishes,

Cathy

Hi there,

I had a very aggressive and rare form of undifferentiated small cell uterine carcinoma 5 years ago when I was 50.  I had chemo and radiation treatments simultaneously, then internal radiation, surgery, then follow-up chemo.  Seems like a very long time ago now, I am doing great.  Here's my advice, in case it's helpful:

1. Forget the internet research studies until you are well through treatment.  Most of the stuff is out of date.  Especially the survival statistics.  I'm glad I didn't know how abysmal the survival rates were for my cancer until I was past the big treatment stuff.  I paid attention to what my doctors and nurses said, and that was the most information I could handle at the time. 

2. Don't worry if you need a port.  I had one for about a year, it saves your veins since one has so many chemos, transfusions, etc.  I didn't like having it and was glad to have it removed later, but it was an important tool to have for treatment.

3.  Don't worry if you need transfusions throughout treatment, I learned that's kind of par for course as white, red blood cells tank due to the treatment.

4.  I felt crummy during treatment, but looking back it is hard to know what contributed to that - weakness from the cancer, affects of radiation, affects of chemo, menopause, aging, etc.  But it certainly improved after treatment!  But it was a gradual thing, do give yourself time.  I felt very run down when I returned to work - but my doctor found that my thyroid tanked, not sure if the chemo-radiation caused this, or it just happened.  So keep going to your doctors and doing labs and scans and such after treatment, that will help you in the long run.

5.  No one in my whole family had this.  Initially I felt I failed somehow, and that my body let me down horribly.  But one grows from experiences.  I now feel very, very lucky to be here.  I learned I am stronger than I thought, never having been tested before like this.  I also learned from others I've met, co-workers, friends, etc. that cancer touches a lot of people.  You are never truly alone.  This website shows this as well.  Give yourself time to grow, and know that you can help others if the opportunity arises.

6.  It's do-able.  :0)

Susan

KayBB said:

Thank you for sharing

Sorry also having to meet you under these circumstances but also grateful that you women are here to know what to expect and your support.  I went through my first chemo and so far I feel good but a little tired but will rest today.  Can you tell me a little about the radiation and what to expect.  Yesterday it was a 5 hour chemo and I go back every three weeks (two more chemo) and rest for two week and then radiation.  What to expect and any suggests what to do after treatment.  I will have five weeks Monday though Friday.  Little fear but it is the unknown of what to expect.  Happy Birthday and thank all you women for the encouragement and hope.  I haven't discussed about the port yet but will talk it over with my doctor.  Thank you again

KayBB you are so sweet to stop to answer each of us, really, this is a fluid conversation and everyone understands if you reply to one of us, we know you are talking to all of us

I saw you write something about a port.  Everyone does that differently.  Some people get them and some don't.  I didn't and I remember after my first chemo I thought, "That wasn't so bad!" and I said to the nurse, "we will have to remember that spot for next time!"  (the spot being where they stuck me)  She said chemo hardens your veins so without a port they have to find a new place to poke you every time.  Having small veins didn't help, so I really only had a problem finding a vein once.  It was the third one and then my onc hoped that the break with the radiation would give them a rest.  (a lot of women have 3 chemos after the radiation - it is called a "sandwich treatment" - chemo, radiation, chemo)

No one talked about chemo brain as far as I see. It is just complete blanking out.  It hit me after my chemo, kind of like a fog, but it gets better.  I think a lot of women still have remnants of it, and there are times I have my moments, but again, it does get better.

Radiation freaked me out, but it really was ok.  You don't feel anything.  There is external radiation and they make a body mold with a bag of beads vaccumed around you and you lat there.  I don't know about the other women, but I had IMRT (super digital type radiation) and had to insert what looked like a glow in the dark dialator for every treatment.  No one had told me in advance so when the two male techs showed it to me and asked if they wanted me to do it I told them I would but this should have been explained to me in advance (to this day I don't really care for the radiologist I had).  Ha!  I did take them with me half way through and joke with my friends about making Christmas "icicles" for my friends front porch!

I did talk with a dietician who works with cancer patients and that was worth the money to me since it wasn't all covered by my insurance.  I would recommend, if you don't already, taking probiotics especially during radiation.  She gave me a study of 400 cervical cancer patients, 1/2 that took probiotics and 1/2 that did not.  The results were DRAMATIC.  I can't even imagine a barbaric study like that to see how women who did not take probiotics had such severe diarhea that they were hospitalized from dehydration.  I have been taking it for years, and when I showed the dietician the type I take "Accuflora" she said it has both types of good 'guys' in the pills.  I don't tell you that to scare you,  you can do this, and you can help yourself. 

I think most women here would tell you radiation is exhausting.  I have never been so exhausted in my life.  Other than two weeks off after surgery and the 6 chemo days, I worked through it all.  I remember sitting at my desk and just thinking, "wow, I just can't move".

A lot of us have internal radiation too.   (I should have kept count of how many people looked at my private parts!!!) I remember not being told about this until I sat down with my radiologist and I was not happy.  Internal radiation depends on what type of cancer you have, you may not have it.  I know I asked my radiologist why did I need it if I don't have the EQUIPMENT.  Again, it was because of the type of cancer I had.

Ok, I have been writing too long!  LOL!!  I am sure the other women will chime in.  You can do this.  One step at a time.  It seems like such a mountain to climb but you will amaze yourself.  We are here to help.

I am a 3 year survivor of mmmt. I did not have any radiation as my dr was savinf that for if it came back. They did remove everything plus ten lymph nodes back in 2011. So far so good. I did have six chemo treatments. It is doable. Keep a positive attitude and take one day at a time. Trish

KayBB said:

Thank you for sharing Trash

In the beginning I was so afraid and I have to be truthful there are times I still am.  I know that God is giving me strength and courage to fight this.  I have to much to live for.  When the fear comes, I come to this web site and it helps a lot knowing that I am not alone.  I have faith that I can fight this and I thank each of you ladies for sharing.  I have a great support group here in North Carolina that are here for me and I for them.  I feel blessed and try to have a positive attitude.   Yesterday was a beautiful day with my family that I haven't seen for sometime.  Tired today but going to rest.  Thank you again Trish

Hello everyone!

After I finished my 6 rounds of chemo (and I had pneumonia 3 times during treatment so it took a bit longer to finish up the chemo because you can't receive chemo while ill with pneumonia) I was told I had a lymphocele by my oncologist and that it wasn't cancer.  However, when I went to see the radiologist he told me "we have to ASSUME this is PROBABLY cancer and had me talked into 35 external and 3 internal treatments.  He did not volunteer information about using a dilator I knew to ask because of the research I had done, also I was frightened of vaginal atrophy and bladder, bowel and kidney issues.  When I talked to my son who, at the time was 29 years old he said "Mom! Assume and Probably don't belong in a doctor's vocabulary.  Get a second opinion, another test, a biopsy anything dut don't take all that radiation if you don't need to".  I called my gyn/oncologist and told him what the radiologist had said and between the two of them decided I should have a PET scan.  When I did the PET scan was normal and I elected not to take any of the radiation treatments as it would have only offered a 7% reduction in the possibility of recurrence. If I had listened to that radiologist I would have gone through all that treatment for nothing.  Question, question, question, anything that doesn't seem right to you! Cancer is so scary, you need God, friends, family and a sense of humor.  I was not married at the time and did not have the support that I needed from a man I had been dating for 6 years but I did have support from many of my female friends and relatives.  I am now 3 1/2 years NED! Had USPC 3A,grade 4.  The radiologist told me we're trying to save your life, I think he was more interested in padding his wallet, sorry but I'm cynical!

Hi Ladis. I am new. I was diagnosed with Ovarian MMMT last Oct, 2014. Stage 3c. I don't here many people having the Ovarian type very often. It is treated slighly different than the uterine mmmt. I was told that Ovarian is even more rare than the Uterine. I am 57 years old and had always been in good shape and good health. I never had even a cold before this. It's very hard to understand why people get this.My onocoligist even told me I was not the typical cancer patient. Everything you read about this I had already did all the precautionaries. Like having at least one child, hysterectomy, not over weight, active and so on. My Dr. couldn't give me any answers. I have gone through the 6 chemo treatments rather easily. The only negative outcome was neuropathy in my feet. And I gained weight. I go every 3 months for a CT, bloodwork, and physical examination. I do have two spots on my lungs that are being watched. I did have a spot on my spleen being watched and it had gotten larger so last time instead of a CT I had an ultrasound. It was gone! I was told more than likely it was a cyst. I feel pretty good. In Dec. my body has started aching for no reason. Just areas at diferent times. I will be asking about that at my next visit. Bu if I have to live with that discomfort I don't care. As long as it's not this cancer. So this is me and my life. I hate hearing of other people having this but it is also nice to have somebody to talk to who understands. I hope everybody is doing well.