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Update on Leslie - a strange trip it has been.

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Update on Leslie - a strange trip it has been.

Posted By
Leslie'sHusband
5/6/2020 6:23pm
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Replies: 3

It's been a while since I've even been on this forum, let alone post, so I thought I'd post an update. For those who may not remember, my wife Leslie was diagnosed with melanoma (ended up being 3b) on her left thigh, with the sentinel lymph node testing positive in Feb of '14. After three surgeries, the last being a complete lymph node dissection of the left groin area done at Duke Cancer Center in April '14, she's doing well. None of the additional nodes removed tested positive. She had CT scans done every 6 months for the first 3 years, and then 12 months for the next two years. All were clear, at least as far as melanoma is concerned. From the very first scan, the docs noted a small spot on her right lung, but never really mentioned it again. As far as Melanoma is concerned, she has been NED for over 6 years now. We were expecting to be done with Duke after her year 5 scan, but that spot on her lung suddenly became important... It grew almost 50% from year 4 scan to year 5 scan. Melanoma doc referred her over to the thoracic docs for further review. Consult with him gave us two options: Wait and watch, or go get it. They couldn't biopsy it because it was almost dead-center in the lobe of the lung. She had him go get it, but they had to take the upper lobe of her lung to get it. Turned out to be an adeno carcinoma. Lung Cancer. Good news is that it was very small, and it was caught VERY early, before it had a chance to spread. Now, instead of being done with the Duke cancer center, we got to start over with the scans. 6 years NED w/melanoma, 1 year NED w/lung cancer. Next scan will be done locally due to the Covid-19 thing going on, but it will still be read by Duke. All of the doctors and staff at Duke have been absolutely wonderful to deal with.

Dave

Hi Dave & Leslie,

I though I was the only over achiever!!!

I have an almost identical story.

2008 Melanoma stage 3a
2013 Melanoma recurrence
WLE (too many to count)
SNB
LND
HD Intron 20 days
1 year GMCSF
Ippi 4 times
Pembro 20 times
Many, many surgeries...

2018 NSCLC Stage 3b EGFR+ left upper lobe. Yes, we saw it earlier and figured it was Mel. When pembro didn't touch it, we decided to do a biopsy.
Carbo + Pemex Chemo x 4
Radiation x 31 :-(

2019 NSCLC stage 4a recurrence to neck nodes and chest nodes, spine (T2) and iliac crest.
Radiation to T2 3 times
Radiation to iliac crest 3 times
Tagrisso 80mg daily

I'm still on Tagresso and doing fairly well tollerating the sides. I'm mostly just tired.

It seems perverse to say that finding someone else who has both Mel and Adeno NSCLC is encouraging, but it is. I hope it encourages you both, too.

Shalom,
Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

Sorry for what you and Leslie are dealing with, Dave. And Julie is basically the most amazing human on the planet!!! I too am part of the strange Melanoma followed by CRAPPOLA club, having been diagnosed with a very rare exgoblet cell carcinoma of the appendix in 2018, discovered on what were to be my last follow-up scans for Stage IV melanoma (15 years post diagnosis) in 2018. I had multiple surgeries, an adjuvant CAPOX (old school chemo) regimen and remain NED for both cancers currently. Apparently, we three are not alone:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/melan...

Dealing with a second cancer diagnosis has been a real slap in the face. But.....we pick ourselves up and on we go. I hope things go as well as possible for you both! celeste

You two ladies have been through much more than I could even begin to imagine. Bubbles (Celeste?), I spent quite a bit of time reading your blog when Les was first diagnosed and I was searching for information. I was amazed at what you had gone through at that point, and I am happy to see that you are still here, continuing to pass along your knowledge and advice. Julie, I simply don't know what to say. I can't even begin to compare what you are going through to what Les has gone through. So far, she has not had to have any type of meds or chemo. A surgeon's knife has taken care of hers so far. I'm thankful for that. I wish the best for you.
Les asked me last night why I was reading this forum again. At the time, I really didn't have a good answer for her. Now, I think I know. I just needed a reminder about why I need to be thankful to have her with me. In a strange sort of way, having melanoma could have saved her life by allowing us to catch her lung cancer very early on, before she had any outward symptoms at all. We've both said that, several times. Strange times. She complains about the 3 hour drive to Duke to see Dr. Mosca for her melanoma, and now Dr. Klapper for her lungs, and says she wished we could find some place closer. I tell her that she's worth that little drive, and much more to me every time we make that trip.
I guess I need to correct one thing about my post... Officially, she's been 6 months NED for her lung cancer. She was due for her 2nd lung scan this month, which would make it 1 year when it comes back clear. It's been scheduled locally this time because of the Covid mess going on, with the info being sent down to Duke. Both doctors will be reviewing the same scan. Personally, I would rather drive her down there to have the scan done.
Dave