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Well another CT in the bag. Doc said go live your life and I’ll see you in November.

Barb Great news! When I got my news last week I treated myself to a piece of chocolate cheese cake... give your self a treat for the year you invested in Durva. Grahame .. enjoy the wedding and the cake that goes with it . That's really fast good news on you progress. Lindsay ...Hope you get great CT result .. #10 already ..your on your way thanks everyone for the good wishes ..I hope you all enjoy the season Q: What do you get when you combine an elephant with a fish? A: Swimming trunks! Q: Why don’t oysters share their pearls? A: Because they’re shellfish!

Great news Barb. Sitting in chair for # 10 today. Lesion shrunk +\- 50% ,mediastinal nodes reported smaller , mild radiation scarring . Physically doing reasonably well. Looking forward to daughters wedding next month. Bonus as at diagnosis October 2019 that was not a “given”.

Several asked for photos of the cardinals at my feeder. The big male didn't show but juvenile cardinals had a good time learning feeder etiquette. Top bird is a male and bottom is a female. These are newly fledged and mom & dad have kicked them out of the nest while they hatch more. Birdwatching is great fun!

Hi Tracy and welcome. Your husband has lived for 10 years at stage 4! Wow! No reason he shouldn't go on living. I understand wanting to travel, Prior to my lung cancer,, I had a rare gynecologic cancer that was stage 3. I was in a support group where I met several women who had stage 4 ovarian caner and who were having chemo for recurrence.Three women were particularly inspiring to me because of the way they were choosing to live their lives, including travel. One went to China in between infusions and she also continued to ride her horse. Another said she decided to travel because, as she said " If I'm going to fight for my life, it has to be a life worth living". She went on a cruise to the Galapagos, got sick and had to be airlifted out. She said "Oh well, I had good travel insurance." A few months later, she went on a cruise to the Arctic where she took great photos of polar bears. I don't want to recommend going against doctors recommendations, but on the other hand we each need to get advice and then decide what is important to us and what risks are tolerable to give us a good quality of life. This is all the more so if we have a disease that is considered 'terminal"-- whatever that means. Having known these traveling women has made me much less scared of cancer. Hang in there! Bridget O

Hi everyone! We have been doing weekly Zoom meetings on Fridays and I want to make sure everyone who wants to join has the information. There is a different link to sign up each week for either the 12:30 or 5:30 (central times) meetup. You can do one or both. I will post the link to sign up on Mondays for the following Friday. Here is the link to sign up for either time for the Friday, June 19th call: https://doodle.com/poll/u8ypd8kisbi2k2rr If you have any questions, just let me know. Sometimes we just talk, sometimes we play games or have a guest speaker. They are led by the LUNGevity support team so you will either see Katie Brown, Nikole or me - or sometimes all three of us!

Hi Tracy. I'm the worrier of the family also, so I know how hard it is. Our saga has not been going on nearly as long, but after surgery last year we thought the worst was behind us. We had two big international trips planned that we've had to cancel for this year due to the double whammy of COVID with the cancer recurrence on top of it, and we also own a second home outside the country that we can't even get to at this point even if we wanted to. My husband's cancer is squamous also, and he has a MET mutation so he just started on Tabrecta a couple of weeks ago. We were told that as long as he tolerates it and it's effective, he could be on it for years. Hang in there and vent away! I know it helps having someplace like this where we can come for support from others who understand.

Azzy, I am happy to read your update to and know that they will be doing a biopsy to determine whether or not you have LC or some type of infection. I personally, so NOT trust Chest Xrays as fast as being a good tools in diagnosing Lung Cancer. Even CT Scans and Pet scans can only show that a tumor/node may be suspicious for lung cancer. A biopsy is the only test that can conclusively diagnose you. I truly HOPE you may find that whatever you have is some type of benign condition. I think you are very wise to keep a positive outlook and wait for your biopsy results. Additionally, I feel strongly that doctors who NOT be putting a time frame on your life and it makes me upset to think that anyone would make that type of statement at this point in your diagnostic process. It's impossible for anyone to know you "have a good 4 plus years"? Makes me crazy when doctors do this, even with patients who have been fully diagnosed and staged. I am VERY thankful and happy that my Oncologist never did that too me. I have NEVER asked for a long term prognosis and I never will. I truly do not believe any doctor can predict life and how well anyone may or may not do with treatments, especially now that we have so many new treatment options. I have read and heard about so many patients who have been devastated by doctors telling them they only had XXX number of years to live? Grrr!!! I'm very thankful that my Oncologist NEVER did that or ever put any type of time frame on my life. None of us came into this world with an expiration date and no one can predict our individual response to treatment. My Oncologist was wonderful and I loved how she talked to me, she was honest and open, but never scared me or put any time frame on my life. She told me at my first visit that I had Stage IV Lung Cancer and that "currently" we do not have a cure for my Stage, but that we DID and do have several treatment options and that she will continue treat me with every possible option. She gave me hope and that's when I knew I had the right doctor for me. I also told her I was thankful she did not give me a groom prognosis and that I was going to fight hard and plan to beat this! Take care and again, best of luck on your upcoming biopsy.

Hi Gary, As it turns out I am now scheduled for a biopsy this coming mon or tues. My oncologist is not sure if it's cancer or an infection. so we will see what happens. He did say if it's an infection I will not see him again. If it is cancer then I will have a good 4 plus years . I'll take that.... Thank you for the reply....

It must be discouraging to him if he actually throws up everything he eaIs. Is there anything that he likes and can keep down? Ice cream? Has he tried Ensure or any other nutritional drink? Plain rice will sometimes stay down when nothing else will. Has he asked the doctor for something to combat nausea and vomiting? Anything that will get calories in is good. Good luck to you both. Bridget O

Lin: I wish you complete recovery soon and thanks for sharing. Gary

Love to! I went first line into clinical trial stereotactic radiation (very successful) followed with Opvido and Yervoy Immunotherapy. When I asked at 3 month scan which showed enlarged lymph nodes (they said probably inflammation) they told me PDL 0! Doc at time said some people with low PDL do well on immunotherapy and others with high PDL don’t so continue with trial. 6 month PET showed lots of progression. That was my lowest point! That’s when I found out have HER2 amplification Then chemo. Carboplatin and Alimta 4 rounds. Slight improvement Alimta maintenance- some growth still after about 3 rounds. So finally my target drug. Infusions of Kadcyla. First 6 week scan Good! Next scan in August. Hopefully continue with killing tumors Most annoying side effect had been dry mouth and fractured ribs since chemo from steroids. So I have finally accepted I live a slower paced life and will never regain the body I once had. But here and enjoying grandkids and life as it is

Lisa. I have to jump in here. 3 years ago I had knee replacement surgery. It was difficult but even after 8 weeks of therapy I continued to improve ROM. But since then I noticed a lack of cardio conditioning. I never felt SOB but mainly fatigue. I couldn’t walk up hills without help, I struggled on our normal 10 mile bike rides At my annual doctor visits I told him my thyroid must be messed up since I cannot get my energy back. Thyroid fine. 2 years after knee replacement I had a weird cough. At doctor visit I mentioned that -now xrays ct scans Sent to pulmonologist Took months of tests finally biopsy — stage 4 adenocarcinoma! So in retrospect I think my body was saying something is wrong!! Who would think lung cancer??? So here again at time of knee surgery they saw nothing on x rays. I was angry for a long time. I realize I have to let it go and deal with what is. But still my husband and myself sometimes just say “how did this happen?” I guess it’s all in the “plan” We all come to this diagnosis in the beginning saying “why”?? But here we are

Lisa: What a journey. You are quite a fighter and more power to you. X-Ray missed my cancer also so it is not reliable. I am sure now that they located and treated the cancer , your second hip surgery should be just routine. I am assuming that you opted for the 'Minimally Invasive Total Hip Replacement'. If not, it is worth your while looking into it. With this procedure, you should expect quicker recovery time because only a small incision is required, leading to less scarring. In any event, best of luck and thantk you again for your help. Gary

Gary, Here in my area hip replacement surgery still "currently" requires one overnight in the Hospital and then 3-4 weeks of in home PT, I'm currently booked for September and hope Covid is controlled by then, so I'll feel safer in the hospital and having PT in my home. Right now I am not ready and also concerned about having all those people in my home, because we've been to protective of keeping our home safe and very well sanitized and disinfected and have not had people here. I will be having my pre-ops next month along with my next round of CT Scans just before that, so I'm hopeful they will continue to be stable. When I had the first hip done, I was up and walking the same night, which seemed pretty amazing. But, shortly after that I stared having significant pain and I had a really rough time. I was still expecting to go home the next morning and just hoped they could get the pain level down. Unfortunately, that's when I developed the fever and that's when the started running the tests and doing the chest xrays. At first ,they thought I had the Flu and put me on "Precautions", but it came back negative and that's they when started running more labs and also did a Portable Chest Xray in my room. That afternoon, they told me the chest xray showed that I had early pneumonia and they considered it post op pneumonia, most likely related to anesthesia and intubation and said it was something that can "happen" to anyone after anesthesia. Ironically, other than the pain, I felt okay, the fever had also resolved and I had no symptoms of pneumonia or even any cold like symptoms. No cough, no chest discomfort or pain, not breathing issues. I was using my spirometer without any difficulty. My only complaint was horrible hip and low back pain. The bed itself was extremely uncomfortable, and I felt better sitting up in a chair, but simply moving to get up was agonizing. With the exception of the birth of my children, it's the most horrific pain I've ever had. I continue to push to the PT, but every second was misery, but I knew I had to walk and be able to "do stairs' before I could go home. The third day my pain was even worse and my hip and feet were very swollen, they then tested me for a DVT, but all was fine. My bloodwork was all fine too, and we were still waiting on the blood cultures. That day they talked about me maybe have to go to Rehab before home, but I was very much against that idea, so I keep pushing to walk and be up more so I could go home. Early that evening, they removed my IV, as I was then scheduled to go home the next day and start PT at home that afternoon. Unfortunately, I hd another horrible night and the next morning they changed my pain meds and gave me an injection of some sort (I forget not, but it was the most relief I had), but then I ended up being dehydrated, so I needed IV fluids, and it meant I needed to have a new IV put in, oh joy! They had a terrible time trying to start on and after several more sticks they called IV therpay an finally were able to get one started - it was not pleasant, but it was finally in. (This is why I have a port and I'm so thankful to have it)! Even before my surgery they had a hard time starting to IV, so I never liked them. Blood draws are fine, but IV's are NOT! Finally, the the following afternoon, they discharged me to home -- my lab cultures had come back fine, my white counts were fine and the pain was tolerable. I just wanted to be in my own bed and be home. Sleeping in my own bed never did work out and I found I needed to be in a recliner to be the most comfortable. I think it was about three weeks, before I could finally sleep in my bed. It was not an easy recovery. Unfortunately, in my case they never found the cancer then and I had been "misdiagnosed" with Post Op Pneumonia. Three weeks out I had one more follow up chest xray and they then told me it was still "resolving" pneumonia? I had a total of 5 chest xrays between my pre-op and and not once was there every ANY indication of lung cancer or any tumor? Even then they did the urgent head CT scan and found the Brain tumor, we still never initially thought about lung cancer. I had a cousin who had a Glioblastoma about a year before, so my first thought was that I had the same type of brain tumor. I was quickly transferred to a new hospital, but to a Neuro unit and started further testing. The second day there I had a brain MRI and then had the Chest CT and that's when they first say the lung tumor and of course the Pulmonary Embolism - that's when everything changed and then came the Oncologist and ultimately my cancer diagnosis. I have often wondered MANY times, how they missed it on 5 chest xrays and this is why I never trust only a chest xray for diagnosing Lung Cancer. IF they had diagnosed it in February, versus a month later, would it have been found before the brain met developed? If I had not developed the sudden Neurological changes, how much longer would it have been before I was diagnosed? When I did ultimately learn that I had Lung Cancer that had spread to my brain, I was instantly told it was Stage IV and now understand why, but back then I was so confused. How could I be fine one month and month later have Stage IV Lung Cancer and no one saw on those five chest xrays? I was really upset about the fact that it had been missed and it made me very angry to think they missed it that many times??? I've now moved past that and have given up on trying to figure that out. I can't keep wondering about the "what ifs" --- I'm just happy that once it was found that I had an excellent team and that they all worked really heard to get me where I am today. But, I also admit, for me it's VERY scary to have to go through this surgery again and wonder if it will bring out something else, kinds of feels like my hip surgery was a jinx, which I know may make no sense to others, but I know for me it's why I have put off having this second hip done for such a long time. At this point the pain has won over and I can't continue to hobble around any longer, but I DO fear surgery and just HOPE it all goes well. I did not have a good experience with mine and it was really a tough recovery -- but I also wonder if my recovery was "harder" because I also had "un-diagnosed" cancer at the time? Now, I can THANK YOU for your encouragement and now you can help me feel more secure in going through with my second joint replacement surgery. Believe me I know many who've had both knees and hips and they all did well, but I struggled a LOT and that's why I've dreaded going through it again. I am still scared and not at ALL looking forward to it. Yes, I want it over and want to be out of pain, but I know the pain will get worse before it gets better and that part is not going to be easy. To me in many ways my cancer treatment was easier? Go Figure!! Lisa

That’s awesome Barb! I just had my first CT through treatment on Tuesday, and will get my results next week! Grahame, nice to hear you’re seeing results too! I’m doing my treatments every 4 weeks, I go for number 5 next week, which I guess technically would be #10 given I have a double dose. Good luck to you!