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Posts posted by Marcie

  1. The final update on this thread, though I'll try to be more active in other threads and chime in when I can!

    Dad passed yesterday morning around 8:30AM. He was 61. It was very peaceful and my mom was holding his hand the whole time. We'll all miss him so much.

    No funeral or anything to worry about, just doing a simple cremation. We'll have a big Celebration of Life party sometime over the summer. 

    I look forward to keeping tabs on all cancer research developments: I can't wait for a cure.

    Lots of love,


  2. Hi everyone. Just another update.

    Dad is on his final days. I flew home to Indiana and have been helping out my mom. After his stay in the hospital, he had a few good weeks, and for that I am very thankful. 

    I got here last Saturday and he has been deteriorating fast. We are doing home hospice and it's nice he could stay where he is comfortable. He is mostly sedated to keep him from getting scared/sad/confused/agitated, but he has a few lucid moments where we can still see he's in there. We let him know how much we love him and I read him messages from his friends. His buddies from his guitar club called and played for him over speakerphone - it really made him smile.

    Thanks to everyone here at Lungevity for all of the support, love, information, and above all - hope! Not sure what I would've done without you guys. 

    I'll pop back in regulaly and keep tabs on everyone and offer advice to other caretakers when I can. 

    It makes me happy that cancer treatment is moving so fast and that new options are available each day. I can't wait to see what the future holds and look forward to the day no one needs to worry about cancer.



  3. Another update! What a month.

    My dad started on Ibrance. One side effect is that it causes a lot of anemia... which we were worried about since his hemoglobin levels kept getting pretty low. 

    By mid January he as probably sleeping 90% of the day. Wouldn't eat, wouldn't drink. Suddenly he was hardly able to walk. I really thought it was the end. :(  His birthday was January 20th and he asked to stay home for his birthday, but he agreed to go to be admitted to the ER at the VA hospital the next day. 

    He spent a full week in the hospital. His hemoglobin was really low, his kidneys were failing... But by the end of his stay, he was feeling the best he had felt in months. His kidneys are fine again. All the fluids/food/steroids really boosted him up, but he had to get off Ibrance while they tried to get him stable. He also got some radiation to his mets in his ribs while in the hospital and that has taken his pain from a 10 to a 2, he claims. (I think one of the big issues with him not eating/drinking was taking a lot of painkillers and being too out of it.)

    So, for now, he is very clear-minded and feeling good. He's able to walk again (although he uses a walker), his appetite is very good, and he makes sure to stay on top of eating and drinking. (They didn't think the renal failure was a side effect of his chemo, they thought it was because of his eating/drinking/anemia)

    One of his doctors encouraged him to enjoy the time he has left and to not seek further treatment. He said he would advise the same to his own father and that he felt it was best. My dad has decided to go ahead and try to get back on Ibrance (initially at a lower dose) and see how he can tolerate it now that he's going into it with much less pain and eating/drinking well. He's not ready to give up. I think the doctor's advice got him a little down. :( 

    We'll see how it goes! The important thing is that his pain has drastically improved and he is in good spirits. I hope the Ibrance is able to halt or slow his progression.


  4. Hi everyone,

    Another update. My dad went in for his appointment today. They're starting him on Ibrance - hopefully that will slow the progression. There's not really much info about it for NSCLC - primarily a breast cancer drug. They said he isn't eligible for the double immunotherapy they were thinking of. They told him this was the last option they had for him, so I'm hoping he sees some good results.

  5. Hi everyone!

    Just an update - my dad's lung tumor grew 1cm in the 6 weeks he was on Gemzar. So he's stopping that for now and next week he will start on a combo of Opdivo and Yervoy. He did stop responding to Keytruda, but here's hoping this combo works and isn't too harsh on his body. His nurse commented today that he was definitely a fighter and takes every treatment they throw at him pretty well.

    Here's hoping he tolerates it well and gets some good results.

    Happy New Year, everyone!

  6. Merry Christmas to everyone here at Lungevity!

    Not much to update, my dad just completed his 6 rounds of Gemzar and will have a scan on the 28th. If things have been stable, I think they'll continue on it, if not, he'll be trying a combo of Opdivo and Yervoy.

    I think the Gemzar has been difficult for him. In addition to the usual fatigue, he has really bad shoulder pain (feels like the rotator cuff?) that keeps getting worse and really limits his mobility. It has been happening a while and the last scan showed there was no cancer there, so possibly nerve pain or a side effect of the chemo? We'll see how it looks on the next scan and what can be done.

    Glad I'm able to be home and spend the holiday with him and hoping for some good news in 2019.

    Happy holidays to everyone!

  7. Unfortunately, the Keytruda + Docetaxel did not end up working for my dad. Progression in his lung and liver tumors.

    Now he will be getting weekly Gemzar.  Then he will hopefully be entering a trial for Palbociclib. Does anyone have any input/experience with this? Anyone know of other things we should be looking into? Should we be getting a second opinion? I think he's feeling a bit discouraged. :(

  8. Finally an update.

    Even though they left messages, no one from the VA ever got back to them. They went in for his appointment today, and yes, they did mix up his diagnosis and start treating him for adeno instead of squamous cell. :( 

    They're still going to start him today on a combo of Keytruda and Docetaxel. Here's hoping that has some success... 

    This treatment looks pretty promising. I asked my parents to bring it up, but they didn't. Maybe next week. http://www.ascopost.com/issues/july-10-2018/keynote-407-pembrolizumab-plus-chemotherapy-in-squamous-nsclc/

    There's only so much I can do if my parents aren't willing to be more aggressive in their questions/suggestions. :(



  9. Just an update: waiting to hear back from his doctor.

    From everything I've read, Alimta is basically never used for squamous cell, so I'm scared there was an error. :(

    On top of that, my mom went through his paperwork and all of the earlier paperwork is marked Squamous Cell, but his most recent document from his doctor for his insurance is marked as "Adenocarcinoma", so that is a little alarming.

    My mom left a message yesterday, but I don't think his doctor is usually in until Wednesday. So here's hoping we hear back early tomorrow or we'll call again.

    I'm not sure what steps we should/could take if they were wrong? Getting a second opinion or going elsewhere for treatment isn't likely, because  my dad is now retired and no longer has private insurance. I'm not sure his VA benefits would cover anything but the VA hospital.

    Thanks so much if anyone has any input,


  10. I posted a question about my dad's upcoming treatment here: https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/third-line-treatment-anyone-ever-go-back-to-immunotherapy-1a66pp/?page=last&origin=freshen#replies

    The responses have me sort of puzzled. Everyone said it was odd to see Alimta used for squamous cell NSCLC. After a night of Googling, it does appear that it is pretty rare and the Alimta website even specifically states it is not for squamous cell. I wonder why? Now I'm paranoid they somehow forgot he has squamous cell and were treating him as if he has adeno. I asked him to call and ask for clarification on why, but he said he'd wait for his next appointment on 9/19.

    Also, after researching a lot, it appears that the study linked (http://www.ascopost.com/issues/july-10-2018/keynote-407-pembrolizumab-plus-chemotherapy-in-squamous-nsclc/) appears a lot more promising for squamous cell than the Keytruda + Docetaxel they are going to start him on. 

    I suppose there's not much I can do if he's not willing to call before his appointment, but here's hoping we get some explanations on the 19th.

  11. Yes, initially he had just Keytruda. Then after about 10 months he had a scan with mixed results, then the following scan showed progression. I'm not really finding much info on Keytruda and Docetaxel online - my mom thought it was a trial? At his next appointment they'll also be taking blood and sending that off to see if he has any other mutations. So fingers crossed... here's hoping this combo shows some improvement.



  12. Another update: My dad had his 4th carbo/alimta treatment today - I think he's still scheduled for a 5th at the moment , but they're going to do another CT scan and see how things are going and maybe stop at 4 before going on maintenance. (I've read often that there's not much benefit after 4 for his situation? But I'm not sure.) Blood work was still okay but he is a bit anemic.

    He has been having a lot of pain in his left shoulder, but it's not an area where he previously had a bone met or anything, so they are thinking it might be a torn rotator cuff problem. I've read this can often happen on chemo. I wonder why? I guess we'll know more when he has his next CT scan!

    Anyone else stop at 4 instead of 6? Anyone know about rotator cuff issues and chemo?



  13. Hi everyone!

    Just giving an update. My dad got his results last Wednesday and they were pretty good. His primary tumor was 1.2cm smaller and some lymph nodes shrunk as well. Everything else remained stable. But no progress is good news, so it's hard to ask for much more than that. Not sure if he'll have a scan before the 5th treatment or just after the 6th. We'll see. Other than some extreme fatigue and the usual pain from bone mets, he appears to be doing pretty well. He runs a few errands each day and mows the lawn far more than anyone ever should. :)

    My mom felt a little down that their doctor reminded them that they need to stay realistic and that they are just prolonging life. I get that it was a bummer, but my mom is English as a second language so I'm hoping she just took it the wrong way. And it is important to keep in mind that they will never cure his cancer, but that doesn't mean he can't hang in there for many more years on some treatments. We're all staying very hopeful.


  14. Hi everyone. 

    Just an update. My dad finished two rounds of chemo and will be going in for a CT scan tomorrow (7/23) and getting the results at his next infusion (7/25). Things seem to be going okay, but I think he has overexerted himself. He went camping 7/15-7/20. It was very hot/humid and I think he just did too much. Lots of sitting outside, probably too much conversation without any naps or rest, moving around and starting campfires/running the grill 2x a day, etc. Then the day after he got back (after all that loading up and driving the 5th wheel and truck home, which is tiring itself!) he decided to go buy a new lawn mower and mess around with that. Today he has spent most of the day in bed and has hardly left it, though his appetite seems good. Hopefully he's just getting some much needed rest.

    It's hard to get him to take it easy and accept more help from everyone around him.

    He is no longer feeling nauseated at all, just a lot of fatigue. His shoulder, where a bone met is, is still bothering him. Otherwise no new pain.  Here's hoping something shrunk or that things have remained stable!


  15. Hi everyone. Just figured I'd update the thread.

    So far my dad has completed two rounds of chemotherapy. He just did his 2nd round on July 5th. I'm in town, so I got to go along and meet his doctors and nurses, which was nice.

    So far, he seems to be tolerating it very well. Occasional nausea and fatigue, but that is to be expected. Honestly, probably some of his nausea/fatigue probably comes from the fact that he is doing too much around the house. Running errands, mowing the lawn, etc. 

    Only 4 more to go before we're on maintenance! Here's hoping his symptoms continue to be manageable!

  16. Thanks so much for the response, Steff and Tom. Always nice to hear from people that have been through it and have some insight!

    Here's hoping the side effects will be minimal! I'll make sure my mom tracks the symptoms, that way they can know what to expect after the second infusion. A friend of mine has a father that is now on maintenance infusions of Alimta and he says it is so much easier than the initial 6 doses - so we've just gotta get through that! He is going on his 10th month of maintenance and is still exercising and working - so I'm hoping my dad will have a similar experience on maintenance treatments.

    Since cancer is always changing, do you think they will eventually do another biopsy to check if his mutations have changed? I'm not sure how common that is.

    Thanks so much,


  17. Hi everyone.

    Another update. Keytruda stopped being effective for my dad. After the last mixed results scan we were uneasy, but today's scans showed some progression in all tumors.

    In two weeks he'll start on a combo of Alimta and Carboplatin. Anyone have any insight about this combo or things I should be reading? They have 6 rounds planned for him and then some maintenance rounds every 3 weeks after. They'll take it treatment by treatment and see how he's responding.

    This was a shock because he had been feeling the best he has felt since his diagnosis after radiation. We're a little nervous about chemo since immunotherapy was pretty mild. 

    Thanks so much for any input!


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