November 25, 2014.. We successfully made the 620 mile drive home today without any problems. We left at 4:45am and arrived home at 4:15pm. We passed through several road construction areas but we went through, there were no delays. We are very thankful for a safe trip.   

November 24, 2014.. Good news!! No maybe Great news! Dr Jethava said the myeloma is under control and all the test results were good. He is not changing anything at this time and I come back to Little Rock in 4 months for testing and if things look as good as they do now, he will stop my treatments completely. He also said my myeloma is back to smoldering. I had not thought of it this way but my myeloma markers are actually better than when I was first diagnosed. According to the MRI and PET scans, all focal lesions are now gone. He said some patients that reach this point go without treatment for as much as two years. When I stop smoldering, I will have to start treatment again. 

We were disappointed to find out I am going to have to change doctors.  Dr Jethava is taking responsibility for developing an allo stem cell transplant program (allo is using stem cells from a donor most of the time it is a sibling) at UAMS. I will see him on my return visit but I will have to see another doctor after that. I have confidence in him and really hate to change. 

We will leave to head home sometime way before daylight tomorrow morning. Reta has to play piano for a community Thanksgiving service at church Tuesday night. She does not have a backup to take her place.

I want to thank each of you for your prayers. I sincerely appreciate them. This Thanksgiving, we will have something extra special to be thankful for.  

November 23, 2014.. There was rain in Little Rock most of the day and we stayed at the apartment without going anywhere. We just stayed in and recovered from the previous days. There is no news to report today which I think is a good thing. 

Tomorrow, I have see Dr Jethava at 10am. 

I finished with a video I had edited at home and uploaded it today to share with family. Most of it was made at my nephew Gary's house in late October. The opening of the video was made in the Smokies on a camping trip earlier this year. If you want to view the video, click the link below. If it stops often, you will need to download it by clicking the download option and then run it when it is stored on your computer. I highly recommend my sister Audrey view the video.

Click Here to View the Video

November 22, 2014.. I got the final of my tests done today by completion of the PET scan. We got up at 4:00am to make sure we were there by the 6:30am appointment time. Getting to the PET area was not as easy was I thought it would be. We parked in the same parking building where we normally park. This was not the location in the instructions but we didn't know where the parking was located mentioned in the instructions. After we parked and started in the building, we found all doors were locked and not operating. We could not get into the building and didn't know what to do next. We finally saw a woman walking up the street toward the building and I ask her about getting into the building and told her I had a PET scan scheduled. She said I needed to be there on time because they mix the injection and it is good for only a little while after it is mixed. She said she would let me in so I could go to the PET area. We were really grateful for that and finally got to the PET area after winding all through the building. When we got to the PET area, the man on the desk told us he was afraid I was too late to get the test because the injection probably had expired. By then, we were 15 minutes late. He called one of the people in the testing area and found out they had given my injection to another person that had arrived early and I could take his injection. Whew! That was a close call! I filled out a paper form and got the radioactive glucose injection by iv. I had to wait for an hour after that before they could do the scan. The room I was waiting alone in had steel doors about 5 inches thick. They were too heavy to open by hand and had to be opened electrically. I don't know why the doors were so heavy and thick. I assume it was due to the radioactive liquids they inject there. After the wait, I was taken to the scanner. The scan took 45 minutes. I asked if the results would be available for the doctor for my 10am appointment Monday and he said it should be. 
After we finished, we celebrated by going to Cracker Barrel and getting breakfast. I am glad the testing is over. Tomorrow we have the whole day off so we will enjoy not being on a schedule. 

November 21, 2014.. Today was uneventful. We moved from our hotel room at Guest House Inn to the Home Away From Home apartment. It is in a nice location in sort of a country setting. The apartment complex is gated and a pass code is required to get through the gate. Our apartment is very nice. It is the nicest and largest we have ever had here. We feel very fortunate to get it even if it is for only a short time. 
I just got notice that my test results were available online for my bone marrow biopsy. There are so medical terms in it, I can't understand most of what is in the report but the best I can tell, the myeloma is better than it has been. It appears the percent plasma that was 15 percent at one time to 5 percent now. The M spike was over 5 at one time and is now 2.5. The desired result on both of these is zero. The Kyprolis seems to be working. I will know more about my whole situation when I talk to the doctor on Monday. 
We have to be at UAMS in the morning at 6:30 for a PET scan. We plan to get up at 4 in order to get ready, drive there and find the right place in the hospital. I will be injected with the radioactive glucose and then wait for about 45 minutes before the PET scan. I can't have anything to eat or drink after midnight other than water. I am so glad I can have water. That is the only test I have tomorrow so we should have plenty of resting time. 
Today was drizzling rain all day with more rain forecast for tomorrow. 

November 20, 2014.. Today was a hard and long day. We started the day at the hospital at 7am and were able to leave at 4:30. By the time we were able to leave, I was feeling pretty bad. It seemed the bone marrow procedure did not go as well as in the past. I had to wait several hours after I got to the area where they do it before they finally started to actually work on me and then things were just not as smooth as in the past. Just to complain a bit... I had not had any food or liquid of any kind since about 10pm last night and I asked for a drink of water and the person working with me told me she would get it soon but never did get it. When I finally got to the car, I drank about a quart of water. As soon as I got to the hotel, I laid down and I feel somewhat better now. 
One of the bad side effects of the drug I am getting (Kyprolis) to treat the myeloma is congestive heart failure. One of the tests that were run today was ProBNP. I am told this test measures if a person is having congestive heart failure. My test results in the past have always been well within limits but today it was considerably out of limits. My previous results had run in the 70's or so and today it was 369.  The top limit is 125.That brings all kinds of questions to my mind about what the doctor will say about that and what Kyprolis is doing to my body.
This morning when I was getting my blood drawn, I asked if they were collecting a ProBNP sample. She said no because it was not on the list to collect. When I met with the Physician's Assistant later in the day, he said I needed to get that test and sent me again to get another draw. They had to stick me 3 more times to get that one sample. 
Tomorrow, we move from the hotel where we are staying to an apartment for the remainder of our stay. It will be much more comfortable there and not cost as much. Tomorrow, I have no tests scheduled.     

November 19, 2014.. We have once again arrived in Little Rock. We left home this morning a little before 8am when the temperature was 10 degrees. We had a good drive to Little Rock with the sun shining most of the way. The traffic was heavy as usual but not as bad as on some trips we have made here before. We stopped in Memphis at Burger King just a short distance from the Interstate and met my brother Lester who lives in Memphis. We spent about 1.5 hours with him in a nice visit and then continued on to Little Rock. We drove the last 2 hours or so in the dark and we arrived at the hotel about 8:45 local time. Tomorrow will be a really busy day with my first appointment at 7am with other appointments following until the bone marrow procurement at 1pm. I have the preparation for that at 11:30am. The bone marrow procurement procedure will be the last thing for the day. I will not be able to have anything to eat or drink after midnight tonight in preparation for the bone marrow procedure. 

August 1, 2014.. We left Little Rock at 8am and arrived home at 9:30pm (on Friday). I was too tired to post a note here last night. The traffic was much heavier coming home than it was going to Little Rock. There was an accident west of Knoxville and had traffic stopped and that delayed us over an hour. 
This will be all for now. Thanks for caring enough to read this. ... Jerry 

July 31, 2014.. We went to the 12 noon doctor appointment and finally got to see him at 1:20. He thought the Kyprolis is working! That was great news. He said some of the important parameters had improved and expected them to improve even more as I receive more treatments. Before these tests were done, I had received a total of 10 infusions of Kyprolis. I received two more here but that was after the tests had been done. He also added Thalidomide to my treatment each day. I will take that daily throughout the month. I think there will be a short break at the end of each 28 day cycle, but I am not sure how long the break is. That is another expensive cancer medication. It is about $7200 per month. Hopefully that will add an extra push that will reduce the Myeloma even more. 
Yesterday I saw a lady from Bristol I have seen here twice before but I did not talk with her. There is also a couple here now that I had met at the KHO at Allendale. They are from Kingsport.  I called them today and they see the doctor tomorrow and will leave for Kingsport later in the day and drive at least part of the way. I am not the only one from our area driving all the way to Little Rock for treatment.
I have taken Lorazepam the past two nights to help offset the effects of the Dexamethasone. I have been sleeping very poorly after taking the Dex. So far, it has helped greatly.  
I am scheduled to return here for testing again in November. 
Thank you for your continued prayers for they are working. 
So tomorrow, we head home! Yippee!! 

July 30, 2014.. The Dexamethasone I take, before I get the Kyprolis , keeps me awake, sometimes for long periods of time. A friend from our Myeloma support group back home gave me a tip about taking Lorazapam before going to bed on the nights I have had Dexamethasone. I tried that last night and it helped greatly. I slept during the night! I hope I have found something what will help me sleep during those few days each week. I will try it again tonight. 

Today we are preparing to go to the Physician's Assistant appointment and then on to the bone marrow biopsy. I could not eat or drink after midnight last night so I am going to be very dry and hungry by the time I get out of the afternoon appointment. I am already missing being able to drink water. I figure I won't be finished with the procedure until after 3pm. I have another appointment at 4:30pm for the first of two Kyrpolis infusions. That will take until about 6pm if all goes well.  

Update tonight at 10:00pm:
I got the bone marrow biopsy. It went smoothly and I didn't have the pain I normally have since they did this one while I was sedated. They also took enough sample to do a gene array. I also got my Kyrpolis infusion. I was there from 4:30 until a bit after 7pm. I will go back for another infusion tomorrow at 4:30. My doctor appointment is at noon. 

July 29, 2014.. We made the drive to Little Rock yesterday. We left at 8am after getting up at 5:15am to get started. It just takes us a long time to get ready to leave. We had an uneventful drive here. The weather was good and the traffic was not real bad.

Since my last posting: I had to spend two days in the hospital due to a high fever. They did not find the exact cause of the high fever (up to 104.9). They gave me several rounds of different antibiotics and the fever went away. 

I have been getting the infusions of Kyprolis twice a week since my last visit to Little Rock. I will learn this week if it is helping with the Myeloma and I pray it is.  

We are now getting ready to leave for the hospital. My first scheduled test today is at 11:50am and a PET scan is this afternoon. I have not been allowed to eat anything since last night due to having the PET scan this afternoon. I am sure I will be really ready to eat when I am finally free but that won't be until about 6pm when I am finally finished testing for today. I will have to skip eating tomorrow too since I have the bone marrow biopsy and that is same day surgery (I will be sedated for the procedure).
  
The following was updated later in the day: I got the PET scan today. They injected the radioactive glucose and I waited one hour then they took me to the PET scanner and the scan took about 45 minutes. I also had a echo-cardiogram with contrast injected. That test took longer than I expected...about an hour. I will probably hear the results of these tests when I see the doctor Thursday. I went to get the Kyprolis infusion at 4:30. They had me scheduled to receive it but they did not have a doctor's orders to give it to me. We waited to get the order until 6pm and it never came so I was not able to get the infusion today. I will go back tomorrow and Thursday and get the two infusions. I sure wish I could have gotten it today as scheduled. They have strict rules that a doctor has to make the order for chemo. A nurse or nurse practitioner can not enter the order. I talked to the clinic manager and he said he would find out where the failure occurred in getting the doctor's orders entered for my infusion. 

My white count was 1.45, red count 3.09, hemoglobin 10.1. 

May 23,2014.. We arrived home at 12:40am on Friday, May 23. We left Little Rock to head home at 12:46pm. Our drive from Little Rock was uneventful except for a couple of delays due to road construction. We had no rain on the trip either going or coming back. It was a really long day since we got up at 5am in order to get packed up and to the hospital before 8am. 

I checked with the local oncologist and it looks like I will start treatment of the Kryprolis next Thursday. It will be by IV. I have been told it will take up to 4 hours to get the treatment each time. I will be getting it twice a week. The treatment is given on two consecutive days each week. I will be receiving three sets of treatments each month and then skip the fourth week. 

I pray this treatment works and works for a long time. My options are becoming more limited.   

We checked out of the hotel and Jerry got blood drawn again this morning at 8am. We then proceeded to the MIRT doctor's waiting room for our 10:00 appt. The couple we happened to be seated by asked where we were from...Jerry said northeast TN and asked if they were familiar with the Bristol area. Their response was unbelievable...the wife said she was very familiar with the area and that her great grandfather had lived in Surgoinsville and was a Caldwell. She now lives in Batesville, Arkansas. Jerry said he is a Caldwell and that we actually live in Surgoinsville which has since been incorporated into Church Hill. The chance of this happening is almost unbelievable given the fact that over 10,000 myeloma patients pass through these doors yearly. She has done extensive geneology research on her ancestry and decided they had to be somehow related. We didn't have much time to talk but managed to exchange phone nos. to keep in touch and find out additional information. By the way, her husband was also seeing the doctor for a myeloma appointment.

We are now on I-40 headed home at last. We left Little Rock at 1:45 Eastern time, which is late in the day for our 12-hr drive home. The doctor spent quite a long time with us explaining Jerry's current situation. Based on lab results, he said the Mekinist had not made much difference which was very disappointing to us. He explained that his bone marrow was pretty much "beaten up" so his recommended path forward for now would not be a stem cell transplant because of the heavy doses of chemo required in preparation for the transplant. Also, that the drugs normally used to treat myeloma would not work due to the rarer type of myeloma Jerry has. Instead of the Mekinist, he is to begin taking Krypolis via infusion 2 days each week along with the steroid, Dexamethazone. The Dex will be in pill form and always taken on infusion days. Dr. Jethava said he was very hopeful that this change in treatment would be more successful. We also are hoping and praying for good results.

Next appointment is two months from now with orders for a PET scan, sedation bone marrow biopsy, and blood work which is always a given.

As I write this, we are in a delay on I-40 caused by road construction that has already lasted 30 minutes.

May 21, 2014.. We didn't do anything special today. We plan to get things ready to check out of our hotel room early tomorrow to get to the blood draw appointment at 8am. We plan to leave for home after we finish with the doctor appointment. I don't expect to be finished at MIRT until about noon. I don't think I have ever left for a 12 hour drive at noon before. I know I will get really tired before we get home. We need to be there before Friday due to a commitment Reta has for all day Friday. I hope our appointment does not get delayed for some reason. We just can't tell how long things are going to take when we are here. 

We did not stay at the apartments where we have stayed and like so much. We thought we were only going to be here a max of two nights so we didn't try to get one of those apartments. We are staying at Guest House Inn near the hospital.

We will try to make a posting tomorrow while on the road giving an update as to what we found out from the doctor.  

May 20, 2014.. Today, I did not find out the information I thought I would. I had the tests done early in the day and then went to the doctor appointment. He had not received the results of the myeloma tests that were collected this morning. (They drew a total of 14 vials of blood for the lab tests.) Therefore, he was not able to determine if the Mekinist was making a difference in the myeloma so he had to reschedule another appointment at a later time. I wish they had scheduled me for the lab tests a couple of days earlier so he would have had the results. I am now scheduled for blood work again early Thursday morning (I am wondering what can change in my blood in two days) and then see the doctor for him to determine the new path forward. He explained several options with one of them being a stem cell transplant. He seemed to doubt the Mekinist would make a significant difference unless it was combined with some other drug. 

May 19, 2014.. We drove to Little Rock today. We left about 7:20am and arrived here at 8:15 EDST. We stopped for a short but nice visit with my brother who lives in Memphis. The drive was uneventful and the traffic was not as heavy as it normally is on the way here. We didn't even have to stop for any road construction or accidents. 

I have only the myeloma blood work tests and an EKG to be run tomorrow and then see the doctor at 1:30. We are both getting nervous about the doctor appointment when we will find out if the new drug I am on is helping fight the myeloma.  

I will try to update this blog tomorrow night to let everyone know what the doctor said. 

Thank you for caring enough to read this blog. 

April 16, 2014.. We were originally scheduled to return to UAMS in Little Rock last Thursday (April 10) but they allowed me to get the testing I needed done locally. The testing was to confirm my heart was in good enough condition to take the drug Mekinist. I finally got confirmation from UAMS to start taking the drug and started on April 15th. As I mentioned before, the drug is very expensive at at cost of over $9,200 per month.  

March 22, 2014.. We had a good drive back from Little Rock today. We arrived home at about 10pm. The traffic along the way was not as heavy as usual so we enjoyed the nice sunny day to have a driving trip. We stopped in Memphis and met my brother (who lives in Memphis) at a fast food restaurant and had breakfast with him. It was a real nice visit. It was a nice break and we felt more like making the remainder of the drive after the stop. We are very thankful for a safe trip and glad to be back home. Thank you for following along with us and thank you for your prayers.

We will return to Little Rock in 3 weeks to get started on the new medication. I will continue this blog at that time. 

March 21, 2014.. I learned some new things with my visit with the doctor today. As I said before, the doctor I was originally scheduled with had to be away so I was assigned to a young new doctor from Pakistan. He explained some things about my myeloma that I had not heard before. He said the myeloma I have is rather rare. He said it is slow a growing type and cannot be treated with drugs that are commonly used to treat most myeloma. He said he needed to consult with Dr Barlogie about what to do. We were surprised to see the world famous Dr Barlogie come into the room and he started looking over my file. After looking over my gene array information and other things, he told the young doctor he would recommend me starting on a drug called Mekinist. My understanding from what he said was there is a mutating gene that is causing my particular type myeloma and this drug stops the pathway that allows the gene to mutate. The drug is very expensive and I have to take it daily. One article I was reading online said the cost is over 163 thousand dollars per year. They determined my insurance will cover the cost after I pay the deductible. They will start the process of getting the drug to Little Rock and I will have to return here in 3 weeks. At that time, I will have to get some heart tests done before starting on the new drug and then four weeks after I start the drug, I will have to return to Little Rock again for an evaluation to see if the drug is working.
Tomorrow, we will head home. It will be really good to be home again. I wish we didn't have to come back so soon but I am thankful to get something going that might help me.  

March 20, 2014.. I finished my testing today. I got the bone marrow biopsy done that I have dreaded so much in the past. It was much different this time. I was able to get it done under sedation. It took much longer since things had to be done as if I was having normal surgery. I had to see a doctor's assistant, two anesthesiologists and lots of preparation before it was done in a regular operating room. It was so much easier than the way I had it done before. I had no pain at all during the procedure. The other way, was really painful in the past. I am going to try to have it done this way in the future, even though, it takes much longer to have it this way. This was my 7th bone marrow biopsy procedure.

Tomorrow we see a doctor to learn what his plan will be for my near future. We found out before we left home the doctor that I was scheduled to see had to be off work for a couple of months due to a family emergency. I will be seeing another doctor.

March 19, 2014.. Today was a big day as far as testing for me. I got a PET scan, blood work drawn (12 tubes including two huge ones) and two MRI scans. It was a full day. We left this morning at 7am and returned at 6:30 tonight with no stops in between. I was in the PET and MRI scanners over 2 hours. I was ready to break out of there by the time I was finished. It sure was a long, tiring day for both of us.
Tomorrow, I go for the bone marrow procurement for the biopsy. This time will be different than what I have been getting. This time, I will be sedated for the removal of the bone marrow samples. I think I will like that much better.

March 18, 2014.. Today we enjoyed spending some time in our apartment and resting up a bit. In the afternoon, we drove over to see some new apartments Little Rock Church/HomeAway from Home is in the process of obtaining for UAMS patients. These apartments are in a gated community and are very nice. We were really impressed with them.

Return to UAMS in Little Rock--March 17, 2014

March 17, 2014.. We made the drive to Little Rock today with no problems. The traffic was no heavier than usual (but was heavy). We were not delayed due to construction or an accident along our route. Delays have been common in our recent trips here. Overall, we had a good drive but we always arrive tired after the 620 mile drive. The time we arrived in Little Rock was about 6pm. We were able to get an apartment again at Home Away Home as we have during the last three trips here. We feared we would not be able to get the apartment since we were having a short stay this time. We hope it will be a short stay anyway. We won't know how long we will be here until we see the doctor Friday.
We were pleased to find the flowering trees have started showing their beauty. The same Bradford Pear trees that we enjoyed last fall (their leaves were bright red) are now nearing their peak in spring bloom. Last fall, we enjoyed the fall colors at home and when we got to Little Rock, we got to enjoy the color for an extended time.