my dads oncologist won't infuse him until he gets down to 8. which he is due this week again. about every 10 days or so.

just got off the phone with my stepmom. dad had his weekly blood test this morning and his hb dropped from 8.3 last tuesday to 6.3 today. also his plts are down to 16. not good for a drop like that in a few days.

David's hg was consistently in the 8's and he consistently felt awful with extreme fatigue and weakness and was seriously considering stopping future transfusions. He rejected vidaza. Hemotologist suggested transfusing if under 9.5. What a difference!!!! He is not dancing but has rejoined the human race and stopped talking about the dead end street. I am a little disappointed that he had to feel so awful for the best part of the summer but am extremely grateful for the improvement.

Oh dear, Poshshorty, that doesn't sound good at all. Maybe it's just one of those aberrations of count?

Saw my oncologist today. In our visit, he said that my Hgb was 10.1, but my printout shows 10.5. Talk about aberrations! Since I've only had Aranesp every 3 weeks for the last 6, I think I'm doing just great. The other numbers are all within the realm.

I asked about new health-care rules, and he said the Drs are worried about what's to come, but nothing specific has happened yet, except that patients just starting or restarting Aranesp must now sign a form that he calls "black box." I guess that's to let everyone off the hook if you keel over.

I think that paperwork from the new rules will likely kill our doctors before us patients.

He told me that Medicare has nothing to do with the blood level before xfusions, that each clinic decides that. He said that our clinic xfuses when you are less than 8.

I also asked about a shingles shot, and he said go for it. I plan to see my regular Dr for that and the flu shot, hopefully in the same visit.

Rachael, I feel so fortunate to be painfree and reasonably energetic. Each time I see the Dr, I'm asked about my pain level, and I have none. In fact, I feel so darned normal, sometimes I feel like an imposter in this group! I guess my day will come eventually.

Hey all,

We got notice of my wife's sister death Sunday morning and left for Va in early afternoon. We stayed in Western TN Sunday night and made it to Roanoke last night. A busy day today with viewings etc so finally back at the hotel around 9 pm. I had thought about getting the lab work this week for a transfusion as I was gettting some shortness of breath but that obviously got delayed. My doc is a phone call away but the schedule here won't support me being in the day surgery for 6 hours so will see how I do between now and when we get back home. I'm really tired but have not had much breathing problems here so far so am hoping things are headed back up. Funeral home full of kids and folks that work around them so I'm hangin out outside LOL. It's been 3 weeks since last chemo and 5 since last transfusion so doing pretty good this time.

Just thought I'd chat a bit while winding down. Have a great week all.

God Bless,
Mike

Mike I am sorry about your sister in law.


birdmom he has to have 3 units of blood tomorrow and a unit of plts. hasn't been this bad in awhile.

what I am wondering is if stress has a big effect on how much blood you need. or maybe how fast you use it up!

Mike, my condolences on your sister-in-law's passing. Was it unexpected?

Posh, that's quite a xfusion your dad is going to have. Good question about the role of stress. Unfortunately, I have no answer, altho we all know that stress makes any disease worse. How about the rest of the crew--thoughts, experiences?

Her passing was somewhat unexpected but she had a lot of things going wrong. She had just had her pacemaker redone a couple of weeks ago but was going to have to do dialysis. Anyhow it appears she just had a massive heart attack and probably never knew what happened. All else is going good. No problem sleeping LOL

Have a great week and God Bless.
Mike

dads appointment today was not what we had hoped. his transfusions on wednesday didn't seem to help alot. he had 3 units of blood and 1 plts. he has to go back for more. he told his dr he is getting really tired of doing this every single week. I think he wants to stop. not sure how to deal with this.

dads dr called back after we got back yesterday and said he is dehydrated and it has all his other counts way off. this just doesn't seem good to me.

Thoughts and prayers are with you and your family.

Poshshorty,

My thoughts and prayers are with you and your family as well.

I've had problems with dehydration for reasons other than MDS, and I can tell you that you simply don't feel well when that's the situation. It isn't just blood counts that are out of whack. Hopefully your father's spirits will lift once they get everything else back in balance. I pray so. I know I was much less optimistic when it wasn't just my counts that were a problem.

Poshshorty, it does get difficult to find the will and strength to continue to fight. I'm only 55, so I have little excuse other than I've been in treatments for cancer for 2 plus years, and now my marrow is failing. Sometimes we just get tired. I can relate to how your father feels. However, I have rallied on more than one occasion. My spirits right now are very good despite the fact that my Hgb continues to drop despite Aranesp... I pray I'm not going to be transfusion dependent, but I don't know. It's possible.

If I were to make any suggestions- and much of this depends on your father and his personality- spend time with him, expose him to things that make him laugh or you know spark his humor, listen to him, tell him how much he his loved, tell him what a wonderful father he is, talk about his passions, his reasons for living. Just be with him. Acceptance of how we feel and where we are at any given point is important. We need to feel heard. When I wasn't having good days, it made me more irritable to hear people tell me I was going to beat this, that I just needed to fight. They meant well, but it didn't help. Again, these are things that mean the world to me. I belong to another support group where I can and am far more supportive as a long-time member. As a patient and a supporter, I've found the words to at least let people feel heard. We need people to listen, to empathize. I don't try to get people to laugh when I post on the other site, but it's one of the best medicines I know of.
God bless,
Sherry

pot shorty please know you and dad are in our prayers as well. I hope your Dad, Doc and you can come to some conclusions soon so you all know what your working with.



We made it back from the funeral Friday night just in time for the kids and grandkids to get in. I'm pretty much wore out from the trip but managed to keep up LOL. Will try to set up lab for Tues for transfusion on Wed probably. I have chemo again next week so it should help some through that too.

Everyone have a great week and God Bless,
Mike

sherri thank you so much. Dad is 81 and is so tired of dealing with the drs and getting stuck at least a couple of times a week between blood tests and transfusions. thing is I do understand how he feels and I would fully support his decision if he chooses to stop. I know where he is going when he goes and to me that is a huge comfort. I spend alot of time with him. He knows how much I love him and I know he loves me.


Mike I am glad you made it back safe. rest up and thank you so much for your support.

I was debating how to answer poshshorty, when an angel by the name of Sherry came to the rescue. Thank you for saying what I didn't seem able to.

Posh's dad is understandably tired of all the medical bouts, only to feel lousy anyway. If that's partly due to dehydration, then perhaps he will feel better once his system is back in balance.

Of course, he is aware that the disease will take its toll regardless, & he may want to let nature have its way, hard is that is on the family. I think we all consider this same scenario for ourselves down the road. And each of us will have a different path. There are no right or wrong answers to this question.

Mike, I'm happy that you're getting a grandchild fix.