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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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
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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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 0

My husband has acral melanoma of toe nail that spread to pelvic and groin lymph nodes. Now with possible mets in the pancreas, liver, and spine. The pain in his abdomen has been intense especially when he eats or tries to eat.

He is getting relief with George's Aloe Vera drink. He still has the back pain, but the burping and stomach pain that radiated up into the chest and around to the back is gone. He drinks it prior to eating or when the burping returns.

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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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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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Hello, did anyone heard about this device that detects melanoma?

It would be nice if it is accurate! Does any expert has some more information about it?

 

Best!

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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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sgreenberg's picture
Replies 1
Last reply 11/26/2017 - 10:57am
Replies by: Calynda

Hi,

My wife has 9 brain mets, as of the last MRI. Keytruda and limited-dosage Taf/Mek have stopped progress for now, BUT one of the mets is causing weakness and pain in her left arm – making it hard to function.

Any thoughts as to how to manage the pain aspect? The anti-epileptic she's on (Lacosamide) isn't helping the pain, nor do over-the-counter pain relievers. We've got access to marijuana, but she’s hesitant to use this while at work. Physiotherapy? Massage or acupuncture?

Thanks for any help,

Steven

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Bubbles's picture
Replies 3
Last reply 10/31/2017 - 2:09pm

Both aspects to immunotherapy.....side effects and how they impact response....especially if treated with immunosuppressive drugs (prednisone, etc.)...are central to many of the questions I am sent by melanoma peeps and their families.  Today, I put up this post that covers a lot of ground...but begins to pick out the answers:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/do-melanoma-peeps-with-side-effects-to.html

I have done my best to decipher the data accurately and concisely.  But more importantly, as I conclude in the piece:

YES!!!  You CAN and SHOULD treat side effects to immunotherapy with prednisone if needed.

And.... "As ever, ain't noth'n simple in melanoma!  Hang in there ratties!!!" - celeste

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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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KMick's picture
Replies 5
Last reply 11/14/2017 - 10:50pm
Replies by: KMick, Momofjake, BrianP

Anyone heard news regarding Jake?  I think of him often and hope and pray for the best.

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/31/2017 - 11:54am
Replies by: Anonymous, KMick, MichelleRHG

I have had a growth for a few months get large somewhat quick. Started small and over 4 months got larger,  I whacked it playing a sport filled with dark bloodlike liquid, and clear fluid came out. Had it removed waiting for biopsy.  Derm did not seem to concerned, thought it was irritated cherry mole. however the quick growth and clear fluid were concerning, and I've read people are diagnosed without concern from doctor/derm. Anyone have experience with amelanotic nodular melanoma? Waiting for biopsy is steasful

 

Phtotos attached one is with dark liquid.. one is prior to biopsy after it broke.

https://ibb.co/kdsBT6
https://ibb.co/keL9Fm

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jetdoctor67's picture
Replies 5
Last reply 11/17/2017 - 4:06pm

Hello Everyone,

Well, I had my surgery for melanoma on my ear (.04 cm size and .66 mm deep) on the 25 Oct.  The actual surgery went well however I'm numb around the SNLB site (neck under left ear) which I'm guessing this is normal but I've lost some facial movement specifically the left side of my chin and mouth area.  My Doctor said he did not cut the main nerve but working around it may have put it into shock which is causing the numbness and loss of movement.  He also said I may regain all or some or none of the movement back but let's wait three months before we worry. 

My question is has anybody else experienced this?  Would love to hear your experiences.  Thanks and take care.

Terry

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