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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Sharyn's picture
Replies 1
Last reply 9/9/2010 - 6:28am
Replies by: Linda/Kentucky

Hi everyone,

First of all, I've recovered well from the mastectomy. Stitches and staples came out last Thurs, and the drain came out on Sat. I'm still in bandages, but that's no big deal. I'm out and about as usual, going up to the cabin on weekends, and riding the quad. I have to wait a few more weeks for my prosthetic breast, but in the meantime, I have an insert for my bra, compliments of my friend Linda at the Home Health Care store. I asked her if she had anything better than the 4 pairs of socks I had stuffed in my bra, so she fixed me up. LOL!! 

Anyway, all my plans are in place for the Ipilimumab treatment. Jim and I are heading to Montreal on Monday evening (13th). I have bloodwork, EKG, CT scan and appointment with Dr Mihalcioiu on Tues, Orientation for treatment on Wed morning, then we head home that evening. 

Back up again for the actual treatment on the 23rd -- fly up on the 22nd, treatment on the 23rd, then home that evening. The treatment is given via IV for 90 minutes. I have to go back every 3 weeks for 12 weeks, then we stop for scans and see how I'm responding, and go from there -- either another 12 week run, or maintenance of one treatment every 3 months.

No need to respond. Just wanted to update you. BTW, our vacation plans fell by the wayside. Things got too busy at work for Jim, so all he can take off are the few days he's in Montreal with me. Bummer! :>(

Hugs

Sharyn

Stage IV
 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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Linda J's picture
Replies 2
Last reply 9/10/2010 - 3:11pm
Replies by: bill58

It is only day three and I already have lots of inflammation from the radiation.  Because they are doing radiation first before surgery, I already had lots of swollenness around the tumor on my butt.  But now that the radiation has started, the groin area has flared up and it is only day three.  What is going on with my body?  Am I going to be in crazy inflammed pain by the end of the 5 weeks?  I wonder if my lymph system is backed up because of the exisiting cancer and is having a harder time now with the radiation.  I'm hoping the swelling goes down because the whole purpose of the radiation first is to lessen the surface area that they will have to cut out.  As it stands now, if they cut out all the red, I would be losing an entire butt-cheek!!!!

Any thoughts?

Linda J

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Mom of 3's picture
Replies 3
Last reply 9/8/2010 - 8:03pm
Replies by: msue5, washoegal, Jackie W

I was recently diagnosed with Clark's Stage IV melanoma.  I went n for just a check up and chose to have a mole removed because it was ugly.  The doc said it didn't look suspicious, but he would send it off anyway.  Low and behold, it came back melanoma.  I have had a chest x-ray done and blood work and everything came back normal.  I am going to UVA Cancer center because they said my margins weren't clear that there was still some situ left and that they would also do a mapping and check my sentinole node.  I am just wondering if anyone else has had similar.  My mole was 1.5 mm and was not ulcerated and also did not regress after removal.  Anyone have any idea what is going to happen next and if some of all of this news is good?  I am only 31 and have three very small children and am scared to death. 

Thanks for anyone who replies!

 

Kimberly

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NancyGM's picture
Replies 5
Last reply 9/8/2010 - 5:17pm
Replies by: Vermont_Donna, NancyGM, washoegal, Anonymous

I have been on Social Security since 2007. My re-evaluation came up a few months ago. I have been working again(part time) for the last year and still recieving disability, medicare and medicaid. I just recieved notice my benefits will cease. Anyone run into this? I was under the understanding that stage IV is considered a condition that makes one eligible- even if one has been NED for an amount of time. I have no insurance and need my medicare to have check ups and scans. Any advice for appeal process? Thanks

NancyGM

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We are building a website for cancer patients to understand chemo drugs and financial impact. We are creating a website dedicated to patients and caregivers that have been recently diagnosed with cancer that will be undergoing chemotherapy. We want to help navigate the patients through chemotherapy drugs, terminology, side effects, and what the financial implications (insurance rules and regulations) are to consider before starting therapy. We will list all chemotherapy drugs currently approved, hot link to glossary with side effects, hot link to resources, and detailed information on Patient Assistance Programs and insurance information. We also include information on the website for oncology nurses to help patients in their clinics. The Pepsi Refresh Project is an exciting opportunity for us. For years now we've been listening closely to healthcare providers and patients share their personal challenges in managing the physical and financial impact of chemotherapy treatments. And we've made it our goal to help patients access critical information about their treatments and financial options in a simple and concise way that will allow them to take more control in the decision making process.

We need your help and your vote to get the word out to EVERYONE about the Pepsi Refresh Project and Chemo101!

 

Join and vote now!

 

http://www.refresheverything.com/chemo101

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For those who don't know our story, Eric is Stage 4 with innumerable tumors in his right leg as well as tumors in his lymph nodes.  He has sub-cutaneous tumors and vascular skin tumors.  He has done High Dose Interferon, Carboplatin, Abraxane, and Avastin, High Dose IL-2, and a dendric cell vaccine.  His cancer progressed all through each of those treatments.  Now he is in between treatment and waiting to begin a Intralymphatic Vaccine treatment on September 20th. 

Eric is so discouraged.  We can see changes in his leg daily.  His vacular tumors are growing so fast and the sub-q tumors and putting pressure on his nerves and in the muscle.  He is been in treatment since February, 2009 and is growing very discouraged.  He wants to call it quits and it scares the hell out of me.  He is in so much pain every day.

Is it selfish of me to talk him out of stopping the treatments?  I just don't know what to do.  I don't want him to give up because I think there may be something out there that will help him and I think it's hopeful that it hasn't spread outside his leg or lymph nodes.

I need advice.  Thank you.  Jill

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Shelly in Switzerland's picture
Replies 7
Last reply 9/7/2010 - 7:45pm

I have been on the Roche B-raf clinical trial now for 12 weeks and yesterday I had scans showing that the tumors were still shrinking!  Yahoo! and Thank you God!    Strange side effects but nothing I can't live with.  My tumors on in the pleura and inoperable to this is awesome news. 

Shelly in SW

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Nebr78's picture
Replies 5
Last reply 9/7/2010 - 4:32pm

I have Melanoma stage 4 , male, 78, heart disease.  I have had my limit of Temodar.  Took a CT scan and lab reported nothing growing. I asked about a particular lymph node and they couldn't answer anything about it.  Dr. contacted lab again and now they said it had grown 30%.  Will never use that lab again.  I have been sitting here for about 2 months and no one is doing anything.  I have changed Dr. once and will not again.  I will not spend my estate searching for help.  I am going for one more Dr. visit and if they have no plan, I will just probably quit going back.  I have said it before and will say it again, Cancer is just too big a business to try to cure someone.  They just seem to not want to treat older patients.  Not much pain, I have lump in front of ear, lymph node by armpit size of golf ball almost. Don't know what the spots in lung and spine are doing.   I take pain pills when pain comes.  I really don't know what is going to happen from now on with no treatment.

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could you please check the off topic bulletin board for some questions about log in problems?

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Anonymous's picture
Anonymous
Replies 0

Anyone heard from Jan....I am soworried about how her husband is doing!

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peacefrog521's picture
Replies 15
Last reply 10/21/2010 - 2:40pm

Im a 35 yr old female who had melanoma removed and i was sent for 6 month and then yearly checkups. Around one year and 3months ago I went to my doctor and showed him a lump where my original tumor was removed. He let it go as scar tissue...told me I was fine and said come back in a year. The lump on my side in that time had doubled and started throwing heat. I went back to my dermatoligist and she biopsied it and my melanoma was back. Went for a PET scan and found out Im in stage IV and it spread to my lungs and in my lymph nodes. I had the mass removed on August 20th of this year. My appointment to just start my clinical trials is Sept 13th JUST FOR THE TESTING!!! Does anyone think that this is too long to wait seeings as this cancer is an aggressive cancer from what ive been reading. I have two beautiful children..and a man in my life that I want to marry and have our little family. I have been thru sooo much from being hit..literally by a moving car...lost my mother after my daughter was born, and she was my best friend..to having a VERY abusive boyfriend ( father of my daughter.)..to getting cancer in 2007 and now its back with vengeance. I really cant catch a break. I am overweight and HATE the sun...yet I mite lose my life over a SUN cancer...I have never been so scared in my whole life...does anyone have any advise on this wait..it grows every 3-6 months but it seems like until im setup in a clinical trial...2 months are gonna go by...its spreading and it seems like no one cares....help!!!!!

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Wendi Lynn's picture
Replies 9
Last reply 9/6/2010 - 9:24pm

Hi Everyone!

I've been lurking for awhile and reading all the great advice and support given.  Seems like this is a great support group and I'm looking forward to being an active part of this community!

I was diagnosed in May after having a mole that I've had my whole life on my cheek biopsied by the dermatologist.  2 weeks later I had the WLE (6/15).  Clear margins after WLE.  2 weeks later I met with the oncologist.  Night before I saw him, I found a lump right at my jaw line.  Pointed it out to the oncologist and was told it was probably nothing.   He sent me to a Head & Neck doctor for the SNB.  A month later I get in to see the new doctor who orders a biopsy on the lump.  A month later I get the biopsy done (9/1).  Still waiting on the results of the biopsy, but I am prepared for the next step.  (Can't even begin to tell you all how frustrated I am with all the waiting, but after reading some posts, the waiting game seems very common!)

I was hoping to hear about other's experience with a neck dissection.  I've searched here and online and really don't find a lot of information.  I suspect that's what's next for me and I want to be prepared with the right questions and expectations.

As for the advice, I'm terribly disappointed with both these doctors that I'm working with now and was wondering if anyone had a reccommendation on locating melanoma specialists.  Not sure what information I can provide except that I'm located near Long Beach, CA. 

Again, can't say thanks enough to everyone for all that I've learned so far. 

Wendi

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glewis923's picture
Replies 5
Last reply 9/7/2010 - 4:06pm

Dear All:  

First i'll ask Sue (skysar) since she seemed to have hit my nail on the head.....also any other of ya'll that have had lung mets and went to MDAnderson.  

1--  After 1 yr. Interferon i finished in mid July.

2-- Had my 3 mth. CT scan at Mayo, JAX,  which showed increased # of lung nodules AND increase in size of 5 or more "micro-nodules" that have been present since my Feb. and/or May CT scan.  Largest noted is still under 1cm -  around 7 mm -  rest are around 5mm.

3-- I'm ready to go to MDA for the best?? advise/treatment.

 

Questions:  

1-- Sue/others- are/were your circumstances simular?

2-- What treatment was recommended?  (besides IPI)

3-- How long after contact does it take to get appt.?? 

4-- I am considering IPI, but wonder if something more "proven" to at least hopefully suppress increased tumor growth- like IL-2 with Tremador thrown in- would perhaps be better for me .....and at least buy time 'till IPI  "easier" to get: ie.- FDA approved we hope around 1st of 2011.

5-- I'm fixn' to be 48 yrs. old and in pretty good health other than probable stage 4 mm now.

 

Any input would be greatly appreciated- especially from those who know more than me-  .....from anyone, and especially people that are/were in same circumstances.  MDA experts like AmyB and others may could give me some good advise!

 

Mayo in JAX said 80-90% sure at this pt. the mutiple spots on lungs are mm.  

 

I think of ALL of you often; feel guilty that i only get on here for questions, but so far my only "big experience" has been I-feron.

 

Love and God Bless EVERYONE! -    Grady.  aka  "ShadyGrady Low Swamps of GA."

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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Dear All:  

First i'll ask Sue (skysar) since she seemed to have hit my nail on the head.....also any other of ya'll that have had lung mets and went to MDAnderson.  

1--  After 1 yr. Interferon i finished in mid July.

2-- Had my 3 mth. CT scan at Mayo, JAX,  which showed increased # of lung nodules AND increase in size of 5 or more "micro-nodules" that have been present since my Feb. and/or May CT scan.  Largest noted is still under 1cm -  around 7 mm -  rest are around 5mm.

3-- I'm ready to go to MDA for the best?? advise/treatment.

 

Questions:  

1-- Sue/others- are/were your circumstances simular?

2-- What treatment was recommended?  (besides IPI)

3-- How long after contact does it take to get appt.?? 

4-- I am considering IPI, but wonder if something more "proven" to at least hopefully suppress increased tumor growth- like IL-2 with Tremador thrown in- would perhaps be better for me .....and at least buy time 'till IPI  "easier" to get: ie.- FDA approved we hope around 1st of 2011.

5-- I'm fixn' to be 48 yrs. old and in pretty good health other than probable stage 4 mm now.

 

Any input would be greatly appreciated- especially from those who know more than me-  .....from anyone, and especially people that are/were in same circumstances.  MDA experts like AmyB and others may could give me some good advise!

 

Mayo in JAX said 80-90% sure at this pt. the mutiple spots on lungs are mm.  

 

I think of ALL of you often; feel guilty that i only get on here for questions, but so far my only "big experience" has been I-feron.

 

Love and God Bless EVERYONE! -    Grady.  aka  "ShadyGrady Low Swamps of GA."

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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skysar's picture
Replies 3
Last reply 9/7/2010 - 12:54am
Replies by: Jim in Denver, lhaley, Fen

Finally I am going to MDA tomorrow for my first treatment.  Anxious as usual.  We are having issues with Blue Cross approving the standard care associated with IPI/Temodar.  They approved the Temodar, however, the doc office visits, scans, bloodwork, infusion have not been approved as of yet.  The total for the year is $128,300.  My husband and I pay $2000 a month for health insurance and it is the cadillac plan.  My deductible is $2500!!  The people at MDA have been great working with us trying to get around the insurance issues.  Dr. Hwu has appealed but no word yet.  Their suggestion was to have all of my pre screening tests requested by my primary onc at Emory, which I did last week.  Just waiting for the results!!!!!  

Glad to get back on the road with this and look forward to keeping up with everyone on this trial.

Sue

Hotlanta

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