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
mygirlmaddy's picture
Replies 9
Last reply 8/17/2011 - 2:00pm

My husband is stage IV with 3 subcutaneous and1 internal tumor.  We have tried IL-2, Ipi, he is B-Raf wildtype, and does not qualify for TIL due to a steroid dependency thanks to side effects of the Ipi.  He is undergoing radiation to try to shrink the tumors and our oncologist at home is recommending Temodar after radiation is done.  She has been clear that neither radiation or Temodar are consider cures.  Does anyone have suggestions about treatments not mentioned here?  I am at a loss.  My husband's records have been sent to NIH by our oncologist in Boston  and came back with no suggestions.  I don't want to look back at this and feel like we didn't do everything we can.  I can't think of a more knowledgeable bunch than those of you in the thick of it with us.  Thanks for any suggestions.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

Login or register to post replies.

Angela C's picture
Replies 3
Last reply 8/17/2011 - 11:55am
Replies by: Jan in OC, kylez, Angela C

Hi everyone.

I will be having sterotactic radiation for a 2-3mm met in my brain. I am having it at Loyola in Chicago and they have a Novalis machine. I'm a little freaked out about the procedure and the frame that is attached to my head.

I'm hoping that those of you who have experienced radiation with Novalis can give me some info about your experience. I don't quite understand how the head frame is attached. Does it hurt?

Did they give you anything to help you relax? I do okay with my CT and PET scans, but I'm a little freaked out about having a cage attached to my head all day and wondering if I need to get an anti-anxiety pill that day.

I'm told that I will probably lose some hair because the met is very close to the top of my head. Did you lose hair? How much and how quick did it grow back?

This is the first time any

Be kind, for everyone is fighting a great battle. -Plato

Login or register to post replies.

ockelly's picture
Replies 1
Last reply 8/17/2011 - 10:43am
Replies by: DeniseK

My husband has just hit the half way point in his Interferon year.  One of his most nagging side effects is a constant ache in his lower back.  He gets so much relief from a new heating pad that we ordered online that I thought I'd share the info.  Its a moist heat.  He goes immediately to it after work everyday.  

Thermophore Deep Heat Therapy Pad     800-253-0854

Its expensive (about $100) but has been so worth it to him.


Login or register to post replies.

Replies by: AlanM, Lisa13

Over the summer I have received high dose(50 grams) vitamin C infusions twice a week. Last week I stopped because I was concerned about possibly multiplying the GI effects of ipi by taking the vit C. (I have my first ipi infusion tomorrow) The problem is that I am definitely feeling less energy and overall more poorly after stopping. Has anyone here had the Vit C infusions while also taking ipi? If so, any info on how the two coexisted would be appreciated.


Login or register to post replies.

hello everybody,

i dont have any news but wanted to post smth!there is not a day that i m not here!all of you are giving me hope and streght.even thow, i feel like i m running out of time, i feel that i dont have enough time to do things that conclude my mother in.i want to get married and have children and i want my mother to be there!to be happy!i want o "hole" lifetime with her not just a part.....i dont want to be selfish, i just want her next to me, to share with her everything.if i am away from home i m callingonce a day to she if she is ok, i m thinking all the time that smth will happen..

before one month we found out that she has 2nodule (3mm and 4mm) stable at her lungs (we didnt knew that they was there until the doc told as that they were present and at the previus ct, three months before) and the ond said that meybe isnt smth.The oncologist t  hought that have palpate a lump at her neck but she did an ultrasound and there was nothing.Although athe arm with te full axilary disection, she dosent have lemphydima, but she has pain near her breast and its swollen when she wears a bra, the doc said that its from the oparation and it want time to heal.


so NED!!!!!!

i m so thankefull to all of you, if you werent here i must had gone crazy for sure!

best wishes to all of you, you are in my prays



Login or register to post replies.

gossteach's picture
Replies 8
Last reply 8/17/2011 - 12:05am

Seems to be quite a few people starting interferon in the upcoming weeks. Maybe we could se up a time to "chat" with those who have been through it. I've only done the chat thing once, but it might be a good way to support eachother. Any takers?

Login or register to post replies.

I've not posted for a long time, but I've been on MPIP on and off since 1997.  I was stage IV NED for 10+ years, until diagnosed with multiple bone mets and sub-q 3 months ago (boo hoo - but that's life).

I went to the Angeles Clinic to see Dr. O'day, and after positive typing for BRAF, I was randomized to the BRAF/MEK combo trial (with the highest level of MEK).  I have been taking the drugs since last Thursday, and so far zero side effects.  I'm just wondering, for those of you who are on BRAF and/or MEK, when did any side effects begin?  We're going on a cruise next month, and I certainly don't want any nasty stuff happening then.

Thanks in advance for your responses,


Too ugly to die!

Login or register to post replies.

mclaus23's picture
Replies 4
Last reply 8/16/2011 - 7:43pm

Hi All,


My dad, Stage IV mel with mets in the adrenal glands, began ipi 5 days ago. He is in extreme abdominal pain and had night sweats last night. Dr says this is an indication the ipi is working. Has anyone here had  this experience?

He also said the tumor on his groin is slightly inflamed and sensitive to touch.


Thanks in advance for your input!


Login or register to post replies.

Becky C.'s picture
Replies 7
Last reply 8/16/2011 - 6:07pm

Hi, I was hoping to get some more feedback from anyone who has had a groin dissection.  I heard from one person who said they did get lymphadema. I am planning on having the surgery next week, I am really worried about lymphadema but i think it is the only way to know if all the cancer is gone. I have read that about 10 to 15 percent of patients who have this done get lymphadema. I appreciate any feedback.

Login or register to post replies.

nicoli's picture
Replies 10
Last reply 8/16/2011 - 1:28pm

I may be the newest stage 4. saturday I had trememdouspain in my side/back and within one hour was in ER.  Everyone thought it was a kidney stone, so did I cuz I had had one before.

CT showed mass on adrenil  glands which sit on kidney. Also possible lung nodules. I spent sat and sun drugged out for pain relief. Today, MRI and CT. No results yet but those who saw the ihitial reslts have no doubt. Waitig for the official word from my onc.I will cry for awhile and then make a plan.


Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

Login or register to post replies.

ccbreeding's picture
Replies 1
Last reply 8/16/2011 - 12:00pm
Replies by: Janner

I was diagnosed almost four years ago IIIA.  My original site was on my shin.  I had the LND and have been NED ever since...Praise God!  I was "friends" with Amy Busby and oh how I miss her!!..I remember her mm came back after being NED for 6 yrs and it first appeared in her various lymph nodes.  So this is one reason I am concerned.  

I have one slightly enlarged node in my neck (assuming it's from allergies).  When I feel under my arms I feel several nodes...I can only feel them when I use the same hand as the arm vs reaching across my body.  This seems a bit weird.  They are not huge, probably the size of almonds??  My next check up is in Oct...cant decide if I should just wait or look into this sooner.

Anyone have any experience with enlarged nodes?  What did they feel like?  Where else would I notice nodes?  Sorry this is so wordy:)

Thanks for any insight!

Login or register to post replies.

Ashykay's picture
Replies 6
Last reply 8/16/2011 - 9:41am

Hi all,

Just thought I would provide an update after my Mum's oncologist appointment today.

All in all, it's not great. The oncologist would like to keep her CT scans to ensure that the growth didn't actually occur prior to the radiation, and whether or not the radiation has affected the density of the tumour, although this doesn't appear to have reduced the tumour on the outside. I think realistically we can take from this however that the tumour has grown and radiation wasn't successful at all. We are praying to be proven wrong.

Options from here on - although Mum's biopsy tested negative to c-kit positive gene mutation, the oncologist seems to still be pushing the Gleevac due to the c-kit staining. Dad and I tried to raise some immunology treatments such as Yervoy with him but he was incredibly dismissive of it and recommended Gleevac still. He back pedaled again then by saying that he needs to get access to the drug - he had basically guaranteed us weeks ago that this would be accessible, even if Mum didn't have the biopsy tested for c-kit positive. Quite po'd at this. He has recommended us to an immunologist to see what his opinion is, but he was very discouraging of this approach due to teh side effects involved with immunology drugs (which I understand).

Dad and I have concluded that he oncologist takes the safe approach....he was disinterested in any experimental treatments, trials and the like. Dad and I will continue our search...we're going to try another oncologist - our aim is to find someone who is willing to go out of their way to help us find something (be it experimental or not) and be more aggressive with respec t to treatments. We really don't have any other options.

I suppose then we will consider whether a move to the United States could be considered on the basis of the trials they have going over there....hopefully Dr Hodi will get in touch, even if we could teleconference options or approachs which we could try access through Australia.

Anyway so that's my update. I'm not sure what to say to Mum at the moment...Dad and I are speechless. I had a good cry when I got back to worka fter the appointment, and trying to move on now as best as I possibly can.


Login or register to post replies.

grungle's picture
Replies 7
Last reply 8/16/2011 - 9:17am
Replies by: MichaelFL, jag, Cooper, FormerCaregiver, Anonymous

Hi all

My wife has scondary melanoma of her liver, primary originally ciliary body melanoma.  Laparoscopy in March showed it was melanoma, although she has also had breast cancer in the past. She is braf negative.She has multiple tumors in her liver, but  none elswwhere at the moment. Because it has been slow moving our onclogist has advised us to play waiting game befoe he put her on Dacarbazine.  He is very vague about the use of yervoy in Queensland. During her yearly check up with her opthamologist, he advised us to try and get her on yervoy asap, which means she has to have failed another chemo first, hence the reason we are going on Dce.

Our oncologist maintains no one in Queensland is administering yervoy .  I know peter mac is using it, i have contacted them a couple of times. Does anyone have any information on how,where we could get it in Queensland?  Also any idea if/when it goes on the PBS list what the a ball park cost figure might be. thanks.

Login or register to post replies.

Eileen L's picture
Replies 9
Last reply 8/16/2011 - 3:57am

So a few weeks ago I posted joyously that I had stable scans again, almost four years post-Stage IV diagnosis. This weekend I noticed that I have a swelling in my right groin which I know may prove to have nothing to do with melanoma, but then again it may. First action this morning was to get on the phone with my doctor's office, I have an appointment tomorrow at 3PM. I know this is a very rapid response to my concern, but I really, really, really wanted to have him check it out today!

So because I have to research everything before I walk into my oncologist's office (that is just who I am), I am wondering what would be a reasonable course of action for him to take, given a stable CT scan two weeks ago.My onc is a generalist at Kaiser SF and he is an excellent oncologist, but not a melanoma specialist. Whenever I have a specific concern/question I pay out of pocket to see Dr. Daud at UCSF's melanoma clinic, and I am trying to get an appointment with him for later this week.

Any thoughts? Would a PET scan be next? Perhaps an ultrasound of the the right groin to see if there is actually a swollen node there? If there is, a biopsy? I may have to push my Kaiser doc to be aggressive with this one, although with the FDA approval of ipi (I will never remember the name they are now marketing the drug under) I may have better luck at getting him to order what I think needs to be done since he now has a treatment option for me!

Thanks to everyone for your good wishes after my scan results. Hopefully I can post again in a few weeks that this swollen groin think was a false alarm, but if not I am ready to fight the fight and beat melanoma down once again!!!!

Eileen L

Stage IV





Login or register to post replies.