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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vlmd1986's picture
Replies 2
Last reply 8/29/2014 - 11:09pm

Hi!

I'm scheduled for a left groin CLND tomorrow, and my doctor said he's going to do a sartorius muscle flap. He said I wouldn't really have any limitations afterward from that, but I forgot to ask specifically about skiing!!

Have any of y'all had this done and then gone skiing afterward? (Not like the next week, but anytime after the surgery, haha.)

Thanks!

V

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MacMac's picture
Replies 13
Last reply 8/29/2014 - 1:53pm

I went to my dermatologist a few weeks ago mostly because my grandma was concerned about what I thought was pimple gone wrong  on the top of my left shoulder (her sister passed of Melanoma).  Being the good grandaughter I am I had it checked out :)  Imagine my surprise when I received the call at work that it was Desmoplastic Melignant Melanoma.  After that all I heard wast "blah blah blah."  I got a copy of my pathology report.  The thickness is 0.92 mm, Clark's level III, Mitotic index of 1, pathologic stage T1b.  From that point forward I feel as if I have been shuffled from Dr to Dr and being told make this appointment go to that office fill out this paperwork.  Yesterday I actually drove to the wrong office.  I feel like I am only really hearing a 1/4 of what I am being told (thank goodness for my family that accompanies me to these appointments). 

I saw the oncologist last week.  He said that there are cancer cells along all the margins of the shave? biopsy that was done.  He said that since there were cancer cells along the margins and I measured at a 0.92 mm it is highly likely there is still cancer left.  He also said my thickness could have been greater since they didn't get all of it when they scraped of the mole.  He feels it could have been close to or a 1mm fairly easily.  He recommended a wide excision on my shoulder.  From the point of the mole it would be 2cm out and all the way around.  He will also be doing a sentinel lymph node biopsy.

Yesterday I saw the plastic surgeon.  Since the cancer is on top of my shoulder I don't have a lot of skin to maneuver to close the gapping hole I am going to have. So he gave me two options:

(1) They will re-arrange the skin the close the wound but this will cause an S shape scar that will run basically from my collar bone near my neck all the way to the outside of my shoulder on the back.  He said that this will require a night stay in the hospital and will be one procedure.  However, he indicated that because of the location the skin will be very tight and under pressure so it will stretch and pull on the scar causing it to widen.  Sounds like it will be a pretty narly looking thing and pretty large.  On the positive note I have freckles so it may act as camoflauge???

(2) The second option will consist of three seperate surgeries each with a 2-4 day hospital stay.  The first surgery will consist of having a temporary skin graft placed in the wound.  After x amount of time (again I am not hearing every detail) I will go back into surgery and have expanders placed under my skin - one near the base of my neck and one on the outside of the shoulder.  The third surgery they will remove the expanders and they will close the wound.  This will give a scar that runs in the direction of a bra strap and will be much narrower since the skin will not be under so much pressure.

I am very concerned with utlimate range of motion of that arm.  I had shoulder surgery on my other arm last year and will never be 100% so I heavily relay on my left arm.  I am worried if I go the S route that my skin will be so tight that it may hinder my movement.

I don't consider myself a vein person so option 2 seems like a lot to go through just for a pretty scar but I am also not sure if i want to look down and see this horrendous thing on my shoulder that may just be a constant reminder of what I am feeling right now.  Also I worry if I ever need a revision to the S scar that my insurance will then consier it cosmetic. 

I still have to go back to the oncologyst and the plastic surgeon for a pre-op appointment and I also have to see my eye Dr and womanly Dr to check for melanoma elsewhwere.  I just feel so lost.  My uncle passed away from lung cancer last year so I just keep telling myself "at least it isn't lung cancer"  but then I say "but this is still scary" I am not sure what to do or what to think and I guess I just need some advise from people who may be feeling the same.  I just feel like I am not allowed to make a big deal of any of this because the perception out there is "skin cancer is the best cancer so you are lucky"  (or maybe that is just my fear - that people think that)

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Annalive's picture
Replies 5
Last reply 8/29/2014 - 10:07am

Hello All,

I recently had a surgery for metastatic tumor near L4-L5 spine.  Because of close proximity to spinal nerve root, doctors ended up doing a partial ressection.  They are now suggesting that I do 3 doses of high dose Stereotactic Radiation to rid body of remaining cells at that site.  Recent PET showed no new sites of disease. There is still some risk of nerve damage.  I have never done radiation and am wondering if anyone has experience with this type of treatment? outcomes? side effects?  Thank You,  Ann 

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eturner's picture
Replies 6
Last reply 8/28/2014 - 1:28pm
Replies by: eturner, arthurjedi007, kalisama, Anonymous

Hi, I have a question. My husband has stage 4 melanoma in spine, hips and pelvis and a few mets on skull as well and maybe two mets on his right lung. He is taking the Braf combo drug right now (5 months in) Before the braf drug he was in a huge amount of pain in hips and back area..... After starting the braf drug no pain (mets still in bones and lung but growth is at a standstill). About three weeeks ago he stared having pain in hip down left leg into calf and ankle, he has also started taking the morphine he was given before staring the braf drug ( during the past 5 months he has needed no pain medication). Even on the morphine when he goes to bed he can't get comfortable and cant get to sleep. On Friday he had a  CT scan of hips and spine area.... It found no growth in bones..... WHAT COULD BE THE PAIN?? This Dr at UVA said they will now do an MRI on Friday!! What will the MRI be looking for?? Any advice or help would really be appreciated!! 

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audrey_borgstrom23's picture
Replies 2
Last reply 8/27/2014 - 10:23pm
Replies by: Kristin_22, Janner

A couple questions that I hope someone can answer!

I am a 23 y/o female, diagnosed with melanoma 5 days ago. The initial biopsy was 12 days ago. I was told at the time this "spot" was removed that it didn't look like anything but did a shave biopsy just in case. It was done by a PAC (a young woman only a few years older than myself) who said she would be surprised if it came back as anything.

Exactly a week later (last week Wednesday) I got a call that it came back as melanoma and that I had to go back to get the surrounding area excised. The next day I had the surgery done. They said all should be fine, come back in 6 months for a check up.

On Friday, I had the dermatologists office fax over the pathology report from the initial biopsy. Lots of big words, but a couple things stood out. It said the melanoma was at least 0.4mm deep and at least a clark's level III. I think it read "at least" because there was a sentence that stated that although a majority of the depth had been sampled, there was transection at the base and a deeper more invasive melanoma cannot be excluded.

Now to me, I'm thinking that when this PAC did the biopsy, she didn't think it was melanoma and so she actually shaved off most of the tumor, but not all of it.

I'm wondering if this has increased my chances of the spreading of the cancer. Or if it doesn't really affect that at all. And what are the chances that the melanoma is in fact deeper than 0.4mm? I understand this is a thin melanoma. The results of the excision should be in by tomorrow, but I just wanted some input from anyone with experience with this?

I appreciate your time in reading this, hope to hear some input soon! Thank you all greatly!

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Resilient4Life's picture
Replies 2
Last reply 8/27/2014 - 10:20pm
Replies by: Kristin_22, Janner

 

Just received notice of my surgery date for Stage IA melanoma. It is exactly one month after the biopsy. Reading on the web indicates this is fairly normal, but a wait of 1-3 months would be unwise and excessive.

Should I do anything special for the area while I wait? The dermatologist's office gave me a petroleum based ointment. I have read that petroleum products cause cancer. I'm using a homeopathic salve instead. Does it make any difference how clean I keep the spot? (Hydrogen peroxide 3 times a day followed by ointment) Obviously  some attention is necessary,  but don't want to go overboard.

Thank you for your response.

 

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arthurjedi007's picture
Replies 8
Last reply 8/27/2014 - 8:32pm

Just an update if anyone is interested.

I believe I'm really lucky with this brain stuff so far. Basically the one skull tumor that is growing is pressing on the outer layer of the brain and displacing the brain but nothing is in the brain. The other 2 tumors are actually a little smaller than they were in February with one of them still pressing on the outer layer of the brain but it doesn't displace it. I assume that's the PD1 working some but dunno. So why didn't they radiate last February when the mri said I had a tumor pressing on my brain? I dunno. That was my local onc doc then and now I have my mayo doc. That was also the time I was almost paralyzed so I didn't really look at the mri i guess.

Anyway my local radiation doc is actually more concerned with the spine. Apparently there is some more spinal cord stuff happening like last February although I'm not really experiencing much symptoms yet. My mayo doc did confirm after reading the mri reports that the spine needs radiated too. So the plan is PD1 on Sept 3. Radiate t12 and l2 in spine at 30 gray in 5 fractions Sept 8 to 17th. That is the same plan that shrank the t10 in March and now the PD1 is continuing to shrink it.

For the skull though he basically said he hasn't decided the best way of doing it. He hasn't got it in his head yet he said. He also said he will be talking to his colleague about it. He also didn't want me on the table that long and not being able to stay still for 30 plus minutes. So he's going to decide how to do it and do it after the spine. So the plan is PD1 on Sept 24. Radiate skull in some fashion starting around Sept 26.

Like Joe said about the dosage needing to be higher per zap for melanoma he did say it would be higher than 3000 (ie: 3 gray I think) probably something like 4100. I guess that is a little over 4 gray. But he was not sure about a minimum of 6 gray to the skull. But he hasn't decided anything with the skull yet. He was talking more about focusing the beams directly and things instead of the standard area blast. So I think he's on the right track. I also think if he can shrink it even a litle maybe the PD1 will take over.

I hope I get the radiation/pd1 combo miracle that some people get. We shall see.

 

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GAngel's picture
Replies 6
Last reply 8/27/2014 - 4:50pm
Replies by: GAngel, rick1981, jualonso, Mat

I wanted to share the good news and update everyone on Rudy's health status. His last scan on July 25th showed no evidence of disease. The date of that scan was the 1 year mark of him starting the combo and 8 months NED status. His oncologist said that Rudy is one of three of his patients that are still responding to this therapy with Rudy being the patient with the most months of NED status! It's important to note that for the past 4 months Rudy has been on an intermittent dosing schedule of 2 weeks on combo 1 week off. He took a 1 month break from the combo back in April which was the month before he started intermittent dosing.  Taking a month off of the medication was Rudy's idea and he did not tell his oncologist until after the fact.  His doctor scolded him and said that Rudy had dodged a bullet and that what he did was "non-compliant" but he was smiling all the while and quite amazed that his scan was clear despite his rebellion.  

I'm sure that many are thinking that Rudy is playing russian roulette but it's not a decision that he made lightly. For him, it's a quality of life issue along with a strong belief in the effectiveness of the alternative meds he is taking.  I have shared before that Rudy has been taking hemp oil since May of 2013 (he was diagnosed stage 4 in February 2013).  We believe that the oil is playing a big role in his success so far in battling this disease.  The hemp oil  (he makes it himself) is not legal in this country, yet, it has proven healing abilities and is safer than any chemotherapy drug offered by the pharmaceutical companies. There are no side effects other than slight drowsiness. We know personally two melanoma patients who are both currently NED status and the only treatment they have ever done is hemp oil.   I am not suggesting that this is the answer for everyone...I'm just letting you all know that there are other things out there. Not all are "snake oils" just because they have not been FDA approved. Do the research...dig deep, it's your life...do all you can to save it.     

We also strongly believe in having a positive mental attitude and eating a healthy diet. Last but of most importance to us is holding on to our faith, knowing that it's all in Our Heavenly Father's hands.

God bless you all!

Gina  

 

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Charlie S's picture
Replies 15
Last reply 8/27/2014 - 1:53pm

Guess I didn't get the memo about ALL the posts being moved to the archive.  Ouch.  Here's hoping everybody catches on pretty quick.

 

Charlie S

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Anonymous's picture
Replies 4
Last reply 8/27/2014 - 1:37pm
Replies by: ChemistLN, Janner, Anonymous

I was just denied a 20 year term life insurance policy because of an early stage 1 melanoma from a couple years ago.  If the survival rates are really as positive as what I thought, why would an underwriter decline coverage if the expected survival is 90%+ ?

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BrianP's picture
Replies 10
Last reply 8/27/2014 - 1:30pm

This is a pretty interesting 8 minute panel discussion on checkpoint inhibitor Combination Strategies.

Joe, I think you'll find the discussion interesting on TIL therapy and some discoveries they've made recently on why TIL sometimes works initially but then there are recurrences.

G-Samsa, I looked through the 2014 ASCO abstracts and couldn't find anything relating to the side effects to the lungs you recently mentioned but there is a little discussion to PD-1 side effects in this video that may be what you were referring to. They mention that anti-PD-1 not only blocks PD-L1 but also PD-L2. Apparently PD-L2 is needed to promote homeostasis in organs and prevent pneumonitis in the lungs which can be very dangerous.  This is why they think that anti-PD-L1 is so far having less side effects than anti-PD-1.

The link is to part 4 of a 5 part panel discussion. I haven't watched all the discussions yet but found this one pretty informative.

http://www.onclive.com/peer-exchange/immunotherapy/Checkpoint-Inhibitor-Combination-Strategies

 

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Anonymous's picture
Anonymous
Replies 6
Last reply 8/27/2014 - 11:27am
Replies by: Anonymous, arthurjedi007, G-Samsa, RJoeyB

This is a qestion for anyone that can help and I will provide all of the information that I have. Here goes. I work with a lady that was diagnosed with stage 4 OM about 6 years ago. This is where I don't have all the info as to what happened at this point but fast forward about 5 years of checkup and clean scans to the last year where she has had a mestastasis to the liver, She has taken IPI that she did not tolerate very well ( made her very sick with colitis) She has also had a few ablations to the liver that did well but the tumors would come back. Last week her doctor sent her home with a bottle of pain pills and told her that was all he could do for her. She now has active tumors in both lobes of the liver. She sees doctors at The West Clinic in Memphis,TN. I'm not sure if the doctor is a melanoma specialist or not but my real question is this. Does anyone know of any stage 4 melanoma studies going on now that she could possibly get into. This could be her last hope!

Thanks for any input & again what i have stated her is really all the info that i have about her case.

 

 

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brooke's picture
Replies 13
Last reply 8/27/2014 - 8:48am

Hello!

I've been reading about various 'cancer fighting'  supplements and wondering if anyone has opinions or experiences with them.

I've heard especially good things about curcumin, wondering what common dosing is.

My  husband has also been juicing every day and I've bought him green tea extract and vitamin D. 

(We are not doing this in lieu of standard treatment, just additionally!)

Thanks,

Brooke

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The PD1 is doing fantastic but there are a few problematic tumors thus they want to do radiation.

A tumor in my skull is right at my brain. Tomorrow's MRI will show details. But today my radiation doc was thinking of doing external beams to that section of the skull where the tumor is of 39 gray in 13 fractions. After the MRI he will know if he can instead angle the beams to just that tumor or if we are dealing with further problems. The pet scan did seem to indicate several tiny tumors in various spots of my skull as well as this 2cm one.

There are also the t12 and l2 in my spine. He's thinking of doing those like last time for the t10 of 30 gray each in 5 fractions. Although they are a problem I'm not having anywhere near the symptoms like I did when the t10 almost paralyzed me last winter. Although the pet/ct scan seems to indicate from the light on the skelatal view the t12 is about 2 thirds the size the t10 used to be. It's a short horizontal bar instead of a dot.

So my first concern is over 90 gray seems like a whole lot of radiation but I dunno maybe that is common. It's certainly more than 3 times what I've had in the past.

My second concern is the plan to radiate the tumor in my skull. I was thinking something more like gamma knife but maybe that is only for inside the brain not the skull at the brain I dunno. I was also thinking intensity-modulated radiotherapy (IMRT) but again maybe that is only for inside the brain. I know mayo where I get my pd1 is still working on their proton therapy which again may not be for this. I know when my doc kept me from being paralyzed he did stereostatic radiation (SRS) with a CT scanner to more directly pinpoint the beams.

So I dunno. I'm kind of over my head again. Any advice would be appreciated.

Artie

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