Dear jloe - I have a question for you please re: your discussion to me for help

antcat

Dear jloe....I appreciate what you wrote and I don't feel so alone...I guess I was feeling sorry for myself yesterday. I am going to see my gyn/onc next week and he is also my surgeon. I am going to ask him about possibly doing surgery to remove some of the tumors. I've had 3 surgeries so far. You wrote that you've had 9 surgeries, at least that gives me some hope, that maybe surgery will still be an option. Who administers your chemo treatments. Is it your gyn/onc or do you go to a cancer center. I went to a cancer center and to tell you the truth, I just felt like a medical record number and not a person and didn't feel I was getting the correct chemo or even able to talk to the medical oncologist. I am hoping to take a little break, I don't know how long they'll allow, but I would love to have a break until after the holidays. I'd like to take my nephew away to Disney World in November, but so far docs have been afraid to OK, because my counts have been kind of low.

P.S. With the Alimta, did you have to get B12 shots and be on Folic Acid? This is what they told me I would have to be on along with getting a Neulasta shot as the oncologist said it will affect blood counts alot. So, far I think I've been pretty lucky, even though my red blood is a little low and the white blood and platelets have been a little low, once I'm off chemo they go back up, with the exception of the red blood, which is still low.

Thanks again.

jloe

You are not alone!!
And never feel like you have to appologize for being scared to death. You're not feeling sorry for yourself. I think the longer we battle this with few breaks, we all have felt like we want to throw in that towel. I've been there many times myself but can't just give up. My gyn/onc is my surgeon and oversees the chemo treatments but not in his office. I used to go to a major hospital here in NY where his office was but he moved out of the hospital and he has me going to a Oncologists office where it's much better just for the same reasons you have your issues with. The oncologist who administers the chemo works with my gyn/onc and they all know each other. The larger the center/hospital the more drama that you don't need. The surgeries I've had include several big ones and 2 look arounds and all but 2 were laproscopic (sp?). The first was the big de-bulking, then several to remove tumors alway close to other organs but not in them. The last was bowel surgery and no stoma so I lucked out and did not have to have the second surgery. My gyn/onc is a very aggressive but will not just do surgery to remove tumors if they are not aggressive. I always freaked when he said we're not doing surgery because there is no danger and we're going to try another treatment plan. I just wanted this stuff out of me. It's really taken me a long time to understand this chronic concept but now I get it (sort of). I can tell you that that it sounds like your on the right path with getting the team who all work together . I was afraid to make a change because I did get to know aeveryone at the hospital but many of our chemo treatments are routine and can be administered by many chemotherapy doctors and in many locations. All involved with my treatments do know that my primary decision maker is my gyn/onc and they work as a team. As far as the Alimta, I do have to have the B12 shot and I take Folic acid everyday. I have no issues with either one of those. My red count is good because I've had my spleen removed and I'm not sure how that works. The white count too but I've had many neulasta shots with other chemo treatments but not this one. As far as long term ongoing treatments, I had a great conversation with a very good friend of mine one day who she herself is a lucky long term OVCA survivor. I was really depressed and just couldn't get over it. I didn't feel well and was at the "no light at the end of tunnel phase" She said to me, you know this can go on for long time. Did you ever think you might live? Boy did that wake me up and made me laugh! I joined the gym the next day. Ok so I havn't lost the weight I gained that blame on the steroids but it's a start...LOL. I hope this helps and I really hope you can take a break from the treatments. There are several on this board like Maria and Kathleen who are non-stop treatments and many surgeries so you're certaintly not alone. J. OXOXOXOX

ps
Sorry to ramble but I just wanted to cover as much as I could.

antcat

jloe said:

You are not alone!!
And never feel like you have to appologize for being scared to death. You're not feeling sorry for yourself. I think the longer we battle this with few breaks, we all have felt like we want to throw in that towel. I've been there many times myself but can't just give up. My gyn/onc is my surgeon and oversees the chemo treatments but not in his office. I used to go to a major hospital here in NY where his office was but he moved out of the hospital and he has me going to a Oncologists office where it's much better just for the same reasons you have your issues with. The oncologist who administers the chemo works with my gyn/onc and they all know each other. The larger the center/hospital the more drama that you don't need. The surgeries I've had include several big ones and 2 look arounds and all but 2 were laproscopic (sp?). The first was the big de-bulking, then several to remove tumors alway close to other organs but not in them. The last was bowel surgery and no stoma so I lucked out and did not have to have the second surgery. My gyn/onc is a very aggressive but will not just do surgery to remove tumors if they are not aggressive. I always freaked when he said we're not doing surgery because there is no danger and we're going to try another treatment plan. I just wanted this stuff out of me. It's really taken me a long time to understand this chronic concept but now I get it (sort of). I can tell you that that it sounds like your on the right path with getting the team who all work together . I was afraid to make a change because I did get to know aeveryone at the hospital but many of our chemo treatments are routine and can be administered by many chemotherapy doctors and in many locations. All involved with my treatments do know that my primary decision maker is my gyn/onc and they work as a team. As far as the Alimta, I do have to have the B12 shot and I take Folic acid everyday. I have no issues with either one of those. My red count is good because I've had my spleen removed and I'm not sure how that works. The white count too but I've had many neulasta shots with other chemo treatments but not this one. As far as long term ongoing treatments, I had a great conversation with a very good friend of mine one day who she herself is a lucky long term OVCA survivor. I was really depressed and just couldn't get over it. I didn't feel well and was at the "no light at the end of tunnel phase" She said to me, you know this can go on for long time. Did you ever think you might live? Boy did that wake me up and made me laugh! I joined the gym the next day. Ok so I havn't lost the weight I gained that blame on the steroids but it's a start...LOL. I hope this helps and I really hope you can take a break from the treatments. There are several on this board like Maria and Kathleen who are non-stop treatments and many surgeries so you're certaintly not alone. J. OXOXOXOX

ps
Sorry to ramble but I just wanted to cover as much as I could.

Thank you so much jloe
Thank you so much jloe, you are a very kind and compassionate person and you took time to answer me back with such detail, it is just amazing. I feel better after reading what you wrote and no deep down inside of me that I made the right decision to get out of this cancer center in New York. I consider myself lucky that my gyn/onc and primary care doc are so very active in my care and what you said really, really helps. I'll try to let you know how I make out with my care and thank you again.

P.S. Please don't think you rambled, it was so great what you wrote.

jloe

antcat said:

Thank you so much jloe
Thank you so much jloe, you are a very kind and compassionate person and you took time to answer me back with such detail, it is just amazing. I feel better after reading what you wrote and no deep down inside of me that I made the right decision to get out of this cancer center in New York. I consider myself lucky that my gyn/onc and primary care doc are so very active in my care and what you said really, really helps. I'll try to let you know how I make out with my care and thank you again.

P.S. Please don't think you rambled, it was so great what you wrote.

Good for you!!!!!
This is your fight and keep going. You just can't do it alone and so what if you reach out for help.