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.

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Hi everyone,

I feel great so far. Had my first IPI infusion yesterday. I saw my oncology surgeon before seeing my melanoma oncologist because of the two open wounds and a possible infection.I pointed out my 5 new melanomas nodules. He agreed that they were melanoma, as they look like how mine usually present. He brought up the drastic option of an above the knee leg amputation. There is no known melanoma anywhere else in my body. We could get rid of the melanoma and the unhealed wounds in my leg by amputating. I told him, as I bawled, that I wasnt afraid of having my leg amputated and having to have a prosthesis. I am afraid of doing that AND melanoma rears its ugly head again, further up on my thigh, or elsewhere in my body (an organ, etc). OR I worry about my "stump" not healing, just like the two wider excisions have not healed. He said he heard what I was saying and agreed there were no guarantees on either concern. He just wanted to bring it up as an option that I SHOULD think about and consider. Oh and I had another celluilitis infection, which I had suspected and was the reason for my visit. I cried so much during the visit but finally pulled myself together as I had my oncology visit and then my IPI treatment. I managed to get, with my mom's support from 4L to 3K ,but felt like I couldnt get enough air. I knew I was on the verge of a panic attack. I made it to the oncology office and I knew my surgeon was calling my oncologist. As soon as he saw me as he was walking by he said "I'll get you into a room as soon as possble".The nurse came out right away and took me and my mom to a room. He came in right away and was GREAT! I said I was afraid I couldnt do the IPI because of the leg infection...he said dont worry, this is what we are going to do....we are going to call your leg issues a chronic indolent infectious process and put you on augmentin twice a day for two weeks then once a day for months. Then we can get you into the trial. I told him I needed som ativan as I was getting panicky and couldnt breathe well. He knew I was upset and he said as soon as we get you into the clinic rooms for IPI I will get you some ativan. That helped me calm down. He then spent the next 45 mintues talking to me and my mom about where leg amputation fit in as far as my clinical case of melanoma. He said he wanted to give IPI a chance and then try IL-2 and/or other chemos before we made that decision. He has had some patients who opted for amputation of their leg. He understood how bad I felt and how scared I am. He did his physical exam, agreed with all the nodules I found being melanoma and he found a spot behind my leg that I hadnt seen. We then went to the clinic rooms and the first thing they did was give me IV Ativan, then an augmentin pill to get started and then eventually the IPI arrived and that part went really well. The staff was great, everyone was perfect and so caring. I slept and dozed and mom said I asked the same questions twice a couple of times. Haha, that darn ativan. I got a prescription for lorazepam as I know there are just some days I need it. I know some people here have opted for leg amputation....can you write to me and please tell me more about your specific situations??

Thanks so much for reading all of this (if you indeed made it this far!)

Vermont_Donna

stage 3a

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/4/2010 - 2:14pm
Replies by: Charlie S, Jamietk

Hello.

I have recently been approved for MediCare but I do not understand what MediCare is.

I was told that I am now recieving MediCare benefits as well as the MediCaid benefts I was previously on.

What is the difference in the two?

Any help or personal experinces will help.

Thank You.

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Sherron's picture
Replies 41
Last reply 12/4/2010 - 9:57am

He was the most wonderful loving man, Christian, father, husband, best friend, and soul mate a wife could ever want or wish for.  December 4th would have our been our 43rd anniversary. We went to Hospice yesterday afternoon...and by 1:10 am.  the angels took him to heaven, no more pain for him.  Something (God) woke me up 10 minutes before he passed.  What a blessing.  I will miss him so much, my heart is broken...but he is pain free, and Melanoma has him no more!! 

Take Care,

Sherron, wife to Jim FOREVER!

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glewis923's picture
Replies 7
Last reply 12/3/2010 - 8:31pm

Hey ALL-  Got 6wk. CT scan and all my lung nodules (nice word for TUMORS!!!) have NOT increased in size. ie: they are relatively stable compared to last scan where they had tripled in size.  I hesitate to "crow" too loud about any shreads of semi-good news, but I'm so grateful that, at least temporarily, my lung tumor growth has "stabilized" and there has been no further spread to other organs as of yet.  FYI:  I'm on Taxol/Carboplatin/Avistan.   I think of ALL of you quite often although I don't always "share" that much......I pray for ALL- especially those younger than I (48).   Just thought I'd finally post something semi-positive about myself; instead of lousy advice or tiring questions.

 

Love to 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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swissie's picture
Replies 3
Last reply 12/3/2010 - 3:43am

I haven't really posted on this new forum, but now I need some help.

I was diagnosed with melanoma in September 2008 (1.4 mm), with a "negative" SNB. I found a macrometatastase in June 2009. Of the 12 nodes, 3 had cancer, one of which was outside of the node.

In September 2009 I started a double blind trial with ipilimumab (10 mg/kg), after my 4th infusion I had a colitis and knew I am in the ipi arm of the trial.
I had my 8th round of ipi two weeks ago!

Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; min grade 3), a rash  (a week BEFORE my 8th! infusion; min grade 3).
My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

At the moment, my biggest problem is exhaustion.

My first question is if there are others like me out there who had 8 rounds of ipi or more? How are you feeling? Any new side effects?

My second question is if I should quit the trial. It seems to be taking it's toll. Being exhausted all the time sucks big time. I was very tired from the beginning, but it's getting worse every round.
The extreme rash was only a week before my 8th infusion, so I seem to have late responses.

Any smart ideas?

Thanks,
Sabine
 

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himynameiskevin's picture
Replies 29
Last reply 12/2/2010 - 6:38pm

Sorry for my absence. Been thinking about you all a lot. It's been a pretty busy month... a lot has happened. I'm not sure where I left off but here's an update...

Well,exactly one month ago I had my CT scan and two days later I found out that IL-2 was unfortunately not my magic bullet. But, I like to think that since it didn't work on me, I've raised the odds for it working on someone else. So that's good. They did say I may have partially responded due to the slight softness and shrinking I felt on my chest and back, but those ones don't really matter and it's not enough to call for another round. So.. since then...

During that appointment, my doctor had mentioned "adoptive cell therapy" clinical trials, a therapy they offer in Bethesda MD at the National Institute of Health to qualified patients, it was actually the first thing he mentioned months ago but I didn't qualify because my brain lesion, but since then, that's been cleared up, and with 3 months of clear brain MRI (which they require), I might be a good candidate. So him and I made some calls, set up an appointment, and I flew to Washington DC. I got to the NIH, went through security, checked in, got my badge, did all my necessary blood work, urinalysis, chest scan, EKG, all the loops and hoops over the course of the day, and finally met with my possible team of doctors. I was supposed to go home and they'd call me in a week to see if they'd even accept me, but, miraculously, they accepted me then and there, and asked me to stay two extra nights to do a surgery and remove the mass from my back. The next day they wheeled me to the OR, put me to sleep, and I woke up feeling great having that thing off my back. Finally.

By the way, a brief summary of adoptive cell therapy: They remove a tumor or piece of a tumor to extract some natural t-killer cells from it. Then in a lab they see if they can harvest the cells. Usually they can, sometimes they can't. If they see they're growing, they continue to harvest, possibly for many weeks, until they have about 6 billion of them. Then there's a three week procedure where they give them back to you. And then you wait, hope and pray that these t-cells are abundant enough, strong enough and smart enough to recognize the bad stuff and go to town on it.

So back to the update. Less than two weeks after the surgery they called me to tell me that cells were growing. Big relief because if they don't grow.. well then there's no cells. They said they'd call when there were enough for me to come back. And again, miraculously, I got a call two days later saying that my cells are growing phenomely fast (faster than they'd ever seen.) and that looks like I'll be starting the therapy a lot sooner then expected. So I flew back out the next day for prep work, another brain MRI an abdomen MRI and a CT scan of my chest along with more blood work and a long morning of phresis where they took a bunch of white blood cells for 4 hours. Then I flew home with an appointment to come back this Sunday/Monday and start my 3 week therapy on Tuesday.

Tuesday, unfortunately will consist of me starting a week of traditional chemo, not to target the tumors but to kill my immune system, they want it gone so it doesn't effect or "water down" my new immune system.  Then on the second Tuesday, they give me my cells back with a week of IL-2, just like IL-2, one bag every 8 hours as long as tolerable. Then the third week is recovery week, getting me back to normal so hopefully I can be home before Christmas. Then as I said, I just wait hope and pray until they call me back and scan me.

So that's that. It's been a long and busy month.  

I'll have to browse the past posts and see how you all are doing, but I Hope everyone is doing good, staying positive and enjoying the day off today, hopefully with some good company.

Talk to you soon. -Kevin

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JohnHen's picture
Replies 17
Last reply 12/2/2010 - 5:28pm

 

I am a new member of this exclusive club and I am searching for some thoughts on a few questions. On Tuesday, November 16, I had a sentinel lymph node mapping and a wide excision on my back left shoulder for an ulcerated tumor that was first noticed mid August as a tiny bump,and initially removed about 4 weeks ago. The pathology after surgery came back as: 

Breslow thickness: 7 mm; Clark level: 5; mitoses: 15/mm2; ulserated

13 lymph nodes were removed with two positive for macroscopic cell growth both inside and outside of the two nodes

Clear margins were achieved except for the bottom where only 1mm clear tissue could be achieved before hitting muscle

Presently, I have no symptoms or indications of any other tumors.

I have been doing a lot of reading so I have a pretty good idea of where I stand statistically. My questions today are:

1. How long should I wait after surgery for the PET scan in order to avoid false positives?

2. Living in Southern California, what would be the best center(s) for melanoma treatment? As of Jan 1, I will have a PPO that includes City of Hope, Ronald Reagan UCLA Medical Center, UCSF Medical Center, and I believe Univ. of Stanford Medical Center. Possible others but I have seen these rated high as overall cancer centers. My current HMO will allow a second opinion after my PET scan so I should be able to at least pick the center to get started.

3. Depending on which stage i am at after PET scan, can you suggest the most beneficial treatment to pursue. I am open to clinical studies.

Heck of a way to begin our retirement as of July 1, but we will do all that we can do and hope that I can survive until a true cure becomes available. I appreciate your thoughts in advance.

John, 58, healthy and hopeful!

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davekarrie's picture
Replies 13
Last reply 12/2/2010 - 2:21am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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ErikaHouston2's picture
Replies 6
Last reply 12/2/2010 - 2:05am

Does anyone have any experience with Remicade & Melanoma? I am recently diagnosed with Crohn's and GI doc wants to start me on Remicade and is not concerned about the melanoma, The MD Anderson Dr. or melanoma did not say flat out "no" but they were not excited about it and thought I should attempt other treatments first. Remicade is a TNF blocker and scares me, not sure worth the risk.

My melanoma was stage I.

Thanks for any input you may have.

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/2/2010 - 1:45am
Replies by: LynnLuc, Anonymous, Rocklove, King

Anyone on the NCI Moffitt  Florida mdx-1106 trials??? Would appreciate any feedback. thanks chris

 

"Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy.

http://www.clinicaltrials.gov/ct2/show/NCT01176461?term=mdx-1106
http://www.clinicaltrials.gov/ct2/show/NCT01176474?term=mdx-1106

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redbaron0511's picture
Replies 3
Last reply 12/2/2010 - 12:55am

I have recently been diagnosed with metastatic melanoma,  May of 2010, and was wondering if anybody has any information on the use of LDN ( low dose naltrexone)? I've been doing some research on this interesting drug, which was FDA approved in the 80's for use in treating drug and alcohol addiction, at the 50mg dosage. There are a few dr's that are working with the dosage of 1mg-4.5mg, and are having pretty good results. I went to my oncologist with some info on LDN, but he acted like I never even brought the subject up. I can understand his reluctance as LDN is considered to be an off brand treatment.

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Vermont_Donna's picture
Replies 22
Last reply 12/1/2010 - 9:58pm

Hi everyone,

I am quitting work so do the IPI trial and for my leg wound(s) to recover (yes one more incision has opened up after the stitches were removed and it is the siza of a dime, the other hole is a tad bigger than a quarter...unhealed wider excisions). BUT, in checking y leg which I do everyday, I have found THREE more melanoma tumors, in addition to the three that I discovered a month ago. This is the ones I can see. I am scared about what I cant see. I am just plain scared, and discouraged. YES I am starting IPI this week (Wednesday), so I will have 6 tumors to mark the effects of the drug. Just wanted to vent to people I know who will understand.

Vermont_Donna

stage 3a

Diagnosed 9/06

SNB October '06

LND December '06

11 months low dose Interferon (after failing high dose due to infected PICC line) 2007

7 months Leukine 2008

Isolated Limb perfusion September 2009

5.5 weeks radiation to part of my leg March '09 to April '09

6 weeks radiation to another part of my leg July  '10 to August  '10

lots of wider excisions for melanoma and suspected melanoma

lymphadema big time and lots of treatment and wear compression garment daily and night-time garment nightly

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jolainajo's picture
Replies 2
Last reply 12/1/2010 - 12:39pm

Hi everyone,,,, I started my Ipi on Oct 29th, had my 2nd infusion  Nov 19th, I am feeling extremely tired, and it seems that one of my tumors on my leg, posterior, is getting huge, hurting, and it feels like a sunburn, not to mention, I had brain mets before I started Ipi and had gamma knife done, but I see this circle rainbow and it flashes and it comes and goes when I get hot, or exert myself too much. I have gained weight, and feel miserable. I need to know if all of this is normal. I am scared that the melanoma is just getting worse, especially since I feel this tumor constantly. I have other tumors that are subq too, but they dont seem to be feeling or getting large like the one on my leg. I need to know if any of you have had similar reactions, and possibly, need to know when you noticed reduction in size of the tumors if it is working, how far along in the treatment you noticed reduction. PLEASE respond, I need some answers. Thanks............... Jolaina

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Terra's picture
Replies 13
Last reply 11/30/2010 - 10:33pm
Replies by: Janner, simone, Anonymous, JohnHen, Ranisa, Jamietk, Terra, Lori C, Fen

Hi, I haven't posted or responded to any posts for a long time.  Derek has been on a trial since he progressed to stage IV, randomied into the chemo arm for a right hilar node.  We have been concerned about two spots on his ribs that are now nothing, although he tested negative for BRAF he is positive for NRAS, and a third opinion from a cardiothorastic surgeon saysthe node is resectable with 20% complications.  We also should find out whether the DTIC is doing anything in a week and a half.

I returned to teaching in September after mat leave with my second child. We have a 3 and half year old and an 18 month old.  I just found out I was pregnant again.  Not to be too speciifc but it is diifciutl to see hopw this happened, since the spring Derek has had surgery and treatment and nerve problems so there wasn't much chance to get pregnant and I was on the pill, but here we are. 

We are trying to decide what to do and I need some advice.  Derek has said he is not sure he can physically handle another baby and that emotional it is so difficult to look at the two we have now and know there is a very good chance he may not see them grow up let alone to rbing another into the world he may not know and of course we are both concerned, him more than me about how 1 parent can bring up 3 children.  Financially we are good, our parents live in town but are in thier 60s already.  I know this is our decision but I am having such difficulty and needed to hear what other patients and caregivers might have to say. 

 

\Thank-you for responding

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NeilG's picture
Replies 4
Last reply 11/30/2010 - 9:04pm
Replies by: dian in spokane, Anonymous, makedoandmend

Recently had a recurrence on my back after being NED for 2+years. I was initially stage 3a and went through the year of interferon. Now I had an intransit metastasis under left shoulder blade. I had the surgery and am currently looking for adjuvant treatment. I am having problems finding clinical trials and debating on doing one. Has anyone w/ a intransit melanoma gone through a clinical trial and what are some good resources to find one. Thanks so much for the help, it is much needed.

God bless.

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