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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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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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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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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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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Hi,

 

Little worried Lauren has posted for awhile. Anyone know how Jenna is doing??

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Jerry from Cape Cod's picture
Replies 7
Last reply 10/18/2010 - 3:16pm

Just wondering if anyone from the forums will be attending.  I noticed they changed the venue to a conference room.

Jerry from Cape Cod

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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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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Sharyn's picture
Replies 7
Last reply 10/17/2010 - 8:16pm
Hi everyone,
Just back from Montreal and my 2nd round of Ipi is now completed. I had virtually no side effects from Round 1, so I'm hoping for the same this time.  
I also got my Sept 16 CT scan report. It only picked up 2 of the 4 brain tumors that I had treated in May. One is unchanged, the other increased from 6mm to 10mm. I can only assume the other two are either gone, or have shrunk too small to be detected. The lung tumor has increased from 4.4cm x 3cm to 5.5cm x 3.8cm, and the one on my back is now 3cm x 1.5cm. Now remember, this CT scan was done BEFORE I started treatment, so these latest numbers are the baseline for my current treatment. In early December I'll have more scans done, and we'll compare the results to the Sept 16 scan to see if the treatment is working or not. That's about it for now. Thanks so much for your continued prayers and support.
Hugs
Sharyn
Stage IV
Dx Mar 2006, WLE, SNB, ILP, PV-10, Hysterectomy, GM-CSF, WBRT, Temodar, BRAF negative, SRS, Mastectomy, and now Ipilimumab 

 

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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stillhopeful's picture
Replies 5
Last reply 10/21/2010 - 3:38pm
Replies by: LynnLuc, stillhopeful

As a next step, I am considering adoptive cell transfer therapy.  I'm interested in connecting with people who have gone through this procedure (successfully or unsuccessfully), or might also be considering it.

As I understand it, this procedure has been done over several years at the National Cancer Institute.  A similar procedure is also available at a cancer hospital in Seattle.  Recently, it became available at MD Anderson and Moffet (sp?).  Because of my HLAA typing and the fact that I have mucosal melanoma, I can go to MD Anderson or Moffet.  I think I will go to MD Anderson.  Nothing against Moffet; it's just that I already contacted MD Anderson before I learned that Moffet just started offering it as well.

I hope to hear from you!

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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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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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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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ErikaHouston2's picture
Replies 3
Last reply 3/5/2012 - 1:46pm
Replies by: Lori1976, LynnLuc, ValinMtl

I was just recently diagnosed with Crohn's disease. Curious if anyone else here has experience with both melanoma and crohn's or IBD? My melanoma was early (Stage I, .65MM), but the treatments for the Crohn's disease do concern me since they are all immune system suppressing (steroids, Humira, Remicade, etc). 

Some of you may recall MD Anderson running a bunch of tests as they were concerned that my two severe GI bleeds (hospitalized/transfused) were somehow melanoma related. While Crohn's is not a peach, I'll take this diagnosis over melanoma metastisis any day.  It was very nice to have MD Anderson tell me they wouldn't treat me for this :-).

My Crohn's GI specialist is aware of my melanoma history and the complications for treatment of the Crohn's. She has started me on a mild steroid - Entocort.

 

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Anonymous's picture
Anonymous
Replies 0

Hi Linda,

 

How is John doing.???? Hope he is doing better.

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Sherron's picture
Replies 8
Last reply 10/16/2010 - 11:37pm

Hi everyone, Just a note to let those of you who follow our story...Jim has finally accepted to go to the Doctor....We are with the VA and it had been like 15 months since he had been.  It is like starting all over...said they could see him on Dec 23rd....Well, our best advocate that lives close to us (daughter-in-law )got involved...He has an appointment Monday at 10:00am.  He needs to be on some kind of pain management.  I know we have gone to Stage IV, as he lumps and bumps everywhere, bruising like stuff all over, mostly stomach right now....and deep pain in the groin.  He has only worked 5 days in September...and so far 1 day in October.  It hurts, to stand, walk, or sit....so he reclines most of the time.....He had 4 very good years, with nothing being done no, WLE or SNB, just his natural stuff, but it has progressed, and now FINALLY he realizes he needs some pain management.  It was very hard for him to say he will go....and my goodness....Monday, it not here yet.  So hoping he will really go when it gets time on Monday. 

Take Care,

Sherron, wife to Jim

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