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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Sharon93065's picture
Replies 5
Last reply 8/19/2018 - 4:52pm

I received my last petscan results.

" Stable PET/CT scan without any evidence for residual/recuttent metastatic malignanc.  There are no new findings noted."

WOW!!  Does this mean I am NED?? 

He said i am still Stage 4.

First starting getting tested approx. 1/2 yr ago.  Lung mass, tumors in groin, chest, armpit, by pancreas, lower back.  Ahd they are not immieasurable according to precious scan.

Jan 2018 after 5 months of prednisone to brink liver numbers back to normal he put me on 1mg of Prednisone.  I asked what success rate he has seen.  He said "you are the first!"  So he is please with the findings with 1mg Opdivo.  Will continue treatment.

I am a believer and am thankful for all the prayers from my friends, their churches, Bible studies etc.

Thankful for this forum for help and glad to give news back!

Sharon

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Rncab218's picture
Replies 14
Last reply 8/19/2018 - 1:01pm

Hi,

posted a month ago when I was diagnosed with a local recurrence of melanome 9 years after initial diagnosis.  Had unknown primary, two large lymph nodes removed.  Did leukine for ten months, no further treatment.  Now have had local recurrence, left arm and still cannot decide if I should do Nivo, tested BRAF negative.  Spoke with three oncologists at two major center in NY.  One leans toward watch and wait with scans every six months, one recommends nivo for one year, the other one gave me information but not leaning either way, its my decision.  So, I ask, any of you have done this treatment?  How tolerable is it?  Any of the major possible side effects occur?  Have you remained disease free?  Thank you so much, I need to make this decision soon as its already been two months sicne my recurrence.

 

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MMH's picture
Replies 3
Last reply 8/19/2018 - 12:40pm
Replies by: UBContributor, MMH, MarkR

I was recently diagnosed as Stage 1 spitzoid melanoma.  I have been advised by my doctors to keep an eye on my lymph nodes, particularly the ones in my right armpit.  Perhaps it is psychosomatic, but I have random pains in both armpits, but feel no obvious lumps or bumps.  Is there a better way to monitor for this, or signs to look out for that could help?   

MMH

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Hello
I have been having an acral mole since puberty; it means 15 years ago. I have always thought it was something normal until i have started learning about skin cancers and stuff.
After making research on the internet it seemed to me like an acral nevus or probably a dysplastic nevus (mainly because of its size 10 mm)
As far as i remember, it never changed since it had appeared and it never caused any problems.

Thanks

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jjk17's picture
Replies 6
Last reply 8/19/2018 - 9:34am

Hey everyone!

Once again, looking for advice. Today was a scheduled treatment day. I have been on Nivo for 7 months now. This whole time my labs have been perfect no issues what so ever until today. My liver counts were SKY HIGH. Last month they were normal. So obviously no treatment.

Basically trying to figure out what our next steps are. Repeat labs on Monday. Anyone expierence this...? Why just now?

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Savymoo23's picture
Replies 11
Last reply 8/18/2018 - 11:20am

So I got a call from my surgeon tonight and he said that my biopsy came back under my arm as negative and that was really good news. I know it’s good news but that’s basically all he said and hung up. I’m kind of at a loss? Is this the end? Do I not need more testing? I just feel like I don’t have all the answers? Can it still spread with a negative lymph node biopsy? Thanks guys 

Savannah Price

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Replies by: Kfred, melanomamafia, Anonymous

Milagnant Melanoma

Histologic Type: Nodular

Thickness: AT LEAST 3.42 mm

Clarks Level:AT LEAST IV

Growth Phase:Vertical

Ulceration: Not Identified

Mitotic Rate-2-3/mm

Tumor  Infiltrating lymphosites-Non Brisk

Pathologic Stage- AT LEAST pT3a

Margins- extends to involve the base of the biopsy

Breslow depth -pathologic stage may require revision on the excision

all other catagories are listed as Not Identified.

Microscopic Descrition: Atypical melonocyctes are present within the epidermis and papillary and reticular dermis


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vickiaa0529's picture
Replies 13
Last reply 8/18/2018 - 12:53am

Hi

Does any one the odds of reaching remission at Stage3

I am not sure what I am going to be staged at? I am having more nodes removed on April 4th. I am really scared. It seems like everyone's melanoma keeps coming back. I have not heard a lot of positive stories.

Will I have a normal life ever again? I am scared for my husband and family.

Thanks

 

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nicolec's picture
Replies 3
Last reply 8/17/2018 - 5:44pm
Replies by: Anonymous, nicolec, Bubbles

You may remember awhile back I questioned a complete removal of my lymph nodes (I'm 3a). I had a lymph node removed from both sides of my groin during my SLNB that had melanoma. I went to Mayo last month for their opinion, and they recommended not removing lymph nodes. They did recommend that I have an ultrasound of my lymph nodes in my groin area every 3 months for 3 years. I had my first one yesterday.

I got the results of the ultrasound today (I truely thought it was just a baseline) but one of my lymph nodes may be "reactive or involved with metastatic disease." They might recommend an ultrasound guided bioposy or FNA (fine needle aspiration). My onocologist is on vacation until next week, so I don't know what his plan will be.

If melanoma is in another node, does my stage change? Does this make everything a lot worse?

I'm on a year of Opdivo. I have had 2 rounds(1st dose was the 2 week dose and dose on Monday was the monthly dose).

I'm trying to stay positive throuhgout this journey and I know many people have it worse. I'm thankful I have treatment options and so far side effects to the Opdivo have been minimal. But sometimes, like today, I find it difficult. Maybe this isn't that big of a deal-but soemtimes it seems like continuious bad news, and just when I think I'm holding it all together, BAM.

Nicole C
3a

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AN8's picture
Replies 6
Last reply 8/17/2018 - 8:43am

Any suggestions for sun protective clothing? I see various name brands such as high end Columbia and Patagonia ($$$) to Walmart brand called Vapor.  

As far as sunscreen, I use Blue Lizard and Mineral Republic (both available at Walmart). They are similar to applying zinc oxide ointment...really white and thickish, but you don't smell like sunscreen which is nice when you apply it every day.    Any other suggestions that don't break the bank?

Lastly, those with outdoor hobbies (mine and my daughter's - coaching competitive softball), do you give it up?  Continue with precaution?  Daughter is at increased risk because of me and the fact that she had a benign atypical spitzoid removed back in May. It will probably be the smart move to retire for me - alot of time in the sun on the weekends.  For her??  What is your advice to your kids who have not had melanoma, but share the same activities as you and look where you are?? Risk you life to live or don't live your life to save it?  Little dramatic but doesn't that sometimes feel like the question?

 

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Kfred's picture
Replies 9
Last reply 8/16/2018 - 9:57pm

My husbands surgey is Scheduled for in the morning 8/16/2018.

There are no surgical melanoma specialists in my area. Because the mass is fairly large, at least 3.45 mm and staging is at Least Pt3a, They feel it has to come out now and we should not wait to search for a specialist. I trust this surgeon but am wondering if we are making the right choice.

The pathology report came in this Monday. Dermotolgist had us in the surgeons office yesturday and surgey tomorrow. I like the aggressive approach they are taking, but it scares the hell out of me that they are moving that fast. Any suggestions? or at least positive thoughts for me!

Thanks,

Karen


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Anonymous's picture
Anonymous
Replies 4
Last reply 8/16/2018 - 9:12pm
Replies by: jrtufo, Amanda_3784, Anonymous, miaka618

Stage IA, left temple, WLE in May.

Feel a hard, very small lump directly under left ear / behind jaw bone. My jaw has begun to click when I open it - I thought it was just TMJ from years of orthodontics.

My doctors never feel directly under my ear, they've always felt for lymph nodes (under jaw, neck, behind ear in scalp, armpit, groin) but never have felt directly under my ear. 

Anyone who has had experience with parotid mets or tumors, can you tell me more about what that felt like?

Should I bring it up with my doctors?

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Mksews's picture
Replies 7
Last reply 8/16/2018 - 9:02pm
Replies by: jrtufo, Mksews, marta010, Anonymous, MikeP

My husband, age 67,was originally diagnosed in Sept.2017 with a 5mmdeep ulcerated lesion.lt was surgicaly removed and he went thru the snb and found it had not gotten to the nodes. He was staged at 2b with the most agressive tumor class.  He did opdivo for about 6 months and then noticed a small lump on the original site on his scalp.  It was tested and removed and it was a melona again this time inside of a lymphnode.  The dr., Dr. Lemming in Cinti.  then said he was stage 4, took him off the opdivo because it hadn't worked.  More testing was done on the tumor and it came back BRAF positive and he said the opdivo was not the right drug. He is now on Taf-Mek and feels awful. He sleeps alll the time, doesn't have an appetite and occassionally runs a fever.  Are all these typical side effects.  We just didn't expect him to feel so bad. The opdivo didn't seem to make him feel anything more than just a little tired.  How long do people usually take this for and do you begin to feel better after awhile.  We were just wondering if this is the new normal.  The dr. has not been specific about what we can expect.  Thanks! mk

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Anonymous's picture
Replies 17
Last reply 8/16/2018 - 6:02pm

Hello, I am in the UK and would like to ask a question. My husband had stage 0 melanoma removed from his leg two and half years ago. This year his health has been a bit off including a 7 week bout of cold/cough/flu type illness.

I keep an eye on him and use the Internet a lot for guidance. He’s had extensive blood tests to the point where the doctor told him I don’t know what is wrong with you. Basically they can’t find a reason for his low immunity and general malaise.

I have read about lymphoma but my husband has never discussed this with his doctor. He doesn’t have a lot of the lymphoma symptoms and I am careful not to put things to him that will mess with his head. The main impact of his stage 0 to him has been mental, the whole situation understandably messed with his head. At 50 years old for the first time in his life he was faced with something out of his control.

The reason for my post is he recently showed me a ‘spot’ under his arm. I carefully felt it and to me it feels like a lump under the skin about 1cm in size. Two days later he still refers to it as a spot which is slightly tender and he is waiting for it to go away...

I know there will be people out there who share my concerns and I would like to hear from you as he has asked me to respect his decision to wait for a week to see if it goes away. I feel bad now as I feel I have started to push him towards the thoughts that messed his head up last time.

thanks in advance for your help 

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AshleyS's picture
Replies 20
Last reply 8/16/2018 - 3:18pm

Since being upped to Stage IV nearly 5 weeks ago, I've done a lot of research concerning alternative medicine and diet. I've also had a lot of people reach out to me who are melanoma survivors and other cancer survivors. It seems like all of them made drastic changes to their diet. Many were also treated holistically. What have some of you done concerning alternative medicine and diet? One problem I am having is contradictory opinions and research. It makes it difficult to know what to do.

once again, I'd appreciate anyone's advice! Thanks!

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