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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Karin L's picture
Replies 2
Last reply 11/5/2011 - 7:06pm
Replies by: Theresa123, j.m.l.

I have absolutely NO medical proof with this...just a gut feeling.  A few times I have seen these two issues questioned (different posts) as possible side affects from Yervoy treatment.  I haven't had Yervoy, but I did do HD IL2 Apr-Jun 2011.  Both are immunotherapy treatments.  I have had both ringing in the ears (tried stopping asprin, no help...MRI of the brain done Wednesday, all clear) and lots of hot flashes since treatment.  The tinnitus started about 2mos. ago...the hot flashes about a month or so after treatment (during treatment it was night sweats which is different).  Are these related to treatment?  I have no idea.  I just thought I would put this out there for someone else who might be searching for answers or possibilities in the future. 

Not only is this disease horrid, the treatments can be horrid with their side affects so any little bit of hope helps calm the nerves sometimes.

Karin

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Lisa13's picture
Replies 22
Last reply 11/5/2011 - 6:52pm

Was told today I have 2 small mets in my brain.  I know this is devastating, but I would prefer people not to make me feel how horrible this is. Yes, it sucks, but there are people on this board who've had or have brain mets and are still here.

Gamma Knife is not in the cards for me considering 1 of them has already bled. They're both in very good spots in the brain not causing any problems right now.  Because I'd have to wait a month for the bleeding to absorb, they suggested WBR and then Gamma Knife. I know people have been very against this treatment, but I was told that most younger people tolerate this treatment quite well and only 1% of people get severe side effects.  The goal is to start WBR next Wednesday for 10 days in a row and then if they're still there, they'll be able to gamma knife them out of there. Apparently there is just above 80% chance of eliminating the tumours and possible mircroscopic cells. I know nothing is guaranteed, but I'll take these odds at the moment. I know many people have had success from gamma knife (SRS) so WBR should also prove successful. IPI and radiation could continue to keep the brain mets from coming back for a while - you just never know.

Yes, I'll lose all my hair, but they have some pretty divine wigs!  I have read on this board that people who've had brain mets are still hear - some years later, some working, etc, etc. There is always hope and I'm not giving up!  I still feel fantastic and I'm happy that I'll still enjoy life going through radiaion.

Anybody done WBR which kept the mets away for a while??  I know lots of you have had gamma knife which has worked, so that's a great thing!!

Lisa

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

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Anonymous's picture
Replies 9
Last reply 11/5/2011 - 1:00pm

Need to know if anyone else has been in my shoes and if so, what advice they can offer.  I had bad stomach pains for approx. 2 years - CT scan and upper and lower GI tests did not reveal anything.  A second visit to the ER for partial bowel obstruction prompted surgery on 9/22/11 which revealed a tumor in my small intestines.  The tumor and about 5" of my small intestines were removed.  Biopsy of tumor indicated melanoma.  I had no previous skin melanomas so needless to say, the doctors and I were shocked at the melanoma diagnoses.  Went to MD Anderson in Houston for treatment options.  All CT scans were clean and showed no evidence of the disease and I thank the Lord for this great news!    However, as the doctor indicated, there can always be a few cells floating around that won't show up on a scan.  According to my doctor, the decision to have any further treatment is in my hands, so needless to say I am very confused as to what I should do.  He said I could do nothing and just come back every 3 months for follow up scans to see if anything shows up, or I could have preventive biochemotherapy.  From what I have read, biochemotherapy is very brutal.  Any advice would be greatly appreciated.

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glewis923's picture
Replies 5
Last reply 11/5/2011 - 10:28am

Dear ALL:

Brief history:  Multiple Lung MMel tumors since Sept. 2010.  Started Caboplatin/Taxol/Avistan.  Seemed to hold them stable. Jan. 26th 2011: Multiple brain tumors found after "clonus" rght. leg twitching/siezures.  Had 7 SRS's and WBR all of Feb.(11 to 14 tumors present, all but 2 or three under 1 cm.)

March/April/May had IPI/ Yervoy 4 infusions) May scans show stable.....Aug. scans show some slight decreases in most lung tumors and brain pretty much stable.  Mid-Aug. started Zelboraf.  Oct. 1st scan shows most small lung tumors gone, and the 3 =/- 1 cm. lung tumors regressing (shrinking).  Brain still more or less stable -possible minimal shrinkage on all but one.

QUESTIONS:   Since "something" at least kept me stable (with some shrinkage in lungs)  from March to Aug. , common sense tells me it had to be Yervoy  that kept me that way.  I also give Yervoy some credit for brain being mostly stable, although the immediate SRS and WBR in Feb. kept me alive initiallt at least.   !)  Would re-induction of Yervoy (along with contiuation of Zelboraf) be a reasonable proactive approach?   2)  Would some other or added thing- like temodar be an option?  Being that i know i still have several brain tumors that are most likely "alive", should I seek another round of SRS targets- 3 or so more?  

Any ideas would be greatly appreciated.  I'm very lucky to still be alive now- considering the shear 3 of brain tumors initially found, but now that the Zelbofaf and remnants of Yervoy and radiation have kept me stable or regressed, shouldn't  I become as proactive as possible now and go for a "knockout punch"???

Thanks for listening, and i'm thinking and praying for ALL of You........I read the posts, but feel i can't add much to really help "clinically""  , but hope I help n my quiet "spiritually" .

 

Love ALL, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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I'm me, not a statistic. Praying to not be one for years yet.

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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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