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Newly Diagnosed

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Newly Diagnosed

Posted By
tracievh
6/21/2020 4:28pm
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Replies: 10

Hi,
I was diagnosed with nodular melanoma Feb 28th 2020. It was on the back of my leg above my knee.
I had a PetScan prior to surgery which was clear.
Had surgery March 13th - WLE and SLNB. WLE had no margins, there was a very small amount of cancer in the lymph-node. It did not exit the lymphnode but I was told that did not matter. This bumped me to Stage 3A. (From 2A)
I am positive for the BRAF mutation.
I started Opvido just one week later from surgery.

I have had 4 treatments so far. I will receive 12 total. No side effects thus far. No new lumps or skin lesions. (I just saw my dermatologist a few weeks ago who did the skin and lymphnode check)
Because of this, my oncologist wants to wait two weeks before my 6h treatment to do a CT Scan.

First Question: Does that sound right on the scan? 6 months if no new concerns?

I am still healing from the surgery. The SLNB site developed into a seroma that got infected. Had a drain a for a while. I had a skin graft about 5 weeks ago now. It is doing okay, but there are two holes that have not filled in and I have another seroma below the wound right in the crease of my knee.. I see my surgeon this week.

My oncologist said that if I tolerate all 12 treatments and have clear scans, he would consider me cancer free. After all the reading I have done, I am struggling to believe that.

Second question: Do most Stage 3 melanoma diagnosis eventually have a recurrence?

Third question: I am terrified to be in the sun now. Can we be in the sun with sunscreen on? I am not talking about baking in it all day.
We live in a location where we have a very short summer, and we like to go boating. I feel like I can't even sit in the sun at all now. (With sunscreen on!) I have on history of a bad sunburn when I was a teenager where I fell asleep on my back. Other that, I have had some sunburn on my shoulders and chest, but nothing like a blistering kind. I DID use tanning beds to get base tan because I am fair skinned - which I will never do that again.

Thank you in advance for any help!

SABKLYN - (6/21/2020 - 6:44pm)

Hi Tracie,
Sorry you have the need to be here, but this is a great site for advice, etc. Lots of folks with much knowledge to share. The first several weeks after digesting the diagnosis really suck! I had scans every three months for the first two years post diagnosis/SLNB/CLND. The protocol may have changed, but I would definitely ask your oncologist why 6 months rather than a shorter time frame. Secondly, I would make sure your oncologist is a melanoma specialist. Key factor in your treatment plan! I hid from the sun for the first few months after diagnosis, but soon started going out during the day making sure I used sunblock. I’m an avid golfer and play 40-50 rounds a year and I’m in Georgia! I think the key is to make sure you LIVE with the melanoma diagnosis and as long as you take some simple,precautions, you can enjoy the things in your life that bring you pleasure. I believe The precautions are recommended because you have shown susceptibility to develop melanoma. However, this has no bearing on the lesion that was removed as far as I’.m aware. Lastly, stage 3a generally carries a favorable prognosis. I was diagnosed in 2011 and after my CLND and a clinical trials months afterward, Imhave had no progression. The addition of Opdivo (not available when I was going through this) is an added benefit and enhance your chances for progression free outcome. Not sure over what period of t8me the 12 infusions will be, but in my mind that vigilance over 5 years, including regular check-ups and scans enhance the likelihood of a good outcome. I would just add that you make sure you ask and get answers for all of these concerns and be an active participant in your care plan. Hang in there. The initial tidal wave of dealing with this will subside,and you will integrate your care into your regular life. As I said, always find ways to LIVE with melanoma, rather than let it dominate you. We are ALL here for you.
Stan

tracievh - (6/21/2020 - 7:27pm)

Thank you for the encouraging words! :-)
My oncologist does specialize in melanoma and he has a few trials one of which I am part of. My surgeon has a special interest in melanomas and came highly recommended. The oncologist and surgeon have worked together for many years now.
I get an infusion every 28 days. So the 12 treatments are basically over a course of a year.
My husband just reminded me that my oncologist said we'd do the scan just before the 6th treatment unless something new came up, and that he felt I was doing good and did not want to expose me to multiple scans unless needed. He did mentioned that I would need to be watched and have scans after treatment ends. Same for dermatology check ups; which are every 3 months for me.

Rob is grateful - (6/26/2020 - 8:34pm)

Tracy, I’m in the exact same boat you are in. I went from 1b to 3a with microscopic involvement in a lymph node. You came to the right place for encouragement and knowledge. I just received my third round of Opdivo and my second set of scans is scheduled for my 6th treatment as well. The only side effect I’ve had was a little fatigue
As for being out in the sun, I’m an hvac technician in west Tennessee. At first I was mortified and considered changing careers. I talked to my dermatologist and he set me at ease. I bought a few wide sun hats to wear in the sun instead of my usual ball caps, purchased some SPF 50 long sleeve shirts and work pants. The cool thing is I learned the spf 50 long sleeve shirts and wide brim hats make you feel cooler than shorts and a T-shirt on hot days. When I’m not working in the sun all day I will wear shorts and T-shirt with a good spf 50 mineral sun screen. I like blue lizard best. Live your life. If you want to get on the boat and enjoy being outside, get a sun hat, put on your favorite swim suit and some good sunscreen and go enjoy the day!!!!!

Bubbles - (6/21/2020 - 8:05pm)

Welcome, Traci. Sorry you have to be here, but melanoma is not for sissies and you have just tapped into a bunch of smart and caring melanoma peeps! Amen to EVERYTHING Stan just said. Yep, melanoma sucks great big green hairy stinky wizard balls! NOW - LIVE!!!!! I have been LIVING with melanoma since 2003. In 2010 after surgery to a lung met and radiation to a brain met, I gained access to a nivolumab (opdivo) phase 1 trial as a rattie in the Stage IV adjuvant arm. With my last dose in June 2013, I remain NED for melanoma to this day with no further treatment. Here is a report I put together for Stage III melanoma peeps utilizing adjuvant treatment if you are interested: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/03/adjuva...

As far as the sun - LIVE!!! Yes, use sunscreen and common sense. Avoid being out at mid-day. Hats and umbrellas and protective clothing are your friend. I hike, run, travel (well - I used to!), garden, and do all sorts of things indoors and out. Yes, from now on you are living with melanoma. So be sure the emphasis is on LIVING!! I wish you my best. Celeste

tracievh - (6/22/2020 - 8:29pm)

Wow, that is amazing! I am glad I found this forum with supportive and knowledgable people. I should consider myself lucky that I have access to opdivo right away. It seems like its been very successful. I will look at the link for sure. :-)

Jdc - (6/22/2020 - 2:22pm)

Hi Tracie, I am also very sorry you are here. I currently am stage 4 as of april 2017 and still having scans every 3 months until further notice from Onc. Glad you seeing a melanoma specialist and if you ever question anything don't be afraid to seek a second opinion ! I wish you the best!

Joe

tracievh - (6/22/2020 - 8:31pm)

I see my surgeon Wednesday and I thought I would mention to him about the scan at 6 months to see what he thinks. Do you get petscans or Ct scan?

SABKLYN - (6/24/2020 - 6:59pm)

After my initial PET scan, all others have been CAT scans. Not sure when that changes, but I suspect if there is actual or suspected progression, then PET scan may be used again to further confirm?

Jdc - (6/26/2020 - 10:45am)

Hi Tracie I have been getting head to toe PET scans every 3 to 6 months and brain mri every 6 to 12 months, both for the past 3 years, my Onc said the 3to5 year period is important time to watch closely. Hope this is some help to you! Wish you the best!

Joe

jbronicki - (6/27/2020 - 12:01am)

HI Tracie,
I'm sorry for the delay in response and even sorrier that you have to join this group, but i'm so glad you joined as you will get a wealth of knowledge. I can only imagine the anxiety around the sun with. I'm not the patient, my husband was diagnosed with nodular melanoma, 22 mm deep and considered metastasized when he initially went in. He had surgery at MD Anderson and he does follow-up there. The protocol I have seen for most considered "high risk" (remember this is risk, doesn't mean recurrence will occur though) is 3 month scans in first 2 years, followed by every six months until year 5 and then yearly through 10 years. In terms of what type of scan you will get, unfortunately many times insurance drives this. My husband, who is considered stage 4, insurance only covers CT scans for follow-up. His doctor at MD Anderson couldn't even convince the insurance company to cover Brain MRI last time so had to do Brain CT scan. We live in Houston, had to accept that we live in the sun, so we mitigate risk appropriately with sun screen and skin checks and then as Bubbles said, we live! I will say though the first year was anxiety producing, even watching him mow the lawn in the sun was anxiety producing, you just learn to live with this and understand how to mitigate the risk.

I would definitely ask your doctor about the scan schedule and ask what protocol they are following. You as the patient have that right to ask what practice the doctor is following and why.

Many hugs, wishing you all the best,
Jackie

Jackie <3