Recurrence MMMT after chemo treatment. What´s next?Apparently nothing

Yes for your own sake and for your Mom's sake I hope you will get a second opinion.  You should know realistically what she (and you)  is facing. No one doctor knows everything. You owe it to yourselves to use your medical benefits to get the answers you seek. I will be thinking of you both.

Cheers originally posted her mother's story "Recurrence MMMT after chemo treatment. What´s next?" on January 21, 2019 and received several responses that day. Since those posts were lost and may provide useful information to others in the future, I've recapped them below:

Cheers originally wrote:

Hello to all you brave women,

  Right before starting my story I´d like to do 2 things: one is to apologize for my English writing. I am Spaniard and English is not my mother tongue so, please, be indulgent with me. The second one is to thank you all for your posts and the strenght you get to pass me on. They have been my spotlight through the black tunnel in which I have been immersed over the past year.

  The person with cancer is my mother. She is 73 at the moment but she had an anal cancer 8 years ago. At that time she went through a coadyuvant chemo treatment (don´t remember now the type), radiation (26-8 sessions) and a surgery that left her with a colostomy for the rest of her life. Again after surgery she received more chemo (infussion and pills) and, fortunately, she "recovered" from all this process.

  Life smiled at us and cancer seemed to be gone in every check-up. Until Oct-Nov 2017, when my mother started to spot. At the beginning doctors did not find anything but, finally, after a long story of misunderstanding and administrative incompetence (which delayed the diagnosis almost 2 months), they detected a generic adenocarcinoma. She had a total hysterectomy where the cancer turned to be another primary one: carcinosarcoma or MMMT s.II-g.3 and, according to the oncologist, "very likely" to have been caused by the pelvic radiation for the previous tumor. She, the oncologist, seemed to be very optimistic because the tumor was placed just in the uterous. In this way she prescribed 4-6 chemo sessions (carbotaxol-cisplatine), depending on her body reaction.

  However things were not gonna be that easy. 1 month after surgery, and before the chemo, the ginecologist saw something the vaginal cuff and, of course, it turned to be a recurrence. The 4-6 sessions became 6 complete ones. Well, we thought, we can accept it but at that very moment, and not before, is when I was aware on how agressive this tumor may be.

 But doctors never explained us anything about this type of tumor. Nevermind, the outcome is that my mother went thourhg the 6 sessions which left her totally devastated (serious neurophaties, lack of mobility and loss of muscle mass)

 But the worst was still to come... In all this process my mother complained about a continuous spotting. By the end of chemo the TC and MRI did not show evidence of disease but, two months afterwards (i.e. last Friday), the gynecologist found again a recurrence in the vaginal cuff, JUST 2 MONTHS AFTER finishing the treatment. How could it be possible? Now my mother and I are totally demoralized.

  At this point we are waiting for the oncologist and the gynecologist to discuss the next treatment to follow. But if chemo did not work... what can work in a case like this?

 Apparently radiation and chemo are not on the table. I have read many of your stories and it seems that other treatments have been effective for you.

 Any of you or any other person you know have had through a similar process as my mother? The only thing that gives me some hope is that, apparently, the disease has not spread. But, honestly, sometimes I have the feeling that my hopes are based on my fears, and nothing else, because this tumor speedness is really scary.

  Thank you for all the support you have sent me through the Atlantic. All the information and hope I currently have is thank to this discussion board.

  Love

 Note that MugsBugs kindly reposted this message without all the extraneous formatting code that was included by accident in Cheers' post.

Northwoodsgirl responded:

 Cheers,

 Thanks MugsBugs for cutting and pasting the original post from Cheers about her dear mother. Cheers if you can ask your Mother’s Oncologist/gynecologist to write down for you what treatment protocol or protocols they are considering and the probability of success. Sometimes doctor’s don’t take the time to write down and clearly explain what treatment, timeline, and what surveillance will be done as the treatment is given to determine the effectiveness.

 My heart goes out to you. My Mother also suffered from uterine cancer at the age of 72 years old. She sadly didn’ t survive. I wish I knew then what I know now about uterine cancer and treatment options. There is a website in the US referred to as “NCCN” that has cancer treatment protocols by type of cancer. That site shows how reoccurrences are treated using a standardized treatment plan. The other thing of course is to ask about clinical trials that may help your Mom increase her chances of survival

 I didn’t have MMMT type of uterine cancer but others who do will hopefully see your post and respond  I hope that someone from the American Cancer Society Discussion Board will be able to eliminate the strange formstating at the beginning of your original post.

CMB responded:

 MMMT Recurrence

  As you and your mother have sadly learned, uterine carcinosarcoma (MMMT) cancer is an aggressive and very unpredictable type of uterine cancer. And because it is rare without a lot of dedicated clinical trials, there are variations in the treatments followed by different doctors.

  While carbotaxol-cisplatine are some of the chemo drugs used for uterine carcinosarcoma, unfortunately some patients, like your mother, don't respond to this combination. There are other chemo drugs used for recurrences of MMMT, such as Ifosfamide or Doxorubicin, but these regimens are a lot tougher on a patient's system and they may not be suitable for your mother now, given her current health condition

  Immunotherapy may be feasible for your mother if she meets certain criteria. For example, Keytruda (Pembrolizumab) can be used for recurrences after initial treatment, if the patient's tumor is shown by a laboratory test to be a microsatellite instability-high (MSI‑H) or a mismatch repair deficient (dMMR) solid tumor. This isn't common for MMMT patients, but it's certainly worth pursuing when conventional chemo drugs have failed.

  Tumor testing can also be used to identify other possible therapies, even if your mother's tumor is not MSI‑H or dMMR. One person on the Yahoo group for uterine carcinosarcoma (https://groups.yahoo.com/neo/groups/UterineMMMT/info) has written about using a testing lab in Europe – the RGCC Group. Since I'm in the US, I don't have personal knowledge about this company, but you can read more about it at:

  https://www.rgcc-group.com/

  Your doctor may use another lab in your country that does the same type of testing. Or the doctor may suggest other treatments. But given that the cancer is still localized, there is hope that this can be contained if the most appropriate therapy can be identified.

  This is such a difficult time for your mother and her family. She's lucky to have such a strong advocate in you.

Janaes responded:

 Hello, welcome to our wonderful group. I'm sorry you need to be here but its a very supportive group. I was diagnosed with MMMt uterine cancer stage 2 grade 3 May 2016. I had 6 rounds of chemo andd 3 bracytherapy apointments. So far i have had no evidence of desease.

  Im so sorry your mom has had a reacurance. That is not fun. Im glad you have been able to read others post and feel hope still. There are other options.

  I had a different cancer 20 plus years ago. I had alot of radiation right above my abdomen. The cancer was called Hodgkins lymphoma. Any ways my oncologyst told me my uterine cancer was caused by the radiation from my hodkins lymphoma. Some people choose to do external radiation fot MMMt cancer. My doctor and i chose to not to do it for me. I was good with that.

 Any ways I wish you and your mom the best as you go forward.

I understand that it very hard to wait, but you won't know more until the meeting with the oncologist on Monday to learn the results of the PET scan. If that test shows the cancer is still localized, then I would ask the doctors to explain more completely why they don’t think it can be treated.

I understand that radiation may not be possible and her previous chemo was clearly not effective. Are they afraid that trying another chemo drug or even immunotherapy (if she meets the criteria for that treatment) will worsen her condition? And would that really be worse than doing nothing – which, given the aggressiveness of her cancer, will undoubtedly make things worse?

And janaes' point about how you mother is feeling is the most important part of this process. Does she want to continue treatment, even if the prognosis may be poor? Or would she rather be made as comfortable as possible during this time so that she can enjoy her life without worrying about treatments?

I've had two parents who struggled with cancer, with my father dying from colon cancer and my mother dying from the long-term side effects of her treatment. So I know how difficult it is to watch a loved one go through this. But ultimately the decision about how to proceed has to be the patient's, no matter how much we love them.

Sounds like your doing good. On step at a time is great.  

Cheers said:

Update about my mother´s condition

Dear warriors,

I would like to update you about my mother´s condition. I told you that I was going to search for a second opinion from a gynecologist because our doctor did not give us much options regarding treatments. In the meantime my mother had a PET-CAT in which there was no evidence of disease in any other part of her body (thanks God!!). So her oncologists sent my mother´s file to the radiologist to check if she could receive some radiation in the recurrence (because she had a lot of radiation for the previous tumor). For the moment no news in this respect. In addition to this the oncologist was willing to help us with the second opinion and she will conctact another hospital for it. I am glad that things go forward, though we don´t know yet if the rardiation could be used on my mother. Let´s see if all of this will work out eventually. I has to because there are not other treatments on the table.

Thanks a lot for your supporting words. It really means a lot to me.

 

Yay for the PET results!!! I continue to be so happy that your mother has such a wonderful daughter advocating for her.

Cheers, glad to hear you found someone who is willing to work with your mom.  

I'm really sorry you have gone through so much stress but I have read that there are alternative therapies that sometimes work for people using certain herbs and supplements and restricting certain foods that contain glucose and glutamine.  If the doctors cannot come up with a plan, I would at least try it to see if there is any hope.  There is a guy named Christopher Wark who talks about this and a researcher out of Boston College named Seyfried who you can find on YouTube and they have books as well.   I'm using conventional treatment right now, but if that fails, I will try a natural option.  I think it works for some and not for others but its worth a try when the conventional way fails in my opinion. Maybe there are some members who have some experience in this.