August 6, 2013 at 7:04 pm #74423kris00jSpectator
I’m sorry to hear all of this. Hopefully the pain is related to the SBRT treatments.
I know how you feel about not wanting others to know how you feel or worry: its tough. Losing hope is, unfortunately, a side effect (if I can say that). I think we have all been there. I can say the mind can be a terrible thing. My mind was causing all sorts of pain two years ago…. I couldn’t stand the pain and took loads of oxycodone. They did a bone scan and an MRI and found nothing! And miraculously, my pain went away (mostly).
This forum is for all of us. Share good news, bad news, worries, information: anything you need! We are all here for each other.August 6, 2013 at 6:13 pm #8720mcwgoatSpectator
I haven’t posted for awhile regarding what I am going through but I think now is the time to do so. I was on vacation last week with family in North Myrtle Beach, SC. I had a good time but started experiencing more abdominal, liver and back pain. Luckily, I had my oxycodone with me and it helped. Just sad for me that I had to start taking the pain med on a daily basis. Also, my hair started coming out – almost completely bald – but I’ve chosen, at this time, not to shave the rest. I’m wearing hats when outside. Sorry for telling the story out of sequence but I started Paclitaxel on 7/12, had it again on 7/19 – thus the hair loss. I got some time off to go on vacation with family and will start back on the Paclitaxel 8/9. I’m not sure what the cause of the increased pain is but it has me worried. I can’t wait to talk to the doctor on Friday. Also, to backtrack, I had five SBRT treatments in May and the doctor has told me that it could still be working and causing lower abdominal pain due to inflammation. I can’t wait for my next CT scan which will probably be in September. Not sure how long I’ll be on the Paclitaxel. The doctor said if its shows signs of working, and she has seen success with it, then she’ll keep me on it as long as my counts don’t go too low. There are other options the doctor has for me. They actually took my biopsy specimen from August 2011 and are doing some kind of gene mutation – not sure if I have this all accurate but it something with targeting my specific DNA with certain chemo to see what works best for me.
Sorry for going on so long but I really felt the need to tell my story. This past week I really felt that I was losing hope but I didn’t want my family to know. Sometimes it’s hard to let them know how I really feel. I don’t want them to worry about me. I feel bad that I’m putting them through this. They’ve been through so much with me, especially the last few months with so many hospital stays for having the stent put in then fevers and infections – luckily not related to the stent. I had a fungus infection in my blood and biliary system which took a few weeks to clear up.
Again, thank you for letting me go on. I feel better just telling my feelings to you.
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