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Newly Diagnosed with stage 4b MMMT

Julie_123
Julie_123 Member Posts: 17

I just recently had a radical hysterectomy and the pathology report came in as Edometrial Carcinosarcoma Maligment Mixed Mulleran Tumor Carinoma componet high grade serous type Stage 4B. I have it lymphodes one ovary (removed) and in my Omentum...

It takes you back getting a diagnois like this. Makes you want to stop and semll the roses.  I am terrified. 

I am supposed to start chemo soon. I am not sure what to expect. Given the survival rate for this for what I have and my prognosis, I am not even sure I should go through with the Chemo. Quality vrs  Quantity. 

I Know that what I am saying sounds like I am on a real downer and negative...but I am not... I will go through what ever trial God wants me to go through....I am hoping I will feel his loving kindness as I go through this what ever it is. Not looking forwrd to Chemo...loosing my hair, throwing up...

But if it gives me another day to be with my Cat... and paint..I am the worlds worst artist...but I enjoy it. 

What I am really wanting to know if there is anyone who has MMT...less than 1000 people are diagnosed in a year.

I started My Journey last May when I  started bleeding. At first I thought I was just having a period. I went and looked on the internet when it did not go away after 5 days, and saw that it could be cancer. 

I went to the OBGYN who was amazing by the way. She tried to do a byopsy but cuold not do it the pain

was excrusiating. So they tried an ultrasound with the same result. Then she got me into a OBGYN who was also amazing. They put in an IUD to treat it as pre cancer but the pathology came back as High grade edometrial spindal cell sarcoma. They sent me to the OBGYN oncologist and did my hysterectomy on the 19th and let me know the final pathology report on the 24th. 

As soon as I heal from the hysterectomy we are supposed to strt the chemo process. 

I have what seems like a million questions and issues to figure out. I am overwhelmed. This week is so much better than last week though. I started back to work, working from home and it has gotten my mind off my troubles.. 

 

Anyway that is my story, If anyone is going through the same cancer I would love to hear from you, about your journey. What to look out for. I feel like I am going hiking at night on a nigth with no moonlite or flashlite. 

Kindest Regards, 

 


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Comments

  • LouDy22
    LouDy22 Member Posts: 25
    edited September 4 #2
    Mom has 4B Carcinosarcoma

    Mom was officially diagnosed in April when she was scheduled for surgery , they opened her up and closed her up because of the extensive spread , she started neo adjuvant chemotherapy in hopes to shrink the tumors enough for surgery , she was given carboplatin and paclitaxel , unfortunately while one tumor shrunk other progressed so the doctor said he will not due surgery , we went for a second opinion to Chapel Hill NC where again they refused to die surgery due to the aggressive speed of this cancer , they said if they could not achieve optimal debulking then surgery was pointless , she was then given Keytruda and Lenvima ...... fast foward 2 months and now mom has nephrostomy tubes coming out her back because her tumor has squished her bladder , she sleeps all day and dosent eat and we don't know if it's the cancer or the immunotherapy......... just because my mom didn't have success with frontline treatment does not mean you won't either ..... keep your head high , stay positive and you need to move with extreme urgency , Carcinosarcoma can have different percentages of the Carcinoma and Sarcoma element , hopefully yours is mostly carcinoma as Sarcomas at a late stage don't respond to chemotherapy all that welll but again it may , everybody is a statistic of 1 ..... if you ever want to talk about all of our experiences and doctors visitd and pathology reports you can text me anytime.....631-943-1002 .... whatever you choose just make sure you rush rush rush

  • Afoste3
    Afoste3 Member Posts: 28 **
    my mom has the same diagnosis

    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_123
    Julie_123 Member Posts: 17
    edited September 4 #4
    Afoste3 said:

    my mom has the same diagnosis

    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

    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

  • cmb
    cmb Member Posts: 751 **
    Also have uterine carcinosarcoma

    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.

  • Julie_123
    Julie_123 Member Posts: 17
    cmb

    Hi CMB,

    Wow that is so encouraging... My Doctor told me when he gave me the news that the prognosis is poor but" you are not a statistics; I try to keep remembering that. It is so great to hear that there really are people who are living and thriving with this disease and can put it behind them. Thank you so much for the informaation the the links to the posts. I cannot wait to read them. 

     

    Thank you gain from the bottom of my heart..

     

    Julie

  • Tamlen
    Tamlen Member Posts: 323 **
    Also Stage 4B

    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

  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    edited September 5 #8
    cmb said:

    Also have uterine carcinosarcoma

    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.

    You Are a Hope Giver <3</b>
    Thanks so much for always showing up. You remind all of us that we aren't a statistic. Thanks for showing up, always. I know I'm repeating myself. 
  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    Hi Julie!

    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. 

  • oldbeauty
    oldbeauty Member Posts: 319 **
    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

    Genomic testing worthwhile

    You might do well by pressing your doctor to begin the process to submit your tissue to Foundation One or Caris (another company that does testing).  While I don't have the same histology, it's my impression from reading this board for years that the immunotherapy drugs are more relevant to your diagnosis than mine (endometrioid adenocarcinoma).  The testing should be covered by insurance in your circumstances, and, if not, both companies work to ensure people benefit from their science at minimal or no cost.  You just may find there is a product on the market that your tumor profile really responds to.  Best wishes, Oldbeauty

  • Afoste3
    Afoste3 Member Posts: 28 **
    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

    one more thing

    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
    Julie_123 Member Posts: 17
    Afoste3 said:

    one more thing

    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

    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....

  • cmb
    cmb Member Posts: 751 **
    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....

    Port

    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.

  • Afoste3
    Afoste3 Member Posts: 28 **
    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....

    getting the port wasn't painful

    Hi Julie,

    Like cmb said my mom didn't have pain when the port was put in.  I think she was just numbed (not under twilight sedation). It was a little sore a few days after, but then fine.  Now she doesn't even know it's there.  It was so miserable for her after surgery when the nurses would try to find veins (same as you experienced, only old pros could do it) that avoiding that made the chemo process so much easier. Since you have "bad" veins too I would definitely recommend you get a port :)

    Anne-Marie

  • MelissaJA
    MelissaJA Member Posts: 25 **
    edited September 10 #15
    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.”

     

  • cmb
    cmb Member Posts: 751 **
    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.”

     

    Living in the moment

    Melissa,

    I'm glad to hear that you are doing well after all your treatments.

    When I hit the 2-year mark with no recurrence, I decided that whatever time I had after that was "found time" and I was going to really appreciate it. I aim to enjoy the life I have now everyday, although I suspect the thought of recurrence will always be at the back of my mind.

    Love the Emerson poem.

  • MAbound
    MAbound Member Posts: 1,156 **
    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.”

     

    Love the Poem!

    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!

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,801 **
    edited September 10 #18
    Melissa, So good to see your

    Melissa, So good to see your face pop up. Congrats on your continued dance with Ned. Thanks for sharing the poem. It sure has a lot of meaning for so many of us.

    Love and Hugs,

    Cindi

  • ConnieSW
    ConnieSW Member Posts: 1,578 **
    edited September 11 #19
    Melissa, I was delighted

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

  • Julie_123
    Julie_123 Member Posts: 17
    Afoste3 said:

    getting the port wasn't painful

    Hi Julie,

    Like cmb said my mom didn't have pain when the port was put in.  I think she was just numbed (not under twilight sedation). It was a little sore a few days after, but then fine.  Now she doesn't even know it's there.  It was so miserable for her after surgery when the nurses would try to find veins (same as you experienced, only old pros could do it) that avoiding that made the chemo process so much easier. Since you have "bad" veins too I would definitely recommend you get a port :)

    Anne-Marie

    That's comforting to know.

    Anne Marie, cmbCool

     

    Thank you for the comforting info regrding the port. I am hoping that my exprenece will be the same...right not I have a cardio patch on...I was having a racing heart. I think it was more due panic attachs and stress from work than any thing. Each time I had one I was thinking about work....My primary care physican thought I better get one for a better look. This moKinnitor is adhred to my skin for the next 13 days . To me its a precurser to the centeral port. Kind of a warm up to it. 

     

    Julie

     

  • Julie_123
    Julie_123 Member Posts: 17
    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.”

     

    Thank you form the bottom of my heart.

    Your words are so beautiful and inspriring. I loved LOVED the beautiful Poem. Way to go Ralph Waldo Emerson....The perfect words written so many years ago...Thank  you so much for sharing it with me. I want ot share it with all my freinds and family. 

    My Doctor did not take out my Omentum...I asked him if he was going to and he said no.. I have a 2.6 cm tumor in my Omentum that believe he took out. A 5.2 cm tumer in endometrum which he took out . The pathology report also states pelvic peritoneum, biopsy.

    Thank you for sharing your journey and giving me a hope....That poem was just beautiful.

    Thank you