Treatment # 3 is now in the history books and all seems well. They were able to find a larger vein yesterday (& today), so no problems with pain in the vein following treatment. The anti-nausea meds continue to work, as he's experienced no adverse side effects.
Tonight is "potluck" night here at the Lodge. They are providing roast turkey and all the residents chip in and provide the side dishes. So I'm off to the store for some supplies to whip something up.
Our love & appreciation go out to you all. We so appreciate your kind thoughts and prayers. Will keep you updated as we move along through this trial.
Wednesday, April 18, 2012
Monday, April 16, 2012
Back "home" again at Hope Lodge
We checked into Hope Lodge yesterday in the late afternoon after attending an event for Head & Neck cancer survivors at the American Cancer Society, Cleveland. It involved a wonderful afternoon of food tastings, raffles, talks by oncologists from three of the Cleveland hospitals (UH, Cleveland Clinic, & Metro)...John's ENT oncologist, Dr. Zender, being one of them. There had to be well over 100 people there....it was amazing to realize they all had a cancer similar to John.
After getting settled into our room, we were both tired and I thought I'd probably just pass out and sleep 'til the A.M.....NOT!!! Maybe it was just the 1st night in a strange bed, or anxiety about beginning the new treatment....but I hope I sleep better tonight.
So, his 1st treatment was at Noon today and was well tolerated. The only problem was the vein they were able to find for the infusion was a small one near his left wrist and by the end of the infusion time, the vein was causing him a substantial amount of pain, but was remedied by the application of a heat-pak for several minutes. They're going to try to find a larger vein tomorrow, if they're unable to do so, they'll slow the rate of infusion to 60 minutes, as opposed to the 30 minutes it normally takes. Hopefully, one of these options will be the solution for him.
This afternoon we walked around the corner to a hair salon to see if we could get his hair cut. He lost all his hair last summer with the chemo and it's been growing back in since last fall. Although his hair came back in the same color as before, the texture is a bit different....very soft like a baby's hair and "fuzzy". We even tried my gel on it, but it still would not lay down, so we decided it's time for a cut.
We, along with the other Hope Lodge residents, were treated to a wonderful dinner this evening provided by the Cleveland Area Realtors Ass'n. consisting of chicken (both fried & baked), rice w/gravy, broccoli, and a variety of desserts. I continue to be amazed by the goodness of people reaching out to make the road for these cancer survivors (and their caregivers) a little less rough. We are truly blessed.
This afternoon, while enjoying a latte at Starbucks, I picked up a small publication, the Greater University Circle Neighborhood Voice, which had a wonderful article that just spoke to me. Throughout this "cancer process", I've occasionally had "little breakdowns" when I just become overwhelmed. The thing is it never seems to be the big things (like John's cancer or my brother's situation) that puts me over the edge....it's always the "piling-on" of the small things. This article talked about how we manage to "hang in there" through the big things, but it's the burden of everyday duties like bill-paying, grocery shopping, cooking, caring for our homes & yards, and the, seemingly, endless list of duties that are often overwhelming & exhausting. And all along, I thought it was just me.....turns out I have a lot of company. Quite a relief, actually.
After getting settled into our room, we were both tired and I thought I'd probably just pass out and sleep 'til the A.M.....NOT!!! Maybe it was just the 1st night in a strange bed, or anxiety about beginning the new treatment....but I hope I sleep better tonight.
So, his 1st treatment was at Noon today and was well tolerated. The only problem was the vein they were able to find for the infusion was a small one near his left wrist and by the end of the infusion time, the vein was causing him a substantial amount of pain, but was remedied by the application of a heat-pak for several minutes. They're going to try to find a larger vein tomorrow, if they're unable to do so, they'll slow the rate of infusion to 60 minutes, as opposed to the 30 minutes it normally takes. Hopefully, one of these options will be the solution for him.
This afternoon we walked around the corner to a hair salon to see if we could get his hair cut. He lost all his hair last summer with the chemo and it's been growing back in since last fall. Although his hair came back in the same color as before, the texture is a bit different....very soft like a baby's hair and "fuzzy". We even tried my gel on it, but it still would not lay down, so we decided it's time for a cut.
We, along with the other Hope Lodge residents, were treated to a wonderful dinner this evening provided by the Cleveland Area Realtors Ass'n. consisting of chicken (both fried & baked), rice w/gravy, broccoli, and a variety of desserts. I continue to be amazed by the goodness of people reaching out to make the road for these cancer survivors (and their caregivers) a little less rough. We are truly blessed.
This afternoon, while enjoying a latte at Starbucks, I picked up a small publication, the Greater University Circle Neighborhood Voice, which had a wonderful article that just spoke to me. Throughout this "cancer process", I've occasionally had "little breakdowns" when I just become overwhelmed. The thing is it never seems to be the big things (like John's cancer or my brother's situation) that puts me over the edge....it's always the "piling-on" of the small things. This article talked about how we manage to "hang in there" through the big things, but it's the burden of everyday duties like bill-paying, grocery shopping, cooking, caring for our homes & yards, and the, seemingly, endless list of duties that are often overwhelming & exhausting. And all along, I thought it was just me.....turns out I have a lot of company. Quite a relief, actually.
Tuesday, April 10, 2012
The 'trial run' of Belinostat
We've just returned home from an overnight at UH......amazing how tiring 30 +/- hours in a hospital can be. John had a "trial run" with the new clinical trial drug. This is done so they can monitor him and take regular blood work, to be sure it will be well tolerated. The good news is all went well.....no nausea or adverse side effects and he was able to get a fairly good night's sleep.
The infusion schedule for this drug is a week of treatment (Monday-Friday) followed by 2 weeks off, with blood being drawn every Monday, even during the "off" weeks. Treatments will begin next Monday (4/16) and we will, once again, become residents of the Hope Lodge during the treatment weeks.
As the infusion time of this drug is relatively short (about 1 hr....including the anti-nausea pre-meds), and John seems to tolerate it well, we're hoping to take advantage of the warmer weather in Cleveland this time of year and take in more of the museums, parks, and a couple Indians games during our time there. We're going to have a lot of time on our hands....can't spend it just sitting around the lodge.
The infusion schedule for this drug is a week of treatment (Monday-Friday) followed by 2 weeks off, with blood being drawn every Monday, even during the "off" weeks. Treatments will begin next Monday (4/16) and we will, once again, become residents of the Hope Lodge during the treatment weeks.
As the infusion time of this drug is relatively short (about 1 hr....including the anti-nausea pre-meds), and John seems to tolerate it well, we're hoping to take advantage of the warmer weather in Cleveland this time of year and take in more of the museums, parks, and a couple Indians games during our time there. We're going to have a lot of time on our hands....can't spend it just sitting around the lodge.
Sunday, April 8, 2012
Clinical Trial
It's been a couple months since my last post, mostly due to there not being much news to share. John's recovery from the November - December radiation treatments seems to be more or less complete. His taste buds and saliva production have substantially improved and he has little to no eating and/or swallowing issues.
He had his post-treatment scans (both PET and CT) in late March and we have received partial results. They seem to indicate all areas are stable, which, in essence, means no growth. As long as we can received "no growth" reports, I'll consider it a victory.
So now we move on to more chemo, as John will be participating in the clinical trial for a new drug called Belinostat. Following is a description of the drug found in my internet research:
"In pre-clinical trials belinostat has shown to be effective against multiple cancers by inhibiting cell proliferation (inhibiting cancer growth) and inducing programmed cell death (“apoptosis”) in tumour cells (the tumour cells are forced to self-destruct)."
Our prayer is this drug will, indeeed, do what it has shown promise of doing. We'll head to Cleveland tomorrow, where they will do a "trial run" on John, which will involve administering a lower dose of the drug and monitoring him for 24 hours to assure he will be able to tolerate with no difficulties. Assuming all goes well, he will begin the "full strength" treatments next Monday (4/16). The schedule is 5 days of treatment, followed by 2 weeks off before the next treatment. During the week-long treatments we will, again, be residents of the Hope Lodge.
So, that is where we stand. We continue to appreciate all your thoughts and prayers and are looking forward to good results from this new phase. I will continue to update as we make our way through this treatment.
He had his post-treatment scans (both PET and CT) in late March and we have received partial results. They seem to indicate all areas are stable, which, in essence, means no growth. As long as we can received "no growth" reports, I'll consider it a victory.
So now we move on to more chemo, as John will be participating in the clinical trial for a new drug called Belinostat. Following is a description of the drug found in my internet research:
"In pre-clinical trials belinostat has shown to be effective against multiple cancers by inhibiting cell proliferation (inhibiting cancer growth) and inducing programmed cell death (“apoptosis”) in tumour cells (the tumour cells are forced to self-destruct)."
Our prayer is this drug will, indeeed, do what it has shown promise of doing. We'll head to Cleveland tomorrow, where they will do a "trial run" on John, which will involve administering a lower dose of the drug and monitoring him for 24 hours to assure he will be able to tolerate with no difficulties. Assuming all goes well, he will begin the "full strength" treatments next Monday (4/16). The schedule is 5 days of treatment, followed by 2 weeks off before the next treatment. During the week-long treatments we will, again, be residents of the Hope Lodge.
So, that is where we stand. We continue to appreciate all your thoughts and prayers and are looking forward to good results from this new phase. I will continue to update as we make our way through this treatment.
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