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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Anonymous's picture
Anonymous
Replies 5
Last reply 1/16/2012 - 8:01pm

Sam is currently in the hospital on life support. Any prayers and/or uplifting thoughts are welcomed.

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mob's picture
Replies 2
Last reply 1/16/2012 - 6:04pm
Replies by: bcl, mob

http://www.doctoroz.com/videos/dr-joe-mercola-s-health-recommendations-pt-2 

 

And the salons are noticing an increase in tanners already  -     http://www.tantoday.com/forums/news-about-tanning/45206-dr-oz.html

Here is a link incase anyone wants to write to the show

 http://www.doctoroz.com/contact

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himynameiskevin's picture
Replies 13
Last reply 1/16/2012 - 4:42pm

Well I finished my fourth dose of Yervoy of December 20th and just got a call from my Oncologist regarding my results. Unfortunately the MRI of my brain which was clear before, now has three lesions. Two are extremely small and one is about 9mm, a little bigger than a pencil eraser. So first things first, Tuesday morning I'll be scheduling an appointment with my radiation oncologist to see about zapping these things out of my brain, just like the one they zapped over a year ago. I'm hoping these go away as successfully as the other one.

My oncologist has yet to see the CT of my chest/abdomen/pelvis. I just picked up the disc and I'll be taking it to him first thing Tuesday morning to see what it shows. With the news of the brain, I don't predict the results be in my favor. But come Tuesday, we'll know the full status and hopefully discuss possible options.

Naturally, this came as a bit of a shock and I'm a little worried, not sure how my time and options are looking. This waiting is the hardest part. I'm kind of out of the loop as far as options and new trials that may be available, if anyone has any suggestions or information that might be beneficial, I'd sure love to hear it. This board helped me through this exact situation that I started in a year and a half ago, gave me hope, helped me see things more clearly, and essentially got me "on the mend" for a little while. And here I am asking for a little help again. I'm down, but not out. And far from done. I figure if I got to a better position from where I started once. I could do it again.

-Kevin

Ps. By the way I still feel fine, I feel as normal, pretty sure no abnormal pain or anything. Also, my doctor told me not to rule out the Yervoy yet, he said sometimes it can take a while to kick in, so I guess I'm still hoping for that. We'll see.
 

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Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Mrsgkr's picture
Replies 3
Last reply 1/16/2012 - 7:40am
Replies by: FormerCaregiver, Mrsgkr

Hello everyone. My husband had surgery on December 8, 2011 to remove a malignant melanoma (stage 3) from his abdomen. He also had two lymph nodes removed from his left groin. He developed an infection in the incision where they removed the lymph nodes. The infection has cleared but he also has what the doctor refers to as 'tape burn' at the site of the same incision. He has been using Silver Sulfadiazine on the burn twice a day since December 10. His doctor says it looks better but to us it doesn't look like it is getting any better. Not sure what to do.

Another problem is that he now has no energy. He was doing really well the first two weeks after the surgery now suddenly his energy is gone. We also brought this up to his doctor, who said it's normal. My husband is a landscaper and pre-surgery he was so energetic the only time he ever stopped was when he went to sleep. This has both of us confused and him very worried that there's more going on. 

I have done a lot of searching on the internet for lack of energy after surgery, but nothing that touches on what he's experiencing.

If anyone can give a little insight, or perhaps someone to speak with, it would be very much appreciated.

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jimw's picture
Replies 9
Last reply 1/15/2012 - 8:12pm
Replies by: Gene_S, fdess056, scots, atcchris, jimw, DonnaK, Anonymous

Hi on November 23rd I had a tumor removed from my upper arm and a sentenal lymph node. THe cancer had just barely spread to the node, 1 only and none other detected. THe post op showed all the tumor removed and clear margins. On December 21 they removed the 23 surrounding lymph nodes, and they were all clear. I also had a petscan that was normal. I am graded at a stage IIIb because it touched my lymph node. Had my first visit with the cancer dr two days ago. He has ordered some up dated tests but for now I have two choices,, just go through Observation,,or go onto interferion. The Dr. will just give the facts and with interferon, facts are scatered everywhere. I did a lot of reading on it and there are as many pros as cons, and the side effects are pretty bad it seems.

I'm 63 and in good health, but live alone exept for my dog. I work and don't want to retire yet but the idea of having the flu for a year and then after the treatments being back to square one is perplexing. For now I am leaning to not take the treatment, but my kids, in their young 30's aren't happy about it. I know I have to make my own ecision however any reliable facts out there on interferion? It seems as elusive as is melonoma.

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Minnesota's picture
Replies 16
Last reply 1/15/2012 - 1:33pm

Hi all, I hope it's okay to ask these questions..

I am having an SNB and WLE next week for a 1.45mm SSM with a mitotic rate of 5. I was told that all my lymph nodes will be removed in that area at the same time if they find anything.

This is what I don't understand:

I have read many patient stories here, and also in newspaper/magazine articles. I keep seeing where a person has the melanoma removed, sometimes having SNB, continuing all their follow-up (with good/clear news along the way), and then discovering they have mets in other organs.

How do they get there?

Were they already there from the primary before the melanoma was diagnosed?

Can you have clear lymph nodes, but already have mets somewhere else?

Thank you for any answers, I am not trying to scare myself, I am just trying to understand.

 

Persistence (sometimes) Prevails When All Else Fails

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Lilylove414's picture
Replies 2
Last reply 1/14/2012 - 10:49am
Replies by: Lilylove414, washoegal

So this morning I had an appointment at Blue Ridge Cancer Care with Dr. Mertin. She is so great! I told her all about how my cancer was diagnosed and she was shocked I've had to wait so long to start treatment. So she has me scheduled for a PET scan since it's been 3 months. Then next Thursday I have an appointment with her PA to talk about treatment side effects. The week after I have a surgery consult to get the rest of my left arm lymph nodes out. This is the progress I should have gotten months ago and I'm not planning on returning to UVA. Praise God for good doctors!

If God is for us, who can be against us?

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Merrill Goozner's picture
Replies 1
Last reply 1/14/2012 - 8:16am
Replies by: RMcLegal

Hi,

I am the senior correspondent for The Fiscal Times, a relatively new publication available here (http://www.thefiscaltimes.com). I am writing a story about the high cost of new cancer drugs coming to market in recent years. Two approved by the FDA for melanoma last year were Yervoy and Zelboraf. I was wondering if there were any melanoma patients on this message board who have struggled with affordability issues in obtaining these new drugs. You don't have to have forgone using them because of cost, but that may have happened in some cases. If you are willing to share your story, please contact me offline at mgoozner@thefiscaltimes.com.

If I have offended anyone by this request, please forgive me. I have already interviewed the executive director of the MRF on the general issue, and was hoping to gather some individual stories to humanize my article.

Sincerely,

Merrill Goozner, Senior Correspondent

The Fiscal Times 

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mom3girlsFL's picture
Replies 4
Last reply 1/14/2012 - 6:56am

Anyone had issues with itchy skin?  Not on any treatment right now, off interferon since sept.  A little nervous because I googled itchy skin symptoms and came up with possible internal issues with liver.  Have onc appt tomorrow so of course I will bring it up, just need to shut my brain down from all the negative thinking but would also like a "heads up" if this was a symptom for liver mets?

Thanks, Laurie

Do not fear tomorrow, God is already there.

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Lilylove414's picture
Replies 7
Last reply 1/13/2012 - 8:56pm

So UVA was alright, if the actual talk with the doctor wasn't so disappointing. Of course he started me off with news I already know, my tumor is too small for a trial, and my scan showed a small lymph node under my right arm. Even though he thinks it's nothing, he wants to be positive and have me in again for a CT scan later this month. Then, he wants to take the rest of my lymph nodes out under my left arm, which I was suspecting. Still don't want any more surgery! After that we can start treatment. Considering I've been getting the every 3 week visit, it'll probably take til spring to get me started on interferon. At first I was so frustrated, but now I'm just so tired of waiting. And apparently he had an emergency or something because after he told me to get dressed from the physical glance over, he never came back! He had some nurse come in and tell us that we should come back in 3 weeks for the scan. That's what made me so mad. Anyway, right now I get to wait. I am not a patient lady.

If God is for us, who can be against us?

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Gene_S's picture
Replies 3
Last reply 1/13/2012 - 8:30pm

Tomorrow, Gene goes for another maintenance dose of IPI/Yervoy (10mg/kg) with the GM-CSF injections that he does daily for two weeks on and 1 week off and then the 3rd of February will be more scans.

We are hoping that this will put him at NED (no evidence of disease) and he can finally stop the infustions.  The first of March will be one year since he started on this clinical trial.

Judy (loving wife and caregiver of Gene Stage IV)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Tracey FL's picture
Replies 1
Last reply 1/13/2012 - 8:28pm
Replies by: Theresa123

I am finally back on line with the new form of board.  Moms first treatment did not work so we are on to the new one PD-1.  Her last CT scan shows that things have doubled in size and number.  I cried for two days.   She seems so well but she has been stage lV since Feb.  Has anyone out there done the PD-1 trial? I would love to hear.

Tracey

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SStamps's picture
Replies 1
Last reply 1/13/2012 - 8:25pm
Replies by: Theresa123

The tumor on Mickey's spine showed leptomeningeal. Mickey had 7 rounds of radiation on tumor finished on 12-08-11 and ommaya was place on the same day. On 12-14-11 treatment started with IL2 administered thru ommaya 5 days in a row one day off then another dose after this dose he became very confused so they didn't do anymore treatment that week.  He got better and they let us check out for Christmas then back the following Tuesday.  He was able to handle 2 treatments that week and again he was able to check out for New Years.  Checked back in and finished with 3 treatments that week.  Back to hotel and scans this week. Dr Papa said the radiologist e-mailed him about the brain MRI and spine MRI.  Tumor in brain is larger and tumor on spine is smaller from radiation but looks like leptomeningeal  has spread up the spine.  Dr Papa said that this could be inflammation from treatment also every time they tapped him the spinal fluid has been clear of cancer cells but will know more in 4 weeks.  So we made it home last night and next week starts the once a week for 4 weeks then scans and maybe 2 more once a weeks then goes to 2 weeks and so on up every 6 weeks possibly every 8 weeks.  Mickey is doing well other then tired and and not much of an appetite. I have read that AmyB had this same treatment? But I am unable to find any of her post.  I have read her sisters

Hoping you all have a blessed new year

Samantha

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