Small Cell Ovarian Cancer Treatment Options??

[laneg840]

I am 29, and was just diagnosed with stage 1 small cell ovarian cancer.  I have already had a hysterectomy and am now trying to make a decision regarding treatment.  My family along with any medical professional I have talked to say that I NEED to do chemo, that is my only chance.  My boyfriend and acupuncturist is advising me to seek alternative treatments, Oasis of Hope in CA or the ****** Therapy.  Does anyone have any input into what worked for them to survive past the 5 year survival mark?  My oncologist is recommending Cisplastin, Etopiside with an oral topotecan.  Upon research into this treatment show poor survival rates, though the research was done on small cell lung cancer patients.  I need to make a decision soon and any advice or anything would greatly help!

[HVAC]

Lane

I am so glad you are giving it a go. I sat there in the room and told the doctors and my husband I did not want to do chemo. I thought what is the point? I am a goner according to all I had read. That was in June 2013. I am celebrating my second Xmas. My CA 125 is 14. I did not even want to do this Clinical Trial. I am 21 weeks in and its working. I am not a Mary Sunshine type but Statistics do not tell the whole story. Have a good holiday. You made my day.

Alex

[laneg840]

Just wanted to give an update.  I am currently going through chemo, in my second round.  It's not too bad, I got a cold and it lasted a couple weeks which is annoying.  Not much to say at the moment but I am still looking for people who have thrived with small cell hypercalcemic ovarian cancer, it's very uplifting for me to hear these stories since these cases are so rare and the statistics are very depressing.  I will try to keep posting on this forum with updates.  Thanks for all of the people who have sent me messages!  Lane

[HVAC]

Ovarian Cancer has come a long way in just the past few years. The statistics and they are just that are not what you should go by. The statistics are no longer accurate in most cases. Besides I have learned people are not statistics. I have stage 4 clear cell ovarian cancer and am doing very well. The fact they have caught it at stage 1 is great. Clear cell is supposed to be one of the more deadly forms of cancer. When they told me I was so advanced and had clear cell I did not want to do chemotherapy at all. My friends and family begged me to.

I did the six Carboplatin and Taxotere last year after a fully hysterctomy, fallopian tubes, ovaries, omentum, and bowel resection. The Platinum Chemo was not fun but I got through it. In retrospect I am glad I did it. I was in bad shape when I started. I was anemic, 40 pounds under weight, and failure to thrive going into chemotherapy.

I am all for alternative medicine as a compliment but not a replacement for chemotherapy.

I am now in a research study for Amgen 386 and the chemo drug Doxil. My Cancer has shrunk in half. With Doxil I have not lost my hair. The only thing I have are blisters occasionally and a sore throat every once in awhile.

Ovarian Cancer is now considered a Chronic Illness. When Amgen 386 comes on the market in the next year or so it will change the treatment. It is not a chemo drug. It goes directly to the Cancer Cells and kills them. They are testing it on all kinds of Cancer. I know many women with Stage 4 Ovarian Cancer who have passed the five year life expectancy and have a decent quality of life.

My advice would be to do the chemo. Do one step at a time. It seems scary and overwhelming but it is doable.

What is my life like now. I train dogs, and I ride horses. I am writing a book. My husband and I are closer than ever. I have lots of friends and have a good life.

I am less than two years from diagnosis but I am sure I will be around a long time. No I do not like having Cancer but compared to a lot of people I have a good life.

I also have a rare form of Multiple Sclerosis which can paralize me and I am BRCA 1 positive with an 87% chance of breast cancer. If I get breast cancer the chances are it will be triple negative a harder to treat form of breast cancer. I was supposed to have a double mastectomy. I did not because I think they are coming up with new treatments for Cancer all the time. I think by the time I get breast cancer if I ever do radical mastectomies will no longer be necessary. Plus I am in chemo so it will knock down any breast cancer.

If I looked at just statistics I would want to quit. The statistics have me losing the use of my arms and legs from the Primary Progressive MS. They have me dead from Ovarian in 2 years from diagnosis with the clear cell. They have me having a bad form of breast cancer. It is not a pretty picture. These are just statistics. I am not just statistics.

None of us knows how life is going to go. For me I am going to treat the Ovarian, watch for the breast cancer, and live with the MS.

I did not want to treat the Ovarian but I am glad I did. I had Ovarian symptoms for six years. I kept telling my doctors there was something wrong. My bowels got blocked and I threw up for two years. I had to carry a bucket with me and I could only eat avocadoes at the end. I had diaphragm spasms all the time from the cancer in my diaphragm. They would last for hours and were painful. The chemo has shrunk the cancer on my diaphragm and I no longer have spasms. The blocked bowels are what happen if the Cancer goes untreated.I would not wish that on anyone since i have lived it.

I only wish they had caught my cancer at stage 1 and stead of stage 4.

Do the first round of chemo. You have your life ahead of you. I was scared out of my mind. It is scary. Don't give up to soon. Do both eastern and western medicine. I do both. I do Reiki, massage, diet,  meditation (Thicht Nhat Hahn), hypnosis, acupuncture, and yoga.

I am glad I took it one chemo at a time and got through the six chemos. I then had 8 months of no treatment. Then I started the study. I always swore I would never do chemo but I would not be alive with out it. I have too many things to do in my life.

Alex