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ToBeGolden

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Everything posted by ToBeGolden

  1. As of Sept 2012, I have been Dx'ed with laryngeal metastasis to the lungs. My prognosis is also bleak. The only good thing about a bleak prognosis is that it is easy to beat. I am taking to ultra-healthy diet. This is to complement the chemo that's in my future. And a lot of water. I am sure we would have our differences about the details of an ultra-healthy diet, but we can (I think) agree that everyone should eat as healthy as reasonably possible. One day at a time. Rick.
  2. 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.
  3. Thank you. What a life lesson! When told there's only a limited time left, we better started getting stuff on our to-do list done. Of course even without being told, we all really have just a limited amount of time in this lifespan. So we better get going on our own private to-do list. Rick.
  4. Just wanted to welcome you to our group. I'm also new here, and therefore do not have any specific advice. I have found these boards to be very supportive. Rick.
  5. Yes, we are here to support one another. Posting does provide a form of relief. I am a patient. Metastases from the larynx to the lungs. Things don't look too bright for me either. But all we can do is face every day, and try to extract a little happiness. By the way, I think that cancer is often more hard on the caregiver(s) than on the patient. Rick.
  6. Want to welcome you to our little group. Unfortunately, I don't have and information or advice; my road was too different than yours. Rick.
  7. 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.
  8. ToBeGolden

    Celebrating!

    Your story really gives me hope. There is so little about metastatic cancer that I get the feeling no one is fighting it. Even my oncologist just said the biopsy showed metastasis to the lung. See you in four months and walked out. No treatment plan; No nothing. No wonder a guy gets down sometime. I am planning a second opinion. And your story gives me hope to push on. Rick.
  9. Some Trivia: Mitochondria are cell components (cell organelles) rather than a cell type. Mitochondria are more like nuclei (cell component) than erythrocyte (red blood cell). Most cancer cells has dysfunctional mitochondria. Test tube and animal studies are encouraging. However, they do not always directly translate to human treatments. There is always questions of absorption, elimination, and changes to the chemical/substance within the body. It is always preferable to wait for "clinical proof", when that is possible. Unfortunately, many patients (including myself) time has run out. The path the medical community has me/us on is short and painful. So who would blame me (and patients like me) for clutching at straws? Rick.
  10. That your father passed at home with family is a blessing. With this Beast, we have to be grateful for every little thing. Unfortunately, I find myself on the same road. I feel sorry for my caregivers, the grief the Beast does and will cause them. I'm sure one of the things that most bothered your father was the heartache that his disease cause to his family. Rick.
  11. I am a patient. However, I believe that my wife/caregiver has a harder road to travel than I do. Every word of encouragement is appreciated. Thank you for posting. Rick.
  12. 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.
  13. As I've posted on other threads: I'm trying to increase the amount of veggies and fruits every day. In my plans is to use a blender to break down the cell walls and eat more of the veggies raw. When I cook veggies, I use a small amount of distilled water. When the water cools, I drink it. Going overboard is preferable to going nowhere at all. Rick.
  14. 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.
  15. I am also new to this board. I am waiting for biopsy results to "prove" that my larygeal cancer has metastasized to the lungs. All I can do is improve my diet. I will post more about my diet on a separate thread. However, it is nothing weird or spectacular. Just a well balanced diet with eliminating the majority of junk foods. I hoping that getting into the best shape I can possibly be in, will best prepare me for chemo or whatever else lies ahead. Rick.
  16. I'm going to take a shot at explaining a collapsed lung; then I will look the information up and correct my explanation if necessary. (I know that's backwards; but very me.) Under Normal Non-Diseased Conditions: The lungs sit in the chest cavity. When the diaphragm moves down, the volume of the chest cavity increases, and the pressure exerted by the air trapped in that cavity pushing on the lung decreases. Since the pressure pushing on the lungs from the chest cavity is less than the pressure of the atmosphere air arriving from the mouth nose, air flows into the lungs. The chest muscles provide the force to push the air out of the lungs. Under Best Conditions: The hole made by the needle biopsy heals immediately. However, sometimes the hole does not heal, so there is a leak between the air spaces in the lung and the air of the chest cavity. Under these conditions there is no pressure difference between the pressure at the mouth and the pressure pushing on the lungs. In other words, the pressures inside the lungs "leaks" through the hole making the inside and outside pressures equal. There is no pressure difference to force air into the lungs. If the patient has two marginally good lungs (which was my case), the patient can breathe with the unaffected lungs. (No sports activities.) After all, a lung is removed for some cancer patients. The pain is very well controlled with a small amount of hydrocodone; pain was not a problem at all. I had a chest tube from which a small amount of blood and gunk was leaking for about a day. I will need to ask whether the tube was in the lung or just in the chest cavity. My guess it was in the chest cavity. The hole in the lung heals, like any wound. And the lung works once again. I didn't notice anything. However, I was on 2 litters of oxygen while in the hospital. So I guess the extra oxygen compensated for not have one lung functional for a time.
  17. Back home after biopsy. Anesthesia (Due to Myclonic Jerks) -> biopsy -> lung collapse -> overnight in hospital -> clear liquid diet (bah!) -> can't pee -> catheter at 2 AM -> still can't pee -> catheter again at 7 AM -> finally can pee (yippee!) -> hole in lung heals -> home -> sleep -> sleep -> sleep -> finally awake. Pulmonologist said he took a lot of sample; he said he hoped they would be "adequate". Results Monday from Medical Oncologist. Told not to cough for fear of reopening hole in lung. Usually have coughing fits. So on lot of narcotic cough medicine. Coughing almost reduced to zero; but knocked out. Okay state for a couple of days. Better than risk injury to lung. Very muddy thinking today. Won't drive or use sharp tools. Rick.
  18. Thank you for the link to the article. Although very interesting, I think I'll just sleep on it. (Sorry, Just couldn't help myself). Rick.
  19. If I didn't mention it: I'm scheduled for a needle biopsy of the lung next week. I should have the results by the end of the week. Thank you for all your support. So I will soon learn whether I am a true member of this little group or merely a fond admirer. Rick.
  20. I don't blame him. I would like my dollar back too.
  21. I have just what you need: a two-headed coin. Flip it and call heads if you want a positive result. Call tails if you want a negative result. Rick.
  22. Bad News: My repeat CT showed that most of the seven lung nodules had minimal growth over a 6-week period. So I'm scheduled for a lung needle biopsy next week. I was hoping that the stuff in the lung was aspiration pneumonia, but it does look like cancer. I plan to eat ultra-healthy and follow the advice of the professional healthcare team. Although retired, I keep busy throughout the day. Night is when anxiety raises its head. You've all been there. My insomnia is allowing me to finish reading a number of novels. Rick.
  23. Well, I'm going to offer an opinion out of left field: Kidney Stone. Left Field? Well kidney stones are much more common in men than women. So it is unlikely your mother actually has one. On the other hand, a kidney stone is more likely to form when the person/patient does not drink enough water. Consider this just something to ask your mom's doctors about. Oh Ya: There are treatments for kidney stones. I've had a couple. Rick.
  24. You didn't mention which areas of the brain were treated with the gamma knife. If I remember my course work correctly, parts of the mid-brain (hypothalamus) control hunger and thirst. Where these areas treated? If they were treated, then perhaps you should talk over your mother's lack of appetite with someone in the neuroscience/neurology area. Of course, this is just a stab in the dark. Also, I think it may be important to notice whether your mother will refuse food/liquids completely, or whether she just has a different(lower) point to be satisfied. I believe that there have been experiments with rats, where oblation of parts of the mid-brain made either fat or skinny rats. But once at their new weight "goal", the rats ate to maintain their new weight. Again, I am just advancing ideas that your should discuss with your mother's doctors. These are not meant to be total solutions in themselves. Rick.
  25. If I may suggest: I would ask your doctors the following question: What treatments would likely be started on the basis of the biopsy (or other contemplated procedure)? How you handle the answer to that question is up to you. I'm a refugee from Head and Neck Cancer. In fact, I've had my vocal cords removed. Now I have a half-dozen "spots" in my lungs. When faced with the option of a biopsy, I asked: What treatments will depend on the biopsy's outcome? The answer (in my case) was none. No matter the outcome of the biospy, they would wait 3 months to see if the spots grew. So I opted for not having the biopsy. (I actually saw 3 cancer doctors and two recommended waiting and one recommended the biopsy). Now the decision to biopsy if highly personal. I cannot suggest what you should do. And your doctors in your case may have treatment options which depend on the results of the biopsy. But I think this is a good question to ask. Will my treatment change as a result of the biopsy? Rick.
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