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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Replies by: Charlie S

The Save Your Skin Foundation is desperately looking for basal-cell carcinoma patients to help with a survey this week. If you are interested in participating please contact us at: kfm@saveyourskin.ca.

A community of volunteers determined to eliminate melanoma through research and education, and dedicated to those touched by it.

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NYKaren's picture
Replies 10
Last reply 6/27/2013 - 9:11am
Replies by: Tina D, Owl, Brendan, DeniseK, kylez, jP85, Anonymous, POW, awillett1991, King

so I had my scans yesterday for measurable disease to get me into PD1 trial and to rule out brain mets.

good  news--i've got measurable disease.

bad news--brain mets.  3 around 1 centemeter, and 1 less than 5 mm.  I am scheduled to see Dr. Kondzolka, Director of Stereotactic brain neurosurgery @ NYU.  Tomorrow is consult, Gamma Knife procedure is probably Tuesday.  He used to be at University of Pittsburgh...anyone know of  him?

So I guess I'm stage IV now.

I was crying on the phone when Dr. Pavlick told me. 

I guess I'll post more after I see Dr. K tomorrow...my husband is coming with me...can anyone suggest questions to ask?

I know some of you have had Gamma Knife, can you please share your experience with me?

thanks,

Karen

Don't Stop Believing

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mary in Rhode Island's picture
Replies 4
Last reply 6/27/2013 - 9:41am

Has anyone used an antibiotic with Zelboraf?  I was recently ill and needed an antibiotic. Evidently, with zelboraf there are many that are counterindicated>>>>>due to arrythemias of the heart or qt lenght. I ended up on doxycline.....it worked but I was partially deaf while I used it

What antibiotic have you been successful with while on Z.  I have been on Zelboraf.almost 2 yrs.  Last pet showed there might be a new issue. but that is another issue...thank you for any info.  Regards, Mary

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mandamanda123's picture
Replies 1
Last reply 6/27/2013 - 9:16am
Replies by: Tina D

Wanted to give a quick update on my now 30-year old husband who was diagnosed at stage 3 in Feb 2012, for anyone in a similar situation facing difficult news/choices. My husband opted for no treatment and decided against a clinical trial following an axillary lymph node (complete) dissection in April of 2012. There was no evidence of melanoma in any of the removed material. He had no/unknown primary and the initial mass was macroscopic (very large), possibly consisting of matted lymph nodes, BRAF+. His most recent scans were in November of 2012 (no head scan at that time), no concerns. He has scans in July, so we are holding our breaths because we realize that this is critical timing for recurrence. However, he feels healthy and is thus far happy with his decision to decline further treatment. We will continue to hope and pray that the surgery to remove the initial mass was a complete success and I will update on his scans in July.

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mom3girlsFL's picture
Replies 1
Last reply 6/27/2013 - 9:17am
Replies by: Tina D

Hello fellow warriors,

It's been a long time since I've posted anything...basically, have had no new news to report AMEN!  Although I am not active in posts, I do still visit and read.  MPIP family is always in my prayers!

I remember posting frantically a couple years ago when mel invaded groin lymph nodes, not once but twice.  I really thought some very terrible things although I kept my poker face with family and friends.  This community allowed me to vent my fears and frustrations and I will forever be grateful to the old timers who helped me along.  I continue to pray for the warriors and their families who we have lost and as each day passes I am grateful for another day.  This does not mean mel isn't ALWAYS on my mind, but time does help push it towards the back of daily living.

Keep fighting!

Laurie

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Landslide45's picture
Replies 4
Last reply 6/26/2013 - 1:30am

First time poster.  My Dad (69 yrs) just finished year of Interferon after surgery to remove mel on abdomen and removal of a couple lymph nodes.  He got his post-interferon PET scan results this morning and it apparently lit up with spots on his lungs.  He is scheduled for CT July 18.

Needless to say it has been a rough day and I've had to lay low at work and barricade my door shut because I can't stop tearing up.  The information on these boards--both the medical and the personal--has been tremendously helpful and beneficial to me as we try to deal with the news.

With apologies if these are repeats (I searched and couldn't find much) I have a few specific questions I'd like to ask.  Our family's anxiety will be very high for the next month and while my Dad seems to have a que cera cera attitude I want to know as much as I can about his prognosis.

-- Does anyone know the rate for false positive PET scans showing spots on lungs?  One poster said her doc told her it was as high as 30-40% but I couldn't find much else.

-- Since my Dad finished his Interferon about three weeks ago, he has gradually been feeling better, and his "chemo cough" has gone away.  The doctor told him that this is a very good sign because if the lung spots were melanoma his energy and wellness would "be going downhill, not uphill."  I suspect this is just the doctor trying to stay positive but would like to hear if others have direct experience with respect to this.

-- IF in fact the lung spots prove to be melanoma, am I correct that the next steps are likely surgery and potentially clinical trials?  My Dad said he will not do any Interferon again, but I hope to convince him to try other treatments with less intense side effects.

Thanks to all for any insight.  Best-

Landslide

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Kim_H's picture
Replies 10
Last reply 7/3/2013 - 11:45am

Hello! I've been on Zelboraf for almost 7 months now and the side effects are still happening just as bad as they were when I first started taking the drug! Does anyone know if they'll Ever subside or stop all together?? Thanks for any insight that can be given.

I have cancer, cancer Does Not have ME!

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DeniseK's picture
Replies 5
Last reply 6/27/2013 - 9:23am
Replies by: Tina D, kylez, Brendan, POW, DeniseK

It's me again.......I have a couple questions.  First off has anyone done Z with Ipi?  Right now I"m on full dose Z, there were worries that it stopped working but I've been on full dose now for just over a week and I can feel the sub q on my arm going back down.  I'm also feeling the other side effects, the bottom of my feet are killing me, slight nausea, but not as bad as before, and fatigue.  All of the side effects are just fine with me if it's working again.  I'd rather not talk about hospice right now.  Which really flares me up when I think about it.  My doctor seriously upset me, I'm considering about getting a new Onc, it's a difficult decision because he's been there since day 1. 

Anyway.....I'll be reducing Z back down to 1/2 dose the day I start Ipi.  Just wondering if anyone has done this combo and what to expect.

On another note I was out staining some deck wood yesterday for about 10-15 minutes.  The weather was total over cast, slight sprinkles of rain and I got sunburned!!  We need a protective bubble on Z.  Any help/advice on treating the burn would help too,  I'm coated in Aloe Vera but doesn't seem to help

Thank You

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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flvermonter's picture
Replies 4
Last reply 6/26/2013 - 4:57pm
Replies by: Jim M., flvermonter, POW

Hello,

We had our appointment at Moffitt, but didn't take out my husbands drain.  Still running around 100ccs and needs to be a a rate of 30 ccs in 24hrs.  However, got the report from Dr Zager, and confirmation that the two upcoming appointments (one with Onc for the lung and one with Onc for melanoma) is the game plan.  They will do another PET scan in 3 months to see if any other spots show up, but nothing about other treatments.  My husband's right hand and arm are very swollen and I thought that area along with his right leg and foot are from the same surgery.  Dr Z said no, the arm and hand swelling is from the surgery removing the lymphnodes, but the leg and foot are something else.  So appointment tomorrow am with his Med Dr.  Also an appointment for the lymphedema to be a glove or arm cover to help with the swelling.

 

He is the path report from the surgery.   Subscapularis nodule, greater than 50% of the tumor is necrotic.  Lymph node level 1 and 2 right axillary contents with metastic melanoma in 3 of the 13 nodes.   Subscapularis node no. 2 had 4 of 4 nodes with metastic melanoma.  Soft tissue Latissimus tissue, no evidence of malignancy.  Axillary vein nodule, melanoma in 1 of 1.  Additiona latissimus tissue 1 of 1 metastatic.  Level 3 right axilla, 9 of 10 metastatic melanoma.

all of that sounds terrible.  Help me understand this and the treatment.  Will radiation to the melanoma area kill any cancer surrounding the surgical site?  I believe and will know after meeting with lung onc, they are comfortable they can manage reradicate the lung cancer. Any one had any radiation instead of infusion for melanoma?  How did it work?  My husband has been blessed with no metastica to the brain to date.

 

Thanks for your help and please know that it is appreciated.  PS I asked about clear margins and Dr Z said he took everything he could.  What does that mean, that no clear margins?

 

Thanks, Mary

Hugs to all, patients and care givers.

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randallgford's picture
Replies 4
Last reply 6/25/2013 - 3:10pm

What is the thinking of the difference between these drugs? If someone

started failing on Zelboraf, would dabranefib be tried? I know its newly

approved, just wondered if it is considered much different from Z. Thanks, Vicki

wife of Randall, successfully on Zelboraf for 9 weeks.

Never give up!

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Gette's picture
Replies 1
Last reply 6/27/2013 - 9:25am
Replies by: Tina D

wow, this site cured me of insanity back in 2001. So happy to see it still going strong.

WLE & SNB in 2001.  Looking at a subdermal nasty black mole that is making me nervous.  OF COURSE I will be getting it removed within days & biopsied but a question for those who can offer some help: I was told that subdermal moles are usually not melanoma...is this typical? 

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Tennisgrl's picture
Replies 1
Last reply 6/24/2013 - 4:52pm
Replies by: POW

Does none have available treatment after metastasis of brain is found?

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Does none have available treatment after metastasis of brain is found?

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kim007's picture
Replies 2
Last reply 9/21/2014 - 12:35am
Replies by: pipes, Brendan

My husband was diagnosed with Stage 3 melanoma 2 years ago.  He has tried several treatments such as IL-2, Anti-PD1, and Zelboraf. Now he has been on Yervoy for 6 months and is responding positively. We are so relieved to have had this positive break through.  We are considering expanding our family (we already have one daughter so we know it will be a lot of work) . The doctors indicated that because Yerovy is an immunotherapy, and the Zelboraf should be out of his system, his sperm and fertility should be okay to move forward. Of course, we are still nervous since these are new drugs and there hasn't been long-term research done on the side effects. Does anyone have any experience with this? What were your results?

I appreciate your feedback on your personal experiences.

Kim

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Greg - Kyles dad's picture
Replies 5
Last reply 6/27/2013 - 9:30am

I have not been on this board in some time - but always think of the daily struggles people go through with this beast.  Thought I would post something to give some hope.  Proud of my son working through his challenges.   http://hamptonroads.com/2013/06/chesapeake-weightlifter-rebounds-skin-cancer

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