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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Anonymous's picture
Anonymous
Replies 13
Last reply 10/13/2014 - 7:09am
Replies by: Squash, DZnDef, Manfred, Carole K

Hi Everyone

     I was once a regular on this board and I cannot  tell you the amount of support I got here. I was here for about 8 years religiously and then when I became a Grandma I was and still am very busy... now four grandchildren and number 5 on the way.... all 6 and under.  They are the love of my life

     I apologize ot all of you I haven't been here.  I know how hard I held on to the positive stories from other patients. My story is not any different from any of you.  In fact I have probably had an easeir journey in many ways than most.  The uniqueness is I am 13 yeas 9 months NED after lung and brain mets...NEVER EVER EVER GIVE UP HOPE.

     I was dx n 1995 StageII from an ulcerated mole on my back.. Misdiagnosed originally--- the derm told me I had an INFECTION....  I went back weeks later --- mole was still blleeding..  He kept vascilating back and forth whould I or shodn't I do a SHAVE biopsy.  MY comment was , if in doubt don't do it...  Then again I was very naive at the time.. NOT ANY MORE...  I got a call the following Monday..  saying You have Malignant Melanoma and it has spread.  Here is the surgeons name.  I wasnt it removed no later than Fri.  and you will start chemo the follwiing week.. good nighr have a good evening. Sure youo  _ _ =_ _ _  _ !  After compossig myself I decidd to go to Sloane Kettering,.  Long story short..  Stage II.  My oncologist, thankfullly took the wait and see approach, seeing him more frequently.  the only treatment at the time was INF.. He was not conviced he liked the treatment esp. because of the side effects,  No treatment  just follow ups Sadly my oncologist went into the private sector shortly after I was dx iwith Lung Mets almost five years later.  I flew to JWCI where lungs mets were confirmed .  Both Sloane Kettering and JWCI wanted to remove my rt. lung.  ( I had lessions in both lungs)  OK if I do that what ifffffffffff   the other lung developed more lessions.  ? 

     I am not sure why but I decided against the surgery.  I stared seeing Dr Raymond Chang, an alternative dr. trained at sloane Kettering..  I saw him for about six months and during tht time took herbs he had given me.  

     At his recommendation I started seeing Dr Abraham Chachoua at NYU Langone Medical Center whos is still my oncologis... He ordered complete body scans and when the results came back--- still with the lung issue, he decided to do a brain scan. I tried to reassue him there was matter up there.  Scan came back positive.. MRI confirmed   BRAIN MET.  I knew I was in trouble.  I opeted for gamma Knife-- the tumor Burst and Bled...  GK no longer an option  I had the tumor surgicaly removed the next morning  

     TREATMENT DECISON TIME  GRRRR.  I had alrady been so involved in the Melanoma community and knew my options.  There was nothing other than IL 2 that would give me the best chance..  

     All of that beig said ---Not sure it was FEAR or FAITH...  I had accepted  the inevitable and had my talk with God the night before surgery.  I said  God it its your will for me to come home, please make it quick.  ( I had just been through a horrible divorce for four years, which the stress is wht i believe bought on my  original dx and two recurrences )  I then said  If it isyour will for me to remain on this planet, I will do all I can to help others on their journey.  Not sure if I am still hee for that reason or God decided I would cause too much havoc so he decided to leave  me here..  One thing I have never done my entiere life is asky why somehting  happened to me.  .  i believe things happen as they are supposed to.  All I have done in the difficult times is ask God to give me the strength to get through it.. He has NEVER LET ME DOWN.. I may not have gotten wht I wanted ut I alwasy got what I needed.

      Before I go any further I want everyone to know.. I AM NOT ANTI CONVENTIONAL MEDICINE at all. I  jsut decided to do alternative medicinee because I wanted QUALITY OF LIFE, NOT QUANTITY.....    

     I went on a pretty strict macrobiotic diet, ( my naturopath-- also had me on a vitamin regiment.  I also decided to do Iscador,  more commonly known as Mistetoe therapy combined with two other herbs.  I did thias for almst two years..Within a few monts thee weent' any mrre lung lessions and I have remained NED since then.  In all these years I have never met anyone else who did Iscador until a few months ago.  A young woman in Maryland combined hers with her INF tratments.  She also is NED but suffers side effects from the INF.  Just as a point of information.. ISCADOR  was prescribed by an MD who practices anthroposphy and other alternative medicines combined with conventional.  

     The one thing I want to lave you with is this

TRUST !!!! YOU !!! will make the DECISION THATA IS RIGHT FOR YOU.. Never ever look back, alwasy look forward with HOPE  AND OPTMISM, BELIEVE IN YOUR HIGHER POWER  and TRUST.  NEVER EVER EVER GIVE UP HOPE.

My thoughts and prayaers are with all of you.

Love and Light

Carole

 

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Anonymous's picture
Anonymous
Replies 13
Last reply 10/10/2014 - 2:14pm

My son had 4 infusions of ipilimulab every 3 weeks through a trial -canada. First CT and PET after the treatment phase showed lymph nodes in his neck were again compromised. His initial mole was on his scalp. He had SNE and a second surgery before starting the trial to excise more lymph nodes.

He met today with the surgeon and he said that The last excision biopsy showed that one lymph node had melanoma. He has an appointment with his oncologist at Princess Margaret Cancer Centre next week and radiation will be discussed together with how to continue. He is BRAf positive. He is 27 old and overall very healthy. He did not experience too many side effects from IPI but fatigue + night sweats ended.

many wonders in my mind: is he having a slow rsponse to IPI? Should he continue with the maintanance phase of 4 infusions every 12 weeks? We are very hesitant about permanente side effects of radiation? Is having radiation an impediment for having more treatment or trial options? 

Thank you for your input in advance

M

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hyb222's picture
Replies 6
Last reply 10/8/2014 - 8:38am
Replies by: Janner, Carole K, hyb222

I had a weird mole on my thigh that changed a little last year after sun exposure and then rapidly changed the last 6 months as I began trail running. I had a shave biopsy that came back as an ASN but couldn't rule out Melanoma. I had  WLE that has come back clear but they STILL cannot tell me what I had...basically...we won't say you had melanoma but we are treating it as if it were. A pat on the back and hearty, "see ya in six months". They never even did a full body basic check. I have a spot that looks perfectly normal (just like the one did a year ago before it was excised) that had sharp pains underneath this weekend. Very similar pains were under my ASN. I guess I just don't have peace with "we got it out...but we aren't sure what 'it' was". If I post my pathology report, does anyone have an interest in seeing if they're familar with the terms?

 

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Bulldogs81's picture
Replies 6
Last reply 10/13/2014 - 8:11pm

On 9/16 I had a mole on my forearm. On 9/24 my derm called and said it was melanoma in situ. She said that she sent it to the university of Chicago for a second opinion, who agreed it was in situ. She scheduled me for an appt for a wle the following Monday 9/29. I went, and the surgeon seemed to have taken a big chunk of my arm out. The scar is about 3 inches long and looks like skin is drooping inward.

 

Anyhow, a nurse from the surgeons office called today with the results. She said that the results came back today from wle and that it looks like they are going to have to a second excision. I was at the grocery store and caught off guard, because I was not expecting bad news and was so shocked that I did not ask a lot of questions. They wanted me to come in this week for second surgery, which is not possible for me so I go next monday. 

I called my derm so she could explain it to me and am waiting for a call back. I am so confused. Does this type of thing normally happen? Or does it mean the original diagnosis of in situ was incorrect? 

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kentuckycat's picture
Replies 12
Last reply 10/8/2014 - 2:08pm

Hi,

 

I had a nodular 3.5mm primary melenoma  on leg 18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  I was then on the ipi vs interferon trial and randomized into the 3mg ipi arm.  I completed ompleted the first 4 doses every 3 weeks and then 4 more doses at 3 month intervals.  This was completed in July.  I just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy was done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  I have looked into some clinical trials and it seems there is one with anti-pd1 but it requires no previous use of ipi.  However in looking at some of the infromation on this site, it seems others have been stage 3 and gotten some systemic treatment.  Is IL-2 normally available for stage 3c?  Thank you in advance for any suggestions.

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rick1981's picture
Replies 3
Last reply 10/7/2014 - 3:03pm

Hi everyone,

It seems like progress on cancer/melanoma treatment is moving at an incredible pace - which is a good thing. When my wife was diagnosed with Stage IV in June, our oncologist referred to Nivolumab as that "wonder medicine" he'd which he'd have access to - and only a couple of months later Pembrolizumab has been approved in the US and Expanded Access has open in Europe and Nivolumab is not far behind.

It's great to have options after the BRAF/MEK inhibitors (or in the future maybe as first line), but it thought it would be good as well to think even further out and look at what medicines may be next up in the Big Pharma's pipeline - so we can discuss this & potential trials with our oncologists.

So therefore this topic :)

(If it already exists, please point me in the right direction and this one can be closed).

The two melanoma medicines that have come to my attention very recently are:

BAVITUXIMAB: http://money.cnn.com/news/newsfeeds/articles/marketwire/1149321.htm. "statistically significant tumor growth suppression compared to anti-PD-1 antibody treatment alone in an animal model of melanoma". Trial with Yervoy/Ipi being started.

LIRILUMAB: http://www.mskcc.org/cancer-care/trial/12-224 Trial with Nivo. Ashley here on MPIP has mentioned this trial.

Good to know who's on these trials, what other medicines are being tested - and in the future to keep each other posted on Trial outcomes.

Best regards, Rick

 

 

 

 

 

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JustMeInCA's picture
Replies 10
Last reply 10/11/2014 - 7:21pm

My father, who will be 83 in a couple months, is Stage IV with several tumors in the area near his knee, which was the site of his primary tumor. He also has a few small mets in the lungs and possibly (probably) one on the hip bone. He's had two Ipi infusions, the last a week ago and so far without side effects, and will start Keytruda in two weeks.

While he has what he calls "some discomfort" in his knee off and on throughout the day, he is mainly suffering pain at night, which keeps him from falling asleep. (Once he's asleep, though, he sleeps well throughout the night.) For the past few weeks, we tried Aleve, which did nothing, and then a prescription of Norco (5/325), which also did nothing. Last week, his doctor upped the Norco to 7.5/325 and said that he should take it every four hours to prevent, rather than try to stop, the pain.

Dad is not one to take painkillers. He had a sextuple bypass about three years ago and refused any painkillers once he left the hospital. He was resistant to even taking Aleve when the melanoma tumors began to hurt, so I know his leg is really bothering him, given that he's been willing to even try all these pain pills. 

Now, however, since  the higher dose of Norco is not helping with the nighttime pain, he has been prescribed Oxycodone for daytime and Oxycontin before bed. We haven't filled the prescriptions yet, and I'm really wondering if this is the right route to take. Dad doesn't want a stronger painkiller, and we've both noticed that since  he's been on the 24-hour pain regimen, he just kind of zones out in his recliner, where before he was out in the yard and making his little trips to the dollar store. He says he feels dizzy off and on now, and he's definitely a bit cranky.

I'm concerned that the new pills will just make things worse. I've been the one pushing him to take painkillers because I hate to know he's hurting, but now I feel bad because they've really stolen his joys in life. I also worry about the Oxy's because of his age. I feel like maybe I should just let him handle things the way he wants to, even if that means not taking any pain meds. He's more than willing now to take a painkiller before bed, but the way it sounds, this Oxy stuff has to be taken around the clock or not at all. And the nurse also told me that pain taxes the immune system and leads to poorer outcomes.

Any advice or input would be much appreciated. 

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Hello,
 
As the subject says, I need the below explained please.
 
Mole biopsy report says:
 
"within the dermis, there is a moderately heavy lymphohistiocytic infiltrate including melanophages"
 
What does this mean? Is the presence of melanophages normal?
 
Thanks in advance.

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On 9-4-14 I had a melanoma removed from my scalp.  The initial biopsy suggested its thickness was .49mm.  However the path report showed that parts of it were 7mm thick.  The margins were clear.  The location of the sentinel nodes made removal impossible w/o major surgery, so the node removal attempt was aborted.  Subsequent PET CT scans showed no evidence that the cancer had spread to nodes or organs.  At this time, my doctor has not seen BRAF reports from the path study, so he does no know whether I am a candidate for certain clinical trials.  If I do not find a suitable clinical trial, he will most likely recommend year-long interferon treatments, although acknowledging that it is questionable whether benefits outweigh the probable significant loss in quality of life during treatment.  I'm also considering radiation therapy at the removal site and neck area where sentinel nodes are located, but this therapy is on hold because starting it would disquallify me for clinical trials. 

Any thoughts??

g_booker

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Ashley's picture
Replies 8
Last reply 10/20/2014 - 3:03pm

Hi,

My dad has stage 4, and just started on a combo trial of nivolumab and lirilumab.  Since starting his LDH has been dropping... I don't want to get my hopes up, but at the start it was 400, after the 1st dose it went to 397, then 348, and today 260 (normal range 110-210).  I'm hoping this is a good thing, but just looking for some feedback :-)

 

Thanks,

Ashley

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TinaB's picture
Replies 5
Last reply 10/6/2014 - 7:58pm
Replies by: Bubbles, BrianP, RJoeyB, TinaB

Hi

A year ago I returned home from a 10 day business trip to find the "depression" symptoms my husband (we were only married for 8 months) was displaying had worsened. I started a concerted fight to get someone look at it seriously. He was very apathetic, so I had to cajole, connive and lie to get him to a doctor 3 times in 8 days. Finally I had him admitted to a psychiatric clinic and the psychiatrist decided on an MRI - Thank God!. She told me not to worry, there is a 1% chance of it showing anything, but that was the moment I knew - he has a brain tumor. I was right...(sometimes it is awful to be right!). He had a 5.3X5.2 tumor in his right frontal lobe with severe swelling of the brain. During the two days we had to wait to see a neurosurgeon he deteriorated rapidly - paralysis, confusion and just total incomprehension. He became a little boy.

On the 23rd of October the surgeon removed the tumor. Then two weeks of silence. I kept on asking about the histology and just got silence back. Finally the doctor saw us to remove the staples from the craniotomy. But his first words to my husband was: "Take off your shirt." I knew. Melanoma.

He had already set up an appointment with a radiation oncologist for us for the next day. This is why he waited so long to give us the histology results. There was no time to look for a second opinion or to do more research. I was panicky and hubby still apathetic. The radiation oncologist (telephonically) informed my husband (who couldn't care) that he is changing the radiation treatment from SRS to 3D conformal radiation therapy. I couldn't get answers since I am not the patient. He had 5 sessions of radiation - how much I don't know - because I am not the patient.

I started hunting for a medical oncologist and finally found one through my husband's nefrologist. He is one of only 10 in our country! It seems patients are by default sent to radiation oncologists since there are so few physician-oncologists. Never mind a melanoma specialist. (Our country has the second highest incidence of melanoma after Australia). This doctor is great! Yet he only offered watch and wait - it would have been our preference too. In the mean time he has had MRIs every three months and is due for a PET scan in November. So far No Evidence of Disease! Thank you, thank you, thank you.

How is my husband doing? He sleeps most of the time, he is sometimes confused, he has developed epilepsy and is on two different medications, he has stage B chronic kidney disease, he has short term memory problems, there is something wrong with the way he walks, he has very little interest in anything outside the home. The way things look now, he will never work again. He even forgets to water the plants.

The man I married only 21 months ago is gone. Gone is the highly intelligent, very musical Maths genius with an acute social awareness. In his place I have a little boy eager to see me, who pines for me when I'm at work. I get nervous when we are in social situations, since he is bound to say or do something completely inappropriate. Some days are better than others. I still love him with all my heart and will always take care of him!

Currently I just feel overwhelmed and alone. I stopped talking about all of this to friends and family - thinking they must feel I'm always complaining. Financially it is a struggle, we both have college aged kids from previous marriages and just my income. Luckily I have very good medical aid (medical insurance), but I still have to contend with ever increasing cost of living and the realities of living in this country.

I am reliving every moment of one year ago. I am double guessing myself. Most of all, I think I should have stopped the radiation therapy - I suspect that is the reason for his current state, and why his confusion is growing. Suddenly I cannot stop crying...

I am grateful that he is with me and "healthy", I am sad that at 52 he is suddenly a very old man. I am truly glad I knew him before he got ill. I am all in all happy to have him around and to care for him. I just really wish I can have him back the way he was...

Now I'll dry my tears and cook a nutritional supper, while doing some work in between, because I fell behind today what with all the feeling sorry for myself!

 

 

 

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G-Samsa's picture
Replies 2
Last reply 10/6/2014 - 3:12pm
Replies by: kylez, BrianP

Recap:  My last treatment (Nivo/IPI) was withheld based on scans which indicated some growing unknown in my lungs...I have melanoma there (and pretty much everywhere else), but it has been stable for about a year and a half.  There were a number of possibilities -- with the most likely being a  cumulative reaction to the drugs (but the rearing head of melanoma not ruled out)

Resolve

 

Seems after an interim scan the docs are confident I have been reacting to the NIvo.  This seems to have been bolstered by the inflammation of my joints which was becoming extreme by the time I stumbled into the office for the verdict/checkup.  The reaction in the lungs seems to have hit its high water mark already and the joint inflammation is being dealt first with Aleve and if necessary steroids.  ( whether I get my final treatment, scheduled in  six weeks is up in the air). 

If there is something to be learned by the community here, it may be that pneumonitis and joint inflammation are beginning to be seen as "classic" symptoms of Nivo taken over time.  I was told of a number of instances, including someone who had never reacted to the drugs until the last treatment, and then had a fairly extreme reaction requiring hospitalization.   There's a lot of experience in the facility where I am treated so this is good to know about .... I've heard again and again that the Nivo is Ipi's benign cousin.... but it's  a powerful drug nonetheless. 

 

 

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Patina's picture
Replies 1
Last reply 10/7/2014 - 1:55pm
Replies by: Anonymous

Very off topic...

I saw a spammy post again tonight and wanted to ask if anyone knows if there is a process to report them in order to have the posts taken down and the user account deleted? If there isn't a process for this feel free to send me an email and I'll at least I'll report them to Google.

I reported the site gojivitabr.com referenced in the post from yesterday to Google via Webmaster Tools. - I do online marketing for businesses and report links/site as spammy when I find them...

Here is the post I mentioned: "Because I was just too tired"

 

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Anonymous's picture
Replies 2
Last reply 10/10/2014 - 6:46pm
Replies by: Anonymous

Nodular 3.5mm primary melenoma  on leg18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  Was on the ipi vs interferon trial and randomized into the 3mg ipi arm.  Completed all 8 doses of ipi in July and just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  Thank you in advance for any suggestions.

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