Recent MMMT Diagnosis - Seeking Advice and Support

TeddyandBears_Mom said:

Great to hear from you Trisha

Great to hear from you Trisha. I hope all is well. Congrats on your continued dance with NED.

Love and Hugs,

Cindi

Thanks, yes things are still going good.  I am still working, my sister is ok, my daughter, her husband are ok. My grandon is awesome.  There are days that I can get through were I do not think about me having cancer but since I have the reminder on my tattooed on my arm it reminds me.  I am still here.  I feel like there will be not recurrence but only One knows what my life will be and what the end will be.  I keep a positive attitude.  I am on yearly checkups with my gyn onc dr now and go every August.  So far so good.  It is sad to see that this disease still has no test or cure.  So many new women getting it, so many women being told it is the effects of menapause, and just go home.  When are the drs, going to say, it could be that but let's do some more testing and research to make sure.  But then the women, and I am one of them, do not know about uterine cancer, so that is not on their radar.  It's not like breast cancer, feel a lump "light bulb" get to the dr to get it checked.  This is internal and has the same symptoms as a period a lot of the time.  I have a friend at work that was having a lot of pain and bloating, I told her to get to her dr, she waiting two years before she went.  It was not cancer but she suffered 2 years before doing something. When I started bleeding after not having a period for several years I was at my dr office within 3 days.  I then had to wait 2 weeks for surgery for a D /C, but I put it in motion.  I was not thinking about cancer and was shocked when the results were cancer.  I had a great gyn onc dr. Everything moved fast after the pathology from the DC.  Meet with the gyn onc dr on a Monday had complete hysterectomy on Friday.  Started chemo 30 days later.  Went back to work in 2 months of surgery, took off during the chemo treatments, went back to work full time in Oct.  It can be done, there is hope, keep a positive attitude and live your life everyday.  Praying for all the women and their caretakers on this site.  trish

txtrisha55 said:

I have not been online for

I have not been online for awhile but thought I would respond on this thread.  I was dx in 2011 with grade 3stage 3c1 MMMT.  I had surgery. I had 6 rounds of chemo of carbo / taxol and no radiation.  It has been 6 1/2 years with no recurrence.  There is hope.  Trish

So good to hear your story Trish. That gives me hope. My diag/stage is the same. Start first chemo in 2 days. Planning on returning to work 12/19 and will take the 5 days off following each of the remaining 5 rounds. How are you feeling? So glad to hear you are down to annual checks. I'm trying to keep positive. 

txtrisha55 said:

 

 

I can only speak for myself....the only thing that kept me going was that I had a positive attitude.  When I found out, I was a basket case for about 30 minutes in my office at work with the door closed.  I cried, I looked on the internet, which made me cry even more by what I read.   Then when I finished crying, I told myself what I had read was not me, I do not have an expiration date stamped anywhere on my body, there is only One person that knows the when, where and how I will die and this is not the day.  I told myself “Put on your big girl panties and deal with this and this too shall pass”.  Did I still have those days when I went down in a spiral of self-pity and doubt yes I did but each time I did, I would pull myself back up.  When my dr told me grade 3 and stage 3 and that it had spread outside the uterus, I told myself the reason was that I had had a DnC two weeks before the hysterectomy and that is why a two microscopic cells was found in one lymph node.  The tumor inside the uterus was a 1A but because of the those two microscopic cells it turned to Stage 3C1.  I refused to believe that it had spread.  I went through chemo with no complaints except for the muscle hurting; I shaved my head bald when my hair started falling out.  I would shave my head ever other day so I did not get stumble.  I wore my bald head proudly.  After 5 years I got my tattoo on my left arm which is my badge of honor to myself.  It is my picture on here.  I truly believe that it was my attitude and refusal to give into to everything that helped me through it.  But this all goes back to this is my story and my journey. 

 

Everyone is different, every cancer is different, every treatment and the reaction to it is different.  This is your journey and you have to decide how you are going to go through it.  Drs can give advise, nurse are there to help, even the chemo treatment center nurses are there to help you.  I do not know if you have a port yet, if not get one, do not take the chemo through your veins as the chemo does damage them.  They will give you shots before the treatment to help with nausea, allergic reaction to the chemo, drink lots of water, take a laxative as chemo does make you constipated.  Rest when you feel like it but try to walk/exercise when you feel like it.  Eat healthy.  Wishing and praying for you. trish

 

thank you for your ideas Trish. I got the port put in last week and am starting chemo tomorrow morning. I DID let the depression take over for quite some time but have pulled out of it. I will keep your words in my head-positive outlook. I let my spirituality go for a bit but now have reconnected to my faith which makes a big difference. I so appreciate everybody's ideas and words of encouragement.

NYLMP68 said:

Thanks for the http://gcsproject.org link and I have questions

My mother was diagnosed in mid 2016 - had the surgery, chemo, and radiation. Scans were great then went to lung and had surgery in Nov to remove. She started having pain in January and after some ER visits with scans it shows an enlarged inguinal lymph node. Her oncologist referred her to Johns Hopkins Dr since she is better with this type of cancer. Well - she in my opinion was not helpful or hopeful. The choice is to do the Paclitaxel and Carboplatin again or that with a 3rd drug which I forget the name or nothing at all. She said there were no clinical trials available as she keeps up to date on them all. I'm at my wits end and my mother is in so much pain with only acetainphen 3 given as pain management. Do we have options other than what I mentioned? 

As I mentioned in an earlier post, I haven't experienced a recurrence of my MMMT cancer (yet) so I'm sorry that I can't be more helpful to you right now. And I'm not sure how many ladies with MMMT recurrence are active on the board at the moment. Lately I've seen more posts from women who are recently diagnosed. Sometimes ladies will take a break from the board for a while if they aren't having any symptoms or treatment.

So if you aren't able to connect with someone here who can share their experiences, you may also want to check out the Yahoo group that is specifically for women with MMMT cancer and their families. You do have to submit a request to join the group. It can sometimes take a few days to be approved. Here's the link to that group:

https://groups.yahoo.com/neo/groups/UterineMMMT/info

Regardless of what decision your mother makes regarding future treatment, I really hope that the doctors are able to relieve her pain right now. Please make sure the doctors know how much she is suffering. Some people (me included) tend to downplay the degree of pain they are feeling and so the doctors don't get an accurate understanding of their pain level. I really had to change how I described the amount of pain I was in during treatment so that the doctors could advise and treat me correctly.