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Progress and the lack there of
:( Well the roller coaster ride, each of us unfortunately is too familiar with, continues. I last reported my August 5th CT showed some promise to the treatment. No new cancer and the existing nodes had not grown since June. Well the good news was short lived; a fever and a variety of new pains has had me moving from one test to the next and struggling to hang on to hope.
The pain in my left shin and calf remains unexplained and restricts my mobility. There is a superficial clot in my right calf that I’m taking two 325 mg aspirin a day for. Percocet (5/325) provided some relief and I was finally able to relax enough to regroup mentally. So, trying to stay optimistic, I began looking forward to things, doing exercises to regain the strength lost to 4 weeks of inactivity and actually not thinking about being sick 24/7.
A VQ scan didn’t explain my rapid pulse although the report reads (results were “indeterminate for pulmonary embolus.”). The doctor would have liked to have done a spiral CT with contrast but the risk associated with my marginal creatinine ruled that out. There was a question of hypertrophic pulmonary osteopathy, which is associated with lower leg pain but the bone scan failed to demonstrate findings related to this disease. The bone scan did show abnormalities in the pelvic bone, which were not observed on the previous CT scans. Oddly (or perhaps not) a few days before the bone scan (which was my first) I had a new pain, this time in my left hip. I dismissed it as arthritis and the odd way I’ve been walking because of the pain in my legs. But metastases are the more likely explanation. I’m beginning to think hope isn’t all its cracked up to be. Sometimes it only seems to set me up for more pain.
More tests to follow. More decisions to be made. Since Dec 06 when I began this ride my mental strength has held steady, however the pain I’ve been in for the last month has worn that thin. Thank God for Xanax when panic replaces reality. But what is a proportionate emotional reaction to a reality that truly sucks? I hate that this disease is shrinking my world; no golf, no neighborhood walks, no dinners out or helping my working wife with chores and two years later I still miss my job (I was the superintendent of a small urban public school district).
I search for the strength to not give in. A short trip to Barnes and Noble to book shop for my granddaughter helped, but right know I think I’m losing, and anyone that knows me knows how much I hate losing. So with the help of family and friends, the opportunity to vent on this site, Percocet and Xanax I’ll continue to move forward, albeit slowly and not without adversity.
I know my struggles with this disease are not unique. Each of you at this site are on a similar ride and are in my prayers for the strength, courage and faith to manage the rode ahead.
Dan
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10 Replies
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thanks, Dan….my husband is out of the hospital, finally, and we can start to address the pain again.
Stephany in Iowa
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Stephany,
Yesterday I increased the strength of the Fentanyl patch from 25 mcg/hour to 50 mcg/hour. It made a big difference. I was not on strong pain med before that. With the higher dose patch I still needed a Percocet but only one, 5/325 for the whole day. Before the patch I was taking one Percocet every 5 or 6 hours. The pain meds are constipating but my doctor said to take 30 ml of milk of magnesia and it worked. As is so often the case, solve one problem create a new one. True the long term effects of all these meds is a question but for now I’m enjoying the relief.
Today I’ll have another CT scan to take a closer look at the spot on my hip they saw in the bone scan. If the cancer is in the bone we’ll probably stop chemo and move to radiation.
Dan
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I have been on pain meds for 5 months during my wound problem. My wound Dr recommended taking 2 senocets (sic), the constipation herbal pill, everytime you take a pain pill. It seems to work for both hydrocodone and percocette. Frankly, I did it a few times, now I just take one or two a day, but if you need to, it seems to Get’r done!
BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008
Stephany, when the Dr. started Dick on Fentanyl they started at 12.5 mcg. I think that is the lowest dose. Dick had already been taking morphine and oxycodone.
What is Doran taking now for pain? Is he seeing a pain specialist? I am really glad we found another one after the first one was on medical leave for so long.
Sorry I took so long to respond I think I must have overlooked this thread. Anyway yes Dick is on the Fentanyl patch which helps a lot but he still needs to take oxycodone for breakthrough pain. It is heavy duty pain medication and you have to use it as instructed. He is now at 100mcg as of last Thursday but he has reduced the oxycodone. Another issue is the issue all narcotics give a person. Constipation. You have to stay ahead of it. Dick is using a combination of stool softeners and senna. Hope you get Doran home soon. Julie
Volunteer Coordinator
ABLSC
Just wondering how the patch is working, Dan? I did some looking on line, and the sites said it was only for those who had been on opiates at a higher level, so I was thinking it might not work for my husband, but you weren’t on really high levels before the patch, right?
Let us know how you’re feeling!
Stephany in Iowa
My regularly scheduled CT scan has been moved up two weeks to Wednesday, maybe it it will answer more questions than raises. In the meantime I started a Fentanyl patch (25mg/hr) for pain. This is the lowest dose. You wear the patch for 72 hours before replacing it. What I didn’t know was that it takes up 24 hours to kick in (supposedly just the first time). So after a rough start I learned I should keep taking the percocet until the patch starts working. After 48 hours there is a marginal difference. I was taking percocet every 5 hours now its every 7. Later today the doctor will decide if I should increase the patch strength. The goal is to have a consisent level of pain management.
I’ve heard of the patches….I think maybe Julie’s husband is on one. Let us know what you find out.
Stephany in Iowa
Stephany
Thanks,I have some good doctors, one in NYC and the other locally. I’m seeing the NYC doctor tomorrow to discuss pain management. I’ll share the meds you mentioned. His PA spoke to me on the phone today about a patch that would be less constipating and perhaps better at maintining an even keel.
Dan
Dan, my sister is a nurse practictioner, and she told us about Klonopin, which is longer acting version of Xanax. Doran went on it when he got his mets news, and it made a difference. It stops that cycle of up, OK, then down, then wait for the next Xanax to kick in.
Also, Tramadol is an antianxiety drug he took, which decreased his pain by treating the anxiety component of the pain. He used it with percoset/endocent. He’s trying to cut down on the endocet, because it makes him drowsy.
Fighting the pain is SO draining, isn’t it? Do you have a good pain doc? Or a local doc who would work with you? Can you do any stretches, etc?
And the proportional emotional response to a situation that really sucks is not something that anyone who isn’t in your shoes can predict, is it? Some days Doran feels like giving in, and some days he feels like he’s gaining ground.
Each time he has a setback, we learn about one more thing we should have considered, and it’s a hard lesson to learn each time: fast pulse and breathing means an infection. Infection that is not caught in time leads to the hospital. Infection means antibiotic, which can lead to a yeast infection.
Fatigue, etc. can lead to lightheadedness, which can lead to fainting, which can lead to falls, which equal a broken jaw.
At least it’s not snowing and 10 degrees below zero…..yet.
Doran misses his patients, and his staff. He wants to be useful, but he hurts.
Keep posting. I’ll tell him to read your posts.
Stephany in Iowa
Dan,
I am glad you find this site useful. Know that you are in our thoughts and prayers. It is hard road you are traveling and any help we can give on the way is yours.Webs
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