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
Anonymous's picture
Anonymous
Replies 9
Last reply 1/4/2016 - 4:53pm
Replies by: mkirkland, Scooby123, AshleyS, gregor913, jennunicorn, Anonymous

I had my first infusion of ippi monday. My daughter was sick with a fever that week also. By friday night I started feeling ill. (99 degree ) By saturday morning 130am I woke up with a 101.5 fever with chills and sore throat. I do have alot of congestion too. Ive been taking ibuprofen where it will lower the fever then the fever will go back up. This morning I also noticed that the right side of my neck is a lil tender and slightly swollen. ( no bumps or hard lumps) I had a left axillary lymph node disection dec 1st. All 11 nodes negative. Any insight on ippi treatment will be grateful.

Greg

Login or register to post replies.

Rlukas79's picture
Replies 6
Last reply 1/12/2016 - 2:11pm

I dont have a history of Melanoma but I do have a history of a few moderately atypical moles.  I have had 9 moles removed over teh past 6 years.  Three of them were moderate and required further excision.  The others ended up being either normal or mildly atypical.  I know that atypical nevi may never turn into melanoma and you are more likely to find melanoma in a new lesion rather than an existing one.

I am 36 years old, male somewhat fair skin and blonde hair and blue eyes.  No family history of melanoma but on my fathers side, somewhat "moley".  In total I probably have between 30-50 moles.  Most on my lower half, with a few scattered on my back and a couple on my chest.

I have spot on my stomach that has been there for as long as I can remember,  It was always a light tan/almost yellow pigmented symmetrical spot.  I say spot because I'm not even sure it's a mole.  Anyway, 18 months ago I damaged that spot on accident when I decided it would be to use nair on my chest/stomach.  No problems with the first application but I added a second application.....after I took a shower to rise the first application.....HOLY MOTHER OF GOD, the burning was unreal.....About a few hours later, I noticed that pigmented area was red in color and had developed two ruptures inside the pigment.  A little blood etc.  It passed a skin check in Late July of 2014 but at the time was still healing and I'm not sure how long the doctor really took with it.  It eventually healed with a bit or redness to it, most likely scar tissue.  

A few days before christmas this year, my anxiety was on high alert but was due to other things going on in my life.  Somehow I became fixated on this spot.  My wife said that it looked no different than it did every month before that.  I'm not the one to wait things out and I immediately got in with a Dermotologist the next day.  The PA told me immediately that since I'm fair skinned her policy is to remove anything that looks questionable/irregular.  I told her about the history of the spot and what happened and she told me she was leaning towards it being okay but eyes can only tell you so much, which I agreed with no doubt.  I was told it could take two weeks to hear anything back and will only hear back if something is wrong (atypia, skin cancer).

I knew i was due for a skin check again but I decided to stop using the dermatologist chain of offices I was using and look for someone that is affiliated with centers that deal with skin cancers etc.  I know I dont have the history of skin cancer but I wanted to deal with a dermatologist that knows what to look for. I have somewhat of an increased chance due to the atypical moles I've already had removed.  I found someone who is affiliated with Robert Wood Johnson hospital in NJ.  I went for a skin check a few days ago and to my surprise I didnt have anything to remove.  Everything a had on me was normal except for one slightly mild atypical mole.  They used a new dermoscope that has a big lens in the middle and LED lights around it to better aid the doctor in looking at lesions.  That was a first for me.  

He saw the area that the other office removed the spot from and I told him I actually had pictures of it.  One from when I damaged it with nair and others from the last week.  He looked at the picture and told me wasn't even sure it was a mole and remarked that he didn't think it was melanoma either.  He also said a picture can only do so much as well.  

I guess I'm rambling here but in general do biopsies take that long?  two weeks?  I have to imagine if it were something malignant they would know sooner and let me know sooner.  My anxiety is getting the better of me here.  I've enclosed links with the picture of the spot that shows when I damaged it 18 months ago and what it looks like now under normal lighting and flash lighting from a camera.

If anyone has any advice for me, please let me know.  I know a lot of you are dealing with something way more concerning than what I am dealing with.  Im just a 36 year old guy with an amazing 3 1/2 year old daughter who wants to stay around for as long as God lets me.

From July 2014 - Damaged spot [URL=http://s837.photobucket.com/user/rlukas79/media/July%202014%20skin%20dam...

December 2015 [URL=http://s837.photobucket.com/user/rlukas79/media/december%202015%20heavy%...

[URL=http://s837.photobucket.com/user/rlukas79/media/december%202015%20heavy%...

 

The size is just about 6mm

 

 

 

 

 

Login or register to post replies.

mrsaxde's picture
Replies 4
Last reply 1/3/2016 - 6:35pm
Replies by: Bubbles, mrsaxde, kylez

I had blood work and a restaging CT scan done on Friday (my prior scan in September, after 3 doses of Keytruda, showed all my lesions slowly shrinking. Hoping for similar, or even better, results this time!)

But my question is about the "IG Auto" value in blood tests. I never paid much attention to it until I was looking over my blood test results, then I looked it up and found that it is a measure of antibodies in your blood. Mine was in the middle of the "normal" range.

Does that test only measure certain types of antibodies, or only naturally produced antibodies? That is my assumption, but I didn't know for sure and couldn't find the answer. I'm wondering because if it's a measure of total antibodies, I would think it would be off the chart if you're getting an immunotherapy.

What is off the chart in most of my blood work is my eosinophil count. This time that was almost double the top end of the reference range. I saw somewhere where they think that may be a marker for the effectiveness of immunotherapy, so I always hope that one will be high, and so far, it always has been.

Thanks in advance for any info you have on this.

-Bill

Login or register to post replies.

Lin P's picture
Replies 2
Last reply 1/2/2016 - 6:28pm
Replies by: Bubbles, emagdnim83

Hi.

My mom was diagnosed with Stage iii melanoma in the Christmas eve.

 

Now her state is..

 

● No primary lesion found.

There was a rash removed 10 years ago. There's a possiblity the rash was the lesion, but no evidence left.

 

● Numerous lymph nodes involved on her neck and shoulder. Oncologist says its unresectable because it's right next to bunch of blood vessels.

 

● She started Keytruda last week, and radiation oncologist will treat the lymph nodes with Tomotheraphy in a week.

 

 

The questions I have is..

 

● Is it common to use lower dosage of Keytruda?

My mom is receiving 1.5 ml/kg, which is less than the recommended dosage(2 ml/kg)

I am afraid if it may not be effective enough.

 

● Anyone with unresectable stage iii melanoma?

If anyone is fighting or have survived unresectable stage iii melanoma, could you share the story, how you were/have been treated?

 
● Is it Okay to take Selenium during radiation theraphy?

 

 

 

Any help, experience share will be appreciated!

 

 

 

I'm trying to stay positive but can't stop myself feeling doubt about everything including her medical team. There's NO DOCTOR WITH ENOUGH EXPERIENCE because It is very very rare case to have melanoma in my country. There's no statistics, no patients forum, nothing.

 

I feel very lucky that I can read and write English, and to have found here. I am really learning a lot from MRF. Thank you all.

Login or register to post replies.

jdpatterson2013's picture
Replies 3
Last reply 1/2/2016 - 2:57pm
Replies by: Janner, jdpatterson2013

I am 32 years old and have had several moles taken for biopsy over the last 15 or so years. A couple of weeks ago I had a mole near the back side of my knee taken for biopsy. This mole was approx 2 mm in diameter and had even borders. But it was very dark, but consistent in color. My derm had seen this mole before several times so Im not sure why he decided to take it off.

The biopsy came back as "Pre cancerous". My question is this the same as being Atypical?

Also I was told after the full excision that the tissue will be sent to pathology. But if it was already said to not be melanoma in the initial biopsy then why is post excision pathology required? Should I be concerned or is this routine for Atypical mole excision?

Login or register to post replies.

Wifeof1's picture
Replies 1
Last reply 1/2/2016 - 10:37am
Replies by: Janner

Hi, everyone. I'm so glad I found this forum.

My husband is 36 with a rare autoimmune disease called CVIC, we have 3 young children, and we recently moved across country where we know nobody. We moved here in summer and DH (dear husband) had a mole on his lower back near the spine that started to protrude. Within a month or two it was about the diameter of a nickel, bluish-grey, and started bleeding. He had it biopsied beginning of November (took us a while to get him in with needing referrals, etc) and within a few days they called us back. Melanoma, aggressively deep, 3.9 mm, ulcerated, and high mitotic rate. 

It took another 3 weeks to see the surgical oncologist at what is supposed to be the top melanoma center on the west coast with one of the best doctors (he is great, but we are used to a more personalized, small town standard of care where the actual doctor calls back with results in a timely manner). 

Doc decided due to presentation at initial biopsy, PET scan was to be done before SLNB. I had to call the office for results and they called him back. PET showed uptake in lung, chest CT scan was schedule for a few days later. Again, we had to call for results and CT was inconclusive but nodule was in upper right quadrant and didn't look like  melanoma.

Primary melanoma was on the trunk in a spot where the oncologist said it could spread to either armpit or groin lymph nodes.

SLNB was on the 18th. Once again, were told results would be by Christmas Eve. DIdn't hear back. I called the 28th as soon as offices were open again and they called DH back with the news that BOTH armpit and groin lymph nodes that had been removed/biopsied were positive for melanoma. He didn't ask the right questions, though, and they didn't give many answers. This was Monday. It is now Saturday and we go in this coming Monday (the 4th) for follow up with the doctor where I'm sure we will know more. Nodes weren't palpable and didn't show any evidence of disease upon extraction, so that is good news - but I am wondering if this will be considered stage 3 or 4 because it has spread to two different spots. The chest CT scan will be repeated, too.

Has anyone had experience like this where primary was on trunk and it initially spread to two different areas? And it is now beginning of January - two months after initial diagnosis - and we still don't know what stage or have many other details. Is this common for a big city melanoma specialist? It's just so frustrating. The emotional struggle is taking its toll and like I said, we have no family within 3000 miles so it's been tough with the little ones.

Thanks in advance for your help. I'm sorry everyone is going through this, yet I'm glad there is hope with new treatments and a forum like this where we can share experiences. 

Login or register to post replies.

Cinthia16's picture
Replies 4
Last reply 1/5/2016 - 12:59am
Replies by: Anonymous, AshleyS, Donnasue0611

Hi my name is cinthia 

I got diagnosed with melanoma 3 weeks 

Ago am 7 months pregnant, even tho the doctor said it was caugth on time im so scared that it has spread i dont want to leave my daugthers alone. The doctor told me i have to do check ups every 3 months for 2 years 

Login or register to post replies.

WallyE's picture
Replies 10
Last reply 1/3/2016 - 1:12pm
Replies by: _Paul_, mjanssentx, WallyE, jennunicorn, Anonymous, Linny

Good morning all and a very happy new year to you all.

I have posted under various topics in the past but I now need new advice, which will get lost if posted on a previous topic.

I am due to commence with the subject treatnment within the next week or so. Just waiting for my Medical Aid to authorise it.

I have googled the treatment but it seems to be quite intimidating.

I would like to know if anyone who has had this treatment can spare a moment and tell me what they experienced and whether or not it is as bad as they say. As it is I am having quite a hard time adjusting to being without a stomach in terms of nausea etc so not sure if I can handel another load of the same discomfort.

Any input will be greatly appreciated.

Kind regards

Wally

One day at a time.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 10
Last reply 1/28/2016 - 7:41am

Just wondering what to expect for my upcoming ipi/nivo treatments. I have heard some people respond without many side effects and some with quite a few. I was diagnosed 7 years ago with a melanoma mole on my right thigh, removed it surgically with very large margins. 5 years later a lump within the same region showed up. Again, surgery very similiar to the first. At the time interfuron was an option or observation. I decided to observe. 2 years later (now) I had a lump in front of my right ear biopsied and it tested positive for melanoma. A subsiquent PET was done and one other tumor was found in my abdomen under my liver on the messentary wall about the size of a softball. Wow have things changed. Anyone else have any similar situations? Just looking for some info as not much is to be had thus far.

FYI, I was originally supposed to start on a clinical trial a couple weeks ago in Portland Oregon. It was a combonation of Ipi and IL2. Just prior the insurance company denied the treatment and said they do not support clinical trials. It sounded like quite the 1-2 punch but I hope the ipi/nivo takes hold.

Thanks so much for listening. Scott.

Scott 

Login or register to post replies.

fleurdelis82's picture
Replies 2
Last reply 12/31/2015 - 4:51pm
Replies by: fleurdelis82, Janner

I recently had three moles biopsied, and the dermatologist called to let me know that everything is benign and no further treatment is necessary. However, the biopsy report got me worried. Please help me understand: 1. What it means; and 2. If there is any danger in case the moles come back. I am especially concerned about mole A as it already seems to be darkening in the biopsy site. Also, even though it says clear margins, it seems like a tiny spec of brown pigment have been left behind. I would like to know, in case moles A and B recur, if they need to be re-excised, or if anything else may be necessary.

FINAL DIAGNOSIS
A. Skin, right navel: junctional melanocytic nevus with moderate dysplasia and melanopgahes. The margins are clear in the planes of section examined. Note: stain for melanin A is positive.
B. Skin, right lower abdomen: junctional melanocytic nevus with moderate dysplasia. The margins are clear in the planes of section examined.
C. Skin, right thigh: solar lentigo.

Also, moles A and B looked very similar and were located in the same area on my stomach. I have two smaller moles that look very similar to those. So I am assuming those smaller moles may also be atypical? Do I need to have them excised as well? Will it reduce my melanoma risk?

view full

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 1/1/2016 - 12:10am
Replies by: Anonymous, jennunicorn, kathycmc, mkirkland

I was diagnosed with Stage 3 nodular melanoma in April 2015. I had first sugery in May of 2015 and second surgery to remove all lymoh nodes in July 2015. My oncologist told me that even if I do the treatments, I still have a 60% chance of it coming back, so I chose to do nothing. Here is it December 2015 and I now have in-transit metatasess around the original tumor site. I go back to oncologist on January 7 to discuss treatments. I am sure that she will offer me the same treatments as before which are either Interferon, Peg Interferon, or Biochemo. I have read so many things about all of them and I have NO IDEA what I should do. Can anyone tell me if they have had to make this decision and what decision you made? How it went for you and if it helped at all. I'm to the point I just want to ask her to take my whole darned leg instead of having to do these treatments. Any help would be great. 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 1/2/2016 - 2:32pm
Replies by: mrsaxde, Eileensulliv, Jubes, Bubbles, Anonymous

I find that adding these posts are good for hope and to help others learn about the potential responses, timing, rates and so forth.

Here's my stats:  Dx stage 2 on 6/3/14 (mel on toe).  Dx Stage 3 on/about July of 2014 (SLNB - surgery to remove part of toe).  Did not do interferon - close follow up/scans every 3 months.

Dx stage 4 on 12/23/14 (severe discomfort in back, chest and shoulder).  Scan revealed mets throughout chest bone structure including breast plate, ribs, back and spots on left leg.  Mets on liver.  

Treatments:

Xgeva:  Jan to present

Ipi:  Jan-April 2015.  Limited response, but growth of mets - Significantly reduced pain related to bone mets. 

Keytruda:  April - Present.  

Scan in July 2015:  Stopped growth.  Significant sclreosis of bones and potential new bone growth.  No pain.  Still some uptake of tracer in bones.  Liver mets appeared slightly larger but difficult to tell.

Scan in October 2015:  Still not significant growth.  Major sclerosis and photopenia in bones - could be reaction of Keytruda/Xgeva killing mets and building bones back up.  Stil some tracer uptake w/ bones. Suggestive of partial response.  Liver mets appeared slightly larger but could be inflamed. 

At this point, Doc insisted on continued treatment.  

Scan in December 2015:  Same results for bones, but no more uptake.  All tracer uptake at normal levels.  No uptake on liver - no mets noted.  Suggests complete response to therapy.  NED.

As of right now, I'm NED and my wife and I are thrilled.  We went through a long process to get here and were very fearful as each scan passed w/o reduction to the liver mets that we would never get here.  Liver mets are noted to be difficult to eliminate and most keytruda responders seem to come quickly.  But, we proved to be quite different.  

It's a good way to start 2016.  

Login or register to post replies.

bonusfries's picture
Replies 4
Last reply 12/31/2015 - 5:29pm

I had progressed while on BRAF + MEK (2cm adrenal mets), and since the new growth was limited and small, we did the 4 infusion cycle of ipi starting in the beginning of August.

An interview I had read from Celeste's blog said most people who progress on BRAF don't respond to ipi, so I did not have high hopes for this treatment.

My last infusion was on October 9th. While my side effects were rather impactful, my blood work and overall health were good throughout so we waited as long as possible for follow-up scans.

My follow-up CT shows no traces of the mets, nor did it find anything new! The side effects were well worth that radiology report.

Clean scans for all in 2016!

Jeff

Just do it

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 12/31/2015 - 7:15pm
Replies by: Bubbles, LASS

My husband was diagnosed with melanoma in 2010. His melanoma was found in a cyst on his head. He had surgery, a skin graft, sentinal node was negative. He had a satelitte met off from the primary. He did a year of interferon and had radiation on his scalp. He was NED for five years. In September of this year, 2015, they found multiple mets in his liver. He is BRAF negative. He is 47 years old and otherwise very healthy. He got into a clinical trial for yervoy and opdivo. After 3 treatments (the day before the 4th treatment was scheduled) he had a scan that showed the tumors had not responded to the treatment. The tumors were growing rapidly. They had spread throughout the liver. Numerous mets in both lobes, the majority being the left lobe. Mets had also spread to the mesentery membrane. 2 small mets in lungs. His LDH levels were 2443. His oncologist admitted him to the hospital to get taxol/carbo in him right away in hopes to slow the rapid growth. He has had one treatment and will have another on Jan. 8th. We saw his oncologist yesterday (dec. 30th) the swelling in his liver seems to have gone down. He feels tired, discomfort in abdomen, of course. He has lost a little over 20 pounds. He is very strong, works still partly from home. His oncologist referred us to Dr. Salama, a high risk melanoma specialist at Duke. We live in SW Virginia. Does anyone have any opinions about Duke's melanoma center or any other advice to give? Thank you for your support. Prayers to all of you who face this terrible disease.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2016 - 1:06pm
Replies by: Lil0909, Anonymous, mjanssentx, Cee, Becky

I have read a lot of people are against in and saying people are a fool to do the treatment 

 

I was given 3 options 

wait and watch 

interferon

yervoy

 

i had choosen interferon because I don't want the long term effect damage from yervoy like liver damage tyroid problem etc etc..  

 

I am am just wondering for those that was on interferon treatment what side effect was the most problem and did you really loose a lot of hair?   What is the best advice to get through the hard treatment, what help keep you immune system up etc..   Please don't call me a fool I am just asking for some advice and hear from other that was on it.... All that matter is we are all fighting in the battle and asking for the same support,,, 

 

thank you and my thoughts are with all of you 

Melissa 

Login or register to post replies.

Pages