It just keeps coming back

Getting through chemo once is hard enough, but facing a third time it's understandably hard to keep a positive attitude.

Did anyone ever talk to you about other options besides chemo? Since you have the hormone driven version of uterine cancer I would think Megace or some other type of hormone therapy would be an option. It can be given with chemo and you wouldn't have the worries about weight gain with it that some of us have had to deal with while taking it. There are other hormone therapy options besides that, too. Megace is kind of considered an old school treatment these days, but it can still be quite effective for treating or preventing a recurrence.

Did you ever have testing (genetic and/or genomic) to see if you would be eligible for immunotherapy? That would be worth looking into also, especially if you seem to be resistant to some of the chemo drugs that you've already had.

In recent years there have been such strides made for treating this disease that I wouldn't give up hope just yet. While a cure may not be an option, living with it as a chronic disease as if it were something like diabetes is possible. It's finding what works that can sometimes be hit or miss. It's important that you keep learning about your options and pushing your doctor's to consider them. Knowledge is power, so you have to be proactive looking out for yourself. Your goose is not cooked yet!

Im so sorry you have to deal with this cancer so many times. Your one tough cookie. I havent had reacuances to my uterine cancer. But i have had 3 different cancers. My skin cancer was a piece of cake but the other two i had all the chemo junk. Its hard but it sounds like you are doiing what you need to do. Keep up the good work. I like what MAbound said about looking into other options.

jan9wils said:

Thank you MAbound and to

Thank you MAbound and to everyone for your thoughts and supportive comments. I have not had genetic testing per se, just screened for LYNCH (I do not have that). So that is something for me to ask about. I've read some about immunotherapy but don't know of anyone who has had it. I'll look into that. I do know women who have taken Megace. I was not prescribed that but I did try three others that are similiar I believe? I have tried Temoxifen, Letrozole and Anastrozole. I couldn't take them because I became severely depressed. I'll ask about trying Megace. I know two women who have had tumors shrink with Megace and had some hair loss but no other symptoms. 

Last night I went to a wedding for the daughter of a very good friend of mine. It was great to eat, dance and have a good time. A reminder to myself that I'm here to enjoy and celebrate all the good things.

I was on it for about 18 months starting about a month after treatment. I'm a stage 3a, grade 3 adenoca. I felt pretty good the whole time I was on it. Depression is not a named side effect. I suspect I was probably estrogen dominant all of my life, so menopause and the megace felt like such a relief. I tended to be a bit tired during the day and slept really soundly at night while on it. I do miss the good nights of sleep I had. I did gain back the weight I lost during treatment even though I didn't want to. They say it increases your appetite, but I wasn't hungry between meals. It was more like when I ate, my brain would go "what else can I have?". I beleive I read somewhere that it promotes fat cell production and that's the bigger culprit for weight gain. It can also make your blood sugar and bp harder to keep consistant, but not where it can't be controlled. I had to change oncologists when I moved out of state and the new one took me off of the megace because he considered using it to prevent recurrence was "old school". (My original oncologist was 69). I haven't taken it for about 9 months now and so far so good. (But who knows, he's one who doesn't do CT scans or CA-125 levels, either).

Cheese Queen was started on it after she recurred and it seems to be working for her. 

It's possible that they can determine whether or not you'd be eligible for immunotherapy from the testing you had for Lynch Syndrome. If it showed that you have microsatellite instability, there's a real possibility you'd be eligible and having that would help argue for insurance coverage if further testing were needed. If not, you might need to be prepared to pay for it out of pocket. It can run into several thousand dollars, so I wanted to give you a heads up about that. Insurance should pay for genetic and genomic testing, but most are real stinkers about it at the moment.

I'm glad you are still living your life as you can between all of this; a positive attitude helps so much for getting through all of this.

Hi Jan, 

I just wanted to acknowledge what you are going through. I will keep you in my prayers. You really have gone through so much.  Glad you sought a second opinion. This cancer fight is unbelievably difficult....more than anyone who hasn’t gone through it would know. 

Lori