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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Nicky's picture
Replies 3
Last reply 5/27/2011 - 9:13am

I'm 45 years old. and I feel as if I''ve been on this cancer journey for so long ( x2 melanoma (1 node) 11 years NED, radiation therapy), other skin cancers (squamous/basal (28 years) and on a check up today, another suspicious mole that the hospital want biopsied.  I try to be upbeat but it just gives you a wakeup call to always be vigilent with this disease and to regularly get skin checkups even when you are this long NED. I love life and again whatever happens, I'm prepared for battle.  I believe in being positive and after losing  many loved friends on this board, I have to keep fighting for their sake and for me and my family.

I still believe that if you can get this disease early enough you have a good chance of survival, be vigilent. 

Thank you for being there all this time and for being the greatest support to me over all these years MPIP.

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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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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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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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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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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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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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gtown's picture
Replies 12
Last reply 5/26/2011 - 10:22am

Hey what's up,

 I have been looking around for a cancer "hostile" diet but have found alot that had their own agendas or seemed less than reputable. I have had cursory discussions with my doctor but I figure you guys could point me to a website that would have the info I need. Also I'm waiting for the results of my SLN biopsy, the surgeon said the lymph nodes looked normal but he could not say what was happening at a cellular level. Has anyone had normal looking lymph nodes that turned out to be cancerous? Just curious. 

                                                                                               Gtown 

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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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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 6
Last reply 5/25/2011 - 2:13pm

Every since I was diagnosed with Stage IIIC melanoma on my right shoulder June 2, 2010 I do monthly checks on myself.  3 weeks ago I felt a small lump in my arm pit under my left arm. It was actually so small at the time that my husband could not even feel it.  I am 7 1/2 months into Interferon treatments.  I waited to see if the lump changed at all or went away because I know Lymph Nodes swell sometimes do to infection or sickness.  Last Friday I noticed it had gotten a little bigger, about the size of a marble and can easily be felt now.  It is not painful and it feels kind of soft.  I saw my Onc Doctor yesterday and he appeared to be pretty concerned and wants a biopsy as soon as possible.  I now have an appointment for consultation next Monday with surgeon.  I am glad it was so soon.  They are not sure if they will do the biopsy that day or schedule surgery.  I am trying very hard to stay positive as this could be nothing.  Has anyone else had a similar experience?

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

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Replies by: jimjoeb, mcanova, Lisa13, washoegal, Anonymous

I'm having this procedure on June 10th. Can someone explain the actual procedure to me and what I can expect immediately following the surgery and in the short term after that.

I'm scared and the more facts that I have, I'm hoping it will help to at least eliminate the fear of the unknown. I had my WLE and SLNB on May 3.

Be Not Afraid-God is with you always Stage IIIa

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boot2aboot's picture
Replies 6
Last reply 5/25/2011 - 11:07am

i got my pet scans back...the 'hot spots' were arthritis, not mel...after doctor shopping and lot's of reading and interviewing and indecisiveness...i am going to do bio-chemotherapy for my stage 3c diagnosis...if my insurance won't go for it...will try to get into the pittsburg study (ipi vs interferon)...i start june 2...wish me luck

boots

don't back up, don't back down

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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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