11-13-15
Met with Dr. Abonour on Wednesday to learn that the newest regimen did not favorably affect the bad blood test - to the contrary, the bad got badder. Consequently, I am beginning another regimen, much like my first one from more than two years back, with the hope to get the bad under control by the end of the year when promising new drugs should be available.
The amusing aspect of that first regimen, which those of you who have labored along with me since the blog started will remember, was the commitment and reporting concerning unprotected sex. Again now, I have agreed to proper behavior by signing a three page series of commitments. One statement of truth would have been enough to cover all three pages.
I have no physical awareness of "the bad got badder", possibly because I have the other matters mentioned below with which to deal, but more likely because the bad simply is not patent. Some of the other matters are.
Just over two weeks ago I ended five days of radiation to clear (we hope) the lesion where my hip bone connects to my thigh bone. The Docs say we should know in 6,8, or 10 weeks if the zapping did the job. So, I continue to get about with a cane and have a self-rating pain scale of 0-10, with 0 meaning none and 10 being a faint. I have many zero times, no faints to date. Despite that 6,8,10 wait, I believe I have some lessening of pain in walking, maybe a good sign.
Probably unrelated to the cancer, but more troublesome just now, I have considerable swelling in my feet and ankles, so much that the skin has broken in two spots on my right leg. Diuretics have not helped. I am going to the IU Wound center next week to see if they can help.
I continue to believe whatever will be, will be, so I do what Dr. Abonour and the other doctors say to do, and proceed.
My greatest frustration, which I have had for years and which is unrelated to mortality, is knowing I cannot get read all I have to read. My desktop is full, my iPad has books unopened, and I keep adding others. I am a mile wide and an inch deep in my reading - there ought to be a subject in which I have no interest. I suppose that is better than having nothing of interest - then I might worry about having cancer.
I see Dr. Abonour on December 16 and will be back here soon thereafter. If in the interim there are remarkable results on the other problems, I will report them.
Have a great Thanksgiving.
Friday, November 13, 2015
Friday, October 30, 2015
Multiple Myeloma
10-30-15
I said in my last blog I would see Dr. Abonour on November 4 and would report soon thereafter - not so, I see him on November 11 to learn if the latest regimen is working, and I will report soon thereafter.
Regarding the radiation treatments: had number five last Wednesday and now the wait. In essence, I will determine if the treatments were successful - if I no longer have the pain in my right leg. In the interim, I am to be very careful with the leg, if I do something that hurts, I don't do it. The hope is the cancer cells will be gone and the bone will regenerate.
We were surprised to see the area of zapping. They did not pinpoint the lesion, they zapped from my middle to my exterior, said they hoped to get any cancer cells in the area. That makes sense to me, and I just lay on the table and let them have at it. The only discomfort was in my tailbone - those table are not very comfortable.
I have not had pain relief in these two days since the last treatment. Not unusual, they tell me weeks may be required for full relief. They repeat: "behave, with limited activity" so I will.
I will be back soon after 11/11.
I said in my last blog I would see Dr. Abonour on November 4 and would report soon thereafter - not so, I see him on November 11 to learn if the latest regimen is working, and I will report soon thereafter.
Regarding the radiation treatments: had number five last Wednesday and now the wait. In essence, I will determine if the treatments were successful - if I no longer have the pain in my right leg. In the interim, I am to be very careful with the leg, if I do something that hurts, I don't do it. The hope is the cancer cells will be gone and the bone will regenerate.
We were surprised to see the area of zapping. They did not pinpoint the lesion, they zapped from my middle to my exterior, said they hoped to get any cancer cells in the area. That makes sense to me, and I just lay on the table and let them have at it. The only discomfort was in my tailbone - those table are not very comfortable.
I have not had pain relief in these two days since the last treatment. Not unusual, they tell me weeks may be required for full relief. They repeat: "behave, with limited activity" so I will.
I will be back soon after 11/11.
Saturday, October 17, 2015
Multiple Myeloma
10-17-15
I just read the last post, had not remembered I said I would get back in a week, not even certain why I said it. I will try to get current.
Re the cancer, the switch did not work. That bad blood test is out of sight, above 1,000 with 9 being the suggested high. So, this past Wednesday I got back on a three week on, one week off regimen, with a combination of chemos which has worked for others. I will see Dr. Abonour on 11-4 to learn if this new regimen works better and will report here.
Re the lesion on my ilium, which I call a hole in my hip bone, I am to begin radiation therapy on 10-22. They will zap me 4, 5, or 10, times - not sure which. The intent is to destroy the lesion (cancer) to allow the bone to regenerate. I will have to be careful walking or whatever for 10 weeks or so but then possibly will be able to swing a club again. I put too much emphasis on the golf nonsense, haven't wanted to swing a club, but it is a goal I suppose - better than jogging which I have never wanted to do.
I had a scan yesterday for them to have a "picture" to use for the zapping. Unfortunately, I twisted improperly (my fault) getting on the table and incurred a strong 9 pain level in my upper right leg, remnants of which I feel today. In addition, I started two new drugs last evening to reduce extra fluid in my body (edema) primarily in my ankles - drugs my body is not accepting well. The combination of those two items has me house bound, fatigued, and sleepy - useless, in other words. About the only exercise I get right now is jumping to conclusions.
I do try, however, to stay out of Mary Ann's way so she can get the deck painted, the birds fed, the new plantings watered, the laundry done, and food ready upon command. She is, you know, younger than I.
For those of you who sneak a look here from time-to-time, I will get back with the radiation schedule sometime next week. I might even relate what zapping is like - I expect it will be much preparation for a quick hit.
I still enjoy ice cream every day, often more than once, and get three or four hours of reading before the normal breakfast hour.
I just read the last post, had not remembered I said I would get back in a week, not even certain why I said it. I will try to get current.
Re the cancer, the switch did not work. That bad blood test is out of sight, above 1,000 with 9 being the suggested high. So, this past Wednesday I got back on a three week on, one week off regimen, with a combination of chemos which has worked for others. I will see Dr. Abonour on 11-4 to learn if this new regimen works better and will report here.
Re the lesion on my ilium, which I call a hole in my hip bone, I am to begin radiation therapy on 10-22. They will zap me 4, 5, or 10, times - not sure which. The intent is to destroy the lesion (cancer) to allow the bone to regenerate. I will have to be careful walking or whatever for 10 weeks or so but then possibly will be able to swing a club again. I put too much emphasis on the golf nonsense, haven't wanted to swing a club, but it is a goal I suppose - better than jogging which I have never wanted to do.
I had a scan yesterday for them to have a "picture" to use for the zapping. Unfortunately, I twisted improperly (my fault) getting on the table and incurred a strong 9 pain level in my upper right leg, remnants of which I feel today. In addition, I started two new drugs last evening to reduce extra fluid in my body (edema) primarily in my ankles - drugs my body is not accepting well. The combination of those two items has me house bound, fatigued, and sleepy - useless, in other words. About the only exercise I get right now is jumping to conclusions.
I do try, however, to stay out of Mary Ann's way so she can get the deck painted, the birds fed, the new plantings watered, the laundry done, and food ready upon command. She is, you know, younger than I.
For those of you who sneak a look here from time-to-time, I will get back with the radiation schedule sometime next week. I might even relate what zapping is like - I expect it will be much preparation for a quick hit.
I still enjoy ice cream every day, often more than once, and get three or four hours of reading before the normal breakfast hour.
Wednesday, September 9, 2015
Multiple Myeloma
9-10-15
Saw Dr. Abonour yesterday, learned that my chemo treatments are not working. The bad blood test was at its baddest, and I have a myelomatous deposit where the thigh bone meets the hip bone (does that ring a bell?) the seriousness of which is yet to be determined by consult with an orthopedic surgeon. Starting next Wednesday (9-16) I will be infused with a different, stronger, chemo, two weeks on, two weeks off, and will see Dr. Abonour again on October 14. Paraphrasing a famous rabbi, that's the story, what follows is commentary.
Many days ago I began having pain in my right leg. It was mainly in the groin and the nurses in the infusion room suggested I see my internist to determine if I had a hernia. I did, he decided no hernia, recommended advil or aleve, both of which I tried (not at the same time) to no avail. The pain continued while walking and spread throughout the leg.
On Monday 8-31 as I was walking, painfully, out of the building where I get infusions and where I drop off, better said, drip off, blood for the studies, one of the infusion nurses (more on them later) stopped me, said I needed a scan. She contacted the oncology nurse and I had a Pet scan that evening - very quick scheduling.
About the nurses in the infusion center. They are a remarkable group, caring, competent, upbeat, I really enjoy and respect them - almost worth having MM just to flirt with them on a near weekly basis. As noted in the previous paragraph, if they think more than infusion is needed, they say so, and even see to it.
On Tuesday 9-1 I had to walk about 50 yards in and out of a building and the pain was severe, had to stop two or three times each way - little pain standing or sitting.
On Wednesday as I was being infused, Dr. Abonour walked to my chair (I was not scheduled to see him) to tell me the Pet scan revealed the lesion (deposit) mentioned in the first paragraph - that my pain problem was caused by my cancer. He did not mention a change in chemo but did say he was consulting with an orthopedic surgeon. He suggested crutches or a cane until I saw him on 9-9.
I am not competent with crutches (probably because I don't want to be) but I am learning to use the cane which I began as soon as I got home. Learning because I have no severe pain while doing so. I know it is the cane because I do have pain when I try to move without it and when I have a twinge on stepping improperly with it. I may be stuck with the cane forever - comfort trumps vanity.
I don't know what the consequences will be from the new chemo. I should not lose the mop, I may suffer nausea. Fatigue is a greater problem and my feet problems continue. I am useless for yard work, for any strenuous activity. Mostly, I am comfortable.
I will get back here late next week. In the meantime, I still believe, que sera, sera, and I don't look for my obit in the paper.
Peace be with you.
Saw Dr. Abonour yesterday, learned that my chemo treatments are not working. The bad blood test was at its baddest, and I have a myelomatous deposit where the thigh bone meets the hip bone (does that ring a bell?) the seriousness of which is yet to be determined by consult with an orthopedic surgeon. Starting next Wednesday (9-16) I will be infused with a different, stronger, chemo, two weeks on, two weeks off, and will see Dr. Abonour again on October 14. Paraphrasing a famous rabbi, that's the story, what follows is commentary.
Many days ago I began having pain in my right leg. It was mainly in the groin and the nurses in the infusion room suggested I see my internist to determine if I had a hernia. I did, he decided no hernia, recommended advil or aleve, both of which I tried (not at the same time) to no avail. The pain continued while walking and spread throughout the leg.
On Monday 8-31 as I was walking, painfully, out of the building where I get infusions and where I drop off, better said, drip off, blood for the studies, one of the infusion nurses (more on them later) stopped me, said I needed a scan. She contacted the oncology nurse and I had a Pet scan that evening - very quick scheduling.
About the nurses in the infusion center. They are a remarkable group, caring, competent, upbeat, I really enjoy and respect them - almost worth having MM just to flirt with them on a near weekly basis. As noted in the previous paragraph, if they think more than infusion is needed, they say so, and even see to it.
On Tuesday 9-1 I had to walk about 50 yards in and out of a building and the pain was severe, had to stop two or three times each way - little pain standing or sitting.
On Wednesday as I was being infused, Dr. Abonour walked to my chair (I was not scheduled to see him) to tell me the Pet scan revealed the lesion (deposit) mentioned in the first paragraph - that my pain problem was caused by my cancer. He did not mention a change in chemo but did say he was consulting with an orthopedic surgeon. He suggested crutches or a cane until I saw him on 9-9.
I am not competent with crutches (probably because I don't want to be) but I am learning to use the cane which I began as soon as I got home. Learning because I have no severe pain while doing so. I know it is the cane because I do have pain when I try to move without it and when I have a twinge on stepping improperly with it. I may be stuck with the cane forever - comfort trumps vanity.
I don't know what the consequences will be from the new chemo. I should not lose the mop, I may suffer nausea. Fatigue is a greater problem and my feet problems continue. I am useless for yard work, for any strenuous activity. Mostly, I am comfortable.
I will get back here late next week. In the meantime, I still believe, que sera, sera, and I don't look for my obit in the paper.
Peace be with you.
Friday, August 14, 2015
Multiple Myeloma
8-14-15
Again, not much to report. The bad readings continue to get a bit worse, as does my fatigue.
Dr. Abonour is on vacation so I did not see him Wednesday. Another oncologist read my labs, spoke with Dr. Abonour, and together they decided to continue me on the regimen of three weeks on, one week off. I will see Dr. Abonour on Wednesday, September 9. I will get back here soon thereafter.
Dr. Abonour has suggested I might, despite my age, be a candidate for stem cell treatment. I seldom research possibilities, dealing with reality is enough, but my caring sister is a bit more inquisitive (I probably would be about her condition) so she went to the internet to see what stem cell treatment might entail and told me it didn't sound pleasant. I checked and before I could sign off realized that it is not pleasant, quite the contrary. I hope I (we) don't have to decide if I should have stem cell treatment - I suspect we would have to have a family conference.
I will be back in September. In the meantime, live well.
Again, not much to report. The bad readings continue to get a bit worse, as does my fatigue.
Dr. Abonour is on vacation so I did not see him Wednesday. Another oncologist read my labs, spoke with Dr. Abonour, and together they decided to continue me on the regimen of three weeks on, one week off. I will see Dr. Abonour on Wednesday, September 9. I will get back here soon thereafter.
Dr. Abonour has suggested I might, despite my age, be a candidate for stem cell treatment. I seldom research possibilities, dealing with reality is enough, but my caring sister is a bit more inquisitive (I probably would be about her condition) so she went to the internet to see what stem cell treatment might entail and told me it didn't sound pleasant. I checked and before I could sign off realized that it is not pleasant, quite the contrary. I hope I (we) don't have to decide if I should have stem cell treatment - I suspect we would have to have a family conference.
I will be back in September. In the meantime, live well.
Thursday, July 16, 2015
Multiple Myeloma
7-16-15
Nearly forgot to report here - not much of interest to relate. The bad blood test got a bit worse, but at a much reduced rate. So, Dr. Abonour decided no need to change the regimen of three weeks on, one week off, to see if there is a decrease when I next report on or about August 15.
This disease is confusing. I had four really blah days prior to last Tuesday. That afternoon I struggled to nap, swallowed an oxycodone, slept for about 90 minutes and awakened feeling better than I have for months. Tuesday night I slept for nearly eight hours - neither Mary Ann nor I can remember my having slept that long. Consequently, I saw Dr. Abonour feeling very well, nothing to complain about.
Last night, struggled to get to sleep, unusual, and when I did, slept for just over three hours. I did nothing different from Tuesday, same activity, much the same food, same bed, different result. The point is, every day is a surprise, with my having no control over the result.
Mary Ann and I are about to leave for Wabash to join some of my remaining classmates to celebrate our 65th graduation from high school. We are now at the age when you quit lying and start bragging about it.
Hope all is well with you. I continue to believe, despite having cancer, that I am doing very well.
Nearly forgot to report here - not much of interest to relate. The bad blood test got a bit worse, but at a much reduced rate. So, Dr. Abonour decided no need to change the regimen of three weeks on, one week off, to see if there is a decrease when I next report on or about August 15.
This disease is confusing. I had four really blah days prior to last Tuesday. That afternoon I struggled to nap, swallowed an oxycodone, slept for about 90 minutes and awakened feeling better than I have for months. Tuesday night I slept for nearly eight hours - neither Mary Ann nor I can remember my having slept that long. Consequently, I saw Dr. Abonour feeling very well, nothing to complain about.
Last night, struggled to get to sleep, unusual, and when I did, slept for just over three hours. I did nothing different from Tuesday, same activity, much the same food, same bed, different result. The point is, every day is a surprise, with my having no control over the result.
Mary Ann and I are about to leave for Wabash to join some of my remaining classmates to celebrate our 65th graduation from high school. We are now at the age when you quit lying and start bragging about it.
Hope all is well with you. I continue to believe, despite having cancer, that I am doing very well.
Thursday, June 25, 2015
Multiple Myeloma
6-25-15
The short version: the bad blood test got worse the past month resulting in my having to return to the three weeks on, one week off, schedule of infusions, the first was yesterday. Not a surprise, I have been more tired recently, some of which even Dr. Abonour agrees is due to the increasing poor reading. I will see him again on July 15, and will be back here then. On to the details, and a few words about Mary Ann's surgery.
The acceptable range for the Kappa/Lambda test is approximately 5-9. Late in 2014, my reading spiked at 600+. I began the infusions of chemo and steroids with the following reports from Dr. Abonour:
1-7-15 stable and not worsening, continue current treatment;
2-9-15 in complete remission, continue current treatment;
3-9-15 in complete remission, change to two on from three on,
4-9-15 near complete remission, continue current treatment;
5-5-15 near complete remission, continue current treatment;
6-1-15 stable and not worsening, continue current treatment.
Then yesterday the reading was 200+, thus the return to three on, one off, hoping to return to remission. We know MM is not curable but is treatable - we will see if the return works. The change to two on, two off, was called for because the infusions are so expensive and chemo/steroids need to be limited if at all possible. We will know in July if the return is working.
As I have mentioned many times, my only symptoms are fatigue and troublesome feet, neither of which are apparent to an occasional viewer (Mary Ann does say she sees fatigue levels) but she has to look at me late in the day. I can best define how tired I have been recently by noting that my golf clubs are in the garage and I have had no interest in using them even for a few holes.
I do not sleep well. Yesterday Dr. Abonour told me to take one oxycodone before bed time which I did last night and I slept well for 5+ hours. Despite the horror stories about oxy, I will continue taking one at night to see if I have good sleep results.
About Mary Ann. She had foot surgery three weeks ago. But for short trips to the bathroom, she was bed ridden with a heavy boot. She was using a knee scooter. She fell three times, the last hitting her head on the tile floor. Part of the reason she fell was a prescribed drug reaction causing her to be more than a little ditzy. The last time also resulted in our getting her to ER for evaluation, including x/rays of her skull. Every test was negative, so she was released with the admonition to not take the pain pills. We got her back to the surgeon and he prescribed a different pill, plus she has hydrocodone, which she could take - much better results.
Now she has a walking shoe and is able to get about the house a bit. She, too, is very tired, and has no appetite. She believes, and I agree, she needs to get the drugs out of her system to return to normal. I hope she doesn't waste away in the meantime.
So I have been a care giver for a few weeks. I have it down pat: I help just enough to get her to the point of wanting me to get back in my cave.
Actually, Karen who lives with us has been great, not only with Mary Ann but with food and laundry handing. Without her here I could not have taken care of Mary Ann.
We have had a few interesting weeks - we are hoping we all get better now.
The short version: the bad blood test got worse the past month resulting in my having to return to the three weeks on, one week off, schedule of infusions, the first was yesterday. Not a surprise, I have been more tired recently, some of which even Dr. Abonour agrees is due to the increasing poor reading. I will see him again on July 15, and will be back here then. On to the details, and a few words about Mary Ann's surgery.
The acceptable range for the Kappa/Lambda test is approximately 5-9. Late in 2014, my reading spiked at 600+. I began the infusions of chemo and steroids with the following reports from Dr. Abonour:
1-7-15 stable and not worsening, continue current treatment;
2-9-15 in complete remission, continue current treatment;
3-9-15 in complete remission, change to two on from three on,
4-9-15 near complete remission, continue current treatment;
5-5-15 near complete remission, continue current treatment;
6-1-15 stable and not worsening, continue current treatment.
Then yesterday the reading was 200+, thus the return to three on, one off, hoping to return to remission. We know MM is not curable but is treatable - we will see if the return works. The change to two on, two off, was called for because the infusions are so expensive and chemo/steroids need to be limited if at all possible. We will know in July if the return is working.
As I have mentioned many times, my only symptoms are fatigue and troublesome feet, neither of which are apparent to an occasional viewer (Mary Ann does say she sees fatigue levels) but she has to look at me late in the day. I can best define how tired I have been recently by noting that my golf clubs are in the garage and I have had no interest in using them even for a few holes.
I do not sleep well. Yesterday Dr. Abonour told me to take one oxycodone before bed time which I did last night and I slept well for 5+ hours. Despite the horror stories about oxy, I will continue taking one at night to see if I have good sleep results.
About Mary Ann. She had foot surgery three weeks ago. But for short trips to the bathroom, she was bed ridden with a heavy boot. She was using a knee scooter. She fell three times, the last hitting her head on the tile floor. Part of the reason she fell was a prescribed drug reaction causing her to be more than a little ditzy. The last time also resulted in our getting her to ER for evaluation, including x/rays of her skull. Every test was negative, so she was released with the admonition to not take the pain pills. We got her back to the surgeon and he prescribed a different pill, plus she has hydrocodone, which she could take - much better results.
Now she has a walking shoe and is able to get about the house a bit. She, too, is very tired, and has no appetite. She believes, and I agree, she needs to get the drugs out of her system to return to normal. I hope she doesn't waste away in the meantime.
So I have been a care giver for a few weeks. I have it down pat: I help just enough to get her to the point of wanting me to get back in my cave.
Actually, Karen who lives with us has been great, not only with Mary Ann but with food and laundry handing. Without her here I could not have taken care of Mary Ann.
We have had a few interesting weeks - we are hoping we all get better now.
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