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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Jacki, Just checking in to say you are in my thoughts & prayers. I hope that you are well & you are not experiencing side effects from the WBR. Mary

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Kosta's picture
Replies 4
Last reply 11/4/2011 - 5:01pm

Hoping for the least side effects and better results than Zelboraf.

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LynnLuc's picture
Replies 3
Last reply 11/4/2011 - 11:14am

I am sooooooooooooo excited! I am going to go to a session at the 2011 International Symp. in Tampa on Friday...skipping work but hey...I hafta go!!!

I am going to this session thanks to a 'friend' at Moffitt and his connections to the organizational committee...I won't have to pay! The organizational committee person even wrote me an e-mail to confirm it :)    Lynn

10:30am to 12:30pm

Grand Ballroom

JOINT SMR/CENTRES SYMPOSIUM II

“Immunology: From bench to bedside”

Session Chairs: Antoni Ribas, Jeffrey Weber

10:30-10:45Immunobiology of immune checkpoints – Jedd Wolchok

10:45-11:00The microenvironment as a predictor of response – Thomas Gajewski

11:00-11:15PD1 blockade in the treatment of metastatic melanoma – Mario Sznol

11:15-11:30Current and future status of adoptive cellular therapy -Jeffrey Weber

11:30 11:45Combining BRAF inhibitors with immunotherapy – Antoni Ribas

11:45-12:00Combining ipilimumab with other drugs – Steven Hodi

12:00-12:30Panel discussion/Q&A

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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sss's picture
Replies 2
Last reply 11/4/2011 - 8:46am
Replies by: Anonymous, dearfoam

To say I am very disappointed would be an understand.  While the scans showed shrinkage of many tumors throughout abdomen, there were a few that had grown slightly. My liver enzymes are creeping back up. And there are now mets in brain, which are fairly widespread.  So the recommendation is WBR and Switch from Venurafenib to Ipi.  can't say I am excited about either prospect. I am to meet with radiation oncologist on Fri for initial consultation.  Med onc office thinks I can keep working during WBR. I would appreciate input from those who have been there.

We told our 2 daughters last night. The news was traumatic for them (ages 14 & 12) to say the least. A rough night for all of us

sss

Life goes on as usual. There is no other way.

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Anonymous's picture
Anonymous
Replies 16
Last reply 11/4/2011 - 8:27am

We have an opportunity to participate in a clinical trial--ipi v. interferon.

We decided before knowing we could be in a trial that we don't want interferon, but we want to do something. From all of the research we have done, including this blog, first and second medical opinions, friends and family we made a decision. We think/hope that ipi gives us the best chance.

Clearly, it is our right to change our mind at anytime. The informed consent form makes it clear in bold letters on the front page. But since we have already made our decision, is it right. One doctor acquintance says he'd do it in a heartbeat, the clinical trial NP made it clear we needed to commit, and stick to the groundrules--Arm A or Arm B.

Life or death, black or white or gray. Right or wrong. What would you do if you were making the decision for your kid?

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windy's picture
Replies 2
Last reply 11/4/2011 - 8:01am

My name is Windy, 43 years old and I have been diagnosed as stage 4 met in stomach.

The story begins in 2009. I found a mole on my back and was sent to a derm, who sent me to a surgeon. It was found to be melanoma but completlely contained (it had not broken through into my epidural and had clear margins) fast forward to February of this year. I did not feel like myself, very tired, didn't feel well and run down.

Found my first two tumors on my head in May and was told it was an infection. This happened 2 more times (dx of infection) so I made an appointment with an oncologist (July). Within 7 days she had me diagnosed with sate 4 melanoma contained in the soft tissue and lymph nodes.. Our first attempt at treatment was Silatron. After 5 treatments more and more tumors had appeared. My Oncologist sent me to get an upper endoscopy and found that the cancer had met in my stomach.

I was sent to MD Anderson for treatment. Biochemical treatment was started with IL2 / Interferon / and 4 chemo drugs. I went into the hospital and stayed for 6 days while the medicine was administered. I made it though 2 treatments and found out that I am BRAF positive.(Nov) I will start the drug tonight before bed. 4 pills in the morning and 4 pills at bed (12 hrs apart).

Problems that I encountered during bichemical treatment.....

Dry mouth - used biotene, works great.

Adverse response to drinking water - vomitting; started drinking flavored water.

Dehydration - after my first treatment I ended up in the hospital with dehydration. After the second dose my doctor had fluids delivered to my house for 5 days along with a pump. This was EXTREMELY helpful. Eating soups helped also.

Unquenchable thirst - try eating something sour or salty, sounds stupid but it really works. I used vinegar and salt chips.

 I have lost 40 lbs and most of my muscle tone. I wish that I had forced myself to walk more often during the earlier treatments. The road I have ahead of me is still long, but I can see the light.

Hope that this was helpful.

 

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Lisa13's picture
Replies 11
Last reply 11/4/2011 - 7:08am

I had my appointment today with my Dr and went over my CT scans.  As mentioned before, I had the majority of my nodules shrink - by 50%!!  He said this is incredibly successful and in his trial, I'm the first patient with the fastest decrease.  I had 2 nodules that grew a little bit, so instead of waiting 12 weeks, he's going to scan me in another 4 weeks to see how they look.

Now for the brain lesion they found. It's 2cm, but I have absolutely no symptoms and my neurological tests were perfect.  I have a bran MRI tomorrow so they can look more closey at it as they don't really know what it is. My dr. said it' doesn't look like a typical melanoma - it has no blood vessels and it's very clean looking. He said he suspects melanoma cause what else could it be, but they're double checking everything since it's very unique.  It's deep in the left side of my brain and I'm a great candidate for gamma knife. I know this really sucks, but he's actually never seen anything like this before and has a group of people waiting for the MRI to review what's next.  He said I could be lucky to have this 1 lesion removed next week and not have it come back anytime soon and hopefully the ipi will take care of any microscopic cells.  Another good thing is that the cancer has not spread anywhere else, so even though it's probably in my brain, it's nowhere else and I'm a responder to ipi! 

Getting the brain MRI is a little nervewracking as it looks more closely at things, but he's pretty confident there is just 1.  He said he believes it's not very agressive because it has no bleeding, vessel and I have no symptoms.  My hope is that this is a miracle and is benign or it's just 1 that comes out next week!

Lisa

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

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/4/2011 - 2:14am
Replies by: Najade, Anonymous, awg, MichaelFL

Hi everyone, (sorry this is long & thanks for taking the time to read my post)

I am new to MPIP and need your help. I follow the posts but this is the first time
I am posting. You are all wonderful & I hope you have some advice for me.

I am stage 3C. I have had 3 sugeries (2009, 2010, 2011) to remove 3 recurrences
all in the same place in my thigh. My most recent surgery was 2 weeks ago today.
My tumors/ subqs recurrences seem to continue to grow in the same area in my thigh.

My surgeon indicated that he would have to take out the new tumor all the way down to
the facia of my muscle & then also cut out the old scar area & beneath to get
clear margins. He told me that my new scar would only be 1 inch longer than my old because
he was going to use the old scar area.

He said that he would have no problem stitching up the area on my thigh that I
would have more than enough skin to pull together. I am 62 & my skin is saggy skin so my
skin would be able to be stretched. At the pre-op appointment he said this was
an easy surgey for him.

When I woke from surgery, my thigh was bleeding through the gauze over my
incision. This was the first time that any of my incision on my thigh ever
bleed.

Also, My surgeon made the incision approximately 6 inches longer beyond the old scar
because he told me that he could not close because my skin came together funny & my skin
looked like rabbit ears at the ends of the incision so he kept cutting my skin until the
ends came together better.

Plus I am bruised from the top of my thigh to below my knee (both sides of my
leg). The top of my leg is swollen all the way down to my knee. I have numbness from
my thigh to my knee. I knew that he would be cutting nerves so I understand why I am
numb. Maybe I am being paranoid but I suspect that he is not telling me what really
happened because of the extensive bruising. The surgeon told me that I am bruised so
much because of cutting close to veins.

Now that you got the picture, yesterday the surgeon confirmed that I also have a
large hematoma at the top & along side of my incision & a large seroma further
done the incision. The surgeon recommended that both the hematoma & seroma will
eventually dissolve after a few months & I need to be patient. He rather not use
a needle to drain/resolve the hematoma & seroma because it would risk infection.

Needless to say, I am very upset. I am very active & run daily. Now I can barely walk.
It is painful & the hematoma & seroma do not seem to be going down. My surgeon
told me to comeback to see him in 1 month and to continue my normal daily activities,
but not walking too much and watch for signs of infection. Does 1 month seem like a
long time to wait to see the doctor again.

Thanks again you for taking time to read my long story. I would appreciate any advice,
and/or your experience with hematoma & seroma. Any recommendations what can be done to
resolve hematomas & seromas. Can ice or heat help reduce the swelling?
Any other comments and feedback about my situation are sincerely appreciated.

God Bless you all
Suzy

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gabsound's picture
Replies 5
Last reply 11/3/2011 - 9:04pm
Replies by: gabsound, Charlie S, rbruce

I've finished my 4th round of biochemo and have probably dropped 10-15 lbs which seems to me to be almost all muscle. My oncologist did tell me that IL2 does metabolize muscle. Just adding this to the list of effects from IL 2.

Unfortunately I still have a lump in my leg that did not go away with the treatments. I've been following this, since the last surgery July 1st with ultrasound as that is my job and I have access to a machine and my own leg. Originally thought was a hematoma and was getting smaller. Two new lumps are now seen right next to that area.

Pet/ct and brain MRI next week to see where we are at. Hopefully still at just in transit disease in the leg. The oncologist is talking maybe another surgery, at least for biopsy, and then he mentioned maybe IPI combined with something else (clinical trial maybe). He didn't really want to speculate too much before all the facts are in hand.

It's discouraging to say the least. Failed interferon and now biochemo. Dx in Jan / Feb this year. Ulcerated lesion, high mitotic rate of 10, micro met in one node w all other nodes clean. Not sure if my stage has changed to 3C.

BTW my sister w breast CA finished her chemo with nothing palpable left. She sees surgeon today to see what the plan is. She is doing well.

Keep up the good fight,

Julie in Las Vegas

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cwu's picture
Replies 8
Last reply 11/3/2011 - 6:06pm
Replies by: Anonymous, cwu, jim Breitfeller

Hi all,

My father just finished his third dose of Yervoy and his onc is not optimistic it will work and told us there are limited options if it doesnt .  He said we should also start looking into hospice care.  We are in shock, disbelief, and having difficult time accepting this.  I am trying to get a second opinion from another facility and was wondering if you all have any advice on facility, melanoma doctor, contact info, and any tips. I am still on the fence about whether I should tell his doctor that we are trying to get a second opinion because I dont want to do anything that may compromise dad's care. The problem is dad cannot travel since his leg is swollen and lesions break and bleed so I was hoping to get a doctor to do it via emails/phone calls if I can send them medical records and pictures. I am willing to travel to meet the doctor but dad is not able to. 

I am going to look at anti-pd1 trials too but want to see if you can advise me about getting second opinion.

Chau 

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Hi I finished my 4th round of biochemo treatments about 10 days ago. My biochemo consisted of Temador, IL2 and Interferon injections. Hospitalized in ICU for 5 days each time.

I still have  a luump in my leg which I think is more tumor and its getting larger. I do ultrasound for a living and have been following the lumps-big change in the last 10 days.

Stage 3C ulcerated lesion, single micromet in sentinel node. 1 month hose dose interferon failed. 2nd surgery 7-1-11 lump removed from current spot that had melanoma cells and was falling apart.

Will get PET/CT either tomorrow or monday alson w brain MRI.

I'm freaking out. Dr. mentioned a bx for sure last week when I was in hospital and mentioned Yervoy ? combined w something else. He didn't elaborate.

I'm BRAF and C kit negative. Dr. said I'm positive for NRAS but I didn't see that on my copy of report. Test also said my tumor was sensitive to Temador.

Any thoughts?????

Julie in Las Vegas

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/3/2011 - 1:16pm
Replies by: lhaley

Hi,

 

I have been traveling so I am trying to catch up on everyone. Hope Val is doing well. Has anyone heard from her. I pray all is well with her.

 

Mary

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dawn dion's picture
Replies 11
Last reply 11/3/2011 - 6:45am

Hi all

I haven't posted here in a while because there has been nothing to talk about - been doing BRAF/MEK since march 2011 and as of today we (drs. and I) have decided that it is no longer working.  The one spot I have has started to grow again albeit slowly after shrinking over 70%.  Discussing many options on the table among them being IL2.     This is a option I considered doing before BRAF/MEK and I am once again thinking about.  I know there are lots of you out there with experience so I am looking to you to learn.   I remember that one of you has a great list of what to do and bring with you to the hospital when doing IL2 - would appreciate being pointed in that direction.   I won't be doing this until after the beginning of the year so if anyone else has any suggestions other than ipi (been there done that) also greatly appreciated.

Hugs and Smiles to all

Dawn

 

 

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Majalist's picture
Replies 2
Last reply 11/3/2011 - 6:01am
Replies by: Majalist, shelbug66

Hello there,

I am Marleen from Belgium, and I was diagnosed melanoma in august 2010. I inderstand, after reading a lot of messages this afternoon, that I can call myself very lucky since I am only stage Ib (at this moment). Still I am a little anxious, because I see my dermatologist within 1 hour since she has removed a new suspected spot. I guess it is always in the back of your mind things can go bad very fast. I want to be prepared incase things go wrong. I am a pharmacist and I try to follow the possible medical interventions also from a interest in medication. Yet I hade experienced that there are a lot of specialists in this group! I really admire all the fighting, believe and hope I read here. You are all in my hart and prair. Best regards to you all!

Be grateful for the gift of life

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LynnLuc's picture
Replies 2
Last reply 11/3/2011 - 3:45am
Replies by: JerryfromFauq, deardad

My thyroid is toast...and  due to the MDX 1106 ( anti PD 1)...oh well so I take a pill every day...not a bad exchange for NED. Lynn

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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