[CarolineC]

Thank you Sharon for your post. It has come at just the right time for me. I feel so alone in dealing with this mess.

Before my Herceptin was delayed I was hurting already and it got worse before it got any better. My upper back and ribs were hurting all the way around to the front and my stomach felt like it had been punched. After the reloading dose the stomach finally settled and a massage therapist was able to help my right side so mainly the pain was in my left shoulder with radiating pain to under my left arm. I was sleeping sitting up with a heating pad alot of the time and finally was using Motrin. I hate resorting to pain meds. I have spent the two weeks that my son had off for spring break sitting on the couch all day with the heating pad. I wanted to go to Hawaii but the delay in my Herceptin made my next treatment hit right in the middle of spring break. Turns out I wouldn't have been able to go anywhere anyway. At the least I wanted to go skiing for a day since I had been feeling good enough to do that and we live 5 minutes from a ski hill. I am so discouraged. All I have done is sit. I couldn't lay down until last night for the first time in 6 weeks and am wondering if that's because I had another Herceptin last Friday.

To top it off, the onc at the larger centre said they don't delay Herceptin treatments based on fluctuations in echos. So I'm in pain, now my TMs have risen as well, and I'm supposed to have an MRI on my adrenal next week. Before the first time my Herceptin was delayed my sternum was stable and the adrenal whatever was enlarging slowly and my CEA, although high, was fluctuating abit and my 15-3 was going up slowly, but still within the range of normal. After the second Herceptin delay I'm in pain and my CEA has risen as well as the 15-3.

I discussed changing my treatment to Aromasin for the time being because I have my son's grad coming up and I don't know how I would be on TDM1 or chemo. But apparently Aromasin can drive up the blood sugar. I have spoken with a pharmacist to see if I can even metabolize it, because with Gilbert's Syndrome I have an impairment of an enzyme. I haven't heard back from him and I decided not to start the Aromasin when I have other things going on and a scan coming up.

Sharon, thank you for all the information. I am so frustrated with trying to figure things out, but your information has helped. The larger centre onc has said that there is a clinic they send people to for treatment, and the local onc has said they can administer it in the hospital since it's not a Cancer Agency. All I know is I just want to have fun and I am having anything but. I see friends on Facebook inviting me to play games or talking about "fluff stuff" as I term it, without a care in the world.

I feel like I'm living in a parallel universe as a spectator watching other people live carefree while I spend my time trying to strategize and find information to help save my life. I'm sorry I'm such a downer. This is not the person I usually am-I am usually a glass half full and positive person who can see the beauty in things and appreciate my life. I think of my sister who passed away from MS 12 years ago and wasn't able to do many of the things that I can. I can walk, talk, feed and dress myself and go out for lunch with friends. She couldn't. It's just when I'm in pain it's scary.