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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awillett1991's picture
Replies 27
Last reply 1/20/2013 - 8:58pm

Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned - says its Ipi induced. My 4mm brain met is now "tiny", the other went from 6 or 7 mm, depending on which report you read, to 5x3. Also there was no edema, and rad onc said I had it in my spinal cord due to "questionable leptomenengial enhancement over left frontal convexity". He discussed WBR, but we went SRS instead. Now this area is "less prominent". Scary.

The mass inside my heart had really taken off when I stopped Zel - from 7x11 mm on Sept 29 to 28x41x41mm with decreased heart function in 47 days off Zel. Now function is near normal with mass reduced to 19x30x34.

I have been back on Zel 63 days, actually taking the drug 48 of those days after a 48 day break to start Ipi. Unfortunately there is no way to ever tell if the Ipi worked according to my Dr because of me taking the Zel. Something is working though and for that we are very, very, grateful!!!

I created a Zel timeline w pie charts for my doc to see how much drug I'd taken, and the breaks I'd had. I've started an intermittent schedule of two weeks on/one week off to try to reduce side effects and get me off prednisone. And maybe it will prolong the response. I've been on pred since dec 14 when I was hospitalized for liver toxicity. ALP was 6x normal. Right now ALP is fine, but AST, ALT and Bili are all up and climbing so this is my one week off. Hopefully what held true in those poor little melanoma mice will work for us too. Squeak squeak.

Zel side effects still suck. Period. But I have a lot more energy, overall I feel great, and I'm alive!!!

I'm so thankful for everyone here, their positive stories and encouragement, and we are thanking God for this good news after a rough and scary few months. I have no regrets. Many prayers for continued good news for us all.

Amy

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FitzChieco's picture
Replies 8
Last reply 1/20/2013 - 6:52pm

Hi,  This site appears to be just we are looking for.  My brother has recently been diagnosed IIc and we have to make the decision about watch and wait or try the peg interferon for 5 years.  My brother, Kevin, has some congitive issues from birth that affect his balance and his short-term memory.  He does fine when he is able to follow a routine but otherwise, he gets confused.  He came through the surgery well and nodes were clear, hence the IIc.  But his initial path report was pretty bad (Clark IV, 5.4 mil and ulcerated.)

My brothers and I have to help Kevin make this decision.  We have several questions.  We are concerned about the side affects completely interfering with his routine and therefore negatively impacting his quality of life.  Questions like:

1.  We have read about memory loss and a sense of confusion while on interferon.  Has anyone experienced this and how bad is it?  does is go away (does full memory return) when treatments are stopped.

2.  Fatigue.  Kevin is a runner.  He is 55 and in great health.  His greatest joy is to run several miles a day.  Is there any way that he would be able to continue with this type of activity?

3.  Results.  Kevin's doctors are indicating that there is some evidence that this treatment has been effective in 15 - 20% of IIc patients.  What do you folks think about the reality of peg interfuron making a difference in the long run.  Doctors have said that the surgery went well and there is a 50/50 chance that it could rear its' ugly head again or never be seen again.

 

I am sure that these questions have been asked and answered before, but this is all new to us and we really could use some insight from those who have had similar experiences.

Thanks so much for any information.

Deb

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Jinx's picture
Replies 7
Last reply 1/20/2013 - 6:19pm
Replies by: POW, Gene_S, Josh, Jinx, washoegal

Hello

In 2006 I was diagnosed with ocular malanoma in my left eye. Soon there after I had plaque surgery at Jules Stein Eye Institute. I did lose most vision in that eye but was glad to be alive. One year ago in Dec, my yearly CT scan showed 5 small (1.2cm) spots on my abdomine. Six months later in June they showed no growth. This past Dec the CT scan intecated that at least one of the spots had grown (1.7cm) A biopsy was ordered and showed that it was melanoma. 

I have recetly gone to USC Norris Cancer Center and my Doctor there (Dr Wong) has recomended that I start  Yervoy infussion as treatment against the melanoma. I have read so many horrific side effects that I am now seeking others that may have gone through this tratment.

My question is simple...what are your feelings about this treatmeant, and what others might you recomend?

Not sure if my condition makes any difference, but here it is anyway.
I am a 59 year old male in good to great health (other than the melanoma) I am 5'9' and weigh 160. I am on a mostly glutten free diet, very little meat
I exercise 4 to 5 times a week....weight lifting and cycling. Never smoked. I havent even been sick in the last 15 years (the flu was the last illness) 

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mama1960's picture
Replies 6
Last reply 1/20/2013 - 3:29am
Replies by: JerryfromFauq, Tina D, mama1960, lou2, Anonymous

I have never been that person who goes to the doctor for checkups, but with all the Melanoma mess I decided to do the right thing. I had a blood test to check all the usual suspects, cholesterol etc. They are way out of the ball park and I am going to work on that. However, he also tested a couple of things I never heard of. They have to with inflammation and the possibility of heart disease. They are hs-CRP and Fibrinogen. The results are off the charts. High for the first one 2.9 and mine was 32.2. For the second one high is 464 amd mine is 658. He says this show a really large amount of inflammation somewhere in my body. Said it could be a result of cancer or the surgery, but there is no way to know for sure. Anyone out there familiar with this?

It is what it is.

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BrianP's picture
Replies 4
Last reply 1/20/2013 - 2:21am
Replies by: JerryfromFauq, Tina D, Anonymous, aldakota22

Hello fellow Melanoma warriors,

I have received so much information and inspiration over the last year.  I wanted to share with my fellow warriors a portion of a note I recently sent to my family and friends,

"Like a lot of cancers there is a significant chance of recurrence so I won’t know if I truly won my battle with cancer until I’m holding my grandkids about 30 years from now.  That’s the tough thing with being a cancer survivor; it’s always in the back of your mind.  If you really think about it though none of us really know how much time we have left on this earth, it’s just more prominent for cancer survivors.  The silver lining in all this for me is the realization that if I am fortunate enough to hold my beautiful grandkids many years from now I know I will have been a better husband, father and hopefully friend to many of you.  I will have counted more blessings, admired more sunsets, taken more walks on the beach, prayed more, loved more, and stressed less.  Not a day goes by now that I don’t thank God for all the blessings in my life and I have to admit I didn’t do this before my cancer.  I hope all of you had a wonderful Christmas and I pray for you and your family for a HEALTHY New Year."

It's been a tough run for me the past year but I know others have had it much worse than I and some are still going through tough times.  I hope many of you also are experiencing a richer life or have the opportunity to experience a richer life in the future.  I just recently retired from the Marine Corps and there's a saying in the Corps as well as the other Military services that goes something along the lines that freedom has an even deeper value for those warriors who have put it on the line to defend it.  In a way I think it's the same for those who have fought and are still fighting for our lifes in this battle against melanoma.  We all gain a much greater appreciation for how precious life is.

Take care,

Brian

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bikerwife's picture
Replies 6
Last reply 1/20/2013 - 1:06am

I have been posting for over a year now. I apologize to all of you. Jerry emailed me to let me know that the stages only go to four. The doctor that diagnosed Lynn with cancer told us it was stage 5 so I took him at his word. I've never asked our melanoma team what stage it is cause I knew it was bad.

Lynn had 7 brain Mets the first time. Later he had 6 more. He has a met on his kidney and inside chest cavity. He has had tumors pop up all his body. A lot of them disappeared with his Zelobraf. 

I apologize for saying something that wasn't so. This board has been very educational and helpful. I've seen a lot of stage 4 post and thought if there's is that bad my husband's must be worse. Know I think if they can do this could at stage 4 . We can to.

My husband leg has jumped up from 223 to over 300 so I'm feeling Zelobraf is coming to an end although he has no symptoms showing.  What ever stage it is its a fight. 

What God leads u to he will. Lead you through

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Kelli100299's picture
Replies 4
Last reply 1/19/2013 - 9:24pm
Replies by: Janner, Anonymous, Kelli100299

It was a year this month that I was diagnosed...Clark Level 4, Breslow 1.2MM. I remember being scared, upset, confused and sick. There hasn't been a day since that I haven't thought about it or everyone on this board. I had a Pet Scan in October that came back clear, keeping my quarterly Dermatologist visits, so far so good...and saw my Surgeon yesterday and I am healing well. Just wanted to check in with my MPIP friends and let you know that whether you are recently diagnosed or been fighting it for years. Keep your head up, it does get better and you are always in 'someones' thoughts. Much love my MPIP friends....Kelli

Life is ten percent what happens to you and ninety percent how you respond to it. Lou Holtz

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Rocco's picture
Replies 3
Last reply 1/19/2013 - 9:08pm
Replies by: Jim M., Anonymous, awillett1991

Just got scanned yesterday with results today.  Appears there may (or may not) be inflamation around my thyroid.  Any MDX/Ipi/Yervoy survivors that now have thyroid issues?  I finished my MDX/Ipi trial in Feb 2009.

Thanks for any replies.

Rocco, IV since 2005, NED since 2009 thanks to Ipi

Luke 1:37

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Brendan's picture
Replies 8
Last reply 1/19/2013 - 7:27pm
Replies by: Tina D, NYKaren, JakeinNY, DeniseK, Randy437, Swanee, aldakota22, Anonymous

Hi Everyone,

I signed up in September to thank Brenda (Brenda-you and Kevin continue to inspire me and others!), but this is my first post about myself.

I have been stage IV since Sep 2011 (more details on my profile). I had a craniotomy in November to remove a brain met and just received the good news that I am still NED...MRI and CT came back clean.

I have visited this site often and would like to thank everyone for their contibutions and honesty. I always say to myself, "We are fighting cancer-it's not supposed to be easy," and this website often helps in the fight.

To the people out there who are new here I would like to offer some unsolicited advice that has helped me:
1-Go to an oncologist who specializes in melanoma.
2-Go to an oncologist who specializes in melanoma.
3-Reread 1 and 2.
4-Be careful with this website. I have learned to use it for inspiration. It has helped me through some tough days, but some days the scary stories make things worse (just my opinion-I realize we are all doing what we can and the scary stories are inevitable).
5-Check out the posts of CharlieS. His story (and his grin!!) will make you smile.

Good luck and God bless.
Brendan

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jtheisen29's picture
Replies 2
Last reply 1/19/2013 - 6:47pm
Replies by: Tina D, JakeinNY

 

Hi Everyone, 

 

I don't normally post here but do try everytime my twin sister has her scans for all those melanoma warriors searching for other stories like I did so many times. My sister was diagnosed with stage 3b while 5 months pregnant. She opted to do the 1 month high dose interferon and then the 1 year low dose. Fast forward 3 and a half years she has a beautiful little boy and is fully enjoying life. She just got scan results and she continues to show no evidence of disease. This forum has been such a help when I was helping her after diagnosis and still continues to be while keeping updated on the current treatments that are available. God Bless you all!

 

Jessica 

Former caregiver to twin sister with stage 3b melanoma

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/18/2013 - 9:48pm
Replies by: Ranisa, Anonymous, Cate, Angela C

Hello to everyone out there. I'm hoping someone can refer me to a melanoma specialist in IL preferably Chicago area. I have heard of a few names and di some research (Dr. Jon Richards came highly recommened) as well as some other from University of Chicago, Rush, and Loyola. Any experiences out there or suggestions?

 

Thanks

 

JB

Let's work for better treatments....for a cure!!!!

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Phase III Randomized Clinical Trial Comparing Tremelimumab With Standard-of-Care Chemotherapy in Patients With Advanced Melanoma

 

J Clin Oncol. 2013 Jan 7;[Epub Ahead of Print], A Ribas, R Kefford, MA Marshall, et al

 

TAKE-HOME MESSAGE

Tremelimumab failed to offer an overall survival advantage as first-line treatment of metastatic melanoma, but its longer duration of response may prove beneficial in a subgroup of patients.

Ipilumumab (IPI), a monoclonal antibody that blocks the immunoinhibitory function of CTLA-4, causes a reaction akin to taking the foot off the brake of a car and allowing the immune system to move forward in immune recognition and attack of melanoma cells. Randomized phase III trials of IPI demonstrated a survival advantage and the agent is approved in advanced, metastatic melanoma. A similar antibody, tremelimumab (TREME) was investigated in a phase Iii trial against standard of care chemotherapy, and is reported by Ribas in the Journal of Clinical Oncology online. This study failed to achieve a statistically significant survival endpoint for the antibody although there was a trend favoring the biological.

What are we to make of this seemingly disparate results? In the TREME trial, some patients in the control arm crossed over to receive IPI when that became commercially available in the US, likely improving the outcome for the control group. TREME was fairly toxic, and it is possible that better toxicity management would have allowed more patients to stay on study, receive more therapy, and result in fewer toxic deaths and withdrawals for toxicity. Schedule difference and patient entry criteria could certainly have also played a role. This negative trial should not dampen the enthusiasm for immunotherapy of melanoma but reminds us how careful we must be in designing, enrolling and managing patients in a study evaluating an agent with novel mechanisms of action and toxicity.

SUMMARY
OncologySTAT Editorial Team

Tremelimumab, a cytotoxic T-lymphocyte–associated antigen 4–blocking monoclonal antibody, has induced durable objective tumor responses in a subgroup of patients with advanced melanoma in early phase I/II trials. Ribas and colleagues conducted a phase III study to compare this novel agent with standard-of-care chemotherapy.

At 114 sites in 24 countries, 655 patients with treatment-naïve, unresectable, stage IIIc or IV melanoma participated in this study; 95% had stage IV disease. They were randomly assigned to receive treatment with tremelimumab or standard-of-care chemotherapy (dacarbazine or temozolomide). Of the 328 patients assigned to treatment with tremelimumab, 40 completed treatment; of the 327 patients assigned to treatment with chemotherapy, 33 completed treatment (22 with dacarbazine and 11 with temozolomide).

Based on an intent-to-treat analysis, the median overall survival for patients treated with tremelimumab was 12.6 months (95% CI, 10.8–14.3), compared with 10.7 months for those treated with chemotherapy (95% CI, 9.4–12.0; HR, 0.88; P = .127). Survival rates at 2 and 3 years were 26.4% (95% CI, 22.0%–31.7%) and 20.7% (95% CI, 16.7%–25.6%), respectively, for patients on tremelimumab, vs 22.7% (95% CI, 18.5%–27.8%) and 17.0% (95% CI, 13.3%–21.7%), respectively, for patients on chemotherapy.

Based on investigator assessment, the objective response rates were similar in both study groups: 10.7% in the tremelimumab arm and 9.8% in the chemotherapy arm. In addition, there were no major differences between the treatments in terms of the rate of complete or partial response. Defined as the time from random assignment to disease progression or death for objective responders, the median response duration was significantly longer among tremelimumab responders than chemotherapy responders (35.8 months vs 13.7 months; P = .0011). The probability of progression-free survival at 6 months was similar in the two treatment arms as well.

The most common adverse events related to the use of tremelimumab were gastrointestinal events (eg, diarrhea), dermatologic events (eg, pruritus and rash), and fatigue. The only grade ≥ 3 events reported in at least 10% of patients were diarrhea (14%) in the tremelimumab arm and neutropenia (10%) in the chemotherapy arm. Patients treated with tremelimumab experienced more cases of rash than did those treated with chemotherapy. Although most patients who discontinued treatment in either group did so because of disease progression, 43 patients stopped taking tremelimumab and 10 patients stopped taking chemotherapy because of adverse events. Finally, 7 deaths in the tremelimumab group and 1 death in the chemotherapy group were considered to be related to treatment.

Based on their study results, Ribas and colleagues concluded that tremelimumab failed to demonstrate a statistically significant overall survival advantage over standard chemotherapy in the first-line treatment of patients with metastatic melanoma. The duration of response was significantly longer after tremelimumab treatment than chemotherapy, although the rate of objective tumor response was similar with both treatments. The investigators believe that the durable responses seen in this trial confirm that tremelimumab may ultimately be of benefit to a subgroup of these patients.

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I was diagnosed with Melanoma on January 9, 2013. I found a swollen spot in my neck, surgeon thought it was a cyst, but when he went into to remove it realized it was a lymph node. 5 days later I was told it was Melanoma. I have since had a PET scan, no primary was found - only one other node lit up on the scan very close to the original node. I am currently scheduled for a dissection of the nodes in my neck on Monday, January 21.

After reading this board I am wondering if I am jumping into the surgery too quickly. I am met with a medical and surgical oncologist, although not ones in a Melanoma center of excellence instead at our local hospital. Anyone have any advice - my first thought was to go through surgery and then with full diagnosis/prognosis get a second opinion from Mayo before staring any other treatments.

Any help, assistance, guidance would be appreciated!

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Yes !!!!'! Yeah !!! Amen !!! Glory be ! Yippee !!!!
Just saw Dr. B and everything was great for "my wonderful Wayne " :-)))

Noooo melanoma in MRI of Brain or PET Scan and all
Blood work looked great !!!
Whew !!!!!!! Alright !!!! Exhale !!!!!

All praise to God we give !!!

Warrior Wayne and Nancy - dancing a JIG !!!! -)))
Dance with us ????? :-)))

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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NYKaren's picture
Replies 1
Last reply 1/18/2013 - 1:55pm
Replies by: awillett1991

As many of you know, I've been on Zel for about a month now with few side-effects...SCC removed from back of knee, lots of skin tags around my eyes, some joint pain & very slight neurapathy.  I do take Benfotaime(sp??) 500  mg/day,  so perhaps the neurapathy & fatigue would have been worse.

Anyway, past few days, my right elbow has been swollen and painful to even extend arm.  Celebrex (which I had been on for the slight-medium joint pain)  or Alleve alone didn't work, Dilaudid 4mg did absolutely nothing, so Onc. started me on 5 mg. pred/day.  Yesterday (first day)  I stupidly took 10 mg in the a.m. because I forgot the pills I had were 10 mg & didn't break in half plus 2 Alleve morning & night. (pred was and is only 5 mg. in the a.m.)

This morning I woke up depressed (no surprise there) and pain was finaly a little better, and I took the 5 mg. and 2 Alleve.  BTW, I am on nexium 40 mg 2x/day.  A little nauseous, which is a good thing because I've been eating like there's no tomorrow before the Pred.  No nausea on the Zel.

I did take much larger doses of Pred when I had colitis from ipi, then hydrocortosine when I had adrenal insufficiency from the Pred! 

SO, I am interested in hearing others' experiences/dosages w/Zel and Pred.  if it's not for public consumption but you're willing to share, please message me.

THANK YOU VERY MUCH!

Karen

Don't Stop Believing

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