Hi Jack. Just finished day 4 of shots. That's all doc is giving me for now. WBC went up a a little to 1.2. Hgb dropped another gram now at 8.9. Plt dropped to 58000. Is the drug going to stop working?? I will be getting another biopsy prior to the next treatment. June 30. What do you think is going on? Anyway I'm feeling pretty good,just get tired easily and a little winded
Hope this finds you doing well.
Jerry
You could email me if you like. jcrunnin92@comcast.net

Hi Jack, I keep losing my messages. Sent one to you 6/6/20. Can't find it. LOL My counts still going down. WBC up to 1.2. PLT down to 59000. Hgb down to 8.9. Does it sound like the azacitidine is going to stop working? I feel pretty good except for some shortness of breath. And, less energy. Still on the treadmill. Doing 5 miles 2-3 times per week.
Hope this finds you doing well. If you would like to email me. jcrunnin92@comcast.net
Take care
Jerry

Hi Jerry. I'm sorry to take so long to get back to you but its been a busy time. To start with, my birthday was June 19 (74) and then there was Fathers Day and we were away at our kids house for a while. And now my wife had a full knee replacement a week or so ago and I've been paying her back for the great care she took of me when I had my transplant. My two year anniversary of that is coming up on July 18. That would be my birthday version 2.2. The nurses in the hospital tagged July 18th as birthday version 2.0.

I'm not the one to ask about things working or not working for you Jerry as I'm sure each doctor treats every patient and disease differently. What I can say is that I've been very lucky in that I continue to be on the mend. I had my last check up on June 10, after several months delays because of the virus. Next one is in August and they cut back on some of my meds. I am truly blessed and I'm convinced that a good deal of it goes to so many friends and family and their support and prayers. Of course the doctors did have a little to do with it. :) You take care, and I'll try to be a bit faster with my replies from now on.

Hi Jack. Bone marrow biopsy yesterday. Cell counts down but steady. Didn't start shots, going to wait for BM results. Will decide then what to do. Might continue azacitidine, might change drug. I don't know. Next appointment is July 7. I'm not sure what to expect. I'll let you know what happens
Praying you are staying safe from the covid virus.
Jerry

Hoping the BM results are positive for you Jerry. I haven't had to have one for some time and with any luck, as long as my numbers stay good I hope I won't have one for a while. The actual biopsy isn't so bad but the damn shots to deaden the area hurt more than the rest. Hope all goes well Jerry. Sounds like you have some decisions to make relative to treatments. Praying that what ever you decide has positive results.

Well I got my results today 7/7. All CBC counts went up slightly yeah! BM showed 5% myelocytes. They will help production of neutrophils. Good sign. Looks like azacitidine injections are helping I'm now back on round nine. Only 4 days though. It's good having the dose cut back. We're still waiting on a couple more test. Then possible call with my Dr in Chicago. I doubt that a transplant will be anytime in the future as long as corona virus is running ramped. My oncologist here says he expects the azacitidine to keep it stable for awhile. Could be months or 4-5 years. Only God knows the answer to that.
It's good to hear that you are doing so well. Keeping you in prayer for continued healing Thank you for your support.

Glad to hear things are going in the right direction. Hate that the virus could slow down you getting the treatment you may need. I've been a bit busy the past two weeks taking care of my wife after she had a knee replaced. She's doing good now and progressing well so I have a bit more time. I tell you, with her laid up for a while and me having to do all the daily chores, I sure appreciate what she does a whole lot more. I went to my GP today for my six month physical and got good general health report. I go back to my oncologist in August so I just hope I continue to stay on the high side of things. You are in my prayers Jerry. I hope that things continue to improve and if you do ultimately need a transplant, I hope it is as successful as mine.

Hi Jack, CBC today. Plt count down from 47000 to 23000. Hgb dropped off from 9.7 to 7.6. Bone marrow biopsy showing 5% blasts. Dr feels that bone marrow needs a rest from chemo. So,not starting today doing another CBC in 2weeks. Getting close to transfusion of not better.
Did you experience shortness of breath when your Hgb dropped? I hate the thought of starting transfusions.
Specialist in Chicago still won't allow me to go there because of the corona virus. Too risky.
Praying you are staying away from the virus. Hope all is going well for you.
Jerry

Hi Jerry. Man, I hate that your Plt and Hgb have dropped so hopefully by dropping the chemo for a couple of weeks it will help. I don't recall having any long term shortness of breath but once or twice I asked for some oxygen and all was fine. Of course they were trying to get my hgb and plts to drop to zero before the stem cell transplant. So far I've managed to stay away from the virus. I don't really do any socializing although I do play golf but I have my own cart so no sharing and I stay out of the club house and away from other people. You are in my prayers each night and you can do this. It's a difficult road to travel, I know. Just don't ever give up or stop trying. It's a real shame that you can't get to the specialist in Chicago since that may be the treatment you need. I'll continue my prayers and send good thoughts you way. Take care my friend.

Good day Jerry. I had my visit with my oncologist today and came away feeling relieved and blessed. My WBC is 8.0. My RBC is 4.56 ( a little low but just a bit). My HGB is 15.3 and my PLT is 266 so I'm in good shape, or so they tell me. They eliminated two of my medications completely so that's a good thing. Of course I'll have to keep an eye on things and make sure I don't experience any physical changes. It had been six weeks since my last visit and now they scheduled my next visit for three months out! I'm pleased about that because it's about a 180 mile round trip through the heart of the Dallas/Ft. Worth area to get there. I live about 25 miles SW of Fort Worth and the hospital is in far NE Dallas so it's quite a drive and I hate city driving. I share this with you not to make you feel bad because your not doing as well, but hopefully to give you hope and encouragement. You can beat this thing my friend. With prayer, great thoughts and modern medicine it can be done. I think of you often and offer up prayers each evening as I stand out in front of my house and turn my eyes to the sky in prayer. Take care my friend and may God grant you success in beating this beast.

Thank you so much for all the prayer. I'm so happy for you. Your counts are perfectly normal! Way to go! I had another count last Tues 18th. Results still the same No chemo for another two weeks. I'll have another count them. Again talking about the transplant. I'm anxious but a little afraid also. Just have to wait it out and follow doctor's advice.
Curious how did you feel during the procedure? What can you tell me about it?? Sickness? Hair loss? Anything. Guess you can tell I'm worried. I appreciate your support very much. Praying for you. Stay healthy my friend.

Hi Jerry. The procedure is really pretty simple and nothing more than a transfusion with no pain. Leading up to the transplant I had three days of some pretty heavy chemo. I got a buzz cut before going in so I really didn't have much hair loss. However, hair did not grow and I have to admit that it was pretty nice not to have to shave for several weeks/months after. As the chemo kicked in my level of strength dropped and I had no energy at all. Food didn't taste like much, regardless of what it was. Spicy food was the best because there was some taste with that. Everything else tasted like cardboard. I never did throw up although my stomach was pretty upset for a few days as a result of the chemo. But after the transplant the energy kept creeping up as the counts improved and about ten days after the transplant I was allowed to leave the hospital. Since I had to see the doctor daily for a few weeks and I live 80 miles from the hospital, I had to stay in a small apartment near the hospital for about three weeks. Fortunately the hospital has an agreement with a local apartment complex for very reasonable rates so that didn't break the bank. I have Medicare and a Medicare supplement that covered everything thank goodness. I can understand you being worried but in all honesty, it really wasn't that bad. The cost of the drugs are the one expense that can get pretty high and thankfully I'm off of everything except one medication now. It takes time to fully recover but it's worth the wait. I truly hope you will be able to go forward soon and get the treatments you need and deserve. Prayers my friend for success as you fight this invasive disease. You can do this!

Hi Jack. Thank you so much for sharing your experience. I had a CBC today. Counts still going down. WBC 1.3 Hgb 7.3 PLT 18. Dr says no chemo injections. Time for another biopsy. Also, says we're in a time window for transplant. So,,looks like it's off to Chicago. He wants me go there for the biopsy and Dr visit. Then we'll have video visit after biopsy results. Anyway it looks like the ball is starting to roll. Just waiting for biopsy appointment. I'll keep you posted. Praying for you always

Just curious, did you have to have a port put in? I'm not thrilled about it.

Biopsy scheduled for Sept 24 in Chicago.
Hope all is going well for you. Praying for you.