chemo/rads cured my mate's pancoast tumor and too much more :)

[JanineT]

Hi All,

I'm Janine, I've been a member on cancergrace.org since 2009 just before my husband's diagnosis.  At the time I thought all I needed from the web was info on his treatment options so I ignored forums like this thinking I wouldn't find real support in a forum.  Looking back I see the error in my thinking.  But I was lucky because at that time the best info I could find about pancoast tumors was on Grace so my searches kept returning me there until I found the forums were moderated by a constant flow of groups of 3 practicing oncologists who specialized in lung cancer and a Vietnam veteran pilot named Ned.  They answered every question and at times discussed among themselves opposing points of view.  It was an amazing opportunity to learn and find the support I desperately needed.  As you can imagine the forums were full of wonderful, supportive, caring people.  So I found that support from others was important.  Those days are gone and left to man the front desk are Jim and I and occasionally a faculty onc is engaged to field questions beyond my pay grade .  I don't mind that we're no longer a busy support forum but I do want people to know they should feel like they can get good, well researched and reasoned answers to their questions.  Though not eloquent I do strive to point people in the right direction.  And, we are getting an upgrade to make us more user friendly, finger crossed!

My husband started as a carpenter and ended up a cabinet maker working for himself he had/has a shop behind our house and made cabinets and custom kitchens.  After the pancoast tumor, surgery, radiation and 3 years of chemo he is no longer able to work but he is here living life.  He is one of the extremely very lucky.  He was diagnosed after 2 undiagnosable core needle biopsies, one undiagnosable VATS, and finally a diagnosable open thoracotomy.  He had a pancoast tumor that destroyed 3 ribs, reached just into the brachial plexus and oh so close to a foramen in the spine.  All of these places made the tumor unresectable, which we knew going into the VATs turned open thoracotomy but a biopsy was needed to start treatment.  By the time he was "properly" diagnosed he was in pretty bad shape.  He still has a lot of pain that runs from the surgical incision to where the chest tube resided for 9 days.   He has lots of other pains and sob from one or all the offenses thrown at him. 

He started with chemo/rads that may have cured him.  Then a spine nodule was found and 5 radiation oncs, a surgeon, and his med onc agreed that it was progression, it was radiated and proceeded as if he was now stage IV.  He took tarceva for a year then a 3 cm nodule was found in the other lung, it was biopsied and guess what...undiagnosable but it looked like all the others so...progression.  No one wanted to try again for a biopsy, this one had caused a traumatic lung collapse that put him in the hospital for 3 days.  I think this is when he started gemzar.  Navelbine fits in here somewhere.  July of 2012, he took a treatment break and he never progressed.  We'll never know exactly what went on.  Neither of the metastases were ever proven (the nodule in the other lung was never radiated and chemo wouldn't have cured it) so he may have been cured with the first line chemo/rads or maybe it was his last chemo tx in July of 2012 that killed a lingering cell that would have otherwise caused recurrence. 

We are lucky, we know that.  Everyone should be at least a little prepared to grow old especially with the pace anti cancer treatments are progressing.

 

What brought me here today is to share Grace's latest Targeted Therapies Live Forum.  An English version and a Spanish one.  I want as many as possible to find it.  These can be so timely and helpful.  They can both be found here and check out the agendas to narrow down your search and know that there's always unexpected gems of info sprinkled throughout. 

 

Thanks for letting me go on.  I've not written about D's experience in years. 

 

 

[Rower Michelle]

Hi Janine and welcome.  Thank you for sharing your story with us, it’s a hard experience to relive however we’re glad you took the time to do so.  Every message of hope makes a significant contribution to our future family members.   
 

Learning how to find reliable high quality resources for survivorship is essential as informed patients live longer.  
 

Michelle

[LouT]

Janine,

That's quite a situation you and your husband endured and I'm glad that you were both successful.  Hope is the most important medicine we can bring to this fight against our cancer and your story will provide some of that for someone.  I'll check out your link so thanks for sharing.

Lou

[Judy M2]

Hi Janine, thanks for sharing your husband's incredible story. Treatments, even when successful, can leave us with undesired side effects long-term, but at least we are still here. 

As a matter of fact, I watched the recent Targeted Therapies presentation by cancerGRACE on Facebook. It was very informative and interesting to hear the participating oncologists' opinions about treatments and emerging biopsy and biomarker testing. I'm not active on their forums, as I already follow several private LUNGevity FB groups relating to my particular mutation (EGFR) and targeted therapy (Tagrisso). 

I hope you'll stay with us. Many of us (me included) have difficult experiences and it's important for people to know that it is possible to survive the setbacks. 

[JanineT]

Thanks Michelle, Lou and Judy,

Thanks for the lovely welcome.  From what I understand there's no real typical cancer journey and most of the time people go through too many what is considered rare complications.  So in that respect D's problems would be considered typical.  It sounds like an oxymoron rare complications are typical.  Such is the life I know you live.  My niece and her husband were both diagnosed with curable cancers her's was fraught with issues and his was a simple surgery (so to speak).  We joke that he didn't have "real" cancer. 

Spending a bit of time getting the word out on how to be your own (or your loved ones) advocate seems the least I can do for all the luck we've experienced.  If D had a simpler journey I assume I would have walked away from Grace and cancer's social media.  But with 3 years of treatment another 3 years of lung issues and onc visits and waiting for the the return it's become a piece of me though I no longer wait for the return and assume it's gone.  Don't press me on the word assume . 

Best of luck to you all,

Janine