After an absolutely delightful trip to New Mexico I returned to my real life in Connecticut on Monday. I saw the oncologist for Gemzar and Zometa on Tuesday and have had no real problems as a result, but my fatigue level is getting worse and worse. I don't know whether it was the travel, the slightly lower steroid dose, the chemo, or a combination of all three, but I'm having trouble getting myself up and at 'em in the morning and by the time I get home from whatever small amount of time I spend at work I collapse into the recliner and don't generally move except for dinner. My pain level is also increasing and I'll have to raise the Oxycontin dose with the next refill and I'm noticing swelling in my feet and ankles and abdomen.
I'm scheduled for two more doses of Gemzar, which will make a total of eight, and then a scan on December 8th. I don't expect anything different from this scan than we have seen with all the preceding ones since August of 2008 - slow but clear progression. And that will mean the end of Gemzar and all active treatment for the cancer (I will continue the Zometa for the time being but it's not considered active cancer treatment). Between now and then I will try another steroid dose reduction next week. If I feel worse I'll bump back up to the original dose and leave it be. If I feel better I'll keep trying small, slow dose reductions until we see how low I can go.
There is still much on my horizon. I've started on Emma's quilt, family will be here for Thanksgiving and Christmas and I suspect there will be other visits from family and friends. I'm just having a little trouble, at this point, seeing more than a few weeks ahead of my nose. I know there's nothing to do but keep putting one foot in front of the other and see where it leads me, but I'd like to get my smile back to keep me company.
This weekend will be graced with a visit from Lindsay and Jacob and a batch of green chile stew made from the chiles I brought back with me from New Mexico. The weather in Connecticut swings wildly from beautiful, crisp and clear to gray, dreary and wet but at least we don't have 2 feet of snow! (Sorry you guys in Colorado.)
More next week when I know how the next steroid experiment goes.
Lisa
Friday, October 30, 2009
Friday, October 23, 2009
What's Up With the Doc 80? - Land of Enchantment
I'm sitting at my sister's computer for this week's update, enjoying the New Mexico sunshine streaming in through the window. I've already had my first Lotaburger and tonight holds the promise of chile relleno enchiladas and El Modelo tamales. My mother beat me here yesterday, Chris and Sheri arrive this afternoon and Emma and her buddy tonight. My best childhood friend was here to greet me last night and will be over for gossip and giggles for a while this morning before she heads back home and my stepbrother, Bill, stopped by last evening. He was here for work and also heads home today. Tomorrow we all make fools of ourselves at the CSU/UNM volleyball game, the austensible excuse for this little gathering. More than anything, I am thrilled to be in my beloved New Mexico with friends and family with the largest challenge on the horizon being getting my frozen green chiles home with me on Monday.
After the post-chemo pain resolved last week I was more fatigued than usual until the middle of this week. I attribute that to the combination of chemo and my steroid dose reduction so I've decided not to reduce the dose further until the week after my next chemo. I will enjoy my prodigious appetite while able to enjoy the New Mexico cuisine and not worry about fatigue or nausea cramping my style. That's it for where things stand with current symptoms.
I read a news release this last week about an article published in the International Journal of Cancer about survival improvement in people with stage IV lung cancer and bone metastases who are treated with Zometa. It was a small study and the patients were put on the Zometa for bone pain. Turns out it didn’t help the pain, but overall median survival in the group treated with Zometa was over 19 months, while survival for the chemo only (carbo/taxol) was just over a year.
That’s a big difference! In fact, I will reach the Zometa group’s overall median survival on Sunday. My oncologist started me on the Zometa months ago when I started to develop new bone lesions. As you know, I’m on pain meds to control the pain, but we’ve continued the Zometa to try to prevent more new bone lesions and to delay time to fracture of any that I have. At least a part of me feels like the Zometa is playing a significant part in keeping me alive and keeping me active. I feel like I live a charmed life regarding my oncologist and his educated guesses about how to treat me.
That's it for now. I'll be back in Connecticut Monday afternoon and pick up with enjoying the New England autumn after this little break of enchantment.
Lisa
After the post-chemo pain resolved last week I was more fatigued than usual until the middle of this week. I attribute that to the combination of chemo and my steroid dose reduction so I've decided not to reduce the dose further until the week after my next chemo. I will enjoy my prodigious appetite while able to enjoy the New Mexico cuisine and not worry about fatigue or nausea cramping my style. That's it for where things stand with current symptoms.
I read a news release this last week about an article published in the International Journal of Cancer about survival improvement in people with stage IV lung cancer and bone metastases who are treated with Zometa. It was a small study and the patients were put on the Zometa for bone pain. Turns out it didn’t help the pain, but overall median survival in the group treated with Zometa was over 19 months, while survival for the chemo only (carbo/taxol) was just over a year.
That’s a big difference! In fact, I will reach the Zometa group’s overall median survival on Sunday. My oncologist started me on the Zometa months ago when I started to develop new bone lesions. As you know, I’m on pain meds to control the pain, but we’ve continued the Zometa to try to prevent more new bone lesions and to delay time to fracture of any that I have. At least a part of me feels like the Zometa is playing a significant part in keeping me alive and keeping me active. I feel like I live a charmed life regarding my oncologist and his educated guesses about how to treat me.
That's it for now. I'll be back in Connecticut Monday afternoon and pick up with enjoying the New England autumn after this little break of enchantment.
Lisa
Wednesday, October 14, 2009
What's Up With the Doc 79? - Down With Steroids
Today is the day after chemo (Gemzar) and every time is a new experience. Yesterday I had a rather sudden and dramatic increase in all my pain at about 7 pm, 4 hours after the chemo was started. Same thing happened after #2 (yesterday was #4), but it was 24 hours later rather than 4 hours later. None of that after #1 and #3. I'm guessing that that's because I got #1 and #3 with Zometa, the drug they give me to treat bone pain, prevent fracture and slow down the progression of the bone metastases. It's only given once every four weeks and I'm guessing that maybe it protects me from that post-chemo pain syndrome. We'll see. If no pain next time I'll be ready with quick draw pain meds after #6.
I talked to the doctor about my hip pain. I've pretty much decided to let it be for now. As long as I use my cane for any distance and stay off it as much as I can the pain is controllable with a minimal increase in my usual pain medication regimen. Right now I don't see any reason to clutter my life with scans and appointments to consider the possibility of additional radiation. I'll reconsider if the pain threatens to stop me from doing things I want to and would otherwise be doing.
Finally, we talked about the steroids - what they're intended to do and the side effects I'm experiencing. The weakness that makes it difficult for me to get up out of a chair is the most worrisome, although I'm not liking my fat face or fat me. We decided to very slowly try to decrease the dose to one that will lighten up on the side effects but still control the nausea and not let the bone pain get any worse. That's a 25% reduction per week, so I'll let you know how that goes.
Other than that, Emma is recovering from her experience with H1N1 flu and I fully approve of the way the university handled that situation - online reporting, automatic excused absences and test rescheduling, keep 'em out of the health center. Lindsay and maybe Jacob coming for at least part of the weekend. The Fantasticks is at the Long Wharf Theatre in New Haven and I think we'll go wallow in that with a nice meal thrown in for good measure.
I talked to the doctor about my hip pain. I've pretty much decided to let it be for now. As long as I use my cane for any distance and stay off it as much as I can the pain is controllable with a minimal increase in my usual pain medication regimen. Right now I don't see any reason to clutter my life with scans and appointments to consider the possibility of additional radiation. I'll reconsider if the pain threatens to stop me from doing things I want to and would otherwise be doing.
Finally, we talked about the steroids - what they're intended to do and the side effects I'm experiencing. The weakness that makes it difficult for me to get up out of a chair is the most worrisome, although I'm not liking my fat face or fat me. We decided to very slowly try to decrease the dose to one that will lighten up on the side effects but still control the nausea and not let the bone pain get any worse. That's a 25% reduction per week, so I'll let you know how that goes.
Other than that, Emma is recovering from her experience with H1N1 flu and I fully approve of the way the university handled that situation - online reporting, automatic excused absences and test rescheduling, keep 'em out of the health center. Lindsay and maybe Jacob coming for at least part of the weekend. The Fantasticks is at the Long Wharf Theatre in New Haven and I think we'll go wallow in that with a nice meal thrown in for good measure.
Saturday, October 10, 2009
What's Up With the Doc 78? - A Week of Ups and Arounds
It's been an interesting week, this last one. Robert, Lindsay and I drove to Hartford to pick up my mother Saturday evening in gray, drizzly gloom. We stayed up that way for dinner and by the time we left the restaurant were visited by a fantastic thunderstorm and deluge of rain. We had a great family weekend and Robert put together a meal on Sunday that had to rank as one of his all time best. Monday Lindsay and my mother and I had lunch in New Haven before dropping Lindsay off at the train to head back home.
Once the Sunday evening storms died down the weather had been everything from a tiny bit dreary to sparkling, but we woke to drenching rain on Wednesday to celebrate Robert's birthday. I worked during the morning and for reasons that will never be clear to me, my left hip selected that morning to suddenly, after five months of pain relief and no cane, become exquisitely painful. I didn't do anything, the onset wasn't associated with a specific action, but it is suddenly much worse. I came home to hit the recliner and the pain meds. My aunt and uncle came over from Long Island to help celebrate Robert's birthday, see my mom while she's here and see me before they head for Florida for the winter. By the time dinner rolled around I was feeling some better so we headed out for what turned out to be one of the very best seafood meals I can ever remember.
Thursday morning I looked in the mirror and realized that I've developed the "moon facies" associated with long-term steroid use. I've been on dexamethasone since the end of August when I was in the emergency department for nausea and now you can tell. Nothing bad or dangerous, I'm just not used to having a round face. I also called the oncologist about the hip pain. He sent me for plain x-rays but the radiologist couldn't even see the hip lesion, much less whether there'd been a fracture or any other change. The oncologist asked if I wanted a scan to help decide what to do, but I had so much pain just getting the plain films I told him I'd think about it over the weekend and we'd talk when I see him on Tuesday. As long as I use my cane and stay off the leg as much as possible I'm OK. I was already pretty limited in standing and walking time with the pain from the spinal mets, so I'm mulling whether I really want to do anything about this or not. When it first showed up last spring there was actually talk of surgery, but I'm not in any way a surgical candidate at this point so it's either stay off it and take meds or talk to radiation oncology to see what they might be able to do. So I'll mull over the weekend and we'll talk to the oncologist on Tuesday.
Other than that, Emma got hit with H1N1 influenza in Colorado. She was miserable and it was miserable for me not to be able to do anything for her, but she seems to have turned the corner and was able to go to a couple of classes yesterday. All other children are healthy (well, Isaac recovering from knee surgery) and busy.
Don't forget to support Team Sunnyside for the National Free to Breathe event in November and send quiet thoughts to my hip.
Lisa
Once the Sunday evening storms died down the weather had been everything from a tiny bit dreary to sparkling, but we woke to drenching rain on Wednesday to celebrate Robert's birthday. I worked during the morning and for reasons that will never be clear to me, my left hip selected that morning to suddenly, after five months of pain relief and no cane, become exquisitely painful. I didn't do anything, the onset wasn't associated with a specific action, but it is suddenly much worse. I came home to hit the recliner and the pain meds. My aunt and uncle came over from Long Island to help celebrate Robert's birthday, see my mom while she's here and see me before they head for Florida for the winter. By the time dinner rolled around I was feeling some better so we headed out for what turned out to be one of the very best seafood meals I can ever remember.
Thursday morning I looked in the mirror and realized that I've developed the "moon facies" associated with long-term steroid use. I've been on dexamethasone since the end of August when I was in the emergency department for nausea and now you can tell. Nothing bad or dangerous, I'm just not used to having a round face. I also called the oncologist about the hip pain. He sent me for plain x-rays but the radiologist couldn't even see the hip lesion, much less whether there'd been a fracture or any other change. The oncologist asked if I wanted a scan to help decide what to do, but I had so much pain just getting the plain films I told him I'd think about it over the weekend and we'd talk when I see him on Tuesday. As long as I use my cane and stay off the leg as much as possible I'm OK. I was already pretty limited in standing and walking time with the pain from the spinal mets, so I'm mulling whether I really want to do anything about this or not. When it first showed up last spring there was actually talk of surgery, but I'm not in any way a surgical candidate at this point so it's either stay off it and take meds or talk to radiation oncology to see what they might be able to do. So I'll mull over the weekend and we'll talk to the oncologist on Tuesday.
Other than that, Emma got hit with H1N1 influenza in Colorado. She was miserable and it was miserable for me not to be able to do anything for her, but she seems to have turned the corner and was able to go to a couple of classes yesterday. All other children are healthy (well, Isaac recovering from knee surgery) and busy.
Don't forget to support Team Sunnyside for the National Free to Breathe event in November and send quiet thoughts to my hip.
Lisa
Friday, October 2, 2009
What's Up With the Doc 77? - All Quiet on the Cancer Front
The big news of the week is better liver function tests! Whether due to Gemzar, steroids, or all your good thoughts, the two major liver transaminases are normal and near normal. My alkaline phosphatase is still more than twice normal but can come from a lot of things, most notably bone metastases, so I'm not counting it as a liver function test. Other than that, no new symptoms or problems. No new emergency trips anywhere. I went for Gemzar and Zometa on Tuesday and didn't even have the brief increased pain and fatigue I usually get the next day. So the plan for right now is to keep on keeping on with what we're doing. I'll get Gemzar in two weeks, Gemzar and Zometa in four and that's the next time we'll check liver function tests.
My mother arrives tomorrow for a visit and has apparently timed it perfectly to enjoy early fall in Connecticut. We've had a couple of crisp days and leaves are definitely turning. Before she gets here I'm attending a CME course at my hospital in case I have to relicense and recredential next summer.
All three Thomas daughters are in the throes of school applications (well, Emma's pretty much done with applications - now she's just waiting) so the times they are anticipatory. Isaac is recovering from knee surgery and, other than that, all seven of our children are healthy, working away at and enjoying school and happy.
This week you can keep sending steady as you go thoughts. I would be perfectly happy to become the most boring email/blog updater ever.
Lisa
My mother arrives tomorrow for a visit and has apparently timed it perfectly to enjoy early fall in Connecticut. We've had a couple of crisp days and leaves are definitely turning. Before she gets here I'm attending a CME course at my hospital in case I have to relicense and recredential next summer.
All three Thomas daughters are in the throes of school applications (well, Emma's pretty much done with applications - now she's just waiting) so the times they are anticipatory. Isaac is recovering from knee surgery and, other than that, all seven of our children are healthy, working away at and enjoying school and happy.
This week you can keep sending steady as you go thoughts. I would be perfectly happy to become the most boring email/blog updater ever.
Lisa
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