Am I being unrealistic.

Hi 18 months ago I had to change hematologist, darn him for retiring. Anyway very first meeting with new hemo she mentioned spleen removal, even after years of successful Rituxan treatments. Then my wife got sick and passed from brain cancer. I found it hard to do both my and her need for care so I stopped. I started going back to her again back in February had a little time left on the previous authorization. Count was pretty much the same 30,000ish. They went ahead and got authorization to treat again and we started on the 26th. The first round was like a circus Dr’s late first words out of her mouth is she was in the parking lot talk with her lawyer. It’s 10:30/11:00 before we even start not good. Of course I have a reaction, temp spikes they stop and start full boring solution. Oh dr. went to lunch (?) nurses are in shock, her fellow doctor just stops the treatment. I recover, they decide I can come back the second day (oh joy). Second day goes off without a hitch, start at 9 finish by 3. Round two get their 8 am sit around until 9:30, they get my blood sample almost 10:15 dr. sees my potassium is marginally elevated. Orders another blood draw. 11:45 they finally get started. Got it done but wasted almost an entire day. During this time I’m having words with my doctor, the head nurse as to why we couldn’t start earlier. Instead of starting earlier they give me an appointment for 9:30 which if previous work ethic holds true they’ll be lunching before I start treatment. So I brashly ask the nurse treating me to schedule my fourth appointment 8:00 start and a follow up after my fourth treatment. She says we only schedule one week before I laugh and said do it darn it, I’m tired of this. She gets it done. So far today I have calls into my primary care doctor, cancer center head nurse, and my insurance company.

That sounds awful, unprofessional of the Doctor. It seems like they could make it easier for you.

My condolences on losing your wife-how devastating. Brain cancer is such a difficult one to survive(My sister succumbed to a glioblastoma at age 47)

Sorry to hear about the treatment you received.Time for a new hematologist.I had my spleen removed and it helped for 9 months.My suggestion to people is do it as a last resort.I have had Rituxin and was in remission for 8 years.Just started it again and hoping for at least another 8.I can handle infusions every 8 years!.I am also a cancer survivor and an oncologist told me patients need to be their own advocate When my current hematologist met with me she recommended a line of treatment.I told her I wasn't sure but she was the doctor so I would follow her plan.She stopped me and told me that I had a say in my treatment and my input was important. Needless to say,I have stayed with her.Good luck!

So sorry for your loss, I lost my mother to brain cancer also. Getting "good service" from your Dr. and treatment center is not being unrealistic however cancer treatment centers are a beast to manage. I had the choice of two to pick from both operated by the same hospital system. After 9 months of the same hemo working in a 30 patient IV station running 2-3 shifts of patients I switched hemos and locations to a 12 station facility. All I need is a weekly blood draw and an NPlate injection. Sometimes it would take up to 4 hours and averaged 2 hours. When I switched it dropped to one hour max, except the day I showed up early. I found out the computer would not spit out my wristband until 15 minutes before my appointment. As far as the spleen comment, it's part of their training, pull the ITP patient checklist out of the drawer and it's on there. Shortly after being diagnosed I learned enough here and from recent studies to become my own advocate and TELL my hemo what my treatment would be. I have been picking the what, where, and when since. Medicare and my supplement pay 100% of my Nplate treatment, and I have settled in to 100-130 readings for months. Your statement of "years" of rituxan treatments scare the pants off me, I refused even one treatment due to the side effects and success ratios and lengths published. My current hemo and I see things eye to eye and if we did not I would be looking for a new one. Best of luck!