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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Jacki, Just checking in to say you are in my thoughts & prayers. I hope that you are well & you are not experiencing side effects from the WBR. Mary

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Karin L's picture
Replies 2
Last reply 11/5/2011 - 7:06pm
Replies by: Theresa123, j.m.l.

I have absolutely NO medical proof with this...just a gut feeling.  A few times I have seen these two issues questioned (different posts) as possible side affects from Yervoy treatment.  I haven't had Yervoy, but I did do HD IL2 Apr-Jun 2011.  Both are immunotherapy treatments.  I have had both ringing in the ears (tried stopping asprin, no help...MRI of the brain done Wednesday, all clear) and lots of hot flashes since treatment.  The tinnitus started about 2mos. ago...the hot flashes about a month or so after treatment (during treatment it was night sweats which is different).  Are these related to treatment?  I have no idea.  I just thought I would put this out there for someone else who might be searching for answers or possibilities in the future. 

Not only is this disease horrid, the treatments can be horrid with their side affects so any little bit of hope helps calm the nerves sometimes.

Karin

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Anonymous's picture
Replies 9
Last reply 11/5/2011 - 1:00pm

Need to know if anyone else has been in my shoes and if so, what advice they can offer.  I had bad stomach pains for approx. 2 years - CT scan and upper and lower GI tests did not reveal anything.  A second visit to the ER for partial bowel obstruction prompted surgery on 9/22/11 which revealed a tumor in my small intestines.  The tumor and about 5" of my small intestines were removed.  Biopsy of tumor indicated melanoma.  I had no previous skin melanomas so needless to say, the doctors and I were shocked at the melanoma diagnoses.  Went to MD Anderson in Houston for treatment options.  All CT scans were clean and showed no evidence of the disease and I thank the Lord for this great news!    However, as the doctor indicated, there can always be a few cells floating around that won't show up on a scan.  According to my doctor, the decision to have any further treatment is in my hands, so needless to say I am very confused as to what I should do.  He said I could do nothing and just come back every 3 months for follow up scans to see if anything shows up, or I could have preventive biochemotherapy.  From what I have read, biochemotherapy is very brutal.  Any advice would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 6
Last reply 11/6/2011 - 3:08pm
Replies by: Anonymous, JerryfromFauq, Bruce in NH, Lisa13, lhaley

There are so many post within the last few weeks from brave warriors dealing with Brain Mets. Is it me, or does anyone else see that too?

My heart & prayers go out to each and everyone of you.

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My father had 3 wide excisions last 2 months. The pathology reports after each excision continued to show Melanoma in situ cells on the margin despite the surgeon expanded the excision areas from standard 5mm to 1cm margin and removed all visible spots.

My father had surgery to remove a deep 4mm primary on his heel 2 years ago. A few little dark spots covering much wider areas than his primary showed up on his heel again early summer this year. Though all the recent biopsy reports showed Melonoma in Situ (which is much less severe than the primary), it seems very challenging for the surgeon to define the surgery border,

We wonder if we need to continue to expand the excision areas until clean margin. My dad has suffered both physically and mentally a lot last 2 months.

Anyone has similar experience with keep getting postive margins? Do Melanoma in situ cells pop up everywhere before they become visible?

 

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Lisa13's picture
Replies 22
Last reply 11/5/2011 - 6:52pm

Was told today I have 2 small mets in my brain.  I know this is devastating, but I would prefer people not to make me feel how horrible this is. Yes, it sucks, but there are people on this board who've had or have brain mets and are still here.

Gamma Knife is not in the cards for me considering 1 of them has already bled. They're both in very good spots in the brain not causing any problems right now.  Because I'd have to wait a month for the bleeding to absorb, they suggested WBR and then Gamma Knife. I know people have been very against this treatment, but I was told that most younger people tolerate this treatment quite well and only 1% of people get severe side effects.  The goal is to start WBR next Wednesday for 10 days in a row and then if they're still there, they'll be able to gamma knife them out of there. Apparently there is just above 80% chance of eliminating the tumours and possible mircroscopic cells. I know nothing is guaranteed, but I'll take these odds at the moment. I know many people have had success from gamma knife (SRS) so WBR should also prove successful. IPI and radiation could continue to keep the brain mets from coming back for a while - you just never know.

Yes, I'll lose all my hair, but they have some pretty divine wigs!  I have read on this board that people who've had brain mets are still hear - some years later, some working, etc, etc. There is always hope and I'm not giving up!  I still feel fantastic and I'm happy that I'll still enjoy life going through radiaion.

Anybody done WBR which kept the mets away for a while??  I know lots of you have had gamma knife which has worked, so that's a great thing!!

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Amy Mason's picture
Replies 3
Last reply 11/7/2011 - 8:49am

Hi,

We are looking for young melanoma survivors/patients in their 20s and 30s to share their personal stories at New England based High Schools and Colleges during our Your Skin Is In program aimed at keeping teens out of tanning beds.  If you are interested in volunteering in our Speaker's Group please contact me at amason@mfne.org or 978-371-5613.  We'd love to have your help.  For more information about our Your Skin Is In program visit http://www.mfne.org/public/events/yourskinisin.php.

Thank you,
Amy

Amy Mason
Event Manager
Melanoma Foundation New England
111 Old Road to Nine Acre Corner, Suite 1005
Concord, MA 01742
p 978-371-5613  f 978-371-0109
email amason@melanomafoundationne.org
web www.melanomafoundationne.org

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Karolina's picture
Replies 23
Last reply 11/14/2011 - 9:19am

hi,

My friend has found out that she has a nodular melanoma. Unfortunately I did not find a lot of info about this unusual type of melanoma... most of the information available is very general and probably more relevant for any other type of melanoma... i am specifically looking for information regarding the prognosis of nodular melanoma, if within a month a lump has grown back on my friend's neck and was 200mm big! however, this 200mm does not refer to how deep it grown back. i don't know how deep it grown back because the doctor who looks after my friend is not very precise!!!

I just want to find out some more details information as to how nodular melanoma needs to be treated and more importantly, what is the suggested timescale for all treatments.

 

I would be very grateful for any additional information.

 

Best to all

 

Karolina

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LynnLuc's picture
Replies 3
Last reply 11/4/2011 - 11:14am

I am sooooooooooooo excited! I am going to go to a session at the 2011 International Symp. in Tampa on Friday...skipping work but hey...I hafta go!!!

I am going to this session thanks to a 'friend' at Moffitt and his connections to the organizational committee...I won't have to pay! The organizational committee person even wrote me an e-mail to confirm it :)    Lynn

10:30am to 12:30pm

Grand Ballroom

JOINT SMR/CENTRES SYMPOSIUM II

“Immunology: From bench to bedside”

Session Chairs: Antoni Ribas, Jeffrey Weber

10:30-10:45Immunobiology of immune checkpoints – Jedd Wolchok

10:45-11:00The microenvironment as a predictor of response – Thomas Gajewski

11:00-11:15PD1 blockade in the treatment of metastatic melanoma – Mario Sznol

11:15-11:30Current and future status of adoptive cellular therapy -Jeffrey Weber

11:30 11:45Combining BRAF inhibitors with immunotherapy – Antoni Ribas

11:45-12:00Combining ipilimumab with other drugs – Steven Hodi

12:00-12:30Panel discussion/Q&A

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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glewis923's picture
Replies 5
Last reply 11/5/2011 - 10:28am

Dear ALL:

Brief history:  Multiple Lung MMel tumors since Sept. 2010.  Started Caboplatin/Taxol/Avistan.  Seemed to hold them stable. Jan. 26th 2011: Multiple brain tumors found after "clonus" rght. leg twitching/siezures.  Had 7 SRS's and WBR all of Feb.(11 to 14 tumors present, all but 2 or three under 1 cm.)

March/April/May had IPI/ Yervoy 4 infusions) May scans show stable.....Aug. scans show some slight decreases in most lung tumors and brain pretty much stable.  Mid-Aug. started Zelboraf.  Oct. 1st scan shows most small lung tumors gone, and the 3 =/- 1 cm. lung tumors regressing (shrinking).  Brain still more or less stable -possible minimal shrinkage on all but one.

QUESTIONS:   Since "something" at least kept me stable (with some shrinkage in lungs)  from March to Aug. , common sense tells me it had to be Yervoy  that kept me that way.  I also give Yervoy some credit for brain being mostly stable, although the immediate SRS and WBR in Feb. kept me alive initiallt at least.   !)  Would re-induction of Yervoy (along with contiuation of Zelboraf) be a reasonable proactive approach?   2)  Would some other or added thing- like temodar be an option?  Being that i know i still have several brain tumors that are most likely "alive", should I seek another round of SRS targets- 3 or so more?  

Any ideas would be greatly appreciated.  I'm very lucky to still be alive now- considering the shear 3 of brain tumors initially found, but now that the Zelbofaf and remnants of Yervoy and radiation have kept me stable or regressed, shouldn't  I become as proactive as possible now and go for a "knockout punch"???

Thanks for listening, and i'm thinking and praying for ALL of You........I read the posts, but feel i can't add much to really help "clinically""  , but hope I help n my quiet "spiritually" .

 

Love ALL, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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ad2424's picture
Replies 6
Last reply 11/6/2011 - 10:47am

Hello everyone

Is anyone on this trial at Yale or Sloan, or does anyone know how it is going?

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NatalieZLea's picture
Replies 6
Last reply 9/23/2012 - 3:14pm

 

Hello all!

I was wondering if anyone could share their experience with Zelboraf.  In particular, I would like anyone's insight/experience with foot calluses and related pain.  My mom was diagnosed with metastatic melanoma last May.  Since then, she has undergone a lung resection, biochemotherapy, and most recently three craniotomies in three months' time.  Currently, mom has six brain tumors, a lesion in her liver and also disease in a lymph node near her pancreas.  Two and a half weeks ago, mom's oncologist at MDAnderson here in Houston started her on Zelboraf.  Since then, she quickly experienced side effects--notably sun sensitivity, a terrible rash all over her body and unbearably painful yellow calluses on the bottoms of her feet.  Her oncologist decided to suspend treatment for a week because mom's rash was so terrible and foot pain intolerable, and we will re-visit everything on Monday.  I was curious whether others have had the same experience as my mom regarding the excruciating foot pain and if so, how long does it last?  What remedies were used to releive the pain?  Also, any other contributions regarding your experience with the drug would be most appreciated. 

Kindest Regards,
Natalie

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NYKaren's picture
Replies 12
Last reply 8/6/2013 - 5:55am

I saw Dr. Wolchuk today, and he said that nothing lit up on the PET scan.  So we looked at the report, and things are looking  better.

To the naked eye, I feel that it looks like it's at least 50% gone, and he agrees.  He already emailed Dr. Sznol (at Yale/New Haven) recommending more IL-2, and Dr. S. is in complete agreement!  Hurray!!!  I honestly cannot believe it.  So now I'm waiting to hear from Yale about timing.

To be completely honest, this will wreak havock with my job,and I MUST keep reminding myself that MY HEALTH COMES FIRST, AND IT'S BETTER TO BE HEALTHY AND JOBLESS THAN DYING WITH A JOB!  I'm the sole bread-winner (my husband has liver disease) so it is somewhat scary, but as I type this, I know that I'd better follow the very same advice I give others.  Run, don't walk, to a treatment that's already making me better.  

So, Charlie, don't kick my ass, I'm just bein' honest here!  

I believe strongly that the IL-2 activated the Aldera, and that combo accounts for the dramatic response on my face.  Dr. Wolchuk and Dr. Halpern (dermatologist  @ Sloan) seem to agree.  I really like those two a lot, both as doctors and as people.

Here's hoping for more good news around here.

karen

Don't Stop Believing

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windy's picture
Replies 2
Last reply 11/4/2011 - 8:01am

My name is Windy, 43 years old and I have been diagnosed as stage 4 met in stomach.

The story begins in 2009. I found a mole on my back and was sent to a derm, who sent me to a surgeon. It was found to be melanoma but completlely contained (it had not broken through into my epidural and had clear margins) fast forward to February of this year. I did not feel like myself, very tired, didn't feel well and run down.

Found my first two tumors on my head in May and was told it was an infection. This happened 2 more times (dx of infection) so I made an appointment with an oncologist (July). Within 7 days she had me diagnosed with sate 4 melanoma contained in the soft tissue and lymph nodes.. Our first attempt at treatment was Silatron. After 5 treatments more and more tumors had appeared. My Oncologist sent me to get an upper endoscopy and found that the cancer had met in my stomach.

I was sent to MD Anderson for treatment. Biochemical treatment was started with IL2 / Interferon / and 4 chemo drugs. I went into the hospital and stayed for 6 days while the medicine was administered. I made it though 2 treatments and found out that I am BRAF positive.(Nov) I will start the drug tonight before bed. 4 pills in the morning and 4 pills at bed (12 hrs apart).

Problems that I encountered during bichemical treatment.....

Dry mouth - used biotene, works great.

Adverse response to drinking water - vomitting; started drinking flavored water.

Dehydration - after my first treatment I ended up in the hospital with dehydration. After the second dose my doctor had fluids delivered to my house for 5 days along with a pump. This was EXTREMELY helpful. Eating soups helped also.

Unquenchable thirst - try eating something sour or salty, sounds stupid but it really works. I used vinegar and salt chips.

 I have lost 40 lbs and most of my muscle tone. I wish that I had forced myself to walk more often during the earlier treatments. The road I have ahead of me is still long, but I can see the light.

Hope that this was helpful.

 

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Charlie S's picture
Replies 17
Last reply 11/6/2011 - 5:36am

No, he's not dead   laugh

He has, however had a sour  turn of events after about a good two year plus run on what was then IPI and is now Yervoy.

Spoke with him just a few minutes ago and he is in the hospital after doing a 5k bike race a month ago to needing a cane and more today.

He has a bunch of neurological events that imploded on him, but his team is all over it in Boston and they are trying to get him put back together.

So, if you would, send up a smoke signal, ring a bell or just otherwise send him some good vibes , I know he would appreciate it !

Cheers,

Charlie S

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