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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Anonymous's picture
Anonymous
Replies 13
Last reply 8/9/2015 - 1:59am

Hi everyone just been to see my consultant for my scan Resuilts from completing ippi. I have had a good response 50% in reduction in all my tumours liver lungs and lymph nodes, so pleased. Will have scan in 4 weeks again no activity in brain so well pleased today. I know I have a long way to go but having a drink tonight. Plus I have been eating and juicing for the last 4 months but not sure if this plays a part or not. 

Just wanted to share this 

thank you for all your support. X

scooby123

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DebbieH's picture
Replies 10
Last reply 8/9/2015 - 12:02am

I used to frequent this board several times a day, for years, but something happened and I wasn't able to log-in.  Long story short, I put in my old password tonight as a lark and here I am.  I don't see many names that I recognize (hi Janner!) but for those who might remember me, I'm still doing fine nearly 14 years after stage 3C and interferon. 

I see some things never change and as I was scrolling I saw anonymous posts actually telling someone to fire her oncologist for suggesting interferon as she was about to start it.  Argh.  Yes, we know now it cannot cure melanoma.  We do know that in a small subset of people it can delay recurrence and what is wrong with that?  For me these extra 14 years have been wonderful.  It was NOT a wasted year.  Jeesh - let's not bash each other's treatment decisions.  It would be easier if we had better options that worked for a large number of patients but we aren't there yet.  We all do what we think is best for us.  It feels good to be back.  Good luck to us all.

DebbieH, stage 3C after interferon and no scans (yeah I'm really outside of the box - lol).

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akamo's picture
Replies 13
Last reply 8/8/2015 - 11:54pm
Replies by: akamo, stars, jvictoria, DianaD, Anonymous, Millykamp, Janner

Hi. My husband was just diagnosed with stage 1A melanoma, .33mm.  Dermatoligist scheduled him for wide excision and sentinel node biopsy. I have done a ton of research and everthing I have read recommends not to have the sentinel node biopsy surgery (.33 not in the guidelines). The biopsy of the melanoma came back with clean margins. Please can anyone help with this decision?

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Millykamp's picture
Replies 9
Last reply 8/8/2015 - 11:53am
Replies by: Anonymous, Janner, Linny, stars, Millykamp, Momofjake

Still learning a lot but still getting overwhelm.. I haven't seen the specialist yet.. So many questions.. 

 

I I do have a few that I am wondering.., who it being an early stage cancer. 

can body ache be part of the cancer? 

The area where the lymph node are located could it be tender at times to touch but not swollen? 

Can feeling tired all the time be part of it as well? 

 

I also want want to thank everyone for amazing support groups.  This place have really help me u durst and most and still learning 

Melissa 

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jahendry12's picture
Replies 2
Last reply 8/7/2015 - 8:34pm
Replies by: BrianP

Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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sweetiejs's picture
Replies 7
Last reply 8/7/2015 - 8:13pm

Stage 1 melanoma on arm. Original slice biopsy .45 mm....had surgery....doc removed 2 cm most places, and when the tissue biopsy came back, results showed 1.2 mm depth. Doc now wants to do a sentinel node biopsy, and reopen the incision to remove some more tissue in the couple places she did not get the full 2 cm.......general anesthesia...which i don't deal well with.....I don't believe in chemo or radiation treatments...i have seen far too many people suffer terribly for a little extra time at just being alive...this is not how i want to handle my life......so not sure if there is an upside to having this surgery done, and see several downsides....need to get the doc's opinion on the odds...which is a guess....want to make a reasonable and logical decision.....any thoughts out there?? 

bd111342

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shelbug66's picture
Replies 6
Last reply 8/7/2015 - 8:00pm

I know for most here, my news is very small potatoes, but I wanted to share, as I thought it would help those that are at a lower stage like me (Stage 1B) and worried about the future.  I was originally diagnosed in October of 2010.  Yesterday I went in for another 6 month checkup, and was given a NED and the ok to stretch my appts out to once a year.  A small victory, but one I am very grateful for.

 

My thoughts and prayers go out to all that continue to battle this horrible disease, and for those families and friends of loved ones lost.

 

Shelley

Just keep swimming...Just keep swimming!!!!

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evieg's picture
Replies 8
Last reply 8/7/2015 - 7:48pm

Hi

I read in a past post that Melanoma is radioresistant .... So chances are Whole Brain radiation is not very effective.... My husband just was told he has 24 tumors in his brain... Going to start on Monday.

If you have any thought or input... It would be greatly appreciated.

God Bless all of you.

Evie

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liberty04281's picture
Replies 5
Last reply 8/7/2015 - 2:52pm
Replies by: liberty04281, Scooby123

After I finished Yervoy treatment, my scan showed that most of my nodules in my lung shrank, but not totally. Two months after I had a scan, saw my oncologist. He said scan is stable, good news. Nothing new showed up, and nothing grew bigger,looks the same as last time. I was hoping
I wiill.be NED this time, but I am stable.I was a little.disappointed,but anyway I should be happy that it is stable.
What is opinion of you guys on the board who had treatment with Yervoy?
Thanks,
Liberty

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Christine.P's picture
Replies 11
Last reply 8/7/2015 - 11:25am
Replies by: Christine.P, _Paul_, mrsaxde, Julie in SoCal, dfeng, stars, ldub, Anonymous

I have a large melanoma on my right calf about 2 inches above my ankle and the excision will need to be about 3x3 inches with margins. My surgical oncologist anticipates a skin graft and I really nervous about the healing process. I believe it will be a split level graft because the graft will come from my thigh.

While I don't want anyone to sugar coat anything, if you just have horror stories that aren't typical, please don't share them; I'm already scared.  (Not that anyone would intentionally scare another cancer patient; I am just easily upset and quite queasy about these things....)

I guess I want to know about healing time, pain levels, post-surgery care of both the donor site and graft site.  

Thanks for your help and advice.

 

Christine P. 

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JoshF's picture
Replies 8
Last reply 8/7/2015 - 10:27am

Well PET last week showed NED. I was a bit nervous because she said abdomen was bright but she felt it was contrasting and wanted to wait on offical radiologist reading. Though she was comfortable with results; I wasn't until I received official word. I've been very fortunate and grateful to my docs and the support I've received here.

We discussed scanning and for those of you familiar with my story, I had the local recurrence this past Jan after doing IPI & IL-2 Combo in Jan 2014. I didn't have clear margins prior to starting treatment and they felt then that I may possibly need surgery after treatment due to perfusion(?). Regardless I had the 3rd recurrence which basically would put me at only 6 months NED now. My onc feels that we can push out scan to 6 months as she has concerns about all the readiation I've been exposed since the fall of 2013. I know many of you have been through more....I'm just very conflicted I what direction to go here. I like the scans to know what's going on...really I guess you like them when they come back NED. There is a tremendous amount of scanxiety a few weeks prior to scan. I guess I just want to give myself the best chance to stay ahead of it because after 3 recurrences I can't stop thinking of if it comes back...I always think like when it comes back. It's hard to balance all of this and if anyone has suggestions...I'm always open to hearing them.

Wishing you all the best!

Josh

Let's work for better treatments....for a cure!!!!

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mrsaxde's picture
Replies 6
Last reply 8/7/2015 - 9:19am

Last winter I did the course of Yervoy (ipilimumab) and got what my oncologist classified as "mixed results." It seemed to stop the growth of a small spot on my lung, which was still unchanged as of my last scan in May. It also seemed to stop, or slow the growth of several skin lesions near the original tumor site. But new, small skin lesions continued to appear, and my doctor decided it was time to try Keytruda.

I had one dose of Keytruda so far, two weeks ago. Every day when I shower, I reach around and inspect the lesions on my back. This morning I notices that one lesion, about the size and shape of a pencil eraser, felt much less raised. In fact, I had a hard time finding it at all at first.

I'm trying not to get too optimistic, so as to avoid a possible letdown later. But does Keytruda work that fast that I could be getting results from it after just one treatment? I also think the Yervoy is still working. I have a slight rash on my sternum, and on my back, that comes and goes. Maybe the combination of the two?

Has anyone experienced rapid results from Keytruda?

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Millykamp's picture
Replies 23
Last reply 8/7/2015 - 5:58am
Replies by: Millykamp, stars, jvictoria, Mrs.GL, DianaD, Anonymous, dfeng, JoshF

I have been having mixed emotions the last few days.. I try talking to people,about it but I don't want them to think I am one of those people that is overreacting on something that is nothing. I lost my dad to cancer when he was 38, pretty much lost half of my dad side of the family to cancer.    Now that I am 37 and found out I have melanoma the past few weeks has been nothing but biopsy, and more yet to come.  along with upcoming wide excision and SLNB.   I know my cancer is nothing to worry about.  But it's always on my mind.. I guess I am scare of not knowing what to expect.       I am just curios.... Do people ,ever get those days where you just wanna have a big hug and just cry???

 

i am so glad I found this site and glad to see people' from around the world just come together and support one and another .    Thank you!!! 

Melissa 

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Just wanted to take a moment and ask everyone to say a prayer for T Jerry. I recently heard he is not doing well. He has been a great support, friend and wealth of knowledge to many. 

 

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