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Moonbeam

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Posts posted by Moonbeam


  1. Want to hear how everyone is doing? Praying everyone is well and managing with lots of strength and determination. There isn’t a day that goes by where I don’t miss my husband. His service is this weekend. A month exactly from when he passed. 😩
    I want to make sure that everyone hears me when I say “you got this” and don’t think that my husband’s story is an outcome for anyone who is fighting this battle. Yes, it happens but LC didn’t get him. He passed from complications Ie. Aspiration Pneumonia. I’m still shocked and completely heartbroken but I truly believe the advances with this disease are incredible. Keep fighting. Keep being positive. Keep the strength and know “you got this!” Sending so much love

    XX


  2. I never thought I would be writing this post to you all...my husband passed away on his birthday, Jan 24. To say I’m devastated and shocked is an understatement. My heart breaks. Even more “surreal” is he passed the exact same time he was born!!! 🤦🏼‍♀️ Not sure what that means but we all (me, our children and his mom and sister are speechless) 

    Through tears and reflection,  I’ve learned more about this man I loved completely - a simple (is it that simple)blood test showed (arterial blood gas) that his pain and the anxiety he dealt with, was due partly to the lack of oxygen and CO2 that was or is responsible for his lung to function. Him to function. On Thursday evening when I brought him to the ER, he had, after several tests and scans,  they said he had aspirated and had pneumonia. I won’t go into details but I’m beyond devastated and I miss him so much. Wasn’t the deal we had. :( 

    I am forever grateful for this group and want to continue to be a force in everyone’s battle with lung cancer. I’m envious of those that continue to battle this insidious disease and I will always be your number one cheerleader. I’m soooo proud of my husband and the strength and courage he showed all the way to the end! 
     

    I love him sooooo and will miss him and us every single day! 
    xx

    Moonbeam


  3. Update: change of meds. His main dctr “oncologist “ quarterback as I say, was great today. His “lung” cancer isn’t the issue. It’s the damn tumor, obvi, in L5. The pain and anxiety is killing him. Sent us up to supportive care/palliative and changed meds. “When one is on for so long, they lose there efficacy and you get (I’m drawing a mind blank) but one has a reaction to them. Which is my husbands case. All of that being said, they want him to do a cordotomy for his pain. It’s preformed on the spinal cord with a needle and guided by CT scans. It’s essentially morphine in the spine that’s temporary relief but at least gets him to a good place. There has only been one person that it didn’t work for, but I will not even go in that direction. Regardless, they all on his team see his anxiety is a problem and the pain regimen has been switched again. Cross fingers.

    as to new treatment, next week we move forward if all is stable with him. His blood work is great. Go figure. His O2 is great. It’s this damn pain and anxiety. 

    Tomorrow is a new day and I hope he finds some relief. It’s pouring rain and cold. Tomorrow, the sun is supposed to shine. His bday is Friday and I’m blessed he’s making it to 52 :)

     

    xx 

    Moonbeam


  4. He is on anxiety/ sleeping meds. He takes Seroquel XR even though it's for depression etc - his doctors felt this was the best for sleep and anxiety. He also is on Cymbalta. I believe it's not doing anything except making it worse. He's on fentanyl patches and dilaudid as a breakthrough. DOES NOT WORK> that is my feeling. We have been in and out of supportive care for months on end and Im eager to get to his appt at noon today...


  5. Good morning everyone and thank you for responding. I will try to answer everyone and also, a few questions, Tom or anyone.

    My husband is on palliative care. Has been for a long time. Unfortunately, “the horse” dose of pain meds (changed frequently) to help alleviate pain is eh. I truly believe his anxiety is so bad, that the pain and symptoms he has are made worse. 
    Ablation: makes no sense how it didn’t work. We meet with his main dctr this morning, and will discuss this. He had radiation to the area in July and unfortunately, bc treatment didn’t work, the tumor grew. When he had the ablation two weeks ago, the dctr was pleased that they got it and went beyond the margin?! Throwing this out and please understand I’m just figuring out what’s going on: is he hooked on the pills and anxiety so bad, that he isn’t realizing it worked? Is that a dumb question or thought? I’m not saying he isn’t in pain, but it just doesn’t make sense.

    As for a break - I take them frequently but as soon as I’m back, his “need” for me is great. He’s afraid. Trying to get a therapist here more frequent as I fear his anxiety is killing him tbh. Suffered years ago from it so I know the signs. 
    Have had family here off and on but unfortunately, it’s added more stress etc. For some reason, they fail to keep their own feelings/emotions and shi_ at home. So dctrs orders, no visitors for a while. (Another long story about “his” family) Mine is only my sister now and she’s come and just recently, in order to get his mom out, I called my best friend and told her I needed her. And boom, she flew here. :) it was wonderful. 

    today we have an appt so I’ll keep you updated 

    xx


  6. ugh...where are we now...treatmenet..immunocore did NOT work. :( I don't even know where to begin in this update...he's been in and out of the hospital. mostly for pain. The trial didn't work. Even though they would say T-Cell therapy or Car-T can work even after cut off date. Who knows. All I know is he is off the trial. When we found out, he was admitted for pain for the same thing...tumor in L5! He was in for 2 weeks and got out January 14th. Was in since Dec. 31st. Came out 15 lbs lighter 😭. His anxiety is thru the roof. Had a procedure for the tumor on his spine..ablation using heat and cold. They said they blasted it and beyond the margins but not feeling like it has worked tbh. Pain still there and he lost more movement in his right leg.  He is a glimmer of who he was. It's sad, frustrating, and every single feeling you can imagine. He is riddled with many anxieties...swallowing, when his next pain meds are, bed isn't firm enough, it's too cold. afraid to close his eyes at night, something is stuck in his throat...just to name a few. It is very difficult to watch, hear and understand sometimes, but Im still bound and determined to get him in a positive mental state. He's stubborn - always has been. Love that about him but not right now. ;) I try like mad to help him with breathing to ease his hyperventilating - makes his anxiety worse. He's so beyond tired as he refuses to sleep in our bed. He talks gibberish sometimes and his weight loss is shocking since we've gotten her in Houston. 31lbs!!!! he was a healthy 6'1" man overweight from the beginning of this...255 and now 181!!! My heart breaks and he's to begin a new treatment soon...(I'll let you know on that) but in the meantime, I do not know what more to do with someone stubborn with anxiety who is on meds to help it. PLEASE know when I say stubborn, I say in a loving way. I simply cannot imagine what it is like to be him or live with cancer....I only know what I see and hear and I wish I could change this for him and have him be someone who "lives with" cancer but I know he doesn't have longevity ahead of him. If and when this new treatment starts, if it works - great IF not 5-7 months left. I just wonder if he has that now??? Or is it the anxiety? just don't know what to think....

    so there is my rant and fill in tonight...between family and one friend, have no time. And my father passed away two weeks ago, so things have been a bit of the continual "shi_ show" as I like to say. 

    I hope everyone is well and I do not want to have anyone who is new to this sight worry for their loved one. everyone's lung cancer is different. My husbands is aggressive yet, I do believe if things were done early on, maybe we wouldn't be where we are today. That's a whole other story! 

    XX

    Moonbeam


  7. Hi Michelle and Tom...It most certainly has been a whirlwind and as we speak, we have the place to ourselves. he is next to me sleeping. ;) Tom, you are correct in eliminating a lot of the pain by doing this procedure. It's not easy right now given we just had Christmas..Hanukah now, until I believe, the end of the month and then New Year's. His leg is giving out because of this tumor. Two weeks ago, it got considerably weaker and now using patches on his calf. They say this is normal given the location and it extending into the para spinal and epidural area. His doctor was so disappointed it was cancelled and was wanting It sooner however, scheduling and the doctor being booked has made it hard. I just don't know if he can wait that long. 🤦‍♀️

    As for me...I'm trying to take care of me. Hasn't been easy especially with someone coming every week since we got here. Our children are one thing and I sooo understand his family wanting to support us but it's been a lot. My worry is him. Thanksgiving was hard for our kids and I know they worry that this was the last Xmas with their father. I worry also. He is a glimmer of who he was. The pain meds have him out of it. He's lost a lot of weight since diagnosis. Our lives have changed and the worst part, is watching the pain he is in. I find it so inhumane and heartbreaking. He gives me my strength. TO live with pain at an 8 (1-10 scale) for 6 months is unreal... and he's lucky to have it at a 6 some days. He''s on a "horses" dose of pain meds and it's just sad. Ive known our new norm, but I truly feel if the spine were dealt with, things would be so bad. How can one fight when they are in chronic, level 8 pain with no real sleep?

    I cannot imagine life with out him but I'm watching cancer tear him apart. 

    XX


  8. Good morning, all. wow...it's been a while. We relocated to Houston November 24th. have had family here every week. Hope everyone had a wonderful holiday. My husband is still struggling with pain from the tumor in L5. It extends into the para-spinal and epidural space. He's been admitted to the hospital twice - both times for a week to get this pain under control. He started the Immunicore trial on the 26th of November - weekly. Tolerating it well. It's the IMC-C103C trial. It focuses on targeting tumors that express the protein called MAGE-A4. It's the first in-human trial and so far, all has been good. Biggest issue has been his spine and the lack of sleep!!! He doesn't sleep at night. He's afraid and he wakes bc of the pain. He has a hard time eating as he has no appetite. He's on a "horse" dose of pain meds and take an anti-anxiety med as well. He has been spitting up a bit of blood in his mucus and the doctors etc are all aware. He was doing really well until the last two weeks and feel primarily it's because he gets no sleep!!! 

    He was supposed to get an ablation procedure for the tumor in L5 last week but his blood pressure went down and heart racing when he was put under. All was normal with his heart (EKG was normal and echocardiogram was as well) Anxiety, lack of sleep, maybe dehydration...not 100% sure but all doctors and stem cell group and cardiologists saw no problem with him doing the procedure on January 8th. The problem is, he simply cannot wait that long. If the pain was gone or under control, I know my husband would be able to fight this battle even better. 

    I'm so glad we are here and I feel good about his care, I'm just so sad he can't sleep and ease the anxiety he has. I am convinced he has many anxiety attacks and how could he not?! The pain has been going on for 6 months. :( 

    Advice? thoughts? 

    I hope everyone is well. I'm going to try to catch up and see how everyone is doing. Sending so much love to all!

    XX


  9. So...update...we leave today for Houston for a few days. We spoke with my husband's oncologist (here) and he said "I would absolutely go for this trial. If your tumor qualifies you for it, even though it's experimental, it offers my husband a better chance for a good response. He has seen good responses to a similar trial and he wishes him the best." He's on board and will continue being involved with his care. :) So off we go for a few days and I will report back soon.

    Thank you all so for being there for me. So blessed to have you all

     

    XX


  10. So, here I go in trying to explain what I’m coming to understand or at least try to. It’s not easy. I loathe trying to write it when I haven’t learned enough about what he’s about to begin...my husband has done chemo twice now. And this last time with Keytruda. Standard of care treatment. Thank goodness he will always have it. Every Person hopefully with cancer will have it. However, he’s a “match” for this study. Whether it’s new, no statistics of its efficacy or failure, who knows, but we’ve tried the standard care and it’s not working. 😩 we can keep going right, with standard care OR we can go left and at least try it. What does he, what do we have to lose?

    Here’s what I know...he won’t die from trying this. It’s one month. His new chemo cycle (with one drug he has had) wouldn take 3 mos and then he will be re- scanned and we know with that one (taxotere) it came back 2.5 mos later or in the second round with keytruda, it just didn’t work.
     

    So, this trial or study is one month, new,  totally different treatment And he’s Has a match... why not try???  
    This study is a variant of CAR T except this is more natural? My husband gave his blood and he’s a match. If I understand correctly, the immunocore study is taking T cells targeted against the tumor and his T cells are already matched for his HLA type. They can give it to him directly because they’ve already done the matching and they don’t have to be engineered. (Hope I’m getting this right) If it works, doesn’t always, but if it does, it does by stimulating his own immune cells and divide and set up shop and hopefully work to arrest the growth, maybe have it make some disappear or who knows. All we know is we have nothing to lose at this point and maybe something to gain!!?! 
     We are going over Tuesday for a meeting on Wednesday to ask about many questions that you mentioned Michelle and Tom. I know he has to be admitted for 3 weeks to be watched and closely monitored. The other questions: our cost (me living there for a month ) termination criteria, and my husband had a few but left my 3” binder and bag at hospital here in Tampa tonight ;) 

    so ask away... and again very similar to CAR-T but not with the side effects since his is directly given as they’ve done the matching and his T cells matched his HLA type???? 
    may not be getting all of the lingo correct but I’m trying to understand it all. Soooo not easy .

     

    xx


  11. Hi. Update. Call is moved to 4pm EST in the meantime, the NCT number is:0397333 and the study ID number is IMC-C103c

    Looks to be new and it’s sponsor is Immunicor. I wish I knew so much more about all of these trials etc. Doesn’t seem like I’ll be able to find the success rate? He would be hospitalized for 3/4 weeks the nurse did tell me that. 🤦🏼‍♀️
     

    tic-toc

    any questions I should be asking for those of you that are so versed in trials/studies?


  12. Good Morning, Tom. Yes I believe that is what it is. It’s ringing a bell ;). Unfortunately, when we received the call last month, we were in the car. I was driving and the info was hard for me to “get” as I was driving and my husband was a bit out of it. He does not have the the presence of PD-L1, that I am certain of. I’m eager to hear what the dctr has to say and as soon as I know more, I’ll be able to give more details. I know the nurse said on the call while driving, that his oncologist at MD was happy to see he had this protein as many do not and he was eligible to start if and when the cycle of abraxane/ carb/keytruda stopped working. Well, it clearly didn’t work. :( 


  13. So, had to digest my husband’s results on Tuesday from his CT/TAP of thorax. Abdomen and pelvis. Well, carbo/abraxane/keytruda didn’t work. I prepared myself however, had a few surprises we weren’t expecting. Quite honestly, as we come up on a year of this battle,  not sure it’s really registering, as I’m in “the mode” again. Took me a day to gather it all, cry/scream and comfort, and now I’m ready to move. Which way...I’m not sure. As you all know, he had a left pneumonectomy dec 2018. Started chemo at end of January 2019. (Cisplatin/taxotere 4 rounds 3 weeks apart) after the 2nd cycle, Cisplatin discontinued due to tinnitus (should have lowered dose but not touching That) and the last two cycles had taxotere alone. End of April scan showed NED. Another bump, unrelated and in July cancer came back. Spine L5 dokey include. Had radiation and kyphoplasty. Then in started the protocol above. 
    here we are today. Didn’t work. He’s been admitted to get pain (yet again from tumor in L5 / hits nerve) under control and now they are recommending docetaxel (taxotere) and cyramza, which would start next Friday. However, we learned from our second opinion at MD, that he has a T Cell protein match????  this is where I’m CLUELESS as he has no other marker at all!!! We, as you can see, my husbands cancer is very aggressive. Squamous/poorly differentiated and I may add, his tumor in the left lung and the one in spine L5 always extends! Wtf! Why can’t it be just round and no extension? 🤦🏼‍♀️

    regardless, this trial could be the miracle that kills and shrinks the tumors bc he expresses the protein marker. However, it may not.
    However, taxotere worked for him before. Will it work again with cyramza??? What was seen in his scan prior to keytruda grew AND it’s now in the right hilum and medial right lower lobe. 😩 

    do we do plan b (taxotere/cyramza) first and then The T cell infusion/ trial or Vice versa? Taxotere worked before why wouldn’t it work again?’! I have a call at 9/9:30 tomorrow morning to ask questions, and as you can see I don’t know much about this T cell protein he has...all I know is they want him at MD as he’s eligible and they want to get started. 
    so now I’m in the middle trying to figure out which way we should go?!? 🙏🏻 
     

    Alright my voices of reason and guidance and trying to figure out what I’m writing in regards to his T Cell protein??? Need help with some guidance. 

    Xx

     

     

     


  14. Thank you, Tom. From one person who has had a pneumonectomy to another (my husband) it’s comforting to know. Great suggestion on letting his surgeon know as well, since we will be there Monday. I’m writing both your and Michelle’s places down. Never can have too much information. 
    thank you so very much for chiming in! So happy you are doing so well. I am hoping we will have that day again! 🙏🏻


  15. Hi Michelle - thank you for your quick response. Keytruda is hard and maybe that’s what’s going on. I have a feeling we will be going back to MD (they’re waiting for the results as well) from Tampa 😉. I’m ready, trust me. We head over to Tampa Monday for his scan.

    I like his new oncologist a lot and he has followed this protocol, as it was supposed to be given. His first oncologist , as you know, we had too many issues with and when he started on this protocol, he didn’t follow it. Gave him it once and wanted to just do the 3 drugs every 3 weeks without abraxane given week 2 or 3! So when he first started, there was a lapse . Go figure. 
    I try to move past that, but it’s difficult. 

    So hard to have faith and hope sometimes when it’s out of our control 😩

    thank you for all the love and support as always!!! So thrilled for you and the news you just received!!! 💃 
    xx my friend


  16. Good morning all...the last month or so has been marked with may ups and downs for my husband. The up is we celebrated our 25th Anniversary :) the downs are he was admitted a few times to deal with the nerve pain in L5 lumbar spine. He received treatment  at the end of july for the tumor in L5. He got 5 rounds of radiation and then kyphoplasty to support the bone. Everything is stable, so that is the good news and nothing else anywhere in the spine. Unfortunately, the "stable" tumor extends into the epidural and para-spinal space which is why he has pain and trouble walking etc. When he steps, it hits the nerve. He, after going off all pain meds etc, is back on Dilaudid and gabapentin and xanax for his anxiety.

    ALSO...He also just completed 4 cycles of his chemo/immunotherapy treatment protocol ( the protocol for carbo, abraxane and keytruda) Abraxane was given weekly and carbo/pembro every 3 weeks.  On Monday, he has his CT T/A of Thorax/abdomen to see if it is working and shrinking the tumors/masses in lymph nodes and chest. (some of those lesions are abutting the esophagus). I am not feeling positive and nor is he to be honest. He has developed a bad cough. It has been going on for a few weeks and i took him to the pulmonologist on Wednesday (much to his dismay). He's on doxycycline and nebulizer treatments. He does have a bit of trouble breathing and he does have phlegm (clear to yellow/brown) but it's hard to get out and is very deep. He always feels like something is "stuck" in there.  I'm trying to prepare myself for the news of it not working tbh. Seems like it's best given the fact that every time we have gone for results in the past, it's been bad. We are scared to say the least and extremely anxious about the results on Tuesday. I go through...'maybe the cough is from the chemo/immunotherapy? Maybe it's common?' but I know from initial diagnosis, it's probably not the case. 😢 I am not a pessimist at all...just preparing myself and being realistic given what I see right now. 

    What happens if it's not working? Do they try new drugs? or do we go to Texas where they found he has a marker (T-cell protein?) for targeted therapy? Is he a candidate for some type of radiation since he hasn't had to his chest? (side note: had left lung removed)

    Be honest...his cough isn't a good sign? I know you all aren't doctors, but many have been in this spot. What should I be asking of his doctors? How can I/we arrest this beast within? jeez, the million dollar question. Advice? Scanxiety is in overdrive ;) 

    I'm sure my thoughts and writing are all over the place and I can certainly fill in all the missing information if questions are asked.  Thank you and much love

    XX


  17. Lisa A - my husband received 5 treatments to L5 in his spine plus had kyphoplasty at the end of July and first few days of august. All was going well and he stopped all pain meds first week of September. UNTIL this past Monday. The pain in the same spot is back...and goes into his hip. The radiation helped and all is stable. There are no new metastatic lesions and everything is stable. Except the pain. They have done 2 MRI's of the spine in the last 2.5 weeks and no reason for this amount of pain...He was admitted on Tuesday am and he is now taking gabapentin, dilaudid, and xanax. They think his anxiety may have something to do with all the pain. 🤦‍♀️ I know the burn from the radiation cropped up on Sept. 12th and I feel since then, little by little, uncomfortableness developed but by last week and weekend, he was back on the floor. Never did I think we would be here again. All of his doctors know about this and seems the only answer is pain meds (he's so bummed about that) and xanax for anxiety. Who doesn't have anxiety and especially a cancer patient! Maybe there are others who know or can shed light on this.

    XX

    Moonbeam

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