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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mary1233's picture
Replies 1
Last reply 9/18/2017 - 9:26pm
Replies by: Toby0987

I almost feel like I have no right to complain. I am almost five years post surgery and my physician suggested that I can discontinue the followup scans. I am terrified. The scans provide me assurance that I will catch any recurrence in time to take advantage of the advances in treatment and, at least, provide me with the chance to fight a recurrence successfully. If I have no idea that the cancer has returned how do I fight it?

How do others of you deal with this?

Thanks.

Mary

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Jewel's picture
Replies 5
Last reply 9/18/2017 - 4:09pm
Replies by: JuTMSY4, Anonymous, Jewel, Bubbles

You always expect the ball to drop when you have stage 4 melanoma. My husband did Yervoy 11/14 to 2/15 and since then has remained melanoma free. You start to breathe easier, and your first thought isn't cancer. On his last scan Dr noted a mass in his bladder...we just found out he now has Stage 1 bladder cancer. I know they say that life will only give you what you can handle, but now I'm just crushed. I can sense my husband is depressed and I just hope we can both snap out of this funk. We are both fighters and I know we will face this like we face melanoma....in it to win it....but boy this is tough. Thanks for listening.

Jewel

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/18/2017 - 4:06pm
Replies by: JuTMSY4, Anonymous

I'm stage four and have been on anti-pd-1 for about a year now with quite abut of success. My last scan, about 3 months ago, showed steatosis (fatty liver) on my scans, although liver function tests were normal. Has anyone here had this problem? When, if ever, is it grounds for discontinuing therapy?

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Scooby123's picture
Replies 6
Last reply 9/18/2017 - 10:40am

Hi Guys before I started keydruda my thyroid was low not on treatment at that stage. We was watching it to see if it would change. So I have now had 2  doses of keydruda my thyroid still down so looks like after next dose if still no change will go on medication for it. 

 

It is hard for me has after ippi I went in to the meanapause so my hormones are all over the place. 

Anyone with experience in low thyroid and on treatment. Do they stop treatment if it is low till it gets to a normal level. Or do you carry on if feel ok,, I do not have any symtoms with my thyroid at moment. 

 

Regards

scooby❤️

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Dwilkinson's picture
Replies 4
Last reply 9/18/2017 - 4:19am

I had a wide excision on 8/28 for probable Melanoma and my path results are taking forever to come back. I took it upon myself to call the pathology department on Thursday and they told me my sample went to Mayo Clinic. 

I called Mayo Friday and they told me my sample is getting cytogenetic testing done and a melanoma FISH. I did google both those tests but I'm still confused. 

Has anyone had a similar situation?

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williez's picture
Replies 6
Last reply 9/18/2017 - 1:19am
Replies by: Anonymous, dmarie, jahendry12, sgreenberg

Hello all, my name is Guillermo and live in Argentina.

I am Stage IV and I am taking Dabrafenib and Trametinib after failing Ipilimumab and Pembrolizumab (after 22 dosis)

Is someone in the group on dabrafenib and trametinib

Thank you for you attention,

Guillermo

Willie

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Sharon93065's picture
Replies 3
Last reply 9/17/2017 - 11:58am

I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

 

 

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I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

 

 

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I had Dermatologist visit  yesterday.  Followup from several months ago when i went to get a topical steroid cream for the rashes/hives I was getting.  I had taken a photo of my naked chubby body that showed how my entire side i slept in was broke out.  I would wake up at 1:30am totally covered in hives on the side of my body that my slept on.  My nightgown was 60%cotton, 40% polyester.  I went thru a period where the elastic in my underwear, anything not pure cotton when make me break out, mostly in the middle of the night.  So he gave me the diagnosis of pressure urticaria hives. I  Ihad other rashes also.  Thanks for the advise from others in this forum i was using Aveena cream for ezcema which has colodial oatmeal in it, aloe vera, you name it I was using it.  My scalp itched terribly.  I started with a benadryl, which knocked me out, then went to allegra, which was my salvation.  If i forgot to take one in the am, watch  out at 1:30am.  Trouble is, it was a 24 hr dosage and i think that was not good fo rmy liver.  So i bought the 12 hour. But haven't been able to try it out yet. My liver panel numbers went way up and i didn't get to have my 4th Opdivo/Yervoy and i cannot get the Opdivo Maintenance until that improves. I have drug induced Hepatitis D.  It was improving then started to rise again so i am now back up to 100mg a day of Prednisone and of course NO RASHES and can wear all the polyester and elastic I want, no itching.  Monday i go in to see what the latest Petscan that i just had shows.  I am nervous.  I am so tired all the time, insomia, and  just don't feel good. It also looks like i have white spots on the back of my hand Vitaligo.  I was upset when I first saw it.  Someone else on the forum said his oncologist said that means the immunotherapy was working.  My dermatologist agreed and explained how the treatment was working on melanin on our skin, I can't remember everything he said.  

Question please.  How long does the Opdivo/Yervoy keep working in our bodies until we can get he Opdivo Maintenance and Target Therapy?  

 

 

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mrsaxde's picture
Replies 2
Last reply 9/15/2017 - 2:27pm
Replies by: mrsaxde, BrianP

Hello everyone!

I haven't had anything to say about the anti-LAG-3 (BMS986016)/Opdivo combo trial I'm in since my last scan in mid-August, because there really wasn't anything to say. But I wanted to give everyone an update.

After the last two infusions, the most recent one this past Tuesday (9/12), I have noticed a significant increase in my level of fatigue. It doesn't last too long -- 2-3 days so far -- but it has been pretty heavy duty, to the point of my just having to go to bed and sleep for up to 11-12 hours. But that's only for one day, then my sleep habits have pretty much returned to normal. I suppose some of that fatigue could also stem from the 2+ hour trip each way to and from Johns Hopkins, although I can't say I noticed it after the first 2 or 3 infusions.

Other than the fatigue, I was extremely itchy and a little broken out on my upper chest and lower legs after my infusion on August 29. But that also quickly passed and I haven't noticed it as much this time.

I would have liked to have heard that my lesions had shrunk when I had my first scan last month, but they had only gotten slightly larger, and actually one of the target lesions had remained the same size. Dr. Sharfman seems satisfied with how things are going so far, so who am I to think otherwise? :-)

My next scan is on October 6 (a CT scan to help celebrate my birthday the next day! Woo Hoo!!). I'll be back with info about how that went after I hear the results.

-Bill

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JennerFromIowa's picture
Replies 6
Last reply 9/15/2017 - 2:02pm

Hi Everyone,

Haven't posted for quite awhile.  Hope all are doing well with NED or fighting strong.  This week is my 15 year anniversary with NED.  I am so grateful to all the people on this board who generously share their experiences and knowledge.  Don't know what I would have done without you.  Cheers to all and a rum and coke in memory of Kim from Iowa.  Still think of her and sorry we didn't get to meet in person.  Stay well all and fight the beast with all you've got.  Peace and love, Jenner

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thinkingofu's picture
Replies 2
Last reply 9/15/2017 - 12:51pm

Hello everyone

Hope this message finds you well

Thank you for your support and kind words. For both me and my mom. 

So, she had her brain CT scan and it seems that her mets have slightly increased in size (a couple of mm each) . She had her first yervoy+opdivo infusion around almost 2 weeks ago. 

I have read here that mets increase before they go down on the abovementioned combo. Is this correct? Is this what happen in your experience? 

Thank you again xxx

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nameisIce's picture
Replies 9
Last reply 9/15/2017 - 12:12pm

In march 2017 I noticed a huge mole brownish a lil smooth not to rough , doesn't flake if I don't scratch not itchy but I just choose to scratch for my concerns . I went back to my September 2016 pictures and I realized I had three small moles before it turned huge. Around May I've been sick like Breathing problems and pain etc. same thing for August 2017 . But the symptoms are gone. I went for a normal check up in June 2017 with a dermatologist and she told me "it could be just a normal mole nothing to dangerous" Right after I told her my concerns , at the time I was unaware of melanoma . But I need to is my Mole not concerning or should I really get a new dermatologist for a Biospy ?

i don't know how to link in pictures so copy and paste the link ?

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/15/2017 - 8:17am
Replies by: Shelby - MRF, Janner, Anonymous, cancersnewnormal

Hello,

I'm new here and have not been diagnosed with melanoma. I do have a family history of it though and one family member who died from it. 

In the past few months I have noticed a few old moles starting to look strange, and also new ones popping up all over. I also had a wart on my hand that was removed with cryotherapy that is now becoming irritated.

I am very concerned that the dermatologists I've seen will not have me sent to get a biopsy. I had one mole that was bleeding awhile back that now looks like it's changed shape and color. I have another that used to be flat that has become raised, and appeared to be "breaking down", some pieces of it came off. In the middle it looks like the pigment is gone and it's just normal skin. Now it's taken on a shiny appearance. I have tons of moles, most of them normal looking but also several that look odd. I had a burning red spot on my arm last week that turned into a little brown mole. I've got a large raised one on my face that has gotten bigger and looks a bit red around the edges. 

I am an English teacher in Japan (but am American). I am starting to feel that they are a bit behind the times here. Other family members have had several biopsies back in the states, for marks that looked pretty small and not to concerning. My grandma has had several lesions removed for basal and squamous cell carcinoma that just looked like little dots on her skin. However I've had 3 dermatologists here tell me that my moles are nothing to worry about because they are small and don't look weird enough. I also mentioned my family history. Apparently the primary thing they look for here though is the size of the lesion. If it's not bigger than 7mm or a very strange color then they don't want to biopsy it. 

Maybe this is nothing, and maybe I'm crazy but I've honestly been feeling worried ever since that mole started to bleed. The doctors have looked at many of these with a dermascope but have instructed me to come back only for ones that are bigger than 7mm. What do I do? Keep going to more and more derms until someone will send me for a biopsy, or give up?

 

If this does turn out to be melanoma what do I do? I live abroad far from any family and have only Japanese health insurance. I don't have insurance back home, I don't have savings, and neither does anyone in my family. 

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braunerk's picture
Replies 5
Last reply 9/15/2017 - 6:28am
Replies by: Anonymous, Bubbles, Ed Williams

Is anyone in a clinical trial with ImPrime PGG and Keytruda. I have run out of options except for clinical trials. A little history 2007 melanoma first diagnosed 2A 2013 subcut mass now 3B 2014 stage 4 with masses in pelvic and groin lung masses in 2015 and liver masses 2015. I have tried ippi keytruda tvec and braf dugs (mek and taflinar jst got my scans back and I have a new liver tumor about 1 inch across.

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