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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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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ladyinnh's picture
Replies 13
Last reply 10/19/2012 - 11:11pm

Good afternoon all, I'm hoping I can get some advice from you.  I was diagnosed with Stage 3b melanoma in October 2009 and just completed a total of 10 months of Interferon.

My son is 17 months old now. Two separate oncologists have given me different advice regarding trying to get pregnant again. One said wait 3-5 years to try and one said 6 months to a year.  I'm 35 and my husband is 38.  I really want to try to have another child as soon as its safe but that beign said there is much talk that women can have reoccurences of melanoma when pregnant becuase your estrogen levels rise so much.

I've been told its a huge risk and I've been told it may never reoccur.  Even my oncologists dont' seem to have any clear information about how at risk I am of getting this again.

I could really use some advice, referrals to doctors I could call re: this and information.

Thanks all in advance!

One day at a time!

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sharmon's picture
Replies 11
Last reply 12/13/2010 - 4:44pm
Replies by: Jim in Denver, sharmon, Anonymous

Hi everyone,

Brents scans this past last week, after 9 months, where mixed.  Some measured a tiny bit larger than 2 months ago, but not as big as the baseline scan from February.  His doctor did not take him off the trial, for which he was grateful,  saying there is not significant growth.  Yesterday he is telling me he has some strange (discomfort in the lung area near where the growth was measured to be the most).  He will be scanned again in February. 

We are looking into the plan B for the next treatment.  He was retested for a whole list of mutations and is negative.  The NRAS and GNAQ results are still not available.  He was Braf negative when he went on the trial.  The arm  of that  trial he started in Feb. was for solid tumors and he did not have to be  Braf positive to begin treatment.

He feels fantastic,  great appetite, high energy, and no real pain to speak of.  His breathing is good also. 

We know that CT scans can show different things at different times and are not perfect.  This could account for the difference from this scan to last.

We also know that most trials require that you not have previous treatment with inhibiitors.  I am aware that it is not going to be easy to move onto the next treatment and want to have some options in mind aheard of the game.

Anyone out there who has failed  a MEK inhibitor and has moved on to another trial?  Your input and feedback would be greatly appreciated.

God Bless you all.

Sharon and Brent

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Carmon in NM's picture
Replies 3
Last reply 12/13/2010 - 8:09pm
Replies by: Lori C, lhaley, King

On Wednesday I'm scheduled for a full body CT and brain MRI to see if I am responding to the carboplatin/taxol/temodar Phase II trial I'm on. For such a long time (nearly two years) I didn't even think about scans but after brain mets in June followed by an adrenal tumor found in September, I find I am definitely thinking about this one. It isn't with the terror I had during that first year but flashes of anxiety are definitely popping up.

Plus, my oncologist, who I absolutely have loved and had total faith in, announced she is leaving UNM to take a wonderful position in the northeast in February.. She has assured me that all of her patients will be assigned to top oncologists and that she will leave them with a complete treatment plan. I trust her in this too and she has been such a caring doctor that I can only wish her the best - she deserves a life too!

The second infusion was much harder than the first one. I was hit really hard on the third day, no serious nausea, just extreme body and nerve pain. Also, the oral temodar caused me to faint one night resulting in a dislocated rib. I was so mad! It wasn't bad enough that I felt so horrible, then I couldn't breathe either! I actualy questioned my resolve to get through six cycles but just like the first time, on day eight it all passed and my usual optimism set in and I knew I can get through seven really hard days if it means defeating this beastie.

I find that about all I can manage to eat on days three through seven is broth and soft foods. It isn't that it makes me sick but that I have no appetite at all so I stick to nourishing things that I can easily get down. But boy, when day eight gets here, my appetite comes back with a vengence and I eat everything I can for the next three weeks to try to maintain my weight. Guilt free eating!

So if the scans show no new tumors and stable or reduced disease, I'm on for four more rounds. The next one on Dec 20th which means just like Thanksgiving, I'll be feeling the worst right through the holidays. But hey...I feel that I'm not doing this just for myself, I'm doing it for my husband, my family and all of the friends who have been there for me every day while my husband works out of state. The friend who rushed me to the hospital and saved my life when an undiagnosed brain tumor began bleeding into my brain. And the ones who have showed up every day to feed our horses and take care of outside chores when I've been too sick to.

I know this will sound impossible to newly diagnosed people, or those still in the first years of fear, but in many ways this disease has been an incredible gift by bringing me closer to the people I love and of learning to live fully in each moment with humor and joy. For everone else out there waiting for results, struggling to get through treatments, or caring for loved ones who are facing those things, I wish you peace and joy through the holidays and beyond! Carmon

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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Melanoma Mom's picture
Replies 13
Last reply 12/14/2010 - 3:01pm

Today our 14 year old son starts Interferon. Please keep him in your thoughts and prayers! 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/12/2010 - 7:35pm
Replies by: Sharyn, Anonymous

It has been awhile since Sharyn has posted. I am worried. Anyone know how Sharyn is doing????

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mimi0201's picture
Replies 6
Last reply 12/21/2010 - 10:22am

My husband has returned home from 7 days in the hospital after receiving 8 bags of IL-2.  We could use some reassurance that the numerous side effects will ease.  He's experienced most of the anticipated effects, with some extras.     He's pretty unresponsive, so it's had to judge what might be his biggest complication.  Kidney function is impaired, but lasix is helping with that.  I'm feeling kind of cast adrift, and could use some encouragement from IL-2 veterans.  Thanks.

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/12/2010 - 4:02pm
Replies by: Anonymous, Janner

I had an odd mole on my finger in my teens.  It always caught my eye.  It eventually disappeared.  I've had early stage melanoma.  Should I worry that that mole, years ago, was a melanoma that regressed?  Or is it normal to have moles regress in teens/early twenties?

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claudia-uk's picture
Replies 4
Last reply 12/14/2010 - 9:07am

My husband has mucosal melnoma which has spread recently.

We received the CT scan results but don't quite understand them. We will have a hospital appointment in a week but it would be good to hear what other people are thinking:

Multiple sub-centimetre pulmonary nodules (left upper lobe 4mm, middle lobe 5mm.

No enlarged lymph nodes

Multiple hepatic lesions. Largest 5.7cm, this is heterogeneous and lies within segment 5/8.

A 1cm peritoneal nodule is present.

No focal bony involvement.

 

Does that all sound very bad? 5cm sounds already quite big.

Husband will start with chemotherapy in a week, but only 2 or 3 cycles and then he will go on to Ipilimumab compassionate trial.

We asked for PD-1 trials, but they are not available in the UK yet. As he has mucosal melanoma he is not eleigible formany trials and he was also tested negative for braf and c-kit, which seems that his only possibility at the moment is Ipi.

 

Thanks for your help!

Claudia

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