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Still NED at this time.

txtrisha55's picture
Posts: 690
Joined: Apr 2011

Just got the results from 2nd CT Scan on 22 Nov and latest CA125. My CT Scan was NED and CA125 was 12.3. This is after 8 Apr 11 complete hysterectomy surgery, 6 rounds of carbo/taxol chemo from 6 May – 22 Aug. No radiation. Stage 3C1 Carcinosarcoma (MMMT) Tumor in uterus and 2 microscopic cells in 1 lymph node. I talked to both my GynOnc Drs and both told me to stop reading the Internet to get my information including eating tips. I mentioned that everyone on the ACS Uterine Cancer Discussion Board was concerned with their diets with sugar, meat, and turning to the Anti Cancer foods and drinks. I asked did I need to meet with the Onc nutritionist to discuss all this and change my lifestyle so completely. They said I could go that route but that would not guarantee that the cancer would not come back and that if I wanted to spend the rest of my life eating just vegetables and fruits then go for it. Yes that would be a healthier way to go but would it make me miserable? They both said that I did not go through the surgery and the chemo just to be unhappy but to live my life. There are no guarantees so live your life.
I use to smoke and quit 21 years ago. I use to drink, now only do it once in a blue moon. I use to be married but divorced in 85 so I do not have sex anymore nor do I date. I do exercise but not consistently but trying to do better. I have started eating better and have lost about 30 lbs since this journey began. I am 55 and still working for at least 3 to 4 more years then I can retire from my company with full benefits after working here 25 years. Will I be here to retire in 4 more years, God is the only one that can answer that. No guarantees and no stamped expiration date. Will become vegan guarantee that, No. Will eating no sugar guarantee that, No. Lots of things could happen.
While a healthier vegan diet would be nice, I cannot see myself giving up everything for it. More power to those who choose that lifestyle, I wish you all the best. I am choosing to eat better including new vegetables and fruits but will have my chicken and fish with an occasional steak thrown in.
For me bottom line is I am still NED for now and go back in 3 months for another CA125 test then another CT scan in June. They like to do a CT scan at least every 6 months, since there are no symptoms they can give me to look for. The Drs did say that the CA125 test is not a good marker for Uterine cancer but it was the best they had at this time.
I will continue to pray for all the people on the ACS site especially for all the Uterine cancer women. Good Luck for all the women that have been diagnosed with Uterine Cancer. trish

Posts: 66
Joined: Dec 2010

Dear Trish
I was interested in your post, because I had a similar diagnosis and treatment (I was stage Ia MMMT, surgery plus lymph node dissection November 2010 then six rounds carbo/taxol Jan-April 2011 as adjuvant therapy). I'm NED since, after two checkups - next one January. I don't have routine CT though (last one was April) and my doctors are not that interested in Ca125 (have had several tests, all 'normal range' - 12-15). I now see an integrative medicine doctor who has prescribed Iscador (mistletoe) therapy and two homeopathic remedies, plus referrals to Reiki healing (which I had during chemo) and autogenic training. But I never had any 'official' advice on nutrition - I did my own research (especially on this site). I have been vegetarian (but eating fish) for over 30 years, gave up smoking about the same time (but still have the occasional cigarette). I do drink alcohol quite regularly. I do various things like vitamin D, turmeric, juicing, berries etc to help ward off recurrence and don't find them at all onerous - but I wouldn't call this a very strict diet. As you say, whatever you do, the cancer could still recur. I suppose I like to feel I might have a bit of control over it by doing dietary things - also, I feel pretty good considering recent experiences! The main problem for me has always been the mental struggle with cancer....it is getting better though.
Take care
Susan x

Posts: 471
Joined: Feb 2011


I too was prescribed Iscuador by my integrative doctor after hysterectomy for stage IB MMMT uterine cancer. When I wasn't sure I wanted to take it (not THAT squeamish about needles, by the way), he said, "IF you're not going to take Iscuador, I'd recommend AHCC, a proprietary blend of mushrooms often given to cancer patients in Japan. Have been on it now for six months.

Could you describe your experience with Iscuador? Is it just one shot a day? Have you had any side effects? And do you remember any PARTICULARS your doctors gave about why he/she was recommending it?

And what were the homeopathic rememedies, might I ask>

Thanks so much,

Posts: 66
Joined: Dec 2010

Hi Rosey
I was given the choice to inject or take drops of Iscador and I take it by mouth (8 drops in the morning, 12 in the evening, Monday to Friday). I saw my integrative doctor on Monday and I did ask would the injection be better and she said no evidence of any difference - it is normally taken by injection in Germany but in the UK orally (she says it is absorbed through the mucous membranes in the mouth). On my notes, it says I am taking it for immune support and quality of life....
As for the homeopathy, I am on Calcerea Carbonica twice a week and Kali Arsenicosum as required - I take it most days. I am not sure why - cos the hospital is within the London Homeopathic Hospital - but I was not expecting to be prescribed homeopathy (I went there wanting to sign up for some visualisation therapy, in fact, which I am still waiting for). My only previous experience of it was taking arnica pills for post-surgery (recommended by so many people). Funny really - my background is in chemistry and I've always been so sceptical about homeopathy because it can't possibly work in a scientific way - but I do also like to keep an open mind and combining conventional and complementary treatments makes a lot of sense to me.
No side effects from the Iscador or homeopathy. I am being monitored quite closely. I had a few weeks of anxiety/hypochondria/odd twinges back in October and all that totally cleared up within a week of starting the remedies - whether that was just passage of time (during chemo I was focusing on getting through that, then for a couple of months after that I was just pleased it was over - then I suppose it caught up with me), or talking at length with the integrative doctor...or whether the remedies...I really do not know. Just so pleased all this is available on the NHS.
Your mushroom blend sounds interesting! How long have you been on that, and what effects have you noticed?
Great we can share information on this forum in this way. One more thing - my GP is monitoring my vitamin D levels and encouraging me to take a supplement, which I've been on since chemo. Will check to see if levels have risen in a month or so. It was 57 back in May and I think it should be around 80.

Take care

Gracegoi's picture
Posts: 59
Joined: Aug 2011

Hey Trish,

Your in a very good place IMHO. It sounds like you have made choices that have improved your life and how you feel about yourself. I am the same age as you. I have worked 25 years in my own buisness but have no retirement. I'm not married and gave up having a SO /dating 15 years ago ,I got tired of abusive relationships I said no more of that.

I hope you make it to get your much deserved retirement or an earlie one .

About the guilt and eating. I'm never doing all the right things . If I read the alternative news papers I find I'm not living my life "green" enough .I dislike the Greeness revolution and how people are capitalizing on it buisness wise . This has more to do with my recyling consisting of bicycling for over 15 years of my life from age 16 on instead of driving a car. This is the first and only place I have admitted this .When I see and hear the words " going green" I roll my eyes and smile inwardly.

Whats next.. Im going green AND lean AND Mean. LOL.

Most Americans are going lean in the green backs and are feeling a bit mean about it these days.

Congrates on comming to terms with " to thine own self be true" I believe when we find this nothing can shake our choices.


Gracegoi's picture
Posts: 59
Joined: Aug 2011

Thanks for sharing ,

I believe the herbal or dietary things I chose to partake of provide an action towards inactivating the terroist cancer cells beyond what traditional medicine offers. I have no idea if it will work . I feel better so It's right for me. I have always doing a few things differently.


Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Great for you. In my casemCam125 just lulled docs and me while a tumor grew. Had CT five month previous to findind new recurrent tumor. Pay attention to your aches and pains, mine was constipation when tumor was putting pressure on my colon. Good luck and enjoy NED, may it last forever!

daisy366's picture
Posts: 1493
Joined: Mar 2009

I really like what you are saying. We all need to enjoy the life we have left and it's progress not perfection!!!

What good is living longer if we are miserable and resentful in the process.

May you Live long (and happy) and prosper.. Mary Ann

LizGrrr's picture
Posts: 124
Joined: Nov 2011

You sound super and the news from the doctor is great :) Continue on your road and know that you are blazing a path of light for others to follow!

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