12-26-14
Wednesday 12/24
Despite having a needle inserted in my arm to allow extraction of enough blood to make room for saline, chemo, and steroid infusions, my posterior suffers most during the weekly regimen. I can stand a bit, but getting unhooked is the highlight of my day - getting out of the less than comfortable chair.
Thursday 12/25
Awakened early as usual with a slight steroid "up" heading into an enjoyable, napless, Christmas day. If memory serves, all 14 g/children, their parents, a husband, 3 significant others (2 missing because of conflicts) and 3 locales - should add to 29. Truly enjoyable to see all having a good time.
By 8 p.m. I was crashing. Made my way upstairs to the quiet floor, and had the longest uninterrupted sleep of recent times, maybe of ever - more than 6 hours.
Today 12/26
Notwithstanding the sleep, up and exhausted. Out and about for a couple of hours, back for lunch, brief nap, now this, and likely to have another nap.
On Monday I will drop off some blood for testing, and next Wednesday will see Dr. Abonour to hear the results, and to learn the next step in the treatment. I anticipate another three week regimen.
As ever, no difficult side effects other than fatigue and feet discomfort, and those have Mary Ann making certain I don't overdo which means I get pampered. Incidentally, she put on a great party here yesterday.
Late next week I will be back with the next steps.
Friday, December 26, 2014
Friday, December 19, 2014
Multiple Myeloma
12-19-14
Wednesday 12/17
30 minutes of chemo infusion, 30 minutes of steroid infusion, all the while with saline solution dripping along side - I read throughout. Well, almost all the time, for a few minutes while speaking with the pharmacist, they took enough blood to later report 37 tests were looking good - I was not aware they had taken the blood, apparently one gets oblivious of needles.
Home for a good nap, then dinner. No nausea, no pain, my "hotspot" was not hot, barely noticeable.
Thursday 12/18
Awakened early as usual, very energized, feeling good, no need for my usual early morning nap taken when normal folks are getting up. Mary Ann and I ran some errands and had lunch out. Back home and nap time, awakening two hours later not so energized. Around 5:00, crashed.- no energy. A bit of increased temp, so two tyelenol as suggested by Dr. Abonour, a light dinner, and was able to muddle about until 9:00, then off to bed.
Today 12/19
Awake at 1:30, exhausted, but unable to sleep, so early morning reading with coffee and pipe comfort. After reading the Star and breakfast, back to the couch, then dressed and here we are now.
Obvious to me that I had about 24 hours of up from the steroids, have been down now for more than 12 hours, and am hoping for "normal" fatigue to jump in soon. I intend to get out and about shortly, but no heavy lifting. Mary Ann having to feed the birds and take care of the trash, with Karen's help.
My third treatment is next Wednesday. Christmas Eve and Christmas Day may be a bit different for me this year. Unfortunately, much more difficult for Mary Ann even with my trying not to be a pain - I don't have pain but am a carrier.
I should be back here sometime next week. Whatever, I wish you a very great Christmas.
Wednesday 12/17
30 minutes of chemo infusion, 30 minutes of steroid infusion, all the while with saline solution dripping along side - I read throughout. Well, almost all the time, for a few minutes while speaking with the pharmacist, they took enough blood to later report 37 tests were looking good - I was not aware they had taken the blood, apparently one gets oblivious of needles.
Home for a good nap, then dinner. No nausea, no pain, my "hotspot" was not hot, barely noticeable.
Thursday 12/18
Awakened early as usual, very energized, feeling good, no need for my usual early morning nap taken when normal folks are getting up. Mary Ann and I ran some errands and had lunch out. Back home and nap time, awakening two hours later not so energized. Around 5:00, crashed.- no energy. A bit of increased temp, so two tyelenol as suggested by Dr. Abonour, a light dinner, and was able to muddle about until 9:00, then off to bed.
Today 12/19
Awake at 1:30, exhausted, but unable to sleep, so early morning reading with coffee and pipe comfort. After reading the Star and breakfast, back to the couch, then dressed and here we are now.
Obvious to me that I had about 24 hours of up from the steroids, have been down now for more than 12 hours, and am hoping for "normal" fatigue to jump in soon. I intend to get out and about shortly, but no heavy lifting. Mary Ann having to feed the birds and take care of the trash, with Karen's help.
My third treatment is next Wednesday. Christmas Eve and Christmas Day may be a bit different for me this year. Unfortunately, much more difficult for Mary Ann even with my trying not to be a pain - I don't have pain but am a carrier.
I should be back here sometime next week. Whatever, I wish you a very great Christmas.
Friday, December 12, 2014
Multiple Myeloma
12-12-14
I had intended to get to this yesterday (Thursday) after having started a new regimen on Wednesday, thinking that I would be able to report effects. The effects prevented me from getting here until now.
The regimen is a 30 minute infusion of chemo (Kyprolis) followed by a 30 minute infusion of steroid (Dexamethasone) neither of which were bothersome at the time. I was, though, more tired than usual and crawled into bed soon after 8pm.
Yesterday started as usual, awake very early with a "nap" about the time you normal folks are starting your day. In the afternoon as I thought about the blog, I began having temp increases. Since such is a warning sign, half-hour readings continued to rise and by evening I reached the trigger for action: 100.4. Mary Ann spoke with Dr. Abonour and he suggested Tylenol every two hours to see if the temp would come down to avoid an ER visit. That worked. Temp is now normal.
Today, however, I am exhausted, on the couch in my cave most of the time. I continue to be aware of the "hotspot" on my right, rearward, rib, but no severe pain as I have reported earlier. No hair loss. No nausea. No weight loss. I hope to continue avoiding the 30+ side effects noted for the Kyprolis.
I have two more Wednesday infusions, then an analysis, but likely a Wednesday off and then another three, proceeding on that schedule for who knows how long. Neither does anyone know if the effects these two days following the first regimen are likely to repeat, There is much wait and see in all this.
So, if nothing remarkable happens in the interim, I will get back here next week with an update.
Enjoy the season.
I had intended to get to this yesterday (Thursday) after having started a new regimen on Wednesday, thinking that I would be able to report effects. The effects prevented me from getting here until now.
The regimen is a 30 minute infusion of chemo (Kyprolis) followed by a 30 minute infusion of steroid (Dexamethasone) neither of which were bothersome at the time. I was, though, more tired than usual and crawled into bed soon after 8pm.
Yesterday started as usual, awake very early with a "nap" about the time you normal folks are starting your day. In the afternoon as I thought about the blog, I began having temp increases. Since such is a warning sign, half-hour readings continued to rise and by evening I reached the trigger for action: 100.4. Mary Ann spoke with Dr. Abonour and he suggested Tylenol every two hours to see if the temp would come down to avoid an ER visit. That worked. Temp is now normal.
Today, however, I am exhausted, on the couch in my cave most of the time. I continue to be aware of the "hotspot" on my right, rearward, rib, but no severe pain as I have reported earlier. No hair loss. No nausea. No weight loss. I hope to continue avoiding the 30+ side effects noted for the Kyprolis.
I have two more Wednesday infusions, then an analysis, but likely a Wednesday off and then another three, proceeding on that schedule for who knows how long. Neither does anyone know if the effects these two days following the first regimen are likely to repeat, There is much wait and see in all this.
So, if nothing remarkable happens in the interim, I will get back here next week with an update.
Enjoy the season.
Thursday, December 4, 2014
MM
12-4-14
For my quick read friends, this is an interim report: MM has returned with a vengeance, I don't have the treatment plan but should in a few days and will blog again. Now, the wordy version.
Last Friday following the bad news from Wednesday, I reached high above my head with my right arm and felt a sharp pain in my right side. Had no further indication until I arose from my seat in the movie later that evening and could barely walk - pain in side radiating throughout. Hit the couch at home with some relief, and did get some sleep Friday night.
I did not move around much on Saturday and Sunday and the severe pain of Friday evening did not recur. On Monday had the PET scan at Simon, had lunch out with MA, and did not move around much the rest of the day - still not severe pain.
Tuesday, the most painful day ever. Finally spoke with Dr. Abonour late that afternoon and he scheduled me in early Wednesday morning. Pain less severe but persisting. He immediately said I had irritated a "hot spot" which showed on the PET scan along with other spots around my body. He said he would schedule the treatment plan I mentioned in my last post - my response, I have done what he advised until then, so no reason to change.
In the interim, however, he sent me next door to the lab for a 60 minute steroid infusion, to which a nice nurse added a bit of pain killer. MA and I left for lunch - I was much relieved and ready for Kona Jacks.
Back to the couch at home, lying on a heating pad as I had previous days, napping frequently. One of my concerns was my reaction to steroids during my prior treatment plan - up for a day or so, next way down for two or three.
Today, not much noticeable up from yesterday, not much down today. We are hoping that the steroid infusion will not result in the up and down reactions.
Concerning the "spots" Dr. Abonour's nurse, with a bit of hesitation, said they were no more severe than when all this started. That, plus all the other positives gives us some hope for the future.
I will blog again when I get the treatment plan and understand it a bit better. I expect that to be sometime next week. I don't claim to look good but still don't look like I have cancer, whatever that means.
For my quick read friends, this is an interim report: MM has returned with a vengeance, I don't have the treatment plan but should in a few days and will blog again. Now, the wordy version.
Last Friday following the bad news from Wednesday, I reached high above my head with my right arm and felt a sharp pain in my right side. Had no further indication until I arose from my seat in the movie later that evening and could barely walk - pain in side radiating throughout. Hit the couch at home with some relief, and did get some sleep Friday night.
I did not move around much on Saturday and Sunday and the severe pain of Friday evening did not recur. On Monday had the PET scan at Simon, had lunch out with MA, and did not move around much the rest of the day - still not severe pain.
Tuesday, the most painful day ever. Finally spoke with Dr. Abonour late that afternoon and he scheduled me in early Wednesday morning. Pain less severe but persisting. He immediately said I had irritated a "hot spot" which showed on the PET scan along with other spots around my body. He said he would schedule the treatment plan I mentioned in my last post - my response, I have done what he advised until then, so no reason to change.
In the interim, however, he sent me next door to the lab for a 60 minute steroid infusion, to which a nice nurse added a bit of pain killer. MA and I left for lunch - I was much relieved and ready for Kona Jacks.
Back to the couch at home, lying on a heating pad as I had previous days, napping frequently. One of my concerns was my reaction to steroids during my prior treatment plan - up for a day or so, next way down for two or three.
Today, not much noticeable up from yesterday, not much down today. We are hoping that the steroid infusion will not result in the up and down reactions.
Concerning the "spots" Dr. Abonour's nurse, with a bit of hesitation, said they were no more severe than when all this started. That, plus all the other positives gives us some hope for the future.
I will blog again when I get the treatment plan and understand it a bit better. I expect that to be sometime next week. I don't claim to look good but still don't look like I have cancer, whatever that means.
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