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Need advice, help, thoughts on treatment/clinical trial - stage 1A MMMT

Hybridspirits's picture
Hybridspirits
Posts: 141
Joined: Nov 2012

I have been doing great getting used to this new diagnosis,  thanks to all of you.  However, 

Here is my stress.  I am going to Dana Farber tomorrow per my request before the tumor board met. My gyno oncologist was very supportive and felt it was a dot the eye appt as she sees the tumor board recommend the standard carbo/taxal (sp?) sandwiched around external radiation.  But to ease my mind i should go.  So she made the appt before the board met.  She even said make it a day and go for lunch.

when the board met they reviewed my case and thought that since it was Stage 1A ( no lymph node involvement and the number taken (61 pelvic and 20 arotic nodes) all negative incuding the wash etc.  ) they also didn't see any real invasion of the uterus other than the 4CM polyp that formed from the tumor. I believe it barely went into the wall of the uterus),they thought was a good candidate for an active  clinical trial.

 

I finally got a hold of the clinical trial number the tumor board was suggesting.  On clinicaltrials.gov it is GOG-0261.  The title is A Randomized Phase III trial of Paclitaxel Plus Carboplatin versus Ifosfamide Plus Paclitaxel in chemotherapy-Naive Patients with Newly Diagnosed stage I-IV persistent or recurrent Carcinosarcoma (Mixed Mesodermal Tumors) of the Uterus, Fallopian tube, Peritoneum or Ovary

 

The last thing i wanted to add to my life was this decision.  I am far from a doctor and have little knowledge on how to even make this decision.

the trial is a random trial with one group getting the first set of drugs and the second the second set as in the title above.  It is also my understanding that there isn't any radiation included in this trial. I am not sure why they don't want to give me radiation other than maybe since the tumor was removed and everything else was negative for cancer maybe there isn't anything to radiate?  I remember reading a post form someone that said their dr stated that only time he saw recurrance was when they didn't do the radiation? or maybe it was radiation and chemo?  My goal is to live a long and enjoyable life and only want to the best treatment to give me the best shot at this,  what I am sure we are all striving for.

what i am curious has anyone been approached with this trial or any others?  This one  was started on 8/2009.

did you have any discussions with your doctors on the standard treatment? versus others

I invite all thoughts, comments, information,  anything to help me through this decision I didn't think was even going to be on the table, or even bring to Dana Farber tomorrow.  I did research my dr at Dana: Farber Suzanne Berlin.  Been in practice since late 90's so has a lot of experience in complex gynocological cancers.  She teaches at Harvard Medical School.  So hopefully her experience is helpful

I will add what I find out from Dana Farber tomorrow.  Till then to keep my stress down I go back to all the positive threads I have read here and thank everyone for being so supportive.

 

hope everyone's Holiday has been enjoyable

thanks, Sharon

 

 

 

beila
Posts: 97
Joined: Sep 2012

my understanding is that there is greater recurrence in the vaginal vault without radiation

The radiation is very localized...tubes in the vagina, called "brachytherapy", as opposed to total pelvic radiation.

I'm not sure why consider a clinical trial as the 1st line therapy, when the standard therapy is so likely to succeed in an early case like yours.  But it will certainly be interesting to learn whan Dana Farber recommends tomorrow

 

Please let us know,

Best of luck,

Beila

 

 

ConnieSW's picture
ConnieSW
Posts: 536
Joined: Jun 2012

Have never been my forte when it comes to myself.  No matter what you choose, at least you will nothat you really looked into all the possibilities.  Since  this trial has been going on for 3 years, is it possible to know how it is trending or is that not revealed until a certain point in time?  Will be waiting to hear what you choose.

txtrisha55's picture
txtrisha55
Posts: 422
Joined: Apr 2011

I am treated for stage 3c1 MMMT with 1A tumor in the uterus and 1 lymph node involved with 2 microscropic cells, everything else was clear, at UT Southwestern Medical Hospital in Dallas, TX and Simmons Cancer Center with Dr. J. Lea.  She offered this clinical trial to me back in Aprila 2011 when I was DX.  She gave me all the paperwork on the trial and told me to read it, make questions and we would discuss the pros and cons. My family and I read everything, made our questions and talked it over with her and one of her Fellow Drs.  The Ifosfamide part of the paperwork scared me really bad as one of the side effects although slim chance was death.  I thought that I wanted to live but not with something that might kill me in the process, so I declined the trial.  We did ask Dr Lea what would she do.  She said she would recommend just the carbo/taxol with no radiation since everything had been removed and there was nothing to radiate left.  That is what I did.  6 rounds of carbo/taxol spaced out every 21 days.  Loss of hair was the only side effect I had, which for me was no big deal, with some it is a hard ship.  I am 16 months NED.  I go next month for another 3 month follow up.  The main thing is to go in witha positive attitude.  Yes, you can have bad days but as my sister says a lot, put on your big girl panties and deal with it.  Yes I have cancer but I dealt with it and if it comes back I will deal with it again till I have no breath to do so.  I live my life.  I have strong faith, family and friends and back at work and planning my daughter's wedding next month.  I enjoy my 4 year old grandson and love spending time with him.  I will add you to my prayer list and hopefully some of this will help you in your decision.  There are others more informative than me on this site and this is just my story.  Wishing you luck tomorrow. trish

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I was diagnosed with this same type of uterine cancer, which isn't the normal "garden variety", but very aggressive.  As such, must be treated a bit different vs.the general uterine type cancer. I was diagnosed stage 3C, due to cancer being in 1 pelvic lymph node and had 6 rounds of carboplatin and taxol, plus sandwiched between with 33 rounds of external pelvic radiation.  My doc told me this is the general protocol for uterine, plus he bumped up my dosages a bit more due to the aggressiveness of the cancer type.

 

I truly can't say much about clinical trials, but if memory is correct, many are used on higher stage patients.  Your cancer was truly contained in the uterus, whish is great for you.  

 

Must agree with Beila on the RECURRENCE IN VAGINAL VAULT WITHOUT RADIATION...I've heard this as well.     Plus agree about the early case or stage as you are, possibly be just fine with the standard protocol like I had. 

 

In summary, plse understand this MMMT isn't a lower grade, as ours is graded 3 and must be dealt with differently due to it's aggressiveness vs. normal uterine.  So...keep this in the back of your mind when speaking with the professionals on your options.   

Let us know how your appt works outs at Dana Farber tomorrow.  

 

Best to you in your decisions...

Jan

Teamkelly
Posts: 50
Joined: Sep 2012

My sister in law has stage 3C1 MMT also known as carcinoma sarcoma. she was diagnosed in September and had surgery it was thru the uterine wall, in one ovary and 2 lymph nodes. We went to Sloan Kettering in October 2012 and met with one of the doctors (Dr. Hymen) who wrote the trial and sits on the international board for uterine carcinoma sarcoma treatment.  What he told us was that at this stage in the CT ifosamide is the standard of care equal with carbo taxol.  If you want to be followed more closely with more frequent test, etc... Go for the trial.  My SIL decided to go carbo/taxol because she did not want to go to all the apps necessary in a CT and wanted to get started ASAP without all the preliminary labs for a CT, she has her 4th Carbo/Taxol treatment this Friday and has done great, no nausea, no weight loss, a little peripheral neuropathy but she will be 67 this Thursday and works out with a personal trainer twice a week and walks everyday.

My take on the hour spent with the doctor is that either protocol is fine and outcomes are about equal.  Hope this helps.

Nicki

Hybridspirits's picture
Hybridspirits
Posts: 141
Joined: Nov 2012

thanks so much for sharing.  This is exactly what I found out.  I met with Dr. Suzanne Berlin and we discussed the trial. The purpose she described was to prove that the newer drugs/  carbo/taxo are just as effective as the older with less side effects.  the issue with the trial is that it is random so you could be put with the older drugs and than you have other drugs to deal with that counter the older issues.  We agreed that this wasn't for my situation

I start my chemo this friday,  they just called me and asked me to start a week earlier as my healing is great.  Of course my mind was thinking next week and not this week so I am so glad to read how well your sister n law is doing.  Has she been working out with her personal trainer all through the treatment?  also was she taking anything for the neuropathy like L-Glutamine or B vitamins

i also like to keep active so hoping I wll be able to continue. I just have to balance this with work.

 

thanks again for sharing and pass on any helpful hints to make this process not as scary

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I shouldn't be surprised you're asking about working out, as your profifle pic has you holding a bike.  I'm an avid workout person, as used to be a huge runner until I established some major lower back pain this year....so running is off my schedule.  

 

Wanted to express to you how important working out is for our bodies before, during and after treatments.  I would endure the chemo session and have walks starting the next day, then by end of the week in the gym using the equipment.  I found the work outs to keep me full of energy and know they force blood flow throughout our bodies.  As much as I worked out, doesn't mean everyone can or should as we all are individuals who might not get thru a treatment as well.  If we feel tired and ill, gosh don't force our bodies...best to listen.  

 

Did attend a good lectures by a physician who has done extensive research on exercise and cancer.  Bottomline, exercise helps us get thru the treatments and in many cases has potential to avoid recurrence.  

 

Best advice given to me -- listen to your body!  If it tells you it's tired, don't force movement, but rest.  Chemo and radiation are hard on our bodies, so be kind to ourselves.

 

Good luck to all the troopers enduring treatments!!

Jan

Sisters three's picture
Sisters three
Posts: 149
Joined: Nov 2012

I hope to hear you were able to work out as quickly after treatment as Jan was!!!!!!

I believe
Posts: 37
Joined: Oct 2012

Hi, My mom (72 years old)  was diagnosed having MMMT (early stages I or II) in September 2012. No radiation was proposed and only 4 sessions of Chemo Carbo/Endoxan, she now finished 3 sessions of chemo and still one to go and she s doing fine with no side effects not even hair loss (only constipation for 2 or 3 days after treatment ). Will do CT scan after the treatment and hopefully the results will be NED.

I believe
Posts: 37
Joined: Oct 2012

Hi, My mom (72 years old)  was diagnosed having MMMT (early stages I or II) in September 2012. No radiation was proposed and only 4 sessions of Chemo Carbo/Endoxan, she now finished 3 sessions of chemo and still one to go and she s doing fine with no side effects not even hair loss (only constipation for 2 or 3 days after treatment ). Will do CT scan after the treatment and hopefully the results will be NED.

I believe
Posts: 37
Joined: Oct 2012

Hi, My mom (72 years old)  was diagnosed having MMMT (early stages I or II) in September 2012. No radiation was proposed and only 4 sessions of Chemo Carbo/Endoxan, she now finished 3 sessions of chemo and still one to go and she s doing fine with no side effects not even hair loss (only constipation for 2 or 3 days after treatment ). Will do CT scan after the treatment and hopefully the results will be NED.

I believe
Posts: 37
Joined: Oct 2012

Hi, My mom (72 years old)  was diagnosed having MMMT (early stages I or II) in September 2012. No radiation was proposed and only 4 sessions of Chemo Carbo/Endoxan, she now finished 3 sessions of chemo and still one to go and she s doing fine with no side effects not even hair loss (only constipation for 2 or 3 days after treatment ). Will do CT scan after the treatment and hopefully the results will be NED.

ConnieSW's picture
ConnieSW
Posts: 536
Joined: Jun 2012

My fingers are crossed for your mon

I believe
Posts: 37
Joined: Oct 2012

Thank you ConnieSW, I am thankful that my mom is feeling strong and positive and she's very happy now because my wife is pregnant...I will keep you in my prayers.

ConnieSW's picture
ConnieSW
Posts: 536
Joined: Jun 2012

That is wonderful news.  I am so happy for you all.  My goal is to give my young grandchildren their Gram for as long as I can.  My grandparents meant so much to me and I was lucky enough to have them with me into my 30's

I believe
Posts: 37
Joined: Oct 2012

I am confident that you will achieve your goal with your positive attitude...My goal is to keep my mom happy even if it takes to have a child each year :)

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