NEW - Support for my dad

[Guest]

My dad, 66, was recently diagnosed with stage 3b nslc and now has been upgrade to stage 4 with brain mets, tumor size of lemon in bronchi tree wrapped around esophogus nerve and tumor in right lung and in surrounding lymph nodes. Current sypmtoms are wheezing, hoarsness, and some fatigue. He has had 4 double radiation treatments so far. (chest and brain).

My dad lives on an island and likes it that way. He is pretty ignorant to medicine nor really wants learn about his disease, though he wants to fight it. (his biopsy was the first time he has been to a hospital) I'm trying to obtain as much info as I can for his care. He is currently flying off through "Mercy Flights" every day for radiation. Since he has only had 4 treatments he is not feeling any side effects except for some fatigue. He knows he will be experiencing pain next week as he progresses eating and swallowing. I have a step mom who is unstable mentally (alcoholism) and is not caring for him.

So my questions for now are....What type of care will he need during radiation? He has 12 more to go. After that he will be doing chemo. The doctor said 5 days a week for 6 weeks. Wow that seems like alot. I'm not seeing anyone on this website that has had that much/often. What type of care/observation will he need with that much chemo? I live 3 hours away and need to make some arrangements. Been lurking for a week now and received some great helps. Thanks for listening.

[carolhg]

Please ask his radiology oncologist for something to ease the esophagus pain. My oncologist gave me a liquid mixture that kind of numbed my throat and chest as I swallowed it. I do not know what it was, but I do know that it contained mylanta and benadryl. I never had any problems with my esophogus as I have read that others have had. Will keep you and your dad and family in my prayers.

Carol

[MilliBr1]

Welcome to the board! Some people are fortunate and don't have many problems with esophagus pain. Some are like my mom who could hardly eat or drink. If he has problems keep a close eye as dehydration moves in quickly.

[Ry]

The five days a week for 6 weeks sounds like a radiation schedule rather than chemo. He will possibly experience fatigue and flu like symptoms following chemo when his blood counts dip. He will need someone to make sure he eats and drinks so he doesn't get dehydrated. My husband only had 2-3 sick days following each treatment. Good luck to you and your dad and welcome to the site, we're glad you found us. Ask all the questions you need to--also there is an Ask the Experts Forum where you can ask medical questions.

[Don Wood]

Lisa, tell your dad that knowledge is power -- the more we know about our disease, the better able we are to fight it and succeed. Don

[bethluvswill13]

Lisa,

My dad takes radiation 5x weekly and chemo 1x weeks weekly and currently he's had 38 radiation treatments and 6 chemotherapy. He would've have 8 chemotherapy treatments but has had some complications not related to treatment. I have seen my dad become weak, short of breath, very hard swallowing, no appetite,coughing until he vomits. I know these are very scary symptoms but your dad may respond differently. I think the best thing would be to mention these questions to his doctors and let you and your dad decide what you think will be better. i hope this helps...just remember everyone responds differently.

P.S. His symptoms just started getting real bad 3 weeks ago.

[Ladyintheglen]

The mixture Carol is talking about is called both Miles Magic and BMX. It is a mixture of Benadryl, Mylanta and Xylocaine in equal parts. My husband needed it in order to eat or drink. Your father will need to be very careful eating and drinking while using this as the possibility of choking rises with the numbness. I always told my husband to remember to take small bites of food and small sips of liquid.

Hope this helps. My prayers are with you.

Cheryl

[J.C.]

Lisa,

Welcome on the forum.

You already got answers for your questions.

On the island you father lives, does he has

friends that could look after him in case he

needs a helping hand?

Keep us posted and again.

Welcome

Jackie

[Guest]

Thanks for all your posts. I'm learning alot here. This situation with my dad on the island is disturbing to my sister and I. We are trying to prepare ourselves getting to and from the island for possible future care. Of course he won't come off for care, but maybe when he starts experiencing some of the side effects he will change his mind and live with me for awhile or at a care center around the hospital. I have mixed feelings with my dad because I see sites like these and you all are gaining knoweledge and support and he chooses to be in ignorance for the most part. I know he is really scared and I'm trying to respect him through this.

[eppie]

Good luck with your dad. Hopefully he'll come around to the off island living benefits. The advice here is delivered with kindness and respect. Please take care of yourself. This is a hard road to ride on.

Much love,

Eppie

[Leslie221]

Welcome.

Radiation is a daily thing for me. I'm almost done (7 or 8 more!) I have a lot of fatigue now, try to get stuff done in the morning, so I can kick back the rest of the day. I take an hour nap every afternoon and it really feels good and gives me a second wind for the evening. Strength and energy will come back later, so I just go with the flow and make the best of it.

My mouth and tongue and throat have begun to be very dry this past week and my taste buds have lost their edge. I find I have to keep my mouth moist all the time. Really! I drink bottled water constantly and even keep a bottle on the headboard so I can drink in the middle of the night. Your dad really needs to have constant access to water or juice or Gatorade. He'll feel better and have fewer uncomfortable side effects. Can dingy step-mom be counted on to help in that department? Is there a neighbor close enough to drop by casually once a day and just see that he is drinking enough?

Hang in there. Keep us posted. We're all rooting for you and your dad!

Leslie

[bunny]

welcome. I have no experience with radiation or chemo, as my mom only had surgery and Tarceva, but I agree with JC - see if you can rally some support for him where he is.

sorry you have to be here.

xoxo

amie

[cindi o'h]

As a lc pt myself, I remember those days when all of it was too overwhelming and I didn't want anymore information in my head as I had enough to deal with already. Maybe a part is denial. Much is a self protection mechanism.

Thank God for family members. Thank God for daughters like you.

I am sure he is doing as much as he can right now. If that means the most he can do it get to treatments and back again.

All the above advice is good. You are doing a good job. It is hard to know unless you are exactly in his shoes. Glad you are here to ask. I am glad if I can help you.

Cindi o'h

[Treebywater]

I'm sorry I'm so late in saying so, but welcome to the boards and I'm sorry your Dad and your family are going through this. Don't forget, even as you encourage your Daddy to be more proactive to love him where his is.

We'll be here to root you and him on!

Val