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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rjr11273's picture
Replies 1
Last reply 9/8/2014 - 11:23pm
Replies by: Melissag0624

I had a 2.1mm tumor removed with wide excision from just above my right knee on August 19 and an SLND done as well with these results: superficial spreading melanoma with nevoid features, maximum tumor thickness 2.1mm, ulceration present, mitotic rate =4, 4 of 4 lymph nodes with micromatasteses. I am awaiting results of scans done on Friday

i am scheduled for further lymph node dissection on the 24th. Dr. Flaherty at MGH is recommending I begin pegylated interferon weekly self injections 4 weeks later due to the increased RFS for the subset of positive lymph node and tumor ulceration in the large trial done in Europe. Assuming the scans come back with no measurable metastises. I am also changing my blood pressure medicine to propranolol, just in case there is a benefit that will be tested soon at the university of Geneva clinical trial

my questions are, has any one done the weekly pegylated interferon treatment? What were the side effects you experienced and how well did you tolerate them? Did you have the side effects every day? How long did you stay with the treatments?

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Exhausted's picture
Replies 7
Last reply 9/8/2014 - 11:08pm
Replies by: Exhausted, Patina, Janner, Anonymous

Hi,

I have a very dark brown mole that is literally 1mm in diameter that I've had for years that I am a bit concerned about.  My dermatologist has no concern, but I started searching the internet and found multiple stories of people talking about "pin head sized melanoma" which are getting me a bit worried.  However, I can't seem to find any pictures to compare.  Does anyone here have pictures, links to pictures, or experience with a literal pinhead sized melanoma?

Thank you!

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AlkiDancer's picture
Replies 1
Last reply 9/8/2014 - 10:06pm
Replies by: Janner

I am a 36 year old female with a VERY heavy family history of cancer including a mother who had melanoma, breast cancer and ovarian cancer who died at age 51.

 

I have a dark wide line on my right thumb and a wide lighter line on my left thumb of which I have now been to two derms for.

 

The first told me it was concerning but she didn't have the medical experience to biopsy. The second agreed to biopsy then the day of the appt. changed his mind. I was so angry I actually broke out in hives.

 

So, now I am looking for a derm in seattle that can see me SOON adn biopsy this thing. Seattle Cancer Care referred me to UW Derm but their nail derm can't get me in till Jan its early Sept.!

 

There might be a doctor assoicated with Swedish who does this biopsy but they were not sure till they could talk to him when he is back in clinic later this week... which really did not make me feel great about this over all clinics knowledge.

 

Any advice?

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Replies by: BrianP

There will be a Melanoma Support Grop meeting at 6:30 at the Life With Cancer building at 8411 Pennell Street, Fairfax, VA 22031. (map it)- https://www.google.com/maps/place/8411+Pennell+St,+Fairfax,+VA+22031/@38.8634182,-77.2351737,17z/data=!3m1!4b1!4m2!3m1!1s0x89b64c816dd8a3fd:0x42190d8850b50cc4?hl=en)

A ljuncheon earlier at a different Life With Cancer location  - about nutritiona -     Cancer with a Fork-IAH 2014:
http://www.lifewithcancer.org/ajax_classDateInfo.php?classDateID=13436

 
I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/8/2014 - 9:47pm

Just wondering people's thoughts on what is the best course of action. If melanoma is detected in a major organ (lung, liver, spleen, etc) and it is resectable, is that usually the best route to take - go in and get rid of it?  Or would one consider some type of therapy (I.e. Yervoy, ipi, etc.)?  Not sure of there are any residual affects if it is just taken out. 

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melfighter's picture
Replies 8
Last reply 9/8/2014 - 9:43pm

Just to update on my husband, he has been on the combo since Feb & based on the scans from yesterday, our local monitoring oncologist said the combo is no longer working for him, and told him to him to stop taking the combo. He is now unable to move from the waist down. I tried to get an appointment to see his UCLA oncologist tomorrow or as soon as possible, but was told my husband would have to wait til next Monday.  So hard for me to wait and see him suffer til Monday without any answers.

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AlphaDetail, a Symphony Health Solutions company specializing in healthcare research, is currently interviewing melanoma patients about treatment programs, medications, and quality of life. They are looking for patients who are Stage IIIb, Stage IIIc, and Stage IV.

The telephone interview is 60 minutes and you will need a computer with high speed internet during the interview. They are also looking for individuals willing to participate via Webcam. They will send the webcam via mail and you will be allowed to keep it after your interview ($75 value).

Interested in participating? Go to:  www.alphadetail.com/mrf

You will need to complete a pre-screen survey. If you qualify, you will be directed to a calendar to select the best day and time. If you complete the telephone interview, you will be paid $150. If you elect to be interviewed via Webcam, you will be paid $200 (plus the $75 Webcam).

The telephone interviews will be scheduled September 12-17. (Limited times may be available on certain days.)

IMPORTANT NOTE:  If you have already agreed to participate in this research via another source, we cannot interview or pay you twice. 

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Happy_girl's picture
Replies 6
Last reply 9/8/2014 - 4:28pm

I just wanted to share here because I know so many of you have experienced the same emotion.... 

I had micromets in my sentinal node.  It was actually missed by the first pathologist.  So because of that, I  just had the clnd and heard that 34 nodes were removed and ALL were clear!!!! Yay!!!

I was just excited and wanted to share!heart

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NYKaren's picture
Replies 21
Last reply 9/8/2014 - 1:02pm

Howdy all 

well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

Please wish me luck. 

FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 

Karen

Don't Stop Believing

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Vermont_Donna's picture
Replies 3
Last reply 9/8/2014 - 12:57pm
Replies by: kylez, BrianP, Vermont_Donna

Hello everyone,

  Its been a while and I thought I would update MPIP on how I am doing. I am an 8 year stage 3a (melanoma on lower calf, superficial spreading type) melanoma survivor. I am B-RAF negative. I am currently NED for 3 years 7 months after completing a clinical trial of ipilimumab (3mg/kg). I will have another PET scan this month, just saw my oncologist and did labs (exam and labs all normal) but he wants me to have PET scans every 6 months until I am 5 years NED. I'm ok with that!

  I have done the following treatments: 11 months of low dose interferon injection (I was unable to tolerate the high dose after having two of them), 7 months of leukine injections, 5.5 weeks of radiation to my lower right leg, an isolated limb PERFUSION at Mass General, 6 weeks of radiation, and then finally a clinical trial of Ipi. yes my melanoma came back after every treatment except for ipi. I do not feel that any of my treatments were a "waste of time", I feel that every treeatment "bought" me more time until the ipi worked, and who knows what cumulative effect there may be?

 I have moderate right leg lymphadema and wear a JOBST custom compression garment during waking hours, a Solaris night time compression garment, and I also have a Flexi-touch lymphadema pump that I do most nights (takes an hour). As I have below the knee edema also on my left leg due to cardiac meds that I take (I also had a heart attack two years ago, unlreated to cancer), I wear a double legged pantyhose style compression garment. Hotter than heck in the summer and not the best fashion statement, BUT it is a real conversation starter when I wear shorts or capris! I just naturally do on the spot education about skin cancer. I have alot of posto

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Ninniditti's picture
Replies 5
Last reply 9/8/2014 - 5:52am
Hi! 
Has someone here had TIL therapy. I have not read about someone having good results from it. I am not sure if I dare to have it. I have done IPI and NIVO with no result. 
 

Inger

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Nik_1986's picture
Replies 4
Last reply 9/8/2014 - 4:29am
Replies by: Nik_1986, JerryfromFauq

Hi,

i have a mole on my right shoulder which I have been meaning to get checked for a very long time due to differences in colour and asymmetry. Today I woke from my afternoon sleep (I suffer from crohns and as a result sleep a lot) and had pain in my shoulder. When I examined the area that was painful I noticed that said mole was inflamed and red with an additional swelling aprox 7cm from said mole that has a small piece of darkened pigment in the middle but does not look like a mole. Both swellings are slightly sore to touch (I take a lot of pain killers including MST so it's hard to gauge the amount of pain) and my whole shoulder to my neck has a dull ache and it feels hot like a mild burning sensation.

i also am taking immunotherapy and methotrexate for my crohns which can increase the chance of developing cancer.

obviously I'm going to the doctor first thing on Monday morning but I was wondering if anyone can share some insight...

many thanks in advance

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Bruce Davis's picture
Replies 4
Last reply 9/7/2014 - 10:40pm

Feel like I'm fortunate to have been on zelboraf for 3 years with minimal side-effects although I seem to be a lot weeker with increased diarrhea lately. CT after CT show no growth in lung nodules after they shrunk by 10 X.

It just seems that people are either changing to different medicine for better results  or that Zelboraf becomes toxic.                                                                                                                                                                                                  

Myquestions are:  1. How long do people survive on Zelboraf?

                              2. What 's the next drug that works when your body has been warn down by Zelboraf?

 

Bruce 

Presently it's "Don't give up."

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