MPIP: Melanoma Patients Information Page

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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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jennifer83's picture
Replies 3
Last reply 11/11/2019 - 8:43pm

Hello all,

I posted a few weeks ago after my diagnosis of stage IV metastatic melanoma. I am so appreciative of everyone's support and kind words. I was diagnosed October 29th, but was not able to get an initial appointment at MD Anderson until 11/14 - the waiting has been grueling. I have been finding more lumps on my body as the days march on.. a total of eight lumps that I have discovered so far: neck, scalp, middle of back, middle of stomach, left front hip, left back hip, groin, mid inner thigh. Today I woke up and felt in the shower that the one in my groin seemed significantly larger to the feel, and when I looked, it was terribly bruised and tender. Deep purple/blue/black bruise spanning a few inches. I have no one at MD Anderson to talk to about this as of yet, and we wondering if anyone has experienced anything like it? Many thanks.

Jennifer

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mrhubahuba's picture
Replies 1
Last reply 11/11/2019 - 5:47pm
Replies by: Bubbles

After 3 1/2 weeks on braftovi/Mektovi combo I have developed grade 3 hives on 80% of my body. It drives me crazy with the urge to itch and comes in waves, worse at night. Other than that no other side effects though. I informed Doctor and he immediately took my off the meds until hives go away. That was 5 days ago and still have hives. I apply steroid cream and take Prednisone and anti itch medication. Hopefully this goes away quick so I can get back on meds, perhaps lower dosage? Very disappointed after such excellent results.
Wondering what plan b would be if I can't take the braf/Mek combo again.
Cheers
John

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MelanomaMike's picture
Replies 7
Last reply 11/11/2019 - 5:06pm

Here i am haha, sorry for my MIA bout, not sure if i mentioned in my very last post this new stuff seemed to cause a "depression" type feeling, and we know, when we take immunal, chemo, monoclonal etc therapies, it can mess up our brain chemistry not always our glands and or organs. But, now whats a trip is, i just did infusion #2 of my INCMGA00012 Tuesday (Nov 5th) and i swear to God it seemed to have knocked out whatever it was that i was affected by, plus, im about 2 weeks in taking my Iron pills (65mg) which i take every other day so i dont get "backed up", not ideal when i already have a tumor in my Sigmoid messin with my bowels to began with! Just for precaution and my coordinator Nan agrees, everyother day is perfect.
Monday i go in for another biopsy to the same tumor, the one on my side, now remember, iv already had it biopsied only to come back dead (Nectrotic) no Mel cells where found, both my Clinical trial coordinators think its odd for my doc Dr. Hamid to allow yet another biopsy to it, im sure he has his reasons and a trick up his sleeve! I want it out though! Hopefully afterwards we can, we did talk about it but have to do the biopsy again then we will, quality of life purposes! It hurts! I havnt slept on my left side now for almost what, 6 months!... ill do my CT Scan Nov 29th, im anxious as well as you all to see the results!! Incmga00012 & Epacadostat could very well be the next BIG thing for us!! Like i said before, alow me to test it first, smooth out the wrinkles a bit, then will get it FDA approved! Im so glad i feel better, did i mention i had a grade 2 rash? "Acneform" is what it resembled, no itch thank God, and its gone now without any treatment or set backs...i love you guys, and hope you all are stable... gunna browse a bit, im hangin in there guys, i cant wait for my next scan to see whats up!!

Melanoma Will Not Beat Me or my MRF Family! www.wespark.org www.covvha.net

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Hi peeps,
Thought I would share what’s been going on with my mom so far after her third infusion since everything she is experiencing is no where in the books of combo side effects and this post might help someone in the future looking for similar side effects
Her pain in the mid rib cage right above her stomach is still going on third week. She lost her appetite and can hardly keep anything down due to vomiting . She is so weak that she manages to get herself to the restroom. No diarrhea though. I am in the ER getting her morphine for the pain and zofran for vomiting . Her blood work is all normal. ER is just giving her zofran and sending us home. she has the little red spots all over her body and has been reported as bad case of gastritis and dehydration . I am not convinced.

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Hanaln's picture
Replies 10
Last reply 11/11/2019 - 4:48pm
Replies by: Bubbles, Coragirl, Hanaln, Anonymous, tedtell1, MelMel

Hi everyone! My husband goes in for his 2nd scans since his stage iv diagnosis in May. Luckily, nothing showed up on the scan the first time and we are certainly hoping for the same news in a few weeks. I’ve struggled with anxiety since his diagnosis, which came 8 months after our daughter was born and I dealt with postpartum anxiety and depression. I am on medication and see a therapist regularly but it doesn’t seem to be enough. I’ve been crying constantly with the fear of my husband dying and living without the love of my life. He is only 33 and we were supposed to have a long, healthy and happy life in front of us. I don’t know how to stop worrying about the worst case scenario and enjoy the moments. I try to think about how accidents happen everyday and nothing is promised. But it doesn’t help the fact that we are staring cancer in the eye, lurking over us like a dark cloud. I feel hopeless and don’t know how to keep going but I need to find a way to be strong for my husband and daughter. I’m crumbling inside. I could really use some encouragement from those of you who have been through this....thank you.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/11/2019 - 4:38pm
Replies by: Bubbles, gopher38
Anonymous's picture
Anonymous
Replies 2
Last reply 11/10/2019 - 10:33pm
Replies by: MelanomaMike, JudiAU

Hello, I am a 14 year old boy and I am afraid that I may be developing melanoma.
Last year, my mole seemed fine. But during the summer, I have been outdoors a lot and I can see it getting way darker and slightly bigger, a little larger than the width of the pencil. There is also some asymmetrical parts on the mole too. I will be removing it on the 26th of November. I don’t know how to add a picture right now but if you would know how to then I will gladly share one. Please ask questions and give your honest opinions and information. Thanks a lot, this means a lot to me.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/10/2019 - 7:59pm
Replies by: Cindy Lou

In 2007 I was diagnosed with Stage 1 Melanoma. Excision removed it. Clear margins. (27 yr old at time)
In 2011 I was diagnosed with a second Stage 1 Melanoma. Excision removed it Clear margins (32 yr old at time)
Also, I have had 3 more excisions of major dysplasia. I have lost count of the subsequent minor dysplastic Nevis, and shave biopsies I have undergone over this decade.
So in some since, I have become numb to these diagnoses. Also I recognize how early all these have been caught and easily treated, that it seems like I should not be worried. Plus now that I am nearly a decade removde, I would figure that the fear that the shoe will finally drop one day would dissipate.

However about every six months I am reminded of my predisposition towards melanoma--and the uncertainty of what to do.
When I got LASIK, the doctor noticed a mole in the back of my eyeball that has to be monitored but hasn't changed in 2 years.
When I was tested for Sleep Apnea, my doctor noticed a white mass in my throat.
The fact these "moles" are now literally in places I cannot personally monitor only heightens this worry..

Which brings me to this rational for this post on this weekend...
Saturday morning, I woke up to two swollen lymph nodes in my left armpit that have not gone away over these 48 hours.

How long should I wait before I reach out to my doctor? Likely it is some infection that my kids have brought home from school, but I have no other real symptoms (colds, fevers, etc.)

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sks2019's picture
Replies 2
Last reply 11/10/2019 - 3:11pm
Replies by: Affected, MelMel

My mom’s liver lesion grew from 1 cm to 4 cm and she is now in pain just below her ribs , She is not able to eat and starts complaining of pain even after eating a little . I am thinking it is due to the tumour growing , did anyone experience something similar ? Do liver lesions as big as 4 cm cause pain ?

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Pepperonifreckles's picture
Replies 4
Last reply 11/10/2019 - 12:34pm
Replies by: JudiAU, MelMel

Hello, i had a question concerning regrowth. Almost 3 years ago i went to a dermatologist to see if she could help me with my KP or chicken skin. I also have probably 50+ moles, fair skin, freckles and after we talked about treatment for my KP she did a skin check on me. She shave biopsied 2 moles that were suspicious to her and I eventually had to get a wide excision done to remove them because they were moderate dysplasia. After a few trips and a few more shave biopsies, she did one on my left deltoid region that was small, raised, and just dark brown. Looked very normal to me. The nurse called me back and said it was clark nevus and i didn't have to go back for just a checkup in 6 months. I noticed a few months the color started to reappear but it was flat, small and looked liked a freckle. Well life happened and I never did return for my routine skin checkups. Last week, my youngest daughter signed to be boo boo and pointed to my arm. When i looked, I realized that the freckle is now raised, larger, at least 2 differ colors, assymestric with irregular borders. I will be calling Monday to get in but was just wondering if this could be due to not getting all of the mole the first time or if any of you have experienced a previous mole removed that was ok but later returned as something not ok. Thanks for any comments.

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/9/2019 - 3:32am
Replies by: MelMel, Anonymous, JudiAU, Hukill

I spent alot of time on this site just wanted to post positive news because during my initial diagnosis I liked to read the positive stories. Im 4 years NED (diagnosed at 34yoa) stage 3b ulcerated melanoma to my back. Surgery wide excision with clnd armpit. I was given Yervoy 10mg 4 doses. God bless you all.

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alxvm's picture
Replies 5
Last reply 11/9/2019 - 3:26am

Hi, first of all, thank you very much for all the support you provide in this forum.

This will seem like an AA introduction. My name is Alex and I have a problem with hypochondria. I recently had a very large mole removed from my head by recommendation of a very good dermatologist. However, shortly after recovery, my family and friends prepared a mild intervention for me to stop worrying about unfounded fears of illness, and willingly ended up going to therapy.

Long story short: I was strongly suggested to ignore all my symptoms unless they signaled a clear emergency. Nevertheless, me being me, I couldn’t do anything but monitor the most prominent moles in my body after the mole removal surgery. I've found some changes in a mole that I have above the right inguinal region. However, everyone, including my therapist, keep telling me it's nothing and that if I go to the dermatologist, I've lost my battle against hypochondria.

Should this changes worry me? Any other suggestions from fellow hypochondriacs here?

If you are curious, the photos I've taken can be seen here:

http://imgbox.com/AK8WbdU4
http://imgbox.com/3TQ8U0ol
http://imgbox.com/BpAijJA7
http://imgbox.com/zZgqE17Z
http://imgbox.com/ycjUInWS

Thank you very much, for your time, attention, and feedback.

Warm regards,

-Alex

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fedupnurse67's picture
Replies 7
Last reply 11/9/2019 - 3:12am

Have had 2 rounds of the combo opdivo/yervoy, scheduled for #3 on Monday. Just wondering if my low TSH results could hold this up? Last 2 times it was tested it was ok, 1.5 and 1.8. Todays results are 0.05. Also will they treat this low level or will they just continue to monitor? Last round of the combo is scheduled for early December with Labs scheduled in the middle of December. Will start on opdivo alone at the end of December. Have been doing good on the combo so far, only major side effects has been itching and some nausea.

Donna

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