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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Thandster's picture
Replies 13
Last reply 8/31/2015 - 11:10am
Replies by: casagrayson, SarahA, MattF, Thandster, pookerpb, Bubbles, Anonymous

I'm taking Nivolumab. I've had very slow yet steady progress. Currently my liver is inflamed and my oncologist is talking about putting me on steroids Monday to reduce the swelling and take away the liver pain. I realize I should've asked her this question when I was there, but I just didn't. If she puts me on steroids, will she just write the prescription that I'll have filled locally? Or will this involve a hospital stay so they can be playing with the dosage and monitoring me closely?

just trying to make my plan for next week and don't know if I can plan one day for this or if I need to plan a little time in the hospital.

Any info is appreciated.

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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Replies by: Scooby123, dfeng

Morning all hope it's a good day for all. Can anyone give me an idea on if they have had tumors removed on liver lungs. I have 3 on liver 1 on each lung some mel in lymp. I have had ippi with 50 % reduction which probably would put my biggist tumor at about 1.5 cm is this possible  to remove. I see some have had tumors removed with ablation on liver . I am having another scan next week 4 weeks after first scan from finishing ippi . My consultant wanted to scan me at 4 weeks not sure why but he put in a request for keytruda if I did not respond to ippi but was not sure if I would get it. He has managed to get me the treatment but due to response with ippi he waiting to see scans again. He said he could not hold the drug for long so I guess he seeing if any change from last scan but only 4 weeks ago. 

Any thoughts 

regards

scooby

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/31/2015 - 9:27am
Replies by: Anonymous, stars, Linny

Hi

i have a red - light brownish streak on my thumb nail - it is towards left side, not from the cuticle but starts at the curved outer line of the White lunula which is not affected. It's been there for about 4 months I have white skin. Took a while to get dermatologist appointment - finally he said yesterday we need to watch it and to come back in 10 weeks, is he suspecting melanoma? If yes, then 10 weeks seems like a long time...Should I ask for biopsy earlier? He said it was longitudinal something I sadly forgot the exact name. I feel very worried! 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/30/2015 - 7:53pm
Replies by: Fen

My husband just finished 3 weeks of Whole Brain Radiation... When we first found out about his more than 20 brain tumors the Dr said, "This is a serious situation, I am suggesting WBR and when you are finished we need to be very aggressive and do Biochemotherapy ... We have run out of treatments so I am afraid it is the Biochemo or hospice" ... We were devastated!

now that the radiation is over... Whole game plan is different, because my husband looks and feels ok????..."let's  do CT  scans first of the neck to pelvis and see if you are stable Everywhere else".... Unbelievable!

For three weeks my husband has been so down and depressed because of our prior conversation....We are so confused.... to go from Biochemo or hospice.... to let's see where we are at.... Do not know how to feel about this...,do not get me wrong, my husband is happy no Biochemo..for now, but just so confused.. 

Anyone have any input on WBR and response rates?

 

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BrianP's picture
Replies 11
Last reply 9/1/2015 - 8:27pm

So this discussion hasn't come up in a while.  Do side effects have any correlation with overall survival?  This abstract says it doesn't.  Also states that taking corticosteriods don't have an impact on overall survival.  Would be interesting to see the whole article.

 

http://jco.ascopubs.org/content/early/2015/08/11/JCO.2015.60.8448

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So this discussion hasn't come up in a while.  Do side effects have any correlation with overall survival?  This abstract says it doesn't.  Also states that taking corticosteriods don't have an impact on overall survival.  Would be interesting to see the whole article.

 

http://jco.ascopubs.org/content/early/2015/08/11/JCO.2015.60.8448

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momof4boys's picture
Replies 2
Last reply 8/28/2015 - 10:42pm

My scan last Thur showed 2 spots on my lungs and my lymph nodes were enlarged. Yesterday I had a brochoscopy to biospy the lymph nodes and preliminary results are saying negative for melanoma. I was wondering if anyone here has ever had histoplasmosis. I think this is what may be going on. Any insight would be appreciated. Thanks, Rachel

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mrsaxde's picture
Replies 4
Last reply 8/28/2015 - 9:55am

I saw my oncologist today, for a follow-up after the second dose of Keytruda that I received two weeks ago.

Dr. Melnyk, my new oncologist at the Tunnell Cancer Center here in Delaware, became my oncologist because Dr. Asif moved to Howard County Maryland. Her background includes work in melanoma research, so I made it clear that I wanted her to take over, rather than Dr. Asif's replacement, who I understand is a freshly minted MD. Nothing against that, per se, but I like the idea of someone who has been actively involved in melanoma research watching over me.

I mention all of that because today was only the second time that Dr. Melnyk has seen me. I was still under the care of Dr. Asif until after my first dose of Keytruda, and Dr. Melnyk had not seen the spots on my back before I started with Keytruda. She first saw them two weeks after my first infusion, when I had already noticed that they had begun to change, for the better.

Today she told me that I was responding well to the Keytruda, and, that it appeared to her that the spots on my back were no bigger than they were three weeks ago. In fact, she said they might be a little smaller. I know for a fact that they are not nearly as raised and thick as they were, but she never saw them at that point.

Now it's on to my next infusion next Thursday, and a CT scan a week or two after that. Hopefully the lesions in my lung are having the same response that my skin is having.

Before she left the room today, Dr. Melnyk told me something I already knew, which was that they are seeing strong, long lasting responses to Keytruda. But then she said something that no one else has said to me yet.

"We just might be able to rid you of this."

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AJHP's picture
Replies 13
Last reply 8/29/2015 - 3:57am
Replies by: dl2z12, stars, AJHP, ET-SF, Anonymous, CHRISNYC, CHD, Elliemae216

Hello! I am 25 years old and was just diagnosed with Stage 1A melanoma on my back 3 days ago. I am a little freaked out to say the least. I have fair skin, blonde hair, freckles, and a ton of moles so it has always been in the back of my mind that if skin cancer were to find anyone, it would find me. Luckily this gut feeling brought me to the dermatologist to get checked over- and ta-da! melanoma. My dermatologist made me an appointment to see a melanoma specialist surgeon this coming week. He will do the excision and then also maybe a lymph node biopsy? My derm said this would be up to the surgeon if he thinks i should get the biopsy or not. I am a stage 1A, and the tumor is .56 mm. No mitosis or any of that stuff, so I think I am on the luckier side of the melanoma spectrum.

I have some questions for anyone that can help! 1.) who has had a lymph node biopsy and can you tell me how that went for you? and 2.) Has anyone here had the same stage as me that has had more melanoma reoccur later in ther life? That is probably my biggest concern as of now, since I have a ton of moles and will now be paranoid of each one of them. I know I will be going to the derm every 3 months for a while to check everything. But I am worried I might have melanoma somewhere else on my body right now and might not even know it? Which brings me to another question, has anyone ever had more than one melanoma found at once on their body? Sorry for all the questions, I don't know very much about this cancer and am scared :(

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ET-SF's picture
Replies 10
Last reply 9/17/2015 - 10:25am

Hi all,

Good news!  The path reports have come back, and it appears ET dodged a bullet for now.  Her SLN biopsy came back negative, and the WAE margins were confirmed clean.  We still haven't gotten to the PET/CT full body scan, which has to be ordered up by an oncologist.  We don't even have an oncologist yet, but we're trying to set up wit the ONLY melanoma specialist/program/clinic on our insurance plan.  Meanwhile, we're wrapping our heads around some big questions.  Among these....

INTERFERON THERAPY!  Considering the size of the tumor (Breslow 9mm) and other findings of the initial path (microsatellitosis, lymphatic invasion, perineural invasion), I think ET would qualify.  There's also a Phase III clinical trial for a multi-antigen vaccine, but I can't find info as to its efficacy so far, and ET could end up in the control group, getting nothing.  Interferon would be something she'd be guaranteed to receive, with limited improvement of her odds.  My question to all of you who have undergone this therapy is...

Would you do it again?

Or would you take a stab at the vaccine trial, knowing that you might end up in the control group?

(I believe it's either/or, as interferon would disqualify a person for the vaccine trial.)

Thanks for any input/insight you can offer!

SF and ET

 

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CHRISNYC's picture
Replies 1
Last reply 8/27/2015 - 2:06am
Replies by: kylez

I was considering relocating to another state.  however I'm on study treatment  ipi/nivo and it looks like it will be on going. For as long as it works...   That being said has anyone been able to transfer treatment.  My doctor said I'm not going anywhere but I would like to explore possible alternatives.  Thanks all 

Chris. 

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Anonymous's picture
Replies 4
Last reply 8/29/2015 - 11:02am

I have a friend who just got diagnosed. They are being worked up in the next few weeks - scans, lymph node biopsies, etc. Stage is currently unknown. They are anxious and scared and the work up is over the next couple of weeks. They are tired of being looked at "as a cancer patient". I want to do something for them without overwhelming them with this new diagnosis. Any advice would be appreciated from anyone that has melanoma and could tell me what it was like being diagnosed and what I can do to help. Thank you. 

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Anonymous's picture
Replies 1
Last reply 8/27/2015 - 10:11am
Replies by: ET-SF

I have a friend who just got diagnosed. They are being worked up in the next few weeks - scans, lymph node biopsies, etc. Stage is currently unknown. They are anxious and scared and the work up is over the next couple of weeks. They are tired of being looked at "as a cancer patient". I want to do something for them without overwhelming them with this new diagnosis. Any advice would be appreciated from anyone that has melanoma and could tell me what it was like being diagnosed and what I can do to help. Thank you. 

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