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 6/21/2017 - 10:24am
Replies by: Scooby123, SABKLYN, Anonymous, NSNewf

I am currently 3a declared NED following negative path and PET in March. I had a functional neck dissection done on my left side and was declared NED. I noticed a swollen node on my right side just below my ear. I had followup with Dermatologist yesterday and he did not seem concerned. My next appointment is with ENT in October. Should Ilook to get into ENT early?  Do you think this is an area of concern?

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cammeronwall's picture
Replies 1
Last reply 6/21/2017 - 8:03am
Replies by: SABKLYN

Hi! We have an all clear on NO melanoma in my eyes. We were sent to an ocular surgeon today. So that's good news. Thursday we visit an oncology surgeon to discuss a SLND and wide excision. Friday- we have an appointment to do the same at Emory in Atlanta Ga with a well known surgeon and then next Thursday one of his partners will see me. She's a melanoma specialist. Having said all that, should we go ahead Thursday IF the surgeon says he wants to go ahead and do the SLNB and WE  or wait until we've spoken with the second surgeon? 

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Shaneswife's picture
Replies 8
Last reply 6/21/2017 - 7:02pm

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lesleynunn's picture
Replies 6
Last reply 6/21/2017 - 1:30pm

This forum has been a tremendous rescource for me, thank you to all who contribute!

My father, age 59, was diagnosed with Stage IV melanoma on April 14th.  Brain mets x6 was the first area found, 1wk later spinal mets were found.  He had an emergency craniotomy, 2 lesions removed, has done gamma knife x1, 12 rounds of IMRT on brain and spine.  He has had 2 opdivo infusions.  F/u MRI showed remarkable improvement in brain, 1 new lesion,  they scheduled him for another gamma knife.  Spinal lesions were smaller as well.  He continues to have bowel and bladder dysfunction.  He is walking unassisted but has pain and weakness in right leg.  

No primary site has been found, he is BRAF neg.

We are not specifically seeing a melanoma specialist, however I have been pleased with the care he has recieved thus far.  I just wanted to "compare notes" and make sure we are doing all we can.  If anyone has any suggestions as to questions I should ask his team of doctors, or treatment recommendations, I greatly appreciate any thoughts/experiences/recommendations you are willing to share.  I have read some about leptomeningeal metastasis, mostly bad, but his doctors seem hopeful.  

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Since upon office visits the NP's always keeps track on the medicines and supplements take,I thought it would be useful to post the list of the supplements I am taking on a daily basis:

Turmeric 500 mg

Echinacea 760 mg

Vitaminn D3 3x2000 IU

Vitamin C /preferably from fresh squeezed lemons rather  than the pill formula/

 I know the turmeric's  health benefetis had been discussed  multipletimes  on this forum. Whilst there is no proven scientific evidence it prevents or even cures cancer as implied by studies, it's a powerfull anti-cancerogen  that greatly boosts the  immune system .There was actually conducted  research on the cancer rates in India where turmeric, chilli, corriander,curry,cumin,cinnamon are commonly used in their menu .The research  found that the cancer rates in India are four times less than those in the developed countries.I always try to include these powerful anti-oxidants in my menu when possible,  even though my stomach is sensitive to spices.I thought it was worth mentioning that I have been taking Turmeric every day for the last 7 years.

I hope that helps,

Have a good day everyone

Teodora Chasse

/Reposting due to inadvertenly posting as anonymous the first time,sorry/

 

 

 

 

T.Chasse

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Marymary's picture
Replies 1
Last reply 6/19/2017 - 10:19pm
Replies by: jennunicorn

Hello all! 

So I got the call in November that I had a .4mm malignant melenoma on my back. I had it removed with a. Wide excision in December. Since December I've had two atypical moles removed and one shaved. 

My current treatment plan is to see my dr every 3 months and sun protection. That's it! 

So my first question is.. is that it? Should I be doing more? This melenoma has caused me so much anxiety and stress over dying. I feel like I'm turning into a complete hypocondriac nut! I have three children under 10.. I can tell help it. I want to be here. 

my next questions have to do with geography and sun protection . I live in Florida:( So obviously the sun is always around! Which means constant sun protection is needed, right? Are normal long sleeved pants and shirts enough or does my entire wardrobe need to be spf? And how long does spf clothing last and maintain its protection? 

Are my chances of more melenoma higher if I remain in Florida? I stress everyday about the sun. Plus I'm worried about my kids future health. 

what about sunscreen? What sunscreen should I be using?! What about the chemicals that are suppose to cause cancer? 

well that was a lot! Sorry but not sorry.. I don't feel like drs give us enough information.. not enough info about the stupid disease and not enough info on how to live after.

 

appreciate any help you can give me:) 

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Christine.P's picture
Replies 8
Last reply 6/20/2017 - 3:38pm

I started the Taf/Mek combo two weeks ago today and did fine as far as side effects the first 10 days or so. Starting just last Saturday, I was clobbered with fevers, joint pain, muscle aches, headaches, and fatigue. I was sort of expecting these, but was told that if my fever hit 100.4 or above, I should call the doctors. 

Well, my fever hit 101.6 Sunday night, so I called the cancer center today. The only NP they could get me in to see was the same one who ignored my symptoms for pneumonia when I was on the ipi/nivo combo and I was not happy about having to see her today. While I was in their office, my fever spiked at 103.1. 

She basically said these are the side effects and she called for a CBC and sent me home. I said, well, I thought that I was supposed to call if my fever hit 100.4 because there was risk of infection. She said, yeah, call us back on Thursday if it's not better. 

I am just wondering how much of a fuss, if any, I should be making about this. The phlebotomist who drew my blood for the CBC couldn't believe the NP didn't ask for blood cultures to check for infection, so the phlebotomist pulled them anyway. Who knows if the NP will let the test be run or not. She's not very good at being told she's made a mistake.

So, I am at home, taking my Tylenol and just wondering what you all think of this situation. I need to go back to bed, but will check in later. Many thanks for your help.

Chris

Christine P. 

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Mommyto2's picture
Replies 12
Last reply 6/21/2017 - 5:36pm
Replies by: Anonymous, Mommyto2, coltbnme

Hello all, I read a lot on this site after my biopsy, and I received the bad news of cancer on 6/16/17. I ignored a new mole for about 5 years. Very dumb, I know. When the mole started changing in appearance, I got it biopsied. Now I'm losing my mind, I can't stop thinking about my children and the effect this will have on our family. I will post what my path report said in hopes that some of you kind souls will interpret for me. All I know is that, yes it is melanoma, and I have an appointment scheduled for 6/30 for a wide local excision and snlb. Path report :
SKIN, UPPER BACK, LEFT SHAVE BIOPSY
- INVASIVE MALIGNANT MELANOMA
SUMMARY:
HISTOLIGIC TYPE: NODULAR MELANOMA
MAXIMUM TUMOR THICKNESS: 0.96 MM
ANATOMIC LEVEL: IV
ULCERATION: NOT IDENTIFIED
MITOTIC RATE: 5 MITOTIC FIGURES PER SQUARE MM
STAGE: pT1b
This was a shave biopsy, please help interpret this for me. I'm losing it and everything I try to research is just making me more confused. Thanks in advance.

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fallingstars's picture
Replies 6
Last reply 6/21/2017 - 7:04pm

Test

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newmanmark's picture
Replies 2
Last reply 6/19/2017 - 8:25pm

Hi,

My latest scan showed that my tumour has shrunk further.  When I started the tumour was 5.5cm.  After 3 months it was 3.1cm and now it's 2.9cm.  Not as much of a decrease as I was hoping for but I'll take it!

My oncologist also mentioned that what sometimes looks like a tumour on a CT can actually be scar tissue.  Has anyone had that happen?  I'm praying that there are no active melanoma cells in there and its just scar tissue remaining!

Mark

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Anonymous's picture
Anonymous
Replies 8
Last reply 6/20/2017 - 5:04pm
Replies by: betsyl, MikeW, Julie in SoCal, Anonymous, Sharon93065

My husband, stage IV, finished a course of opdivo over a year ago.  Never recovered from side effects though.  Now we have moles popping up (waiting on biopsies) and a cluster of basil cells removed.  His whole body is wracked with pain.  Swelling, and has 2 large growths in his scrotum that we dont know what they are yet.  Depression is overwhelming for him and is seeing a phychiatrist.  (i need one, but am laid off and no insurance)  Rhumatologist thinks he has Lupus.  

What the heck is happening?  

R

 

Bin

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ahg747's picture
Replies 4
Last reply 6/20/2017 - 3:17am

Hello everyone, this is an amazing forum and I have learned so much in a very short time from all the postings here, especially the articles and links that Celeste has posted.

Just over 5 weeks ago I noticed a strange small lump on my collarbone, which was eventually removed and found to be metastatic melanoma. The biopsy also confirmed that I was BRAF wild type (negative) but positive for the NRAS Q61R mutation.

By the time I had a PET scan I could clearly feel 3 more small lumps under my skin which were confirmed by the scan to be subcutaneous metastases. The scan also showed showed nodes in my armpit and abdomen, and possible metastases in one of my femur bones and one of my adrenal glands. The worst news was 2 days later when a MRI showed multiple small brain metastases (largest 9mm) with haemorrhage and surrounding odema.

That was just over 2 weeks ago. Here in New Zealand we have a public health system and Keytruda is one of the drugs that has recently been funded, so I was urgently given a first 2mg/kg dose of pembrolizumab.

Almost immediately I had a response from the 21mm tumor in my armpit - it swelled, became sore and then rapidly shrank over the course of a few days. I also had similar responses over the next week from 2 areas in my abdomen and one of the lumps under my skin (subcutaneous metastases).

That would seem like a positive start to the pembrolizumab except that since my first dose I have noticed at least 10 new small lumps appear under my skin that look and feel exactly the same as my original subcutaneous metastases. And the two original lumps that have not been affected by the Keytruda seem to have increased in size. So I'm feeling worried that I'm only going to achieve a partial response at best to the Keytruda.

I'm also very worried about my brain mets. I have been asking (and will continue to investigate) whether I can access targeted radiation therapy for them as I am worried that they may be growing rapidly. I don't have any symptoms from them yet but given the rapid pace of my disease in other areas of my body I am worried that I they may cause me far more problems in the short/medium term than my other tumors.

Unfortunately the Ipi/Nivo combo is not funded in New Zealand although it might be possible to self fund the ipilimumab and add it to my Keytruda - this is something that I am going to ask my oncologist.

My next dose of Keytruda is due in a week's time.

If anyone has any thoughts or suggestions I would be very grateful to hear them. I think NRAS melanoma has a reputation for rapid progression and I am hope that given time the Keytruda might work - but all the new lumps are very worrying.

My best wishes to everyone involved in the fight against this terrible disease - Ashley

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Girlfromohio's picture
Replies 6
Last reply 6/20/2017 - 5:18am

I am currently seeing a Nurse Practitioner at a Dermatologist office. I have A LOT of moles, but have not had any (thankfully) turn out to be melanoma. My question is what do you do when you are uncomfortable about where and who is giving you care? This office is more focused on cosmetic dermatology. While I like the NP, I wish I was seeing a real doc. I have anxiety and worry they will think poorly of me if I call and say I'm switching doctors. Do you think they will care? Is it my right to switch? Or will it not even be a blip on their radar? I go there often and I worry it will look as though I'm a chronic doctor switcher. Thanks!

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Sharon93065's picture
Replies 6
Last reply 6/20/2017 - 10:38am

Hi, I am 70 years old and live in Simi Valley, So. California.

I have a Viking River Cruise booked and paid for Nov 9th.  Keep changing  my mind on canceleing it.

I had a melanoma mole taken off of my page in 1991,  Plastic surgeon took out a hung, it was Clarks type II.

In Feb i was sick, went to Dr and told her I'm going on vacation with my daughter and grandchildren next week, and i don't want any surprizes.  She called a week later while i was in Texas to say it looked like I had pneumonia, and prescribed antibiotics.  When i got home and several weeks later I read the xray report, it said pneumonia or lung mass.  Well i had a physical and another xray and it said lung mass ct scan recommend.  Then  Petscan. I 'lighted' up.  Lung, lymph nodes in chest, abdomen, groin, armpit,  and a large lump on my back that i had thought was a fatty tumor.  CT guided needle biopsy from lump on back came back melanoma.  What we thought was lung cancer was  metastatic melanoma.  I am still in shock. Everyone else is more upset than i am.  Maybe because I'm just  not ready to go see God  yet.

After doing nothing but reading and googling for weeks until our first appt with oncologist, Dr Wang, Kaiser Woodland Hills, said.  "Not curable, but promising results with Immunotherapy."  I'm glad  I bring my daughter to my visits because she remembers everything he says.  On second visit he said bood news, I tested positive for the Mutant Gene.  So after 4 rounds of Opvido, Yervoi 3 weeks apart, I will be eligible for Targeted Therapy.

I've had my first treatment and no side effects, waiting for the shoe to drop.  Will it be  bad after the 2nd and 3rd?  I've read how everyone gets so sick they are hospitalized???

My cousin was at UCLA and was talking to a melanoma patient, that was swollen  up and had autoimmune disease from the treatments, but was cancer free!  And he had many tumors.

I had booked a Viking River Cruise to Paris for Nov 9th wondering if I should cancel?  Was everyone able to do the 4 treatments?  4 treatments of Yervoiand Opdivo, then continuing with Opdvio.

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