Hello....My dad dx with NSCLC

[DianeR]

Hi...my wonderful dad was dx with NSCLC, Adenocarcinoma Stage IV. These past 4 months have been a nightmare to me. I think I am finally coming to grips that this is for real and I am sooooo scared. He has always been so healthy, which I have been so thankful for and feel very lucky. Before he was dx he was swimming 1 mile 3 times a week. My dad is 75 years old.

In Dec. 03 they thought he had pneumonia and was given antibiotics and sent to have a chest x-ray. The pulmonary dr. saw something he didn't like and sent dad for more scans and then a biopsy. The bad news...NSCLC Adenocarcinoma Stage IIIb or IV. We were devastated.

He started chemo (Carboplatin & Taxol) 2/17/04. He has now taken 4 cycles of chemo and has had a really rough time. He had pneumonia in

March and had to be hospitalized. He gets severe bone and joint pain after each chemo that last almost through until the next chemo treatment.

He gets very fatigued and was getting extremely short of breath. He is getting Procrit shots to help this and I believe they have helped to some degree. The shortness of breath is much better. It just seems he just doesn't get many days he feels good.

He is such a wonderful dad and I just love him so much! They live about an hour away and I am able to go to all his dr. visits and chemo treatments. I take notes daily on how he is feeling, his meds he is taking and any other things I feel should be written down. I take my notebook to every dr. appointment and take so many notes the drs. look at me funny! I use these notes to refer back to when needed. This has helped me tremendously.

He is scheduled to have new scans done 5/12/04 and 5/14/04. I am hoping and praying that things have greatly improved.

I have read the posts on this site often and see how you all help each other with info and support. I need all the info and support I can get. It has been 4 months since dx and I still fall apart every single day!

Thanks for listening and I will be there for you all also.

Diane

[MurielK]

I was on carbo/taxol (four cycles, 3 weeks apart) last fall and had the same symptoms as your dad. They gave me decadron the night before (pills) each treatment and as part of the cocktail. When I reported the terrible bone/joint pain, they had me taper off the decadron and take percocet for the pain. I used a lot of percocet, but it helped. Like nausea, I think you need to get the pain before it gets a good start. Good luck. I did survive the treatment and your dad will, too.

Muriel K

[dadstimeon]

Hi Diane, Sorry to hear about your father. This is a very stressful time for all who are involved. This is the best board with the greatest people for help and support. Stay with us. Stay focused and positive. Take one-step and one day at a time. Learn as much as you can. Be pro-active. Hope this helps. My thoughts and prayers are with your father and you. Peace, take care and God Bless. Rich

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[jamie]

Hi-Im so sorry to hear about your dad, but you seem to be doing all of the right things for him. My dad also has nsclc, stage 3b, but is soon to be downstaged, (thank god). Chemo was not so bad on my Dad, but bad enough. By keeping track of everything for your Dad, Im sure that you are making sure everything is going in his best interest. My Dad dosent even know what kind of chemo he is on, and wont let me come to his appts! Sounds like you guys have a great relationship, and your doing a great job being your Dad's advocate. Keep up the good work, and the best of luck to you and your Dad.

[ginnyde]

Diane,

Welcome to the message board no one wants to belong to.

My husband took Celebrex during his Carbo/Taxol treatments. He never had any joint pain. He continues on Celebrex since it appears to have some tumor reducing or stablizing characteristics.

Might want to check with your Dad's dr. about Celebrex.

Ginny

[char1048]

Welcome and sorry to hear about your dad, I am fairly new to the board and have found great support here and you will also and check out the chat also, there are a great bunch of people here. So post often and prayers to you and your dad. Charolette

[Don Wood]

Hi, Diane, and welcome! My wife's case (see below) is similar to your dad's, and she is a one and a half year survivor so far. So take heart! Sounds like you are being a great help as a caregiver to your dad. Each patient needs that. Hang in there with us. Don

[DeanCarl]

Diane,

Sorry you had to seek us out, but VERY glad you found us.

Yes, this IS a scary time for you and your family. But there's something I've learned. I can get through almost ANYTHING as long as I don't have to do it alone. And you don't have to do this alone. There are a TON of folks on this board who've fought this battle. All ages, all types of dx's, all types of therapy. No matter what happens with your Dad there will be somebody here who has had the same experience and KNOWS exactly what you and your Dad are going through.

Stick close and let us know how things are going.

Dean

[Angie Daughter of Bill]

Welcome to the board. My Dad is also stage IV and was diagnosed around the same time as your Dad. Like you, I attend every appointment with my Dad. I am his caregiver, as him and my Mom are divorced. I also still fall apart. It is hard not to. Hanging out with all of the wonderful caring people here makes this journey a little easier. I hope you stay with us and post often. Have a blessed day!

Angie

[DianeR]

Just wanted to thank you all for the messages. It really helps to get a feel how other people are handling the same situations.

Don, I did notice that Lucie's dx is very similar to my dad's. I have been reading your posts for a while now and it gives me great hope to see she is an 18 month survivor! I am so happy for her.

Muriel K, I would like to find out more on your treatment for the joint/bone pain. My dad too takes decadron before chemo, with the chemo, and 2 days after chemo. He is also taking Percocet. I was curious why they decreased decadron? I would be so thankful for any info you could give me, as the pain you had sounds like what my dad is going through.

Ginnyde, thanks for the info on the Celebrex. We have a dr. appt. on Tuesday and I will definitely ask about this helping my dad.

I just really want to thank all of you. It feels so good to have people so friendly and willing to help with info and support. I just want to do everything that is possible to make my dad feel better.

Thank you, Thank you, Thank you!

Diane

[MurielK]

Hi Diane

I think it's every bit as hard to be the loving family-member or friend as to be the patient. It must be terribly hard to stand by and watch all of this happening.

As I understand this, and I don't have any medical training, it is better to taper off decadron than to abruptly discontinue it. The first time I took it, I also took it for a couple days after chemo. I was led to believe that the pain was related to the decadron and after that, I tapered off over more days - chemo day - lots at the office; days 1 and 2 post chemo, no decadron; days 3 and 4, 2 tablets (5 mg, I think); days 5 and 6, 1 tablet; and day 7, 1/2 tablet. This didn't solve the problem, but it seemed to help some. Downside of this was the increased appetite. I felt as tho. I needed to eat constantly.

I had chemo on Tuesdays and began taking percocet on Thursday, for about a week. The instructions were: 1 or 2 tablets every 4 - 6 hours as needed. I felt as tho. I was taking a lot, but looking back over my records, it was only 4 or 5 tablets a day. I slept a lot the first week after chemo - due to the Kytril and then Zofran, compazine, percocet, and ativan (1/2 mg. as needed for nausea).

FYI: My reactions to the chemo were stronger each time (I had 4 treatments), my red and white blood counts, platelets, hematocrit and hemoglobin numbers got lower each time. I had almost weekly procrit shots from Nov. until mid Feb. and took an antibiotic as a precaution for 10 days after each treatment due to the low wbc. I'm 10 years younger than your father, so all of this may have been easier on me. Out of curiosity, where is he receiving treatment? My group of oncologists is near Fairfax Hospital in VA.

I hope this information helps you evaluate how your father is doing on these "poisons." Be sure that he starts the nausea and pain pills before those problems really hit him.

Best wishes

Muriel K

[MurielK]

Hi, again, Diane,

I forgot to wish your father good luck on his scans this week. I'll be praying for him. Be sure to let us all know the results.

Muriel K

[DianeR]

MurielK...thanks for getting back to me with the information on the decadron. Right now for pain my dad is taking 1 Percocet every 4 hrs. to 6 hrs. for the pain. This seems to be helping for the moment.

Muriel, you asked "where my dad was going for treatment?" My dad is being treated by a group of oncologist in Greenbelt, MD. I took him to Johns Hopkins Sidney Kimmel Cancer Center for a 2nd opinion and they felt at this time, his oncologists were doing everything they would be doing. So we are staying with them for now.

Thank you all for the information and prayers. I am very grateful to you all for the help I am receiving here.

Diane