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Tom K

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Everything posted by Tom K

  1. Tom K

    Test results

    When I grow up, I want to be just like you.
  2. Hello All, I haven't been very active on the board lately but I’ve been moving on with my life and trying to come to terms with all that has happened over the past 3 years. Yes, I’ve officially made it 3 years past diagnosis. The people on this board were a tremendous source of hope over that time. Your posted profiles and many stories helped me believe it was possible to beat this disease. During my routine checkup my PCP mentioned that my RBC was 4.2 which finally put it back in the normal range. She showed me a screen which tracked my RBC for the past 2 years and how it gradually increased from a low of 3.0 shortly after I completed the consolidation chemo. She has been giving me B-12 for a year and she seems to think increasing my RBC will give me more energy and maybe help me get past this depression I’ve been dealing with. My question is for other long term survivors. How long did it take for your RBC to return to normal after chemo? I guess I’m just curious if I’m still following the “normal” recovery pattern for LC.
  3. Check the terms of the policy. You may be able to pay the doctors yourself and then file a claim directly to the insurance company for reimbursement. Some provider offices will bill you with a net 90 invoice that allows you to delay payment while you are waiting for the Insurance company to process your claim and send you the check. In these types of scenarios it is your responsibility to contact the insurance company to see if the treatment, test or procedure is a covered benefit and at what rates. You should talk with the Office Manager at the providers office and with your insurance company to see what your options are. Good Luck.
  4. Tom K

    coughing

    Hi, I also had a cough after treatments. It turns out it was caused by a drug called Lisinopril that I was taking to control Blood Pressure. Ask your doctor if any of her other drugs could be causing the cough.
  5. Hi Snappy, I had a PET scan about 6 weeks after surgery and it revealed cancerous lymph nodes that were not apparent on a PET just 8 weeks earlier. That PET scan provided the location of the nodes and the doctors were able to treat them with radiation and chemo. You may want to ask your doctor if another PET would help in your husband’s case and if additional radiation is even an option.
  6. Tom K

    Aaron

    Julia, No words will ease your pain. But please know there are many who share a small portion of your grief. Aaron was a strong man who refused to let his disease keep him from his goals. I admired him greatly.
  7. I am sorry you are here Kristina. It does sound like your Dad is having a tough time of it but I am glad you took him to another doctor. With this disease you have to be assertive and if you don’t get help from one doctor move on to another until you are satisfied that everything that can be done is being done. Depression is pretty common amongst us cancer patients. He should ask his doctor about an anti-depressant. A lot of the members of this community have had great results with them.
  8. I also had similar treatments. I drove myself to and from the radiation treatments 4 days a week and my wife drove me on the day I had chemo (the Cancer Center insisted I have a driver). My experiences with chemo were just like Ned’s; sleepy while I was receiving it ( because of the Benadryl ) then wired for a day and a half with the steroids. One of the pre-meds I received was Aloxi for nausea. It worked great and I never had any real problems except hiccups which would show up about 2 days after chemo. After 4 weeks of concurrent chemo-radiation, my energy levels dropped noticeably and I would take naps just about every afternoon and still sleep 8 to 10 hours a night. But I was still able work 6 hours a day (I would take off early every day and get radiated on the way home). Your husband’s treatment is difficult but doable.
  9. Hi Vernon, I also had a lobe of my right lung removed. The surgery was followed by chemo and radiation therapy. I’m still cancer free 2 years later. If your surgery was to remove a NSCLC (Non-Small Cell Lung Cancer), you may want to ask your doctor if there would be any benefit in receiving adjuvant chemo therapy. I have read that is the standard of care for anybody who has had surgery for stage 2 NSCLC or higher. Some doctors also prescribe that treatment for stage 1b NSCLC. Either way you really should ask your doctor about it. Good luck and do not hesitate to ask lots of questions here.
  10. Frankly, I’m so glad to be cancer free that my other health problems seem minor. I’m still recovering from a bout of depression, but I choose not take meds for it and rely on my faith instead. Like a lot of folks in their 50s, I take maintenance meds for blood pressure and cholesterol. Right after I finished treatments in 2006, I started having a lot of joint pain which got progressively worse. So now I take Celebrex daily and I have Tramdol for the really bad days. Interestingly, for the past 6 months I’ve been faithfully exercising 3 to 4 times week and I think that has done more to reduce the joint pain than the meds. My blood sugar was high back in August and I was officially diagnosed with type II diabetes a few months ago. I started Byetta in November and I have lost 15 lbs. I had to switch to sugar free dark chocolates and make a few other dietary changes but I have it under control. As I said, compared to some of our friends here, my problems are minor and not a lot different than a lot of guys my age. My doctor said that if I lose enough weight, I may be able to control my diabetes with just diet and stop taking the Byetta. Are there any diabetics here that have been successful at doing that?
  11. Sorry you are here but you are welcome and please don't hesitate to ask questions.
  12. I can’t explain the science, but my doctors told me concurrent chemo-radiation my best chance for achieving a cure. 2 years later, I am still here to testify to their success.
  13. I agree with Rich, you need to get a second opinion.
  14. Hi Kelly, I also had and upper right lobectomy. My experiences were very similar to the others that posted here. I had an epidural inserted before surgery and it stayed in for a couple of days which made the pain tolerable. After surgery, the doctors inserted a chest tube to drain fluid. It was very uncomfortable. The chest tube was removed after 3 days and I started feeling much better very quickly. It is important to cough up the mucus in your lungs after surgery. Coughing was painful even with the epidural, but it was doable. Some people found hugging a pillow helped them. I continued taking oral pain meds for about 10 days after surgery then found I no longer needed them. I did all the breathing exercises frequently and I started walking for a ½ hour a day about 2 weeks after surgery. I was able to go back to work about 4 weeks after surgery ( I work in an office). After surgery, I received concurrent chemo-radiation treatments which were a lot more difficult than the surgery. Today, I still have some minor residual nerve pain that runs along a rib from the scar to the front of my chest. It is not so much pain as it is sensitivity to touch. I am told this is very common. For the past 14 months I have been very conscientious about doing aerobic workouts at least 3 times a week (for weight control). The aerobics have had a huge impact on my lung efficiency. A PFT in December indicated my lungs are now at 104% of expected efficiency. So 2 years after surgery my lungs are not causing any limitations to my life. I strongly recommend you agree to the surgery. It is your best chance for a cure and in the long run, it should not greatly impact the quality of your life.
  15. Glad to hear you are doing so well and that there is no more cancer. Yes, it will take some time to heal and recover your stamina so enjoy some relaxation and take some quite time for awhile.
  16. I had very painful esophagitus after about 25 radiation treatments. It was about a month after treatments stopped before I was able to eat solid food. For about 6 weeks I lived on milkshakes, runny eggs and other extremely soft food. All together it was more than 2 months after treatment stopped before the pain was substantially gone.
  17. I am still cancer free and I just celebrated 2 years since diagnosis. In my case, metastatic cancer was discovered after the surgery. So yes, first line treatment with radiation and chemo can eradicate cancer.
  18. Tom K

    2 Years

    Yesterday was my second anniversary since diagnosis. Thank you all for the support, help and hope you have given me over the past 2 years.
  19. My pulmonologist ordered a PET just 5 weeks after surgery. That PET revealed metastatic cancer in the lymph nodes in my mediastinum (which was not detectable just 6 weeks earlier). The lymph nodes had not yet enlarged so an x-ray would not have detected them. My doctors were able to identify, treat and resolve metastatic cancer because of that early PET scan. They have had me get CTs or PETs every 3 months for the past 2 years. While there was one false alarm (very scary), overall this schedule has reduced my anxiety tremendously. I strongly recommend frequent CT or PETs. They may find metastatic cancer while it is still treatable (as in my case) but at a minimum, the frequent scans will provide you with peace of mind. Incidentally, I was informed just yesterday that I am now on a 6 month schedule for scans. I gather this is the norm for follow up treatment.
  20. I’m Tom and I am coming up on my 2 year anniversary since diagnoses. This past summer, my little girl died from heat stroke. She was only 23 years old. Rina and I are trying to go on with our lives, but this struggle is so much harder than our battle with cancer. I pray every day that God will help me understand why there has to be so much pain in this world. I have not been very active on the site lately, I tried, but it is just hard for me to help others right now. Tracy’s death seems to overshadow everything in my world. I know it will take more time to come to terms with our loss and that the first Christmas without her will be particularly difficult. But, I believe in the power of prayer and I thank all of you for your support and concern.
  21. If there is no metastatic disease outside of your left chest, your physicians may recommend surgery to remove the lower lobe of your left lung. As you probably already know, evidence indicates it will offer you the best chance for survival. It is a difficult surgery and it may take you several weeks to recover if they do a standard thoracotomey. If surgery is an option , you should ask your physicians if you are a candidate for a Video Assisted Thoracotomey (VAT). I have read that this is a less invasive procedure that reduces the recovery time and the pain associated with surgery. If your cancer is 1B, you may or may not be offered adjuvant chemo therapy. There is some controversy as to whether the risks of chemo are worth the small survival advantage seen in patients with 1B disease. You may want to do some in depth research before making decision about wheather or not to request adjuvant chemo. Whatever you do, please get a second opinion. You will be making decisions about the quality and quantity of your life. Most of your second opinion physicians will likely agree with your primary (all of mine did), but you will feel a lot more secure knowing you sought all the possible options. It’s like flying an airplane; you can do it with 1 engine, but it feels a lot safer with 2. Lung cancer is a very scary disease and you are already feeling the anxiety. Donna and Cindy are right to suggest you have somebody to confide in like a spouse a close friend or even a therapist. Good luck to you and please do not hesitate to ask questions of this group. They understand what you are feeling and the choice you have to make. They have first hand experiences with some of the therapies you will be offered. I know they helped me get started on this journey and they helped me keep my sanity when I thought I would go crazy with anxiety and worry.
  22. I am not a doctor, I have not played one on TV and I have never stayed at a Holiday Inn Express. Most everything I know about medicine I learned from the internet or watching medical shows on TV. So consider the source when you read this. But, I think the radiologist who wrote that report is indicating that there is something in your lung but it is probably not metastatic cancer. It could be an infection or inflamed tissue of some type. A 2.9 cm mass is a little on the large size. As I understand it, If it was cancer, it would probably have a much higher SUV than the 2.5 that was reported. My tumor was 3.4 cm and the SUV was 12.5. When it metastasized to the lymph nodes in the center of my chest, it was only 1.2 cm in each node, but the SUVs were at 4 and 5. Now having said all that, you should definitely talk to a real doctor and get a real medical opinion. Randy is correct, Dr West would be the best source to get a quick interpertation. I hope you can relax and enjoy the holiday weekend.
  23. Thank you for sharing. You are right, I think only people who have been through something like this can fully understand the depth of the fear and the joy of each milestone in this battle. Give you Mom lots of hugs.
  24. Welcome. I know how you feel; the initial diagnosis is pretty scary. The great thing about this group is that there are so many survivors here. Like, you, finding this group gave me hope. Please do not hesitate to ask questions. The other great thing about this group is that somebody here has probably already gone through whatever treatment you are on and they can tell you about their experiences and what to expect. It makes it a whole lot less scary hearing what to expect from somebody who has actually gone through it. Sending you prayers for peace of mind and a successful treatment.
  25. Your situation is curious and your questions are valid. If your current medical team is not giving you answers or explanations; you should definitely get a second opinion. You should get the report of the surgical procedure that was performed as well as records from your surgeon, oncologist and/or pulmonologist. You should also get copies of all the imaging reports from any PET/CT scans or xrays. Good luck and god bless.
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