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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renakimu's picture
Replies 5
Last reply 7/22/2011 - 5:25pm

today we found out tha the nodules were there from the first ct scan and they are exactly the same as before.none can say that they are melanoma or not.is it posible with just a microscopic met at tha sln and without othel lumpnode positivi at the full axillary disection to have a met at lungs?the lung specialist told us that those could be there for years and to be asymptomatic for ever, they just need observation from time to time.the thing  that worrys me is that they are ground glass.....so much anxiety evere time with scans....its horrrible..

cant wat for answers!you are helping me so much!

blessings to everyone

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TracyLee's picture
Replies 16
Last reply 7/22/2011 - 5:21pm

Hi y'all,

I saw my surgical oncologist yesterday. He feels I'm NOT responding to ipi. My neck is very distended and he's quite worried that it has invaded my neck muscle and vascular vein.

I'm jumped to the top of the appointments list and see Dr. Sharfman and possibly Dr. Koch (head/neck surgeon) on Friday. CAT scan today.

I am so upset. Obviously I'll know more Friday, but doc feels I probably need IL2 (UGH) and radiation AND radical neck surgery.

Not in a good place right now, at all.

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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MaryBeth and Jeff's picture
Replies 5
Last reply 7/22/2011 - 2:00pm

My husband's oncologist feels he is a Yervoy non-responder. He received his final Yervoy treatment last week. (He tolerated the treatments very very well). Since his third treatment he has developed many many nodules (sub q's) - on his arms, under his arms, neck, legs and chest. Some are small - pea size, some marble size. A few are even blue...appearing as if it is in his veins....demonstrating what I believe is the vascular nature of Mel. Onc does not want to wait for his 12 week post IPI scan, so he will begin Thalidomide and Temodar next week. http://clinicaltrials.gov/ct2/show/NCT00072163  Onc. feels IL-2 is too dangerous for him because of the brain mets - 19 total - all but one have been treated with Gamma Knife Surgery. - 2 separate surgeries. (the remaining one is to be treated next week). Subsequent MRIs did show the brain lesions have either reduced in size or no change in size.  Onc feels treatment with IL-2 could cause brain Hemorrhage. It "seems" like everything went downhill after his 3rd Yervoy treatment. He now has unbearable pain in his right gluteal area which no pain med can provide relief. He did have an MRI today and if possible we agreed on radiation of the area.  He has recently lost strength in his fingers finding it difficult to button, zippen and type. (This most likely is due to the brain radiation - 10 day regiment of low dose whole brain radiation after 1st Gamma Knife Surgery). We will discuss this with both his radiologist and medical onc. next week. I am just so distraugt at how so much has changed since his diagnosis on March 8, 2011. How over 4 months ago this man both felt and appeared healthy.  Praying that he responds to the T & T . Praying that the nodules are a positive immune reponse as a result of the Yervoy. Praying that he can get some relief from the pain. Praying...

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renakimu's picture
Replies 4
Last reply 7/22/2011 - 8:57am

my mum today took her ct of lungs, it show two lung nodules one 3mm and another 4mm, ground glass.does anyone had a same expirience.can that be melanoma?can that be just a cought?

please responde because i will lost my mind...

thanke you all

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gabsound's picture
Replies 11
Last reply 7/21/2011 - 11:48pm

I have a tentative plan to start biochemo in 7-10 days. I was researching last week about radiation and could swear I read something about an ongoing study with very good results when radiation was used before starting chemo or possibly biochemo.
Does this sound familiar to anyone?
I'm thinking it was being done in the pacific northwest.
If anyone has a source for this could you please post?
I need to get more organized about this searching I do online.
I found out my original tumor was at a Caris lab and us currently being tested for mutations as well as what treatments it may respond to. I'm hoping this cones back soon. It would be nicest have more facts to base treatment decisions on.
Welcome to our new posters.

Hanging in there in las Vegas,
Julie

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chet's picture
Replies 14
Last reply 7/21/2011 - 9:02pm

Hello everyone. It's been a good minute since I've posted anything on here so I thought I would update you on what's  been going on with me. Well, I wasn't really a responder to IL-2 so I started Yervoy in June. I'm the first person to receive it in San Antonio so they're watching me very carefully. I'll be getting my third infusion tomorrow morning. So far, so good. I haven't had any crazy symptoms, just the rash, but that is managable. It comes and goes. I was wondering for the people that were on Yervoy before and responded, about how long did it take to see results? I have no visible melanoma on my skin so I'm not able to monitor my progress. I only have one visible tumor and that's my lymp node right about my left clavicle. I honestly can't tell if it's the same or shrinking. It definately feels a little softer than before but I'm not sure if it's getting smaller. I've been lurking the board and seeing some others are on Yervoy, too. Best of luck to all you guys, y'all are def in my prayers everyday. 

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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arnie and sherry's picture
Replies 4
Last reply 7/21/2011 - 7:55pm
Replies by: arnie and sherry, Anonymous, jim Breitfeller

looking for melanoma doc in san antonio tx , would anyone know of one?

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dodgedh2's picture
Replies 19
Last reply 7/21/2011 - 9:24am

I'm new to this board. I was diagnosed with Stage 4 melanoma (unknown primary) 3 years ago. Following a CT scan for an unrelated ailment, the doctor found a single tumor in my sacrum which was removed surgically and treated with a gamma knife. Since then, I have thankfully been NED. Although I am adjusting to this life changing event, I still worry that it will return. I'd like to hear from others who have survived Stage 4 and especially those who may have experienced recurrance. I'd like to know how long before recurrance, severity when it returned, and generally what I might need to expect. I realize that Stage 4 isn't good and I'm aware of the prognosis, however, I've heard of people who have been Stage 4 for decades and I'd like to hear from more that have similar circumstances.

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ValinMtl's picture
Replies 5
Last reply 7/21/2011 - 8:45am
Replies by: Vermont_Donna, ValinMtl, Anonymous

Hey Donna, haven't seen your name posted recently.  I trust all is well.  Just to let you know that I purchased the solaris tribute garment.  What a blessing...it saves my husband from wrapping my leg daily.  I can put it on myself!  Hopefully, the tumors will shrink and I'll be able to get back into regular 30/40 garment but for now I use the solaris tribute garment almost daily and nightly.  Quite expensive though!!  $1600...thank goodness, hubby's health insurance covers 90% although only up to $50,000 and that has gone down significantly during the past 3 years with all the meds and support hose.  Val xx

Live Laugh Love Nothing is worth more than this day!

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Bruce in NH's picture
Replies 15
Last reply 7/21/2011 - 8:36am

Just thought I would post my latest setback in trying to enter a T-cell targeted therapy clinical trial at NIH. NIH requested CT scans and brain MRI last week. After over 10 years of brain-free mets, I got the surprise of my life. Opinion of radiologist: " Multiple bilateral cerebral hemispheric metastases." Initial count is greater than 10, which exceeds the NIH acceptance criteria by at least 7 (3 or fewer mets with none greater than 1cm. in size). The report is preliminary so there is little to no detail on size but mets appear scattered from front to back primarily on the right side. I have had no headaches or brain fog to alert me to a problem, which makes the diagnosis that much more frustrating.

So I start a new journey into the unknown. I've done some research on brain mets but would appreciate comments from those of you familiar with multiple brain mets, specifically what questions I should ask the radiation oncologist when we meet next week for a consultation. It looks to me like my only option is Whole Brain Radiotherapy (WBRT). If you or your spouse/partner/family have had experience with this treatment, would like to know what to expect in the way of side effects. I'm sure they vary from patient to patient but for now I have to start somewhere. Thanks for sharing your experiences in advance.

Bruce in New Hampshire

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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Laurie from maine's picture
Replies 7
Last reply 7/21/2011 - 7:04am

hi,

I just came back from hospital where I had a tumor removed from intestines which was causing a blockage.  The tumor removed from intestine was melanoma and scans found tumor in my liver and left lung  Brain mri showed all clear there..  I also am having strong pain in my left shoulder pretty constant so they re thinking it is in my bones there.  Met with Dr Lawrence mass general yesterday.  My tumor is being tested for Braf and that is the option he suggests we go if I test positive.   We will discuss what we do if I am not Braf positive, I believe they were leaning to ippilumb(sp?).  My husband and I are trying to absorb all of this. 

I believe Dr Lawrence is one of the best as far as being up on reseach and trials and am feeling that he can help guide us thru this.

any thoughts? I know it is real basic info, my family is currently overwhelmed as my baby sister is in hospital today having double masectomy and we are all trying to surround her and help her thru this, so timing for my melanoma to resurface stinks.

laurie from maine

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jmmm's picture
Replies 3
Last reply 7/20/2011 - 9:46pm
Replies by: ValinMtl, JerryfromFauq, Anonymous

My husband was dx with stage 4 in January.  He had 2 surgeries to remove 2 tumors (sm. bowel and lung).  He has the c-kit marker and was put on Gleevec for 7 weeks.  A follow up scan showed 2 new tumors--one in the small bowel and one near his heart.  His dr. started him on Yervoy.  He completed his 4 doses and just had his 12 week scan.  The GI tumor was completely gone and the heart tumor was "dead" and half the size before treatment.  We were amazed.  Unfortunately, there was some activity in some lymphnodes in his belly--the radiologist believes it to be new tumors--the largest one was 2.4 cm with an uptake value of 5.6.  These tumors were not there before the Yervoy treatment.  The Dr. isn't sure what to think--my husband is the fist patient he's treated with Yervoy.  He thinks it could just be an immune reaction from the Yervoy.  Has anyone heard of a yervoy taking care of tumors, but allowing new tumors to grow??  Or has anyone heard of yervoy causing lymphnodes to appear as new metastisis??  The Dr. wants to rescan in 6 weeks, but we're both nervous waiting.  Any thoughts??

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Gene_S's picture
Replies 3
Last reply 7/20/2011 - 7:07pm
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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RMcLegal's picture
Replies 3
Last reply 7/20/2011 - 4:08pm
Replies by: RMcLegal, washoegal, Anonymous

If you hate melanoma because of how it's affected your life or that of a loved one, please "like" this facebook page.  The more of us who demonstrate our support for sending melanoma packing on the highway to hell, the more likely it is that we can convince corporate sponsors to support great organizations like the Melanoma Research Foundation.

http://www.facebook.com/#!/FriendsofMelanoma

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Anonymous's picture
Replies 15
Last reply 7/20/2011 - 7:03am

Recently diagnosed last month when lump in left groin surfaced. Opted for full groin lymph dissection. PET/CT did not show evidence of disease has spread though area in muscle of left thigh showed concern. Area of left muscle was removed during dissection and surgeon is unable to tell me if area was a prior node or disease spread so on the side of caution this moves me from Stage III to Stage IV in their opinion. Treatment has not been determined as yet - local area is not very aggressive with this type of cancer. I have appointments at Johns Hopkins and Sloan Kettering in the next few weeks. Looking for any suggesstions and/or similar situations and treatments you may have considered. Need to 'flip the switch' to positive thoughts as I am still consumed with fear, the unknown and not being here from my children who are so very young. Thank you for reading and thank you in advance to those that respond - God Bless.

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