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Everything posted by Jennedy

  1. I was on the triplet, and after the third infusion I hit a wall that I have never back from. Tachycardia mostly. But when your heart rate goes to 140 when you cross the living room, you tend to lose whatever conditioning you had. I don't know for sure which drug did it. But I know it was that third infusion.
  2. @allie0318 I'm sorry for the loss of your father. Please forgive yourself self. My brother was a cardiologist and said sometimes, the patient would wait...for the loved one to fall asleep, get a coffee, step in the hall to take a call. He knew.
  3. I had pleurx catheter placed to drain the fluid from my right lung. I've had it about 5 months. My husband is able to drain it at home. The amount of fluid has finally started to decrease.
  4. Just finished my first. Well, today is day 9. I am scheduled for 3 more. My oncologist seems to think the pain is from the back and forth with constipation and diarrhea. I see a palliative care doctor next week to hopefully sort that out.
  5. @Babs I'm very weak. I also have tachycardia that I just started on meds for. That started before the Taxotere. I'm having pain in my lower abdomin. I hope this trial works for you.
  6. I started this combo last Thursday. I seemed to have missed the prescription for the steroids I was to take the 2 days after. I don't know if that would've changed how I feel. I am very fatigued. I never recovered completely from Carboplatin 6 wks ago. My mouth does have a funny taste. A little diarrhea. No nausea (those premeds help with that). I told my son-in-law that I feel like a ran a marathon. My muscles are that tired.
  7. My tests are normally scheduled at the oncologist office before I leave the office. Obviously, that isn't the case here. I would give them until Monday to kind 9f recover from the blow.
  8. Jennedy

    Lost a friend

    I'm so sorry Tom. Hugs coming your way from OH.
  9. Welcome, although I'm sorry you have to be here. This is a great place. I was like you, very active (marathon walker), healthy, when I found a lump above my left collar bone. That lead to xrays, CT scans, broncoscopies and an eventual diagnosis of Stage IV adenocarcinoma, NSCLC. Turns out the pain my shoulder was cancer, not an issue with my neck. Sounds like maybe you are stage III. Did they do biomarker testing?? I'm assuming they did if they are talking about targeted therapies. Do you know those results? The "curative approach" sounds promising. I had 10 radiation treatments to my lung and shoulder while we waited for the results of the biomarker testing. It resulted in pneumonitis, but did shrink the tumor in the lung and shoulder. I had the EGFR mutation and was put on a targeted therapy, Tagrisso. But that never worked for me. I just finished up 4 rounds of chemo. What we refer to as the triplet- Carboplatin, Alimta and Keytruda. I have scans next week to determine the effectiveness of the treatment. It's hard, but try to stay positive, for yourself and family. And ask any questions you might have. There are a lot of long-term survivors on here. And a lot of people have been through the treatments you will be getting and can help navigate the side effects. Jenny
  10. @Saturn_Bound as Lexiecat said, it depends. I was on oxygen for about 6 weeks due to radiation pneumonitis. (An inflammation of the lungs caused by radiation treatment). Once that was treated with steroids, I was able to go off the oxygen.
  11. I was just searching the forum for this very topic. I had a pleural catheter put in on Feb 10. They got 1 liter. Some issues with supplies etc, and we were draining it once a week. Now increased to 2x/wk. We are getting 400 or 450 ml each time. I'm wondering how long it will take to clear up....or if it will. I just had my 3rd round of carbo/alimta/Keytruda a week ago. I go back to the pulmonologist in 3 months. I admit to not being in a good place this week as a result of the fatigue from treatment (I hope).
  12. Jennedy


    My husband just sent me a link to that yesterday. I told him about this discussion.
  13. I am not allowed to have anyone with me for my chemo treatments. My husband is allowed in for my meeting with the Oncologist or NP. Like the others, my infusion nurses have been great. I was getting an infusion of Zometa every 4 wks, before I started the triplet. Now, they will be combined. I had a book or book on tape, adult coloring book, puzzles with me to keep me occupied.
  14. Could the difference actually be in the scan? How it was sliced or difference in machinery?
  15. @islandgirls i was diagnosed in June 2020 with Stage IV adenocarcinoma with mets to my right clavicle. I started with a targeted medication, Tagrisso, but it didn't work for me. I have since started on chemotherapy Carboplatin, alimta, Keytruda. Before those meds are started I get an IV of steroids and Zofran to help with side effects. Everyone is amazed that I am doing as well as I am. I have had very little nausea. I am tired. I'm not myself. But I am here and feeling pretty darn good. I can enjoy time with my daughters, grand daughters, friends, siblings, mother and husband. My daughters would be angrier with me if I wasn't trying to fight this. I know they will suffer when I'm gone. And I know they don't want to seem suffer now. But they will also help me in any way that they can to alleviate that suffering. In September, I will dance at my youngest daughter's wedding. Cancer be damned!
  16. @islandgirls i am so sorry. I cannot, for the life of me, understand how a child would not want to do everything to keep their parent around. Perhaps, she is reacting based on preconceptions of what treatment will be like and frightened of that vision.
  17. @Kmc try "Being Mortal". But as Bridget says, read the summary.
  18. @Kwally3 i am so sorry for your loss. You have been an excellent caregiver to your father.
  19. Ohio appears to be a cluster as well. Apparently some of the vaccines went bad because a nursing home "ordered too many".
  20. @huj123 The side effects from the radiation are gone now. It took several weeks on steroids. I also wish there was some way other than a scan to see whether or not the therapy is working. Patience has never been my strong suit. I am trying to work on that. Keep us posted!
  21. @huj123 I was 61 when diagnosed with Stage IV nsclc this past June. I had started going to physical therapy for shoulder pain. I had had an xray and MRI of my shoulder and neck and was told it was my neck causing the pain. In the middle of ame back inconclusive. The second was EBUS, which is a broncoscopy guided by ultrasound. We knew it was adenocarcinoma after that. I had a PET scan and that is when it was determined to be in my shoulder blade as well. While we waited for the biomarker results, I had 10 radiation treatments to the main lung tumor and my shoulder. It helped immensely with my shoulder pain. And my lung as well. But I did end up with difficulty swallowing and radiation pneumonitis (kind of like pneumonia but caused by the radiation). Those side effects depend on the location of the tumor in your lung. And minecwas in the right lower lobe. It totally caught us off guard too. Will be thinking of you and your mom. Jenny
  22. Hi Chris, I got that call about 7 months ago. I am stage IV, 61 years old at the time. No brain mets, but it is in my right shoulder blade. I am "lucky" in that I have a mutation that can be targeted. EGFR. I have always been the strong one and the healthy one in my marriage as well as the primary bread winner for the last 5 years. I have 3 adult daughters who were ( are ) in shock. I'm still trying to figure things out. I think I was in shock for the first 3 months. My next scans are in February. This forum was the best thing I found. Lots of knowledge, experience and support to be found here. Keep us all informed. Jenny
  23. My oncologist mentioned the vaccine today, more as a "when it's available you will be willing to take it right?" My guess is he is getting some push back from people being afraid it isn't being properly tested or in general antivaccine.
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