@beverly
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- February 7, 2019 at 8:17 pm
Thanks for sharing, Kevin. I am new to this forum. Read your profile – and my Breslow depth is 8mm as yours was years ago. Still in early stages of finding out things…just have the initial pathology, waiting on WLE and SLN mapping surgery and staging. Doc wanted PET CT scan before surgery but insurance denied. Waiting on peer to peer. Doubt it will be approved. Maybe a CT. Seems they would have to approve some sort of imaging with an 8mm and having a previous melanoma in 2013. Really worried about insurance approvals going forward relative to my melanoma.
Anyway, congratulations! Wishing you all the best.
Beverly
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- February 7, 2019 at 6:33 pm
I know the fear, I'm there right now except I do know I have melanoma again, and while the doc hasn't said it yet (waiting on reviews from panel of experts from not only this path report and slides, but last path report and slides from years ago). And was supposed to have PET CT scan this morning (cancelled due to insurance denial). But my pathology reports references "nodular deposits" and I know the Breslow depth (I'm scared to even say the depth). My recent was a lump (no real color to it – barely if any – almost skin colored) by the scar from original Stage 2A diagnosed Dec 2013 with surgery Jan 2014.
I know it has to be tough with younger children. My son is about to turn 25. I am only 50. And I feel fine. I don't pretend to know exactly how you are feeling since I am not you and am not in your shoes. But we all have experiences with Melanoma. So that we have absolutely in common. We do know the multitude of feelings that go with this diagnosis.
Yes, the internet has scared me. But also has given me hope. In any given day I go through sadness, fear, anger, alone, worried, hopeful, strength, feeling brave, fighter mentality, and then right back to feeling alone (while I know I'm not), worried, lost, scared again.
I am new to this forum and am finding my way through all of this myself. I'm here as I know everyone else is. Keep us posted! Prayers!
Beverly
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- February 6, 2019 at 9:19 pm
Hi, I am new to this Board as I was just recently diagnosed with Melanoma (a recurrent Melanoma since close to same area as last). It is deep, so doesn't sound favorable. But no official staging yet as docs are reviewing path reports and slides from original melanoma from 2013 and this recent one just biopsied a week ago. Plus I have PET CT scan scheduled for the morning. And I too have Crohn's. I am sorry to hear about your husband. I was just diagnosed with Crohn's in 2016. I haven't been on any meds because Gastro didn't want to because of my history of melanoma. He said my Crohn's was mild then. It was limited to small area in terminal ileum. Anyway, it has progressed since 2016 and I don't know what they will do for medication. Having seen my new Crohn's specialist yet. First and foremost, oncologist wants all my results in from this Melanoma and once we see where things are with that, then I guess Gastro Doc and the oncologist will work together on a treatment plan for both. Having both Melanoma (or any cancer) and Crohn's would seem to be quite a challenge from what I understand when it comes to treatment as many of the standard medications have risk of cancers. I don't want to scare anyone…heck, I am scared to death right now. But I would encourage you to get his oncologist and gastroenterologist together to come up with an appropriate treatment plan.
My brother works in pharmaceuticals and has for many years. He has a colleague that says for Crohn's, Entyvio is very selective and works in the gut in a targeted fashion. It is given as an infusion (30 minute infusion). Entyvio will be released as an injection later this year. And says that drugs llike Humira and Remicaid have "black box" warnings and are, I believe, immunomodulators which you wouldn't want anyone with cancer taking. I don't know much about Stelara. But I would not wait until next week…I would call the doc to let them know about the pain immediately.
When was he diagnosed with Melanoma? What are the specifics if you don't mind sharing? Like how deep was it? Was it a mole or nodule? Is / was it just confined to thigh?
Wishing you all the best.
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- July 25, 2019 at 4:07 pm
Thanks so much for your response, Celeste. Great points to consider. I am worried that while there wasn’t any lymph node involvement that showed on PET scan, because this was an In Transit, that there may be microscopic cells traveling around in lymph / blood vessels (or be elsewhere) and cells have just not yet clustered together enough to show on imaging. This In Transit was a skin coloried lump that appeared 5 years later just a few millimeters away from my first melanoma on my lower back with the first melanoma being a mole. I first noticed the lump in August last year with the doc saying adamently it was just a pillar cyst and doing nothing and then finding out in January it was indeed melanoma. So I don’t know what it means going 5 years before it came back this last time and what it might mean in terms of chances of it coming back again as In Transit (or elsewhere) being that the In Transit was hanging around as a visible lump for at least 7 months before the surgery date.I want to know what a doc would recommend being this is my 2nd melanoma 1) as if I did NOT have Crohn’s 2) taking my Crohn’s into consideration before I had Crohn’s surgery in June and 3) taking into consideration the Crohn’s with the surgery removing the diseased portion and not reconnecting but doing the stoma. Again, the oncologist consulting with my Crohn’s specialist, suggested my best chance with immunotherapy would be with the surgery BUT doing the stoma instead of re-connecting. But now local doc saying she’s not sure of benefit starting immuno now. I’m just at a loss as to what to do. By the way, my Crohn’s specialist is Dr. Dario Sorrentino (very highly regarded in Crohn’s) with a very impressive resume on linkedin. Fortunate to have him.
Thanks so much for Dr. Slinguff’s name…I think I’ll go see him.
And so glad you continue to be NED! Praying that continues.
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- July 25, 2019 at 3:41 pm
Hey Ed, thanks for the info. I’ll take a look.
With regards to my medical team, I understand what you mean about seeing a melanoma expert for sure. Dr. Gillespie Twardy specializes in medical oncologist and hematology, mainly oncology. And while not a majority of her patients are melanoma patients, she does have a significant number of melanoma patients. Having said that, I certainly would prefer a doc who deals only with melanoma but I have to travel a distance to see one regularly. So I did go see a melanoma specialist at Duke University (Dr. Salamas) back in April for a 2nd opinion. With my situation, she would not treat me with the Targeted Therapy or immunotherapy and said she would only do watch and wait approach worried about my Crohn’s and suggested even those without pre-existing auto immune disorders that most patients have serious side affects including of the gastro tract, that she has at least one patient per week admitted to hospital, and deaths (while few) do happen. But local doc suggested the Targeted Therapy for my BRAF in lieu of immuno since I was BRAF and with my Crohn’s…rather than doing nothing. I didn’t want to just watch and wait either. So tried the therapy. I know if I go back to Dr. Salamas at Duke, because of the side affects to the Targeted Thearpy meds, she’ll still recommend watch and wait and not do immuno unless comes back. So I’m considering going to see Doc at UVA that Celeste suggested to get his opinion on things. -
- July 25, 2019 at 3:20 pm
Edwin, they consider another one medically unnecessary since I just had the one in March (by the way, we had to go through hoops to get that one approve). So they seeking approval for a CT scan scheduled for next week.So you didn’t have any treatment (including immunotherapy) for the Stage 4 diagnosed in 8/2015 until 8 months later in 4/2016?
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- July 22, 2019 at 8:18 pm
Hey Mark,
WLE surgery to remove melanoma, and clear margins. And NED as of PET scan in March. She wanted adjuvant therapy initially because this was my second time with Stage 3 and it being available where it wasn’t before, and my higher risk of it returning because not only of my history, but because this last one was an In-Transit melanoma – so not a skin surface melanoma but it was within the subcutaneous where all the lymph / blood vessels are meaning it is a high chance there may be cells travelling that has not yet clustered together to form anything visible on imaging. This is how it seems this lump of melanoma cells formed….came from the original one 5 years ago.Thanks for your thoughts…it really does help!
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- July 22, 2019 at 2:14 pm
Hey Mark_DC, thanks for your thoughts. What you say makes complete sense. Worst case scenario is the drugs don’t work or I have untolerable side affects and have to stop, right? The melanoma specialist I saw at Duke University said that they have a least one person a week end up in the hospital with severe colitis from immunotherapy and deaths have happened as a result. And because of my Crohn’s, she wouldn’t do either the BRAF Targeted Therapy or immunotherapy on me. I don’t know if she would change her mind now or not with the Crohn’s surgery. The thought process from my Crohn’s doctor and the surgeon was with the surgery (and the temporary stoma) my chances of the Crohn’s developing again was very minimal (based on my late age of Crohn’s onset, age I am at now, removal of the diseased part, and not reconnecting the intestine but doing a temporary stoma instead). They did the stoma to hopefully delay any recurrence of the Crohn’s around the surgically removed part while on immunotherapy and even after. But of course immunotherapy could create other intestinal/digestive issues.
Another thing I am wondering is if because I had the severe side affects on the BRAF Targeted Therapy (Taf/Mek combo) if that means I will likely have a propensity for bad side affects on immunotherapy. I guess if I don’t try, I won’t know. I’ve always been one who just can’t sit back and do nothing (that is on anything). But I tell you what, I went through heck on that other medication. But I guess dealing with what I had to deal with is better than the alternative, huh?
I’m curious about your situation, only if you care to share?
Best wishes! -
- July 22, 2019 at 1:54 pm
HI Double TT, sounds like you’ve been through it. Gotta keep fighting. Glad you won that fight with the insurance company. I just found out insurance denied the PET scan for me that was scheduled for tomorrow that my doc wanted. I just had that one PET in March, so I wasn’t holding my breath that they would approve again so soon. We actually had to fight for many weeks to get that one in March approved after a denial.
So how have you done on the immunotherapy as far as side affects are concerned? Also, I’m curious about your strict diet. What is that like?
I’m sure you counting down those 2 remaining months for the Nivo – wishing you the best! -
- February 7, 2019 at 5:44 pm
Dear Anonymous,
Continued prayers for your situation. Keep us posted on how things are going and results of the scan next week. I don't know how the VA operates, but keep pressing forward. Ask tons of questions. Become informed. As I am working on myself. My MRI for the Crohn's identified my tumor as not a pillar cyst and needed to be biopsied due to my melanoma history. Not for that, who knows how long this thing would have been on me, wreaking even more devastation on my body that I know it already has…even though I feel well.
Hang in there and let us know how things go next week.
Beverly
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- February 7, 2019 at 5:39 pm
Hi Bubbles (Celeste),
I inadvertently replied as Anonymous yesterday. Glad you pointed that out. I'm Beverly.
Thanks so much for the links to those articles. I skimmed over the first one and will read in more detail this afternoon. Looks to be very helpful.
I read over your profile info – you are quite the fighter and an inspiration. I know more questions will come. I still have tons of unanswered questions as I am still waiting to hear back on the consensus from the experts on my path reports and slides (past and present), of course the upcoming WLE and SLN biopsy procedure on the 22nd. Would be waiting on results of PT CT scan scheduled for this morning except I found out yesterday at 5:30 pm from the hospital that my insurance denied approving the scan. They say they hope to do the peer to peer today (Doc was in surgery yesterday afternoon) but I can't imagine why a denial (money driven I'm sure) based on what my path report says and history of past melanoma. I don't know what information gets sent initially to the insurance company when asking for authorization? Do they send the path report? Medical history? Or what when asking for approval?
I need to seek out a local advocate to help me navigate all of this (if there is one locally). But I do know after looking through this website and the forum that there is a wealth of information and knowledge that will be so helpful. So many amazing and uplifting stories as well. Just trying to weed through everything, different experiences and results, etc. is quite overwhelming. If I could just get my scan done and results and get the surgery so I can get some answers, that will clear some of the muddy waters. Without a miracle, my research shows that with the depth of my melanoma (and other details) there has to be spread somewhere.
Further, I am so frustrated because I brought to the attention of my dermatologist this lump when I first noticed August 2018 by the scar from my Jan 2014 melanoma WLE surgery. She assured me it was a pillar cyst and absolutely nothing to worry about. I should have insisted it be cut out then. But I was assured it was a typical pillar cyst. I didn't have enough knowledge back then to realize that it could be a real problem. The Derm should have known. If I had not had the MRI from my Crohn's in December 2018, it likely would still be there. I got my medical records from the Derm from last year and this year and it apparently doubled in size (width), even though id didn't appear it had upon the naked eye.
Seems like things move at a snails pace…meanwhile cancer doesn't wait on anything.
Thanks again! And so happy you are in a good place with all of this! Praying for continued blessings.
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