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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Lisa13's picture
Replies 12
Last reply 11/1/2011 - 3:42pm

My scans were yesterday and results tomorrow after Yervoy treatment.  I'm incredibly nervous, but I also remain quite hopeful.  I've had a great few days - celebrated my daughter's 2nd birthday, went trick or treating with her and also went for a jog and felt wonderful. I was diagnosed 6 months with Stage 4 in my lungs and here I am jogging without feeling anything.

The fact that I feel pretty darn good has to say something, so I truly hope that all my wishes and prayers get me some good news tomorrow.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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cwu's picture
Replies 2
Last reply 11/1/2011 - 2:49pm
Replies by: cwu, FormerCaregiver

Today was not a good day for dad. Today is his 7th week and his ALC number went down. It was 1.58 berfore Yervoy, 1.98 at week 4, and today (week 7) was 1.5.  I know that ALC is a good marker for responders and it should double by week 7 so this is not good news. Is there anyone out there who had ALC number drop during Yervoy and still end up being a responder? How accurate is ALC as a marker? His oncologist was pessimistic today at his appointment, he said that he didnt feel that it is working as dad's lesions have gotten bigger and more have grown and he didnt see any improvements. But he recommended dad to finish the third and fourth dose. Dad got his third dose today.  I feel so hopeless and dont know what to believe.

Any advice is appreciated.  Thanks for your help.

Chau

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LynnLuc's picture
Replies 7
Last reply 11/1/2011 - 6:02am

Tomorrow I will got to Moffitt for the first derm appointment since a year before I was diagnosed as stage 4...the last "outside" melanoma was removed in 2000. I am also getting an ultrasound to check out a cyst on my adrenals which they feel is probably "nothing" and related to the Anti PD-1...which also blew out my thyroid...oh well such small price to pay to be NED.

I go Dec 14 for my 4th booster  of Anti-PD-1 ,scans and see Dr Weber.-Lynn  angel

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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kennedy's picture
Replies 5
Last reply 10/31/2011 - 11:11pm

(I'm desperate, please help me) I'm from Brasil, my name is Kennedy Wanderley, I am a simple banking employee with few conditions and natural from a city named Caicó-RN and living into the Paraíba state since 1985 (25 years) and I have only one son named William Kennedy of only 12 years old who has since the early age shown signs characteristic of what medicine calls dysplastic nevi (I think this is the name). Today at 12 years old I think he has more than 30 signs on the back (mostly) and some close to the chest.

I'm always worried about these signs because I noticed that a couple of them were growing up and blackening in the center with enlarged verticaly (plain before, now 2 or 3 mm high). Concerned with that, I decided to remove one on them with a plastic surgeon when he was about 7 years old (2007) and at that time I remember asking an detailed evaluation of it, but until now have not received a formal result, only verbal informations of negative result from biopsy material.

From that time on I've got more relaxed, but I always get attentive and demanding that my wife sought a dermatologist regularly to keep up me informed, but she relegated this situation. My wife has a salon within a medical center here in Campina Grande, Paraíba State called MEDICAL CENTER SAN PIETRO, where she has several clients who are doctors, including a three dermatologists. But what she tells me is that although almost all of them had already superficially examined the boy, including his Pediatrician, none warned of the danger of that kind of signs, despite our insistence that he needed to be examined.

Earlier this year (March), when we went five days on a beach, I noticed that one of the signs was irritated, half white and appearing signs of keratosis (I think this is the name). I was very worried and alerted again my wife of going to the dermatologist and she returned saying that as soon as we returned would look for one. With the difficulty in finding experts in Brazil and my carelessness the time gone by, only 15 days ago, I take a look acurately in the boy and took some pictures and then enlarge them, and investigate a little about melanome. Despite not being a doctor took a huge shock and I'm weak in the knees so far. Find a doctor friend of mine in the city of Joao Pessoa, Dr. José Romero (famous and experienced surgeon) who apparently was also alarmed and referred me to an oncologist surgeon in João Pessoa (PB) I'm going tomorrow 01/11/2011.

 I am very concerned and ask for the love of God that someone in the multidisciplinary  GROUP WHO STUDY  MELANOMA to give me some hope in the name of compassion, to monitor even at distance through the sending of pictures of the sings, examinations and details of the procedures to be adopted that I can send to you. I say this because it is my only child and I don't what to treaty him blindly with only one opinion. Please help me.

Moreover, I know you are attuned to the most advanced centers in the world and can leave me about news on the topic. Finally, I can only pray that this e-mail fall into very humane hands, pious and sensitive and also can give any small relief to  my family already suffering from lung cancer in my mother aged 77, and a vocal cord cancer in my father at age 73 and now a possible melanoma on my son with only 12 years old.

 FOR GOD'S SAKE, HELP ME. Follow the photos. Note: malanoma unknown cases in the family, but his mother is blonde with few signs and my mother is white with some signs and his maternal grandmother, also has many signs.

                                 

Thank you very much. God bless you.

 

kennedy wanderley de souza    

emails: kennedyw@bnb.gov.br or kennedy_wanderley@hotmail.com

https://www.facebook.com/#!/kennedy.wanderley              

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heg50heg's picture
Replies 1
Last reply 10/31/2011 - 10:22pm
Replies by: LynnLuc

Can just having a chest exray done detect melanoma spread in the body. After completing the chest exray today the technician ask me if I had a cough lately and I said no. She then ask me where I had melanoma at and I informed her it was on my arm and that I had it removed. I ask her if the xray looked good and she said she did not have acess to previos exrays to compare them. Just her asking the question she did made me nervous and that is why I was wondering if melanoma spots show up on regular exrays. Will be nervous now untill I talk to my Dr. on wed. again.

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cwu's picture
Replies 12
Last reply 10/31/2011 - 8:08pm

My father is going to get his third dose of Yervoy next Monday and so far it is so hard to remain hopeful this will work for him.  He has had side effects, some diarrhea, rash, chills, and major itchiness.  One of the reasons that it is so hard to maintain hope is because his lesions are cuteaneous, they are on his skin and we can see them.  Since starting Yervoy, he had a couple of lesions have dried up and fallen off but so far, they seem to multiply and get bigger every day.  They are also starting to move up his upper thigh area.  His leg is imflammed and swollen.  His oncologist warned us that while on the med, his lesions could get worse before they get better but it is so hard to have hope when all we see are lesions getting worse. My father gets depressed because he sees them getting worse.  Sometimes, I wish they were internal instead so we dont see them until the scans.  I try to focus on his ALC #s to keep my hopes up since they have gone from 1.58 to 1.98 after his first dose. I also read and re-read Vermont Donna's postings when I am down since she had cuteaneous lesions and is a complete responder.   

Chau

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Hi, I am new to the forum.  I have Stage 4 melanoma, and I am on my second go round with Yervoy.  I am getting more tumors, but the one causing the most trouble is in my stomach/intestine.  It is next to my aorta and vena cava, and the surgeon says it is risky to take out, but if he doesn't I could have complete blockage.  Has anyone else had this problem?

I am scared and angry.  I have had melanoma for 2 years, and have had so many problems.  I am getting tired of fighting.  The thought of peritonitis from a exploding bowel is not the way I want to go, however.

Thanks!!!

Every day is a miracle.

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Hi, I am new to the forum.  I have Stage 4 melanoma, and I am on my second go round with Yervoy.  I am getting more tumors, but the one causing the most trouble is in my stomach/intestine.  It is next to my aorta and vena cava, and the surgeon says it is risky to take out, but if he doesn't I could have complete blockage.  Has anyone else had this problem?

I am scared and angry.  I have had melanoma for 2 years, and have had so many problems.  I am getting tired of fighting.  The thought of peritonitis from a exploding bowel is not the way I want to go, however.

Thanks!!!

Every day is a miracle.

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Kosta's picture
Replies 6
Last reply 10/31/2011 - 7:13pm
Replies by: Kosta, FormerCaregiver, dearfoam, Anonymous

Hello everybody,
 

I have to say that this is one great place for support and information. First time posting and would like to share our experience with Dad's melanoma.
My father is 82 years old.  First biopsy came from a suspicious mole  on his right shoulder blade. Initial biopsy was done overseas (Greece) and I decided to get on the next flight out and bring him to NY. Thank God I did. Initial results in Greece showed 1.5mm on the primary tumor thickness. The same film brought to NYU was diagnosed as 6mm. immediately our Doctors at NYU called for PET/CT followed with lympadenectomy on May 24th The plan was to also start radiation therapy a couple of weeks later over the area  of the surgery to prevent any metastasis. A week after radiation therapy started my father started complaining about lower back pain. A few days later it was almost impossible to get him on the radiation table even though he was on oxycontin.
 

By late June and after an MRI that showed metastasis to his spine. His higher dose of oxycontin (12h) and oxycodone (4h) had caused changes in his persona. For example, lethargic and sleepy and even going to the rest room was a huge task (severe constipation) and frequency in urination. We decided to go for a second opinion/consult with Dr. Francis Arena in Long Island. Dr. Arena wasted no time to communicate with Dr. Ott at NYU and both agreed it was necessary to start radiation therapy on his back to relieve the pain. After ten sessions and because of time constraints with the start of the clinical trial of Zelboraf that we had matched we had great success with in controlling his pain and getting completely off oxycontin by the time we started Zelboraf.
 

Two and a half cycles of Zelboraf nd with minor adverse reactions we were scheduled for PET/CT and MRI of the spine. The results? Devastating. new mets and old mets had grown. We were told that Zelboraf had stopped working. I don't know if he had ever reacted to it. We stopped Zelboraf two weeks ago and were told by NYU to start on temodar. I again called Dr Arena and requested another consult because my father by now was ready to throw in the towel and requesting to bring him back to Greece for his last days. I know it’s his wish but I can not give up hope yet. Dr. Arena also build on our hopes and my father is ready to start on his first infusion of Yervoy Wednesday Nov. 2nd. We are looking and praying for some positive developments because we are back on oxycontin and the pain under his right arm is excruciating. I hate seeing anybody in pain but I can't express my pain seeing my DAD in this condition.

 

Love and Hope to all of you and yours...Kosta

 

 

 

 

 

 

 

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AlisonC's picture
Replies 10
Last reply 10/31/2011 - 7:07pm
Replies by: mombase, azurliene, jag, lhaley, Anonymous, shellebrownies

Hi MPIP people,

I used to spend a lot of time here ( started trying to have a baby and it was easier to get some mel distance) but had hoped to return later this month to announce 10 years NED (which still might happen if my insurance company stops trying to dodge the scan fee and it goes ahead). Instead, I'm back looking for information on post-surgery options for a good friend and colleague who this week progressed to stage IV with 3 brain mets. He had a large primary (not sure of breslow) removed from his scalp and bilateral neck dissections for micro mets 2 years ago. GM-CSF since. Just this week, 3 small brain mets detected after sudden nausea and pain. No visceral mets according to the PET so they will resect 2 of the mets and do SRS (I believe) on the 3rd.

I'm so out of the loop on adjuvant treatments for stage IV Mel (which I promised myself I would never do....even after 10 years I am not complacent since my own stage III met came 9 years after my primary) so any advice you have on post-surgery options would be very welcome. Any positive outcome stories would also be very welcome I'm sure, to give him some all-important hope.....

Sorry to "take" when I haven't been "giving" on this board much of late.........

AlisonC
NED since 2001

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nickmac56's picture
Replies 7
Last reply 10/31/2011 - 4:10pm

My wife's hydrocephalus is caused by melanoma cells in the spinal fluid accumulating at the base of the brain, and clogging up the pathways the spinal fluid travels. The radiation oncologist described it as snow - a light dusting - but enough to prevent the fluid from draining. Since it's produced in the brain, if you plug up the drain - it's going to expand and press the brain - causing her headaches, nausea and instability. So they want to use whole brain radiation to try to melt that snow away. The radiation onc isn't concerned about the two solid mass tumors right now - they might get handled by the whole brain or she will spot treat them later. She is thinking twenty treatments, daily. Low and slow. In the interim, she is going to talk with the neurosurgeon tomorrow, and discuss a shunt to drain away the excess spinal fluid, thus relieving my wife of the headaches. But where to put that fluid is the question. If it's filled with melanoma cells, probably don't want to dump it in the liver or other part of the body. If it is expelled outside the body there is a risk of infection. So that is a big discussion tomorrow. 

They don't think a lumbar tap is in order as a relief valve because of the chance of a pressure differential and if the brain "drops" as a result that would not be a good thing. 

What is still unknown is how to address spinal fluid cancer. The whole brain radiation will melt away the cancer sitting in the pathways clogging things up. But the free floating cells are an issue. If it can't be handled the same thing will happen again soon - and we only get one shot at whole brain radiation. So what chemo to do and how - continue the intravenous Abraxane or switch chemo and pump it direct into spinal fluid through the shunt or Ommaya reservoir to the ventricles? The evidence is not clear on what choice should be made.

We have a great medical team. The radiation oncologist  - our regular one who we just saw Friday for the brain MRI - came into the office to look at the CT scans and review the Friday MRI in depth with the radiologist  - and called me Sunday afternoon. She's a rock star. Apparently we are getting one of the top neurosurgeons in the Northwest. We already love our oncology team (we had the on call doc this weekend and he was terrific). Unfortunately my wife is in no position to understand or participate in discussions about treatment. So I have to use my best judgment, based on our prior discussions.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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AlanM's picture
Replies 1
Last reply 10/31/2011 - 3:08pm
Replies by: Anonymous

I was on Prednisone for over a month to control Colitis related to my second infusion of Yervoy. After a hospital stay for intervention to finally put a stop to it, I was slowly tapered off. Then, a little over a week after my final dose the symptoms returned. I was put on medra-pack but as that tapered off , again the symptoms returned and was told on Saturday to use 40mg of prednisone a day. This amount appears to be holding things stable (during my last episode I was up to 100mg before being brought into the hospital!) My question is....has anyone else experienced these sequential bouts with Colitis as are result of ipi? And if so, how long can I expect this to last? I am already about 2 months out from my last infusion......at what point do the side effects wear off?  

Alan

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jax2007gxp's picture
Replies 3
Last reply 10/31/2011 - 1:11pm
Replies by: lhaley, jax2007gxp, Anonymous

It's still a bit too early to call the doc's, so I thought I'd check with anyone out here...the last couple of days I've had what I would consider regular aches and pains associated with "taking it easy" and "lettting the radiation kick mel's butt".  Basically, just the occassional discomfort from moving and such.  Well, overnight I feel like both of my knees have been attacked by arthritis!  I can barely stand up and I am hurting just lying on the couch with my feet elevated.  This is new to me so I don't know if I should try heat or ice....take an OTC (nothing has been prescribed for pain or taken off limits).  Any ideas for relief until I can talk to the doc's office is appreciated!!!

Jacki

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ValinMtl's picture
Replies 4
Last reply 10/31/2011 - 6:26am
Replies by: MariaH, momof2kids, NYKaren, King

I go back to NIH next Tuesday for another visit after the TIL treatment with TBI which was done in mid-August.  My first visit held wonderful results for me at the end of September but I am dreading this one.  The first time around I had a tremendous amount of improvement...total volume (length x wides for each lesion tallied together = 62% .

I still have the weight loss from TBI which is not surprising...currrently lost 30% and still not able to hold much down but that is not the worry.  I see an significant increase in visual growth...many many under the skin and grey plus several 'black' spots.  I'm very very worried.  Has anybody heard of increase like this ...if anybody has thoughts on this I would be gratefully appreciative.  I have tried ipi (partial) now TIL...doesn't look like there is too much else out there.  Val

Live Laugh Love Nothing is worth more than this day!

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lizzykittycat's picture
Replies 5
Last reply 10/31/2011 - 4:28am
Replies by: JerryfromFauq, Jim M., Gene_S, Anonymous

hello,

i was wondering if anyone has paired any homeopathy with their conventional melanoma treatment?  i am currently seeing a homeopath and taking about 14 remedies daily.  with my 3a diagnosis, i decided to try and arm myself in ANY way possible.

also... does anyone have any suggestions for good books that i could consult as far as dealing with a melanoma diagnosis?

thanks in advance.

~liz~

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