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 8/23/2016 - 9:46pm
Replies by: sister of patient

I noticed a dark brown almost black spot on the sole of my foot. I mentioned it to my pediatrist (who i was seeing for plantar fasciatis) and he told me not to worry about it...that it was just dried up blood. Well, last week the plantar fasciatis was becoming unbearable so I made and appt. so see a new podiatrist as the old one has since retired and the first question that he asked me upon examining my feet was was i aware of the spot on my foot? I told him what the my old podiatrist had said and he looked at me and said that it was not dried up blood. He then asked when was my last physical and he told me to make an appt with my primary care physician as his opinion was that i needed to have a biopsy to make sure it wasn't skin cancer. I immediately made an appt with my primary care doctor who agreed with the podiatrist. She had her office schedule an appt with a dermatologist/Mohs surgeon. My appt is this Friday. My doctor said that they are going to access the affected area and then perform a biopsy at this visit. I'm so scared. I have no idea what to think. I honestly don't think that I've had enough time digest what is going on. I haven't told friends or family....just my spouse because i don't want to make something out of nothing but I don't know what to think.

 

 

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/23/2016 - 9:24pm
Replies by: Casitas1, VeraB

Hello all, 
Looking for some advice and support here. I have been undergoing immunotherapy treatment which has been decreased from a two drug therapy to a single drug therapy (Keytruda) but the side effects have been unbearable lately. I have been hospitalized with colitis about 2 months ago and then again with pancreatitis a few weeks ago. I am now home but check ups with the oncologist show a lipase level that is not decreasing. I have been taking corticosteroids at home as well as had an IV infusion today. In addition to my recent weight loss of 15 pounds, I have been extremely fatigued and find it difficult getting out of bed every morning. However, latest CT scans do show progress and benefits of the therapy. 
I am on a bland diet for the pancreatitis although I have had no appetite anyways.

Anybody else struggling with the adverse effects? Its becoming increasingly difficult fighting this battle and I'm looking for any advice or support I can get. 

Thank you! 
 

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PFritz's picture
Replies 5
Last reply 8/23/2016 - 5:57pm
Replies by: anp21, debwray, btcedarr, PFritz

I am a 35 year old mother of two boys and this year my world was rocked my on Spring Break when I received the news that I had Melanoma. It has been a whirlwind since April. I had a T1b due to thickness of .55, Clark III, no ulceration, and mitotic 2 on my left shoulder. I had a melanoma in situ on my left ear. I had two wide excisions and now confused on next steps. Also I am a type 1 diabetic on an insulin pump and a huge family history of cancer (brother passed away from lymphoma and my dad had an ocular melanoma).

After my two wide excisions in May (and multiple other moles removed while under that weren't melanoma just suspicious that dr wanted removed) I've had a few other dermatology follow ups which was just the watch and wait attitude. I'm not that kind of person given history so we are down at MD Anderson right now. Pathology here was completed and they changed me from a mitotic rate of 2 to 3, is this concerning because it freaked me out?! The dr had said it could be because each pathology looks at different slices and also because their pathology is so good at finding outliers.  In my original treatment the dr said no to a Sentinel Node Biopsy due to risk of surgery (was already going to be a 3 hour surgery and being a diabetic for healing) and he didn't see the benefit of it. At MD Anderson the dr said basically he can't do anything for me unless I have the Sentinel Node Biopsy so what are the thoughts on doing this well after the wide excision, with being 1b? Are there pros, cons, thoughts? We are just very confused with some may differing views on treatment and whether this mole or that mole should go in a jar.

Thanks!

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BrianP's picture
Replies 12
Last reply 8/23/2016 - 2:41pm

Can anyone recommend a melanoma specialist at MDA.  Dr. Davies was recommended but can't get in to see him until Sept 2.  I can probably get in with someone else next week.  Is there someone else just as good or wait one more week for Dr. Davies?  Thanks for any recs.

Brian

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Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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Christine.P's picture
Replies 14
Last reply 8/23/2016 - 12:10pm

I finished my 3rd dose of the ipi/nivo combo 2-1/2 weeks ago and for the first week there was no change in my side effects. Then, a week in, I was clobbered - really severe nausea, loss of apetite to the point I can barely eat (I've lost 6 pounds in the last 2 weeks without trying), nearly continual stomach cramps in the diaphragm area, increased fatigue, and increased heartburn. The past couple of days I have noticed that I have been sneezing a lot and have a lot of mucus in my throat (a cold, perhaps?). 

I know that I need to eat and I sometimes feel hungry - until I acutally try to put food in my mouth. Most times I have to choke food down and can only manage about 5-6 bites at a time. I try to stay hydrated, but all beverages (water, juice, vitamin water, ginger ale, etc.) also make me feel like gagging. 

I emailed my doctor the full description so I wouldn't forget anyting or get distracted by quesitons or comments and they called and told me to come in that day (last Monday). So I did. I met with my nurse pracitioner who did not listen to anything I said and offered platitudes like, "Yep. This is what it's like!" and "These don't mean your cancer has spread." Um. Yes, I know that. I am not an idiot. When I told her that I had to choke food down, she told me what to do if I start choking! 

Needless to say, the whole visit was not just a waste of my time and completely disheartening, but I got no help. My 4th dose of the combo is this coming Wednesday and I am terriified of what might happen next. I know lots of other people have way worse sitiuations than I do, but I am mainly fighting this alone. I live in Rhode Island and my family is in Iowa. I have a couple of friends who help when I need them, but for the most part, I am alone. And this is just a lot to deal with alone. 

I guess I don't even now why I posted this. I just didn't want to feel alone, I guess. I know all the advice - chin up! keep fighting! etc., but sometimes an understanding ear is all I really need. So, thanks for listening. And if anyone has any advice for any of these symptoms, I would welcome any and all ideas. I just can't imagine feeling this crappy for multiple months without some kind of help. 

Christine P. 

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Capt jack's picture
Replies 5
Last reply 8/23/2016 - 10:02am

Hi everyone, New to site.  Looking for others on keytruda who are NED and made a decision to stop treatments and go with scans every three months.  My main side effect was extreme fatigue and vitilgo. Oncologist wants me to continue treatments into progression, but the fatigue renders me close to useless. There isn't much in the way of patients experiences to help with the decision.

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Alestrada88's picture
Replies 11
Last reply 8/23/2016 - 6:56am

Hey everyone, please bare with me here as I'm new to this site and in desperate need for advice! I'm 26 years old and a new mommy and newly diagnosed.

On August 1st, 2016, I was diagnosed with melanoma on my abdomen. My dermatologist told me over the phone and said the surgeon would be seeing me in 2-3 days. Surgeon sees me and said I was a stage 2 melanoma. Then fast forward a week I had a wide local excision of my abdomen and a sentinel node biopsy. In the node biopsy he removed 3 lymph nodes. Yesterday I found out 2 of the lymph nodes were completely negative and one lymph node had EIGHT melanocytes that the pathologist believes to be benign. Now after this information my oncologist stated I was a stage 1b.

howver, he is recommending a right lymph node dissection. Everything that I read said that it is an extensive surgery with a lot of recovery time and potential for lymphedema. My dr said he is 99% sure I do not need the dissection but "doesn't know what else to do". 

Also, he recommends no more kids but to wait at least 3 years if we are going to have anymore children. We wanted 4 babies and this news is hitting myself and my husband very hard.

 

Can an anyone offer any advice, words of encouragement, education, anything?!?!

Please!!

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Anonymous's picture
Replies 1
Last reply 8/23/2016 - 6:52am
Replies by: debwray

Interesting final paragraph that could change how remote Dr visits work ... would you like a 2nd opinion from an electronic "trusted advisor" aka Watson? yes, that Watson the compouter that played Jeopardy...

https://www.statnews.com/2016/08/19/ibm-watson-cancer-asia/

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Maureenk1's picture
Replies 3
Last reply 8/23/2016 - 6:29am
Replies by: debwray, Maureenk1

Hi!  I recently had surgery to remove a mole which was stage 2 ulcerated and 4.2mm thick behind my right knee.  I was referred to an oncologist who advised either Pegylated Interferon a-2b for 8 weeks or Interferon a-2b for 4 weeks.

So far I am not seeing the worth of either therapy based on a stage 2 diagnosis and the effects one can incurr.  Has anyone had these therapies for stage 2 melanoma?

If so how has the protacol impacted your daily life?

Thanks,

Maureen

 

 

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ecc26's picture
Replies 18
Last reply 8/23/2016 - 1:11am

got back from the oncologist this morning and he confirmed my suspicions that the Ipi/pd-1 combo is not working. now what? there was talk about chemo and hospice and we set another apt for Wed so I could have time to make a decision. I've just finished looking the cliicaltrials.gov listiing and don't see anything for me.

I need help and any suggestions are welcome

-Eva

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JohnA's picture
Replies 9
Last reply 8/22/2016 - 11:31pm

Hey folks-

My wife has had a partial response to iPi-nivo combo - all previous tumors in liver, bone, lungs and brain disappeared after 3 rounds, but 3 new brain mets appeared and have grown in the past 3 weeks. 

so, our onc at a major medical school hospital is recommending we meet with a radiation oncologist to discuss srs for the remaining 3 spots.

not knowing much about this srs field, is there variation in quality from place to place that we should consider? Is there a place or two considered to be outstanding at it?

we love our oncologist and picked him in part bc of his considerable experience and clinical judgement in treating met melanoma with iPi+nivo.  but need some advice about srs.

were also seeking second opinions from Sloan Kettering, Dana farber, and Johns Hopkins.

thanks!

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Jon M's picture
Replies 13
Last reply 8/22/2016 - 6:30pm

Hi my name Jon i was diagnosed on June 24 with stage IIb melanoma on my right leg. I had my wide excesion and a split thickness skin graft along with a SLNB done on August 4. I just recevied my pathology report yesterday and my margins are clear in my leg but the SLNB came back with cancer in it. So now i think this makes me stage III. I go back to the surgeon on Monday to talk about my options. From what i have read i dont know if i want to go through with a CLND. Some studies now say that it doesn't improve overal survival rate so my thoughts are why put myself through it. I am going to discuss treatment options with my surgeon and i have an appointment with an oncologist. I would like to know who has not done a CLND and what treatment they went with?

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Julie in SoCal's picture
Replies 7
Last reply 8/22/2016 - 6:25pm

Greetings friends!!

It's been awhile since I've posted anything - mostly because nothing had changed.  I was doing Pembro, (I've done 21 bags) and it was working! Up until now, it has taken care of all of the peskey little in-transit buggers.  It was so cool to watch / feel the little suckers melt and go away.  I figured Pembro was winning the mel battle.  But in this past month I've had another in-transit pop up.  So I don't know what to think. Dang Mel! 

I have scans again on Monday.  It's been 6 months since my last scan, so there' s a possibility of change (also a possibility that there's no change- but somehow that's not in the forefront of my mind). I'll talk with my Rock Star Doc and see what he has to say, but waiting and watching and wondering if I've failed another treatment take some active doing.  

So anyway, this is how it is. I appreciate the comfort and wisdom of the community here.  There's nothing like it.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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julia80211's picture
Replies 3
Last reply 8/22/2016 - 5:23pm
Replies by: debwray, julia80211

Hello-

I've seen some others post their biospy results so I'm hoping that someone can take a look at mine too.  

 

A little background: A friend of mine passed away from Melanoma last fall.  She asked all her friends to get skin checks, so I did.  I had one mole that had changed but nothing that seemed concerning as it had always been skin color.  Then part of it develped pigment.  Then the pigment formed a dark line in the mole, so I made an appointment.  She drilled how important the "E" is when looking at your moles.  The PCP said "It's probably nothing" but referred me.  The derm thought it was nothing but took the biopsy to put my mind at ease.  Everything came back fine in March.  

Once the biopsy area healed a tiny dark spot showed up and grew rather quickly from a tiny dot to a 3mm spot in the matter of a few weeks.  I was in for something else and the derm saw it and asked so I recounted what happened.  At that point they decided to take a punch biopsy.  

I got a call last Monday.  The derm said that the biospy came back with "severe atypia" and she said the pathologists couldn't decide if it was atypical or melanoma.  So I have a excision scheduled for Sept. 2nd.  From reading other path reports on here, I don't seem to have some of the key measurements though. :( 

I just picked up a copy of the report today to try to put my mind at ease.  The whole "maybe it is, maybe it isn't" made me nervous.  

On the tissue exam part it reads "erthematous papule x 6 hours, reactive erthema vs erthema multiforme vs bullous arthropodB- hyperpigmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

It was reviewed by 2 pathologists.  The first one said "recurrent junctional nevus with architectural disorder and severe cytologic atypica, surgical margin free of involvement."  Sounds good, I think?   The report says thsi person is a pathologist but doesn't specify dermapathologist. Second pathologist (who is specified as a dermapathologist) says: "hyperpitmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

Normally, I wouldn't worry but given how quickly the spot grew at the point of the shave biopsy is making me a little nervous.  Any thoughts? 

 

Thank you!

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