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
Replies 8
Last reply 12/30/2016 - 4:41pm
Replies by: Anonymous, ida_aud, Janner

Hello Everyone,

I have two questions in regards to this new journey.

First, I will talk about my diagnoses, I am 22 and was recently diagnosed with stage 1a melanoma with 

0.23mm in thickness

ulceration: absent

Regression: present

deep margin: negative

peripheral margins: positive (have already had the WLE procedure and got the all clear that got everything)

Mitotic Rate: 0

Microsatellitosis: Absent

Lymph-Vascular invasion: absent

Lymph nodes: N/A

The mole that was cut out was on my upper trunk above my scapula near my shoulder, I am almost certain this was caused by a nasty blistering sunburn I had as a child. I have known about the dangers of melanoma way before this diagnoses, and before this mole was biopsied, I have had 15-17 other moles biopsied before this, all have come back mildly atypical at the worse. With this being said, my question in regards to my recent diagnoses is how low of a risk is this mole? I know that my risk falls somewhere as the ten-year survival rate of stage 1a is 95% but just wanted to hear some others that can add to these findings. I am pretty scared but am ready to move past this and am glad that I found it early. Is there any advice anyone can give for this diagnoses and how to deal with it?

 

Second question:

I am also worried about now having another melanoma on me right now.. I wanted to see if anyone could give any advice on how common it is, if it is at all to have two primary melanomas on your body at the same time. I have read that my risk for a new primary is around 4-8% but wanted to see if anyone could point me to studies or from own experience on if they have had two primaries at once or if they occurred later in life. Thank you for reading this, and please let me know your thoughts. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/30/2016 - 3:35pm
Replies by: triciad, Bradley75, MaPerny

Does anyone have experience with metastasis to spine vertebrae? What is treatment?

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/30/2016 - 1:00pm
Replies by: cancersnewnormal, Ed Williams, Anonymous, Janner

In sept i got sick really bad with a cold. In early oct i was getting headaches and lightheadiness. I went to see a doctor who diagnosed me with viral sinusitis and said it would get better.

I had a pet/ct scan full body in nov that was all clear.

As of a few days ago i was having same symptoms. Went to dr and he gave me a mri of brain cause of cancer history. My brain came back clear (no tumors) and the mri stated thickening of mucous in sinus's. Ive had a ct scan in july and oct and both said sinus disease seen.

Could this be mucosal melanoma? Or is it just a sinus infection. Im going to see a ent soon. Sorry i have really bad anxiety ever since i was diagnosed. Ive had this since oct 5th 16.

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/30/2016 - 11:51am

My elderly father was diagnosed with Stage IIb melanoma in October 2015 which was removed with a WLE.  In October of 2016 he was diagnosed with metastatic melanoma which had spread to his lungs, sub-qs and brain.  Doctors performed a craniotomy on one tumor and SRS on the remaining brain mets and started him on Keytruda (2 infusions to date).

Things were going well until about a two weeks ago when he fell due to weakness/numbness on his left side.  It has since been revealed that his brain mets have continued to grow, they are hemorrhagic and there are new ones.  The conclusion is that this treatment plan failed and now his only options are (1) whole brain radiation and a trial of ipi/nivo combo or (2) palliative care with just a few weeks to live.  My father has expressed that he wants to keep on fighting and I will support him, but his oncologist has strong reservations against WBR as there are many side effects/personality changes which impedes on quality of life.

Does anyone here have experience with WBR?  Could it extend his life by any amount of time? I think part of all of our shock is how quickly this has happened - from seemingly fine in September to now being told there is only weeks left - and that has left all of us wondering if there is anything more we can do.

Thanks.

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Everymoment's picture
Replies 8
Last reply 12/30/2016 - 11:39am

Hi,
Does anyone have a good recommendation for a melanoma treatment specialist? I was thinking of going to Duke or Chapel Hill. It looks like my disease has progressed.
Thank you.

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Casitas1's picture
Replies 11
Last reply 12/30/2016 - 8:35am

Hey all, six month scans after becoming NED in July were all clear today! Been off treatment since Oct. Feeling great except for joint inflammation which i see a rheumatologist for on Fri. Happy New Year to all! And to all those battling the beast I think of you often and wish you well.

Paul

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casagrayson's picture
Replies 2
Last reply 12/30/2016 - 1:00am
Replies by: casagrayson, geriakt

Has anyone had an update from Juan or Stacey?

Strength and Courage,

Susan

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Hriggenbach's picture
Replies 3
Last reply 12/29/2016 - 9:17pm

I had snb and wle my dr just called saying one lymph node tested positive but the melanoma is encapsulated she scheduled my for Ct and MRI as well as surgery to remove the rest of the lymph nodes. Is it good it's in only one??

My original pathology report ...Ohio state university hasn't posted latest report yet 

Ulcerated invasive spitzoid malignant melanoma 

Breslow Depp at least 2.3 MM Clark's level IV
ulceration present
Focal angiolymphatic invasion present
No neurotrophic invasion present 
No microsatellitosis present 
There is a brisk host inflammatory response 
Note: The breslow depth maybe deeper than reported as the lesion is seen extending to the base of the biopsy specimen. The AJCC staging for this lesion is PT3B Pnx, stage IIB. The mart-1 strain efficiency highlights these meanocytes with the PHH3 highlighting Mitotic figures

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_Paul_'s picture
Replies 9
Last reply 12/29/2016 - 8:33pm

It has been quite the ride. Turns out my intestines were severely impacted with weeks of crap from the painkillers I had been receiving. And my pain was increasing until I ended up on Dilaudid drip. I could not eat for a few days because of excessive bloating and nausea Even trying to swallow oral meds made me heave.

Opiates bind with receptors in the intestines and everything stops. After trying several types of laxative, the one that got the ball rolling is an injection that prevents the opiates from binding to the receptors. Kinda like pathway inhibitors.

However at least it prepared me for the nausea to come from the high dose IL-2, starting tomorrow.

The TIL infusion gave me extreme shivers which required wrapping me in warm blankets like a South Park character, cranking the heat in the room, and 25ml of Demerol. This n spite of a yield of only 15 billion cells, ten times less than I hoped for.

My temperature spiked to 102, but all in all a walk in the park compared to the days of not eating and the from the extreme bloating. 

The last two days my appetite returned and I have been mercilessly cracking jokes with the nurses. Some make better victims than others. Heh, heh, heh.

Tomorrow is the main event. I will try and keep posting.

- Paul

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sister of patient's picture
Replies 10
Last reply 12/29/2016 - 6:45pm

Just another quick update on my sister, Leisa.

Posted a few weeks back that latest thoracic CT showed tumour shrinkage everywhere and no new progression. Now we have a new brain MRI and the results are excellent - "There is no evidence of abnormal enhancement within the brain parenchyma, leptomeninges or pachymeningeal. The previously visualized enhancing lesions within the bilateral cerebral hemispheres have completely resolved (in the interval)." Yay!!!  This - after brain mets "too numerous to count" and WBR as the only option - is phenomenal. 

I am so grateful to the "gods that be," there just aren't any words to describe how I feel, particularly because six months ago, it was doubtful she'd make it this far and any chance of ever seeing NED seemed impossible (there are only two organs in her whole body that were clear - heart and colon).

I didn't want to even "dare to hope" but I sure am now. She still has a long way to go and is only approaching the halfway point of Nivo infusions (started on ipi/nivo combo but had only two infusions before the ipi attacked her retinas) but we have lots of reasons for believing that NED is in the future!

With much gratitude, wishing everyone on here the best possible outcomes and a hopeful, healthy 2017!!

Barb 

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Kenkussions's picture
Replies 13
Last reply 12/29/2016 - 3:46pm
Replies by: Kenkussions, Anonymous, Michelle820, Janner, jennunicorn, debwray

Hello everyone,

I was just diagnosed (12/19/2016) with Melanoma In Situ on my neck. I have a family history of skin cancer (both my father and grandfather) however, I have found out that all of theirs came back as BCC or SCC not melanoma. I go in for a WLE on 12/27/2016 and am fairly nervous as I know I will be awake and the spot they are removing is right behind my ear (I feel like I will hear everything being cut/ cottarized. Apparently they will leave the wound open for 2 days for testing then if all clear margins I go back in Thursday 12/29/2016 to get sewn up/ more removed if not clear. Those two days do not sound very fun but after researching online and on this forum I realize I just have to get it done. I now know that the "in Situ" is the best possible diagnosis if melanoma is present but I am very fearful that there may be more on my body that we are not finding. Below is what the pathology report came back as any insights would be appreciated. I am just scarring myself reading all of these stories of how often melanoma tends to come back with a vengeance. 

Diagnosis:

Left occipital scalp-

Melanoma in Situ

Note: There are features of a dysplastic nevus as well. Pathologic stage: pTis.

Clinical Data:

Dysplastic Nevus

 

Gross Description:

Received in formalin labeled with patient's name is a tan shave biopsy measuring 7mm x 7mm x 1mm. Specimen submitted in 1 cassette, 2 pieces.

Microscopic Description:

There is a proliferation of atypical melanocytes present in the epidermis with irregular nests of melanocytes aggregated at the dermoepidermal juntion and solitary melanocytes present within the epidermis. The process is confined to the epidermis. These changes represent primary malignant melanoma in situ.

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Jubes's picture
Replies 6
Last reply 12/28/2016 - 11:32pm

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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Anonymous's picture
Anonymous
Replies 8
Last reply 12/28/2016 - 11:20pm
Replies by: tag4128, arthurjedi007, Anonymous, Mat, RJoeyB, Janner

What does bone tumor pain actually feel like?

I have a history of melanoma with 1 recurrence in the past 2 years and have been having increasing pain in my right hipbone/pelvic area, sometimes it radiates slightly into my back, sometimes a bit down my right leg, but mostly it seems to be right at the hipbone.  It has been gradually increasing for a few months but has just gotten really bad the last few weeks, so that it went from occasional and more of a dull ache, to constant and sometimes almost unbearable, though it will reduce back down to a dull ache, but now it is always there. 

I am going in for a CT scan but I can't seem to find much on what bone pain from tumors might feel like.   Melanoma lesions can be small, so I am not sure how aggressive I should be in following this up if the CT doesn't show anything.  Should I ask for a PET CT?

Does this sound anything like bone tumor pain to any of you?

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Aloha14's picture
Replies 0

I had the groin ultrasound today to check on the lumps~I don't just have one seroma I have three! All this for removal of two lymph nodes. I see the surgeon in the morning to find out if the largest one can be drained. The smaller ones I could deal with. 

Plus, had my Pet Scan today and made it through without the Valium. The wrost part seemed like getting the saline and glucose stuff into my veins~I could smell and taste it. 

Hopefully, the stitches in my lower leg come out tomorrow. 

Thanks to all for the support

 

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