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where we are now..long and overdue


Moonbeam

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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

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Hi Moonbeam,

Geeat to hear from you!  You are really in the thick of things, I’m so inspired by your strength and hubby’s resolve. He’s a fighter. I’m so sorry to learn that this hasn’t gone more smoothly and as you said, hubby has the best medical team in the country in his corner.  
I hope you are finding some time to take care of yourself.  Sending much love and support.  We will always be here for you!  Keep us posted as you can.  We’re all praying!!

Michelle

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Moonbeam,

Advice on pain? I understand what he is going through and live with chronic pain. I think the L-5 ablation procedure should go a long way in eliminating the pain source and I hope he can have the procedure on Jan 8th if not sooner. Have you asked about a nerve block that might give temporary relief before the ablation.  This is a long shot because I'm not sure nerve blocks are given for spinal pain but perhaps they can be administered. 

I agree with Michelle -- take care of yourself so you'll be a better caregiver.

Stay the course.

Tom

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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

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Hi Moonbeam-

I wish your family didn’t have to go through any of this, January 8th must feel like it’s just so far away.  I have an idea which might be ridiculous and if it is- then forget it... Joy produces endorphins which is almost impossible to experience when pain levels are that high but is there something your hubby truly loves (that doesn’t require any energy on his part)? Like music or a favorite movie?  Here are some examples of people I knew who experienced horrific pain: 
  I had a colleague with a traumatic brain injury following a near fatal car accident-ironically what pulled him through was Iron Maiden play lists.   A few years ago My sister and I pulled the same stunt when Dad was in the ICU, we got a hold of his play list and the nursing staff just had to deal with hearing “Native New Yorker” disco version really loud over and over.    Daddy loves that song (???) Dad also loved pizza so we brought it into the ICU to let the smell waft around.  Even though he couldn’t eat at the time, It kept him calm.  Our New Jersey version of aromatherapy.  To this day Dad has no memory of the ICU.  I don’t think the morphine worked all that well but knowing he was surrounded by things he loved, music, food and mischievous daughters pulled him through. 
 

Do you think a sound machine at night with soothing white noise might improve the quality of your husband’s sleep?  

The reason I bring this up is since my cancer diagnosis I learned there is some science that sound can help pain management, Georgetown University conducted research under the direction of Candace Pert PhD back in the 80s.  She produced a CD which can be found on Amazon guided visualization to reduce anxiety. I thought it was a bunch of hooey until my second Integrative Oncologist said she used this CD during her residency where she saw things medical science couldn’t explain.   
 

I know MD Anderson has a world class Integrative Medicine Program, has a pain management/ anxiety consult been ordered?   Is that worth a shot??   Just some ideas......  hang in there my friend.  

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  • 3 weeks later...

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

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Moonbeam,

I wish there are words to express how difficult this is for you.  I’m so sorry about the loss of your Dad, saying that’s a lot to deal with in a complete understatement.  
It’s a kick in the gut to hear the trial was not successful, “on paper” the science appeared to be “sound”.   I really admire your strength and hubby’s bravery for going through the trial, maybe they will learn something from it to help the next person.  Disappointing doesn’t even begin to cut it.   
The doctors are still willing to stay in the ring with you I hope this next round of treatment brings some relief.   
You have the love and support of the entire Lungevity family behind you.  Hugs and prayers coming your way. 
M.  

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Moonbeam,

Oh my! What can I say? Well I can't say I know how you are feeling because in truth, I know how your husband is feeling. My wife would say my stubborn level is quite high--actually she'd say it is through the roof!

What troubles me most is the inability to relieve pain. I know many with spinal mets who've had precision radiation and or ablation and a no pain result, almost immediately.  And, taking long term pain meds is no picnic. Then add the anxiety and I understand the nightmare because I've lived it. But, your stress from helplessness has got to be off the charts. Try and arrange for someone close to be with your husband so you can take a break.  A short coffee or lunch out with friends may do the trick.  You'll need to be fresh to bolster your husband through the next round of treatment. I wish I had answers. I really wish I had a sure-fire cure! 

Stay the course.

Tom

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I'm so sorry for what you've been going through--the loss of your father in the middle of your husband's issues. Is  your husband seeing a palliative care doc? If not, I suggest consulting with one. In case you're not familiar with palliative care, it's NOT the same as hospice. Palliative care seeks to alleviate the effects of an illness and/or the side effects of treatment and to help the patient improve their quality of life. A person can have palliative  care while they are receiving treatment for the disease.  

I second Tom's suggestion that you arrange care for your husband so you can take a short break now and again.

 

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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

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Moonbeam,

Firstly, I am sending all of my warm thoughts and hugs your way.  You are in this for the long haul, my fellow caregiver, and your husband is so lucky to have you.  

Second, I think your question about the anxiety and pain meds is a reasonable one.  As you know, anxiety can do so many wacky things to us and then to add narcotics to the mix just quadruples the wackiness.  I don't have a reasonable solution for you, I am sorry.  This is probably a dumb question, but is he taking something for the anxiety? Is he taking something to help him sleep?  Exhaustion adds to anxiety and can make us less tolerating of pain.  

I am grateful you have a best friend you can count on and is there for you...I hope she was/is able to help you cope with all the changes happening in your life all at once.  I also hope through all of this that you have some quiet, quality time with your husband periodically, even if it's just for 5 minutes.  As a spouse who is caregiving, those times are very important to keep your head in the game.

Take Care,

Steff

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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...

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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

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Hi Moonbeam

I’m detecting a glimmer of hope in your post, your determination is in-fatiguable.  Hubby is getting the best care possible, the spinal procedure sounds like it has a high probability of working!  
I’m wondering it the team has discussed EMDR to address the anxiety?  That’s  technique can be effective to rewire the brain when anxiety meds aren’t working.  

Happy Birthday to hubby!  Let your husband know we are all rooting for him.  
Sending prayers for the next steps

Michelle

 

 

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Moonbeam,

I was wondering if his doctors would try a cordotomy for his spinal pain. Years ago on another forum, a survivor told us about his cordotomy procedure. It worked. In fact, it worked several times because as you've said the relief is temporary but it is substantial relief. I really hope this works.

Stay the course.

Tom

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Moonbeam,

I've been reading all your posts but didn't really offer anything because I had a relatively simple surgical procedure without any of the difficulties that you are going through.  I just wanted to recognize the determination of you and your husband in looking for resolutions to these complications and let you know that your both in my prayers.

Lou

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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

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So sorry for your loss. In many ways I am more concerned for my wife than I am for me if the worst is my fate.

Loss is hard. Lean on your family and friends.  And live your life going forward.

God bless and be at Peace.

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Moonbeam,

There are no words to tell you how sorry I am for your loss. I read your posts and you were an exceptional, intelligent and loving caregiver from the very start and you were empowered to search out the very best care possible. You are a loving tribute to your husband. My thoughts and prayers are with you during these difficult days.

Take care of yourself, DFK

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Moonbeam,

I just opened up the Forum with your husband’s passing a complete shock. I can not express how sad I am for your loss.  From your first post it was clear you are a champion care giver. Your love is so inspiring given what you’ve had to deal with these last few months.  You never blinked when it came to advocating the very best for your husband.  
Our love and prayers to you.  I’m so honored to have “met”  you.   I will pray for blessings and peace.   
Michelle 

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