› Forums › General Melanoma Community › 14 Years NED- stage 3 and now have a nodule in calf.
- This topic has 6 replies, 4 voices, and was last updated 5 years ago by jen.bren.
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- March 31, 2019 at 4:27 pm
Hi all- I’ve been negative for 14 years of stage 3, and had it twice in total. The last time in 04 I had nodules coming out of my thigh, one out of my knee, and many lymph nodes. I had Cisplatinum, Vinblastein, and Temodor, then all nodules and groin nodes removed via surgery and 2 more rounds of chemo.
Now 14 years later I felt a small nodule in my calf.
I am having a PET scan on April 11th and a removal of the spot on the 18th.
Glad to hear some of you have done well on the newer drugs.
I don’t know much to say but that I am freaking out.
Prayers to you guys and all of us!
I am 44 yrs old now.
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- March 31, 2019 at 11:16 pm
Hey Jenn,
I posted on your prior note and gave you a link to many articles regarding current adjuvant care for Stage III patients with melanoma. In addition to that you might like to look at this primer I put together re current melanoma care (there is a glossary of acronyms at the end):
Hopefully, this nodule is not melanoma. But if it is, and if it were me, here are some things I would think about:
1. Make sure you are seeing a melanoma specialist. You are a walking history of melanoma. Treatment options are very different as of 2011, even more recently when talking about adjuvant care.
2. In the primer I go over intralesional therapy. If you have a nodule that is palpable through the skin…biopsy, rather than removal may be your best bet. Then, if it is melanoma, intralesional therapy (meds injected directly into the lesion) can do away with the injected lesion and engender a "by-stander" effect to get rid of surrounding things.
3. As I mentioned, adjuvant immunotherapy or targeted therapy may be an option for you. You should have this biopsy tested for BRAF status…which should be standard of care these days.
4. Another reason for biopsy, rather than removal, is the fact that NEO-adjuvant studies are showing even better results that adjuvant treatment in some studies. You may not want to roll that way, but it is worth a discussion with your doc.
I'm sure others will chime in. Still hoping it will not be melanoma. But, you have much better treatment options today, should you need them, than those you have already endured!! yours, celeste
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- April 1, 2019 at 2:12 am
Thank you so much, there certainly are more options these days.
I do have a melanoma oncologist and if it would be another recurence I would go over which treatment or where is the best option for me.
I travelled to Sloan Kettering in NY for the last big one.
I will ask him regarding removing or biopsying it also.
The PET scan is first so that will tell alot- like if it has gone to other places.
Thank you so much for the relpy, i’m still figuring out my way around this site, and wow there really are more options.
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- March 31, 2019 at 11:27 pm
Prayers for you as welll.
Make sure you see a melanoma specialist. The treatment of melanoma is rapidly growing and changing. I’m doing neoadjuvant therapy, which is immunotherapy with the tumor still present. This is followed by surgery and more immunotherapy.
Best of luck to you
lucy
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- April 1, 2019 at 1:59 pm
So sorry to hear you found a scary nodule on your calf.
If this turns out to be melanoma, I just want to reiterate that treatment options have changed over the past 14 years, BIG time. The intralesional therapies that Bubbles mentions are particularly interesting and are killing melanoma in patients. Drugs like Opdivo and Keytruda have had durable responses in Stage IV patients and are now being offered to Stage III patients. If you do need to head to Sloane, they will be on top of all these options and others.
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