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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happyfeet123's picture
Replies 8
Last reply 6/23/2018 - 11:39am
Replies by: BillB, happyfeet123

Hi Everyone:

i have been reading the posts for awhile but never posted.  The information and responses have been very helpful in navigating and understanding melanoma.  My question is.....My last two pet scans has shown metabolic activiy in the opposite leg (thigh) of my primary leg tumors. The energy it is taking up has doubled.  My oncologist does not think it is melanoma because it usually does not go from leg to leg.  She stated she is going to keep the treatment the same.  I am currently stage 4 and receiving keytruda  for about the last year.  I was ok with this in the beginning because it didn't matter if it was or not the treatment was going to be the same.  But after the second pet scan showed it was gettin bigger I started to change my thought process.  I would think you would want to confirm if it was or wasn't melanoma.  This way you would know you have developed other lesions while on keytruda.  You could wait until the next pet scan to see if keytruda took care of it or decided to cut it out. I would think if it was melanoma the sooner you cut it out the better.  Though have it deep in your intermuscular muscle could be a long recovery. If not melanoma, what could it possibly be?  If anyone has ever experienced this or has input I would greatly appreciate your replies.  

Thanks

Happyfeet

 

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Anonymous's picture
Anonymous
Replies 17
Last reply 6/22/2018 - 4:01pm

Hello, Im new here and I was wondering if anyone has worked while going through opdivo treatment, because I will be starting soon and would love to get back to work. I just finished 33 treatments of radiation so Im home at the moment. I will be doing every two weeks for a year.  The Dr told me to wait atleast a month to see how I feel and Im praying I can go back after that 1 month. 

Thank you 

Amanda

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/22/2018 - 3:15pm
Replies by: Janner, kcmtnbiker

Hello
I have had a mole on my wrist for years and over the past two months it looks like it's spreading. My GP wasn't too concerned but sent me to the dermatologist just in case. Upon looking at it he says it is most likely to be a dysplastic Nevi. I thought these were moles that appeared aytpically. Can normal moles change into atypical moles without being cancerous. As it is so small less than 1mm and in an easily viewable place not to remove it. However it was still spreading between first appointment and referral and so am worried it could be worse.
So can normal moles develop into atypical moles?

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Onto's picture
Replies 3
Last reply 6/22/2018 - 11:34am
Replies by: Anonymous, Onto, kcmtnbiker

I've got this mole since I can remember (I'm 22) and I noticed black top layer of mole has flaked off and under is raised very dark brown mole. Is it melanoma? Why the top layer flaked off?

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Anonymous's picture
Replies 6
Last reply 6/21/2018 - 10:54pm

I have a question would it be better to have my surgeon from ENT surgeon or a melanoma surgeon?? I am getting shuffled from 1 surgeon to next. We waiting time I want this out of me so I can start fighting!! Thanks

Susan Bette Hall

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tedtell1's picture
Replies 9
Last reply 6/21/2018 - 9:58pm

Friends;

As I haven't posted for a while, I thought I would share some great news. After having been diagnosed in February with stage IV, (secondary deep tumor on back spread through the blood) and a WLE repeated scans and treatment with NIVO I continue to show no sign of any further growth or tumors. My body wasn't really crazy about the NIVO and I have developed colitis after 4 months. Treatment with prednisone has spiked my blood sugars and created an insulin necessary diabetes. This condition seems to be very temporary as the blood sugar is fine until I take the prednisone. I believe this will resolve quickly when I taper of prednisone, which should start soon as it does not seem to be doing the trick and the doc is going to change tactics to another med. I still have the white spots on the back of my throat, ENT's don't really know what it is, and it has effected my voice/etc....but again something I will just have to live with. In reading everyone elses's stage IV stories I have to continuosly pause to think about how blessed I am with never having had mets in any other area! So going forward I have discontinued the NIVO as Dr. Dudek feels it has done what it was intended to do and the colitis should clear up eventually going off it. Thanks for all the support and love, this site has been hugely informative in my process of treatment and navigating. I pray for everyone daily and long for the same results for all of you. So for now, the beast has been kicked to the curb! I am planning on that being a permanent thing!

Blessings,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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MustangLT's picture
Replies 11
Last reply 6/21/2018 - 6:25pm

I started the clinical trial S1404 Randomized Comparing Ipilimumab 10mg to Pembrolizumab. I got randomized to the ipi arm of the study. I had my first infusion on June 19th. About 4 days later I started breaking out in an itchy rash, initially on my hands and abdomen. It got worse and I was put on a 5 day regimen of prednisolone. It stopped the itching until I went off, about 5 days later went back on another dose of pred for 5 days and my next treatment has been postponed.  I know itching and rash are not the end of the world but living with constant itching is very maddening and crazy making! The rash is now over my back, arms, scalp, arms..
I am now trying to decide if I should try another treatment and itch for another month or more or go back to watch and wait! Have also had touches of diarrhea but nothing overwhelming. I'm really on the fence right now, thinking I should give it another chance, then again, not crazy about the risk potential. I'm in very good health otherwise!

My original diagnosis was a malignant mole in the center of my back, removed 7 years ago. 2 years ago, left axillary node dissection with 2 positive nodes, this February, right side axillary node removal, 2 positive nodes. Currently NED which qualified me for the clinical trial.

Any thoughts?

Lauralea

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Coragirl's picture
Replies 5
Last reply 6/21/2018 - 5:10pm

Just wanted to wish all the Dads a relaxing, happy day. I hope you are all enjoying time with your families.

Amie Taylor

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MelanomaMike's picture
Replies 4
Last reply 6/21/2018 - 3:52pm

Hello MRF Family! I hope everyones doing ok & maintaining a positive attitude towards our mutual battle with this damn crap!
So, update, combo#2 finally is flowing through these veins of mine (June 18th) , a few weeks there it was postponed, 1st one due to irregular bowel movements (saftey precaution) 2nd time was due to my ACTH level being at 1.0.
So ya, finally back in the fight, im rearmed with weaponry (ipi & nivo) now im anxious to see what day 6 brings, as you remember, after my 1st bag of goodness i began the week & a half of pure hell starting at day 6 with the flu like feeling, and by day 8 or 9 my appetite was nowhere to be found (looked everywhere, even under the couch) pounding headaches (when i stooped down), nausea, dry heaves/vomiting, i couldnt eat for close to 7, 9 days! Then, as iv told you, Megace came into my life and after 2 or 3 teaspoon fulls i was instantly back on track! MEGACE IS GOD!
You guys, that was the worst experience so far in my life physicaly, & i just hope it doesnt happen again, im suspecting the corporate is Yervoy, hes the BUTT KICKER! Lol....
But anyhow, day 3 i feel just fine.Doing my wood working & keeping busy...
Ok guys, just checkin with ya's and ill write soon (hopefully NOT complaining) haha...
Love ya, Mike...

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Anonymous's picture
Replies 2
Last reply 6/21/2018 - 2:43pm
Replies by: jrtufo, BillB

I have already had a Wide excision and lymph node biopsy. They found it had metastasized in paratoid gland ,so need to have another surgery.,but my surgeon has refered me to another surgeon that specailizes in breast cancer and plastic surgery. I don't know what to do? Drive 3 hours to surgeon who specializes in melanoma or go to local plastic sur?? Please advise!! Thank you

Susan Bette Hall

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Riven's picture
Replies 12
Last reply 6/21/2018 - 11:52am

This whole journey has been happeneing rather quickly. My first appointment with my dermotoligst was May 14th, the removal of the primary was June 1st, and still with stitches in my back, I will be going to my first MRI and PET scans on Wednesday June 20th.

Im pretty nervous. I'm nervous that I might mess up the diet, and they wont beable to do the scan. I'm nervous that sitting in that room for 2+ hours will get to me. I don't know what to expect.

So I guess I'm just asking for any advice from the community for this newbie.

Thanks for any help in advance.

-Riven

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Susanlee528's picture
Replies 3
Last reply 6/20/2018 - 8:45pm

I don’t  know if I’m being paranoid or if I have a reason to worry, but right on the scar from my WLE, pretty close to my original site, I found what looks to be a bad mole. I can’t see it myself because it’s on my back so I only have a picture to look at. I’m trying to figure out how to post a picture here but I don’t know how. If I figure it out I would appreciate any input I can get. I’m calling the doctor first thing in the morning but in the meantime I’m going to be scared all night! Can this even happen only 4 months after surgery?  Wouldn’t being on Opdivo help?

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Sam33's picture
Replies 4
Last reply 6/20/2018 - 9:00am
Replies by: cancersnewnormal, Anonymous, DoubleTT

Hello everyone.

I was using combination (Yervoy & Opdivo- reverse dose) and I had my 3rd dose, a few days ago. I had bilateral lungs and 2 bone metastases. And i will have my petCT next week to understand the effectiveness of the combination. I am praying and hoping to have good results.

My oncologist in MDA told me to add Trametinib if there is a progression with the combination drugs, although I am NRAS positive. The local one thinks, there will be no benefit to add Trametinib. I am very confused. Has any NRAS patient used Trametinib and combination together? Does anyone know the sucess rate of Trametinib in NRAS patients? Any research, experiences or thoughts are welcomed.

Best,

Sam

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/19/2018 - 11:33pm

Hello! I’m thankful for the info I’ve gained from this board in the last six months. I had a melanoma stage 1a diagnosed at the end of last year. My thoughts are that it “flared” during pregnancy. I was sick with worry over it but am thankful it was only 1a. At the time of biopsy (shave) my doctor didn’t palpate my nodes and he didn’t at the WLE either which was performed by him in his office. Once he palpated them at my “first” skin check follow up I left his office and read about the role of lymph nodes. I became sick with worry as I had a lymph node swollen in my armpit on the same side as my melanoma during a good amount of my pregnancy. It has since gone down so I’ve talked myself out of my worry for the most part. But I wasn’t even aware of this connection because he never informed me and didn’t even perform it until six months after biopsy. I have since mentioned it and he wasn’t worried at all.

I also have three smaller moles that became super dark during pregnancy. They still are. There’s been no change after birth but they still concern me. They aren’t large but aren’t like the rest of my moles. I’ve pointed them out and he doesn’t seem worried. But he’s VERY laid back. In fact my original melanoma looked classic and he said as he shaved it “this isn’t melanoma.”

Should I switch doctors? Should I demand for more biopsies? It seems a lot of people with melanoma get them done all of the time and I haven’t had anything biopsied other than my primary.

 

I would love some suggestions and opinions. Thanks!

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