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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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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Jill and Eric in Fl's picture
Replies 7
Last reply 9/7/2010 - 9:25pm

Hi sorry I haven't posted in awhile, Eric received 2 doses of Ipi and was itchy and running a fever 10 days after the first dose, after the second dose he was still itchy and the fever came and he had lots of aches and pains, he said his bones hurt like they did after he got the Neupogen(sp?) shot after chemo, I took all these as good signs that he was having an immune response, every time we talked with Dr Weber at Moffitt about these side effects he said it sounds like its from the medicine and not to worry about it. Then on Aug 23rd, 12 days after his 2nd dose, he woke up in the middle of the night in extreme pain, it was so bad he couldn't move and he had a panic attack, so we called the ambulance and he went to the ER. We live over 2 hours from Moffitt so we went to our local hospital where Eric had received treatment before being transferred to Dr Weber at Moffitt. Eric was having lots of gas and bloating and only one episode of diarrhea and then he got constipated from the Imodium. His belly gurgles and rumbles so loud it would wake me up at night. Eric kept saying if he could get rid of the gas and full feeling he thought the pain would go away .The ER did a  full work up, xrays and a ct scan and could not find a reason for the pain, morphine took the pain away and after several hours they sent us home (with no pain meds). They said the lesions in his liver had gotten larger but they were comparing it a scan in May before he was transferred to Moffitt so I wasn't concerned and figured the progression occurred before starting IPI, well after a week of pain and not much relief we were back at the ER on Sun, Dr Weber suggested we start him on oxycodone so home we went again. Eric was scheduled to get his 3rd dose this past Wed. The oxycodone wasn't helping with the pain and he was still unable to move very well, Dr Weber looked at him and admitted him to the hosp. Dr Weber was headed out of town for a conference but he said at least 3 times during the visit Eric didn't need another CT scan, he said he believes it is the liver tumor hitting some nerves and causing such pain and he would have the "pain team" here at Moffitt get the pain under control and he would see him in 3 weeks for a final dose of IPI. He explained that he couldn't get the 3rd dose so he had to skip it but the 4th dose would be in 3 weeks. He said the pain was either tumor destruction (he said that 3 times), tumor progression but a ct wouldn't be able to tell the 2 apart. Anyway we were admitted Wed morning and they set up a morphine pump and Eric's pain level was still 7 or 8 on a scale of 10, the docs decided to do a ct to rule out possible causes even though I told him he just had one 9 days earlier, they ran all kinds of blood tests to find out what caused his temp to rise even though I told them it was probably from the IPI. What upset me was Eric has not eaten in days and after 24 hours in the hosp they hadn't done anything to help the pain, the morphine was no longer working. What set me off was when the intern doc came in after 24 hours and said the attending MIGHT stop in to see him tomorrow, I had to get a little ugly and ask where this pain team was and why were they not helping my husband. The intern doc said the ct didn't show anything except that his liver tumors had grown by a cm or two and the other in his spleen had gotten bigger too, they say his colon has no colitis or inflammation isn't isn't blocked in any way. They said Eric could try to eat solid food, he was so hungry at this point, I got him a yogurt and as soon as he finished his pain level went from a 5 all the way to a 10, he started sweating, got really cold and he was shaking so bad from the pain the whole bed was moving. The nurse saw all this happen yet when she asked the doc to give him more morphine he said no. Well I lost it,I got everyone I could think of involved and within 10 mins the pain team showed up. They explained that he was opium resistant and the morphine isn't working well, anyway they got his morphine level raised and he was back down to a pain level of 5 or 6 and they were going to come up with a plan. I asked the docs if the plan was to just keep him comfortable until he passes away and they were shocked I asked that, they said his bloodwork was all good his LDH  was high but not too bad. I just cant see how I will ever be able to take him home if he is on a morphine pump. Meanwhile his belly still makes these awful sounds and he says the gas makes him feel so full. Anyway to make a longer story a little shorter, the emailed Dr Weber in Belgium and sent him the ct results and Dr Weber, emailed back and said he was taking him off IPI and he would see us when he got back in town to go other other options we might have. Well the attending doc came in this morning and basically said"we are sorry you have progression of disease, Dr Weber is taking you off IPI and there is nothing more we can do" The pain team recommended steroids and they gave him his first dose and he said he felt better, he got his second dose this afternoon and when I got back in town he was sitting up in a chair he was smiling, talking, laughing, almost his old self. My gut feeling is that while the liver tumors  may be hitting a nerve he was having some sort of gastrointestinal issue that the steroids has helped clear up, I still feel like he was having a response to the IPI, he had so many side effects and his eyebrows which we light in color are much  lighter now with a few white hairs but the hair on his head hasn't changed. I just don't understand why he cant get the last dose of IPI and give it a chance to work and why if they know IPI causes tumors to get bigger before shrinking, why he would be taken off. Dr Weber says that if it is tumor destruction it can hurt and he sent us to the hosp for pain management and now we are off the trial, I am confused. Does anyone know if there is a clause in the compassionate use trial that says if they show progression during the 12 weeks that they have to be taken off? Dr Weber acted like he didn't want a ct because he was afraid the tumors would look bigger and maybe he knew that would remove him from the trial, I don't know I am just guessing. Sorry this is so long, I am in a hotel room away from my kids and I am emotionally and physically exhausted. I went home today to work (we own our own business and I can't afford to get behind)and get clothes, we were here 2 days with no extra clothes or anything, my mom stayed with Eric but we can't afford to keep staying in a hotel for too much longer so I think I will send my mom home tomorrow and sleep in the hosp with Eric, ugghhh I am tired here are my questions:

What after IPI? He has a brain met, had radiosurgery and it shows no electrical activity and is shrinking so we assume its dead but I read all these trials say no brain mets. Dr Weber has mentioned BRAF in the past but we haven't been tested for that, what other options are there?

Am I wrong in thinking that maybe just maybe the tumors appear larger on the CT is because the IPI is working and they are "progressing" before they shrink?

Is there anything that stands out to you guys that I or the docs aren't thinking of? I find it amazing that on morphine alone his pain level was still a 5 but now after 2 doses of steroids its a 1 or 2, doesn't sound just like tumor pressing on nerves to me, what else might it be? I have said all along its kinda like colic but the docs didn't buy into that

Wow sorry this is so long, Dr Weber will be back in the country on Sun but considering Mon is a holiday I probably won't see him until later in the week and in the mean time my mind is just spinning. Oh and another thing that kept making me mad was the attending doc, the head lady of the team, kept calling IPI, chemo and was trying to explain that with all chemo there are side effects and this chemo only has a 4% response rate, it just goes to show that even the docs in the same hosp don't know what is going on. Eric kept trying to correct her and explain to her that IPI is an immunotherapy but she still kept calling it chemo, come on Dr Weber get home soon so we can get some answers!!!

Thanks

Jill

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KatyWI's picture
Replies 3
Last reply 9/4/2010 - 9:36pm
Replies by: King, KatyWI, Eileen L

So my 3-month PET wasn't exactly what I wanted - there are three small (4-5 mm), low-SUV (1-2) nodules in various places in my butt.  Could be nothing (e.g., cysts), but with MM...nothing's ever "nothing."  The nurse mentioned one possible outcome would be to have a surgeon remove them.  My doctor's appointment isn't until Thursday, but of course I want to go in armed with as much info as possible.  So here's the question:  two of the nodules are too deep to feel (one is 1 cm beneath the skin, and another is deeper still).  I can't feel these two.  How would a surgeon even find them to take out?  And what exactly would the surgeon take out?  My two previous subQs have been near the skin surface on my back and they were removed in a procedure analagous to a WLE, including an ellipse of surface skin.  That doesn't make sense to me for the deeper ones.

Anybody have experience?  How is surgery handled for deep, small lesions?

KatyWI, Stage IV, maybe still NED 4 months, or maybe not.

Just keep going!

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/4/2010 - 11:41pm
Replies by: rj, Anonymous

I just had blood work done by my primary care doctor and it showed lymphocites low creatinine high,along with several other things that were flagged. I was at my oncologist and had blood work done about a month ago where nothing showed up abnormal.  I'm scheduled to go to a nephrologist, have an ultrasound done and some more lab work, so my primary care doctor clearly thinks we need further checking. Might this be something to do with melanoma, or am I looking at something entirely different?  I'm in good health otherwise.

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