MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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FertilityDoc's picture
Replies 13
Last reply 11/24/2010 - 8:57pm

I was diagnosed with Stage IIIb Melanoma in 04/09.  Made it through the year of Interferon ending in 07/10.  Had a negative PET scan in June.  Was scheduled for a repeat CT scan on December 6th.  I had really put the Melanoma behind me.  As we all know, you continue to live with the fear.  Over the past week I have had vague right upper quadrant discomfort about 1 inch below the rib cage.   Not bad.  Just a vague sensation which seems to worsen after eating.   Could be gall bladder disease or gastritis (had H. Pylorie in the past).  Can't get fear out of my mind.  Based on my fears and for the sake of being careful I moved up my CT scan to this coming Wednesday.  I am just curious.  For those who have had liver mets, did you have any early symptoms?   Could you sense something wrong early?  Any vague bloated feeling or discomfort?

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Sharyn's picture
Replies 4
Last reply 11/24/2010 - 6:40pm

Hello everyone,

I'm sure you all remember Janet from the UK who recently underwent WBR to treat a single brain met. I believe she also had it in her stomach. Well, I received a personal email from her friend Cynthia, saying that Janet had been admitted in a hospice facility. Tonight I received this second email from Cynthia:

Hello Sharyn
It is with sadness that I have to tell you that Janet died today peacefully in the hospice with her family beside her.
She was a very brave lady who loved life and fought the cancer to the end, sadly the last treatment did not have the desired outcome for her.
I hope you continue to make good progress and so glad it worked for you.
I think Janet felt if she tried some thing rather than letting things happen then she was in control.
Best wishes
Cynthia  

I just thought you would all want to know.

Hugs

Sharyn, Stage IV
 

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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dherndon's picture
Replies 2
Last reply 11/24/2010 - 1:22pm
Replies by: vickirs, Anonymous

Any have any thought with thesewo treatments

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lalbers's picture
Replies 6
Last reply 11/24/2010 - 12:13am
Replies by: Cynthia C, lalbers, JuleFL, jag, Fen

I'm new here to this forum, and hopefully can have someone to lean on.  Dad had skin melanoma 5 years ago- had surgery, clean margins, sentinal lymph node biopsies- everything clean.  Pet/MRI/ oncologist every year.  A few months ago, dad developed respiratory problems, diagnosed with seasonal allergies.  Wrong.  Chest x-ray showed several large tumors by his heart and lungs.  Biopsy confirmed.  It's back.  He lives several states away.  They want to sell their house and move closer to me and hubs, but with the market the way it is, they can't sell, and can't move down here till it sells.  I'm a nurse, and know his prognosis, even though he tries to shield me and my brother from it- ie, they won't get copies of diagnostics, and read them to us, even though I know they have them- they say they don't.  They've already sold off some valuables they had so that mom can have enough money to move- but money really isn't an issue- she can live with us.  The thing that's killing me, is that as a nurse, I'm flexible in working, I've already told my work I may have to leave, and that's ok- I can get a travel position up there, and spend time with them- a few months, a few weeks....... Dad refuses to let me and my brother come up.  He says he wants to die there with mom, and we can come up after he's dead.  We've never been really close, although they did spend a summer, and several vacations with us in the last few years- and I talk to mom almost every day.  He's only opting for Temozolomide, even though he is eligible for severala clinical trials- but mom would have to drive him to them, and she can't drive that much.  I offered to come up there and drive them, and was turned down.  I hate this feeling so helpless.......

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naty's picture
Replies 3
Last reply 11/23/2010 - 10:07pm
Replies by: naty, Jackie W

I'm just wondering how do you fight insurance to get to major cancer centers such as MD Anderson?  We live in michigan, my father has medicare thru an insurance company here.  And FINALLY after 3 weeks of daily calls to the insurance, his oncologist, and MDA we have a signed contract JUST for a 1 day consult.  Is this typical to have to fight so HARD against the insurance companies?  I was told originally by MDA that we would be there for 3-5 days for a consult, but now we will be there for a day.

Sorry I'm trying to learn the ropes and we are new to this "game".  Any information and tips would be helpful!!   dad has stage IV (brain, liver, lung) and just finished brain radiation last monday.  

So I guess my questions are 

1.  How to deal with insurance (or is it medicare that is a problem?) or is there an insurance that you may have that was ok with MDA

 

2.  While at MDA for the consult will they discuss all his possible options in regards to clinical trials he qualifies for or do we need to know what he may qualify for (via clinicaltrials.gov) ?

3.   I may be adding more! thanks

Melissa 

 

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KatyWI's picture
Replies 3
Last reply 11/23/2010 - 6:52pm
Replies by: triciad, vickirs, KatyWI

Will they still give Ipilimumab if I have a cold?  I am supposed to start on Monday, and I started having a sore throat yesteday.  Dang.  I avoided getting sick from my kids and husband for two months while they passed bugs back and forth, but I must have gotten something traveling for work this past week.

Anyway, are there any Ipi veterans with any experience in this kind of situation?

KatyWI

Just keep going!

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BarbieGirl's picture
Replies 5
Last reply 11/23/2010 - 11:23am
Replies by: DonW, bcl, jag, King, lhaley

I'm pretty sure he said 2001 was the last time he was NED!!  Yay Allen!!  He can't get registered here for some reason so he can post.

Please keep those good thoughts and prayers directed to Allen and his wife, who's currently doing therapy for her back.

~Lisa~ 

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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jenniperry's picture
Replies 7
Last reply 11/22/2010 - 9:14pm
Replies by: Rocklove, James from Sydney, EricNJill, jag, Anonymous, vickirs

So we ended up not doing the biopsy due to subcutaneous tumors popping up in 5 spots. They scheduled him for a pet and ct. They figured the skin was pointless to biopsy due to the fact that we knew it had grown. The pet showed the mets we can feel and a few that aren't detectable yet. One of his liver lesions was unchanged at 3.1 cm, however the other that was 1.8 grew to 5.1 x 3.4 in less than a month. It also moved to the porta hepatis region of his liver and is protruding out. It is still considered to be inside the liver. They gave us the option of a vaccine trial where they removed a lot of blood and then do something to the blood and return it and be hospitalized for a week for the vaccine to be placed in a catheter in the leg. They also said we could try IL2 again. He's not a candidate for chemo or BRaff. Not sure what to do.

Cherish every day you have.

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Joan C's picture
Replies 5
Last reply 11/22/2010 - 6:27pm

I just saw this on CNN.com.  Has anyone else heard any more about it?  It doesn't read like much more than a press release, I'll try to search more on the internet.

 

http://pagingdrgupta.blogs.cnn.com/2010/11/19/device-could-detect-melano...

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2atlascedars's picture
Replies 6
Last reply 11/22/2010 - 6:15pm

SNB completed...inguinal incision is about 3 inches long...expected 1 inch.

WLE completed, but doctor couldn't close with a split-thickness skin graft, so he used cadaver skin as a temporary closure. I will have to come back in a week or so (after the SNB results) for a full-thickness skin graft from my thigh.

Looks like I won't be able to walk for about 3 weeks. Also, due to Thanksgiving week, I may not know my SNB results until the Monday after Thanksgiving.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/22/2010 - 4:43pm
Replies by: dian in spokane, Anonymous, EricNJill, Jim M., sofiaeli

Please help me. I am considering a vaccine that I would need to do Leukapherisi. Anyone have Leukapherisi, please describe the process...is it difficult or painful??? How long does it take??? How many needles, etc.

Thank you I am so scared to do Leukapherisi.

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CaptAaron's picture
Replies 2
Last reply 11/22/2010 - 1:14pm
Replies by: dian in spokane, Anonymous

Good day fellow warriors!  Well I want to reitterate that I'm overwhelmed at the responses I got to my first post.  Everyone had wonderful inputs and I trully appreciate that.  It just sounds like the entire decision is too ambiguous to make it easy on anyone, and the limited evidence supporting Interferon treatment creates another dynamic to our scenario that is also not desirable.  With the misery that ensued last Monday evening, I was at least ready for it on Wed evening when I gave myself the second injection.  Surprisingly, it wasn't bad at all.  I was a little tired, and a little spacey, but definitely nothing like the first night.  I thought this was a good sign.  My third shot came on Friday evening and again, nothing notable about the experience.  This is good.  As long as my Wed and Fri evening experiences continue, I'll be good to go.

I still think there's justification for my questioning the staging methodology for melanoma and how it can be better refined to account for the individual afflicted by this disease and not just the statistics.  However, that's not my expertise, and I'm sure there are thousands of doctors and subject mattter experts more qualified than I making those determinations.

Stay strong warriors!

2010 Stage IIIC - Lymph node dissection; Interferon 2011 Stage IV lung mets; Yervoy 3/4 only; surgery & BRAF next Through faith & prayer we will be provided with peace & healing.

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Replies by: Rebecca and Bob, Sherron, Pekoe, King, Anonymous, Fen

We have had a good 16 month break from anything going on. The scans in mid October were clear but Bob has been having a burning sensation and stomach pains cramps again. When I called the doctor last week they said they would have seen something on the CTSCAN causing symptoms, but I've heard to many times that people with Intestinal mets that they go undetected..  Anyone who has had intestinal mets please feel free to add your thoughts.  I'm just praying it's anything else. I never thought I would pray so hard for the flu or a stomach virus. Anyway, he is trying to get a scope scheduled or a PET. I know he's worried when he is actually calling the doctor himself.

Looking for positive thoughts and prayers. I have been  thinking and praying that we were done with our turn with this disease. I thought maybe it was done after the IL-2 and surgery.

 

 

Thanks for listening.

Rebecca

 

Believe

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MaryMary73's picture
Replies 11
Last reply 11/21/2010 - 11:32pm

I had my excision done on Nov 4th. Stitches come off tomorrow at 8:15am EST and my plastic surgeon will let me know if my margins were clear (is that what it's called?). I'm hoping and praying. The only thing keeping me from going insane is that my tumour was kinda small. On the Breslow scale, it was 0.39mm and very slow growing.

I have to say that this has been ONE HECKUVA journey. From thinking "Melanoma? C'mon!! Not me...I am not a sun worshipper!" to "Melanoma? What the hell are you talking about??? You must be joking!!! How the f**k did I get melanoma???".

In my opinion, skin cancer in general is promoted as being caused by the sun so whoever doesn't sit and bake for hours on end is basically immune to this crap (pardon my language).  At least that's what I thought. Boy was I wrong. I guess it's like any other shitty (excuse my language again) cancer or disease...how many people die from lung cancer that never smoked a day in their life...how many people die from cardiac arrest even though they took care of their bodies, ate well, and exercised on a regular basis...how many people die from liver disease yet were not alcoholics...

What really grinds my gears is that it is so easily treated if caught early yet so many people ignore that "ugly duckling" mole...or like me, didn't even know the damn thing was there. Us women are always told to check for lumps in our boobs as soon as we hit our mid-twenties and to make sure we get our Pap smears done once yearly as soon as we begin having sex yet no one bothers to tell us to check our beauty marks/moles. Men are told to get their prostates checked as soon as they hit 40...no one bothers to tell them to check their beauty marks/moles.

Everyone is told to monitor their blood pressure. Everyone is told to eat healthy and exercise regularly. Don't smoke. Don't drink. Eat organic. Yet we are NOT told to always keep a watchful eye on the largest organ we own. We make sure we pluck it, wax it, shave it, laser it, Botox it, liposuction it, moisturize it. Meanwhile, a tiny little abnormal mole will throw a monkey wrench into our lives and send us on a journey that we really never thought we'd ever have to face. At least I never thought so.

The only real wisdom is knowing you know nothing -Socrates

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Amy Busby's picture
Replies 11
Last reply 11/21/2010 - 7:25pm

Yet another reason for me to hate the FDA, as if I needed one.  People have been taking Darvon & Darvocet for fifty freakin years and NOW oh it's suddenly too dangerous for patients to be allowed to make an informed decision on whether or not to take it.  I have no heart problems.  My heart is regularly evaluated by my doctors.  I should be able to decide if the pain control benefit I get is worth the small risk of heart problems.  But no.  The damn FDA has taken that choice out of my hands.

I don't like narcotic pain killers.  They make me throw up like crazy and give me horrible painful constipation.  And they can easily knock me out & make me loopy.  I like Darvon because it's not that strong.  Sure I still have to take anti-nas. meds first but that's okay.  As long as it works.  Which it does.  Sure I have other stuff for when the pain is worse and I want / need to be knocked out.  But how can it be preferable for me to have to switch to Vicoden or Oxycontin - much stronger drugs?

Damn idiots.  grrrrrr

I am having pain issues from my skeletal mets.  I probably need to schedule a pain management appt. as well as my planned home health / physical therapy consult.  I just don't want to end up in a situation where my choices are operate at high pain level every day or be zonked out on pain meds all the time.

I'm up for suggestions.  I have not tried Fentynol patches but I think that's next up on deck.  Yes, I have tried smoking pot and eating pot candy.  The smoking is pretty helpful but I'm not a smoker so I don't enjoy the process (and it's illegal here in TX and I don't want my kids to know yadda yadda yadda).  The candy was kind of a bust - definitely helped some when my vomitting was the main problem, but tastes horrible and smells like tree in a BIG way.

I already take 1200mg of Neurontin for my leg / nerve pain when I did the lymph node dissection.

So I'm looking for something fairly mild but stronger than OTC, preferrably will still allow me to do my normal daily stuff.  Nothing that will knock me on my butt.

whew - enjoyed the rant!

Love,

Amy

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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