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Recent Dx

Recent Dx

Posted By
Michael2.0
10/16/2019 11:24pm
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Replies: 16

Hello everyone,
I've been lurking here for a week or so and have finally got the nerve to post. Weird how little things like this just affirm what you already know, yet they are still difficult to admit to and process. I was dx with stage IIIB malignant melanoma in late Aug. I had the primary site excised (rt. calf) and had three lymph nodes removed from my inguinal area. One showed microscopic amounts of cancer. That and the ulceration of my primary tumor set me at stage IIIb.
The following week I received a skin graft for my leg and did a PET Scan and brain MRI. Thank God both were negative. Last Thurs I began Keytruda as an adjuvant therapy.
This has been a very difficult month or so but I feel good. Ive lost 18lbs and have cut all sugar and processed food from my diet.
I feel kind of lost honestly. This waiting game for recurrence seems like it is going to be excruciating.
Anyway I do derive comfort from listening to the success stories and hope beyond hope someday I might have a success story of my own. If any of my experience can help others then feel free to ask.

Aloha,
Michael

Aloha, Michael

Bobman - (10/17/2019 - 3:52am)

Aloha Michael!
Welcome to the club no one wanted to join, but rest assured you have found the best group of people, with the best information available on fighting this disease. Everyone here definitely understands what you're going through, and you can get all the latest, greatest and best researched information possible...right here. I assume you're in Hawaii? I'm on the big island currently, awaiting travel and surgery on Oahu at Queens for my 12th primary. Sounds like you're getting what you need at the moment, and I would be curious to know what doctors, and hospitals you are working with, as navigating care for melanoma on this island is challenging, to say the least.
Don't hesitate to ask about anything around here. You will get answers from those that really know what they're talking about.
Best of luck,
Aloha,
Bob

We are one.

Michael2.0 - (10/17/2019 - 4:34am)

Hey Bob!
Thank you for the reply! Yes I am on Molokai and also get my treatment at Queens. The inter-island travel is a bear to deal with sometimes as Im sure you know. My Oncologist is Dr. Melvin Palalay at POB 2. He seems to me a great doctor. I'm very happy with my care. (less happy I need this type of care)
When you say you are waiting for surgery for your 12th primary, does that mean you have had 11 prior surgeries? Please forgive my ignorance as I am kind of new to this even though I have been an xray tech for 25 years.
Where are you on the Big Isle? I lived there for 15 years prior to Molokai and sold my Kapaau house in 2018.
Again thank you for your reply and anything you could share about your treatment would be of great interest to me.
Aloha!

Aloha,
Michael

Bobman - (10/17/2019 - 6:30am)

Hey Michael, small world. I had Dr.Palalay as my oncologist until about a year and a half ago. I got frustrated with lack of follow up, and not being able to move forward in any way with him. The front desk was impossible to deal with for scheduling, and it's my theory that since I was, and still in a staging limbo, he didn't feel he had much to offer me. I am glad he's working good for you, and I knew a woman here who also saw him, and was very happy with her experience with him.
Yes, I'm heading to my 12th wide excision and soon as my referral and travel are completed. Hopefully I'll get the latest tumor, which is on my ear resolved by next week.
I'm in Puna, out in the acres near Pahoa. My treatments have all been wide excision so far. I've only been offered interferon other than the knife, and that has been obsolete for melanoma for a long time already. I am in staging limbo, which has gone on for years. No one I deal with really believes I'm stage 1, but won't offer anything until mets shows up. It's a weird place to be in honestly.
Stay in touch Michael, and I'm sure we can cross paths eventually. I'm hoping to be in surgery by next week...but it's Hawaii yeah.
Aloha brother,
Bob

We are one.

Bobman - (10/17/2019 - 6:52am)

Oh and just a helpful navigating tool on this site. You can click on any name and read all previous posts, and history from the members here. Also , it will be helpful to fill out a profile for our most helpful people to be able to give you precise information for exactly what you're dealing with. Everything I've learned of value about melanoma, I've learned here.
Bob

We are one.

Michael2.0 - (10/17/2019 - 8:06am)

Hey Bob,
I got home from work and read your posting hx. Sounds like its been an incredibly difficult situation to be in. Sorry man.
It's like a catch 22....if you dont have stage III, they cant seem to do anything besides surgery. If you are stage III then therapies are available but...you have a more dire prognosis.
I have only been at this a short time but I can see how it can beat you down. I have been to Honolulu so many times. The last two times my flight arrived at 7-8am and I flew back at 6-7pm because those were the only flights available. I spent 2 hours at appointments. Getting to know the downtown Honolulu area quite well as I wander around waiting for my flight.
I wish you luck next week. Let us know how it went. Yes, it seems likely our paths will cross. Lets keep in touch and Im sure we'll both be at Queens at the same time eventually. The Gathering Place :)
Aloha!

Aloha,
Michael

Bobman - (10/17/2019 - 3:52am)

Aloha Michael!
Welcome to the club no one wanted to join, but rest assured you have found the best group of people, with the best information available on fighting this disease. Everyone here definitely understands what you're going through, and you can get all the latest, greatest and best researched information possible...right here. I assume you're in Hawaii? I'm on the big island currently, awaiting travel and surgery on Oahu at Queens for my 12th primary. Sounds like you're getting what you need at the moment, and I would be curious to know what doctors, and hospitals you are working with, as navigating care for melanoma on this island is challenging, to say the least.
Don't hesitate to ask about anything around here. You will get answers from those that really know what they're talking about.
Best of luck,
Aloha,
Bob

We are one.

Linny - (10/17/2019 - 8:54am)

Good morning, Michael!

Fellow IIIB survivor here. Next month will be 9 years since my diagnosis.

As of this moment you have no signs of cancer, so it's safe to use the "R" word: remission. I used to be a basket case at all my early visits to the oncologist. Finally, at one around the 4-5 month point he told me I was in remission now and that it was his job to see to it that I stayed that way and that it was my job to get back to living. At first I looked at him incredulously thinking how can this be, I have cancer. But, his words and advice made sense to me. I hope they will to you, as well.

You have a great weapon at your disposal with Keytruda! I wish it had been around when I was diagnosed. My options 9 years ago were observation, Interferon, or clinical trial. You have a second weapon at your disposal, too. That second weapon is your own vigilance.

Getting a cancer diagnosis means getting a change in routine and change is always a bit scary. What's the change? Well, it's your treatments, scan schedule, and doctor follow-ups. During the first two years you will be monitored very closely and getting to know your doctors very well. These visits will decrease over the course of time. Statistically, the highest odds of recurrence are within the first two years of diagnosis, hence the more frequent followups and scans. Also, the longer you go without a recurrence the odds of actually having a recurrence decrease. As far as the stress goes, it also decreases. Really, it does!

There are a LOT of stage III survivors out there. You just don't hear from them very often here because once the initial scare passes, they begin living their lives again. It really does happen. It will for you, too.

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

Threefitty - (10/17/2019 - 10:46am)

"There are a LOT of stage III survivors out there. You just don't hear from them very often here because once the initial scare passes, they begin living their lives again. It really does happen. It will for you, too."

Great comment. Also a 3B here, also an "ulci" (we really need a cute name for ulcerations) now with 25% fewer nodes! (back/axillary)

I would just add that for me there has been a longish phase after "initial scare" and before "going back to living life again". I am now 2.5 post Dx, probably this whole phase will seem like a blip in 5 years. (knocks wood)

But I would not underestimate the (lesser than S4, of course) substantial emotional toll of 3B. Not long ago, that could be neatly summed up as "coin toss to make 5 years, half of those gone in half that time". If that doesn't make you re-think life, either congratulations on already figuring life out, or you are truly hopeless.

Immunotherepy gives you a second coin toss. Maybe better. That alone turns a very dim outlook into one you really must invest your optimism in. Eventually.

Part of me (anyway) is reluctant to let go entirely of that dim outlook because 1) it's an aspect of ongoing mental preparedness for bad news and 2) it is connected to that peculiar richness of life under the scythe. Urgency feels good still.

Like most big traumas, only passage of time gives the mind the distance to think less about the existential issues this Dx presents. That's how this feels at 2.5 yrs.

Each part of the ride has had ups and downs. It is never over. But one day you start actively finding ways to talk about yourself to others without mentioning cancer, because it is exhausting, repetitive and mostly of diminishing relevance to your life.

That's when you come back here not for the recent science, once so obsessively consumed, but just to get your fix of melanoma comradary.

Ahhh. Now that's the good stuff.

Best of luck.

Michael2.0 - (10/17/2019 - 5:04pm)

"Part of me (anyway) is reluctant to let go entirely of that dim outlook because 1) it's an aspect of ongoing mental preparedness for bad news and 2) it is connected to that peculiar richness of life under the scythe. Urgency feels good still."

It is strange to find comfort in not letting go of that urgent feeling. The first couple of weeks after dx were really hard. My whole life turned upside down. How to tell my 21 yo daughter who is away at college without throwing her world into a tailspin. When it all sunk in I felt I hit rock bottom. I feel if I dont keep up my realism of the situation mentally and all of the potential repercussions that I may have to go through that process again.
For me there have been two parts to this:
1. The medical side. Understanding the disease and learning how to navigate the system. As was mentioned accepting that frequent visits and testing and therapy are now part of your life. For me this has been the easy part.
2. Realizing you are at the center of an emotional storm that is engulfing all of your loved ones. That I am the cause of a lot of pain. That doesnt feel good. So you put on this armor suit for their benefit to show them everything will be ok even though inside that is probably the exact opposite of how you feel. Im not afraid of dying as much as I am leaving my daughter without a Dad or putting my family and friends through the ordeal of watching me suffer.
But....there have been lots of good things too. Truly realizing that people love and care about you and that you are valued and would be missed. Realizing the blessing that another day above ground is.
Thats the meaning behind my moniker Michael2.0. In two short months I have become a different person and the 2.0 version is frankly a much better person than the first version.
I work as a CT/Xray tech and just made it back to work this week. YAY! Last night I started my shift and an elderly gentleman was finishing his scan which was a chest abdomen pelvis to monitor his cancer. I asked the other tech if she needed help and introduced myself to the patient. We shook hands and he squeezed my hand and didnt let go. So I squeezed his hand back and had a short conversation and I wished him luck. Afterwards I found he had lost his wife and was alone on this visit. He just needed a little human contact and for the first time in my 27 year career I truly understood the power of my role in health care....like, truly understood it. Melanoma gave me that. Crazy.

Aloha,
Michael

Michael2.0 - (10/17/2019 - 4:20pm)

Thank you so much for your reply!
I imagine all of us go through this initial stage of seeking information and people in a similar situation to hopefully find good news and some comfort. I searched and searched and found tons of vague and confusing statistics that often raised more questions than were answered. I just want to say how comforting it is to find a group of people that find themselves in identical or similar situations.
I am past the initial "freak out" stage and now have my rationality back to where I think I can process the informational load of a cancer diagnosis. Aside from all of the B-cells and T-cells and monoclonal antibodies there is hope. Real hope. I appreciate you sharing that with me. I'm not sure i'm quite to the point getting back to living (as I was before) but now that it is in my brain I will try.
Again...thank you for the reply and the hope!

Aloha,
Michael

Linny - (10/18/2019 - 9:23am)

I'm so glad you mentioned statistics! It's not easy to provide accurate statistics on melanoma these days because treatments are evolving at lightning speed. Most of the statistics you will find are out of date, even for those articles as recent as 2014. Research articles don't freak me out as much as they used to because I remind myself that whatever survival stats are listed are better now than they were at the publication date.

As you pointed out, these days there is real hope. Less than 10 years ago the outlook was grim in that there wasn't much out there treatment-wise for melanoma and if these treatments worked al all it was for a small percentage of patients. For Stage IV, there was Interleukin and for Stage III there was Interferon. Side effects were harsh. It wasn't until 2011 when Ipilimumab (Yervoy) became available that there was a glimmer of hope.

Bubbles (Celeste) has a great blog where she talks about the latest adjuvant treatments for Stage III. Unfortunately I don't have the link, but she normally checks in quite frequently to reply to posts.

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

Lucygoose - (10/17/2019 - 1:27pm)

I am 3B as well. I was on combination therapy before surgery. My melanoma was discovered not by a skin lesion but by an enlarged lymph node. They never found a primary melanoma site on my skin. The pathology of the removed lymph nodes showed all of the cancer was gone and only scar tissue remained! After surgery my first set of scans were NED. I did end up with adrenal insufficiency and hypothyroidism from the combination therapy. But I’ll take that as opposed to stage III cancer. I am currently on monthly infusions of Opdivo. With the exception of short breaks for mild side effects from the Opdivo I am getting on with my life. You will be able to do this too.
Prayers and best wishes for you.

Lucy

Michael2.0 - (10/17/2019 - 5:07pm)

Thanks to everyone for the responses, encouragement and hope!

Aloha,
Michael

Linny - (10/18/2019 - 9:25am)

So glad to see you're doing well, Lucy!

Stage IIIB, Unknown Primary; 1 positive node in left axilla. Diagnosed December 2010.

SOLE - (10/18/2019 - 9:14pm)

Hey,

3 years ago now, I was thought to be 3b as well. Initial pathology couldn’t find a definitive depth because the biopsy had positive margins. Total limbo. No other adjuvant possibilities but interferon because in Canada, it was impossible to bear although I made it this far out with a pT3b lesion... Everyone is different but now 37 months out, I am starting to live again. You will too. Thanks to the peeps here.

Michael2.0 - (10/19/2019 - 4:27am)

Hey Sole,
Thank you for sharing and for the encouragement and support. I hope your journey continues to be so successful.

Aloha,
Michael