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.

Expand/ Collapse Topic
 
Replies By
View Topic
J.bun's picture
Replies 12
Last reply 2/22/2017 - 5:10pm

I’ve been eager for my first post in this community, and felt like I needed to find the “right” way for myself.  Since my initial IB diagnosis in April 2015, I’ve been an avid reader/lurker on this board.  Like so many of the “early stagers,” I felt shocked – then relief it was only 1B – and concern for the future recurrence.  Unfortunately, these fears were recognized when I noticed a lump in my groin at the site of my sentinel node biopsy this past Thanksgiving.  Within one week I had an excision and PET CT scan - 2 nodes and skin involved.  I go to the Inova Melanoma specialty clinic in Northern Virginia - right outside DC.

Now, less than 100 days since this diagnosis, I have been on 3 treatments (6 total drugs - Ipi/Nivo; Zelboraf/Cotellic; Tafinlar/Mekinist); prednisone; and encountered an 8-night hospital stay (severe allergic reaction to Zelboraf - known as DRESS- extremely rare and potentially fatal).  Most importantly, my PET CT scan this week is showing that the drugs are working! 

I am writing all this to thank all you contributors/active posters - and hope to share my experiences and support each other too.  I wouldn't have been able to understand everything I went through and the questions to ask had it not  been for this board.   

I am a 33 years old, I am not writing this to raise fears - but I believe information can be empowering, and facing reality is far more important than to "keep your head in the sand."  We all want the same thing, and share the same goals.

- J.

Login or register to post replies.

Melodygrace's picture
Replies 2
Last reply 2/21/2017 - 8:08pm

Hi all,

Has anyone here ever had a melanoma that was first misdiagnosed as a dysplastic nevus?  I had a dysplastic nevus removed last year.  It had to be sent in to UCSF for a second opinion because the first results were inconslusive.  This, combined with the fact that a dysplastic nevus looks similar to melanoma, has me wondering if it actually could misdiagnosed.  

I know someone who had a mole removed six years ago, results came back as a spitz nevus.  They got a surgical excision and then got on with their life.  However, six years later, this person discovered a lump under their arm.  It turned out the spitz nevus diagnosis was wrong and it had been melanoma the whole time.  

This made we wonder if this happens with dysplastic nevus moles as well. I have a family history of melanoma, so I am just a little concerned.  I did have the mole surgically excised when we found out it was dysplastic. 

Just curious to hear if anyone has any personal experience with this.

Thank you!

 

 

Login or register to post replies.

Replies by: J.bun, jennunicorn, Mark_DC

Hi,

Can anyone explain the Ipi infusion process and length of time for the infusion?

Does Ipi get infused through 1 catheter site or multiple?

Does the infusion take a few minutes or more than an hour, or multiple hours?

Anything else about the infusion which you recommend(e.g. Bringing music and headphones, bringing a book, eating food beforehand or fasting beforehand)?

 

thank you

Login or register to post replies.

Dreaf01's picture
Replies 7
Last reply 2/21/2017 - 4:49pm
Replies by: Anonymous, cancersnewnormal, zfishberg, Nemesis, Janner

Just want to know why scans are not recommended for stage 1b/2A. My anxiety is getting the best of me and am wondering if I should be requesting them. I had stage 1b melanoma removed from my right upper thigh. Negative margins and negative nodes.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 2/21/2017 - 4:28pm
Replies by: Anonymous, BillMFl, jennunicorn, Fen

I'm waiting for my biospy appointment currently. I've sever depression from this as I'm assuming the worst. I just know I have nodular melanoma (black dry raised mole) it's 2mm in diameter. I don't know how to cope with this anxiety, especially when looking to my little girl tears can happen easily also I'm getting strange headaches which let me think that it's now in my brain. How i can prepare my self for the diagnosis? Any advice would be appreciated.Thanks

Login or register to post replies.

Michelle820's picture
Replies 4
Last reply 2/21/2017 - 2:12pm
Replies by: BillMFl, Michelle820, Janner

Hello all, just curious if anyone owns a dermoscope? Would you think it helps during exams? I have been told by my specialist, that I have a lot of "funny looking moles". Ughhh. He insists that my husband help me with my monthly skin checks-which he does-however, I don't think he gets the importance. I'm thinking of purchasing my own dermoscope. 

If you own one, any specific brand that's recommended? I understand they can be pricey but if it helps calm my nerves it's worth it in my opinion. Also, I have seen them as an attachment to an iPhone. ???

thank you for your input:)

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 2/21/2017 - 2:07pm
Replies by: geriakt, Anonymous, jennunicorn

Hello All,

I was recently diagnosed Stage 1a at a depth of 0.23mm about two months ago. I am still dealing with the stress and anxiety from this diagnosis, but I want to help beat this thing for all of you stage 3 and 4's out there. I feel so bad when I read all of your stories and what you are going through it breaks my heart. I realize I am in a very good spot with my prognosis, but am still scared. Anyhow, I wanted to start donating to research to help cure this dreadful disease. I have been on so many websites and I am just not sure which to donate to. Where do you guys think the majority of our money should be going? I wanted to invest in breakthrough treatments and such that have been made in melanoma, not necessarily a site that spends all their money on education. I think research is where I want to donate my money to and wanted to hear your guys thoughts on what you think is the best place to donate. Let me know your thoughts, thank you. 

Login or register to post replies.

jennunicorn's picture
Replies 6
Last reply 2/21/2017 - 11:34am

Wondering if anyone else has had their blood tests show anemia but when tested for iron deficiency found you're not iron deficient?

I dealt with iron deficiency my whole childhood, had to take the grossest medicine for many years. So, when my onc said anemia, I assumed I was back to being iron deficient. But, tests show I am all good with iron. My onc said she will test for other things next time I am there, in 2 weeks. Just wondering if this is caused by the treatment and if anyone else has experienced something similar?

 

Jenn -  IIIC - currently doing Ipi/Nivo (Yervoy/Opdivo) 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 2/21/2017 - 3:01am
Replies by: Anonymous, casagrayson

Could you have nodular melanoma without recurrence? I think I'll be diagnosed soon and I'm so scared, it's a jet black raised mole which appeared during my pregnancy:(
I'm in a country which this disease is extremely rare and none can understand me, I feel like I can't find support at all
Even when I mentioned this to doctors they didn't care and feels I'm just paranoid:/

Login or register to post replies.

Aloha14's picture
Replies 4
Last reply 2/20/2017 - 11:45pm
Replies by: Aloha14, Anonymous, debwray

I'm on vacation and got the chills and then noticed the largest seroma on my leg was red. I went to the ER and they did an ultrasound and said there's fluid in there, and the doctor thinks I have cellulitis. Gave me IV antibiotics and then a prescription for pills. I wore the compression pants on the plane and everything seemed to be ok until last night. I have a call into my surgeon. I wonder how I could get an infection when the skin isn't open?

Login or register to post replies.

Judy Steven's wife's picture
Replies 7
Last reply 2/20/2017 - 11:35pm

HI everyone, my husband had his immunotherapy Feb 8, on steroids again Feb 10 because of brain edema, and now we're just home again and waiting for things to get better......which is not happening. Steven is very fatigued and got mouth sores, very painful. Didn't drink enough and ended up in  ER for dehyration. Gets upset with me when I want him to drink more, which is also frustrating. He's feeling miserable because of fatigue and this mouth pain. Any ideas on what to do for mouth sores? We got a miracle mouth wash from the doctor (w/ lidocaine), but is hardly numbs the pain. I also made a saline solution, with some tea tree oil to use a few times a day, but sores are stil there, and more are coming. Makes eating almost impossible (I blend soups). How do you keep your spouse/friend/family member to eat and drink when they feel so miserable?

Judy Steven's wife, who is stage 4, ipi/nivo starting mid February

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 2/20/2017 - 7:06pm
Replies by: Anonymous, skousal, MichelleRHG, debwray, momof4boys

Hello, 

Does anyone have any advise on how to unclog the JP drain from a complete lymphnode dissection. I have stripped the drain hundreds of times with no luck, I can see the tissue clogging the drain. The fluid is running down my leg.. please any help. 

 

Login or register to post replies.

_Paul_'s picture
Replies 17
Last reply 2/20/2017 - 6:45pm

 I handed up needing another operation.  I had another drain tube put in to mdrain the fluid from my chest. I am in the ICU waiting to get moved to the floor. I have to get healthy enough to get into the clinical trial.

 The good news is that I am healing. There is hope I will win the race and make it into the clinical trial in LA.

- Paul

 

To exist is beyond fantastic.

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 2/20/2017 - 5:50pm
Replies by: AshleyS

Hi All,

I am currently 16 weeks pregnant, and was diagnosed with a T1a tumor (.8mm, no ulceration, no mitosis).  I have gotten two different opinions from two oncologists regarding an SLNB - one, says that we should do it but wait till after I give birth (7 months from now).  The other, says it is fine to do during pregnancy and he wouldn't delay.

Given the seriousness of this disease, and the fact that I don't want to wake up in 7 months with stage 4 and unable to care for my baby, I am leaning towards doing it now.  BUT, I have read a great deal online that suggests there are risks to the baby (especially since my melanoma was on my leg, so the lymph nodes will be in the groin area).

Does anyone have any thoughts to share on this?  Woudl you do the SLNB now, and assume the risk to the baby, or would you wait since the liklihood of it having spread is so low given the original tumor stats?

I'm so torn and lost, so appreciate any insights/advice/experience you may have!


Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 2/20/2017 - 5:43pm
Replies by: zfishberg, J.bun, Anonymous

Has anyone else experienced only fatigue & tiredness while on MEK/TAF?

Login or register to post replies.

Pages