New to this site

[Char S.]

Hi everyone. I am new to this site. My 64 yo husband was diagnosed with NSCLC Stage 4 in 2008. He was doing well until they found 6 brain mets in May. He had 15 WBR txs and is now back on chemo but he's not eating and barely drinking. His kidney function is down and I am so worried and frustrated. He seemed to have so much hope before and now it seems like he's given up. He won't talk about his feelings and I feel like I am in this all alone.

[RandyW]

Char, your not alone by any means ! We have been down these roads lots of times in past! Have your doctors been made aware of everything going on? what chemos has he had? how recent ore these developments?

There is always hope!

[Annette]

I second what Randy said. You have stumbled onto a site that has members from both sides of this horrible disease. Some of us are survivors and some are co-survivors (caregivers). There are so many success stories here that I hope give you a little comfort where there is little to be found.

Again, as Randy said, I hope you have made your medical team aware of the problems. There are many avenues out there that could help him get over the hump and back on the road to recovery.

Although there are many here that will offer you support and excellent advise you might also find some answers at cancergrace.org.

I know it is hard to find any humor in your situation but look around, join us in the Just For Fun category and take a moment for yourself. Hard to do but when you take care of yourself - it makes it easier to take care of someone else.

If you need anything or have questions please post - everyone here is so very supportive and understanding. It may not seem like much but it would mean so much to everyone here if we can help you "virtually" any way we can.

Take care,

Annette

[Joppette]

Hi Char,

Welcome here. We hate the circumstances that drive us here, but love when someone new finds us. You are officially no longer alone. As Randy and Annette have said, share the situation with us. There's bound to be someone here with circumstances like yours. It helps to know that.

Getting on-line support is crucial to dealing with the tough stuff of life like this situation. There's always hope, as Randy said. Let us know how we can help.

Judy in MI

[laban]

Hello Char

I'll offer you a welcome although it's never fun to have to be on this road. The folks here are so wonderful. If we don't have an answer someone usually has a suggestion or another site to go on to get some answers. CancerGrace.org is an awesome site and the Drs there actually answer questions free of charge. We have all had opportunities to utilize that site from time to time. They're very helpful and compassionate. Here is a link you might want to read

http://cancergrace.org/radiation/2008/0 ... rt-review/

I know that when Bill was on chemo and radiation he too was quite stubborn about drinking. The more I pushed the more he refused. He listened to the Nurse at the Oncology Center where he had chemo much better than he listened to me. He never had brain mets that were diagnosed but he did have PCI to prevent them.

I hope you'll feel safe coming here and asking questions or just venting. I would have been lost without this site.

Blessings to you in your journey as a caregiver

[jaminkw]

Welcome Char. Sorry you have to be here but glad you found us. I think I know how your husband feels. When I went into remission early in my treatment, I was sure I had beaten it. I was 3b and the doctors told me to expect it to return but I knew better. It was the worst time in the 3 yrs and 9 mos since my dx when it did come back after a year in remission. Even if he wasn't in remission, when you are convinced you have it knocked, a downturn is an unbelievable blow to your psyche.

Tell your husband he will bounce back and tell him I said so. I never think I have it kicked now. I have realistic goals like going into remission again and a plan as to how I will deal with that when (not if) it happens. But always in the back of my mind is the likely reality that if you have advance cancer, it probably will come back. Each time it does, I vow to meet it head-on and kick it back again. That's what I'm doing right now as I write this--kicking back the recurrence that came last year when my cancer moved it's LC cells to my abdomen. I'm feeling better every day and he will too when they get done treating the brain mets.

People here have had great results with radiation for brain mets and follow-up with chemo increases the odds in his favor. Keep encouraging him and give him time. He's had a terrible shock with this situation. Keep us posted as to how he is doing.

Judy in KW

[Alan]

Hi Char, Welcome . I too am sad for your situation, but glad that you found "us". When you read all our histories as I did, you'll see that we all have our own journey. When I was in the middle of all the chemo, I got dehydrated to the point that the nurses nicknamed me Mr. Weeble Wobble. I was so dizzy when I stood up I could barely walk. I even fainted one day as I was getting off the elevator. They stuck me in a room and started liquid drip and O2 for 2 days. Even on days with no chemo, I went just for a big bag of liquid. My throat was also burned from all the nearby radiation so it was hard to swallow. I drank as much as I could.

Most centers offer a support system to help with emotional and spiritual help too. Ask about that. My cancer is in remission now but they told me to expect a recurrence. They suggest that I keep the power port even. So, You are definately not alone. He knows he's not alone too. It is a tough fight and I along with this group can be with both of you through it . It sure helps me just to vent or whatever. There is comic relief over on "just for fun" I'm an admitted babbler so be forwarned. Alan

[RandyW]

also in this weather dehydration is not a good thing to be in the hospital for!! No fun at all! Drink up and stay hydrated at the very least! make sure to have on hand any of his fave foods or smoothies and or protein shakes to help out with energy and fighting off other problems!

Ensure and boost are great things and you can add some protein powder for good measure like the body builders drink!

[Janet B]

Char -

I can totally relate to this post. I was diagnosed in Dec 2006 and had 4 1/2 years of good reports, NED, no progression of disease. I knew the cancer was still there - with Stage 4 it is always there - but I started to think I would be the one who beat it, I would be the miracle.

Then, in April, the scans came back bad. I too had Mets in my brain - at least 3 - turned out to be 6. I went through Gamma Knife radiation, and changed my meds.

It put me in a bad funk - for quite a while. I have been trying very hard to be very positive through this whole thing - but after so many years of good news, the bad hit harder than I expected. On top of that, when I was first diagnosed, I had a list of things I needed to get accomplished, organized, cleaned up etc. And, although I did a lot of it, I got complacent and started putting things off. With the new news, I went into the crazy, things have to get done mode, which caused me more stress. Then, add to that the new meds I am on - which make me very jittery, very sleepy and very "fuzzy" and I am not the same person I was a few months ago.

So, I understand what your husband is going through. This is hard. But, what makes it easier is talking it out. I try to always put my best face on for everyone, try never to complain, or say I don't feel well. That has gotten harder lately, but I thought I was still covering up pretty well. It turns out I was not! Now that my family understands how I feel, I feel more free to feel bad when I have to, to let myself be down sometimes. I would never have come out and told them, that is just the way I am - but when they came out and told me I was acting different it opened the lines of communication.

I think it is very important for you to let your husbands doctor know what is going on with him. Again, I thought I was hiding things pretty well, until my family told my oncologist what they were seeing - If there is one person we have to be totally honest with in this journey it is our oncologist - so if it is not going to be the patient it has to be the caregiver! His doctor may be able to change meds, help with anti depressents, suggests alternate therapies etc.

Take care of yourself Char - don't forget that part of it. You are in my prayers -

peace

[Char S.]

Thank you all for your replies. It gave me a lot of comfort in knowing that others have been in this same situation. I think your are right on jaminkw on how he has been feeling. He did so well with his initial chemo (carbo/taxol/avastin) and had tolerated all so well that the doctors were calling him a medical miracle and said they did know quite what to do. The kept the chemo going for about 6 months and then cut back to just the Avastin for 4 months and then nothing! Life seemed normal and it seemed we had beaten this monster. He had 4 clean scans before he got one showing a small lesion in his right middle lobe. No problem; we'll just do the chemo. Then they decided to do the MRI to make sure there were no brain mets before the Avastan. They found 6 individual lesions. I guess it has taken our safety net away and it actually feels worse than when he was first diagnosed. He was quite heavy when he was originally diagnoses (300#) so I know he's glad he's losing weight and I think that's why he doesn't eat. We did discuss this with his doctor who talked to us about Megace but George said he wouldn't take it. I'm still fighting with him over the fluids. His creatinine goes up to 2.5 if he doesn't drink enough fluids. We are trying all different liquids since he says nothing tastes good. The past two days he has drank diet Peach Snapple Iced Tea and says that tastes good.

Thanks for the hugs and well wishes. People want to help but unless they've been through it, they don't know what to say.

I'll move to a more appropriate subject now.

Char

[RandyW]

Weight loss in moderation is good thing! Weight loss to fast is a bad thing!!! Do a search for cachexia here and you will see what I mean!!

[jaminkw]

Yes Char, been in his shoes. I was the wonder woman of lung cancer in the beginning too. Makes it tough but tell him he'll bounce back. I did. Hardest thing is learning to do what the doctors tell you to do lol.

Judy in KW

[andrewsmith082]

Hello...I am new member to this site.

[jaminkw]

Hi Andrew. Glad you found us, sorry you needed to. Are you a cancer survivor or a caretaker. Love to know more about you. You should have your own thread though. Go to Welcome New Members, Introduce Yourself and give yourself a new title. Just change it a little, like I'm New to this site or anything you'd like. I'll be watching to see more information about you and your situation.

Judy in KW