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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murnaloo's picture
Replies 5
Last reply 1/6/2018 - 6:02am
Replies by: murnaloo, MelanomaMike, Anonymous

Hi all,

Just looking for any similar experiences (and, to be honest, some reassurance).

Yesterday I went for a run, then came home and took a shower. While drying my hair I noticed a mole on my left arm, just above my elbow, was bleeding. I was diagnosed with Stage Ib in April 2016 (a very thin melanoma) and had a WLE at that time.

I live in London, where the health system moves very slowly, but I did get an appointment with my GP this morning. He admitted he is no expert in melanoma and because it had been bleeding it was inflamed and hard to get a good look at.

I also managed to get an appointment with a private dermatologist this afternoon, who said essentially the same thing. He said he'd remove it for me, but can't until after the first of the year.

I have an appointmet with another dermatologist (where I had my quarterly follow-ups for a year) on 3 January.

All of these doctors have said waiting until 3 January is not a problem and with Christmas and New Year's coming up, I don't really have much choice.

I'm particularly freaking out because since February I have told the dermatologists at my follow-ups that this mole didn't look right to me. Four different dermatologists have told me it's fine over the past six months. I was also just at the GP last week, seeing the GP who does specialise in dermatology, and he said the mole was fine (and it was not bleeding then). It is on the back of my arm, so I can't get a good look at it, I admit.

I made the mistake of googling "bleeding mole" and am now having panic attacks. The dermatologist today said bleeding moles are more common than you'd think and don't have to mean melanoma. Of course, given my history, he said I should have the mole removed regardless. But, again, this won't happen until early January. I'm worried I will go crazy with anxiety before then. I am in the final nine months of my PhD and I have a lot of work to do in the upcoming weeks, but I can't focus when I'm so anxious and scared. I hate feeling like this.

I don't want this to ruin my Christmas (or my husband's Christmas, as I've essentially cried since I spotted the mole bleeding yesterday).

Does anyone have any advice or thoughts they'd be willing to share on how to cope and about what plan of action I should have?

Thank you and happy holidays to all!

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Replies by: wendywjj, Cindyco

My mum was dignosed as primary mucosal melanoma around cardia of stomach. The primary tumer is is a short pedicle polyps 5.7*5cm, basal part of tumor is around 2cm, it came from mucous layer. She had a ESD surgery first because thegastroscope biopsy result showed benign. But after the dignose with phthology, she received another surgery with a wider dissection (proximal gastrectomy).The pathology after surgery showed another small 1*1*0.5cm tumor in the same cardia area and 1 metastatic lymph node metastasis located in the right of cardia (out of 21  dissected lymph node) with negative up and down incisal edge. The surgeon said that my mum is a T2N1M0. Immunohistochemical result:Negative in BRAF, CKIT & NARS, PD-L1 22C3. The hospital also held a MDT to discuss this case. However, the next treatment suggestion is not clear, they are saying that this is a rare case and there is no clear evidence showing any effective treatment plan for this kind of mucosal melanoma.My mum is under observation now without any adjuvant treatment.Some doctors suggest to use interferon alfa or could even try PD1 (though it is not approved by CFDA yet now in China). I had checked NCCN guidelines, clinical trial results and articles... ...I know observation is a choice, but is struggling if we should use some medcine to "control" this a bit.

And also the smaller tumor(1*1*0.5), is it a satellite or in-transit or another primary? My mum should belong to stage 3, right?

How can I predict how invasiveness this tumer is? Would Ki-67 help to predict? Would a tumer genetic testing(showing TMB, MSI) help to predict?

How should I choose the treatment ? What should I pay attention to if my mum just wait and watch?

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Dave63's picture
Replies 4
Last reply 1/6/2018 - 1:06am
Replies by: Anonymous, Dave63

Hi, I had melanoma removed in August, since they have found a lesion on femoral neck and Bosniak type IIF renal cyst. My doctor said he will wait a year for follow up. Is this ok based on having had melanoma? Or should I push for further investigation? I’m worried that if I wait a year that these lesions will have grown or progressed. Just looking for a little advice.
Thank you.

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Hello Everyone,

My Doctor suggested this DecisionDx test to see how likely my melanoma is to return.  Has anybody had this test done?  What is the cost? Does Insurance cover it?  

Thanks for any comments.

Terry

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Aloha14's picture
Replies 4
Last reply 1/5/2018 - 5:09pm

Hi,

I haven't been on here for about 6 months or so. However, I had melanoma on my left leg which spread to one lymph node, and terrible problems with seromas after surgery. On Dec 9th was my one year mark and the PET/ct scan came back clear. Yeah, now for follow ups.

Unfortunately, I have just been diagnosed with invasive breast cancer today and so will be dealing with that for some time. 

I haven't read recent posts but I wish everyone well. 

 

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Lori Ann's picture
Replies 10
Last reply 1/5/2018 - 3:11pm
Replies by: Anonymous, Lori Ann, Jahendry12, CHD, Bubbles, adrianc

Hi All.  I was diagnosed in January, 2015 with mucosal melanoma in the nasal passage.  Since then, I have done 6 weeks of radiation therapy, then had 7 surgeries to remove tumors; I've done Yervoy, then Keytruda.  I had one tumor shrink on Keytruda, then no response.  I just finished 3 rounds of chemo (carboplatin and paclitaxel).  The tumors have grown and spread. 

I treat at Rush Univ. Medical Center in Chicago.  We went to Mayo Clinic this summer for a second opinion and they confirmed that everything we have done so far is pretty much standard procedure.  Is Rush a good option?  We live in Northwest Indiana.

We are trying to decide whether to do a Phase 1 study of SEA-CD40 with/without Pembrolizumab (keytruda) or try different chemo drugs (abraxane and Avastin).

Does anyone have any insight?  I am OVERWHELMED.  Thank you.

LORI

 


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kabc's picture
Replies 11
Last reply 1/5/2018 - 12:11pm

I was turned down for Ipi/Nivo trial here in Ontario because the margins from my head/neck WLE were positve. Onc wants me to start radiation and then Tafinlar/Mekinist.

I am looking for any advice and experience that anyone with head/neck has had with this combination.

My head has not even healed yet and all this is happening fast.

Thanks to anyone who may answer.  I am feeling a quite a loss not getting into trial.

 

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bchestney's picture
Replies 3
Last reply 1/5/2018 - 12:01pm

Just finished 4th course (8th infusion) and side effects are significantly reducing my quality of life.  They include severe dry mouth, muscle pain, muscle weakness, joint pain, general malaise, chills.  Now my most recent labs show elevated liver enzymes, all of which I will discuss with my onc next week.  Since I am NED, and the Nivo is adjuvant therapy, it is tempting to discontinue the infusions.  If I were 100% certain that these side effects would disappear after the 16 more infusions, I could suffer through it.

But what worries me is that they are hoping the one year of infusions will "teach" my immune system to attack cancer cells.  Might it also teach it to continue to attack the healthy cells (causing my side effects)?

Please share your experience if you had side effects during Nivo infusions, and the infusions have now been discontinued (either after the full course of treatment, or after early termination due to toxicity).  Did all side effects disappear, or did some persist?  If so, for how long so far?

thanks to all, and hoping 2018 is a great year for all of you!

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/5/2018 - 11:30am
Replies by: Janner, Jvlie

Hi . which is the superficial spreading melanoma ?

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BillB's picture
Replies 6
Last reply 1/5/2018 - 6:38am
Replies by: Newmanbell, BillB, SABKLYN

Happy New Year to everyone, Completed the eighth Keytruda infusion a little while ago. Driving back to Syracuse tomorrow. NYC is getting a little taste of Upstate NY snowfall today. So far the side effects since infusion #6 have been non existent except for some mild fatigue. Will be getting CT scans in three weeks.

good luck to everyone, Bill

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maryliz56's picture
Replies 2
Last reply 1/4/2018 - 7:44pm
Replies by: maryliz56, jennunicorn

Hi! I am 61 years old and I see a dermatologist regularly bc I have fair skin and various skin issues. I'm am used to her freezing and biopsying. Everything has been fine until this visit. I have Basel cell on my nose and melanoma on my upper arm. I have a surgeon appointment next week about the melanoma.  My doc says it's thin, .22 and she says that's good.  Why kind of questions should I ask the surgeon? And other advice? Is .22 "good?"  

I'm an outdoor lover but I always wear hat and sunscreen.  I usually wear a 3/4 length sleeve shirt, so my upper arm rarely sees the sun.  My husband and I are planning another hiking vacation trip this summer.  But mostly I'm worried about the cancer spreading.  

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PTgal's picture
Replies 2
Last reply 1/4/2018 - 3:51pm
Replies by: JRM, Janner

Here I am with more questions. My doctor (family practice/GP) performed the excisional biospy of the mole which was later confirmed as T1b malignant melanoma. He has referred me to a general surgeon for the WLE. I meet with the general surgeon on Monday and will be asking about SNB as well.

As far as follow-up afterwards, should I just see a regular dermatologist or some other type of specialist? My GP said I can have skin checks at his office, but I would feel better about going to a dermatologist at the very least. Anyone know the best place to go in Little Rock,AR?

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JRM's picture
Replies 2
Last reply 1/3/2018 - 11:07pm
Replies by: JRM, Janner

Hello everyone, I am new to the MRF Forum, but thought it beneficial to be more proactive regarding my past melanoma, even though I have been clear for five years. I was first diagnosed with melanoma stage 1 in 2013 and had a wide excision of the lesion on my upper left arm. My margina came back clear the first time around. Over the last several years and with many other moles removed, I have been seeing my original diagnosing dermatiologist twice a year for mole checks.

Today, I had two suspcious moles removed near the original melanoma scar. My dermatologist thought they were atypical nevi and did not seem too worried,  but they both had black spots within the moles. My question to everyone: how common is it to have a recurrence of early stage melanoma near an original site? If my biopsies come back positive this time around, I would imagine I would have a wide excision surgey again. Would a PET scan be advisable now?  Has anyone had experience with this? Many thanks and best wishes for good health and happiness in 2018! 

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/3/2018 - 9:38pm
Replies by: Frillie, Anonymous, Cindyco, adrianc

Greetings-

My mother was diagnosed with rectal mucosal melanoma in March of this year. We are looking for a survivor for her to connect with by phone or email to talk about their experience but this rare and aggressive cancer has made it difficult to find any current local patients. If anyone has been treated for MM, and would be willing to speak with her, we would be so very grateful.

Thank you.

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Happy_girl's picture
Replies 6
Last reply 1/3/2018 - 6:35pm

Hi! It’s been a while since I’ve posted on here.  I also just posted on MIF.  I know pregnancy has been discussed quite a bit- I’ve brought it up before on here too, but I just needed a space to share. I was diagnosed stage 3a in April 2014 when my daughter was 6 weeks old. My husband and i were hoping to grow our family. I’ve seen melanoma specialists— currently Dr Kendra at the James (Ohio State), and Dr coit initially after diagnosis (he performed my clnd- although he stated he would have been comfortable NOT doing it as well when looking at my tumor stats). Dr. Kendra suggested waiting 1-2 years before becoming pregnant, and Dr Coit suggested waiting 3-4 years.

So the question- it is now over 3 1/2 years and I am now 6 weeks pregnant. I am so excited, and then. I get moments of sheer fear and panic.... that we made the wrong choice, and that this beast is going to come back while pregnant. I’ve googled ( STUPID YES), but I seem to never find positive stories of pregnancy after stage 3a.

Any insite from anyone would be appreciated.

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