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: AliCat61, jennunicorn, Mark_DC, Nick C, Anonymous, marta010

Hi all! I just need to vent about a most frustrating day yesterday. Roy was scheduled for a port implantation Monday. I had called the doctor over the weekend to express concerns about the port implantation due to a very nasty cough and persistent  low grade fever. They called in Cipro and he started it Saturday, We were told to go ahead and come in Monday. We arrived at 10am. After bloodwork, ekg, etc and other prep, I was able to go back to the surgery waiting area. I spoke to the doctor and anesthesiologist and again expressed my concerns. Fortunately, they did an x-ray which indicated penumonia and called a halt to the port. His doctor is right next door to the hospital so they sent us to him. After waiting for quite some time, the RNP saw us and sent  us back to the hospital for another x-ray (different view). She said we could go home after the x-ray as they only needed it for comparison purposes in two weeks. Back at the hospital, they had not yet discharged him, but insisted on doing so and providing a new case # to do a 2nd x-ray, all of which took time. By the time we got home it was 4:30 pm. Poor Roy had not eaten since the previous night, and had spent almost 8 hours at the hospital and came home without the port and with his 2nd treatment of Yervoy/Opdivo delayed by at least a week, depending on what  x-ray shows in 2 weeks. I stayed positive for him. but was fuming inside that he had to go through so much when he felt so awful. I know many of you have had days like this, probably far worse. I've got my big girl panties on but the elastic was dangerously close to snapping yesterday! Thanks for the ear! Prayers and hugs for you all!

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Replies by: TexMelanomex, 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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mrspink's picture
Replies 16
Last reply 3/28/2017 - 3:25pm

Background. My dad was originally diagnosed with melanoma on his chest back in 2013. Checked 8 lymph nodes and found nothing. After that I don’t think he went back for any follow up.

March 2017. We thought stroke with loss of some motor function and speech. MRI showed 2 large brain lesions. 1st tumor removed March 13th from the left side in emergency surgery. Confirmed melanoma (approx. size of ping pong). Going in for 2nd tumor next week.

Small spots are seen on his liver and lung.

They are talking targeted radiation right now. I’ve only had about a week to process this and haven’t been in direct contact with the Dr’s yet but I’m waiting for a call from his Oncologist and will be speaking with the surgeon at the next surgery.

So if anyone is willing to help point me in the right direction I would appreciate it. Questions for Oncologist? From what I’ve read this is stage IV correct? And from what I’ve read not good. Should I be talking quality of life?

Questions for the surgeon? I know they are mostly concerned with surgery and not prolonged treatment but I want to get as many questions with him while I can.

I appreciate any tips or tricks. We’re in California. I'm more than likely the person that will need to be asking the hard quetsions for my family. 

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JustJaren's picture
Replies 4
Last reply 3/28/2017 - 1:02pm

HI All,

In a sea of many that are suffering so greatly I actually feel bad for posting my miniscule worries, but this is a crowd that will understand.

After an SLNB in the groin and finding only '3 or 4' cancel cells (not enough to do BRAF testing) I am on watch and wait. Surgery was January 25th. 

While my recent trip to see the oncologist assured me that the remaining swelling in my groin is still normal after surgery, the last few days I have felt what can only be described as a small bruise, right above my pubic bone. 

In the shower last night I could almost convince myself that I felt the dreaded 'pea sized lump' but now today I do not feel it and I am having a hard time getitng the 'bruise pain' to resurface again, though my lump from the surgery (in the groin) has become noticeable, not painful. 

My question is this- I know there are DEEP lymph nodes close to the top of the pubic bones, but I don't think they would produce anything palpable. Has anynoe experienced an in-transit lump as a bruise like feeling?

As always, your candid and thoughtful responses are truly appreciated!

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fem's picture
Replies 3
Last reply 3/28/2017 - 10:24am
Replies by: fem, Bobman

Hello,

I'm starting this by saying I know that my fears are anxiety-led and am seeing a therapist. These fears are driven by my Mom passing in Dec. 2016 from breast cancer.

I have a lot of moles, 200+.  I have had 7-8 biopsies over the years, and  two in January came back mildly atypical.  I know that is not a concern in itself, but I am now spiraling on DNS and FAMMM statistics.  My dermatolgist said that 'based on the way my moles look' I am at a high risk for melanoma.  Most are not big, probably 15-20 are 3-5mm with the rest small.  I also noticed a lot of new ones after being  pregnant (second daughter born Sept 2016).  Dermatologist didn't use the words DNS but she was getting my biopsy resutls from a different doctor who I wasn't a fan of and then we were going to make a treatment plan.  I'm guessing I have the syndrome.

 

Also my uncle has had 2 primaries but nobody else in my family that I know of. Some websites include this in the FAMMM definition.  

 

I'm just trying to figure out if my risk is say 30-50% (which my anxious mind could handle), or closer to the 100% reported for the FAMMM groups.  I know nobody can really give me an exact answer, and I will obviously talk to my derm more.

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stevenallenschwartz's picture
Replies 13
Last reply 3/28/2017 - 8:46am

I just had my pet scan today after 5 infusions of Keytruda. Should hear within the next 24 hours where I stand regarding the efficacy of the treatment. Anxious but hopefuly!!!!

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Coach337's picture
Replies 7
Last reply 3/28/2017 - 7:46am

Diagnosed with IIIc Melanoma in November of 2015. 

 

Following several surgeries, the first treatment plan was Yervoy.  This wound up being scrapped as the first infusion came with a little bonus - an eight week bout of colitis that would knock my socks off multiple times each day.

 

Plan B was T-vec.  Received injections for three months with minimal side effects.  However, my first set of full scans showed that this treatment wasn't really accomplishing much - other than pissing the cancer off as it continued to grow and spread.

 

Third time's the charm.  I'm now approaching my sixth month of Keytruda infusions.  After the third month scans, I'm miraculously NED.  However, I'm not sure if it's a blessing or a curse.  There are a few of the regularly associated side-effects (fatigue, joint pain, headaches, muscle aches, feeling cold) but those are gladly acceptable considering I'm alive and kicking.

 

Here's the problem:  I've developed periodic crushing chest pain.  The frequency (several days in a row to once or twice a week), intensity (from 2-12 on a scale of 1-10), and duration (30 minutes to 24 hours) is always random.  When these episodes hit, I am powerless and completely shut down (in addition to being paralyzed by pain and anxiety).  I've had every cardiac and gastric test imaginable and check out fine.  The doctors can't really tell me what's going on.  I'm not sure if this is the Keytruda, a combinaton of the three types of treatments I've had, or something else alltogether.  It concerns me, because what should be the excitement of being declared NED is completely overshadowed by these episodes.  February and March have been extremely rough, and I often find myself wondering if I should be rooting for the cancer (or even speeding up the process myself) because there's no way I want to continue this.  Not just from a selfish standpoint either - it pains me to see what this is doing to my family and relatives.   Just curious if anyone has had a similar experience?

 

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Anonymous's picture
Replies 2
Last reply 3/28/2017 - 6:06am
Replies by: Anonymous, MaPerny

Hi,

Had three doses of ipi nivo but late Jan scan was only after 2 doses due to side effects.

Jan scan showed progression from liver only to skull, spine, pelvis, lung and various lymph nodes.

Have had radiotherapy following urgent mri to spine but no further treatment since liver labs spiked when dose 4 was due. Amwaiting for further pelvic radiotherapy.

Converstions with oncology team now seem to focus on dealing with pain.

Need second ct scan to confirm interval progression - probably this week- then conversation with oncologist, an assuming scan will show progression again as seems likely given pain... and extra info he has from spine MRI.

So question is what next..... onc does not seem keen to treat with more nivo-due to liver enzymes.

Am BRAF wild type so that side is out of the question. Team started tests for immunocore trial... but think steroid use puts a lid on that...

Til is not an option here....think am likely to be offered dacarbazine chemo or palliative care- 

Am guessing Keytruda/ pembrolizumab likely to fail if nivo failed.

Any advice / experience with treatment after failing combo very welcome. 

Desparately seeking answers...

 

 

 

 

 

 

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snow white's picture
Replies 7
Last reply 3/28/2017 - 5:26am

Hi All- just wanted to update on Dad.  He has now completed his 3rd dose of IPI.  He will receive his last dose the middle of April. I received an email from his doc and she said they will rescan after his last dose and then decide where to go from there, most likely Keytruda.  So far for side effects he is very fatigued although he continues on his daily rountine, working in the yard, grocery shopping etc.  His sleep has been up and down, one night 10 hours the next 4-5.  We have also noticed that he is very grouchy, doesn't want to be bothered.  I COMPLETELY understand this having gone through 18 chemo treatments, I disliked everyone by the end.  We are having his labs drawn to keep an eye on the pituitary etc.  Doc. says at this point that we are in pretty good shape, of course that could change at any moment.  Sending positive vibes and virtual hugs to all of you out there fighting and also to the caregivers that go through so much.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Shaneswife's picture
Replies 3
Last reply 3/27/2017 - 10:24pm
Replies by: Charlie S, David McCaw

So found out Shane's insurance denied yervoy and we expect them to deny the keytruda as well. My insurance doesn't cover keytruda and still pending a decision on yervoy. Neither drug is funded in Ontario so it's not looking good for switching to immunotherapy. I guess he will have to stay on the braf and mek inhibitors even though he's only had a mixed response with progression to the combo.

Janis

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TexMelanomex's picture
Replies 10
Last reply 3/27/2017 - 8:47pm
Replies by: TexMelanomex, Nick C, Anonymous, Gene_S, Momofjake, jahendry12

Hey Warriors!

I completed the WLE & skin graft on my scalp and SLNB at MD Anderson on Tuesday and returned home today. I'm a little punchy from the high dose of Norco but I wanted to give an update (so please forgive any typos or ramblings).

So...the lymphocyntigraphy was the easiest part of the process by far. It took about 90 minutes and 4 injections to get all the 3D pictures to work from. These stung a little but not too bad as they were on the scalp.

Then it was on to pre-op where Dr. Ross estimated the process would likely take about 3-4 hours (it ended up taking 5.5 hours). It turned out that I had 4 nodes at three sites that lit up and 2 were very deep in the side of the neck, the other two were in the back of the neck. I also had a skin graft (from my bum of all places!!) along with a bolster placed. I guesss people were right all along, I really am a "butt head". Dr. Ross finished up with me around 8:00 pm and my fiancee was the only one left in the waiting room. He spent the time to sit with her and explain how things went which she really appreciated. (Kim, he hasn't changed a bit and was very compassionate with her as she was worried sick being the last person in the waiting room that day).

I was kept overnight in post-op due to pain (which I really cannot remember having at this point) and the administration of dilaudid (if you've ever had dilaudid, which I hadn't, you can attest to what an incredibly powerful drug this is). I'm acutally glad they did this because it made me feel a little better being at MDA for the night since this was my first surgery of any type. I like to think I have a high pain tolerance but apparently I wasn't giving them a good answer on the 0-10 pain scale. To be honest I was still so loopy from anesthesia I don't recall having the conversation at all but was reminded of all the goofy things I said/did that night by the attentive nurses.

Dr. Ross was back in action early the next morning to come see me and discharge me. Overall, very impressed with him and MD Anderson. The bolster feels weird but will be removed next week and hopefully I will have results from the lymph nodes the same day but it may be a few days after the removal. I'm very interested in seeing what skin from my bum looks like on my head. Between doses of Norco I'm still seeking the best way to camouflage this bolster...fortunately its positioned high on the back of my scalp so I can manage to fit a baseball cap over it, a bandana (do rag style) seems to work, but the real trick will be next Monday at work. I work in a professional environment and a hat is kind of hard to pull off, a bandana simply wouldn't fly, so any suggestions are greatly appreciated.

Despite the purpose of this trip to Houston I found ways to enjoy the time down there. Going to the Galleria, trying some local fare, and simply enjoying some simple things was great. Of course there isn't much enjoyable about surgery, but even in that I tried to remind myself (when I was coherent) that hey, I'm alive and I'm in the fight! The waiting for things to happen was really bothering me and even though I might not get the results I want from the SLNB I at least got the primary cut out and  I can prepare for the next phase of battle.

I want to thank all of you for words of support and encouragement, for sharing your experiences and for being part of this community. In the short time I've been a part of this I have learned a ton and really appreciat all of your experience and strength!

 

Tex

 

Tex

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Christine.P's picture
Replies 1
Last reply 3/27/2017 - 5:22pm
Replies by: newmanmark

For those of you who have had mets to the pancreas, did you have any symptoms that triggered suspicions or were they just found in your scans? Any info will be helpful. Thank you!

Christine P. 

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Hukill's picture
Replies 10
Last reply 3/27/2017 - 3:52pm

I will speak with my pharmacist next week but I was wondering if anyone had any info on this. Before starting the ipi/nivo combo my wife and I were specifficaly told that we could not risk exchanging body fluids due to risk of transfering ipi/nivo to her. We were told to not even share bites of food or use the same spoon ect. We were also told to use condoms. Did anyone else on the combo receive this information when you started treatment? If so where you given a time frame after stopping treatment when you no longer had to worry about transfering body fluids?

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jazztubs's picture
Replies 3
Last reply 3/27/2017 - 2:47pm

Greetings All,

I'm looking to connect/hear from anyone who might have had a similar journey to the one I'm currently on.

It's been a wild 3 years, to say the least.  Here is the short story:

-Diagnosed over 3 years ago, with a large bleeding mole on my head

-Resected this area, with local wide excision

-Multiple lymph node disections, and the paratid gland removed

-1 year of high-dose interferon

-Developed Lung Mets: Did 6 cycles of high-dose IL-2 under Dr. Brendon Curti (highly recommend)

-All Lung Mets either disappeared or stopped growing--1 year later, no issues in the Lungs

-Rewind a bit...December of 2015, had a seizure. Found 2 Brain Mets. Treated with Gamma Knife. All good, until this spring, when one continued to swell/grow, etc. Had a Craniotomy to remove it. Was paralyzed on my left side, but with therapy and with the swelling going down, got around 95% of function back. Excellent Surgeon: Dr. David Adler.  

-Since the surgery, I have had a few small seizures.  I'm about to have my 3 month MRI to examine the brain. Currently just taking anti-seizure meds, and not doing any other therapy

-I've experimented with cannabis treatments as well, including high-dose Rick Simpson Oil--and while I'm not certain this has helped with acute issues, it has certainly helped with maintaining healthy body weight and overall positive disposition and dealing with depression.

OK...So, fast forward to today.  I'm not going to lie and say I'm not affraid about what lies ahead: I'm very affraid.  So far, I've taken each day at a time, and have been super positive in my disposition--it's all I have left.  Recently, I've had to stop driving, riding motorcycles, and doing many of the other things that give me a sense of freedom and enjoyment.

Knowing that the IL-2 doesn't work over the Brain/Blood Barrier, I worry each day about what the future holds.  Is it more Brain Surgery? Is it sudden death due to a seizure? etc. etc. I know darn well no one can answer that, but I wanted to hear from others that might have had a successful IL-2 run, and then hit a wall with the Brain Mets...  In short, is there any hope for life after Brain Mets?

 

-Ben

Benjamin

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Hukill's picture
Replies 9
Last reply 3/27/2017 - 1:53pm

I started in July 2016 with 7 mets between both lungs. Had a scan on 12/29/2016 which came back near complete resolution so another scan on 3/16/2017 came back the same with 1 met under 2mm in size and no new mets. I would have liked the word "near" to be gone but I went from 3 down to 1 and it is really small. Will continue the nivo every 2 weeks until further notice. I have been on the ipi/nivo nivo alone for 9 months now and still have 5 side effects but still working full time.

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