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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Hi Celeste 

i have been suffering with debilitating arthritis/myalgia since March. Especially in the mornings, I am unable to move even to turn on my side or bend my knees or even turn my head. It improves during the day and I lead my life ok but can't work or move very well.

 My oncologists have sent me to a rheumatologist who has sent me for every scan and blood test known to mankind (spine and shoulder mris, bone scans etc) so a diagnosis of arthritic spondylitis has come back. Now I have to go for another scan to confirm and more bloods and he has put me on ketoprofen on top of the 25 mg steroids I've been taking since March. Previous antiinflammatory (inza500) did nothing  

this rheumatologist is very scientific so he will not assume that my problem is drug related and wants to eliminate all other possibilities first (I was on keytruda for 11 months and stopped in August)

as there was sarcoidosis also found back last June when they biopsied my lungs he is going to try to treat this as pertaining to that condition first 

now I have have to see an eye specialist as he wants to try me on plaquenil ( in three weeks time) which should be effective if the sarcoidosis is causing the problem

Because of your kind suggestion in another post, I mentioned infliximab to him and he does not want me to have it as he says it causes melanoma even though it is the normal go-to drug for the sponylitis

so to my question to you: do you know of any cases where someone has taken infliximab and stayed with stable tumour or NED?

my gut feeling is that the pembro has  worked incredibly well, so well that my immune system has gone the other way, but the dr disagrees. He may be right as I really have not found one other person with these symptoms

best wishes Anne-Louise 



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DZnDef's picture
Replies 2
Last reply 10/15/2015 - 4:18pm
Replies by: DZnDef

Hi all,

For those curious about what the alternative medicine crowd has on offer for cancer patients, a new docuseries is starting tonight on that topic.  MPIP's spam filter will not allow me to post the link so google "The Truth About Cancer" and you'll find their website with access instructions.

I know most people on this list are not interested in alternative treatments and some are vehemently opposed to having them mentioned.  I believe we are all grown-ups and are entitled to as much information as we can gather to make up our own minds.  If you're interested, google "The Truth About Cancer" to find their new series starting tonight (each episode is available for 23 hours before being taken down).  The new series is called "The Truth About Cancer:  A Global Quest".  The final episode features cancer survivors telling their stories.

Maggie - Stage IV (lung mets unknown primary) since July 2012

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micheley's picture
Replies 2
Last reply 10/14/2015 - 6:06pm
Replies by: arthurjedi007, Jubes

Hello everyone,

Having a good pity party for week out from modified radical neck dissection on Oct 5th and feeling very low. Several things i didn't expect, severe hoarseness, numbness in tip of tongue and scalp, (temporary 2-6 month) lower lip paralysis, burning/stinging pain along and around the incision line -- and a crushing drop in mood -- feeling hopeless and very scared. Now, the worst part is awaiting the pathology report, 3abc? Then, depending on my final staging, my fears about what (possible wrong) decisions I will have to make to try and stave off recurrence.

I am no doctor. How am I supposed to be my own best patient advocate and know what to do and where to go when I am clueless to what this all means, specifically for me and my melanoma? I know I need to trust my oncologist, Dr. Schuchter, at Penn, but I am terrified. Terrified I will make the wrong decision which will impact the course of this cancer and what will happen to me. No to mention, of course, costs. I am self employed and if I don't work, i don't make any money.

The fear about the future and what is to come is terrifying. How do you stay in the day and deal with the "what ifs?" Am I or will I be strong enough to get through what is ahead. I will have all answers on Thursday after appt with the oncologist. It is all still so surreal and I still wish I could go back -- go back to feeling safe and happy. Sorry for dumping. I just am feeling so badly and sorry for myself -- hate to admit that, but that is the truth of it.

Any input, direction, encouragement would be most gratefully and graciously appreciated.

Peace, wholeness, health, and happiness wished for all of you.


Michele C Yerger

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DennysGirl's picture
Replies 7
Last reply 10/14/2015 - 7:44am

My hubby is having pain in his left lung which did not have any spots before. He had just had a CT scan beginning of August and has been on combo since mid June. It seems to be the same type of pain he had from his first tumor (inoperable) in his right lung back in June. 

Do new tumors pop up while on the combo that the drugs can't affect? My dad seems to think the pain is all in my husbands head because a new tumor can't pop up while the meds are working on other tumors. 

He was doing so good until the past week. 

Renee~loving wife fighting for her hubby! 

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SunnyTheNurse's picture
Replies 5
Last reply 10/14/2015 - 2:08am
Replies by: SunnyTheNurse, Jubes, CHD, stars

Hi there, I'd love to hear from anyone else diagnosed with this very rare cancer. 

I'm 39, live in Australia and have had two large growths removed by way of radical hysterectomy. Furthermore, biopsies from that found cells in my vagina and removed pelvic lymph nodes. I've had radiotherapy and am now about to begin a new immunotherapy treatment. It's uncharted waters in terms of how to beat this. Please share your approach. Erin


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Anonymous's picture
Replies 4
Last reply 10/13/2015 - 1:27pm

Has anyone had issues with an overactive thyroid after taking keytruda.

I have seem to have some issues swallowing and i am sort of restless and irritable.

I was wondering if this could be thyroid related and what is my doctor likely to do about it.





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Shannon's picture
Replies 6
Last reply 10/12/2015 - 7:43pm

Hello All,

I just signed on to this site and am having a hard time navigating, hopefully this message will come through.

3 weeks ago I went to the derm for my anual full body scan to check for problems, she found something, did a punch biopsy and sent it off.  Here is what the path said, I am very nervous.  I already have uterine cancer and simply cannot go on in dealing with yet another diagnosis, when I simply went in for simple peace of mind =(

"Compound nevus with architecture disorder and moderate to severe cytologic atypia.

Examined biopsy edges are negative for atypical nevus".

She wants to take more of the border to make sure, I guess that they got it all.  I am worried that they want to verify their findings that this could possibly be melanoma.  I have never had anything like this before.  I am 48 year old female, blonde with blue eyes, very fair skin.  Did some indoor tanning years 3 years worth.  Please help!


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Gene_S's picture
Replies 9
Last reply 10/12/2015 - 6:58pm

My husbands journey with melanoma started in Jan. 2008, had 4 surgeries and was watching and waiting until he became Stage IV in Oct. 2010. His SLN came back negative and he had his WLE on Feb. 14, 2008.   Mets in the Liver, Lungs and an unresectable putting pressure on the C1-C2 Cervical spine and 4 sub q's by Mar. 2011.  The unresectable would have left him a paraplegic if they did surgery.

Started a clinical trial in March 2011 on Ipi (10 mg/kg) and GM-CSF.  Did the 4 infustions of Ipi in 12 weeks and doing daily injections of GM-CSF for 14 days and then no injections for 7 days.  Watched the sub q's shrink and it was amazing.  Took photos with a nickel so you had something to compare them with.  Went on maintenance dosing every 12 weeks for the Ipi and the whole time doing the GM-CSF on for 14 and off for 7.  In October of 2012 he became NED.  Remained on the trial on maintenance doses until Dec. 2013 and them quit taking the Ipi and the GM-CSF.

We are so very happy that he has remained NED (no evidence of disease).  If you would like to read more about his journey then check out his profile.

Judy (loving wife of Gene Stage IV and now NED)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gordknight's picture
Replies 9
Last reply 10/12/2015 - 2:11pm

So to give you a brief history I am somewhat of a hypochondriac.. was diagnosed with a stage 1a melanoma back in October of 2014 and had my WLE in early November.  So its has almost been a year.  My melanoma was located on my left neck, Superficial Spreading, was clark level 2, 0.22 mm breslow thickness and had no ulceration and had no mitosis.  Because of the shallowness of the lesion no SNB was done.  The scar has been healing nicely.

I know that even those of us that arent hypochondriacs it takes a while to not think that every new pain or ache is melanoma coming back of metastitis.  Anyway I have been keeping up with my appointments with my Derm and he has removed a few spots since and all have come back benign.  

Anyway, about a month ago I woke up and my left ear felt compltely muffled.  Hearing was drastically reduced.  Went to an instacare who sent me to an ENT who couldnt find anything.  within a week after the ENT appointment my hearing came back completely, however ever since (so the last 3 weeks or so) I have had pressure on and off in both my ears, and random sensations and pains in my face and shoulders and neck, but the most concerning are random ice pick like headaches that come and go.  There is no rhyme or reason to them, they are sharp and stabbing and usually occur on either my left or right temple.. sometimes on the top of my head and rarely the back of my head.  Sometimes I go 5-10 minutes between them.. sometimes I go 5-6 hours between them and otherwise feel normal and fine.  No real balance issues, no vision problems, haering is mostly back to normal.  No swollen lymph nodes that I can feel.  

Of course my mind instantly jumped to brain mets from my thin melanoma after this not clearing up for 2-3 weeks.  I know the odds arent really tipped that way, but of course melanoma has destroyed my way of thinking logically. To be fair I have been under a lot of stress and anxiety over the last two months with health issues my wife has had that have thankfully been resolved.

So I went to my GP today and told him the whole story and because of my melanoma history he is sending me in for an MRI tomorrow.  He said the symptoms dont sound typical of bran tumor but beacuse I had melanoma he doesnt want to take any chances.  He then also perscribed me an antibiotic that he wants me to take if the MRI shows nothing or sinusitus.  

Anyway are we jumping the gun getting an MRI with a lesion as thin as mine?  I know that melanoma can spread at any stage and its a tricky beast, but it kind of scares me.  My derm said that the chance of my melanoma spreading internally or coming back is less than 2 percent and that the chance of me getting another one in my lifetime is around 1 in 50.. but 2% is 2%.  Anyway thanks for listening to me vent and thanks in advance for any advice you have.  Ill let you know how it turns out. 

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lsmith - MRF's picture
Replies 3
Last reply 10/12/2015 - 12:18pm


As you are aware, there is an unusual amount of spam on MPIP right now. We believe there is an issue with one of our spam filter's and we're working to fix this as swiftly as possible. We are also working to implement measures to the website to help prevent this from happening again. 


Lauren - MRF

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Tracyd715's picture
Replies 5
Last reply 10/12/2015 - 10:04am
Replies by: Anonymous, Tracyd715, Patina, kylez, Jubes

Well, my husband went in Friday for his gamma knife treatment. On the new MRI on the more advanced machine they found 13 pea sized lesions along with the original one he was there for. They treated all of them with no problems. Then early Sunday morning I was women up by him having a seizure in bed. Got him to the ER by ambulance and shortly after getting here he had another shorter one. They found swelling from the procedure and the main lesion had bled. I guess the bleeding isn't uncommon with melanoma mets on the brain. So hopefully with the medication he's getting this should straighten out. Ugh! Was hoping the gamma knife was going to be easy.

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emagdnim83's picture
Replies 3
Last reply 10/12/2015 - 9:38am

Hello everyone,

i have posted about my father a few days ago ( and wrote about that his 2nd dose of opdivo was delayed because of low lekocytes. Turned out i wasn't low leukocytes but his blood test showed he is low on albumin and is now getting an infusion with human albumin tomorrow instead of his opdivo dose.

Has anyone experienced this? Is it something to be worried about?

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Sbdeutsch's picture
Replies 3
Last reply 10/11/2015 - 11:46pm
Replies by: Patina, 273c

My boyfriend is supposed to start a BMS Clincal Trail.  They need to test for PD-L1 biomarker.  He has now sent two set of tissues over the past 6 weeks to BMS and both times they have come back saying the sample was not sufficient enough to test/analyze for the biomarker.  We are having Moffitt send a third sample out to BMS but I am so worried it will have the same issues.  We are running out of time for him to get into the study since he needs to start within 12 weeks of his last surgery.  Has anyone run into this issue?  Does anyone have any adivice?  Greatly appreciated.



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liberty04281's picture
Replies 1
Last reply 10/11/2015 - 10:39pm
Replies by: Patina

We have a lot of spam. Can it be fixed?

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geriakt's picture
Replies 5
Last reply 10/11/2015 - 5:40pm
Replies by: geriakt, lsmith - MRF, arthurjedi007, jpg, Anonymous

Why not just make it mandatory to set up a profile to place a post to stop all this spam?  Allow all to read with out a profile.  Once a profile is posted log the IP address and if they post spam, block the IP.

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