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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CCJ's picture
Replies 2
Last reply 3/24/2016 - 4:59pm
Replies by: CCJ, Janner

Have other people found that the biopsy results take a long time to come back? Nearly 2 weeks for my husband's  initial diagnosis and waiting for WLE results... on 8 days now. 

Anyone know why this might be?

Thanks

Carolyn 

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Randy437's picture
Replies 8
Last reply 3/30/2016 - 2:39pm

My CT yesterday was clear (except for old man things not related to cancer smiley) and my brain MRI of several weeks ago was also clear.  I'm stage IV (mets to both lungs, brain and intestine) and have been NED since January, 2010.  Why me?  I don't know.

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Scooby123's picture
Replies 12
Last reply 3/25/2016 - 10:09am
Replies by: Scooby123, Mat, Momofjake, Anonymous, BrianP, Bubbles, jennunicorn, Gene_S

Well after waiting 4 weeks for results my results was liver , lungs still stable but found 4 MM. spot on brain.

going to have radiotherapy next week to treat it., but no other treatment . I think due to my lungs liver stable from ippi, and they treat head different . 

Please advice , experience on head tumours and radiotherapy treatment. Been told cannot drive, was planning a holiday with my daughter before she goes to uni in September.

keep well all

scooby123❤️

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Lin P's picture
Replies 5
Last reply 3/27/2016 - 12:35am
Hi!
First of all, I apologize my poor English. I am not a native English speaker but doing my best.
 
I am here for my mom.
She is 50yrs old Asian woman and was diagnosed with Melanoma stage III on Christmas eve in 2015. Its undesectable because it's right next to bunch of blood vessels in her neck.
 
My mom actually visited a dermatology about 10years ago suspecting a rash on the back of her neck is melanoma. But the doctor said it's just not melanoma, and simply removed it with a laser. Now, 10 years later, it turned out that was melanoma.
 
Now our goal has been to reduce the amount and size of the tumors on her neck lymph nodes so she can undergo an surgical operation.
 
 
 
 
<The path we have followed - from Jan 2016 to March 2016>
 
1. She was on a little bit lower doses of Keytruda for the first 6 weeks
   - Keytruda worked really well. 
 
2. She got 24times of tomotherapy done after Keytruda for 5 weeks. its been only 2 weeks since the last tomotherapy and we are still waiting for the final result.
 
So as the result of Keytruda and tomotherapy, about 80% of the tumors are gone (in 6weeks)
 
3. Her oncologist said Keytruda may no longer work because the cancer tissues left are too dense. She recommanded my mom to switch to Zelboraf for a month and see if it works. So my mom is now on Zelboraf(10 days so far) and If it works well she will probably be able to have surgical operation.
 
 
 
 
 
Because melanoma is very rare and unfamiliar disease in my country, there is no many highly experienced doctors, no much reading material available for patients, and no patients forum like this.
I've been translating the posts into my language when I have free time so my mom can read and feel she is not fighting alone. We are inpired and learning a lot here on MRF. So thank you all :)
 
I will keep undating on this thread.
 
I wish you and your family all the best.

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Mnabean's picture
Replies 3
Last reply 3/24/2016 - 3:13pm
Replies by: Mat, Bubbles

My friend was diagnosed stage IV in December 2015. Started opdivo/yervoy combo in Jan and had to stop after 2 treatments. She had to have fluid drained from the heart cavity and still has drains. Her physician said there was nothing more he could do. They never had a 2nd opinion. I pushed for one and they went to Cleveland Clinic and again were told nothing more they could do. She is BRAF neg. They didn't even suggest a MEK or Keytruda. I would love for them to see someone in NY or TX but I don't them to be dissappointed again, but I want to make sure all options have been considered. She is weak, but as far as I know, it has not metasized to liver or brain. Any suggestions would be amazing! 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/25/2016 - 1:44am
Replies by: Anonymous, Rocco, BrianP

I had a melanoma in situ removed by slo mohs surgery a year and 1/2 ago.  All margns were clear and have been going for my by yearly skin checks.  About a month ago,  I wound up in the er with severe stomach pain.  They did a abd CT and found nothing in my stomach, but nodules in my lungs.  They sent me for an additional full chest CT which indicated more nodules.  I saw the lung nodule specialist today and the "team" is convinced it is melanoma - awaiting biopsy.  I have no other systems, blood work is fine and no lymph nodes that were in the CT are enlarged.

I find this incredibly hard to believe and am terrified!  I am a healthy active person and not ready to give up on life

Anyone else have this experience?

 

thanks

 

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lastexit470's picture
Replies 14
Last reply 3/27/2016 - 9:19am

Hi, my wife was diagnosed last week with stage 3 in her right groin lymph node.  She can feel it, which is why she went to the doctor to get it checked out.  I believe it was 7 cm.  Is that big?  Woudl this be 3c?  They are going to remove the lymph node and everything surrounding it.  Is this correct and what do they usually do following the lymph node removal?  Any suggestions?  She is 36.  The PET scan showed it was contained so far to that one area of her body.  Thank you in advance.  Doug

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/24/2016 - 11:07pm

I need some input. I'm worried about biopsy I had five days ago. Nurse said they didn't get a good stain and had to send it somewhere else. Does this mean it's probably cancer. I've had the mole for years and it hasn't changed but he did a punch biopsy just to check. Could it be something else or should I prepare myself. I have obvious anxiety over this. Any help appreciated ! Thanks!

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DZnDef's picture
Replies 6
Last reply 3/24/2016 - 7:57am

Articles like this confuse me.  Are we supposed to avoid the sun or get more sun to increase our vitamin D levels?

http://www.cancertherapyadvisor.com/skin-cancer/melanoma-poor-outcomes-lower-vitamin-d-levels/article/484874/

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/23/2016 - 5:03pm
Replies by: JuTMSY4, Anonymous, Bubbles

Bin

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CCJ's picture
Replies 4
Last reply 3/23/2016 - 7:41pm
Replies by: CCJ, Janner

Hi..,would someone mind explaining to me what exactly 'ulceration' is which you hear of often and is in the pathology reports. 

Does it mean crusting on the surface of the mole? Or is it the skin has erupted on top of the mole?

Thanks in advance 

Carolyn 

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way's picture
Replies 2
Last reply 3/24/2016 - 12:25am
Replies by: way, Janner

Dear Community, 

I received today the following biopsy report from a mole that I just had removed. I will see the doctor in a few weeks:

"The epidermis shows elongation of rete ridges. Large, irregularly-shaped nests of melanocytes are seen along the basal layer. The cells show mild nuclear atypia and contain fine melanin granules. A rare abnormal mitotic figure is noted. Intraepidermal spread of single melanocytes is also noted on melan-A strain. ki-67 demostrate a low proliferation index. There is papillary dermal fibrosis and a superficial perivascular lymphocytic infiltrate present, along with melanophages."

How does it looks?

Thanks!

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jodaro's picture
Replies 2
Last reply 3/22/2016 - 5:42pm
Replies by: Janner, jodaro

Hi All,

Quick backstory: first time at the dermo late last year for a mole that my family thought looked weird. Doctor decided to shave biopsy that one and another one. The first one was normal, but the other one ended up being stage 1b, .75mm melanoma. Follow up WLE got clear margins. Went back in a few weeks later for the full scan, was told "you have a lot of strange moles." Identified a handful to watch, 3 of which got shave biopsied soon after, and all three came back normal.

I had my 3 month check today. After a full scan the doctor identified three more that she thought were worth getting biopsied. Two on my right leg (outside of knee and uppper thigh) and yet another one on my back (that will be 5 total on my back, its probably 7 inches from the original melanoma).

As it stands the plan is to shave biopsy the three. It sounded like the doctor wasn't totally ruling out, however, going straight to a full local excision of one or more. I guess the third option is to wait another three months. The one on my knee maybe might have changed/grown a little from last time, but it could also just be a measurement margin of error.

So, in your experience and opinions, what would you do next? Anyone been in a similar situation? I'm not averse to any of the procedures or scars, those are preferable to the potential alternatives. I'm leaning toward the shave biopsy as it's somewhere in between the other two extremes, and my doctor seems to think that's a good plan. If they are all clear, great, done for now, I've got some new tiny scars that I'll forget about. If not, then we go from there. However, are there benefits to getting them fully excised right away, aside from the potential of having to go back and do that anyway?

Thanks!

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Sce1's picture
Replies 2
Last reply 3/22/2016 - 4:12pm
Replies by: Sce1, keepthefaith11

Before Christmas I posted here about my 6 year old with a mole that was changing quite a lot. We saw the dermatologist and as the system here in th UK is that when you see your gp (everyday doctor) with a suspicious mole you have to see a specialist dermatologist within two weeks. WWe saw the dermatologist and she started the conversation with a quick look saying it was fine, come back in 12 months. After about 5 minutes she them said no maybe 6 months, no 3 months and see the paed specialist dermatologist. She was obviously someone who needed to verbally process stuff but it scared the life out of me. I felt like she didn't know what she was doing. However,  my husband ... ever the optimist said all would be fine.  With husband away on military deployment I took our son to the second appointment on my own,  expecting to be told I was an over anxious mother. Not at all. The paed dermatologist took one look at it and said 'right that'll need to come off' she said they could do it there and then. She was 50/50 about it being a benign spitz nevus or a melanoma. She said that as melanoma is so rare in children this was on out side. I couldn't have it removed there and then. I knew I'd need to prep him and she was happy to wait a couple of weeks for me to prep him and to be honest myself.

Today he had the removal. I made a little cartoon (not that I'm great at drawing)about what would happen and this really helped him to stay calm. He had gel to numb it a little and then the needle for the local anaesthetic which was horrendous in that my usually 'nothing bothers me' 6 year old was screaming in pain. Obviously this only lasted about 5 ,in items but it was very upsetting. Next the dermatologist then cut the mole out, it was about 12 mm diameter and at present she only for about another 2 mm outside that as she thinks it is benign at present. It will now go to the lab and we will find out later this week about what exactly it is.

I guess I'm posting in one way to share this with people who will understand the sheer fear of what it could be and possibly in case there are other parents who may gp through similar. Also though because during the weeks of not knowing I have found comfort in reading people's experiences on this group. Some stories are of terrible sadness,  some of great hope ... even though, God willing,  my son may not end up having melanoma I have found reassurance here that you should always be vigilant and not feel guilty for being posssibly over cautious.

Whatever the outcome this week I would like to stay on this group and wish everyone well. 

Beat wishes 

Shamaine xxx 

Sce

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Anonymous's picture
Anonymous
Replies 0

Had an complete excision for a compound nevus moderate atypica because the shave biopsy did not get clear margins.  Pathology diagnosis from the excision states: compound nevus moderate atypica, scar tissue from shave biopsy, clear margins.  Also noted twice in the diagnosis is recurrent nevus phenomenon.

Is recurrent nevus phenomenon due to the scar tissue from the prior shave biopsy or because there was margins involved the mole came back to the surface from the time the shave biopsy was done to the two months waiting for the complete excision?  

Was reading about recurrent nevus phenomenon and some articles mentioned it can be difficult for pathology to decipher the characteristics of a biopsy scar to melanoma, especially without the original shave biopsy slides to compare with the excision slides.  Both pathology was done at the same lab so I am assuming both slides were used to compare.  

Just want to gain all the knowledge I can to be my own best advocate...Thanks for the help! Kate

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