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.

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Hello and thank you for reading

4 days ago I found some blood whilst wiping after a pee... Only a thumbnail's worth. As I was on my way to work and late, I had a quick look, thought I saw a kind of soft bump and red pin prick.

Later that day (under self investigation!) I couldn't really find what I had seen earlier that day, the pimple thing. However, I did find a patch of 'pigmentation' /mole/freckle thing on the inner crease of my labia (minor) Sorry if this is too much info...but I am so scared :-(

So, this 'freckle' is about 3mm irregular looking, kind of banana shaped maybe? but not clear enough for me to see... doesn't seem raised at all... no evidence of bleeding either.

Kind of grey/blackish looking. Diificult to see in mirror myself. I have a couple of grey patch markings also on the opposite side that are not so dark.

I made an appointment to see docs. I went today, and she is referring me immediately. I am in UK, and they have fast forwarded me to specialist under suspected vulvar melanoma :-(((

I have been reading up on it all, trying to be 'sensible'... But the prognosis for these things looks grim. There is limited information available, and what I CAN find, ugh... It doesn't look good....Mucosal melanoma has a poor prognosis? 

I am 44, one 10 year old boy who is my life, and I cant stop worrying. I have had many heath complaints in last few years (Celiac, Graves) and I guess the last few years have been tough.

If anyone has any advice, or knows anything that might help... Sincerely would appreciate :-( Thank you

 

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RitysMom's picture
Replies 3
Last reply 3/30/2017 - 3:52pm
Replies by: BrianP, RitysMom

I am with my daughter and son-in-law in Houston. She had her first appointment on Monday with Dr. Tawbi. He was wonderful, very thorough, and answered most questions before they were even asked. He suggested two options for Kristine: a) join a clinical trial at MDA; b) begin ipi/nivo at home (Alabama). His preference was the clinical trial due to the toxicity of ipi/nivo, but knows it would be quite an inconvenience to come to Houston every three weeks. Before any decision can be made, however, he wanted to see what's going on in her brain. She had an MRI yesterday, and we meet with him today for the results. One question we didn't ask and he didn't clarify is what would happen if brain mets have returned. Does that limit her options?

Thank you,

Cindy

Cindy 

Mom of the beautiful Kristine

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/30/2017 - 11:57am
Replies by: youngann, Anonymous, jennunicorn, Nanners10

I apologize if this is inappropriate to ask, but I am curious to know what people are typically being charged for ipilimumab treatments. I was told it would be 30,000.00 per treatment. Imagine my dismay when the bill arrived and the charge for two treatments- just for the ipi- was 353,958.88!  Can this possibly be correct? 

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/30/2017 - 12:01pm
Replies by: debwray, UBContributor, Anonymous

Wondering the thoughts of so many helpful people on this forum. Tumor size significantly went down after first set of scans while on Opdivo. Second set shows tumor at the same size but SUV dropped about 10 points (to a 5). Third set shows tumor at same size but around 2 max SUV. 

 

Is is it possible tumor is officially dead and it is necrotic or scar tissue? Or would the tumor have to keep shrinking down to almost nothing?

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mrsaxde's picture
Replies 6
Last reply 3/30/2017 - 12:43pm

Hi Everybody!

If you saw my last post, you saw that my recent PET scan revealed that the spots on my skin and lung nodules in my right lung did not light up at all. But what did light up was a spot on the hilum of my lung, the precarinal lymph node that is nearby, and other lymph nodes in my chest. All other organs are clear. I was devastated. I have been receiving Keytruda since July 2015 and I thought I was on the path to being disease free. After hearing the results of the scan I began to think that things were no longer going my way.

Then, yesterday, I met with the pulmonologist my oncologist referred me to for a biopsy of the spot on my hilum and the lymph node. During my conversation with him he mentioned he had recently done the procedure on a woman who had melanoma. Then he told me this: "It turned out she didn't have melanoma. The biopsy revealed it was sarcoidosis.

When we got in the car I said to my wife, who is a registered nurse, "I've heard of sarcoidosis, but I don't know exactly what it is." She responded, "It's an autoimmune disease."

My ears immediately went up, knowing that Keytruda can sometimes cause autoimmune disease. Last night I Googled the words "Keytruda and sarcoidosis." Low and behold, I found two articles that mentioned recent cases of sarcoidosis have been identified in patients receiving PD1 checkpoint inhibitors. One patient was getting Keytruda, the other was receiving the ipi/nivo combo. I also found a medical journal article that said sarcoidosis can mimic lymphoma on PET scans.

So my biopsy is a week from tomorrow (Thursday). I'm trying not to get too optimistic because the letdown would be pretty bad. But now at least I know that whatever is going on isn't 100% guaranteed to be more cancer.

--Bill

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/30/2017 - 10:42am
Replies by: UBContributor, Anonymous

For those of you who've found a lump in your groin, did it just appear over night or did it start out with pain and tenderness?  My stage 1 was found on my upper left arm last year. Clear margins all good supposedly but yesterday morning I woke up with a soreness and tenderness right at the top of my pantyline. Not low in the groin but at the top on the same side where the melanoma was. Just wondering. Thanks

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iskitwo's picture
Replies 4
Last reply 3/30/2017 - 12:29pm
Replies by: iskitwo, Anonymous

I was diagnosis with stage 3 in Oct 2016 I opted for scans and close watch. I had my first set of scan at MD Anderson in which they did CT and Brain MRI. I am transitioning to a melanoma specialist closer to home for follow up scan and they are suggesting CT only every 3 months. They said that insurance will usually not pay for brain MRI unless you are having headaches.  I am just wondering what some of the others that are stage 3 are doing as far as follow up scans?

Missy

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VIve's picture
Replies 1
Last reply 3/29/2017 - 12:08pm
Replies by: Anonymous

Hello everybody,

I'm neely diagnosed with metastatic melanoma stage IV, spread in the liver. Since a month I'm on debrafenib/MEK (300/2 mg per  day). Feel good for now. I was told in the hospital that while on this chemo therapy I cannot have a surgery. Does snybody know if this is true? Because I'm not sure if I have to remove my ovaries.  The CT statement says melanoma or ovarian cystuadenocarcinoma.

I haven't been very often in this forum but some comments encouraged me a lot. 

Many thanks!

Victoria

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/30/2017 - 8:17am
Replies by: Anonymous, Rocco, Nicklindner

Has anyone experienced calf pain and swelling while in ipilimumab? Also redness and pain in eyes?

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ajpeterson's picture
Replies 4
Last reply 3/29/2017 - 11:38pm
Replies by: ajpeterson, debwray, eric w, Anonymous

After being diagnosed with melanoma in my lymph node 3 weeks ago, I am going in to have my initial meeting with an oncologist/surgeon who specializes in melanoma.  My meeting is this Friday (10/31), and I'm assuming that we will talk about a lymph node dissection, and then treatment options following the surgery?  

Ive been reading different posts about various types of treatment, and wondered if you all have any sage advice for me?  Any questions (aside from the set questions that are on melanoma.org) that you think I should ask?  Any types of therapy I should avoid, or be careful of?  

Thanks in advance! 

Amy

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/30/2017 - 3:26pm
Replies by: MikeW, J.bun, debwray, Anonymous

Hi all-stage 3B here with unresectable cancer still in the parotid due to location (practically kissing my facial nerve).  So after visiting 3 cancer centers the docs are all in agreement that they can't surgically remove the bits of bad left behind, and they can't radiate it (for the same reason).  Keytruda seems to be the best action, but I'm having a hard time with the decision.  I'm super healthy, live a very active lifestyle, I don't know HOW to be sick. It took 19 years for the primary to revisit me and given the lack of enthusiasm with my survival rates changing because of trying Keytruda I'm wondering if this is the right time.  Is waiting ever a smart idea?

JulieT

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My mom is identified with Stage 1B Melanoma, her primary tumor is on her face - below the right eye and towards the side. The doctor performed a wide excision biopsy along with surgical removal of the mole. Tthe biopsy came back positive. Here are the details.

Clarks level : II

Pathological staging : PT1B

Miotic rate : 1 mm

Breslow width : 1 mm

They did not do a sentinel node biopsy the first time around and I hear it is not a possibility now.

The margins are not clear and showing some activity of atypical cells/melanocytes. They did not remove the margins the first time since the site is closer to the eyes. so they have scheduled another surgery in 2 weeks to go deeper /wider in there and get out the remaining stuff. 

Is there any lymph node assessment possible at this point since the wide excision has already been performed changing the anatomy?

Also Is it okay to wait until 3 weeks (since the first biopsy result) to do the second incision/surgical removal? The surgeon is going on vacation and he says it's fine to wait. Should we try pushing harder?

 

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Lddaughter's picture
Replies 3
Last reply 3/30/2017 - 5:53am

Just wanted to put out how my mom was doing now that we are on day 7 of Taf/Mek treatment. She is becoming increasingly annoying (in the best way possible!).

It was about day 4 that we really saw her responding well. She started backing off the pain meds and really the only side effect is achiness so far. She does get headaches but I think that is attributed to the pain med withdraw. 

Day 5 - We traveled and she had a lot of soreness in her back after 5 hours in the car. She was able to nap only once or twice and overall had a good day.

Day 6 (yesterday) - She got up and had a great morning. Back to 2 cups of coffee and no nausea in the mornings. A little achiness but really didn't nap much and had a hard time even trying to nap. Traveled back to KC so another 5 hours in the car. A little sore when she got home but ate and went to bed.

Day 7 (today) - She slept great once she got in her own bed. I woke her up to take her meds at 7:30 then she was up and ready to go. Energy level has increased drastically. The nesting/cleaning has finally kicked in for HER and there was no stopping her after her coffee. Made me shopping lists and is ready to get stuff accomplished today. Her inflammation seems to be going down in her liver area and has had NO pain meds today!

We got off track from clean eating the last week just trying to make sure she is eating on a schedule and getting protein to try and get her weight back up.It is night and day from how she was last Tuesday. We are so thankful that we are getting her back (snarky attitude and all) even if it is just for a little while. Our next apt is Thursday for a toxicity test? Hoping to get her blood tested again to compare numbers from 2 weeks ago. Thank you all for the thoughts and prayers. Staying optimistic that this will give us more time! Down to 4 weeks until her grandson is born and she told me this morning she has baby fever so bad! I pray every day she gets to be with me again when he arrives. Best wishes to you all!

Thanks,

-A

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iamanne's picture
Replies 1
Last reply 3/29/2017 - 10:02am
Replies by: Jamie1960

I had postied on this site after my original diagnosis in October  2015, and everyone was very helpful ! I was diagnosed 10/15 desmoplastic melanoma--incisonal removal plus centenal node biopsy (negative). all on the left arm.  Today--ten minutes ago- i just got the call from  my dermotologist  "Desmoplastic melanoma insitu "about two inches from the original site. --- I have an appointment for next monday -six days from now. This looked like nothing more than a freckle---I have many of them.  I see him every three to six months.  any thoughts?  My original surgery was done in a hospital  in New York City--NYU Langone. Should I be seeing that surgeon again, or go back to my dermatologist for removal?  I immediately called the surgeon to see if he does any office surgery, but he does not. I dont think this event calls for hospital admission, but want to be sure that I am doing the right thing staying with my dermatologist.  At this point, I am so happy that I did the sentinal node biopsy with the original surgery, it was optional because of the Stage 1, but now it give me hope and a calmness that it was negartive.  Any ideas? Thank you.  and God Bless!  Anne

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jennunicorn's picture
Replies 12
Last reply 3/28/2017 - 10:24pm

Last week I emailed my doc to let her know I have been having times where I would lose my balance and have been getting dizzy on and off. She ordered a brain MRI, I had that done on Friday and was anxious all weekend. Yesterday morning she let me know that my brain still looks good, nothing new to report upstairs.. thank goodness.

So, I am wondering, have others on Nivo (been on Nivo alone since end of January) had similar problems? 

Last appointment I had my B12 levels tested and I am low in B12... which is probably the cause of my anemia mystery. May need more blood tests when I go on Thursday. Wondering if B12 deficiency can cause balance problems and dizziness. I know it's not an inner ear problem, I am more in tune with my ears than most people due to ear issues my entire life, so I know when my ears are causing trouble. 

Just been overall feeling off.. kind of like in a fog most of the time the past couple weeks. Hoping this goes away soon... it's making work a bit more difficult than it needs to be. 

 

 

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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