ToBeGolden Posted December 11, 2012 Share Posted December 11, 2012 COMMENT: Lungevity needs a board for metastasis to the lung. Since there is no specific board, and since most posts deal with primary lung cancer, I will temporarily put my posts here (unless I am making some type of grave error). Today, Monday Dec 10, I got the results from last week's lung biopsy. Unfortunately, the biopsy was positive for lung cancer; the cancer was squamous cell meaning that it almost assuredly had spread from the neck (larynx). The recommendation from my medical oncologist was to watch it with a CT-Scan every 4 months. When it grows to 4 X its size, chemo will be used to treat it. He said that in general cancer cells are killed more effectively by a combination of radiation and chemo; but it is not possible to treat the lung with radiation. To make matters worse, I have a half-dozen nodules, some of these nodules are in each lung. If all the cancer were in one place, surgery or radiation might be possible (I'm saying this). The oncologist said that there are chemo regiments which will effectively shrink the tumor cells. However, these chemo regiments will not entirely eradicate the cancer. I have made two decisions about going forward, and Arlene has agreed with these decisions. 1) I am going to get a second opinion (from another medical center). I am 90% certain that I will get the identical recommendation, but I need a second opinion for my peace of mind. 2) I am going to eat an super ultra-healthy diet. This is full of fruits and veggies; and a very limited amount of sugar and processed carbohydrates. I will post a lot more in the coming day or two or three. Quote Link to comment Share on other sites More sharing options...
dianew Posted December 11, 2012 Share Posted December 11, 2012 Thank you for letting us know the results, and I am so sorry that the news was not the best. A second opinion is an important step. Although my cancer started in the lung, I have had squamous cell twice now - 1998 and 2008. In 2008 (staged 3B) I had the standard treatment for squamous -- which as you know is chemo/radiation, but I am still stable (not cured) after 4 years - although the radiation did a lot of damage to my lung. Afterward I did a clinical trial for a vaccine. I don't know if it had any effect or not as it was a double blind study so no way of knowing if I received the vaccine or a placebo - or regardless, if it even works as the results are not out yet - but a clinical trial after treatment is something else you could check into. The one I took part in had very minor side effects so quality of life was high - which for me was the most important issue. Please keep us posted. Quote Link to comment Share on other sites More sharing options...
carolhg Posted December 11, 2012 Share Posted December 11, 2012 PLEASE DO GET A SECOND OPINION RIGHT AWAY! Carol Quote Link to comment Share on other sites More sharing options...
chloesmom Posted December 12, 2012 Share Posted December 12, 2012 I wholeheartedly agree with your courses of action-a second opinion for nothing if not peace of mind, and of course, a healthy diet will make you feel better and make better decisions, and most important to me-feel like you can do something to improve and maintain your health. Not being a medical person, I don't know what the best plan of attack will be, but I certainly hope you get some answers and get a good action plan going soon. Please keep us posted. I will be thinking of you. Cindy Quote Link to comment Share on other sites More sharing options...
ToBeGolden Posted December 12, 2012 Author Share Posted December 12, 2012 The second opinion will be obtained in January; although I hope to setup the appointment in just a couple of days. I changed my MedAdvantage plan so that the medical center from which I want to obtain the second opinion is within the PPO network. My wife and I are vegetarians. I only mention this because I want to post about my diet. I know there are a lot of hunters on this board. So to sum things up: we don't have to agree (or argue) with every single personal choice. Please accept that my choices are right for me, and I will accept your choices are right for you. (I really hope this is not offensive.) Nothing more need be said. So we have started blending raw veggies. Carrots, cabbage, broccoli, a strawberry and a few blueberries went into the blender. Out came a brown goo. It tasted like watered-down blueberries mixed with sand. Very gritty. My wife had one spoonful. I ate 10 oz. I may not repeat today; but I will repeat tomorrow. If nothing else, my diet will have an entertaining value. You should tolerate my posting it just for the laughs. And if your asking: Yes, the diet is a mixture of desperation and magical thinking. I really hope you get a good laugh. Although I do encourage everyone to eat healthy, I am not pushing my personal definition of a healthy diet. Rick. Quote Link to comment Share on other sites More sharing options...
beatlemike Posted December 13, 2012 Share Posted December 13, 2012 Im glad your getting a second opinion Rick! Sounds like you have good attiude and that always helps. I was always a very unhealthy eater before cancer and I quess I still am but I eat my spinach and drink my green tea and pomegranate juice faithfully every day now. I dont know if they help but it sure doesnt hurt anything. Quote Link to comment Share on other sites More sharing options...
ToBeGolden Posted December 19, 2012 Author Share Posted December 19, 2012 Just to let you know: I made an appointment to get a second opinion about treatment options. It with the head of medical oncology at Seattle Cancer Care Alliance. It is for the first two weeks of January. (Forgive me, but I don't like to post the exact dates I will be away. Our home was burglarized a couple of years ago, and you just don't get over it.) I am on my ultra-healthy diet, more or less. Like all of us. Rick. Quote Link to comment Share on other sites More sharing options...
RandyW Posted December 19, 2012 Share Posted December 19, 2012 good luck.. and always goods to be safe about plans... Quote Link to comment Share on other sites More sharing options...
ToBeGolden Posted January 6, 2013 Author Share Posted January 6, 2013 Well I did get the second opinion: I'll be starting Carpoplatin, Erbitux and Taxotere in about 3 weeks. I think I've developed some edema in the lower back. It is very minor swelling and would not be a problem except that it is painful when I'm trying to sleep. Heat pads help a great deal. I am not eligible for any current clinical trials because of Spondylitis (an autoimune disease). My future (in this life) is bleak. So its a day at a time. Make a list and try to get a few things accomplished. I believe I could have been spared, if aggressively treated way back in 2009. I had cancer; but I was sent to six months of voice therapy and steroids. How much sense does that make? The really sad thing, is nothing will be learned from my demise. There will be no postmortem. No one to look where things went wrong. No one to ask what is wrong with the protocols. If these questions were asked, the lives of others could be extended. But sadly they will not be asked. I don't have a magic bullet. But I do know some positive steps that might be taken. Rick. Quote Link to comment Share on other sites More sharing options...
RandyW Posted January 6, 2013 Share Posted January 6, 2013 my thoughts and prayers are with ya tonight Rick..... Quote Link to comment Share on other sites More sharing options...
Andrea Posted January 6, 2013 Share Posted January 6, 2013 Thoughs & prayers being sent your way. I believe your way of thinking, what more could have been done earlier, has been felt by sooo many patients & their loved ones. Cancer is such a beast, it is unpredictable & the enemy. Hang strong. Quote Link to comment Share on other sites More sharing options...
dianew Posted January 6, 2013 Share Posted January 6, 2013 Rick - am glad you got your second opinion. Unfortunately the start of your treatment, or lack thereof, at the very beginning is far from uncommon. It is a story many of us know, and it is sad and frustrating that it takes so long for things to change. You didn't say if you would be getting your treatments in Seattle? I went to the Seattle Cancer Care Alliance (SCCA) for 2-1/2 years for a clinical trial. In hindsight, I wish I had gotten a second opinion at a larger cancer center like SCCA at the onset of my dx. I don't live anywhere near Seattle, but live in a small town in So. Oregon and we have one oncology group - no experts in any particular cancer fields - and no cancer center. For any major cancer center you either go north to Portland/Seattle or south to the Bay area. Most of what I learned, I learned on my own on the internet. I so admire your attitude, and I hope the up-coming treatment goes easy for you. I will be keeping you in my thoughts and prayers. Quote Link to comment Share on other sites More sharing options...
JocelynM Posted January 8, 2013 Share Posted January 8, 2013 Rick, I, too, felt that my life was all but over. But, in truth, none of us knows how long we have and I have already outlived 4 of my healthier friends. It is so important to maintain your strength by eating well and also exercise. I would recommend a juicer but don't use lots of fruit. One day at a time is always a great way to live! Best wishes, Jackie Quote Link to comment Share on other sites More sharing options...
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