Are there any other MMMT survivors out there?

Kvdyson said:

I'm so sorry to hear about your mother's diagnosis

Hi Kerrey, I'm so sorry to hear about your mother's diagnosis. I recall being in her shoes just last September. It is a very scary time but please know that you will have all the support that you need from us.

Has she had surgery yet? Mine was a TAH-BSO with 14 lymph nodes excised. It took me about 4 weeks to get back to feeling normal and back to work (part-time, desk job).

The stage and grade of her cancer tumor is very important to know. Mine was uterine carcinosarcoma (MMMT), stage 1b, grade 3. The information about the tumor will determine her treatment plan. My treatment was 6 rounds of chemo ( Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. I finished treatment in May and have had a clear scan showing no evidence of disease or "NED".

Is her doctor a gyn-onc with experience treating MMMT? At this early stage, I recommend getting copies of all her pathology and surgery reports for her files. They will come in very handy to refer back to and if you decide to get a 2nd opinion.

Also, she may want to consider taking a tape recorder to appointments or find out if her cell phone has an app to record them. There may be a lot of important information discussed and you don't want her to miss anything. I listened to my recordings again recently and realized that I had missed some very important things the dr. had said at the time.

Please pass on my wishes of good luck to her (and to you). She can do this and we will be here to support you both! Wishing you both peace and strength, Kim

Kerry,  welcome to our board.  Its a board thats not so fun to be in, but support is avalible. I was diagnosed with MMT stage 2 grade 3 uterine cancer.  I am currently duing chemotherapy and have one more left to do in two weeks and then i start radiation   I  agree with Kim.  Having the pathology report was very helpful to me.  Reading older posts was helpful too.  I found much support from other women on this  board.  There is also a Yahoo MMT support group.  I am currently trying to get involved.  It takes approval so I am waiting to hear from them. You could look into that as well.  Finding the right doctor ment a lot to me. Having a tumor board help in my decision.  I just asked my doctor and he set it up for me and then I called him and he told me the results. 

Best of luck going forward, Janae

Kerrey said:

MMMT Info

Hello all. My mother has been diagnosed with MMMT clear cell ovarian cancer. She is 53 (52 at time of diagnosis). We are searching for any available information, resources, and to connect with others, as you know this is a very rare cancer with limited information out there. She was diagnosed in Feb. 2016 with stage III ovarian MMMT clear cell. She also tested positive for BRCA2, the gene mutation for ovarian and breast cancer. She just finished 18 weeks of chemo with taxol/carboplatin. At this point we are waiting for further testing to see where she stands and searching for other treatment options to fight this. Any information you have would be greatly appreciated as well as to hear your stories. I am going to get her signed up on here as well and would like to help connect her with others experiencing this battle. Thank you.

Here is the link to the Yahoo group:     https://groups.yahoo.com/neo/groups/UterineMMMT/info

There is also a Facebook group, if you or your mom are on Facebook:    https://www.facebook.com/groups/carcinosarcoma/

namedropper said:

MMMT survivor

I am 23 months NED. I was stage 2 grade 3 with MMMT uterine cancer. I had surgery and 5 rounds of chemo. I am going for more CT scans on the 26th of Sept because they think something might be brewing because my CA 125 has been going up every month for the last 3 months. I have my fingers crossed.

I pray your tests show no signs of cancer, keep us posted on your condition, in the meantime I will keep praying for you. My CA125 is always normal so they cannot track my cancer other than scans and there is no guarantee they can see it with those since it looks like normal cells and I am scared of frequent CT SCANS being exposed to so much radiation and that is all they ever offer. I didn't think I would find another mullerian so I am excited about finding this site. I live in a rural area and nobody is familiar with it. Wishing you all the luck in the world, keep strong I am rooting for you.

Editgrl said:

jinkies

Welcome to the board.   Sorry you had to find us, but I'm glad that you did. as there is a lot of information here.  

Did your surgeon not remove any lymph nodes at all?  Have you had a post-treatment scan?  

If you are not happy with your local oncologist, have you considered getting a second opinion?  If you don't already have them, it would be helpful to have all of the pathology and scan reports for your own records so that if you do seek a second opinion, you already have those things in hand.

How you are feeling now?

Also, you might consider starting a new thread.  This one has so many entries that it's tough to find and respond.

Again, welcome.  There are several women on this board with carcinosarcoma/mmmt, some long-term survivors.  No reason you can't be one of them!

I live in a rural area and had a right ovarian tumor that was torsed 4 times and I was in a lot of pain so they had to do emergency surgery with a regular gynecologist at our local hospital. They did not remove lymph nodes because they did not see or feel any inflammation and the omentum looked good to them, so they didn't feel it had spread. It wasn't til we got the pathology report that they could see two tumors in the omentum and it was also in the washings. My oncologist sent me to Iowa city to see if his 18 week carbo/taxol treatments would be appropriate for my cancer. they suggested IP therapy with cisplatin and taxol which I agreed to anyway long story short, they botched my port it wasn't even in the right place, infiltrated chemo in my chest and infected my port all on the first visit, and I had to go back a few days later and have port removed and port site treated at our local wound center for debridement and antibiotics for infection. I never went back to Iowa City and had my 18 weeks CARBO/TAXOL done locally through my chest port. I have not had a post treatment CT scan yet because I have had so many CT's this year I am afraid of the radiation I also have BRCA2 and I don't repair my DNA so I am afraid of damaging cells and increasing my risk for cancer,and I am not sure they will be able to see the cancer on a CT because it is clear cell unless there is a large mass in there. Also my other problem is my CA125 is always normal it has never been higher than 14 even when I had my tumor, my last one was 6. I have tried several hospitals for a second opinion after chemo completed but they all say they don't have anything for me, no clinical studies available so they won't take me as a patient the last one I tried was Mayo in Rochester, Minnesota. My oncolgist doesn't want to try anything that isn't scientifically proven so he just orders CT'S and CA125. The combination clear cell and MMMT and ovarian cancer I think they don't want to touch you and they are probably waiting for a tumor to come back so they can give me more chemo and I don't feel that is the answer especially since they know my cancer tends to be platinum resistant. I have been taking supplements unknown to my doctor because he doesn't believe in them, improving my diet and exercising, but I could be doing more if I knew what. I feel you are given this devastating news from doctors and no real guidance on how to deal with it, sorry this post is so long, and thanks for the interest in my case.

Kvdyson said:

I am so sorry that you've had to go through this experience

Jinkies, I am so sorry that you've had to go through this experience but glad that you found us. We are a very experienced group of people who are willing to share our stories and advice. If you haven't already, you may also want to try checking out the Inspire Ovarian support group. It is also very active and the people there are wonderul.

My understanding is that CA125 is not a good marker for everyone so it's not too much of a surprise that yours did not move up even with active tumors. When did your chemo treatment end? Does your oncologist consider the treatment to have been successful enough to shrink the two tumors in the omentum? Or do you need to have a second surgery to remove them? Is your oncologist a gyn-onc with experience treating MMMT or Clear Cell?

Besides Mayo in Rochester, have you tried contacting any of the other large cancer centers like MD Anderson, Memorial Sloan Kettering or Dana Farber? I received a second opion from Moffitt after I was disagnosed with uterine MMMT in Sept 2015. They came back with a completely different diagnosis so I ended up getting a third from Mass General/Harvard which ultimately agreed with the first. I had surgery and front-line treatment and have been NED since June 2016.

There are so many new types of treatments but most won't even consider you until front-line has failed. Unfortunately, you may need to get another CT scan to prove that it did fail before they will consider you as a candidate. It is completely a personal decision, of course, but since you already know that you have cancer, it may be worth the risk of one more scan in order to help determine next steps?

Regardless of what you decide, please know that we are here for you and will support you in whatever way we can. Wishing you strength and peace, Kim

My treatment ended 8/4/2016, they took the omentum out when they did the hysterectomy in February and then that is when they found the tumors on it under the microscope. My doctor is a oncologist/hematologist and has not had a mullerian clear cell patient since it is so rare that is why he sent me to Iowa City for a second opinion and they were awful there. I was hoping my doctor would let me get a MRI instead of a CT but he is insisting on a CT even though my insurance was ok with it. He is assuming the chemo worked until we get verification it didn't. Each CT is the equivalent of 100 chest xrays and that scares me because of the BRCA 2 gene my body doesn't repair damaged cells and it sets you up potentially for more cancer. I have not tried calling MD Anderson yet because it will be out of network for my insurance and it is so far away, I live in Illinois. Do you think I will have to get a CT to go any further? I was thinking of trying the Block center in Skokie it will be all out of network but closer to my home. They don't make it easy for you to be a survivor that is for sure. What treatments have you had that worked and do you take supplements or a special routine. I would love to hear your story,

Soup52 said:

junkies, where in Illinois do

junkies, where in Illinois do you live? I live in the Peoria area and have a gynecologist oncologist at the cancer center there. He is Salvador LoCoco and is really great.

Jinkies,  as i read you post i was thinking about where i am at.  A little behind you.  I have one more chemo left to do which is next thursday.  I have some of the same fears you have.  I am having some back pain that got worse since my hysterectomy and hasnt gotten better so i went and saw my GP and she wants to do a MRI but im thinking of waiting until i talk to my oncoligist because since im close to the end of chemo i wanted to know if he was going to do some sort of scan after.  I didnt want to do too many scans because two of my doctors have said that the radiation that was given me 23 years ago for a different cancer was the cause of my current cancer.  Ive done some research and also know that having no pregnancies also is a risk factor for uterine cancer.  My two kids are adopted and didnt ever get pregnant so i feel that had something to do with me getting uterine cancer also.   I dont know what my doctor thinks yet (i am hoping to find out tuesday) but i do feel if he is okay with it, that some sort of scan would be benifitional for me just so i know. Anyways I hope you find the answers you need as you go forward with your journey. I hope you find a doctor you will like. 

Janae

Editgrl said:

MRI

Janae, if you're scared of radiation, the MRI is actually a better choice because it does not use radiation to generate the images, unlike CT or PET scans.

Thank you so much for your reply Editgrl.  I remember telling my GP on monday that i wanted to use the least amount of radiation as possible because two of my doctors told me that is what caused my cancer.  I think it was at the very least because of one other reason as well since i have done some research.  Anyways maybe that is why she chose to do an MRI not a CT scan. I hope so. 

Hi all, it is conforting for me  to know that some of you are cancer free. Briefly my mom got diagnosed with MMMT the past july and after having an historectomy and chemo, recently, she has been suffering of ascites , liquid was inthe abdominal (peritoneal) cavity.  Because of that she couldn't persue radiotherapy. Did any of you have that? and if yes, what makes it better? Unfortunatly my mom is in the hospital right now and she is waiting for a MRI. hoping for the best.  Your feedback is appreciated.  

jinkies said:

I live in the sterling/rock

I live in the sterling/rock falls area so I am about an hour and half away from Peoria. What cancer center do you go to. I never thought I would find someone so close that has this rare cancer cell type.

It is the Illinois cancer care center right in Peoria, Il on route 91. If you have been to the shops at Grand Prairie, it is on the same road. My doctor is originally from Texas and is in high demand. He is the one my gynechologist recommended and referred me to. The center is independent and not associated with any particular hospital, so maybe it would fit in your insurance plan.

jinkies said:

Thank you for your response

My treatment ended 8/4/2016, they took the omentum out when they did the hysterectomy in February and then that is when they found the tumors on it under the microscope. My doctor is a oncologist/hematologist and has not had a mullerian clear cell patient since it is so rare that is why he sent me to Iowa City for a second opinion and they were awful there. I was hoping my doctor would let me get a MRI instead of a CT but he is insisting on a CT even though my insurance was ok with it. He is assuming the chemo worked until we get verification it didn't. Each CT is the equivalent of 100 chest xrays and that scares me because of the BRCA 2 gene my body doesn't repair damaged cells and it sets you up potentially for more cancer. I have not tried calling MD Anderson yet because it will be out of network for my insurance and it is so far away, I live in Illinois. Do you think I will have to get a CT to go any further? I was thinking of trying the Block center in Skokie it will be all out of network but closer to my home. They don't make it easy for you to be a survivor that is for sure. What treatments have you had that worked and do you take supplements or a special routine. I would love to hear your story,

Hi Jinkies, I'm not sure about you having to get a CT to go further but if it is required, then your doctors should be willing to go over all the risks/rewards with you so that you can make an informed decision.

As for me, I was diagnosed with stage 1b, grade 3, uterine MMMT in September 2015. Surgery was TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor removed. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. 

I finished treatment at the end of May 2016 and have been NED since June 2016. Side effects of treatment were minimal and easily managed. My gyn-onc had sent a piece of the tumor out for testing with various chemo meds and the Ifex/Taxol combo was most effective in the petri dish so that is why he went that route with me. The test is called ChemoFx by a company called Helomics.

Besides calcium + vitamin D, I don't take any supplements or eat any special diet. I exercise daily and try to keep a healthy BMI but other than that, I've given up on thinking that I have any control whatsoever over how my cells divide. This is my second cancer diagnosis (the first was malignant melanoma). I have no family history of cancer (except for my mom who smoked and died from lung cancer). I have an appointment with a genetic counselor in November and am hoping that that sheds some light on my predicament.