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Long post with unknowns and much anxiety


Moonbeam

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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

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Hi Moonbeam-

You’re more coherent than you feel right now. I can follow this update no problem and understand there is no salve to alleviate all “the stuff”: panic, fear, hopelessness that is occurring while waiting for Tuesday’s results.  

I can tell you I had a dreadful experience on Keytruda, the cough was worse than at time of diagnosis with the creeping crud not coming out  of my lungs which required opiates.  I broke a rib too from the coughing spasms. 

I think you’re being brave and practical, hoping for the best and preparing for the worst.  One of the members of my support group was treated at Moffit with the standard of care which wasn’t going well.  At MD Anderson there was a “bunch of cowboys” willing to think out of the box which arrested his disease.  He now lives in KC of all places because of our NCI (close to Houston & smaller city so we don’t get lost in the shuffle of a big health system)  

On Monday you might want to consider reaching out to the patient support team at the GO2FOUNDATION in San Francisco.  They have access to the national experts and can help facilitate an appointment.  At the very least it will give you something to do. 
 

My thoughts, prayers and love to you both

Michelle
 


 

 

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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

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Moonbeam,

I don't have active disease but had my right lung removed and during the pollen season I'm plagued by a cough that feels stuck in the center of my chest. So I understand that discomfort. My symptoms stem from scar tissue extending from the bronchus stump on to the trachea and that area is very sensitive to air quality and also lacks the cilia normally fund in the trachea to move mucus. When I feel a clog developing, I park myself in a steamy shower until it resolves.  I also use albuterol delivered by nebulizer before shower and sometimes after if I don't get the desired result. Unfortunately, the inflammation caused by irritants in the air and scar tissue combine to make my coughing problem chronic. Perhaps your husband's pneumonectomy introduced airway irritation that is causing his symptoms. On a side note, to diagnose my coughing problem required huddling up my retired thoracic surgeon with the pulmonologist that treated me during surgery and the pulmonologist I see now. They had to deduce the cause of my problem because fortunately pneumonectomies are rare events.

I think MD Anderson is a good next step. You might also consider a consultation with National Cancer Institute Intramural Cancer Treatment Program. I wrote a blog about this program and you'll find contact information here

Stay the course.

Tom

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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! 🙏🏻

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