Newly diagnosed

ingridjee said:

MMMT stage three same treatment
Thank you Trish for sharing.
I am going through the same treatment, same stage, same operation, from 7 lymph glands 1 was cancerous but had it also on the right tube and ovary, and the cervix.
They said it is aggressive and thus I need aggressive treatment.
Now one more round of chemo - I did not get a break on tiredness, bad mouth taste, bone pain. I also had allergic reaction to chemo and take it with steroids. In one month I have chemo and then maybe one good week after chemo of feeling well .
I wonder how is radiation, some people say side effects are less than chemo . Well, I guess I will know.

I am taking a day at the time, afterall it is almost impossible to plan anything but I do feel lots of uncertainty, specially because even though I work at home, I feel too tired to work, an I have sore throats and cannot speak on the phone. The STD pays dirt and I wonder if I could go back to work after radiation or even with radiation!

Thanks for sharing!

Radiation...
I have MMMT as well. Had 3 rounds of chemo, now I'm getting radiation (25 rounds) which will be followed by three more rounds of chemo. I work full time (though I still have my disability just in case) and have had no issues so far with the radiation. I've only had 8 treatments though and from what I understand side effects take a couple of weeks to show up. That said it sounds like diarrhea and fatigue are the most prevalent of the side effects, so hopefully it won't be too bad. I'll post again, if the side effects become too bad.

Good luck and take care.

Cindy

ybrlabs said:

Surgery Tuesday
My surgery is scheduled for Tuesday. I'm scared of what they might find but I'm hoping knowing who or what I'm fighting will take away some of my fear. I am now thinking every sniffling nose and cough is a symptom I missed. I have a couple of swollen lymph nodes in my groin that are freaking me out. Of course they are located right where I have the bruise from my horse kick. I'm afraid I may cause even more anxiety for my husband.

On a happy note, I got a cute short hair cut today and it was fun to step back and not worry.

Thanks for the continued support


Sandy

For Sandy and for Trish
Hi Sandy - I went through this just a couple of weeks ago. Had a laparoscopic hysterectomy last month for a fibroid, recovery was fast but the path reports came in with UPSC. I've been in a state of semi-denial since then which actually helps a bit.

I had surgery on 11/7 to remove the cervix, top 1/3 of vagina, ovaries, tubes, nodes and omentum. Was in the hospital for 5 days - pain control was the biggest issue for me. Morphine and Benadryl combo helped but the best was Torodol - like a miracle drug.

Got home on 11/12 and swelled up like a balloon all over. Not sure if it's just a normal side effect from surgery (had a similar situation after the hyst but that went away after a couple of days) or lymphedema but it's starting to get better. However on 11/17 I rushed to the onc and found out my incision is infected. Grrrr. I'm on powerful antibiotics and things are starting to improve again. I was supposed to have staples out this week but the infection's delaying that. Not sure what the chemo/radiation schedule will be - that's next on the agenda to discuss with the onc.

Do what feels best for you. Ask for help. Leave your modesty at the door

Trish - I'm in Irving and have been treated at Medical City. Are you close by?

Hugs to all from Liz in Dallas

ingridjee said:

MMMT stage three same treatment
Thank you Trish for sharing.
I am going through the same treatment, same stage, same operation, from 7 lymph glands 1 was cancerous but had it also on the right tube and ovary, and the cervix.
They said it is aggressive and thus I need aggressive treatment.
Now one more round of chemo - I did not get a break on tiredness, bad mouth taste, bone pain. I also had allergic reaction to chemo and take it with steroids. In one month I have chemo and then maybe one good week after chemo of feeling well .
I wonder how is radiation, some people say side effects are less than chemo . Well, I guess I will know.

I am taking a day at the time, afterall it is almost impossible to plan anything but I do feel lots of uncertainty, specially because even though I work at home, I feel too tired to work, an I have sore throats and cannot speak on the phone. The STD pays dirt and I wonder if I could go back to work after radiation or even with radiation!

Thanks for sharing!

Don't Worry about Radiation ...

Dear Ingridjee,

I too was diagnosed with your form of cancer albeit stage IB and clear lymph nodes.
Had the same treatment (am finished with it all) and had no side effects from the pelvic radiation--perhaps because my integrative doctor asked me to take 90 mgs of zinc chelate a day (a high dose but OK if just temporary) throughout treatment to protect lining of my intestines. Also took two teaspoons of fish oil a day and shark-liver capsules (two a day) to protect intestines. He also recommnded curcumin - 500 mgs x 3 a day.

Best,
Rosey

ybrlabs said:

Back home
I had my surgery on the 22nd as planned and came home today. The good news is that the doctors could not find anything abnormal with a visual look. They removed a large section of Omentum, my appendix, lymph nodes, uterus, ovaries, and Fallopian tubes. Dr Abbas andDr Zucker saw nothing abnormal. We won't have the biopsy results for 7-10 days. I'm actually hoping something is found because what if nothing appears? Where did the papillary serous cells originate.

I'm recovering as expected. Feeling pretty bloated but I can work thru this. I have to give myself the anti-DVT shots in the morning and am nervous about that.

Thanks for all of the positive thoughts and prayers!

Sandy

Anti dvt shots
Hi Sandy,

Just read all of your posts. I agree with others, it is hard waiting for biopsy results. It is a strange time all round dealing with cancer. Try to rest and let others help you. You will heal better if you take things gently.

With giving shots, I was also a bit squeamish even though I am an RN and have given many hundreds of injections to others. I just kept to a ritual with my own shots. Tried not to think of it as my body (a bit of disassociation!) and also told myself that it was helping to keep me well.

It must have been difficult for you talking to your daughter.

Thinking of you,
Georgia

Hi Sandy,
I am glad to see
Hi Sandy,

I am glad to see you are getting wonderful support from this sight. Hang in there! I am also having anxiety from "not knowing" what tyoe of cancer I have. This cancer escaped detection by a Pap smear I just had done 6 weeks ago so I am puzzled that I now have a once inch half solid, half fluid mass growing in my uterine wall. I went into the ER with severe abdominal distress and wished I had appendicitus rather than this. I am a busy professional and can't afford this crisis now. I hope I can remain active while I have treatment.

txtrisha55 said:

shots
The shots, I could not do them myself, I got my daughter to do it as I am really bad when it comes to needles. My daughter was squimish at first but she got better. She freaked if I made a sound though so I tried not to. When I was in the hospital the nurses did it but at home my daughter had to do it. I tried to do it once but I could not do it after that she had to. If you have someone that you trust maybe they can help. Take it easy during recovery. trish

Trisha, giving yourself shots is not easy
I am a nurse. When I was pregnant I needed B 6 shots for severe nausea. I had a terrible time giving myself those shots. Even is I got the needle in my leg, I would have a hard time injecting the Medicine because it burned so bad. Luckily I had nurse friends that would give me the shots.

txtrisha55 said:

Surgery & recovery
I can talk a little bit on this even though I did not have USPC, I was diagnosed with Malignant Mixed Mullerian Tumor (MMMT). The tumor itself was 5.5x5 cm and a 1A in the uterus but they found two microscopic cells in 1 lymph node and bumped it up to a stage 3c. I had the abdominal hysterectomy/exploratory 8 April 2011. The Gyn Onc Dr said surgery would last 5-6 hours but only lasted 3.5. The moving to regular room after recovery was hard as they wanted me to move from gurney to bed. I had 1 large man and 1 tiny nurse to help move me. Not fun, hurt really bad. But after I got settled Morphine push was nice. The next day the nurses told me I had to get up and set in a chair. Friends that had hysterectomies before told me to put a pillow on my stomach and push down as you tried to get up as it would help. They told me that the pillow would become my best friend during recovery. IT did work and I continued doing that for about 4 weeks after surgery, used it in the car too. The nurses had goals for me every day and would write them on a white board. Get up sit in chair, go to bathroom, walk the halls, take a shower (with nurse help), go for longer walk, etc. They also gave me a tubey thing to work on my breathing so my lungs did not get fluid build-up in them. You would put it in your mouth and breathe in and had to move the internal ball up to a certain number. I had to do this for 15 minutes times 3 times a day. They kept moving the number up too!
I basically took myself off the morphine as I did like it but made me goofy. I kept till Sunday. Get ready to lose all sense of modesty as I was UT Southwestern Hospital were they also do teaching, so lots of Fellow Drs come in and out of room and check you out. They came in the AM and in the PM. I stayed the Hospital for 7 days Friday night till Friday morning. I went home with staples and a drain bag. I had tubes, ovaries, cervix, uterus, 14 lymph nodes and the omentum removed. I stayed off work for 8 weeks for surgery. Four weeks after surgery started Chemo (carbo/taxol combination) on 6 May. Every 21 days for 6 treatments ended 22 August. Hair fell out 25 May. I think the funniest was that my nasal hair fell out too! How can a person try to avoid getting sick when they have no protection against breathing in germs up their noses. I did not understand that. I chose not to do a wig, in Texas in the summer is HOT (we broke the record of hottest days in summer this year) so could not wear hats or scarves, I sweated too much. I just went bald back to work and out in public.
I am NED as of 12 Sep when I had my first CT scan after all the chemo. My CA125 was 15 before surgery, went to 169 before chemo but it dropped each chemo treatment till now it is 19 as of Sep. I go back for another CT scan 22 Nov and blood work 2 Dec then see the GynOnc Dr on 5 Dec.
Trying to change diet and exercise more, the change in diet is hard to break after 55 years of eating what I wanted. Maybe that is why I got the cancer, but there are healthy people on this site that got it too, so only God knows. Just remember that He is there to help carry you through this journey. There is a lot of information on this site and a lot of women to help answers questions and help with support if you need it.
trish

MMMT, CarcinoSarcoma, Surgery, recovery and the future
I had 'radical' hysterectomy on 14 November - just over 2 weeks ago and have carcinosarcoma - used to be called MMMT. Someone recommended the MD Anderson Center in Texas - though we have good facilities in London (England, where I live) but I would travel if there were reason to. Chemo - 6 rounds - scheduled, followed by 25 sessions of pelvic radiation. Just not sure whether the poisoning of the body and the burning of it to protect it for the future is the best possible way forward. Any ideas, anyone? Joan

CindyGSD said:

Funny...
Whenever anyone asks what kind of cancer I have, I say..."not the good kind". I think it's funny, but I'm not sure everyone does.

Cindy
MMMT (carcinosarcoma) Stage 2 high grade.

Funny....
People look at me somewhat tenderly, as they ask how I am..... I say cheerily, 'I'm great, thanks, how are you'? Hope it diffuses the sympathy (though I do appreciate it). They clearly think I am dying - but I don't - even though I had breast cancer earlier this year and a mastectomy, and now endometrial carcinosarcoma and hysterectomy. Wow, sounds terrible, doesn't it, but honestly, nothing hurts except the surgery wounds a bit..... Good luck all, Joan