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Any Uterine Carcinomasarcoma with Brain Mets survivors?

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

I'm writing for my sister il, diagnosed September 2012 urterine carcinomasarcoma (MMMT). Stage 3C, complete hysterectomy 6 rounds of carbo/taxol, no radiation. Diagnosed 1/5/14 with 2 brain mets, she had surgery and has had 1 treatment with cyber Knife and will have 3 more treatments this week. Kelly is doing great but we know this is serious stuff. Andy survivors out there with advice?

 

Nicki

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

I don't have any advice for you and Kelly.  Glad Kelly is doing  great.  Just want you to know you remain in my prayers.  I know tis is a difficult journey for all of you.  Try to find joy in each day.  In peace and caring.  

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

Kelly is doing so well, she has her last cyber knife treatment today and then surgery on the 14th to remove the lymph node in her abdomen, she will then start chemo again. She has great faith and a happy disposition, she encourages everyone around her. Thanks so much for your support and everybody else's on this site.

 

Nicki

ConnieSW's picture
ConnieSW
Posts: 562
Joined: Jun 2012

What amazing people you and Kelly are..  Keep up the good fight.

I believe
Posts: 38
Joined: Oct 2012

Hi there,

Mom also was diagnosed with MMMT in Sept 2012, had 4 rounds of chemo (carbo/endoxan) had recurrence in Aug 2013 in the skull (bone metastasis) and the tumor reached the brain, Had a surgery in Nov 2013 and 97% of the tumor was removed and we were supposed to start radiation after one month of the head surgery but unfortunately the radiation Dr refused because the MRI showed fast progression of the tumor in the brain. We started the first session of Carbo/Taxol a month ago but its not stopping the cancer, She's now half paralysed and can't even use her right leg and hand. 3 days ago she was still able to go to toilet with our help but now shes not able to get out of bed.

I am not saying that the same will happen with your sister but that's whats happening with us. The good thing is that she's not feeling pain but cries from time to time becuase she used to serve all the family and now she can't...

My advice for you and your family is to keep your faith in God and stay strong. Romans 14:8 "for if we live, we live for the lord, or if we die, we die for the lord, therefore whether we live or die, we are the Lord's.

 

Ro10's picture
Ro10
Posts: 1392
Joined: Jan 2009

So sorry to hear about the progression of you Mom's cancer.  I pray for peace and comfort for her and your family.  

RoseyR
Posts: 464
Joined: Feb 2011

If your cancer is recurring--or before it recurs, better yet!--I'd highly recommend seeing and consulting with either Nasha Winters, a brilliant naturopath at Namastehealthcenter.com in Durango Colorado or with Jeanne Wallace, a famous naturopath who specializes in brain cancer and treated the famous Dr. David Servan Screiber for his own brain tumor,, keeping him alive a decade beyond his prognosis.

 

Nasha Winters, a longterm survivor of stage III ovarian cancer, specializes in gynecological cancers.  Married to a biochemist, he keeps her apprised of which studies are well done and which are questionable.  She will order blood tests that your insurance will pay for IF your regular doctor agrees to order them for you.  Then you may consult with her by phone every two to three months; her fees are very very reasonable and she has quite a following.

 

Ladies, what we eat may make a huge difference in our prognosis!  I suggest you look at both these web sites (Google Dr. Jeanne Wallace and Dr. Nasha winters in Durango Colorado) to decide if your life is worth relying on more than th elimited knowledge of most American oncologists, who don't take a single course in nutrition in medical school.

 I've been consulting with Winters for two years and diagnosed two and a half years ago am feeling fabulous; she says my blood work looks great; she orders far more blood tests than your oncologists do because she knows that "markers" to look for in determining how your cancer is doing.

 

Best,

Rosey R

 

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I am from Colorado. I lived in Foutain Colo and graduated from Ftn-Ft Carson High School.  Dad was Army and I was also years later and both stationed at Ft. Carson.  I have heard of this remarkable lady in Durango thru other people needing her services.  Thanks for giving the information and I am going to contact her. Also the other person you suggested. Marti

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

I Believe, so sorry to hear about your Mom. Kelly and I are both strong believers too and we know that one way or the other God is going to heal Kelly and your Mom. The question is will it be this side of heaven? I pray for the peace that passes all understanding for you and your Mom. I know that nothing comes to us that does not pass thru His hands first.

Bless you,

Nicki

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I am sorry.  I did reply at teamkelly instead of you.  However what I said could be used for both of you in reply.  I am so happy to see some positive comments on MMMT for a change.  There is a lot of doom and gloom but MMMT is also that.  Tale care everyone on this site.  Marti

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

They were not going to do anything for Kelly, until I found out about CyberKnife and then her husband aggressively pursued it. She had brain surgery and then was treated with CyberKnife. I know this may not be right for your Mom, but we post for all those who may read this.  

Kelly has had 2 scans since CyberKnife and all is clear. Your Mom was diagnosed one month after Kelly with recurrence 3 months before her, she was diagnosed in Aug 2012, surgery in Sept 2012' followed by carbo taxol, METS in brain, abdomen and chest cavity Jan 2013, surgery to remove brain tumors and then CyberKnife, surgery to remove tumor in abdomen and then 25 radiation treatments. 

They will not do anything more for her, except CyberKnife if cancer returns in brain, they scan her brain every 60 days. She is doing well and has started on a regimen of 1 gram of marijuna oil a day. This has allowed her to get off pain meds, sleeping pills and to eat and gain back some weight, it also has taken care of anxiety and depression for her. She plans to stay on this for 6 months. She is continuing excercise and some travel.

 

Nicki

lillefty's picture
lillefty
Posts: 22
Joined: May 2013

I don't know the particular naturopaths she recommends (I am sure they are fantastic) but I know that the naturopath who my mom sees has been great. Based on the naturopath's guidance and the research I did for my mom, it seems pretty clear to me that traditional treatment (surgery, chemo, radiation) does not address the underlying deficiencies (nutritional and otherwise) that made the person's immune system unable to fight off cancer in the first place (in fact chemo and radiation can make those deficiencies worse).

I highly encourage anyone fighting cancer or trying to prevent a recurrence to consider seeing a naturopath for complementary treatment including diet and supplements. My mom is only a couple months into her NED status (which hopefully will last a long time) but I believe with her continued adherence to the dietary changes suggested by the naturopath and the supplement regimen the naturopath prescribed, she will stay healthy. My mom was diagnosed with stage IV clear cell adenocarcinoma in April 2013 and told she had NED in November 2013. Her doctor and treatment team were absolutely shocked by her very fast positive response to chemo (lymph system no longer swollen and CA-125 in normal range after 2nd chemo treatment). I wasn't shocked (over the moon pleased but not surprised) and attribute her positive response to the steps she took to make her body and immune system stronger through diet and supplements both before and during treatment. There are of course no guarantees that it will help everyone but it is a possible tool in the arsenal and one you might want to consider. 

Sending Kelly (and everyone else who needs it) positive healing energy. 

Lisa 

Teamkelly's picture
Teamkelly
Posts: 54
Joined: Sep 2012

Connie, Ro, Rosie thank you for your kind words and encouragement. Kelly is doing great, she is back to walking 3 miles a day 11/2 at a time. Tomorrow she has surgery to remove lymph node in her abdomen and then as soon as possible will start chemo.  She has an MRI on the 24th to see if the cyber knife treatment worked.

Will keep you posted, thank you again for all of your support

RoseyR
Posts: 464
Joined: Feb 2011

The problem with chemo/radiation (although I had both) is that they don't address the CAUSES of cancer.  It's the CAUSES we need to try to isolate to prevent or at least delay recurrence.  That is why treatment before starting chemo--and throughout treatment--with a good naturopath or at least integrative doctor (M.D. with additional training in complementary medicine) is needed.  Search for them in your own locale.  To find one more quickly, you might look at the index of Suzanne Somers' book KNOCKOUT (about alternative approaches to cancer treatment), for she lists, state by state, alternative practitioners.

 

marti968's picture
marti968
Posts: 31
Joined: Apr 2013

I am in remission but not cancer free. I have MMMT and you are answering many questions I needed answered.  They think the MMMT will go to my brain or lungs next.  I have Emphysemia.  At the moment I have to see a specialist about my kindney and on route to possible kidney failure.  I had a CT/PET Scan yeserday and the "mass" was unchanged but the kidney was HUGE. I was diagnoised 03 13 and only had CyberKnife with Bracytherpy (Spelling not right) after.  I have had no signs of cancer cells in my body but my doctor says they are there just still too small for the Scans to see hence remission. I am still here by the Grace of Gos also.  His plan for me is not over.  I am 74 with no family and live alone but I am actually doing well.  I bet you heard the remark of you look so good it is hard to believe you have that MMMT.  (Friends)  Best of luck to your mother and I am right behind her.  My husband had the same kidney problems and they put tubes in his kidneys and I had to drain them with a syringe at home.  I am a retired RN.  Another RN will have to do that for me if they go that route.  I am not looking forward to any of this but it is the course of action.  Good luck and take care.  My prayers will include all of you and your mom.  Marti 

BarbaraDe
Posts: 18
Joined: Oct 2013

I feel so stupid becaise I have had cancer since January 2012...with a reoccurrance of the uterine cancer in my lungs this past summer.  Some of what you guys are talking about sounds so foriegn to me!  What is MMMT or UPSC??  After my first occurrance of cancer, my friend flew me out to a naturpath in Seattle.  I felt so much better after I had several different types of treatrments with her, but I never followed through when I got back to New Jersey.  Does anyone know of a naturepath in NJ?

Thanks!

My thoughts and prayers are with all of you on this discussion board!  

GG1955
Posts: 4
Joined: Jul 2014

I was diagnosed with carcino sarcoma of the uterus in Jan 2014, I had to have radiation because I was bleeding badly and it wouldnt stop. I then had a total hysterectomy.  Today I recv a phone call from the doctors offfice that they found abnormal cells in lungs and stomach.  I am going to beat this.  I pray and thank God for all that he has in store for me.  I am positive about the outcome.  God is not through with me yet.  I am glad that Kelly is doing great.  It gives me and other hope.  I am stage 3c

 

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