Are there any other MMMT survivors out there?

1356719

Comments

  • aochime
    aochime Member Posts: 1
    Cynthia7 said:

    MMMT
    Am 71 and diagnosed in April with Stage 4B MMMT. Had complete hysterectomy & now undergoing chemo. Treatment is Taxol & Carboplatin. After 2nd chemo treatment CA 125 test went from 330 to 87 so apparently it is working and ascites seems to be drying up as well. Having problems keeping white cell count up but other than that doing ok.

    All the information I read about MMMT is so negative & discouraging it is very helpful to read about those who have the same diagnosis & are doing well.

    Let me know how doctors decide to treat your grandmother.

    Hello,
    My mom was diagnosed

    Hello,

    My mom was diagnosed with MMMT stage 3 and we are very scared and not really sure what to do. My sister told me to do some research and find other women in her age group that are beating this. I read your comments and if its possible, we would like to communicate with you. You can reach me at [email protected]

    Thank you,

    Anthony
  • jazzy1
    jazzy1 Member Posts: 1,379
    nempark said:

    Kris and everyone on this thread
    Hi guys: Please write and let us know how you are doing in treatment. Be well everyone. J

    My doc
    I had my follow-up with my radiation oncol today. All is well with me as had my last treatment July /09. I did ask him again about my aggressive type cancer (MMMT) and he explained it has a lot of the same features (??) as ovarian, but is truly uterine. He told me yes it can move around to other body parts/organs, but so many other cancrs will also do the same. No one knows...

    My take -- do our part in healing our insides out with proper foods, vitamins, exercise and mind-altering exercises. All of this we have control of, but not the cancer.

    So great to read about many of us with this same cancer, are many years out from treatments.

    Go have a great day ladies....and keep fighting -- we can win!!
    Jan
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    My doc
    I had my follow-up with my radiation oncol today. All is well with me as had my last treatment July /09. I did ask him again about my aggressive type cancer (MMMT) and he explained it has a lot of the same features (??) as ovarian, but is truly uterine. He told me yes it can move around to other body parts/organs, but so many other cancrs will also do the same. No one knows...

    My take -- do our part in healing our insides out with proper foods, vitamins, exercise and mind-altering exercises. All of this we have control of, but not the cancer.

    So great to read about many of us with this same cancer, are many years out from treatments.

    Go have a great day ladies....and keep fighting -- we can win!!
    Jan

    Thanks Jan
    Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    My doc
    I had my follow-up with my radiation oncol today. All is well with me as had my last treatment July /09. I did ask him again about my aggressive type cancer (MMMT) and he explained it has a lot of the same features (??) as ovarian, but is truly uterine. He told me yes it can move around to other body parts/organs, but so many other cancrs will also do the same. No one knows...

    My take -- do our part in healing our insides out with proper foods, vitamins, exercise and mind-altering exercises. All of this we have control of, but not the cancer.

    So great to read about many of us with this same cancer, are many years out from treatments.

    Go have a great day ladies....and keep fighting -- we can win!!
    Jan

    Thanks Jan
    Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June
  • nempark
    nempark Member Posts: 681
    nempark said:

    Thanks Jan
    Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June

    j
    j
  • jazzy1 said:

    My doc
    I had my follow-up with my radiation oncol today. All is well with me as had my last treatment July /09. I did ask him again about my aggressive type cancer (MMMT) and he explained it has a lot of the same features (??) as ovarian, but is truly uterine. He told me yes it can move around to other body parts/organs, but so many other cancrs will also do the same. No one knows...

    My take -- do our part in healing our insides out with proper foods, vitamins, exercise and mind-altering exercises. All of this we have control of, but not the cancer.

    So great to read about many of us with this same cancer, are many years out from treatments.

    Go have a great day ladies....and keep fighting -- we can win!!
    Jan

    Doing our part
    Hi,
    I am a 52-year-old athlete that was diagnosed with ovarian cancer stage 4 MMMT in November 2009. That was almost a year ago, and after surgery, immediate chemo, and lots of exercise, supplements, sugar-free eating, tons of water, prayers, and good attitude.....i recurred pretty quickly. So disappointing! But as Jazzy1 said, I think if I had not tried so hard to get back to my normally healthy self, I wouldn't now be so strong and ready to fight again as I start my second chemotherapy. I still bike and hike, garden and work, and never felt better. Hard to believe I actually had more tumors growing all this time that I thought I was in remission. My oncologist said 10 years ago these heavy-duty meds weren't even available, so I'm tickled to be alive. "Chemo is our friend," I keep quoting, even though it is killing me; so that I can keep living! Wow what a rare disease, isn't it! How in the world did any of us end up with this?
  • nempark
    nempark Member Posts: 681

    Doing our part
    Hi,
    I am a 52-year-old athlete that was diagnosed with ovarian cancer stage 4 MMMT in November 2009. That was almost a year ago, and after surgery, immediate chemo, and lots of exercise, supplements, sugar-free eating, tons of water, prayers, and good attitude.....i recurred pretty quickly. So disappointing! But as Jazzy1 said, I think if I had not tried so hard to get back to my normally healthy self, I wouldn't now be so strong and ready to fight again as I start my second chemotherapy. I still bike and hike, garden and work, and never felt better. Hard to believe I actually had more tumors growing all this time that I thought I was in remission. My oncologist said 10 years ago these heavy-duty meds weren't even available, so I'm tickled to be alive. "Chemo is our friend," I keep quoting, even though it is killing me; so that I can keep living! Wow what a rare disease, isn't it! How in the world did any of us end up with this?

    Hi Biz
    Hope you are doing alright. June
  • b-bowen
    b-bowen Member Posts: 1

    newly diagnosed MMMT
    Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

    mmmt
    My wife (72) was told she has stage 4 MMMT in June 2010. We went to Sloan in NY. Was very disappointed with DR. and response. There is a women DR.there that knows something about MMMT. We saw the wrong DR.Veach, He did no special test, did not return my e-mails and it took over a month to get his report.

    We went to Hillman Cancer Center (11/18/10) in Pittsburgh, DR. Edwards has seen over 70 MMMT case. Very knowledgeable My wife had a complete hysterectomy in 1977. She had a 6 cm growth removed on 8/24/10. and it is coming back already. She is suppose to go back Dec 7 to be opened up and the have the Chemo wash. Then 6 months of Chemo after that.

    Wish you the best of luck and God be with you.

    Bud
  • nempark
    nempark Member Posts: 681
    b-bowen said:

    mmmt
    My wife (72) was told she has stage 4 MMMT in June 2010. We went to Sloan in NY. Was very disappointed with DR. and response. There is a women DR.there that knows something about MMMT. We saw the wrong DR.Veach, He did no special test, did not return my e-mails and it took over a month to get his report.

    We went to Hillman Cancer Center (11/18/10) in Pittsburgh, DR. Edwards has seen over 70 MMMT case. Very knowledgeable My wife had a complete hysterectomy in 1977. She had a 6 cm growth removed on 8/24/10. and it is coming back already. She is suppose to go back Dec 7 to be opened up and the have the Chemo wash. Then 6 months of Chemo after that.

    Wish you the best of luck and God be with you.

    Bud

    So sorry to hear of your wife
    Where is the growth? Did she have chemo for the growth when they removed it? Okay, I am sure you are now in better hands. Some of these Docs are only interested in seeing as much patients in one day in order to make $$$$ so they don't take the time to really take care of you. I am glad that you immediately found a really good Doc. I am strongly thinking of seeing another doc just for a second opinion. I was dx in 2009, total hyst. All is well to date. Please keep in touch especially since this is a rare cancer, I would like to get updates. May our Great God be with you at this time and give you the strength and wisdom to deal with this dreaded disease. June.
  • AndyCN
    AndyCN Member Posts: 2
    nempark said:

    So sorry to hear of your wife
    Where is the growth? Did she have chemo for the growth when they removed it? Okay, I am sure you are now in better hands. Some of these Docs are only interested in seeing as much patients in one day in order to make $$$$ so they don't take the time to really take care of you. I am glad that you immediately found a really good Doc. I am strongly thinking of seeing another doc just for a second opinion. I was dx in 2009, total hyst. All is well to date. Please keep in touch especially since this is a rare cancer, I would like to get updates. May our Great God be with you at this time and give you the strength and wisdom to deal with this dreaded disease. June.

    update on mom
    My mom has been on Avastin and it did help for a while. Now she's on some other drug due to resistence / toxity.

    She still has 2 big masses in tummy and mets in lungs.

    Our doc will continue with some other chemo drug next week, but other docs who i go for 2nd opinion are giving up.

    for those ladies on this site who have very late stage / recurrance ladies and is in remission now - can i know what drug you used? did you do surgery? how long did it take for the tumor to grow again (if unfortunately it came back) after surgery?
  • nempark
    nempark Member Posts: 681
    AndyCN said:

    update on mom
    My mom has been on Avastin and it did help for a while. Now she's on some other drug due to resistence / toxity.

    She still has 2 big masses in tummy and mets in lungs.

    Our doc will continue with some other chemo drug next week, but other docs who i go for 2nd opinion are giving up.

    for those ladies on this site who have very late stage / recurrance ladies and is in remission now - can i know what drug you used? did you do surgery? how long did it take for the tumor to grow again (if unfortunately it came back) after surgery?

    Hi AndyI
    So sorry, I do not have much information for you, because I was stage 1a and had a total hyst. These cancers are very aggressive and you never know when it will show up its ugly face. Please do not give up with mom, tell them to try everything they have. Maybe
    someone else on the board will be able to give you some good advice. My prayers are with you and mom. Keep up the good work. J.
  • Susanna23
    Susanna23 Member Posts: 66
    nempark said:

    Hi AndyI
    So sorry, I do not have much information for you, because I was stage 1a and had a total hyst. These cancers are very aggressive and you never know when it will show up its ugly face. Please do not give up with mom, tell them to try everything they have. Maybe
    someone else on the board will be able to give you some good advice. My prayers are with you and mom. Keep up the good work. J.

    just found you today
    Hello everyone
    I had written confirmation today that I have a uterine carcinosarcoma Stage 1a, after meeting with a second consultant last week to discuss further treatment. I had total hysterectomy with lymph node dissection and washings on November 10 - lymph nodes and washings clear and tumour very small. Till last week, I assumed it was a grade 3 adenocarcinoma because all my consulations - from endometrial biopsy onwards - said grade 3 and adenocarcinoma is the most common type. I was told last week - now confirmed - that the possibility of distant recurrence is around 30% and I can either opt for follow up or 6 rounds of carboplatin and taxol but there is no guarantee that the latter will improve my chances as trials have not been done (but the consultant hinted to me that her feeling was that it might halve the chances of recurrence but she has been careful to say that there is no level 1 evidence of this). I have signed up to the chemo! I've recovered better than I thought from the surgery - thought I had put it all behind me (apart from being warned that grade 3 is 'unpredictable') Till I saw the second doctor (my surgeon having said chemo might be helpful) I thought the only way ahead was to try to get onto the PORTEC-3 trial which would have given radiotherapy plus or minus the chemo. But I am not eligible for that, and apparently I don't need the radiotherapy at present (they would do it for a local recurrence). My internet research on this has made very dismal reading - as some of you have said. It's making me start to re-think lots of things. I am 60 and I was hoping to carry on working till I am 65 (I am a freelance journalist) - now I am wondering, do I retire early, call in the pension? Set my affairs in order? (of course, they should already be in order!)
    I am based in London, UK. I noticed one lady on this forum is in Scotland. Are we the only two people in the UK with this? I have nothing but praise for the way I've been treated thus far - I don't blame anyone for not picking up the carcinosarcoma Dx straight off.
    Take care and happy Christmas. Hope to hear from some of you in due course.
    Sue
  • nempark
    nempark Member Posts: 681
    Susanna23 said:

    just found you today
    Hello everyone
    I had written confirmation today that I have a uterine carcinosarcoma Stage 1a, after meeting with a second consultant last week to discuss further treatment. I had total hysterectomy with lymph node dissection and washings on November 10 - lymph nodes and washings clear and tumour very small. Till last week, I assumed it was a grade 3 adenocarcinoma because all my consulations - from endometrial biopsy onwards - said grade 3 and adenocarcinoma is the most common type. I was told last week - now confirmed - that the possibility of distant recurrence is around 30% and I can either opt for follow up or 6 rounds of carboplatin and taxol but there is no guarantee that the latter will improve my chances as trials have not been done (but the consultant hinted to me that her feeling was that it might halve the chances of recurrence but she has been careful to say that there is no level 1 evidence of this). I have signed up to the chemo! I've recovered better than I thought from the surgery - thought I had put it all behind me (apart from being warned that grade 3 is 'unpredictable') Till I saw the second doctor (my surgeon having said chemo might be helpful) I thought the only way ahead was to try to get onto the PORTEC-3 trial which would have given radiotherapy plus or minus the chemo. But I am not eligible for that, and apparently I don't need the radiotherapy at present (they would do it for a local recurrence). My internet research on this has made very dismal reading - as some of you have said. It's making me start to re-think lots of things. I am 60 and I was hoping to carry on working till I am 65 (I am a freelance journalist) - now I am wondering, do I retire early, call in the pension? Set my affairs in order? (of course, they should already be in order!)
    I am based in London, UK. I noticed one lady on this forum is in Scotland. Are we the only two people in the UK with this? I have nothing but praise for the way I've been treated thus far - I don't blame anyone for not picking up the carcinosarcoma Dx straight off.
    Take care and happy Christmas. Hope to hear from some of you in due course.
    Sue

    Susanna
    Hi Susanna sorry you had to join us. i am also 60 years and was dx in Nov 2009. Stage 1a grade 3. Total hyst and 6 sessions of chemo. No radiation. It does make you look at life differently. I am no longer working and I really don't care to go back, but I do miss the working life. The internet preaches doom and gloom so I would stay away from that. I hope you managing to cope and don't let this disease rule your life. You are the best judge whether you should continue to work or not. Believe it I still have not gotten my affairs in order (laugh). Anyway, I wish you all the best and pray that our Great Creator give you the wisdom in order to make the right decisions. Chat with you later! J.
  • Susanna23
    Susanna23 Member Posts: 66
    nempark said:

    Susanna
    Hi Susanna sorry you had to join us. i am also 60 years and was dx in Nov 2009. Stage 1a grade 3. Total hyst and 6 sessions of chemo. No radiation. It does make you look at life differently. I am no longer working and I really don't care to go back, but I do miss the working life. The internet preaches doom and gloom so I would stay away from that. I hope you managing to cope and don't let this disease rule your life. You are the best judge whether you should continue to work or not. Believe it I still have not gotten my affairs in order (laugh). Anyway, I wish you all the best and pray that our Great Creator give you the wisdom in order to make the right decisions. Chat with you later! J.

    Thanks for replying
    Dear June
    Thanks very much for replying to my post. I hope you had a good Christmas! Have you seen the MMMT group on yahoo? I have joined that also - got a couple of replies from ladies suggesting that the chemo is the way to go. I have the kidney function test this morning and hope to get a start date this week (we have a number of bank holidays in the UK around this time and really everything is not back to normal until Jan 4).
    What vitamins do you take? I am on vitamin D3. I agree with the berry juices, green tea etc - did you get any specific nutritional advice from someone or did you do your own research?
    Take care
    Sue
  • kriscan
    kriscan Member Posts: 5
    nempark said:

    Kris and everyone on this thread
    Hi guys: Please write and let us know how you are doing in treatment. Be well everyone. J

    Treatment update
    I thought I would share with everyone that I have now completed my treatment regimen. I had my surgery in July, my chemo treatments during August - October, my external radiation treatments started in October and continued all of November, and I just finished my third and final internal radiation treatment on December 29th. I was fortunate and experienced minimal side effects. Chemo caused me to lose my hair and I had some minor nausea, my radiation treatments played a little havoc with my bowels, and, naturally, there was some fatigue. However, I continued to work during my treatments and only missed days when I felt I could not perform my job responsibilities adequately.

    I am starting 2011 with my treatments behind me but now I feel like I am on watch. I am scheduled to have my first set of scans by mid January and I have multiple follow up appointments already set. I confess that this part is going to be a little difficult for me. The waiting to see if the treatments worked will cause me some anxious moments I think. I tend to be a positive person and I am feeling good, but I never felt bad before my diagnosis either.

    I am going to try to focus on living my life as normally and productively as I can since this is what I can control. I have a wonderful family which includes three children who I am fortunate enough to be close to and involved with despite the fact that they are 20, 18, & 15 (all ages when kids tend to distance themselves from parents). I am also fortunate with respect to my job because it is more than work to me,it is a mission. I work as a domestic violence, legal advocate & counselor and have been blessed to meet,help & serve many courageous, wonderful women doing my "job" and I hope to continue in my efforts for a long time to come.

    I see every day what women can accomplish under very difficult and stressful circumstances with belief in themselves and a solid support system. The inspiration they give and the courage they demonstrate will continue to help me as I help them. Kris
  • Susanna23
    Susanna23 Member Posts: 66
    kriscan said:

    Treatment update
    I thought I would share with everyone that I have now completed my treatment regimen. I had my surgery in July, my chemo treatments during August - October, my external radiation treatments started in October and continued all of November, and I just finished my third and final internal radiation treatment on December 29th. I was fortunate and experienced minimal side effects. Chemo caused me to lose my hair and I had some minor nausea, my radiation treatments played a little havoc with my bowels, and, naturally, there was some fatigue. However, I continued to work during my treatments and only missed days when I felt I could not perform my job responsibilities adequately.

    I am starting 2011 with my treatments behind me but now I feel like I am on watch. I am scheduled to have my first set of scans by mid January and I have multiple follow up appointments already set. I confess that this part is going to be a little difficult for me. The waiting to see if the treatments worked will cause me some anxious moments I think. I tend to be a positive person and I am feeling good, but I never felt bad before my diagnosis either.

    I am going to try to focus on living my life as normally and productively as I can since this is what I can control. I have a wonderful family which includes three children who I am fortunate enough to be close to and involved with despite the fact that they are 20, 18, & 15 (all ages when kids tend to distance themselves from parents). I am also fortunate with respect to my job because it is more than work to me,it is a mission. I work as a domestic violence, legal advocate & counselor and have been blessed to meet,help & serve many courageous, wonderful women doing my "job" and I hope to continue in my efforts for a long time to come.

    I see every day what women can accomplish under very difficult and stressful circumstances with belief in themselves and a solid support system. The inspiration they give and the courage they demonstrate will continue to help me as I help them. Kris

    your treatment update
    Hi Kris
    Well done on finishing your treatments! You are a stage ahead of me - I start my chemo on Tuesday. It's encouraging to learn of your ezperience of treatments - that you continued to work and live normally as far as possible. That's what I will try to do as well. Good luck with your tests as they come up - please let us know how you get on
    Take care
    Susan
  • kriscan
    kriscan Member Posts: 5
    Susanna23 said:

    your treatment update
    Hi Kris
    Well done on finishing your treatments! You are a stage ahead of me - I start my chemo on Tuesday. It's encouraging to learn of your ezperience of treatments - that you continued to work and live normally as far as possible. That's what I will try to do as well. Good luck with your tests as they come up - please let us know how you get on
    Take care
    Susan

    First Pet Scan Results
    Hi Susan,

    I guess you are undergoing your chemo treatments now. I hope all is going well and you are experiencing minimal side effects. I am recovering from all the side effects I experienced during chemo and radiation. My hair is back and, apparently, I am in style with my very short hair since the pixie cuts have become the style of choice for many celebs lately.

    I just had my first set of pet scans last week and the results are in: I got the all clear!!! I had a couple of anxious days waitng for the results but what a relief when the doctor told me there was no sign of cancer. Of course there will be many more scans to look forward to but that is the goal isn't it? To be able to keep looking and moving forward.

    I am back to my full work schedule and I have returned to my volunteer work as well. I still combat the fatigue now and then but, overall, life is good. I hope your treatments go well and I look forward to hearing about your experience.

    Keep smiling!
    Kristine
  • dlustrous1
    dlustrous1 Member Posts: 2
    Susanna23 said:

    Thanks for replying
    Dear June
    Thanks very much for replying to my post. I hope you had a good Christmas! Have you seen the MMMT group on yahoo? I have joined that also - got a couple of replies from ladies suggesting that the chemo is the way to go. I have the kidney function test this morning and hope to get a start date this week (we have a number of bank holidays in the UK around this time and really everything is not back to normal until Jan 4).
    What vitamins do you take? I am on vitamin D3. I agree with the berry juices, green tea etc - did you get any specific nutritional advice from someone or did you do your own research?
    Take care
    Sue

    MMMT
    I'm replying to the latest comment since this blog has continued for so long. I am currently 59 years old and will celebrate my 60th birthday in July. I never thought I'd see 55 years old!
    I was diagnosed with MMMT (I've never heard this accronym before!) 3C in March 2006. I had 6 rounds of chemo and 30 doses of 8 fields of radiation each time and 3 internal doses of radiation. I was given until the end of the year (2006) to live. This March will be 5 years since my initial surgery/treatment. DO NOT EVER GIVE UP!!!! I was sure my life was over but I've lived through the birth of 4 additional grandchildren, travel to Europe, Hawaii and many other places. I read all of the horror stories on-line - thinking my life was over. But no one really knows, do they? So, continue to grab all the life you can!!!!!
    Prayers and best wishes to all of you!!!
    Diane
  • jazzy1
    jazzy1 Member Posts: 1,379

    MMMT
    I'm replying to the latest comment since this blog has continued for so long. I am currently 59 years old and will celebrate my 60th birthday in July. I never thought I'd see 55 years old!
    I was diagnosed with MMMT (I've never heard this accronym before!) 3C in March 2006. I had 6 rounds of chemo and 30 doses of 8 fields of radiation each time and 3 internal doses of radiation. I was given until the end of the year (2006) to live. This March will be 5 years since my initial surgery/treatment. DO NOT EVER GIVE UP!!!! I was sure my life was over but I've lived through the birth of 4 additional grandchildren, travel to Europe, Hawaii and many other places. I read all of the horror stories on-line - thinking my life was over. But no one really knows, do they? So, continue to grab all the life you can!!!!!
    Prayers and best wishes to all of you!!!
    Diane

    Diane
    You're such an inspiration that we can endure, even when statistics have us in the ground way too soon. I live my life very optimistically and believe my higher power will allow me to enjoy a wonderful and long life.

    I completed my treatments (for MMMT) July '09 and have been NED since....knocking on wood now!! I think so much of this is truly luck. My only way of control is with how I now take care of my body thru exercise, organic/whole foods and lots of laughing and positive thoughts.

    Good luck to you and hope you're NED for another 20 years!
    Jan
  • nempark
    nempark Member Posts: 681
    jazzy1 said:

    Diane
    You're such an inspiration that we can endure, even when statistics have us in the ground way too soon. I live my life very optimistically and believe my higher power will allow me to enjoy a wonderful and long life.

    I completed my treatments (for MMMT) July '09 and have been NED since....knocking on wood now!! I think so much of this is truly luck. My only way of control is with how I now take care of my body thru exercise, organic/whole foods and lots of laughing and positive thoughts.

    Good luck to you and hope you're NED for another 20 years!
    Jan

    Diane and Jan
    Thanks for the encouragement!!! Diane you are doing great, you are cured. Jan, I always read your posts, keep up the good work. Let's all continue to be NED. I am so sorry to hear about our dear friend Linda, but I don't want to start worrying because I know she will come up with a great plan!!! Love to all. June