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 1
Last reply 4/2/2015 - 9:28pm
Replies by: Rocco

Hi all,

We're in the early stages of planning a Twitter chat about immunotherapy and its use in treating melanoma. We will be partnering with another cancer research/advocacy group and an oncologist who specializes in immunotherapy. What questions can we answer? What do you think would be the most helpful information for people with melanoma to know about immunotherapy? We value your input so please let us know! You can leave suggestions in the comments or email me at LSmithDyer@melanoma.org. THANK YOU!

Lauren - MRF

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Jager001's picture
Replies 8
Last reply 4/2/2015 - 1:12pm
Replies by: mandican, Janner, Anonymous, Jager001, lhaley

Here's what I got back today....

 

Compound nevus w/ architectural disorder and focally severe cytological atypia.  The lesion extents to the lateral and deep margins.  This lesion has severe atypia and it does not appear that it has been completely removed, conservative excision to ensure complete histologic evaluation to exclude an adjacent melanoma is recommenced.  Histologic sections are of skin w/ a nevomelanocytic lesion.  The lesion has junctional and intradermal elements.  Junction cells are present singly as well as in nests.   There is a lentiginous proliferation of melancytes along the dermoepidermal junction.  These cells have focally severe cytolgoic atypia.  In the dermis are nevomelanocytes w/ maturation.  Also, in the dermis there is a mild inflammatory cell infiltrate composed predominantly of lymphocytes and there is fibroplasia. 

 

What does this mean?

 

Thanks!

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Brigitte's picture
Replies 3
Last reply 4/2/2015 - 1:05pm
Replies by: mandican, Brigitte, Janner

I had a shave biopsy a few weeks ago with the diagnoise being a compound nevus with dysplastic features.  The biopsy also said that junctional changes are focally advanced, perhaps indicative of progression, such that a conservative excision is recomended. I have an appointment to get it done next week. My question is, since my shave biopsy didn't detect melinoma am I in the clear ? Can a shave biopsy give a false negative or miss it and is there a chance this biopsy may detect it? Thank you for your answers. Im trying not to be nervous. 

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LauraJean's picture
Replies 6
Last reply 4/1/2015 - 11:14pm

Hi I was just wondering how many ladies here have been diagnosed with breast cancer after melanoma. Doing radiation now for stage 1 breast cancer. First melanoma was in 2007 stage 2, then another in situ in 2013, now breast cancer. Is this common? Thanks

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BrianP's picture
Replies 6
Last reply 4/1/2015 - 2:28pm

Some of you might remember the thread from last July talking about living with stable disease. 

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/living-stable-disease-g-samsa#comment-77579

This article in Psychology Today reminded me of that thread.  I thought it was a really well done article and is so applicable to many of us on this forum.

https://www.psychologytoday.com/articles/201503/the-new-cancer-survivors

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/1/2015 - 1:52am
Replies by: Make2DayCount, Anonymous

I'm getting small bits of information from my mother regarding my father's diagnosis.  His melanoma is now in his lungs so we are waiting on pathology so they can come up w a treatment plan.  Is there a separate support group for ano-rectal melanomas?

Thank you.

 

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Jubes's picture
Replies 5
Last reply 3/31/2015 - 2:28pm

Hi all

just wondering what kind of pain bone met pain feels like. I have lung and chest Mets and for weeks now have a sharp pain in my back when I breathe deeply ( and pain most of the time there. It's more like the shoulder blade area) not unbearable but so it hurts to turn over in bed. I mentioned it at my last one appt but it was a new dr and he said it was probably just muscle pain. I have had it now for at least 6 weeks and won't see the dr till may. So just panicking a bit. Could it be muscle soreness from the pembrolizumab I am  on?

btw really enjoying all the posts from Brian and Ed etc:)

tks anne-Louise 

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Cee's picture
Replies 6
Last reply 3/31/2015 - 9:00am
Replies by: Cee, Eileensulliv, Julie in SoCal, Anonymous

When you have a recurrence in the form of a bump under the skin, is it something that popped up very quickly or something that began very innocently enough that you watched it until you felt sure it was something to be concerned about?    Did it begin as a red circle and slowly become a bump beneath the skin and change colour?

If it was something that started out slowly, how long before it was at a stage where you were definitely concerned enough to see a doctor about it?

Thank you .

Cathy 

Stage 3a

Cathy

Stage 3a

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GAngel's picture
Replies 25
Last reply 3/31/2015 - 5:48am

Hello all, I am fairly new to the site.  I have gained valuable information from all of you so thank you for taking the time to share your stories with others. My husband, Rudy, has been on Zelboraf since mid March 2013, after being diagnosed with Stage 4, with mets in his liver, the previous month.  His tumors have shrunk dramatically, so we are very happy with the results. The only problem he had was the with the severity of the side effects, which were so debilitating that they reduced his dosage to 3 pills x a day and an every other week schedule. His last visit to the oncologist a few days ago revealed that he was still responding positively. Despite the great results we opted for the new treatment because  his oncologist advised that the side effects are less severe, and the results better, so this is our hope.  I was wondering if any of you are on the combo and if so how are you doing?

Thanks for reading and I will keep you posted on my husbands progress! I am praying for all of you who are fighting this dreaded beast, you are true warriors, may the Lord be your strength through it all! God Bless you and yours.

Sincerely,

Gina (wife to Rudy)

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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rick1981's picture
Replies 2
Last reply 3/30/2015 - 9:35pm
Replies by: Bubbles, Ed Williams

Hi all,

My wife is taking Dabra/Trametinib (re-challenge after they worked for 5 months up to december) - now in combination with Keytruda. So far it seems the targeted therapy worked for the "new" brain mets (see earlier posts) but the immunotherapy itself doesn't seem to do much (5 infusions so far). 

On Wednesday we'll get a new PET/CT scan and possibly move to Yervoy if the Keytruda didn't do enough.

But I'm writing now because more has been published about immunotherapy plus targeted therapy.

http://melanomanewstoday.com/2015/03/25/ucla-researchers-develop-effecti... (Dr Ribas)

Kind regards,

Rick

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Cathy.Welch46's picture
Replies 6
Last reply 3/30/2015 - 3:07pm

has anyone else had to experience this and what treatments have you tried.  Do you know someone who had and did not  make it? 

Stage IV for five years now.  Enjoying life to the fullest

Cathy

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BrianP's picture
Replies 4
Last reply 3/30/2015 - 12:47pm
Replies by: BrianP, Ed Williams, Bubbles

A little background. I'm a pilot and unfortunately due to my stage IV melanoma dx in May 2012 I lost my FAA medical. Last week marked my one year anniversary of stable disease. I was told by a doctor that one year of stability and no new mets would be the absolute minimum the FAA would accept if they were to approve my medical. I think it's a long shot at best but I feel great and I'm optimistic about the future so I thought I would go ahead and submit a request to get my medical back. The worst that can happen is they say no. What I wanted to ask is if anyone has seen any data or charts on Anti-PD1 drugs which gives an indication that if you make it to the one year mark your chances of recurrence are greatly reduced.  Due to the drug being so new I’m not sure the data is mature enough to be able to draw that conclusion.  The only thing I’ve seen that somewhat shows the durability is from a Dr. Hodi presenation (page 8 lower left).

http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

Thanks for input anyone might have.

Brian

 

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Eileensulliv's picture
Replies 8
Last reply 3/28/2015 - 6:16pm

It's been an interesting week. Since a week after my first infusion of Yervoy and Nivolumab at Hopkins, I was getting intermittent high fevers, nausea and vomiting, and a few other minor side effects. My onc said we are going to delay my second treatment until I get rid of the fevers. Then last week they became not so intermittent at all... Ended up in my local ER Thursday night, and sent home after some fluids, anti nausea meds, and Tylenol. Friday morning I wake up with 103.3 fever and vomiting, so it was off to Hopkins I went. I have never stayed in a hospital before, so I was a bit nervous, but their staff and nurses are exceptional, and made me feel right at "home"! 

I pretty much stumped the doctors as to why they couldn't get my fevers and nausea to go away. They tried the beta blockers again, and stopped after two days. They tried three days of IV antibiotics and no change. Every test and ct came back as normal. So they chalked this one up to a side effect of treatment, and started me on steroids (on day 2 of antibiotics) and just like that, I'm on the mend! The last night of fevers was no fun... 103.5 most of the night, and nurses packing ice packs all around my body every half an hour... Minor bump in the road, and a week's "vacation" in a fantastic hospital. 

However, my onc says he is extremely hesitant about keeping me on the trial, as he does not want to put my body through this again. He is thinking we will just stick to the Nivolumab, but I will meet with him Monday to discuss my options. I would prefer to stay on the trial, but I do know that Nivolumab alone is a very good option. Now that I'm feeling better than I have in weeks, I'm just ready to get this show on the road again!

Eileen 

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Anonymous's picture
Replies 8
Last reply 3/28/2015 - 2:07pm

My friend aged 62 years was diagnosed with metastatic malignant melanoma in April 2014. HPR showed malignant melanoma of sole with invasion of reticular dermis, tumor thickness upto 3mm no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 ingunial lymphnode ECE. She underwent surgery in May 2014.

 

The doctor opted for observation. She was doing fine till Oct 14, when she complained of imbalance and right lower limb weakness.The MRI showed multiple intraparenchymal lesion scattered bilateral, frontal, parietal,left occipital region largest measuring 2.5x2.3 cm. She received external beam radiotheraphy to whole brain from 27/10/14 -6/11/14. PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes. She was doing completely fine . She one day complained of pain in both knees and had difficulty walking. We had to support her even to go the restroom. Her 6th chemo was scheduled on March 2 . We went to the doctor and informed him about this. He delayed chemo for 1 day and gave her meds like mannitol etc. Then continued with her chemo and said the pain is not related to lesions in brain, She got discharged on March 7. She came back and was not able to get up herself due to weakness. Next day she was in a hazy sort of situation, taking time to understand. Her right leg and right arm had become very weak. We rushed her to emergency the next day. The doc ordered an MRI of the brain. The reports showed multiple intraparenchymal well defined nodular lesions scattered in frontal ,parietal,left occipital regions, largest measuring 3.1x2.8 cm in left frontoparietal region. Moderate perilesional edema is noted with effacement of frontal horn and mild midline shift of 3.5 mm towards right.

They asked us since it is last stage and the problem has reoccured, there is little hope. Now they would be doing stereotactic RT from 12/3/15  for 10 days but arnt hopeful if it would help. They say she has just 3-4 months to live. In the meantime her condition has improved slightly . She is able to get up on her own and there is less weakness in right arm and leg. Her all other reports are good.

Just 3-4 months to live when she has shown improvement..how is this possible? Is this illness so dreadful? Is there no chance of survival in case of brain mets? Looks like my world has come to an end after hearing this..can anyone please help? Is there any ray of hope.

Stay Blessed!

 

 

 

 

God bless you

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