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 6
Last reply 2/11/2016 - 10:55am

Hi. I had a non pigmented melanoma Insitu in 2009. Initial punch biopsy returned a finding that it was a Nevis but had no cancer cells. The mole was removed and path determined it to be an ameloritic melanoma in situ. Margins of 5 were taken. I have a new 6 months  non pigmented "growth" approx 6 cm from original site. It looks identical to the original. Pale pink.. I cannot get to see my specialist until Nov (her earliest app accord to receptionist). My question is, can Insitu melanoma  recur near original site? Am I just over worrying?

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Angsta39's picture
Replies 2
Last reply 2/10/2016 - 6:36pm
Replies by: Angsta39, jamieth29

Went to see derm in December and pointed out two red bumps that had come up quite suddenly a few days before my appointment close to my original site. Derm did a biopsy and it was melanoma. Since then, I have see oncologist and melanoma surgeon and they have numbered and taken photos of the new bumps. When I saw them on 1/26/16, I had 12, and when I counted them two days ago, there are 32. I am sceduled to start T-VEC injections for each lesion at the end of this month. I was wondering if anyone else has had this done and what kind of side effects I may be in for, like can you drive yourself home after the injections, etc.

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Maureen038's picture
Replies 10
Last reply 2/10/2016 - 5:02pm

Hi All,

    My husband has been stage 4 for three and a half years. He has had many treatments and he was almost NED last spring from the Ipi/Nivo trial when he had two new lung nodules. After seeing several top melanoma specialists only one had a novel idea. At Sloan Kettering they are using old chemo drugs that are showing results especially after using a pd1 drug. Bill had two pill doses of DTIC and while he had very good scans, he was in the hospital for 9 days due to neutropenia. After that we found out he had the her-2 mutation which is extremely rare in melanoma. He has had 2 infusions of TDM1 which we have had to pay for out of pocket because it's not FDA approved for melanoma(very, very expensive). We just had his first scans and we are so thrilled that his lung nodules have shrunk and his fluid in his lungs have gone from moderate to mild. We are SO thrilled and feel that you should always keep fighting!!! We know we're not out of the woods, but we feel so happy that we have made progress. Life is so precious and we plan on living each day fully!!!! We wish all of you the best!!

Maureen

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Rita and Charles's picture
Replies 5
Last reply 2/10/2016 - 11:07am

Had another PET scan yesterday, as well as blood tests.  No result yet on PET but the blood shows higher LDH......his have been traditionally around 400........I am so uneducated on what LDH indicates, what is a good number , what is a scary number - can anyone share your knowledge?

Rita

Rita

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Replies by: BrianP, Bubbles, nlac26, Mat

Hello everyone! I am curious if anybody out there has been in this clinical trial? I am a Stage 4 patient who completed 4 doses of Ipi ( October 2015 - December 2015) and was not a responder. I did 2 follow up Pet Scans after treatment on Dec 17th and January 28 which showed my main tumor (chest wall) was still growing..and now I have several subcutaneous tumors around my upper torso, but mainly seeming to favor my left side of my body. I have a great melanoma specialist who has been working with my husband and I but is now recommending I move forward with a clinical trial. I shouldn't be surprised at how invasive the pre-testing for a clinical trial is but sometimes it feels overwhelming. I handled the Ipi really, really well with very little side effects besides some minor itching but I always get nervous when it comes to new drugs. This trial includes taking the pills (epacadostat) every day and the infusion of nivolumab every two weeks. Has anyone been through this? Side effects? Reponses to the treatment? We've been going through this for almost a year and I feel like we're starting to grasp at treatments because we keep getting let down every time I have a scan update. Very frustrating but I'm also very determined to WIN! any input would awesome! Many thanks and love! Niki

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Tessie64's picture
Replies 4
Last reply 2/9/2016 - 2:45pm
Replies by: ldub, ashley_K, Janner

I had a biopsy on my toe about six weeks ago, which came back as moderately atypical. I actually go tomorrow for further excision. But over the last 2 days, there has been a black growth developing on the punch biopsy sight. It's already as large as the original mole (5 mm). Could previously missed cells develop that quickly to melanoma?

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DZnDef's picture
Replies 4
Last reply 2/9/2016 - 1:35pm
Replies by: DZnDef, jamieth29, khubes

Hi everyone,

Things are moving fast with my brother.  His scans show numerous mets everywhere (easier to list where they aren't) including his brain.  The largest one in his brain is 1.2cm.  He has no symptoms.  The report doesn't list a total count.  He is with Kaiser and they just booked him an appointment to meet with a radiologist Wednesday (two days from now).  He hasn't even met with an oncologist yet (was supposed to be Friday but pushed back to the 23rd).

Anyway, I know individual radiologists have their own way of operating so I thought I would ask first here:  what are the radiology options for brain mets these days?  Pros and cons to each?  Personal experience?  Any and all guidance and information will be much appreciated.

You guys are awesome!

Maggie - Stage IV (lung mets unknown primary) since July 2012

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Please pray for my husband. Was scheduled to start IL2 tomorrow. Was admitted to hospital yesterday and not strong enough for treatment tomorrow. Multiple tumors in neck and various places, but larger ones near stomach and in small intestine have been causing severe pain last month or so and had lost almost 30 lbs since christmas which he didn't need to lose. Admitted due to not being able to eat or drink due to tumors pushing on those organs...

Meeting with surgeon and our melanoma team tomorrow. HaS had 2 small bowel resections in last 6 mos...not sure how many more he can take.

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melj's picture
Replies 7
Last reply 2/9/2016 - 4:31am
Replies by: melj, JuTMSY4, Anonymous, Bennickliz, mms7angels1

Does anyone have any experience of how bone mets present , particularly in the long bones of the arm ?

I've been having pain in my upper arm for two months, usually associated with movement. Thought it was a triceps strain brought on by swimming. But despite rest, ice, ibuprofen and physio the pain and discomfort persist. Deep tissue massage eases the pain but it returns within a day. Wondering if it could be a bone met as it's about 3 inches from a primary where I had a local recurrence excised last October. I'm stage 4a just started Keytruda.

Any thoughts ?

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Cynlee's picture
Replies 3
Last reply 2/8/2016 - 7:29pm
Replies by: Cynlee, JuTMSY4, Janner

Ok this may sound stupid but I'm only stage 1a from a spot on the top of my foot. The primary was about and inch or so from my big toe. I've been having pain in the joint and it feels as if the second toe joint is hurting also. It hurts to walk sometimes and at night. I really feel that my mobility is limited in the big toe joint. This has been going on for over two months. What's the chances of such a low stage going to the foot bones?  I should say also the spot on my foot came up from nothing to melanoma in less then 10 months. I thinking maybe I should get an X-ray but I don't want to look paranoid. 

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Scooby123's picture
Replies 9
Last reply 2/8/2016 - 1:26pm
Replies by: Scooby123, Anonymous, MoiraM, Ed Williams, melj, Bubbles

Hi all,

I would like to know if now the combo treatment is available in some country's , if you have had ippi would you not get the combo ipp - nivolumab . We have not approved combo in UK as yet I think September I believe correct me anyone if I am wrong . But was wondering now that combinding treatments is better would you not get it if you had it on its owne. Plus you would have had to respond to the treatment as well otherwise they would be no point giving you together if you have not responded to one. I am not sure how it all works but would love some feedback from anyone who does

love and prayers to all us fighting and our caregivers

scooby123❤️

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jennunicorn's picture
Replies 21
Last reply 2/8/2016 - 12:16pm

Does anyone have a great sunscreen they use every day that doesn't feel like they are wearing sunscreen? It feels like a neverending search for the right one. I have sport ones for when I am more active and don't care if I feel like I am wearing sunscreen. And I have face moisturizer with sunscreen in it that I like. But, finding that one for the whole body for just regular every day use seems difficult. I also hate the smell of most sunscreens. My derm recommended EltaMD sunscreens.. they are kind of expensive, not too bad, but before I go buying some, if anyone has tried it, do you like it for every day?

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scots's picture
Replies 2
Last reply 2/8/2016 - 11:44am
Replies by: scots, MoiraM

I have been told I need to get in Treatment as soon as possible, but where's the sense of urgency on the doctors / hospital part.  If I do not like what I here or they have limited or no options I have to start the whole process over. Contact a new specialist for an appointment go through all the paper to get files and reports and CDs of scans to the next doctor and all the while time is passing through my fingers .  I do not know why it's so hard for one doctor to refer you to another doctor and pass on all the records I spent weeks sending to them.  I know it's all on me but it would be nice to have some help and and cooperation between doctors. I have worked with my oncologist in town who is not a melanoma specialist.. He referred me to a Duke specialist. I'm waiting to hear if I qualify for a trial at Duke. I have also talked to NIH and sent them all my records. They said the TIL treatment is too risky for me. I also have an appointment at MSKCC in two weeks. Now they have all my records. With all that said I'm waiting.......I have liver mets after five years of NED. I have tried ippi and Opdivo but it did not work. I do not have the Brad mutation, I have a mekmutation which I have been told is rare.   I have filled out my profile if you would like to see detailed information on what I have done. I'm great full to a have great place like this to vent and find people in similar situations.

 

thanks,

scot

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Anonymous's picture
Anonymous
Replies 4
Last reply 2/8/2016 - 11:03am
Replies by: CHD, Anonymous

Hi, just wanting to see if there is anyone out there with vulvar cutaneous melanoma?  I have seen posts from several with mucosal-type but wondering about cutaneous.  Would love to hear your stories and what you have been treated with, and how you are doing.  Thanks for sharing!

Jackie

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