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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tmelanio's picture
Replies 2
Last reply 5/26/2015 - 9:46am
Replies by: arthurjedi007, Anonymous

In great health at 67 and retired in the rural community of Nalcrest, Polk County, Florida, I chose the cheapest advantage plan I could find, saving over $300 a month over my previous plan which I suspended.  I can always go back or choose a better palan during open season.

Because my plan does not authorize routine skin check-ups, my PCP picked a random blemish to be checked out by a participating dermatologist.  On February 11, 2015, his nurse found a suspicious spot elsewhere on my right forearm.  I got a call right away that it was melanoma.  Oblivious, I thought nothing of it.

On March 2, I was shocked at how much the dermatologist cut away for such a small speck, but soon afterward I got a call that the margins were too small and that I had stage 2 melanoma.

The earliest available appointment was April 21 for one of only two oncology surgeons at the Lakeland Regional Cancer Center which is approved by the Commission on Cancer.  He said he would perform a wide excision and remove 2 lymph nodes.  The earliest he could do it was May 7.

My plan requires all testing to be routed through my PCP, a round-about way apparently foreign to everybody.  I personally had to play phone tag between the Cancer Center, my PCP, and health plan to clear up repeated miscommunications and misunderstandings before my pre-op testing was approved. Labcorp and ATR waiting rooms were full and obviously low income. 

Right up to the afternoon before my scheduled May 7 surgery, I was assured that I would get an automated call informing me of what time to show up.  Just after 5 PM I received the automated call informing me to check in 2 hours before my 2:05 PM surgery.

May 7, 10:30 AM, I received a call asking why I wasn't there for a 10:00 AM procedure for which a medical team was waiting.  When I told her about the automated call she apologized - a nurse was supposed to have called me.

My girlfriend, Julie, was told that she could accompany me every step of the way.  However, she was left in a room to which I was to return.  She was forgotten for over an hour and a half until a nurse came by and asked what she was doing in there.  She was told the surgery would last 2 hours so she went to the hospital cafeteria to eat.  The surgery was over in 40 minutes and she missed speaking personally with the surgeon.

Immediately before the surgery, a kid came by with some papers to sign.  I was hooked up on the gurney wearing nothing but the gown and of course I didn't have my glasses. On retrospect I believe it was giving him permission to insert the breathing tube for the anaesthesia.  Afterward I had a miserably raw throat and was coughing up gobs of green phlgm for 3 weeks. It hurt to swallow. I read online that this is preventable and is dependent upon the skill and technique of the anaesthetist.

The follow-up was on May 18 with a nurse practitioner in lieu of the vacationing surgeon.  She balked twice before answering my question.  Julie burst into tears when she said one of my lymph nodes tested positive.  I asked what next and she replied, "Chemo". I asked how much cancer was in the positive lymph node and after looking at her clipboard, replied, "I don't know". She reiterated the surgeon's assertion that he would take out all my lymph nodes should one test positive.  She prescribed a PET scan and brain MRI.  She scheduled my next appointment with her since the surgeon was fully booked for the month.  June 2 was chosen because he would be in a nearby wing and she might be able to get him to drop by.

Again I played phone tag trying to get approval for the PET scan.  May 21, on my way to the mobile unit, I received a call informing me that it would have to be rescheduled because it had not been approved yet. From my car I made a couple of calls clearing some blatant miscommunications before she called back with an Okay.

Yahoo! The PET scan is negative.  I would have not known until long after Memorial Day had I not called and insisted. However, I learned some perhaps dated info that PET scans have trouble detecting cancer that is less than 8 cm, which seems awfully big to me. How accurate are they?

Cancer.net states that the survival rate is the same for patients who elect not to have lymph nodes removed, and that because of this, many patients choose to leave them alone to avoid probable complications for life. Immunotherapy does not increase lifespan, and even with chemo and lymph node removal, recurrence is 27%.  Are there any stats for watch and wait?

Brain MRI scans are not available in Lakeland until the middle of June, so I am having one in Plant City May 28.  If that is negative also, am I considered NED?

I have gone cold turkey and removed sugar and processed foods from my diet.  Eating as much as I want, I now consume foods which strengthen the immune system and I am losing weight.

I feel like my June 2 appointment with the nurse is doc-in- the-box assembly line care.  I know I need a melanoma specialist. I am long registered to receive care from any Veteran's Hospital in the country. Open season to change plans is at year's end.

Any insight or advice would be sweet. Thank you.

 

 

 

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AnitaLoree's picture
Replies 5
Last reply 5/26/2015 - 4:05am
Replies by: Squash, Bubbles

http://melanomanewstoday.com/2015/05/15/provectus-synthesis-patent-grant...

This link describes the intralesional use of PV-10 (active agent: rose bengal) for melanoma treatment with complete response for a % of the patients. A.L.

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CourtneyT's picture
Replies 15
Last reply 5/26/2015 - 2:03am

Hi there,

I am female, 37 years old, single with no children. I mention this because I don't really have a network of people who understand this disease or a support group close to me. 

On March 9, 2015, after a lymph node was removed in my left groin area (due to pain and swelling), I was told the dissection showed an aggressive form of Melanoma in two lymph nodes. I took a leave of absence from work in NC and relocated to Baltimore. All my specialists and providers are at Hopkins now. I have had all the lymph nodes removed in my groin, as well as all the usual tests: PET, CT, EUS, EGD and multiple biopsies. 

The next step is really where all my questions stem from and I cannot seem to find the answers. I begin Interferon in a week and keep forgetting (really get tongue tied) to ask my physicians, despite even writing down questions. My interferon protocol is for 12 months, 1x a week injections I can do at home; however I have been reading that the first month is done at the hospital (inpatient?, IV?)?  Can anyone walk me through the process step-by-step or at least the first month. It would be especially great if someone has done it at Hopkins. 

I am categorized as Stage IIIC 

Lastly, perhaps I should start a different thread for this but can someone help me with how they dealt with the side effects of the treatment?  I'm already in a lot of pain in my stomach, stressed out and have horrible headaches.

On a side note, I have switched my diet to all organic primarily vegetables and fruits (75/25) and am very careful about what I eat.  Prior to this, I was very athletic and healthy, running marathons and could still flip around being that I was a gymnast and still coached on the side.

Thank you so much in advance!  God bless all of you and my prayers will be with everyone and be hoping for the best in their journey.

Courtney

 

 

 

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Husband had 4 year scan since his recurrence in 2011 and is NED.  He was diagnosed as stage 3(b) or 3(c) depending on the institution.  Although it is always in the back of our mind, it doesn't define us.  We live more appreciatively, laugh louder, empathize deeper, and play harder (we still work too).  Feeling optimistic with the recent medical advances in the melanoma field and wishing you all the best in your journey.

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I don't recall when I subscribed to this weekly email digest, but this week's installment had a couple of interesting articles.

Disclaimer (or as everybody loves to use at work these days: tl;dr): I didn't search Celeste's blog first, so she may already have written about these.

http://melanomanewstoday.com/2015/05/22/researchers-discover-melanoma-in...

Talks about the discovery of a pathway (WNT/beta-catenin) that inhibits T cells from entering a tumor. The article hypothesizes that patients lacking TIL cells do not benefit from immunotherapy as much as those with them. This opens the door for investigating how to block the WNT/beta-catenin pathway to let the TIL cells in.

The second, http://melanomanewstoday.com/2015/02/26/melanomas-addiction-to-glutamine..., talks about melanoma's need for glutamine to survive. They found that melanoma cells die without it.

- Paul.

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Replies by: dentholla, Speedster

Back on April 14, 2015, I was patient #1 for the  Yervoy (Ipilimumab) vs. OPDIVO (Nivolumab) Phase III clinical trial for Stage III metastatic melanoma patients - resected tumors, No Evidence of Disease. 

Who else is in and what are you experiencing?  I"m super pleased with the entire team there having had a less that stellar experince at MD Anderson, which is an amazing resource none the less. .

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_Paul_'s picture
Replies 5
Last reply 5/25/2015 - 4:48pm

I remember quite distinctly sitting in my new oncologist's office last year on Wednesday, September 10. I had had a second recurrence, and I was sitting in his office to discuss the results from a PET of two days earlier. My prior melanoma oncologist had accepted a position at Stanford, and I think this was the initial meeting with new one.

I had had quite a few scans up to this point, but this time it was different. All the prior ones had shown NED. But this time I had mets in lungs, liver and gall bladder. I remember asking him what my prognosis was, and he said the conventional outlook was less than a year. So in my mind I assigned a drop-dead date a year out (apologies for the bad pun). I would be lucky if I made it all the way to midnight on September 9, 2015.

The big problem of course is the uncertainty. What did less than a year mean? A couple of months? Six?

In the past, I would just take time off work to meet with my oncologist when there were scan results to listen to, then go back and finish off the day at work. That had been my plan on this day too. But after hearing the results, I called my boss, and told him I would not be coming back. Maybe ever.

My next thought was I better enjoy my life while I still feel good so I booked a trip to Hawaii and in the meantime took off on a road trip throughout the south west.

After a few weeks I still felt pretty good. I had some side effects from treatment (ipi) but nothing from the cancer. So then I sheepishly returned to work, thinking I had overreacted. But everybody there welcomed me back and the embarrassment quickly faded.

I recently started going to a cancer support group because I wanted to see how other people deal with this strange state of existence. That’s when I heard someone jokingly use the term “expiration date”. That person had outlived hers and I am beginning to think I will too.

What I found was that over a period of just a few months, my fear of the unknown (unknown being how much time is left) has gradually been replaced with this strange outlook. It still seems quite likely that any chance of living to a ripe old age has been greatly reduced, but if I make it to my expiration day, that seems like a reason to celebrate!

I don’t think I am the only one that feels this way. I suspect there are a lot of us that go through a similar process. The end result is that for now anyway, my day to day life from the outside looks unchanged. But I have been left with this heightened awareness that I better appreciate each day of what is ultimately an uncertain future for anyone alive.

I hope someone can relate to this.

Paul

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Pennie Jo's picture
Replies 7
Last reply 5/25/2015 - 4:08pm

Anyone experienced fever while taking Mekinist/Tafinlar? My sisters fever spiked to 102.6 and wouldn't come down - called doc said it is a side effect of the chemo and a possible sign she won't be able to tolerate this chemo. Had me give her decadron (steroid) for the fever. So far it is bringing her temp down. Doc told us to not give the evening chemo dose - we see her oncologist on Friday. Just wondered if anyone else has experienced this - just so afraid the fever is from something more!!?? 

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las630's picture
Replies 2
Last reply 5/25/2015 - 3:27pm
Replies by: Bubbles, Toby0987

Good morning,

I had a mole removed from my leg about a week and 1/2 ago.  The dermatologist called me last week and said that it came back as malignant melanoma and that I needed to see a surgical oncologist.  I saw the surgical oncologist on Thursday and they said I need to have a wide excision and a SLN biopsy.  However, my surgery date is not until June 19th.  The waiting is kind of making me crazy!  :(

 

My path reports from the shave biopsy showed malignant melanoma, 1.2mm breslow thickness, positive ulceration, 2-3 mitoses per mm2.  Can anyone tell me the statistics of someone who ended up having lymph node involvement with this type of path report??

 

Thank you,

Lisa

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tcadwallader's picture
Replies 3
Last reply 5/25/2015 - 12:54pm
Replies by: Anonymous, tcadwallader, _Paul_

I am new to this community but I am frantically searching for answers, reassurance, etc.  My 9 year old son has multiple moles on his back and neck.  They have all been checked by our pediatrican within the last year and have "looked good".  Within the last 9 months I have noticed a pink, raised mole that has rigid boarders and seems to be growing quickly on his back.  I took him to the dermatologist and they referred to it as an "ugly duckling" and recommended doing a shave biopsy right away.  I am worried sick and wondered if anyone else has had a similar experience?!?!?

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Banders's picture
Replies 1
Last reply 5/24/2015 - 5:13pm
Replies by: Anonymous

Hello:

 

I'm stage 4 metastatic melanoma and yesterday (Friday morning, May 22) I had an oupatient excision in my upper right eyelid.

 

Feeling pretty good a day later (Saturday morning the 23rd) with no pain, but I can't open the eye.  The sheet I was given from the hospital didn't mention this topic and a pretty good google search also reveals no inforation about this topic specifically related to melanoma excisions.  

 

So to the point:  Anyone had an eyelid excision?  After how long were you able to open the eye?  I don't know if I should be trying to open it or the opposite.  

 

Thanks ahead of time for any info.

 

Brett Anderson 

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Keepingyourchinup's picture
Replies 13
Last reply 5/24/2015 - 10:31am

I appreciate all of the input and support that I have found on this site thus far. Yes, I am one of the newly diagnosed patients with melanoma. I had a mole on my back that was considered "no big deal" and then turned out to be melanoma, initially thought to be stage 11b. I have had the wide excision completed with SNL and removal of both axillary nodes in April. My left arm biopsy turned out to be positive so I just had a complete removal of my lymph nodes under my left armpit (axilla) on 05/08. The node contained 0.15 mm of cancer cells and the rest of the nodes were negative. Now I am considered stage 3 with options that are confusing... The choices are : do nothing just observe, interferon and be sick for a year, pegylated interferon and be sick for 5 years or possibly receive ipilumumbab (spelling may be wrong...). 

I know that this has to be my decision; however, I was wondering if anyone knew where I could find any statistics on these drugs. I know doing nothing is not an option for me and the 5 year long course really isn't appealing either but I am just so confused at this point in time. If anyone has any help, it would be greatly appreciated. 

 

Thank you! 

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Anonymous's picture
Replies 3
Last reply 5/24/2015 - 6:04am
Replies by: Anonymous, Linny, arthurjedi007

I had a SNB a year ago which came back positive for melanoma in one lymph gland and I elected to monitor by ultrasound rather than do the CLND.

I just had my three monthly ultrasound check up and the scar tissue where one of the lymph nodes was taken out a year ago now looks bigger and has some vascularity according to the doctor.

The doctor said it didnt look like the melanoma that was taken out in the SNB and was unsure what it was and has referred me for a Pet scan to make sure.

The doctor said all the other lymph nodes were clear on the ultrasound.

Has anyone else had this situation?

Can you just have melanoma in the scar tissue and if so what does this mean as far as treatment options go?

I so dont want to have a CLND as I live alone and dont have anyone to look after me.

 

 

 

 

 

 

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5dives's picture
Replies 1
Last reply 5/24/2015 - 12:04am
Replies by: _Paul_

Hello all, 

I was diagnosed stage 3B in June of 2014 and so far have been NED ever since. At my last appt with the derm, she mentioned a mole she wanted to keep an eye on. After that visit, I found an app I've been using to keep track of some moles. It asks you to take a picture of your mole with a reference item (dime or penny) to help measure the mole. I know some of you have been looking for apps to keep track of moles, so I thought I would recommend it here. It's called Mole Mapper and its available for IOS and Android. 

So...I have two moles that appear to be changing. I'm seeing the derm on Wednesday to have them removed, but as many of you have experienced, my anxiety and imagination are out of control. I know what I'll have to go through if they are new primaries, and I'm not exactly eager to relive that experience. If anyone wants to try to talk me off a ledge, I'm definitely open to that. :-) 

My question: Have any of you had an evolving / growing mole that turned out to be nothing?

I'm including the photos from the app just as evidence of how the app works. 

https://www.dropbox.com/s/758fkvmfkuux1qt/filename?dl=0

https://www.dropbox.com/s/wfv2ecx8k08yp4m/filename%20%281%29?dl=0

 

Best, 

Elaine

 

http://melanomadame.blogspot.com/

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Brief recap - I had a full, left lymph node dissection in June after reoccurence noted in May, 2011. Primary site was lower, left back in 2006. Initial PET/CT showed highlighted area to muscle in upper left thigh at same time as node detection. Removal of nodes showed 4 of 11 to be positive. Due to area in upper left thigh being positive, I was told I was Stage IV, resected. Within one week of surgery site was infected and I have since been medically packing the area. During this time I have gone for additional opinions.

I have traveled to Johns Hopkins and Sloan Kettering. My staging was noted to be Stage IIIb and Stage IIIc respectively. Johns Hopkins recommends Interferon since I would not be eligible for any trials at this time with no known, measurable disease. I am showing positive for BRAF. Sloan Kettering does not recommend Interferon nor do they use Interferon for any means of treatment at their Institution. Sloan Kettering feels there is not an added benefit with the use of Interferon, statistically, against reoccurrence coupled with the extreme side effects when taking this drug for the year. They would rather me not take Interferon and scan me every 3 months for the first year stating I have an 85% chance of relapse in the first year.

I would love to hear from those that elected to take Interferon and what assisted you in your decision process as well as  hear from those that didn't elect to take Interferon and why not.

Your feedback is much appreciated - I am fairly new to the board, since July, and truly feel the added benefit of being part of such a compassionate group of people, thank you.

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