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Hi all. So my husband is schedule for a PET scan and a bronchoscopy (EBUS) procedure on he 18th. Tic toc. 😩 I’m certain given the size of the two lymph nodes, we are dealing with metastasis. I wouldn’t call this a recurrence as much as a progression in such a short period of time. < 3 mos. after finishing chemo and having NED in April. I believe we are dealing with a very aggressive cancer. Duh?! I’ve been reviewing all his CT scans and some things really stand out: before chemo, his subcarinal lymph nodes increased slightly in size. The report said “most likely reactive from pneumonectomy “ (he had it Dec. 10th, 2018)

Then, after chemo in his April scan, his report said “subcarinal decreased “ however, that’s when they found the pseudoaneurysm of the descending aorta. Which is why he had the endovascular repair. But, when they went in through groin and looked around, they realized it was not in the aorta but in his intercostal. So they did coil embolization. Much safer and effective. 

Move to the CT angio of chest last week to make sure endovascular repair looked good: 

findings:

-pulmonary outflow tract is mildly dilated up to 4.2 cm. WHY? What does this mean? Hypertension? 

- there is a 2.9 x 2.5x 2.8cm enlarged lymph node in the left para-aortic region of the mediastinum AND 🤦🏼‍♀️

- and enlarged 3.7 x 1.9 x 3.3 cm subcarinal lymph node 🤦🏼‍♀️

Was the subcarinal always a bit enlarged but not pathologically? And it wasn’t “reactive” so to speak?

And is the para-aortic lymph node in any way in relation to his pseudo-aneurysm? Bc the aneurysm touched the aorta coming out from the intercostal?  

I’ve researched and am gathering as much as I can. But given what I’m seeing, without PET scan and bronchoscopy, I believe I know what’s ahead in this “second inning”. Am I wrong? And if I’m correct, I want to have the tools and questions ready and to make sure every test is done with these biopsies from the bronch on July 18th. 

Also, he has what appears to be sciatica. Been extremely painful and has been unable to really have much exercise in the last 3 weeks. Sleeping has been terrible. Anything to do with above findings? Pats-aortic lymph?

So thoughts. What I need to have them do etc. have a few key points : molecular and immunologic features of samples. Any tumor genetic changes? I’m worried radiation will hurt his healthy right lung (pneumonectomy of left)

... been gathering as much as I can ..at the same time, having him walk to build up strength. Breathing in his spirometer. Sciatica stretching exercises... have to have him ready for procedure ;) and yes, I am resting (a bit) Our son (23) came home for a few days so that’s been great. And our daughter (21) lives here with us :). 

Lastly, my husband does have a different cough that started 2 weeks ago. No wheezing but feels like a “tickle in the middle’. 

Boy,  I hate this for him, for all of you, for me and all of us who are in this. I’m sad, angry and determined to “f-ck ” this cancer up! I’m determined to have him be ok!!! Can’t imagine it any other way.

xx

 

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Moonbeam,

I can’t address all of your questions. 

First, your determination is right on. 

And far as radiation goes, my right lung was removed after 6 infusions of Taxol and Carboplatin and 30 conventional radiation treatments. My recurrence of theee tumors in my right lung (not sure if recurrence or progression) was handled using precision radiation. That radiation didn’t hurt my remaining lung a bit except to fry the tumors. 

I also have strange wheezes and have tracked the cause to high pollen and pollutants. Maybe that is what is causing his symptoms. 

You are right to have the next biopsy test for all possible markers and indicators. Keep your determination high. 

Stay the course. 

Tom

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It was a lot tonight, Tom. Glad to hear about radiation and not hurting your left lung. And thank you for agreeing with doing the biopsies on the lymph’s. This has always been difficult for me to say because I don’t know the right way to say it...now I know “please test for all possible markers and indicators ...” ;) 

as for his cough, there’s always one there. The last two weeks have been different. More constant and harder to “cough whatever is in there”. His words. Believe it or not, our son wondered and asked me if he was ok? He’s like me in that he needs facts and what’s to know what’s going on. No surprises.  Our daughter and my husband are alike...tell me what I need to do, and I will do it. (With of course some push back 🤪)

Btw - re-read and printed out your article again “Uncertain treatment outcomes:  A Baseball Model” lung cancer is unpredictable but “we” me and my husband /our family are going to put the ball back in play and arrest his disease.  We are staying the course, Tom! 

Xx 

pS how are you??? Your wife? Family.

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Moonbeam,

I sometimes use Mucinex when I have an abnormal wheeze that is difficult to break up. It is an “over-the-counter” med and should be available at a pharmacy. I dose 600mg morning and evening. 

Sometimes after a pneumonectomy, the trachea swells and holds mucous and it is difficult to expel. Mucinex helps me. I’d also encourage him to take a “steam shower”. Crank on the hot water and have him stand out of the water stream to breathe in the steam. We do this when I get all clogged up. 

Stay the course. 

Tom

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Tom

I also have been using Mucinex and have had this abnormal wheeze for the last week or so that was so difficult to break up no fun. On Friday  i tried this 2tbs of Apple cider Vinegar in one large glass of water twice a day. And it works.  lol

When you drink organic, cold-pressed apple cider vinegar, it contains a substance called “must.” ... The acid in apple cider vinegar thins out mucous in the throat. This helps the mucous to move out of your respiratory system more quickly. Loosening phlegm can help you feel like you're on the way to recovery.

 

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Hi Moonbeam

I wished we still lived in Florida so that I could give you a big hug.  I understand the 18th seems like it’s a long way off, particularly when hubby isn’t feeling well.  That cough.  Horrible when there’s not much you can do.  

As Kleo has pointed out, Bob IS Yoda so the vinegar seems like a viable option to me.  I use some Essential Oils ( for example Breathe by Young Living). Peppermint EO when placed on the hands and cupped over the nose with a few deep breaths is also a congestion buster.  

Shortly after my diagnosis I adopted a mantra- diagnosis is not prognosis, Stage is just a number. Keep that fire in your belly burning! 

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aw Rower Michelle...thank you. and thank you all for advice...this waiting for his PET scan and his EBUS/bronchoscopy is not fun (July 18th). Feels a bit like Nov. 2018. Had his CT and they saw the nodule in the main bronchus in left lung and tic toc...wait wait wait for confirmation. We knew it was cancer and I believe now, the cancer has spread. :( The only good thing about waiting is he's getting physical therapy for his back. Hardest part is watching his struggle and be in pain. :( It is also allowing me time to research and get all our ducks in a row to face what's ahead. 

The pit in my stomach is the hardest for me. Hate the feeling inside and i try so hard to just breath. It's in these times, I wish I could let go of the worry as it certainly doesn't do any good. I'm afraid and a lot of feelings come to the surface so just trying to deal. Sending love and many thank you 's for the support! XX

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Moonbeam,

I'm sorry to hear of your stress, we understand how you are feeling.  I wish I could "translate" your husband's scan results for you, but I unfortunately still do not speak this foreign language very well.  Having early access to scan results can be a double-edged sword...On one side we stress out if the findings don't say good things or say things that we can't understand, and the other side gives us the opportunity to prepare to meet with docs about the findings.  Take the 2nd side of the sword and use it to your benefit - have all of your questions ready for the doc and be prepared to take notes - this is what I do.  And don't be afraid to follow-up afterward if you have additional questions - I prefer email so I have their responses in writing to refer to.  

Finally, I echo Tom's suggestion of Mucinex.  My mom takes it daily and has since her lobectomy 4 years ago.  There are days she needs to increase the dose because she has more phlegm.  The phlegm comes and goes and some days she wheezes all day.  My mom has a specific regimen she follows, you can ask your husband's docs what they suggest and go from there.  When she gets really bad (usually 1-2 times per year) she uses her nebulizer with saline and it helps break up the phlegm.

Take Care, 

Steff

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My Pulmonologist wrote me a prescription for Vertussin AC and Benzonatate (a/k/a pearls) and they help tremendously for that tickle cough.  The oncologist also suggested over the counter Delsym.  My husband has learned to how stack these so that there is no Overdose and it has been a Godsend!  (we keep Delsym at 12 hours).  On a brighter side though, my cough is now very light since my last treatment and I am now able to sleep through the night.  Just a thought for you to discuss with your doctors.

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