Multiple Myeloma

10-27-13

Yesterday and today, days 3 & 4 of my resumption of meds, about the same, no improvement with feet and fatigue.  That is as expected.  After I see the doctor in November, I may return to my neurologist re my feet, and the testosterone boost from shots will take some time to help with fatigue.  I continue to nap well and often.  Resuming the meds has a negative effect on my digestive system, again, not unexpected. 

At our Friday coffee klatch, I was pleased to learn that my shirts are not the only ones with shrinking button holes and expanding buttons.  That we are in the same age group may have some effect on the buttoning of shirts.

I am trying to avoid having my sole purpose in life to serve as a warning to others.

Multiple Myeloma

10-26-13

Started my new regimen at dinner last evening, two weeks on, then two weeks off, less severe revlimid, no steroids. 

Awoke this morning feeling good, made the Friday coffee klatch, began feeling a bit light headed, came home and was asleep by 10.  Since then, felt lousy until about an hour ago, now much better, and we are going out for dinner.

I did have some problems getting to this page, fortunately hooked to my guru, Andy Dietz, and here I am.  If you ever need help with your smart phone or your PC, I can give you Andy's number, he is very helpful and reasonable.  email me at kbwilson@comcast.net.

I am hoping the difficulty today is not going to recur every day, that it resulted from getting back on the drugs - time will tell.  I try to keep my words soft and sweet in case I later have to eat them.

Multiple Myeloma

10-24-13

Last Monday, 10-21, I received a shot to begin the restoration of my very low testosterone due to MM, the treatment of MM, and to my advanced age.  The intent and my hope is that monthly shots will reduce my extreme fatigue, not so much, however, to allow vacuuming.

This evening I will begin a new treatment regimen of two weeks on, two weeks off.  I will not be taking the steroid hit, and the revlimid dosage will be 40% less.  Those changes may also help with the fatigue.

My feet problem continues.

After this two week regimen I will meet with Dr. Abonour.  You may note that I have changed Doctors which could indicate dissatisfaction with Dr. Milton.  Not so.

Mary Ann and I are very pleased with Dr. Milton, with Tammy Linback, Nursing Manager, and the others at HOI.  We should be, they got me to remission.  We would recommend them without reservation.

We changed to Dr. Abonour, who devotes 100% of his time to MM, and to get into the IU Health System.  We believe that is best for us at this juncture.

In other words, change for positives, not from negatives.

I will after a few days in the new regimen return to the blog.  In the interim, we are not bemoaning the presence of MM, we are enjoying the success to date of the treatment.  We have known all along MM is not curable, but treatable.

Multiple Myeloma

10-17-13

This afternoon I received an email with four pages of blood test results, only one of which I understand, because only one is significant.  My testosterone is very low, probably due to the treatment I have been undergoing.  I will get a shot on Monday morning, monthly thereafter.  That should decrease my fatigue.

More important, my MM is in remission.  Not cured, but under control, as I understand it. 

For a number of reasons, not due to any dissatisfaction with Dr. Milton, Mary Ann and I have decided to continue with Dr. Abonour, who devotes all of his time to MM.  Dr. Abonour is with the IU Simon Cancer Center.  We met with him last Monday - a good visit.

Since I am in remission, my continued treatment will change.  My revlimid dosage will decrease by 40%.  I will not continue the steroid dosage.  Both of those changes should also decrease my fatigue - I may have to help around here.  I suspect this treatment to continue indefinitely.

This, obviously, is good news.  I don't feel a bit better tonight, but expect to soon.

Multiple Myeloma

10-15-13

Yesterday was the expected crash-from-steroid day with the usual symptoms.  It also was the day Mary Ann hauled me to the IU Simon Cancer Center to get a second opinion from Dr. Abonour.

We were very impressed, not only in general, but specifically by Dr. Abonour's thoughts about my continuing treatment, which he will share with Dr. Milton later this week. Dr. Abonour will in the interim evaluate many tests from the six capsules of blood they took yesterday, and share those with Dr. Milton.

I will finish a 21 day regimen with Dr. Milton this week and will see him next Tuesday.  We will then decide how we want to proceed.

At this point, Mary Ann and I are most pleased with the expectations given us by Dr. Abonour.  More on that later as we hear more.

Multiple Myeloma

10-13-13

This may be convoluted - I am crashing.

A strange week.  Monday and Tuesday were the usual crash days.  Then Wednesday through Saturday, although I was up and out, made my meetings, helped Mary Ann and Karen get the back yard ready for winter, I was what I call light-headed every day.  I was able to drive, hit no one nor anything, but never felt quite right.  I have had some light-headed days for many years, many tests revealed no medical problems, so the past week may not have been due to MM.

Mary Ann and I watched church on my PC this morning, did some brief shopping, and went to a neighbor's1:30 football game (he is a fine player), came home, and I lay down for a few moments before Payton's game.  Three hours later, I awoke at halftime of the game and the steroid high from the Saturday morning hit was over - I have crashed.

Tomorrow Mary Ann will take me to the I.U. Simon Cancer Center for a second opinion. I don't expect any different opinion for treatment, time will tell.

We won't know much tomorrow evening but I will try to report the day.

Multiple Myeloma

10-12-13

The past two or three days have been a bit difficult.  Although I have been up and about, meeting with my Wednesday and Friday groups, having lunch with Laura, enjoying Beth's visit here, working out side to prepare for winter, I have not been "normal", whatever that is these days.  I have been less than steady walking, and I have been fuzzy headed most of the time, something like having a head cold causing a little confusion.

When I have breakfast, I will take my weekly steroid hit, which usually results in two "up" days.  I am hoping that happens later today.

Through circumstances too complicated to mention, I am getting a second opinion next week.  I have an appointment on Monday at the I.U. Simon Cancer Center for an evaluation by Dr. Rafat Abonour, whose specialty is MM, and who is an acknowledged expert.  The opinion is not because of any concern I have with Dr. Milton, nor with the results of my treatment to date.  I am, however, interested in what Dr. Abonour will have to say.  More on that later.

Multiple Myeloma

10-11-13

All things considered, much activity yesterday.  I met with the Wednesday group, came home to find Mary Ann preparing the back deck and pool area for closing.  Helped a bit, had a bite of lunch, rested, and then as Pool Care closed the pool, began putting summer furniture away for the winter.  All told, more than seven hours of up and about - even some heavy lifting.

So, today, not likely to get much outside work done.  We are meeting Laura for lunch, Beth is stopping by later, and since my MM treatment does not cause my hair to disappear, I plan to get it cut.  That, after yesterday, will probably be my activity for the day.

Multiple Myeloma

10-9-13

Yesterday, Tuesday, the second day of the crash, ended a bit better than Monday, but started poorly.  After all the sleep Monday, including more than 8 hours Monday night, I awoke befuddled and unable to walk straight - interested only in lying down.  By late afternoon, Mary Ann and I were able to get some of the pool area ready for closing, which is to happen today.  By bedtime, rather than report here as I said on Monday I would, I went on to bed.  Hence, this early morning musing.

We don't talk much about cancer.  We did, at dinner, observe that, until my diagnosis, we were unaware of Multiple Myeloma, and now just follow the Dr's instructions without question.  As I mentioned earlier, I asked about some relief from the "crash scene" and got a smiling "sorry."

This morning, back to normal, normal for one with MM.  That means, if I don't try to move or turn too quickly, I don't appear to have cancer.  I hope to make the Wednesday morning group meeting.  There, I am the iconoclast, but that was my role long before MM.  We have been reading "The Christian Agnostic" - one of the members suggested  that I am one!

Multiple Myeloma

10-7-13

Crash.  I have been asleep most of this day, which is good since when I am awake, what limited patience I have is constantly being tested. 

My favorite proverb "When words are many, transgression is not lacking. but the prudent are restrained in speech" seems appropriate, so I will be back tomorrow.

Multiple Myeloma

12-6-13

Two good steroid days.  Yesterday, Saturday, some work outside, a movie in the afternoon, brought dinner home.

Today, church, brunch, and football - too much football actually.

About the only difficulty I have on steroid days is a bit of a stumble, particularly when I turn too quickly.

Tomorrow, who knows, but past experience suggests a crash, a sleep filled day.   I will try to report.

Multiple Myeloma

10-5-13

Rather than taking my steroid hit on Friday morning which in the past has made Friday and Saturday good days, Sunday and Monday losers, I decided to wait until Saturday (today) for the hit, making today and tomorrow good days, saving the losers for Monday and Tuesday.  So, at 5am, 5 pills down.

Although probably not due to that change, all day yesterday, Friday, was a loser, almost as though my body was telling me it was due for a boost.  I did not get comfortable until I crawled into bed around 8:30.  I doubt I will go more than a week without the boost from now on.

I have described those loser days before, but I repeat:  I don't enjoy living with myself, nor am I any fun for Mary Ann and Karen who want to help, but can't.  I try to stay in my "cave" as much as possible.

Today and tomorrow will be interesting - I hope good.

MUltiple Myeloma

10-2-13

Having self-imposed a restriction on talking about constants, not much to relate.  I have been out and about each day this week, not for long, but reasonably normal, whatever that means. 

I did drive Mary Ann to a scheduled stress test, but I left to run errands - concerned they might say I was all the stress she could handle.  She passed.

Just got a flu shot which Dr. Milton strongly encouraged.  First time I can recall having to answer a questionnaire with numerous admissions of cancer.  Most of the time I ignore having such.

I have never wished for the great golfing days of October to end quickly.  Almost do this year, so I won't be wanting to get out in the yard.