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TeeTaa

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Hello all -

At about the time that TBone was getting very sick (in July), we found out that my 83 year-old father-in-law had been diagnosed with a very rare, very aggressive skin cancer called Merkel cell carcinoma, which acts very similarly to melanoma by attacking organs including lung, brain, etc. Its rate of recurrence is very high, and since it's so rare they don't even know what to treat it with when they find it.

Anyway, back in mid-July they went in and excised a larger area around the original skin lesion and took out the first four lymph nodes into which that area drained (they did a dye treatment to determine where the area drained). We found out on July 30th, the day TBone died, that all those lymph nodes tested negative, so we thought it'd been caught before it had spread. The doctors still were recommending radiation and possibly chemo, just because of the high recurrence rate.

TBone had been very concerned about my FIL, and while he was still able had done a lot of research about this particular type of cancer. I was so glad to be able to tell him, only a few hours before he died, that the lymph node biopsies were clear.

Well, things have taken a downward turn tonight . . . a suspicious lymph node showed up on my FIL's CT scan last week, and we just found out that it is indeed malignant. At this point, we don't really know what to expect, as he's meeting with another surgeon on Monday and they'll probably schedule a more invasive surgery very quickly.

If any of you know anything about Merkel cell carninoma, please let me know. I've done a good bit of research on it on the internet, and it's not pretty. But I'd really like to hear some real-life stories if y'all know of any.

We'd already tentatively planned to visit the in-laws (in southern Missouri) over the Labor Day weekend, and this has certainly solidified those plans. Please keep my FIL, Jack, in your thoughts and prayers.

I HATE THIS DARN DISEASE!!

Praying for us all,

TeeTaa

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Sorry to hear about this Teetaa,

Yes, I'm with you, I "HATE THIS DISEASE" too!! Today' while as I was doing my grocery shopping' I was raging at it inside. Got myself into a real state! That's not much use is it! Oh Well!

Prayers and positive thought on the way to your Father -In- Law and the family.

Paddy

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Oh, TeeTaa--

Not again!!!

I am afraid that I know less than nothing about this disease--but I am hoping that you able to get some sage advice from others. I know people who have had skin cancer--I'll ask round to see if they had the same type and, if so, if they'd be willing to talk to you.

I'm am glad you are going to see your in-laws over Labor Day; how is your husband holding up? Does he have siblings? Do they live near his parents, by any chance? How are your children? They must be rather scared of the "c" word by now...

Your side of your family has been in our thoughts and prayers for months--I'm adding your husband's side pronto.

Please keep us posted.

Fondly,

Melinda

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Here's the scoop on my husband's family . . . unlike the TBone clan, they're spread out all over the place, and very rarely see each other (I met him in 1992, and there have only been two times when I can remember ALL 17 of us - grandparents, kids, grandkids, and in-laws - being together. Sure is strange to me, cause I'm used to our bunch being together every couple of months or so!) Anyway, there are five adult children, with my husband being in the middle. One's in St. Paul, MN (married, 2 kids), only daughter (single) is in Miami, we're in the Atlanta area, one's in Indianopolis, IN (married, no kids), and one's in Iowa, about an hour from Des Moines (married, 4 kids). So the closest kid is about four hours by car.

There is extended family about an hour away in St. Louis. But my MIL's sister lost her husband a little more than a year ago and is herself battling alzheimers, so their kids are busy taking care of her.

This "spread-out-ness" (yes, I made up that word!) is what's so strange and disconcerting to me. My in-laws are 83 and 77, and live in a retirement community of sorts, which is way out in the country. They are both wise beyond words, but have a tendency to believe whatever any "authority" says - and we all know that "authorities" (i.e. doctors) in the cancer world aren't always quite as informed as they might need to be. So the fact that they don't have an advocate up there with them just drives me crazy!

Here's an example of why it bothers me . . . the doctors originally found this lesion in early May, and when we were there for Memorial Day we learned that the dermatologist thought it might be this kinda rare, aggressive kind. The official diagnosis wasn't made until July 3rd, at which time I learned the name, started doing some research, and found out that treatment should have begun as soon as it was suspected! Well, it took another three weeks before anything was done (dermatologist had a busy schedule, surgeon moved away, had to find another surgeon, etc.). In the meantime, my research led me to a clinical trial being conducted across the country for this particular type of skin cancer, and one of the test sites was in St. Louis. Even though we didn't know the stage at this time, I thought that they should (a) at least get SOME oncologist involved, rather than just dealing with the dermatologist and a surgeon, and (B) perhaps this oncologist participating in the trial would be a good one, cause he'd obviously dealt with this particular type of very rare cancer. When my FIL asked his dermatologist about it, the response was, "Let's not get a doctor who's affiliated with another hospital involved at this point." WHAT THE HECK DIFFERENCE DOES IT MAKE WHERE A DOCTOR PRACTICES IF HE'S AN EXPERT REGARDING YOUR PROBLEM?!?! If it had been me, I'd have run as fast as I could from that close-minded, greedy, (add other adjectives here) doctor right to the office of the oncologist. But not them - they chose not to upset the apple cart, and now here we are. I STILL don't know if there's an oncologist involved or if they're still only dealing with the dermatologist and surgeon. I hate to say, but with things getting so badly with TBone, I just couldn't fight this battle too, and then I really put it on the back burner once we were told those lymph nodes they removed were clear.

So I guess part of my anger is at myself. And yes, I know y'all will all say it shouldn't be, so spare me the speeches. Deep down I know it's not my fault - I'm just furious at this darned dermatologist who played around with this thing since May (most likely BEFORE it spread). Let me get my hands on this guy - I might just string him up with David and Karen's adoption agency wench!! :lol::lol:

Oh well - sorry for the ranting. Last night I was upset, today I'm mad. Reckon what the next few days will bring?! :o

Y'all take care -

Praying for us all,

TeeTaa

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Tee,

First, I am very sorry about your FIL.

I don't even know where to begin. Here are some ramblings.

This dam* disease is horrendous. It strikes when and where it wants to whomever it chooses. It is a sneaky disease and hides under many different guises. In some ways this is a defense of the doctors, but not totally.

I used to think that some smart person would find the cure for cancer. (I also thought some smart person could bring peace to the world). I don't believe that anymore because it is not one disease. But I do think there are many, many fine doctors and researchers that are trying their damnest to find things that help increase survivorship.

But, we also have the doctors who have so much ego or greed that they do not do what is right for the patient. I always remember that the person who came in last in medical school is called doctor.

I went every, yep every, dr. appt and treatment with Earl. I was his advocate and I questioned way too much. Earl was a gentleman and tried never to upset the applecart, so I became the witch. But I wanted only what was best for Earl and I didn't care what doctor or nurse or administrator got their nose out of joint.

Okay, I am putting my soap box away for today.

I wish your FIL only good news.

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Katha,

I responded to your e-mail to the family but just wanted to reiterate that I'm here for you and John in whatever capacity you need me.

No speeches, just this: you made Terry's last few months so much better just by being with him and loving him unconditionally. You were his rock and his love for you was so evident whenever those big blue eyes turned to you. I was so worried for you when you first told me about Jack because I felt that you were going get drowned in dealing with both. But you seemed to get a handle on it. In fact, I think I gave you a big sister talk along those lines. Selfishly, I was glad that you were able to segregate the situations and focus on Terry as you and he both needed that. So, don't bash yourself, Little Sister. You've been a saint and have earned a star. (I won't say halo 'cause I know some other stuff you've done through the years.....) :roll:

Love you,

Fran

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Tee Taa,

this is Karen

first of all let me tell you that I had a Stage II melanoma removed last summer right in the middle of dave's treatment. but I'd never heard of this kind of skin cancer. I wish I did. I did a little research when I got diagnosed but don't remember coming acoss this.

Secondly: as you probably know, my mom right now has a stage iv colon cancer. my husband is battling lung cancer in his sinus bones. my parents live about 45 minutes from us, and I can barely be there for my mom. your FIL is so far away I don't see how you've done what you have so far for him. I"m not saying don't beat yourself up. I'm just saying you're dealing with a really tough situation here.

I agree about the doctors and seeing that oncologist. I think it is a generational thing, people around the age of your FIL have it deeply ingrained in them not to challenge authority. my mom tends to do the same thing with her own treatment, although I am seeing her challenging the doctors a little bit with this latest bought but that's another story (you go, mom!).

I don't know what else to say but do what you gotta do, fight for him, ask him if you can speak to the doctor on his behalf, etc.

by the way, dave's family is the same way as your inlaws. spread all over the place. but they've really rallied and been here, literally, for dave's disease (you go, BeckyCW!) so I kinda get what you're saying about that, too, on the other hand, my siblings and parents all live within an hour or so of each other.

hang in there and please keep us posted.

Karen C.

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Tee Ta,

So sorry that you have to go through this again -- that ANYONE has to go through this at all...as everyone else has said, this d__n disease sucks.

Don't beat yourself up over what you COULD have done -- just make sure that your in laws know what they CAN do and encourage them to question authority. Like Ginny, I've been there at every appointment, asking inconvenient questions and doing as much research as I could to make sure that we were getting the best treatment possible. Doesn't mean it worked -- although so far it looks very good. It's possible that people can go ahead and do everything right and still have it blow up in their face. But it helps to know that you've done what you could. Still, if your FIL's family can't do all of that, and it sounds as if their cup is rather full at this point, at least they have you to "nuge" (not nudge, instead a Yiddish word that hits somewhere between nudge and scold) to do as much as they can.

Know that we're thinking of you and hoping that you will have a happy outcome to this latest crisis.

Ellen

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Hi Katha,

Sorry to hear the bad news about your FIL.

I just looked up Merkel Cell Carcinoma in cancerlit and found the following, general inforrmation but there are over 800 articles that contained all of the words "Merkel cell carcinoma"

there. You may want to try there. Here's what I found:

Carcinoma, Merkel Cell \

A carcinoma arising from MERKEL CELLS located in the basal layer of the epidermis and occurring most commonly as a primary neuroendocrine carcinoma of the skin. Merkel cells are tactile cells of neuroectodermal origin and histologically show neurosecretory granules. The skin of the head and neck are a common site of Merkel cell carcinoma, occurring generally in elderly patients. (Holland et al., Cancer Medicine, 3d ed, p1245)

Year introduced: 1989

http://www.ncbi.nlm.nih.gov/entrez/quer ... &dopt=Full

You and your family are in my thoughts. Have a safe trip next weekend.

Denise

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Dear TeeTaa,

I am so very sorry that this crap has hit you again. I understand your frustration with the situation because it sucks for lack of a better word! I know nothing about this type of cancer. My prayers are with you FIL and his family. You need to give yourself a break (listen to me talk... Like I would) !! :x Please know that this whole family has you deep in their prayers and loves you all.

God Bless you all,

Jane

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