MPIP: Melanoma Patients Information Page

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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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NancyGM's picture
Replies 3
Last reply 9/22/2010 - 9:41am
Replies by: jag, NancyGM, TAC

I have been NED for 2 and a half years, working and making under $1000/ month for one year. My disability redetermination with Social Security was denied and now I am in the process of appealing the decision based on the fact that stage IV is a "condition" one is not expected to recover from whether one currently has active disease or not. Without my medicare/ medicaid I will not be able to be monitored for reccurrence.

My question is:  Do I need to find an attorney? I can't afford one. I will have to pay back all the months of benefits I receive during this appeal process if I am denied again. 

For the last year or so, I have been in NED "busy living" land...Please know I admire all who remain here to offer support and guidance while well. Thank you for any information.

NancyGM

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Linda J's picture
Replies 2
Last reply 9/22/2010 - 9:36am

PET scan results were good - there were no new tumors aside from the ones they already knew about. I've got good organs. 

So the plan is to continue on with radiation (I'm in week three) and then have surgery to remove the remainder of the tumor and lymph nodes three to four weeks later. 

They did mention today that I tested positive for BRAF - and then it was mentioned that maybe they will get me on the drug before surgery.  Does this make sense?  I don't know much about BRAF.   Can you do BRAF stuff after the cancer has been taken out?  How long do the BRAF drugs take?  I'm waiting to have an appointment with the medical oncologist in charge of clinical research.

So, today wasn't as bad as I thought it was going to be :-)

Live strong!

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The Gambler's picture
Replies 7
Last reply 9/21/2010 - 10:47pm

With much support from my " loving wife Deb " I feel informed enough to make a choice which way to go in reguards to what type of  treatment. Being at stage 3c my options did not seem to be many, my surgeon and oncologist said no to radiation and chemo which left Interferon and clinical trials. So I tried to soak up all I could on these two topics between the internet sites and my oncologist and it seems that being stage 3c limits my choices ( it opens up more for the stage 4 ).

Since my primary tumor was never found my oncologist said to me it was possible that my immune system destroyed it ( like it is suppose to ) but during the battle one or more cancer cells escaped and took refuge in my lymph node ( groin area ) and was well fed and nurished by the lymph system until it got big enough for me to feel it. If this is true it tells me my immune system was doing its job and there is a chance that it is currently doing battle with the bastards as I speak.

The information I read on the trials and interferon side and their effects frankly scare the hell out of me. I am aware that not everyone has the severe side affects but there is always that chance. The interferon is a year long commitment that can change a good immune system to a poor or non-existent one, opening the door to all the everyday germs and viruses ( even yearly colds and flu are killing people ). So I set out on a quest to get info on non chemical Naturpathic immune system therapy and I see it is a whole other world and most probable there are two camps "chemical and natural".

With being stage 3c at this time I feel I have a shot at the natural path although I know there is a possibility of being well on my way to stage 4 currently but untill I get my next Pet Scan there is no proof so I will continue on as 3c. One of the things important to me is quality of life and currently I feel good as I did before I was diagnosed. I have my loving wife, three beautiful daughters and two georgeous grandchildren.

Through all of this as Deb and I have tried to make sense of it all, understand the pro and con's of choices and decisions. I was imagining the inside of an old western Saloon where people brought in their last hard earned dollar in hopes that whether it be a simple deck of cards or dice you get lucky and get the winning hand  just like we are doing with melanoma, it all seems to be about  "odds, percentages ratio's".

For those of you who read this I would welcome your comments reguarding the Naturopathic Therapy care and what experiences they have had.

Thanks... Bob

bob.rogers2010@gmail.com

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Linda/Kentucky's picture
Replies 2
Last reply 9/21/2010 - 8:15pm

Anybody have an opinion on NCI in Bethesda for stage IV?  This was the first place mentioned to us with initial diagnosis.  Just trying to line up a plan "C" following scans due to be done in 2 weeks.

Judging by the way my husband is feeling at this point at almost week 21 in the Ipi trial  I'm afraid there is going to be a plan "C".  Very strange how he has roller coastered from feeling fairly decent during the last several weeks to feeling this bad again.  I'm not going to give up on Ipi just yet but I am beginning to have some doubts about responding to it.

Any information or guidance on next plan would be greatly appreciated.  He has done IL-2 and finished with Ipi.  He does have bone mets and having alot of pain from that.  Maybe some radiation for pain relief?  Also what pain med's has worked for others?  He has been lucky and only taken Ibuprofen 800mg. and an occasional Hydrocodone (doesn't like) but it's time for stronger now.  Thanks for any info. 

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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Anonymous's picture
Anonymous
Replies 0

Has anybody ever heard the term "tumor fever"  We were told about this today and can't find alot about it.  We were told that you get this with heavy tomor load.  I did read that it could be from tumor's breaking down?  Basically he has had chlls and fever temp spiked 102.8 body felt very hot to touch in the area where most mets are.  Fever lasted approximately 1 hour then went to 97.? and has been without fever since?????

 

Just asking....

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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lhaley's picture
Replies 7
Last reply 9/21/2010 - 12:51pm

A few weeks ago I had a fine needle biopsy on my arm - melanoma. Went and spoke to Dr. White in Charlotte. Another PET before surgery and sure enough 2 more spots lit up.  One was the thyroid which was diagnosed 4 years ago as Hashimoto's disease but it had doubled in size in the last few months. The other was a node behind the collar bone that had shown up on previous scans but was determined to be not showing change. This time it was showing change.  

Thyroid remains fine but the node is mel.  Waiting to hear what the tumor board has to say.  So now I'm a little over 4 years at stage IV. Almost made 1 year NED. Will take the night off and show my emotions and tomorrow will put back my positive attitude and find out what's next. 

I have to give credit to the radiologist in Charlotte. It took him 70 min to painstakingly work around the collarbone and veins that were in the way but he perservered and was able to get a large enough sample. 

Linda

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paleskinisin's picture
Replies 9
Last reply 9/21/2010 - 12:50pm

I'm wondering if there are any AZ patients on here that are later stage.  I'm stage IV and looking at treatment options.  I've been battling for 4 years and feel as though I do have a good team of docs, but I'm looking for second opinions for treatment and just wondering where the AZ folks go for treatment.

Anyone been through treatment here in AZ?  Anyone have a good team of docs to recommend?  Anyone been to Cancer Centers of America that just opened in AZ?

Thanks,

Tina

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lovingwifedeb's picture
Replies 6
Last reply 9/21/2010 - 12:15am

September 19, 2010

   

My husband and I took to heart the recommendation to find an oncologist in our area who specialized in melanoma and was willing to “jump into the boat with him” so to speak. Well, it ended up being the very same doctor that wanted my husband to join his melanoma cancer vaccine trial and broke to him the news about percentages and so on… Portland is not that big.

 

My husband had to admit to this doctor that he had him on the floor by the time he left his office on that first visit but admitted he has learned a lot since then and that he had lots of questions to ask him now that the shock was over. This doctor was very willing to work with my husband and answered all his questions.

 

My husband, Bob is stage 3c, if you remember and had only 3 choices of treatment after his surgery. The metastatic tumor that was located in his leg/groin was rather large, almost 3 inches in length. Although the primary melanoma was never found, one theory of the doctor’s is that my husband’s immune system destroyed it, another theory is that the primary was located in the tumor itself. No proof, no one knows for sure. So, for now some of the cancer cells “could” have escaped from the metastatic tumor in his leg/groin (or not) and until those cells get large enough to be picked up on a scan we will not know if he ever moves into stage 4, which I hope never happens. But if it does… then other therapies would then apply. For now his treatment choices are

1.     Interferon

2.     Cancer Vaccine Trial / 2 people get the drug – 1 person gets a placebo

3.     Do Nothing, Watch and Wait

 

I know my husband well enough to know that his decision was not made lightly. Most important decisions we have made together take great discussion or angst over. Both of us are alike in this so I know the process was difficult for him but I also know it was about quality. It was a difficult choice and a personal choice and it was strictly his choice. My husband has decided to watch and wait. He feels that this choice was necessary to protect his immune system as it stands today. He thinks if his body’s immune system destroyed the primary and the doctors couldn’t find it then this decision has to work in his favor for now. He does not believe in destroying his own immune system to the point that it has to be built back up again. This oncologist will keep a close eye on my husband with regular scans, exams and blood work, every 3 months, then every 6 months then once a year. I have also asked my husband to find a doctor/naturopath to guide him into stronger nutrient care. Anything that would help build up his immune system even more and bring greater strength and better health. Maybe between the two doctors and Bob’s determination we can turn this around for a longer period of time. I am here as his caretaker, his wife, the protector of his heart, and in whatever way I can support him.

This will be my last post in this group for now unless our situation changes (which I hope it doesn’t). Thank you for your support and your suggestions along the way. I have learned a great deal from those of you who have responded to me personally and to my postings. I have joined another group that might better fit my needs as caretaker and writer. As I believe I will be always living with the “Monster Under the Bed” I will be continuing to write about my fears and emotions. If you would still like to follow me please use the links below.

 

I have encouraged my husband to write about his own fears and to begin to post them to the MRF site and ask his own questions directly to you as I’m sure he would like to know if anyone out there has suggestions other than chemical. Look for him soon he will post under the name "The Gambler".

 

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/

 

 

If you would like to follow me in the  “Caregivers” section, the Cancer Survivors Network / the American Cancer Society website please follow this link:

http://csn.cancer.org/forum/138

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ipi in DC's picture
Replies 4
Last reply 9/20/2010 - 9:20pm
Replies by: ValinMtl, Anonymous, Jim in Denver

Hey everybody,

Just wanted to update you on trial, 6 weeks in, 2 ipi infusions and Temador doses prior to this trip.

First for those who know my old handle, I changed it to ipi in DC instead of Mel in DC hope to one day soon change it to Mel out of DC.

We went to MD last Wednesday had CT & MRI on Thursday and then visited with Dr Bedikian on Friday. They were happy with the results so we could stay on the trial :) I have a subcutanous nodule on my lower back that shrunk from 12mm to 9mm and the nodules in the lungs did increase a little in size but it was half the growth than the previous six weeks growth prior to starting the trial.

Since the latest Ipi infusion and taking the Temador the nodule on my back has shrunk further and is almost hard to find. I contribute that to the Temador it did shrink the first dose also but regained its size a week later, but the second dose it shrunk and stayed smaller. So hopefully the Temador will breakup the nodules and make it easier for the Ipi modified T cells to come in and finish the job to totally destroy the remaining cells, which is how they discribed they were hoping this combo work. 

The side effects I am having to date is light constipation just while taking the Temador and nausea meds. Feel nasty for the last day of Temador and two days following (fells like the body has poison flowing through everywhere, which it is) then feel great until next dose. Light on and off headache during fisrts week after infusion. Skin rash I beleive from the Ipi on lower back, armppits, pelvic area at belt line. top of feet. The rash seems to like the hairy areas that hold sweat and heat. And rash type bumps spread out on forearms. Have a constant walking itch over entire body which I think is from the chemo (stops the body and cancer cells from dividing) drying out the skin, starts to get better just before next dose.

My bloodwork has stayed "perfect" on all counts according to Sandy  the research nurse (she was very suprised), which is great, I am less susceptable to infection.

Thats about it, please feel free to ask any questions or thoughts,

David

Fully rely on GOD & try not to ruin today by worrying about tomorrow

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himynameiskevin's picture
Replies 16
Last reply 9/19/2010 - 10:32am

Good thoughts, prayers, stories and vibes would be greatly appreciated this week. I hear the second week is worse by far. But I'm ready, I kind of know what to expect as far as the hospital, treatment and side effects go. So hoping to use that to my advantage. Also, my mom flew in last week and she'll be here to keep me company until Wednesday, and a mothers love is, well, to me, is pure and unabashed, and it's great to have her here. I hope all is going well for everyone. Let's keep our heads up. Keep learning and progressing towards positive outcomes. One day at a time. I'll talk to you all soon. -Kevin

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Lori C's picture
Replies 6
Last reply 9/19/2010 - 5:22am
Replies by: Janet2, James from Sydney, Lori C, Anonymous, Jackie W, jag

Will is doing okay - going for 4th chemo next week.  All visible lesions very small, flat, etc.  However, he is SO tired.    He's on cisplatin and taxol.  Is this pretty normal?  Pain is much better.  But I'm worried - of course.  He's just so worn out.

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Replies by: Anonymous, Janner, washoegal, Brandi, dcarter

I was dianosed with melanoma on August 23 and had surgery to remove the surrounding tissue the next day.  The test came back clear on this mole.  It seems strange to me that treatment can stop here.  How do I know that there are not other moles that are melanoma?  Should I be pushing for other tests or does this seem normal to just remove the tissue and be done.  No blood test, nothing?  I am happy that they are saying my treatment is done but concerned after reading all the post on this site where there were other spots undetected.  Or that it had spead to other areas.

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amybusby's picture
Replies 20
Last reply 9/18/2010 - 7:29pm

A mixed bag, as usual.  The leptomeningial mets (around the brain) are stable, maybe even somewhat better.  I had no problems with WBR or with the temodar.  No idea yet if my spinal fluid is still clear or not, we'll check that next week when I go in for another intrathecial IL2 dose in my head port.

It's been a long time since I last had the GSK BRAF inhibitor (end of May), so we've been expecting at some point  that the effects would wear off.  I've had some growth in the subq system, and the lymph nodes, but the main problem is the growth of bone mets.  I think all were there previously but now are growing & compromising the bones more.  I have a pretty substantial right femer met that's come on strong recently in terms of pain, so I knew something was wrong there.  It's going to need immediate attention.  So the plan is to try for the next few days to get my hands on some BRAF inhib. drug somehow.  I am open to all suggestions, companies, trials, compassionate use plans, inside information, etc.

Assuming we can't do that (a fairly likely assumption) Dr. Papa recommends radiation for the femer & a couple of spinal mets.  The spinal ones aren't hurting yet but as long as we're there....  (radiation would go along again with another round of radiation).

I'm going on Thursday for an infusion of Zometa - anyone done that?  Anything I should watch out for?  (to try to build bone density)

So it's discouraging of course.  It torments Dennis to know there is something out there is practically assured of controlling my systemic disease now that we have the CNS disease stable.  My quick and almost complete response should make me a terrific candidate for other cohorts of the BRAF trials that allow CNS disease, or for compassionate use - you'd think.  But then again we all know rational, reasonable thought processes have zero to do with FDA procedures and / or drug manufacturer business decisions.

So right now I am focusing on staying off my leg and making sure there are no bone breaks im future.  We all know how great I am about letting others do stuff for me (and letting them do it their own way!) so this should be fun.  But I have agreed to do my best. 

Love,

Amy

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My husband was diagnosed with Desmoplastic Melanoma (DM) on the crown of his head, which is a rare type that affects anywhere from 1% - 4% of melanomas depending on what you read.  It also frequently recurs locally.  As such, the doctor says that the melanoma does not behave in the same ways as other types.  DM has no color usually, his was just a bump on his head.  As such, it usually goes undiagnosed and can get quite large before it gets recognized.  We thought it was a cyst.

He had surgery 2 weeks ago to remove 2 cm margin around the site, replacing the tissue with a skin graft.  They did not do lymph node biopsy because of the location of the lymph nodes, and the percentage of lymph node involvement with DM is only 7% usually.   We got the pathology report back.  The margins were clear, but I'm concerned about the other things I'm reading in the path report.  When I look them up on the internet, most of the features look very negative.  The doctor says that DM doesn't follow the normal course, and I hope he's right.  Anyone know about this?  

Here are the results:

Top of scalp, excision:

Histologic type:  Malignant melanoma, desmoplastic type, sectional edges involved comment.

Clark's level:  V

Breslow depth:  At least 0.5 cm

Vertical growth phase:  Present

Ulceration:  Absent.

Lymphovascular invasion:  Absent.

Perineural invasion:  Present

Tumor infiltrating lymphocytes:  Not brisk.

Regression:  Absent

Mitotic figures:  Up to 5 per mm squared

Tumor micros-satellites:  Absent

Precursor lesions:  Absent

"The lesion extends to and involves the deep inked margin and is <1 mm from the 12 o'clock inked margin.  The 3, 6, and 9 o'clock margins appear clear by >1.0 cm.  The separately submitted en face margins show multiple foci of atypical intraepidermal melanocytic proliferation which may represent a field effect phenomenon."

Pathologic stage:  pT4a, pNX, pMX

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MACK under the knife's picture
Replies 8
Last reply 9/18/2010 - 10:51am

Went to the doctor with what I thought was swollen glands and now I have Melanoma and awaiting for them to get me into MD Anderson to get it removed. I don't have the stage but the PET scan says that it has remained in my neck. Anybody got a clue what I am facing the doctor seems to have abandoned me. It is very stressful

 

Mack under the Knife

Nothing is as important as this moment, Your life can be changed in a single Moment and you can live a lifetime in a moment if you believe

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