Thanks for all the great canker sore remedies! Oh my, we have heard everything from L-lysine, zovirax, zilactin and B-12 to ice chips, butter, licorice and believe it or not, ear wax! He'd have to get pretty desperate to try ear wax - and I'm assuming you would use your own! Yikes. We also got some good recipes for a mouthwash that does help. Dr Keller gave him prescriptions for an antiviral and an antibiotic, as well as a big bottle of painkillers, but the best thing he gave us was the hope that these shouldn't last for the entire time he's on Afinitor, but should subside after a while. That was the best news.
Thanks for adding my sister Lynne to your prayer lists. She's decided to start treatment in Tucson and stick with the plan to move to St Louis at the end of the year. She has started her own blog, on a CaringBridge site. You can follow her at caringbridge.org/visit/lynnederedita.
Love, Juli
Week One and Trip's Homecoming
The first week on Afinitor has gone fairly well, but by the end of the week, Bobby started experiencing some significant mouth pain, canker sores and cold sores at the same time. He's trying different mouth rinses and over the counter meds to get some relief. We'd welcome any home remedies anyone out there has to offer! Also trying to find healthy foods that are on the soft side, looks like we'll be eating a lot of soup these days!
The highlight of the week was going to Tinker AFB to see Trip return from his 4-month deployment to the UAE. He looked great and was very glad to be back in Oklahoma. Typical Trip, he was the last one to get off the last bus, stepped off with his head buried in a copy of Sports Illustrated, with OSU on the cover, glanced up and casually says, "oh hey, what's up?" He does love those Pokes! But unfortunately, they let him down at the game on Saturday, losing to Houston. Bummer.
The highlight of the week was going to Tinker AFB to see Trip return from his 4-month deployment to the UAE. He looked great and was very glad to be back in Oklahoma. Typical Trip, he was the last one to get off the last bus, stepped off with his head buried in a copy of Sports Illustrated, with OSU on the cover, glanced up and casually says, "oh hey, what's up?" He does love those Pokes! But unfortunately, they let him down at the game on Saturday, losing to Houston. Bummer.
Afinitor: Day 1
Bobby started taking Afinitor yesterday morning. So far so good. He's noticing a few side effects, like dry mouth and a little queasiness, but it's tolerable. He's not looking forward to being on this long term, but we're hopeful it will be effective.
Today is our 28th wedding anniversary - whew, it's been a wild ride, but one I wouldn't trade for the world. It would be nice if the next 28 would be filled with more great times with friends and family, and a little less time in doctors offices and hospitals, but these are things we can't control, so we'll just try to appreciate the good times when they come along.
Today is also my sister's Lynne's 50th birthday. She's celebrating at the beach in South Carolina at her husbands family reunion. I'm hoping she's having some quality time for she and Rick to consider all the options for her treatment. We learned in St Louis last week that she's eligible for a Phase I clinical trial that sounds promising but would involve moving sooner than they had planned. There's a few options she could pursue in Tucson, but there's side effects involved and the timing could affect her eligibility for the trial. They have a lot to consider.
Thanks again for checking on us. Love, Juli
Today is our 28th wedding anniversary - whew, it's been a wild ride, but one I wouldn't trade for the world. It would be nice if the next 28 would be filled with more great times with friends and family, and a little less time in doctors offices and hospitals, but these are things we can't control, so we'll just try to appreciate the good times when they come along.
Today is also my sister's Lynne's 50th birthday. She's celebrating at the beach in South Carolina at her husbands family reunion. I'm hoping she's having some quality time for she and Rick to consider all the options for her treatment. We learned in St Louis last week that she's eligible for a Phase I clinical trial that sounds promising but would involve moving sooner than they had planned. There's a few options she could pursue in Tucson, but there's side effects involved and the timing could affect her eligibility for the trial. They have a lot to consider.
Thanks again for checking on us. Love, Juli
The Law of Averages
Amazingly, we heard back from Dr Keller yesterday, just 24 hours after our visit - and he had already spoken to Dr Sosman in Nashville! We figure the quick response was to bring down the average wait time, after all those days & weeks of waiting earlier. Not that we're complaining - we were thrilled to get news, and the news is pretty good. They both recommend starting Bobby on Afinitor, a very recently approved drug for metastatic renal cell. In fact, a recent Phase III Afinitor study was halted midway because the results for the group taking Afinitor was so positive, they allowed all participants to start taking it. The side effects are supposedly mild, but that's a relative statement and we've learned that toxicities and tolerance of them is very individual. We're working through insurance/pharmacy issues, and should hopefully start treatment early next week.
Juli
Juli
A Mixed Review
Going into yesterday's appointment with Dr Keller, we had little to no expectation of the results, but were still surprised by what we learned.
The right adrenal gland was significantly reduced in size, from 2.3 x 2.0 cm to 1.1 x 1.2 cm.
That's the good news.
The left adrenal, however, had increased in size, from 1.9 x 1.4 cm to 2.3 x 2 cm. So, how is a systemic treatment like IL-2 effective on one tumor and and ineffective against another?
The spots we've been watching on the lungs continue to be unchanged, as they have been for the last 2 years.
We left with more questions than answers, and several possible plans of action. But the first step is that Dr Keller is going to consult with Dr Sosman on Friday and make a recommendation. We're considering surgery, a variety of treatment combinations, clinical trials, and the best timing for all of it. Praying for wisdom & discernment.
The right adrenal gland was significantly reduced in size, from 2.3 x 2.0 cm to 1.1 x 1.2 cm.
That's the good news.
The left adrenal, however, had increased in size, from 1.9 x 1.4 cm to 2.3 x 2 cm. So, how is a systemic treatment like IL-2 effective on one tumor and and ineffective against another?
The spots we've been watching on the lungs continue to be unchanged, as they have been for the last 2 years.
We left with more questions than answers, and several possible plans of action. But the first step is that Dr Keller is going to consult with Dr Sosman on Friday and make a recommendation. We're considering surgery, a variety of treatment combinations, clinical trials, and the best timing for all of it. Praying for wisdom & discernment.
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