My Dad

[sandem01]

Hi everyone...
I don't post much, but I have been getting on here more often since my Dad has recently been getting sicker after being on Dacogen for a successful year and a half. It stopped working in March, so they put him on Vidaza for almost 5 months (I think?) and it wasn't working. He has gotten 3 or 4 transfusions in the last month or so. Even though he has gotten transfusions and his hgb increased (to about 8.0 at the most), he has been feeling lousy for the past 2 weeks. He has been dizzy, nauseated, has had a strange stomach ache and has fainted 3 times. This past Saturday (Aug. 11 - his birthday of all days) we took him to the emergency room because he felt so bad all he could do was lay down. At the ER, they said they suspected an infection and possibly a blood clot in his lungs, so they pumped him with antibiotics and put him in a room on the Oncology floor. They figured out he didn't have any blood clot or any thing wrong with his stomach - except for being constipated. He was sent back home today, even though he has no appetite and is still uneasy on his feet. My mom said his voice sounded stronger like he's more awake.

His oncologist called my mom on Thursday and said he wanted to try him on Revlimid (because he has another dr. friend trying this on another patient with good results). He won't get to start this until about a week (red tape with insurance). He is also going to see a bone marrow disease specialist for a second opinion (but we aren't dropping his current doctor). I think I read where Revlimid is used on patients with the 5q chromosome (I'm sure I don't have this right, lol)? Does this mean he probably has that same chromosome issue? I hope and pray the Revlimid works as good as Dacogen did for 1 1/2 years!
Thanks for reading,
Jill

[PattiDean]

Jill, it is so sad to hear that your dad is not doing well, I know it has to be so difficult not being able to help him and see him suffer.

My husband, Dean, is 75, he was just diagnosed with RAEB-t and began Dacogen in July. He just finished his second cycle and his counts all increased. Our oncologist is putting Dean on Revlimid, as a matter of fact he received his medication today, lots of paperwork for this prescription.

We see our oncologist tomorrow, and I guess Dean will begin Revlimid after the appointment. Not sure if Dean will continue with Dacogen, our oncologist seems to think that Dean is in remission after just two cycles and is talking about taking my husband off of it. Not sure if we feel comfortable with that decision.

We have also heard the same about the 5q chromosome, but until now we have never found out if Dean has that chromosome, we are definitely going to ask the doctor tomorrow.

I will keep you and your dad in our thoughts and prayers. Please keep us posted on how your dad is doing.

[Neil Cuadra]

Jill,

I'm sorry to hear that Dacogen stopped helping your Dad and that Vidaza hasn't worked. It's true that one drug can succeed when another hasn't. Revlimid was originally found to be effective for patients with a certain type of defect in chromosome 5, a defect called 5q minus, 5q-, del(5q), or a few other names. Studies have found that Revlimid can help other patients too.

I'm sure glad your Dad didn't have a blood clot, although it sounds like they never fully explained what was wrong on his birthday.

It's a bit worrisome to hear that an oncologist wants to try Revlimid because he knows somebody who had good results with it. That type of decision should be based on research studies and statistics, not anecdotes. But I know that you are getting this information second-hand so perhaps that's not the reason the oncologist really gave.

[sandem01]

Thank you Patti and Neil! It's been a rough night since I posted this. The doctor called my mom and said that since he was just in the hospital and had all those fluids, antibiotics and blood and yet still is very weak, he thinks it could be turning into AML. He wanted my parents to come in to see him this morning at 9am to talk about it, but my mom has a sleep disorder, my dad can hardly walk, and after last night, there was no way. I do NOT want the doctor telling my dad he has aml and giving him a timeline for how long he has. I think he's better off not knowing.

This is what happened after the doctor's phone call. I went over there at 9pm to spend the night. He has been wetting himself before he can get to the bathroom. My mother is not strong at all. He fell when trying to go back to bed because he didn't tell us he needed us. We both had to try picking him up off the floor and onto the bed. It was very hard...he still weighs about 185 or less. He wet the bed at least 3 times last night, but my mom helped him to the bathroom one time. He acts like he is drugged, is walking like he is 100 years old, and I have never seen him this way. He feels feverish to the touch, too.

Based on all this, do you think they will say it's too late to try the Revlimid? He also has an appointment with the other bone marrow disease doctor on Monday. The way it's going right now, I wonder if this is the beginning of the end? I'm so scared and depressed.

[Sally C]

Dear Jill,
I am so sorry for what your Dad and his loved ones are going through.
I pray that things will turn around for him. I know it's hard on you having to be the caretaker and to witness what is going on.
If he is feeling feverish maybe you should take his temp and let the doctor know what's going on. He still could have some type of infection - and with low WBC it could get out of control quickly.
I wish you all the best.
God Bless,
Sally

[Neil Cuadra]

Jill,

Ironically, patients have to be strong enough to take strong drugs, so a patient who is weak may not be able to take a drug, due to the immediate risks, even if it could help them get stronger in the long run. But the doctor is the one most qualified to answer your Revlimid question.

Since Joe can't easily get to the bathroom and back, and he needs to keep up his fluid intake, I think it's a risk not to address the problem that he fell and could fall again. You could get a bedside portable commode, use a bedpan, or use adult diapers. None of them are especially dignified, but neither is wetting the bed or needing help with every bathroom trip.

The question of how much information your Dad and your Mom should have is a very personal decision. On the one side they deserve to know the facts and make their own decisions, but on the other side you know better than anyone whether they (or just one of them) will give up hope if they hear bad news. I tend to think that people should be given every opportunity to know what's happening to them and what their choices are, if they are competent to understand it, but I know plenty of people who take a different approach and don't want to know or share bad news. Some people don't handle bad news well but for some it's actually a benefit to replace fear of the unknown with cold hard facts, whatever they may be.

This is a very big burden for you so remember that sharing the burden will make it easier for you to cope. Some doctors are sensitive to this type of issue, and others are far too blunt when talking to patients and their families. It might be worth having a frank talk with the doctor privately, to share your opinion that giving a timeline may be "bad medicine". Still, be sensitive to clues about what your parents want to know or not know.

Remember that this may be a low point, with better days around the corner as your Dad regains strength, so try to keep your spirits up. Whatever optimism you can muster will rub off on everyone else.

[sandem01]

Thank you Sally...she talked to his nurse today, but I don't know if she told her that or not. He had a low grade fever on Saturday when we took him to the ER, but it went down by the time they let him out on Monday. He is very hot-natured anyway, so it could be that he's just hot.

Neil, the nurse today called Hospice so they could bring everything we need - a walker, a wheel chair, a bathing bench, etc. We are also getting him some "Depends" or Pull-ups. My mom let them know not to use the word "hospice" when they got there, and the nurse just whispered it when she got there. So thankful for that, even though he seems to be out of it for the most part. I am wondering whether it will be necessary to take him to that other doctor on Monday. He is so sick and weak, the new doctor doesn't know them like his own doctor, etc. I want good news and for them to fix him, but it's sounding more and more like it's not possible.

He has been able to eat a little today, his cereal, a cup of coffee, and I think he had some grits. He slept most of the day. I thought the appetite was a good sign...

Thank you for your answers everyone, I really appreciate it!

[Chirley]

Hi, if going to pass urine a few times a night and wetting himself is new, you'd have to suspect a urinary tract infection.

Maybe it's just part of his general debility but it wouldn't hurt to try to catch a sample of urine and have it tested. Untreated UTIs can have systemic effects on already debilitated elderly people.

When you're nursing and an elderly person presents with lethargy, confusion or agitation infection is always considered and a lot of times it's either chest or urine. The temperature is not always raised.

Good luck.

Chirley