MMMT Recurrence

jazzy1 said:

Your dear mom

Sorry to read about the recurrence and especially with our aggressive MMMT type.  I've got the same type, stage 3 and thusfar been quite lucky, but don't get ahead of myself too fast as that devil can poke it's deadly head at any time.  

Having been a cancer survivor yourself -- CONGRATS ARE IN ORDER -- you do bring a whole differnt light to the subject at hand.  No one truly understands this path we endure, until one has walked in our shoes...I truly believe this one!!!  There comes a time when a person is simply tired of fighting for their life, just wants to enjoy what time is left.  If this were my mom, I'd give it my best shot to see what options are availabe to decrease the tumor size, with hopes your mom continues to stay strong to fight.  If at any time mom couldn't continue I'd have to abide by her wishes to stop all treatments.  More about "quality" of life.  

No one knows the turn cancer will take with each of us, as to why we try to enjoy each and every day.  You sound like a wonderful and supportive daughter who's doing everything in YOUR power to help guide you mom.  Is she now showing any signs of giving up?  A good part of enduring the treatments is the patients positive attitude to continue the fight.  When this thinking goes away, it's truly a much tougher journey.  As we all say, MIND OVER MATTER!!!

I wish you and your dear mother the best and know we're here for you....keep us posted!!

Hugs,

Jan 

 

 

No treatment is not giving up
Thanks Jan. Her indomitable spirit is what got her thru the first go round with MMMT. But the chemotherapy weakened her so much that although she was "better", she was a shadow of herself. She always took care of herself, exercised, ate healthily, followed doctors' orders, etc., so seeing her struggle to walk because of neuropathy is heartbreaking. Because of the initial dx and the prognosis for recurrence within less than two years, after the final chemotherapy round and the transfusion, she'd said if it came back, no chemotherapy.
A part of me was glad when she decided to do 3 rounds, but in her weakened and near anemic state, with A-fib to boot, another part of me wanted to take time away from work and complete her bucket list, especially when she says, "I'm doing this only because I don't want to leave you all' not for me...my life has been great". I told her that no treatment doesn't mean giving up...it means facing your particular reality in your own way. It makes me feel selfish for putting her through this. Some of my siblings and other relatives don't fully understand and aren't as supportive of her decision to stop after 3 if there is no improvement. CTCA was thrown out as an option repeatedly and I knew that it was not an option for her based on what I had found, but they kept pushing and we made the call and found that they don't accept her insurance. Clinical trials have come up too and she's getting drugs that are currently being used in trials. Based on my research, the drugs in the other current MMMT trials would be too harsh for her.
The silver lining in all this is that the down days are few and far between. She stays upbeat and positive for the most part, and that's more than we can ask for.
Your NED state gives me hope though because the literature on MMMT is dismal. I pray you keep beating those odds!
Take care..TC

RoseyR said:

Your Mother

 

Dear Ettie,

As an MMMT survivor (was diagnosed nearly three years ago and finished treatment--six rounds of chemo and a lot of pelvic radiation--two years ago, I am very lucky to be feeling great and have high quality of life since diagnosis.  (Since I saw an integrative doctor during chemo and radiaiton, I wasn't sick at all from the treatment; he prescribed supplements that protected me from nausea and neuropathy.)  

Because this tumor is so aggressive, I also did a lot of research and flew out to Durango, Coloado last summer to see a naturopath named Dr. Nasha Winters--herself a longterm survivor of stage 3 ovarian cancer, diagnosed when she was in medical school--who believes that what helps one survive is not chemo and radiation, but making one's body chemistry as inhospitable as possible to the survival and growth of cancer.

Several of her patients with aggressive uterine and ovarian cancers are NED three to four years after conventional treatment and feeling better all the time.  Nasha has helped me to get my hemoglobin and white blood counts up again after transfusions necesitated by chemo.

Because Nasha is so sought after, she now hosts weekend retreats for newly diagnosed patients (or their family members) and is having one in NOrth Carolina this October.

I suggest you go to her web site, Namastehealthcenter.com  and phone them if you are interested in a consultation (or retreat) for your mother.  

In the meantime, I hope your mother is taking curcumin, at least (500 mgs three times a day with meals), avoiding sugar and too much fruit, and generally following the dietary advice found in the book Anti-Cancer.  There is also a lot of valuable information on the web site I just referred you to.

Best,

Rosey R

 

 

 

 

 

Thanks for the Naturopath's info
Hi Rosey,

Thanks so much for the encouragement and for the info on the naturopath. She's not well enough to travel, but i may be able to go if she stabilizes after the chemo is completed. I'll take a look at the website.

thanks again,
TC