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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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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Now, I have never before considered myself a quitter. My life has taken me in many directions where I’ve had to pick myself up and move along because nobody else was going to do the work for me. I am demanding, so I’ve been told… sometimes hard to work with, and most of the time a perfectionist. These are qualities that drive my husband crazy while we work together. These qualities especially show up during the times we work on our home together remodeling on this project or that. “It’s the big picture that really matters most”, he constantly reminds me.

My husband, Bob, just spent 5 days in the hospital again last week due to a leg infection. Since his surgery on July 22nd to take out the melanoma tumor and all surrounding lymph nodes (18 that tested negated), the drain tube for lymphatic fluid in his leg was moved and replaced 3 times. His doctor tried to let Bob’s lymphatic system dry up on it’s own but it was not cooperating and infection set in finally. Since the lymphatic fluid did not slow down and infection was now happening more surgery was decided to end the problem thus sending Bob home 5 days later with an “open wound”.

Nurse Ratched (that’s me, Bob’s funny nickname for me from One Flew Over The Cuckoo’s Nest) was not very happy and demoted herself to “Candy Striper”. The reason? “Gauze Packing For An Open Wound”, it has lots of history so “they” say… My stomach started to turn.

Gauze packing for an open wound deep enough to see into the crater the doctor had made into my husband’s leg was just was enough to make me question my role as his caretaker. I never wanted to be a nurse and who signed me up anyway? Well, this was a volunteer position, right? I can’t be fired, right? Ok… that was a whine, I admit it. I’m so sorry, Bob. He has been the greatest patient I could ever ask for, really. All I’ve done so far is fetch, reach places he couldn’t and make sure he takes extra care of himself. But this was a definite line I was drawing. I couldn’t go near him and look at this wound in his leg as he tended to his cleaning of it morning and night, no stomach for it… sorry. Maybe if his life depended on it, really? But worry about him, I do. Love him, most definitely. Proud of him, overwhelmingly. In the last 6 weeks this warrior has faced challenges new to him just as I have, with heart and courage. We are going through this together, never alone.

Not everyone is a hero.

 

If you would like to leave Bob a message please send one here:

bob.rogers2010@gmail.com

 

If you would like to follow our family blog page please go here:

http://redesign08.blogspot.com/

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Anonymous's picture
Replies 1
Last reply 9/7/2010 - 4:24am

Hi ALL,

I have a friend that needs to make a decision on picking systemic treatment. She is stage 3c & has tumors in her thigh. Primary was in her bottom leg-2006

She was given 2 options Braf or IPI.

She thinks that Braf seems to be easier side effects than IPI side effects. Any feedback on side effects??

If you get a response & tumor shrinkage or eventually a NED status while on Braf, do you still have to continue taking the Braf pill for life???

Any feedback on IPI would be appreciated??

Thank you so much for taking the time to comment on this post.

 

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Nancy's picture
Replies 2
Last reply 9/6/2010 - 8:34pm

Buddy fell, went to ER and now is in a rehabilation center.  Scans done in the ER shows swelling in the brain.  They put him on 4mg of steroids around the clock.  He was scheduled for IPI last Tuesday (3rd treatment)  He was on the road to Philly, when they called to say he couldn't have the 3rd dose, as he was on high dose of steroids.  Dr. Sharfman said he should taper off the steroids very slowly.   Its the holiday weekend, so I assume on Tuesday, as he stated, Buddy's dosage will be 1 - 4mg in AM, 4mg in PM and 2mg at bedtime.  He has to be on 2 doses before he can continue with the IPI - His next treatment of IPI will be Sept 21 - if he can stay stable with a low dose steroids.  He cannot make up losing the 3rd dose.  It is amazing just how well he is doing on the steroids.  He went from not being able to sit up on a chair to now getting in wheelchair by himself, using the bathroom, can almost dress himself, gets a little unbalanced with ong pants, and pulling the long socks up...but he can work on that.  The rebah center now has him starting to use the walker, and trying the steps.  I get to take him to orchard for 4 hours a day, which he enjoys. 

Can you tell me how long can one stay on steroids?

If he goes off the steroids, will he most likely be so unbalanced as to fall again?

The doctor has said IPI was his only chance, so I fail to understand why he's not given the IPI even if he's on steroids as its a compassionate drug and hes already started on it..

Is there anyone I could contact except for the clinical nurse and the doctor at Philly to try to get IPI for Buddy?

Buddy did well on IPI, some fatigue, but that may also have been fatigue leftovers from the brain radiation and surgery..

Thanks everyone -

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ErikaHouston2's picture
Replies 1
Last reply 9/4/2010 - 11:31pm
Replies by: lhaley

High level summary - I am stage IA - Diagnosed in Oct '08 .65mm clark level II/III. I am 31 married with a 2 yo and a 4 month old.

Fast forward to late July 2010 - pass out, wake up to massive unexplained GI bleeding (no history whatsoever of issues), taken to ER in ambulance, admitted to ICU. Required blood transfusion (4 units).   Every test imagineable is run on me while staying in the hospital for four days (CT Scan, wireless capsule encoscopy, EGD, two (yes two!) colonoscopies, small bowel xray, and two nuclear imaging tests. Nothing is found to explain bleeding and no new bleeding so I am sent home with a watch and wait approach and told to follow up in a month with GI Dr. that followed me in hospital.  

Have all my records from hospital stay sent over to MD Anderson where I am followed. My Dermatologist at MDA discusses case with Melanoma Oncologist who recommends PET CT scan.

I have PET CT scan 35 days after initial GI bleeding.

Impression from PET CT is:

1. No definite evidence of melanoma metastases.
2. There is uptake seen within the loops of small bowel in the pelvis which could be due to recent history of GI bleeding. This can be followed on subsequent exams.

The Melanoma oncologist recommended doing another PET CT in one month.

Any thoughts on the impression? Should I be worried?

Unfortunately since my main Dr. at MDA is a Dermatologist she is playing the messenger and I feel like I am really in limbo and not getting a good read on if they are just being extremely cautious or if this is something I should be more concerned about.

 

 

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Kevin from Atlanta's picture
Replies 5
Last reply 9/5/2010 - 11:03pm

Next week I get my scans after doing four treatments of Ipi.

If someone is severly allergic to leukine, who they be able to do IL-2?

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Sharyn's picture
Replies 6
Last reply 9/6/2010 - 8:44pm

Hi Ipi patients

I will be starting Ipi in a couple of weeks. Just wondering whether side effects are immediate, or do they show up after a week, month? I'm asking because Jim and I are considering a little vacation after I start Ipi, but if I'm going to be sick, we'll forego those plans. Thanks. BTW, I got my staples, stitches and drain out from the mastectomy, and I'm doing really well! I even have a temporary "falsey" to use until I get my prosthetic breast in 4 more weeks. At least it's better than the 4 pairs of socks I had stuffed into my bra! LOL!!!

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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AndyD's picture
Replies 7
Last reply 9/6/2010 - 6:49am

I've had 4 ipi treatments now and I feel so tired like gravity is 10x stronger than it should be. =] Is it this the cancer, the ipi, or my glands out of whack making me tired? If you're on ipi, do you feel way more tired than normal? Will I have normal energy levels in the future?

hope to hear your thoughts

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