Are there any other MMMT survivors out there?

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  • Ro10
    Ro10 Member Posts: 1,561

    Driving to and from Chemo

    Thanks, Jan, and the best of holidays to you as well.  Will follow your advice!  Have been looking online for wigs, 

    Since I will need chemo (3) in January am wondering if I will be able to drive myself to and from the appointment.  I have been blessed with a wonderful neighbor who has been driving me to and from my surgery and appointments in Tampa which is 1 1/2 hours from here, but feel bad that I have to take advantage of her generosity so much and if I don't need to would like not to burden her with these appointments.  Luckily they will be local, but still.  Only about 20 minutes from my home.

    Also, will have radiation (3) after first chemo and then more chemo (3) afterwards.

    Can someone tell me about this, please?

    Ocalagirl

    You probably could drive yourself, but you might enjoy the company of someone during the hours you are in chemo.  Sometimes it is an hour wait before chemo is started.   Some visit with others also getting chemo, but sometimes  the others getting chemo sleep or do not want to visit.

    my husband always went with me to chemo.  I also took my I- pod and my lap top or I- pad plus suduko books.  My chemo had to be given slowly, so I was there for 8 hours.  After my reaction to Carboplatin, it became two eight hour days.  With Cisplatin I got hydration before and after the cisplatin because it is hard on the kidneys.

    i drank fluids the whole time I got chemo.  I took Chrystal light to add to the water.  I also took hard candy to suck on.  

    Enjoy the holidays.  Hope your first Chemo goes well.  I remember how anxious I was because I did not know how I would react to it. It was not nearly as bad as I had anticipated.  Come back with any other questions you may have.  In peace and caring.

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    Ro10 said:

    Ocalagirl

    You probably could drive yourself, but you might enjoy the company of someone during the hours you are in chemo.  Sometimes it is an hour wait before chemo is started.   Some visit with others also getting chemo, but sometimes  the others getting chemo sleep or do not want to visit.

    my husband always went with me to chemo.  I also took my I- pod and my lap top or I- pad plus suduko books.  My chemo had to be given slowly, so I was there for 8 hours.  After my reaction to Carboplatin, it became two eight hour days.  With Cisplatin I got hydration before and after the cisplatin because it is hard on the kidneys.

    i drank fluids the whole time I got chemo.  I took Chrystal light to add to the water.  I also took hard candy to suck on.  

    Enjoy the holidays.  Hope your first Chemo goes well.  I remember how anxious I was because I did not know how I would react to it. It was not nearly as bad as I had anticipated.  Come back with any other questions you may have.  In peace and caring.

    Wishing you all a Merry Christmas today!

    Having a very hard time last night, Christmas Eve, and this morning, Christmas day!  This is till so unbelievable!

    I don't know if it is the lack of hormones after my radical hysterectomy 5 weeks ago, even though I am 72 and have been through menopause more that 27 years ago, but just can't keep the tears from welling up and coming.

    I am German and Christmas has always been such a big, sentimental time, especially Christmas Eve when we celebrate and give presents and then go to Midnight Mass, and all the wonderful music. 

    Wondering if I will have next year and maybe the year after that.  From what I read the survival rate is, at best 1.5 -3 years.  But then maybe knowing that will help, rather than not knowing when we have to go.

    Hug your loved ones tight today and every day!

    Thank you, RO10 for your comforting messages.  Best wishes to you!

     

  • cleo
    cleo Member Posts: 144

    Wishing you all a Merry Christmas today!

    Having a very hard time last night, Christmas Eve, and this morning, Christmas day!  This is till so unbelievable!

    I don't know if it is the lack of hormones after my radical hysterectomy 5 weeks ago, even though I am 72 and have been through menopause more that 27 years ago, but just can't keep the tears from welling up and coming.

    I am German and Christmas has always been such a big, sentimental time, especially Christmas Eve when we celebrate and give presents and then go to Midnight Mass, and all the wonderful music. 

    Wondering if I will have next year and maybe the year after that.  From what I read the survival rate is, at best 1.5 -3 years.  But then maybe knowing that will help, rather than not knowing when we have to go.

    Hug your loved ones tight today and every day!

    Thank you, RO10 for your comforting messages.  Best wishes to you!

     

    Ocalagal

    Ocalagal.   Please do not read about stats, they do not talk about those of us who are still here.  I was Grade 4  MMT with the uterus perforated and cancer through to the bladder and lymph glands.  That was 6 years ago.  Be positive.   Boxing Day here today and we are off to visit my very first 3.5 month grandchild [I am 73!!!  All late starters!!]   and I intend to be around to enjoy her for many years.        Look ahead with confidence in the New Year and I will catch up with you this time in 2014. 

  • Ocalagal99
    Ocalagal99 Member Posts: 29
    cleo said:

    Ocalagal

    Ocalagal.   Please do not read about stats, they do not talk about those of us who are still here.  I was Grade 4  MMT with the uterus perforated and cancer through to the bladder and lymph glands.  That was 6 years ago.  Be positive.   Boxing Day here today and we are off to visit my very first 3.5 month grandchild [I am 73!!!  All late starters!!]   and I intend to be around to enjoy her for many years.        Look ahead with confidence in the New Year and I will catch up with you this time in 2014. 

    Thank you!...now please tell me about Chemo Brain!

    Thank you, cleo.  So great to hear how well you are doing, wow - 6 years!  That would be great!

    Happy Boxing Day!  Have great memories of my one and only Boxing Day in England, staying at the Lygon Arms in Broadway.  Wonderful Christmas dinner with poppers!  What fun!  Seeing the No Cotswold hunt come down Main (High) Street on Boxing Day morning at breakfast time was a real treat for us horsey people!

    Glad this Christmas is over with, we don't have Boxing Day!  now just to get through New Year's Eve!  Sleeping will be indicated!

    So, I just started reading about "Chemo Brain"....something new to be concerned about!  Does anyone have something informative to add on this.  I live alone and am concerned about being able to function as to finances, dogs, driving, etc.  Many thanks!

    Yes, catching up this time in 2014 will be fantastic and we will have to plan on it.  Happy and healthy New Year to you!

  • Ro10
    Ro10 Member Posts: 1,561

    Thank you!...now please tell me about Chemo Brain!

    Thank you, cleo.  So great to hear how well you are doing, wow - 6 years!  That would be great!

    Happy Boxing Day!  Have great memories of my one and only Boxing Day in England, staying at the Lygon Arms in Broadway.  Wonderful Christmas dinner with poppers!  What fun!  Seeing the No Cotswold hunt come down Main (High) Street on Boxing Day morning at breakfast time was a real treat for us horsey people!

    Glad this Christmas is over with, we don't have Boxing Day!  now just to get through New Year's Eve!  Sleeping will be indicated!

    So, I just started reading about "Chemo Brain"....something new to be concerned about!  Does anyone have something informative to add on this.  I live alone and am concerned about being able to function as to finances, dogs, driving, etc.  Many thanks!

    Yes, catching up this time in 2014 will be fantastic and we will have to plan on it.  Happy and healthy New Year to you!

    Ocalagal

    I don't think I noticed chemo brain until after my first round (6 treatments).  I noticed I could not remember things as before.  After 3 rounds of chemo ( 19 treatments) I still have effects of chemo brain.  I just don't remember things from the past.   I do suduko, and Kakuro puzzles to stimulate the brain.  I don' t think you will have trouble with finances, dogs and driving.  You might just need to keep lists.  

    I do not think everyone has trouble with chemo brain.  So you may be one that does not get it.  If you put " chemo brain" in the subject box on the first page, you will find other posts regarding this.  I hope you are doing some fun things and not spending your time worrying about " what if".   I know it is hard not to worry.  T

    also if you start a new discussion when you have a question or concern it will be easier to find than on these long discussion posts.  Feel free to ask any questions or express any concerns you have.  In peace and caring.

  • frodolass
    frodolass Member Posts: 32

    Driving to and from Chemo

    Thanks, Jan, and the best of holidays to you as well.  Will follow your advice!  Have been looking online for wigs, 

    Since I will need chemo (3) in January am wondering if I will be able to drive myself to and from the appointment.  I have been blessed with a wonderful neighbor who has been driving me to and from my surgery and appointments in Tampa which is 1 1/2 hours from here, but feel bad that I have to take advantage of her generosity so much and if I don't need to would like not to burden her with these appointments.  Luckily they will be local, but still.  Only about 20 minutes from my home.

    Also, will have radiation (3) after first chemo and then more chemo (3) afterwards.

    Can someone tell me about this, please?

    I drove myself

    Hi neighbor! I'm about an hour from Gainesville and I drove myself to chemo and radiation treatments for 6 weeks with no problems. I was very lucky that I had very little nausea or other side effects. My sister came with me the first couple of appointments, but there isn't space in the chemo room for visitors, so she didn't come after that. I start more chemo in January and I'll have to see how it goes. VERY happy to be done with radiation.

     

  • Teamkelly
    Teamkelly Member Posts: 63
    frodolass said:

    I drove myself

    Hi neighbor! I'm about an hour from Gainesville and I drove myself to chemo and radiation treatments for 6 weeks with no problems. I was very lucky that I had very little nausea or other side effects. My sister came with me the first couple of appointments, but there isn't space in the chemo room for visitors, so she didn't come after that. I start more chemo in January and I'll have to see how it goes. VERY happy to be done with radiation.

     

    MMMT carcinoma sarcoma mets

    Hi,

    I post for my sister-in-law Kelly, she was diagnosed at 65 in September 2012, had complete hysterectomy diagnosed 3C MMMT. She had 6 rounds or carbo taxol, no radiation. She has done great, not many side effects, worked out 3 Times a week and walked daily During and after treatment. Last week she had garbled speech, some dizziness and nausea went to the hospital and was diagnosed with two mets in her brain and some cells in her abdomen. 

    Yesterday she had embolization of tumor on brain stem and today she has double cranium surgery to remove 2 brain tumors, followed by chemo and radiation. She is so positive, she says God is not done with her yet and I believe her, she has had a tremendous amount of energy thru all of this.

    one thing we do not understand is why her doctor, top specialist at UCLA, recommended by Sloan K, never did a PET scan, even though she asked for one repeatedly? He checked her every 3 months with blood test and exam, the last one was 3 days before Chritmas.

    Nicki

  • Ro10
    Ro10 Member Posts: 1,561
    Teamkelly said:

    MMMT carcinoma sarcoma mets

    Hi,

    I post for my sister-in-law Kelly, she was diagnosed at 65 in September 2012, had complete hysterectomy diagnosed 3C MMMT. She had 6 rounds or carbo taxol, no radiation. She has done great, not many side effects, worked out 3 Times a week and walked daily During and after treatment. Last week she had garbled speech, some dizziness and nausea went to the hospital and was diagnosed with two mets in her brain and some cells in her abdomen. 

    Yesterday she had embolization of tumor on brain stem and today she has double cranium surgery to remove 2 brain tumors, followed by chemo and radiation. She is so positive, she says God is not done with her yet and I believe her, she has had a tremendous amount of energy thru all of this.

    one thing we do not understand is why her doctor, top specialist at UCLA, recommended by Sloan K, never did a PET scan, even though she asked for one repeatedly? He checked her every 3 months with blood test and exam, the last one was 3 days before Chritmas.

    Nicki

    Team Kelly

    I am so sorry to hear Kelly has mets to the brain.  I pray that the surgery will go well.  She is so lucky to have you for support.  I know this has to be scary for everyone.  I will keep you all in my prayers.

    to answer your question.  Some doctors prefer CAT scans over PET scans.  My doctors do.   The brain is not usually scanned unless there are symptoms.  It does not sound like Kelly had symptoms previously.  My scans include the chest, abdomen and pelvis.

    i think it is rare for uterine cancer to go to the brain.  I am so sorry that Kelly's cancer did go there.  I pray that her treatment plan works for her.  I am happy she still has a positive attitude.  I believe that makes a big difference.  Having good support is so important, too.  Please keep us updated.  In peace and caring.

  • ConnieSW
    ConnieSW Member Posts: 1,616 Member
    Teamkelly said:

    MMMT carcinoma sarcoma mets

    Hi,

    I post for my sister-in-law Kelly, she was diagnosed at 65 in September 2012, had complete hysterectomy diagnosed 3C MMMT. She had 6 rounds or carbo taxol, no radiation. She has done great, not many side effects, worked out 3 Times a week and walked daily During and after treatment. Last week she had garbled speech, some dizziness and nausea went to the hospital and was diagnosed with two mets in her brain and some cells in her abdomen. 

    Yesterday she had embolization of tumor on brain stem and today she has double cranium surgery to remove 2 brain tumors, followed by chemo and radiation. She is so positive, she says God is not done with her yet and I believe her, she has had a tremendous amount of energy thru all of this.

    one thing we do not understand is why her doctor, top specialist at UCLA, recommended by Sloan K, never did a PET scan, even though she asked for one repeatedly? He checked her every 3 months with blood test and exam, the last one was 3 days before Chritmas.

    Nicki

    Bad news

    Nicki,  I have wondered how Kelly was doing and hoped no news was good news.  I'm sorry her NED time was so short.  I hope the surgery is going well and will be keeping her in my thoughts.  You too.

     

    as for f/u, it doesn't seem to be a cut and dried thing.  I had 1 CT scan in Oct '12 and exams and blood work since then.  I've been ok with that since my creatinine has been a little elevated since chemo so have to weigh possible benefits vs kidney damage from the contrast.  I was 1a UPSC  so the early dx may make a difference despite it being another grade 3 ca.  I recall you had a second opinion re treatment.  Did that include recommendations for F/U?  I would have been so focused on treatment that I wouldn't have thought about asking questions re afterwards.  I will now, should it be necessary.

    Please keep us updated.  We are with you.

  • Teamkelly
    Teamkelly Member Posts: 63
    Kelly 24 hours after double brain surgery

    image

  • Teamkelly
    Teamkelly Member Posts: 63
    Teamkelly said:

    Kelly 24 hours after double brain surgery

    image

    Kelly Update
    Dear Family and Friends,

     

    What an amazing day it has been!  The video this morning was taken right after they took the ventilator tube out of Kelly's mouth.  Once that tube came out, she continued to make amazing strides.  She passed the swallow test with flying colors and was able to start a normal diet by mid-afternoon.   By late this afternoon she was able to sit straight up in bed and eat her yummy brownie dessert :)  Definitely not hospital food…..Richard brought her some yummy soup and dessert :)

     

    Doesn't she look great?  Who looks like this after double brain surgery?  God moved a mountain last night/today…….and we were all privileged to witness it!!!!  Kelly is definitely the result of a lot of answered prayer!!!  

     

    Kelly had a MRI this afternoon, but we won't know the results until the oncologist has a chance to compare it to her previous ones.  We are expecting to meet with him in the next few days.  The main concentration right now is for her to continue to rest and heal.  We will continue to let you know how she is doing and when she is expected to go home.  At present, we believe she will be in ICU for 4 more days.  

     

    COULD NOT USE VIDEO. SO I USED A PICTURE INSTEAD.

     

    Psalm 55:22  Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
  • ConnieSW
    ConnieSW Member Posts: 1,616 Member
    Teamkelly said:

    Kelly Update

    Dear Family and Friends,

     

    What an amazing day it has been!  The video this morning was taken right after they took the ventilator tube out of Kelly's mouth.  Once that tube came out, she continued to make amazing strides.  She passed the swallow test with flying colors and was able to start a normal diet by mid-afternoon.   By late this afternoon she was able to sit straight up in bed and eat her yummy brownie dessert :)  Definitely not hospital food…..Richard brought her some yummy soup and dessert :)

     

    Doesn't she look great?  Who looks like this after double brain surgery?  God moved a mountain last night/today…….and we were all privileged to witness it!!!!  Kelly is definitely the result of a lot of answered prayer!!!  

     

    Kelly had a MRI this afternoon, but we won't know the results until the oncologist has a chance to compare it to her previous ones.  We are expecting to meet with him in the next few days.  The main concentration right now is for her to continue to rest and heal.  We will continue to let you know how she is doing and when she is expected to go home.  At present, we believe she will be in ICU for 4 more days.  

     

    COULD NOT USE VIDEO. SO I USED A PICTURE INSTEAD.

     

    Psalm 55:22  Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
    She looks fantastic

    May her recovery be complete and uneventful.

  • Teamkelly
    Teamkelly Member Posts: 63
    Teamkelly said:

    Kelly Update

    Dear Family and Friends,

     

    What an amazing day it has been!  The video this morning was taken right after they took the ventilator tube out of Kelly's mouth.  Once that tube came out, she continued to make amazing strides.  She passed the swallow test with flying colors and was able to start a normal diet by mid-afternoon.   By late this afternoon she was able to sit straight up in bed and eat her yummy brownie dessert :)  Definitely not hospital food…..Richard brought her some yummy soup and dessert :)

     

    Doesn't she look great?  Who looks like this after double brain surgery?  God moved a mountain last night/today…….and we were all privileged to witness it!!!!  Kelly is definitely the result of a lot of answered prayer!!!  

     

    Kelly had a MRI this afternoon, but we won't know the results until the oncologist has a chance to compare it to her previous ones.  We are expecting to meet with him in the next few days.  The main concentration right now is for her to continue to rest and heal.  We will continue to let you know how she is doing and when she is expected to go home.  At present, we believe she will be in ICU for 4 more days.  

     

    COULD NOT USE VIDEO. SO I USED A PICTURE INSTEAD.

     

    Psalm 55:22  Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
    Kelly dancing at my daughter's wedding in September

    image

  • Hybridspirits
    Hybridspirits Member Posts: 209
    Teamkelly said:

    Kelly Update

    Dear Family and Friends,

     

    What an amazing day it has been!  The video this morning was taken right after they took the ventilator tube out of Kelly's mouth.  Once that tube came out, she continued to make amazing strides.  She passed the swallow test with flying colors and was able to start a normal diet by mid-afternoon.   By late this afternoon she was able to sit straight up in bed and eat her yummy brownie dessert :)  Definitely not hospital food…..Richard brought her some yummy soup and dessert :)

     

    Doesn't she look great?  Who looks like this after double brain surgery?  God moved a mountain last night/today…….and we were all privileged to witness it!!!!  Kelly is definitely the result of a lot of answered prayer!!!  

     

    Kelly had a MRI this afternoon, but we won't know the results until the oncologist has a chance to compare it to her previous ones.  We are expecting to meet with him in the next few days.  The main concentration right now is for her to continue to rest and heal.  We will continue to let you know how she is doing and when she is expected to go home.  At present, we believe she will be in ICU for 4 more days.  

     

    COULD NOT USE VIDEO. SO I USED A PICTURE INSTEAD.

     

    Psalm 55:22  Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
    awesome news

    This is great news.  Hoping for ongoing and continued positive reports

  • Teamkelly
    Teamkelly Member Posts: 63
    ConnieSW said:

    She looks fantastic

    May her recovery be complete and uneventful.

    Kelly

    Thank you Connie!

     

  • Ro10
    Ro10 Member Posts: 1,561
    Teamkelly said:

    Kelly Update

    Dear Family and Friends,

     

    What an amazing day it has been!  The video this morning was taken right after they took the ventilator tube out of Kelly's mouth.  Once that tube came out, she continued to make amazing strides.  She passed the swallow test with flying colors and was able to start a normal diet by mid-afternoon.   By late this afternoon she was able to sit straight up in bed and eat her yummy brownie dessert :)  Definitely not hospital food…..Richard brought her some yummy soup and dessert :)

     

    Doesn't she look great?  Who looks like this after double brain surgery?  God moved a mountain last night/today…….and we were all privileged to witness it!!!!  Kelly is definitely the result of a lot of answered prayer!!!  

     

    Kelly had a MRI this afternoon, but we won't know the results until the oncologist has a chance to compare it to her previous ones.  We are expecting to meet with him in the next few days.  The main concentration right now is for her to continue to rest and heal.  We will continue to let you know how she is doing and when she is expected to go home.  At present, we believe she will be in ICU for 4 more days.  

     

    COULD NOT USE VIDEO. SO I USED A PICTURE INSTEAD.

     

    Psalm 55:22  Cast your cares on the Lord and he will sustain you; he will never let the righteous be shaken.
    Kelly does look great

    What a great report.  And a picture is worth a thousand words!  Praying for continued healing and good results from the MRI.  Take care of yourself and keep us updated.  In peace and caring.

  • ConnieSW
    ConnieSW Member Posts: 1,616 Member
    Ro10 said:

    Kelly does look great

    What a great report.  And a picture is worth a thousand words!  Praying for continued healing and good results from the MRI.  Take care of yourself and keep us updated.  In peace and caring.

    Makeup?

    It looks like Kelly felt well enough to put her face on.  Isn't that something!

  • treezee
    treezee Member Posts: 4
    ghee56 said:

    MMMT

    I was diagnosed in 2004 at age 56....stage 1C. Had a complete hysterectomy followed by radiation, internal (ugh) and external. Followed a cancer diet for about a year after from a book sent by a doctor friend....think it was called the cancer survival diet....not sure since I passed it on to others. Lots of exercise and prayer. Only residual problem is pain in the area, probably from internal radiation. Best of luck to you....How were you diagnosed? Mine was a fluke diagnosis as the result of a D&C to remove a cyst.

    you sound like me...  I had

    you sound like me...  I had very bad bleeding in April of 2012 and then went to my doctor a few months later because it did not improve.  He sent me to my first gyno he said I had polyps and fibroids so my first operation of 2013 was May 7 and 6 weeks later told I had abnormal cells.  Visit to gyno 2 for hysterectomy and had that done October 15 and a week later told cancer.  After that went to see the cancer doctor and after 2nd cancer doctor visit found out that I have MMMT and then December 12 had the other ovary out and lymph nodes out.  I go today for my results. 

    My hysterectomy gyno when he told me he said he was in complete shock of my diagnosis of cancer and MMMT. 

  • lll0501
    lll0501 Member Posts: 1
    MMMT friend

    My dear friend has MMMT and just got a scan that shows a new mass in right abdomen - omentum area. She is certain she is going to die in the next 3 or 4 months. I cannot guarantee that but i would like to give her examples of folks with similar diagnoses that have survived longer.

     

  • anissaroelle
    anissaroelle Member Posts: 1
    Hi. I'm 31 years old and last

    Hi. I'm 31 years old and last March, I was diagnosed with mmmt. I finished my chemotherapy last July. And I just had a ct scan to check status of tumors. I'm hoping it will joy recur again.  I seem to be one of the youngest to get this kind of tumor, I'm not sure. But I'm reading through all the messages and I can see that there is hope. Thanks.