retiredteacher wrote:...Any advice would be helpful. I think I need to def. see what Stanford has to say..
retiredteacher wrote:Hi. Just completed 5 wks neoadjuvant Xeloda/rad. After initially feeling very optimistic about my drs. and the local hospital am now having some reservations, but unsure if justified. First two weeks went smoothly. Last three weeks extreme diarrhea and dehydration. Rec'd 2 liters IV H2O nearly daily by the final week. 20 - 25 lbs water retention in blown-up feet, ankles, legs, thighs. BP dropped to 90/40 on a couple of occasions; chose to stop BP meds. Finally asked them to stop with the IV fluid and suggested that the Advil might be contributing to the edema (Dr Google.) I believe the patient has the responsibility to be informed and to be his or her own advocate, and thought I had done a pretty good job upfront but have to state that my naivete and ignorance far outweighs my knowledge. I am leaving out details, but overall, it seems the left hand doesn't know what the right hand is doing, but I don't possess the expertise nor the mental state to really evaluate but I was pretty scared over the Thanksgiving holiday - BP, water retention, diarrhea. Hospital's Nurse Navigator program was only a pre and post questionairre - that's it! Dr's appear to not be a truly interdisclipinary team; each one one works within their own box of expertise, and it was never evident that they ever communicated with each other (aside from the initial tumor board mtg.) Oncologist has a policy of email communication only, and only to medical assistants, with a 2 working day response time, but first email question contact took a week because the medical assistant was off duty. Could not get in to see oncologist at the four week mark as directed (I did not know appts were booked a month in advance for him, and could not get to see him until one day after the last radiation/Xeloda treatment.) Oncologist said the radiologist should have backed off treatments due to my dehydration etc. and gave me a prescription for diphenoxylate-atropine (lomotil) which was effective. Weight dropped from 145 to 119 in one week. Surgeon says I came in way to early to see her (at the two week post Rad mark) and that I needed to see her at the two week post radiation mark. (?) I made a huge mistake in not keeping my GP in the loop since day one - saw him yesterday re: what to do about the BP. He was not consulted on any of the cancer referrals - my mistake, I went with the GI doc's and our past family experience, but wow, things have changed in the last decade. We only have one GI surgeon locally and she has a very good reputation. BUT GP is concerned about the planned surgery (laparoscopic LAR) and is recommending that I get a second opinion from Stanford surgery. I have never been sick before; want to have a high confidence level in my team and want to have a positive outlook but at this point pretty confused. Diagnosis of IBS 4 yrs ago, w/o lower scope. Rectal cancer about 8 - 10 cm from anal verge. PET scan shows no obvious organ or lymph invasion. No initial diagnosis, aside from cancer, rectal. Sorry this is so dang long. Any advice would be helpful. I think I need to def. see what Stanford has to say. If this post needs to go on another topic or list, please advise. I need to communicate with someone.
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