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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Bradley75's picture
Replies 14
Last reply 9/5/2016 - 4:04pm

Two months ago I had my regularly scheduled PET/CT and the discovered a hot spot.  At that time it was 10mm by 5mm with SUV max of 3.2.  We opted to do nothing and re-scan in two months.  The re-scan shows the hot spot again.  This time it measures 13mm by 12mm with SUV max of 6.2.  The are calling it a nodule or lymph node in the perirenal fat inferior to the right kidney.  My onc was very concerned with this and started our discussion with the dreaded, "sorry to have to tell you this, but...."  I am curious about what people on this board think about it.  I get the feeling that it is the beast making a third appearance in my life, but I never like to believe that until it is actually proven.

 

My onc did say it is for sure time to do something about the nodule/lymph node.  She told me that I have options.  The first option is have it surgically removed.  It sounds like the removal should be a pretty simple procedure.  The other option discussed was Keytruda.  I have read tons of stories on here about the various immune therapy drugs and all the success people are having with them,  I am really excited about them and think they provide so much hope for the future.  Where I am struggling here is does Keytruda make sense when there is only one spot that can easily be surgically resected.  Anybody have an insight or experience to share that might help with my decision?

Thank you for taking the time to read this. 

Brad

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/5/2016 - 10:09am

Help please! My husband has stage IV Melanoma with slow progression since 2014. While IPI and Nivo failed, his slow growth gives us time to try new meds. About 6 weeks ago he started Taflinar and Mekinist with minimal side effects, other than worsening of his Rheumatoid Arthritis which came on with the  Nivo. However lately, last 3 weeks or so, his mood swings toward me and our daughter have worsened. He's not physical but says really hurtful things and his anger and frustration go from 0 to 60 over the smallest things. I got to listen to what a terrible wife I am for two hours since I didn't say 'the right thing' this morning over a minor issue. Our daughter is 8 and if she doesn't listen the first time he snaps at her. I know he's stressed but his tumors have all been very small and now pretty much disappeared and our doctor tells him he's at no risk. I'm just wondering if anyone else has seen this type of side effect. It's not listed in the literature but I did see an old post here from another care giver. This is new for him and I'm afraid to even bring it to his attention. I'm beginning to withdraw and that's not going to help either of us. Plus I've been dealing with my own critical illness on top of it. Thanks for listening. 

Footnote: I used to be a regular poster on here but feel it's best to be anonymous on this topic. I, too, struggled being on the site after Artie passed. 

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Aaron's picture
Replies 11
Last reply 9/5/2016 - 9:44am
Replies by: Momofjake, Aaron, BrianP, JoshF, KAF, Bubbles, Anonymous, Julie in SoCal

"Significant shrinkage" generally aren't words you like to hear but I'll take them today. Have gone through a lot: damaged pituitary gland, vitiligo, now the suspicion of pneumonia (do not believe it is melanoma) but I'm beating the cancer right now and will continue to with the help of God. The clinical trial may keep me on board for now despite my responses but it is unknown when my treatments will resume.  Now to start antibiotics 

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Momofjake's picture
Replies 10
Last reply 9/5/2016 - 9:36am

Hi to all my friends and loved ones here!

I took the break you do when you get the chance for some "normal" good times:) Its tough to start off the forum with losses. Since Artie I can barely log on. Sept 12 marks 2 years since Jakes diagnosis. He was such a kid at 17. That was that time of shock.  He is now 19 and wise beyond his years. He is in charge of his medical decisions now. It's a tough age. He has been hard on me. Only me. Still quite pleasant with others, but not being able to go do his life has been trying!

K. Jake had a very heavy tumor load and had tried keytruda after all the chemo, radiation, interleukin, interferon, surgeries, etc. Nothing worked. SO they went w the MEK/TAF combo. He spent 10 days violently ill. He stopped treatment for a few days then pushed on w just the TAF. The docs have pushed him to add MEK at a lower dose but he refuses. It's been over 3 months. His first scan showed huge improvement. He looks incredible!! He is really active. He is on this completely focused mission to be "cured". He eats crazy good, takes tons of supplements, does some holistic/unconventional stuff that I barely know. He tells me very little. He is still a kid but is of age to do this and truthfully it's his body. He is smart and he believes he will win. He just cancelled a trip to Hawaii w his dad and is ALL in until his scan 9/13. It seems much hinges on this scan. He has told me he is needing to be well or be done. I understand. He is a young, adventurous, smart kid. All his friends and siblings lives have kept moving on. He says he isn't interested in living just to stay alive--I get that. So, his days are filled w blending, napping, pills, gym, little brothers, avoiding mom, and believing. He reads tons on the placebo effect etc and is wrestling with his body, mind and faith. We spent the summer doing amazing things and traveling like crazy!! There is my novel! Sorry. Hope this is good news given we deal with so much heartache here. I know TAF is short term....but who am I to tell anyone they can't win:) Just following Jake. Trying to help him. Trying to not be sad watching him struggle. And trying not to think too much about the scans coming. I think about many of you so often. I will report on scans and keep those fighting and the families of those who have lost in my prayers. 

Kerri--momofjake

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becky15's picture
Replies 10
Last reply 9/5/2016 - 9:29am
Replies by: MoiraM, geriakt, Bubbles, Anonymous, becky15, jbronicki, Kim K, Ed Williams

Regarding recent comments on this forum, it is all very well for those with the benefit of insurance in the US to imply that an SLNB is a no brainer with thin melanomas, be your own advocate etc etc. Many readers of this forum will be from Europe where, as is mostly the case and definitely is where I am in the UK, consultants will follow nationally set guidelines. As medical treatment is free to all in most European countries, there is a limit to funding and patients cannot just demand procedures just because they might want them. The guidelines in the UK are backed on the AJCC 2010 guidelines and these di not call for an SLNB under a depth of 1mm so it would be highly unlikely that you would get one.

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keepthefaith11's picture
Replies 1
Last reply 9/4/2016 - 8:34am
Replies by: Bubbles

My dad had his brain scan on Friday. It has been a little more than a month since he finished whole brain radiation. Does anyone have any ideas of what we might see on the scan? Just really nervous and want to know what to expect. He had 13 Mets in the brain, ranging from 2 millimeters to 15 millimeters.

He is feeling great now. No issues with speech and plenty of energy. Living his life as normal. No headaches, no mood changes. I would think this is a good sign. Especially since all this started with seizures.

For those of you who have had brain radiation, did it work?

The doctors are saying that depending on how the scan looks they will determine treatment based on that. If it looks like there is activity even after radiation, they will start him on the Inhibitors. Otherwise they feel comfortable getting him on Opdivo.

I know radiation is just a temporary fix. How long did it take before your tumors started growing again.

Please share your experiences. Thank you!

Annie

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landlover's picture
Replies 10
Last reply 9/3/2016 - 9:40pm

I just wanted to post a little update on my situation.  Brief background is I am stage 3c (diagnosed stage 1 in Nov. 2015) status post left neck dissection in May, now with new and growing lung nodules making me ineligible for the clinical trial I was hoping to enroll in.  The lung nodules are small (3mm, 4mm and 8mm) and inaccesible for needle biopsy at this time, and did not "light up" on PET.

I wanted a VATS to remove one for diagnostic purposes so that I could get treatment if it is mel.  I was really distraught when my doctor. said "no".  However, after a 45 minute appointment with him this tuesday during which he went over everything very thoroughly with me, I am at peace with his recommendation to wait and re-scan in 2 months time.

I am looking forward to a beautiful Michigan fall and for the first time since my surgery I feel a little free from stress and worry.  I understand that I am most likely going to be dealing with mel again, but for now I am putting it on the back burner and enjoying this beautiful life.  It isn't often that we who have melanoma get to relax but I now look at this as a gift.

Thanks everyone and I am here with you in your journeys  as well

Best,  Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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sscottmusic's picture
Replies 7
Last reply 9/3/2016 - 2:21pm
Replies by: jennunicorn, Anonymous, Kim K, landlover, debwray, Rick from NC

This is Stan Scott from King nc. In July they found my 3rd mm after surgery the site got mrasa. Now this week they found my 8th basil cell on my nose. The first cancer on my face now I'm afraid I will come out looking like a monster. Help me. 

Stan

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Jennifer516's picture
Replies 8
Last reply 9/3/2016 - 10:20am

Hi,

I'm new to all of this and was hoping someone would be able to give me some insight into ipilimumab treatment and what this means.

In 2015 my dad was diagnosed with melanoma, they operated on the area this was found and we assumed all was well. At the beginning of this year we then found out this had spread to the lymph nodes in his groin (having originated on his foot). The lymph nodes were soon removed and we were told they 'thought' he was in the clear. 

Having always been active and proud, it was around this time my dad stopped discussing the cancer with me and left me under the impression he had been given the all clear. I was aware he was undergoing some radiotherapy but had thought or possibly hoped this was just a precautionary measure. 

I've since came across some of his information to say he is now going to undergo treatment with ipilimumab however I'm unsure exactly what this means and can only get so much information from search engines. I've managed to learn this is mainly done when people have stage 4 melanoma, which suggests that I was incorrect in thinking he had been in the all clear.

Whilst I fully respect my dad's decision to keep certain information to himself, I'd like to learn as much as possible about the treatment. Also if it is in fact stage 4 melanoma, what exactly does that mean in this day and age in regards to treatments and severity etc.

Any information will be hugely appreciated. Thank you. 

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btcedarr's picture
Replies 9
Last reply 9/3/2016 - 10:06am
Replies by: kimberlyI, Jacklyn, btcedarr, Janner, Alce123, Anonymous, Bubbles

Someone mentioned that Janner has a forum for these stages, but I can't find it. Can someone post the link?

Thanks

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julia80211's picture
Replies 4
Last reply 9/2/2016 - 8:42pm
Replies by: julia80211, debwray

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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Mtnears's picture
Replies 18
Last reply 9/2/2016 - 7:07pm
Replies by: Mtnears, jennunicorn, Ed Williams, Becky, Fen, Anonymous

First, this community has been great for getting information as we've been learning about the road ahead of us.  Now that we have more information I thought I would post it and get feedback from others!

My wife was recently diagnosed with Melanoma.  49 years old, no family history that we're aware of.  Developed a nodule under a blue mark on her skin that she had forever, decided to have it removed and we found out the results.  

Since then, she has had a PET scan which was negative as well as a WLE and sentinal node which the pathology from that was all negative as well (phew).  Tumor was on her bicep, from a report I have it says:

Tumor thickness 7mm, Clark's level V, Not ulcerated, histology unknown, no evidence of metastasis and Serum LDH elevated.  Classification T4 N0 M0 AJCC Stage IIB.

So, based on that info they want to proceed with Interferon Alpha 2B for 4 weeks at a high dose, 48 weeks at a low dose.  

Doctor said that with a IIB it is debatable on adjunct treatment but that most recommend it, especially with her age and health being good, better to attack hard now.

Any comments / suggestions / expectation setting appreciated.  We have a couple weeks before she will start treatments.

 

Thanks!

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Hello everyone,

I was wondering if there was anyone out there that has run into Adrenal Insufficiency post Immunotherapy treatment? My treatment ended late May 2016 (Nivo) due to side effects and a recurrance in a lymph node. Continued to feel poorly and was put on Prednisone for 4 weeks 40mg tapering down to 10mg. Felt great and then a few weeks passed and began to feel poorly again. Finally last week, I was refered to an Endrocrinologist and I was diagnosed with Hypophysitis / Adrenal Insufficiency and have been put on Hydrocortisone 20mg morning 10mg afternoons. I'm feeling ok but not as good as when I was on the Prednisone. Better, just not 100%... maybe 85%. Also, Thyroid is weak so they put me on a low dose supplement. I'm an athlete and during this time I lost at least 40% of my muscle mass. Trying to gain some back but it's a slow tiresome process in my current state.

Was wondering if anyone else has gotten this and how they're dealing with it? Are you on Prednisone or Hydrocortisone? How do you feel? Any long term effects, things to watch out for? Were you able to get completely off the steroids?

Finally, does anyone have recomendations for Endrocrinologists that has experience in Immunotherapy side effects. There are a lot of good Endros out there but few with this experience.

Thanks!

Juan

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Joycem's picture
Replies 7
Last reply 9/2/2016 - 5:20pm
Replies by: Joycem, Bubbles, Ed Williams, Anonymous

Hi

While obsessing/second guessing over my decision today to decline adjuvant interferon recommended be oncologist, I came across this article that I felt was helpful, but I am unclear what "translational oncology" (in "the Oncologist-Journal of Translational Oncology") means. Is this a mainstream reliable source in your opinion? 

http://theoncologist.alphamedpress.org/content/10/9/739.full

I'm guessing since author is associated with Sloan-Kettering this is pretty solid source? 

There seems to be some murkiness as to whether I am properly staged at 2C or 2B according to my oncologist, (which significantly impacts my prognosis.) He said he was going to seek clarification from pathologist. I guess what is, is tho, and I don't think it would change my decision or follow up plan.

Best to you all, 

Joyce

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michaelinsocal's picture
Replies 6
Last reply 9/2/2016 - 3:23pm

Hello fellow melanoma warriors. Just a quick update on me.

DX stage 3A Nov '13. Been nearly three years, which is a bit of a milestone for anyone who's fought the good fight. 3rd year CT scans came back "all clear", NED. Praise the lord and the wonderful support from family and friends, my wife in particular and of course, this community which helped me coupe of all the initial uncertainty.

There is never a good time to get any type of cancer but things are changing for skin cancer. The awareness is spreading like wildfire and the research and options to fend this horrible disease off is expanding. Its definitely not the same fight it was 5-10 years ago.

Never lose hope and live life to the fullest.

Thank you, community, for all of the love and support.

Michael in SoCal

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