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: Bubbles, BeckSTAR, Ed Williams, Anonymous, Patina

Hello, I am new to this site.  My father was diagnosed with stage IV melanoma, summer of 2015.  (inital spots removed from skin on and off years ago, big one was from neck that they think must have spread even with removal of lymph with clear biopsy... despite routine check ups the metastasis was caught very late).  Summer 2015 showed a large tumor in liver and small spots in lung and gluteal areas.  He did well on Pembro, lasted almost 1.5years (until a couple weeks ago) without any resistance.  All spots disappeared except a "shell" of the liver tumor, which is now growing again.

Now he is about to start Glembatumumab Vedotin next week after all the biopsy/scans/testings are completed for the study.  Anyone currently on this study or have experience with it?  Things to expect, look out for?  I am a nurse myself, but all this is pretty new to me.  I take care of the little humans (peds). 

My father is 67, but in shape/active... walks/jogs every morning and head captain/manager of a small marina. 

Thanks in advance,

A concerned daughter heart

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Anonymous's picture
Replies 7
Last reply 12/8/2016 - 5:42am
Replies by: Amanda, _Paul_, jpg, Ed Williams, Mat

August 2014 diagnosed from completely healthy to stage 4.

Mets in lungs, liver, spleen, stomach, shoulder, adrenal glands, axilary glands.

Took Keytruda in January 2015 every 3 weeks.

Worked immediately and over course of 25 treatments and 5 CTs most everything disappered.

PET/CT just revealed that I have a new 3.6cm x 1cm tumor in small bowel.  Wasn't there in July.

1) Was never a complete responder as CTs still showed small stuff even though most disappeared.

2) REALLY disappointed that it looks like one got passed the goalie and it spread to a new area I hadn't had mets before (small bowel)

3) Consult this week but assume plan will be to resect the small bowel and stitch it back up, removing mass.

4) I have TIL cells in storage at MD Anderson from 2 years ago.  They'd like me to come back to harvest these new cells in bowel.  Wonder if I can stay local (live in a major city with good cancer center) and have the T-cells shipped to them?  I guess I'll find out at the consult.

5) Do you know of situations like mine?  Keytruda works for 25+ treatments, responded incredibly well but not to the point of NED, then new sizable hypermetabolic tumor pops up?

Obviously fortunate to be a responder.  New developments are frustrating like we all experience with new news.  Thanks for any feedback and take care!

Matt King

Diagnosed Stage 4, July 2014

MD Anderson, Dr. Patrick Hwu

IU Health Simon Cancer Center, Dr Ted Logan

Currently responding to KEYTRUDA since January 2015

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Cyndrae1's picture
Replies 2
Last reply 12/7/2016 - 10:28pm
Replies by: Terrified, Patina

Hello everyone I have been lurking in the background reading everything.

Dave had a piece of melanoma removed from his back in 2011.

No problems until Oct this year (2016) when he started having rib pain.  Lots of misses with the Dr. and finally did a CT scan.  Found lots of lesions in the bones, lungs and liver.  He tested positive for the Braf and has been on Dabrafenib (Tafinlar) and Trametinib (Mekinist) for about 4 weeks.  Before that he did a couple of rounds of radiation to help with some of the pain.  For pain, he is on Fentanyl patch and Oxycodone.  He had his first dose of Zometa to help with bone regrowth (I think).  He lost 50 lbs and is very sickly.  He has had several days now when he has been relatively fine.  Next week we go in for the CT scans to see what is happening on the inside.

My question to you is now what?  I know you can’t answer as a Dr. but with all the experience here I thought I could get some ideas of what others have gone through from here.  Do they stop the Tafinlar and Mekinist and he starts to get better?  This is hard to believe as I was sure he would die soon.  But as he looks now this might be Dave 2.0 and we get on with our lives.

Thanks for any ideas.

Cindy

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Paige712's picture
Replies 4
Last reply 12/7/2016 - 8:19pm
Replies by: Thefranster, UrsulaZ, POW, Linny

Hi my name is Paige and just recently i've noticed a strange medium brownish coloured mark under my right big toenail. it's in the nail's right bottom corner and is around 5-6mm vertical and 3 mm horizontal so fairly rectangular.

Now I'm just hoping it's a bruise but do you think it could be something worth investigating?

Thank you :)

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Hello,everyone!I strongly need your advice !My husband has got melanoma stage 4 with various mets in nodules and brain.As we live in Russia the access to new drugs is impossible.But this is another story.In March when the mets in liver were found we decided to collect money and we did 4 shots of keytruda.But we stopped because of lack of money.In July we checked the whole body except for brain.All mets in liver have gone but nodules stay the same.In October we found 20 mets in brain and again various nodules.Did Gamma-knife twice and on the12of November did Opdivo.On Saturday we will plan to do the 3 shot.But yesterday my husband felt himself very bad.Diziness,weekness,vomiting once,some memory problems.Our blood counts drop twice.Our doctors told us that this is the end.That no use to do Opdivo or Ct as our lymphosytes are dropping and this is the marker that opdivo does not help.Please,I need your advice/You are more experienced than our doctors.What to do?Does anyone have the similar situation?

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Aloha14's picture
Replies 5
Last reply 12/7/2016 - 6:14pm

I was recently diagnosed with a lower leg melanoma after having a shave biopsy, and never had any cancer before so this has been really scary. I'm glad to find this forum. I met with the surgeons (Melanoma Specialist/Director Surgical Oncology) yesterday and I'm scheduled for surgery this Friday. The procedures were explained to me but of course I've got more questions. 

I'm  wondering about how much pain to expect after these surgeries? Did anyone require heavy pain meds and for how long? Also, for the test to find the lymph nodes does it require going inside a tube like an MRI does? I wonder how the doctors know where to cut for the excision without films to go by?

Thanks for anyone that can help answer these questions or give me more information about their experience. 

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clisc's picture
Replies 9
Last reply 12/7/2016 - 5:02pm
Replies by: clisc, Linny, jvictoria, Anonymous
hi!
 
Few days ago I noticed small dark spot on my 4th toe's nail.
The dark spot is localized probably below the nail or in its structure- I'm not sure.
 
I play football once a week but I do not remember any impact that may caused bruise.
 
I do not know whether the spot is moving as the nail grows. I need more time to analyze it. I'll do photos once a week to notice it.
It's possible that the spot is present from few months. I remember that I saw little dark spot but I thought that it was caused by football hit and I ignored this. I do not remember how big was that (maybe the same size or smaller).
 
Here is a link to the photo of this toe.
 
Is it possible to predict on the basis of the photo? What could be the reason? I'm afraid some serius like subungual melanoma. The photos of melanoma over the internet shows advanced stadium so it's hard to compare. 
 
What tests should I do? Observation & photos? Dermatoscopy? Bunch biopsy? Radical biopsy (Surgery to remove the nail)?
Biopsy is best for sure diagnosis but I'm afraid of Radical biopsy related to pain and complications (this spot may be nothing serious!).
Would the punch biopsy be suitable for my case? Should I wait few weeks and see whether or not the spot movina as nail grows.
Wouldn't the puch biopsy be noxious in case of melanoma?
 
Which tests should I do first and where to look for help?
Is dermatologist will be able to conclude anything on the basis of the inspection?
 
Please help! I have a "small" problem, many questions and no answers.
 

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Aaron's picture
Replies 1
Last reply 12/7/2016 - 3:13pm
Replies by: Aloha14
Aloha14's picture
Replies 4
Last reply 12/7/2016 - 3:12pm

Prior to the sentinel node biopsy I'm scheduled for lymphoscintigraphy. Does that mean I have to be placed in a tube like a closed MRI machine? I'm really clausterphobic. The surgeon didn't explain this to me but I've been searching for information online. 

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jeffah77's picture
Replies 4
Last reply 12/7/2016 - 9:05am

Hello Everyone,

First time poster. I'm sure of you that are regulars here all see alot of these type of posts. But I'm waiting on my biopsy results and need to vent, and maybe get some assuring words.

A little back story. I'm 39 1/2 years old. Single male. Had a very bad sunburn when I was 19. And about 6 or so years ago, I did visit a tanning booth. (I'm still mad at myself for that).The little extra kicker is that about a year ago, I started taking small doses of Cialis, bc I had "situational ED". Basically performance anxiety. The reason I even went to get checked at the Derm was that I saw an advertisement on TV about Cialis being linked to melanoma. 

I had recently had a mole that got inadvertantly scratched off while my back was itching. It blead a little. But scabbed up and felt fine. But that commercial really scared me. So I scheduled my visit, and saw my derm yesterday. He took one look at that mark and said "sebborheic keratosis". I was relieved. But then he and his attending intern did a quick check of the rest of my back. He asked if I had a family history of melanoma. I said no. He asked if I wanted to start it (keep in mind he and I are relatively close, so he wasn't being unprofessional). If anything, that remark gives me hope that it's nothing. He noticed a mole that was brown with a black spot, and the intern said it looked like there were other raised black spots on the border. So they did a biopsy to send it off. I asked what he thought. He replied that the odds were that it was nothing. But he also said there's another spot we need to watch on my lower back. It's brown with a faded border.

Making it even more difficult is the fact that I suffer from occaisaonal outbreaks of facial herpes on one ear, first acquired on my finger, from a gymnasium , that spread to my ear. All the stress over the past week caused a flare up of that, which in turn made my lymph nodes seem sore, but they're not palpable, so it may even be psyco-somatic. But all I can think about is that little dot already reaching my nodes already.

The wait is killing me. My sweet girlfriend (who I'm proposing to next Saturday!), assures me everything will be fine. But I just have this gut feeling... It's like my life has been so perfect, but this is the price I'll have to pay for or it something.

I guess I'm just looking for some assuring words, and/or some empathy.

Thanks bless you all!
Jeff

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Shaneswife's picture
Replies 7
Last reply 12/7/2016 - 8:31am

2 weeks ago they scanned my stage 3c husband for pneumonia cause of a persistent cough. Didn't find anything on the scan. Fast forward to a week ago. Hubby has sudden stroke like symptoms. Mild ones but noticeable. Take him to the er and they put him on blood thinners and do a cat scan on the brain. 8 Mets found most over 1 inch. Then an mri of the brain follows and they find 2 additional tumors on the brain stem. Severe brain swelling as well and 2 of the tumors are hemorragic. So they stopped the blood thinners. Get a full body scan CT the next day and it shows both lungs and liver had dozens of tumors too many in fact to count on the preliminary report.

They are finishing the last 7 treatments to his groin from his lymph node diagnosis in August for radiation. Then we think it's on to whole brain radiation and if he survives long enough then they will try a braf inhibitor.

With how fast this has spread - just 2 weeks to have dozens in the lungs, we've moved Christmas to 2 weeks early. The family has all come from other provinces to be here with him.

It's just all so unreal. My love is up and walking and talking and smiling. So happy to have his family here. I fake all my smiles and I'm severely depressed with anticipatory grief. I just want to stay in bed all day. But I can't and I won't as there is so few weeks left with my love. We know that when it starts to go downhill it will be quick but I can't help but wish and live in my fantasy land in my head that none of this is really happening.

Hospital sent him home with nursing care and palliative care and we are engaging with the hospice today.

I see so many strong spouses on this board and I'm amazed at your continued strength. I don't know where you get it from or how you do achieve it. But kudos to you all for being so strong.

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Skunkwheez's picture
Replies 12
Last reply 12/6/2016 - 11:19pm
Replies by: _Paul_, Anonymous, Skunkwheez, jennunicorn, Casitas1, Hukill, Gene_S

Hi everyone! I've been lurking on here for a couple of weeks and have learned so much from all of you! My Dad (age 62) was diagnosed with Melanoma on the back of his head (small bald spot). Initial biopsy showed 1.3 mm but he had a wle and sentinel biopsy done. The lymph nodes were all clear but the tumor was actually 4.6 mm! That put him at a Stage 2b. He is scheduled for a pet scan in a couple of days but I am curious if there is anyone else that had such a thick melanoma with no lymph node involvement? And a clear pet scan?

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Question, my husband has brain lessions bleed he is on a antidepressant and was to start vemurafenib and cobimetinib with his keytruda. Now pharmacy says interactions with vemurafenib and cobimetinib so doctor wants him to wean off antidepressant before starting the combo. I have read antidepressants can cause brain bleed . Wondering if anyone has heard of this . Thanks, cathy

Cathy Jewell

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Anonymous's picture
Anonymous
Replies 7
Last reply 12/6/2016 - 5:02pm
Replies by: Anonymous, mary1233, wendipam

I received a diagonosis of Vulvar Mucosal Melanoma October 2016. After two surgeries to excise the area, my Staging is IIB3. All cancer cells have been removed, no lymph node involvement and no other tumors present.  I have seen doctors at Mayo Clinic and locally. With a 50-50 chance of the melanoma coming back, my options are 1) Do nothing. 2) Cisplatin with Temozdomide 3) Ipilimumab.  First option is out of the question. I want to be just as aggressive as the cancer is.  The two remaining treatments; the Chemo (Cisplatin) is backed up with the ONE study done with Stage II and Stage III MM patients.  This is the ONLY study done exclusively on mucosal melanoma. The results were very favorable.  The second treatment, Ipilimumab (according to my research) is for 'advanced' mucosal melanoma or skin cancer.  I do not have skin cancer...that would have been an awkward sunbathing position!  Both treatments are promising.  I feel I have one chance to get this right and typically I can't pick the winner out of a one horse race. I've read several threads here, and I hear a lot about Ipillimumab (Yervoy) but most are concerning more advanced staging or skin cancer.  I would like to hear if someone has done a head to head comparison on the two treatment options...or opinions or arguments for or against Cisplatin w/Temozdomide and/or Ipilimumab for Stage 2B3 and wanting to stay 2B3. God Bless and Thank You!

Robin

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Mat's picture
Replies 3
Last reply 12/6/2016 - 2:47pm
Replies by: Mat, Bubbles, Polymath

In light of some recent posts and the NYT article on diabetes/side effects, I'm curious--for those on ipi/nivo, have you stopped or taken a break from nivo?  I started the combo in January 2016 (and am very grateful for stable results since), so I've probably had ~20 infusions of nivo.  I've also been on prednisone (20 mg/day) for most of the time for varying side effects (all relatively manageable and minor).  I've started the conversation with my onc on taking a break for a month or so (not necessarily stopping) assuming continuing stability at next scans.  No final decision yet and am curious about others actual experience with ipi/nivo.  (I've seen others' post over time on nivo or Keytruda alone.)  Thanks.

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