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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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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Marie with 4 boys's picture
Replies 6
Last reply 4/13/2016 - 9:48am

I'm wondering what you all have found useful in helping your kids deal with your diagnosis. I'm especially interested in young children. My 3yo has no clue (which is fine with me), my 9yo is pretty OK with things, but my 5 and 7 yo are having the toughest time. Fortunately, my diagnosis is good, just lots of surgery ahead, but I'd still like ideas if you have them. Thanks.

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Gene_S's picture
Replies 21
Last reply 4/14/2016 - 4:26pm
"The Truth About Cancer: A Global Quest" is an incredible, eye-opening look at what's really possible and happening now.
 
More than 1.2 million people are signed up to watch this life-saving 9-part series starting Tuesday.

 

Don't be left out. Enter your name and email now to see the entire series -- for free.
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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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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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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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Mark_DC's picture
Replies 20
Last reply 4/20/2016 - 4:06pm

Dear Forum members,

Thank you for creating this forum -- have been reading the last few weeks since my Stage III diagnosis and surgery to remove melanoma on my leg (on crutches and home two weeks). Sad that I have to join you (!) but also amazed at your stories and also all the help you are offering each other. Through you I have learnt so much about this disease (Celeste's guide to all the abbreviations helped lots, she may not have realised, plus others' links to videos and talks).

I am sorry to start my first post with a question, and not with cheering on fellow sufferers as they await their scans, have been praying for them and thinking of them though, the last few weeks. Has been hard for me to write and I have been putting this off, but I need your help and respect your advice.

Melanoma on my lower left leg in 2014 recurred in February 2016 (am now T2aN2cM0). Fortunately my SNLB was negative both in 2014 and again in February. Had not expected this to recur :( Was assuming that it had been removed in 2014, odds were in my favour I thought! Now because it has recurred I am considered IIIB, although my lymph nodes are negative thankfully and no mets detected on CT and MRI. Live in DC and am being treated by Dr. Gibney (and I think Dr. Atkins too).

My question is, what should I do now? Should I take adjuvant therapy? I have been offered:

- Clinical trial between pembro and interferon (both adjuvant)

- Ipi as adjuvant

- Watchful waiting

It is very hard for me to decide. To me, the downside of the clinical trial is the interferon arm -- forum members seem to be pretty negative about this, about its efficacy and the side effects. What if I get placed on the interferon arm? Yet I know some of you are taking this route. And if it helps, then it could be worth it. Until recently, I would have preferred a clinical trial vs. ipi but this is not available. I understand there is a trial of pembro vs placebo, but not close to me (I could travel if needed, and know that many of you do).

I was going to take ipi as adjuvant, but when I sought a second opinion at the doctor noted the side effects, including in the worst case death (1 percent). The second opinion also cautioned me that side effects from ipi (maybe even from pembro) could limit my clinical trial options in case I move to Stage IV, which I kind of fear is likely given my progression from I to III. I might be prevented from taking some combination therapy clinical trials at Stage IV. I know some of you are taking this route though, so would welcome your advice, why did you decide this over watch and wait?

Final option seems tempting, my job involves international travel, and taking immunotherapy would kind of rule this out according to my second opinion doctor. If things flare up he thinks I need to be close to my doctor.

But I also dont want to duck out and take the "easy" option. I have a good job and I will not be penalized for taking treatment, I do not have to travel, it will mean taking a back seat for a while, but thats OK, my job will want me to do whats best for my health. I should make every effort to fight this thing and ideally kill it off. But is there a good way to do this? Do the medicines really work for III (my second opinion doctor suggested the immunothrapies worked better against solid tumours than cancerous cells in the bloodstream, because the tumours themselves have immune cells or something like that). Should I instead watch and wait, hope not to go to Stage IV, but if I do go to IV then try to fight it like many of you on this forum have? Or should I be pro-active now (but only if it helps, right?)

I meet my doctors on Wednesday and we need to make the decision then or shortly thereafter. I am very confused and would welcome any advice. They seem to recommend the clinical trial, but I am not so keen on interferon although on the plus side it does seem a known quantity -- I might be depressed for a year and buy one year, but side effects not disastrous, right?

I again thank you for reading this and also the many useful posts on this forum, and also the amazing stories, happy and sad, which always move me.

Good luck

Mark

 

 

 

 

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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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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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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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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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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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Anonymous's picture
Anonymous
Replies 1
Last reply 4/8/2016 - 11:23pm
Replies by: jennunicorn

Hello all I am Samuel i'm 22 years old and recently the mole on my chest began to fatten up and become 3-dimensional rather than flat and had a black circle appear on it. Could I have this condition?

Here is photos of my mole:
http://s14.postimg.org/o0my4p3tt/image.png

Also to note: I was in a hot country back in August and got sun burnt on my back. I am also very pale.

Thank you!

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So the T-Vec injections I have been getting don't seem to be working on their own and my oncologist has decided to start me on Opdivo. I have read all of the side effects from their website, but I would really like to know what other patients have encountered being on this drug. 

Got PET scan results back and a spot was found on my left breast that now I am having to get biopsied to see if it's breast cancer or my melanoma spreading, so I'm not sure if the above treatments will continue, but I already have one scheduled for the 26th, so any help wouldl be greatly appreciated. Thanks in advance. 

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