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.

Expand/ Collapse Topic
 
Replies By
View Topic
sharmon's picture
Replies 3
Last reply 4/22/2011 - 10:38pm

Hi, we are sitting in Houston waiting on a trial to start on Tuesday,  MEK and Alimpta,  Brent has been on MEK alone for over 15 months and the last scan showed some growth.  He is Braf negative!  When is it discussed everyone they just scratche there head.  No one understands why or how.

Back In May of 2009 he went stage IV and started IPI with carbo/taxol and went 9 months stable before he showed progression.  In Jan of 2010 he did one round of Bio chemo and spent a week in ICUl.  Scans did not show any improvement and it was stopped due to side effects.  The next month( February 2010) we found MEk for solid tumors (no Braf necessary). He did MEK for 14 months, stable until March 2011.

He has a chance to do a ABT-888 parp inhibitor in OHIO in May.  His tissue says he is qualified for this trial.  If we do this trial on this Tuesday he might miss his chance in OHIO.

We have been in contact with NIH and he is HlA-2 negative and is a possible qualifier for the TIL trial in Bethesda MA.

Here is a thought for JIM B  as well as the others here is consider.  Was all this stability due to IPI followed by Bio. and shoud we reintroduce IPI?  This theroy would support late response and a needed reintroduction.  He is Braf negative and there is no real reason he should be responding to Mek.  We talked to Dr Weber about IPI (yervoy) introduction and he said NO with out any explanation.

So do MEk wcith chemo on Tuesday....... wait and do ABT-888 with chemo in OHIO in May ,   or push for reintroduction of IPI......or a Til trial ( not good, since he could not take the Bio Chemo on Jan of 2010)

So you see our concern.  Brent is in great shape for a 63 year old with lung mets.  Able to work and travel.  If you didn't know about the melanoma, the rash on his face from Mek looks like a teenager.

Any feedback from the people here would be helpful.

Brent and Sharon

 

 

 

 

 

Login or register to post replies.

awg's picture
Replies 5
Last reply 4/22/2011 - 8:09pm
Replies by: awg, Anonymous, King

Diaganosed in April 2011.

Had surgical excison of site w/clean margins. Sne. Node mapping reveiled 1 or 4  pelvic nodes removed to be positive (superficial node, deep was neg). The plan is a suprficial node dissection (open extraction) on positive side w/ high dose Interferon infusion for 30 days and 3 day per week injection to follow.

My questions is has any had node dissection with robitic assistance vs open method, if so at what facility?

 

In my research the Robotic surgery looks like a much less invasive approach. I am not worried abot scars, but I am looking for a lower infection rate and faster recovery so I may begin Interferon sooner.

 

Thank you All and my prayers are with each and everyone!

 

 

 

Login or register to post replies.

adgesoph's picture
Replies 1
Last reply 4/22/2011 - 5:44pm
Replies by: Anonymous

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?

 

Adrienne

Login or register to post replies.

Dynasysman's picture
Replies 5
Last reply 4/22/2011 - 2:40pm
Replies by: EmilyandMike, Dynasysman, Anonymous, Carol Taylor

I am 5 months NED after finding melanoma in a lymph node in my left posterior neck. We never found a primary, and I had a left posterior neck lymphadenectomy (36 nodes out) last December. So far so good.
Last September, my noise started running. This problem has gotten worse over time, to the point where I have a pretty much permanent post-nasal drip, hacking cough, and can't get more than 4-5 hours sleep at once (not a good way to fight cancer!). My ONC is fairly sure thue problem isn't allergies, but cannot offer much help on what it is.
I know that my issue is pretty small compared to what many of you deal with, but I worry about how to keep fighting melanoma when I'm always tired and dragging. Plus, my wife cannot get any when we're in the same bed, which stinks for both of us.
Anyone else have an experience like this? Suggestions?

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

Login or register to post replies.

awg's picture
Replies 16
Last reply 4/22/2011 - 12:12pm

I am interested in hearing from other folks who have taken the 12 months of Interferon.

5 days a week (infusion) for first month

3 weekly injections from remaining 11 months

Did you have a port placed for the infusion portion of the interferon?

Seems excessive for 30 days of use. ( I hope!!)

I have no problem with needles and at this point have really good veins that make for easy sticks, I may be under estimating the effects of the interferon on my ability to stay well hydrated thus leading to issues with IV sticks.

 

Thank you,

AWG

Login or register to post replies.

EricNJill's picture
Replies 14
Last reply 4/21/2011 - 10:17pm

Eric's Oncologist told him he doesn't have 30 days to wait for the washout period to get into another clinical trial because his cancer is spreading fast.  He said that Eric needs to start Yervoy immediately, but Eric's insurance does not cover the cost of the drug.  We were told we could appeal but Eric's Oncologist said they aren't having any luck with getting the insurance companies to cover Yervoy.  He has had other patients running into this problem.  Has anyone here had any luck with assitance?

JillNEric in OH

Login or register to post replies.

adgesoph's picture
Replies 6
Last reply 4/21/2011 - 4:11pm

My dad is being discharged from Vandy because they say there are no more trials for him there anymore.  Needless to say I'm pissed but he's going to try ipi at UVA, closer to where he lives.  He's getting gamma knife at Nashville for his 3 brain mets and then will return home.  He also has 2 lung mets, 2 tumors on the back of his neck (very painful) and a tumor in his pelvis.   However I guess they feel his disease is pretty aggressive, after not responding the the braf brain met trial.  I just hope ipi can start working in time.  Not sure if he has 12 weeks, according to these doctors.  Anyone had a faster response?

 

Adrienne

Login or register to post replies.

TEAMM4M is a marathon training program for runners committed to raising money for the MRF.

Want to run a full or half marathon?
Want to join the TEAM?
Know a runner who might be interested?
Learn more here or contact me at cedrington@melanoma.org.

Carolyn Edrington
National Director, Miles for Melanoma
Melanoma Research Foundation

Login or register to post replies.

TracyLee's picture
Replies 7
Last reply 4/21/2011 - 3:37am
Replies by: nicoli, Anonymous, Carol Taylor, TracyLee, Carmon in NM, Sharyn, Terra

Hello,

I have a scalp graft that was successful last May. Since then I've had 2 recurrences and 2 pinch graft surgeries. I'm now having a scalp resection to cover the bald spot, as I need radiation. I've also got nodes back in my neck, despite a neck dissection last June.

I'm so discouraged! For whatever reason, this surgery next Monday is bothering me more than any of the others, including the original graft which was no fun whatsoever. I'll have 2 surgeons on Monday: plastic surgeon working on my scalp, and my regular oncologist doing bumps under my scalp and the neck nodes.

Everything has spiraled down so quickly that I can barely breathe. I'm going today for an ultrasound guided fine needle biopsy of my neck (to confirm what they all suspect). I can't find much info about what to expect on the ultrasound, other than it will take 2 hours.

Has anyone done radiation after head grafts? What do I need to do to prepare myself? I work full time, and shudder at the time I'm going to miss from work once I start radiation.

I'm still Stage III, so I guess that is a ray of sunshine in a gloomy outlook.

Thanks,

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

Login or register to post replies.

lindas58's picture
Replies 4
Last reply 4/20/2011 - 8:17pm

My husband has been complaining of itching at the excision site & also says its sore...Should we be concerned about this? He was basically turned loose so don't know who to ask. Thanks Linda

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 4/20/2011 - 8:17pm

Hi all,

Quick question: I had a punch biopsy on my toe. It was moderately atypical with clear margins.

Had more re-excised via slightly bigger punch with no residual atypical nevus seen (which I was expecting)
Had stitch out yesterday after 4 weeks of stitches. It is a bit of a mess, due to it being on toe, one stitch popping out from day 1, etc.

I just noticed right in the middle, deep down, a spec of pigment (stitch? dried blood? pigment?) It basically looks black & dark
I can't imagine pigment since it hasn't even healed, so it's not like it grew back within hours!? Just wondering if anyone had thoughts. I tried to "grab" it with tweezers but it's deep and isn't moving.

Do you suggest I call and go back to derm?

Thanks

Login or register to post replies.

Vermont_Donna's picture
Replies 8
Last reply 4/20/2011 - 7:36pm
Replies by: Vermont_Donna, Barb Kotti, Anonymous, Ranisa

Hi everyone,

There is an article on Good Housekeeping about a woman diagnosed with stage 3 and then stage 4 melanoma and her journey with treatments.

People may find it interesting; it seems to have covered some of the newer treatments...Ipi, PLX4032. She was treated was tremilimumab....guess I am not sure what that is.....but I will research that.

Enjoy!

Vermont_Donna, stage 3a

currently stable (NED) after 4 infusions of Ipi, round two to start May 11

Login or register to post replies.

lhaley's picture
Replies 14
Last reply 4/20/2011 - 6:41pm

I've been having stomach pains and had an ultra sound by a local Doctor.  It showed possible calcification of the gallbladder or stones that had adhered to the gallbladder. He set me up with a local surgeon. Meanwhile I sent a copy of the scans to my melanoma specialist to compare. It really irritated me that the local hospital said they had nothing to compare to and I had handed them my scans from 2 months ago.....   Anyway, the surgeon seemed wary to operate on  me because of my history and wanted to wait till my next PET.  Just got a call from my melanoma specialist that they agree that the ultrasound is not clear cut.  They are setting me up with a GI oncologist that is part of their team.   Here's to hoping that this is just a strange way to present gallstones!! 

Linda

Stage IV since 06

Login or register to post replies.

TracyLee's picture
Replies 1
Last reply 4/20/2011 - 11:18am
Replies by: Carol Taylor

Hi y'all,

Hoping and praying no one else faces a scalp re-section. That being said, I wanted to post that my surgery took 6 hours, 2 surgeons (plastic and oncologist), 2 anesthesiologists and I had an AWESOME outcome.

I insisted on some sort of anti-nausea drug. There's nothing worse than puking for days after surgery! My plastic surgeon prescribed Emends 40 mg, 3-4 hours pre-op with just a sip of water. I also had Compazine (suppository) and will ask for the same 2 again if I need any further surgeries.

NO nausea after 6 hours of general anesthesia! Plastic surgeon injected pain meds directly into my 3 incisions, and literally, I was only "uncomfortable", not in pain, from the drains. This was my most extensive surgery and the BEST by far. I'm back at work full time a week later (I still have 40 staples in my head).

Please be your own advocate and don't settle for "everyone gets sick after anesthesia". I now know better and will expect nothing less!

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

Login or register to post replies.

Leigh's picture
Replies 43
Last reply 4/19/2011 - 9:28am

Hi all,

I would really appreciate any help/experience as I am in a complete panic.  I have been sent CT results to my home address without my surgeon being notified and he does not want to discuss them with me over the phone over the weekend without seeing them himself.  I can see his point but I feel sick to my stomach and need to find information quickly.

My background is that I was diagnosed early December with a 0.83mm, non ulcerated, no mitoses, Clarkes IV melanoma, no lymphvasc invasion, on my foot, WLE performed and SLNB was negative.  About 2 weeks after the operation I started feeling discomfort in my leg which seemed consistent with lymphatic obstruction, achy feeling with upper groin discomfort.  My leg was 3cm larger than the other and I did have an infection in the wound site so that was that.

The upper groin ache has continued though with no enlargement on measurements and ache went to deeper in my pelvis on that side (not terrible just obvious discomfort).  The surgeon felt this was related to surgery and didn't advise tests.

I sought a second opinion about the tests and we went ahead with a CT on Friday.  I have just got the results in the mail today (Sunday) as hadn't checked the letter box.  I am in a panic about what these mean - my GP says it could just be a red herring but I am not sure as it is the lymph nodes that are changed.

Please if anybody has had this happen to them and it has all turned out fine write back!  The comment is "a few small lymph nodes are identified in the groin, retroperitoneum and porta hepatis.  These are not involved by size criteria, however consideration for PET scan should be considered"  The nodes are 11m, 10mm and otherwise less than 10mm.  (Incidentally they found "most likely a haemangioma" in my liver).   Could this be a red herring, could it be nothing.  It seems unbelievable as the sentinel lymph node was negative and the surgeon was very confident that he got the correct one.

I have an almost 3 year old and 6 month old baby and I cant bear to think about what this might mean for our family.

 

Login or register to post replies.

Pages