My Dad

[jaxem]

katie
if his whites were down to zilch, they may have given him a neupogen or neulasta shot which stimulates white cell production tremendously. since cell production is done in the marrow which a lot of it is in the pelvic area (and the kidney area is in that same area), he may have gotten excrutiating pain coming from the wound caused by a recent bone marrow biopsy. that pain usually goes away in a short time. getting the shot would also explain the improvement in whites although i would expect it would be better than 1.2.

[katiebear]

Nicole,

It made me feel better that your dad had the pain also. My dad was in alot of pain, they offered him oxycotin, and he turned it down as he is a recovering alcholic (27 years sober), and he refuses barbituates. I told him he needs to rest and he should take it, he wouldn’t. I just got off the phone with him, there is no fever which is good. Yesterday he had a catscan and from what he is telling me his organs are okay. The fluid retention thing is bothering me too. Thanks for your help.

Jack,

He has been getting neupogen for quite sometime now, and he has mentioned bone pain before, but nothing of this magnitude. I think my biggest fear is that he went from nothing to too much too soon which means the chemo was ineffective. Can that happen? I keep looking for signs of something. How is your wife doing? I’m still praying. I hope she is feeling well.

Thanks for everything,
Katie

[lynette]

Katie,
Do you know if your Dad has had a SMAC blood test? This is a test for electrolytes, liver and kidney function. The fluid retention and lack of urination is of concern. My Mom went into renal failure quickly. Ask the nurse for the SMAC results. If the BUN and creatinine are high or rising, your Dad should have a Nephrologist consult.
Take care,
Lynette

[katiebear]

Lynette,

I don’t know about the SMAC blood test, but I will find out. I went up yesterday to visit, and you can see the fluid retention in his legs. He swears it’s because they pumped him with fluids during the chemo. I’m not so sure about that especially if he didn’t urinate for a day. He did do alot of urinating Wed. night though. I guess that’s good. His white count is now up to 3.2. It jumped again. His neutrophils are at 1. I think he might be discharged this weekend. I just hope the chemo did the trick, and he can move on to transplant. He is still in alot of pain. No fever though. He insists on telling me it’s from the marrow. Thank you for your help.

Katie

[riley]

Katie, you’ve been on my mind today. How is your father doing?

Nicole

[jaxem]

katie
my wife’s bmb showed a reduction in blasts from 5 to 2%. I am elated! she’s back in the hospital again after running a 105 fever due to a bug she picked up but doing well. next hurdle is to get her heart’s ejection fraction up (also damaged by chemo following breast surgery) which will qualify her for the cord tx @ Sloan. she’s working w/ a cardiologist now.

your dad’s whites & anc”s sound good (for mds patients). did he get discharged? i guess he’ll be getting a bmb soon to see if the chemo worked. a lot of praying is in order.

[katiebear]

Hi Nicole and Jack,

That’t the best news Jack! I’m so happy for you guys. I’m glad she pulled through the fever. That can be pretty scary.

My dad got discharged on Saturday. We’ve had a nice few days. We went to church together Sunday, and that did me a world of good. I’m up at the crack of dawn today to take my dad for his BMB at Sloan. He is not allowed to drive, and his transplant doc told him no public transportation, so finally, Nicole, I get to see the doctor. I’m very scared. I have been praying for remission like there is no tomorrow. Before he left the hospital his counts jumped alot very fast. They went from nothing one day to 1.2 the next, and then 3.5 the following day, and then the day after that his whites were in normal range. I hope that’s not too fast. But today, we should know a little bit more. Thank you both for your concern. Thank you for being there Nicole. I am praying like crazy for your wife, Jack. I will write more later.

Katie

[Russ P.]

Katie
Just said a prayer for your Dad, may he continue to improve.
Russ

[riley]

Hi Katie,

I’m glad your father is home now! Today is a big day for both of you. I’m praying that the BMB goes smoothly and will be painless for your dad and that he will get the results he needs to be able to go ahead with the transplant, if he chooses to. I’m also praying for you and your conversation with the doctor. I hope that being able to ask your questions and get some answers will help.

After my father’s second round of chemo, and after waiting more than a month for his counts to come back, they came back very quickly too. For us, it ended up being good news with a partial remission that lasted for about a year with no need for him to have more chemo. I hope it will be good news for your father too!

I will talk with you again soon. Email or call later if you want to.

Nicole

[katiebear]

Thanks everybody for your good wishes, they are greatly appreciated. We had a good trip up to Sloan. I met the doctor and got to ask alot of questions. They said they could possibly have the reslults of the BMB today, being that they want him back for the transplant ASAP if his blasts get below 10% or if he’s in remission. My dad called about an hour ago and informs me that Sloan called (not his doc), and all they tell him is his blasts haven’t gone up from the 12% he started at before the induction chemo. So needless to say, I ask him what are his actual blasts, and he tells me he doesn’t know. I wanted to scream in frustration, but didn’t. What does this mean? I feel like if he was in remission, he would of been told already. Maybe he will get the bad news from his doc tomorrow? Maybe I’m imagining things. Maybe he isn’t telling me all at this time? I just don’t know.

[jaxem]

katie
it usually takes at least a day to get a preliminary report & then about 3 days to get a final report from a bmb. i’m hoping it’s low enough to do the transplant.

[riley]

Katie, our experience is the same as Jack’s — this quickly, all they ever had for us was a preliminary report. A final report took any where from several days to a couple of weeks. The prelim and final reports could sometimes vary a bit. Keep us posted on what you learn in the next few days. I’m praying along with you.

Nicole

[katiebear]

My dad’s doc called yesterday afternoon and told him he is scheduled for the 24th of this month. She still had no “final numbers” for my dad as far as his blasts go. She did mention that she wants to use the MUD, so maybe that is an indication that his blasts are above 5%, but I don’t really know. This whole thing is very frustrating. All that is known for sure is that the blasts didn’t go up. One small thing to be very thankful for. All this waiting is driving me crazy.

On a lighter note, we are having a Father’s Day bbq for my dad, and I am really looking forward to it. Our family has not been the same since my mom passed away, and we don’t get together too much, so I am really looking forward to this. No matter what, I realize how lucky I am to have my father here.

How is your wife coming along, Jack? You guys remain in my prayers.

[katiebear]

My dad’s blasts are down to 3%. We are so happy! We almost don’t believe it. This is going to be an extra special father’s day. He is scheduled to go in on the 24th. I believe his doctor is going to use the MUD. I have to take his back this Weds. and will know more then. Thanks everybody for all the prayers.

[chuckk333]

What is the MUD??

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