› Forums › Cutaneous Melanoma Community › Acral Lentiginous Melanoma – Lymph Node Involvement
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mbrrna.
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- March 14, 2018 at 12:03 am
Hello. My beloved 84-year-old mom was finally diagnosed this past December with acral lentiginous melanoma on the bottom of her foot, after being misdiagnosed for over two years. We don’t have the pathology report yet (even though she had the WLE with 2cm margins and skin graft surgery at the beginning of Feb) but this is what we do know:
– Minimum tumor thickness 1.9 mm with ulceration present and mitotic rate of 1. (Visually, the tumor covered the entire bottom heel area of her foot, so it was pretty radical surgery.)
– CT scan of the abdomen shows a right lower quadrant mesenteric mass measuring 1.8 x 1.3 cm. There are also abnormal enlarged lymph nodes in the right groin and along the right external and common iliac chains with markers in the right groin, 2.3 cm and right common iliac, 1.4 cm.
– PET scan confirmed FDG avid nodes in the right inguinal region, right iliac chain, ileocolic and right retroperitoneum, in keeping with nodal metastases. The doctor says surgery is not an option as there is too much involvement on the right side.
– Chest and head CTs clear. Blood work normal.
I'm assuming this is kinda good news though, meaning the cancer has not spread to any organs, or am I being overly optimistic based on the type of melanoma, the length of time she's had it, and her age? Her doctor is recommending Keytruda, but doesn’t want to begin treatments until her foot has healed more. Should I be concerned about more delays before she gets treatment? Is melanoma only terminal once it spreads to the organs or is lymph node involvement enough? Isn't there a risk of it spreading more if we don't get on it asap?
Thank you. I can't ask the doctor questions in front of mom, as she doesn't want to know, but I'm trying to educate and prepare myself for what's to come.
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- March 14, 2018 at 5:37 am
Hi. There are lots of people on here that will be able to give you lots of great, knowledgeable, helpful info, but I just wanted to share that my mom, just turned 80, has a similar story. She had what she thought was a blister on the bottom of her foot, finally biopsied …melanoma. Ulcerated with high mitotic rate. Two surgeries on foot with skin graft. SLND showed positive. All lymph nodes in groin and lower pelvic removed, with almost half showing microscopic melanoma cells. Wait and see.
Year and a half later, node in iliac chain enlarged with uptake on PET. Biopsied…confirmed, with possible lung met. Onc started her on Keytruda but only gave it three cycles before putting her in a target trial study matching her mutation with a breast cancer drug, Ibrance. It’s working. Node shrunk in half twice on last two PETS and lung whatever non issue.
i know it’s scary. My mom is my best friend. But there are so many amazing drugs available now. Yes, it’s great that her melanoma is still only in her lymph system, but I would get her on something quick. You’ll need time to see what works before her tumor burden increases or works its way into her blood. BTW my mom also has a mesenteric mass that has never changed or shown uptake and some liver spots and lung nodules as well.
I wish all the best for you and your mom!<3
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- March 14, 2018 at 1:17 pm
Thank you so much. Sounds similar – mom was certain that she had hurt her foot and that it was just a large blood blister, but it wasn't going away, and then of course six months ago it started growing very quickly and became ulcerated. We see the oncologist again in two weeks and hopefully we can get the treatment going. I forgot to mention she is BRAF positive. Mom is also a breast cancer survivor – had a mastectomy four years ago – and that did not spread to the lymph nodes so she did not have any other treatment. This is definitely a more difficult recovery, I guess because she's bedridden.
All the best to you and your mom too.
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- March 14, 2018 at 10:09 pm
Yes, being on the foot is horrible. The ulcerated tumor my mom had was the ugliest thing ever, like you could dig it out. It had spread to two of her toes as well. We weren’t sure if they’d have to amputate. She had a wound vac for awhile before her skin graft, then wasn’t able to walk on it for some time. Removing all those nodes didn’t help either. Deep wounds with the drains coming out which took forever to heal. Several bouts of cellulitis. Can’t believe we got through it all. My mom also had her breasts removed some years ago due to fibrocystic disease. She also has atrial fibrillation and a pacemaker. With all that she’s doing great and in good spirits. She amazes me. I’ll pray the same recovery for your mom! 🙂
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- March 15, 2018 at 12:42 am
I hear ya – talk about ugly. My mom kept threatening to pull out the tumor herself – yikes! They didn't use a wound vac and just sent her home from hospital same day. She can just about walk on her tippy toes to the bathroom now, but that does tend to increase the pain, especially in the evening. I'm glad they're not going to do any further surgery. How long was it before your mom could comfortably walk on the graft? She sounds amazing with all she's been through! 🙂
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- March 15, 2018 at 2:10 am
That sure is great no more surgery for her! My mom’s second was to get an even wider, deeper margin and the CLND. After the skin graft, I had her in a nursing home, as she wasn’t supposed to stand at all and all those bandage changings. There for a month to hospital for cellutis, then home. She had both a wheelchair and walker. At first there was concern the graft wouldn’t take (I have some reallly gross pics) then took forever to heal. But by almost a little over two months later we went to Christmas Eve church service with only the walker. So, I’d have to say it was at least three months for solid walking. The other thing though, they took the skin from her thigh, which is very different, thinner skin. She has since had to get a special cushion because she was developing a chronic callus over the bone (hers was on the pad of the foot).
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- March 15, 2018 at 1:14 pm
Thanks for the info. I'm documenting the healing with pics and almost faint everytime I look at my phone. I've had to do the daily dressing changes which confirms my belief that I could never be a nurse. 😉 Initially the plastic surgeon proposed doing a more extensive "flap" surgery instead of a skin graft because of concerns that the skin would be too thin and she could damage it walking (the donor site was also mom's thigh and was actually more painful than the tumor site). However, based on the CT results, she decided just to do the graft, which sounded ominous to us. In light of the success of the new treatments, it remains to be seen whether this was the right choice. Sounds like your mom's doctors were way more aggressive surgically. We don't have the pathology report yet, but the oncologist said even if the margins aren't clear, they would just stick to the Keytruda and not do any more surgery.
So, we're five weeks into the healing now and it sounds like another two months before she'll be walking, based on your mom's experience. We have the walker and wheelchair too. We were talking about adapting her shoes – what sort of cushion did you get?
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- March 15, 2018 at 5:57 pm
I agree that once it’s spread, surgery becomes rather redundant and maybe only useful only if during treatment there is something stubborn (we were hoping before my mom’s nodes were removed it had stopped there). In fact before my mom had surgery, lung nodules were present on her CT scan. She had to have a lung biopsy before they would even bother with the foot surgery, even though my mom was in such pain.
Has you mom had any of her lymph nodes in her groin or pelvis biopsied? Or are they just going on assumption? If they do do a biopsy, ask if they will also do a mutation test (DNA workup) so they know what they’re dealing with. It’s nice to have as many options in your back pocket if the standard drugs don’t do the trick.
We went to a medical foot store with a referral from the podiatrist (though I don’t think you need one). They did all kind of digital imaging and created a custom cushion for her shoe. It shifts the pressure off her graft site and cushions the bone more.
I get you with the bandage changings. Not pleasant! My mom also had lymphedema so I also had to wrap her whole leg every night. Sigh. Then I had to empty the groin drains. What we do for love. 🙂
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- March 15, 2018 at 9:23 pm
There's nothing worse than your mom being sick, is there? From what I understand, they have no plans to do any biopsies and are just relying on the results of the PET scan – the doctor basically said the whole right side of her abdomen is involved. That's why I was wondering about the seriousness of it just being in the lymph nodes, as the doctors seem rather pessimistic. I'll ask the doctor about the biopsy and DNA workup at the next visit. I'll also check out the local foot store. Many thanks.
My best to you and your mom.
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- March 16, 2018 at 12:31 am
Your mom has a really good chance with Keytruda, the wonder drug. In fact I’m not so sure it didn’t help my mom in the three cycles she was given it before switched to Ibrance. Her lymph node got bigger on Keytruda, but from my understanding that can happen before the nodes start to shrink. The immune system goes into overdrive with everything fighting each other. Makes sense the node would become bigger with all that action going on. Anyway, our Onc understands that if the Ibrance (she’s on cycle 9) quits working, we want to go back to Keytruda for a longer try. My moms next PET is beginning of April. Scanxiety is the worst. Keytruda side effects my mom had were: rash on arms, like a sunburn, achy joints, mostly hands, and made her really tired. Effects weren’t that bad though, just noticeable. Let me know how you mom does! I’ll be praying for her!
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- March 16, 2018 at 4:23 pm
Thank you – will let you know how she does. It'll be interesting to see how her immune system kicks in – mom has had alopecia universalis for the past 30 years (total hair loss), whereby the immune system mistakenly attacked the hair follicles.
Good luck at the next scan… hoping for the best for your mom.
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- April 25, 2018 at 12:52 am
Hi! I saw on another post that your mom is now NED and just wanted to touch base with you – that's such wonderful news! I'm so happy for you.
My mom had her second Keytruda today and seems to be coping well – no real side effects after the first one, just tired.
She is still struggling with pain from the surgery though – especially the donor site area on her thigh. She's now been referred to a palliative care team as they specialize in pain management, so hopefully she'll start to feel better soon. She hasn't been able to put the foot on the floor at all, even though the doctor wanted her to start walking on the heel. It's still not healed completely.
Anyway, I just wanted to say congrats to you and your mom. It's nice to hear good news!
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- March 14, 2018 at 2:31 pm
Sorry you and your mom are dealing with this. So, hard! I can see no reason to delay anti-PD-1 as there is no data to support the idea that it would cause problems with wound healing. However, a small delay in starting it will probably not make too much difference either.
Here is a primer I put together regard basic melanoma treatments, there is also a link to a list of acronyms:
You are great to look out for and learn the melanoma ropes and jargon for your mom. It is important. Ask more questions as you need. Given your mom's age, you may find these posts heartening as well: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=elderly
I wish you both my best. Celeste
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Tagged: acral, cutaneous melanoma
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