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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Prd10's picture
Replies 5
Last reply 4/4/2017 - 9:20pm
Replies by: Prd10, Bubbles, Ed Williams

My full history is in my profile.  I'm currently on pembro with a liver tumor and a subcutaneous tumor.  The subcutaneous tumor doesn't appear to be responding to pembro, although I'm very open to it being pseudo progression I want to be prepared to switch gears if necessary.  I'll have a scan next week to confirm.  At this point I've only done pembro.  

I've been offered two trials if I qualify based on blood and tumor testing.

Trial 1 is IMCgp100 with durvalumab or tremelimumab.

Trial 2 is MGA271 with IPI.

Is anyone on these trials?  Any advice or information?  What questions would you ask (I don't see any current efficacy data, and fairly vague side effect profiles)? Does one seem better than the other?

Dr. Luke gave a good basic explanation of each and we will discuss again.  I'm just having a hard time wrapping my brain around it all.  I don't want to throw in the towel on pembro, but don't want to be foolish either.  This subcutaneous tumor just blew up when I started pembro.  It's big, red, painful, itchy but it changes throughout the 3 week cycles which makes me think something is happening(maybe it's just something bad happening) I know the liver tumor is more important so we will see what that's doing.

Would it make sense to ask for radiation on the subcutaneous tumor?  Would you try ipi/nivo before moving to a trial?  

Thanks for any advice!  Caitlin

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baesill's picture
Replies 10
Last reply 4/4/2017 - 8:53pm
Replies by: Ed Williams, Anonymous, SABKLYN, Mat, jennunicorn, baesill

Hello everyone,

I am 33 years old and was just diagnosed with stage 4 melanoma, 7 years after I had stage 2A.

I gathered 3 opinions in NYC to kick off treatment. A veteran at NYU and another veteran at Penn both had same recommendation. I met with the young rising star at MSK and he had a different suggestion, but after he ran it by the higher ups, they changed the recommendation to match NYU and Penn.

I can't help but feel he got it "wrong" in our initial appointment and it makes me really worried about choosing him as the lead on my case. I know doctors are going to disagree, but the other veterans assured me this first choice was a no brainer. And if my oncologist is going to be lead on managing side effects of potentially dangerous therapy, maybe it's not wise to rely on someone with less experience.

All that said, I really want to start treatment now that the path forward seems clear (for now).

Has anyone switched oncologists within MSK before to a more senior doctor? Is it easy to use MSK for second opinions down the line, if you choose to have your primary oncologist at another institution?

I guess I am trying to figure out if it's easier to switch doctors within MSK...or if it's better to choose someone more senior at another institution and then try to switch back to MSK (with different doctor then my initial appointment) after I get my 6/12 week scans. Or does anyone have advice about getting second and third opinions after those scans?

I have this feeling that now that I've met with one doctor at MSK, it's virtually impossible to change within the team.

Just want to say thank god for everyone on this board! I feel so devastated that I can't get an oncologist I deeply trust at the institution I want to be at. Any advice would be so amazing!!

Lots of love to all.

 

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adriana cooper's picture
Replies 12
Last reply 4/3/2017 - 11:15pm

Crossing through the threshold to hospice care has been one of the most difficult and emotional experiences I have ever had.

On Friday, February 24, Adriana was re-admitted to the hospital only 10 days after her previous stay of a week, to try again to get her lower back and hip pain under control. Although she could walk and move about she was in great pain. On Monday she had day 11 of 14 of lumbar radiation and WBRT which she finished on Thursday as an inpatient. By Monday she had lost all strength in her right leg and by Wednesday she lost the use of both legs due to strength although she still had feeling in them. The loss of the use of her legs was exceptionally distressing for Adriana.  The plan early in the week was for her to go to a rehab facility in order to regain strength and learn to function using other methods at home including Hoyer lift and sling and slide board for transfers to the wheelchair and bedside commode. On Wednesday the Radiology Oncologist apologized and said the lumbar treatment didn't work as he had hoped. Her oncologist visited later and advised us to start home hospice care with a planned discharge on Saturday, March 4. He advised that she could resume taking the TAF/MEK that she had left at home but to not expect the same results (if any at all were to be had)  as she had experienced in October, when  first diagnosed with LMD, which completely resolved her pain within 5 days, as her “tumor load” is now significantly higher.

Although the social worker at the hospital as well as several others tried to reassure (me) us that hospice was the right path to take and that their significant knowledge of pain management and “comfort” (I hate that word and it's usage) would help us. We were quite skeptical (distressed) about what was to come. As much as we thought we we prepared for what this beast had in store for us we were not, and I was especially distraught. I could only see hospice as being there to help her die, and we were not ready for that yet. Knowing there really is no other treatment available, we still maintained hope in the BRAFi and planned on learning to live without the use of her legs as many others do every day due to car crashes and the like. The latter part of the week's stress was enhanced as Adriana was urged on several occasions by the attending doctors and hospice representative to complete a Physician Orders for Life-Sustaining Treatment (POLST) form (esentially  DNR/feeding tube/treatment desires in the event you code). She has also been  encouraged to change her choices by the hospice folks as her current choice to live isn't completely inline with hospice goals, creating a great deal of stress.

  During the early part of the week I purchased an adjustable bed frame for our mattress that we had purchased the prior week in hopes of allowing her something similar to the hospital bed so she could sleep. During the latter part of the week I scrambled to make plans and get supplies together to modify our living area (now reduced to a small bedroom, bathroom/laundry room with 36” stand up shower and. 25' hallway on the ground floor of the 4 level home that we live in.)  Items of relative urgency included moving the TV and cable to a wall mount in the bedroom to provide entertainment, building a plastic platform in the shower and ramp outside in order to easily move a rolling shower seat/bedside commode with occupant in for showering by one person, and modifying a sprayer attachment to the sink/toilet area to be able to clean the bedside commode in a sanitary manner as no one cares to have that next to their toothbrush or  where they shower. The most daunting was learning from the hospital OT/PT  and nursing staff how to safely transfer Adriana to the chair or commode without severely bruising my lovely wife or injuring myself. Also overwhelming for me was just the basics of toileting, cleaning and dressing. These are things you learn to do for yourself at a very young age and then relearn them for your children whom are significantly smaller than an adult. Most homes are not built ADA/wheelchair friendly and education for the tasks at hand are not taught in high school. No one ever thinks this is going to happen to them let alone plans for it. Care-giving is now redefined for me, although I am sure many of you have already achieved this level. With meds every 4 hours along with all of the other tasks including the chores of everyday living along with the fact that I am essentially her only caregiver, Saturday came and I was overwhelmed as I questioned if I could competently live up to the task. I only felt that I would miserably fail in my wife's time of  most need.

It was a pleasant day when we got home from the hospital and we went for a wheelchair walk down the block. Calm came to me as I realized we were home together with her pain under control, just as we had planned on the day that she went in to the hospital with the only difference being she can't walk right now. 

Well, it's been just over three weeks now and although getting up in the middle of the night for meds and toilet have been difficult, the daily routine is becoming a bit easier. Figuring out how we are going to pay our bills and get money for other needed home modifications along with regular living costs is a challenge, as I am now a full time caregiver, but we will get it figured out. Although hospice has provided some supplies and equipment we have found it necessary to purchase some of the (not inexpensive) equipment ourselves as it is more convenient for use in our home and  help maintain our independence. I know that hospice is here to help, but I am constantly reminded that it has to operate as a business. We have had to lobby for a specific (more expensive than the cheapest generic, but not name brand) brand of lidocaine patch as they work better. She is now being encouraged to switch off of oral delayed release Oxy (which is working well right now) in favor of fentanyl  patches due to cost. In addition, always in the back of my mind is that hospice's goal is not to prolong (or) shorten life, only to provide “comfort.” She is not done yet!!!

I have to say that one fear when starting hospice was that she would no longer have “medical care from those that we are used to” (did I mention I don’t like change) but the folks at Seattle Cancer Care Alliance have been here for us. The oncology nurse has called to check in, the anti-coagulation team has called about changing her blood thinner dosage as she had lost weight while in the hospital, and most especially the palliative care nurses have called me at least once every week and I have also called them with my concerns. Those ladies have truly been my lifeline in all of this.

About a week and a half ago Adriana was able to start moving her feet then her legs and as of right now she can kick me when she is sitting ;>)  pull her legs up toward her chest with effort and lift her hips with her legs slightly to help get her her pants on. We attribute this to her hard work and desire to live. We believe the TAF/MEK to be providing substantial albeit slow benefit. Her pain is most often at a 0 and she has mostly stopped taking Dilauded which was 4+ mg every 4 hours when she came home and are considering reducing her oxy. I have focused on making every effort to return to normal everyday environment and to live our life. We have been in the car, to the store and out to the waterfront beach that we enjoy with the dog. She has had a few setbacks, diarrhea over the last week has been a challenge.  We have been unsuccessful in defeating it with Imodium, pepto, and BRAT diet. She stopped BRAFi for 2 days (Fri-Sat) and thought on Sunday we might have it licked with no episodes (although no BM either) so she restarted BRAFi on Sun as pain resumed in her hip early Sunday morning. Adriana really believes the issue (in addition to nausea) is a side effect of the extensive lumbar radiation rather than the BRAFi as they have never been a problem before. I will post separately about the issue seeking advice as many might not read this far. I suggested that we stop the TAF/MEK again but she says no as she doesn't want the pain to return. Sadly also Adriana's dad passed away on Thursday and she could not be with her family in Ohio, we are thankful for Skype and Facebook to help us to be with them and they with us.

We continue  to live our lives, make memories and love one another and our families. We are grateful for all of you. We grieve with your losses and challenges and also feel the joy of your successes.

Best wishes to all.

Rob and Adriana

Adriana

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Lddaughter's picture
Replies 4
Last reply 4/3/2017 - 10:42pm

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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Bob B.'s picture
Replies 5
Last reply 4/3/2017 - 3:50pm
Replies by: Jamie1960, _Paul_, Charlie S, Anonymous

Several years ago I received melanoma (also basal cell) excision surgeries at Moores Cancer Center.   Previous to that I received several other melanoma excision surgeries.  All told, I’ve had 6 surgeries for melanoma.  

As we know, melanoma may return to a different location at any time.   One occurrence is usually followed by more.

(1)  Is aggressive melanoma considered a “chronic condition” for purposes of State or Federal Insurance coverage (MediCal, MediCare, etc)?                   

(2)   If so, how long between the appearance of new, non-recurring melanoma tumors does Melanoma continue to be defined as a “chronic condition”?

Thank you for your help.

Best wishes,

Robert James Beadle

The Only Good Legend is a Dead Legend.

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Anonymous's picture
Anonymous
Replies 7
Last reply 4/3/2017 - 3:26pm

My oncologist seems to think that being BRAF positive means nothing in terms of the disease as far as we know at the moment other than treatment options are different. But I've heard elsewhere that BRAF + means the disease is more aggressive? Is it more likely to spread from stage 3 to stage 4? 

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Scooby123's picture
Replies 2
Last reply 4/3/2017 - 2:06pm
Replies by: Julie in SoCal, Jubes

Hi all,

I had ippi 2 years ago and get pain in my joints especially in both rib cage area. The pain comes and goes. I know joint pain has been mentioned a lot over time with treatments, but anyone has had it in rib cage area which comes and goes. Can last a few days some times. At times I feel like I have been in a boxing ring so sore .

Scooby X

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VIve's picture
Replies 10
Last reply 4/3/2017 - 1:57pm
Replies by: VIve, Anonymous, cancersnewnormal

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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Christine.P's picture
Replies 1
Last reply 4/3/2017 - 2:22am
Replies by: Anonymous

A brief history: Stage 4a; tumors removed, from right calf and left elbow, skin graft, and lymph nodes removed under left arm in fall of 2015. Recurrance/new tumor just above inital tumor site in right calf in February 2017. Just had surgery (March 1) to remove this most recent tumor and was wondering about a few of the things in the pathology report. (Did 3 doses of ipi/nivo and have been on nivo alone for 9 months or so.)

I would like to know what the following terms might mean and, if anyone has had similar reports, what this might mean for treatment going forward. 

1. lymphovascular invasion present

2. perineural invasion present

I had a PET scan today and won't get to meet with my oncologist to go over the reports until Wednesday. Any information to help me understand what this means and to help me prepare questions will be greatly appreciated. 

Thank you!

Christine P. 

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Anonymous's picture
Anonymous
Replies 5
Last reply 4/2/2017 - 11:09pm
Replies by: jahendry12, LHiner50, Nick C, MikeW, Anonymous

I am wondering if others have nausea, decrease ability to do exercise and shortness of breath??

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 4/1/2017 - 10:33pm
Replies by: jrtufo, AliCat61, 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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Replies by: TexMelanomex, Anonymous, Nick C, KimW

I'm back in Houston y'all! Nestled into my hotel room and prepping for tomorrow as the results from the SNLB are going to be life changing either way. First, I'm really excited about getting this "pincushion" removed from my scalp either way that's a win for tomorrow! Second, I'm excited/anxious...ok, even nervous because I get my SNLB results back tomorrow. I feel like I'm prepared for a Stage III if that's what the news brings but the reality of the treatments is probably bothering me most (the back and forth to Houston, the possible-side effects, time away from work, cost, drain on my fiancee, etc., etc.) but none of that even comes close to possibility of taking on and beating the hell out of this insidious disease. Hope outweighs costs every time I run the algorythym.

I know many, if not most of you, had this night, the night before node results. Some of you might have received results "out of the blue' from a phone call so there was perhaps less suspense. Not sure I would prefer that. I think getting the results in person tomorrow will work better for me because if they are good Dr. Ross is getting himself a great big man hug. If they aren't so good, he's going to get a lot of questions from me about the next steps and we put together the war plan.

I got to thinking about the collective amount of mental effort this group (and me included) that has expended worrying about the "what ifs". Its normal, its human, its what we do, but just imagine if that mental effort we expended on worrying about this bastard (my new name for it, and lower case b at that) was spent doing something productive, meaningful, loving, or relaxing? We'd all be better off for it. I suspect the worry will get the best of us at times, but we can fight it, at least give it the old college try.

So tonight, when I'd rather medicate myself with several stiff drinks and pass out (don't get me wrong, I'm not a big drinker, it just sounds better than worrying), I'm going to write some letters to people who have a special meaning in my life. Fortunatey, yet sadly, there aren't that many.

I think, no, I know that tomorrow when I wake up I'll feel much better and hopefully so will a few really important people in my life no matter what the day brings!

For the spiritual warriors out there...prayers are always appreciated and welcomed by me. Good vibes and happy thoughts are also cool :-)

Tex

Tex

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/1/2017 - 10:10am

Ok, so I'm in. I always new that this possibility exists but never considered it for real.

I have family history of melanoma (my granparent died from one) and I had sunburns in my childhood and teenage years. Recently I had a termal burn on one of my moles. It was a small but asymmetrical mole. After the burn, may be a couple of months, the mole started to grow back. It grow to the sides of the scar and then stopped (it is small, less than 5 mm in diameter). A week ago it started (as I thought) slightly to itch. I do not know if I imagened it or not because it bothered me a lot (it became a bit bigger than it used to be, still assymetrical and it got way darker) - so I went to the doctor and got it out. 

Now the results returned and .. I have to wait for another results. So far it is all inconclusive. The diagnosis is abnormal, but as I understand from the report - the pathologist was worried about partially regressed melanoma. I read about how they diagnose regression and thought may be it was due to the scar tissue that the pathologist thought about regression. 

Any way, here is the report. I thought I will get some answers but now I'm lost. and I do not even know when the second opinion will be done (how long I should wait).

 

"This punch biopsy of skin has a compound melanocytic proliferation that is somewhat ill-defined with upward pagetoid scatter centrally and marked dermal lymphocytic inflammation, melanophages, and fibrosis. Immunohistochemsitry for Sox-10 highlights melanocytes, confirming the pagetoid scatter in the central portion of the lesion. HMB-45 is negative in the dermal melanocytes, which would favor benignancy in the dermal component of this lesion. The case is reviewed within our department with concern for a partially regressed melanoma with associated nevus. Accordingly, this case will be sent to ---- for definitive characterization; an addendum will follow.

FINAL DIAGNOSIS: Atypical melanocytic proliferation"

 

Now I do not know what to think - I guess, it is not benign. is it atypical mole? is it melanoma? do they suspect melanoma only because of the scar tissue (but the pathologist did not know that there was a recent injury to that area)?

I guess it looks more like a panic attack. because it is. I'm really scared. 

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Meeka's picture
Replies 6
Last reply 3/31/2017 - 6:42pm
Replies by: Meeka, AliCat61, Anonymous, debwray, betsyl

waiting for follow up biopsy (of course waiting is the worst as we all know) As having had breast cancer aprox. 4 years back I find the second time around is both easier anc harder. The harder being telling my family "hey guess what its not  blackhead" I feel uncomfortable talking to them about how I feel as I dont want them to go through it again. So thank you for giving me an outlet. I guess its time to put my big irl pants on once aain and suck it up like w all do. I have 2 spots 4mm and 3mm on my face (of course  just when my son is about to be married) hat will make some nice pics lol) well thanx a ah ain for the "ear"

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