Dr. Te said the word - Remission

A week ago Friday, I had my monthly appointment with Dr. Te. I ended up going up by myself because of many things. Patty had a procedure earlier in the week and still was feeling a little poor, so I convinced her that I could make it on my own. The trip went well and after taking care of a couple of items Friday, I was back on the road and made it home early Friday afternoon. , he went over the results of the blood work and tests that I had done for my one year after transplant. In general everything is doing very well and after going over the results of the bone biopsy pathology he said that I am technically in remission. He did add that since it was a sample from only one location, the odds are that some of the bad guys are probably still in there hiding. But I will take the good news, and keep eating a little poison every day to keep the little bad guys running and hiding for their lives - which I hope they lose. I am also still having Zometa on these every 4 week visits. The side effects from the Zometa are becoming pretty predictable - depending on how active I am on that Friday afternoon and Saturday. Traditionally, I feel pretty good until around 7 or 8:00 pm Saturday evening - sometimes sooner if I am very active. Anyway, around 8:00 pm, I start getting some aches in my legs, which get worse as the evening goes on. I take some tylenol or something that usually makes it a little better, then around bedtime, or an hour or so after going to bed, I usually get the cold shivers which last a couple of hours, then for the rest of the night I am over heated and spend most of the rest of the night throwing the covers off. Sunday morning I start feeling better, and by Sunday afternoon I am tired, but the aches are gone and I am usually feeling pretty well. I haven't got my orders going forward yet, Dr. Te is going to contact the LDS Hospital doctors to get a list of what and when I can start getting shots for all the things that were taken out when I got the heavy chemo last year. I think I have a lot of vacinations to get this year, more needles, I can hardly wait. This week Patty finally had her follow up appointment with Dr. Walsh at the Cleveland Clinic. We got a few answers and a lot more questions, he added another medicine to Patty's regime to hopefully help her existing medicines work better and smoother, she is still struggling with some side effects from a couple of medications that are giving her some fits, we hope to get them worked out soon. Life for Patty is like the old days of the Cracker Jacks boxed candies - when they had a lot of different prizes available - she never knows what the day will bring until she wakes up each morning. She has some interesting days, especially when her blood pressure stays very low for most of the day. Until next time, we wish everyone well, we hope that all is well with you and your family and friends.

1 Year - post transplant treatment

It's been a long, long, long, long, long... time since I posted. If you follow Amanda's blog "The Stewart's Space" http://randastewart.blogspot.com/ then you probably already know what's going on in our life. It has been since January when I last posted, since then we have been making our regular trips to Dr. Te's Office every 4 weeks. There were several times that I know I should have posted, like April 1st which would have been the 2 year anniversary of my stay in Centennial Hills Hospital when they isolated me for several days and didn't diagnois me for what my problem really was. Or a couple of weeks later on April 16th when it would have been 2 years since Dr. Smith in St. George first saw the protein spike in my blood work and did the follow up test to confirm that something wasn't right. Then on April 19th - 22nd when I was correctly diagnoised by Dr. Smith and then by Dr. Te to confirm with my first bone marrow biopsy, full body bone scan and other tests. I also should have posted on March and June to remember how one year ago I was in LDS Hospital in Salt Lake for my Stem Cell Transplants. This post is kind of a one year later story because on July 5th and 6th I had the blood tests, x-rays and bone marrow biopsy to see how my body is doing one year after the second Stem Cell Transplant last June 20th. I have some of my test results back and wanted to share some good news. One of the main multiple myeloma markers that they track is the "m" spike or Monoclonal Spike which get's checked on me every month that I have appointments. In April 2010 the results of my first test was 6.14 g/dL (grams / deciliters). When they first told me about this number, Dr. Te told us it needed to be down to about 1 before I would be ready for my Stem Cell Transplant. It took a while but I got close and hand the first transplant in March 2011, but by May the number had gone to 1.43 so I was scheduled for the second transplant. At the 100 day mark in Sept. 2011 it was right at 1.0, I was placed on a daily prescription for Revlimid for maintenance and over the last several months the number has steadily gone down, 0.91 - 0.71 - 0.64 - 0.61 - 0.54 - 0.34 - 0.32 and finally the last test on July 5th came up 0.26 g/dL. I guess that is what I get for eating a little poison daily. I guess I'll keep doing it until they tell me not to. The other good news from the tests is that the amount of bad stuff in my bone marrow biopsy was too small to register during the most recent test. I don't have any details on the results, but expect to get those details and also the results of the full body bone scan x-rays when I go to Dr. Te's office in about two weeks. As a side note, Dr. Te moved into his new offices on July 1st and it was very nice, it should work out very well for him and really has room to expand his practice if he chooses to. I have written before how I really appreciate the care I have received from Dr. Te and his staff. On July 6th, he really went above and beyond. I was scheduled that morning for my bone marrow biopsy at 8:30. They put me to sleep to do it - I have done it awake before, but it wasn't pleasant. At about 10:00 I went into the infusion room to get my zometa bone treatment. At about 11:00 I was done and ready to leave, unfortunately that morning Patty wasn't feeling to well and I drove myself there. Dr. Te would not let me drive myself home, so he drove me out to Coral Canyon while his wife followed us. I am pretty sure I would have made it there safely, but he would not let me try. Thanks again for Dr. Te. Unfortunately, for as good as my news has been, Patty has had a pretty rough spring and summer. We're going to some specialists and hope to get some good direction in the next month or so. I'm not going into much more about it, and if you've read Amanda's blog, she has a lot more detail. After we get some more direction from her specialists, I'll include more about her dealings with Parkinson's. I hope everyone is having a great summer. We had some issues over last weekend, but we really enjoyed going to Parowan last Saturday for the Mortensen Family reunion and enjoyed seeing a catching up with everyone that was able to make it there. A special thanks to everyone that helped put it together. Mom told me that we had about 55 attend and that 23 weren't able to come. It was a good turnout and hopefully next time we'll have an even higher percentage attend. It's a busy couple of weeks for our son Josh. In June he graduated from MidWestern University in Glendale AZ with a Doctor of Pharmacy (PharmD) degree and then started work for Kindred Hospital here in Las Vegas. This Friday he takes his national test and then around the first of August he takes the Nevada test to get his license. We all wish him well. Amanda and Ryan are relaxing this month, well not really, Ryan started his graduate program at Touro University in Henderson for Physical Therapy. In August they will continue their quest to have a little one or two or..., we are looking forward to success. Well, this has gone on plenty long enough, I'll try to be better, but I wouldn't expect too much from me. Thank you all for your good thoughts and prayers, maybe you could send a few Patty's way, and to the rest of our family. We could use all the help available. Until next time.

Happy New Year

I figured I'd surprise anyone that might look here once in a while. It's January 2, 2012 and we just got back (yesterday) from Morro Bay CA. We took the family, all six of us and the three four legged grand puppies to the CA central coast for Christmas Holiday. We rented a house so we were able to take the dogs with us. We left Monday morning Dec. 26th and drove down there. On Tuesday we took a couple of tours of Hearst Castle which is about 40 miles north of Morro Bay. Patty and I had been there several years ago so we knew what to expect, but it is still very impressive, and gives us commoners an idea of what the filthy rich were and are capable of. On Wednesday we rested and did some local sight seeing at the harbor and ate some pretty good sea food. Patty's sister Janet and her husband Tim were already there staying in their motor home in a local RV park. We had dinner with them and did some catching up. On Thursday, the kids decided they wanted to visit San Francisco so they got up early and made the drive (nearly 4 hours each way). They went to Alcatraz and saw some of the sights, it was pretty foggy though, so the sights had to be close to them. While they were in San Francisco, Janet, Tim, Patty and I did some sight seeing north of Morro Bay in Cambria and the San Simeon area. Janet and Tim left Friday morning to go back home. On Friday we went sight seeing to the north again and ended up north of San Simeon in a cove that is home to hundreds of Elephant Seals, when they come to shore to have their young. We got to see a lot of them and witnessed some big males and several newborn seal pups. On Saturday we went on a whale watching excursion. We saw some Gray Whales, but only got close to a couple of them. they don't "breach" like the Humpback Whales so you have to look closely. Ryan got some surprising good pictures that are better than what I saw with my naked eyes. It was a very good week, but as the clock started winding down on 2011, none of us were up to ringing in the new year, so we shared some sparkling cider and went to bed around 11:00pm. We did our traveling back home on Jan. 1st. It was nice to have all of us together for the week and we all got along very well. Amanda had an adventure with her phone, but you'll have to go to her http://randastewart.blogspot.com/ blog to hear the details.

Since it has been a long time since I posted anything about my treatments I'll tell you what I know.

In October I went on 5mg Revlimid every day for maintenance. I handled that OK so when I went back in November for my Zometa, I got the new prescription for Revlimid and they upped it to 10mg daily capsule. They took 4-5 vials of blood for testing, but the tests for the Myeloma markers weren't done by the time I went for my appointment the next day. In December they upped my daily Revlimid to 15mg and I am still doing pretty well. I get tired at the end of the day, but am able to make it all day and other than still not having the stamina that I use to, I'm getting along pretty well. I still haven't got the results from the blood tests of my myeloma markers, but I hope to see the December results this Friday when I go up for my January appointment. I believe they will keep me at the 15mg daily dose on my Revlimid, because the only larger dose is the 25mg I took last year. So I get the Zometa every 28 days. I take Revlimid every day and get blood drawn once a month. I'm feeling good and as you can see by the photos, my hair came back with a vengence, and got lots of curls and a slightly different and darker color than what I think it use to be.

Josh is staying with us for the next 12 weeks or so while he does rotations at a couple of hospitals in Las Vegas. He's been with us since Thanksgiving and he's been a big help around the house.

We are looking forward to seeing everyone at mom's party in Parowan this Saturday, although it would be nice to just rest this weekend. The party we always have the Saturday after Christmas was delayed one week this year because of New Year's Eve being last Saturday.

Well, Happy New Year, we hope and pray it will be a good one for everyone, that the economy will start to get better and everyone will get what they want, or at least what they deserve (only good I hope) We hope to see everyone on July at the reunion and thanks again to everyone that has kept us in their thoughts and prayers.