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Anyone with MMMT try Cancer Centers of America?

tblakemore
Posts: 5
Joined: Sep 2012

I was diagnosed with MMMT 1A in June of 2011 at 45 years old - complete hystorectomy followed by chemo and radiation. I only did 2 rounds of chemo because of extreme negative side effects - lots of blood transfusions etc. I was then NED until 7/2012 when I had extreme back pain and could not walk. Found I had a tumor the size of my hand in my lower back that was invading the spine. Had radiation & heavy doses of steroids which gave great relief by shrinking the tumor and reducing inflamation. I can now walk with a cane. They had also found 2 small tumors in my lungs which disappeared after 2 or 3 treatments of radiation. 4 weeks after the radiation we had a follow up scan - and found that I had a new tumor in my lungs. My oncologist had warned me that once it reaches my lungs - its game over - we lose the battle. I took a much needed vacation for a week - when I returned for radiation on that lung tumor the day I returned - they found it had grown and was too close between a rib and my heart to treat with radiation and now the cancer seems to be peppered throughout my lungs.
I am trying to buy some time to make it to my daughters wedding in Decemember which seems unlikely. So I will try chemo again - the first oncologist suggested MAID but he recently had two patients at his hopspital die from the treatment itself. I am trying to decide if I should stick with the traditional oncologist for this one last shot or try Cancer Centers of America. Time seems to be running out at the rate the cancer is reoccuring. Any input would be appreciated.

txtrisha55's picture
txtrisha55
Posts: 424
Joined: Apr 2011

I have not gone there but I have seen the commercials. It seems to be an OK place to go and indicates that it takes serious cancers. Will be praying for you. trish

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

It seems so cold for a doc to say 'game over'. Miracles happen every day. Do whatever you can do to meet your goal of attending the wedding. You owe it to yourself - you are your best advocate.

Hugs,
Liz in Dallas

tblakemore
Posts: 5
Joined: Sep 2012

Thanks - I cannot tell if he is just a 'realist' or not very hopeful. I tend toward the 'realist' myself so it is hard to feel like I have hope hearing him talk. He is a very experienced and respected oncologist at Northwestern Memorial in Chicago, so it is hard not to believe him when he says I dont have long. But it would be nice to hear a different opinion so I will try Cancer Centers of America and see what they say.

marieinlv
Posts: 40
Joined: Aug 2011

I'm so sad for you to be in this situation. I would seek all the opinions I could. I did go to a couple others to confirm what my Dr was doing. Peace of mind is important, none of us know it all, so not all Dr's know it all. That isn't meant to be rude, just the truth. I hope there is something to be found for you soon. I'm Praying with you. Marie

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

If you want to go there, I say go there. Not much to lose.

Sending Prayers and hugs for you.

Mary Ann

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I have a good friend who's part of the executive team in Arizona and swears by the place (very good to the employees in many ways). Only down size I've learned, if you don't have the proper insurance, they will refuse to take you.

To me it sounds sorta like a hospital "resort" with masseuses, therapists, saunas...and in the end if the care is tops that's all one can ask.

As Mary Ann mentioned, only you can go and find out...then tell us what you think.

Jan

Double Whammy's picture
Double Whammy
Posts: 2293
Joined: Jun 2010

If you're not happy with Cancer Centers of America or don't have access, I'd just like to suggest any NCI designated Comprehensive Cancer Center. The NCI centers are usually academic medical centers where all the big-brained folks hang out and they have access to cutting edge clinical trials and/or at least knowledge of the latest outcomes data. You can Google them and get a list of centers in your area.

I do know that patients are treated very well at the Cancer Centers of America and that is an important part of anyone's care.

Most important thing - a gynecologic oncologist.

So sorry you're having to deal with this and I pray you will attend your daughter's wedding and many more important events. Good luck.

Suzanne

RoseyR
Posts: 464
Joined: Feb 2011

If I were in your dilemma (and I so sympathize!) and had insurance that CTCA accepts, I would go there: you will be getting truy integtrative treatment: not just chemo or radiation but a host of supplements to bolster your body's biochemistry and try to provoke a remission.

Do not give up hope: even at your "advanced" stage of lung tumors, near miracles do happen.

I would also be taking curcumin and fish oil ASAP to minimize spread of your tumors. (CTCA I am sure will prescribe them for you.) Finest Pure fish Oil by Pharmax has no fishy flavor. Unless your blood platelets are very low, you can take 3 tsps a day after meals. I would order curcumin from either PURE or from Life Exension and start taking 1,000 mgs after every meal; up to 8,000 mgs a day have been used at M.D. Anderson with no harmful side effects. You might Google to do your own research on these vital supplements, by the way.

Please stay in touch with us and let us know how you are doing.

Hugs,
Rosey

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