Kbellx2 Posted January 8, 2021 Share Posted January 8, 2021 Hello all, I am 52 from Fayetteville, NC and I was diagnosed with Stage IV squamous cell carcinoma back in January 2020. I had been a former smoker, but had quit eight years before my diagnosis. I have been through radiation treatment, chemotherapy treatment and and now doing immunotherapy treatment. I have additional tumors in my hip, L5 vertebrae, liver and in an upper rib bone. I have not been able to work due to the fatigue and brain fog caused by the treatments and movement is painful due to the hip and back tumors. I also have these dizzy spells frequently when walking. I am not really knowledgeable about what my cancer is. As of my last scan, I was told that there was no increase in any of the tumors and that they were less active than the previous scans. All I really know about that is that the doctors seem happy about it, so I took that as a good sign. I was told that the type of cancer that I have is not the type that will be affected by the immunotherapy drugs all that much. They said I only had one marker and they like to see more....whatever that means. The only thing that I know is that I have been trying to make sure everything is in order for my wife when I die since I was told that my condition was terminal and that I would probably pass within 5 years with treatment and if I didn't treat it I had 4-6 months to live, but to be positive because you really can't predict how things will go. I joined because I am trying to learn more about my cancer so that I can plan better for my wife, Link to comment Share on other sites More sharing options...
GaryG Posted January 8, 2021 Share Posted January 8, 2021 Hi: We are glad you joined and sorry about your diagnoses. You come to the right place and we are more than willing to help you. First though don't take what they tell you about life expectancy as gospel. There are new cancer drugs every day that look more and more promising. You need to keep hope and keep fighting. In order for us to help you we need to know more about your cancer. You need to tell us in details the name of the Chemo and immunotherapy you are taking. Your say they told you the cancer you have is not the type that will be affected by the immunotherapy drugs all that much, so why are they giving you immunotherapy? Also when you were diagnosed what type of tests did they run after your biopsy? You say you have one marker. Please tell us the name of that marker. We need answers to these questions in order to help you. Once again welcome and looking forward to reading your answers. Link to comment Share on other sites More sharing options...
LouT Posted January 8, 2021 Share Posted January 8, 2021 Kbellx2, I and welcome to our forum. Sorry that you need to be here and sorry to hear about your situation. As Gary said in his response, the more you can tell us about your condition the more information people will be able to share with you. What we do here is share our own personal stories and experiences and you will find all kinds of folks here with a wide range of experiences with their cancer. Many who would seem to be in dire straights are still survivors and continue to move forward. In my case my treatment was surgical because my LC was caught very early. Your case is different, but there are many here with situations more similar to yours and you will be hearing from them soon. In the meantime, take Gary's advice and don't despair or give up. There are folks here who have had multiple recurrences, late stage diagnosis and treatment failures, but they kept going and are still hear surviving and living and that means you have a chance to do the same. There is some reading that may be able to provide you more information. There is a Forum Track called "Lung Cancer 101" that can be found here. You'll hear from others soon and please don't give up hope. Lou Link to comment Share on other sites More sharing options...
Kbellx2 Posted January 8, 2021 Author Share Posted January 8, 2021 The only other information I have is that they said the PD-L! expression was only 1%. I did four cycles of carboplatin, nab-pacaclitaxel and Kytruda. I am no on the Ketruda for a double dose ever six weeks. Not sure about the spellinf above, just pulling stuff from my treatment notes. Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted January 8, 2021 Share Posted January 8, 2021 LUNGevity offers a variety of support services in addition to this wonderful message board like one on one support, virtual meetups, etc. Here is information if you are interested: https://lungevity.org/for-patients-caregivers/support-services Link to comment Share on other sites More sharing options...
GaryG Posted January 8, 2021 Share Posted January 8, 2021 9 minutes ago, Kbellx2 said: The only other information I have is that they said the PD-L! expression was only 1%. I did four cycles of carboplatin, nab-pacaclitaxel and Kytruda. I am no on the Ketruda for a double dose ever six weeks. Not sure about the spellinf above, just pulling stuff from my treatment notes. Ok now we are on the right track. You were on a triplet (2 chemos and one immunotherapy). We are familiar with Carboplatin and Keytruda but nab-pacaclitaxel does not ring a bell. It seems that you are now on a maintenance regimen with Keytruda. An indication (hopefully) that your cancer has shrunk or remains stable. When you see your oncologist next ask him to give a percent shrinkage of your cancer. That way you know your progress. My PDL-1 is zero so it is even smaller than yours but as long as the drugs are working that's not critical. Another important piece you need to find out. Did they do a biomarker test when they did the biopsy. A biomarker test shows if you have mutations. Some mutations can be treated with pills. If they did a biomarker test and did not find a mutation, ask them to do another one. (hopefully they still have tissue). Sometimes it takes 2 or 3 biomarker tests to find mutations. Link to comment Share on other sites More sharing options...
Babs Posted January 8, 2021 Share Posted January 8, 2021 Kbellx2, Hi, I have the same cancer that you do. Non small squamous. I was on Carbo/taxol and radiation. I then went on immunotherapy of Durvalumab. I had a recurrence and then went on Carbo/taxol and Keytruda. I am also on the Keytruda every 6 weeks for maintenance. I am seeing a radiation oncologist from the Mayo Clinic in a week to discuss precision radiation. I could not have surgery due to the location of the tumor. It is now just scar tissue, but they want to see the possibility of doing the precision radiation to kill any cancer cells that may still be lurking in the scar tissue. Did you have surgery or was that not an option? Don’t give up hope as there are new drugs and treatments being approved all the time. There are others on here that have positive and successful stories. Try to stay positive, Babs Link to comment Share on other sites More sharing options...
Kbellx2 Posted January 9, 2021 Author Share Posted January 9, 2021 Thank you all for your replies and support. They did do A biomarker test but it showed no mutations. I do know that they would need another biopsy to do another test because they have no more tissue. I have an appointment next week to see if they want to do any further radiation treatment. They had originally targeted my main bronchial tube because the was a mass that was impeding my breathing. They did shrink that some and they targeted my L5 vertebrae to lessen my pain and improve my mobility. The treatment did help. I also just had a procedure done on my back to inject cement of some sort to help with the compression fracture caused by the tumor there. It greatly decreased the pain in my back. I did not have any surgery. The mass in my left lung takes up most of the upper lobe they said and I have some smaller masses in the lower section and near the main bronchial tube. So far, my right lung is free of any masses. Also, what can be done to help with the rash and intense itching caused by the Ketruda? The cortisone ointment does not work much and I take Benadryl at night to help me sleep, but it doesn't seem to do much for the itching. Thank you all again. This has been very helpful and enlightening. I really had thought that it was very rare for one to survive past five years as I had found on Google. Link to comment Share on other sites More sharing options...
GaryG Posted January 9, 2021 Share Posted January 9, 2021 Hi Kbellx2: When you were on the triplet they probably gave you steroid. They normally discontinue steroids after few weeks and especially when you are on the maintenance plan. If that's the case then you need to get back on it especially the day of the infusion. I had a problem with itching and the steroids did the trick. Otherwise your oncologist could prescribe stronger medication than Benadryl which did not work for me either. Link to comment Share on other sites More sharing options...
Kbellx2 Posted January 14, 2021 Author Share Posted January 14, 2021 GaryG: I have had some steroid treatments over the past year. I have been given Prednisone for the rash and itching. It does work wonderfully for about a week or so and then it is back to itching and rash. On the bright side, the location of the rash changes when it comes back so at least there is a change. The worst location that stays constant is my upper legs, both front and back. Thank you all for your posts and information. Link to comment Share on other sites More sharing options...
GaryG Posted January 14, 2021 Share Posted January 14, 2021 Kbellx2: If you are tired of pills and ointments, you might try Ice. Yes rub some ice directly on the itch. It worked for me and I hope it does the trick for you as well. Link to comment Share on other sites More sharing options...
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