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WBR update and 2 YEARS for dad!!


SLT

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Good morning everyone!

Well my Dad has officially made it 2 years since diagnosis! This board has had some sad news the past week which just makes my heart ache, but I do have good news to report today. :D

First, I have to be so thankful that after 2 years, I'm lucky enough to still have my father with us. It really goes to show statistics mean nothing! Dad was given 9 - 12 months to live. He was diagnosed at 72 so he opted for "quality of life" and chose not to undergo harsh treatment. So he had radiation to the tumour and attempted Navelbine 1.5 years ago and had to stop due to temporary bowel paralysis. Other than that - he's had little treatment. He has played lots of golf for two summers and has played in a pool league the past two winters. I'm so thankful we've had Dad longer than expected and he has had good quality of life in the past 2 years. The brain lesion has been a major setback, but were fighting our way through that...

It has been about 5 weeks since Dad completed WBR. I have to say, it really knocked Dad for a loop. It drained every last morsel of energy from Dad's body and at the same time Dad's legs started swelling. Well, one leg ended up HUGE and the next thing we know, he has a blood clot in his leg. So he was treated for that. During all of this, Dad was getting a lot of pain in his legs and started over medicating himself. He was nodding off all day long and could not sleep at night and would just roam. He got really, really dopey and we began to wonder what the radiation actually did to his brain. Well, he had to be hospitalized to get his leg straightened away and as soon as they started controlling Dad's medication, the old Dad we know and love returned. He was completey over medicated and his brain is actually working just fine!!

Well the good news is this...he had a brain, chest and abdomen scan done. The lesion in his head has shrunk significantly and there is nothing new showing on the chest and abdomen scan! YEAH!! :D Dad's legs are no longer swollen and he's starting to get back on his feet and trying to regain some strength. Hopefully, Dad can start Tarceva soon! We will also discuss using SRS on whats left of the brain lesion at Dad's next oncology appt.

I do have a question...have any caregivers had problems administering pills to their loved ones?? Dad insists he can do it for himself and we've realized that he shouldn't be. He won't listen to my mother at all! I created a daily spreadsheet that he can record times he takes meds and printed him off a bunch of sheets, but that only worked until he was too dopey to know what he was doing!! He's aware of the mess he got himself into recently, but who's to say it won't happen again? He doesn't want to give up his independence and he's so stubborn!!

Thanks for reading. :)

Sherri

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Hi Sherri, my dad was the same way about his meds and being in control of them.

Just have your mom (or you) put exactly what is needed in a prescription bottle at each scheduled medication time (clearly mark and put the remainder in a container or ziploc baggie)

EX: So when your dad goes to take his meds at 3pm- there will only be one (or 2) pills in each bottle. He can't possibly take too much and if he misses a pill, you will know it!

Hope that helps. It's kind of a tricky way to do things, but you do what you can.

After one or two times he will catch on to what you are doing. Just let him know that this way you both compromise, both sides win. You are sure he isn't taking too much, while he is in control of taking his meds on his own.

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Sherri,

this news about your Dad is very uplifting. we needed

some good news on the board. As for medication, I think most men

are worried about "loosing" their independance. It has at times been a

bone of contention with my husband. He calls me "nurse Ratchet" :roll:

So yes we have issues with this situation, but Alan now lets me give him

his medication.

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I am glad your dad's disease is being held in check and he is back to being lucid. Maybe you will have to monitor his pill taking a bit.

Cyberknife surgery is another option that you all can consider for managing mets and finishing off the brain tumor. It does not require rigid immobilization of the head.

http://www.cyberknifesupport.org/forum/default.aspx?c=4

http://www.accuray.com/

Don M

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So glad your dad is doing well. I am fortunate in that my wife allows me to manage her medications. I use a pill wheel with the days marked on the compartments. I fill them with all the medications and then I put those for the next morning on a saucer. I leave those for the next evening in the wheel. As soon as she takes the morning pills, I put the evening pills in the saucer. And so on. Works for us. It is definitely advisable, with all the medications, that someone else other than the patient manage the dispensing.

Control is the issue and perhaps you can think of other areas where your dad can maintain control of his life -- letting him do some things. Might soften the blow of not managing his own meds. Don

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My husband tried to do administer his own medication but definitely cannot at this stage. I think an outside party encouraging assistance is important. He could also "participate" at med time. Still, I think a reminder of how good he feels when the medication is correct is worthwhile.

Melinda

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Controlling medication and "giving up control" can be a huge issue! Using a "pill minder" is helpful... I found one that not only has the days of the week on it, but is divided into additional compartments at 4-hour intervals.

Jim also used an electronic organizer ("Palm Pilot") with an alarm settng on it to remind him of the appropriate times to take his meds... HOWEVER... sometimes he would turn off the alarm without taking it and then wouldn't remember whether or not he took it, so a HUMAN BEING really is more foolproof.

Hope you can convince him that the medications themselves can cause "fogginess" and that the administration of the meds at the right time are critical for him!

Sending you wishes for continued success in your battle! Sandy

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I agree on everyone, just put his pill on those pill organizer and put it next to him. Do not put the entire bottle. They have one the comes with Mon-Sun with time on on each holes. If he missed a dose you would know and he takes too much you would know. Better safe than sorry. God Bless

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Thank you all for the really helpful advice with ways to improve how we administer Dad's meds. I really do think it's a control issue with Dad. I guess it's hard for someone who has been able to do everything for themself their whole life to hand over control. Not to mention, when he was diagnosed with the brain met, he was told he couldn't drive - that was bad enough!!

ztweb: WBR is whole brain radiation...should have spelled it out atleast once...sorry! :)

Thanks again everyone. :)

Sherri

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