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Long time... Checking in & miss so many voices here!


ColleenRae

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Some of you may remember me... it's been several months since I've been able to participate in this forum. I still have a lot of "thank you's" to write to those of you who responded to my last few posts - things were snowballing for me (apart from LC) and you all offered great suggestions and hope.  It's been a bit of rough few months for a variety of reasons, but things are going well despite the hiccups.  Main improvement has been my son - I really had to focus on care for him as he was really suffering / having a hard time. That has improved immensely and he is in a much better place. Some of you may recall he is on the Autism spectrum. He is graduating in June with his AA; so very proud of his accomplishment. He was planning on transferring to a 4 yr university, but COVID and online learning, has really changed his plans. I'm just looking forward to having him be done with school and hoping we can spend some quality time together - COVID or not.

I've been trying to catch up on posts here by many of you that helped me so much / that I followed when I first found this site in 2018... Can't hold this one back. LexieCat - You continue to absolutely amaze me! What a warrior you are! I loved seeing your smile and updated pic, too... Love the silver! :-)   Bridget, Tom Galli, Tom in Longview.... Just so good to see your posts and know you are still here, helping others as always...

Update: 

I've had a lot of really weird / multiple health issues crop up this past year and have had to address those issues - putting my NSCLC life on the back-burner (fortunately I could do that for a while!). I have a benign cyst right on the isthmus/center of my thyroid that is about the size of a golf ball that is unsightly and uncomfortable. Not wanting to have my thyroid removed at this time (that is the only real solution to get rid of the cyst) as I don't want to take synthetic hormones. So, waiting to see if it continues to grow and when I can no longer swallow or tolerate it I'll do something about it.

Last October I found some pea size nodules on the arches of both feet. Received a dx of a rare disease called Ledderhose Disease. It's a connective tissue disease related to Dupuytrene's Disease (contrature of the fingers/John Elway has it). No cure. No one can say if it will get worse but it can be completely disabling. So, I've been learning a lot from a couple of other forums on how to treat this condition (must say - the other forums are nothing like this one with Lungevity!!! I wish they were as polished, professional, well set-up, etc. as this!). Long story short - The best treatment option for this is radiation (!). Go figure! Here I always thought I'd be getting radiation one day on my lung(s) and lo and behold another disease gets first dibs!  Low dose radiation won't cure but hopefully stop the progression of these nodules growing. I am moving forward with that and hope to start the radiation next month. I also had the RO who will be treating my feet review my LC imaging reports. She felt I should do a repeat scan in no more than 4 months. She was very much in favor of SBRT - she said they would NOT need to place fiducial markers (which I had previously been told by other doc's would be needed). We didn't get into a lot of detail, but she said they would use 4-D technology with "floroscopy" (?). I need more info regarding this. Of course, she is an RO. At the time, I knew I would need to discuss this with my surgical oncologist.

Last October I had a couple of other frightening / concerning health incidents - It seemed to be THE month for medical scares. One breast became inflamed (like mastitis - for those of you who may have had this/breast fed). Ran the gamut of tests and again 5 months later. All is good. No explanation found.  Two weeks after the breast thingy I ended up in the hospital with sepsis... I had no idea how serious this was until I was discharged from the hospital. Liver enzymes were quite elevated for about 6 months; now all normal. Was strange. I don't drink (maybe I should). I don't smoke. I don't do drugs. I am on zero medication. No idea how I got sepsis but I was told if I had waited any longer I likely would not have made it to the next day. Scared the you-know-what out of me and taught me there are a lot of other things that can and may be more likely to "get me" than LC! The medical staff suspect it was from diverticulitis and said to up my fiber intake - but I am a vegetarian (of sorts - w/ fish, eggs), get a lot of fiber, so assuming the diverticulitis is hereditary.

A few months later I was reading through the paperwork I received from the sepsis stay at the hospital and found one report that stated I had a heart attack at some time in the past.... Well, THAT nearly gave me a heart attack! I had no idea. I know I have a heart murmur, but the septal infarction was news. So... I am in the process of getting that checked, Another EKG confirmed the first result was correct re: prior attack. When I had it can't be determined at this time. Can't be seen until mid-July for an Echo and Stress test. Cardio doctor believes I have a right branch bundle block - so, I've been trying to learn all I can regarding heart disease and these issues as well. I'm overloaded. I admit it. 

Last but not least - getting a colonoscopy next month (had to delay due to COVID backlog) as I had a polyp three years ago. Now - ever since the sepsis / diverticulitis incident, I've been finding blood in stool... all medical contacts believe it's likely the diverticulitis or hemorrhoids. I just pray it's not cancer.  I feel like I'm being overhauled this year!

Okay... I know, this is a lot of info. Possibly TMI, but sharing to give an idea as to how crazy life can be when other medical issues crop up in addition to lung cancer... and - I keep wondering - if there is any connection between some of these things (i.e. nodules/connective tissue disorders) and if others have had similar experiences? I am really burned out from so many different medical appointments since last fall. I honestly don't know how so many of you have held up so well with your grueling treatment schedules. Full of admiration and respect for you!

Now... Back to lung cancer. I had a RUL lobectomy in Oct 2018. I was staged at T1N0M0 and only had surgery. I was very fortunate; I realize that and am grateful. However, I have a tumor we're following in the upper left lobe. Last Aug 2020 it was 8mm. Surgeon said he was okay watching / waiting on this for 12 months. I decided I wanted to get another scan sooner (due to all of the other issues I've had) this month. Lung CT images indicate the tumor is now 10mm but clear; no density.  Surgeon had his RO review and they are both in agreement that this is likely another adenocarcinoma in situ and they don't want to over-treat.  Last time I spoke with my surgeon he indicated I would likely need SBRT to treat this.  He called and said he's okay to wait on this as there are new treatments emerging that might be a better option for me. He'd like to have a virtual visit in 3-4 months because his clinic in Seattle will be participating in a clinical trial for a lung cancer study out of Philadelphia. He was in a rush - so, unfortunately, I was not able to get any good information from him. I asked him what the name of the study and did not get a satisfactory answer. All I did gather was that it was called something like "OL3" study out of Philadelphia and that it is utilizing new technology where a green dye is injected the day before that lights up the lung / turns it green.  He said my tumor is "way up at the top" of the lung. He thinks this would be a treatment worth waiting for where he could do a wedge - or I could have SBRT (but he did discuss / share concerns about how SBRT will make future scans difficult to read). All this time I was prepping myself for SBRT and now he's talking about another surgery. He said the surgery would be much easier than the lobectomy - likely one day /night in the hospital. He says I am young and healthy (if he says so!) but we need to see what the cardio tests in July will show. 

I really wish he had more time to discuss this with me, but he called me out of the blue - it was not a scheduled call - so I will likely need to wait until our appt in 3-4 months to learn more.

I put a request in to the lungevity link to get info re: clinical trials. Has anyone else heard of this treatment or what the possible name of it might be? I could find nothing using "OL3" and Philadelphia LC trial in search terms. I did find info regarding "green dye" for various cancer treatments (not necessarily lung).  What I found was "indocyanine green fluorescence" dye, but not sure if this is what my surgeon was referring to. The info I did find did not look like new info at all. It looks like it's been around for a few years.  I want to educate myself as best as I can before I speak with the surgeon again in a few months. I'd like to be able to know if I'd rather go the trial route or proceed with SBRT. He did say that due to my relatively young age (I feel old; I'm almost 63) that I will likely have other tumors show up in the years to come, so the goal is to not over-treat now, knowing I will likely need more treatment in the years ahead. It sucks, yes, but did not surprise me as I had already accepted that lung cancer will be a chronic condition. I may have periods of NED but I don't think I'll ever believe I've been "cured". But is sure is worth trying to stretch things out if possible!

I know this is long... IF anyone even read this far, thank you for your patience with my monologue here!  I keep wanting to attend a Zoom session but I always seem to have a schedule conflict or I'm too worn out. It really has been a wild few months. I need to figure out how to upload a photo here of myself so I have a face with my name (and long posts for those who might want to avoid them!). I tried before but had problems. Zoom meetings sound like a great way to get to see all of you... Thanks for "listening" and any help re: this trial that can be provided. Again, so glad to see/hear so many of you and your stories/advice again! Blessings to all!

Edited by ColleenRae
correction
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Hey Colleen, good to hear from you! Congrats to your son--that's quite the accomplishment.

I hear ya about multiple health issues--it's like a whole bunch of things hitting all at once. I've got arthritis issues, vision issues, flareups of a painful skin condition, a still-unhealed broken collarbone. But I have to put everything else on the back burner till I get through this trial I have coming up.

Anyway, I think I've located your mysterious trial: https://www.cancer.gov/about-cancer/treatment/clinical-trials/search/v?id=NCI-2016-00753&r=1

I've been treated since last September at U. Penn and they are fantastic. Here's a little more info on OTL38: https://www.fiercebiotech.com/medtech/illuminating-cancer-surgery-a-dye-makes-tumors-glow

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Thank you, Terri!  You are wonderful!!!! I wish I could have left multiple hearts for you!

I was just about to sign off the computer here - but I can't wait to read these links later.

You are amazing. With all you have going on (sorry about your multiple health issues as well... I don't think I was very well-prepared or informed about the aging process...ha!)

I was reading posts re: your trial. I can't express what admiration I feel for you - and how much I care that this is a success.

Thank you so much. I will be back to check-in. Getting things taken care of and once my kiddo graduates, I should have more time to follow this site. Very blessed to have you here helping all of us. Take care!

 

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Got so excited, had to look the links over before heading off... found another link.  Not sure if this is for me, but love seeing any new procedures being tried that will benefit those with lung cancer (and ovarian cancer, according to the articles)

https://www.prnewswire.com/news-releases/first-patient-enrolled-in-the-phase-3-elucidate-trial-of-pafolacianine-sodium-formerly-otl38-in-the-intraoperative-identification-of-lung-cancer-lesions-301089563.html

 

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Seems like the main advantage would be to avoid removing too much healthy lung tissue--to the extent the surgeon can clearly see the cancer, not as much has to be removed (though I'd still go for a lobectomy the first time). 

Don't be such a stranger--keep in touch!

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Hey! Great to hear from you. Can't remember if I told you I have a nephew (on wife's side) that is severely autistic. He is just turning 21. Long story..you might look up Mead versus Vaccine board (that is not exact). He lost his case years back to get compensation from the vaccine fund that was set up a long time ago for any harm from a vaccine...the whole mercury thing. I have totally butchered the facts above. I'll blame Chemo brain. Bottom line I have alot of respect and appreciation for what your facing.

Anyway. Between you and Lexie I feel like my life has been a walk in the park. Even with a PE, massive hematoma, broken ankle, thyroid and tachycardia. Ya both inspire me.

Like Lexi said...stay in touch. I've got a scan on June 1. Not much scanziety yet, but I have plateaued. Still NED (as far as I know) but been feeling "off" again for the last month. Nothing major and fully functional, just no endurance and mentally slow. Had a phone interview last week that I totally bombed because I couldn't find the right words if that makes sense. Obviously I never got a second call. Doesn't matter, that alone told me I'm no where near ready for a high stress high paced (but well paid) job. As much as I have grown to hate the term, I am wondering if this is my "new normal".

Thanks for the update. Stay in touch.

Peace

Tom

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Hi Coleen,

So good to hear from you!  You’ve been through the mill over the last year!  I’m so happy to hear from you.  Never apologize for the length of a post, it’s going to be a big help some day for some one going through something similar.   I was thinking about you not too long ago, we won’t be visiting the Northwest this fall, more likely head to Maine. 
 

Fortunately not much new for me, that’s a blessing!   Keep us posted on the colonoscopy... hoping that’s a big nothing & smoother roads are coming soon. 
 

Michelle

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Colleen,

Welcome back. I do hope all your medical problems just stop! You’ve had plenty.

On precision radiation, there are now many technologies to administer the treatment that do not need fiducals. These go by acronyms of IMRT (Image Modulated Radiation Therap) and IGRT (Image Guided Radiation Therapy) and others. The CyberKnife that I had 14 years ago requiring fiducals is ancient technology these days. 

I’m not sure I’d agree with your surgeons pronouncement that precision radiation would make future scans difficult to interpret. Maybe for a short period, then the haze fades and NED is celebrated!

Stay the course. 

Tom

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On 5/20/2021 at 3:58 PM, TJM said:

Hey! Great to hear from you. Can't remember if I told you I have a nephew (on wife's side) that is severely autistic. He is just turning 21. Long story..you might look up Mead versus Vaccine board (that is not exact). He lost his case years back to get compensation from the vaccine fund that was set up a long time ago for any harm from a vaccine...the whole mercury thing. I have totally butchered the facts above. I'll blame Chemo brain. Bottom line I have alot of respect and appreciation for what your facing.

Anyway. Between you and Lexie I feel like my life has been a walk in the park. Even with a PE, massive hematoma, broken ankle, thyroid and tachycardia. Ya both inspire me.

Like Lexi said...stay in touch. I've got a scan on June 1. Not much scanziety yet, but I have plateaued. Still NED (as far as I know) but been feeling "off" again for the last month. Nothing major and fully functional, just no endurance and mentally slow. Had a phone interview last week that I totally bombed because I couldn't find the right words if that makes sense. Obviously I never got a second call. Doesn't matter, that alone told me I'm no where near ready for a high stress high paced (but well paid) job. As much as I have grown to hate the term, I am wondering if this is my "new normal".

Thanks for the update. Stay in touch.

Peace

Tom

Thank you for your post, Tom!  I really appreciate it and hearing how you are.  After reading your post, I felt like a real whiner...! You have also had an enormous amount on your plate - but in all of your posts that I have read, you always keep such a great attitude!

Sorry to hear about your wife's nephew. That's really tough. My son was very challenging in the early years. I am grateful he is not "severe" as he is verbal and functional. I have no doubt that - with the right support - he will be able to live on his own. I just hope he'll be able to land a job that he's comfortable with (he's very into coding / programming). I think he'd make a great employee for someone!

Speaking of employment... I think we can all relate to that feeling of being "off".  I think these many, many months of COVID (in addition to our health issues, stress, etc.) have all contributed to brain fog.  I'm sorry the phone interview didn't go well. But I admire you for putting yourself out there - and you at least landed the opportunity for the interview! But, maybe you are right - maybe it was a chance to assess what you are or aren't ready for.  I'd say try to keep the stress level as low as possible! I'd really like to stop working (part-time self-employed) from home and get hired somewhere. But with my many appointments - and I'm still leery of COVID, vaccine or not - I don't know who in their right mind would hire me... and I would not want the stress of not being able to give 100% to my job, either.

Good luck with your scan on June 1st.  Please know that we will all be hoping for NED once again for you.  You're a great cheerleader here for everyone... Back at ya!

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On 5/20/2021 at 6:30 PM, Rower Michelle said:

Hi Coleen,

So good to hear from you!  You’ve been through the mill over the last year!  I’m so happy to hear from you.  Never apologize for the length of a post, it’s going to be a big help some day for some one going through something similar.   I was thinking about you not too long ago, we won’t be visiting the Northwest this fall, more likely head to Maine. 
 

Fortunately not much new for me, that’s a blessing!   Keep us posted on the colonoscopy... hoping that’s a big nothing & smoother roads are coming soon. 
 

Michelle

Michelle... Hello!!!  So glad to hear from you as well!  Love seeing everyone's photos/faces (you're just as "adorable" as I'd imagined! :-) )

Thank you for your  kind words. I really do tend to ramble on!

I am SO happy to hear not much is new for you... yes, that IS a blessing!  It's so encouraging.

Maine... I have always wanted to spend time there. Have you been before?  Have you been to the NW before (I don't recall, sorry!).  We're starting to feel a bit claustrophobic here. Despite COVID, there are times we've almost felt invaded here. Our real estate market is out-of-control. I don't know who all of these people are moving here - or why they would pay as much as they are for housing - it's insane.  We actually thought about moving to Maine a few years ago; sight unseen. But harder to move now, especially with health issues.

Thanks for your message. I look forward to re-joining all of you on a more regular basis, soon. You take care!

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On 5/20/2021 at 10:22 PM, Tom Galli said:

Colleen,

Welcome back. I do hope all your medical problems just stop! You’ve had plenty.

On precision radiation, there are now many technologies to administer the treatment that do not need fiducals. These go by acronyms of IMRT (Image Modulated Radiation Therap) and IGRT (Image Guided Radiation Therapy) and others. The CyberKnife that I had 14 years ago requiring fiducals is ancient technology these days. 

I’m not sure I’d agree with your surgeons pronouncement that precision radiation would make future scans difficult to interpret. Maybe for a short period, then the haze fades and NED is celebrated!

Stay the course. 

Tom

Hello Tom ~ Always so nice to hear your "voice" and sage advice!  Seriously - I really look up to and rely upon you here on this forum. Always have and always will. So you cannot ever "retire" from here!

I was planning on asking for your opinion re: all of this as things progress.  Amazing that fiducial markers are "ancient" these days when they were just speaking to me about this less than two years ago. It's extremely exciting and encouraging (hopefully, especially, for those newly dx'd) that treatment is expanding and changing so quickly.

My son and I discussed the options ahead. His opinion is to move forward with precision radiation versus another surgery, wedge or not. I am leaning that direction myself. Yes, I'd like to get any and all cancer cells and can see the benefit of this "green dye", but I am concerned about preserving lung function for as long as I can. I have never quite felt the same since my lobectomy (as far as breathing goes), even though my O2 levels remain good. I think the studies surrounding RT (in comparison to surgery) are showing excellent results. How fortunate - really - to be able to possibly even have a choice on how to proceed (apart from doing nothing). 

Thank you for your two bits re: future scan interpretations following precision radiation. If the haziness dissipates over time, then that would not seem to be as big of a concern. Thank you for sharing this.

So nice to hear from you / all of you! Made my day!

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Hi Colleenm I'm glad to hear from you, and sorry to hear that you'r having so many "interesting" medical issues. I'm same as before, cancer-wise, still NED. I had cataract surgery very recently, which went well. Other than that, nothing going on medically. I'm going back to the on-call job at the homeless shelter that I quit on my doctor's advice when the pandemic hit. I'm glad I'll have something to do to get out of the house.

It's great that your son finished his degree-- Congratulations to him!  

I hope you'll be able to keep us up to date with your medical issuea as well as how you and your son are doing otherwise.

Bridget O

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Hellooooo Bridget!

So nice to "see" you! Thank you for your message and updating me. I am thrilled to hear you are doing well / still NED.  Glad you could get those cataracts fixed? (I have 'em too; son as well even at his age!).

This is great news that you'll be returning to the homeless shelter; to feel engaged. Such an important issue - Our local homeless population has been very visible (and shoved /moved from encampment to encampment) during COVID. Heartbreaking. Not a lot I could do but we were running food down on a weekly basis to the largest camp, taking clothes, our sleeping bags, camping chairs... but they they were dispersed. Can't sweep this under the rug........................!  I applaud you for being involved and doing something.

Means so much to see your message. 

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