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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Rendergirl's picture
Replies 5
Last reply 5/28/2011 - 1:23am

When I did my PET/CT scan a few weeks ago before my lymph node surgery, they said there was a spot on my knee. At the time we were busy with other things and said we'd check on it later. Yesterday I had an MRI of said knee and my onc called today with the results. I have a "perforated synovium" which is a perforation of the lining around my knee. Apparently people who play sports tend to get this injury, and I'm SO not a sports person. I have no clue how my knee got like this, it doesn't even hurt. I haven't had any injury to it that I can remember. The onc said he was referring me to an ortho doc, who would probably want to do some kind of surgical procedure to make sure it's not Melanoma related. Sounds like a biopsy to me. Anyone ever heard of this??

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Terra's picture
Replies 3
Last reply 5/29/2011 - 5:03pm

We are trying to decide between TIL and IPI.

 

My question right now about IPI is about how long it takes to know it is definitely not working?  I know it takes sometime and time is of the essence - if you were not an ipi responder could you post how long it took to know that for sure?

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JuliaZ's picture
Replies 6
Last reply 5/26/2011 - 3:56pm

Need an advise. Are we being unreasonable in continuing out fight with melanoma?

Three weeks ago my relative was given two weeks to live. Were advised to transfer him to hospice. Actually they wanted him to be transferred there back in March. Today is May 26.

Rigth now he survives on blood infusions. It used to be once in two weeks, now it is two times a week. When he is not on pain killers, he is alert and has clear mind. Yesterday, his doctor dr.ibrahim at Dana Fraber in Boston, called to announce that she refuse to treat him. On question about blod infusions, reply was that he can come but right after that he will be transferred to hospice. He and family do not want to do anything with that organization. We can take care of him. Nurse that helps at the hospital when he comes there for blood, advised that once in the hospice any blood infusions will be stoped and there will be only pain killers. It is mean, that if we agree for hospice, he will actually bleed to death in a week. There is no problem to take him to the hospital for much needed blood, but doctor said that there will be no blood for him no more.

Are they allow to do that.???? If there is worry about money, then there is an insurance cover all they procedures.

We are at the point of no return. And do not know how to react and how to proceed.

Do we have right to refuse hospice?

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nickmac56's picture
Replies 1
Last reply 5/26/2011 - 11:23am
Replies by: Carmon in NM

My wife is scheduled to start her Cyberknife brain radiation treatments today - 5 total treatments over the next 8 days (due to Memorial Day weekend) each one only lasting for about 15 minutes. Hiw much fatigue should we expect - would love to hear from those who have done a similar regimen? 

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

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TracyLee's picture
Replies 10
Last reply 5/26/2011 - 10:01pm

Hi y'all,

I've never had any pain before. Now, my neck is very tight, the node right under my jaw is hard as a rock, and I'm just a mess today. It hurts to (gently/slowly) turn my neck now.

I'm starting Ipi/Yervoy tomorrow. I have a call into my onc, but I'm really down right this minute. From other Ipi posts, I'm expecting some swelling and pain AFTER Ipi begins, to show that it's working. But I wasn't expecting to hurt BEFORE Ipi.

Feeling weepy, scared and afraid. Hard to be positive about starting Ipi when I feel I've suddenly taken a turn for the worse!

Also, I've emailed Dr. Sharfman at Johns Hopkins. Since I'm the first in Delaware to receive Ipi, I will be co-managed by Dr. Peri here, in coordination with Dr. Sharfman at Hopkins. I don't have Dr. Sharfman's cell phone number. He had told me that I would call HIM with any post treatment issues, since he's familiar with the side effects. I have not heard back from Dr. Sharfman for his cell number. I tried the office yesterday and they totally stonewalled me. Does anyone have his cell number? I'm not one to call and bug a doctor unless I REALLY need them!

Now I'm worried that I'm starting Ipi in bad shape, and I'll have some reaction on a holiday weekend and won't be able to reach anyone!

I'm sure I sound whiny, because I know many on this board are always in pain.

Trusting in Gods healing, but feeling alone right now...

TracyLee

Stage IV as of May 16 - scalp/neck/lungs

 

 

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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gtown's picture
Replies 6
Last reply 5/26/2011 - 11:36am

Hey what's up? Just curious, has anyone undergone interferon treatment (high or low dose) if they weren't stage 3? I know the successs rate isn't great but wouldn't it be preventative medicine? I mean what could it hurt . I alluded to the fact that I took it at a a much lower dose for HEP C on another post. I know I'm probably missing some key points here, but from what I've heard it's usually not used unless you're stage 3. Am I wrong? Has anyone used it and not been stage 3? Is it insurance reasons? Are my incessant questions driving everyone to the brink? HaHa

                                                                                                          Gtown

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debandmike's picture
Replies 15
Last reply 5/28/2011 - 6:34am

I am the primary caregiver for my husband who has been dianosed with Stage 4 Melanoma Cancer with tumors in his lung and liver. That was Valentine's Day 2011 and he has completed his first series of IL-2. It actually went better than expected buy we have to now wait for results until June 21st. Since cancer has become part of our lives it has been so different and scarey. Looking for someone to relate to with this experience so that I can atleast survive whatever lies ahead.

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boot2aboot's picture
Replies 1
Last reply 5/25/2011 - 7:37pm
Replies by: ShariC
don't back up, don't back down

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Lauri England's picture
Replies 4
Last reply 5/26/2011 - 12:03pm

I saw a surgeon on Monday and he did not want to do a needle biopsy because the lump is to small.  I am now scheduled for Surgery this Friday for biopsy.  Hopefully they only have to remove the 1 Lymph Node but we all know how that goes.  Sometimes they get in there and need to remove more.  I am still optimistic that the beast has not returned and I am only being cautious.  Still on Interferon.  Almost 8 months completed.

Don't sweat the small stuff. There are bigger fish to fry!

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thebunches's picture
Replies 7
Last reply 5/25/2011 - 9:31pm

My husband had the WLE and SNB surgery 2 weeks ago; we rec'd the results report the other day. The surgeon was able to get clear margins in the WLE and removed two lymph nodes, both of which showed zero signs of cancer. (PRAISE GOD!!!!!) So we are now officially Stage IIB, and setting up regular 3-month appointments with the derm, one more appt with the surg onc, and then as-needed after that.

We are just so humbled and blessed that God, in all His might, would pour out a blessing of such magnitude on us... people so undeserving. It's just put us in awe of His mercy and grace. Thank You, God, for saving my husband!

I am almost feeling guilty to report the Stage IIB, (level T2a, N0, M0), and official "NED" status...but it does feel good! GLORY TO GOD!!!!!

Thank you to all who have answered our questions and reached out to us. This site is an amazing shoulder to lean on. Much love and hugs to ALL!!!

--thebunches

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Lisa13's picture
Replies 11
Last reply 5/28/2011 - 7:56pm

Since finding out 2 weeks ago they found a few small nodules on my lungs, I've been in fairly good spirits considering. I'm trying to remain hopeful that in another 2 weeks, they will find they havn't grown or not prove to be anything at all.  That being said, today I'm having a really weak day.  All I can think of  is this cancer spreading like wildfire throughout my body and that my next CT scan may reveal many spots that may not be controlled at all.  This is my biggest fear and I'm becoming increasingly more frightened.

We just sold our condo and bought a beautiful house that we move into in August and I can't seem to get excited about it because I fear I may not even begin to enjoy it. My husband talks about us growing old in this house and watching our daughter grow up and go to school and I don't even know if I'll be here next year.  Right now, they don't know what these spots are because they're so small (measuring a sonometer ??) so I have to be remain strong.  

I really hate that this is happening to me and I want so badly to be able to live much longer than these stupid statistics indicate. Most of the time I'm probably in denial about the whole seriousness of this situation, but deep down, I'm always hopeful and positive - except today.

Lisa 

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

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Gene_S's picture
Replies 11
Last reply 5/28/2011 - 11:42pm
mahdusia's picture
Replies 13
Last reply 6/1/2011 - 8:59am

Hi,

I have a problem with getting directly to main investigators/people responsible for running clinical trials. My father is stage IV, with mets in brain and critical condition of liver. Our doctor proposed the mixed chemotherapy, which I think is a last resort in this case, convincing us there is no possibility to get e.g. PLX4032. I was trying to find some information about PLX via Genentech, but the only answer I got was "please contact your physician or Roche", and for the application forms to Roche nobody has yet answered (sent 5 days ago)

Does anybody have any direct contact to hospitals/people and also requirements to be approved for PLX4032 clinical trials? I'd be absolutely grateful for information.

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Teodora's picture
Replies 14
Last reply 5/31/2011 - 7:04pm

Hello everyone,

I am new to this forum where no one wants to be, but we all found oureselves on .I hope to find some advice and support troughout what seems to be a very  lonely journey due to the rarity of this desease.

Here is a brief history of it:

In June during a family  trip/me and my husband/ to my native country of Bulgaria I  suddenly started bleeding:the bleeding was  spontaneous and intense with no previous pain or any other symptoms .On the second day they rushed me into the ER where where they immediately  performed emergency procedure to clean me up.The doctor said I seem to have a cyst on my uterus  that could be giving me problems further down the line and he  suggested hysterectomy at some point as a precaution measure.We barely made it back  home to the US, when the  next month I had another massive bleedig:a life saving hysterectomy was performed to removed my uterus with what showed via ultra sound to be a fibroid attached to my utterus and cervix.

I merely made it because my haemoglobin levels hit the critical 6 number  where I needed blood transfusion.One week after the surgery,still weak and exausted they called us in and gave us the devastating news: the tumour was malignant melanoma, which I never heard of/on the uterus/.They doc didn't sound  very hopeful, he said is a very rare and aggressive kind of cancer and he gave me no more than few months to live.No need to say we were shocked and devastated and tottaly blown away;I was preparing to go quetly.

Amazingly, the subsequent CAT scan didn't show anything.At this point I was referred to an ovarian cancer oncologist at the Maine Medical Center in Portland, Maine.The PET scan  they did  in August 2010  came back clean. Everybody was totally puzzled.I had a second surgery with my doctor to remove tissue and  lymph  nodes-the biopsy came back negative for cancer.My second PET scan 6 weeks ago  came back clean too.Anyway the pap smear my doctor  made on the same day we were discussing the pet results   showed  up some suspicious cells.I've  had a  biopsy 20 days ago and the result came back  positive for melanoma again.Luckily it was a very, very tiny spot on the top of my vagina near the surgery that was just taking a root, around 1 mm big.The oncologyst said she we were lucky to find it  at  all.They presume this were few cells from the original tumour that started  growing there .They didn't see anything else,she said my vagina looked pink and clear  except for that little spot with a ring of inflammation around  it.I am about to start 5 weeks of radiation to secure the area from any residual melanoma cells, also I have been referred to an oncologist  to discuss possible further  treatment.I did a lots of research on the Internet and I am dreading they will offer me Interferon/ or wait and watch/: I have a history of major depression on and off  and I have  asthma/breathing problems, sometimes experiencing  panic attacks, controlled by Xanax.I've heard this treatment is definately No No for people with history of  psychiatric  problems.Also I have almost zero tolerance to med's side effects with even simple over the counter meds making me sick with vomitting and nausea, like drammamine, allegra,doxycicline .Interferon  sounds like a very toxic treatment with minimum effectiveness so I already  pretty much  made my mind p that  I am going to opt out of it.Also I read radiation is not very effective on melanoma as they say melanoma is often deemed  radio resistant.

I  contacted Dana Faber Center in Boston and required  expert consultation on possible treatment options:they haven't come back to me yet.

Any advices/recommendations?I know it varies individually from person to person and  that is my main worry.Ho do we know what will work  best for us and what course of action to take? 

Thanks  to everyone that will come back to me with any advice,

God Bless,

Teodora

 

 

 

 

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mygirlmaddy's picture
Replies 11
Last reply 5/25/2011 - 9:43am

After a year and three months of nothing but bad news, and treatments that have caused worse side effects than anything the cancer has done with no success, I just want our lives to be normal again.  We have been through two surgeries, Ipi clinical trial, IL2, BRAF testing only to find out he doesn't qualify, Ipi compassionate which has swelled his pituitary gland so it is no longer functioning.  I know people have dealt with this for longer than we have, but our lives are constantly being turned upside down.  We have a 13yo daughter we have to leave home to deal with this on her own, while we trek to Boston for treatments or he ends up in the hospital unexpectedly.  If we had just a glimmer of good news, I might feel differently, but now we are looking at going to NIH for three weeks for TIL treatments with even less hope of success than anything else we've tried.   His disability is almost out, his fmla time is up.   In less than three months we will be without income and without health insurance unless we pay exorbitantly for it.  Social Security/Disability has a six month waiting period and you have to prove that the condition will end in your death.  Just needed to vent.  I would never say any of this to my husband.  I would encourage him to fly to mars if it might make a difference, just feeling overwhelmed with the news that yet another treatment has failed him.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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