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 9
Last reply 3/7/2016 - 8:09pm
Replies by: Anonymous, Maria C, BrianP, MoiraM, Issy

Did my first ipi/nivo  infusion on Friday and I woke up today feeling terrible.

A bit of loose bowel movement and I feel like i got a brick in my stomach and pretty tender around the liver wher i do have quite a few mets.

On top of that I have extreme fatigue.

I have been lying around for hours drifting off into space.

The question i have i guess is should i do anything ?

It seems like these are quite common side effects

I am on 4mg of steroids daily as it is but still i am like a space cadet today.

Any tips or things i should do?

 

 

 

 

 

 

 

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Elandmlmom's picture
Replies 4
Last reply 3/8/2016 - 11:26pm
Replies by: newmanmark, Anonymous, AllysonRuth

I was wondering who out there is dealing with mets to pancreas. I'm awaiting an appointment to see what can be done about mine. 

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ashley_k's picture
Replies 6
Last reply 3/7/2016 - 8:22pm

Hi everyone,

So, last week I noticed some pain (no lumps) in my left armpit.  My thin, stage 1A melanoma was removed 7.5 months ago about 2 weeks before I delivery a baby girl.  The melanoma was on the left slide of my torso below by left breast.  This past month I have had strep which I got from my two school age kids (and treated with a shot of penicillin and oral steroids in an ER) along with contracting some kind of short lived stomach bug which felt like flu about 2 weeks ago which everyone in the house got (I think it was Norovirus).

Anyway, this pain in my armpit has been there about a week.  In one sense I am trying to suppress the worry because I am feeling like I am a hypochondriac where the 'what if's" are creeping into my subconcious .  I did read a side affect of penicillin can be inflammation of lympth nodes and I know only a doctor can confirm.  I am also exclusively breastfeeding the baby which I have been told is safe (but then again the jury is out on that too but the baby refuses the bottle so it has me between a rock and a hard place).

Next month I already have an appointment made to speak with a genetic counselor at an oncology clinic locally.  We live in Hampton Roads which does not appear to have any melanoma speciality clinics nearby - and I have family in Maryland.  A friend has strongly recommended I go to a specialist in melanoma such as Johns Hopkins to get evaluated.  

So for those expereinced, might you be able to provide some suggestions?  I'm a bit concerned due to the recent article published about how melanoma diagnosed in pregnancy or within a  year of it has been found to be more aggressive then those found outside of pregnancy or a year of.

Long term - without the armpit pain being a factor, would it be too much of a stretch to go to Johns Hopkins to get a second opinion at this stage or should I wait?  

I asked my dermatologist this question and she suggested I wait to find out if it metatisizes before I pick a speciality clinic since many clinics specialize in one specific kind of melanoma / clinical trials.  I do not know if this is true.

Might anyone be able to recommend my next course of action concerning the armpit? (call the PCP or dermotologist or just wait and see)?  

Thanks,

Ashley

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Jubes's picture
Replies 2
Last reply 3/7/2016 - 10:25am

http://scienceblog.cancerresearchuk.org/2016/03/03/new-immunotherapy-dis...

watch the little you tube video  very exciting!

anne-Louise 

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/6/2016 - 3:43pm
Replies by: Jubes

I saw something on the news yesterday about new cancer immunotherapy research but didn't quite catch it. Has anyone heard of new research where they remove cancer cells treat it with your own immune system and then put it back? I guess that would reduce the side effects of over active immune system. But I just saw the tail end. Could have got it completely wrong...

anne-Louise 

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Dalym44's picture
Replies 4
Last reply 3/6/2016 - 5:11pm
Replies by: MoiraM, jennunicorn, Dalym44

Hello, I was diagnosed in December of 2015 at the age of 27, with melanoma on my wrist. In January I needed to have a complete lymph node dissection. Currently I am stage IIIA. I have been recommended to start interferon or Yervoy to reduce the risk of reccurence. I would like to get an opinion from anyone on their experiences of using yervoy at stage 3. Also my PET scan came back negative and my chest x rays are clear. 

One other question I have remained out of work due to my surgical drains. I was curious whether I should request some additional time to adjust to which ever treatments I choose, or whether the side effects may not begin for a while??

 

thank you 

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keepthefaith11's picture
Replies 5
Last reply 3/6/2016 - 5:33pm

My dad had his second infusion on Wednesday. No issues at all after the first one.

Yesterday morning he woke with a fever of 101.6. No other symptoms at all. It then went up to 103 in the afternoon but was brought down to 100 with Tylenol.

Talked to the doctor and she initially suggested ER to check infection, but when I told her there are no other signs she said we could hold off. She said it is a fairly common side effect of Yervoy.

At 6am it was again 102 but again went down with Tylenol. So hard to know if this is Yervoy related or not. We will go to the cancer clinic tomorrow and get bloodwork done, rather keep him out of the ER though.

Anybody experience this?

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/6/2016 - 8:54pm

This might be a silly question, but wondering for those who were diagnosed stage 3 initially and are now stage 4, how long before you ended up in stage 4? 

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Anonymous's picture
Anonymous
Replies 7
Last reply 3/6/2016 - 10:18pm
Replies by: Gwen in Maine, Anonymous, Polymath, Jubes, jenny22

Hi everyone. I just went from stage 3 to 4....found out yesterday. I have a 10 cm mass  on the head of my pancreas and another 9 cm mass lower down in my abdomen. I was wondering if others have tumors this size or larger. I am dumbfounded by the size.....

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Marie with 4 boys's picture
Replies 3
Last reply 3/6/2016 - 7:41pm

I've seen the surgeon who will do the removal/margins on my in situ, but now I'm told there are no openings for 3 weeks to have this removed, unless I want to go under general anesthesia. I just want this off me since the melanoma extends to the margins of the biopsy. Any thoughts? Is three weeks going to make much difference? I'd prefer not to be put under.

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Anonymous's picture
Replies 2
Last reply 3/5/2016 - 12:49pm
Replies by: jennunicorn

The pathology report reads, "Diagnosis: Melanoma in situ".

Comments: This melanoma in situ is rather narrow and does not involve the margins of this punch specimen. However, appropriate excision is advised.

Gross description: Received is a .6 X .7 cm tan cylindrical skin segment. TS 2 (??)

Microscopic description: This punch specimen shows a narrow but poorly circumscribed confluent proliferation of atypical junctional solitary and nested melanocytes with prominent pagetoid spread above the basal layer and focal adnexal involvement.

 

We are meeting with a local oncologist we were referred to by the diagnosising dermatologist. We also have an appt at the Moffit Cancer Center in Tampa, FL. What are some questions we should ask? What does this report say, exactly? The dermatologist didn't even give the diagnosis, it was the nurse, and she acted like this wasn't a big deal which makes me mad on his behalf because I feel like everyone is sending him the message that it's not ok to be worried or stressed. I wasn't there with him and he was a little in shock.

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SarahW's picture
Replies 2
Last reply 3/8/2016 - 12:00am
Replies by: kylez, DZnDef

I tend to go for long periods without checking in on the MPIP forum, because when my husband is between office visits( every 6 weeks) we like to act as if there is no melanoma. This week we made it through a big hurdle. On Thursday Mac had a craniotomy and removal of scar tissue and residual tumor in the parietal lobe. He underwent laser surgery on the same tumor in September. He was discharged from the hospital Friday. The team at Moffitt was fantastic as has been our experience all along. I think he is at week 93 or 94 since starting treatment for metastatic melanoma, which is amazing and wonderful.Thanks to all of you here for being a resource and support!

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MarkL87's picture
Replies 7
Last reply 3/6/2016 - 12:38pm

Hi - 

My girlfriend had a SLNB (1 node removed) 1.5 weeks ago and received the news today that it tested positive in the pathology.  The Dr was out of the office so we didn't speak to him, but have an appointment Monday morning.  We were able to receive the pathology report and I think we're going to get a second opinion from a different pathologist we trust but wanted to get the forum's thoughts on what it says.  Particuarly, from the sound of the report it seems like it was very "minor" involvement but I'm not really sure....any help would be appreciated. 

 

B. Received fresh, the specimen is labeled "left axillary lymph 
node count 15893, background 901" and consists of a 1.2 x 1.0 x 
0.4 cm pink-tan lymph node with attached fat. On section it is 
unremarkable. The specimen is submitted in its entirety. 

B. Lymph node, left axillary, excision: 
Metastatic melanoma in 1 of 1 lymph node (1/1). 
S100, HMB45 (weak and focal) and Melan A are positive. While some nests are in capsule, in one focus there is definitive nodal involvement. 

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bkm355's picture
Replies 3
Last reply 3/4/2016 - 10:13pm
Replies by: ldub, bkm355, jennunicorn

Quick history....had a primary malignant melanoma in situ, stage 0 on back Sept 2012 removed with a WLE.  I just had a mole removed from a new doctor as I moved states on my thigh.  Anyways, this is what came back from path:

PATH:

evolving melanoma in situ arising in arising with association with lentiginous compound melacyotic nevus with architectural disorder, and moedrate cytologic aytypia approximates the margin.

 

Dermatolgoist said the dermapatholigst couldnt really decide if it is a melanoma in situ or not, but seems to mimic it so they are treating it as a melanoma in situ. 

 

which I am fine with another WLE and error on side of caution given my history....just never heard of an evolving melanoma in situ before...

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Hi all I have a docs appointment on Monday to check out a 10 mm mole that's now growing it looks like nodular melanoma and I'm terrified please help x

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