Off Nexavar for 2 weeks

Ed has not had any better days since I last wrote; in fact, he has hardly eaten anything for the last several days because his mouth sores hurt and it is simply too difficult to swallow. He has now lost 28 pounds since this ordeal began. Today, the oncologist saw him and stopped his taking the cancer-fighting drug Nexavar for 2 weeks (he only began taking it May 1). If the mouth sores are from the Nexavar, he should have some healing and be able to eat again. If they heal, he may start taking Nexavar again to see if they return. There is an alternative drug, Sutent, that he may change to down the road if necessary. If the mouth sores are actually from the radiation treatment he had, they should heal on their own but it could take weeks. I was chastised by the doctor (can you believe that!); I'm not to make a big issue out of getting Ed to eat. He is to eat whatever he feels he can whenever he feels like it. Even if he goes back on Nexavar, we don't have to be so stringent about following the timing of eating and taking the drug (I probably was a bit overboard about that). The doc says the body is smarter than we are and will accommodate what's going on. He says the nutrition Ed does take in is probably mostly "feeding" the main tumor. I don't really understand how that works nor the logic of not eating, but he says there is no danger of organ failure or anything like that. The swallowing difficulty, however, is most likely due to the cancer. There is a lesion on the back of his throat that is probably the culprit. The loss of appetite is also due to the cancer.

Ed is to keep using the "Magic Mouthwash" prescription he started the other day. I am to call the oncologist by Friday if the mouth sores don't improve. Not sure what he'll do about it then but I'm hoping I won't even need to call. Ed will also start wearing a patch for pain control tho it is a low-dose medicine--he's just glad it's not another pill to swallow--yet he is still to take Tylenol for pain as needed. We go back to the oncologist May 30.

A priest from our church is coming this afternoon to give him Communion and the sacrament of Anointing of the Sick. Maybe this spiritual boost will do some good. Thus ends today's update.
Joni

3 not-so-good days

Joni here. Ed always tries to sound upbeat in his blogging, and I think he is making an effort to keep his spirits up. However, Mon., Tues., and today have been very hard days for him. I thought he was a little perkier, more alert, more strong-voiced on Monday even tho he still "deep rested" in the recliner all day. He had a lot of trouble eating because of mouth soreness inside his mouth, but he did try. His diet lately has been all soft stuff and drinkables. His hip soreness (and weakness, I think) increased to the point where, instead of using the cane to assist his right side when he walks, he now places it in front of him and leans with both hands or grabs furniture and such to help keep his balance. Then on Tuesday, the mouth became even more of a problem. He barely ate anything all day. We had a consult with the oral surgeon who will extract the abscessed tooth, but before he schedules that the oral surgeon needs to talk with the whole gamut of Ed's doctors to be sure he can handle the sedation and the procedure. Getting ready to go to that appointment really took a lot out of Ed. Today he has not gotten out of bed at all except to go to the bathroom. He has eaten virtually nothing today. I called the doc, with these results: He is now on Magic Mouthwash which numbs the mouth and throat and helps the ulcers and soreness heal. From what I have read online, the radiation treatments that he had cause this problem, and it could take 7 to 14 days for the cells inside the mouth to rejuvenate. A social worker will be arranging for him to have a walker. Unless he gets some strength back in a hurry, we may have to add wheelchair to that request, too, so that I can get him to places he needs to be more easily. We're expecting a call to schedule a visit to the oncologist earlier than his May 22 appointment. Unfortunately, the doc is on vacation this week, so it will probably be next week til we see him.

Sorry this is all not-so-good news. I'm having difficulty sounding upbeat the way Ed does when he writes. These after-effects of the radiation--and maybe the start of effects of the Nexavar--are much more intense than we understood they would be. I'll feel better if he can just eat again--and so will he, no doubt, even if his taste buds aren't working!

May 6

No appointments this past week since the radiation ended Monday, just pills and pills. Side effects so far are quite a bit of hair loss (looks like a full waste basket) but I still have enough left that Joni says it looks better than it used to because I don't have cowlicks now! One aspect is that there is all this white hair, but underneath there was still quite a bit of brown. Probably a few more days until it's all gone.

Other stuff - a slight forehead rash, little scalp tenderness. Gum and cheek sores. Tooth ache mostly better, but DDS still wants to pull it, have to get Oncologist's OK, he'll do a blood draw. Maybe get it all done this week. Appetite still poor, taste buds essentially non-operating. Probably still losing weight as a result. Hip soreness is still here, making it harder to balance and navigate.

Nexavar isn't too much of an issue so far, I just hope it's working. Fatigue has been pretty extreme this week. Don't do much but relax and "deep rest" in the recliner all day.

Joni still working like a trooper. Mowed again, but that's something she likes to do, so maybe that's a good thing. Essentially cooks 2 meals for each meal - mine and hers. Most of you will appreciate the fact that she has built up this file, starting at Day 1, with notes on every appointment, medication change, Dr. comment, symptom update, etc. Mrs. organized!!

Willl catch up as news develops. Appreciate your interest.

Ed

Radiation ends!

Well, waited a little extra time to post this since this is a sort of switch-over period. That last radiation treatment must have been a doozy. The Dr. did reduce my steroids again to just once a day, part of the weaning he had described. Today, though, has been a blur. Slept in til nearly 8, ate & took my plethora of pills, then pretty much stayed in my recliner and slept or deep-rested til lunch, more of the same this afternoon. I guess it's the sleep, but I've been a bit off the deep end a couple of times today, apparently goofing up our phone number, etc.

Still have my hair, but last night it started coming loose a few strands at a time, won't be surprised if that continues.

Hip has started to feel sore again, Dr. thought that would be normal, it's still controllable with just Tylenol.

Have to watch the timing of the Nexavar, can't take with food (dilutes its effectiveness) so it has to be an hour before or 2 hrs. after eating. I take 2 tablets, twice a day.

No medical meetings for a while (we do intend to check in with the Oncologist as soon as we get our questions lined up).

Meanwhile we continue to appreciate all the prayers, e-mails, best wishes, cards, calls, etc. Keep it up, please.

Ed

Brief update

Two Dr. visits today. Urologist was a consult, talked about Oncologist being "Doc in charge" for now. Don't have to go back to this guy for 4 months unless something changes. He did say that the cancerous kidney still appears to be functioning OK.

Afternoon's radiation was #8 of 10. Still no side effects except fatigue. Just chillin.

Weight down again but could be due to total lack of taste bud activity. Making milk shakes (thanks to my old drugstore training), pretty much just snacking through the day. Puddings are good. Sweet potatoes were good. Sound like sugars are a positive?

Odd changes. More later.

Ed

Unexpected (but good) doctor visit

This time it's Joni. After Ed's radiation treatment today, he saw the radiation oncologist. I felt like I went to class without doing my homework because we didn't know we'd see the doc and Ed's collection of notes sat at home. Basically, the doc was checking in to see how he was doing. His comment was "You're looking better." Don't know what that was based on--maybe these things: 1) the doc seemed surprised that Ed was still just taking Tylenol for pain and then only when he feels the need, 2) the hip pain is lessened thanks to the hip radiation apparently, and 3) Ed stopped using a cane to get around the house and only takes it along on outings. Last week his steriod pills were cut back from 4 per day to 3 per day, and today the doc said to drop to 2 per day. We thought that wouldn't happen until radiation was over, so we're taking it as a good sign. The best part was that on the way home, Ed suggested we stop for ice cream. Since not much food is appealing to him these days, I jumped at the chance to spoil our supper this way. The other surprise today was that the drug he is to go on, Nexavar, is going to be delivered to us tomorrow. We need to be in touch with the oncologist for instructions because we thought he wouldn't have it until next week.

Weekend update

OK, after the first 4 radiation treatments there appear to be some trends. No probems with the actual radiations, quick and easy. Been getting pretty fatigued, though, the rest of the day. Taste buds out of whack, appetite up and down, indigestion continues (doctor says it's from the steroids), feeling like I'm in a "fog", etc. Wonder if it will accumulate further or level off?

This week will have 5 more daily treatments and a follow-up Urologist visit on Thursday. Oh boy, more medical outings!

Had quite a few visitors this weekend. Sherry and Jeremy came in for the weekend. Ed, Kurt, and Kyle stopped in. Dave was here Friday, Judi stopped, Becky will be here this afternoon, talked to Debbie. Neighbors from both sides stopped by. Everybody offers support, willing to help, etc. Nice. Glad that Joni has this support, she's bearing up well and doing a lot to keep things smooth. I spend a lot of time in my recliner. Watched the OSU spring football game on TV Saturday with several of the visitors and enjoyed that.

Have received 3 gift baskets (fruit, cookies, Tootsie Rolls), many cards and e-mails with prayers and well-wishes, and phone calls from old friends all over the country. Really helpful.

I suppose if there's an update I'll do it mid-week but also could be next weekend. Meanwhile, thanks to all of you.

Ed