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.

Expand/ Collapse Topic
 
Replies By
View Topic
Angela C's picture
Replies 3
Last reply 9/13/2012 - 10:34pm
Replies by: gabsound, Phil S, aldakota22

Hi everyone.

Just wanted to put out an update. I did the IL-12 TIL trial at NIH in April. I had three months of stable scans. Last month's scans showed slight growth of my adrenal tumor and now this month's scans showed a new 5mm brain met. UUUGGGHH. I've had one other brain met and that was a little over a year ago. I had SRS and it took care of it. So, now I'm needing to do SRS again for this new met.

I'm not sure what the plan is from there. The doctors at NIH will be discussing my case next Monday and what they think I should do beyond the SRS. Since something new has shown up since the TIL treatment, they are thinking it's probably good to move on to something else. The possible options mentioned at this point have been a reinduction of Yervoy, IL-15 and another TIL trial.

Other than the brain met, my other tumors were pretty much holding steady from last month. Perhaps a tiny bit of growth in the main tumor in my adrenal gland. It's so frustrating that if the brain met wasn't there, I'd just get to keep moving forward with my monthly follow ups. But, now I need to move on to something new. Fun fun. The brain met caught me by surprise. I guess I should know by now that there is no rhyme or reason with Melanoma and it can show up whenever and wherever it wants to.

~Angela

Be kind, for everyone is fighting a great battle. -Plato

Login or register to post replies.

I told my psychologist that, following the fifth surgery, and the not yet faded scar of the first and largest wound on my back, I am feeling defeated at the prospect now of every three-month dermatology check-ins, and the ongoing six month neurology MS check-ins, and the monthly visits to other doctors (osteoporosis, scoliosis, and thyroid monitoring.) I cannot afford to see them all this much ... co pays are exceeding our limited pension income. My husband has just today filed for his social security, as my 30 year pension is not enough to cover all these medical costs. So add worry about bills to all the rest.

I just want to walk away from my extended family; siblings don't seem to understand that melanoma and surgeries on top of MS weakness and depression (and a very tight budget ) doesn't leave me in a 'let's get together at a restaurant' mood.   I'm so tired, and so down, and so hurt, and so confused. I feel damaged by the surgeries, and worn out by the summer.

Does anyone else here have reddish/purple scars that are Z shaped and seven or eight inches long and two to three inches wide in shape? I have two like that, one on my back and one (a bit smaller) on my forearm (that one is very visible.) I didn't think the scars would bother me, but they do ... I feel like I was attacked and marked by a gang. No one sees my back but my husband, but still it bothers me. Why is that?

I have more for them to find - moles or age spots that are changing on my neck, and on my upper chest. One site has begun bleeding each time I wash it, but I see the dermatologist next month, and will wait 'til then.

This post is disorganized, as I am. I just can't keep my thoughts straight. Best I can do.

I am not perfect, but I am enough.

Login or register to post replies.

lilahs's picture
Replies 7
Last reply 9/13/2012 - 6:12pm
Replies by: mlbjab, lilahs, Janner, Brooksy
I was recently diagnosed with in situ melanoma on my lower leg. The lab results state "The lesion appears to be completely excised, approximating the nearest margin to within 3mm." Initially on the phone, the doctor told me that even though the standards of care are to remove 5mm from the margins, that he doesn't necessarily feel that I need the additional biopsy. He said that he usually abides by the standards of care, but doesn't believe it is necessary for an additional biopsy. When I went in for my appoinment to remove the stitches, I asked multiple questions about the additional biopsy. Now he is telling me that he recommends having it done.  I believe he is saying that to cover his bases. I'm wondering if anyone has any opinions/experience with this situation. I'm comfortable not having the additional biopsy since the margins were clear. I've also had a rough recovery. I don't feel like it is a huge concern to get the additional biopsy, but maybe I'm being to relaxed about it???

Login or register to post replies.

kpcollins31's picture
Replies 6
Last reply 9/13/2012 - 6:49am

First off, thanks to all the posters on here for the information and encouragement. I posted on here over a year ago (Feb 2011) when I was first diagnosed at stage 2C from something that looked like a wart on my left forearm... went through the WLE and sentinel lymph node biopsy - all clear. PET scan was clear. Life continued as normal with the exception of the oncology and dermatology followups.

Fast forward to 2 weeks ago - noticed a strange lump between my armpit and my elbow. Was not too concerned but asked my dermatologist about it since I had an appointment anyway. The next day I was talking to the oncologist (new one since I moved to North Carolina a few months ago). He did not think lymph nodes were in that location but he had me scheduled for a biopsy the very next day.

When they were doing the biopsy, they noted that it was a lymph node after they drew cells from it. At that point, my heart sunk a little. Then I made a comment about not expecting good news since it was a lymph node... dead silence in the room for about 30 seconds and at that point I knew. I had the weekend to come to terms with what I expected to hear and then heard today from the oncologist. The lymph node contained melanoma so I am now stage 3C.

Now I am being referred to a Dr. John Stewart at the Wake Forest Baptist Health Cancer Center in Winston-Salem, NC (about an hour from where I am in Mooresville). Not too many choices for stage 3 other than interferon which I have already decided against. Just going to try to keep a positive attitude and take one step at a time... none of us ask for this but we deal with the hand we are given. Seeing the long term stage 3 and 4 survivors on here is encouraging.

Kevin

  

  

Login or register to post replies.

frankMill's picture
Replies 11
Last reply 9/12/2012 - 8:32pm

I was diagnosed on 8-17 with Stage IV melanoma in my chest, had surgery on 8-31 and am now NED.  So far, I've been treated at Baptist Hospital in Jacksonville, FL but I consulted with Dr. Jeffrey Weber at Moffit last Friday.   Both Baptist and Weber tell me that the chance of recurrence is 75-80% and that I should be on some adjuvant therapy. 

I am very impressed with Moffitt.  They have three trials, anti-PD1, Mage vaccine, and Yervoy.   Baptist has one trial that is randomized between Yervoy and Alpha Interferon 2b.   Dr. Weber strongly suggested the PD1 trial based upon my profile but I may not qualify (waiting on the results of the HLA-2 test).  The onccologist at Baptist suggested that I either get on their trial or start "Peg Alpha Interferon".  

This is a hard decision and it feels like I'm rolling the dice with my life. My gut is telling to roll the dice with PD1.  Whatever choice I make I need to feel good enough to be able to work on my computer from a home office.

Does anybody have any advice or personal experience they can share to help me with my decision?

Thanks,

Frank 

 

 

Login or register to post replies.

mama1960's picture
Replies 3
Last reply 9/12/2012 - 8:19pm

Will be going to MD Anderson for an appointment on 9/25. Was told to plan on staying several days and leave travel plans flexible. Hope they go ahead and do the surgery. I have not been on a vacation in years because I did'nt feel like I could afford to fly. Hope one trip does it.

It is what it is.

Login or register to post replies.

Community Health Resources Center is presenting the final lecture in a 3-part series on melanoma, details are as follows:

Date, time: Wednesday September 26th, 5 - 6:30 pm

Presented by: David Minor, MD . This lecture will address the advanced stages of melanoma and treatments that are available during stages III and IV. The most current research will be reviewed. Refreshments provided.

Location: 2333 Buchanan St., Level A Conference Room, San Francisco, Ca 94115

Cost: Free! Any donation contribution welcome, $10 suggested

Registration required: Call 415-923-3155, or email cpmcchrc@sutterhealth.org

We look forward to seeing you there!

Community Health Resource Center... the next step to better health

Login or register to post replies.

natasha's picture
Replies 5
Last reply 9/12/2012 - 2:51pm
Replies by: natasha, bron, lhaley

      I am very sorry for this question ,but - is it o'k to have freckles on genitalia?

I am very embarassed to ask ,but I did full body check (as I do every month0 AND CHECKED MY GENITALIA AS WELL.

I have couple of freckles in where.

I do not know is it new ones or not ,because I never checked that area.

My Doc is male. My next appointment is in October.

Can I ask male Doc to have a look?

I am sooo embarassed......

Please , give advice

Thank you

Login or register to post replies.

DebbieH's picture
Replies 10
Last reply 9/12/2012 - 1:16pm

I'm posting this to maybe give some hope to those who are recently diagnosed. 

11+ years ago I found that the tiny stage 1 "lucky to have caught it so early" melanoma had returned to my lymphnodes and I was now stage 3C.  I wasn't hearing much hope from my doctors or where I went for a second opinion.  They were wheeling me into surgery at Univ. of Michigan right after the second tower was falling in NYC so I missed most of what happened that day.  When I woke up I was told I had 3 positive nodes and one had matted and had extracapsular extensions going into a muscle in my back so that was also removed.  My surgeon said he just kept going until he didn't see any more black.  I wanted to do a clinical trial but a brain mri showed "something" there so I didn't qualify and so I did interferon and got through 9 months before I had to quit.  U of M won't do scans (at least not then, not sure if that changed) after stage 3 unless you have symptoms so I had no scanxiety and I think it was easier for me to get on with my life once the side effects of the interferon were gone.  By the way, while it was no picnic, I found it doable and I'm glad I did. 

In the past 11 years I've had 4 more grandchildren, acquired two more by our daughter's marriage, our daughter got married and is very happy and life is very good. 11 years ago I would never have imagined this.  There are plenty more like me on this bulletin board and if you were recently diagnoised, NEVER FORGET THIS.  I don't know what I would have done without this place and I thank the Pattersons for having the wisdom and compassion to begin this bulletin board in their sister's memory.  Never give up, never think of yourself as the number they all drill into us with their statistics.  Good luck to us all.

DebbieH, stage IIIC, NED 11 years today after interferon and no scans 

Login or register to post replies.

frankMill's picture
Replies 0

"Forever, physical humans are saying, "give me the truth, give me the truth." And we say, there are all kinds of truths. Choose the truths that serve you. Now, there are a lot of people that would feel great discomfort with that. But the thing that we want you to hear about it is: there is a truth of cancer, and there is a truth of wellness. Which truth serves you? You can activate either of them within you, and make it your truth. Truths are created; they aren't static. They aren't conditions that exist that then it is your obligation to identify and catalog. You are the creator of your truths—and what you are living is your truth."

--- Abraham Hicks Hicks Hicke

 

I wish everyone out there the truths of wellness, hope, and courage.

Frank

Login or register to post replies.

Replies by: awillett1991, Tina D, Anonymous

A couple weeks ago, I was just geting increasingly sick with Z side effects and last wk, my Oncologist gave me a one week vacation. I started this vacation last Wed, and by Fri was feeling like I was coming out from under he cloud :)  . Fri night brought sudden onset of sever epigastric and RUQ abdominal pain. Endured this for next few days and went to family Dr on Tuesday. Probably gallbladder & sent me to ER. They concurred, and ran labs and ordered CT scan. After a bit, the very kind ER Dr came in and said. well, your labs are all fine.. ummm.. and your pregnancy test was posiive. Bwahaha. No question abt me being preggo, and hubby and I chuckled.Due to treatments, I went into menopause several years ago. But they didnt want to do CT scan with this pos result. We all researched while in ER to see if Z can/or has caused this particular erronious lab reading. Found nothing. Went for ultrasoung next day and had to have pelvic u/s to rule out pregnancy. U/S showed lg gallstone in mouth of gb and def not pregnant. Had gb out yeserday. Wondering if the increasing symptoms I was having the last 2 wks on Z (( esp fever, chills,nausea and vomiting) were actually from gallstone?? Recovering nicely and was granted 1 more week off Z while I  recover.

What some people wont do for a Z vacation, haha! SSeriously, though, I am thankful for the timing of it all.

Has ANYONE heard of Z causing a false positive pregnancy reading in labs? I wonder if it affects hormone levels somehow? If so, his seems like it could be problematic, esp for someone, for example, who may also have history of hormone positive breast cancer. I will contact the Z hotline next week, or ask my onc how to get it reported.

In the meantime .. I had my first "normal person" problem and surgery in 10 years!! It was so fun to have the Dr call and announce.." well, you just have a normal problem, here" . Thankful for that!!

Any thoughts or similar experiences?

Tina D

Login or register to post replies.

Karin L's picture
Replies 10
Last reply 9/12/2012 - 12:31am

I thought I was doing great until the 6th day of taking Zelboraf.  I was taking 4 pills twice a day.  Is this the normal dosage?  Started with fever of 102+ which I have actually been battling up and down for 3 -4 days now.  Also, I have a chicken pox type rash all over my head, ears, neck, back, arms, and belly.  My eyes became really droopy and bloodshot which the nurse said was totally from the Z.  Script for prednisone for the eyes.  Does all this sound like what others have experienced as side affects?  How do you handle it day after day?  I cannot imagine having  this chicken pox itchy rash  every day.  They did take me off the Z for the weekend and we will reevaluate on Monday.  Nothing has changed though *sigh*. 

BTW, I haven't updated lately and some requested I keep them posted.  Been a rough last couple of months.  Mel went into the lower L5 area of the spine and is pressing on the sciatic nerve in my right leg.  Also has a lesion on the sternum.  Radiated both areas and it didn't do much.  Pain became so severe I was hospitalized to get it under control.  I have an amazing pain Dr. who just did not stop until we checked every avenue of treatment to help the pain.  (I was at a different hosp. than my onc's.)  Very close to permanent paralysis after the MRI'S and CT's.  Unfortunately, where the mel is makes it too risky to try most treatments.  So, we went off the ipi and on the Zelboraf since time was not on my side.  The pain is under control and 2wks ago I could barely walk....now I am doing great walking with assistance (walker or cane). 

 

Karin

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 9/11/2012 - 10:54pm

My husband (age 31) has Stage 3C Melanoma.  (Clark Level IV, 1,4mm, no ulceration, 2 positive lymph nodes extremely large in size that were matted together with extracapsular extensions in one).  He was diagnosed  in late February 2011/early March.  In early April he had a surgery to remove remaining lymph nodes in the area.

June-July 2011-  6 weeks of radiation to area

July 2011-2012- Interferon treatment

I have done so much research on whats to come, and the statistics are just heart breaking.   I've been to almost every single appointment, so I'm pretty well informed with everything; however, I just feel like there is so much information I do not know.  

I want to stay positive and think that treatment is behind us and the only thing to focus on now is follow-ups; however,  I can't get the stats out of my head.  We haven't had any discussions with doctors on the what ifs.... 

 

If it changes to Stage 4....

1) What are the treatment options- how long, effectivness, how does the side effects compare to the previous treatments

2) Less than 30% survival rate....what on earth do you have to do to be one of those few people that live a long healthy life?

3) Are there ways to get Life Insurance with such a late stage of Cancer?

 

I do not like the "wait and see" game... he recently had a PET Scan done, and we will have results next week...and the scan-xiety just doesn't go away.   He doesn't want to think of the what ifs and worry...which I"m glad he is staying positive and upbeat, but it makes me scared to ask these questions to his doctors because I don't want him to think I"m not being positive about everything.  I so much hope that everything will be fine from here on out,  but the stats...tell me something else. 

 

Is it possible to look forward for life to return to what use to be normal anytime in the future...or is this the new normal? 

Login or register to post replies.

bron's picture
Replies 2
Last reply 9/11/2012 - 10:32pm
Replies by: kelsta78, Anonymous

hi again. 

still confused here.

i have contacted Jay from australia and he states, get a second opinion.

Have talked my daughter into getting a referral from her doctor to PA hospital (largest melanoma hospital in Brisbane).

Have talked to the PA and they are happy to talk to her.

Phoned  MPA - Melanoma Patients Australia and the phone was answered by none other than the CEO who was walking past.

He could not give me much information but promised to have someone phone me back.. Nothing yet.

I used the chance to complain to him about the lack of help and information available on melanoma and that i had to get my info from the USA.

He listened and stated he was meeting with members of Parliment later in the month on that very subject. So here is hoping something may get

moving... I am also amazed at the lack of knowledge about melanoma by the australian people... since this all started every single person i have met believes that if you have a melanoma it is simply cut out and thats the end of it... even one child care worker told me that...we need more public awareness here.

My questions if anyone would please help me are.

1.Can a CT scan show up small tumors...my daughters doctors told her its a waste of time at this point.

2.Should she have any blood tests at this time . have seen LHD levels mentioned.

3.is the fact that her pathology shows the melanoma is ULCERATED really serious.

4.Do all tumors in the body show up by enlarged lymph nodes or can you have tumors without swollen lymph nodes.

The info out there says tumors likely (if they show up at all) between 2 to 5 years after primary mel removed. However my daughters mel lesion was on her back for up to 2 to 3 years prior to surgery so how do they calculate this...

Sorry for all the questions but these are the ones i havnt found answers to with my research.

My daughter was breslow 2mm with ulceration on her back with a clear lymph node removal.. i think its called the sentinal  .T2BN0M0

thank you and very kind regards from bron.

 

 

Login or register to post replies.

Pages