Has no one been dianosed with Clear Cell since 2008?

[sarahlee585]

It seems all of the questions and posts I have been reading are way back to 2007 or 2008.  I know this is rare but is it that rare or am I not on the right Forum for more recent diagnoses?  I have Stage 1 a Grade 3 Ovarian Clear Cell Carcinoma (OCCC).  Just got diagnosed in Nov 2015.  Being treated with chemo of Taxol/Carboplatin for 6 sessions.  I only did one round and I could hardly take the side effects I had - lasted 6 full days with minor side effects after for 2 weeks.  I don't know how some people get through the side effects of chemo.  They are really awful...do you get used to it at all or will it always be that bad for me?  I also had a total hysterectomy but staging looked good so they didn't look at lymph nodes - they sure didn't expect OCCC.  Now I have to do the chemo jsut to be sure....I'm wondering if one has any 'weak' points in their body if those spots are first hit with side effects of chemo?  I also have Fibromyalgia all over and the worst part of the sides effects was the intense pain and aches I felt for 6 days (had to take pain meds).  Also, I lost my voice as I have had vocal chord surgery in the past.  But my joints and muscles were hit the worst.  Anyone else?  

[HVAC]

It just depends. There are women on the Ovarian Cancer National Alliance some have lived past ten years. I would look them up. With the new immuno suppressant  therapy coming on board it could be a game changer. I can't have it because I have MS. I myself have survived 4 years which I never would have believed. I am shooting for five years or more. I am platinum resistant so the platinum drugs do not work for me. Neither did Gemzar or Lynparza. They told me everything as soon as I got out of surgery. They said I had an 80 chance the first line chemo would help. I survived them and lived for more therapy. I have never had a remission.Doxil turned out to be the best chemo I was on. I was on it for a year. It knocked everything back then it came back in my spleen. I only have it it in my spleen and lymph system. Blocked bowels is what usually kills women with ovarian. They can do alot more for blocked bowels than they used to. I was told by my doctor that 100% of her patients die of OC but no one knows when that will be. Many women are going ten years and more. Women of all stages. I hope I am not a downer. Go to the OCNA forum they have a clear cell section. Oh and at the bottom of a question they ask if you want your answer public say no. You will get more responses. I am Compressor over there. I will any questions here. Like I said many women with clear cell live ten or more years.

Alex

[sarahlee585]

Thank you so much for your reply...No one else has so maybe it's just us!  I'm so sorry that your liver stage is 3c.  I don't think the doc would actually tell me the actual prognosis without reservation...did you ask - did they tell?  Is it true that we have a death sentence regardless of what we do?  I didn't mean this to cause any distress but I feel I can ask you.  Is it true that once confirmed or do we have any hope for real?  I'm hoping for both of us...but what have they told you about clear cell if you don't mind sharing.    

[HVAC]

I have clear cell as well. I was diagnosed May 2012. I was stage 3c, really four they just did not catch the liver. I am the only one on here with ovarian cancer. I am glad to give you all the support I can. I also belong to the Ovarian Cancer National Alliance. They have a lot of women with clear cell. It is a little harder to navigate and I did not do as well with women dying which happen a bit on that site.

Every case of cancer is different. They are doing better with clear cell. Ask what percentage of you cancer was clear cell. If it were say 10% that is way different than say 90%.

The Tax/Carbo is not fun I will not lie. You have to just click off each on until you are done. I lost too much weight. I have since learned to eat whether I feel like it or not.

Chemo goes after the whole body so yes weaknesses will get hit harder by chemo.

I also have Multiple Sclerosis. Yes Tax/Carbo made me very ache. They get harder as they go. You have more chemo in your body.

The first six chemos were the worst for me. I am now on my sixth different chemo. My cancer was way more advanced than yours. I had it all over the place. Now it is just in my spleen and lymph system.

I never had a remission. You probably will have a remission and let us hope it is a long one.

If you can walk at all that helps a lot. I walk several times a week. Even just up the street and back. It helps with anemia.

Try to make it through the chemo. It will be the hardest thing you ever have done. I am here for you.

Alex