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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Kimmer's picture
Replies 6
Last reply 4/23/2011 - 8:02pm

Hi Everyone,

I am truly most humbled as this day marks the 5th year since my last surgery for recurrent melanoma.  It is also my birthday, so every year that passes is a true blessing.

I have had a little virtual party, of sotrts, going on at OTBB today and would invite anyone who cares to venture over there to do so and do a little reading.  My profile is under Kimmer or can be viewed by clicking on my name.  I only direct anyone there in the interest of offering hope.

Hope can overshadow any of our fears if we just surrender to it.

Love and the very best thoughts to all!

k.

And remember, no matter where you go, there you are. Confucius

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sharmon's picture
Replies 7
Last reply 4/28/2011 - 4:12pm

Brent and I are in Houston for MDA, and had the opportunity to spend time with Amy.  She looks and sounds great, we went out to eat and a little Easter shopping.  She is dealing with a lot of pain and gets tired, but she enjoyed getting out of the house.  Her battle has been long and she has had to be an  advocate  ( doing her own research work )as well as the patient, and a mom, while Dennis works,  not easy...... 

She is doing Hospice and finds that helpful.

She has found her peace and has a strong relationship with God, and takes one day at a time.

She finds it hard to get on the internet and doesn't know where her computer is so you may not hear from her very often. 

We met the kids and wow what a great family. 

I just wanted to give you all an update.  We will be here for 6 weeks and plan to see her again.

Brent and Sharon

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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

 

 

 

 

 

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himynameiskevin's picture
Replies 12
Last reply 4/23/2011 - 8:14pm

Well, it's midnight, I just got home from a long day of shuttles, flights and airports. But before I lay down to sleep, an update:

So.., I had another solo trip the NIH in D.C. on Tuesday for my forth round of monthly scans. One day of traveling, one day of bloodwork and scans, and today, the doctors visit followed by the traveling home. And this months results are..

Things are still shrinking. At a snails pace. But still shrinking. There is nothing new and my brain is still clear.
Not a cure, but great news nonetheless. My doctor did mention that it appeared that one might be a little bigger, but because it's so small, and since all the others are shrinking, she thinks it most likely just seems like that because of the way the CT scan image was spliced. I go back in another month and see what they have to say about it and the others.
She said not to worry about it. ...I'm sweating bullets.

Each month I really hope and pray for some... bigger number I guess, of percentage down or tumors disappeared. (as we all do I'm sure)
But it seems each month, the progress has been getting slower and slower, and I'm a little worried about the months to come. :/
We'll see. I guess I'll cross that bridge when I get there. I try to remind myself, that just 6 months ago this stuff was spreading out of control and I would've done just about anything to get it to pause, even if only for a day. And I guess I'm pretty fortunate and should be happy to be where I'm at right now, even if it isn't where I hope to be someday. And I can't rule any possibilities out. From what they've told me, they've seen just all sorts of reactions in different people, different timelines and effectiveness, progress or lack thereof etc...So it's really hard to say what to expect. I also heard a guy in the waiting room mention to another guy that his stuff didn't really budge for 6 months, then something kicked in and all of a sudden his adopted cells just went to town on all the enemies. :) ...Made me hopeful.

We'll see what next month has to say.

Until next time, I hope you all are doing well, and as always thanks for the positive thoughts, wishes, prayers, comments, and happy dances.

-Kevin

 

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Jan in OC's picture
Replies 16
Last reply 5/1/2011 - 5:20pm

Just got back from UCLA with my husband.  Got the latest CT results after the 12 week IPI Trial.  All results point to Non-response.  Scans were compared to previous scans in Jan '11 and Dec '10.  Here is the technical stuff!  Hard to read.......

CT of Ab and Pelvis:  "interval worsening of hyperattenuating hepatic lesions.  In addition confluent gastrohepatic, peri celiac, and portacaval nodal densities appear larger.  New splenic lesions are seen.  Left lobe now 4.3 x 4.1 cm, was 3.8 x 4.4 cm.  Caudate lobe now 3.6 x 4.8 cm, was 15 x 19 mm.  Right iliac lymph node now 2 x 2.2 cm, was 17 x 19 mm.  Final Impression: Progression of hepatic metastases, and nodal metastases.  New splenic metastases".

CT of Chest:  "Interval enlargement of multiple thoracic lymph nodes.  interval enlargement of multiple , at least 8, soft tissue nodules within the thoracic chest wall with at least one new nodule see.  Interval increase in size and number now numbering in excess of 100 pulmonary parenchymal micro and macro nodules.  Focal point of peribronchovascular involvement is seen within the left upper lobe concerning lymphatic involvement.  Right paraesophageal lymph node now 16 x 15 mm, was 9 x 7 mm.  Right lateral chest wall nodule now 22 x 17 mm, was 15 x 14 mm.  Left lower lobe now 14 x 13 mm, was 8.3 x 8 mm".

"Multiple thoracic vertebral body lesions with compression fractures of T8 and T5 with patency of spinal canal.  Height loss of the T8 vertebral body associated with interval development of multiple lytic lesions within the T5, T6, T9 vertebral bodies.  Final impression: Interval increase of pulmonary nodal, chest wall metastases.  Multiple vertebral bone metastases with compression fractures of spinal canal"

Basically lots of big words to say he is getting worse and this nasty disease has now spread to his bones. All I gotta say is #$%&@#$%&*!!!

Doc is now worried that the Brain mets may be reappearing, so moving up the timeframe on the MRI.  Very few options offered to us right now. We are  feeling a wee bit depressed.  Just can't get any good news!  Waiting on MRI to figure out what we can do next.

Jan, wife to dirk

laughter is the best medicine

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jean c's picture
Replies 3
Last reply 6/8/2011 - 9:42am

Has anyone been diagnosed with the above, and what did it look like?  My next to little toe is completely light purple under the nail and has been that way for several months.  It hasn't been bumped or anything.  Comments??

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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

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mzeigler's picture
Replies 22
Last reply 4/25/2011 - 10:52am

I just wanted to report that I lost my wife of 31 years to melanoma last Tuesday.  We started this battle 8 years ago, with acral melanoma under her

right thumb.  After several surgeries, the entire thumb was removed and we had clear scans for 4 and a half years.  Then a small lung met appeared.

That was removed early in 2010.  We had clear scans for about 9 months and then they appeared in her liver, hip bone and lungs again.

We did il-2 at Johns Hopkins is September and October of 2010, which was very difficult.  Scans showed it did not help.  We started compassionate

ipi in December through February, but the bone mets were so painful, we had a partial hip replacement.  While in rehab, the brain mets appeared

and her liver became extremely swollen.  We came home the middle of March and spent the last few weeks together.  I lost the person I was

closest to my entire life.  We shared so many hopes and fears  and life experiences, I can hardly imagine going on without her.  We have 2 sons

which she advised me to be strong for.  At some point I hope the agony will let up, but I don't know.  Her last words spoken were wispered to me

that she loved me.

 

Mike Zeigler

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Rendergirl's picture
Replies 21
Last reply 6/6/2011 - 9:36pm

My pathology came back, the wide excision of my chest wall came back clean, no cancer, but cancer was in my lymph node in my armpit. I met with my surgeon today and she's having me in for a PET scan on Tuesday. Then Wednesday she's doing surgery to remove the rest of the lymph nodes in my armpit. She said I will have an "S" shaped scar, and a drain, and I will stay overnight in the hospital. Drain will stay in 1-2 weeks, and I will see a therapist so that I don't get lymphadema in my arm. And I've been officially upgraded to a stage III. You guys are so awesome and so far everything you've told me has been %100 right as far as what to expect.

Can someone please tell me what to expect with the PET scan? I've been told I'll have an injection, then I'll have to drink something and stay in a dark room until the scan. How hard is it to drink the stuff? Is it chalk-like?

Can someone else tell me what the surgery to remove all the lymph nodes was like, including having the drain for a few weeks?
 

I was talking to the surgeon today with my mom and she kept saying things like "Survival" in terms of "We don't know whether removing all the lymph nodes will affect your survival". It completely freaked my mom out, she didn't think things were that serious yet, and seeing her upset really upset me. Now my whole family is convinced I'm fighting for my life and that things are deadly serious.

Just hopiing for some info here, and maybe a hug or two. Been crying all day... so scared. Thanks guys... again, your are all so awesome. I even told both my surgeon and oncologist about this site.

Becca

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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

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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

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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

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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

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Manubuzzi's picture
Replies 5
Last reply 5/6/2011 - 4:27pm

 

Greetings to all, 
 
Hope you are doing well. 
My mom already had two weeks of whole brain radiation and already finished a session of 6 days with temodar.  Since then, she has regained some speech abilities and her motor skills have (slightly) increased.  However, now, we have a new worry:  her concentration, comprehension, and memory have noticeably worsened.  She confuses colors and body parts, she cannot remember the names of her children, she has a hard time understanding orders, and she confuses her words.  At times she has moments of clarity where she is completely lucid and coordinated, but those moments are getting fewer and farther between.  
 
Has any one of you suffered these types of confusions with radiation treatment?  She does have several brain tumors, and maybe those are to blame for her current state, but I just cannot believe that they have advanced so quickly in so little time.  Please write me with your experiences or ANY advice you have.
 
A hug from Argentina,
 
Manuel
Son of patient

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tennisgirl's picture
Replies 10
Last reply 4/25/2011 - 2:01am

Hi everyone.  I sure enjoy reading all the posts and gleening all this helpful information.   This board gives me encouragement and hope.  I have failed GSK BRAF/MEK and now will try IL-2 starting on Monday.  Who was it on this board that is NED after IL-2 and had a lot of helpful advice on how to get through it, what to take to the hospital, etc...??  I would sure appreciate their email.  I can't seem to find the post.   Thank you for responding!  Keep on keeping on.

 

Marian

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