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.

Expand/ Collapse Topic
 
Replies By
View Topic

Hi all plan is PD1 so any one who has experience with it much appriciated . Starting ASAP , cannot do radiotherapy node too near wind pipe and could damage it.

Thanks

Scooby ❤️

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 7/20/2017 - 2:22pm

 My husband had to stop the opdivo/yervoy treatment after three. He was on a break for a month (after a few days in the hospital) to help rid the side effects.  Next week he will have a  scan and talk to his doctor about the maintenance.  From what I am reading it will be opdivo every two weeks.  I am not sure if he will be willing to try this since his side effects were so bad with the combo.   Can anyone shed light on the fact that it wil be just the one med and perhaps not nearly as bad?  I understand everyone is different--I am just not ready for him to "give up".  I feel he needs to at least try it and see how his body responds.  Any words of encouragement?  Thank you in advance!

Jim's wife

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 7/20/2017 - 1:02pm
Replies by: casagrayson, liberty04281, Anonymous, jenny22

I just read that Senator McCain's gioblastoma newly diagnosed is related to his previous melanomas going back to 2000.  Really scary!  I hate thinking that the mole on my shoulder that was removed last year could potentially pop up as brain cancer in a decade or so.   This disease scares the snot out of me.  My first year post-cancer was full of denial.  So far this second year is more anxious and frightening for me.

 

Login or register to post replies.

ImMark's picture
Replies 1
Last reply 7/20/2017 - 4:25am
Replies by: Sharon93065

Hi everyone,

September 2016 I completed 3/4 ipi/nivo infusions for stage IV melanoma. But had to stop as toxicity became too much.

Following treatment I had my lymph nodes removed as they had reduced but still had Melanoma present.

Fast forward to yesterday and I received the results from an MRI which showed an 8cm tumour in my pelvis. My Oncologist now has me starting on BRAF as I tested positive for the BRAF gene.

I was sad that the ipi/nivo combo hadnt worked as well as I had hoped. But my Dr told me that it is still an option for me down the track as I had a response.

Has anyone gone to BRAF following a response to the ipi/nivo combination treatment?

Login or register to post replies.

DZnDef's picture
Replies 3
Last reply 7/20/2017 - 1:28pm

Hi all, I'm hoping one or more of you might have some ideas as to what these might be.  Prior to Easter, I started noticing some tender squishy lumps in my upper arm muscles, back of my upper thighs a back of my shoulders and neck.  They were about the size of a small jelly bean and the consistency of gummy bears which is to say, squishy, not hard.  They seem to come and go (or at least the tenderness does).  I have trouble locating one unless it is tender as they tend to be fairly deep, not right under the skin like a sub q.  I brought them up to my oncologist but of course they were in hiding at that visit.  Being an oncologist, of course he has cancer in mind but I've had two sets of scans since then and these are not showing up.  I now have a few spots on my right side and belly.  More googling has brought up rheumatoid arthritis (I thought that affected joints though not muscles).  Ganglion cyst is another possibility per Google.  I mentioned lipoma and fibroma to my oncologist but he said those don't come and go.  Anyone experience something similar?  Or have some ideas?  My meds are Tafinlar, Mekenist, Keytruda, prednisone, Keppra and Nature-Throid.  I think that's it.  I also take a daily probiotic and vitamin D3.  Any input is appreciated.

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

Login or register to post replies.

jennunicorn's picture
Replies 8
Last reply 7/20/2017 - 1:16pm

Since being told my TSH number was high 2 weeks ago, meaning my thyroid is underactive, I have noticed that I am getting a lot more fatigued than usual. Mostly in a weird foggy brain, feeling off, not quite myself, tired way. For those who have also experienced hypothyroidism, does this sound similar?

I will see the nurse practitioner tomorrow before my infusion since my oncologist is on vacation this week, and will let her know all of this. It usually takes until the end of the day to get the TSH blood test back, so I won't know if it's gotten worse until tomorrow evening. 

When others have started on Synthroid (levothyroxine), how long did it take before you felt more normal again? I am in the process of interviewing for a new job, I have my second interview on Friday, and if I get this job I really need to be back to more normal energy levels, so I'm stressing a little bit about this if you can't tell. 

 

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

Login or register to post replies.

The previous post was mine, I forgot to un-check the Anonymous box ,so sorry for posting as anonymous,

Teodora Chasse

T.Chasse

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 7/19/2017 - 2:34pm
Replies by: adrianc, CindyCo

So yesterday I met with Dr.Stephen Hodi and his team at Dana Farber. We discussed treatment options for stage 2 and 3 mucosal melanoma patients. In short, he confirmed that surgical resection is the best initial course  of action for this type of cancer when applicable  . Interferon and Yervoy / also radiation/ are the current options for adjuvant therapy for resected mucosal melanoma for stage 2 and 3 .However he said no one can predict if they can work or not on mucosal melanoma as these drugs were developed for  cutaneous melanoma .Dr.Hodi  gave me a printout of a clinical trial conducted recently in China for patients with resected  mucosal melanoma  stage 2 and 3 with a chemotherapy drug  that showed  promising results / 40% response rate/ and 2 years longer OS. He noted again,no one can predict if this chemo drug can apply individually.If any of you mucosal melanoma fellow warriors is interested in getting a scanned copy of that clinical trial, please  feel free to direct message me including your E-mail address, so I can email  it to you.

Connie D.,I tried to call you this morning .I hope that you mom is doing good and feeling well with not too bad side effects in her current clinical trial.

Have a great day everyone,

T.Chasse

Login or register to post replies.

momsmole's picture
Replies 6
Last reply 7/20/2017 - 8:25am
Replies by: momsmole, CindyJ, Janner

Over the past year or so, after my melanoma diagnosis last May, my husband who is 84 and a confirmed sun-worshipper all of his life, has been having some basal and squamus cell carcinomas removed from his forehead.  We were thankful they weren't more dangerous, altho he felt disfigured (the scars are very small and not very noticiable but they bothered him).  Yesterday he went to his dermatologist for a follow up from the most recent removal.  He did not tell me that three weeks ago he had noticed an odd mark on his left thigh, but knowing he would see the doc, he wasn't too concerned.  The doc took one look and said that's not squamas and wanted my husband to see a general surgeon.  Fortunately, he referred N to the same surgeon who had done my WLE so N knows him.  

The complication is that due to a heart condition my husband N is on coumadin a blood thinner.  The last time they had him off of it for a colonoscopy in 2011 he had a stroke, a mild one, but it left his speech impaired.  When he needed a colonoscopy a few years later, they hospitalized him and managed the blood thinner in a different manner with no problems.  Now he was told he'd have to be off coumadin for 4 days.  We don't know if that's because of a biopsy or an in-office excision.  the dermatologist left the office in a hurry, according to N, as if he didn't want to tell him he had cancer.  

i guess right now all we can do is consult with the cardiologist who oversees the coumadin and the surgeon who will determine the procedure.  Of course, we don't want to go thru stopping the coumadin twice if we don't have to as not only is it potentially life-threatening but stressful as hell.  

I've read on this forum and other melanoma sites that one can't tell by looking whether or not a lesion is melamona, but I've looked at images and N's spot is suspicious, more than mine was.  It's an assymetrical circle with one side kind of pink and the other like a crescent moon kind of white/gray crusty.  It's about the size of a little finger nail.  It's on the front of his upper thigh.  I know I'm worrying before we even know what to worry about, but given my experience where my mole had been on my shoulder forever and didn't look like anything other than a mole except it itched and bleed sometimes and I never once thought it was skin cancer, now I'm much more aware of what could happen.  And N is 84, heart condition, COPD, blood thinners, and could potentially need lymph node removals from groin which would impede his mobility for. while.  A more complicated situation than mine.

In the it doesn't matter category, it seems unfair both husband and wife should have to face skin cancer within a year of each other.  I've hardly gotten used to living with my own anxieties and have put off getting a care team in place due to denial.  Now I need to get it together to support him calmly and with a focus on his experience which will probably be completely different from mine.  In some ways that will be a head game.

He sees his GP today and hopes to see his cardiologist on a drop-in to see if he can coordinate with the surgeon.  His appointment with the surgeon is next Wed.  I remind myself that doesn't mean we have to immediately stop the coumadin.  We can reschedule if we don't have time to get that part done right.  But first I am scared of the risk of stroke, and then I am scared of the biopsy results, and then of course I am scared of the surgery and risk of coumadin again.

Long story as I'm prone to, but if anyone one has gone thru this themselves or with a loved one, I'd appreciate hearing your stories.  I also wonder if at 84 N's high risk of stroke when messing with coumadin outweighs the risk of possible melanoma.  Any thoughts would be appreciated.  

By the way, to update my first post from a few weeks ago, the spot on my inner lip has darkened.  I have to wait 5 weeks for the dermatologist, but I do have one now and I also have a melanoma oncologist appointment in early Sept.  This forum and those who responded to my post encouraged me to climb out of my cave.  THank you!

 

Login or register to post replies.

jc2dad's picture
Replies 5
Last reply 7/19/2017 - 8:45am

I had a black line that appeared in the fingernail of my middle finger of my left hand about 18 months ago.  After a couple of months the discoloration spread and the nail split.  I made an appointment with my PCP and had him examine it along with some stomach issues I was having.  He said the nail was nothing to worry about, probably fungal or damage to the nail bed from trauma (of which I had none).  Long story short after complete deteriation of the nail bed and a raised ulceration of the skin below the nail bed and two more examinations by two different doctors (both who said it was an infection at best and prescribed anti-biotics) over the next year, I finally visit the ER because of the pain and bleeding in the finger.  ER doc immediately refers me to dermatologist and get biopsy the same day.  Preliminary pathology came back as malignant melanoma, blood work shows melanoma is already in my blood system, so Dermatologist referred me to Md Anderson, said the mitosis shows very agressive.  Don't know if it has metastized anywhere else yet, but definitely having symptoms of metastizes in other areas.  39 years old healthy with 4 small kiddos that I am raising by myself, so I have to beat this.  Have an appointment with Dr. Michael Wong at MD Anderson on August 1st.  Sorry I don't have more information at this time.  Any advice would be appreciated.

Login or register to post replies.

sister of patient's picture
Replies 17
Last reply 7/19/2017 - 7:32pm

Hey all - we've had great news today to share, CT last week and results today are astounding. While onc won't say NED, we're just about there insomuch as splenic lesions appear to have resolved and last remaining liver met is gone. There's a couple of little things lighting up that they want to watch (2 new tiny spots, one in each lung but they could be anything and what is likely scarring in the spleen) so, yeah, it seems the monster is just about spent.

Onc did admit today that Leisa's tumour burden was just about the heaviest she had ever dealt with to have such a successful outcome - we kind of suspected that. She will continue Nivo for another 3 months and of course, have ongoing scans but also received a schedule now to start a slow taper from the steroids too.

So, it's a great day for us here (for some reason I can't stop crying - tears of joy though!!) and I sincerely wish everyone on here still suffering will soon get similar results and news!!

Best wishes to all!

Barb

 

Login or register to post replies.

Jubes's picture
Replies 14
Last reply 7/19/2017 - 5:25pm

Hi all

just wanted to share with you that my biopsies fromfriday are clear. They took five biopsies from 2 sites in my chest and all clear of melanoma despite very hot pet scan

it seems the hot spots were likely granulomas. They didn't check the liver and neck spots but assume they are also not melanoma 

we will continue to check with 3 monthly pets but even a false negative is better than a positive

thanks to all for suggestions if it progresses

anne-Louise 

 

 

Login or register to post replies.

MovingOn's picture
Replies 8
Last reply 7/20/2017 - 1:15pm
Replies by: casagrayson, Jubes, Anonymous, BrianP, Rod, bcbcbc55, miaka618

May 5th I started on Prednisone (60mg/day) due to hypophysitis from Ipi (diagnosed via MRI). I tapered down by 10mg every 7th day until reaching 5mg. I have been at 5mg/day for more than 4 weeks now. But whenever I try to stop completely my headache comes back.

Have others remained on prednisone for more than 9weeks following hypophysitis from Ipi?

I don't see my Endo. again until mid August, that is when we will come up with a long term plan (88mcg levothyroxine, testosterone, cortisol, ?)

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

Login or register to post replies.

Toby0987's picture
Replies 4
Last reply 7/19/2017 - 1:07pm
Replies by: Anonymous, Toby0987, BrianP

Hello-I've been holding steady at 3B since 2013. I see Dr Markovic at Mayo in Rochester, MN. About a year ago the PET picked up low level FDG uptake near my appendix and left mesenteric lymph node. It has grown slightly from .6cmx.6cm to 1.2 cm x.8cm. Have any of you had similar hits on your PETS in this area? I have no Symptoms of appendicitis, but the spot never goes away. Any thoughts? Dr said if I get symptoms to come in right away. He will do a colonoscopy and biopsy the area next PET (5year NED anniversary). 

Login or register to post replies.

MTCowhand's picture
Replies 4
Last reply 7/19/2017 - 1:54pm
Replies by: MTCowhand, Janner

I live in an extremely remote valley in Montana, closest stoplight is 52 miles away and it is much easier finding a doctor for a horse than a human.  There is in theory only one melanoma specialist in the whole state, which I saw last Friday (I am stage 2b), and I am interested in getting a second opinion.  So can anyone out there recommend another oncologist in this land of the Big Sky and little else?

Login or register to post replies.

Pages