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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rrrule32's picture
Replies 10
Last reply 11/2/2012 - 12:03pm

Hello All,

My fiance, Kaitlyn, has been on Zelboraf since July 20.  Well, last week we started noticing some new growths in various different areas.  Not only that, but they seem to be growing fast. 

Now we're trying to figure out what's next for her?  Are there really any other decent options?  She's been on IL-2 and Ipi.  She also has 5 brain mets that were stable as of September 20, but who knows anymore now that she is progressing again. 

Has anyone tried the combo of Temodar + Ipilimumab?  I'd like to do that one because Temodar gives fast relief, and Ipi can build the immune system up.  When she was on Ipi, it actually did start working, but because of complications with her brain mets, she had to be taken off of it.

Any advice would be greatly appreciated.

Thank you,

Travis

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amandamini's picture
Replies 7
Last reply 11/2/2012 - 10:47am

Hi all,

 

I was diagnosed in Oct. with stage 2 clarks level 4.  I had my SNB and WLE and all was clear!  That was great news.  My plastic surgeon then referred me to an oncologist to get a PET scan.  Today I met with the oncologist and was surprised to find out that he recommended me going on Interferon for a year.  What can I expect as far as side effects?  Please let me know your experiences with this drug. 

 

Thanks for your help with this!

Amanda

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awillett1991's picture
Replies 5
Last reply 11/2/2012 - 10:02am

Just finished 2nd dose of Ipi and diagnosed today with 2 brain mets - 4 mm and 6 mm. Bummer since only been off Zel 4 wks and was told brain was all clear. Anyone have experience with doing radiation in between Ipi treatments? I think there were some trials based on some effects they had seen at Sloan where radiation seemed to have turbo charged Yervoy and it then attacked the melanoma all over the body like crazy. Looking at SRS to zap these 2 critters as soon as possible.

Thanks.

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/2/2012 - 12:18am
Replies by: doriniel, POW

So just had my 6 month ct i have been off and on zelboraf for 15 months. I now have a subcutaneous tumor that has grown in size. I have only been taking zelboraf half strength due to side affects and only one week one and one week off. So here is my dilemma do i increase the dose and take it steady and suffer through the side effects (terrible feet and joint been, low energy, nausea) and give the zelboraf another go? Or do I switch to yervoy. or do I join a new clinical trail ( if any are available) any ideas. all other tumors are gone or are littler than previous only have the one that tripled in size.

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Caretaker's picture
Replies 18
Last reply 11/1/2012 - 4:58pm

Hi,

Been reading for a while; this is my first post. I'm caretaker for the most wonderful man in the world, diagnosed stage IV & metastisized all over his body at the end of June, including a tumor on each of his frontal lobes. He had a heart attack 3 weeks later, which postponed the start of Z until the end of July, app. 3 months at this point.

At first, Z was working like gang busters, and 2-month MRI, cat scan, and pet scan showed progress. His energy level was up,and he even gained a couple of pounds.

A couple of weeks ago his energy level began dropping slowly. Within the past week, he began behaving/thinking/not remembering as one who has Alzheimer's. His oncologist put him in the hospital Friday (when she came back from her vacation). His heart meds need recalibrating as his bp and pulse were too low, and another brain mri was taken. Today we found out he has "multiple new lesions" on the brain. We don't know how many, and this oncologist doesn't do hospital visits. (I know. I wish we'd known that when we started but we're pretty new in town.) He's losing weight again (app. 45 pounds total so far), no energy, and gets emotionally upset easily and constantly.

I'd like to know if any of you have had Z work for 3 months and then quit?

If this was you, would you try a different chemo? Would you try an alternative and, if so, which - Gerson's, baking soda and maple syrup, high dose Vitamin C, other??

And also, if this happened to you and Z kicked back in, please let me know that, too!

Thank you for reading, all, and please keep sharing your wonderful stories!

Peace,

Caretaker

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Hi everyone.

So last Monday they did a patch test with the DPCP on 3 different areas.  One of them had a reaction, so that means my skin' sensitized; Monday i will go in for application to all my many mets. 

they took 2 biopsies, and the bandage on one site caused such a bad skin reaction...so now I'm allergic to Benzoin, Mastisol (spray adhesives usually used before applying steri-strips) and some bandage adhesives. Next biopsy I'm going to ask for either surgical glue or a steri-strip with no spray. 

the reaction site from the DPCP isn't bad, not at all like the one Dave in So Cal got!

And in Hurricane Sandy news:  many  New York and New Jersey residents and even hospitals continue to have no power.  Long Island railroad is hobbling to start up and actually doing a very good job.  I live on Long Island and while I got power back yesterday, most neighbors continue to be without.  Midtown, Holland and Brooklyn Battery Tunnels remain flooded.  My husband was scheduled for revision knee-replacement this past monday; is now rescheduled for Saturday.  A colleague was scheduled for prostate cancer surgery; he hasn't been rescheduled yet and remains very anxious, as we can all well understand.

My colleague and I drove a distance to get the only LIRR train running this morning.  Once there, we got into Penn Station with no problem.  Others chose to drive in and spent 3-4 hours on the road!  streets remain closed with trees/power lines down. The roads have a very erie feeling and only about 1 in 50 gas stations are open.  VERY long lines at the ones that are open, and prices are being gauged big-time.  I hope someone cracks down on them, especially when other businesses (supermarkets, etc.) who don't have products to sell are letting people store their frozen foods in their freezers, giving away ice, etc.

I'll check in after Monday's DPCP application.

have a good weekend,

karen

Don't Stop Believing

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bekahboo82's picture
Replies 2
Last reply 11/1/2012 - 7:01am
Replies by: AngelaM, Janner

Hi all.  I just received the bad news that a lesion I had biopsied yesterday by my Dermatologist is a Melanoma-in-Situ.  This is now my second one.  I had my first one 3 years ago at age 27.  I am, of course, losing my mind with worry.  It might be a little easier if I didn't have a 3-year-old at home that I am not ready to leave anytime soon.  I heard it is rare to have more than one primary.  Anyone have this or heard of it?  How long am I going to be lucky and keep finding these at this early stage?  I feel like there is more going on in my body that is not being seen but I have not been successful in convincing my doctor to scan me.  Is it possible to go my entire life with only having Melanoma-in-Situs?  Is it possible to never have one spread beyond the top layer?  I'm sorry I know I am rambling I am just grasping for straws.  Thank you in advance for your insight.

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kevin2012's picture
Replies 6
Last reply 10/31/2012 - 6:23pm

Hello Everyone,

My wife is 19 weeks pregnant with our first child and diagnosed with melanoma last Tuesday.  It has been a very difficult time for mostly me - she has rock solid and positive as always.  Back in August my wife finally went to a GP to have the mole looked at - about the size of a quarter then and noticable bumpy.  The GP scheduled her for a biopsy mid-September with a plastic surgeon, and then last week he called my wife while I was at work, told her she had a type of skin cancer, referred her to a nose-ear-throat doctor for last Friday, assured her she "wasn't going to die or anything" and told her to call the nose-ear-throat doc to get the details.  She called the NET office right away, but they did not have any paperwork yet so we waited until Friday to be told that it was "a very bad kind" of melanoma.  Having very limited knowledge of what questions to ask (what stage?!!), we left the office in tears only to be referred to another NET doctor this Thursday (had to cancel our first ultrasound appt :( ) at a major cancer hospital in Toronto.  I have been learning more and more about this disease in the last couple weeks, from the thickness and size I can guess that her melanoma is stage II but there hasn't been any node testing to find out if this has metastasized.  I am deathly scared and feel that this is not moving fast enough - I have noticed the melanoma grow even since the Sept 18th biopsy.

My wife is wonderfully optimistic about the whole ordeal, but I just want to get the excision done - enough "consultations" already!  Is this the normal process?  Is there anyone I should be contacting?

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Maereard's picture
Replies 6
Last reply 10/31/2012 - 6:09pm

Hi I am new here.  Any information you can give me would be so greatly appeciated.  On Monday last week I was told I have malignant melanoma.  Breslow dept .25mm, Clark level 3.  Ulceration not identified and the volume of the dermal tumor was insufficient for mitotic index.  After panicing for three days thinking that the clarks level was the same as the stage, I came across a post on here that explained it is not.  That made me sleep a little better.  Originally when my dermatologist gave me the news he wanted to send me to a plastic surgeon to have a larger area removed.  The spot is located on my right shoulder blade.  The plastic surgeon could not get me in until the 24th, after showing up in the dermatologist office crying my eyes out he agreed to do the surgery himself this past Thursday.  I am currently typing with a railroad track of stitches down my shoulder:)  The original dermatopathology report was sent to my family doctor who has insisited that I see an oncologist.  I will see the oncologist tomorrow at 8:15.  I do not have the last results from Thursdays surgery back and probably will not until sometime next week.  I have a million questions and if someone could please shed some light on the darkness I feel right now I would be so appreciative.  The dermatologist seems to think this was found very early.  He says that the next test should come back all margins clear and I will just need follow up appointments to monitor for any new spots that might appear.  He thought originally that the family doctor would probably send me for a blood test and a chest x-ray.  I smoked when I was a teenager and thought it was cool.  I think the most I got to was a pack a week for several years.  I am now of course convinced that this means the melanoma has spread to my lungs.  I was not a sun worshipper.  I tried laying out for a tan and attempted the tanning bed a few times but it never worked in my favor so I gave up.  I have never been a huge fan of the sun because I burn.  I am an only child but come from a large Irish family and am the first to be diagnosed with this.  I have three children and currently am still nursing my nineteen month old daughter.  Does anyone know of a doctor that specializes in melanoma in Indiana or Kentucky?  I want to make sure I cover all angles in order to see my nineteen month old daughter grow up and go to college, get married, ect.  Has anyone has a breslow thickness as small as mine and still had to have lymph nodes removed?  Have they come back positive?  Has anyone heard of Dr. Stephen Schultz in Indianapolis, IN?  He is an oncologist with Community North Hospital but he does not have a website so I can not figure out how familiar he is with melanoma.  What state would I need to look in to find the best doctors?  Thank you for any help at all!

Beth Thompson

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rrrule32's picture
Replies 4
Last reply 10/31/2012 - 9:03am
Replies by: rrrule32, Theresa123, deardad, Anonymous

When the Melanoma tumors create a resistance to Zelboraf, do they become more aggressive than they were before taking Zelboraf?  Do the tumors grow faster once the Zelboraf stops working?

Thank you for your input,

Travis

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I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

Login or register to post replies.

I'm new to this website, and my treatment has been different to most, so far so good, so I wanted to get it out there.

I am 46 yr old female from Christchurch (New Zealand). In 2006 I had a melanoma removed from back (1.7mm). Had no probelems for 5 1/2 years when I discovered a lump on my side, turned out I had 3 subcut. tumours an adrenal tumour and a tumour on the tail of my pancreas. I went into meltdown but managed to read everything I could about melanoma. The common theme I could see was that complete surgical resection seemed to be the best chance of changing the course of this dreadful cancer. I insisted on surgery (it took some doing). When my oncologist agreed, the adrenal tumour had grown very large and very close to my aorta. I then went on Z for just 7 weeks (not yet funded in NZ so very expensive) I had dramatic reduction in all tumours and my surgeon (Connor Saxon, my hero) agreed to remove tumours. I have had an all clear 3 month scan, and am about to get my results from 6 month tests (very anxious time), but I feel completely fine and don't let melanoma dent my hapiness too much at the mo. I have decided to keep as aggressive as I can. My thinking is that if need surgery again (if viable) I will be able to go back on Z and it should give me similar results, as my first tumours didn't have time to develop resistance. My Surgeon and Oncologist think this may be a succesful way of treating stage 4 and are currently writing up my case. I hope this helps some one....please remember it is now thought that complete resection of tumours is the vital part of surgery, the number of tumours removed is insignificant, in fact in recent studies I have read people with more tumours removed do better - who knows, maybe their immune system gets such a boost from having no tumours to fight, it goes into overdrive! 

Hope is a much more powerful emotion than fear.

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kellygrl's picture
Replies 14
Last reply 10/29/2012 - 7:51pm

Just wanted to share my husbands story.......   Aug 09 he had melanoma on his back, wide excision & sentinel node biopsy which came back negative for malignancy. So, in the clear until Mar '12, headaches which we contributed to stress due to his Air Force retirement, we moved, both started new jobs and bought a new house! NO STRESS THERE!!!  Then the start of the 3rd wk of these headaches, he threw up on Mon....  so got him to the doctor that day, MRI Thurs 3/22, then in the hospital about an hr later after our family practice doctor came to our home to tell us the devastating news that he had about 13 brain tumors. We got him to the hospital so he could be put on I.V. steroids, within 24 hrs he was back to his old self, had other scans & everything was clear.  

He then had a biopsy to determine if he had the BRAF mutation for Zelboraf...  yeyyy!!! He did, but before that, we gave WBR a shot...  18 treatments, melanoma fought back...  :( DEVASTATED!!!!!  Radiation did make him feel like crap after the 3rd week or so, but now we also think that may have been because the melanoma grew. :/ Other then that, no side effctes from WBR. Anyway, started max dose Z first week of June, severe sun sensitivity first few wks, few new skin tags that have fallen off, very minimal side effects & MRI 6wks later....  REDUCTION in ALL  tumors! Then labs for his liver were extremely high, off Z for a few wks, labs normal and on lower dose )3 pills twice a day...   even fewer side effects & next MRI  more reduction in the now only 11 tumors! 

My husband has been on Z for 4 mos, hair is coming back, feels great, looks great...  people just meeting him thinks he's in remission!  He's been back to work full-time since July 9th, takes a nap when he gets home, but who wouldn't want to do that.  :) He's been back to yardwork, helping with the house, etc..

 Now, I always wonder what kind of health people are in who are doing well, not so well, etc.....   my husband is 41, non-smoker, worked out atleast 5 days a week,  excellent health, we had always had a pretty good diet, but ate junk food here and there & of course the occasional cocktail... ;)   but since all of this, he has not had an ounce of alcohol, no soda, almost no sugar & hasn't had any fast food. We do not eat 100% healthy ,I try to stick the the basic cancer fighting foods.  We mostly eat salads with dark leafy greens & he LOVES tomatoes, antioxidant smoothies (berries, flaxseed), try to load him with lean protein and he's loving cottage cheese. We don't do a raw diet and we still eat meat, but it's not very often & he drinks a ton of water.   

We know people can build a resistance to Z, we'll cross that bridge IF we come to it, but for now we are just living life and enjoying it!! He feels great and we are running with it! So to all of you wondering about the brain mets....   for us it IS WORKING!!!!!  Hang in there, keep strong, BE POSITIVE!!

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aldakota22's picture
Replies 12
Last reply 10/29/2012 - 7:23pm

Had my 2 month checkup with Dr. Anna Pavalick at NYU Clinical Cancer Center.Very Happy news.As for scans that were done Aug.22 the conclusion is that "Z" is doing its job.There is only a trace of the disease.About 1% detected.Next visit is not till Dec.19.with scans not till late Feb.2013.I have been on full doseage of "Z" 13 1/2   months.I now can go forward wiyh wellness physical checking my choletersol.prostate exam and colonostophy.When originally diagnosed with stage 4 in late Feb.2011 primary doc did not even worry about any other  health issues.Now Dr.Pavalick insist on the phyiscal.We can beat this beast.Too those others who are fighting this disease and offer support it iis the greatest feeling knowing that i am not fighting this alone.Love the support from the cheer leaders who offer words of kindness .support and prayers,Thank God for all the loving family and freinds I have to fall back on in this time of need.  Al

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