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 15
Last reply 12/17/2010 - 11:51pm

Hi all,

 

I do not want to put negative thoughts about IPI but I have been reading posts daily. Many people taking IPI seems to have new lesions after taking IPI. Yes maybe these lesions would have shown up anyways with IPI.And yes may these are being caused by "reactions/inflammation" to IPI. I know that this can not be proven "scientifically" but I anyone have any thoughts about IPI and "cause & effect"ofmgetting new lesions after taking IPI. 

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dian in spokane's picture
Replies 12
Last reply 12/19/2010 - 10:56pm

hey.. I would normally think of this as an OFF TOPIC topic, but..the chat room is on topic for some and off for others.

It doesn't get much use anymore, but that's just because of the changes that have gone on with the boards.

But, I see there are hundreds of visitors right now and '10 members' . If I am right, only members can log into the chat room these days, but still, those who are logged in as members can pop in at any time.

Usually, people don't use the chat room here because the see no one listed. There's a spot on the left side of the board that says something like "who's chatting?" that shows a list of people in the chat room, and if no one is in there, then no one comes in. why bother? BUT.. after many years here (I've been coming since 2003) I know that if one goes into the chat room and hangs out there, then new people see your name and come on in (well.. if they are LOGGED IN!)

It is a little used resource with the new boards. But that's a shame, because over the years, the chat room has been a WONDERFUL resource for many people. I've spent many hours there, hours when I was stressed out worrying about scan results, or during treatment. I've chatted with people who were on their computers in their hospital rooms! And I have talked to others from my hospital bed.

It can be very rewarding, being there to talk to someone who is new and scared, and it can be very comforting to chat with others who know how you feel on those nights when you are just ...obsessing and worrying.

I'd like to see people using it more, so that's why I am bringing it up on the main board.

Over the years, there have been different people who just..stuck with it, and hung out in that room, even if they were all alone, for hours at a time. When I first came it was Lynn from Oz..and Charlie and Barth. But many people have done it over the years. Sometimes, there are many of us in there horsing around, and sometimes it's just jokes and celebrity gossip, and sometimes it's someone who is having to figure out how to say goodbye to their kids. But..there's always been someone who did it for weeks at a time. JerryFromFauq was our last guy to hang out there for hours at a time, before his horrible horse accident. And a year, it was Mykka, and before that Barth. Lots of times, these guys just forgot to log off! and you'd go in to talk and they wouldn't even be 'present', but their ghosts would bring people in, and others would come.

I used to do it. Just hang out there for hours while I watched tv or did other things in the evening, but now I travel too much. So hey..you regulars..come chat. Just, log in, go to the chat room, then, if you are alone, minimize that window and open another to read the board. Stay logged on while you read the boards. If no one comes in by the time you finish, then just..check on out. It helps for newcomers to see someone's name in that chat window.

My public service topic of the day.

 

dian

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ValinMtl's picture
Replies 21
Last reply 3/19/2011 - 1:16pm

I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.

RESULT

Abdomen:

Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.

Impression:

Follow-up patient with metastic melanoma showing disease progression according to recist criteria with more than 20% increase in size of a left inguinal region lymph node.

Decrease in size of more than 30% of a right external ilac lymph node. Two other non-measurable lymph nodes show also decrease in size.

No newly developed lesions.

I'm was very happy about the 30% decrease on my problem leg but extremely concerned and surprised about the 20% increase on left.  I can actually feel the swelling. I have heard (and praying this is so) that sometimes lymph nodes react to ipi and was wondering if anybody else has had such a reaction.  Would appreciate any comments or thoughts on this.  I'm hoping they don't take me off the treatment since I have had this increase (unless, of course, it is absolutely necessary).  I'll be due for another scan in 12 weeks.

Stressed and worried in Montreal,

Val

Live Laugh Love Nothing is worth more than this day!

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Linda J's picture
Replies 6
Last reply 7/19/2011 - 2:45pm

Currently I am recovering from a ingronial LND and the removal of a large tumor on my hip/buttock. When I had my drains and my staples removed the surgeon took out another small lump in my pubic area. Since the i have had six "pimples" come up near my drain wounds. The surgeon called today to say that the other little lump was MM and she is worried that these other pimples are local reoccurances. I see her and a medical oncologist on Friday.

I need help.
Are there people out there who have survived multiple reoccurances that pop up after surgery? They are all just surface ones - like right at or just under the skin.
What are my options for treatment???
I'm in Canada with princess margaret cancer hospital but should I look for treatment in the states?

Can I make it through this again?

Please please help!

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LynnLuc's picture
Replies 7
Last reply 12/16/2010 - 10:26am

my scans are clear and I am still NED...my thyroid is still reacting and now it is no longer “not functioning” but has bounced up to the high side LOL...also seen as good! They took pics of my thighs today and Doc laughed and said I would be famous lol...I said I am blessed...I begin the 2nd Twelve week cycle on Dec 22.

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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Tracy Chicago's picture
Replies 4
Last reply 12/15/2010 - 7:38pm
Replies by: Anonymous, Jim in Denver

I have taken a break from visting the board for a while and just wondering what the latest is on BRAF and Ipi? I remember BRAF was showing measurable tumor shrinkage but it only lasts for about 6-9 months and then there is agressive tumor regrowth. Has anyone had a durable response?

 

And I heard Ipi might get FDA approval but only for stage 4 patients. Is that still true? Has anyone had a durable response from Ipi?

 

Thanks and best wishes to everyone!

Tracy, 3B, NED

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molly's picture
Replies 9
Last reply 12/21/2010 - 1:54pm

Thinking of both of you and hoping Eric is comfortable and you have been able to work through  some of the challenges you have been facing.

molly

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davekarrie's picture
Replies 9
Last reply 12/15/2010 - 10:12pm

Good morning all,

Just a quick update on myself.  Initial tumor 1.5mm, mitotic rate 4, non brisk TIL on center of sternum/chest.  Had the WLE, about a 7 inch scar, and SLNB under both armpits.  1 was positive under left arm, then complete Lymph node disection of 41 nodes.  The drain comes out tomorrow and had stitches out of WLE 2 days ago and healing very well.  PET scans negative so for now NED. Met with oncologist at Mayo clinic and she said there is really no approved treatments for IIIa, but she did recomend Leukine if my insurance would cover it.  I have blue cross/shield.  I will be calling them today, but my question is for all out there who have tried Leukine.  What are side effects, how long is treatment, can it be done from home and any other things that you can tell me.

Thank you so much for any info and god bless and happy holidays.

Dave

Live life to the fullest and enjoy each day!

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mifis's picture
Replies 4
Last reply 12/15/2010 - 7:36pm

Hi there,

Some of you may remember me. I was diagnsoed with a melanoma in situon my upper arm in May, had a further excision in June and it came back with atypia at the edges, went for another excision in July which came back still atypical at the edges and was told to "stop worrying about it and get on with my life". Yes, that's a direct quote from the dermatologist! I had a gut feeling not to trust that advice, so went for a 2nd opinion at MSKCC in NYC and had the slides re-read,.Their opinion was that there was still melanoma in situ present so I had a further excision on October 20, much wider, by a different surgeon, and had the slides read twice, inlcuding by the same pathologist at MSKCC. This time it came back with CLEAR MARGINS. Hip hip hooray!

The scar is healing well, about 3" long and quite indented because of the size of the piece of skin that was removed. I went to see the surgeon last Friday for a check-up and he had a quick look at it and we had another long discussion about sunscreen etc. Today, I was checking it out in a mirror (it's hard for me to see because of where it is) and it looks like there's a couple of little dark spots in it. I had my husbnad check it out and he said it looks like  little dark pores, like blackheads, or  little scabs (but there's no roughness), so of course, I am freaking out thinking that the evil thing has come back.

What should I do? Is it possible for it to come back SO soon and would a re-appearnace manifest this way?

Thanks, Jennifer

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Kim K's picture
Replies 10
Last reply 1/1/2011 - 3:23pm

Hi all,

As seems to be a problem in the field of oncology, what do do with your patient after they are no longer receiving treatment.  It has been 5 months since my last scans showed I am NED (hooray!) yet my oncology team still hadn't come up with any kind of follow up schedule for me.  Only after I flew to Honolulu for some face time (my primary onc. had a sudden emergency so I saw his associate) did I get any feedback.  My oncs. almost want to have my primary doc who knows nothing of melanoma to follow me, since I am no longer in active treatment and NED.  I told them NO because my follow up should include PET.  Queen's Hospital in Honolulu has the only PET/CT machine in the entire state.  Why would I want anyone here in Hilo to follow me when they don't have the equipment (or expertise) to do so?

Question - for those of you NED and not in a clinical trial, what are your follow-up scans and when.

I know there is no consensus on the issue, but for me, I do not buy into lets wait until you have symptoms.  By then you tend to be toast.  I have creepy crawly smoldering disease that showed up in only 2 spots after 7 years at stage IIA.  IL-2 cleared my final lesion this summer.  I DID get the associate (who saw me while in the ICU for IL-2) to agree that there needed to be some sort of scanning follow-up since I have no symptoms or abnormalities that can be detected with blood work or on a physical.

The doctor ordered a chest CT and brain MRI with a PET.  My concern with that plan was detecting any abdominal disease seeing as mel also likes the liver and small intestine.  He said he didn't think it was necessary since my mel came back to my lung and chest wall.  I disagree and want to make sure it doesn't pop back up elsewhere and we miss it.  I am sure the PET will catch it but there are also false negatives with PET that CT can detect.  Still no word as to a routine scanning schedule, let alone the kind of scans and locations to be scanned.

My gut tells me to do scans every 6 months for 2 years, and then if nothing, annually.  They should include brain MRI, PET / CT & chest / abdomen / pelvis CT.  I know if mel is planning on returning it will most likely do so within the next 2 years.  That being said, since I seem to have the slow moving mellower form of mel, I think it is OK to do scans every 6-12 months unless symptoms arise.  I just can't get anyone to commit to a game plan and I am the one pushing everything.

My goal is to catch any recurrence early so I can buy as much time for treatment or a trial when it may still actually make a difference.  I don't want to wait until my tumor burden makes itself painfully clear.  In the meantime, I deeply feel I will be one of the few that will never hear from mel again.  I hope I am right on that.  If not, I want to be as proactive as possible yet avoid necessary and costly scans.

Thoughts anyone?

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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Terra's picture
Replies 6
Last reply 12/15/2010 - 11:55am

Hi,

My husband is stage IV, we are off his 1st trial because it was not working (randomized to DTIC), but are having surgery in January to remove the spot after having received a third opinion.  I am having difficulty as he is sure he is dying and we are not on very good terms right now.  He has told me that he is extremely worried and scared for his children's future without him and that I am not going to be able to provide for them in the same way.  He is scared they won't travel, play sports, learn about the world.  I know this is normal, scary, heartwrenching that he may not see them grow up, but how much do I listen to.  It is not nice and not making a nice atmosphere for our children who are 3.5 and 1.5 and whose whole lives have been cancer.  What will they think of their mother when he continues to berate my shortcomings whenever he has a chance, even through his body language, when I make amistake or don't finish something like he would want it done, he raises his eyebrows, shakes his head.  He has gone so far as to speak about giving his mother visitation rights in his will because he thinks I won't let them see her (she is not my favourite person, but even if I hated her, which I don't, I would never do that to my kids, that will be one of their most important connections to him if he should pass), and he has also discussed putting some of our assets in her name because she has business experience and he doesn't want me to run the apartments that we own into the ground.  I am not perfect, but neither is he, we both love our children and want what is best for them but I am tired of trying to "prove" to him who I am, I know this is some of the cancer talking but he has always been pretty sure of himself and tries to in his own way to "provide constructive critism" but now with facing death it is constant as he tries to get me "into shape."  He is very close with his mother (not speaking with his sister right now and on and off with his dad) and he is really turning away from me and towards her.  I have asked him to speak with someone with me or by himself, he tried with me once, but didn't like what she said, tried once alone, but didn't like the therapist (I didn't really either) and his mom has said to him that speaking with someone isn't worth it.  Worst of all, I am pregnant, I was on the pill, but now I am pregnant and they have both said I did it on purpose - he wants me to have an abortion and I didn't want to have a third child but have difficulty terminating the pregnancy and worrying how I will emotionally deal with that one day when things (hopefully) settle down.  Really, either decision will give me guilt, feeling as though the stress of another baby on him will kill him, I know it will kill whatever is left of our relationship, and terminating it will be less stressful short term but absolutely awful long-term. This can be embaressing, how can we be going through this and when will it end, I am losing my motivation.  The only thing he appreciates in me is coming to his appointments with him - that is all.  He has mentioned that he was looking forward to our kids getting a little older and us having some time to work on our relationship and try to mend fences, but soemtimes I wonder if I want to mend fences at all.  I  have maintained composure through most of this ordeal and been by his side, and I still will be, but I am less concerned with our relationship and the future of it.  Speaking to others is horrible because I don't think they understand what the cancer may have to do with it and I am having trouble separating it as well.

Sorry this has turned into a novel - not even sure it makes sense.    

 

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JakeinNY's picture
Replies 14
Last reply 12/18/2010 - 9:25pm

If modifying our lifestyle can lead to A Lifestyle, then why not do it?

Pray to your god, feed your body and mind properly, make smart decisions on doctors, and make smart decisions on drugs, if they are necessary.

We all have to do what we can.

Do the best you can.

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JakeinNY's picture
Replies 13
Last reply 12/24/2010 - 4:22pm

3 years NED. Thank God again.

Do the best you can.

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MaryMary73's picture
Replies 3
Last reply 8/6/2013 - 9:45am
Replies by: JerryfromFauq, khen, KatyWI

I began fertility treatments in January 2010. The procedure is invitro fertilization. So after undergoing the standard hormone treatments, 22 eggs matured. Almost unheard of and so much so that I had ovarian hyperstimulation. Very painful. Out of the 22 eggs, 13 were successfully fertilized and became embryos. I had my first 3 embryos transferred in May 2010 but none took. I had the next 3 transferred in August 2010 which resulted in an heterotopic pregnancy of 1 embryo (emergency surgery to remove burst fallopian tube) and a miscarriage of the other 2. My husband and I decided to wait a bit...emotionally, I was a wreck and I was physically tired.

Melanoma rears its ugly head in November 2010. While sitting at home depressed about my crappy luck during the whole month of November, I happened to Google "fertility treatments and melanoma". It seems that research has been done that may link the two. I bring this up with my fertility doctor and he tells me that he has never heard of fertility treatments causing melanoma but he does confirm that the hormones given to stimulate the ovaries are extremely powerful. Hmmmmm.

I have 7 embryos left. I am 37 years old. Stuck between wanting a child but not wanting to risk a melanoma recurrence.

Can pregnancy raise the risk of a melanoma recurrence? Does anyone know?

The only real wisdom is knowing you know nothing -Socrates

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Scanphobia again...it sure doesn't get any easier...I want to believe I am still NED...I want to believe it will be a clear...YET...I worry they will find something...People tell me not to worry and think positive...If I think positive and it's not good...then I am totally destroyed...if I think the worse and it's a clean set of scans then I am relieved...this will probably never change!

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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