Just Went To Stage 4

[jzaa]

In the last 2 and 1/2 months, I learned my lung cancer went to my brain, had the targeted radiation treatment, had horrible side effects from the steroids, contracted pneumonia and got an infusion(first) of Opdivo. Everything has went by so quickly, no time to really process, and i'm so tired I do not know where i am going to find strength for this fight. My biggest fear is to hear my doctor say sorry this won't work for you. I've been devastated since hearing it went to my brain. So many others have it so much worse, but I feel so emotionally fragile right now, I can't bear more bad news. It has been hard to keep going. Everyone is different. But, the intense headaches i suffer from that steroids help with but cant have with opdivo scares me. Living a day with a headache that hurts so bad that all you can do is cry and take pain pills and hope to go to sleep soon isn't living. It is intense pain. I am scared that this might not be a solution for me and having brain swells cant even get you to have the ability to think straight.

[Debby1125]

jzaa

[Debby1125]

I am so sorry for all that has hit YOU in such a short time. First can I say "I hate cancer" and I say more nasty things about it to my husband and best friend than that.

We don't really get answers so we most times put it in Gods hands and pray he wants us around longer on earth.

Excruciating pain to the brain is just awful sounding. I so wish there was a stitch to turn off that mean intense pain.

I wish you the best in your decisions and please now I will be praying and sending positive intentions your way. Much love, Debby

[MeHilly1]

Went through the same thing, I've had brain mets twice the first one was worse than the second hated the steroids. Make sure to report the head aches brain swelling can cause symptoms worse than the tumor I know from my first go round. I also had opdivo and had no problems with it except it didn't work. I have a friend who is on it, she feels good and for her it's a wonder drug everyone is different. Don't lose hope there is so much being learned these days and new treatments are being developed everyday. I've been in two clinical trials and am currently looking for my third. Take each day as it comes, for me the worst side effects past but it did seem like it took forever. Being sleep deprived makes things even worse, talk to your Dr and perhaps get a perscription sleep aid, that helped me a lot and I only needed it for a short time you need sleep to heal. Good luck and I hope you feel better soon.

Jean

[MeHilly1 in reply to MeHilly1]

One thing I forgot to mention is make sure you are getting plenty of water and fluids getting dehydrated can make symptoms MUCH worse. Plain water, bottled water with electrolytes can really be helpful. I know it's not always easy to drink when you don't feel good but force yourself. Hopeful you feel better soon.

Jean

[BrigidK]

I had the same dx (brain met stageIV) same treatment nearly a year ago. Brain is now clear after the one and only treatment. Take it one dx at a time. Don’t let fear push you to the unknown. You can fight this.

[FtB_Peggy]

jzaa, listen to these wonderful Warriors, they care, they know, they support you. Please know you have our thoughts and prayers surrounding you during this difficult time. I hope the decisions you have to make present themselves soon, and you will feel confident moving forward. I pray for relief from your terrible pain. Please make sure your medical teams knows how severe your pain is! Take care, please keep in touch.

[Ruthie1950]

I’m so sorry you’re going through this. I pray your treatments start to work and your headaches diminish. May God strengthen you and remove your pain.

[anrean]

Jzaa. Don't give up hope. Your team needs to know just how bad the pain is so that they can work with you on it. You said you are emotionally drained - have you thought about seeking out a therapist who specializes in cancer? Your team should be able to help find a therapist. I did and it helped a great deal.This is my 5th primary cancer, and I very much started this one out feeling like giving up - 15 years of fighting is a very long time. I know just how fragile we can become when the side effects of treatment are almost as bad or worse than the disease. It is important to talk to your team and see what else they may have up their sleeves to help you. Treatments are changing so fast it is necessary to tell them everything and let them help you make decisions that are good for you. I will be praying things get better for you!

Lauri-Anne

[FtB_Peggy in reply to anrean]

Amen, Lauri-Anne!

[Pandora8205]

Jzaa, stay strong and you will, you will be as strong as you need to be. August 10 2015 51 years old diagnosed stage4 nslc was in liver bones adrenal and a 4.3 cm brain tumor by sept 10 had brain tumor removed. Now its 2 years been through hell. Yes there are days where you cry and think things but get pissed and you will get through it. Opdivo didn't work for me. Carboplatin and alimta worked for 1 1/2 years but now on stronger stuff. Everything works different for everyone. Get yourself educated and do research so you can ask question. lots of prayers and strength heading your way. If you help with questions. We can help everyone is going through it..

[Esthersm]

Love & prayers are w you!

[Jvoulo]

I was diagnosed with NSCLC back in Oct 2016. I just turned 51 the day before I was told I had cancer. I never smoked a day in my life. I was very active. I was a runner, running 25-30 miles a week. I had a routine chest X-ray done. The Dr found a couple of nodules in my left lung with fluid around my lung. He sent me for a CT-scan to get a better image. He was concerned about it and referred me to a thoracic surgeon. I had the fluid removed from around my left lung. They sent it out to be tested. It can back cancerous. I was sent to an oncologist to discuss my options. She sent me for an MRI of the brain and a bone scan. The MRI came back with 3 tumors in my brain. Bone scan showed cancer in numerous bones. I had a biopsy of one of the tumors in my lung. It was sent out to California to be gene tested. It came back that I was a match to receive Tarceva a pill I take once a day. It is a targeted therapy that uses you’re immune system to fight the cancer. I also had radiation treatment to my brain. 5 treatments pinpointed laser treatment. Everything was going great. Then in June of 2017, I noticed I was having left sided weakness. I contacted my radiation oncologist to let him know what was going on. He told me to come in and he will see me. He set up an MRI for me well before I could get my MRI, things got worse. I called my Dr and told him I was going to the ER. When I got there, I had a MRI done. They found I had fluid on my brain with a lot of swelling. It was called radiation injury. It was from the treatment I had back in Nov. I was put on Dexamethasone to reduce the swelling. That did work. I started to get back movement in my left arm and leg. My oncologist came in and said that there was a chemo treatment that will work on getting the swelling down. I was started on avastin IV treatment, 4 treatments once every 3 weeks. That worked great. I went to rehab for a week. I was still having problems walking. Things were going great, up until about 2 months ago. I started having problems with my left leg again. But on the plus side, the 3 tumors in my brain are gone as well as some of the ones in my lung. My scans are coming back good. 7 out of the 10 masses I had in my bones are gone as well. If it was one thing I learned through all this, is that you have to have faith and patience.