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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Anonymous's picture
Anonymous
Replies 2
Last reply 11/5/2017 - 6:45am
Replies by: Anonymous, geriakt

Hi there, 

A few days ago i noticed my baby toe nail had a light brown line in the middle of it, i thought how unusual as i hadnt banged it in any way so knew it wasn't bruised unless i hurt it without noticing as i do bruise easily.  I looked up on google for what it could be and of course read about melonoma :(  this has really scared me and i felt sick as soon as i woke up the next day,  I wasnt going to say anything to anyone but i decided to call the doctors and tell my partner he of course told me not to worry and hes sure its nothing but of course he has to say that lol.. the doctor saw my toe nail and said lines arent really anything to worry about however he will refer to dermatologist at the  hospital incase of trauma under the nail. Now i dont know if hes just saying its nothing to worry about to keep me from worrying or if there really is nothing to worry about.  My dermatology appointment is on the 13th November and i am so scared about it, my partner is coming with me but i am praying to god it is just something silly! 

 

Anyone else had something similar and its been ok?!

Any comments would be welcome :) 

Thank you x

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Simon99's picture
Replies 42
Last reply 11/4/2017 - 6:03pm

Hi All,
I haven’t posted on here before although joined earlier this year.

My wife was diagnosed with Melanoma brain tumours in March this year. At the time we was told that she would not last very long and that there was little that could be done due to number of tumours (4) and their location.

They tried her on Keytruda for a very short while (1 infusion) but she went down hill very rapidly. She was then transferred to Dabrafinib/ Trametinib which has worked well for a while and reduced tumours by 50% in the first 3 months. Her scheduled scans are 3 monthly and on the next scan we was told her tumours had stabilised and had not not grown but not shrunk any further.

She was at this point however getting headaches, we informed the consultant (Melanoma Specialist) of this and she remarked that Tracey shouldn’t be getting headaches and scheduled her in for an MRI scan. Her headaches have persisted now for a month and are getting worse. The results of the scan have come back and are showing that 1 of the 4 tumours has increased in size. This is in the area that holds short term memory (one of her frontal lobes but i cannot remember the technical name).

Her current condition is that she getting a little bit not with it in mind (slightly dazed but coherent) she is battling between headaches and nausea and tiring quickly. She was put on 4mg of dexomephazone 3 days ago and Would say it maybe helping her symptoms gradually. 

We have a meeting with her Melanoma specialist tomorrow to discuss what if anything can be done. I have to say I feel petrified at this point as it was indicated at the beginning that there was not really any other options other than the Dabrafinib/ Trametinib that could help.

We was told surgery is not an option due to quantity and location of the Tumours.

I have noticed Gamma Knife seems to keep getting mentioned on this Forum. Could anyone tell me a little more about this. Are there areas of the brain that this is not good for?

Any opinions and experiences would be appreciated as I am going to want to discuss best options for my wife with as much knowledge of what could be available as possible.

 

Simon and Tracey

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Gene_S's picture
Replies 6
Last reply 11/4/2017 - 5:36pm
Replies by: Rgodsave, sweetaugust, Anonymous

 Efficient Skin Cancer Treatment (Melanoma) – Cancer is a result of DNA mutations multiplying too quickly for your immune system to catch up. Caused mainly by inflammation, the thymoquinone and thymohydroquinone properties in black seeds have been found to be effective in it’s treatment. Known mainly for it’s anti-inflammatory properties, black seed oil has been proven to prevent and treat many different cancers, including skin cancer. This is again due to the potent anti bacterial and anti inflammatory properties it contains, the 2 main properties of black seeds.

The way they work is by targeting your white blood cells, thereby boosting your immune health and killing cancer cells.

https://www.diamondherbs.co/101-black-seed-oil-benefits-to-consider-whil...

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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JC's picture
Replies 26
Last reply 11/3/2017 - 9:18pm
I had a routine Dr appointment yesterday, did bloodwork, palpated my lymph nodes, etc. . I decided to go ahead and get a chest x-ray done, since I never did from a year ago since my 1A diagnosis (figured get a baseline in case would be useful in the future), even though Dr said isn't necessary with an early thin lesion like mine, no symptoms, etc.. He called back today and said there are a few spots of concern in the left lung, and he wants me back today for a chest CT with contrast. I'm in shock. I'm shaking. All this time I've been hearing 95+% survival rate for 1A lesions like mine, 0.3mm, 0-1 mitosis, radial phase, no significant regression, no ulceration, negative node biopsy, and now I've got a concerning chest x-ray, and they want me back today for CT scan. I don't know what to think, I feel like this is the beginning of the end and I'm now on a path to the unthinkable. I have young kids, I'm only in my 30s.

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nancyg's picture
Replies 5
Last reply 11/3/2017 - 11:49am

Can Melanoma that spread to the skull spread to the brain?   It has not happened yet...thank God... Had a brain MRI... Last Friday... Results negative (Soo happy).. Dr. said chances are slim of it spreading to brain???Hoping that is true,but not believing it.

On a side note, dr described my husband's response to ipi as "mixed".... He had considerable shrinkage in his chest and tumor on lung.... But PET and Bone scan show three new tumors.... So we are thrilled about the shrinkage, but again worried.... They are trying to get the insurance to approve another round of ipi...the battle of this beast continues..

Any input you have would be appreciated!

Thanks and God Bless you all

Nancy 

 

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Kristi A.'s picture
Replies 9
Last reply 11/3/2017 - 10:42am

Hi everyone.  I was hoping someone could give me some advice on who to contact about headaches and dizziness I have been having. They have been going on for about a week. At first they were coming later in the day but now I am waking up with them and they progressively worse as the day goes on. I'm stage 4 melanoma (bone, kidney, lung mets) but have been off Keytruda since July. My last Pet scan was also in the middle of July and that came back clear (NED) I developed severe joint pain from the Keytruda so i have been seeing a rheumatologist who just said last week that based on tests and symptoms I could possibly have SLE (lupus). With all the different doctors I see, I don't know if I should contact my PCP, rheumatologist or oncologist.  I know that some patients with lupus experience headaches and I also know brain mets can too. I am not scheduled to have my next PET scan until November 15th. So it's been almost 4 months without a scan.  I'm hesitant to go to my primary because I'm afraid he will write it off as no big deal and not do a scan. I have never had a headache last this long other than when the Yervoy caused aseptic menegitis right after I was diagnosed.  The headaches seem to be behind my eyes and pressure type feeling.. Ibuprofen and Tylenol barely touch it. Any advice on who I should contact? I'm at a loss at what to do. Any help is greatly appreciated.  

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Anonymous's picture
Anonymous
Replies 11
Last reply 11/2/2017 - 8:51pm
Replies by: Anonymous, Rami, MelanomaMike

I posted previously under the topic subungual melanoma and question about second opinions. I had a second opinion appt today after I didn’t feel comfortable with the first doctors exam and opinion. Today’s visit was much better, the doctor heard my concerns and agreed that we should do a biopsy to know for sure. She plans to completely remove my nail and then biopsy a bump that I have under the nail as well as down into the skin fold. In her notes she called it a DS3 for nail plate avulsuion with biopsy of the nail matrix. Not knowing anything about this just wondering if that sounds reasonable? Will she be able to make any assumptions based on what she sees during the biopsy?

My biggest issue right now is dealing with severe anxiety over this. I’m convinced it’s the worst and have felt so depressed all weekend. I couldn’t schedule the biopsy for another two weeks, I’m afraid my anxiety will push me over the edge during that time. I asked her today if she thought it was cancer and she said her gut said no but she’s been humbled in the past so it’s best to do a biopsy. I felt better initially after she said that but now I’m overanalyzing everything and just working myself up. 

 

Any comments on the biopsy or how to deal with the anxiety leading up to it are appreciated.

 

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Tessastar23's picture
Replies 3
Last reply 11/2/2017 - 8:27pm
Replies by: Anonymous, Tessastar23

Hey, I am new to MRF, and melanoma in general. I am not the one with melanoma. It would be my boyfriend or s.o.. Eight years ago I found a circular-ish spot on the top side of his buttcheeck. To keep his information private (his request) we can call him John Smith. I begged him to get the spot checked out by a doctor but he refused. John does not go to the doctors unless he feels like he's dying so it is nearly impossible for me to talk him into going... I kept an eye on the spot and did a thorough check of his entire body quite often after that, and not much changed over the years. Unfortunately, after 5 years we split up. We split up for almost 3 years. We recently just got back together. This man has my heart. I found more spots, bigger spots, darker spots and a few spots he didnt even know he had. I'm worried that it is cancer and I'm even more worried that it metastasized into different organs. And heres why I am so worried.

1) I do not know much about melanoma, but what I do know is that every picture that shows melanoma is exactly what his "spots" look like.
2) There is more than one now, more than 2, but possibly under 10.
3) There is a spot on his scalp, back of the neck, buttcheeck, and his leg.
4) Its been 8 years and he is still refusing to see a doctor. However, i am going to go to his father who is the only person that can get through to him.
5) We have 2 children under the age of 10.

I am currently reading and reading and reading. Can some one please help me to understand melanoma and how it works after it spreads?

Thanks all,

Call me star!

~love hard, Tessa~

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Jahendry12's picture
Replies 13
Last reply 11/2/2017 - 8:17pm
Replies by: Jahendry12, Mat, marta010, Anonymous, jetdoctor67, Mark_DC

I hope this evening finds you all well.  I frequently come to this site to check in on people, give encouragement where I can, and ask quesions as well. Let me just say I'm grateful for the people on this site and the knowledge that they share as well as the support they provide.

Here goes:  my husband has been stage IV since March 2012. We've been religious about follow ups, scans, etc.   1 nodule removed from lung in 2012, 1 nodule on hip disappeared after 4 months on keytruda in 2016, and then a 5 cm tumor in small intestine shrunk by taf/mek and then removed via surgery June 2017.  (Was on Taf/Mek for 3 months, then went off after surgery as there was no evidence of any disease at this point).  Follow up CTscheduled for Sept 30th.

In August of this year, he was in the hosptial for a week as a 10 cm tumor grew in his omentum.  It was pretty scary.  LDH, which had always been normal, sky-rocketed.  To shrink the tumor, he was put back on Taf/Mek, which has worked wonders. 

Here's the dilema - Taf/mek is only going to work for so long.  The next logical step in ipi/nivo, but when he was on Keytruda, he experienced mild colitis.  Doc is thinking that ipi/nivo may cause worse colitis.  Do we give the ipi/nivo a try and see what happens?  If not, what other options are available?

Thanks in advance for any opinons, experiences or advice.

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guynamedbilly's picture
Replies 9
Last reply 11/2/2017 - 4:46pm

In a classic case of overthinking, I'm having to decide to either move my injections back one day or one week because of the holidays.

Because of the sustained effects of immunotherapy, I'm more inclined to push it back a full week, so my overall treatment will end a week later.

What do you think? Is the difference even worth thinking about?

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MovingOn's picture
Replies 3
Last reply 11/2/2017 - 4:45pm
Replies by: Mat, TexMelanomex, MovingOn

I had my second Keytruda infusion this past Monday. On 8/24 my LDH was 160. 9/27 it was 139. 10/25 it is 266. 

Mom thinking this could mean that additional tumors are growing or it could mean that Keytruda is causing cell death (hopefully tumor cell death). My palpable tumors are definitely smaller but I’m not going to ‘count my chickens before they hatch.’

Jan‘17 Mel. 3B unknown primary. Neck dissection Feb’17 (tongue atrophy from surgery). Ipi Mar‘17-May’17(Hypophysitis), recurrence Sep’17(nodes behind ear&parotid). Pembro Oct‘17-

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JeffinSeattle's picture
Replies 4
Last reply 11/2/2017 - 2:57pm

Quick background: My wife had a .74mm deep melanoma removed from her lower back in Feb of 2015. This Feb, she noticed a lump in her groin area and it turned out to be melanoma. She had a CLND on May 4th. Two of the lymph nodes had melanoma in them, the elnlarged one and one other had traces.

Prior to surgery, the surgeon was concerned about a couple nodules that showed up in her lung and he suggested we try medicine first. Our medical oncologist thought surgery was the best way to go. He won and they did the CLND. In July, he rescanned the lung and it was clear, so his hunch was right!

She started Keytruda in Mid July. We just had the first scans this week; brain MRI and CT scan of pelvis/abdomen/chest. Brain was clear, but the Dr said he is worried about a nodule on the lung. It's 1.2cm X 1.8cm, in upper right lobe. My wife has had a wicked bad "cold" for the past two weeks (she's a teacher, she gets these things now and then). The Doctor said that there's a chance that the nodules are from an infection of some kind, but we'll do a needly biopsy next week.

If this thing is melanoma, it certainly grew pretty fast!

I'm assuming that she is one of the ones that doesn't respond to Keytruda.

He gave us three possible next steps if this thing in the lung is melanoma. He suggested against surgery.

1- Try another immunotherapy such as Ipi and Nivo.

2- Go to the BRAF cocktail of dab and tram

3- Enter a trial. The trial he suggested is one with Nivo and a compound called CB-839, a glucose inhibitor.

We're leaning towards the trial. The Doc really wants to keep the BRAF cocktail in our pocket for as long as we can.

Thoughts? How many of you have had lung mets? It will be helpful to hear some stories of success with dealing with these things.

We're hoping and praying that we don't have to go down this road just yet, but I'm also a planner, so trying to get the best info I can and be ready. We are in great hands with the folks at SCCA, we're so thankful to have them in our back yard!

Thank you all for sharing what you're going through. I know there is a village behind and with every single one of us.

Jeff

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Addie_C's picture
Replies 14
Last reply 11/1/2017 - 1:38pm

I'm new here and posted a week or so ago with no replies, I'm hoping that by opening up and posting more information I could get a bit of help.

My husband was just recently diagnosed with melanoma and we have found out that it's spread to his lungs. I'm having the worst time wrapping my head around the whole thing and I'm just so overwhelmed with the whole process. Has anyone been in a similar situation and have advice as to how to handle is and what treatment has or has not worked for you? I'm just so flabbergasted as to how it's got to be so seemingly bad without even knowing. 

Any and all advice or help is so welcome.

Addie Calhoun 

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Anonymous's picture
Replies 10
Last reply 11/1/2017 - 10:26am
Replies by: Anonymous, Threefitty, mrhudgens, MovingOn

I was just wondeirng if anyone would be able to share some tips with me about how they deal with any anxiety that they may feel regarding their melanoma diagnosis.

Five months ago I was dianosied with stage I melanoma. It was excised with clear margins during the first excision, but they went back anyway and did a WLE with 1cm margins just to be safe. The WLE also came back clear.

At the time, I was very happy and positive about the outlook going forward, but then I met with an oncologist who asked me if I had felt any tingling or weird feelings in my right groin (original lesion was on my right leg). At the time, I told him that I felt nothing abnormal in my join, but since then, I've noticed that I absolutely have pain and tingling in my groin (for a whie I thought I was just imaginging it, but now it's clear that something si going on with my groin), and now I've convinced myself that the melanoma has spread there and eventually is going to spread to my organs and put me at stage IV.

I met with the oncologist again a week ago and told him about my groin pain, and he assured me that he doesn't think there's anything to worry about. My right foot has been swollen since the WLE, and the doctor said it's due to damang to the lymphatic draining system during the WLE. I assume this would also cause the pain in my groin. He offered me the option of having an ultrasound to see what's going on with my groin, but he seemed adament that that wasn't necessary, so I took his advice didn't bother with the ultrasound. He ended up referring me to a social worker that he said can help with people dealing with these issues of constant worry and axienty about melanoma spreading (more evidence that the doctor seems convinced that this is all in my head).

Anyway, sorry for rambling, I was just wondering if anyone else is in, or has been in this situation and maybe could you share some advice on what you did to try to help cope with these feelings and get on with life.

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Anonymous's picture
Anonymous
Replies 6
Last reply 10/31/2017 - 10:29pm

Hey Warriors!

Tomorrow is tx #2 of the Keytruda/PV-10 combo and I'm feeling fired up about putting the hurt on this bastard. Full battle mode! I was thinking about doing the treatment #2 of Keytruda "live feed" again tomorrow but I'm not sure if anyone is interested in hearing about in that way or if it will really be any different than round 1.

If anyone wants me to do that I'd be happy to, otherwise I'll just post a synopsis in the next day or two. 

I hope you are all fighting the good fight and staying motivated to turn the tables. I feel like Houston is becoming my home away from home with the frequency of these trips (even if just for labs sometimes) but I am finding more things to explore and enjoy down here. For anyone who is traveling for their treatments I strongly encourage you to joining miles/points/clubs for hotels and airlines etc. My  next trip will be free for both airfare and lodging because of this. I would also encourage you to explore, try new restaurants, museums, points of interest, anything to get out of the hotel and enjoy some life! 

Time to get some rest before I take the fight to the enemy tomorrow. Sleep well warriors.

 

Tex

 

Tex

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