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 4
Last reply 6/12/2015 - 1:41pm
Replies by: Julie in SoCal, ConstructionCM, Anonymous

Hey Julie,

I have not seen you post lately so I was wondering how you are doing on Keytruda.Have you had scans yet and were the results great? I hope that you are doing well.

Anon

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arthurjedi007's picture
Replies 8
Last reply 6/12/2015 - 12:55pm

Saw the regular surgeon today for my t10. I've decided waiting 4 to 6 weeks for a surgery that will probably get cancelled during the angiography anyway like last year. Plus a minimum 4 week downtime to probably 9 to 12 months recovery to get back to where I'm at now. And that's all best case. There are huge risks of paralysis and infection and the rods not holding. I've got at least 30 other tumors some of which keep growing and a new one showed up. Can do ablation now and surgery at a later time if needed.

Bcause the spinal cord is so close ablation cannot get all the mass in my spinal canal.

My saint Louis doc says he will do radio frequency ablation to burn the tumor mass in the spinal canal. He says he's had better success burning instead of freezing melanoma.

My mayo doc will do cryo ablation to freeze it. That's all he does and people all over the world go just for him to do their cryo.

So I dunno should I go with my local doc and have it burned or the mayo doc and freeze it? The regular surgeon today said they are not doing anything at mayo for ablation they aren't doing in saint Louis.

Downtime is supposed to be at most 1 day with a few days light activity.

Artie

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tschmith's picture
Replies 9
Last reply 6/11/2015 - 6:20pm
Replies by: _Paul_, tschmith, Mat, Anonymous, arthurjedi007, BrianP, DZnDef

I was first diagnosed with melanoma in 1998...Stage 1A.  It recurred in February of 2013 in my brain.  I had a craniotomy and SRS.  Then it was found in my lung, then my spine and well....all over.  Radiation, spinal surgery and fusion, Yervoy (pituitary gland didn't like it), failed trial at NIH all followed.  But........After a year of Keytruda, my PET/CT scans and Brain MRI show no evidence of active malignancy!!!!  Immunotherapy gives us so much hope! 

Keep fighting!

Terrie

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Ericaloney78's picture
Replies 6
Last reply 6/11/2015 - 2:05pm

Who is here who has/knows someone with MM?

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amelanomajourney's picture
Replies 8
Last reply 6/11/2015 - 1:45pm
Replies by: gaby, amelanomajourney, Anonymous, mwconklin, Ames K

Hi there,

Just wondering if anyone else has completed the 1 month high dose 11 months low dose interferon protocol.  How long did it take you to get back to "normal" after?  Any residual side effects?  Does anyone know of women who have become pregnant post-interferon?  

Thanks!

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brewgirl68's picture
Replies 5
Last reply 6/11/2015 - 10:09am

Can someone give me any input on this trial:

https://clinicaltrials.gov/ct2/show/NCT02129075?term=melanoma&recr=Open&...

It's one of the very few that I can qualify for, but I'm not familiar with these vaccines. I'm fully resected (Feb. this year) right axilla, CLND of 15 nodes, 3-4 positive with matting. NED so far with scans next month.

I'm looking for some insight from someone with more knowledge than I regarding vaccines.

Thanks!

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las630's picture
Replies 4
Last reply 6/11/2015 - 10:01am

I was just wondering... Does it hurt when they inject the dye into your leg for the SLN biopsy?

Also, I was curious if anyone else here is a Stage IIB and what the likelihood is of the cancer being in my lymph nodes? 

My surgery is next Friday  (my melanoma was a 3.5 cm mole that was removed from my inner leg.  It was 1.2 Breslow, non-brisk TILs, positive for ulceration, and had 2-3 mitoses per mm2)

Thank you and God Bless

Lisa

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AnitaLoree's picture
Replies 2
Last reply 6/11/2015 - 8:02am
Replies by: Bubbles, arthurjedi007

Has anyone out there had any surgery while taking Keytruda? My husband's resected malig mel, up in his spinal cord at C1-2, is stable, on Keytruda X 9 mo., no mets. His only SEs from Keytruda are itching & fatigue. So his orthopedist, in consult with his Onc doc, is suggesting arthroscopic repair to MRI defined meniscal tears which are causing him significant pain in his left knee and difficulty walking.  He uses hiking poles for stability & can't walk far at one time.  His knees were fine, never a problem, before surgery 10/13 but the left knee was painful to flex after surgery.  As he recovered, it began improving. His knee began to really bother him, would give out, about a month after starting Keytruda (11 months after surgery) & it's steadily gotten worse. I understand immunotherapy can cause increased pain at sites that have already some irritation/inflammation, as say someone who has coexisting arthritis.  We're with Kaiser.

Appreciate any wisdom, red flags, questions we should ask, advice from your experience with surgery/Keytruda.  Thanks in advance.  Have gotten so many helpful tips/links from everyone's posts..A.L.

 

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ahren_b's picture
Replies 6
Last reply 6/10/2015 - 7:41pm
Replies by: ahren_b, Anonymous, Teochasse, Janner

Hi All,

I'm so happy to have found this resource, I've felt a little lost since receiving my diagnosis last week. I went in a year ago for a small patch of discolored skin on my neck below my right ear and was told that it was nothing to worry about (no tests were done,) a year later I have a melanoma that is "At least 3.5mm deep" the at least part is that the dermatologist scraped it off not really knowing what it was and sent it off for biopsy. The pathology report said the melanoma went through the entire sample so now I'm having surgery done to hopefully remove the rest while testing the sentinel nodes for any spread. My doctors are sharing very little information with me and although I've asked, no resources or support suggestions either. I feel like I'm twising in the wind, I don't even kow what stage it is. I keep thinking "this little tiny mole is causing all this grief? How is this possible?" My labs have all come back normal, and my surgery is scheduled for Friday; I'm told it'll be a week or so before I hear back on the node biopsy. I'm doing my best to keep it together for my family and friends and 90% of the time I'm succesful. They're all being great ... but none of us really know what to expect out of this situation. Any advice for the surgery or what to expect afterwards would be greatly appreciated.

~Ahren

 

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Gordknight's picture
Replies 7
Last reply 6/10/2015 - 2:45pm
Replies by: Aundrea, Gordknight, Anonymous, Squash, Janner

Hi everyone. Sorry to be a bother. I can tend to be a hypochondriac but advice here always helps. I was diagnosed with stage 1a melanoma clark lv 2, .22 mm depth, no ulceration and less than one mitotic figure on the left side of my neck back in october 2014. Had wle done in november (initial lesion was removed with shave biopsy with clear margins). Wle excision tissue also came back clear. Since then i had one small issue where a part of my wle bled and needed re- excision to be safe. Came back with some abnormal squamous cells but derm said its nothing to be concerned about. That was a month ago.

Now i have found a hard lump a bit above and back behind my wle scar. Not sure if its a lymph node or what but i think it is. My dilema is im out of town till august first. Im going to go see an insta care doc today but dont know how much help that will be. How concerned should i be? Hard to not freak out and let my mind go to dark places.

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Roncole11's picture
Replies 7
Last reply 6/10/2015 - 1:19pm

I have been diagnosed with metastized melanoma in my lung, I also have Crohns Disease and have been on immune suppression meds for about 15 years. Because of the Crohns, I am unable to take yervoy.

Does anyone else have this problem? I have been to Johns Hopkins, and the doctors there were not a big help.

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Anonymous's picture
Anonymous
Replies 7
Last reply 6/10/2015 - 12:24pm
Replies by: Anonymous, Janner

I wonder what is the recurrence rate for a stage 1a melanoma. I have read that the recurrence in thin melanoma is low and the chances of spread local, regional and distance is low, but how low is it? Exist any statistics in thin melanomas grouped by breslow depth ranges or clark level? How  low risk is with a Breslow 0.63 mm, clark III mitosis < 1 no ulceration and primary on top trunk ? What are the chances of a recurrence? I have read some people with stage 1 turns to stage 3 or 4 some years after diagnosis.

Thanks!!!

M.

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robbier's picture
Replies 7
Last reply 6/10/2015 - 12:24pm
Replies by: Anonymous, Girl52, tschmith, arthurjedi007, Bubbles

Back in March of this year, I had a PET/CT which showed hree hot spots.  Three surgery later, a trip to MD. Anderson.  Had a Pet/ct scan in July that showed two area of concern.  On in the abdomen and one in the mid right shaft of the femur.  Had a bone scan August 10.  Which showed no evidence of disease at that time.  Cancer Doctor thought I was in remission and didn't need treatment.  Around the last week of August I went to see my General Health Care Doctor.  I felt like I had a pulled groin muscle.  He gave me muscle relaxer, two weeks went by and still in pain.  By his time I was running a low grade fever.  Went back to Dr. He found blood in my urine, and a appointment for a Urologist for Oct 13.  Was sent back to Cancer doctor He sentme to see a Bone doctor.  Saw Dr. Harcout around Sept 16th.  He thought at this time, I had pulled muscles 7,8 in the left left and needed physical therpy.  The pain so severe I couldn't drive, and couldn't walk.  Got a friend of mine to take me to Hospital.  I finally got admited and they did a CT can with and without contrast, and MRI.  Monday ( Oct 6, 2014) the Cancer doctor said there was lesions seen in the abdomen towards he pelvic area, and they found a L4 fracture of  the spine.  Released from Hospital Oct 7th.  Came home, wednesday Oct 8th was sent to see Dr. Hixson for possible radation therpy to the spine.  Dr. Hixson, decided I need to go back to th hospital.  Was re-admitted to Hosptal, in Mobile, Al.  More test, More MRI, of spine, and CT scans with and wothout contrast.  They found changes to brain, the cancer is not in my brain, just changes, those lesions, and possible cancer in the spine.  The first thing they did was pain control.  The specialist said he didn't think they could operate on the L4 because they thought there was evidenve of disease.  Was release Oct 10th from ospital with pain meds and pain hopefully getting under control.  Went back and saw Dr. Hixson after getting out of hospital on Oct 10th.  At that time, I was fitted with a face mask, and lines on my belly.  I just finsihed my first week of radation treatments, for that L4  spine.  They decided first to treat me with radation for the 3 weeks, so I have two more weeks to go.  Then I will be given two weeks to three weeks of rest. Then My cancer doctor is talking about a Braf inhibotor ,two differnt kinds of chemo pills is what I call them.  He wants to see if the these wok, then He said Yervoy.  I still believe God is in control of my life.  I know I have a road ahead of me, doing the best I know how to stay postive in my situation.  Thank all of you for your prayers at this time.

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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blackcat4766's picture
Replies 3
Last reply 6/10/2015 - 12:02pm

Greetings,

im waiting for Yervoy to enter the UAE. I was wondering what kind of side effects does it give you?

Blackcat4766

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/10/2015 - 10:54am

Does mucosal melanoma respond to immunotherapy treatments differently from cutaneous?  My father has a ery high tumor burden and was just taken off one of the pd-1 trials after only 2 mts since his scan showed many new nodules and no improvement.   His oncologist is now recommending yervoy.  Have any of you had experience with a similar situation?  

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