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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Tamlin's picture
Replies 3
Last reply 4/6/2016 - 2:31pm
Replies by: jennunicorn, Tamlin

Hi 

First of all, thank you so much to those who took the time to reply to my previous posts. 

I had an appointment yesterday with consultant regarding lymph node removal, but once he examined me, he said he would rather try and avoid this as node is very deep, so he did a fine needle aspiration biopsy there and then. He is now arranging a CT scan for me asap. 

Having a bit of a wobble. Should I be worried about this? 

Thanks 

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ldcroberts's picture
Replies 3
Last reply 4/6/2016 - 12:52pm

Hi,

 

I'm interested in stories or research showing whether a tumour rupture helps the immune system detect future melanoma's and improves prognosis or whether it causes metatasis and spread and worsens prognosis.

I can find some research that shows other types of cancer spread and worsen, and some research that shows melanoma has an immune response rather than spread, but I was hoping to balance it out to see whether there is a pattern or whether it's just random.  Any survivor stories of ruptures appreciated too.

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Scooby123's picture
Replies 15
Last reply 4/6/2016 - 12:34pm

Hi all been today had gamma  knife, after more detailed scan still just the one spot to take care of. It had grown from 4mm to 5 mm but the nurse said scan I had before is different regarding slices they take of your brain, so most of time always different. Not sure if growing 1 mm is quick from Feb scan to now.

everything went ok just very sore where the frame was fitted. Went in at 7am home for 3pm did not want to stay over night.

Will see my consultant in May they said 3 months before scanning again to see how it's gone. No mention of any other treatment at this stage. They said they gave me max dose too tumour .so hope it kills it.

hope you all ok 

take care

scooby123❤️

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Anonymous's picture
Anonymous
Replies 4
Last reply 4/5/2016 - 9:33am
Replies by: Anonymous, Momofjake, jennunicorn

I am trying to not freak out, so I am reaching out to the people here. first a little history..

my aunt on my Dads side died at 37 of Melanoma

in 8/2014 I was diagnosed with in situ and have had 14 dysplastic moles removed

In January of this year my daughter(18) told me she had a lump in her arm pit, we watched it for a few weeks to see if it would go away, thinking maybe it was an infected sweat gland or something. It did not go away so she went to the Dr. and took antibiotics for 10 days. Still no change, it is hard, size of a quarter, does not move, and not painful unless you push hard on it. Today we went back to the Dr. And she said it is her lymph node so she wants to send her for a sonogram. I told the Dr Id like her to look at a mole on my daughters back that she has had since she was little, we have had it looked at several times over the years and no Dr. Has ever been concerned. Its been 2 years since the last time. Although I have never liked the looks of it, I have trusted the Doctors. Today as soon as this new Dr saw it she said it needs to come off and be sent for biopsy. It has all but the D of the ABCD's of melanoma. She then said that she wants to do chest xray, and a CT scan with dye. I ask if the mole and the lymph node could be hand in hand and of course she just said lets wait for the results. Which she said should be back by end of this week. My biopsies usually take 10 days. So that concerned me, I know the quicker the results the worse the news usually is. Im not really sure what I am asking  of you all.. Maybe any experiences similar to this? I am a nervous wreck and doing my best to be strong and positive for my daughter. But I know the beast of Melanoma, and waiting just, well it just sucks! 

Thank you! 

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Roxy1453's picture
Replies 4
Last reply 4/5/2016 - 9:06am
Replies by: AllysonRuth, Jubes, Roxy1453

I don't get on here very often and it's been awhile now.  I have stage IV metastatic Melanoma.  I've been fighting for 10 years now.  But I can say, for the first time, I am NED!  I took keytruda but had to stop due to colitis.  Now I find out I have arthritis in my hips.  I just thought it was old age (I'm 63).  I have never had it anywhere before.  Then, this weekend, I read that it could be from keytruda.  Has anyone had any experience with this?

"I can do all things through Christ who strengthens me." Philippians 4:13

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 1 year back detected with left eye choroidal melanoma with negative pet ct for any otherparts in body.so enucleation and left modified radical neck disection done.

but 1 day before pet ct suggestive of metastatic melanoma to both lobes of liver and left illiac bone.we are from india.

can you guide us which is the best hospital for further treatment in world/usa/india?

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jag's picture
Replies 8
Last reply 4/4/2016 - 7:58pm

Hello ladies and gentlemen,

Anybody reading this, I would just like to say that all of my life, I have been a bit of a retarded clown so just imagine some idiot with a red nose and a horn jumping around writing this and bear with me. I am just posting this to hopefully pass on the good news, inspiration, hope to somebody else, some people might be entertained and some might shake their head and say here we go again with this idiot.  Very happy to be above ground and over 40.  Now I can say things like "In my day, we didn't have all of the fancy schmancy immunomodulators and targeted molecular treatments like they do now".  I have attached a patnet of my treatments just to put it in perspective-back in those days I wasn't the only one who went through this much misery- Charlie S is a perfect example.  Everybody was miserable in those days, but we were all in it together, we ate dirt and we were greatful.  Lance Armstrong was the hero, men were men, and sheep were scared.  I thought I was a goner when I first got mets to the brain.  My license plate at the time was 1 lung which was pretty catchy I guess on account of it getting me out of a bunch of speeding tickets.   I had already had 2 lung cuts- the second one took the whole left side.  In and out of that, I got some pretty miserable scriptions called Biochemo and IL2 I think .  But the lung removal took a lot out of me, and then there was more to come.  The whole time, my wife propped me up like a scarecrow and the crows were dropping them terds all over me-she'd clean me off and put me back out in the fields again.  Then into the brain I tell ya.  Not good into the brain, but life is hard so they zapped me with a crown bolted into my head, cut me and and I still got up-6 more times.  Each time a little lower IQ then the next. couldn't feel ma left leg after #3 and needed a cane.  Eventually I was having the fits, lost ma job, and was on the Dilantin, that had me seein purty colors and dizzy so they changed me to some new scriptions which eventually worked.  In the meantime I also had the temodar and gave maself injections.  This all happened and when they finally got rid of the tumors, my last 2 surgeries were to get rid of the radiation dirt.  We lost plenty of good ones in those days too.   Hate to think about it sometimes.  Don't know why God picked me to make it.  Inside the whole time I had the spirit telling me I might just make it, and I did-no fancy dancy pants treatments either. Last 2 surgeries were just the necrosis and dirt from the zappin.  I got ma life together went back to fixin cats and dogs.  Me and ma wife started a business (see here)

http://gsvmobile.com/

the day after my last brain surgery somebody called to make an appointment I answered the phone from my hospital bed(no lie) and told them that I wasn't going to be available for appointments but they waited.  By that point I came to realize that melanoma was more like a chronic disease that you manage and hope for the best and just keep on living.

Then we had a chitlin named Jedd-see here

(got to scroll down a ways)

https://www.fredhutch.org/en/news/hutch-magazine/2013-12/revolutionizing...

Best little critter you ever did see.  The little house we bought after the weddin(600sqft-literally we had to walk outside to the basement to do laundry) and brain cut #3 didn't hold up to the critter so we wrecked it to get him a proper bedroom (see here)

https://www.youtube.com/watch?v=MeidUhsc5_Q

and had a new one delivered on the back of a truck.  See here.  

https://www.youtube.com/watch?v=XQbR8CUfKUk  

Life is good again, despite terrible odds I made it-even without the new treatments available.   If a clown like me made it, you can too, keep on pecking away at it.  As time goes on, the more I read, the most helpful things you can do for yourself are, keep active(you want to be able to get out of bed every day, crunches and pushup are helpful, and over time, melanoma can really wear you out., have a low stress level, eat in moderation a wide variety of food low fat/red meat hight in vegetables and grains-there is a new superfood everyyear-so don't pin your hopes on cocoa milk, keep your eyes open for new treatments, surround yourself with good doctors and a good support group ( I used to have my e-mails tuned to google alerts for melanoma survivors and new trials on a daily basis).

Despite change of treatments, the one thing I can say is that the people fighting this beast today are as tough as in the past.  Luckily there are more people sticking around.  I hope there will be even more going forward and the people on this board continue to improve the statistics to the point where unless you deny all treatments(or kill yourself) you have no excuse but to be alive.  I'm also happy to see that there are now a variety of less punishing new treatments in case it comes back-so I feel a little safer.  

I am also proud to say that I am now have had and beat the trifecta of skin cancers, Basal Cell, and Squamous Cell have been added to the list and crushed.  Oh and my derm biopsied a scalp thing which came back as ink (from my brain surgeries) I didn't even know they put them there but you learn a lot about yourself everyday.

There is life after(and during) melanoma treatment even stage IV with brain mets.  These days, I think about melanoma once in a while and tell my story to people (which even I cant even believe unless I feel the scars on my head)-only if they ask.  Meredith and I went on our first vacation in 4 years this March. I feel guilty wasting my oncologists time which could be more focused on treating actual sick people.  I now have old age problems like everybody else (had to get glasses for reading last year).  After 10 years you graduate-even from yearly checkups.  Jedd will turn 4 on May 5, and he is a true blessing. 

God Bless every last one of you and thanks for letting me live to post this.

John

I will leave you with this.

https://www.youtube.com/watch?v=Akec_5zCgso

 

       I am

the patient
Initial Diagnosis
June
Initial Diagnosis (year)
2003
Current Stage
Stage 4
Depth of Primary
1.2cm ulcerated
Treatment History

6-20-03 Resection of right upper back primary 13mm in depth. Clarks level 4 Subsequently had wle and sentinel lymph node biopsies (neck and axilla) which were negative(actually diagnosed w/melanoma on 30th birthday!)

1-30-04 Adjuvant cancer vaccine trial at the University of Virginia (Mel 43/without GMCSF)

09-07-04 3 new left lung lesions ->VATS resection. Pathology + for melanoma

01-10-04 tadpoles on ice.

10-11-04 3 New tumors left Hilum, treated w/6 cycles of Biochemotherapy, Cisplatin, IL2, temozolamide, INF, and vinblastine. Initial Partial response had subsequent disease progression

11-14-05 HD IL2 therapy x 2 courses. tolerated 10,8,7 and 3 doses during each cycle

05-04-06 left pneumonectomy complete excision

07-01-06 GMCSF injections

08-20-06 Brain tumor nodule 7mm left side SRS surgery performed

09-15-06 Attended Kushi Institute and started Macrobiotic diet.

10-01-06 repeat MRI initial tumor increased in size w/hemorrhage 2nd tumor in right frontal area

11-01-06 craniotomy and removal of both tumors followed with adjuvant Temodar therapy 1st tumor dxed as radiatoin necrosis not recurrenc on path.

01-01-07 recurrance of right frontal tumor. Both tumors craniotomy re-explored and removed followed by adjuvant Temodar and radiation boost

10-01-07 new tumor in falx cerebri Tumor removed via craniotomy. SRS to surgical site to prevent recurrence 2 weeks post op.

2-25-08 Recurrence or radiation necrosis in area of falx cerebri surgery. Surgery scheduled for 3-11-08 removal. No new evidence of disease in CT chest Abd since left Pneumonectomy. (May of 2006)

3-11-08 Tumor removal. Confirmed as new tumor as per surgeon. Not radiation necrosis. Pathology pending.

3-20-08 Fit for radiation mask and boost. Further consult w/Radiation oncologist 3-11-08 mass was marginal miss recurrence due to SRS boost. Thats why Radiation boost decided ATT.

6-16-08 MRI of brain, CT of chest abd/pelvis equals ALL CLEAR/NED.

8-01-08 Severe headaches head/neck. MRI of Brain/neck shows NED.

9-22-08 MRI shows possible swelling @false cerebri? approx 2cm in diameter

9-29-08 Craniotomy #5 radiation necrosis!

11-10-08 collapsing episode/partial seizure put on dilantin 300mg/day. currently doing fine MRI equals all clear.

01-07-09 partial seizure MRI equals NED. increased dilantin to 400mg qd.

02-12-09 Feeling very lousy, blurry vision, colors changing when reading, nausea, ataxia. MRI equals no change. Dilantin levels elevated. Switch to Keppra.

6-01-09 Still Seizuring on Keppra(actually moreso). Epileptologist upped meds to 1500mg BID adding lamictal hopefully tapering Keppra

ALL SCANS CLEAR > 1 YEAR

8-06-09

On Keppra 1500 mg BID, + Lamictal 150mg BID, CT and MRI clear

11-05-09 1250 Keppra BID, Lamictal 200mg BID, MRI clear.

seizure free since July.

03-04-10 CT/MRI negative! No seizures since July!

06-17-10 MRI still clear driving privileges restored.

08-30-10 weakness on Lt side, MRI shows edema in area of rt frontal lesion.
09-02-10 craniotomy # 6, residual tissue noted on path, final results pending.

09-07-10 Manliness evaluation: Shooting Blanks/luckily have tadpoles on ice.

09-15-10 Path of brain tissue negative.

10-08-20 CT Chest Abd Pelvis Clear

1-6-2010 Brain MRI much improved.

5-5-2012 Jedd Andrew Gallagher born! no melanoma since 3-11-2008

Doctor
Jedd Wolchok
Treatment Center
Memorial Sloan Kettering Cancer Center

 

Insert Generic Inspirational Motto Here

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KittyFisher's picture
Replies 4
Last reply 4/4/2016 - 3:45pm
Replies by: KittyFisher, Linny

Hi all.

I was diagnosed with melanoma in 2011. I had a wide local excision and had my lymph nodes removed after a positive sentinel node biopsy. The other nodes were not affected and that was that. I carried on with life as normal and only ever remembered the melanoma when I had to go for my checks. A lump came up about 3 months ago where I had the lymph nodes removed. I've now had a ultrasound and needle aspiration biopsy on the lump and am awaiting results.

I didn't worry last time and it hasn't bothered me since, but now I have a little boy so things are very different for me and I can't help but worry that I could get bad news.

I'm wondering if anyone has any experience of a similar situation? Is it likely that it could return where I had the lymph nodes removed?

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Moley4193's picture
Replies 3
Last reply 4/4/2016 - 2:36pm
Replies by: Gene_S, Anonymous

I do not have melanoma or at least I think I do not have melanoma.    I spent most of my childhood in the sun with no sunscreen. I was a lifeguard, golfer, surfer,  cross country runner... so most of my life was outdoors.   I can remember a few bad burns but for the most part I would tan and tan easily.  No one in my family has ever had melanoma. 

I am 36 years old and have always had alot of moles.   I may literally have 150-200 on my body and this has recently started to bother me.  Most of my moles are smaller than a penicl eraser.   I have had 4 moles removed in my life.   One turned out to be a sebhoric keratosis, the other a mildly dysplastic nevus and the  other was a spitz nevus and the other was completly normal. 

I had one dermatologist tell me my risk for melanoma is no higher than anyone else and wanted to see me every year. 

I had another dermatologist tell me I had a slightly higher risk because of all my moles and wanted to see me every year but once my mole came back as a spitz nevus he has be comming back every three months. 

My question is am I at a greater risk for melanoma becaus of all of my moles?   Also almost none of my moles are perfect circles and none are the same color ( they are all brown but different shades of brown).

Does this mean they are dysplastic nevus ?  None of my derms brought that up but when I look at them.  For the most part I am more concerned than my dermatologists.  

With so many moles would it be benificial for me to go to a pigmented lesion specialist ?   I have the university of Penn close by ?  

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CCampbell's picture
Replies 2
Last reply 4/4/2016 - 2:32pm
Replies by: Janner, Anonymous

My six year old had what the dermatologist suspects to be a spitz nevus removed from her left hip on Friday. I may be putting the cart ahead of the horse, but want to be cautious and proactive. From what I've read, diagnosing and differentiating between a spitz nevus and a melanoma is very difficult, which is very unsettling for me. Given that information, I have a couple of questions:

-What is the best route to getting a definitive reading on her biopsy? Getting a second dermatologic pathologist to read the slide? Is here something more concrete that I can request? Would they do a lymph node biopsy for just a suspicion given the spitz nevus?

-How do I go about getting a second opinion with a pathologist of my choice? We're in central Illinois and I don't see any pediatric melanoma specialists near me. I would like to have it sent to St. Jude or Dr. Bastian of possible.

 

The thought of a misdiagnosis and just letting melanoma lie in wait terrifies me. Any advice is appreciated. Thank you.

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Patrisa's picture
Replies 2
Last reply 4/4/2016 - 11:23am
Replies by: kpcollins31, geriakt

Hey guys...

 

I just registered, but i have been following your stories for quite some time now..... It really helped me, knowing that we (my fater to be precise) are not alone.....

 

My fathers story began on October 2012, when he felt an itch and began to scratch his back like a mad man... I took a look at it and saw a black mole on top of his excisting (don t know how to say it in english) "growth" he has had his entire life.. He went to check it out and dermatoligist said it was basal cell carcinoma, nothing to really worry about.... Well, it turned out to be melanoma.....

We were so shocked, we knew nothing about the disease, except that it was deadly.... The surgeon went it the sencond time and did a wider excision, along with taking the sentinel node, which came back positive, and after that the removed all the limph nodes from his armpit which were all negative..... His stage at the time III3

He then went on Interferon and managed to take it for the whole 12 months (first month was brutal) and every doctors visit after then was OK. I have to mention that every visit to the doctors was just S -100 check and phisical exam... Nothing else....

Well, ffwd, last summer I noticed a bump on his back, fairly close to his original place of melanoma and i freaked out... He went to see a dermatologist and they assured him it was ateroma and scheduled him for operation 6 months from then....  I was kind of releived, but in the back of my mind i always thought it might be melanoma.... In november 2015 he had his regular checkup at the oncologysts and he did a biopsy, just to be on the safe side (he said its probably ateroma) and it came back posivite.... After CT, we realized he had mets in his lungs and were devestated.... We knew nothing about new treatments, just poor statistics for chemo and thats it....

BUT, luckily, he is not that old and doctors offered KEYTRUDA.... that was the first time we ever heard of it and of course we took it....

He started Keytruda on Jan, 25 this year and today received his 4th dose.... His blood works are excellent, his biggest tumor (5x5cm) is at least 70% gone, and the smaller one dissapeared..... His first CT will be in a couple of weeks, but we are quite optimistic that the lungs could be cleared too.....

I have to say that he s a real truper, positive, goes hiking every day, easts 90% healthy, drinks aronia juice every day and has no side effects of Keytruda.....

He is just a little anqsious about excercise, he thinks getting a lot of oxigene to the body, on the one side helps, but helps cancer cells to live too? What do you guys think? To excercise or not?

Thank you for beeing such a wonderful place, where one can come and really feel at home and somewhat hopeful.... Many of us come here and never post, but we cheer for each and every one of you!!!!

 

P.S. I apologize for my not so perfect English, but i know all you wonderful people don t really mind... :-)))) 

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/3/2016 - 10:45pm
Replies by: Maria C, Anonymous, Scooby123, Janner

Hello! 

 

My mother was diganosed last year with vaginal melanoma.  Had surgery, tried that chemo combo cisplatin/temodar, but it really messed her bloodwork up, so she had to stop.  We just found out it has returned in several places.  We do know that she is NRAS positive, but Braf negative.  Trying to do a brief eduation for myself before we go to her appointment tomorrow.  I want to be fully prepared!

My question is this, becasue she is BRAF negative, would she be able to take Keytruda? Or is that not an option because BRAF negative? 

Any information would be helpful!

Thank you!

 

 

 

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Replies by: jennunicorn

So I had a mole removed in November as I was suspicious of it and around that time I noticed a mole on the sole of my foot but it didn't look too suspious at the time. Recently I found another mole, a new mole on my foreskin(awkward) so I've been monitering it. As I was researching I came across the type of Melanoma that appears on the foot and it reminded me of the one I had on my foot. I decided to take some close up pictures of the one on my foot and I litrally couldn't breathe, it looks very suspious to me and I'm really starting to worry because of how long I've left it. I don't know how long it's been there overall.

 

I measured it and it's around 2-3mm.

 

Here's images hopefully soemone has some insite. I'm going to the doctors monday to get them to refer me to a derm. 

 

http://imagizer.imageshack.us/v2/1024x768q90/922/FeiUDp.png

 
 
 
 

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Bobman's picture
Replies 10
Last reply 4/3/2016 - 12:44pm
Replies by: desertsun, Bobman, Anonymous, DZnDef, Janner, JuTMSY4

I will have the sutures  removed this Monday  from primaries  8,and 9. Primary  number  7 was just a few weeks  earlier .  In the meantime,  I have several  new lesions  popping  up all over. Forehead , neck,back,legs,and abdomen . They all look as funky as can be...a few dark as coal. Even among my sea of a typicals the new ones stand out. I saw my primary  care nurse practitioner  on Monday ,who helps with biopsies  between  visits to the dermatologist .  I told her I  am now experiencing  fatigue  like I have never known .  She asked me what the oncologist  wanted to do,and I explained  that he said nothing  he could  offer until I reached  a different  stage. He did send me for a pet/CT scan  a couple  of years  ago when I was on about my 4th,or 5th primary , combined  at that time, with put me on the floor pelvic bowl  pain. I lit up both scans in exactly  the same area  of my pain. Was scoped front and back,with nothing  found,and in general  have only experienced  that same pain a few times since. She suggested  another  pet scan now.

I am totally  confused  as what to do here. Technically  I  am still stage 1,but something  is definitely  going on. I've  only  been  on this road for 5 ,or 6 years  now but the changes  on my body  are speeding  up. If I had Mets to anywhere  would  I  still  be throwing  out all these InSitu , and stage 1 lesions ?  My surgeon  actually  said to me after primary  number  7 that I was a ticking  time bomb. I actually  appreciated  the comment , as it seemed  real,and mirrored my thinking . Then a week  later we were  at it again , and most  likely  it's going  to be repeated  in a couple  of  weeks . .....wtf ?

Appreciate  any thoughts  on this you all may have.

Aloha , 

Bob

We are one.

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mary1233's picture
Replies 2
Last reply 4/3/2016 - 12:37pm
Replies by: Maria C, Scooby123

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