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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Replies by: JerryfromFauq

http://www.multivu.com/mnr/57608-bayer-regorafeni
Bayer’s Stivarga® (regorafenib) Tablets Approved by U.S. FDA for Treatment of Metastatic Colorectal Cancer

Wayne, NJ, and South San Francisco, CA, September 27, 2012 /PRNewswire/ — Bayer HealthCare and Onyx Pharmaceuticals, Inc. (NASDAQ: ONXX) announced today that the U.S. Food and Drug Administration (FDA) approved Bayer’s Stivarga® (regorafenib) tablets for the treatment of patients with metastatic colorectal cancer (mCRC) who have been previously treated with currently available therapies (including fluoropyrimidine–, oxaliplatin– and irinotecan–based chemotherapy, an anti-VEGF therapy, and, if KRAS wild type, an anti-EGFR therapy).1 The approval of Stivarga is based on results from the pivotal Phase III study (CORRECT) that demonstrated improvement in overall survival (OS) and progression-free survival (PFS) compared to placebo in patients with mCRC whose disease had progressed after approved standard therapies.2, 3

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

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aldakota22's picture
Replies 12
Last reply 10/29/2012 - 7:23pm

Had my 2 month checkup with Dr. Anna Pavalick at NYU Clinical Cancer Center.Very Happy news.As for scans that were done Aug.22 the conclusion is that "Z" is doing its job.There is only a trace of the disease.About 1% detected.Next visit is not till Dec.19.with scans not till late Feb.2013.I have been on full doseage of "Z" 13 1/2   months.I now can go forward wiyh wellness physical checking my choletersol.prostate exam and colonostophy.When originally diagnosed with stage 4 in late Feb.2011 primary doc did not even worry about any other  health issues.Now Dr.Pavalick insist on the phyiscal.We can beat this beast.Too those others who are fighting this disease and offer support it iis the greatest feeling knowing that i am not fighting this alone.Love the support from the cheer leaders who offer words of kindness .support and prayers,Thank God for all the loving family and freinds I have to fall back on in this time of need.  Al

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KMT2003's picture
Replies 6
Last reply 11/8/2012 - 9:34pm

August 23rd I went for scans and found that I had new areas of concern in my bones in the lumbar area of my back. We started doing many biopsies which kept coming back inconclusive for melanoma. In the meantime, I noticed a lump in my breast that concerned me as well. I had a set back with getting that tested at first too but it did finally come back as melanoma in October... We were discussing Z or trials combining Z with other drugs and doing scans when things kept getting worse for me. I had been dealing with back pain for several months and not being able to do normal things like getting dressed, walking without pain etc. October 16th I was admitted to the hospital after doing on ultrasound for a very swollen and painful leg. I had a blood clot... My doctor was also a little concerned that I could have had a clot in my lungs too because I couldn't talk in complete sentences. However, we did not find any after doing tests so that was great news. I had just gotten my first shipment of Z in the mail that day so we took it to Tampa with us. Our goal for me to be discharged was to get the pain under control from the tumors and my calcium levels in my blood were too high... I was there for about 5 days. My doctor and I decided it was best to skip the trials and start the Z right away. I have been taking it now for about 8 days and am feeling much better than I have in the past few months... No side effects yet but I am wondering when and if they will start??? I am having to still rest my leg due the the clot. I am taking fragmin injections every night before bed plus a variety of other pills along with daily blood work to keep an eye on my calcium levels. I am just glad that am starting to feel better after a long frustrating few months. I hope to be on the road to recovery and share my success with anyone else fighting this nasty beast. Stay positive and aggressive with the doctors! If my husband wasn't as aggressive these last few months I feel we would still be dealing with speed bumps instead of treating this...

Kelly

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Jls377's picture
Replies 3
Last reply 11/19/2012 - 11:26pm
Replies by: Jls377, Mandi0280, Valentine

I am looking for any bit of guidance and am so grateful for any responses. My cousin was diagnosed with stage 3C Nodular Melanoma a month ago. He went to his primary to have an infected mole on his neck looked at as was misdiagnosed for about a month and a half before the primary burned off the area and had it biopsied. A lot of time was wasted. He had surgery on his neck to remove the tumor and verify that lymphnodes in the area had been impacted. He then had a second neck surgery to remove a second tumor that appeared after the first surgery. The surgeon said that he wanted to hold off on doing a neck dissection because he may need to go back in with several more surgeries to removed new tumors as they sprout up. They are suggesting a series of radiation for several months. Overall the doctors have been less that optimistic and seem to be taking the attitude that it is so aggressive that they need to treat as it evolves. This includes radiation and then regular ultrasounds/pet scans to catch any new tumors and then they would do additional surgeries. I am really looking to hear feedback on any successful treatments people have experienced. Also what ones to steer clear of. There is also a thermotheapy that has come up as an option. The doctors have told him that he is too far along in the staging to do many of the cancer trials or chemo. Any feedback would be so helpful! Positive stories would be uplifting!. I am open to hearing about any and all treatment options including more holistic approaches. Thank you for taking the time to hear our story.

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Richard_K's picture
Replies 10
Last reply 11/6/2012 - 2:22pm

 

The good news - Yesterday I got the results from my last scans.  Everything is stable, no change, and I’m thrilled to have completed 32 months on Zelboraf.

The not so good news - For the second time in a row, my bilirubin is high and I am on another one week holiday.  Assuming the bilirubin returns to normal with a retest next week I will restart Zelboraf but probably at 720mg twice per day.

I’m looking forward to breaking that 3 year mark and I hope bilirubin cooperates.

Dick

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Tina D's picture
Replies 9
Last reply 10/26/2012 - 9:46pm

I have been back on Zelboraf for a few weeks now and my eyes have been somewhat bloodshot for the past few days and my vision is not as clear as usual. I intend to see an eye Dr if it doesnt clear up, but was wondering if anyone else has experienced this? I can still see to read, and such, but it is slightly blurry and my eyes are burning a little. None of it is terrible... but it is noticable.

Thanks!

Tina

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/25/2012 - 12:25pm
Replies by: Janner, Webbie73, Anonymous

Janner, someone like you that is/was Stage I many years ago, do you say "I have melanoma" or "I had melanoma" or "remission" or "NED" or "cured", etc...? How do you describe/explain it? I often get stuck when speaking trying to figure out what I really mean & what is accurate. . I have melanoma, I had melanoma, etc...?   I know in the big scheme of things this is relatively unimportant, but just wondering

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himynameiskevin's picture
Replies 10
Last reply 10/24/2012 - 9:14pm

hiMyNameIsBrenda and im kevin's wife.

I wanted to write to you all and share a moment of love that i had recently. Most of you know kevin went home to the angels on 9/30. Well, i've been like a roller coaster lately with my emotions, and about two days ago i broke down. I was lying on my side in our bed staring at a picture of kevin. All the typical questions were running through my mind, "why didnt treatment work?" "How am i supposed to live life with out you", and i found myself apologizing to him, because he was strong during the two years he dealt with this disease, and if he could be strong then i could be strong too. I kept asking him if his spirit  was still with me even though i couldnt physically see him. and then the most wonderful thing happened.

I gave kevin a dream catcher some time ago to help with his nightmares. I have it hanging from the fan. The fan wasnt on and the one window in our bedroom is boarded up. But the dream catcher was spinning uncontrollably, as i stared at it, it came to a slow stop. And i knew, he was answering my question. He is still with me and always will be.

Was it him? who know for sure. but i choose to believe it was a love sign from him to me.

So i decided to share this story because this disease is cruel and has taken many of our loved ones, and although it takes their physical body it doesnt take their spirit. Kevin is still here, and he showed me that day.

I also want to sharer a song with you all. Kevin had a favorite band called WHY? and he had a special relationship with them, so much that they wrote a song about him. That was the kind of influential person kevin was, to have a famous music group write a song about him, well he was just lucky that way, so here it is....just copy and paste this          http://vimeo.com/49735160

i just want to remind all of you that there is always HOPE. and everything will always be okay. love your loved ones unconditionally and remind yourselves that you are STRONG, can and will get through this. I know at times you'll feel lost, but nothing is ever really lost, and you'll find your way soon enough...

with that, i send you all love and healing vibes.

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Jamietk's picture
Replies 1
Last reply 10/24/2012 - 9:22am
Replies by: Linny

7 year checkup at MDA in Houston went well. So well that they said coming back in the future is optional. I'm officially NED a little over 7 years from Stage IIA. They are comfortable with me having annual checkups at home w/ my Derm now if I am, but are happy to have me there if I prefer. They did say that my Derm won't do chest xray or bloodwork, but also told me that recent studies/research may soon change protocol so that they also do not do chest xray or bloodwork for stage II anyway. So all in all, a happy day. I love MDA and believe they saved my life. But it feels good to be told they are ok if I don't come back!!  Never been so happy to be told to go away.   Now............gotta address some heart issues. Might be getting a stint or bypass soon (i'm only 41). But 7 years ago I was afraid I wouldn't be here this long, so what's a little heart repair?  I spent many years of anxiety with melanoma, testing, and questionable spots in my liver, lungs, and breast. It feels good to be past the anxiety of melanoma on a daily basis. I still respect it. But I don't fear it. And it put many things in my life in perspective, such as heart surgery. It's just another bump in the road.

 

Hope this gives everyone encouragement, especially those stage I and stage II survivors. I wish you all many years of health and happiness and abundant prayers, and I'll be back next year with another thumbs up. God bless everyone on this board.

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i just came home from seeing my Oncologist .  The test are in, and i am still neg for for Melanoma Cancer.  I still give God the praise and glory for the good report.  It has been a very long year, and I don't have to go back for blood work, or test until April of 2013.  My choice after much prayer was to not do chemo which was recommended.  But I decided to stay the course and go for test which I have done this past year.  So I would like to encourage you to keep your head held high and lead on a loving God.

 

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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kevin2012's picture
Replies 6
Last reply 10/31/2012 - 6:23pm

Hello Everyone,

My wife is 19 weeks pregnant with our first child and diagnosed with melanoma last Tuesday.  It has been a very difficult time for mostly me - she has rock solid and positive as always.  Back in August my wife finally went to a GP to have the mole looked at - about the size of a quarter then and noticable bumpy.  The GP scheduled her for a biopsy mid-September with a plastic surgeon, and then last week he called my wife while I was at work, told her she had a type of skin cancer, referred her to a nose-ear-throat doctor for last Friday, assured her she "wasn't going to die or anything" and told her to call the nose-ear-throat doc to get the details.  She called the NET office right away, but they did not have any paperwork yet so we waited until Friday to be told that it was "a very bad kind" of melanoma.  Having very limited knowledge of what questions to ask (what stage?!!), we left the office in tears only to be referred to another NET doctor this Thursday (had to cancel our first ultrasound appt :( ) at a major cancer hospital in Toronto.  I have been learning more and more about this disease in the last couple weeks, from the thickness and size I can guess that her melanoma is stage II but there hasn't been any node testing to find out if this has metastasized.  I am deathly scared and feel that this is not moving fast enough - I have noticed the melanoma grow even since the Sept 18th biopsy.

My wife is wonderfully optimistic about the whole ordeal, but I just want to get the excision done - enough "consultations" already!  Is this the normal process?  Is there anyone I should be contacting?

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awillett1991's picture
Replies 9
Last reply 12/18/2012 - 1:08am

Literally JUST finishing my 2nd dose of IPI and got scheduled for a brain MRI Thursday and extra labs to check pituitary due to extremely low (.03)!! TSH and very minor headache. Cortisol and Total T4 are completely normal. My doc actually called my labs"wacky". Talking about steroids again although I just got off these for stopping Zel. Can anyone shed any light on this? If you have pituitary problems and need steroids can you continue on Yervoy??

Thanks!!

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Jydnew's picture
Replies 7
Last reply 12/21/2012 - 8:54am
Replies by: POW, Snickers60, tuneseo, clientcommon, jupeter41, Anonymous

After receiving the DTaP vaccine last June, my husband got very sick - mild head cold, but extreme fatigue (like, can't get out of bed for 20 hours a day) for 12 days, until he got on an antibiotic and flonase and whatever it was got kicked by day 14.  He had his semi-annual oncology appointment in August and bloodwork was fine - first year with no scans.  In late September, the whole family had a very mild cold (we have 2 little girls), and he was completely laid up again with the debilitating fatigue.  This time, he go the antibiotic at day 4 and kicked it by day 7, but is still a little touch and go - still a bit tired, but who can tell if that's normal from having a 7 month old and a 3 year old...

Anyway, his doctor wants him to go to a rheumatologist because she thinks it's an immune problem.  He saw an ENT today and is being tested for mono, but even if it is mono, recurrent mono is an immune issue, so... does this warrent a call to the oncologist?  I don't know what for, but I think immune deficiency, and it scares me.

He's 10.5 years NED, stage iiia.

 

Thanks,

Wendy

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jaredmiller16's picture
Replies 5
Last reply 12/18/2012 - 1:15am
Replies by: tuneseo, clientcommon, jupeter41, Anonymous

I am in Afghanistan right now, otherwise, I would have just asked my doctor, which I intend to when I get back in a few months.

I had a mole on my cheek. Although I have several questionable moles, this one was never in question. Just there.

I noticed it has raised a week ago and sure enough, it looked like there was a pimple in it. 100% sure it was a pimple.

Regretfully, I had a meeting with a General that day and did not want to have this massive pimple type mole thing on my cheek, so I popped it.

However, its been a week, the scab feel off and the mole is not even threre anymore.

How bad did I screw things up?

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NYKaren's picture
Replies 6
Last reply 12/18/2012 - 1:13am
Replies by: tuneseo, clientcommon, jupeter41, NYKaren, Anonymous

Hi all,

As most of you know, I just began a trial at Rockefeller University Hospital.  It is a trial of a topical drug called DPCP; if you Google DPCP + Melanoma + Australia, you will see that the drug has had good results in Australian trials. 

They are looking for about 10-12 more recruits.  The team came highly recommended by my docs at Sloan Kettering.  The trial # for ClinicalTrials.gov is NCT01711684.

I went this morning for "Day 0 Visit".  They took 2 biopsies, one each of a mel met and of healthy skin on my leg.  Also did ultrasound, etc.  They put sensitizing doses of the drug on a few places, now I get to watch and wait and hope for a reaction in 14 days.  Yup, hoping for a rash!

I hope this is of help to someone(s).

All the best,

karen

Don't Stop Believing

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