Just came from second opinion at Sloan Kettering MMT carcinomasarcoma

2»

Comments

  • nancibee
    nancibee Member Posts: 59 Member
    Teamkelly said:

    Update on Kelly
    After finding out what the clinical trial and ifosamide (3 days and then shots for 10 days) Kelly decided to do carbo/taxol. She asked mewhat I thought and I said "this is your life you have to choose how you want to live it."
    she had her 1st chemo last Thursday and has been great, walking everyday, drinking tons of fluids, only problem so far has been constipation. Question - is the 1st treatment indicative of the rest of treatment?

    Now me, I cannot believe this, I am 56and have not had a period in 5 years, tomorrow is my 57th birthday and I started bleeding tonight, how concerned should I be??

    Bleeding
    I had my last period 10 years ago. I had a normal PAP in January of this year. Then in the beginning of April, I experienced heavy bleeding which gradually tapered off. I was not going to go see a doctor because I figured it would stop on its own. But I decided to see the gynecologist anyway and was surprised when she told me I could have either a transvaginal ultrasound or an endometrial biopsy. I chose the latter. A week later she called to tell me that the results were positive for cancer and that the GYN oncologist would be contacting me. I have UPSC and had a complete hysterectomy on 5/1, 6 rounds of carbo/taxol and will finish my vaginal brachytherapy this Friday in time for my 60th birthday on Saturday.

    When I told my GYN oncologist that I almost did not have my bleeding checked out because it was stopping, she told me that is the nature of endometrial cancer. It tricks women because it stops and they think they are going to be fine.

    It wouldn't hurt to be on the safe side and have your bleeding checked out. Hopefully, it will turn out to be nothing serious. I did not have any problems with the biopsy. I didn't even feel it. I have heard that it can be painful though.
  • jazzy1
    jazzy1 Member Posts: 1,379
    Teamkelly said:

    Update on Kelly
    After finding out what the clinical trial and ifosamide (3 days and then shots for 10 days) Kelly decided to do carbo/taxol. She asked mewhat I thought and I said "this is your life you have to choose how you want to live it."
    she had her 1st chemo last Thursday and has been great, walking everyday, drinking tons of fluids, only problem so far has been constipation. Question - is the 1st treatment indicative of the rest of treatment?

    Now me, I cannot believe this, I am 56and have not had a period in 5 years, tomorrow is my 57th birthday and I started bleeding tonight, how concerned should I be??

    Teamkelly
    In reference to your sister-in-law and her first treatment....generally the first is easier on the body as not cummulative. GENERAL RULE, per my oncologist, as the treatments go, you see more intense side affects. Now...that doesn't mean she'll be in bed or not keeping her food down, just more intense "possibly". Nothing is for sure, but this is a generalization as all our bodies are different and therefore, react to treatments differently.

    In your case with bleeding....see your OB!!! I was pre-menopause and you're post...correct? No one knows until have a test/procedure, then docs are sure. I see way too many gals who have this and see the doc who does nothing...hoping it'll resolve itself. By the time they come back with SAME ISSUE, it has now become serious.

    Good luck and we'll be thinking of you both...
    Jan

    Cancer is not a sentence, it's a word~
  • Teamkelly
    Teamkelly Member Posts: 63
    jazzy1 said:

    Teamkelly
    In reference to your sister-in-law and her first treatment....generally the first is easier on the body as not cummulative. GENERAL RULE, per my oncologist, as the treatments go, you see more intense side affects. Now...that doesn't mean she'll be in bed or not keeping her food down, just more intense "possibly". Nothing is for sure, but this is a generalization as all our bodies are different and therefore, react to treatments differently.

    In your case with bleeding....see your OB!!! I was pre-menopause and you're post...correct? No one knows until have a test/procedure, then docs are sure. I see way too many gals who have this and see the doc who does nothing...hoping it'll resolve itself. By the time they come back with SAME ISSUE, it has now become serious.

    Good luck and we'll be thinking of you both...
    Jan

    Cancer is not a sentence, it's a word~

    Have apptmt with gynecologist
    Thanks Jazzy, went to primary on Thurs., she set me up with the Gyno for this Tuesday. She said they will do an ultrasound and biopsy, but I know with Kelly the biopsy was negative. Do you know what they biopsy? Kelly continues to amaze me, plenty of energy, no side effects, she goes back for 2nd treatment next Thursday, hope this continues.

    Nicki
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Teamkelly said:

    Have apptmt with gynecologist
    Thanks Jazzy, went to primary on Thurs., she set me up with the Gyno for this Tuesday. She said they will do an ultrasound and biopsy, but I know with Kelly the biopsy was negative. Do you know what they biopsy? Kelly continues to amaze me, plenty of energy, no side effects, she goes back for 2nd treatment next Thursday, hope this continues.

    Nicki

    On a more positive note. .
    I can't comment on your sister in laws' situation, but re your post menopausal bleeding, physicians do take it seriously, and I'm glad you did. That being said, even if this should turn out to be cancer, 70% of endometrial cancers are endometroid adenocarcinoma, which if early stage, low grade, often need only surgery. I had this type, Stage 1a, grade 1, a little over 2 years ago, had a hysterectomy, bilateral salpingo-oophorectomy, lymph node sampling and pelvic wash. I needed no further treatments other than follow up exams and Pap smears. I'm now down to 6 month gyn oncology visits. Yes, it's cancer, and yes, it can come back, but the odds are highly in my favor that it won't. I hope this is the case for you - if it's cancer, which I hope it's not.

    Keep coming here for support for both you and your SIL.

    Best wishes,
    Suzanne
  • beila
    beila Member Posts: 97 Member
    Teamkelly said:

    Have apptmt with gynecologist
    Thanks Jazzy, went to primary on Thurs., she set me up with the Gyno for this Tuesday. She said they will do an ultrasound and biopsy, but I know with Kelly the biopsy was negative. Do you know what they biopsy? Kelly continues to amaze me, plenty of energy, no side effects, she goes back for 2nd treatment next Thursday, hope this continues.

    Nicki

    biopsy
    they biopsy the endometrium, the inner wall of the uterus
  • jazzy1
    jazzy1 Member Posts: 1,379
    Teamkelly said:

    Have apptmt with gynecologist
    Thanks Jazzy, went to primary on Thurs., she set me up with the Gyno for this Tuesday. She said they will do an ultrasound and biopsy, but I know with Kelly the biopsy was negative. Do you know what they biopsy? Kelly continues to amaze me, plenty of energy, no side effects, she goes back for 2nd treatment next Thursday, hope this continues.

    Nicki

    Oopsie
    plse excuse this mis post
  • Shell bug
    Shell bug Member Posts: 76
    beila said:

    bleeding
    Dear Teamkelly (?nicki)

    I am so sorry this lousy trick of fate caused you to bleed on the eve of your birthday.

    I hope you are able to enjoy your birthday after you make an appointment with your gynecologist or family MD
    1st step is a pelvic and transvaginal ultrasound
    2nd step is an endometrial BIOPSY

    Do not settle for anything less
    For example, my late beloved mother had post menopausal bleeding with a normal ultrasound
    which turned out to be USPC, which I now have

    Hopefully yours will turn out to be nothing serious,
    but, as we learned in medical school
    "POST MENOPAUSAL BLEEDING IS CANCER UNTIL PROVEN OTHERWISE"

    Happy Birthday
    wishing you negative results,

    Beila

    Thank you for your statement
    Thank you for your statement Beila! I so wish my doctor would have had that stance. I was only 38 and healthy, so she let me bleed profusely for 9 months. I just didn't have the word biopsy and kept trying different birth control pills. Luckily she finally did a biopsy but continually told me there was not way it was cancer. It was.

    I know doctors are only human, but a simple biopsy may have saved me so much heartache. So, again, thank you for being outspoken.

    Rachelle
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    Teamkelly said:

    Have apptmt with gynecologist
    Thanks Jazzy, went to primary on Thurs., she set me up with the Gyno for this Tuesday. She said they will do an ultrasound and biopsy, but I know with Kelly the biopsy was negative. Do you know what they biopsy? Kelly continues to amaze me, plenty of energy, no side effects, she goes back for 2nd treatment next Thursday, hope this continues.

    Nicki

    Had did your appointment go?
    Nicki,
    How did your appointment go? Do they have the results of the biopsy yet? The only problem I have witha a biopsy is, the dr may not hit the right spot to get the sample. Praying that all does go well with you and you get good results. Glad to know that Kelly is doing ok with the chemo. trisha
  • Teamkelly
    Teamkelly Member Posts: 63

    Had did your appointment go?
    Nicki,
    How did your appointment go? Do they have the results of the biopsy yet? The only problem I have witha a biopsy is, the dr may not hit the right spot to get the sample. Praying that all does go well with you and you get good results. Glad to know that Kelly is doing ok with the chemo. trisha

    No results yet, but had procedure/ Kelly had 2nd chemo
    I saw the ob/Gyn on Tues. He did a vaginal ultra sound himself right in his office, saw a 1 cm polyp, scheduled me for an outpatient surgery center on Thursday and He went in with a camera looked all around, removed the polyp (it had a stalk) it was 1 cm wide, 2 cm long. I will get pathology back on this Thurs or sooner. He said my uterine wall was thin and everything else looked good. He told me that 97% of the time these are benign, he said the cramping was coming from my body trying to expel it, which must be true because that has pretty much stopped, but my stomach looks like I swallowed a pumpkin, guess that is the air/gas they used, he could only see one of my ovaries with the ultrasound and it was very small, which he said was good, oh, he also,did a PAP.

    Kelly just had her second chemo and her joints are really aching, she is still walking everyday and works out with her trainer twice a week, I told her to try 3 Motrin and hot tub or bath, do any of you have more suggestions, she had her treatment on Thursday, no nausea, very little constipation, she says the pain level is a 5, I told her maybe she should not work out with trainer this week (she does weight machines to fatique) and just walk. The lab sends me all her lab reports and of course her numbers were starting to drop right before this round, still waiting for CA-125 but not sure how important that is with MMT/carcinomasarcoma.
  • jazzy1
    jazzy1 Member Posts: 1,379
    Teamkelly said:

    No results yet, but had procedure/ Kelly had 2nd chemo
    I saw the ob/Gyn on Tues. He did a vaginal ultra sound himself right in his office, saw a 1 cm polyp, scheduled me for an outpatient surgery center on Thursday and He went in with a camera looked all around, removed the polyp (it had a stalk) it was 1 cm wide, 2 cm long. I will get pathology back on this Thurs or sooner. He said my uterine wall was thin and everything else looked good. He told me that 97% of the time these are benign, he said the cramping was coming from my body trying to expel it, which must be true because that has pretty much stopped, but my stomach looks like I swallowed a pumpkin, guess that is the air/gas they used, he could only see one of my ovaries with the ultrasound and it was very small, which he said was good, oh, he also,did a PAP.

    Kelly just had her second chemo and her joints are really aching, she is still walking everyday and works out with her trainer twice a week, I told her to try 3 Motrin and hot tub or bath, do any of you have more suggestions, she had her treatment on Thursday, no nausea, very little constipation, she says the pain level is a 5, I told her maybe she should not work out with trainer this week (she does weight machines to fatique) and just walk. The lab sends me all her lab reports and of course her numbers were starting to drop right before this round, still waiting for CA-125 but not sure how important that is with MMT/carcinomasarcoma.

    Teamkelly
    Sounds like with your issue it might be nothing. Like the idea of thin uterine wall, as in many cases when our cycle stops the wall gets thicker. Plus your doc sounds quite positive it's benign...ride out the positive vibes from doc.

    Kelly sounds a lot like me...always moving and ready to keep a normalcy. But...with me I learned quickly from an RN oncology friend we need time to rest...especially for few days after chemo. Our bodies are bombarded with toxins and fighting cancer, then adding on lots of fatique with workouts... hard to recover. Our bodies can only do so much...best to keep it strong to fight the cancer battle. Suggest as well taking whey protein powders and drinking lots of fluids. The chemo breaks our systems down and the protein and water help keep it fluid and strong.

    I was a big workout gal and simply learned to take 3-4 days after chemo to rest. If I felt up to it, walk a bit outside for some fresh air and change of scenery.

    CA 125 is a tumor marker and not everyone can use for guidance. Luckily in my case doc can as it was very high priot to chemo 550 and after EACH chemo it fell and stayed at the low of 4-6. But...as with anything we still follow other tests/scans.

    Keep your chin up as sounds like things are falling into place for both of you. Who said life would be easy?

    Hugs,
    Jan
  • Teamkelly
    Teamkelly Member Posts: 63
    jazzy1 said:

    Teamkelly
    Sounds like with your issue it might be nothing. Like the idea of thin uterine wall, as in many cases when our cycle stops the wall gets thicker. Plus your doc sounds quite positive it's benign...ride out the positive vibes from doc.

    Kelly sounds a lot like me...always moving and ready to keep a normalcy. But...with me I learned quickly from an RN oncology friend we need time to rest...especially for few days after chemo. Our bodies are bombarded with toxins and fighting cancer, then adding on lots of fatique with workouts... hard to recover. Our bodies can only do so much...best to keep it strong to fight the cancer battle. Suggest as well taking whey protein powders and drinking lots of fluids. The chemo breaks our systems down and the protein and water help keep it fluid and strong.

    I was a big workout gal and simply learned to take 3-4 days after chemo to rest. If I felt up to it, walk a bit outside for some fresh air and change of scenery.

    CA 125 is a tumor marker and not everyone can use for guidance. Luckily in my case doc can as it was very high priot to chemo 550 and after EACH chemo it fell and stayed at the low of 4-6. But...as with anything we still follow other tests/scans.

    Keep your chin up as sounds like things are falling into place for both of you. Who said life would be easy?

    Hugs,
    Jan

    Yeah, it was just a polyp 1 cm wide, 2 cm long, everything else looked great.

    Kelly is having third chemo this Thursday, still going strong, no real symptoms, food taste fine, very few aches, has not needed anti nausea mess. Her blood work did show that she needs to avoid crowds and stay at home more, so she did not go to the mall and will not go to church today, but overall she could not be more pleased. Thanks for the heads up on the rest Jazzy, I always encourage her to listen to her body, but will remind her again after Thursday. she has always had a whey shake for breakfast, and continues to do that, she also drinks a ton of water and some recommended juices everyday.
  • Teamkelly
    Teamkelly Member Posts: 63
    jazzy1 said:

    Teamkelly
    Sounds like with your issue it might be nothing. Like the idea of thin uterine wall, as in many cases when our cycle stops the wall gets thicker. Plus your doc sounds quite positive it's benign...ride out the positive vibes from doc.

    Kelly sounds a lot like me...always moving and ready to keep a normalcy. But...with me I learned quickly from an RN oncology friend we need time to rest...especially for few days after chemo. Our bodies are bombarded with toxins and fighting cancer, then adding on lots of fatique with workouts... hard to recover. Our bodies can only do so much...best to keep it strong to fight the cancer battle. Suggest as well taking whey protein powders and drinking lots of fluids. The chemo breaks our systems down and the protein and water help keep it fluid and strong.

    I was a big workout gal and simply learned to take 3-4 days after chemo to rest. If I felt up to it, walk a bit outside for some fresh air and change of scenery.

    CA 125 is a tumor marker and not everyone can use for guidance. Luckily in my case doc can as it was very high priot to chemo 550 and after EACH chemo it fell and stayed at the low of 4-6. But...as with anything we still follow other tests/scans.

    Keep your chin up as sounds like things are falling into place for both of you. Who said life would be easy?

    Hugs,
    Jan

    Yeah, it was just a polyp 1 cm wide, 2 cm long, everything else looked great.

    Kelly is having third chemo this Thursday, still going strong, no real symptoms, food taste fine, very few aches, has not needed anti nausea mess. Her blood work did show that she needs to avoid crowds and stay at home more, so she did not go to the mall and will not go to church today, but overall she could not be more pleased. Thanks for the heads up on the rest Jazzy, I always encourage her to listen to her body, but will remind her again after Thursday. she has always had a whey shake for breakfast, and continues to do that, she also drinks a ton of water and some recommended juices everyday.

    Thanks,
    Nicki
  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    Teamkelly said:

    Yeah, it was just a polyp 1 cm wide, 2 cm long, everything else looked great.

    Kelly is having third chemo this Thursday, still going strong, no real symptoms, food taste fine, very few aches, has not needed anti nausea mess. Her blood work did show that she needs to avoid crowds and stay at home more, so she did not go to the mall and will not go to church today, but overall she could not be more pleased. Thanks for the heads up on the rest Jazzy, I always encourage her to listen to her body, but will remind her again after Thursday. she has always had a whey shake for breakfast, and continues to do that, she also drinks a ton of water and some recommended juices everyday.

    Thanks,
    Nicki

    Watch the polyp
    I am so happy it was just a polyp - but be warned polyps turn to cancer so make sure they remove the polyp and that you continue to get regular checkups including trans-vaginal ultrasounds to ensure no future polyps form.
    Wonderful to hear someone has escaped this nightmare!
    JanH
  • debrajo
    debrajo Member Posts: 1,095 Member
    Teamkelly said:

    Yeah, it was just a polyp 1 cm wide, 2 cm long, everything else looked great.

    Kelly is having third chemo this Thursday, still going strong, no real symptoms, food taste fine, very few aches, has not needed anti nausea mess. Her blood work did show that she needs to avoid crowds and stay at home more, so she did not go to the mall and will not go to church today, but overall she could not be more pleased. Thanks for the heads up on the rest Jazzy, I always encourage her to listen to her body, but will remind her again after Thursday. she has always had a whey shake for breakfast, and continues to do that, she also drinks a ton of water and some recommended juices everyday.

    Thanks,
    Nicki

    That is great news on Kelly!
    That is great news on Kelly! Hoping she continues to do well!

    I agree with Jan-in-Ontario though about the polyp. Would you consider a complete hysterectomy? I know, it's drastic, but I had much the same, just a polyp,bleeding,into menapause,no big deal. Fast forward a few years and while polyp is still the and inflamed, next to it and on it...UPSC. I begged for a hysterectomy from the first, but no, "healthy organs", ect. Probably no connection, but Had I pushed it would have saved so much. I know it may not be correct but I am of the school of"if you don't need it and it's giving you trouble, get it out"! Ok, I'll stop preaching and let you enjoy your good news! Best, Debrajo
  • janh_in_ontario
    janh_in_ontario Member Posts: 151 Member
    debrajo said:

    That is great news on Kelly!
    That is great news on Kelly! Hoping she continues to do well!

    I agree with Jan-in-Ontario though about the polyp. Would you consider a complete hysterectomy? I know, it's drastic, but I had much the same, just a polyp,bleeding,into menapause,no big deal. Fast forward a few years and while polyp is still the and inflamed, next to it and on it...UPSC. I begged for a hysterectomy from the first, but no, "healthy organs", ect. Probably no connection, but Had I pushed it would have saved so much. I know it may not be correct but I am of the school of"if you don't need it and it's giving you trouble, get it out"! Ok, I'll stop preaching and let you enjoy your good news! Best, Debrajo

    Same here
    I had polyps and ended up with cancer too... so be careful.
    JanH
  • Cindykb
    Cindykb Member Posts: 2
    Carcinomasarcoma

    I am new to this and also newly dia with mmmt carcinomasarcoma 

    i only see posts from 2012. Are there no current posts??

  • cmb
    cmb Member Posts: 1,001 Member
    Cindykb said:

    Carcinomasarcoma

    I am new to this and also newly dia with mmmt carcinomasarcoma 

    i only see posts from 2012. Are there no current posts??

    Search board again or start new topic

    Cindykb,

    There are other current members of board, including myself, who have uterine carcinosarcoma or MMMT cancer. But if you searched for  carcinomasarcoma" you wouldn't have found many posts other than this one since there is a typo in the title of this topic (there is no middle "m" in carcinosarcoma).

    You can read about me and my experience with this cancer by clicking on my user name (cmb) under my picture in the blue box. You can also try searching the topics again with "MMMT" or "carcinosarcoma" as keywords.

    In the meantime, welcome to the site, although we're sorry that you had to join us. Please feel free to start a new discussion topic to introduce yourself to the rest of the board. New posts added to old topics like this one can sometimes get overlooked. See "Add a new forum topic" at the top of the topics list.

    Many member here will be happy to answer any questions you have or share their experiences, even if they don't have MMMT.

  • janaes
    janaes Member Posts: 799 Member
    Hi ,  i was diagnosed with

    Hi ,  i was diagnosed with MMMt uterine cancer stage 2 grade 3 may of 2016. I have hade No Evidence of Desease since. I liked what cmb said. We are a group of women here who really support eachother. I would suggest a new thread for you also. 

    Welcome. I am glad you found us. I would agree also this is a place to asked any questions. This board was a life saver for me when i was first diagnosed and while going through treatment.

    I hope you find peace as you go forward