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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Wendi Lynn's picture
Replies 9
Last reply 9/6/2010 - 9:24pm

Hi Everyone!

I've been lurking for awhile and reading all the great advice and support given.  Seems like this is a great support group and I'm looking forward to being an active part of this community!

I was diagnosed in May after having a mole that I've had my whole life on my cheek biopsied by the dermatologist.  2 weeks later I had the WLE (6/15).  Clear margins after WLE.  2 weeks later I met with the oncologist.  Night before I saw him, I found a lump right at my jaw line.  Pointed it out to the oncologist and was told it was probably nothing.   He sent me to a Head & Neck doctor for the SNB.  A month later I get in to see the new doctor who orders a biopsy on the lump.  A month later I get the biopsy done (9/1).  Still waiting on the results of the biopsy, but I am prepared for the next step.  (Can't even begin to tell you all how frustrated I am with all the waiting, but after reading some posts, the waiting game seems very common!)

I was hoping to hear about other's experience with a neck dissection.  I've searched here and online and really don't find a lot of information.  I suspect that's what's next for me and I want to be prepared with the right questions and expectations.

As for the advice, I'm terribly disappointed with both these doctors that I'm working with now and was wondering if anyone had a reccommendation on locating melanoma specialists.  Not sure what information I can provide except that I'm located near Long Beach, CA. 

Again, can't say thanks enough to everyone for all that I've learned so far. 

Wendi

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Sharyn's picture
Replies 6
Last reply 9/6/2010 - 8:44pm

Hi Ipi patients

I will be starting Ipi in a couple of weeks. Just wondering whether side effects are immediate, or do they show up after a week, month? I'm asking because Jim and I are considering a little vacation after I start Ipi, but if I'm going to be sick, we'll forego those plans. Thanks. BTW, I got my staples, stitches and drain out from the mastectomy, and I'm doing really well! I even have a temporary "falsey" to use until I get my prosthetic breast in 4 more weeks. At least it's better than the 4 pairs of socks I had stuffed into my bra! LOL!!!

Hugs

Sharyn

Stage IV 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Nancy's picture
Replies 2
Last reply 9/6/2010 - 8:34pm

Buddy fell, went to ER and now is in a rehabilation center.  Scans done in the ER shows swelling in the brain.  They put him on 4mg of steroids around the clock.  He was scheduled for IPI last Tuesday (3rd treatment)  He was on the road to Philly, when they called to say he couldn't have the 3rd dose, as he was on high dose of steroids.  Dr. Sharfman said he should taper off the steroids very slowly.   Its the holiday weekend, so I assume on Tuesday, as he stated, Buddy's dosage will be 1 - 4mg in AM, 4mg in PM and 2mg at bedtime.  He has to be on 2 doses before he can continue with the IPI - His next treatment of IPI will be Sept 21 - if he can stay stable with a low dose steroids.  He cannot make up losing the 3rd dose.  It is amazing just how well he is doing on the steroids.  He went from not being able to sit up on a chair to now getting in wheelchair by himself, using the bathroom, can almost dress himself, gets a little unbalanced with ong pants, and pulling the long socks up...but he can work on that.  The rebah center now has him starting to use the walker, and trying the steps.  I get to take him to orchard for 4 hours a day, which he enjoys. 

Can you tell me how long can one stay on steroids?

If he goes off the steroids, will he most likely be so unbalanced as to fall again?

The doctor has said IPI was his only chance, so I fail to understand why he's not given the IPI even if he's on steroids as its a compassionate drug and hes already started on it..

Is there anyone I could contact except for the clinical nurse and the doctor at Philly to try to get IPI for Buddy?

Buddy did well on IPI, some fatigue, but that may also have been fatigue leftovers from the brain radiation and surgery..

Thanks everyone -

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Anonymous's picture
Anonymous
Replies 0

Anyone heard from Jan....I am soworried about how her husband is doing!

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Dear All:  

First i'll ask Sue (skysar) since she seemed to have hit my nail on the head.....also any other of ya'll that have had lung mets and went to MDAnderson.  

1--  After 1 yr. Interferon i finished in mid July.

2-- Had my 3 mth. CT scan at Mayo, JAX,  which showed increased # of lung nodules AND increase in size of 5 or more "micro-nodules" that have been present since my Feb. and/or May CT scan.  Largest noted is still under 1cm -  around 7 mm -  rest are around 5mm.

3-- I'm ready to go to MDA for the best?? advise/treatment.

 

Questions:  

1-- Sue/others- are/were your circumstances simular?

2-- What treatment was recommended?  (besides IPI)

3-- How long after contact does it take to get appt.?? 

4-- I am considering IPI, but wonder if something more "proven" to at least hopefully suppress increased tumor growth- like IL-2 with Tremador thrown in- would perhaps be better for me .....and at least buy time 'till IPI  "easier" to get: ie.- FDA approved we hope around 1st of 2011.

5-- I'm fixn' to be 48 yrs. old and in pretty good health other than probable stage 4 mm now.

 

Any input would be greatly appreciated- especially from those who know more than me-  .....from anyone, and especially people that are/were in same circumstances.  MDA experts like AmyB and others may could give me some good advise!

 

Mayo in JAX said 80-90% sure at this pt. the mutiple spots on lungs are mm.  

 

I think of ALL of you often; feel guilty that i only get on here for questions, but so far my only "big experience" has been I-feron.

 

Love and God Bless EVERYONE! -    Grady.  aka  "ShadyGrady Low Swamps of GA."

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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AndyD's picture
Replies 7
Last reply 9/6/2010 - 6:49am

I've had 4 ipi treatments now and I feel so tired like gravity is 10x stronger than it should be. =] Is it this the cancer, the ipi, or my glands out of whack making me tired? If you're on ipi, do you feel way more tired than normal? Will I have normal energy levels in the future?

hope to hear your thoughts

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Kevin from Atlanta's picture
Replies 5
Last reply 9/5/2010 - 11:03pm

Next week I get my scans after doing four treatments of Ipi.

If someone is severly allergic to leukine, who they be able to do IL-2?

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bonnieb's picture
Replies 3
Last reply 9/5/2010 - 7:38pm
Replies by: MollyB, Angela C, Janner

I had a mole off in September 09 that was malignant melanoma. Re-excised in Novmber and now there is a small mole in the middle of the scar tissue. How common is this? DO I get it checked out asap?? I am quite worried!!

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/4/2010 - 11:41pm
Replies by: rj, Anonymous

I just had blood work done by my primary care doctor and it showed lymphocites low creatinine high,along with several other things that were flagged. I was at my oncologist and had blood work done about a month ago where nothing showed up abnormal.  I'm scheduled to go to a nephrologist, have an ultrasound done and some more lab work, so my primary care doctor clearly thinks we need further checking. Might this be something to do with melanoma, or am I looking at something entirely different?  I'm in good health otherwise.

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mifis's picture
Replies 3
Last reply 9/4/2010 - 11:33pm
Replies by: mifis, eeick, JenM

Hi there,

I had a melanoma in situ excised in May, a further excision in June and as no clear margins a further excision in July. Still no clear margins; showing atypical melanocytes. Dermatologist and Plastic surgeon say not to worry about it. Pathologist suggested a possible further biopsy near to, but 1 to 2 inches away from excision to see if whole area atypical, then would assume sun damage. Plastic Surgeon and Dermatologist say not to worry. Spoke with Family Doctor and she agrees with me that a second opinion might be helpful, maybe even a re-read of the slides as dermatopathology so subjective. She is particularly worried about the part of the patho report that reads " the extent of disarray and atypia is very concerning". Problem is I am in Central New York and Family Practitioner not sure of who to send me to in area so I am looking for recommendations of experienced specialists in melanoma in the area, which includes Syracuse, Rochester, Albany. Also willing to go to NYC if necessary or even Boston (but not sure if insurance would cover that)

Thanks for your help!

 

Jennifer

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ErikaHouston2's picture
Replies 1
Last reply 9/4/2010 - 11:31pm
Replies by: lhaley

High level summary - I am stage IA - Diagnosed in Oct '08 .65mm clark level II/III. I am 31 married with a 2 yo and a 4 month old.

Fast forward to late July 2010 - pass out, wake up to massive unexplained GI bleeding (no history whatsoever of issues), taken to ER in ambulance, admitted to ICU. Required blood transfusion (4 units).   Every test imagineable is run on me while staying in the hospital for four days (CT Scan, wireless capsule encoscopy, EGD, two (yes two!) colonoscopies, small bowel xray, and two nuclear imaging tests. Nothing is found to explain bleeding and no new bleeding so I am sent home with a watch and wait approach and told to follow up in a month with GI Dr. that followed me in hospital.  

Have all my records from hospital stay sent over to MD Anderson where I am followed. My Dermatologist at MDA discusses case with Melanoma Oncologist who recommends PET CT scan.

I have PET CT scan 35 days after initial GI bleeding.

Impression from PET CT is:

1. No definite evidence of melanoma metastases.
2. There is uptake seen within the loops of small bowel in the pelvis which could be due to recent history of GI bleeding. This can be followed on subsequent exams.

The Melanoma oncologist recommended doing another PET CT in one month.

Any thoughts on the impression? Should I be worried?

Unfortunately since my main Dr. at MDA is a Dermatologist she is playing the messenger and I feel like I am really in limbo and not getting a good read on if they are just being extremely cautious or if this is something I should be more concerned about.

 

 

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KatyWI's picture
Replies 3
Last reply 9/4/2010 - 9:36pm
Replies by: King, KatyWI, Eileen L

So my 3-month PET wasn't exactly what I wanted - there are three small (4-5 mm), low-SUV (1-2) nodules in various places in my butt.  Could be nothing (e.g., cysts), but with MM...nothing's ever "nothing."  The nurse mentioned one possible outcome would be to have a surgeon remove them.  My doctor's appointment isn't until Thursday, but of course I want to go in armed with as much info as possible.  So here's the question:  two of the nodules are too deep to feel (one is 1 cm beneath the skin, and another is deeper still).  I can't feel these two.  How would a surgeon even find them to take out?  And what exactly would the surgeon take out?  My two previous subQs have been near the skin surface on my back and they were removed in a procedure analagous to a WLE, including an ellipse of surface skin.  That doesn't make sense to me for the deeper ones.

Anybody have experience?  How is surgery handled for deep, small lesions?

KatyWI, Stage IV, maybe still NED 4 months, or maybe not.

Just keep going!

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Keri W's picture
Replies 10
Last reply 9/4/2010 - 9:20pm

I am trying to get information regarding the IL2 treatment.  My brother was referred to Duke University for the IL2 treatment.  From the infomration I have read, the treatment is grueling, but the effects are temporary.  I live in Louisiana and I am trying to decide if he will need someone with him as he undergoes the treatment.  I would love to hear from anyone who has undergone this treatment, so I will have a better idea of what to expect. 

If God brings you to it., he will get you through it.

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jag's picture
Replies 9
Last reply 9/4/2010 - 3:24am

rigged the hospital schedule to get my post op MRI done1st thing yesterday, I am now NED.  Surgeon at first thought the thing in my head was a tumor because it was black looking (hemosiderin deposits rather than melanoma breakdown  from macrophages) frozen path showed no new tumor cells, so waiting for the gross pathology to see if there are actually any tumor cells.  The doctors and my wife all seem very fascinated and are suggesting it could be my own immune system keeping things in check.   Since it has already taken me 1/2 hour to type just this, it would be nice if it could work a little faster.    Can't use my left side so well, but after craniotomy #3, I couldn't even feel my left leg.   Been down this road before, hopefully will be able to cover my ER shift on Sun.

As for the doctors and nurses here at Sloan, I couldn't be more humbled.   

Insert Generic Inspirational Motto Here

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Maybe this has already been discussed in the past, but I thought I would share this information with the group because I had been under the impression that with a melanoma diagnosis that life insurance was out of the question, except at a much higher rate.  One of my friends told me that when she and her husband were getting it, that melanoma was specifically listed as automatically disqualifying you.

Well, my husband and I already had some life insurance but felt we needed to get more.  I told my husband that I didn't want to bother with it for me because I wasn't going to get it (and if so, it would be extremely expensive).  He insisted.  So we applied through The Hartford.  I was a little more encouraged about the possibility of getting accepted, as from what I read in an article I found on the Internet, they were one of the few carriers that gave policies to people with a cancer diagnosis. 

Wow, what a surprise I had when the agent called and advised me that I'm getting the "preferred" rate, the same as my husband (who has perfect health).  Even the agent was a little surprised, but he'd never had any experience with an applicant with a melanoma diagnosis.

He did tell me, though, that if I had had an SNB, that I would have automatically been ruled out from getting insurance, and I know that sometimes people (albeit few) in their panic with the diagnosis, when their Breslow depth doesn't really warrant it, still get one, and unfortunately, these are the kind of things one learns after the fact, but something I would definitely mention to someone to think about.

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