It just keeps coming back

jan9wils

This is my first post. I am not exactly new here as I have "crept" around reading different threads I thought were relatable. I don't feel especially knowlegeable. For instance, it took me a bit to figure out NED is no evidence of disease, which doesn't seem to mean disease-free, but maybe remission?

I was first diagnosed in May 2014 after experiencing some bleeding a few years after menopause. I had a complete hysterectomy which was done robotically. Pre-surgical screenings showed a very small lesion in my lung. My oncologist had a pulminary Dr. look at my scas and examine me while I was in hospital for my surgery. He thought it was likely a scar or something, but recommended I follow up with him again in six months. My path reports came back rather encouraging, I thought. Stage 1 Grade B. Since there was evidence of vascular invasion (I think that is how it was worded) it was recommended I have radiation. I completed 26 external beam radiation treatments and two brachys. I was able to continue working throughout, although i did practically live on lomotil and lost about 15 pounds. Not big to begin with, I was about 110 pounds when I completed treatments.

Over the next year I followed up with my Onc every three months with CT scans, blood work and exams. I saw the pulimnary specialist at 6 months. My appetite returned and I gained 10 pounds. The second year I still came every three months for exams and labs but had CT scans every six months. It was during that second year that I noticed a lump in my abdomen. A PET scan and biopsy confirmed that my cancer was back. I had surgery to remove the two tumors and opted out of chemo at that time.

Six months later there were two more tumors and the small spot in my lung was a possible a mm or two bigger. I had cis/tax for 6 treatments total. I fell and broke my foot when I passed out one night after treatment. It was a difficult time but I made it through and at the end my CT scan showed no evidence of disease. I was prescribed an estrogen blocker but after trying 3 different ones I had to discontinue them as they made me feel severely depressed. 

But not quite a year later the spot in my lung grew. My oncologist felt rather strongly that although the spot was still quite small it needed to be biopsied and probably removed. Turns out it was the same old endometrial adnocarcenoma! It was removed and I had 6 treatments of carboplatin and the delightful drug nicknamed the red devil! I had a harder time with chemo this go round but low and behold, at the end my CT showed no evidence of disease. Once again I tried the estrogen blocker but had depression again so I stopped taking it.

During the second time i had chemo my onc wanted me to go to MD Anderson for a second opinion from a colleague. So I did. They were very thorough. The onc. at MDA told me to continue with my current treatment. She also said that for me, it wasn't if my cancer comes back, but rather, when my cancer comes back, she thought I could have chemo again with cis/tax as enough time would have elapsed since the first time I had it.

So here I am just under a year later after completing the second cycle of chemo and I have tumors that I can feel in my abdomen. After examination, my onc. said I needed a CT scan and a biopsy. These tumors hurt. Not all of the time but this is the first time I've had pain in my abdomen and back. Three months ago I had a CT scan that showed no evidence of disease. And although I shouldn't be surprised that I have relapsed again, it just seems so much faster this time. And I don't feel so hopeful this time either.

 

 

NoTimeForCancer

jan, I'm sorry, I thought I

jan, I'm sorry, I thought I posted but I don't see it.  It is completely understandable to feel that way, but please do come back and let us know how you are doing.  Thank you for letting  us meet you.

MAbound

Hard to hear this

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!

barnyardgal

I'm so sorry you're facing

I'm so sorry you're facing this once again. I know there are a number of ladies on here who have experienced the same thing. This cancer beast is awful.

janaes

Im so sorry you have to deal

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

MAbound said:

Hard to hear this

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!

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.

MAbound

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.

Megace

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.

Lulu7582

janaes said:

Im so sorry you have to deal

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.

Hello

Hi Jan,

Gosh you are one tough cookie too!! Once you get the genomic testing then they will have a better idea which drugs / immunotherapy may work for you. Have you considered a clinical trial? So many great new drugs being tested right now. I just started a trial with an immunotherapy drug and chemo. My genetic testing all came back negative and the genomics showed I didn't have microsatellite instablility but I did have other mutations that would respond to immunotherapy. Please don't give up hope. Continue to ask questions of your oncologists and ask about all your options. xo

PS the clinical trial I am on is also at MDA. One of my other threads has the link. Sorry nausea is taking over otherwise I would post it here.......hopping off the computer ..

jan9wils

MAbound said:

Hard to hear this

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!

MAbound I want to thank you

MAbound I want to thank you for your insight regarding immunotherapy. I am scheduled for a biopsy Monday and if the sample is large enough I will have genomic testing. This will maybe open up more treatment optons for me to consider. I feel so much better and like thinking about "living with a chronic disease." Indeed, my goose is not yet cooked! 

jan9wils

Lulu7582 said:

Hello

Hi Jan,

Gosh you are one tough cookie too!! Once you get the genomic testing then they will have a better idea which drugs / immunotherapy may work for you. Have you considered a clinical trial? So many great new drugs being tested right now. I just started a trial with an immunotherapy drug and chemo. My genetic testing all came back negative and the genomics showed I didn't have microsatellite instablility but I did have other mutations that would respond to immunotherapy. Please don't give up hope. Continue to ask questions of your oncologists and ask about all your options. xo

PS the clinical trial I am on is also at MDA. One of my other threads has the link. Sorry nausea is taking over otherwise I would post it here.......hopping off the computer ..

Lulu7582, thank you for your

Lulu7582, thank you for your thoughts. I am hoping immunotherapy will be an option for me. Hope you are feeling less nauseous. I look forward to learning how you respond to the trial.

Northwoodsgirl

More treatment required

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 

Armywife

Jan

What a warrior you are!  Isn't it amazing that you could be scanned just 3 months ago and have "feel-able" tumors so quickly.  You have battled this thing awesomely and successfully before, and I pray your feelings of hope and resolve will return as you catch your balance back.  Please keep us posted.  This is a wonderful group and these ladies know their stuff.  Lean on us.