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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Terra's picture
Replies 7
Last reply 3/12/2011 - 3:04pm

we just received news that derek has mets in his liver, largest 1.3 cm, in his lung and one on his 6th rib that is 4.5 cm - we will discuss treatments in one week a Princess Margaret in TO - with this news and no trt or worse yet no trt that works how fast might this happen - please give me hard facts - he is trying to balance quality of life with treatment - I know he won't continue with trt after trt if 1 or 2 doesn't work and need to know e.g. for leave at work etc. - not making sense I know pls answer as you might be able to

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Newmom's picture
Replies 10
Last reply 3/12/2011 - 11:07am
Replies by: Newmom, alicia, lhaley, KellieSue, Anonymous

I had my 6-month ultrasound today - conclusions appear normal except the following: "Complex right ovarian follicle or cyst with an increased volume of free fluid in the pelvis.  The cyst may or may not be related to the cyst identified on prior study.  Advise a 2 month follow up examination for resolution".

Anyone know what the above means?  I am particular concerned on the "increased volume of free fluid in the pelvis" and the following for resoluation.  What do they mean?  Something bad was observed during the ultrasound?  I have made an appointment to speak with my doctor on this but just want to run this by everyone here first to get some sight.  Thanks.

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chrisS's picture
Replies 9
Last reply 3/14/2011 - 6:23am
Replies by: akls, Jan in OC, Anonymous, Carmon in NM, chrisS, Vermont_Donna

I wrote 2 weeks ago before our Maui vaca that my wife found out about brain mets. Was concerned about flying. The vacation was awesome! Came back and had her stereoscopic surgery on Wed. She was fine that night, and went to work the next day. Yesterday received a call from her work that she was having multiple seizures! She was taken to the ER and I'm in the ICU 15 hours later. There was no bleeding, thank GOD! She is under now and I'm waiting for neurology for the next step.
Has this happened to anyone else? I'm so mad at the stereoscopic surgery doctors made it seem so chill and never warned me that this was a possibility. Maybe I'm stupid for not thinking about it but I can't think of everything! What if she was home alone or driving??
I assume she will lose her license for safety. Anyone know of services in san Diego for this?

Concerned husband

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Jlynn2303's picture
Replies 6
Last reply 3/21/2011 - 11:04pm

Hi,
I wrote in an earlier post about my 63-yo step mother who was dx with melanoma in the lung last October. It had been found three years previously, but untreated. I've been able to find that if it has metastasized to other organs it is stage 4, general prognosis (5 years, difficult to treat) and various other info on typical sites for mets, etc. What I can't find is what actually might happen to her life.

She's never been the healthiest, was/is overweight, doesn't exercise or do much, etc. Pretty much a couch potato with no desire to do anything different now that she has cancer, so nothing has changed (she had a lung lobe removed last fall and they found no other signs). And even with all this talk of stage 4, etc she just doesn't seem any different now than she did 3 years ago when it was first discovered (though they didn't tell her until last October so it was undiscovered, untreated and allowed to grow for 3 years) or even three years before that. We are doing the watch and wait thing - but no one seems to know what we are waiting FOR. For it to recur, but what does that look like, what does it mean?

I just don't understand how, if it is stage 4, how she could not seem sick? Or feel worse? I hate to be morbid, but I'd like to know what to look for, how to be prepared. If the prognosis is typically 5 years, what does that mean? At this point, there is no treatment happening. Every couple of months they go see a doc. She will go to have ovarian cysts removed on March 21st, but they say they are benign, the PET scan showed nothing although the CA125 was over 1000. And life has just sort of settled back to the way it was before. Everything I've read says this is serious, but only talks in very general terms about prognosis and treatment.

Not that it is certain that this will kill her but statistically, the probability seems high(she seems rather resigned, as her gma, father and brother all died from cancer), but I don't even know what to watch or plan for.

What actually causes death? No one wants to talk about this, and I know, because of history and family dynamics that dealing with this will fall largely to me, so I'd like to have some idea of what actually, day to day, happens. I don't have any say in the treatment itself, don't go to doctor visits, etc. but can pass along useful questions to ask to my dad.

Thanks,
Jennifer

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alicia's picture
Replies 16
Last reply 3/29/2011 - 9:57am

Hello Friends,

I just had surgery jan 7, 2011 for wide excision of 2.3mm or greater amelanotic melanoma and SNB both groins.  The scar has been healing nicely until just a couple weeks ago (I am 9 wks post op btw) It started itching really bad and has a raised scaley pinkish area over the scar.  I'm really hoping this isn't a reoccurence in the scar but it feels exactly like the primary amelanotic melanoma that was there previously. This recent melanoma was also my third primary melanoma btw the onco says I have to think of myself as a stage 3 melanoma patient with 3 primary tumors 2 of which were intermediate thickness.  In my mind I keep trying to tell myself its probably nothing but a skin irritation but I'm really scared it could possibly melanoma since I've seen this beast come up three times now (twice in the past year). Plus the other 2 wide excision scars I've had have never had this kind of "irritation".  My question is has anyone else out there had an amelanotic melanoma reoccur in your wide excision scar and what did it look like/feel like???  or has anyone else experienced an irritation like this over your wide excision scar??? I also just had CT and PET scans yesterday for restaging and will be following up with my oncologist monday for results.  I plan on showing her this area on my wide excision scar at that time.  Thank you all for your help as I don't know what I would do without you:)

 

Thanks so much:)

Alicia Stage 3a w/ 3 primaries

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Jlynn2303's picture
Replies 1
Last reply 3/11/2011 - 8:05am
Replies by: lhaley

Hi,
Last October, my 63-year-old step-mother was taken to the ER for a GI problem resulting from old bariatric surgery. They did a CT scan of her abdomen and picked up spots on her lower lungs. The radiologist compared the CT scan to one taken three years previously when she had gone to the same ER for the same GI stuff and found that the masses had grown. It turned out that her doctor had forgotten to inform her. She had surgery to biopsy and remove the larger lump, (they removed a lung lobe) last November ('10) and it came back as melanoma, stage IV. A Pet scan in December came back clear. Apparently, she also has cysts on her ovaries and her CA-125 came back extremely high (over 1000). She is scheduled to have another PET in April, although the insurance company still is not certain it wants to pay for the first one. They have denied Interleukin treatment. Her father, brother and grandmother all died of various cancers. They did a skin inspection and found nothing. She seems to be feeling the same as always, no worse, no healthier.

I am having trouble getting a straight answer out of people and have some questions.

1. They actually discovered stage IV melanoma in her lungs over three years ago. When they talk about prognosis, how do they figure the time?
2. How accurate are PET scans? Everyone seems to think they are infallible, but I've seen stats of 81% accuracy. What does a clear pet scan + a positive CA-125 mean?
3. How does having had melanoma impact all of the other, unrelated surgeries and stuff that she will have to have to tx her many other ailments?

Thanks,
Jennifer

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The results of a new phase I study of E7080 suggest anti-angiogenic activity
that is "... correlated with anti-tumor activity in patients with a wide
range of solid tumors".

The abstract can be found at:
http://clincancerres.aacrjournals.org/content/early/2011/03/03/1078-0432...

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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JenC's picture
Replies 3
Last reply 3/11/2011 - 9:49am

My husband is finally getting BRAF. We were trying ipi but his body is shutting down so fast. New tumors show up daily and he is wasting away. He participated on the phase 3 trial but got dacarbazine. Since then he has done one cycle of IL2 and 3 doses of ipi. I hope he gets the drug asap and it works fast.
JenC

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akls's picture
Replies 3
Last reply 3/11/2011 - 7:46am
Replies by: lhaley, akls

I posted earlier in the week about my thyroid being enlarged.  They found at least two nodules on my scan one of which was "cold".  They sent me right over to ultrasound which dectected the nodules also.  Needless to say off to a biopsy at U of M for me within the next couple weeks.  Did anyone have actual nodules that turned out to be nothing?  I know the stats are in my favor, but can't help but being freaked out right now. 

 

Amy S. in Michigan

Stage IIIA 5 1/2  years NED Completed 1 year interferon 2009.  God is Good.

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Terra's picture
Replies 11
Last reply 3/14/2011 - 11:53pm

Hi, my husband would like to create something for our kids, we are not sure how much time he has left and we have two daughters, a 4 year old and a 2 year and another daughter on the way in June - he mentioned something like a timecapsule, but right now our heads our spinning and I am hoping someone here could suggest something they did or a loved one did for young kids to always have - thank so much

 

Terra  

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Reservoir Dog's picture
Replies 4
Last reply 3/18/2011 - 6:54pm

Hello all!

Patrick here in Dallas making my first post.  I'd like to thank you all for your up-lifting stories of courage and determination.  When I read about what others have gone through & are going through, I came to realize that I am a flipping weenie!!! 

I returned home from the doctor in tears because it appears another Melanoma spot has resurfaced on my face... for the 4th time.  After 3 excessions (maybe a 4th), 10 months of Interferon, coupled w/ radiation on the effected area, my doctor is concerned that it continues to return.   I guess the stories of Blue Nevus melanoma being very agressive... are true! 

My Oncologist said she'd like to put me on Leukine (Sargramostim) in an effort to extend my life.  I'm curious to see if anyone has used Leukine and what the results were???

Thanks in advance and God Bless!

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Wendi Lynn's picture
Replies 11
Last reply 3/17/2011 - 3:51pm

Hi All!

Anyone else out there sick of answering the question "how do you feel" or some version of that??  I love that these people care enough to ask, but I'm tired of answering.  On top of which, when I tell someone how I really feel they have nothing to say or couldn't even begin to know what hell this is.  Even with my husband....he will ask me throughout the day how I'm feeling and I just say fine, because I don't want to sound like a complainer. 

My other gripe is I have done everything I can to pretend that I'm fine around my family when I'd really rather stay in bed and sleep all day or even take a leave of absence from work just to not have to do anything for awhile.  (I'm on month 3 of LD Interferon).  But I fear that my husband, who is so accustomed to us being on the go all the time, would think that I'm giving up - which I would never do.  This, of course, is my fault because I have been holding up the last 4 months just "fine". 

I think that's why I love this place so much.  I can read about how others are feeling, what they are experiencing and learn about what I'm feeling or experiencing.  So, for that, thank you!  Although I may not post often, I check the board daily and feel as though I know some of you.  I cry with you and happy dance with you and bite my nails during anxious moments with you.  And I know that you can relate to what I'm saying, sadly enough, but thats why I consider this place so special. 

Thanks for listening!  Keep on fighting!

Wendi

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Shelby - MRF's picture
Replies 5
Last reply 3/14/2011 - 10:50pm

The Melanoma Research Foundation has partnered with EmergingMed to offer a free, confidential, personalized service that helps melanoma patients navigate clinical trials.  Online or by phone, customer service representatives will help you quickly search for clinical trials that match your specific diagnosis and treatment history.  Learn more about this new service by following this link: http://www.emergingmed.com/networks/MRF/  ..  

It is our hope that this partnership will result in melanoma patients learning more about every possible treatment option available to them.

Shelby Moneer, MRF

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carol b's picture
Replies 5
Last reply 3/11/2011 - 12:03pm

OK. ive been home for 5 days. I am still miserable. I am having so much swelling. Itching is driving me insane. My eyelids are gonna peel off. I have huge whelps all over my back. I am using the Derma Sarra lotion from the hospital. petro jelly for my eyelids. Benadryl for the itching. I have no clue what to do about the swelling. I take Aveeno baths daily. No one from the hospital warned me about the symptoms lasting so long. Im not even got enough time to heal before i hit round 3. My eyeballs feel like they are on fire and r gonna fall out of their sockets. My ankles have turned to cankles.. When will it  stop? Does anyone have any advice for me? It has to end soon. I need to hear it will end soon. Yes i am whinning. Yes its a pity party. I know there are more people on here far worse than me and i bow to you. You are so much braver than i am. I cant imagine going thru this for years like alot of you have. My heart goes out to you all. Im just not feeling like its worth the fight, or maybe it is, i dunno. 

 

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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Vermont_Donna's picture
Replies 21
Last reply 3/11/2011 - 4:28pm

Hi,

I hadnt posted my good news but someone asked me to....I had 50 to 60 cutaneous and sub q mets scattered over my right leg, concentrated around my knee and a few close to my groin before I started Ipi on December 1st. My melanoma was grwoing daily, I could count new lesions, the size of a pencil eraser or a tad smaller every day and the sub q lums were purplish on the skin and underneath were painful lumpy areas the size of a quarter or bigger. I started IPI December 1st and for the next three weeks tumors were still appearing. After the second infusion, while I had some new tumors that appearing still, I noticed one of my smallest mets developed a "crust" and then within a week ir flaked off and underneath the met was almost gone. The news was too good to be true...I waited til my next infusion to show my oncologist. He was pleased but also noted the new melanomas but comforted my by saying that new lesions appearing int he first 12 weeks was "acceptable" per the protocol, meaning it didnt mean that Ipi wasnt working yet, and that the sponser Bristol Myers Squibb wasnt going to toss me out of the trial. 

After infusion three major changes to my melanoma lesions started happening. First of all, NO NEW ONES popped up and second, my present melanomas started "reabsorbing". No other ones crusted over and flaked off like the first one. More were reabsorbing by infusion #4 and by the time I went for my PET/CT scan two weeks after my 4th infusion, ALL the melanoma tumors were ALL GONE. I showed the oncologist my leg and he was very impressed. The sub q's were still palpable but smaller and they didnt hurt. My PET/CT showed no new melanoma anywhere, it did show some moderately hypermetabolic activity in my external iliac lymph nodes (in the right nodal basin where my groin lymph dissection was done)......my doctor thought that this reflected inflammation reaction to the Ipi charging up my immune system.

I am currently in the 12 weeks "watch and wait" part of the clinical trial. My symptoms have been increased fatigue, so I rest/sleep more, ie a daily nap when I can manage, some nausea (not daily but when it hits me it really hits me, maybe once a week), some whitening on my skin (noticeable to my doctor and under a blacklight), a rash all over my body after the 14th week, not itchy, and not that noticeable to anyone but me. I think that is about it for side effects. I am very pleased needless to say!!! I asked what the "durable response" is and my oncologist said he could predict that, but he is hoping "forever"!!!!

 

I am B-Raf negative by the way, and have had melanoma since March 2006. Read my profile if interested for an accounting of all the treatments I have done. Many treatments perhaps delayed re-occurence but Ipi (besides resection where possible) is the only thing that has effectively "worked" to eradicate my melanomas. I hope this gives others HOPE for themselves!

Vermont_Donna, stage 3a

currently stable after 4 infusions of Ipi

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