kukla

Thanks Judy. I will do that! Love your new pic btw. You look great.

I'm so sorry you and your family are going through this. Your mom certainly sounds like a fighter! Thoughts and prayers coming your way.

Hi Indy - I am so sorry that you and your family are going through this. I don't know what's normal - it took two months to diagnose my husband with stage IV, but once they did it he had chemo the next week. Part of the reason is because his pulmanologist wouldn't give us the results of the pet scan but referred us to the onc, so my husband was officially a patient by the time we found out how bad it was. It is such an awful roller coaster, especially at the beginning. Everything is hurry up and wait. Get the results of one test then wait......until they decide to do another test. The one thing that has helped me as a caregiver is to be the best advocate for my husband that I can. I do a lot of research online, especially at cancergrace.org. If something seems odd, I call the doctors until I get a call back. And I call ALL of them - pulmonologist, onc, family doc. They don't seem to mind and are happy when I tell them I've read some new research. I can tell you that, as an advocate, the info is scary. We were told 12-14 months and we are at month 14 with improvement. One of the most valuable things I've learned from this site is that the statistics are crap. What counts is how each person responds. There are a lot of great stories from folks on this journey who are doing well. So don't lose hope - each person is different. Good luck and God Bless. Kathleen

Thanks Betty for the great post. God is still there and performing miracles every day.

Hello Lungevity Family - It has been a long time since I have been on this site. Since August, Glenn came home from the rehab hospital. He went from being bedridden and needing care 24/7, to a walker and care 24/7 to a cane and now he is walking and driving! We're out of money again thanks to all out of pocket expenses for caregivers, but it was worth it. Between caring for him and my new boss, Ihaven't been able to catch a minute to post for quite a while. Michelle love the memory thread and will post to that soon. Right now I'm actually enjoying life and taking a deep breath. Now for the REALLY good news - PET Scan in July showed improvement everywhere, and a CT scan 3 weeks ago - on the one-year anniversary of finding out it was stage IV lung cancer showed stable disease. WOOOO HOOOO! I've read several posts from Dr. West that stable and improving are equal when it comes to survivability so what a gift the past two scans have been. I've been nervous cuz Glenn started Alimta maintenance chemo last week but he seems to be over most of his side effects. He now has something called autonomic neuropathy - his central nervous system can no longer regulate his blood pressure or volume. BUT good news yet again - the meds have kicked in and GLenn has learned some of the warning signs so he hasn't passed out or had a fall in about a month (fingers crossed of course)! So, we are back to being almost normal. And my 12-year-old stepson has come to live with us cuz his mother can't handle him any more. It's a challenge and it's taken a few weeks to get him back in the groove, but we are all together as a family again (he used to live with us), except for my son in New Orleans. But he is doing good too. So I have a big early Christmas present! I've read so many posts today that have made me sad, but we got a hand back up the mountain again with great care, great friends, lots of prayers, and a great family. I pray for all, and that you all receive a helping hand. Now back to the game - The Redskins are actually not losing yet and it's the beginning of the 2nd half. Hugs to all. Kathleen

Denise, thoughts and prayers are with you.

Kristi - I am so sorry for your loss.

Hello - question about Alimta. As expected, Glenn is having some SOB, mostly when he stands and starts walking. He breathes very quickly and apparently his heart rate gets very high. Turns out his heart rate while sitting is also higher than usual. NOW have to go to cardiologist, in addition to PCP, Onc, and infectious disease doc for his c diff. Can't get in with cardiologist for a while, the new patient thing. Has anyone had a similar experience while on Alimta with heart rate? Happy Labor Day Weekend to all. Kathleen

Hello West Coast Sister - Nothing to add but sending you hugs and prayers. I'm the same in terms of not being able to sleep during the day. I bought a sleep mask that I can put over my eyes. It also has some cucumber extract that is supposed to help the circles under my eyes. We'll see! Hang in there, glad hubby's temp is down. Kathleen

Barb - just want to add that my thoughts and prayers are with you and Bill. We've had a couple of those instances discussing cigarettes, and it's frustrusting. Glenn is 59, and nobody thought twice about cigs when he started smoking. Tried everything to quit too, including hypnosis. It really gets me going. ANd I believe a little *iss and vinegar is a good dietary supplement! LOL Let's keep finding ways to laugh. It makes the roller coaster so much more bearable! Kathleen

I have no answers for fatigue, we just take it one day at a time. I am going to check into the megace. Never heard of it but Glenn is having problems with weight. Keep us posted what your mom's ONC says about this one...

Wow, Judy I can't believe that you're a day past your mid 40s. You go girl!

Whew! After only 6 weeks in acute care and rehab hospitals, Glenn finally came home last Thursday. Insurance companies are always on my dirty word list. He was supposed to be there until this week but insurance kicked him out. We are working it out though, lots of work be he is sooo happy to be back where he belongs! Overall he is doing great. Had a bit of a scare yesterday. His new meds were causing him to get really sick and we were worried he'd dehydrate but he didn't. We have a new aide, who is here 4 days a week so I can work and she is awesome. She takes really good care of him, pushes him a little so he does a little more every day. And she is helping me rehab my dog Dizzy for those of you who know my saga. And the best news is that our Onc went back and double checked the results of the PET scan with the radiologist. It's really true, he is showing improvement everywhere. Glenn is really weak now, needs a walker, home health PT and he's developed a swallowing disorder, but it's all managable with the good news that the cancer is getting knocked back. Dr. West gave me some great info on maintenance therapy, and our onc agrees that we can wait so Glenn can get better. He has a chemo vacation for 2-3 weeks and doesn't need a CT scan for 3 months. Today is a good day in central Virginia!

Katy - Glad you got a break. So sorry that Gene is down, that does have a sense of finality. Congrats on the good news! I know that some of the targeted therapies dissolve the tumors from the inside out so they are hollow and collapse upon themselves. Hope your daughter had a good back to school day, 1st grade is such a great time for kids! Sending you thoughts and prayers. Kathleen

WOOO HOOO! Hooray, it's about time you had some good news. And a long sleep. Hugs and prayers. Kathleen