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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jene8511's picture
Replies 16
Last reply 5/28/2011 - 11:27am

Hi Everyone..I will try to keep this as short and sweet and understandable as I can..

I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma. 

I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued. http://www.gmmm.com.ve/lectura/00000658-200906000-00021.pdf

It brings me to ask...do I really need to have this done? I feel as though they want to use me as a lab rat....take my nodes, see if anything is there..and then the course of treatment will be the same...( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me. 

I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is...if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway. 

Has anyone elected NOT to do this surgery??

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mimi0201's picture
Replies 2
Last reply 5/28/2011 - 9:21am
Replies by: Cate, Carol Taylor

     My husband has been deemed too weak for Yervoy and is now at home with Hospice care.  This has been a long journey with more to come. 

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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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Nicky's picture
Replies 2
Last reply 5/28/2011 - 5:59am
Replies by: Nicky, Carol Taylor

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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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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I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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nickmac56's picture
Replies 2
Last reply 5/27/2011 - 3:03pm
Replies by: TracyLee, Vermont_Donna

 

Yesterday was my wife's first brain radiation treatment using the Cyberknife method. It went smooth as silk. The place (Swedish Radiology in Seattle) is quite impressive - high tech meets spa. The actual treatment itself is about 40 minutes. But there is a bunch of time for set up, radiologist and physicist sign-off of the plan and patient visual identification. She will have five treatments total. They have the room set up with flowers, nice furniture, music of your choice, and warm blankets to cover you up. But she is alone in the room when it all happens; the techs are in a control room just outside, and the door that gets closed is like a bank vault door - the walls in the room are two feet thick. From the control room they have three cameras and audio communication so they can track what is going on.

"Lenore" is the robotic delivery arm of the radiation. She has six axles and can essentially contort into any position around the head to deliver the beams. Meagan lay on a moveable bed. She is strapped down and wearing a mask (formed previously of a mesh polymer) to keep her head still. It's all computer driven based on the radiation plan. If she shifts even slightly or through her breathing her head moves, the bed and Lenore adjust. 

I reviewed the plan with the radiologist and he showed me the concentric rings of intensity they were using around the targeted area (the boundary of where her two tumors were removed during her craniotomy). They go after a bit of margin.
So far no ill effects. She is on steroids twice a day to control brain swelling throughout treatment and then will taper off them at conclusion of the treatment. No indication on the MRIs from last week of any cancer activity outside the known area.

She's home and feels fine, except she said she felt a bit fuzzy as the evening progressed (treatment ended at 5:00pm). The only expected other side effects are fatigue and headaches.

She has another treatment today, then three next week starting Tuesday. Even Lenore gets the Memorial Day weekend off.

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

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lovingwifedeb's picture
Replies 5
Last reply 5/27/2011 - 12:05pm

Please light a candle for Bob, loving husband and my best friend, The Gambler. He is currently losing his battle with this disease as his brain is swelling and hemorrhaging at a rate too quick to repair the damage done. We are in the process of assessing his situation and bringing Hospice into our home to help us get through this next phase.

I have kept a journal on our family blog and will try to update soon:

redesign08.blogspot.com

Deb
lovingwife, to Bob stage 4 melanoma

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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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