@lori0529
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- May 13, 2022 at 12:35 pm
Hello ScoutSimilar story.
Right Leg/Right GroinAs 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/MektoviSo far, grateful to say I’m doing well
No additional recurrences
Recovered well from BOTH surgeriesPlease 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. : ) -
- February 10, 2022 at 10:06 am
Hello MMI 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 NoduleEntered 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 pathologySurgery 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. -
- June 17, 2021 at 4:51 pm
Hi TrentI 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.
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- February 11, 2022 at 9:46 am
MM-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. -
- February 13, 2020 at 1:02 am
Thank you so very much for your insights —You’re correct — only a biopsy of the swollen node has been done — not surgery.
On Feb 17 (Monday) I will get more details on the overall plan as well as begin Immunotherapy.
My initial impression is they may monitor what happens with this node during the Immunotherapy treatments
Can how it responds be a helpful gauge as to how the treatments are working?Thinking I will begin all of the treatments as planned and then try to consult with Moffitt as well — prior to the more extensive surgery that is being recommended.
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- February 12, 2020 at 3:24 pm
Additional updates:Jan 31 — Bi-annual CT scan of Chest, Abdomen, Pelvis
Feb 3 — Follow up with doctor — scan shows 19mm enlarged groin lymph node very suspicious for melanoma
His treatment plan included the following before seeing him in 2 weeks on Feb 17
Brain MRI
PET Scan
Surgeon Appointment
Ultrasound BiopsyHe explained that it was important to get moving on all of it.
He also provided me with Yervoy and Obdivo information and explained that my case would most likely involve immunotherapy followed my surgery to remove the groin lymph nodes.Feb 3 — Had Brain MRI (without contrast)
Feb 4 — met with surgeon who agreed it was melanoma suspicious
Brain MRI was clear
He described a treatment plan that would include immunotherapy followed by a Superficial Inguinal Lymph Node Dissection
I asked if immunotherapy could lead to avoiding surgery and he said not in my case because of the size of the lymph node
Feb 11 Ultrasound Biopsy
(Before going in for the Biopsy, the doctor office called to let me know they are scheduling Round 1 of Immunotherapy for Feb 17 after my next doctor visit)
Feb 12 (Today) Looking at the Biopsy report in the online portal it says:
Preop diagnosis: Melanoma
Postop diagnosis: SameStill waiting for PET scan to be scheduled
I am in Florida
Earlier in the week, I called Moffitt and they explained that they need a current Biopsy report before they can schedule a consultation.
Any feedback on this potential treatment plan? Anything I should be asking/doing?
Moffitt is 90 minutes away — what are the advantages of pursuing treatment there?
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