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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jimjoeb's picture
Replies 2
Last reply 5/27/2011 - 9:26am
Replies by: jimjoeb, Carmon in NM

I have decided to consult with a naturopath to see if there is anything that I am comfortable with to complement the treatments that I have and will be receiving from the traditional medical system. Has anyone else done this?

Be Not Afraid-God is with you always Stage IIIa

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Replies by: dawn dion
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Tim--MRF's picture
Replies 3
Last reply 6/13/2013 - 1:57pm

I had a long conversation today with a patient who has had three boughts with mucosal melanoma of the vulva--all treated wtih surgery.  Now that she has gone the third round she feels that another approach is warranted.  Her surgeon is recommending resection of the vulva and lymph nodes, then treat with leukine.  A gynecological oncologist has recommended radiation.  She does not have the c-kit mutation. 

This patient has no computer and no access to a computer.  She has an appointment with a melanoma doctor tomorrow afternoon, but is completely confused as to what course of action to take.

Can anyone suggest questions she should ask of the doctor she sees tomorrow?  I know a few doctors who have treated a lot of mucosal melanoma, but some of the particulars are likely to escape me.

I wil be speaking with her again tomorrow late morning.

Tim--MRF

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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

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