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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kab07011's picture
Replies 5
Last reply 1/3/2014 - 8:05am

Hi everyone,

I was diagnosed with stage 1B (.97) ulcerated in Oct 2009 and had a WLE and SNB negative then on my lower back. They took lots of fat and muscle tissue from under there. Only follow-ups are derm appts every 6 months. I have had 2 children since then. Baby is 7 months old now and I do carry her a good bit of the day..however, MAJOR back pain started on Christmas, I had a little here and there that would go away up until then, but nothing like this. I can't even sleep at night. I am nursing and Tylenol did not touch the pain.

I also have some bruising and itching the few days before the severe pain. I did not fall or do anything in that area and those are the only symptoms I have had.

So now here I am with bad low back pain, right in area of origiinal mel, which radiates to front pelvic region. I am thinking the worst and having a hard time functioning.

Who do I even talk to about this the gynecologist, dermatologist, family doctor or chiropractor? Should I just take an antibiotic to see if it is something infected in the pelvic region. Blood work? CAT scan? What else can it be before thinking the worst? Nerve issues/bladder infection. It hurts even relaxing or sitting. Sigh..

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Pink's picture
Replies 3
Last reply 1/2/2014 - 2:12am
Replies by: JerryfromFauq, POW, Momrn5

2006 diagnoses with Mel on leg, wide excision. Now I have nodules in my leg and went for isolated infusion in my leg, the nodules in leg responded well but foll up PET showers mets to shoulder and back and brain mets. Going back to Moffit next week for consultation for stereotactic radiation and to get started on Ipi. How are the results with the radiation I have 3small ones and worried about getting rid of them.

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Pink's picture
Replies 3
Last reply 12/31/2013 - 1:49pm
Replies by: POW, Pink

I had to request a new pass word which is only good for 24 hrs, how do I change my password?

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jahendry12's picture
Replies 10
Last reply 1/2/2014 - 5:33pm
Replies by: Janner, Anonymous, JerryfromFauq, jahendry12

Hi - I am fairly new to this site.  My husband was diagnosed with Nodular Melanoma in April 2011.  He had surgery to remove the melanoma from his leg as well as SNB.  The SNB came back with 'traces' of melanoma.  Our melanoma doctor advised a groin dissection and all lymph nodes were removed.  NONE came back with melanoma.  He was doing good, following up with scans, body checks, etc.  March of this year they found a nodule on his lung.  He was sent for a PET and then surgery to remove the nodule.  It came back as melanoma.  He just had another surgery to remove 3 more nodes from his lung as well as some lymph nodes that were enlarged.  Our Christmas present this year, was the pathology coming back as NO MELANOMA. 

So, my question.  I have never asked what 'stage' my husband is at because I knew it was bad from the beginning, but I just didn't want to live life thinking about a stage.  Since the melanoma has been found on the lung, does that mean he is automatically at stage 4?   I know I should know the Tumor thickness & Mitotic rate, but I do not.  I do know that it was ulcerated & he had had it on his leg for about 8 months.  My guess is that he was Stage  IIIc or 4.  He has blood taken every 3 months and it has always come back near perfect.  He is healthy & has been asymptomatic from day 1. 

Is there a way to tell what stage he is without knowing the exact thickness?

Thanks for any information any one can provide.

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BrianP's picture
Replies 9
Last reply 1/3/2014 - 7:15pm

Can anyone share their experience with an enlarged lymph node that turned out to be melanoma?  Was it tender to the touch?  My positive lymph node in my armpit back in 2011 was not sensitive to the touch at all.  I remember at the time the general practice physician mentioning that along with my past melanoma history the fact that it wasn't sore to the touch caused her to be a little more concerned.  I now have a slightly enlarged lymph node in my left groin that is very sensitive to the touch.  I have a check up next Monday and will obviously address it then but was curious what others have experienced in this regard.

Thanks,

Brian

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Mat's picture
Replies 8
Last reply 1/2/2014 - 5:13pm

As I approach my resolutions for 2014--a surreal experience this year given my Stage IV diagnosis a few months ago--I'm thinking about diet.  Admittedly, other than avoiding eye contact with the vending machine at my office, I haven't made many changes since my diagnosis.  I try to stay away from red meat, eat more and organic fruits and veggies, etc.  I've done a poor job of cutting out desserts--I enjoy them too much.  So, I'm thinking about my diet and wondering if I should be making more significant changes.  I looked through prior posts and it appears that opinions on diets are about as mild and in agreement as those on politics, religion, creation versus evolution, etc.  I also did some independent internet research and found nothing terribly convincing.  In the end, I've decided to skip major changes.  Wishing you all a happy, healthy (relatively speaking) and prosperous New Year.

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lll.ll.lll.ll.lll's picture
Replies 3
Last reply 1/1/2014 - 9:51am

So even tho I struggle with being tired I'm still trying to make it to the gym a few times a week, especially now that I'm off for a bit. And stretching for my upcoming back workout I feel the muscle under where my biopsy was taken is sore.. not necessarily the entire muscle (my left lat) but just underneath the area. Not thinking I slept wrong, I generally sleep on my stomach. It only hurts twisting so Im just going to limit any exercises that involve that and see how it plays out the next couple days I think.

Anyway have a great and safe new year

thanks for reading

Adam McCurry

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blden2186's picture
Replies 3
Last reply 1/1/2014 - 8:14pm
Replies by: johnbil, POW, Anonymous

I had my 3rd recurrence of melanoma in my left leg this past year.  Went through a month of interferon infusions,  radiation, and am week 18 of the 48 week self injections.   I am so tired, headaches, pin point rash, GI issues, dizziness.  Still working 30-36 hours a week.   Thinking of quitting injections - has anyone else been through this and made decision to quit early?  My oncologists (Humphrey CA Center) know I am considering stopping. 

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hdelancey23's picture
Replies 16
Last reply 1/22/2014 - 11:41am

I wanted to update everyone about my Mom's condition.  She was admitted into the hospital yesterday.  She came down to town to go to her Radiation Oncologist about starting WBR her appointment was at one o clock.  at 8:00AM she had her mom call 911 because she couldn't move.  She went into the emergency room in severe pain.  Nothing they could do could stop the pain and get her to be able to move on her own.  We still wanted her to go to her appointment but she just couldn't make it.  She was admitted into the hospital at 2:45 and put on a hydromorphone drip.  She has a push button that enables her to administer as much morphine as she needs and they are also giving her norco's.  She was in and out of consciousness and in distress when we left. Last night was good she was coherent and up and talking to all of us.  We got to say goodbye and that we loved her very much.  She is still at the hospital now and they are trying as hard as they can to manage her pain.  She fought so hard and long and unfortunately her body just couldn't take it anymore.  I told her how much everyone on here loves her and that you guys say how strong she is and that you all love her.  That brought her comfort.  I pray that she doesn't have to suffer much longer and that soon the pain and suffering will be gone and she will finally be at peace without sickness and hurt.  I do have a question for anyone that might know.  She really wanted to donate her body to science but her boyfriend does not know where the paperwork is for that.  If we can not find the paperwork what can we do to ensure that her wishes are fuflfilled and that her body does get donated to science for melanoma research?  It is still hard to believe that this is happening. I will miss her so much. 

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Anonymous's picture
Anonymous
Replies 15
Last reply 1/10/2014 - 1:18pm
Replies by: jahendry12, Anonymous, JoshF

Kaufman is leaving Chicago? Where is he going?   Does Rush have another melanoma specialist?

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Tina D's picture
Replies 5
Last reply 1/2/2014 - 3:44pm

First, I want to say Happy New Year to all. I am incredibly grateful to be alive here at the beginning of 2014. When I entered stage IV in 2005, that was a pretty unlikely scenario, so I thank God for each day I am gifted with.

I started Merck's PD1 back in July, initial scans showed a whopping 67% shrinkage! Next scans 6 weeks later were stable with no changes. I will be having scans again on the 12th of January. I am feeling pretty well overall. Biggest issue has been when my thryroid quit entirely, and that has caused some major fatigue, but synthroid is bringing levels back up, and I am def doing better. I do have quite a bit of vitiligo on face and arms; halos around many moles.Eyelashes and brows turning white. I am trusting the Lord with the outcome, but do feel a little anxious about the upcoming scans since the previous ones had no shrinkage at all. My days are in His hands, and I am thankful... so very thankful for all the years He has blessed me with. I will turn 50 this year in April and there never was a woman more happy to be hitting the big five-o.

When I was diagnosed with breast cancer in Jan 2002, and melanoma in March of 02 ... our kiddos were still so young ( 2,5,10,11 and 14) and I was only 37. When I had that first mel recurrence in 2005, I knew my days could be short with my precious family. Thanking the Lord that now our children are 14,17,22,23 and 26 and I am glad for each extra day with them and with my wonderful hubby of 30 years. May each day of this New Year be one you cherish, and make memories with loved ones. Some days are much more trying than others for each of us, and this is not an easy road... but, as I look back, I have so many amazing wonderful memories of blessed days by the scores over these past 12 years since my initial diagnosis.

With a thankful heart, and wishes for a blessed New Year for each of you,

Tina

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Anonymous's picture
Anonymous
Replies 1
Last reply 1/4/2014 - 10:37am
Replies by: Anonymous

Hi Josh,

How are you doing?? I have a friend seeing Dr. Daniels, and I thought about you.

I hope that you are doing well. How about an update!

Stay Well My Friend,

Gregg

(Anyone heard from Josh, please post his update...Thanks)

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/4/2014 - 7:48am
Replies by: Anonymous, jack6020, Tina D

My mother was improving after taking 2 types of chemo meds for her MEK gene. She also had successful whole brain radiation for her brain met. After WBR, she had little mobility in her legs but was regaining strength and was able to get around with a walker. This has been on going since this summer. Last week, she could no longer move her legs. We took her to the hospital. They did the scans and found a large tumor on her thoracic spine. This was why she couldn't walk. Seems so obvious now. Why wouldn't they have ever checked her spine in the first place? These are supposed to be the best doctors at the university of Penn!! Her tumors have also grown back, larger than before (spleen, adrenal glands, brain, spine, lymph nodes, soft tissue around her lungs, bowels, etc.). It sounds like her Dr. Is giving up. Told us that there is an approved med but it's been less successful than her MEK meds that stopped working and she's ineligible for anti-pd1. Try to keep her comfortable. 

What can I do? I can't just sit here while she's dying. I know there's another route. She's a good responder to radiation and chemo. I don't understand. 

If anyone has any suggestions, please help me. 

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Vitashka's picture
Replies 6
Last reply 1/3/2014 - 3:08pm

Hello,

i was diagnosed with melanoma 2 month ago. Mole has been removed. Test showed that removed on time, just need to remove more tissue around, so I had another removal 3 weeks ago. 

I have planned vacation to Carribean (cruise) and now need to quickly cancel or go. And my doctor is away on vacation, so cannot ask him. Trip is in 3 weeks, so 6 weeks since last cut.

please advise if it is ok to go or need to Waite some time or never go to sunny destinations!

thank you in advance

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Anonymous's picture
Replies 4
Last reply 1/10/2014 - 8:26am
Replies by: Tina D, Anonymous, JerryfromFauq, Janner

I am new to this site. I have had what felt like an itchy dry patch on my back for what seems like years. The other day I asked my husband to look at it and he said I should get it checked out. He took a picture of it and it looks very much like the spreading melanoma on this site. It is about a pencil eraser size wide and very slightly thick. There is also another one next to it that looks similar.

I have an appointment on Wednesday to get it checked out. My question is, because it is on my back I have no idea how long it has been there. Can a melanoma stay in situ for months or years before getting more advanced? I am concerned.

 

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