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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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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triciad's picture
Replies 6
Last reply 7/18/2011 - 9:05pm
Replies by: triciad, MichaelFL, Janner

Hi Everyone,

I just got a copy fo the pathology report from last week's failed excision.  It's all greek to me, so if anyone understands this, please let me know what you think.

"Within the deep reticular dermis and subcutaneous tissue there are scattered cells with hyperchromatic nuclei that stain positively with S-100 protein.  The nature of these cells is difficult to determine as they altered by "crush" artifact.  Nevertheless, in the context of the previous biopsy from this patient, the possibility that these cells represent subtle infiltration of the tissue by metastic melanoma cannont be unequivocally ruled out.  An excision of this area is recommended.  There is no evidence of a cyst or lipoma in mulitlple levels of sectioning."

My concern is that when my dermatologist told me it was too deep for her to get...I was okay with that.  Now, it seems that she punctured it and took pieces of it to send to the lab.  Is it spreading throughout my body now?  How bad is this?

I have surgery on Wednesday morning and it can't come fast enough.

Thanks for helping me out with this...I'm freaking!

Tricia

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DeniseK's picture
Replies 9
Last reply 7/20/2011 - 1:03am

Hey Everybody,

I had my PET Scan and Brain MRI last week.  They both came back clear!!  Whew!!  I was referred to the Northern California Melanoma Center in San Francisco and I'm going this Wednesday to determine what kind of treatments I should do.  Since I'm stage IIC it's usually Interferon which I read works well on ulcerated tumors and decreases the risk of recurrence.  I still haven't seen an oncologist!  This is pissing me off because you would think my surgeon who's a general surgeon, Not oncology surgeon, should have referred me to an oncologist immediately following my surgery!!  Well I found out from Dr. Weber in San Fran that I'm missing the LDH and CBC blood tests!  It's basically too late for me to get these before Wednesday so he said he'd be sure to order them for me.  This is why I should have seen an oncologist!!  DUH!!  It's been 6 weeks since my surgery and I haven't had any blood work done!!  I was wondering what tests should have been done!  Anyway I feel so much better getting into San Fran to see specialists!  My surgeon is referring me to see an oncologist after Wednesday too.  I'll update on Wednesday or Thursday what they said!! 

Denise :)

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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Gene_S's picture
Replies 7
Last reply 7/24/2011 - 10:46pm
Replies by: nicoli, Gene_S, bcl, DonW, washoegal, Anonymous

Hi, It seems (to me) every time someone posts a question about

alternative treatments there is usually a suggestion to go to the

"Quackwatch" web site. Here is a link about the creditability of

Quackwatch that may be of interest to readers especially those

who are interested in using unconventional treatments.  See:

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

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manu000's picture
Replies 14
Last reply 7/19/2011 - 10:41pm

My girlfriend just before his 25 years was diagnosed with stage 4 melanoma metastases, has been affected to the brain and  lung and other lymph nodes, in the neck, in the abdomen and in the left leg.
She has already faced an surgery radio therapy (gamma kinfe) to the head and started a new treatment "ipilimumab+fotemustina (Muphoran).
The treatment effects did not know that they have, but it certainly she is not feeling well. Is losing its vitality and even his work with disabled boy start to have problems.
Someone has experience with this therapy?
I am believes that this is only a moment along our lives, and that we can overcome it.
I believe she is doing in therapy, but in the meantime I am also informing about various alternative treatments. You have experience about it?
I informed myself on the Gerson method, Di Bella.
Now, after reading his story, the journey to Ginny Fraiser (http://www.timesonline.co.uk/tol/life_and_style/article715413.ece), knew her history? what do you think about?

thanks to all

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Dynasysman's picture
Replies 18
Last reply 7/18/2011 - 8:52am

Got scan results back yesterday.  As good as we could have hoped realistically.  Stage 3.  Brain MRI negative.  The only tumor we found was the one that ultrasound-biopsy revealed in my left sternocleidomastoid muscle...and it was somewhat SMALLER (8mm in March, 5mm last week).  I see the surgeon tomorrow, ONC on Tuesday, and expect we'll start therapy a week from tomorrow (or sometime that week).

Life in the "New Normal":  isn't it amazing what we come to consider "good news"?

I hope each of us keeps getting the news we hope to hear...

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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JerryfromFauq's picture
Replies 17
Last reply 7/20/2011 - 4:40am

The pathology on the breast tumor I had removed on the 6th came back as benign.  Thanks for all your concerns and well wishes.

I'm me, not a statistic. Praying to not be one for years yet.

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Evening, all.

It has become apparent to Don and I that although he is doing better cancerwise, it's not going to be realistic for him to go back to work. This round of chemo is kicking his butt, and with some of the side effects I've read that one can get from BRAF inhibitors (his next step after chemo stops working), it seems unlikely he will improve enough for at least a while.

This leaves me with lots of questions that I'm hoping some of you here can give me some answers to, or at least give me some idea where I could get the answers.

Currently, our health insurance is through Don's work, which of course, will complicate matters considerably. His FMLA runs out about mid-August. I am going back to work this week to save up what's left of my FMLA, since he seems to be self-sufficient and my teenaged kids will be home.

I will have the ability to pick up health insurance at my work for the family once Don's runs out. The trouble is that the coverage is not nearly as good. Basically, it is 80-20 for all services. I am extremely concerned for a couple of reasons. One: I don't know if the insurance at my work will even insure him due to his illness. Is that one of those things that Obamacare outlawed? Two: Frankly, we cannot afford to put Don on an insurance policy like this. In May alone, we wracked up $100, 000 in medical bills that were paid in full by our current insurance. Paying 20 percent of bills like this would bankrupt us.

Okay. The questions-

1) How do we go about filing for disability for Don? What are the chances he would qualify for this kind of help?

2) Does anyone know whether he would qualify for insurance coverage thru Medicare?

3) If not, can COBRA be carried for just one person instead of the whole family if you had family coverage when you left that job?

4) My understanding is that he won't qualify for state insurance unless he can't get insurance otherwise. If my insurance does accept him, is there any recourse for us to get financial aid for the horrible 20 percent coinsurance? Or some place we can appeal to for state insurance due to financial hardship because of his diagnosis?

5) If he pays an extra fee in his paycheck currently for life insurance, is there any way to pick up this insurance when he leaves? It's obvious that he won't ever qualify for another plan, so it's very important we maintain this one.

6) Does anyone know if his being not able to work anymore would qualify us for other programs like food stamps, things like that?

7) If we know Don won't be going back to work at his old job, how soon do we talk to human resources about it? We obviously don't want to be screwed over. Also, would it make sense to get the ball rolling on COBRA now so that perhaps it will be all set once his FMLA expires?

Sorry to be tossing a crapload of questions out there, but I figure I'd ask and see if anyone has any info/suggestions/ideas. 

 

Thanks in advance for all your replies!

Michelle, wife of Don

Gonna stand my ground, won't get turned around, And I'll keep this world from draggin' me down; Gonna stand my ground and I won't back down. ~Tom Petty

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