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 11
Last reply 4/13/2016 - 6:05am

I am starting Pembrolizumab next Monday.  I have a list of possible side effects, but I was wondering when they started?  I have two toddlers and am trying to figure out if I will need help the days following treatment.  Thank you so much for any answers or advice.

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GeminiBird's picture
Replies 2
Last reply 4/12/2016 - 5:01pm
Replies by: ashley_k, jennunicorn

I was diagnosed with melanoma in situ on the separate occasions and in 3 different areas. All the research I've done and info I've read point to certain risk factors including family history, severe sunburns, extensive sun exposure, fair skin, red hair, etc. I have dark hair, medium complexion, never tanned in the sun or tanning beds, no serious sunburns, and NO family history on either side. Anyone have a similar story and what have you learned about this?

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Marie with 4 boys's picture
Replies 2
Last reply 4/12/2016 - 4:50pm
Replies by: ashley_k, jennunicorn

I had my WLE a week and a half ago (biopsy said in situ), and had my return with the surgeon today. We discussed pathology report. Good news - it was all in situ (biopsy said extended to the margins). Bad news, the in situ extends microfocally to the tips and lateral margins. This is in a giant congenital nevus that is fragmented like a large freckle/mole area on my arm. So, I'm now to see a mohs surgeon and a plastic surgeon to discuss my options. My surgical oncologist (who only deals with melanoma), thought the entire nevus will most likely need to be removed, and skin grafts done. The nevus is huge - covers from elbow to shoulder and half way around my arm (appx 11 in x 5 in). Anyone here had large areas removed and skin grafts? Or any other thoughts for me? Thanks so much.

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Hello! 

I thought some of my LA mel friends would be interested in attending this symposium that AIM at Melanoma & The Angeles Clinic are hosting.  Lots of awesome docs and topics! 

https://www.aimatmelanoma.org/living-with-melanoma/patient-caregiver-sym...

Best,

Katie 

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Mat's picture
Replies 11
Last reply 4/12/2016 - 10:47am

So I had my first scans since I started on the ipi-nivo combo in January.  I received the first 3 combined infusions, but then had diarrhea that required the use of prednisone to get it under control.  Out of an abundance of caution, we paused the fourth combined infusion and I moved into the nivo-only portion of the treatment (had my first nivo-only infusion the same day as my scans).  I'm now 11 weeks into the treatment.  My scans were stable--nothing new and no change in my existing tumor burden (which is considered relatively low--but could always be lower!).  I was hoping for better (and continue to hope for better), but I'll certainly take it.  I feel very fortunate to have the opportunity to even try this treatment (which was only FDA approved shortly before I started).  In the meantime, my kids--who were 4 and 2 months at the time of my Stage IV diagnosis in 2013--will be 7 and 3 in a few weeks.  While I would love to get this melanoma monkey off of my back, I'm grateful for each day.

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JohnA's picture
Replies 17
Last reply 4/12/2016 - 1:50am
Replies by: DZnDef, Maria C, jade1111, JohnA, Anonymous, Mat, Ed Williams, MoiraM

My wife was diagnosed with anal mucosal melanoma in 2014, post-surgery did cisplatin+temodar as adjuvant therapy based on the results from a Phase II trial in China.  The chemo regimen was very hard on her health; she's in her late 40's. 15 months later she's gotMETs in lungs, liver, and bone. We have a elementary-school aged son.

She's c-kit+ so now we're likely faced with options to Imatinib (Gleevac), or Ipi plus Nivo.  One possible scenario is to try Imatinib first and see if the tumors respond, since side effects are supposedly less intense than ipi/nivo. Progress to ipi/nivo if and when its necessary.

The doc says if untreated, she might have 6-8 months left. So, after a really hard 6 rounds of chemo last year, she's justifiably wondering if she should try a naturopathic remedy instead.  The logis is that if she does the combo and it does not work, it will likely make her sick and she'll ruin the final months of her life by being super sick from side-effects. 

She's always been a very healthy eater, but has for 9 months now been extremely strict on diet - very little meat, no dairy, no alcohol, lots of green veggies, juices, etc - , exercise, rest, meditation, acupuncture, massage, sound healing, and other stuff like this.  She worked with Dr. Block in Chicago and he gave her a diet, exercise routine, and supplements, which she's mostly done all of done for 6-9 mos.

We're still exploring options, but it's quite possible she does a drug therapy plus some naturopathic regimen.

So, 3 questions for you:

1) I looked back through the archives and did not find many suggestions for naturopaths or maaster nutritionists - does anyone have any?

2) any advice on the drug options - imatinib vs ipi/nivo? and anyone who did cisplatin and ipi/nivo, any comparison between side effects for these?

3) does anyone else have a similar quandry about trying a treatment that could make you sick for your remaining days? How can I best help her through this?

Thanks for your help!

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laulamb's picture
Replies 6
Last reply 4/11/2016 - 11:06pm
Replies by: Janner, Mark_DC, SamS, Teej, Anonymous, Marie with 4 boys

I am having a WLE and SNB done on Thursday.  Could someone please let me know what I can expect as far as recovery time?  I'm assuming I would be able to be back to work on Monday.  I work at a desk. 

Thanks so much and prayers for not spreading to lymph nodes are greatly appreciated.  

Laura

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Hikeratheart's picture
Replies 1
Last reply 4/11/2016 - 7:36pm
Replies by: Janner

Hi all, 

I saw my Derm about two suspicious spots , one a blister on my toe, and another, spot on the inside of another toe. I am happy I went in, and the Derm confirmed, no reason to remove, but keep a watch on them. I do have an excellent Derm, who takes the time to do through checks. I also know I must be diligent. I have stage 2b and had a tumor surgectly removed last July.   My question: when getting life insurance do I need to report I have (had) cancer, or because it was removed, it shouldn't matter. I ask because my premium is higher until I am 1 or 2 years NED.   Thoughts?    Thanks  to all of you!

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Rita and Charles's picture
Replies 4
Last reply 4/11/2016 - 7:24am

We r on vacation and although covered adequately/spa 70 my husbands nausea has really derailed him. He wanted to see Caribbean waters as bucket list but his health has been all nausea. Anyone else suffer from this?  Thanks. 

Rita

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sandifeet8562's picture
Replies 9
Last reply 4/10/2016 - 4:53pm

My son finished immunotherapy in January, and current scans are clear. However, along the way he has lost the function of his thyroid, on synthroid. Now he is currently experiencing side effects with his pancreas and my be developing type 1 diabetes. My question is, what otehr side effects might we encounter, anyone else having trouble with their pancreas? We are so happy that the disease is gone but these setbacks are taking a toll on moral. Thanks

michele daly

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/10/2016 - 3:57pm
Replies by: jennunicorn, Anonymous

I have a mole that is changing color. The last pic I can find of it is from late 2014, so about 18 months ago, and it was a barely-there brown, like most of my freckles. Now it's a much darker brown and darker than anything else on my arms. The thing is...it's only 1mm, so I don't know if it's even worth having it looked at. I'll bring it up at my next skin check regardless (6 months from now), but does it warrant making an appointment sooner? What would you do in my shoes?

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Maria C's picture
Replies 4
Last reply 4/9/2016 - 9:34pm
Replies by: Maria C, Mat, Bubbles

Hi friends,

So my 3-week break from blood draws / cancer center visits was up today, as I wind down from a prolonged bout with pneuminitis after my 4th & final combo treatment a couple months ago. Scans on Feb. 18 showed no new brain mets or new tumors anywhere of any kind, the first time in 9 months since my diagnosis that there was no new activity. There is a lingering tumor at the original site that has gone from 9 ml to 6 ml to 3 ml at the last scan, but that's it. Next set of scans is scheduled for April 19.

My doctor and I discussed whether or not I should re-start the immunotherapy now with the Nivo maintenance treatment. If there's any new tumors anywhere on the 19th, we will for sure, but if it's a clean scan/MRI again, it's not clear what the next step should be. Apparently there are no studies or trials done that confirm Nivo is needed for maintenance, and from these melanoma boards it sounds like oncologists are making their own calls based on intuition and anecedotal patient experience rather than any clearcut scientific evidence.

I am juggling a few concerns here:

1) the toll so far on my body from the side effects, as my onc says I have been hit particularly hard and we have yet to know the cumulative effect; so far adverse effects have included retina detachment, liver inflammation, pneuminitis, skin rash, significant hair thinning, and eyebrows & eyelashes that are all white (yesterday I was referred to as an albino...)

2) the long-term effect on the immune system of prolonged immunotherapy treatments as pointed out in a recent conversation started by Ashley here:

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

3) the above weighed against the aggressive nature of mucosal melanoma that has already spread to brain

I would love to hear from others advice, thoughts, further doctor comments, etc.

Love the "think tank" nature of this patient board!!

Peace & best,
Maria

 

 

 

 

Maria - Stage IV, MM, partial responder to ipi/nivo combo

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khubes's picture
Replies 2
Last reply 4/9/2016 - 3:16pm
Replies by: Mat, Maria C

Hey all, I came across this article and thought I would share. http://www.onclive.com/web-exclusives/expert-always-use-frontline-immuno...

 I know Mat mentioned looking for response rates for people on the combo after failing pembro - it looks like Dr. Luke is going to be running a trial looking into this, as he is quoted saying, "I am going to launch a clinical trial in which we are going to treat patients who received PD-1 as a single agent who progress with the combination of pembrolizumab plus ipilimumab at a low dose. We want to determine if the combination is just as good in second-line as first-line, because then we can avoid exposing the patients to the side effects until we know that they need them." 

We may have to wait a bit longer to get this data but at least it's on their radar!  

Best,

Katie 

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WithinMySkin's picture
Replies 1
Last reply 4/9/2016 - 1:59pm
Replies by: jennunicorn

I hadn't heard about this, but definately a good read for the men on this board. And no, this isn't spam!

http://m.nationallawjournal.com/#/article/1202754509492/More-Than-100-Vi...

WithinMySkin

www.Withinmyskin.com

 

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Anonymous's picture
Replies 3
Last reply 4/9/2016 - 11:55am
Replies by: Anonymous, Janner

I'm considering getting a second opinion on my pathology report. The report came back as a junctional nevus with severe atypia, wide excision recommended. I want a second opinion to make sure that there's no way it's a melanoma. I've had a stage 0 years ago. Am I being overly paranoid? Should I just accept that the lab knows what they're doing and do the excision?

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