Dad with sclc

[Guest tweety5476]

I'd like to introduce myself to you. My name is Star and I have a father who was recently diagnosed with sclc in January but also had a biopsy that showed met to liver, two spots 1.5 cm by March. He was then put on chemo meds, carbo and taxol and ended up in the hospital with blood pressure and sugar shooting thru the roof. I read all of your posts until 4:30 this morning and realize this is incurable. Dr. says chemo may give my dad an additional three months. My dad is 71 and has been leading a very active life. Works at the YMCA three days a week, until his chemo, goes to the movies and out to eat. I am his only daughter and I am having great difficulty accepting all of this even though I suspected it months ago. Trying to get my dad to get a second opinion seemed to aggitate him and finally I had to take him to his oncologist, which he never saw til March. I had called the Dr. and asked if he had told my dad and the doctor said they let the patient pretty much ask the questions. My dad didn't understand the seriousness of the situation and therefore did not know what questions to ask. I made an appointment last week and made the Dr. tell him he was stage IV sclc and had to question the doctor and have him talk to my dad like a real person instead of the medical mumbo jumbo my dad didn't understand. After the first chemo my dad said no more, which is fine by me as I feel it is a personal choice. I did feel however that you need all of the information in order to make that choice. I think it was such a shock to him, it was hard for him to comprehend all of it. So when he want to talk about it, I try to give him the info. He has decided to do the chemo again. I am really terrified after this last chemo treatment that sent him to the hospital of what will come next. I don't mean to ramble, but I just need someone to help me help him. Can any of you?

Thank you in advance,

Star

[jamie]

Hi Star,

My Dad has NSCLC, but I think what your looking for is advice in general. I think as long as your Dad understands the seriousness of this all, and comprehends everything explained to him, he will make the right choice for him. Make his doctors explain, and if hes not getting it.. have them explain again...and again. In the end you just have to support him, whatever his choice may be. Keep your dad infomed of what may lie ahead, and he will make his choice. The best thing for you to do, i think, is be there for him when he needs you. I dont know much about SCLC, but remember that there is always hope. No doctor can tell you how long a person will live... if you need anything feel free to PM me... Im a good listener.

Jamie

[Don Wood]

Hi, Star! It is super that you are being your dad's primary caregiver and advocate. Each patient needs such a person. If you ask about longevity, you will get statistics, and old ones at that. Each person is different and new discoveries continue to be made. Hang in there. There is always hope. I'm glad you dad decided to try chemo again. It's best not to read much into his initial reactions to everything, and to wait and see. He is very scared and very tired. And men are notorious for not wanting to be fooled with, not asking questions, and making snap judgments, etc. You can be a great help to him, as you already have been. Keep us posted and let us know how we may help you further. Don

[Margaret]

Hi Star,

You are right, it is a shock and it is frightening, plus it is difficult to make decisions under all that pressure and emotion. It is good that you are there for your Dad and I am glad that he decided to try chemo again. There is always hope and your Dad needs to see that in you and in his doctor. We will all be here for you, so keep us posted and we'll pull with you and your Dad every step of the way.

Blessings,

Margaret

[S. Jane]

Hi Star,

My Dad (79) also has SCLC and has completed his chemo treatments and achieved complete remission. I know it will come back, but after a rough battle, he is having some good days now. When Dad couldn't handle the chemo, they decreased the amount given to 75% and that worked ok with him. Your Dad had a tough time after the first chemo, perhaps your oncologist can do something - ie., change drugs, lower dosage etc. It sounds like your Dad needs you as an advocate. I pushed my Dad very hard to get a second opinion, because he wasn't going to a top place or a lung cancer specialist. He was reluctant, but went. If he didn't I was actually going to do it online, sending all the information and having an expert (Dana Farber) evaluate it. My friend who is an ER doctor said "get two, three opinions, be as aggressive as you can". The treatment ended up being with the doctor my Dad has trusted for 10 years, and right now for him I feel like it is a good choice. At times I have provided my Dad with questions that I felt needed answering, but in general, I have to say the doctor has answered the questions before asked. It does seem troubling that your Dad's doctor wasn't clear to your Dad. I don't know if this is typical or not, just thought I'd let you know our experience.

Gosh, rambled didn't I?

Hope I helped.

Jane

[Guest tweety5476]

Hello to all:

I just wanted to take the time to thank each of you that replied. It was very generous of you to take the time. I

I forgot to mention that my father likes go to the VA and since we live outside Houston, I have been trying to get him to MD Anderson, for a second opinion,but he refuses, says he has already had five opinions at the VA. Initially, he was told he just had cancer in his lung and they would just go in and section him, then he had a pet scan and the day before surgery they decided to biopsy his liver as something was showing on pet scan, which they did and on March 30, his 71st birthday, they (Pathologist) called and told him that in addition to the lung cancer the two growths on his liver were cancerous. My father thought that because they decided not to do surgery, this was a good thing. (I guess in a way it was) Finally after his first chem, I decided that someone needed to step in and get the whole story. Unfortunately my father is from the generation that just goes along with their dr. If any of you have first hand knowledge, which I am sure you do, could you give me some idea of what to expect? Doctor said he had 6 mo to a year. What do I need to watch for, outside the obvious. I know these are difficult questions and you have probably answered them a thousand times.

I am the Mom to three children, two grown and a handicaped little girl, Ashley who is 11, so I have been a caregiver for a long time, and I have had to research many things regarding my daughter and her condition and I have had to research the laws just to get my child educated so I am not above looking and searching out information.

This morning when my Dad stopped over I talked a little about this with him and told him he was probably in for the fight of his life and that he needs to understand that and give it his all, and that we would be right there beside him every step of the way. He may not make it but we aren't giving up without a FIGHT!!! I love my dad so totally and can't imagine my life without him as I am sure all of you know the feeling too well.

Thank you for listening to my ramblings and your kind anwers.

Hugz,

Star

[MO_Sugar]

Star,

DO NOT PAY ATTENTION TO STATISTICS! According to the "statistics" I died 3 months ago (or longer). They are old, out of date and mean very little today. As long as your Dad is breathing there is hope! SO many things have changed. I was dx'd with sclc last year. Had chemo and went in to remission, had pci and came out of remission with mets to lymph and liver and have been on a new round of chemo since but I AM STILL HERE! I enjoy every day I have and live each day as if it is a gift (which it is). There is treatment for your Dad if it is what he wants.

You will be in my prayers,

MO

[mhutch1366]

Star,

Mo is right about statistics. I should not have survived beyond summer 2000. But I am here!

Your dad is fortunate you are his daughter and his advocate.

Get a few ideas from his oncologist about options, chemo and surgery, and see what he wants to do. You need to know the facts as to what is available, and he will make an informed decision from that.

It is important that he feel part of a team with his oncologist to fight this beast. If you are not comfortable with the dr, find one you are comfortable with.

Prayers, always.

XOXOXOX

MaryAnn

[MayFrog]

Hi Star, and welcome. D**m statistics!! They do more harm than good in most cases....this disease is as individual as your dad....some things will apply, some won't....you just can't fit it all in a neat little box. Some say that SCLC is incurable; I tend to think of it as a chronic disease that I have to LIVE with.

Most importantly, he needs the will and feistiness to be a survivor. Secondly, he needs family support (which evidently is NOT a problem ). Third, a medical team that he trusts and has a good rapport with. This goes from the Oncologist on down to the secretary. He needs to feel that they all are looking out for his best interests while being honest and open with him; that they explain everything to him in ways he will understand..from blood tests to chemo options.

Since he had a bad reaction to his first try at chemo, my guess will be they will either lower the dose or try a different combo. Chemo works very well on SCLC, so it's worth the trouble to try and find a combo that works for your dad.

It's great he has you in his corner...look forward to hearing from you on your dad's progress....you're in my thoughts......Mary