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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273c's picture
Replies 3
Last reply 6/7/2015 - 9:12am
Replies by: Bubbles, 273c, mrsaxde

My husband had surgery (lymph node tumor and one between liver and kidney) last week so at the moment he is NED.  We are waiting on pathology and some recovery from the surgery before we head down the path of IPI, ipi/Nivo or maybe just Nivo.   

 

So here is the wildcard, my husband has been itching for months.  He also has several patches of vitiligo.  Itching to the point of a precription antihistamine.  The day after his tumors were removed the itching stopped but by day four after surgery it has started up again although not nearly as bad. 

 

Anyone have itching caused by the melanoma?  Anyone else with pre-immunotherapy itching? What happens when you add in an immunotherapy that then causes itching?  How do you tell if the immunotherapy is working if there are no tumors and you are already have itching/vitiligo? 

 

Thanks,

Kathy

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Anonymous's picture
Anonymous
Replies 0

I have not heard from Robbier for a long time. I would like to know how she is doing.

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Just saw this: http://www.bidnessetc.com/41406-amgen-inc-amgn-tvec-gets-green-signal-fr.... Sounds like another step towards virus therapy.

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Ava Jean's picture
Replies 3
Last reply 6/5/2015 - 5:35pm
Replies by: ldub, Janner, Anonymous

Hello all, 

I'm 34 and was a diagnosed with melanoma in situ just a couple of days ago. The dermatologist told me that it has been completely removed but scheduled me in for a WLE in four weeks' time to be doubly safe. I consider myself very fortunate to have discovered it at such an early stage but am nevertheless shocked - and very frightened - by the diagnosis. I am very anxious by nature and have an 8 month old baby who I am currently looking after while on maternity leave. This unfortunately leaves me a little bit too much time to think and dwell, which has taken me to some very dark places. 

I was hoping someone could offer some words of wisdom/comfort that would hopefully help me put a little perspective on situation and cope a little better on a day-to-day basis.  

 

Thank you, 

Lisa

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G-Samsa's picture
Replies 11
Last reply 6/5/2015 - 1:04pm

I thought this might be interesting for others on this path.  I am nearing the final scheduled trial treatments and have had little difficulty tolerating them.  My most recent scan showed, amid all other stable or reduced tumors, two new less defined spots in my lungs.  The Drs. felt that while new melanoma could not be ruled out, it was more likely a reaction to the drugs.  You may have seen that there was an important paper presented at ASCO on the serious side effects to the lungs from the combo (translates to high mortality)  The course of action was to skip treatment and schedule an interim scan (4weeks). It's hard to for me to skip a treatment since I believe  this has been a life raft---you forget how powerful the drugs are and that the things they set in motion can build, and that you sometimes have to let go and hope you can swim.  Don't know whether anyone else has had this experience, so I thought I'd put it out there to stimulate awareness.

 

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Happyjim's picture
Replies 2
Last reply 6/5/2015 - 12:16pm
Replies by: Happyjim, Janner

So I had a blood blister like lesion on my left buttock (never seen the sun obviously) that came from the site of a rather innocent looking small mole. The lesion got to 4.5mm at its widest, 3mm at the narrowest. To be honest I have no idea how long it was there as it was slightly off the side of my butt. It could have been months but more likely weeks.

Yesterday I had it removed, he excised around it roughly a centimeter and to a depth of a couple of millimeters. He is not even positive it is melanoma but he said a flat out no when I asked him it was nodular, can i trust his confidence without pathology? Would nodular be obvious enough?

thanks for letting me vent. So anxious I can barely function.

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las630's picture
Replies 8
Last reply 6/5/2015 - 10:36am
Replies by: las630, Patina, KMick, Anonymous, _Paul_

Good evening,

I am newly diagnosed with Malignant Melanoma.  I had a mole removed last month and it came back Malignant Melanoma (Breslow 1.2 with ulceration and 2-3 mitoses per mm2).  I met with a surgical oncologist 2 weeks ago, and I am scheduled for a WLE with SLN biopsy on June 19th.

I live in Fallbrook, CA and my dermatologist suggested I see the surgical oncologist at Loma Linda Medical Center in Loma Linda, CA (1 1/2 hours away).  I am willing to drive any distance to get the best treatment. 

Does anyone have any suggestions of great melanoma specialists in the southern California area or do you know if Loma Linda is highly recommended?  Temecula/Fallbrook/Murrieta/Vista/Escondido/Oceanside/Poway/San Diego??

I am insanely nervous, and the more I research, the more nervous I become.  I am a very upbeat and positive person and I am always super strong for other people, but deep down I am crazy worried and upset.  I always feel like laughter is the best medicine, and I always joke about everything, but internally I am really scared and I find myself crying when I am by myself and not keeping busy.  Does anyone else have the same feelings?  How have you been able to talk about your feelings??

I don't know, I guess I'm just rambling.  :)

thank you,
Lisa

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Anonymous's picture
Replies 5
Last reply 6/5/2015 - 8:33am
Replies by: _Paul_, jessnflip, dentholla, Anonymous, BrianP

My husband,father of 5 young boys, had a few "annoying" moles removed about 2 weeks ago.
The Dr. Sent the moles to Mayo clinic and today called us into the office to hear the results.
Mayo did a FISH test and im not fully understanding these terms.
Obviously, my heart and head are in a whirlwind and ive been trying to gather as much info as possible.
All moles came back normal except for one on his lower back. It came back positive for malignant melanoma.
Here is what mayo sent back
Malignant Melanoma,type unclassified,is identified forming a polypoid mass in the dermis without definitive emanation from the overlying epidermis.
The tumor is invasive to clark level IV, Breslow depth 3.1mm, nonulcerated.
Radial growth phase is absent. Vertical growth phase is present (epithelioid cell type). Focal vascular invasion is identified.
Mitotic rate is 1/mm2. Tumor infiltrating lymphocytes are absent.
No regression or microscopic satellites are identified.
The tumor extends to 1.5mm of the peripheral margin.
HMB45 is positive in the lesion cells. Ki67 shows foci of increased proliferative activity.

Interpretation:
The results are abnormal. Increased copies of RREB1(80%), decreased MYB:CEN6 ratio (74%), increased copies of CCND1(72%), increased copies of MYC(40%), increased MYC:CEN8 ratio(14%) and loss of both copies of CDKN2A(50%) were identified.

My husband is 41 yrs old, father of 5 boys (ages 7-16!). Very active. Never had any signs of being sick or something being wrong....
Im in a panic.....im scared for him.
Our normal family dr. Doesnt have experience in this department so he wasny of much help in explaining. He did set us up for a full body ct scan for this friday and a surgeon appointment for tues.
Can anyone help me process these numbers and what it all means....thank you :(

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jualonso's picture
Replies 2
Last reply 6/5/2015 - 8:05am
Replies by: jpg, Janner

Hi friends, after a rough time i would like ask for and advice. After 2 doses of keytruda brain metastasis was discovered. WBR was applied, i felt like crap. Now they offer to me fotomustina, i think quemo. Any experience with this.?????????

 

 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/4/2015 - 11:57pm
Replies by: Janner, Toby0987

Stage 3b amelanotic , mitosis 18. 2 yrs NED. Just got call from original derm that I hadn't been coming in for skin checks?! Really two years it took them to realize this but that isn't my question. I had growth on chest that was cracking open and bleeding, derm said it was just a nuisance spot and froze it. This is the same derm that said my melanoma was basal cell. Should I have let her freeze it or did I just make a big mistake

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I've been deep in the process of getting into a couple potentially good trials. So far that's still going on.

But got a mri of my spine. Two places have soft tissue masses in the spinal canal. One says only minor encroachment. Fortunately we have caught them earlier this time unlike last year when I was almost paralyzed. So although they have narrowed the canal some im not in immediate danger of being paralyzed this time. I can actually walk and feel fairly ok. Granted reading the report where it says every bone in my spine has something wrong is a bit unsettling.

I know if I don't get this taken care of now I'll probably be in the good part of a trial and this comes to haunt me. So I have to get this done before I start a trial.

His nurse says it is up in the air but he is thinking about burning it. I guess that would be radio frequency ablation. I was wondering if it works can this procedure be done again if in say x months I need it again? Unlike radiation which I was told last time can only be done twice in the same spot. He also does the cryo, lasers and everything else is at his disposal.

My non local doc at mayo was thinking cryo and there is a doc there that all he does is cryo on the spine. But I'm thinking of canceling that if I like what this local doc has to say Monday. I must admit the local doc did a lot of detail with the mri report and comparing with several other older reports so I'm getting more comfortable with this local doc.

Is there anything else I should know about this? Or questions I should be asking?

Sorry to be posting this at a time when others are going through so much but I really need some thoughts on this. Maybe I'm even crazy for wanting to do this treatment. My onc first was saying lets just wait and see if it gets bad enough and if so we'll try surgery again. I bugged him enough so he refered me to this interventional radiologist who looks like he has a really good resume on the web. It's dr jennings at Siteman, wash u, barnes in saint Louis.

Thanks.

Artie

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Replies by: kathycmc, Janner

I am undergoing a biopsy tomorrow, and the strong suspicion is nodular melanoma. It is a 4-4.5mm blood blister like lesion on my left buttock, and by the look of it there are few other things it could be (that being said, I pray for unlikely good news, but do not expect it). The doctor is doing an excision biopsy and that lead to some questions to my mind, as I reel with the potential news, and he seemed a little reluctant to answer many until the biopsy came in. He is also my GP, not a derm etc.

Is this disease *always* progressive? I mean, if someone was Stage IA or IIA, for instance, will they always progress to a different stage? It seems like from reading, so many start at Stage I or II and still end up Stage IV eventually. Are there people who have beaten NM on a permanent basis, or does it always come back? Is remained NED an unrealistic expectation even in a good prognosis?

I know more than a few people who have battled melanoma, but not nodular. They are all fine, at some level and have made some recovery. I have never met anyone with nodular, so I have no experience.

Finally, a question about luck. Does anyone ever come out of this clean? They biopsy it, they cut it out, and they get it all, no more issues? Or is the nature of nodular such that even at 1A you are going to battle it for the rest of your life?

Please forgive any resounding igronance or accidental insensitivity of these questions from a guy just trying to wade into a pool I think I will be thrown in in a few days. It is terrifying and numbing, and a world no one thinks they are going to be a part of until they are. Now I just want hope and the strength to do battle with this thing, and that begins, well, at the beginning.

Thanks for your patience.

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Hi there,

I know this has been mentioned before but it seems most of the threads end up with different conclusions depending on who is responding so I thought I would ask again.  There seems to be a huge gap between different doctors recommendations which is very scary when facing a disease like melanoma.  I would really appreciate it if you might comment on advice you have been given and what stage you were/age at the time.  Also if you did fall pregnant what the outcome was (although I know that is just anecdotal evidence at the end of the day it is encouraging to hear).

It feels selfish to write about this here when so many people are struggling so much with this disease, but the prospect of worsening your prognosis with pregnancy is frightening.  Made more so by the disparity in opinions within the medical fraternity.  I'm not sure if this is clinical bias, or perhaps lack of up to date knowledge that drives this.  From my reading, Marcia Driscoll's most recent 2010 review of the data suggests no correlation between pregnancy and melanoma/hormone use such as oral contraceptives/HRT and melanoma etc.  I am reassured when I read the article but I know some researchers get a bee in their bonnet about things and perhaps she is in the group favouring pregnancy. I recall lots of comments on this website, some women who have died following pregnancy with young children left behind.  I'm not sure of their stage when they fell pregnant but I know some have been convinced progression of their disease was related to pregnancy/IVF.

My situation is that I am 37 and have two beautiful children.  I do not want to leave them without a mother and would not want to take a risk with that.  Similarly I do not want to not get pregnant if there is no real increased risk of recurrence as per this article and some advice I have received.  We have wanted a large family of 4 children and time is running out for that dream so it is decision time.  2 years ago I had a Stage 1 melanoma removed which grew during pregnancy.  It was Stage 1, no ulc, <1 mitosis, 0.83mm, Clarkes IV, neg SLNB.  I saw three doctors before it was removed and only then because it was "bothering me", it was itchy. 

I have consulted various people - two dermatologists told me with the latest literature "no worries", dont "not get pregnant" because of the melanoma.  A surgeon (melanoma specialist) vaguely said, well if you wait 2 years you should be right.  More recently a Prof of Surg (melanoma specialist) has  said that if I fell pregnant, and if I were to recur, pregnancy would bring this forward.  (this was not borne out by my reading of Marcia Driscoll's review). 

This is very rambly and if you have managed to get this far you must be interested in pregnancy and melanoma.  I would really appreciate it if you would share the advice you have been given along with your age and stage of disease to see if there is any real consensus.  I am not sure if this truly does remain controversial or if it truly is reasonable just to go ahead with no real increase in risk (as per my reading of Marcia Driscolls review).

 

Melanoma tends to bring out the anxiety in me and I feel flustered just writing this and trying to get my thoughts together on the topic.  Hope this makes sense to you and thank you for reading.

 

 

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AnnaBanana30's picture
Replies 10
Last reply 6/4/2015 - 1:57pm
Replies by: CWeclaw, Anonymous, AllyNTAus, AngelaM, teri0915, natasha, bdhf

Has anyone developed melanoma while pregnant or shortly after?

I just think it's intresting that two moles on my body changed while I was pregnant with my son and turns out they were both melanoma in situ. I just wonder if there's a link since your body chemistry changes so much while your pregnant.

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/4/2015 - 10:34am
Replies by: jessnflip, Anonymous, Andrew1725

I was recently diagnosed with melanoma.  They did a 1cm and think I am going to be fine.  It was found during my routine check.  After something like that you start to pay attention to everything.  I have a small mole like mark (slightly raised) that has been there for a few years.  Hasn't changed in color or shape or size (purplish). The dermatologist has seen it several times and told me I could keep it.  Don't want to be paranoid...want to take his advice.  Have to assume he knows what he is looking at.  Plus all that I read...you are looking for change.  True?

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