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Everything posted by PCW

  1. Lou, Didnt have a whole pie of pizza, just three slices😑
  2. Hi Everyone! Would like to share some good news. Went for CT scan yesterday. Results turned out very good, pleural effusion is gone, clusters of spot in my liver have almost disappeared. There’s no progression on my spine and ileum either. My oncologist decided on maintenance therapy which was started last Tuesday. Got the usual: a day intermittent hiccups and fatigue started on Thursday and continued through Friday. This morning I woke up feeling refreshed! The whole ordeal started November last year with persistent cough and here I am in August still alive and well. Hope this can serve as encouraging news for patients diagnosed with stage IV lung cancer. I hope everyone is well and do your best under any circumstance. I’m saying that to myself every day: I’m really doing my best! Paul CW
  3. Hi Tom Love pizzas too, wish I could eat a pie and my problems go away.
  4. Hi Brian and Judy, Thank you both for your info earlier. Brian, I am trying my best to eliminate as much refined sugar and cholesterol as possible from my diet( which is easier said than done) both are known to fuel rapidly dividing malignant cells. I eat only resistant carbohydrates which are supposed to maintain a steady blood sugar level. And Judy, I’m still searching for a integrative oncologist . Been calling up different places. I figure that a second opinion wouldn’t hurt especially I am a stage IV patient. I am really curious if any of these so called ‘repurposed’ drugs can help keeping my cancer in check or if they can exert synergistic effects with the maintenance chemo I’ll be getting. I guess I’m willing to try anything at this point!
  5. Hi Lou, Thanks for your response. I’m scheduled to have a cat scan in about 2 weeks. I totally agree with you; there are all sorts of information (misinformation) on the web but personally I pay attention to the more prestigious sources. We have some advancement in cancer treatment but unfortunately there’s a great deal we don’t understand because of the complexity of the disease. BTW, even though integrative oncology is a relative new field, the service is provided by licensed oncologists. They are employing an additional strategy in conjunction with the standardized conventional protocols. The theories behind it sound quite logical and that fuels my continuous searching. Paul CW
  6. Hi Shannon and Daniel Welcome to the forum. Sorry you guys are going through such a hard time. I can almost say I know how you feel cause back in March I was given the same diagnosis : stage IV NSCLC which has metastasized to multiple organs including my spine, adrenal glands, liver and bones. I’m very hopeful now after just finishing 4 cycles of triplet : carbo, Alimta and an immuno agent named Keytruda. I experienced the triple SE to the minimum, with fatigue and hiccups as major ones . My initial plural effusion was basically gone after the first cycle of chemo. I know every patients case is different and your oncologist might try a different approach, but I’m relating to my experience. Things might look bad but please remain hopeful! Best of luck and take care! Paul CW
  7. Hi Everyone! Been a while since I posted last time. Would like to give a little update: I just finished my 4 cycles of triplets for my stage IV NSCLC. Will resume maintenance therapy in August presumably with Alimta and Keytruda without Carbo , indefinitely. Fortunately, the almost only SE I’m experiencing is fatigue. My oncologist said it’s due to the accumulated effects of chemo. My blood works show bone marrow depression so she cancelled the 5th and 6th cycles which were initially planned. For the past few months, I started researching on the internet and Mr. Google (as many of you would have done ) I read 2 books that are particularly impressive: ‘the cancer code ‘ by Jason Fung and ‘how to starve cancer ‘by Jane Mclelland . Both books advocate alternative medicine (in conjunction with conventional protocols) emphasizing the use of herbal medications , dieting/fasting , nutrition and the use of ‘repurposed medications’. Basically, the repurposed drugs are a list of prescription drugs out of patents that have shown evidence of anticancer/ anti tumor effects in studies. Many trials and studies are discussed in PubMed. At the moment, I’m searching for an integrative oncologist for consultation. As mentioned earlier, I have an ERBB2 mutation and up to date, only a few phase II clinical trials are available. Since I have multiple organ metastasis , so sad to say time is not on my side. I’m wondering if any friends here on this forum have any opinion or insight or perhaps any experience regarding this so called integrative oncology and any input is greatly appreciated. Meanwhile, I hope everyone is well ! Paul CW
  8. Hi Everyone, I did get my Keytruda the following Tuesday. Didn’t get ( thank God) major SE except a little vertigo. I’m scheduled to receive my next round of chemo on the 18th. I never imagined before I would look forward to receiving my chemo. This time, I will get all three agents on a single day. Lou, my hiccups would stop once decadron is D/C so not a major big deal for myself. I know Lexie is undergoing her clinical trial at the moment and I sincerely hope the best for her from the bottom of my heart! Meanwhile, hope everyone’s taking good care of her/ himself! Till next time. Regards to all. Paul CW
  9. Hi Everyone! how are you folks? It has been two weeks since I put in a post and would like to bring a little updates. Finally, last Monday, I was started on my 3 drugs regimen. My oncologist noticed that my SOB had worsen. He decided to give chemo over the course of three days: Day1: alimta and half a carbo dose. Day2: half the remaining carbo dose, then go to have a cat scan to see how bad my MPE had spread. Day three: the miracle drug Keytruda whose commercial has promised a nice barbecue with family. After the second day, I was called to reported to ER ; cat scan showed almost entire opacity in my right lung with plural effusion. I was admitted in the hospital for 2 days for another thoracentesis. This time they managed to draw out 2 liters with remaining pockets of water still scattered (locular) in the right lung. Yesterday I was D/C from the hospital and didn’t have a chance to continue my keytruda. Monday I need to follow on my oncologist appt. During the hospital stay, a couple of things had been mentioned: pleurodesis , which is an injection of a sclerosing (usually Doxycycline or Talc) in between the pleural layers, causing adhesion( sealing off) of the layers. Heard the procedure is quite safe. Judging from the aggressiveness of my MPE, I think this is a very valid option for me. So next week I’ll be busy meeting a pulmonologist! Another interesting thing that came up during my chemo was that decadron gave me hiccups! This is not a bad trade off for N & V which I experienced none! Dr . Google has an article on this topic, and it’s only happening to male patients! http://www.kantrowitz.com/cancerpoints/hiccups.html Regards to everyone Paul CW
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  11. Thanks Lexie, will ask my oncologist next time
  12. Hi Everyone ! Came back from oncologists appointment; clinical trials for ERBB2 mutations are still in phase one so she doesn’t recommend it. Her treatment plan is alimta with carbo plus Keytruda. Shella, you are right, when PDL1 is less than 1%, it’s indicated to be used along with other chemo agents. My next hurdle is to get Keytruda approved from my insurance. Since I have a few insurances, it takes a while to navigate through them. Now I’m being prepped up with B12 and folate to prevent toxicity from alimta. My first chemo administration will be somewhere next week. Overall, my oncologist said it will improve my quality of life even though the aim is not to cure. She also referred me to a palliative pulmonologist. So far, I feel so blessed with a good oncologist and not to forget, the valuable info that I have obtained from this forum. Thanks everyone! Regards
  13. Hi Lexie, Thanks for your heartfelt message. I will keep you and everyone posted of my Tuesday appointment. Meanwhile, let me sincerely wish the best for everyone here.
  14. Dear friends on the forum, A wave of mixed feelings has suddenly taken over me. With all your encouraging messages, I feel glimpses of hope to live on. On the other side, I feel like I’m coming towards the end; the idea of buying a one way ticket to Oregon has come back... I should go on a clinical trial to benefit possibly myself and others, but I had spent a life time preparing chemo meds for other patients. I’m totally insignificant in that sense when I see so many front line health care works sacrifice their lives for the covid crisis. I see myself as a covid statistic since because of It, I delayed my visits to the doctors. My mixed feelings include a sense of betrayal; but I don’t know exactly who has betrayed me. Growing up partially as a Christian and now suddenly I proclaim to my few friends (who know my situation) a atheist. I think I’m subconsciously trying to justify my idea of euthanasia. Tuesday is my judgement day I guess; my appointment day to the oncologist for a treatment plan. I still have to figure out a way to tell my siblings....... Regards to all of you
  15. Hi Lexie and everyone, My cough is better controlled with both hydrocodone/homatropine and Robitussin DM. than using either alone. I take them alternately. What also helps me is clonazepam 0.5mg which I take at bedtime , gives me a good night sleep.
  16. Hi Shella I think Keytruda is indicated for PDL 1 positive, if I’m not mistaken. Certainly I’ll keep you and everyone posted . Best of luck!
  17. Hi everybody, Been a while, waiting for my mutations result. Finally came today, I have ERBB2 mutations. My oncologist said target therapy is off the table, I have no EGRF mutations. She has to work out a treatment plan for me over the weekends and will see me on Tuesday. In the phone conversation, she mentioned about clinical trials. I’m lost...
  18. By the way, have to wait till next Thursday for my EGFR mutations results .
  19. Hi Everyone, kristin, my oncologist just prescribed hydrocodone and methyl prednisone for my SOB and cough. Hope these will do the trick. At the pharmacy, outta curiosity, I inquired the cost of 30 pills of Tarceva: $18000 per 30 pills😬?!
  20. Hi Everyone, Thank you all so much for your up lifting messages. Special thanks to Lexie, I just made a phone appt to apply disability benefit. I’m entitled to almost the same amount of benefit as the social security benefit when I turn 62. That would be a big help with the cost of chemo or target agents since my insurance doesn’t cover the entire amount. I still haven’t got the result of my EGFR mutations yet, Mount Sinai is taking its time. My oncologist through the help of a radiologist assured me that there’s no sign of breakage in my spine and bones, yet. After consideration, I think I owe it to myself to give it another try. I ‘ll probably seek palliative care along with my prescribed treatment, all on hold waiting for the result. I’m not complaining, but the most distressful symptom is my Shortness of breath; I walk the pace as a 90 year old, can’t climb a flight of stairs without whizzing. I anticipate worse symptoms to come but I’ll try my best 🙂 to deal with them. Regards to you all..
  21. Hi Everyone, Lexie, thanks. Your advice makes a lot of sense. Two years ago, I got an episode of major depression, caused by various factors. One contributive factor is my decreased right eye vision due to Macular pucker, which led to my early retirement . I suddenly realized the importance of good health in order to have good quality of life. Right now, my most debilitating symptoms are shortness of breath and persistent cough. I actually have had a few episodes of coughing syncope due to overstimulation of the vagal nerve . Now my coughing is somewhat under control with the non narcotic combo promethazine/dextromethorphan and a beta blocker. Unfortunately My cancer has metastasized to multiple organs. A couple of months from now, I might be paralyzed or wheelchair bound. Cancer is in my ilium, sacrum and spine. Or It might spread to my brain, and a sound mind is one of the criteria to seek “physician assisted suicide’. It’s also in my liver and adrenal glands. This is just a reality check and I’m just wondering if a pill of Tarceva is enough to stop its progression. I feel like I’m at a point where I have to make a decision, with no turning back..... BTW, ‘poorly differentiated cells’ tumor is more treatable by comparison.
  22. Hi TJM, I’m afraid to offend anyone here, but I need to clarify this: the reason I want to move to Oregon is that ‘physician assisted suicide’ is legal there.
  23. Hi Everyone, Judy, thanks for your advice. Tom, thanks for your ‘booster shot of hope’. Just got back from oncologists appt: doesn’t look good at all. We are still waiting to see if I have EGFR mutations. Other than that, my malignant cells are moderately differentiated. It basically means that my cancer is moderately aggressive. But alas! It has metastasized every where: my adrenal glands, liver, spine, sacrum, nymph nodes and my left lung. MD said without treatment I would have approximately 6 months to live. So far my brain is intact, that’s why I’m writing this message to you guys now? There’s a strong possibility that I’ll be on Tarceva if i have EFGR mutations and I doubt if it’ll help . I’m also considering palliative care so to escape the debilitating effects of chemo. My mind is so overwhelmed now, been thinking a lot about moving to Oregon. Pardon me for any typo or grammatical error, I’m just typing anything that comes out of my mind.
  24. Hi! Thank You all for sharing your experiences and valuable info. I am anticipating my oncologist’s appt tomorrow. Hopefully ,with all results, I can have my treatment plan and a deep look into the pros and cons with a lot of emphasis placed on the quality of life. I don’t have any genetic info regarding my cancer yet. My parents both lived till 90, died from dementia and CHF. I never smoke and ‘drank’ more than a couple of beers occasionally. But I am mad at myself for not being protective to myself. Before retirement, I had spent a couple of decades mixing chemo preparations as a chemo pharmacist. At the time, regulations were more relaxed. Half opened hoods were utilized where approximately 30% of the recirculated air would escape out of the hood. I have just been advised by my psychiatrist not to contemplate the possibles causes of my cancer since that can only bring on negative feelings. Once again, big thanks to all your replies!
  25. Hi Everyone, I am a 60-year-old new retiree, have just been diagnosed of adenocarcinoma in my right lung. Malignant cells were found in my pleural fluid. My oncologist said base on that finding I have stage 4A . I’m now waiting for results of my biopsy, pet/ct and MRI of my brain. I have very mixed emotions, sometimes angry, resentful. I feel terrified of the prospect of losing my independence as an individual.
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