Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Well right now I'm waiting on appointments with Mayo Clinic to get started with double temozolomide for 5 days then off for 3 weeks and when I start that regimen I understand that if my body can tolerate it I will remain on that regimen. If my body can't tolerate it then I may be gone sooner than I'd like. Doc is also going to have me try the Optune device by the end of February 2019. It may give me a couple more years on planet earth. Hopefully I will know more about all this after my appointment on January 25th.

@bjh. I'll be curious to see how you are doing.

@karen- your radiation will be in a different place on your body. Don't forget, everyone is different and reacts differently. I hope that your chin is raised a bit more. We're all pulling for you

Wow. I'm amazed that the very topic of concern for myself is the first one that popped up! I was absolutely certain God had healed me of triple-negative breast cancer of overlapping sites after eight rounds of AC and Toxil followed by a double lumpectomy and removal of seven lymph nodes. At my one year check-up, another lump was found in my breast so I had a mastectomy. Now my Medical Oncologist is suggesting five more rounds of Taxene (almost same as Taxol). Taxol made my lupus and Sjögren's flare severely and caused horrific bone pain. I'm so depressed I can barely get out of bed. I postponed my port surgery and am having a horrible time agreeing to this horrid chemo. Second opinions suggested a different chemo agent but my Oncologist refuses anything but CT. Can anyone relate or have any suggestions? I hate, hate. Hate having more of this chemo! I went to a Psychiatric Hospital but they wouldn't admit me because I wasn't Suicidal (yet).

I had 4 rounds of AC followed by 16 round of Taxol a year ago. While on Herceptin I had a double mastectomy with immediate reconstruction. I am still on Pertuzumab and Trastuzumab. I found the Taxol and the AC to be the worst chemo to tolerate. I honestly regret having the AC and Taxol and wish I just had the mastectomies and target treatment. Too late now. I had my port inserted 48 hours prior to my first round of chemo. That surgery was more painful than the mastectomies. My intention is not to scare you but rather be up front and honest. I wish knew what I was in for and was in a position to make a better decision. My suggestion is take an extra day or two to think about this. You are right the chemo is horrible.

@sushilady1- Welcome to Mayo Clinic Connect. Thank you for sharing your history. I'm glad that you found us. I ha d a much different experience with having my port placed. I was awake an had a bit of a shot of valium and never felt anything. Mine was placed the day before my 2nd chemo. What was your horrible experience?

I was also awake when the port was inserted. The procedure went fine. I was in recovery for about an hour and then was sent home. About 6 hours later the freezing wore off very quickly and then I was in excruciating pain. I was not advised to wear an open button shirt and was in so much pain I was not able to change the T-shirt I was wearing until the morning of that first round of chemo. I could barely bend forward to brush my teeth. I mentioned this to the chemo nurse I she told me I should have been taking Tylenol as soon as I got out of the OR. Hopefully I am an exception cause as I said, the mastectomies and reconstruction was no where near as painful as the port. It took over a month for the incision to heal but I think that was cause my white blood cells plummeted after the AC. Once I got on neulasta I headed up within days.

@sushilady1- I am sorry that this happened to you. I have to ask why didn't you take something for it? Could your chest be sore because of your cancer?

As crazy as this sounds, I did not think of taking anything. I live alone and was diagnosed in my 30’s. I was super healthy and fit and have never been sick. I did not even have any painkiller in my home. I far as I know the ports are always inserted on the opposite of the cancer.

@sushilady1- I hear you. This must have opened up a whole new world for you. How are you doing?