Starving for Info on Chemo

[WhenStars]

Hi Everyone...

This is my first post, although I have been browsing the board since my father (64, otherwise healthy) was diagnosed with stage IIIB lung cancer almost four weeks ago. As all of you know too well, this has been a miserable month.

Last Friday (10/29), my father had his first chemo treatment. Although both my mom and I took very detailed notes during the visit, we still have many questions about his treatment. The current plan is to do two treatments of Carboplatin and Paclitaxel - 3 weeks apart - followed by weekly chemo and radiation 5x a week for six weeks.

Right now, I could really use some help understanding the side effects of chemo (and duration of those side effects). Understandably, my father feels awful, and he is anxious to know when he will start to feel better. By "better", we mean less nauseous and less fatigued etc. I tried to explain to him that 10-12 days after chemo, his white blood cells would be at their lowest levels, and he would be the most tired. Of course, my information comes directly from medical literature and not personal experience.

It would be so helpful if you (both those afflicted with the disease and the caregivers) could share your chemo/ chemoradiotherapy experiences so that I can pass them on to my dad. I am confident he would have more peace of mind if he could hear from other people.

Thanks so much for your help,

kam

[kimmek]

Hi Kam

First let me say welcome. I am glad you found us. This site has been a life saver for me many times, you will find warm caring people, and most important, people who have real answers, because they have experienced the same thing.

My mom was dx similiar to your dads, the only thing different really is we did the weekly chemo along with 33 daily radiation treatments, and after a 3 week break started the every 3 week doses. Actually my mom is there right now having her last treatment.

She had a fairly easy time with the weekly chemo, just maybe 2-3 days achy,tired a bit nauseated, Now the every 3 week ones are much much stronger doses(not sure about your dads) and everything is worse but not unbearable. and this lasts about 5-7 days. Mom has been really lucky and i pray that your dad with have the same and handle all the treatments. I have heard mom say many times the radiation was far worse than the chemo. about 1/2 way thru her esphogus started burning and spent 6 weeks or so unable to eat/drink. you have to be very careful and not get dehydrated, then can also give fluids with the chemo if this happens. Pretty much they have pill for just about every side effect you can get.

Keep us posted on your dad and I will add him to my prayer list.

God Bless

Kim

[cindi o'h]

Hi Kam,

Sorry about your dad.

The treatment plan that your dad is on is similar to mine except I had the rad/chemo first and then the cycles of chemo to follow...

The side effects that people get are individual as individuls themselves, I think. It has been so long for me that I hardly remember...Thank God. But, I do remember it was NO Fun. And that what helped me to get through it was "one day at a time" thinking..."staying in the moment". Getting through whatever came up.

I am glad that you will be there for your dad. It will be a comfort to have you there. He won't feel like doing much most of the time (if he is like me) but some slow, easy activity is good when he is up to it.

Lots of water....and I am glad you are there for him through his appointments. Anything that doesn't sit right with you, don't hesitate to call the doctor.

Cindi o'h

[Frank Lamb]

Hi Kam,and welcome.I had a different regimine of chemo than your dad is having.I had carboplatin and taxol.Ihad chemo every monday for 7 weeks while also having radiation 5 times a week for the same 7 weeks.You will find that everyone is different & has different side affects.Although almost everyone gets naseau (sp) sick at stomach,fatigue,etc.Not all have hair loss.I always got sick 2 or 3 days after chemo,lasted a day or 2 & then felt better til the next chemo.Once all finished the chemo keeps working in your body usually 4 to 6 weeks.Then there should be gradual feeling better.Took me a long time to feel better.Both the chemo & radiation damage good cells as well as bad ones.I had allergic reaction to chemo(that was bad)but once it was all done & given some time I now feel pretty good.The whole thing is a pain in the dupa but it is doable and the result can be very favorable.There are lots of knowing and caring people here & you will hear lots of others experiances.

[Mr Ry]

Kam,

Welcome aboard. I can say this about chemo and radiation. Everyone reacts differently. I started with radiation every working day and low dose chemo once a week. The radiation made my throat sore, but manageable. I had slight nausea, but never vomited. They always gave me an IV of something to prevent the nausea. My worst days were the second and third days after chemo. I always recovered by the fourth day. Although never back to the point I was before dx. This went on from June through September. October through until March I had various chemos. I always recovered from each treatment but never back completely. It eventually wears you down. Down begins to look like up.

Watch out for fevers and keep an eye on blood counts. When I first started full dose chemo my blood counts got really low. I ended up in the hospital for 5 days getting ride of an infection and upping my blood counts.

Drink lots of water before and after both radiation and chemo.

I have been on Iressa since March of 2002. I still get fatigued in the middle of the day. I used to nap everyday for an hour. I do not sleep any more in the middle of day, but have to lay down for a while.

I hope I have given you something to take to your Dad. My best to you and your family battling this beast. John

[chloesmom]

I too felt my worst days were the 2nd and 3rd after chemo. I think this is a time to really try to eat right--plenty of protein, fruits and vegetables, get plenty of fluids to avoid dehydration (dehydration is yucky!), and rest, rest, rest.

I took the anti-nausea for three days faithfully following chemo whether I was sick or not and I think that prevented a lot of my nausea. I scheduled chemo for Thursday, and worked most Fridays, felt bad on Sat and Sun, and went back to work on Mon. I even had a 6 day business trip right in the middle of chemo, and while it was not pleasant, it was doable.

Any problems, talk to the people at oncology. They are there to help you get through this with as little discomfort as possible, and they were always willing to help me with any problems I had.

As far as recovery time, everyone is different, but I started feeling markedly better by the time I was two weeks out from my final chemo. Just knowing I didn't have to do it any more made me feel a lot better.

Good luck,

Cindy

[WhenStars]

Thanks to all of you for your posts. What a help!!

Much as I had assumed, everyone reacts differently to treatments. I am going to print out everyone's responses so that my dad will be able to read through and get a sense for the wide range of reactions. (It might even motivate him to start "talking" with people on this board.)

A second point: several of you mentioned that you had continued working throughout the treatment. Right now, my dad is not working. He works in finance, and his job is both incredibly high-stress and requires a lot of air travel (usually in 3 cities a week). He is currently on disability while he goes through treatment. In all honesty, he is not well enough to work, and requires frequent naps, etc.

I am worried that he went from being "well", to all of a sudden post-diagnosis being very un-well. (We found the tumor after he suddenly came down with pneumonia.)

Should I be trying to motivate him to get a little more active (light exercise with a physical therapist) or keep busy in some other way? I don't want to be pushy, but I want to keep him strong and focused.

Thanks,

Kate ("kam" are my initials)

[chloesmom]

Kate,

I would guess that if your dad has a high stress, frequent travel job, he is probably best off at home while undergoing treatment. In my case, I wanted desperately for things to be normal, so I went to work as much as I possibly could so that I could feel 'normal'. But, I work about 10 minutes away from my front door, can leave to go home sick any time I want, and have been working here for 25+years with mostly the same, totally understanding people who would not be at all upset if I took sick time when I needed it even if I said I would be in that day.

I also was 47 years old at diagnosis, and if your dad is older, that could be a factor for his being all worn out.

That said, though, I don't think some light to moderate exercise ever hurt anyone. Just walking briskly, preferably outside in fresh air, a couple of miles a day would do him a lot of good, I would think. Fresh air and exercise improves your mental outlook, improves appetite and promotes peaceful sleep, all very important in waging a battle against this formidable beast. I don't even really think a physical therapist is necessary--just a little encouragement and motivation would probably do the trick.

Hope this helps.

cindy

[cindi o'h]

Hi again Kate

I am not an oncolgist. I re-read the tx plan for your dad and I don't think I have ever heard of that one...meaning, the chemo cycles BEFORE the radiation/concurrent chemo? Either that or I haven't been paying attention...

Anyone else?

Cindi o'h

[WhenStars]

I would love to hear other people's thoughts on this too. Did anyone else start this chemo first and then chemo/radiation?

We got several opinions post-diagnosis from some top cancer centers on the east coast, and everyone agreed with this treatment.

[WhenStars]

KatieB,

I think you're right about the two kinds of sickness: the physical and the mental. I am sure this has been a tremendous and terrifying blow to my father.

Last night, he seemed hopeful and optimistic, and he was feeling a bit better. He also was eating a bowl of ice cream when I called - so his nausea must be under control! Unfortunately, my mom seems to have come down with a cold (no sleep, lots of stress), and so we need to quarantine her so she doesn't get my dad sick.

Lots to think about - but I already feel encouraged from everyone's posts yesterday.

Thanks so much,

Kate

[Herman]

Hello, and welcome to this wonderful place! This website has kept my sanity MANY times! As my father has just begun chemo too, I thought I would offer you his experience. His is stage IIIA NSCLC, and is getting carbo/taxol once a week for three weeks, then the fouth week off. He will do this twice. After the chemo is complete, he will undergo 15 minutes of radiation every day for 5 weeks. The oncologist told us the biggest side effect of this type of chemo combination would be fatigue and hair loss, and that nausea would not be a factor. They give my father anti-nausea meds before his chemo, and also gave him a prescription for them "just in case" but the onco did not think he would need them. As a matter of fact, my father usually eats his lunch during his chemo! He has not lost his appetite, and is doing very well in that respect. After his first chemo last week, he felt great until 3 days afterward, then it hit. He was so fatigued and weak he just sat around in a recliner all day. My father is a very active man, even with being on oxygen 24/7, so for him, we knew he had to be weak. Then he had his second chemo Tuesday of this week. He had a reaction to the "pre-meds" and turned beet red on his face, but the onco office said that is normal, and a lot of people get it. He felt no worse after the second chemo, and on Wednesday morning told my mom he felt "really, really good" and that he had not felt that good in so long! He even went to the gym yesterday and worked out (a light workout, but none the less, keeping active!) Now today is Friday, three days out from his last dose of chemo, and since it's early in the morning, I have not talked to him yet today. But I am wondering if the "three day" out from chemo will make an appearance again. But if it does, at least we know what to expect from now on, and how he will react and when. I just hope the "good days" will outnumber the bad. I have read on this board before about people getting chemo and feeling better than they have in a long time. But keep in mind, my father has an EXCELLENT oncologist, and that makes all the difference in the world! They make sure he has all the medication for anything he will encounter, and always tell my mom that if anything should come up that is not normal, or if she has any questions, to call anytime of the day or night. They told her not to wait, that if she has a question at 2:00 in the morning to call, because they have someone on call 24 hours a day, and they would rather know right away if there is a problem so they can get on it as soon as possible to prevent anything getting out of control. I wish you dad the best of luck, and even though my dad got down at the beginning, I kept telling him that feeling bad would not last forever, and that we know when the chemo will stop. He is in much better spirits now, and very "uplifted" since he started to feel better. He has told us before that he could feel the tumor in his chest, ecspecially when he coughed. But after the first chemo, he said that it was not hurting him anymore! A great sign! Also, as you suggested, a physical therapist would be a great idea ecspecially if he is unsteady on his feet from being weak. I know under my parents health plan, a physical therapist can even come to the house if the doctor orders it, so check it out. That way, he would have to get up and do some exercising if they come to his house! To keep mentally and physically strong during this whole experience is definately a challenge, but as I found out, as you get further into it, and the more you understand, the easier it is for both you and your father. Best of luck to you and your family!