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 Rick,I cannot describe what I feel! This is absolutely astounding and great! Thank you: thank you so much. I don’t know what to say: It's another year and I'm still cancer free after some years I think I’ll have to let this fantastic news “sink in” in my brain a little: I’ll keep on thanking you again and again.It's like Magic i am CANCER FREE I have never been more amazed and happy in my life! Contact him directly at his email: ricksimpsoncancerresearchcure@gmail.com for your own oil.
May GOD Bless you all! Yours truly,
Novoa Mendez

Login or register to post replies.

 The Lap-Band procedure, though safer, has slower weight loss than new forms.Also, your exercise routine and the foods you  Genius X eat will with be responsive your weight loss result. It is essential to follow the diet plot unconditional to you and to exercise mysterious for the maximum weight loss. Most patients can expect to lose just very more or less 36 percent of their excess body weight within the first year.  http://eremaxfuncionabr.com/genius-x-farsa-ou-falso/

 

Login or register to post replies.

keepthefaith11's picture
Replies 4
Last reply 2/12/2016 - 10:59pm
Replies by: Anonymous, Bubbles, Johnjk04, gregor913

My father started Yervoy today. Nice to get the ball rolling. When speaking to his onc last week she said radiation was in the treatment plan and I mentioned reading about doing immunotheraphy and radiation simultaneously. At the appt. this week she agreed that would be a good way to proceed. They are currently working on the mapping for radiation and as soon as that is done radiation will start. Does anyone have experience with combining the two treatments? Seems there are some good studies saying this could be a benefit.

My father is stage 3C with extracapsular extention in 2 nodes, and micromets in 2.

Thanks!

Annie

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 2/12/2016 - 10:50pm
Replies by: Anonymous, Scottw, JuTMSY4

My wife is currently Stage IV and has recently completed her fourth round of the combo. At her recent CT scan, about 15 weeks into treatment, she had mixed results; some spots stable in lungs and liver, but several new spots have appeared in the skin. From discussing with our doctors, most response is occurring within the initial 12 weeks or so. I was wondering if anyone here on this combo has 1. had an experience where it took longer for the treatment to have an effect and 2. experienced new spots appearing before the drugs began to work? We are investigating other treatment options and trying to determine how long to continue with the combo before trying something else.

Appreciate any insight you can share on your experience being on the combo.

Login or register to post replies.

DZnDef's picture
Replies 21
Last reply 2/12/2016 - 1:02pm

My brother was just diagnosed Stage IV melanoma and is meeting with an oncologist Friday.  I thought he might appreciate seeing a roll call.  Please let us know when you were diagnosed at stage IV and how you're doing now if you don't mind.

I was Stage IV July 2012 but misdiagnosed until my recurrence January 2014.  Still have active mets but also still here and feeling good.  Anyone else?

Cheers,

Maggie

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

Login or register to post replies.

Hello!

First time posting here but I have been reading while we waited on our daughter's biopsy results.  I was wondering if someone could help me understand them?

The diagnosis is atypical mole but the description has me wondering if there was some question about it?  I don't know what spitzoid features and architectural disorder means; Googling for more info just leaves me confused.

It started out as a tiny, tiny freckle and over the course of about six months, grew larger and changed shape and color.  We live in Houston and because of her age and the need to remove it under general anesthesia, we opted to have it done at MD Anderson.  I would like to feel confident in their assessment - and I mostly do - but also am looking for feedback from those who are more familiar with these words than I am.  It reads:

 

 

 

DIAGNOSIS

(A) LEFT GLUTEAL FOLD, SKIN PUNCH:
Melanocytic nevus, compound type with spitzoid features and architectural disorder, present at a peripheral tissue edge. Clinical-pathologic correlation is necessary to determine if this is part of a larger pigmented lesion.
Multiple step sections were examined.

This case was studied and discussed at the dermatopathology faculty conference.

CAP PROTOCOL ON PATHOLOGY MATERIAL REVIEWED IN THIS ACCESSION

N/A

GROSS DESCRIPTION

(A) GLUTEAL FOLD NEVUS - A tan-white punch of skin measuring (0.4 x 0.4 cm, excised to a depth of 0.3 cm). On the surface of the skin, there is a (0.3 x 0.1 cm) dark-brown possible pigmented lesion. The deep and peripheral aspects of the specimen are bisected. The cut surface is tan-pink and rubbery. Entirely submitted in cassettes A1 and A2.

BIOMARKER TESTING

N/A

CLINICAL HISTORY

Atypical nevus. 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 2/12/2016 - 10:04am
Replies by: jpg

High-Dose Interferon No Benefit in Melanoma With Single Positive SLN - See more at: 

http://www.cancernetwork.com/melanoma/high-dose-interferon-no-benefit-me...

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

Login or register to post replies.

amylou2581's picture
Replies 8
Last reply 2/12/2016 - 9:01am
Replies by: Momofjake, amylou2581, Jubes, Anonymous, JuTMSY4, melj

Hi all, I'm new to this sithe and so far am finding it useful!

My husband, Mick, is considering stopping his pembro treatments due to severe pain and side effects...
Here is his history :
Original diagnosis of melanoma on his scalp, removed 4 times and received radiation (left a very nasty scar)
3 monthly checks with nothing showing for just over 1 year.
April 2014, melanoma discovered on his lungs and liver. Ipilimumab is started quickly. After 3rd treatment Mick's pituitary gland has swollen causing severe headaches and blurry vision. The pituitary gland no longer works so is put on cortisone tablets. 2 weeks later Mick gets colitis and losses 13 kilos. Is then put on massive doses of cortisone which cause major swelling.
Ipilimumab has finished and they put him on pembrolizumab. Soon after he has severe sinusitis for near 6 months. He gets avascular necrosis from long term steroid use and needs a core decompression to his hip.

But now he is in such severe pain through his bones, joints and muscles that he is struggling to walk, shower, sit, stand or do anything!
He currently takes hi doses of jurnista, lyrica, oxynorm and oxycontin but still the pain is unbearable.

Does anyone have any information on what would happen if he was too stop the pembro?

Sorry it's such a long post, but thank you for any responses.

Login or register to post replies.

bajohnson02's picture
Replies 19
Last reply 2/12/2016 - 12:09am

Hi everyone..

I am 43 year old female, recently diagnosed with malignant melanoma located on top of my foot. It's a place that has been there for about 8 years. I was told by 2 different doctors who just glanced at it that is was nothing to worry about. So, I kinda brushed it off and let it go. In Jan this year I decided I needed to find a new family doctor, I showed it to him during my 1st visit and he thought we should biopsy it to be on the safe side and so that I could put it behind me and not worry about it anymore. The first biopsy was a small piece that came back as severely atypical melanocytic and recommended full biopsy. I went back in a week later to have the full biopsy done and received 6 stitches to close it up. That was on January 27th. I knew when I received a call from my doctor himself instead of one of the office ladies that it must be something serious. He proceeded to tell me that it was melanoma and was referring me to a surgical oncologist. I got a copy of my pathology report.. But, I am not so sure how to understand it. I feel like its been a roller coaster with my emotions since I got the call. I don't know what to expect or what the outcome is going to be.. I am scheduled this Friday with the oncologist for WLE and sentienel lymph node biopsy. From what I have read it won't be until after that is done that they will be able to tell me the stage. I am hoping that someone here can shed some light to what I am looking at, I will share with you some of whats on my path report. 

Superficial spreading

Clark's level 4

Breslow depth 1.4

Vertical growth (tumorigenic) Present

Host response- Brisk

Regression- Absent

Misosis- 1-2mm

Ulceration- Absent

Predominant Cytology- Epithelioid

The comment sections states- 

Multiple sections have been examined

Melanocytic marker shows focal prominent pagetoid dispersion. Cytologic atypia is prmoinent.

Ki67 stain show slightly increased activity.

Wider re-excision with adequate clear margins and staging, along with sentinal lymph node biopsy are recommended.

 

Any help in understanding what I may be up against would be so much appreciated.. my main concern it how long it has been there that it may have a greater chance of spreading. Thank you so much for any info. God Bless!! 

Login or register to post replies.

melanomabegone's picture
Replies 24
Last reply 2/12/2016 - 12:02am
Replies by: Anonymous, melanomabegone, jag, Joan C, Janner, LynnLuc

I just joined and this is my first post. When I register there was a place to upload a picture and I didn't know that it was supposed to be a picture of myself and I uploaded a composite picture of my melonoma treatment in progress showing the tumors shrinking. Is there a way to post pictures? Please assist.

Work with your body and cancer can be beaten.

Login or register to post replies.

gregor913's picture
Replies 5
Last reply 2/11/2016 - 8:50pm

I did two infusions of yervoy 10mg. Third is on the 15th. This week my skin seems to be more itchy but there is no rash. Mostly arms, legs, and on the palms of my hands. When you guys had the yervoy itch did you have a rash or just itchy skin. It's very tolerable now. Greg

Login or register to post replies.

5dives's picture
Replies 25
Last reply 2/11/2016 - 8:12pm

Hi all,

I am 46, stage 3b, NED since July 2014. I see the derm every 3 mos and onc every 4. I'm treated at Loyola in Chicago. My doc is not one to do scans, so I've only ever had one, in preparation for a second opinion at MSKCC.

My health has been great, but lately I've had several easily dismissable symptoms. My node scar area has been aching (hasn't before), but nobody can feel a swelling. Headaches more than usual, but nothing that would cause concern.

I have had a persistent and irritating cough for 3 weeks. Yesterday I kicked up a fever, went to walk-in care, and was diagnosed with walking pneumonia. No chest x-ray.

In my understanding, many of you who have had lung mets have had no symptoms. I definitely have a fever and a gross cough.

I'm seeing my onc tomorrow (regularly scheduled). Should I be asking for a scan, or should I let it ride? I'm am very aware that this is most likely anxiety on my part.

Best to all of you, 

Elaine

http://melanomadame.blogspot.com/

Login or register to post replies.

jennunicorn's picture
Replies 8
Last reply 2/11/2016 - 7:54pm

Had my 3rd infusion on January 25th. I continue to have very little side effects, yay! I know I am not out of the woods yet, but I am so glad that this is going a lot smoother than it could go. I continue to have fatigue, very manageable. I got a cold last week, so I am dealing with this annoying cough that is getting a little better every day, but still very annoying. The eczema flare ups on my hands has even gotten better. After the first infusion almost every morning I had to use my steroid cream to calm my hands down. Now, it is barely there. There was one morning last week that I had some diarrhea and worried that I was going to have to deal with that side effect. But, it only happened twice that morning and went back to normal, so must have been something I ate. I do hate that if something like that happens, I instantly worry that it's a side effect. 

I hope everyone else on ipi is doing well too and have manageable side effects.

Infusion 4 is next week, the 18th. Thankfully these weeks have been going by very quickly and I am looking forward to getting back to work full time and going on with my life, not worrying about my next infusion or whether what I am experiencing is a side effect that needs medical attention. 

Wishing everyone out there the best in their journey. 

-Jenn

Login or register to post replies.

DZnDef's picture
Replies 11
Last reply 2/11/2016 - 7:30pm

Hi all,

Can anyone list for me the various brain radiation techniques?  I've seen the following tossed around on this site:  SRS, WBR, Gamma knife, Cyber Knife (am I missing any)?  Are these all different techniques or are some of them just different names for the same technique?  Thanks in advance for your help!

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

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 2/11/2016 - 5:44pm
Replies by: ashley_K, amandabren711, AshleyS, Anonymous, Kim K

I was notified about the melanoma July 1st and this process feels like a rollar coaster.  I have not seen the dermatolgoist since I had the biopsy done June 25th and I'm scheduled for more surgery to remove more skin July 23rd and the melanona was/is on the stomach between my breasts and belly button.

1)  Is it normal to wonder if I could have more melanoma other places on my body?  The dermatologist only removed this one mole because it did not look like the others.

2)  Would it be within my rights to ask the dermatologist to remove more moles at that time to rule out anything suspicous?

Unfortunately I will be 36.5 weeks pregnant at the time of the wide local skin removal surgery and there is concern about the dermatologist not being able to close the site afterwards because my stomach is so stretched out.  The OB is concerned about if she opens the inscision during labor or a c-section (I am not planning on a c-section).

The high risk maternal fetal medicine doctor recommends they do NOT do the wide local incision to remove the skin until after the baby is born and he wants me to be induced at 38 weeks (baby is full term at 37 weeks).  However the OB saw the site again and is comfortable with the dermatologist taking the skin out (on the stomach).

The dermatologist told me that the pathology report states that they believe that all of the melanoma came off of me when the biposy was performed.  It was .34mm thick (so pretty thin) and very slow growing.  However, protocol dictates they remove more skin around the site.

Every doctor I have spoken with has stated that there are only a handful of cases where melanoma has passed to the baby, but because they have brought this up so frequently, it has started to freak me out.

Login or register to post replies.

Pages