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New member of the mmmt club

Big Apple
Posts: 11
Joined: Jan 2018

hi ladies

i am 65 and had a hysterectomy on 1/19/18 pathology shows st 2 carcinocarcinoma my cervix is involved. I’m with a gyneonc surgeon at the university hospital in Pittsburgh PA. She wants to start chemo in the hospital where I stay 3-4 days because it is so toxic and can cause bladder bleeding. I,m scared any thoughts for me?   sShe says it is a rare tumor and a rare stage.

janaes
Posts: 705
Joined: May 2016

Hi i had mmmt uterine cancer too. The cancer word is scary but you can do this. Take it a day at a time. Come. Here forvsupport. It really does help. When your frusrated or stick share it hear and youll get validated and you wont feel so alone. Ive been done with tteatment for just over a year and had MMMT stage 2 grade 3. There is hope.

Janae

Big Apple
Posts: 11
Joined: Jan 2018

Hi janaes

Thank you for your support and encouragement. I.m at the beginning of this journey and am so happy not to be alone.  I will be posting more as I gather more info.

saltycandy13
Posts: 167
Joined: Dec 2017

Hi!  I had my hysterectomy the same day as yours.  I am sorry to hear of this diagnosis.  I will be supportive for you all I can.  I wish you GREAT success with your treatment.  Hang in there.  You couldn't meet a better, more wonderful group of beautiful supportive ladies.  They are the best!

 

xoxxo  Much love and light to you

Karen

Big Apple
Posts: 11
Joined: Jan 2018

Hi salty

Thanks for your support and kind words of encouragement. 

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

I'm sorry to hear of your diagnosis, but you've come to a good place for information and support from others who have the same or other, equally serious forms of uterine cancer.

I was diagnosed with MMMT (uterine carcinosarcoma) in November, 2016 and staged as IIIB Grade 3 following surgery in December.

I was interested to read that your doctor was recommending treatment that required a hospital stay, as I also had four cycles of Ifosfamide/Mensa/Doxorubicin that required me to stay in the hospital for 3 days, every 21 days. These cycles followed my first four Paclitaxel/Carboplatin cycles that were given on an outpatient basis.

In my case, the Mesna was given with the Ifosfamide to prevent any damage to the bladder.

The good news is that I actually felt fine while I was in the hospital getting the treatments. I read, did some computer work and visited with family and friends that stopped by.

But I must admit that I had very severe nausea and fatigue a few days after the first Ifosfamide/Mensa/Doxorubicin treatment (much more than I had during the Paclitaxel/Carboplatin cycles).

To help prevent the same level of side effects after the remaining cycles, my oncologist added an additional anti-nausea drug on my last day of each hospital stay and also had me take some steroids for about 3 days after treatment. But I still found that I needed some additional fluids and antiemetics the week following the hospital stay.

I don't want to scare you about the treatments, especially since you may not have the same side effects that I did. But I want to share that if you have side effects, there are steps that the oncologists can take to lessen their severity. Don't hesitate to call the doctor's office and tell them if you have difficulties. When they say call them if you need to, they really mean it!  I tried to tough it out the first time and suffered a lot more than I needed to.

So far, the treatments seem to have been effective for me. The CT scan I had in July 2017 after completing the eight chemotherapy cycles did not show any evidence of disease. The scan I just had in December was also clear. 

Research is still going on as to the best treatment protocol for MMMT cancer, although the four drugs I received have all been used in varying combinations for many years. Your doctor may recommend a different set of chemotherapy drugs or give them on a different schedule. But MMMT cancer is an aggressive cancer and doctors manage it accordingly.

But we've all made it through the treatments, and while we may not be the exactly the same as we were before cancer, life is still enjoyable and meaningful.

Big Apple
Posts: 11
Joined: Jan 2018

Hi cmb

Your response was so wonderful!  I cried tears of relief just knowing I am not alone.  Thank you my husband also read your post and feels better as well.  I plan to be posting more as things occur.  Right now I’m still doing love nox shots daily and getting more mobil after surgery 1 week ago today.  This board and the ladies on it are helping me to start believing there is hope,

txtrisha55's picture
txtrisha55
Posts: 676
Joined: Apr 2011

 

I was 54 in April 2011, when I was told I had MMMT after a D&C procedure.  I went to a Gyn Onc Dr that did a complete abdominal hysterectomy which removed all female parts plus the Omentum.  I had a port installed before the first chemo treatment and then had six rounds of Carbo/Taxol, one every 21 days.  Yes the Taxol made me go bald, for me that was no big deal because I like short hair.  I went back to work in June so was off 2 months.  Worked through the chemo, took off those days I needed to when the pain was too much but that was only a few days every 21 days.  You will find that you are stronger than you think you are.  I did not have radiation.    I was stage 3C Grade 3 cancer.  Good Luck to you.  trish

 

skshello
Posts: 13
Joined: Jun 2018

I am 69, and this is really new to me.  I have ordered a couple of wigs, in case I lose my hair ...  They tid a complete hysterectomy on me, and also took the omentum.  I wondered why they did not take the lymph nodes, but he said there was no need...all came back with no cancer, except the FOCI (?).  He said that took me from stage 1 to stage 3 ..not sure why... so chemo here I come, but no one has contacted me yet on that.  Trish, how long did you lose your hair?  Did it grow back as it was before?  You are so brave to share your story, and it is really encouraging to me ...  Sandy

LisaPizza's picture
LisaPizza
Posts: 169
Joined: Feb 2018

I didn't have MMMT (I had adenocarcinoma), but I had the chemo and am now in the regrowth stage. My last chemo was 4/3 and I have basically a buzz custom now. I have some spots that are lagging a bit, but they are now starting to fill in.

 

The eyebrows came back first (were  also lost late, in the latter half of my 6 cycles, as opposed to my head hair, which dropped after the first cycle). The eyelashes are coming in, but still short.

LisaPizza's picture
LisaPizza
Posts: 169
Joined: Feb 2018

I didn't have MMMT (I had adenocarcinoma), but I had the chemo and am now in the regrowth stage. My last chemo was 4/3 and I have basically a buzz custom now. I have some spots that are lagging a bit, but they are now starting to fill in.

 

The eyebrows came back first (were  also lost late, in the latter half of my 6 cycles, as opposed to my head hair, which dropped after the first cycle). The eyelashes are coming in, but still short.

LisaPizza's picture
LisaPizza
Posts: 169
Joined: Feb 2018

I didn't have MMMT (I had adenocarcinoma), but I had the chemo and am now in the regrowth stage. My last chemo was 4/3 and I have basically a buzz custom now. I have some spots that are lagging a bit, but they are now starting to fill in.

 

The eyebrows came back first (were  also lost late, in the latter half of my 6 cycles, as opposed to my head hair, which dropped after the first cycle). The eyelashes are coming in, but still short.

Big Apple
Posts: 11
Joined: Jan 2018

You have given a new kid on the block some hope!  the ladies on this board are so strong and inspiring to me.  I am 1 week postoperative and getting stronger every day 

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

Txtrisha55 is a long-term survivor of this rare cancer who is kind enough to continue to post on this site many years after her successful treatment. She gives all of the ladies with MMMT cancer hope for a good outcome. 

NYLMP68
Posts: 6
Joined: Feb 2018

My mother (74) has been through the surgery, chemo/radiation - it then went to lung and she had surgery for that. All scans were seemingly good. Now its back and we have to decide to do more chemo or nothing. I would like to hear from others that went through the 2nd chemo. I don't know the right decision to help her with and I don't want her to just throw in the towel. The Dr. wasn't hopeful. Thank you. She has MMMT carcinosarcoma.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

NYLMP68, I think it is a good idea to get some 'feelers' from the ladies here to see what they have done, and we have quite a few ladies here who are on second and third rounds of treatment who may chime in, so your mother can make her decision.  Your family is in my prayers.

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

Although I have MMMT cancer, I have not had a recurrence since I completed front-line treatment last year. So I can't offer any personal experience on how your mother might choose to handle her recurrence.

But when I had my original surgery, the pathology report indicated that I might have Lynch Syndrome. This was later confirmed through genetic testing.

Last May the FDA approved the use of immunotherapy (Keytruda) for cancer patients with Lynch Syndrome who have already received front-line treatment but have solid tumors that have progressed following prior treatment and who have no satisfactory alternative treatment options. So if my cancer recurs in the future, Keytruda would provide me with a treatment option besides the typical chemotherapy or radiation.

https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm560167.htm

I think it's important to note that I didn't initially meet the criteria for Lynch Syndrome testing because my father was already in his 80s when he was diagnosed with colon cancer. And the only other cancer in my family was my mother's cervical cancer, which isn't considered to be hereditary. Therefore, I was fortunate that my treatment center asked that the testing be done on my tumor anyway, especially since I didn't even realize that I should ask for tumor testing.

Other ladies on this board have had other types of genomic testing to determine if a particular type of chemotherapy would (or wouldn't be) effective.

So before your mother makes a final decision about how to proceed, she may want to have some genomic testing, if she hasn't already had this done. Depending upon what the testing shows, she may have options other than traditional chemotherapy or the testing could show which chemotherapy is more likely to be successful.

NYLMP68
Posts: 6
Joined: Feb 2018

Thank you. I'm going to read about that now.

NYLMP68
Posts: 6
Joined: Feb 2018

How do I request genomic testing for mother? She has MMMT and Friday they gave her 6 months - I refuse to believe this.

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

Several ladies on the Board have used FoundationOne to test their tumors and see what treatments may be most effective. From what I've read here, it seems that some people first contacted Foundation One directly, while others' doctors took the lead in ordering the tests.

See https://www.foundationmedicine.com/genomic-testing/order for an overview of the order process.

Also, your mother's treatment center may have another testing company that they work with on a regular basis for this type of testing.

Finally, do check whether this type of testing is covered by your mother's insurance. From what I've read here, not all insurers cover this cost.

NYLMP68
Posts: 6
Joined: Feb 2018

Thank you CMB!

Armywife's picture
Armywife
Posts: 193
Joined: Feb 2018

I'm sure my insurance won't pay it, and we may not qualify for aid.  Does anyone know the cost of the testing if you self-pay?  I didn't see it anywhere on their website.

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

I created a new discussion topic for genetic/genomic testing. I hope that brings you more answers than having this topic under the "MMMT cancer" tag.

NYLMP68
Posts: 6
Joined: Feb 2018

Has anyone been given 6 months and advised that doing a second course of chemo with Doxin or other would only give them a couple more months? This is what I am getting regarding my mother. Has anyone done it anyway? I'm sorry for so many questions but I don't want to just give up and we have to decide now. They think the quality of life would not be good. I don't want to give up on her recovery - this just doesn't seem right - to lose her yet. Lisa

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

I believe that a number of ladies on the board have been given Doxil when their cancer recurs. However, they may not read or reply to this question since they don't have MMMT cancer, but one of the other equally serious cancer types.

I suggest you create a new discussion topic on the board with a more general question such as "Need Help with Treatment for Cancer Recurrence (Doxil or other)" so that you can potentially draw in more feedback, not limited to just MMMT cancer.

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