Lori0529

Similar story.
Right Leg/Right Groin

As Celeste always informs, treatment has NEVER been better.

Are you seeing a Melanoma specialist??
They’ll have the absolute best treatment recommendations.

You’ll likely face a combination of treatments.
Neo Adjuvant (before any surgery)
Possible Surgery
Adjuvant (after any surgery)

My 2020 treatment plan
Neo Adjuvant — a few rounds of immunotherapy Opdivo/Yervoy (infusions)
Surgery (Removal of the lymph nodes)
(I did not receive additional treatments after the surgery)

In 2021, I did have a recurrence in an Adrenal Nodule
I’m BRAF+, so treatment plan has been:
6 months Braftovi/Mektovi Targeted Therapy (pills)
Surgery to remove Adrenal gland
6 months Braftovi/Mektovi

So far, grateful to say I’m doing well
No additional recurrences
Recovered well from BOTH surgeries

Please reach out if you have questions.
Sorry you’re having to add all of this to your “young mom” life — not fun — but you can do it. : )

I think I may be in a similar (or same) clinical trial at Moffitt.

My history:

2006 — Melanoma in situ lower right leg
2015 — Recurred in right upper thigh — needed Wide Excision — Stage 2B
2020 — Surveillance CT scan revealed swollen groin lymph node — confirmed as Melanoma
Immunotherapy followed by Superficial Inguinal Lymph Node Dissection
Braf+
2021 Confirmed Melanoma in right Adrenal Nodule

Entered clinical trial:
Neo Adjuvant BRAF/MEK for 6 months (2021 July – Dec)
Surgery — Laparoscopic Adrenalectomy (2022 January)
Randomized Adjuvant treatment (Targeted Therapy or Immunotherapy) depending on the surgical pathology

Surgery was 4 weeks ago and am now expecting to begin adjuvant treatment soon.

In July and August, I had trouble taking the BRAF/MEK full doses — very sick
Dosage was reduced for the remaining months and I felt pretty good — 80% normal I guess
Only side effects were joint pain and hair loss/texture change.

I had my last round of immunotherapy in April of 2020

— had pretty severe joint pain — a prednisone taper helps, but it’s also my understanding that a steroid like this works against the immunotherapy effectiveness.

In January and February of 2021 I tapered my prednisone dosage and stayed on 5 mg of prednisone daily and it really helped.

I stopped taking it in preparation for the COVID vaccine and have not taken it again.

Joint pain has returned, but not nearly as severe as before.

Please reach out if you want to connect with someone a little further down the road.

All of it can be pretty overwhelming at times — I’ve found the “one day at a time” mindset to be helpful.

Started the 6-month trial in July and as hard as some of the days (particularly nights) were —- suddenly it was December, the last dose, and time to schedule surgery.

Surgery and recovery often better than I imagine too.

Faith, family, friends — you’ll need all of them.

Sent you an email — hope you received it.
Hoping you respond really well to the treatment and receive lots of encouragement along the way.