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    Lung cancer patient/survivor

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  1. snowmom


    Kinda late on this topic but for what it's worth, I was warned that Keytruda can exacerbate arthritis (in fact any itis). I had arthritis for years before my diagnosis and I had a single knee replacement while on therapy. I have noticed that my arthritis has gotten worse (mostly hands and wrist) after Keyturda; but then again I'm older (yay!!!) so that could also be the cause. Voltaren is good - my hubby picked it up for himself a few years ago in Italy and we love it. Another thing I'm just trying is Nature's Bounty Hemp+ for joint pain. That seems to also be pretty good. I've thought about seeing a rheumatologist but that's a door I don't think I want to open now.
  2. snowmom


    Lenny, Thanks for the prayers! You are now on my prayer list. Sound like you had excellent results! I'm doing well also. It's now been 3 years since my initial diagnosis and I'm doing really well. I finished my maintenance Keytruda regimen in August of 2020. Now on just periodic follow-up. I see my oncologist every 3 months just for blood work and I get a scan every 6 months. I kept my port so I also go in periodically to get that flushed. My last scan was in November 2020 and all was good, ie, "no change." I have another scheduled for May 5 - hoping for the same result. My only side effects have been small white pimply things on my face, chest, and back that come and go. They really aren't bad (just annoying at my age to have a breakout) and I can control them with hydrocortisone cream and calendula oil so I won't complain. Loved your pic! I really believe it's important for us to share experiences, particularly when we do well, as it can lift the spirits of newbies as well as those who are having a hard time. People need to understand that cancer is no longer a necessarily a death sentence.
  3. snowmom


    Hi Rose, Glad you are doing well. I believe that faith, knowledge, and a positive attitude are important factors on this cancer journey we all share. I also have been on an every 3 week regimen . As background, I was diagnosed in April of 2018. My main nodule was at the intersection of all 3 lobes in my right lung. After discussing it with my oncologist and surgeon, I was scheduled for a pneumonectomy (using VATs). The deal was if they found that the cancer had spread they would just take samples for biopsy then pull out. If they found that the cancer was confined to that one area they would just remove the lung. So, once they discovered the nodule in my pericardium they backed off and just took tissue samples for biopsy. The surgery left a bit of a mess (not blaming -- just how it works) so it's been hard to figure out what's there. My scans have consistently shown no change in the size or density of the area in question and none of the nodules they can see are any different. Everything else (bloods, lung function) is normal to better than normal. I was initially a little frustrated with the "no change" results, but after speaking with my oncologist and the radiologists who have read my scans, we have decided that what we are really seeing is mostly the scar tissue from the surgery. I have looked at every one of my scans multiple times and have been given the opportunity to ask questions of the radiologists directly. I am now comfortable that while I may not have the luxury of a "surgical cure" I am in an excellent place health wise.
  4. snowmom


    Thanks to all who replied. I apologize for the slowness of my response - but it's been a very busy time with lots of good stuff! I continue to do well and will have my 35th Keytruda maintenance infusion on August 5. I've not yet discussed a follow-up program (frequency of scans/blood work etc.) with my doc as I've been seeing the Nurse Practitioners lately. As soon as I have more information I'll let you know. Rose - I hope you are doing well. I started on Alimta + Keytruda after I finished 6 or 7 (can't remember) rounds of Carboplatin + Alimta + Keytruda. Oddly oddly enough the dual therapy had more side effects for me than the triple so we agreed to drop the Alimta and I have continued just fine without it. I do have a question for you, In your post you mentioned that you were going to discuss your ongoing therapy with your doc - what did he/she say? Sashjo - I hope you are doing well. Yes, I was nervous at first, since I know I can never claim a cure because of the nodule on my pericardium, but I'm over it. It was good for me to have some time to live with the idea and discuss it with my doc. I know I will watch myself closely and that I will have a good monitoring regimen in place. Another positive is that, if it becomes necessary, I can go back on Keytruda. Other therapies would also be available to me. Claudia - Glad to hear you are doing well!
  5. snowmom


    I was diagnosed with lung cancer in 2018. I am not eligible for surgery since I have a nodule on my pericardium. I finished my chemo (minimal side effects), now only on maintenance therapy with Keytruda (no side effects). I am mostly stable with some regression. If all continues to go well I will stop Keytruda in July as I will have reached the recommended number of treatments. Anyone here finished out their maintenance therapy with Keytruda?
  6. Any suggestions on what to do for an itchy red rash - probably related to Alimta - on the face and arms?
  7. Thank-you! This is not my first rodeo - I had breast cancer twice but never chemo and I’m trying to make sense of it. By profession I’m a medical writer so I don’t lack for medical information - what I need is the practical. I appreciate you sharing your experience.
  8. Tom, Thanks, Tom. The side effects themselves are not that strange - except for the weird scalp thing. I haven't totally lost my hair. What happens is that there is a sharp increase in hair loss along with the scalp irritation then, as the irritation subsides over about a week, the hair loss also lessens. I was blessed with an abundance of hair so we'll see what gives out first. It's the unexpected onset of the side effects after dropping carboplatin that have me frustrated. At the moment we are chalking this up to the cumulative effect of chemo. I have another infusion on the 21st so I will see if the pattern repeats or changes. What I would like to know from those of you who have been on chemo long-term is whether one eventually develops a pattern of response post infusion - one that repeats each time - or if every infusion brings new surprises.
  9. I have NSCLC in my right lung that is inoperable since I also have a lesion on my pericardium (spread to pericardium is why I'm stage 4). Both tumors have the same genetics so we decided that systemic therapy was the way to go. Some smaller nodules in the right lung but other metastases. I flew through 4 infusions with carboplatin/pemetrexed/pembrolizumab with essentially no side-effects. CT scan showed no progression but no regression either. Started maintenance in September and just had my second infusion without the carboplatin. For the first time, I'm starting to have side effects. They begin 3 to 4 days after my infusion and last for about 5 - 7 days: fairly constant feeling of intense hunger and nausea at the same time, burning scalp irritation with a real bum in hair loss, intermittent gastrointestinal symptoms (sometimes diarrhea, sometimes constipation, sometimes just gas pain), indigestion, mild headaches, and a general feeling that I'm not well. In the grand scheme of things I do feel lucky and I know my side effects could be worse but I am totally taken back by the fact that things seemed to get worse after the carboplatin was dropped. I've been told to plan on 2 years of maintenance and I'm trying to figure out what - if any - pattern I might expect. I know that everyone is different, that things change, and that there are cumulative effects with chemo but has anyone had a similar experience or have any thoughts on what might be going on?
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