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

Dear MPIP Community:

We still have 10 spots open for the Immunotherapy in Melanoma: A Celebration of Advances event coming up on August 12-13 in NYC. This event is for patients (their caregivers) who are taking or have taken any form of melanoma immunotherapy. Registration is requred by Monday, July 11th. The MRF will reimburse you and one guest up to $300 per person for travel expenses. Travel arrangements must be made by July 20th. Your one night stay in Times Square is also covered, as are all meals associated with the event. An agenda and the registration form can be found at the link above.  All questions can be directed to me at education@melanoma.org or feel free to give me a call at (202) 742-5945.. 

I hope you can join us!

Sincerely,

Shelby - MRF

Login or register to post replies.

sister of patient's picture
Replies 6
Last reply 7/7/2016 - 8:48pm

Hi guys,

Just  a quick question on behalf of my sister Leisa - we found out in May that the ipi had gone after her retinas - so, she was put on two kinds of eye drops - prednisone and voltarin. The voltarin will be for life now but she's been tapering from the prednisone.  Last week her sight got really blurry again and yesterday's opthamology check revealed the prednisone has caused cataracts - only 6 weeks of these drops and cataracts - we could hardly believe it.

Anyone else experienced this? And, if so, how long did eye docs wait before treating? Usually, from what I understand, they make you go years sometimes before removing them ... doesn't seem fair with everything else she's having to endure!! I've already done a search on Celeste's blog too but no results returned there.

Thanks for any responses.

Best,

Barb

 

 

 

Login or register to post replies.

Lee Parlier's picture
Replies 3
Last reply 7/8/2016 - 9:24am
Replies by: Lee Parlier, Linny

I am a first time poster but have read a lot of experiences with people fighting melanoma. Here is a little information about my melanoma journey.

SEPT. 2015: Diagnosed after melanoma 2B was removed from my left hip.

FEBRUARY 2016: Pet scan showed melanoma in the left groin area. Near the tumor site.

March 2016: Lymph node removal in groin which showed melanoma in 5 of the 8 nodes removed. Stage 3b

May 2016: Began yervoy (10 mg) every 3 weeks. I have had minor side effects but mainly fatigue and a little nausea. 3RD dose is due tomorrow with a pet scan next week.

Question:

After the second dose of yervoy I had around 20 subcutaneous spots pop up on my trunk mainly. They have a bluish look and about the size of a pencil eraser.They all popped up within a 24 hour period after my second dose. I have had opinions mostly that this is ipi doing its thing. I have also heard that it could be in transit melanoma. I am waiting on a biopsy result but was wondering, has anyone experienced this and what are they?

 

 

 

Lee Parlier

Login or register to post replies.

Bubbles's picture
Replies 4
Last reply 7/6/2016 - 11:38pm

....I just wanted you to know that Miss Pissivity thinks of you often.

Cheers, my friend. Celeste

Login or register to post replies.

Chance16's picture
Replies 17
Last reply 7/15/2016 - 12:29pm
Good morning everyone - Hope everyone is doing well and had a nice July 4th
 
Well, I had my visit to Moffitt and met with Dr. Khushalani and I feel it was for nothing and left me confused.  He said the mel had a 40% chance of reoccurring (standard) and he restaged me to 3B from 3C... big whoop.  He said I had four options (actually 5).
 
Option #1 - High dose Interferon for 1 year; which he highly recommends. He says it would reduce the 40% by 12% (big deal) and I would feel crappy the whole time from side effects. He also said that 50% of the country doctors are for Interferon and 50% for Ipi.
 
Option #2 - Low dose Interferon for five years....no way
 
Option #3 - Ipi; which he doesn't recommend for me for two reasons. One is that I have IBS and the concern for the colitis. The other is the study was done in the UK but the EU has not approved the drug or dosing where the US did and there is no long term data for survival until 2017.
 
Option #4 - His trial with high dose Interferon or Ipi to Pembrolizumab but I would have to get a CLND; which I don't want to do
 
Option #5 - Do nothing.  He didn't bring it up but I did.
 
So, I'm back to square one.  Right now I feel like screw it and not do anything...wait, watch and see.  The choices suck and for what real benefit????  Maybe I will one of the 60% and not the 40%.
Thank you again for listening to my rambling but I would appreciate any thoughts and suggestions.
Best to everyone
Patti

 

Login or register to post replies.

Scooby123's picture
Replies 3
Last reply 7/7/2016 - 12:02pm
Replies by: jennunicorn, Maria C, JoshF

Hi Guys,

Sorry been away a while had a lot on and recovering from Gamma Knife. I went yesterday for my  3 month scans, results next Thursday so a week of worry. So me and my daughter of to majorca for long week end.

Hope you all having a nice day best as you can and i will let you know next week results.

Praying

Scooby123

Login or register to post replies.

gigembritt's picture
Replies 2
Last reply 7/5/2016 - 9:35pm
Replies by: gigembritt, Janner

My recent path report says that my nodular melanoma is :

Clark level at least IV

Breslow Thickness at least .44mm

 

No what I am confused about it that it doesnt seem to match up.  The Clark level would put it past a depth .44mm right?

And why do they use "at least" ?

 

 

 

 

Login or register to post replies.

Patrisa's picture
Replies 3
Last reply 7/6/2016 - 2:21pm
Replies by: Polymath, Patrisa

Hey dear friends, 

can someone please explain the importance of the mentioned marker?

my fathers last report states that his s-100 is  bordeline elevated, his ldh is normal and all other clinical signs are normal... Is this something we should be worried about or it maybe isn't related to mel? It is higher than his levels from the last check up 3 week earlier...

he is otherwise on keytruda and his first pet scan (in may) showed total regression of his mets in the lungs and almost completely gone soft tissue met which was really large...

any input will be greatly appreciated...

love,

Patrisa

Login or register to post replies.

gigembritt's picture
Replies 11
Last reply 7/7/2016 - 12:34am

I have an apt at MD Anderson next week. But I was wondering if anyone could give me any feedback on my path report.  Most of these terms are way over my head.

Sections reveal a compound proliferation of melanocytes composed of atypical epitheloid cells arranged redominantly in nests along the dermo-epidermal junction and superficial reticular dermis, in association with host respons including lymphohistiocytic infiltrate and mild dermal fibrosis.  In addition, there are smaller melanocytees located adjacent to the larger atypical cells.  A HMB$% immunohistochemical study performed at the referring institution hightlights both the larger melanocytes in a patchy weak fashion, while the smaller melanocytes are essentially negative.  An immunohistochemical study performed on unstained slidescut from a paraffin block recieved using MART1/Ki67 highlights both the melanocyte populations and rare positivity for Ki67 is noted. Thought the atypical melanocytes have come nevoid features, due to the presecense of cytogic atypica and host respone, this lesion is interpreted to represent a melanoma arising in assocation with a nevus.  Therefore, the following parameters will apply:

Melanoma, invasive, nodular type

clark level atleast IV

Breslow thickness at least .44mm

Mitotic figures <1

TIL, Present, non-brisk

Associated melanocytic nevus present predominantly intradermal nevus

predominant cytology, epitheloid and nevoid

Surgical margins: invasive melanoma and nevus present at deep tissue edge. 

Login or register to post replies.

Chance16's picture
Replies 33
Last reply 7/8/2016 - 12:34am

Good morning - Recently diagnosed and I am stage 3c WLE and sentinel node biopsy done (node positive) PET/CT scans negative. They are talking about doing a CLND; which I don't want to do. Reasons: #1 complications (if the nodes come back negative I would have to live with the side effects of the surgery) #2 there are probably cells already circulating in my body #3 some literature say it doesn't improve outcomes.  I'm going to Moffitt Cancer Center in Tampa for second opinion. Has anyone else decided not to do it? Any feelings, ideas, suggestions?? I would appreciate any and all feedback. Thank you

Patti

Login or register to post replies.

beneficii's picture
Replies 1
Last reply 7/6/2016 - 8:20pm
Replies by: MoiraM

It's hard to get a good look, but I was able to pinpoint the spot in question by recording a video with my back to the computer and putting my hand on. When I feel the spot in green, I notice that it feels kinda rough, crusty, different from the other moles on my back which I either can't feel at all or which have a smooth, flabby bump. In multiple pictures, not just this one, it looks like a mole but it's looks different from the others. Here is the image:

http://imgur.com/Y7NqVRX

I'm going to try to move up my appointment on 7/21; also, I want to get an earlier-in-the-day appointment.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 7/5/2016 - 6:59pm

Doctor decided i should get scans every 6 months after yervoy. Do people usually get ct scans or pet scans. Thanks

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 7/5/2016 - 10:10am
Replies by: Kimba67, Anonymous, Janner

Can someone please explain:

Ive been reading all these stories about how people have melanoma in situ or stage 1 or 2 and then it suddenly reoccures in the lymph nodes or organs months to years later. My question is HOW? I thought in situ is 100% cureable with wide local incision - and about the same with stage 1 and 2. Would it be wrong pathology results? Or does this happen more often than what I thought?

Login or register to post replies.

B_Hutz's picture
Replies 14
Last reply 7/19/2016 - 12:07am
Replies by: Beehappy, B_Hutz, MoiraM, Anonymous, Ed Williams

I am a 43-year-old male that was first diagnosed with melanoma in 2009.  I had an in situ melanoma (.7mm Breslow thickness) removed via WLE. I was followed by my dermatologist and oncologist for the last 6 years.  In June of last year, my dermatologist felt a swollen lymph node under my left arm and I had an axillary dissection in August.  1 node of 16 tested positive for metastatic melanoma and was staged at 3B.  I developed lymphedema shortly after surgery and I have been working with garments, a pump, and OT twice a week to try to keep it between stage 2 and 3.  

 

I started 10mg/kg Ipilimumab infusions in early November.  The last infusion I received was on New Year's Eve, which was my 3rd.  In early January, I was hospitalized with hypophysitis and treated via intravenous high dose steroids.  I was sent home on hydrocortisone, but was hospitalized again when the pituitary headaches returned.  I was given more high dose steroids (120mg) and have been on them trying to taper basically since January 5th.  Each time I reached the end of the taper and transitioned to hydrocortisone, I had major issues.  

 

Over the past 6 months, I have been fighting the ipi side effects and also the side effects of all the meds that they are giving me to treat the ipi side effects.  I have been diagnosed with Ipilimumab-induced hypophysitis (swollen pituitary gland), Prednisone-induced pre-diabetes, Ipilimumab-induced hepatitis, Prednisone-induced hypothyroidism, Prednisone-induced hypomania, and my former 20/20 vision is now a mess from the HD prednisone.  My endocrine system is non-functional, but I hope that it regains some function when I can finally be done with the steroids.  

 

My last MRI showed that my hypophysitis had resolved.  That is good!  My liver has been the last to cooperate.  At the end of all but my last my tapers, I have been hospitalized or placed back on high dose steroids to try to get my counts to drop to normal levels.  I finally was able to get off of the prednisone on 6/5/16.  I am now taking 20mg of hydrocortisone in the AM and 10 in the PM.  In addition I am taking Cellcept to try to keep my liver enzymes down.  

 

I have had a ton of CT’s and MRI’s over the last 6 months.  All have been checking on areas where I have had all the side effects to try to find the problems.  They have all been clear of mets. That is something to be very happy about, and I am.  I will not receive any more ipi infusions due to the toxicity that occurred.  If melanoma returns, my oncologist will look at a different treatment option.

 

My major issues right now are the edema, swelling, pain, and weight gain that no one can seem to help me with.  I went from running 5 full marathons and 6 half marathons 2 years ago, to gaining 60 lbs of swelling in 2 months.  I am eating clean and doing my best to move with difficulty, but I am not able to get the miserable swelling to decrease.  My oncologist blames everything on the prednisone.  I was just diagnosed with 3 superficial blood clots in my right leg that I am treating with Lovenox injections in my stomach twice a day for 3 months.  I was also diagnosed with Meralgia Paraesthetica that makes it tough to sleep.  

 

Has anyone out there experienced some similar side effects of ipi?  If so, I would love to hear from you.  I still believe the ipi is very active in my body, as it has shown with my liver and causing all of this swelling.  I know that side effects can continue to show up for a year after my last treatment, but this one thing after another is getting very hard to handle.

 

My thoughts and prayers are with all of you!!

Login or register to post replies.

keepthefaith11's picture
Replies 26
Last reply 7/6/2016 - 8:22pm

So really bad news. My had had the MRI today even though they could not complete it due to him not cooperating. They were however able to see he has 13, yes, 13 brain mets of varying sizes...

Please, someone give me some guidance..
WHAT do we do now...

Annie

Login or register to post replies.

Pages