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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Laurie from maine's picture
Replies 7
Last reply 7/21/2011 - 7:04am

hi,

I just came back from hospital where I had a tumor removed from intestines which was causing a blockage.  The tumor removed from intestine was melanoma and scans found tumor in my liver and left lung  Brain mri showed all clear there..  I also am having strong pain in my left shoulder pretty constant so they re thinking it is in my bones there.  Met with Dr Lawrence mass general yesterday.  My tumor is being tested for Braf and that is the option he suggests we go if I test positive.   We will discuss what we do if I am not Braf positive, I believe they were leaning to ippilumb(sp?).  My husband and I are trying to absorb all of this. 

I believe Dr Lawrence is one of the best as far as being up on reseach and trials and am feeling that he can help guide us thru this.

any thoughts? I know it is real basic info, my family is currently overwhelmed as my baby sister is in hospital today having double masectomy and we are all trying to surround her and help her thru this, so timing for my melanoma to resurface stinks.

laurie from maine

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chet's picture
Replies 14
Last reply 7/21/2011 - 9:02pm

Hello everyone. It's been a good minute since I've posted anything on here so I thought I would update you on what's  been going on with me. Well, I wasn't really a responder to IL-2 so I started Yervoy in June. I'm the first person to receive it in San Antonio so they're watching me very carefully. I'll be getting my third infusion tomorrow morning. So far, so good. I haven't had any crazy symptoms, just the rash, but that is managable. It comes and goes. I was wondering for the people that were on Yervoy before and responded, about how long did it take to see results? I have no visible melanoma on my skin so I'm not able to monitor my progress. I only have one visible tumor and that's my lymp node right about my left clavicle. I honestly can't tell if it's the same or shrinking. It definately feels a little softer than before but I'm not sure if it's getting smaller. I've been lurking the board and seeing some others are on Yervoy, too. Best of luck to all you guys, y'all are def in my prayers everyday. 

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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Gene_S's picture
Replies 3
Last reply 7/20/2011 - 7:07pm
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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TracyLee's picture
Replies 16
Last reply 7/22/2011 - 5:21pm

Hi y'all,

I saw my surgical oncologist yesterday. He feels I'm NOT responding to ipi. My neck is very distended and he's quite worried that it has invaded my neck muscle and vascular vein.

I'm jumped to the top of the appointments list and see Dr. Sharfman and possibly Dr. Koch (head/neck surgeon) on Friday. CAT scan today.

I am so upset. Obviously I'll know more Friday, but doc feels I probably need IL2 (UGH) and radiation AND radical neck surgery.

Not in a good place right now, at all.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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gabsound's picture
Replies 11
Last reply 7/21/2011 - 11:48pm

I have a tentative plan to start biochemo in 7-10 days. I was researching last week about radiation and could swear I read something about an ongoing study with very good results when radiation was used before starting chemo or possibly biochemo.
Does this sound familiar to anyone?
I'm thinking it was being done in the pacific northwest.
If anyone has a source for this could you please post?
I need to get more organized about this searching I do online.
I found out my original tumor was at a Caris lab and us currently being tested for mutations as well as what treatments it may respond to. I'm hoping this cones back soon. It would be nicest have more facts to base treatment decisions on.
Welcome to our new posters.

Hanging in there in las Vegas,
Julie

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RMcLegal's picture
Replies 1
Last reply 7/19/2011 - 10:24pm
Replies by: Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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RMcLegal's picture
Replies 3
Last reply 7/20/2011 - 4:08pm
Replies by: RMcLegal, washoegal, Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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dodgedh2's picture
Replies 19
Last reply 7/21/2011 - 9:24am

I'm new to this board. I was diagnosed with Stage 4 melanoma (unknown primary) 3 years ago. Following a CT scan for an unrelated ailment, the doctor found a single tumor in my sacrum which was removed surgically and treated with a gamma knife. Since then, I have thankfully been NED. Although I am adjusting to this life changing event, I still worry that it will return. I'd like to hear from others who have survived Stage 4 and especially those who may have experienced recurrance. I'd like to know how long before recurrance, severity when it returned, and generally what I might need to expect. I realize that Stage 4 isn't good and I'm aware of the prognosis, however, I've heard of people who have been Stage 4 for decades and I'd like to hear from more that have similar circumstances.

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Anonymous's picture
Replies 15
Last reply 7/20/2011 - 7:03am

Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet - local area is not very aggressive with this type of cancer. I have appointments at Johns Hopkins and Sloan Kettering in the next few weeks. Looking for any suggesstions and/or similar situations and treatments you may have considered. Need to 'flip the switch' to positive thoughts as I am still consumed with fear, the unknown and not being here from my children who are so very young. Thank you for reading and thank you in advance to those that respond - God Bless.

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NicoleinVA's picture
Replies 10
Last reply 7/19/2011 - 3:25pm

Hello,

 

Let me start by saying how thrilled I am to find this community and all your insight.  As is says above, I am new to melanoma and very scared.  I am a 44 year old female with very few moles, however I did my share (and more) of sunbathing in my youth as well tanning beds for a 'heathly glow'..what was I thinking.  I recently me with a surgical oncologist after 3 months, with 3 very different patholgy reports.   I had a I  I ha

d I had a punch biopsey of a re-occuring mole (was removed in 2005 and classified as atypical) in April 2011 and was sent to plastic sugeon for a 2mm excision in May 2011, who sent his biopsey out to pathology.

This is where the nightmare started as there has been such a disparity in pathology reports (3 reports with everything from atypical nevi (Univ of VA), malignant melanoma in situ (Dominion) to malignant melanoma w/signs of early lymphatic involvement (Bon Seours)).   I cannot believe that the pathologists are looking at the same slide and can’t agree to the same diagnosis.  Is this common?  The site as .8 mm, with clear margins, no ulceration and now classified as stage 1a pending next surgery.  I've decided, with advice from surgical oncologist, it would be prudent for me to follow an aggressive approach because of all the unknowns.

I will be having a wide excision done by the surgical oncologist; a plastic surgeon will do skin graph on my leg (calf area) and then a sentinel lymph node biopsy will performed by a radiologist during surgery as well.  They have scheduled a PET scan, as well as blood work/chest x-ray.  Surgery is not set date yet as I have to get on both doctors schedules. I am trying to optimistic that this has not spread or is early, but it is still an emotional rollercoaster.  The recovery due to skin graph is scarring me too.

Any and all comments, experiences and suggestions would be greatly appreciated. 

Many thanks,

Nicole

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lhaley's picture
Replies 5
Last reply 7/25/2011 - 9:08am

Great news today!!  The lump that stopped the radiation and caused me much alarm since it was just 4 weeks after surgery was just fatty tissue!  There were actually 3 nodules so I was quite concerned. Just to show that lumps do not always = bad news!!!  That now makes me 6 weeks NED!

I start back with my radiation tomorrow and have some issues.  After just 4 days I had been blistering along the scar area on my arm. I'm doing radiation because the tumor was along the ulnar nerve and the surgeon was not able to get a margin on that side.  When I had my original consult in Charlotte they told me that side effects would be minimal. A low dosage would be used to not damage the nerve. Most I should experience was a sunburn in the area. I am being treated locally and the Doctors originally all talked. 

I know that the local tech at least lied to me. They put on a bolus and when I asked what it was I was told that it was to protect the skin.  I had dinner the other night with Debbie from Va (she was in the area for a music camp smiley). When I told her about the blisters she asked me about the bolus. I had no idea!!  When I looked it up on the internet I realized that it is used to give the surface skin the same effect as the deep tissue. The info I got basically guaranteed blistering! I'm worried because I am allergic to most antibiotics including topical ones. Infection always puts me at a high risk because of my intense allergies. 

When I spoke to my Oncologist today he could not advise. They told me to ask lots of questions tomorrow and to voice my concerns. They are starting back so quickly that I don't have time to call the radiologist that I originally consulted with. I will call him in the morning but doubt I will get a callback before I go. I realize that changes can be made for the next day.

I know this was long and I apologize. My question for others who have had radiation on a scar line. Did they use a bolus (looks like a gel pack), should it be sterilized between patients, and what side effects did you get from it? I have 20 more treatments to go.

I'm happy with my news I got today but am concerned about radiation issues,

Linda

Stage IV since 06  NED for 6 weeks!

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awg's picture
Replies 18
Last reply 5/12/2014 - 11:59am

Today was my first Interferon treatment. The day started at 8am with Oral Compazine for nausea, ibuprofen, 25mg IV Benadryl, 1000mL or normal saline for hydration, IV Zofran for nausea and finally the Interferon. The entire first day process took about 4 hours but should now go a little faster since I have one in the books.

I felt pretty good until about 4 hours after the treatment ended. I experienced all the FLU like sysmpoms, have a low grade fever. I did expel my lunch but I really think that was my fault for eating the wrong lunch. I will not make that mistake again. The worst part was the joint pain, chills and very mild shaking while felling hot. The worst of the symptoms (I hope) went away or deminshed in about 2 hrs and 30 min. 

I know everyone feels different during Interferon but I wanted to share my 1st experience since I have noticed many recent post about Interferon.

It is a very personal choice and I spent alot of time researching the subject to make a decision I was comfortable with.

I want to thank my family for all the worderful support and everyone on this board for all the information and your willingness to share your experiences.

 

Allen

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Today was my first Interferon treatment. The day started at 8am with Oral Capizine for nausea, ibuprofen, 25mg IV Benadryl, 1000mL or normal saline for hydration, IV Zofran for nausea and finally the Interferon. The entire first day process took about 4 hours but should now go a little faster since I have one in the books.

I felt pretty good until about 4 hours after the treatment ended. I experienced all the FLU like sysmpoms, have a low grade fever. I did expel my lunch but I really think that was my fault for eating the wrong lunch. I will not make that mistake again. The worst part was the joint pain, chills and very mild shaking while felling hot. The worst of the symptoms (I hope) went away or deminshed in about 2 hrs and 30 min. 

I know everyone feels different during Interferon but I wanted to share my 1st experience since I have noticed many recent post about Interferon.

It is a very personal choice and I spent alot of time researching the subject to make a decision I was comfortable with.

I want to thank my family for all the worderful support and everyone on this board for all the information and their willingness to share your experiences.

 

Allen

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alexandra's picture
Replies 13
Last reply 7/27/2011 - 8:57pm
Replies by: alexandra, bcl, Janner, Anonymous

Hi -

I got my results today. The doctor's office said melanoma stage II. She said that I should come in today to see her. Unfortunately I'm away from home and can't make it until next Monday. The doctor was totally fine with that and said that I can come in even in 2 weeks. They couldn’t tell me any details over the phone and the only thing they said is that this is a very early stage. Now, I'm schedule for an appointment for next Monday and the doctor said that I'll have more skin removed. I'm worried, because everywhere I read they say that if it's a stage II I should have a biopsy of my lymph nodes as well. She never said anything like that. She's also a dermatologist and I'm wondering if the second procedure shouldn’t be done by a surgeon. I'm sorry for asking so many questions, but I have a 2 month old baby and a 3 year old and I'm really worried.

Also, I'm from Canada and I'm wondering if they have different procedures. Like for example they don't refer you to a surgeon until a further stage.

Thank you so much for your replies!

Alexandra

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