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
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

Login or register to post replies.

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

Login or register to post replies.

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? 

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

Littlea41's picture
Replies 3
Last reply 6/27/2013 - 12:32am
Replies by: Littlea41, Anonymous, Janner

Hello.

 

I was diagnosed with melanoma in-situ on my wrist in march and had it removed as well as the local wide- everything came back clean.

2 weeks ago I had 2 spots removed from my chest.  One came back OK and the other one came back as the following:

Pathological Diagnosis: Atypical Compound Melanocylic Nevus with Architectural Disorder and Mild cylologic Atypia, (Dysplastic Nevus), see comments.

Comments: Margins involved. 

Gross Description: Received in 10% formalin is a shave biopsy measuring .6 cm X .4 cm with a pigmented area measuring .1 cm X .1 cm.

The doctor doesn't seem to think this is worth doing the local wide on.  I'm concerned because the margins are involved and I'm already a Melanoma patient.  My original melanoma didn't look like a typical melanoma.  in fact, the doctor didn't even want to remove it but I insisted.  I have another spot on my back that is darker then any other mole on my body-- again, she didn't want to take that either.  This is a new doctor I am seeing (not the one who removed the melanoma).

What are your thoughts on getting a second opinion or- having the local wide done on the mild nevus?  I've read that some reports have come back OK but when reviewed by another pathologist, they have concluded melanoma. 

 

Thanks for your time

Login or register to post replies.

I have created a petition on the whitehouse.gov website asking that tanning beds be regulated as a Class II medical device and be banned for use by minors. As someone who has lost a dear relative to melanoma, I strongly believe that the next generation should be legally protected from these devices, as the dangers are not known well enough.

Please "sign" my petition here:

http://wh.gov/lOFg4

It needs 100 signatures before it can be viewed on the website and at 100,000 the White House will issue an official response. Let's show our leaders how seriously we take melanoma protection!

Login or register to post replies.

I have created a petition on the whitehouse.gov website asking that tanning beds be regulated as a Class II medical device and be banned for use by minors. As someone who has lost a dear relative to melanoma, I strongly believe that the next generation should be legally protected from these devices, as the dangers are not known well enough.

Please "sign" my petition here:

http://wh.gov/lOFg4

It needs 100 signatures before it can be viewed on the website and at 100,000 the White House will issue an official response. Let's show our leaders how seriously we take melanoma protection!

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

Tony_T's picture
Replies 2
Last reply 6/26/2013 - 2:35pm
Replies by: parkmk80, Janner

Came across this site with a Google search and am quite impressed with it. I am hoping someone can help me decipher what seems to be different information regarding dysplastic nevi. I am 53, male. About 3 years ago I went for a derm follow up on my wife's request to have a "suspicious" mole looked at. The dermatologist told me at that time not to worry. This asymmetrical mole has been there for many years, I would say maybe 10 and has transformed very little to my untrained eye over the years. Has it changed, yes, but as measured by years and not months. Recently, my GP referred me to have this looked at again, since she was unaware of my previous dermatology assessment, so i went to the same dermatologist. It is the only asymmetric mole on my body, right abdomen. I would say I have less than 50 moles all totaled, so is this one the ugly duckling? The resident suggested I have it removed. The senior derm gave me the option of 6 months watchful waiting. I opted for the surgery. Thing is, during the procedure, I asked some questions and the resident MD said there was about a 30% chance that this could be a melanoma, and depending on the pathology report, different options would exist, one including lymph node removal. I am an extremely anxious person, especially for medical issues and of course this statement floored me. When I googled the topic I read in some places that up to 10% of the populations have these dysplastic nevi. I imagine that if 30% of 10% of the population developed melanoma, the incidence would be much higher. Other facts about me, no melanoma in my family (mom had basal cell from sun worshipping) she is 80 and still kicking, the mole measured 6mm x 6mm, it is the only one on my body, I am Mediterranean descent so no fair complexion, freckles, blue eyes etc. I am worried sick about the possibility that this event could lead to a melanoma diagnosis. Any help from anyone who is familiar and up to date with what the true reality is would be greatly appreciated. I am really trying to understand and put into perspective how probable is it that I am a melanoa patient based on this. The anxiety is getting the better of me and i will not get my results for several weeks still

Thanks so much to everyone who takes the time to answer

Tony

Login or register to post replies.

NYKaren's picture
Replies 13
Last reply 6/26/2013 - 11:33am

Yesterday I met Dr. Anna Pavlick. Wow. What a lovely, smart powerhouse of a woman. If all goes well, I should start the Merck phase 2 PD1 trial at NYU. Dr. Wolchok sent me to her when Merck abruptly closed remaining seats of the phase 1 trial @ Sloan. Dr. P feels that the brand new tumor in my ear should show up as measurable disease on the MRI I will be having on 6/25, the end of the 28-day wash-out period from Zel. There are a few more mets that should show up as well. I wished for 1 to be large enough, now I've got a whole harvest going here, of course making me worry even more... What if I get the chemo arm, what if the PD1 doesn't work, blah blah. You get the picture. But we both agreed that I'll still have the 2 new GSK drugs & hopefully still Zel in my back pocket.
I think that's about it for now, I'll keep you posted.
Karen

Don't Stop Believing

Login or register to post replies.

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

Login or register to post replies.

Pages