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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mama1960's picture
Replies 2
Last reply 6/27/2013 - 9:51am
Replies by: Tina D, POW

Bone scan a month ago showed mets in bone. Started Zelbroff. Have had fractures in both arms and right groin. Doc says cancer is too far ahead to count on Zel. Had another bone scan Tuesday, lots more mets. Going on five days of intense chemo here in the hospital starting tomorrow. Drugs are Velban, DTIC, and Platinol. Says it was created at MD Anderson. Anyone with experience?

It is what it is.

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Richard_K's picture
Replies 7
Last reply 6/27/2013 - 9:48am

Apologies for being absent for the past month, I had serious computer and e-mail problems.  As to Zelboraf, I’m still on it and closing in on forty months.  Only real problems are sun sensitivity and some discomfort in left leg and foot.  Bilirubin goes up and down but if I am sure to keep hydrated, it seems to be under control.

My wife and I just returned from Barcelona Spain where I was invited to speak about my Zelboraf experience at the Roche Global Research and Early Development conference; quite a thrill.

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Replies by: Tina D, LindaR, Anonymous, Linny, DeniseK

Just this week I was diagnosed with amelanotic melanoma. All I know right now is that my tumor is 1.15 with no clean margins and a level 4. I am expecting to have surgery this week. As I try to wrap my mind around all of this, the information online is overwhelming. I just found this site and already it is helpful. The tumor is on my face near my ear. The plastic surgeon has told me part of my ear will need to be removed. This is so hard. Can anyone help me understand if amelanotic melanoma is more aggressive than other types? Has anyone had surgery on their face? Of course, I am afraid of how my face will look after surgery but mostly afraid of what the SLB will show. This is the first time I have ever posted on any site and it feel strange.

Linda

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Ali's picture
Replies 16
Last reply 6/27/2013 - 9:45am

I regret not being active on the board for a while.  Good to see you guys still fighting hard.

One year ago today they found 25 tumors in my brain.  Lots more around the body.  I had just finished IL-2.  We did IPI and Temodar.  I only got one dose of IPI, due to colitis.  It cleared my brain by the 12 week scans.

My brain is still clean.  We found a few new, very small tumors this spring.  A couple near my adrenal gland continued to grow (even after we radiated them this January).  They started hurting.  Pain pills kind of hurting.  We found a PD-1 trial I qualified for (Moffitt just started one for those of us with dose-limiting, stage 3 toxicities from IPI).  Within days of my first dose I was off my pain pills and could feel a difference in my axilla tumors.

I had my third dose this week.  I feel great.  I feel so very lucky to still be be here and still be fighting this disease.  I am so grateful for the chance to try antiPD-1.  My prayer from the beginning was that I would be able to try everything.  To not let my kids wonder if something else would have worked.  It is always humbling to have a prayer answered.

I hope and pray for the best outcomes for my fellow warriors.  This has been a great year for melanoma research, let's see that translate into a good year for us with the disease as well!!  Keep up the good fight!

Ali

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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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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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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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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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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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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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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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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

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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!

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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!

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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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