cancersnewnormal

I would definitely see another derm who you’re more comfortable with. Trust is huge. Having had a melanoma in situ (no matter how far back into your history), she really should be more careful to excise the entire mole in question. My derm has a rule that if it doesn’t fit the circumference of the punch in its entirety, we wedge resect. The fact that it came back as benign is good news, however, I would certainly keep an eye for any return of pigment. For NOW, there probably isn’t much that needs to be done….. assuming the punch that was done covered MOST of the mole in question, and wasn’t just a sampler of the center.

Quick glance at your pathology looks like you’re stage II b. Is that accurate? —– Stage IIB

Tumor is 2.01 – 4.0mm thick, with ulceration
OR
Tumor is greater than 4.0mm thick, with no ulceration
No spread to nearby lymph nodes
No evidence of metastasis to distant sites

IF so, you’d be looking at a clinical trial in order to get any adjuvant immunotherapy post WLE & SNB. Unfortunately, we’re typically at the mercy of “standard of care”, and any potential “lumps or bumps” noted in your CT last year are considered “incidental findings” until growth or spread. You could certainly ask for another CT for baseline… you could even ask for a PET… but if you’re in the states, your insurance company is proooobably going to push back on the PET as an expense. The CT might be agreed to. While it’s absolutely terrifying to learn that you have melanoma, and to read how similar your story is to another patient who progressed, please try to keep in mind that there are many others who did not progress from whom we don’t hear anything… because… well… they’ve no reason to seek further advice.

THAT said… I’m of the nature to push every envelope and button that I can, until I’m told no more than once. 😉 Sooooooo…. it can’t hurt to ask the doc. Just try to keep in mind that you may have to live with some uncertainty, which is one of the most difficult things about a diagnosis.

After being diagnosed stage 1a in July 2007, I was not as diligent, nor educated and cautious as you. By the time April 2013 rolled around, and I unexpectedly went down with a seizure (brain mets… welcome to stage iv), I went into my first craniotomy with a deep rich farmers tan. **yikes** THESE DAYS… I try my very best to get out by 6 am and be finished by 8 or 9. I’ve always got sunscreen on to start, and carry a travel pack (Zealios makes some great ones) in my pocket for re-application every 90 minutes. When I run or ride, I use “sun sleeves” that are spf 50, or a long sleeve jersey with sunscreen underneath. If you get hot with the spf sleeves, you can get them wet. It’s actually really nice! Now that I’ve kicked up the run training for an upcoming 1/2 marathon, I have found that I’m developing a sliiiiiight tan line on my legs (always have on sleeves and a hat), because I can’t stand running in leggings. At my last dermatology appointment, I pointed out the farmers line coming in. My derm asked if I was running as early in the day as possible (yes, and with the special bonus of thick fog in our area!) and if I was wearing spf 45-50. I am. He said it’s not ideal, but the reason for my color coming in is better than the alternative of being “pasty white on the couch”. Sooooooo…. he and I both know to be extra diligent with skin checks (I check everytime I apply sunscreen), because there is NO CHANCE this caged squirrel is going to be able to remain indoors. Keep up the exercise and do your very best to take precautions… but don’t be overly paranoid to the point that you’re no longer living! :-p

Each patient will vary, and doctors really STILL don’t have any concrete ideas on when a patient can/should stop receiving immunotherapy infusions. If his disease is “stable” but not growing, the PET uptake may be a good indicator as to whether he should continue on Nivo or try stopping. A traditional CT will show size and location, but not metabolic activity, so it is difficult to determine whether or not one is looking at scar tissue or active metastasis. For me, the decision to stop was fairly clean cut, as pancreatitis set in, and I had no visible metastasis (other than some stable scar tissue in the brain). Keytruda had cleared mets from my scans, so we knew it was the drug that did the work. I was on it for 20 months from Nov 2014 to July 2016 and have remained clear since stopping. A close friend of mine who was on it from May 2014 (in trial) to May 2016 had a recurrence in his brain in October 2017. After gamma knife to the lesion, he was put back on 6 months of “maintenance doses” and now is again remaining clear.

The decision to stop or continue is so individualized. Unfortunately there aren’t any solid answers we can turn to.

I see no reason why monotherapy with either Nivo or Keytruda wouldn’t be an option. While the combo does have a better response rate, as you mentioned, the side effect profile is also higher. Not knowing his full history and what you mean by him having a 4 year response to Ipi, its a little more difficult to ponder what the oncologist might be reasoning. Did Ken have detectable disease on imaging that the Yervoy “cleaned up”? Or did he take it as an adjuvant therapy? I ask, because if he had no detectable disease, but took Ipi in the “preventative” adjuvant setting… then it may not actually have done anything at all for him. He may simply not have recurred until now. If it visibly shrank (or made disappear) lesions that remained in his body, and cleared him for 4 years, then his melanoma may have found a work around, or his body may just need a “booster” of the Yervoy. Additionally… if the surgeon removes the lymph node, leaving him with no other detectable lesions… I’d personally be concerned about taking the combo versus trying Nivo or Keytruda as a solo adjuvant agent. As you mentioned, with progression on a solo anti-pd1, the Yervoy could always be approved as an addition. I’m typically very aggressive in nature when it comes to attacking back, however, I’m also of the belief “Why try to drink from the fire hose, if drinking from the garden hose will quench your thirst?”

First of all, whomever the doc is that got you on a routine annual chest x-ray should be given a huge pat on the back. Whether or not it is melanoma metastasis, that’s a good follow up protocol! IF this is indeed melanoma, that’s a nice early catch (yes, even at stage IV, an early catch is better than a late one!). It could be a benign nodule. It is possible. I had a nurse friend who thought for certain that she was facing metastatic breast cancer, until her biopsy showed it was a fungus in her lungs. Weird things happen. That said, it could very well be a return of the melanoma. Mine was 1a when removed from my shoulder in July 2007. Five years and 9 months later, it was stage IV. Three lesions in my lungs… 5 cm, 2 cm, and 1.2 cm. Five lesions in my brain… largest at 1.4 cm caused a seizure, leading to the discovery of stage IV. Apparently my primary care doc doing skin checks every 6 months did nothing to stop or sufficiently monitor the spread. Go figure. Had I been getting annual chest x-rays… we may have found things a lot sooner.

You’re now in the unenviable position of “biopsy then wait for results”. It’s probably going to be the longest stretch of 7-14 days you’ve encountered in quite some time. Fingers crossed that it’s something less ominous than melanoma, and you can be back on track with annual check ups! However… IF… IF IF it is melanoma… ask about possible BRAF testing status, and perhaps a brain MRI and full body PET/CT are in order as well. If the biopsy comes back as melanoma, AND its a single lesion with the rest of you coming back clear on scans, you’ll have a few options……. but putting the cart too far in front of the horse is only going to have you more on edge and stressed while awaiting test results. For now, try your best to distract with “regular life” stuff.

Thanks for the latest update and breakdown Celeste! This Friday marks 3 years out since my last Keytruda infusion. Although I didn’t have Ipi in combo with it, I did have all 4 rounds of Ipi in 2013, followed by the Keytruda from late 2014-2016. There were a whooooooole lotta brain lesions that cropped up during the “in-between” of the two immuno drugs. I had/have some fabulous docs who got innovative with ideas and care. As you mentioned, I’m not sure I like the numbers for efficacy of the combo alone for intercranial treatment. I’d still book a run through gamma again. But then, I’m not much of a “let’s wait and see” kind of person. ;-p

Ahhhhh Lily of the Valley. I'm not one to know floral names, but that one is my favorite. Seemingly dainty, yet quite hardy and reliable. Tack on that it does best in the shade… hmmmm… there may be more to the attraction than I thought. LOL! Thanks for sharing your garden tour! BTW… now I want to paint my shutters and front door that gorgeous shade of blue! 🙂

Whoa… so weird, I was just thinking about Leland yesterday, while I was out for a run! In 2013, I was deserately in need of some positive stories to hang onto. Leland and TJ Sharpe were my "hope warriors"…. along with John Murphy (for those looking for names of survivors still kicking the can down the road years later). Super happy to note that all three gents are still doing well at this time! Thanks for the post, which reminded me to go take a peek into "the life of Leland" again! I wonder how his boys are doing with hockey…. 🙂

Happy to hear you're still doing well all free and clear! Also happy to see you popping back in to share upbeat news, and share where you can, now that you've been "in the game" awhile! Your "rookie" status is officially revoked. 😉 

I'd be wanting to see the path report for depth… and his remark about "eyeballing it" is a pretty flippant way to respond to a patient question. I've had some reasonably good size chunks taken out of me in a doctor's office with only local injections to the surgical area. What size the lesion is, and its location would be questions in my book. Also… when the doc starts digging, if they find it is wider or deeper than expected, what is the procedure and/or accessibliity to some nitrous oxide, propofol, or (at the very least) some Ativan!

Sunscreen prices make me insane. I wish i had a good tip on wholesale batches. Unfortunately, in the long run, it may be less expensive to look into some UV protective clothing for you and your husband. They do make it for kids too… but with them still growing, you'll be going through stuff faster than it can be worn out. That said, it might be easier to get them to wear the protective sleeves and clothing than it is to get them to reapply sunscreen as regularly as is needed. Personally, I'd like to see my insurance company cost share on sunscreen for me, as they would any of the prescription drugs I need. "Medically diagnosed melanoma patient with a doctors prescription? $10 copay… here's your jug of spf 50."

100% agree with Ed’s advice. My family doc was coming up with reasons not to give me a referral for my first craniotomy back in 2013 when this whole mess hit. We had my neurosurgeon from USC call him and change his mind. My dermatologist has given us the same advice regarding anything our son might need. He said there are different paths that doctors can take to “push” the buttons necessary. Discuss it with Hamid’s office and anyone you might have as the “nurse case worker” who is supposed to be handling you via Kaiser’s system. Do they want a potential lawsuit on their hands? I think no. Be that loud squeaky pain in the ass. Get into people’s faces… literally… in their face until they make a call or process your paperwork. It’s easy for someone to ignore a person when they don’t have to look them in the eyes everyday.

OMG….. I just spewed coffee out my nose! HA HA HA HA HA! This is awesome. 🙂 —- ""Effective in treating asthma, hangnails, ADHD, psoriasis, releasing gas in public, cancer…." it  is clearly a scam.  Meaning, when the list of "cures" is as long as your arm – the truth in the advertising is very short."

It could be the speed walking, but I'm no doc, so there's no way I could say for sure. I was surprised how little it took to do so much damage on mine. It was a tad sore while I was out for the run (which was only 3.5 miles)… but nothing that had me slowed or limping. To look at the toenail now, it looks like it was run over by a car. HA! Still no pain… but the going on 2 months and still looking horrifying… I'm just hoping I didn't damage the nail matrix. Damned "old people" feet (i just turned 50 in late Nov)! LOL! Bite the bullet… see a doc…. because IF… and that is indeed an IF… if it is more sinister than a bruise, an early catch is going to be WAY less expensive than treating any potential metastasis moving forward.