I am new to this site

[Lynnie]

I'm new to this site and new to the world of cancer. I'm just looking for any and all help I can find.

My father was diagnosed on Nov 2 with Stage 4 lung cancer. He was 58 at diagnosis. We were told he had 4 - 6 months to live. He has tumors on his lungs, brain, spine, liver, abdomen and adrenal glands. Honestly they may have name one or two more but I lose track. He was living in CA and diagnosed at the VA hospital. He went to the hospital on Oct 30 and we had to wheel him out on NOv 5. He was unable to even get of bed on his own. I had him moved up to WA state where I live so he could be by family. He went to the hospital and stayed for 3 weeks. They did 10 days of radiation on his spine and brain tumors. What a difference that has made. He can now walk with a walker and is a lot more alert. He had one round of chemo and has a second round next week. Is this someone who can now live? I have a hard time believing he is dying especially with seeing all the improvements he has made. I don't knwo what to expect. Right now he is in a rehabiliation center as I am a single mother of a 1 year old. The center is talking about releasing him. I will gladly take him home with me the only problem is he can't do stairs and my showers are both upstairs. Will he continue to improve? Is he someone who will be able to work and live on his own again? Any suggestions on what I can do if he comes home with me? Thank you so much! Lyn

[Outrider1]

Lyn,

First off, cancer is not the "death sentence" that it used to be. I have a Dx of ext-sclc, the most aggressive form of Lung cancer. When I was diagnosed I was 49 years old, could not stand, sit, walk ,or lay down except on my left side. I could not take care of my personal hygiene or dress myself. I had met.s to left hip and femur, all the lymph nodes in the left groin, left 7th rib and cervical nodes, right salivary glands and nodes in the jaw, right adrenal gland, tail bone and L5 & L7 vertebra, left upper arm and axillary lymph nodes and a large mass in my right middle and lower lobes of the lung. I was in bad shape to say the least.

One hour after first chemo I could stand and walk, not well mind you but I could do it. It continued to get better from there to the point that I no longer need anything for pain except on a very occasional basis and then it is ibuprophen. I have some other issues going on with my head (ie. possible Multiple Sclerosis, still trying to work that one out) that keeps me using my walker when having to walk a lot (which I do for Dr. Appts at the VA here in Dallas). My quality of life is excellent at this point.

I will not ever intimate that your father will have the great response that I have had but I will tell you that with proper nutrition and care that it can happen. The many lovely individuals on this site will give you all kinds of advice on how to bring about good quality will undergoing treatment, and afterwards. They have been through it personally or are caregivers to those that are going through it. There is wealth of information here. And They don't mind answering as many questions as you may have.

I personally can help with any questions that you may have about the VA system especially on how to get things done and how things should be working and if I don't know, I can find out.

Another place that you can go to get some technical questions answered is

www.cancergrace.org.

That site is run by a bunch of very caring Dr.s who do their best to answer the technical stuff for us. They can't answer personal treatment related questions but they do a heck of a job answering the hypothetical and the technical. Dr. West (the Grand Pooh-Bah over there, lol) is a guest speaker here at lungevity and sometimes comes in for guest chats.

My best advice to you is concentrate on living, and the quality of the living. Be the strongest advocate for your father that you can be as you may have to fight to get what he needs.

As far as the issues of making it work inside the house, contact your states agency on elderly and disabled. They may have some programs to help modify your home to accommodate his needs at no cost to you. He is also eligible for travel re-imbursement pay from the VA and if he ever set foot on the ground in Vietnam, he is eligible for compensation for agent orange exposure. This will help in terms of independence for him or to alleviate an financial hardships you /he may be encountering.

And lastly, Make sure that you take some time for you and your child. That is just as important as anything else, sometimes more so.

Live, Love, make memories and come here and ask all you need to or to vent, if need be. Just know that you are not alone and we will do what we can to help you with this new journey that you are now on.

Oh! and remember to breath! Sometimes taking those deep breaths are the only thing that keeps me sane.

Dawn

[recce101]

Hi, Lyn:

It's impossible to compete with Dawn's absolutely marvelous response, so I'll just add my welcome and second the suggestion to visit cancergrace.org (GRACE, Global Resource for Advancing Cancer Education). Let us know what chemo agents your dad is receiving, and we can give you some good tips on dealing with side effects as they occur. Best wishes and Aloha,

Ned

[RandyW]

welcome and if your in Washington and near Seattle, Dr. West is working there!! Lung cancer is not a death sentence so forget about that 4-6 month thing they told ya!! We have members here in double digits, like over 10 years with LC!! Treatments these days, have come a long ways !! Hang in there and we look forward to getting to know ya a little better!

[Bud Baker]

Welcome, Lyn! Glad you found us.

[Lynnie]

Thank you so much for the replies. I know I still have a lot to learn and am devouring every bit of information I can find. He is my dear dad and I have to do everything I can for him. I have for the most part been incredibly blessed in my life and this is the first time I have been personally touched by cancer. I have know a few people who have fought cancer but nothing this personal to me. I feel there is so much to learn and like I am constantly playing catch up.

Dawn first thank you so much for your kind reply. What an incredible story you have. May I ask how long it has been since you were diagnosed? I am so happy to hear your report that your quality of life is excellent. That is something I hope my dad is able to say some day soon. I have applied for aid and assistance from the VA. My dad was never in Vietnam. He was due to go over when his father and older brother had heart attacks and he was kept in the US on a family hardship. I will look into travel reimbursement, I had never heard of that. I will be going to cancergrace.com tonight to become familiar with that site. Again your reply really gave me hope.

Ned I feel I should know the chemo agents being used for my father but I don't. I will be sure to find that out tomorrow. I honestly didn't know there were different ones, thats how little I knew about cancer. I do know my dad was diagnosed with squamous cell cancer at stage 4.

Randy I am in Olympia not far from Seattle, is Dr West the Dr mentioned affliated with GRACE? That is wonderful to know he is here.

Thanks for all your kind replies. My heart really breaks to see my strong vibrant dad battle this disease.

[Outrider1]

Lyn,

On the travel re-imbursement, I misspoke. He will be eligible if he meets financial guidelines. Depending on his financial position he may be eligible for travel pay. When you take him into the VA he will most probably have to do what is called a "Means" test which is just the paperwork showing his finances etc. When this paperwork is filled out, since he will be living with you, you may have to declare your financial situation as well, but I do not think so. I will have to ask and get back with you on it. I just know that my youngest daughter still receives a a death benefit from her father and they did not list her benefit on my means test as the benefit is for her support.

There are other guidelines about the travel pay that you can get when visiting the travel office in the VA hospital.

You also need to look into talking the The Veterans representative there in the hospital as well, they will help with letting you know what he is eligible for and filling out all the paperwork.

As far as feeling like you are playing "catch-up", I would suggest taking a notebook with you to Dr.s appts. to write everything down so that you can have a reference to go back over after the appt. I would also write down any questions that you may have before the appt. so that you don't forget. It might help you to write down questions as you read the forums here and at Grace. I know I am always forgetting to tell one or the other of My Dr.s something or ask a question and end up having to call them back.

There is plenty of information on the internet, but do not read and rely on any statistics involving cancer of any kind and prognosis (length of time) as many of them are at least 20-30 years out of date. Much of the the cancer therapies being used today have only come into being in the last 5 -7 years and have not been out long enough to gather good quality statistical evidence.

Also your dad is not a statistic, so they don't apply.

For the personal about me, I was Dx'd in May (May i9s not a good month for us, My MIL died in may, My husband died in may suddenly and unexpectedly a week after I had a car accident, so may is the month I would like to petition to remove from the calendar, lol)of 2008 with chemo started a week after Dx. I did 6 rounds (1 round is infusion week one, wait three weeks, next round started when next infusion came at the end of three weeks)carboplatin and etoposide infusion and then two days of etoposide pills after the infusion. My infusions lasted 3 hours as the drugs had to go in separately and I also got anti-nausea drugs infused before the chemo. My last chemo cocktail was 7 Oct 2008, so currently I am 14 months out from chemo and almost 20 months out from dx. My Dr. are all very pleased with my response to treatment and we are all keeping our fingers crossed that the chemo, just like the Energizer bunny keeps going and going (ie working, lol) and counting our blessings

Just remember, where there is breath there is hope.

Feel free to pm me about anything. And keep us updated on you and your dad's progress.

Dawn

[jaminkw]

Lyn, welcome to the site. Sorry you've had to enter our world. Sounds like you've been getting excellent positive input. Just want to reinforce--don't listen to statistics. We try as much as is possible to close our ears to anything that runs counter to HOPE. I hear you trying to hang on to that and we will help support it however we can.

Sounds like your Dad's living circumstances are the main priority right now. Good luck and keep up posted.

Judy in Key West

[Lynnie]

Everyone here has been so kind and it is so appreciated! Like I said I am so new to the world of cancer and am trying to become as knowledgable as possible. My dads dr is going to be in shock at the number of questions I have at his next appt.

I was reading in the "ask the experts" section through some of the live chats and it said radiation only last 3-4 weeks. Does this mean all the improvments I've seen in my dad will start to reeverse 3-4 weeks after radiation has ended. It has been 2 weeks since he finished. Although he is still having chemo.... his second round is this coming up week.

I'm now understanding that while there is no cure for Stage 4 it is something that he can live with. Which the dr's didn't seem to feel. But from this site and other places you all have directed me I finally have hope. Thank you so much for giving me that. I posted on cancergrace and its so wonderful that dr's are helpng so many people get answers to their questions. I can't seem to log into the site tonight.... but will try again tomorrow.

Dawn.... what a journey you have had. Please let me know what the drs say about your possible MS diagnosis. I will keep you in my prayers.

My dad is doing really well I am so pleased to report. He is getting around so good with his walker and has such a great attitude. He worries about me but I just want to do for him. I have a friend that is the Executive Director of a rehab/long term care facility and moved my dad into it on Wed. They put him in a really nice private room. He is getting lots of therapy there and likes the food. Its an hour from where I live but I get out there every other day for now.

[jaminkw]

Lyn, glad we have helped but I had to post and say how wonderful that you were able to find an agreeable place for your Dad. That's a good friend you have there to make that happen. Keep us posted.

Judy in Key West

[recce101]

I was reading in the "ask the experts" section through some of the live chats and it said radiation only lasts 3-4 weeks. Does this mean all the improvments I've seen in my dad will start to reverse 3-4 weeks after radiation has ended.

They're referring to the side effects (fatigue, etc.) lasting 3-4 weeks. The benefits are usually much longer, even permanent in some cases. I saw your similar question on GRACE (yes, the site was up and down yesterday), and here is Dr. West's response, in case you haven't seen it (others might be interested too):

http://cancergrace.org/forums/index.php ... 2#msg17622

It's terrific that you were able to move your dad into the rehab/long-term care facility. I'm sure that's a BIG relief to you. Aloha,

Ned

[Patti B]

Lynn-

You have gotten such good advice already (esp. from Dawn) that I really just want to welcome you to the site and remind you that you can come here for anything - advice, help, or just to vent.

Also - I want to stress to you to not listen to stats - my first once gave me 12 months top - I am now at 38 1/2 months!!!! And I still drive, and do everything I did before albeit sometimes slower. You dad is a person, not a stat.

Please keep us posted on how the both of you are doing.

Hugs - Patti B.

[Lynnie]

Thank you so much for checking in on us. I'm still hear and yes busy. I come on and read but haven't posted lately.

To update on my dad. On Dec 22 we took him to the hospital because he was really getting confused and losing the use of his left side again. The did an MRI and discovered that chemo was really making an improvement on the tumors through out his body but unfortunately radiation did not work on his brain tumor. His oncologist consulted with the neurologist again and they felt they could now do surgery to remove the brain tumor now that the rest were shrinking. Without surgery they didn't give him much more then a week. On Christmas Eve my dad very bravely went into brain surgery. This wonderful man doesn't even blink when they throw him knew curves he just says lets do it. The surgery went well and they were able to get the majority of the tumor. After a week he was released and went back to his care facility. He was showing some improvement but then last night he was complaining of shortness of breath and his nurse there could not get a blood pressure so he was taken to the hospital and admitted for dehydration and anemia. Also today they gave him a blood transfusion for low platelets (?) Hopefully tomorrow he will be released from the hospital. I watch him fight and people tell me what a will he has to live. I am so proud and thankful for this but I have a question and please do not think I am throwing in the towel. I will fight right along with him for as long as he wants. My question is when do you stop? He is exhasuted and confused and wants to be left alone (by medical staff) and so thin now. Hasn't ate in a week. I've already told him I am proud of him and love him. I want to tell him if he feels enough is enough I support that and am still so priveldged to be his daughter. This brain surgery has been very hard on him and taken so much out of him.... anyone have experinece in this area?

[RandyW]

Being in a facility is a lot more difficult than being at home fighting this! It sounds like Cachexia may be setting in but dont quote me on that! Dad needs access 24 hours a day to food if he wants it!! not 3 meals a day and that's all ! With cancer You eat when you are hungry not set times! I used to get upo in middle of the nite to cook for my wife when she was fighting LC. Also make sure dad drinks plenty of water at minimal! Dehydration in the hospital is not a fun thing! They IV ya full of saline and ya blow up like a water balloon! Mkae sure did has access to some kind of food 24 /7 because Ya never know when hunger hits. I would recommend something like ensure or boost to help out and they don't have to be refrigerated! Ice cream and others are good ideas but have to be refrigerated. Canned soups are a good idea if he has a fave! Dad needs to put on some pounds because cachexia is not east to fight!

Now, we did not quit until the last breath! That was my wife's choice. About 3 weeks before she passed away she said, " I am tired of fighting but I will hang in there! And If I see the light in front of me, That's where I am going, but I wont turn around and look for the light!" SO you see its an individual decision I believe and we can only stand by and support the persons decision! Because

in the end it is gods decision when to stop fighting!

Dr West is at the Swedish Institute ios Seattle! Awesome facility but it seems like the drive might be too far for you and dad because IF I am right, Olympia is on other side of the sound!! Correct? I used to be stationed IN Bremerton years ago!!

[fillise]

Lyn,

The decision about when to stop is a personal one. Ultimately it is your father's decision, but you should have a talk with him to let him know that you will support him as long as he wants to fight, but if the time comes when he is ready to say "enough is enough" you will support him in that too. It's not an easy conversation to have. But sometimes our loved ones keep fighting because they think WE need them to. He needs to know that if the time comes and he is ready to stop the treatments you will be supportive. I've had this conversation with my mom. It wasn't easy to bring up and you may need to do it in bits and pieces. Let him signal how much he is ready to talk about. Sometimes it is enough just to ask "what do you want to do?"

Susan

[mariola82]

First off, welcome to the site. I am pretty new to the site as well. I know what you are going through is very hard, but try to stay positive. Your dad will have "good days' and "bad days", but think of everyday as a miracle and a blessing. Continue to be your father's advocate. Become a great listener, you may not know the physical and emotional pain your dad is going through, but all you need to do is continue to love him, support him, and accept his decisions along the way. I will keep you and your family in my prayers. Take care!

~Mariola~

[Lynnie]

I agree that having my dad in a facility is more difficult for him then being home and I beat myself over that constantly. Its just not possible. I'm a single mom to a one year old daughter and my dad requires 24 hour assistance. My parents are divorced so there is no spouse to help care for him. I can't have him in my home. My dad can not walk or care for himself. He takes so many pills my worst nightmare would be him dropping one and my daughter picking it up. I understand everyone on here is fighting lung cancer but we all are dealing with different situations. This brain surgery has changed him. Its weakened him. He has been in the hospital since Wed. He has access to food and water 24/7. A good friend of mine is the Executive Director for the care facility my dad is in and the treatment he receives there is wonderful. My dad has been asking me the last 2 days to please get him out of the hospital and back to his room there. He is tired of tests and pokes and he wants to be left alone. In my opinion even when someone fighting this terrible things says enough no more treatments, thats not quitting. I have hospice set up for my dad when he gets out of the hospital. This is something we discussed. He can still receive chemo if he chooses because it is for palliative care. Right now he says he doesn't want to but I want to keep that open because I know right now its bad but he could improve and change his mind.

Susan thank you I did broach the subject with "what do you want to do" I also let him know I support him no matter what. I did my best to not lead him in any directions and to leave it open. I told him he isn't feeling good now but in a few days he can turn for the better and change his mind on some things.

I have learned to take each day on a day by day basis. Took me awhile to get there because I am a planner. Like I said this brain surgery just caused so many other issues to arise. I almost question why you would do that invasive of a surgery on someone in his situation as now he has this surgery to try and recover from while battling so many other hurdles.

[Lynnie]

Randy I forgot to mention I looked at the website you created for you much loved wife and what a special site it is. So sorry you lost her and at such a young age.

[fillise]

Lynnie,

It sounds like you have found a good place for your father and there is no need to apologize. It is important to remember that you are doing your best for him. In fact given the care he needs, it sounds like he is getting much better care there than at your home. If he likes it there then it is where he needs to be.

I'm glad you mentioned that you reminded him that he is not feeling well now when you talked with him. My mom learned that how she feels at the worst part of her treatments is not how she will always feel. It sounds like he is able to let you know his wishes.

Hang in there. You be there for your dad, and we will be here for you.

Susan