bjeans

Mike – drugs for this week! Doesn’t have to be adavan.

And there is help available – even for claustrophobia. Sometimes we try to ignore terror or face it, but it catches us so we bolt – I have done this, not for claustrophobia but for another phobia. 

But instead of trying to break through the wall of terror we can go around it. There are skills that can be learned – through self-hypnosis and other techniques, that practitioners who deal with phobias can help with. Asking for help in order to get the medical treatments we need is scary and brave too. But the outcome can be worth it. Just my take. YMMV. 

Hang in there and think of everyone who’s got your back. 

Beth the Wife

Side effects can be cumulative and/or delayed. But terrific you completed the study – congrats! My husband just completed #13 which was probably nivo/ipi and gut side effects are just re-starting – third time.

May I ask what medicine the doctor prescribed in your MedPak – prednisone? And what dosage?

Beth the Wife

Mike! You have nothing to be ashamed of, no reason to apologize, and I just wish I could wave a magic wand and get you through it. In fact if you PM my your address I promise to send you one.

I was at the eye doctor’s today making sure one of my retinas wanted to stay put, and was apologizing for being nervous about getting my eyes messed with. The office manager told me how some patients have passed out getting their eyes dilated. They’ve even had to call an ambulance when a patient didn’t wake back up right away. 

So like Celeste said, people have their stuff! I certainly do about some medical procedures that are a walk in the park with rainbows and kittens compared to what you and others here go through. Or as my husband has said about his treatment, better him than me. 

The only thing I’d add is that once I needed a surgery and was going to cancel due to sheer terror, especially of the prep – like trying to find a vein (always awful), being put to sleep, etc. So I visited a hypnotist. He said that as suggestible as I was in a bad way, working myself up into a spinning, frenzied fear machine, I most likely could be as suggestible in a good way – flip side of the same coin. He was right; we had two sessions and I was taught how to give myself certain suggestions with (in my case) a visual component. It was astonishingly helpful and I do it when thinking – or reading – about something makes me anxious.

 Of course the fear and anxiety still hits. But now there’s a way to lower it to a manageable scale. 

This isn’t necessarily the answer for everyone; YMMV. 

Beth

Yes, aye aye, Captain Mike! Scary but worth some rough seas to end up with sunny smooth sailing soon. 

Beth

First let me get out of the way that I cried when reading your post. When I see your “27” in a list of commenters I know your post will be an informative and often upbeat read. 

And now I have to respectfully disagree. You have dealt with it. Mightily. Compartmentalizing is a valuable skill and tool. Granted, it isn’t the only tool, and sometimes it can be helpful to shift gears, but don’t discount your ability and the reasonableness of how you’ve used that tool, given your life, which would be considered stuffed to the brim even without cancer.

I’m just the wife, so take what I say with a grain or box of salt, but if your medical center has a counseling and/or group program for cancer patients/family/friends, and if you can carve out a little solo time, why not look into it? At my husband’s center, there’s individual counseling, art therapy, movement therapy, meditation, exercise programs, discussion groups, more.

I attended one session of a monthly art therapy group for patients/friends/family. Everyone else was a patient, and some of the women talking to me before/after said it was a highlight of their month for diverse reasons: camaraderie, surprisingly figuring something out, unblocking emotions, laughter, peacefulness. A meditation and check-in was first done, and at the end participants who wanted to talked about their project. 

Getting in touch more – whether though that kind of program or individual counseling – might be something to explore. It can’t hurt, and might provide another tool for you.

Just my take; YMMV. 

Beth

Welcome to the Forum, Mortal! 

I’d add that if you need a melanoma specialist, it’s just that you don’t want a general dermatologist or general oncologist. You want docs who spend most of their time on melanoma, a primary focus. If it’s less than 100% because they treat another serious type of skin cancer that’s okay.

It’s 2018, not 2008, and as an expert here has written, there’s been time for docs to get up to speed on best treatments, so it’s a little less of a needle-in-a-haystack search, at least in some parts of the U.S.

How the process went for us, which may be somewhat typical, was that my husband saw a general dermatologist, who had a plastic surgeon remove a large, suspicious looking mole (aka the scary Halloween mole). When diagnosed as melanoma, the dermatologist provided three places for the next step, which he assumed would be a WLE and SLNB. (It was.)

We decided which one by asking which he’d choose if it was for him or his wife. By then I’d googled a bit and the director’s name had popped up more than once. 

Sometimes choices get confusing and the pros here (not me!) can help you sort out options and questions to ask. But often treatment can be fairly straight forward. We’d thought we’d travel to get a second opinion, but after finding this forum and reading some of Celeste’s (Bubbles’) primer emailing, saved ourselves a trip and time, because the treatment recommended was clearly what was called for. 

It takes some time to get the new lingo and alphabet soup under your belt and develop your sea legs. 

Wishing you the best, and let us know how it goes. 

Beth

 

 

Hi Bill – so glad you checked back in and are doing better. No pumpkin spice Opdivo with a side order of Ipi at my husband’s center, but the institution it’s part offers autumnal acupuncture, which he’s doing for some help with a gut issue. The NIH notes a bunch of side effects it can help with, and it can’t hurt, plus our insurance covers it. (And it worked wonders for our dog’s hurt shoulder.)

Beth

My husband is in a blinded study: bi-weekly nivo and possibly/probably a 1/3 dose ipi every third infusion. No side effects after infusions – he goes to work.

Three months in he developed colitis/diarrhea. He otherwise felt fine, though logistically it was difficult. (Can I get to a bathroom in a 10-second dash?) Lomotil and then prednisone were prescribed, and two infusions delayed. Travel would have been out of the question.

After another couple months it recurred. Lomotil and prednisone were prescribed earlier, one infusion delayed and it resolved quickly. But the guess is that the culprit is ipi.

The only other side effect was just once mid-way between infusions. He became dizzy. The oncologist wondered if it could be dehydration and I drove him to the center. He was given i.v. fluids, was fine and now drinks more water.

Side note on side effects – the medical center (not melanoma center) has a traditional Chinese medicine center, and he began acupuncture sessions. One colitis symptom (blood) stopped after the first or second session, just before going back on prednisone. (We wish he had begun sessions earlier.) NIH has articles about its use for fatigue from treatments and for other conditions, and our insurance covers it. 

And maybe make a reservation at a hotel that allows same-day cancelations? Just the adrenaline spike and first-time process could be draining, let alone a side effect. Driving is relaxing for both my husband and me, and dealing with hotels far more tiring, but that’s personal preference.

Good going on fitting into a study, and let us know how it goes.

Beth

Hi Melissa – You received responses on your other threads that also might be helpful, but maybe you hadn’t seen them. (I realize it can be a little difficult at first to find previous threads – you can select your own name to find other posts your wrote, or select an earlier page number – your other threads were one page back.)

Here’s the thread with the other photo:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa…

Waiting is tough; hang in there.

(And I first posted this accidentally on one of your other threads – so I can get mixed up too!)

Hi Melissa – You received responses on your other threads that also might be helpful, but maybe you hadn’t seen them. (I realize it can be a little difficult at first to find previous threads – you can select your own name to find other posts your wrote, or select an earlier page number – your other threads were one page back.)

Here’s the thread with the other photo: 

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/melanoma-6

Waiting is tough; hang in there. 

 

 

I'd love the dog and definitely vote NED for my husband and everyone out there!

Thank you!

Beth

Hang in there, Stephanie – like Mike said, it could be nothing. And if it’s something, hang out here, because there’s lots of outdated and nutsy information out there. 

Let us know how it turns out – 

Beth (the wife)

Beany, sorry – the link to the Hopkins video, above, was meant for you.

Edwin, you might want to watch this Johns Hopkins video where the docto answers just that question (good news).. If the link doesn’t work, you can search on youtube for “Managing Immunotherapy Side Effects” by Evan J. Lipson.. https://m.youtube.com/watch?v=2MAmESB4czA

Beth

Just another vote for acupuncture. It seemed to stop one symptom of colitis for my husband (though his doc wanted him on prednisone quickly so we couldn’t wait to see if other symptoms cleared up), and after trying several treatments for our dog’s hurt shoulder, including physical therapy, after one acupuncture session she jumped up on a favorite bench she hadn’t attempted in months. I hope mentioning our dog doesn’t seem flippant; that it works on a dog or cat eliminates the possibility of a placebo effect.

The NIH has studies that point to it helping for some conditions, and you never know until you try. It doesn’t hurt and some insurance plans cover it. Ours does – Cigna, though of course it depends on what the employer has selected/negotiated.