patrick1989

I see you finished active tx less than 5 years ago, did you end up having the EGFR mutation? I know people that are a year or more into Opdivo and doing well, while others didn't do so well. I'd say watch for shortness of breath and have it checked ASAP. Everyone is different, so you'll have to see how you respond. Good luck!

Hi Patrick. Just wanted another one of your Whatnext family members to tell you I am caring for you and praying that God will help you through this journey.

Hi Patrick ! First of all, I'm so happy to hear from you. I'm glad to hear you are ok. I'm sorry you have been so down. It's hard to stay positive all the time,I really have to make an effort most of the time. I try to stay busy ,but some days I just want to lay on the couch and watch tv with my cat. Some days I don't want to talk to anyone,I just want to be alone with my own thoughts.My own thoughts are pretty depressing most of the time.We deserve to have a pity party once in awhile, this is a very,very sad time we are going through. It breaks my heart to know that your family dosen't support you. They better pray hard that they never have to walk in our shoes and know what it's like to be alone,scared, and in pain.
It's ok ,Patrick, let them go, you'll never change them. You don't need heartless people in your life anyway.
Acupuncture is working for you, that's great. Any chance you could have it twice a week? How is the "STARS" program going ? I know it's hard to get motivated to do things when you feel crappy,but even if you could go for a walk for just 15 minutes a day it would make a big difference in your mood. I know because I force myself to do it and it really does help. Also, I think if you could find a support group,it could become a family for you. You see how we all support eachother on this site, being with people face to face that are in our situation would be even better and would be the family you need,one that REALLY cares about you.
I am doing ok.I had 2 malignant nodules removed from my right lung and 1, also malignant, removed from my feft lung 6 weeks later. Pretty scary to know it has spread from the pancreas. Surgery wasn't as bad as I thought it would be,but the chest tube ?
Not a picnic ! This Thursday I have an appt. at Columbia to see what my Dr. thinks the next step should be. I also have an appt this Tuesday at Sloan Kettering for a 2nd opinion. This whole thing is such a nightmare,right ? I really wish I still lived in FL. I would only be maybe 25 or 30 minutes from you and we could start a support group, and serve Jelly donuts at the meetings !!! Enough for now. I truly care about you, Patrick,and so do all of the "whatNexters".
Take care of yourself and don't forget to look at the stars ! Zoe

Hi Patrick....haven't seen you on here lately. I just wanted you to know that I think of you often. I hope you are well and taking care of yourself. You are always in my prayers. Zoe

Hi Patrick1989,
Just wondering how you are doing. Wishing you the best.
--Journey

Hey Patrick...Thanks for thinking of me.
Accupunture is the best, right ? I sure could use some right now.
So happy you're doing well. 8 SPINE SURGERIES ?! I didn't know that, you've really been through hell !
Keep doing what you need to do.so you can feel good and enjoy beautiful Florida and your puppy.
I'll let you know how my surgery goes and I'll be thinking about you strolling around Publix ! Take care my friend. Zoe

Hi Patrick, Just a little note to let you know that I'm thinking of you.Hope you are doing well. Zoe

Hi Patrick.......been thinking about you. I hope "STARS" turned out to be something that you can benefit from. Zoe

Hi Patrick....
I hope you're feeling stronger today. I know what you mean about being lazy. A lot of times I start to do something around the house and 2 minutes later I'm on the couch watching tv. I can't keep my mind off the "what if 's" as you say.
It's ok to be lazy, the good thing is you're resting. I know it's really hot down there right now but maybe when the sun goes down,you could try walking outside for 10 or 15 minutes. You could try it and see if it improves your energy. At the very least it will give you a change of scenery!
Omg a Corgi/Beagle mix....how cute your dog must be! About her digging holes, that wouldn't bother me a bit. It would make me happy to see her happy doing it.(of coures not many people would agree with me) I would just put a sign out there saying "WATCH YOUR STEP" LOL.
Will yourself to be stronger tomorrow. I will say a special prayer for you. Watch the stars !!! Zoe

I know !!! Talk about frustration .

Hi Patrick, Long time no write!
How are you doing ? I think of you so often and am hoping you are well . I don't know what the hell I am doing or thinking anymore. My head is all over the place. I'm freaking out over having to have a lung biopsy on Sept.16th. I don't know if I have already told you this,but I saw the surgeon last week and he was great ,I feel like he's the guy. I have 3 nodules ,2 on one lung and one on the other.2 are very small and one is 6mm.He's going to do VATS on the bigger one and watch the smaller ones. I am so scared out of my mind that I think I might have a heart attack before the surgery ever happens ! The thought of chest tubes and deflated lungs and painful recovery is sometimes too much for me to take.I hope I am making this a bigger deal than it needs to be. Fear and anger are taking over and I almost wish I would have a heart attack so I wouldn't have to face this. I really don't know how people do this,how you do this,it's crazy ! I'm one of those people that dosen't even want to be anywhere near a hospital even to visit someone ! I thought I was done with all this after my pancreatic surgery and chemo and radiation,guess not. This sucks beyond belief, I know you agree.
I wish I were back in Fl. shopping at Publix,driving down 41 without a care in the world, like it used to be. Those days are gone so I better get used to it.
Thanks for listening to me vent Patrick. Please let me know how you are when you get a chance. I'm thinking of you and praying you are doing well.
Take care. Zoe

Hi Patrick ! Sorry I haven't been in touch,lots happening around here. My daughter's wedding was beautiful.I had my other daughter and her husband visiting from Indiana for ten days. After that I went for my CT scan.The nodule they had been watching on my lung has grown from 5 mm to 6 mm in 6 weeks. Looks like I may be joining your club. I am going to a thoracic surgeon within 2 weeks. I'll let you know what happens. Did you have to have a biopsy to find out it was cancer ?
That's the one thing that I am terrified of.
How are you feeling? I think of you often and keep you in my prayers. Too bad I still don't live in Estero,we could meet at Publix for jelly donuts !!!
Please take good care of yourself. Stay in touch. Zoe

Hi Patrick1989,
Thanks for writing. Sorry I was not able to get back to you right away.

My husband had the right type of bladder cancer, if you can call any type of cancer good, TCC (Transitional Cell Carcinoma), and most common type of bladder cancer. The tumor cells were considered aggressive, but he went through a lot more immunotherapy than most people go through. We believe both tumors were there at the same time, but one was not seen because of its location near the opening. When the doctor got a new 'flexible' cystoscope, he could then look around the whole bladder and that is how it was found. We are lucky it was found early enough to not go into the muscle layer. He is going to be OK.

My lung cancer is stage 4, but would have been stage pT2a, N0, M0, if it was not in my spine and sacrum. There is some question whether it is in my bones. The PET/CTs show that my bones looks like treated met. now. I had a bone biopsy before I had my lobectomy which came out negative. Generally they do not do surgery if the "cat" is out of the bag. My surgeon did not think it was in my bones, since it was not in my liver or my brain. He is a very experience surgeon and had never seen it go to the bones first, so I believe him. Maybe it is just blind hope on my part, and if it returns I will be devastated.

Doctors don't like to say much about prognosis even though I did ask. What you read in books or on the internet is very outdated. There is new research happening all the time. You might notice that there are several folks here at WhatNext with stage 4 cancer and have been active for many years. That gives me a lot of hope for the future. So hang in there and continue to fight this rotten disease.

My ultrasound went OK, but I still don't know anything. I suspect I will be having more tests of some sort in the future. I see the doc. on Monday. One thing we all can say is that we never stay away from doctors very long.

Thank you, and take care!
--Journey

Thanks Patrick, that's sweet of you to say.
You take care and stay well. Zoe

Hi Patrick... I'm sorry that I didn't get back to you.My daughter is getting married this Sunday.Needless to say, we are all running around trying to get ready for the big day. Tons of family should be coming from out of town any minute, so I won't be at my computer very much this week. I'm really upset about that post I sent you the other night that got lost. I need to be more careful in the future. Take care of yourself.
Zoe

Yes Patrick1989,
Continue to save your money since you are going to live as long as you wish. :-) I was interested in your experience with radiation. I have met in my neck, C3, and was told if the pain gets too bad that they can have radiation. I am OK now - in remission, no new growth. Do you have met in your neck too?
--Journey

Hi Patrick1989,
Sorry you are having such difficulties. I have the same type of cancer and stage 4, but I have not had radiation. I send you my best wishes.
--Journey

Hi Patrick, I wrote you a long post last night.I think it got lost because I think I forgot to click on post or comment when I finished it,darn it !
I'll write again tonight. Zoe

Hi Patrick...I moved to NY state 18 months ago from Estero, maybe 20 or 30 minutes from you ?
I hated to leave Fl. I loved it there and miss it so much,especially PUBLIX !!! There is nothing like it here. The only reason we moved was to be near my daughter after I was diagnosed with pancreatic cancer. I'm feeling pretty good,hope you are too. I'm happy to hear you have a doggie,
they make life so much better don't they ? Take care and say hi to Cape Coral for me ! Zoe

Hello and welcome, we are glad you found us. Please feel free to join in the conversations. Here is a link to our cancer dx page for your type of cancer. Take a look at it to get you started on some information. You will notice at the bottom of that page 4 of our active users who have had that journey already, you may wish to contact them for their experience and wisdom. Also, I encourage you to go to the questions page now by clicking on the questions tab at the top of the page and post what is the most pressing issue you have right now. This will introduce you to the community and get you started on the help you need right now.

https://www.whatnext.com/conditions/cancer/lung-cancer

There are also subtypes listed on this page to narrow down the type of cancer to match your dx.

You may also find our "Beginner's Guide To Cancer" page helpful Click Here for that=> http://bit.ly/10BQKCi

Also, if you can take a few minutes and fill in some details of your journey so far, it will help others as they try to answer questions for you, it also helps others as they search through the data base to find someone like themselves. Confirming your email will allow you to receive updates and notices from the site when someone answers your questions or writes on your wall.

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GregP
3X Survivor
Team WhatNext Community Mgr.

Welcome to the WhatNext family! The WhatNext family is made up of people like you who are looking for help or looking to help others. To help you along your journey the WhatNext family has put together a Beginner's Guide to Cancer that I highly recommend you check-out here: http://bit.ly/10BQKCi. Also, please do not hesitate to reach out to others or ask for help.

Wishing you the best.

David
Founder, WhatNexter