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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slh4448's picture
Replies 10
Last reply 8/25/2016 - 11:43pm

Hey everyone,

i know that there are several people who have been or are currently on Yervoy 10mg. I was just curious if you could share anything about the side effects and how long side effects lasted? I have my first infusion tomorrow morning.

Thanks all,

Stacy


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Bubbles's picture
Replies 14
Last reply 8/26/2016 - 10:02am

Hey Buddy,

Just wanted you to know I've been thinking about you (and I'm sure I'm not alone!!!)!  Sent you a message via email/MPIP...but clearly that doesn't work because I didn't even get the copy I sent myself.  Oh well....  Hope you and your holy head (that's what I call mine!!!) is healing well.  Hang in there!! love, c

PS ~ It may not seem like it just now....but there will come a day when you can have fun with this....though sometimes it will be at your own peril.  For instance, when I put an order incorrectly into the computer at work and nurses are confused, questioning, etc....I'm like, "Oops!  Sorry!  That's what happens when you have holes in your head!!!"  Of course, depending on the nurse, I may get a questioning look, a smirk, one who tries to knock another hole in it, or..."Oh, H#LL NO!!!! You're not playing that one, sister!!!"  Yeah, sympathy is not really one of the options!!!!  Love you!!!!  c

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/25/2016 - 10:26am
Replies by: Anonymous, SABKLYN

Hoping for some insight.  My husband just had his yearly skin cancer check and the dermatologist noticed a new faded circle with a red rash in the center on his mid back.  She is thinking either skin irritation or basal cell.  She recommended waiting 4 weeks to check again and if it does not improve will do a shave biopsy.  

Is waiting a month ok?  Are basal cells cancerous?  My husband has no history of skin cancer and a couple skin biposies over the past year have come back as mild to moderate atypica with clear margins.  Thanks for the help.

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Anonymous's picture
Replies 5
Last reply 8/24/2016 - 5:35pm

  Is it possible?! Sorry, i dont know how to link article. Saw it on sostrenews.com

Do not fear tomorrow, God is already there.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/23/2016 - 9:24pm
Replies by: Casitas1, VeraB

Hello all, 
Looking for some advice and support here. I have been undergoing immunotherapy treatment which has been decreased from a two drug therapy to a single drug therapy (Keytruda) but the side effects have been unbearable lately. I have been hospitalized with colitis about 2 months ago and then again with pancreatitis a few weeks ago. I am now home but check ups with the oncologist show a lipase level that is not decreasing. I have been taking corticosteroids at home as well as had an IV infusion today. In addition to my recent weight loss of 15 pounds, I have been extremely fatigued and find it difficult getting out of bed every morning. However, latest CT scans do show progress and benefits of the therapy. 
I am on a bland diet for the pancreatitis although I have had no appetite anyways.

Anybody else struggling with the adverse effects? Its becoming increasingly difficult fighting this battle and I'm looking for any advice or support I can get. 

Thank you! 
 

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/23/2016 - 9:46pm
Replies by: sister of patient

I noticed a dark brown almost black spot on the sole of my foot. I mentioned it to my pediatrist (who i was seeing for plantar fasciatis) and he told me not to worry about it...that it was just dried up blood. Well, last week the plantar fasciatis was becoming unbearable so I made and appt. so see a new podiatrist as the old one has since retired and the first question that he asked me upon examining my feet was was i aware of the spot on my foot? I told him what the my old podiatrist had said and he looked at me and said that it was not dried up blood. He then asked when was my last physical and he told me to make an appt with my primary care physician as his opinion was that i needed to have a biopsy to make sure it wasn't skin cancer. I immediately made an appt with my primary care doctor who agreed with the podiatrist. She had her office schedule an appt with a dermatologist/Mohs surgeon. My appt is this Friday. My doctor said that they are going to access the affected area and then perform a biopsy at this visit. I'm so scared. I have no idea what to think. I honestly don't think that I've had enough time digest what is going on. I haven't told friends or family....just my spouse because i don't want to make something out of nothing but I don't know what to think.

 

 

 

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Ally1986's picture
Replies 3
Last reply 8/23/2016 - 10:25pm

Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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Well, I finally decided to go to the doctor for a mole that I have had since I can remember but a couple of months ago. I noticed it looked odd but not terribly interesting. I put it out of my mind and realized it a month ago again. I think I had noticed it back in June and it is now August. Anyway it looked irrugular and atypical from the pics I have seen and showing three different colors but I think it's 5mm. So not very big. When I showed it to me doctor he said yes it looks strange and needs checked out. So I'm waiting for a derm. To call me back. Well a few months ago I had been having pain in my shoulder near the mole and they did an MRI on it and said I fractured my clavicle one of the hardest places to fracture near the ACJoint. My question is, could the wierd mole and fracture be related? They still haven given me a clear indictation in if it's a fracture. One doc says it is but another says it isnt. I just want it to stop hurting. Will keep you guys posted in what I find out. In the meantime I will try to stay calm. I have yet to inform my husband on this and fear that it could be cancer until I get a biopsy.

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/24/2016 - 2:36pm
Replies by: Anonymous, WithinMySkin

Wondering if anyone has ever had this operation done?  I have stage 4 melanoma and the main area of concern is area on right upper side of maxillary.  Has also spread into sinus cavity.  In a study now, but dr said goal was to shrink tumor enough to have this operation done.  From what I have researched, this procedure is horrifying!!  Any input would be helpful.  Thanks.

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Julie in SoCal's picture
Replies 6
Last reply 8/24/2016 - 11:45am

Dear Friends,

For the last year and a half or so, I've felt like I'm living with my toes over the edge of Stage 3c; one foot in and one foot out of stage 4.  I've had so many small possibly benign things pop up.  As of yesterday's scans, though I'm now both feet in stage 4 as a 13 x 19 mm hotspot was found in my left lung.  I also had another small intransit pop up.  So it seems Pembro is going the way of IPI, only working for so long and then slowly failing.

So what's the plan? The tumor is small, and doesn't seem to be rapidly growing so I have time to research and find a plan that I'm comfortable with. Also, surgery is an option.  The met is in a very resectable place and is not yet big.  Clinical trials are also an option. Rock Star doc has also given me 2 clinical trials to look at: one targeting NY-ESO-1 (ID-LV305-2013-1) and the other targeting JAC-1 (INCB39110-107).

My instincts (and past plan) has been to leave tumors where they are and attack them with something systematic.  My thinking was that once Mel has left the building and traveled all around my body via blood and lymph systems, only a systematic treatment will work.  And Surgery's always an option I can keep in my back pocket.  

So this is how it is.  Is anyone on the NY-ESO or JAC-1 trials?  Has anyone else failed IPI and PD-1 and joined a clinical trial? Which one did you do?  Looking for all advice and options.

I'm grateful for this community and for the support, knowledge and wisdom they share. Thanks, friends.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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PFritz's picture
Replies 6
Last reply 8/24/2016 - 10:59pm

I am a 35 year old mother of two boys and this year my world was rocked my on Spring Break when I received the news that I had Melanoma. It has been a whirlwind since April. I had a T1b due to thickness of .55, Clark III, no ulceration, and mitotic 2 on my left shoulder. I had a melanoma in situ on my left ear. I had two wide excisions and now confused on next steps. Also I am a type 1 diabetic on an insulin pump and a huge family history of cancer (brother passed away from lymphoma and my dad had an ocular melanoma).

After my two wide excisions in May (and multiple other moles removed while under that weren't melanoma just suspicious that dr wanted removed) I've had a few other dermatology follow ups which was just the watch and wait attitude. I'm not that kind of person given history so we are down at MD Anderson right now. Pathology here was completed and they changed me from a mitotic rate of 2 to 3, is this concerning because it freaked me out?! The dr had said it could be because each pathology looks at different slices and also because their pathology is so good at finding outliers.  In my original treatment the dr said no to a Sentinel Node Biopsy due to risk of surgery (was already going to be a 3 hour surgery and being a diabetic for healing) and he didn't see the benefit of it. At MD Anderson the dr said basically he can't do anything for me unless I have the Sentinel Node Biopsy so what are the thoughts on doing this well after the wide excision, with being 1b? Are there pros, cons, thoughts? We are just very confused with some may differing views on treatment and whether this mole or that mole should go in a jar.

Thanks!

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Anonymous's picture
Replies 1
Last reply 8/23/2016 - 6:52am
Replies by: debwray

Interesting final paragraph that could change how remote Dr visits work ... would you like a 2nd opinion from an electronic "trusted advisor" aka Watson? yes, that Watson the compouter that played Jeopardy...

https://www.statnews.com/2016/08/19/ibm-watson-cancer-asia/

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Mikers's picture
Replies 5
Last reply 8/24/2016 - 5:39pm
Replies by: MoiraM, Mikers, debwray

Hello!

I wonder which steroids did you use and how did you tapper them if you have had an endocrinopaty namely pituitary inflammation?

Did you suspend ipi and for how long?

Did you use antibiotics? 

How long did it take to resolve syptoms?

Did you make lumber puncture for proper diagnoses?

Thank you!

My Doc is not an expert in the field and I want to help him )

 

 

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Maureenk1's picture
Replies 3
Last reply 8/23/2016 - 6:29am
Replies by: debwray, Maureenk1

Hi!  I recently had surgery to remove a mole which was stage 2 ulcerated and 4.2mm thick behind my right knee.  I was referred to an oncologist who advised either Pegylated Interferon a-2b for 8 weeks or Interferon a-2b for 4 weeks.

So far I am not seeing the worth of either therapy based on a stage 2 diagnosis and the effects one can incurr.  Has anyone had these therapies for stage 2 melanoma?

If so how has the protacol impacted your daily life?

Thanks,

Maureen

 

 

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Anonymous's picture
Anonymous
Replies 0

Thermolysin is a thermostable neutral metalloproteinase enzyme produced by the Gram-positive bacteria Bacillus thermoproteolyticus. It requires one zinc ion for enzyme activity and four calcium ions for structural stability. Thermolysin specifically catalyzes the hydrolysis of peptide bonds containing hydrophobic amino acids. However thermolysin is also widely used for peptide bond formation through the reverse reaction of hydrolysis. Thermolysin is the most stable member of a family of metalloproteinases produced by various Bacillus species. These enzymes are also termed 'neutral' proteinases or thermolysin-like proteinases (TLPs).

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