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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-The melanoma fist was found when she was 25 and they cut it out of her lower leg.
-Now at age 55, it moved into to her limp nodes on the same leg.
-They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
-After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
-They gave her 6 months to live and told her there is nothing else they can do.
-I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
-My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.

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Wendi Lynn's picture
Replies 13
Last reply 10/20/2010 - 4:28pm

Here is my background:

Mole removed and diaginosed as MM on 5/27.  WLE on 6/15.  FNB for enlarged lymph node on 9/1 positive for MM.  PET scan on 9/13, questionable for lymph nodes under arm.  No further testing done.  Modified left neck dissection - 32 lymph nodes removed on 9/22 - only one positive for MM. 

Today I return to my oncologist for my 2nd meeting with him (met with him first on 7/1).  He is not a melanoma specialist and honestly I'm not sure how much experience he has with it at all.  I'm wondering what questions I should be prepared with today.  I've read here that people take alot more tests than I've had so I'm not sure if I should be requesting them (blood, brain scan, CAT scan).  When I did meet with him the first time, he did say that if the lymph node came back positive that we would do Interferon. 

What are the key things I need to ask for now?  The doctors, so far, have not been very willing to volunteer info or tests (I'm assuming because I have HMO insurance), so I'd like to be prepared to ask for those things up front.

Thank you!!!

Wendi

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skysar's picture
Replies 6
Last reply 10/20/2010 - 2:09pm

I am going to have my 3rd treatment this week.  Leaving for MDA tomorrow for scans.  We are still going thru with the scans even tho I only had the Temador for the 2nd treatment due to a rash I developed.  Noticed mainly nausea, headache, low grade temperature.  We will see what this treatment brings.  My white cell count is low as well as the neutrophils.  Also my eisonophils are high...maybe due to the rash, bronchitis.

 

Sue

Hotlanta

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bluepeople's picture
Replies 7
Last reply 10/20/2010 - 1:42pm

 So my husband was recently diagnosed stage IIc, did surgery and had his PET scan yesterday.  Found out today that the PET scan was clear!  I was so worried that something would show up.  It seems that melanoma never really goes away, but this is such good news for us.  He is going to attempt the year of interferon treatments and we'll go on from there.  I just wanted to share my excitement and thank people for their support on this board. 

Akilyn

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sharmon's picture
Replies 5
Last reply 10/20/2010 - 1:09am

Hello, Since February and again  last week Brent had his scans and continues to be stable and they think one of his tumors in his lungs is completely gone.  He is now on his 9th month and the rash is managable.  He has some fatique but able to do most anything he wants to.  As part of the treatment they wanted to test the tissue again for mutation changes and decided to go into the groin this time as they thought that the lymph nodes that had shown up in the scans would be easier to reach than the lungs.  Well the proceedure never got and melanoma out of those spots.... only lymph fluid and they tried two different spots that showed up on the scans!!!!.   So we have to try to biopsy the lung tumors in December.  Interesting... his doctor was out of the country last week and we are going to talk to him to go over the scans and results this week.  Good luck to all of you and thanks for being there.  We read every post.

 

Sharon and Brent ( stage 4)

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Jim M.'s picture
Replies 4
Last reply 10/20/2010 - 1:03am

Hi everyone,

 I've been on hydrocortisone as a hormone replacement for 2 years (due to the Ipi side effect of swelling of the pituitary gland). I decided to have a bone density scan done. The results showed that my spine is on the borderline for osteoporosis. They also showed my leg bones were slightly better in the caution zone. Wow, that is a wake up call. I'm only 53. Two different doctors said the hydrocortisone leads to bone loss and my onc said long term use can certainly cause it. My primary doc. prescribes Alendronate. Reading the cautions it says Alendronate can cause jaw problems in some patients. The risk may be greater for those with cancer, using steroids, etc.

 I will see my endocrinologist at Moffitt in a week. I REALLY want to get off hydrocortisone. I tried twice, unsuccessfully. The second time it was a slow taper. Each time I had nausea and had to resume the normal dose. My hormone levels weren't increasing either. I tried calcium tablets but so far I haven't been able to tolerate them. I know a test is to drop a pill in water and see if it dissolves within 30 minutes. I'm really going to make an effort to exercise 5-6 days a week with some upper body strength exercises.

 I'd really like your advice, suggestions and experience on this topic.

 Thank you and God Bless,

 Jim M.

 Stage 3C

 

 

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himynameiskevin's picture
Replies 18
Last reply 10/19/2010 - 8:27pm

So I'm 3 weeks and 7 days out of the hospital and IL-2 treatment. All side effects have passed except for a lingering itchy-throat cough that is going away very slowly. I had an MRI done last Monday and thanks to the stereotactic radiation I had done, the tumor in my brain has "essentially vanished" and the rest of my brain appears to me clear of any new lesions. Good news. As for the visible ones on my chest and my back.. the little nodule on my chest definitely seems to be smaller than it was at one time. Good news? After about two weeks after the treatment, the large mass on my back definitely seemed smaller, softer, and any pain accompanied with the pressure of it's size had pretty much disappeared. My wife and good friend confirmed this. Unfortunately a day or two after my MRI, it started to come back to it's normal shape and size and the slight annoying pain is back. I have heard that it is possible for tumors to swell up or grow in ways before shrinking. Has anyone ever heard of this happening? Or experienced something similar? And as for the ones on the inside (liver, lungs, lymphs) I hope they're following the one on my chest and getting smaller. That would be nice. I get my CT scan on the 25th and talk to my doctor about the results on the 27th. Hoping for the best. If I have any positive response to the IL-2 it looks like I'd be doing another round of the IL-2. Which I'd be glad to do.. if that's the case. Lastly, I just found out that my tumors have the BRAF mutation, so the the PLX drug or Ipilimumab seems to be the next step if the IL-2 isn't effective. My doctor mentioned some clinical trials aren't available to people who've had a brain tumor, unfortunate. Not sure if that applies to these options, guess I'll see when I gotten there. Hope all is well with everyone here. It's nice to part of this community. A constant reminder that we're not alone, and there is always hope. Enjoy your day.  -Kevin

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donswife's picture
Replies 6
Last reply 10/19/2010 - 5:28pm
Replies by: emilypen, donswife, Anonymous, Sherron

Hi.  I am a new user who has a friend who found this site extremely helpful and informative.  It has been recommended to my husband that he participate in a clinical trial with the drug mek kinase.  Does anyone have any experience with this?  We are in Canada.  

Thank you so much!

Never Give Up, Never Surrender

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Rebecca and Bob's picture
Replies 9
Last reply 10/18/2010 - 10:24pm

Hi all,

It's hard to believe it's been two months already. My husband Bob has been doing well but he's up at NIH today getting his scans. We go tomorrow to get the results. I try to remind myself that scans are good and to be positive, but I have to admit I hate sitting in little rooms waiting.  Anyone who doesn't know our situation Bob started out as Stage III in January 2007, before our youngest son turned one. Then he progressed to Stage IV on March 2008. In April 2008 he started IL-2. It's been 15 months since his intestinal surgery for mets and I'm just praying he is still NED. 

Looking for any prayers or good thoughts for some good news tomorrow. Thanks everyone for always being there.

Rebecca

Believe

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Linda/Kentucky's picture
Replies 6
Last reply 10/18/2010 - 9:52pm
Replies by: Linda/Kentucky, SusanE, LynnLuc, Lori C, Anonymous

Hello everyone

My husband stage IV with "innumerable" mets to liver and lung as well as some other areas of his body are again, like so many of you, in limbo what treatment to do next.  We have an appointment Thurs. with our oncologist at Vandy to give us some guidance and advice.  This is a short rundown so far.  Nov. 09 diagnosed with melanoma behind right ear.  Sent to Vandy was scheduled for radical neck but cancelled following scans showing mets to bilateral femurs.  Took 2 rounds of high dose IL-2.  Results were increased mets to lung and liver.  Sent to Knox. Tenn. for Ipi compassionate trial in April.  Had kind of a tough time throughout that with lots of fatigue and aches.  Scans at 12 weeks showed no new mets but increased size of mets.  So goes the "12 week waiting period"  Scan results on Oct. 6th showed strong progression everywhere.  So far he has been lucky (blessed) no brain mets especially since original spot was behind ear on mastoid bone.  So here we are now back to square one and nothing up to this point has even began to stop this ugly beast......It is so discouraging to keep hearing bad news EVERYTIME we go to the Dr. 

Anybody with ANY ideas?  I have researched till my brain is fried.  Were kind of looking at the Novalis radiation which can be used on lungs & liver but.... he may have tooo many mets to that area,  We also thought about some type of chemo along with this.  I would REALLY like to be able to do the AntiPD-1 but due to taking Ipi we are disqualified. So anybody who is thinking about Ipi consider (when available) this tx. first.  I have heard Temodar, Taxol/Carboplatin and don't know if he would be candidate for Gleevac? 

Thanks for any advice or encouragement or paryers or whatever your willing to give..........

 

Linda/Kentucy

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

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SandraDee's picture
Replies 7
Last reply 10/18/2010 - 9:28pm

Hi MPIP friends:

Again, this is Sandy - Buffalo, stage IV and battling for the past 3 1/2 years.

To recap, mel has traveled now to my small intestine (has been in lung since original dx).  I am anticipating surgery THIS WEEK for sm. intestine, as the symptoms have been constant....fever, pain, and now 4 sub-q's, all of which have "popped up" in the last 2 weeks.  Darvasat is my new "best friend", every 4 hours.  Otherwise, I am flat out on the couch.

After having the capsule endocscopy canceled late last month, I did then go onto having an upper GI series and upper GI scope.  Both confirmed a "large mass" on the intestine.  This wasn't enough to prompt immediate surgery, and I've been held off much longer than I would have prefered.  Last week I was told that the #1 surgeon could not slot me in until 10/27....I couldn't fathom letting it go that much longer.  I will "see" another surgeon at the same facility tomorrow (very highly recommended), and am hoping and praying for surgery on Tuesday.  I have been told that I should have no false hope....that the surgery alone will most likely NOT relieve my symptoms.  It WILL, however, put an end to my hemoglobin being in the 7-9 range, which is very exhausting.  I've had 6 units of blood transfused thus far.

My struggle (well, the hardest 1) is in actually waking up and wondering if there are any new sub-q's, or if the ones present have grown overnight, which they tend to do.  It's so hard to even want to look and feel my body, for fear of what I will find each day.  Mentally, I keep telling myself that at least they are popping up, and not traveling to yet another organ.  But, when you can see what's happening on the outside, it's hard to think the same isn't happening on the inside. 

I am scheduled for a C Scan tomorrow afternoon, and a PET in the next few weeks.  Do I even want to know the results of my CScan prior to my surgery, or will it just bring me more anxiety? 

I am anticipating getting through surgery, having my blood work get back in order, and then proceeding with a systemic treatment.  My thought is Temodar ASAP after surgery and then ipi just as soon as I get the green light.  Of course, the intestinal issue needs to be 100% resolved before I could begin the ipi.  I am also awaiting test results of BRAF.  BRAF of course  has some great results, but the return with a vengence aspect doesn't set well with me.

So, what am I looking for here?  Prayers are so appreciated, of course, as are your opinions.  I'm telling you, Amy Busby is my rock right now.  To watch her fight on and on is simply amazing.  I know it has a lot to do with her strong faith.

Blessings to all of you! 

Sandy - Buffalo

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Eileen L's picture
Replies 11
Last reply 10/18/2010 - 6:25pm

Hi to everyone. I haven't been on the board much since the new format was instituted, but think of this wonderful community often. I am a stage IV survivor, diagnosed stage IV over three years ago.

Wanted to share my good news with you all. I had my four month scans this week and everything remains stable, no new growths. Just a few relatively small tumors hanging out in my lung and right adrenal gland, not growing and not causing any problems. I feel so blessed! For those of you who don't know or remember me, I am one of the very few people who responded to soreafinib/Nexavar. I have been on a full dose of the medication for over three years now.

Thanks to all on this board who continue to share their experiences and hope with our community!

Eileen L

Stage IV

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jtheisen29's picture
Replies 6
Last reply 10/18/2010 - 5:27pm
Replies by: Anonymous, Marshipops, stillhopeful, Phil S, jtheisen29, Tim--MRF

Hi all!

I am new to the board but find it to be a great asset and so many people who are supportive. I myself do not have melanoma but my twin sister was diagnosed with stage 3b Sept of 09 while 5months pregnant. Fast forward a year and she has a beautiful healthy baby boy (and 6 year old) and currently N.E.D with 51 more shots of interferon left. I am confused by the IPI trial and have gone onto clinicaltrials.org and read the trial descriptions but honestly it is like a different lanuage to me:) I see many posting who are stage 3 considering the trial. My question is what are the qualifications for a stage 3 to partake in the trial. My sisters melanoma was surgically resected, and was only offered interferon or watch and wait. Right now there is no evidence of diesease and we are praying that it continues. After everything that I have read about interferon I am interested if there is anything else that she could enroll in to raise her chance of no recurrance. Her tumor thickness was 3mm and ulcerated with microscopic involvment in 1 node. So I don't know if she would be unable to to do any other trials because there is no measurable diease. Any info that could be shared to help me understand this medical mumbo jumbo would be great!

 

Thanks,

Jessica Theisen http://www.caringbridge.org/visit/saramcevilly1

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n/t

Insert Generic Inspirational Motto Here

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lhaley's picture
Replies 14
Last reply 10/18/2010 - 3:42pm

Surgery went well yesterday. The Dr. said better than expected. What did he expect????  He was concerned that the tumor on my arm was entangled in nerves - it wasn't!!  He also took three nodes from under the collarbone. We know from a fna that one was melanoma.  More than 5 weeks from first ultra sound to do surgery since a second spot was picked up. During that time there was no growth!!

Back to the tumor board to decide next step.  Since hopefully  will be at NED status once again (yeah!!) there are really no options.  I've already done Leukine and have had 4 recurrances through out the body since then.  It was my choice to operate and not go with a trial or IL2. They are testing me for B-raf and there is discussion about doing interfuron even though I'm stage IV.  My melanoma has presented in a unique way - solitary tumors and this is the first time in a node - over the past 4 years. 

My body has proven by my allergies to be very sensitive to any medications.  I hear the tumor boards recommendations in 2 weeks.  Celebrating the day by feeding the grandbaby this morning and now sitting on the couch watching football. 

Linda

Stage IV hopefully NED once again!!

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