antony Posted March 9, 2016 Share Posted March 9, 2016 Hi all... I'm new to this forum & my world is falling apart around me. My 39 year old wife was just diagnosed with stage 4 adenocarcinoma yesterday. Austin Cancer Center made it a point to see us immediately for an oncology appointment when the group of primary care physicians had been taking their time getting something set up. Yesterday we were able to view the results of her PET/CT scan that was done last friday and finally speak with someone that could develop a plan. Seems that she has a growth in the right-center of her lung, as well as one on the right outside portion. It has spread into her rib bone on that side and possibly in her lower back bone. I am crushed, but not as much as she has been. Cancer runs rampant in her family, but no one developed anything as early as she has. I believe that we are trying to set up a biopsy/bronchioscopy for as soon as we can so that the oncologist knows exactly what she is battling. There is some concern that this didn't start in her lung, but alas the scan didn't show other lit up areas. My understanding is her growths don't look typical. Our oncologist wants to start her on chemo right away (next week?) and then radiation later for the tumor in her rib. She is experiencing quite a bit of pain from the rib and the tumor in her lung has produced a second pleural effusion (the first was drained....when they just thought she had pneumonia). I've been reading about genomic testing & my hope is that they can get a tissue sample large enough to do that. My world is falling apart. I'm trying not to read too much on outcomes and trying to remind myself that she is young, strong, and otherwise healthy...all qualities that should make her be able to beat this and send it into remission. Any advice, thoughts, or prayers are most certainly welcome. I cannot see how I can go on without her after 17 years. I'm sitting here crying as she gets some much needed rest. I've been strong for her, trying to keep her hopes alive...but I fall apart when she is not around. Any help is greatly appreciated... Scooter49 1 Quote Link to comment Share on other sites More sharing options...
Donna G Posted March 9, 2016 Share Posted March 9, 2016 Hello Antony. So sorry to hear about your wife. Glad to hear she is in a good Cancer center. Hopefully she will get that biopsy done soon and also the genetic testing. I hope they have given her something to help her deal with the pain also. I started with chemo and radiation and it helped a lot to shrink and kill the tumor. It is not easy but it was well worth it. Glad she has a loving and caring husband to be there with her on this difficult journey. Remember to bring a notebook , get answers to all your questions and write them down. You certainly will be in my thoughts and prayers. Please keep us posted on the results of the test and her plan. sincerely Donna G antony 1 Quote Link to comment Share on other sites More sharing options...
antony Posted March 9, 2016 Author Share Posted March 9, 2016 Hi Donna, I appreciate your kind words more than you know. I'm hoping she can have the biopsy done in the next two days and begin chemo next week. She's very afraid and its breaking my heart. Trying my best to keep her spirits up but its difficult. She received hydrocodone for her rib pain yesterday and had the best night's sleep she's had in a week...it's also helped a lot with her cough. I will most certainly be in touch, as I feel that I'm falling apart but can't let her know that. I need to hear some kind words of survival, because I cannot bear to think about losing her. Nearly everything online doesn't sound good, but I realize she's young & otherwise healthy, so my hope is she is not a usual case and can spend many many more years with me. We have an MRI of her brain tonight, keeping our fingers crossed that we can battle this. Rosaries and prayers daily...please help if you can. washashore 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted March 9, 2016 Share Posted March 9, 2016 Antony, Donna survived; so did I. Knowledge is power. Here is a resource that will acquaint you with your wife's disease: http://www.lungevity.org/about-lung-cancer/lung-cancer-101 One suggestion at this stage. Treating cancer with chemo requires a lot of IV insertions. My veins rebelled. Ask your wife's oncologist about arranging to have a port installed. That will make chemo so much easier. Beware of hydrocodone's effect on slowing the digestive process. Ask your doctor if it is OK to start a laxative treatment. Depending on the chemo formulation administered, you may need to change the laxative formulation. Again, this is a point for discussion at a consultation. The planned radiation treatment should reduce her pain. Scheduling will soon become a management challenge. Get organized now. If you have a smartphone, start using the calendar function to set appointments and use the alert function to give you reminders of those appointments. Use the calendar also to track the onset of side-effects. If you don't have smartphones, use a monthly printed calendar in a 3 right binder. Also, the smartphone notes capability is a very good place to record all your wife's medications (name, strength, dose). Everyone will ask you for this information and I just open my note and hand it to the nurse. Another challenge will be the avalanche of bills and statements. Start a spreadsheet and organize it with "date of treatment", provider, procedure code, and copay made. Ask the nurse or doctor the procedure code used for the treatment or consultation. As statements come in, you'll be able to match them to your record and annotate the invoice number to your spreadsheet with the statement total. When you get the insurance settlement invoice, add that information to the spreadsheet and record your cost share. You can really help by getting ahead of this game. You'll have lots of questions. Ask away. Many here have been exactly where you are. Many also have been where your wife is. We are still here. Stay the course. Tom bjacksontex 1 Quote Link to comment Share on other sites More sharing options...
antony Posted March 10, 2016 Author Share Posted March 10, 2016 Tom, thank you so much for your support and advice, it is appreciated more than you know. We have discussed getting a port put in either the end of this week or beginning of next, our Doctor plans on it. She just received a script for hydrocodone yesterday & was able to get the best nights sleep in a week (helped with pain & cough). We're at a brain mri now...I was told it was a staging scan to monitor over treatment & my wife is terrified that it has spread to her brain. It's unbelievably difficult trying to keep her spirits up, but I'm doing my very best. Lots of being strong when we're together & then falling apart when I'm away from her. I greatly appreciate everything, I believe in her, I just wish I could get her to believe in herself right now. Hoping we've turned the corner of the worst of it & our team will pull us through. Quote Link to comment Share on other sites More sharing options...
washashore Posted March 12, 2016 Share Posted March 12, 2016 Antony, I agree with everything that Tom posted. My wife kept a copy of everything. Make sure that you get copies of all MRI and PET scans. Make sure that you get the CD's. This saves time if it comes to getting a second opinion. I had trouble with staying hydrated. I was going in 3 times a week for for fluids. I asked about having a Nurse coming to the house to give me the fluids. For some reason they did not inform that this was an option. It was a great relief for my wife. If there is a social worker at the hospital then take advantage of using them to get things off your chest. Your wife needs you now and you have to stay strong for her. See if there are any groups for caregivers in your area. Basically use whatever services are available. Its a tough battle that you are going through. I will keep your wife in my thoughts and prayers. STAY STRONG Quote Link to comment Share on other sites More sharing options...
MaryTD777 Posted April 1, 2016 Share Posted April 1, 2016 Hi Antony, I hope the tests have all gone easily for her and you have a plan soon! Please keep us updated when you can. Tom gave you some great advise, as did Washashore. Everyone on this list will surely be keeping you both in thoughts and prayers, I know I will. I don't even have anything else to add. God Bless, Mary Quote Link to comment Share on other sites More sharing options...
michellep Posted April 1, 2016 Share Posted April 1, 2016 Hello Antony! I'm so sorry that you and your wife are dealing with this. Being a caretaker and trying to stay positive is very difficult and I understand. I will be praying for both you and your wife. Please let us know how she is doing and if you have any questions or just want to vent, we are here for you ((hugs)) MaryTD777 1 Quote Link to comment Share on other sites More sharing options...
Laurastone4 Posted April 8, 2016 Share Posted April 8, 2016 Anthony I am 46 and had the same diagnosis at 45 stage 4 lung cancer adnocarcenoma. It was spread to my bones and brain area. I had radiation to the right lung and brain area. I have been on two different types of chemo and now am on opdivo. My cancer is responding really well to the opdivo please make sure to ask the doctors about it. The cancer is now completely gone from my bones and everywhere but my lungs and the tumors in the lungs are shrinking as well. Sent from my iPhone using Tapatalk Quote Link to comment Share on other sites More sharing options...
marc9338 Posted June 22, 2016 Share Posted June 22, 2016 Antony, I am 38 and diagnosed with Stage 4 Lung Cancer last week. It has spread to my pelvic/femur/spine. I've only had minor pain to this point and am waiting on bone biopsy results to come back. It seems like an eternity waiting, but I've made a choice... to fight and to live. I am in North Dallas. If there is anything I can do for you or you need any resources in the Dallas area, please let me know how I can help. Marc Quote Link to comment Share on other sites More sharing options...
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