I have been trying to research the drug decadron (dexamethasone) but am very confused about all the conflicting information. My mother was diagnosed with extensive small cell lung cancer (stage IV) nine months ago. She has been getting a lot of bad days lately so the hospice nurse suggested she take decadron.
She is a totally different person in just a short period of time (two weeks). She says she feels really good but understands that she is dying a her days are numbered. Does anyone out there have any experience personally or as a caregiver with this drug? I really need some real life experience infomation!
Thanks in advance for anyone who can help me.

I have been trying to research the drug decadron (dexamethasone) but am very confused about all the conflicting information. My mother was diagnosed with extensive small cell lung cancer (stage IV) nine months ago. She has been getting a lot of bad days lately so the hospice nurse suggested she take decadron.
She is a totally different person in just a short period of time (two weeks). She says she feels really good but understands that she is dying a her days are numbered. Does anyone out there have any experience personally or as a caregiver with this drug? I really need some real life experience infomation!
Thanks in advance for anyone who can help me.

Hi SherryAnne: The following is "real life experience information" I was my mother's care giver and gave out all her medication's including Decadron which is a steroid to reduce the swelling from her brain mets. She was diagnosed with stage 4 SMCL in August 2005 and passed away December 2005 the Dr said 4 months and that was all she had.

It was a real touch and go thing with the Dex she started with 2 -4mg tabs= 8mg a day and seemed good for a while then they bumped her up to 2-4mg tabs 3x day= 12 mg this is when she really changed and she would sometimes be really shakey and confused. As she progressed with her illness they also kept upping her Dex and she did not like how she would feel on it after awhile. She could no longer walk once she started on those either. We would ease up a bit on it like maybe 1-4mg tab-x3day and she would be good for a day and then all of a sudden she was having total body tremor's and we would be off to emergency and the Dr injected her with such a high dose of Dex I couldn't believe it so we were instructed to keep her on 8mg Dex (2-4mg total daily for head swelling.

She was never able to wean down on the Dex once she started, mind you she had many brain mets and as they grew she would not function properly without Dex but they did not improve how she felt day by day. She was also taking 600mg Advil every 4 hours along with Dilaudid for headaches. Also 10 mg Metoclopramide for nausea 1/2 hour before meals and Lorazapam up to 4-6 times a day for anxiety. I was so exhausted looking after my mom as she was totally dependent on me and at the same time I should have been digesting losing her but I never had time to do so and when I did I was trying to get some sleep in as well. It is just so sad to see our parents go through this, I also looked after my father in 1993 when he was dying of multiple myeloma (sp?). I have 3 other sibs who did not participate in either's care as they "couldn't deal with it". I will think of you with your mom as you proceed with the care of your dear mom. It is a tough road. (((hugs)))

My dad has been on the Dex for 2 years. It is not a drug you want to be on long term unless you have a terminal illness. It breaks down your muscles, so eventually your muscles waste away, HOWEVER, the benefits outweigh the risk in my opinion because if it makes them feel better for any length of time it is worth it! My advice is continue the Dex. Hope this helps.:)

Suzanne

Yes, I agree Sherry Anne Dex does have it's place.People with all kinds of other illness take it for years as it is used for swelling reduction. I just know for my mom's brain mets it was not a long term fix and had to be monitored almost weekly, but then the brain is a much more sensitive area. The good it does for many ailments far out weigh the risks.

I was only telling my mom's story, my intent was not to give you advice either way. That would be from your mom's Dr and your mom's decision.:o

I agree with Suz...
Dex is better than no Dex when it comes to that time. I have learned that no matter what dosage they give in the end stages, it's not enough. Bud, my late husband, was on that for a long while. He had to take that before he got his chemo. Usually, it goes along with some chemo agent. What else do they have your mom on? Bud had stage 4 nsclc, but some of the side drugs are common with both small cell and non-small cell lung cancer. Bud could not sleep for two days after the Dex. Then, he started to dehydrate. I think their bodies go into hyper-drive and finally just collapse. But, that was the time he usually had some energy and wished he could be on it full-time.

Keep us posted.

Love, hugs and healing and prayers for Southern Indiana

jan

I want to thank you ladies for helping me out with this DEX issue. I haven't had time to get back to the boards until now. My mom was having a side effect of extreme thirst from the dex so they decided to cut her back from
8mg a day to 4mg a day. However, as soon as I did that, she was in pain again and felt lousy. So we are back on the 8mg again. All of you were right on target telling me that the benefits out weight the side effect. I really appreciate your help. Sometimes I just can't figure things out and don't have anyone to ask for help that has gone through this. Since my mom's cancer has spread to her brain (and everywhere else in her body) things have been very difficult for me. She THINKS she is fine, but she just has no idea of what she's doing sometimes. I found out it is pointless to argue with her or try to explain anthing to her. This is really driving me NUTS! I am so frustrated I don't even know what to do anymore. :confused:
Thanks again for everyone's help.

we are here for you. Hang in there. It is just such a tough journey. Like me, once it is over, we feel so drained emotionally and mentally mostly. Physically we expect it, but the emotional/mental toll are more than we can imagine. Any time you come here, someone is always ready to help. Maybe they do not know the situation, but the love, support, and care are there.

Take care and love, healing, and hugs....

Jan

Thanks, Jan. Sometimes I just don't think I'm going to get though all of this. This has been such an emotional drain worrying about my mother constantly.
It has been difficult on each and evey family member as my mom has lived with us now for the past five years. Personally, most of the time I feel like I belong in a psychiatic institute. I am just so sad :( Take care and thanks so much for writing back to me. My prayers are with all of you.
SherryAnne

Sherrie,
some of us were where you are just not that long ago. Life takes its own twists and turns. We cannot direct the path, but we can learn and grow from the journey. PLEASE, any time, you come here and holler HELP you will find a willing hearer....honestly, after loosing the love of my life, the center of my universe, my best friend, partner in crime and hubby....I just wanted to curl up and die. But, God saw that it was not an option. DANG IT. So, here I am, a feisty 48 yr old widow ready to take on cancer and another Relay for Life.

People, RFL is the way to get funds (money) to the place of research and cure. Do not ever give up the fight. You and I might be next. Stats show that is a HIGH probability. I do not mean to be self-defeating, but in all honesty, that is how I think I will die. Cancer. In the meantime, I will do all within my soul and strength to make a difference. Today, please pledge yourselves, and do the same.

God bless us all and have mercy upon our poor, mortal bodies.

Love and healing from So. Indiana...
Jan