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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Steve in Detroit's picture
Replies 8
Last reply 9/16/2011 - 2:11pm
Replies by: Anonymous, JerryfromFauq, jim Breitfeller, chenrydh

The following was posted acidentaly by "kris herrington" in the "off topic" forum and I am re-posting for her. Thank you in advance for any advice for Kris

 

Hello all...

Got a big decision to make...and I'm looking for some advice.  I am stage 4. met in my lungs and abdomen, all over really. I just finished taking the BRAF Plexxicon drug in august, since being off the drug the mets have gone crazy and are increasing rapidly. I am BRAF V600K,  not V600E so they think thats why I may not have responded to the Plexxicon.  I was just rejected at the NIH for the TIL trial. So now my options are to start the MEK trial or start on Yeroy.

The trial doctor doesn't have any stats on the MEK except to tell me that people that did not respond to the Plexxicon did respond to the MEK, but couldn't tell me much more.

My oncologist tells me to start Yeroy that I need something different than a BRAF drug. I'm concerned about the Yeroy as it is very toxic and that the response rates are so low. I was told today that the overall survival was 2.1 months but that others, less than 10% of the people were out 1-3 years.

If I take the Yeroy now, it basically excludes me from any trials at this time if it doesn't work. All I got left is chemo and we all know this doesn't have great results.

I progressed slightly on the Plexxicon (2011)

Did not respond to IL-2 (2011)

Did not respond to Interferon (2009)

 

Soo I'll take any suggestions, advice, stories.. anything... HELP!!!

 Kris 

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Anonymous's picture
Anonymous
Replies 5
Last reply 9/17/2011 - 10:34pm

Anyone know how VAL is doing?

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TracyLee's picture
Replies 14
Last reply 9/14/2011 - 9:42pm

Hi y'all,

Haven't posted for a little while, because all is quiet on my melanoma front!

Still having a great response to BRAF. Neck node, which was the size of a chicken egg stuck to my neck, is now down to a small bump, about the size of a grape.

I ran into my surgical onc at high school open house. He hasn't seen me for several months, when I was in bad shape. He was SO excited to see my neck so improved! (And isn't it nice just to be doing normal stuff? Meet the teachers, torture our daughters?)  :)

My prayers are with others who are doing well, and for those who aren't. I'm exquisitely aware that things can change fast with melanoma. 

For those who are worn out with worry, I lift you in prayer.

For those who are currently in a good place, I lift you in prayer.

Wishing everyone a peace filled weekend.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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mygirlmaddy's picture
Replies 31
Last reply 10/5/2011 - 10:35am

Once again, we have gotten bad news.  Before we give up and agree to palliative care  (as our oncologist wants), I am turning to all of you for any suggestions.  After nine months of being stable, although not cancer free, my husband's cancer has begun to spread.  It is still not on any organs, but nearly all of the lymph node sites are involved.  He also had a tumor on his wrist that our doctors rushed to have removed as it was eating through his bone.  He has tried IL2, Ipi, is BRAF wildtype and steroid dependent (due to hypofecitis from Ipi use) and too sick to qualify for most clinical trials.  Radiation successfully reduced the size and pain of a few of his tumors, but it's not a cure and his doctor doesn't want to keep radiating him knowing that it won't truly fix the problem.  She wants him to start Temodar to possibly slow the progression.  He is nauseous and vomitting more than he is not.

I don't want him or anyone else, myself included, to feel that we didn't do everything we could.  If anyone has suggestions for something we didn't try, I'd love to hear it.  

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

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renakimu's picture
Replies 6
Last reply 9/12/2011 - 7:17pm

hello everyone!!

once again i have to say that saring with you things is very important for me!now i dont have smth to sare but i have smthg to ask.i have told you that my mum is 3b stage from april from a mole in her back, iwanted to have your personal expeerience with reoccurance, most of all the time that the beast came back...i know that every person is completely different from an other but just wanted to see....i am very thakefull to all of you..

 

best wished and many years of "NED" to all from my heart

DiRena

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Gracie's picture
Replies 3
Last reply 9/10/2011 - 8:38pm
Replies by: King, LynnLuc, lhaley

Yes I have been "lurking" for 14 months at stage 3b but recently progressed to stage 4. 

CT showed new nodule 1.5cm on left under arm chest wall.  Needle biopsy was positive.  Plus a lung nodule grew 6mm in 8 weeks that the pulmonary specialist tried to biopsy in late June but it was too deep and only 9mm at the time (too small) but is now 1.5cm. Still not absolute it is mel.

My melanoma specialist (oncologist) really thinks if I am "going to play ball, I should go for the home run" and try IL2.  I tried to join a trial study involving a surgery arm and the BCG (tuberculosis) treatment injection sponsored by JWCI.  I was rejected due to length of time we "kept an eye" on lung nodule that now has great suspicions to be mel even though we have not done a successful biopsy yet. 

I feel like I just want this mel out of my body right now but wonder if surgery is hasty as it may exclude me from other treatment options even though I am not sure what options there are at this point,

I have been on the ipi/placibo trial for 15 mos. and have not been unblinded yet.

Please share with me any options I could consider and if I should fly somewhere else to get a second opinion.

I feel like I know many of you by following your posts and now that I am in the scary boat, I love you all!

Gracie 

cancer is in my life, but is NOT my life

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justlittleoleme's picture
Replies 10
Last reply 9/26/2011 - 5:58pm

Hi, my hubby was recently rediagnosed with Melanoma. 

His original melanoma was diagnosed on 2/15/05 and he had a wide area excision on 3/29/05 with a sentinel lymph node biopsy.  At that time, no further treatment was recommended and he has been NED since that time.  He was classified as Stage 2A.

His recurrence is at the original location in the parotid.  The tumor is 27mmx26mmx30mm.  They are staging him at Stage 3 prior to surgery.

We are scheduled for a parotidectomy with facial nerve dissection, nerve graft and neck dissection on 9/23/11 at the University of Michigan Ann Arbor.  Our local cancer center (which we have loved) is unable to do the surgery due to the invasive nature.  The oncologist is advocating for just radiation after the surgery.

My question is this:  Should we be looking at further treatments? Clinical Trials?

We have another consult scheduled with Dr. Logan at the IU Simon Cancer Center on 9/19/11.

Thanks for your insight!

We don't know how strong we are until being strong is the only choice we have.

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newmanmark's picture
Replies 8
Last reply 9/10/2011 - 3:49pm

Hello All,

I have had a small lump (pea sized) on the outside of my elbow for quite some time.  I can't remember if it was there before my cancer situtation started.  I was wondering if anyone knows if we have lymph nodes in the elbow region (outside of elbow)  about and inch and a half from the tip of the elbow?  Has anyone had a lymph node swell in this area due to the melanoma?  I know that its not the common regions for lymph node involvement.  I had a complete lymph node disection in both armpits and melanoma was found on both sides.  I am concerned that it could have traveled down my arm.

I don't want to panic but I guess I should go see my onclogist.

Thanks

Mark

 

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JerryfromFauq's picture
Replies 22
Last reply 9/13/2011 - 4:50pm

I have been asked about an update by so many people that I will post here even if this is not a totally melanoma related item.  Life does go on!  Look for the good things and don;t just concentrt on what MIGHT happen.

   My fifthteenth Grandchild (9th Grandson) Has deided to make his arrival.  My daughter said that it was an easy 19 hours (of the 21 hours) of labor.    Uriah Ellis Haessly  arrived at 01:41 am 8/7/2011.  He is 7 lbs 7.8 oz and is 19 1/4 inches long.

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

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deardad's picture
Replies 2
Last reply 9/8/2011 - 10:51pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

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deardad's picture
Replies 4
Last reply 10/1/2011 - 11:38pm

Hi my dad is 10 months down the track after his original diagnosis of stage 3. He had a craniotomy for a single met 5 weeks ago. Now he has 4 mets in liver and one in his spleen. He starts B RAF in a week. A CT scan is organised before he commences the drug but Im wondering why they haven't also arranged an MRI? There is one booked for 2 months after surgery but should we wait this long? My concern is that his original met in the brain doubled in 6 weeks and bleed, and I'm hoping he might be a candidate SRS rather than another craniotomy. What would you do?

Has anyone heard of positive stories with liver mets? My dads cannot be resected apparently. We are living every day like life will end in months and its so heartbreaking. I need some hope.

Nahmi in Melbourne

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/9/2011 - 12:23am

Hello All:

I am writing about my dad who was diagonosed with Melanoma a year ago.  His was very deep and it was taken out with clear margins.  It was recommended that he start on Interferon which he did with many complications and issues and stopped after 6 months.  He has been seeing Dr. Kirkwood in Pittsburgh as an add -on to his oncologist.  I have been in the medical field , one area being with Hospice so I have been extremely involved and with them through this difficult ordeal.  We were just in PIttsburgh where we were told my dad was cancer free for now and the same week received biopsy results from a local surgeon for something that just appeared on top of his head.  It is melanoma within 2 cm of the original site.  He just had the surgery and he now has a 5 inch incision on top of his head. He will return to Pittsburgh when the incision is healed, but wondering about being in a clinical study.  Interferon is not an option as he stopped it in May; Ipi has been mentioned and he is BRAF negative.  At this point in time the pet/ct is clear, but oncologists seem to believe that it is probably other places, but not shown up yet.  He had surgery 2 days ago and goes back to see the surgeon next wk.  Any ideas?  I have learned more about Melanoma than I have ever wanted to know and done so much research.  I am wondering about suggestions about any experts on scalp melanoma specifically and treatments .  They also classified my dad now as a stage 4 and I am confused by that.  At the present time with the tests we have at this time there is no cancer with the exception of the spreading from the original site on his head.  I thought stage 4 would be distant metastasis? At this time he has no lymph node or other organ involvement.  any thoughts would be so helpful! 

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Richard_K's picture
Replies 8
Last reply 9/14/2011 - 9:27am

 

December 1998 – Melanoma left cheek, Clark’s level IV.  Excised, SNB, all is good.

August 2007 – Myoepithelial carcinoma in left parotid gland.  Partial Parotidectomy, all is good.

October 2009 – Stage IV Melanoma in lung.  IL-2 no response, Zelboraf great response.

December 2010 – Squamous-cell carcinoma.  MOHS excision, all is good.

September 8, 2011 – Found out I now have prostate cancer.

The purpose of this post; is anyone aware of a site similar to Melanoma.org but for people with prostate cancer?  Thanks in advance.

Dick

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j.m.l.'s picture
Replies 10
Last reply 3/20/2015 - 8:39pm

I'll be starting on Yervoy next week. I know everyone is different but could you give me some idea of what to expect right after dose 1 and also later on. I am worried about the serious stomach problems.

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Angela C's picture
Replies 11
Last reply 9/17/2011 - 10:12pm
Replies by: JerNYC, Anonymous, Angela C, NYKaren

Hi everyone.

Tuesday was my first dose of Yervoy. Prior to Yervoy, I was on the MDX-1106 trial. While on that trial, I experience sun senstivity and if I didn't cover up real well when going out in the sun, I would break out in a rash. I usually got it on my chest and sometimes on my neck. It usually would go away within a day.

So, Tuesday was my first dose of Yervoy. Yesterday I went on a couple of walks outside. One was 20 min the other was 30. I wore a hat and a long sleeve shirt, but I didn't button the top button of my shirt like I normally do to try and cover the skin on my chest. About an hour after my second walk, I developed quite the rash on my chest. Very red and bumpy. Then as the night continued, it showed up on my neck, behind both of my ears and on the top part of my chest. This morning I woke up and I have tiny little bumps on the skin around my mouth. My chest is less red, but the bumps are itchy today.

Now I'm trying to figure out what caused this. My last dose of the MDX-1106 was six weeks ago. Maybe some of that is still floating around in my system and caused this sun reaction? Or, maybe it's from the Yervoy? Or, maybe it's a combination of reactions from both drugs? The rash on the chest is not something new for me, but I've never had it show up behind my ears or on my face.

I know that a rash with Yervoy is quite common, but could it really show up the day after the first dose??

What do you guys think?

~Angela

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