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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Dwilkinson's picture
Replies 2
Last reply 10/6/2017 - 11:38pm
Replies by: momof4boys

Has anyone seen Dr. Marr at UNMC before? I’m heading to her today for my first oncology appt. 

Wondering if anyone has opinions. Thanks!

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jennunicorn's picture
Replies 28
Last reply 10/6/2017 - 11:02pm

Thank you to everyone who helped me out on my last post. I just got a call from my onc. The tumor board reviewed my case and agree that surgery is a good option right now to get rid of this last stable stubborn armpit tumor. I will schedule a surgery consult next week and continue on with Nivo infusions for a while longer. But, now, I feel like I see a light at the end of this long tunnel and it is so nice!

I did ask her thoughts on adjuvant radiation, but she said while it may help keep that one area from recurring, it will also destroy all my good lymph nodes in there, and I'm a big fan of keeping as many lymph nodes as I can... as I sit here with double ear infections and a chest cold... I need all the fighting power in my body I can keep. And, if the mel wants to show up elsewhere down the line, radiation to one small area isn't going to do much anyway. So, surgery, little bit more Nivo, and hopefully I can have a more "normal" life for a while... whatever normal is anymore :)

Wishing everyone a good weekend and sending big hugs to anyone that needs one!

Jenn - stage IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Dave63's picture
Replies 10
Last reply 10/6/2017 - 10:57pm

I had a WLE to remove melanoma and plastic surgeon used dissolvable stitches under and on top of incision. This was 3 weeks ago.  The scar has started leaking a pink fluid and internal stitches are coming through. I pulled on what I thought was a scab and 2 inches of stitches came out. It seems like the surface healed up ok but it feels like there is a big hole under the skin. Is this normal?  I have never had this done but it seems like the stitches under the skin didn’t hold. I had BCC removed from my face on the same day and was stitched up the same way and it healed fine.

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Weaver1228's picture
Replies 3
Last reply 10/6/2017 - 10:16pm
Replies by: Anonymous, Weaver1228, Janner

*I will preface this post by saying I am a 34 year old female with a previous past of basal and squamous cell carcinoma. I am currently 17 weeks pregnant.

I have had an evolving dark spot on my left posterior shoulder for several months (6-8mo). It became pretty dark (almost black) and very raised. I decided I needed to have it looked at. I had my biopsy done on September 15th and it came back as a malignant melanoma with a depth of 1.20mm and Clark's level IV, both peripheral and deep margins positive as well.

I have been prepped and prepared for surgery to remove the tumor and preform the lymph node test this coming Tuesday. I met with the OBGYN team this afternoon to go over the protocol for the surgery in regards to my pregnancy. I feel as though I have been fairly calm throughout this process until I just received a call from the Pathologist who is working with my case who said he wants to get a second opinion because he is not sure it is melanoma now and that it could take WEEKS to get my results back so the surgery has been put on hold. My lab work has already been reviewed by two other dermopathologists and several oncologists who are all in agreement while the original diagnosis. Because the risk factor increases the further along I am into my pregnancy, I'm not sure where to go from here.

Has anyone had a malignant melanoma and then be told the diagnosis was wrong? Especially with a depth and Clark's level read such as mine? How prevalent are false positives with melanoma? I feel as though even if it does come back as negative I will likely have trust issues with my doctor for putting me through this stress. 

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Scooby123's picture
Replies 2
Last reply 10/6/2017 - 11:12am
Replies by: Scooby123, Bradley75

Hi guys, hope all well as can be.

had bloods today thyroid gone down even more from 0.4 to 1 so doctor called got to go on thyroxine medication.

 

on keydruda 4 round next Monday thyroid was going down before starting  keydruda but  do have family history of thyroid issues.

anyone on treatment for thyroid issues either from history of family or due to treatment how long does thyroxine start to work in your system . I believe he starting me on a low dose to start with.

i am going through menapause too so some of the symtoms I have been experienceing thought it was normal due to my age ect.

scooby❤️

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It's been years since I've been on this site, and I am grateful it's still here. 

Four or five years ago, my derm performed a shave biopsy of what turned out to be a benign lesion.  I've had lots of shave biopsies, so I know what they should look like after completely healed.  This one, though, has been red and scaly/scabby the past year. I have mentioned it to my subsequent derms and both have said, "It's a shave biopsy site from a benign lesion and sometimes they can look like that after healing."  None of my many other healed shave biopsy sites look/feel like this, nor have they changed in appearance.  Is there anything to worry about?  

Thank you!  

"May the odds be ever in your favor."

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AZSoCal's picture
Replies 4
Last reply 10/5/2017 - 3:40pm
Replies by: AZSoCal, ilikepralinen

Hi All,

I'm currently in week ~6 of a blind study getting either Nivo, Nivo + Ipi, or just Ipi.

My Creatine Kinase levels have started to increase significantly. I feel fine, but the doctors don't want me working out or doing too much strenuous activities.

I had to skip treatments last week when my levels approached 2000, but they were back down to the normal range 4-5 days later. I got another dose yesterday, and it shot back up over 400 a day later. There's a chance they'll need to take me off the meds entirely if it continues.

I'm trying to control it through my diet -- eating anti-inflametory foods, staying away from sugars / carbs, avoiding alchol, etc. 

Wanted to check to see...

...if anyone else experienced similar side effects?
...if so, how did it progress (or regress) over time?
...anything unique you found that helps control it (outside of diet)?
...and how common this is (as I didn't see CK levels mentioned very often in other posts)?

Thanks all!
Aaron

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Jdp17's picture
Replies 6
Last reply 10/5/2017 - 11:04am
Replies by: Jdp17, Anonymous, casagrayson, GrossieGal313

I was just currently diagnosed with Nodular Melanoma, at least a Clarks level IV. Breathless at 2.3mm To say the least I am nervous wreck.I am 34 years old and a healthy individual! I had this what looked like an ingrown hair spot on my leg that I watched for a while. Never grew different in size or color. I waited about 4 months then went in and resulted to this. The "unknown" is seriously driving me crazy with anxiety and panic. I have my first appointment in a week for my PET Scan and to meet with the Surgical Oncologist and Medical Oncologist. Looking for some positive vibes, what to expect ect.

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Sertan's picture
Replies 10
Last reply 10/5/2017 - 5:08am
Replies by: Anonymous, sgreenberg, obtu.bt, Sertan, Ed Williams, Bubbles

Hello i am Dr. Sertan, i am an ophtalmolog and sorry for my english.
My father stage 4 with 6 brain metastases.
2009 first skin lesion
2013 lung met surgical removal
2015 second lung met cyber knife
Braf mek inh since 2015
Now 6 brain tumors since last week
Loss of power on left leg
Started wbrt and will start nivo+ipi

Any chance of long term survival
Any other treatment recomendations

And everybody can write me about any eye problems

Very good forum lots of nice people

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Cooper's picture
Replies 3
Last reply 10/5/2017 - 5:05am
Replies by: Anonymous, Bubbles

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Bradley75's picture
Replies 7
Last reply 10/4/2017 - 12:51pm
Replies by: sister of patient, Anonymous, Bradley75, MovingOn

I had surgery in late July to remove a tumor near T-5 that was like 1mm away from my spine.  They removed the tumor and hit the area with a very high dose of radiation.  I felt really good for two weeks after surgery.  Once they hit me with 24 Gy of radiation in one shot, I have been a bit of a mess. 

Two weeks ago, I started having pain in my shoulder and back near the radiation site.  I was a bit concerned it might be a new met as every time I have pain it turns out to be a new met.  I was at my onc for my Keytruda infusion Tuesday and found out it is nerve pain.  They gave me Gabepentin and it helps a lot. 

I am curious if anyone else has had nerve pain issues like this?  My onc said the nerves could be waking up or regenerating and that this should resolve in time.  All I know is shooting nerve pain really sucks and has the ability to keep you up at night.  Any input or other experiences you could share would be greatly appreciated. 

Brad

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jc2dad's picture
Replies 4
Last reply 10/4/2017 - 5:42am

I spent several hours last night on the memorial pages, paying particular attention to those memorials that had a link and maybe a photo.  Many of the stories were so inspiring.  What I noticed as I was scanning through the pages, is a significant decrease in memorials post approximately 2011-2012 range.  There were many, from the past 5 years, but not nearly as prolific as prior to the introduction of all the new treatment options.  For me, it gave me a ton of hope, and thought I would share this positive observation.  Keep fighting and believing in Faith!

Jonathon

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/3/2017 - 9:39pm
Replies by: Anonymous

Had a deep nodular melanoma on arm about a year ago - 2c following WLE and SNB. On the watch and wait protocol, having been offered and declined interferon. Reading here was invaluable getting through and adjusting to diagnosis. Thanks to all of you.

My first colonoscopy this year was all fine except for a "nodule below dentate line" firm and ulcerated, not a hemorrhoid, maybe a skin tag but Mel is tricky so doc referred me to another specialist for anoscopy since it was "outside her area".  I procrastinated until my primary doc saw order and insisted I make appt. 

Anyone had a biopsy from this area ? Having a little anxiety. Ugh. 

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stacijane's picture
Replies 18
Last reply 10/3/2017 - 8:01pm

I want to introduce myself and briefly tell my story.  I was originally diagnosed with melanoma in July 2016, and after a wide excision with sentinal node it was determined that is had not spread to lymph nodes and I was put on a 6 month scan/3 month dermatology follow up plan.  All seemed fine until about 3 weeks ago, when a cyst I had removed from my back turned out to be melanoma.  Tuesday (9/26) I received the results of a PET scan and MRI, it was found that one lymph node in my right armpit is involved, everything else looks clean. 

My oncologist has offered immunotherapy (I apologize, the name of the drug escapes me - still processing everything) to start and said that a second drug can be added should it be determined it's necessary down the road.  He has also referred me to Roswell Park in Buffalo, NY and I'm waiting for a call from them to set up an apointment for a consultation there.  My oncologist suggested they may be doing trials there that could potentially "cure" me, while all he can offer locally is "maintain and hope". 

I'm just beginning this journey, and your stories of survival are so imspiring to me.  I learned quickly when I was told the first mole was melanoma that Google is NOT your friend!

I may be naive, but I'm hoping that because my first and second occurences were on my mid/upper back, and because my scans show involvement on just one lymph node at this time, that my prognosis is hopeful.  I have grandbabies to watch grow up, damnit!

 

 

 

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KAF's picture
Replies 15
Last reply 10/3/2017 - 10:40am

HI all,

I have been one of the lucky ones who, after being diagnosed stage 4 in May of 2016, has had a full response to the drugs (3 x opdivo/yervoy, opdivo every 2 weeks since end of Oct 2016).  I have had the rashes, blown up pituitary 2x, vitiligo, swollen joints, etc... but I'll take it all for the amazing response I've had to the drugs.

At my opdivo appointment today my doc informed me that she had gone to a conference 2 weeks ago and new data shows that being on Opdivo for one year after full response is sufficient but some docs still feel that 2 years is optimal.  She is not making any rash decisions but we were going to discuss again in a couple of weeks.  Does anyone have any knowledge about this or can share what they chose to do?

 

thanks

karen

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