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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Replies by: geriakt

Hello all... I haven't posted on the forum in a while pretty much because there wasn't much to say while I was on the clinical trial.

First a bit of history...

Original site right thumb, under nail, colorless melanoma, originally misdiagnosed 06/2014, positive diagnosis 05/2015. 06/2015 Distal amputation to remove the primary site, SNB to identify spread, SNB positive, complete disection performed 07/2015.

Began Clinical trial CA209-238 10/2015 CT scans, infusions, etc., etc.

Today... 7 months later, went from no side effects to all side effects for Nivo, trial suspended, put on steroids... next, 2cm nodule near the original SNB site (left elbow) identified plus a 10mm nodule in the left lung.

06/2015 2cm nodule removed, positive; lung biopsy tomorrow

Will keep you all posted on next steps... most probably, Moffitt, NYU and MSK for second opinions on what to do next.

Juan

Juan

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Happy_girl's picture
Replies 6
Last reply 6/27/2016 - 11:59am

I posted yesterday abt a spot near my kidney.  That was incorrect - it's a sub cm spot on my liver.  I am just terrified that it as spread.  I just hit my 2 year mark.  This appointment put 26 months- so I was becoming confident- now I'm back to fear.  I'm praying this is nothing next time I get scans.  Could that be???

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/27/2016 - 2:35am
Replies by: MoiraM, Anonymous, Jennab0525

I noticed in about a month ago or so. The last 2 weeks I've been itching in that spot quote a lot and it's starting to concern me. It's under 2mm I think.

Here's a picture

https://imagizer.imageshack.us/v2/320xq90/r/923/acOu4u.png

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Aaron's picture
Replies 4
Last reply 6/27/2016 - 2:29am
Replies by: MoiraM, geriakt, youngann, Aaron

Tomorrow I go in for my second nivo/ipi combo treatment. So far my side effects have been minimal. I have had two separate days about 8 days apart where I experienced pressure in my lower abdomen, I have had acne onsets where pimples have been appearing, I had two days of a very light rash on my forearms, and strangely I have experienced some sort of immunity to my allergies. 

Previously I was experiencing a feeling of the onset of sciatica but this has largely subsided to where I now feel like I need my lower back popped or sometimes it is unnoticeable altogether. 

I am anxious for my first scan to see if/what my results are. I realize I have some time before that but it is still in the back of my mind.  

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I am 47 years old; mother of 3; my youngest being almost 8 years old. Just looking for advice from anyone who is undergoing targeted therapy ( Zelboraf & Cotellic). I am Stage 4....in January my yearly scan showed 2 masses in my leg where the cancer originated in 2006. Between January and now, shortly after starting immunotherapy, which I had to stop after 2 infusions because of elevated liver studies, the cancer spread to my right kidney. A month after spreading to my kidney, it spread to my stomach. I finally was given the go ahead to start the targeted therapy....had to wait for liver studies to be normal again.....which seemed like it took an eternity! Now I'm scared to death that that I'm going to eventually have to stop this treatment if my liver studies become elevated again. Any suggestions on how to get your liver to cooperate with the meds? I'm trying to eat as healthy as possible but if anyone else is going through the same treatment, I would love to hear from you. Even if it's to compare side effects. Right now I'm going into my second week and nausea and some vomitting have been my main side effects; along with extreme fatigue. This morning, however I woke up with the raised, red rash that's super itchy under both armpits and on my kneecaps. Everything I've read so far is the oatmeal baths help the best. Anxious to hear from someone....I feel very alone in all of this...even though I'm constantly surrounded by family members who want to help. I just know I would feel so much better to connect with others who are going through what I'm going through. Hope to hear from someone soon! 

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Sara.Alexander's picture
Replies 4
Last reply 6/26/2016 - 7:52pm
Replies by: Everymoment, Anonymous, Bobman

In August of 2009 I had my annual full-body skin check. My doctor chose to biopsy 4 moles as a precaution but told me I had nothing to worry about. The results were not expected as 1 was melanoma, 1 was pre-cancer, and 2 were severe atypia. Based on those, she did another biopsy which came back as melanoma insitu. I've since had over 50 biopsies with everyone coming back atypical. I just had my 6 month skin check and I pointed out 2 moles that concerned me. The doctor was not concerned but did biopsy one of them as a precaution. Needless to say it was melanoma insitu. So I've now had 3 melanomas in 6 years and I just turned 37. I have also been diagnosed with dysplastic nevi syndrome. I go back for my 3 month skin check in 2 weeks and I'm scared. I feel like there's more I can or should be doing. I'm the only patient like me for my dermatologist. I love her and don't want to leaver her practice, but I wonder if I should see someone else in addition as none of my moles looked like melanoma and the doctor was surprised by the pathology results. I live about 50 miles from Baltimore and Washington DC. I plan to discuss this with my doctor, but would appreciate feedback and suggestions on doctors as well as how to proceed prior to seeing her.

Thank you in advance,
Sara

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Kare83's picture
Replies 5
Last reply 6/26/2016 - 6:20pm
Replies by: Kare83, desertsun, Anonymous, jennunicorn

I have been on 3 monthly skin checks since December when I had Stage 1 Melanoma removed from my shoulder blade. 

I am the third in my immediate family to get a diagnosis.

I have had a few moles removed now, all benign except for the Melanoma. My doctor knows I honestly don't care about the scars.. I know taking off moles that may be benign won't stop me from getting it again but I sure feel better about removing ones I am worried about just for peace of mind.

However my Doctor won't take any off. I had been to him a few times and he was happy with how everything looked. My husband noticed a mole on my shoulder blade started to change colour, half was dark brown and half was light. I went back to the Dr but he told me to just keep an eye on it. Three months later and half the mole was black and the other half was still light. I went back and although he examined it and said he could see some change, he doubted it was anything sinister and said he didn't want to remove it. I explained that I was uneasy about it, specially because of the quick change and he agreed then, that because it was on my back and hard for me to monitor personally, he would take it off the following week. Then, once removed, he called the next day and said it was Melanoma and I needed wide margins removed.

It's not his fault, I realise. He honestly didn't think it was anything sinister. Though I have two more changing colour that have been worrying me for the last few months and have seen two people about them (my original Dr and another Dr for a second opinion). Both have said the two moles, along with all the others are fine. I practically begged for them to biopsy them both - I really need the peace of mind here.. But both refused.

So the thing is, yes I know the chance of having another primary is higher than the norm, yet it's not all common... Though I don't know what to do now? I honestly don't care about paying for the procedures or having scars - I just need peace of mind. I figure it's better to biopsy or remove them than regret it later, no matter what the chances are.

I'm just not sure who I can see that will do a biopsy now though. It seems most regular doctors like to steer clear of this and let the skin cancer doctors do things?

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/26/2016 - 3:16pm
Replies by: Janner

I was wondering what the criteria is for this syndrome? I  have a good amount of moles, probably 150 of them but most of them are tiny. Some of them look irregular but that's just the borders.  I have been seen by several dermatologists and none of them ever mentioned the syndrome.  I did have one low grade atypical mole removed but that was it. 

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Brent Morris's picture
Replies 3
Last reply 6/26/2016 - 1:50pm
Replies by: Anonymous, Brent Morris, Tim--MRF

Dear Tim, 

 I appreciate your efforts at ASCO. I do wish you would clarify your reporting in regard to interferon. I cannot, after searching assiduously, find any abstracts, posters or sessions at ASCO 2016 in which data for interferon as an adjuvant in Stage lll melanoma, as the sole agent or as an arm of a trial, is reported. As such, I have posted the only data available (from 2012) in which a "marginally significant" 3% effect is found on overall survival in a large cohort, The study also notes that 37% of patients had to stop due to toxicity.

What specific data are you quoting?  I think it is important because failure to put interferon in its marginal place (Dr. Kirkwood not withstanding) may cost lives and lead to unneeded suffering with minimal to nonexistant benefit. Thanks

BMorris

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cbrpower's picture
Replies 25
Last reply 6/26/2016 - 6:17am

Hello to everyone here. I have been reading a lot on this board, and I'm amazed at the mass of information.

I am a healthy 30 year old, very athletic. I had a mole on my big toe, had it removed 3.2 mm non ulcerated. I also had a sentinel lymph node biopsy. Results came back with 2 negative and one positive, the positive having "rare isolated tumor cells" according to the pathology report.

My oncologist wants to order a CT scan to see more, but my options are removal of all nodes in the left groin, watch and wait, or a trail that has a less invasive camera that will have them do more node removals.

Based on all of this, could anyone kindly chime in with what they would do or what they think I should do? Dr. said that I have a 9-15% chance that it has spread to other nodes.

I'm trying to cope with all of this, as going from 100 MPH to 0 is quite painful mentally.

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Bubbles's picture
Replies 2
Last reply 6/25/2016 - 10:11am
Replies by: Bubbles, beans920

I figure you're heading toward a week of breath holding and zappage! Just wanted you to know I've been thinking about you! Hang tough! C

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/25/2016 - 12:27am
Replies by: desertsun, Casitas1

Just thought I'd mention this since I hadn't read about it.  Concurrently with tapering off of prednisone about 6 weeks ago, I developed a "head cold".  MRI (done for tracking tumors, not the "cold") showed lots of inflammation in the sinus area.  Tried everything--anti-biotics, allergy meds, etc.  Nothing helped.  No sense of smell and limited sense of taste (no jokes).  "Cold" moved into my eyes to the point where my vision was affected by constant mucus.  After 6 weeks of feeling like crap (not complaining; minor nuisance in the scheme of things), finally bit the bullet and went back on prednisone (short course and low dose).  What a difference.  I hate being on prednisone and will have to deal with its side effects (though the extra energy is welcome)--but it's nice to get relief.

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Anonymous's picture
Replies 4
Last reply 6/24/2016 - 6:40pm
Replies by: lisa joy, Anonymous, Janner

Hi everyone, 

I was diagnosed with Stage 1A Melanoma - .75mm, non-ulcerated, very low mitotic rate. I located it on my stomach (left flank). I do once per year to my dermatologist for skin/mole check. I grew up on the beaches of Destin, Florida. Growing up we didn't know about sunblock or at least we didn't care about it. We never knew about skin cancer. I would also visit tanning beds here and there before school proms or events. Ugh...so stupid!

I had a WLE and one lymph node removed as well. I always thought with a stage one diagnosis that I wouldn't have to have a lymph node removed. My doctor (melanoma specialist) is VERY proactive and did not want to risk "guessing" if it spread or not. All Margins were widely clear and lymph node was clear - no evidence of metastatic melanoma. 

I also had a brain MRI and PET scan. Again, so scary to go through all these tests and didn't realize with a Stage One diagnosis that I needed them. But, I'm thankful now that I had them. All scans are clean and clear. Thank God! 

This entire process took 10 days. All of it went by so fast and I'm still trying to process it all. I have two young girls and  so scared. I still am scared because of all the scary stories I've read on the internet. I should probably stop searching on the internet. I still feel like a cat with claws stuck on the ceiling and I'm afraid to come down. Now I look at every spot on my body afraid that it's Melanoma. My doctor tells me that we are in prevention mode now and I will go see him every three months to check my skin. He tells me to be thankful that we caught it at an early stage. I am thankful but I'm also afraid. I'm trying to find my new normal without being afraid. 

My goal is to become an educator on Melanoma and teach our youth about how to protect their skin. I will also preach to my adult friends about getting their skin checked. Another goal of mine is to change the tanning bed business in our country. I know it's a big hill to climb but I'm up for the challenge. 

Thank you for reading my post. Knowing that there are so many Melanoma friends out there helps. 

 

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JoshF's picture
Replies 7
Last reply 6/24/2016 - 12:05pm

Well things continue to creep along. I'm almost a month out post surgery. I've got a long week coming up at MD Anderson. I'm entering the Phase 2 trial of Adoptive Cell Theraphy combined with low dose IL-2 and ipi.

I found out today that my blood tested positive for HLA-A201. I had already knew I was HLA-A2 positive but needed a higher resolution blood test for the 01. I also tested positive for the Mart-1. So I'm scheduled to have CT Scan, do cardio work up, see doc and leukpheresis done on Thursday. I'm also going to see surgeon to have tumore harvested in hopes they can create TIL's in the event that I need it in future. I certainly hope not but after dealing with this for 5 years, you just never know. It's the damn roller coaster Maria talked about in earlier post. Not to mention that any ache or pain is related to the crap that lurks in my body. I'm praying this is another complete response for me that is DURABLE!!!! The key word that eludes so many of us.

Thank you to everyone who has chimed in with support, information and just genuinely caring for each other. It's difficult to relay to friends and family unless they've been in our shoes. You always hear....stay positive, stay strong etc... well that's another battle we all fight. Who doesn't fight to be positive or stay strong and fight through this...we all do but I'd be lying if I told you the darkness doesn't creep in. Everyone means well and I hold nothing against them but coming here I know everyone deals with much of the same so like I usually do, I give thanks for all of you. Be well.

Josh

Let's work for better treatments....for a cure!!!!

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scpage's picture
Replies 5
Last reply 6/24/2016 - 11:42am

WLE and SLNB completed yesterday....results in five to seven days.  Oncologist indicated that should the results be positive, I will require more surgery to remove all the lymph nodes from the area where the SLNB was performed(right arm pit).  But.....is that my only option???  Am I wrong in thinking that before we remove those lymph nodes, that maybe we should be looking for cancer elsewhere in my body, and develop a plan to treat that?

I sincerely appreciate any advice you can offer!

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