Hate that your levels are going down but looks like you will be able to move forward with treatments. Hate the biopsy part as I'm sure you do. I think the pain killer is worse than the actual biopsy. Yes, I did have a port, actually a "tri-port" but all in one spot. Not that bad actually, once it's in place and makes it much easier for infusions, blood extraction, etc. Discomfort for a day or so but then you get used to it, or at least I did. Lets face it, when you have a bunch of lines going in all the time, it's difficult to do things like take a shower and even sleep (not that they let you sleep since they keep coming in to check on you every couple of hours. You'll settle in after a few days and then it just becomes a new routine. I felt pretty good throughout and watched a lot of TV and movies to pass the time. I went in with the attitude that "it is what it is" and there really wasn't anything I could do to change that so I just went with the flow knowing in my heart that it wouldn't last forever and that I'd come out better in the long run. So far so good. God bless Jerry and be positive.

You know, I don't know that I ever asked where you live. You may have told me but I'm pretty good at forgetting things. My home is in Granbury, TX, about 25 miles SW of Fort Worth but for years we lived in NE Illinois (Evanston and northern suburbs) and SE Wisconsin before moving to Texas in 1994.

Hi Jack. I really appreciate all your support and encouragement. Thank you. I live in Sterling Illinois. About 120 miles west of Chicago, just off of I 88. I have a good friend, a doctor I worked with in the navy 47 years ago he lives in Dallas.
This weekend I'm feeling a lot weaker than usual. I'm guessing the Hgb is down below 7. I'll probably call the Dr Tues if it's still the same or worse.
Glad to know you're doing well. Praying daily

Well Jack,I called the doctor yesterday and today had labs drawn. Hgb dropped down to 6.1 PLT down to 13000. Getting my first transfusion tomorrow 9/16. Two units. Another CBC Fri, maybe more then. Looks to me like I'm getting closer to transplant time. What do you think? I'm hanging in there. I'm sure I'll feel better with more blood. Take care my friend and have a great weekend.

Good morning Jerry. You will feel much better after you get more blood. I got two units every week to ten days for almost a year before I had my transplant. After I got a transfusion I always felt good for three or four days and then my levels would drop and I'd have to get more blood. Problem was that all the new blood was having an adverse affect on other organs and my spleen was becoming enlarged. Believe me, I share and understand your discomfort, both physically and mentally as you go through this process

I failed to respond to your previous message ... sorry about that. I know where Sterling is. We lived in NE Illinois and SE Wisconsin for years. My wife is from Iowa and would often visit. When I didn't feel like taking the interstate we'd stay on the back roads and Sterling was along the way.

I don't know if I've ever told you much about me, my family or what my wife spend years doing. We've been married for 51 years now and hope to make it many more. I've an Air Force veteren, serving from 1965 to 1969. We spent the last 25 years or so touring the country on a motorcycle. We have ridden to all of the lower 48 states from Texas, as well as riding in Hawaii on a visit there. The only state we missed was Alaska. When I got sick and with about 250,000 miles on the bike, we figured it was time to stop riding so we sold the bike and got a nice little sports car so we could still enjoy getting out with wind in our hair but a bit safer. We have two children, a son who lives in South Carolina and has given us two great grandchildren. Our daughter is married and lives about 100 miles east of us here in Texas. She's married to a great guy but no kids. At 40 I don't think she'll have any at this point.

Well, probably more than you wanted to know but I guess I was in a writing mood this morning. Take care my friend good luck as you move forward. Just never give up. I know it's difficult sometimes and the urge to give up creeps in but don't let it get the best of you. You're always in our thoughts and prayers.

Hello again Jack. Well I got 2 units of blood. Raised my Hgb to 8.8. Went to Chicago on the 24th. Had marrow biopsy again, no results yet. However, here it is Sept 30,Hgb down to 7.4 and I'm getting 2 more units, two weeks to the day. At least I'll feel better and have more energy. Dr in Chicago gave me platelets after biopsy. They gave me some hefty pain meds. Was a lot better. Previously I have not had that here in Sterling for a biopsy.

Interesting about your travels, we have been in every state except Alaska also. We love traveling. We were scheduled for a cruise to Alaska this last May, then this covid virus arrived and our trip was cancelled. Dr didn't approve my being on a ship anyway. We're not going to give up though, might be able to go by air after I get better. Next week we're going on a short trip to Wisconsin for some hiking. Just have to be careful and stay away from large crowds and wear our masks. Looking forward to something, I believe is healthy for us. Guess I've rambled enough for now. Take care and God bless. Jerry

Hi Jerry. I haven't heard from you for a while and am concerned. With this Covid going around there are worries on two fronts. I'm fine here although I do know several people who have tested positive. Two have been hospitalized but are past the danger point and have been released.

Now, how are you doing and what's going on lately? I thought I had responded to your last post but looking at the files I don't see anything so I must apologize for that. You must think I forgot about you and believe me, that is the fartherest thing from the truth. I think of you often and what you are experiencing and pray for the best. Really nothing to say about my condition since things seem to be going well but I would like an update from you if possible.

Thanksgiving is only a few days away and I can only hope that there are truly things to be thankful for. Let me know my friend, and God bless.

Hi Jack. I haven't had much news. I had the bone marrow biopsy 9/24 in Chicago. Haven't talked with that Dr yet. Supposed to have a phone chat next Fri. Almost loose faith in a place where you can't get results for two months. My oncologist here has been very helpful. CBC done weekly. Today's Hgb 6.8 so I'll be getting two units tomorrow. Only had two PLT pheresis so far, but tomorrows will make 9 units in 2 months. Get blood about every 2-3 weeks. Makes me feel a lot better. Amazing how I can tell when I need it though.
Chicago is a hot spot for the corona virus yet. Dr's don't want me anywhere near Chicago, so that keeps me from getting the transplant. I'll find out more next week.
Glad you are still doing well and staying away from the virus. I'll let you know what Dr in Chicago says. Take care. Always praying for you.

HAPPY ☺ THANKSGIVING JACK! We're staying home. And staying safe.

Hi Jack. Hope you had a good thanksgiving. We prepared the meal here then delivered plates to family. It was fun yet different.
I got 2units of blood last Monday. Hgb dropped to 6.4 Dr in Chicago called. Bone marrow showing increase of 15% blasts. Need to get that count down so back on azacitidine January 4. Two other drugs along with it. Venclaxta New drug just FDA approved for AML but the trial is promising for MDS . The other one is Noxaphil an anti fungal drug not sure why I need that but I'm not the doctor I'm guessing to prevent infections while white cells are being sapped. They are talking transplant maybe in March if blasts count is down. Time will tell. It's getting to be a scary procedure not knowing what to expect or how I will feel.
Well, I guess that's all for now. Have a very Merry Christmas and happy New year. Thank you again for your support. Praying for you. Stay healthy. Jerry

Hope you had a good Christmas and a happy New year. Tomorrow I start the new drugs and vidaza again. Fun times huh? I've been getting blood more frequently. About every 2-3 weeks. Tonight I'm feeling like another transfusion is in line for this week. I hope they get to the transplant soon.
How have you been doing? Praying for you that you're staying healthy. Looks like there is some relief in sight with the new vaccine.
Take care! Jerry

Good morning Jerry. Looking back at the posts it appears I did not respond to your post just after Thanksgiving and for that I apologize. I'll blame it on old age. It looks like you are getting transfusions less frequently then I did since I was having to get two units about every seven to ten days before the transplant so that's a good thing. I hope the new vaccine is successful but I have not gotten it yet. I'll be talking to my doctor today to see if he's okay with me getting it and if in fact I can get it. I've been doing fine but need to get in to see my oncologist. I haven't seen him for several months now, mainly because I'm leery about going to the crowded hospital with the virus so prevalent right now. I do talk to him every couple of weeks to go over things but have not had my blood checked for some time now. Although I feel fine overall, anytime I feel a little "off", I can't help wondering if it's just normal feelings or if it's related to the MDS. I guess that's a normal reaction. On the lighter side of things, I'm playing golf when ever the weather cooperates and we got something new to allow us to get out and about without having to deal with people up close and personal. We bought a travel trailer. A nice 30 foot trailer that we'll take on its maiden voyage this coming Wednesday. We want to be able to visit our son and his family in South Carolina as well as my wife's sister and husband in Florida but will not fly now and with the trailer we can avoid having to stay in motels and eating in restaurants along the way. We're excited. We had a nice but very quiet Christmas and New Years. Our daughter and her husband live about 100 miles from us and we usually spend holidays with them either at their place or hours but this year they went to Arkansas to spend it with his mother and with our son and his family in NC, it was just the two of us. It rained pretty good on New Years eve so for a change we got a pretty good nights sleep since it was too wet for the neighbors to be shooting off fireworks into the wee hours like they usually do.
Well, that's about it. Praying for you my friend and hope you can get the transplant and it's successful as mine was. Take care and I'll try to do better with keeping up.

Gosh it's good to hear from you. Glad you had a great holiday season. Never thought about travel trailer. Good idea. Not sure I'd be very good at towing one.
Dr in Chicago says one more round of treatment then we'll tap the bone marrow again. She is looking for the cancer cells percentage to go down. Neutrophil count is very low and total WBC is down to 1.0 and droping. Now taking meds for fungal viral and bacterial Just preventing infections. I'm looking forward to transplant but still worried we don't drive in Chicago anymore my brother usually drives worried about recovery time,might have to live in Chicago for awhile not a fun thought Well guess I'll stop rambling for tonight. Will chat more later. Take care and God bless. Jerry

Good morning Jerry. Great to hear from you as well. I never had problems with my WBC but by RBC was my issue going in but the overall issue was my HGB. I don't envy you having to have another bone marrow biopsy. I hated those things. I'm sure that if you have to stay in Chicago it won't be a treat. After my transplant and my levels climbed back toward normal, I had to stay near the hospital for an additional three weeks before I could come home. I live about 90 miles away but had to be within a half hour of the hospital so we had to stay in an apartment nearby. Fortunately the hospital has an agreement with a complex nearby that only cost us like $20 a day or so. Still, it was not comfortable and I had to go back to the hospital on a daily basis for those three weeks. When I did get to go home I still had to go back to the hospital on a weekly basis for quite a while. Then two weeks, then once a month, then three months and now it's been quite a while since I've been there. I did have one appointment that I cancelled when the pandemic was peaking locally because I did not want to be in that environment. I have an appointment next week Wednesday but it's just a check up and I'll make that one. It's been a while since I've had my blood checked so about time. I continue to feel good, although this virus concerns me. I try to avoid being around groups of people, especially in meetings and such. I don't know if I told you but I am pretty involved with both the American Legion and the VFW. I'm an officer in the Legion and we have business meetings and such that I attend. It bothers me because many there do not wear masks or social distance, although I avoid those people as much as possible. We've had several members come down with Covid and several die. But back to you. Hopefully you'll be able to get the transplant and I pray that it is as successful with you as it has been with me. That's about it for me right now. We did take our first trip in the trailer last week for a couple of days and enjoyed it. My biggest issue now is that my truck is not quite big enough to pull the trailer if we go to the mountains, which is what we want to do. We're looking at a larger truck but no one has any inventory right now. We almost bit the bullet yesterday on one but it was quite a bit more expensive than we wanted so still looking. But sooner or later we'll find what we need at a price we can afford. You take care my friend, and keep me posted on your progress.

Hi Jack, good to hear from you My counts seem to be dropping rapid!my. I got two units of blood on the 11th , went in for a count this Monday 18th Hgb was 7.4 PLT 10. So back in for two more units and one unit PLT. This new drug Venclaxta is nasty. I'm hanging in there though. We'll see what it is Mon WBC is down to 0.1
Glad to hear you're doing well. I'll stay in touch. Take care. Jerry