Reoccurance

This topic has 5 replies, 5 voices, and was last updated 5 years, 8 months ago by fedupnurse67.

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- August 21, 2019 at 12:54 am
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fedupnurse67
Participant
Hi guys, I’m a new, old person to the boards. Its been some time since I was here. Almost made it 20 years! But… I had an abnormal LDH in March, rechecked in July and it was still abnormal but higher then it had been in March. So that earned me a CT Scan of my chest, abdomen and pelvis. Results of that showed enlarged lymph nodes in my retroperitoneal space, basically some enlarged lymph nodes by my spine. That result got me a biopsy of those lymph nodes. Well when I went to interventional radiology they took the biopsies from my front lower abdomen. I won’t get the results back until August 26. I know though that the biopsies will definately be positive for cancer, just what kind?

I’m wondering about treatments now days, and about possible lymph node dissections? Just concerned, and interested.

As a background, I was diagnosed stage 3 in June of 2000. I never had a primary site on my skin. I had a lymph node removed from my left groin that was the size of a small egg and was 90% cancer. It had appeared the lymph node did its job and keep the cancer there in that 1 lymph node. I did one year of interferon, completed in June of 2001. Tolerated it very well from what I’m gathering now.
I have been 19 years NED… till July of 2019. This isn’t a ride I wanted to do again.

Any information would be greatly appreciated.

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- - August 21, 2019 at 2:24 am
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  lkb
  Participant
  Well shoot, welcome back? I ‘m sure you already know treatments have changed a lot since 2000. Both Ed Williams and Bubbles post great information on this board, so a search under their names would be a great place to start. Too, it’s important to see a melanoma specialist for current treatment options. Keep us posted.
- - August 21, 2019 at 2:46 am
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  Linny
  Participant
  Treatments for melanoma are light years ahead of what they were back in 2000. Drugs like Yervoy, Keytruda, Opdivo have saved lives of Stage IV patients and are now available for Stage III patients. Also if your results show you having a BRAF mutation, Zelboraf may also be an option. Basically, interferon is history now.
  
  For known primaries, sentinel node biopsies are done now to determine if the melanoma has spread to the lymph nodes. But for unknown primaries a complete dissection is still performed. Not sure what they’d do in your case though. I also had an unknown primary and had all the lymph nodes removed from my left axilla.
- - August 21, 2019 at 1:06 pm
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  Bubbles
  Participant
  Sorry you are rejoining us here. However, if you are a nurse fo realz, I’m sure you are aware that much has changed in melanoma world since your diagnosis in 2000. In fact, it has changed a great deal since 2011, for it was only then that the first targeted and immunotherapy drugs were FDA approved for melanoma patients. Hopefully you will find that your lymph nodes are enlarged for some reason completely unrelated to cancer of any sort. However, if you are in need of an update on current melanoma treatments, here is a primer I put together that may interest you: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html
  
  If you are dealing with melanoma, you will need to make sure they test to ascertain your BRAF mutation status, as targeted therapy is not effective for those who are not BRAF positive. Here is some info related to that: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/braf-inhibitors-for-melanoma-dabrafenib.html
  
  Yes, melanoma (and other cancers) are not a ride any of us wanted to take. But, you do what you gotta do! Hope this helps. I wish you my best. Celeste
- - August 24, 2019 at 3:55 pm
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  MelanomaMike
  Participant
  Well shoot! Welcome back Kotter! We always leave the Light on for these moments, im sorry FedupNurse, your kinda like me in my great attitude, with all my tests, biopsys, scans etc. ALWAYS coming back positive for Melanoma, we almost “count” on it & already know the results! Lack of Hope? Nope! Its just the way it is for alotta of us.. i can only Xerox (copy) what our family members just said, its a Great time to have Melanoma compared to your brush 20 years ago with Melanoma, theres good Immunal Drugs out fairly recently approved in the past 10 years and less, i imagine youll be a candidate for one or two (as a combo) and most are VERY tolerable!! Keep us posted Fedup, were here for ya’s!
- - August 27, 2019 at 1:21 am
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  fedupnurse67
  Participant
  So definitely a recurrence of my melanoma. Not a candidate for resection. BRAF positive. Looks like my treatment will be ipilimumab with nivolumab. Not sure when treatment will start. Having a PET scan next week, since the oncologist in 3 weeks. So let the fun begin again!
  
  Questions will be now side effects? Can I work? I couldn’t while on the interferon.