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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Jlynn2303's picture
Replies 6
Last reply 3/21/2011 - 11:04pm

Hi,
I wrote in an earlier post about my 63-yo step mother who was dx with melanoma in the lung last October. It had been found three years previously, but untreated. I've been able to find that if it has metastasized to other organs it is stage 4, general prognosis (5 years, difficult to treat) and various other info on typical sites for mets, etc. What I can't find is what actually might happen to her life.

She's never been the healthiest, was/is overweight, doesn't exercise or do much, etc. Pretty much a couch potato with no desire to do anything different now that she has cancer, so nothing has changed (she had a lung lobe removed last fall and they found no other signs). And even with all this talk of stage 4, etc she just doesn't seem any different now than she did 3 years ago when it was first discovered (though they didn't tell her until last October so it was undiscovered, untreated and allowed to grow for 3 years) or even three years before that. We are doing the watch and wait thing - but no one seems to know what we are waiting FOR. For it to recur, but what does that look like, what does it mean?

I just don't understand how, if it is stage 4, how she could not seem sick? Or feel worse? I hate to be morbid, but I'd like to know what to look for, how to be prepared. If the prognosis is typically 5 years, what does that mean? At this point, there is no treatment happening. Every couple of months they go see a doc. She will go to have ovarian cysts removed on March 21st, but they say they are benign, the PET scan showed nothing although the CA125 was over 1000. And life has just sort of settled back to the way it was before. Everything I've read says this is serious, but only talks in very general terms about prognosis and treatment.

Not that it is certain that this will kill her but statistically, the probability seems high(she seems rather resigned, as her gma, father and brother all died from cancer), but I don't even know what to watch or plan for.

What actually causes death? No one wants to talk about this, and I know, because of history and family dynamics that dealing with this will fall largely to me, so I'd like to have some idea of what actually, day to day, happens. I don't have any say in the treatment itself, don't go to doctor visits, etc. but can pass along useful questions to ask to my dad.

Thanks,
Jennifer

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Bruce in NH's picture
Replies 5
Last reply 3/21/2011 - 6:26pm

Hi,

I haven't posted for a while but logged in this morning and saw the success Rocco has had with ipilimumab - fantastic! Last summer I completed the first round of ipi and my PET scan in November showed three small tumors as stable - good news! So I was disappointed when I had a follow-up PET scan in February, only to find out the chest wall tumor grew by 50% and a fourth tumor is growing in the same region - bummer! So my onc has restarted the ipi program for the second time. My second infusion is this Thursday. Fortunately I tolerate the side effects well as compared to IL2 and biochemo therapies in 2009. So it's wait and see again. The good news is that the chest wall tumors are easily operable as compared to the center chest and left lung tumors that still remain stable after 2+ years - yea! Hoping ipi knocks them all down this time!

My best wishes to all of you who continue to fight this disease. I feel very fortunate to have celebrated my 10th year of fighting melanoma back in October. So continue the fight with me and enjoy life as I do to the fullest!

Take care,

Bruce in NH

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Mapes84's picture
Replies 4
Last reply 3/21/2011 - 10:54am

Hello all! I was hoping to gain some insight as to why my derm may have decided to perform a shave biopsy on my last appointment. Her decision to do this is causing me some anxiety!

A little history: I was diagnosed with a melanoma in situ in 2009 at the age of 25. I had a WLE (no SLNB), and haven't had any problems since. I have been attending my check ups twice yearly, and I have had two other spots biopsied since the melanoma. My derm performed punch biopsies for both of these. One of them came back atypical, but they were both benign.

I had a check up on Thursday, and I showed my dr. a spot that has had me particularly concerned. I noticed one day that it had a strange appearance (irregular border, two shades of brown) and made a mental note to "watch it", as I had a check up approaching within the month. Almost overnight, the spot (which had been completely flat) started to feel elevated. A few days later, it started scabbing. Eek.

Anyway, predictably, she said she would do a biopsy "to be on the safe side". As usual, I turned and looked the other direction while she performed the biopsy because that stuff turns my stomach :p . Suddenly, I felt her putting a bandage on, and I realized that it was over way too quickly. I asked her if she had performed a shave biopsy this time, and she stated that she had. I asked her (politely) why, since we have never done this before. She stated, "I have my reasons" (?!), then mumbled something about catching it really early if it was anything bad.

I don't claim to be a doctor, and I don't know a ton about this stuff, but I was under the impression that shave biopsies are a big no-no if melanoma is even remotely suspected. Was this done out of laziness? I don't understand. Is it time to look for a new dr.?

I am still awaiting biopsy results, but my next question is this: I am aware that a shave biopsy can interfere with staging if melanoma is present. Can a shave biopsy result in a false-negative? This is really bugging me.

Thank you in advance!

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cheryl brodersen's picture
Replies 7
Last reply 3/21/2011 - 5:36am

I was on this bb in the spring when my husband, Steve's scan showed a lit up right tonsil. Even though there are only about 30 cases of MM going to the tonsil, his was indeed metastatic. Just so everyone knows, it can happen so don't assume it's an infection (as we first did) just because it is so rare. And a tonsillectomy after 50 is NOT FUN. Good luck to all!

"There is no such thing as a normal life, Wyatt. There's just life." Doc Holliday to Wyatt Earp, Tombstone (movie)

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dawn dion's picture
Replies 5
Last reply 3/21/2011 - 1:53am

So today was a little frustrating.   Finally had some side effects - wondered when they would show up :)  Anyway - not to bad - hip joints hurt a little, verry tired today.   I am a person that goes non-stop so when I have to slow down it is frustrating.  Also had a low grade fever about 100 - 101 took a couple of tylenol slept allll day - and now all seems to be right with the world.   Go back to Moffit tomorrow for EKG and visit.   So far so good.   I hope the others of you on the forum riding a the B-RAF train are doing as well.

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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alleycat's picture
Replies 4
Last reply 3/20/2011 - 9:19pm
Replies by: LynnLuc, Soupison, Nicky, molly

My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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kbc123's picture
Replies 16
Last reply 3/20/2011 - 3:32pm

Finally going to NYU for my second opinion on my supposed 3A melanoma disease on Monday .  I had an appointment with Anna Pavlik, who I wanted to see because of all the good things I heard, I am now seeing Dr. Ott in her office.  Any feedback on this??

Its bad enough we have to go thru this, make the appointments in advance just to go see someone that may save your life, just to hear "sorry, something has come up."  I am disgusted, aggravated and stressed to the limit.

 

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bball's picture
Replies 3
Last reply 3/19/2011 - 9:35pm

anyone have any experiaence with mistletoe injectionsor hyperberic therapy , to improve immune system

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Rocco's picture
Replies 10
Last reply 3/19/2011 - 9:22pm

Just got home from a triple header of appointments today:  Dermatologist, Ophthalmologist and Oncologist.  I had experienced a lot of scanxiety in the days prior.  But all of that was quickly forgotten as I received a clean bill of health from all three!  CT and MRI were 'as clean as a whistle' according to my Onc.  Ophthalmologist has been keeping track of me since I experienced eye related issues after being on ipi.  He reviewed the recent MRI and was surprised to see that the muscles of my eyes appeared 'normal' again!   Derm said no issues noted, see you again in 6 months.  

Scans again in 3 months (June) and possibly after that I'll move to a 6 month cycle!

Life is VERY good right now! 

-Rocco, Stage IV, Ipi responder!!

Luke 1:37

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The Roche study committee has decided to allow me to go back to the Brim -3 study after I finish with my WBR!  This is great news since the Braf was holding the chest tumors at bay.  I did progress to having 5 brain mets.  I have just finished with a third of the WBR and today I have woken up with more strong side effects, effecting my left side.  I slouch and trip.  Doc said the WBR would cause more swelling and the symptoms would increase for some time.  The steroids are drving me crazy with feeling like I've had WAY too much caffeine and hungry ALL the time! 

 

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ValinMtl's picture
Replies 21
Last reply 3/19/2011 - 1:16pm

I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.

RESULT

Abdomen:

Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.

Impression:

Follow-up patient with metastic melanoma showing disease progression according to recist criteria with more than 20% increase in size of a left inguinal region lymph node.

Decrease in size of more than 30% of a right external ilac lymph node. Two other non-measurable lymph nodes show also decrease in size.

No newly developed lesions.

I'm was very happy about the 30% decrease on my problem leg but extremely concerned and surprised about the 20% increase on left.  I can actually feel the swelling. I have heard (and praying this is so) that sometimes lymph nodes react to ipi and was wondering if anybody else has had such a reaction.  Would appreciate any comments or thoughts on this.  I'm hoping they don't take me off the treatment since I have had this increase (unless, of course, it is absolutely necessary).  I'll be due for another scan in 12 weeks.

Stressed and worried in Montreal,

Val

Live Laugh Love Nothing is worth more than this day!

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kpcollins31's picture
Replies 19
Last reply 3/19/2011 - 9:46am

I am 37, the father of three young boys, and the sole provider for my family. I was just diagnosed with melanoma on Friday (2/18/2011) and am wading through all this new information. It is intimidating and frightening. I had a growth on my forarm... was large and unsightly but the doctor was not concerned. Initial diagnosis was keratoacanthoma. Now I get this report on a malignant melanoma... Breslow thickness >8mm, Clark level V, ulceration present, mitotic rate of 7. All Greek until I start doing some reading. Now I am almost wishing I had not read anything. Still a little shocked and scared. I am scheduled for a sentinal lymph node biopsy in a week on my birthday of all days. Hoping for the best present ever which would be a negative result.

Happy to have found this forum in my reading. Wish me luck.

Kevin

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killmel's picture
Replies 2
Last reply 3/19/2011 - 1:26am
Replies by: MaryD, lhaley

Hi Everyone,

I do not post much but I visit everyday to learn from you all.

I am posting today to be able to give back to all of you who have helped me learn so much.

I am  stage 3 and have scans regularly going back to January 2009. I always have my scans done at the same place so that the radiologist have copies of older scans for comparison.This week I had my scans and was scared out of my wits after reading the reports. To make a long story short, I have my very lucky to keep my recurrences in my leg. The radiologist who read my scans this week identied "new" areas in my lung & liver that  were suspicious & needed follow-up.

Frantic, I called  another radilogist who had read my scans in the past & ask his opinion of these 2 "NEW" area in my lung & liver. To my relief, this radiologist took the time & went back to my old scans in 2009 & was able to identify that these 2 areas of concern were on my scans back in 2009. The areas of concern in my lung & liver were the same & stable, and more than likely benign.

My lesson learned is not to panic . The radiologist who read my scans this week did not even bother to go back to look at older scans and compare. I would recommend everyone to try to get a second opinion before believing the worst. Also, it is a good idea to get the CD discs of your scans so that you can get a second opinion & have a record of your history ofscans.

Thanks for reading my post.Wishing you all a lifetime of NED!

Wendy

 

 

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Anonymous's picture
Replies 1
Last reply 3/18/2011 - 10:15pm
Replies by: LynnLuc

Anyone else concerned that insurance companies might balk at approving the cost of ipi/Yervoy treatments (off trial)  if/when FDA moves forward for approval of it? 

Has anyone had experience continuing with a drug going from trial to mainstream and dealing with insurance approvals, etc? 

Just curious..

Luke 1:37

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gabsound's picture
Replies 2
Last reply 3/18/2011 - 9:43pm
Replies by: LynnLuc, lhaley

The results came back on my PET scan:

"There are extensive changes seen within the right groin and medial right thigh. Single area of increased hypermetabolic activity within the inferior portion of the right thigh incision where there is some thickening seen on the CT. The SUV is as high as 2.0. Suggest direct visualization and possible repeat biopsy and excision is suggested. There is low grade probable post surgcal activity within the right groin with no definite hypermetabolic lesions. The remainder of the PET findings demonstrate no evidence of distant metastatic disease."

My surgeon is the one that gave me the report and he said "that's why I don't do the PET scan this early". He thinks it's all related to the surgery and did not seem worried. I feel relieved, but know of course the scan will need to be repeated later to recheck that area. That part of my leg has been sore, but is less sore now than it was. Tomorrow makes 4 weeks from the date of my WLE and lymph node dissection.

I also saw on a consult report that my Physician friend had that dx is superficial spreading Clark's level IV. Breslows depth 2.35 mm with ulceration present. Regression absent. Lesion now T3bN1M0. Does this make me stage 3b? Assuming PET is really negative?

The PET scan was done 3 weeks post surgery. I still had one of my drains in. That came out yesterday :)  I'm wondering if anyone else had changes in region of surgery and did these resolve?

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