As many of you are aware, I have had difficulty walking and been on a cane, walker, or at times even a wheelchair since Thanksgiving. I have not posted anything about it, because I kept waiting to try to determine the cause. All we knew was that there was severe pain in the hip.
First thought was, of course, the cancer, and second thought would be arthritis, but x-ray of the pelvic area shows the bone to be in good shape. It is, in fact the professional opinion of medical experts that I have a good-looking place where you sit.
Having reasonably ruled out other possibilities, it now seems to be injured/damaged muscles or nerves due to unknown causes, and I will begin physical therapy for the same in early January. Expectation is that I will be off of canes, etc., and walking normally again by end of January.
Regarding the cancer, I am scheduled to give another blood sample this week, and will post if there is any news to report once I get results.
Wednesday, November 18, 2015
There is no new direction to report from yesterday's visit with the cancer doc. The cancer continues it slow and steady increase. In the doc's words, "We're going to have to really get serious about making a decision (to resume chemo) soon," meaning probably next time. Then he said he didn't want to put me back onto chemo because I am so good-looking (or was it looking so good?). I will get another blood sample taken in late December, go see the local cancer doc again in February (if not sooner), and go back to Mayo Clinic in Rochester in March.
The long-awaited new cancer drug has been approved by the FDA, and should be available by perhaps January. It will be followed by another drug a couple of months later, and then a third one shortly after that. All that said, we will probably go back onto the old cancer drug that worked rather than one of the new drugs for two reasons:
- Insurance companies and perhaps the FDA may require that a patient be shown to have 3 therapies that failed before being given one of the new (very expensive) drugs. I can perhaps meet this criterion, but the stronger reason is
- We want to keep using the older drug until the cancer becomes resistant to it, then move on to the next available drug. Mixing drugs will create a cancer that is resistant to all of the them.
As always, thanks for the friendship and prayers.
Sunday, August 30, 2015
In light of those we know who are in much tougher days of cancer than I, my health status hardly seems worthy of posting, but for those who are so kind as to consistently and sincerely ask how I am doing in regard to the cancer fight, here is the latest. I went to see the cancer doc on Tuesday to discuss results of blood sampling done the week prior. The M-spike increased this time from 3.1 to 3.3, which really isn't too bad, given that it is a slighter increase than normal, and it was over a longer period of time than normal, but as always it begs the question of how high is too high, and when do we start hitting it with meds again?
We are going to continue holding off on the chemotherapy for now, but the doc is growing more nervous about it. On the one hand, you've got a it-doesn't-get-any-more-serious-than-this disease that you don't want to wait too long to treat, but on the other you have a body that is still in fairly good shape that you don't want to hit too soon with the chemo, coupled with a cancer that has a long established history of being a slow, smoldering increase. It's a nervy game to play. The doc is also concerned about some other indicators that the cancer may be reaching the danger level, such as a decreasing red blood count, and a decrease of some proteins called albumin that are made in the liver. So those will be watched, as well, as well, in deciding when to resume chemo.
Bottom line is that we're going to wait, go back in six weeks for a blood check with no doc visit, and then blood work with a doc visit in 3 months. The doc is still holding out and hoping that the monoclonal antibodies treatments get approved before I go back onto chemo. I guess that Carol and I are hoping that, too, and more.
Thanks as always for your friendship, support, caring and prayers.
Friday, June 19, 2015
I gave a blood sample on June 9, and went to see the doc this past Tuesday. The cancer went back up this time, but if you look at the cancer indicator levels over the past five months, things are pretty stable. The doc is not alarmed, and is calling to stay the course and have me come back and check on things again at the end of the summer.
The new drugs (antibody therapies) expected to be released in summer 2015 are not yet out. Once released, they will likely be very expensive, and insurance companies may require that certain less expensive therapies be shown to be ineffective for a patient before authorizing payment on the new drugs. We'll all just wait and see.
So for now, it is still waiting, watching, being at peace and going on with life, work, family and ministry until things turn different. I am working hard, feeling good most of the time, and getting tired a little easy. Three or four times a week, I make it to the gym and swim anywhere between 1.0 and 1.2 kilometers (5/8 to 3/4 mile).
Thanks for the love and prayers, and caring enough to so often ask how I am doing.
Wednesday, April 15, 2015
I had a good visit with the cancer doc yesterday afternoon. It was actually the most encouraging visit we have had in the 7 1/2 years we've been at this. There are three pieces of good news:
- From the blood work done last week, the cancer-indicating M-spike dropped from 3.1 to 2.8, a 10% decrease. Add to that, it was over a one month period instead of the normal two.
- I had a PET scan last week because the cancer had been rising rapidly and we needed to ascertain the risk in delaying chemotherapy for reasons discussed below. The result of the PET scan was that it yielded no evidence of active cancer. That doesn't mean that the cancer isn't there, just that it isn't raging out of control, and that is good news.
- The third piece of good news actually happened when I went to see the doctor last month, when the doctor used a phrase that no doctor has used with me in the past 7 1/2 years. He said "long term treatment." No doctor had said that before.
An excerpt from an email I received this week from my cancer doc at Mayo, who is also the head of the hematology department there, said "Ten years ago the probability of being alive at 3 years (after being diagnosed with multiple myeloma) was only about 30-40% while now it is closer to 90%." She went on to report that many patients are now surviving into the 15-20 year range. By God's grace, I hope to be one of them, and have a nice number years left in comparatively good quality health.
For now, I will stay off of chemotherapy, and get things checked again in two months (June). Docs in Texas and at Mayo are hoping I can stay off of chemo until the next round of new cancer drugs become available, something called "monoclonal antibodies." They are supposed to be effective at fighting the cancer, without some of the bad and permanent side effects of the last cancer drug I was on.
Thanks for the prayers, friendship and concern.
Friday, February 13, 2015
Just want to give you a quick update on the events of our recent trip to the Mayo Clinic in Rochester, MN. This was a normal two year, 200,000 mile checkup for me, since my stem cell transplant of 2013.
Climatologically, it was cold and snowy. We drove, and took a short side trip on the way up to see our son and his family in Peoria, Illinois. While there, they got 8" to 10" of snow. We didn't see ground without snow on it again until we got to Kansas City on the way home several days later. In Minnesota, the temps were about 2 degrees F while I walked to the clinic in the morning, and it was 17 degrees BELOW ZERO when we left Des Moines, IA on the way home Thursday morning.
Medically: The blood work at Mayo shows the same level of cancer as the blood work from Texas Oncology, or actually just a little bit lower. The very thorough X-rays they took show still no damage to the bones or skeletal system. My Mayo cancer doc is the head of the hematology department there, and she was perplexed about whether or not to recommend I resume chemo, and suggested I stay over an additional day for a PET scan to see how the cancer was doing. We stayed the extra day, but they were not able to work me in for the scan. They are two schools of thought in the household as to whether that was a fortunate or an unfortunate occurrence.
So, now it is back to waiting until early March for my next scheduled visit with my cancer doc at TX Oncology. If the doctors are undecided about whether or not I should resume chemotherapy, that is a "no" answer for me, because my trigger level for resuming is higher than theirs.
It was a good trip, with good additional data for making decisions. We also got to see some good friend we made while going through the transplant program together a couple of years ago. We also saw a lot snow, a lot or cars spun out by the side of the road due to the snow, and enjoyed the change of some cold, cold, weather for us Texans.
Thanks as always for the love, prayers and support.
Tuesday, January 13, 2015
I had a blood sample taken last week, and went to see the cancer doc today. After four months of staying fairly level, the cancer took a sharp and significant upward turn over the past two months. The cancer doctor is concerned, but agrees that I shouldn't take drastic action (resume chemo) based on a single data event. He is willing to wait until I go back to Mayo Clinic in Minnesota for a two-year since transplant checkup on Feb. 3, and then probably even get another blood sampling event at Texas Oncology in early March, before deciding what to do, or when to do it. In addition to the blood work, Mayo clinic will check the urine and x-ray the skeleton to see how it is doing, and either Mayo or Texas Oncology may sample the bone marrow to check on it.
I am still feeling very well, working hard at my job and ministries, and there does not yet seem to be impact on the body (bones or organs) from the cancer. I make this post because so many of you are so faithful to continually ask how I am doing.
Thank you. Your prayers, friendship and support are valued greatly.