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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kylez's picture
Replies 1
Last reply 1/16/2015 - 1:16am
Replies by: kylez
Just read about this new phase III trial of 'Polynomal' vaccine, so-named because it includes several hundred antigens from 3 different melanoma cell lines. They say they will be enrolling 1100 melanoma patients.

It's up on clinicaltrials.gov, "A Multicenter, Double-blind, Placebo-controlled, Adaptive Phase 3 Trial of POL-103A Polyvalent Melanoma Vaccine in Post-resection Melanoma Patients With a High Risk of Recurrence".

 

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Vicki88's picture
Replies 7
Last reply 1/16/2015 - 12:12am

My husband was recently diagnosed by a shaved biopsy from a spot on his nose.  He also has a streak under his fingernail that has not been addressed.

Upon the diagnose of melanoma, he was referred to a dermatologist specializing is Moh's surgery who is recommending removal with plastic surgery repair the following day.

My question is that, with no full body exam done by either dermatologist, is the normal proticol?

Also, since we failed to point out the streak under his fingernail, is there possibly more going on and if so, is seeing a specialist with Moh's surgery enough to address a more systemic possiblity?  He did do a physical exam by feeling each of his lymph nodes.  Is this enough?

I read that some melanoma's, if caught early and by their location, were less likely to spread.  Only, I do not know where these types of melanoma's are, nor what types of tests are needed to determine if they have or have not spread.

It is just over an hour to see these doctor's and would be the same amount of time to go on to MD Anderson. 

Should we go on to MD Anderson to have the whole body addressed?

Thank you for answering...Vicki88

 

Vicki88

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TSchulz's picture
Replies 9
Last reply 1/15/2015 - 11:37pm

It has been a long time since I have posted here but my life has been touched by people dealing with melanoma several times in recent weeks and I thought I'd share my status.   

I received the "standard" protocol of TIL at NIH in May of 2012.  I had an amazing response to treatment and was declared NED about a year after that.  My wonderful NED status has continued without a bump in the road.  Because things had progressed so well following treatment, my wife and I (being encouraged by my doctors saying that I should expect to be around awhile) decided to try to a second child.  We welcomed a beautiful baby boy into our family in early November. 

Almost every day I think about my time dealing with melanoma -along with all those dealing with it today.  I wish you all the best year in whatever phase you are in: Having it sucks, loving someone who has it sucks and getting over having it isn't easy either.  And to all those who are supporting someone out there - you rock! 

Happy 2015.

Troy

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/15/2015 - 7:11pm
Replies by: Anonymous, Bubbles, arthurjedi007

My husband took Dabrafanib and Mekinist for 6 weeks with no problem and excellent results. Then he developed fevers. They took him off the Mekinist as a result.  They took him off of Dabrafanib after he developed eye inflammation.  Now over two months later, he was instructed to try the Dabrafanib again and with in 24 hours he is starting to get fevers again.  He is not to take prednisone, so any other way to stop fevers? Otherwise, he will havae to stop dabra probably.

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I've been taking 5mg oxycodone pills for a couple months now for the pain. That was via my medical oncologist.

Today my radiation oncologist prescribed this Fentanyl patch.

i assume it won't hurt the affectiveness of Keytruda Pd1?

Any other major concerns I should have? It seems like the side affects I've read are similar to oxycodone. But since it is a skin patch and I have melanoma I'm like huh is this really what I should be doing.

Thanks.

Artie

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rick1981's picture
Replies 6
Last reply 1/15/2015 - 6:51am
Replies by: Wader, Bubbles, Mat, Anonymous, democat

(I'm not basing the combo with my last two topics, these just are new releases that are hopefully helping others)

New research on the combo:

http://www.eurekalert.org/pub_releases/2015-01/hlmc-mrd011215.php

Moffitt Cancer Center researchers have discovered a mechanism that leads to resistance to targeted therapy in melanoma patients and are investigating strategies to counteract it. Targeted biological therapy can reduce toxicity and improve outcomes for many cancer patients, when compared to the adverse effects of standard chemotherapeutic drugs. However, patients often develop resistance to these targeted therapies, resulting in more aggressive cells that can spread to other sites or cause regrowth of primary tumors.

Moffitt researchers found that patients who are on B-Raf inhibitor drugs develop more new metastases than patients who are on standard chemotherapy.

They found that melanoma cells that are resistant to B-Raf inhibitors tend to be more aggressive and invasive, thereby allowing the tumor to spread to a new organ site.

My wife has had a good benefit from the combo when she urgently needed them to work. However, she came out of the treatment (when resistance occured) with new and aggressively spreading mets - so although N=1, this does sound familiar and makes me regret in hindsight that we didn't move to immonutherapie before resistance occured.

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Jsneathen21's picture
Replies 10
Last reply 1/15/2015 - 4:59am
Replies by: Jsneathen21, mwconklin, Anonymous, kpcollins31, JoshF

Just giving everyone an up date. I am doing ok besides the pain. The graft I feel is more painful then the sentinel node biopsy is.pain meds are not really helping with the pain for the graft...i am having to take phenogren for the nausea (talwin)the pain med makes me sick anyways thanks every one for your support❤

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StephyD83's picture
Replies 8
Last reply 1/15/2015 - 3:05am

Hi everyone-

I had posted last week regarding new symptoms that I have been having as far as having a foggy brain & a headache that has lasted for 5 + days. I went to the Dr. yesterday & she performed a bunch of test & said that I failed a few & she needed to order a MRI STAT to rule out Brain Mets. I am very concerned at this point.

How likely/possible would it be that it has treaveled to my brain? History-I was Misdiagionised 2 years ago I actually had Stage 1A with margins involved that was not re-excised for 1 1/2 years then I had only 5mm margins removed in March 2014 & to date I have not had the other surgury for the additional 5mm yet.

Any advise would be great.

 

Thanks!
Stephanie

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marissav's picture
Replies 2
Last reply 1/14/2015 - 11:00pm
Replies by: SABKLYN, JustMeInCA

On Christmas Eve I was given the biopsy results of a mole that I had removed.  The nurse practitioner that had removed the mole came into the room and said, bad news, it's melanoma.   I had anticipated these results and had done some research.  My head was spinning but I remembered to asked the stage.  She said Stage IV.   I asked her how she knew it had spread and she said, it's Clarks Level IV, which is Stage IV.  My world turned up side down at that very moment.  My husband and I went home to tell my three girls, elderly parents and friends the devasting news.   But something didn't feel right...

I got on the internet and began searching.   Thankfully I found this forum and was able to get reassurance from several people that the diagnosis was premature at best.  Though still sick with worry, I managed to get through the holidays feeling more confident that I was stage I or II based on the pathology report.

Since then I have met with an oncologist, had a wide exicision with sentinel node biopsy and MRI.  Thankfully the MRI was clear and so were the lymph nodes.   I am officially stage 1b.

I have sent a letter to my dermatologist to inform him of the mistake that his nurse practitioner made that day.   My hope is that no one else will go through the pain and distress of a misdiagnosis from her.   I would also like an apology but I realize that probably won't happen.

I just want to thank everyone who took the time to reply to my post.   That reassurance was the best present I could have received that Christimas.   I am so thankful this forum is here to answer my many questions.  I am sure there will be many more questions as time goes by and I am happy to have this support system.

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Lauri England's picture
Replies 6
Last reply 1/14/2015 - 12:29pm

I have been NED for 4 and a half years. On Thanksgiving I noticed a bebe size lump on left side of my neck.   I gave it a week and it doubled in size.  I went to my family doctor and she refered me right on to my oncologist.  I had a CT scan December 9th 2014 and got results back December 16th.  I have a 4 inch mass in the upper part of my left lung and a 10mm size mass right behind my liver.  Doctor right now is not sure of this is spread of Melanoma or another type of cancer.  Next week I will be going in for PET scan and diopsy to confirm.  Not sure what is going to happen next.  Very scared once again.  I beat this once and I feel in my heart I can do it again...

Don't sweat the small stuff. There are bigger fish to fry!

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misenber's picture
Replies 4
Last reply 1/14/2015 - 9:48am
Replies by: misenber, Anonymous, Janner

Last week I was told that the mole I had removed from my back was melanoma and is Clarks Level 2, less than 1 mm.  I was to havethe spot removed tomorrow, but the surgeon called and told me they have to postpone because after speaking with the pathologist, he is going to have to remove a lymph node and test it and wouldn't have the eqipment available for another week.  I am, of course distraught, but also very confused. I researched the Clarks Level 2, but can't coordinate it to the Melanoma staging, which seems to give more specific information about treatment, seriusness, prognosis, etc. I have not yet seen an oncologist, I am dealing with a general surgeon who will refer me to an oncologist after the surgery. I am 63 years old and this is my first diagnosis of melanoma. Can someone point me to a good place to get straightforward information that is easy to understand?

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Jsneathen21's picture
Replies 8
Last reply 1/14/2015 - 6:10am

Just asking for prayers today I have my sentinel node biopsy and my skin graft after they remove the melanoma. Thanks everyone

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trampoo's picture
Replies 2
Last reply 1/14/2015 - 5:31am
Replies by: JustMeInCA, democat

Encarna, regentaba una pequeña tienda. Era una tienda, de venta de piezas para reparación de electrodomésticos. No era una tienda muy concurrida, principalmente concurrida por personas que arreglaban los electrodomésticos y poco más, pero le daba para vivir y para cuando necesitaba operarios en la tienda, para contratarlos.

Tenía 2 hijos, aunque ambos ya se habían establecido con sus novias en otros lados, lo que hacía que viviese sola y de vez en cuando pudiese ir de ligue alguna que otra noche, a por algún hombre joven o mayor, eso no le importaba.

Encarna era muy guapa. Tenía unos 50 años, muy pasados. Vestía siempre arreglada, con ropa, de vez en cuando ajustada, lo que a veces le dejaba marcando las carnes que le habían entrado. Tenía unos pechos, de tamaño medio, algo grandes, pero caídos, aunque no mucho.

En su tienda, eventualmente trabajaba un jóven. Hacía de vez en cuando trabajos, repartiendo publicidad, o cuando ella, iba a veces a ver a sus hijos, se quedaba al cargo de la tienda y para cuando necesitaba ayuda para hacer los inventarios. A él le venían bien, unos dineros de vez en cuando, no era mucho, pero aún le daba para tener un poco de dinero fresco, que siempre venía bien. Además a ella, también le gustaba tener a gente trabajando con ella, ya que ver a alguien joven con ella, no le molestaba demasiado.

Los días, pasaban, pero hasta que llegó el día, que cambiaría todo.

Un día de trabajo, el estaba colocando unas cajas en el pequeño almacén de la tienda, mientras ella, pasó al lado. Ella le rozó el culo, aunque el no lo notó, ya que estaba, bastante metido en su trabajo ordenando las cosas, ya que quería irse pronto.

A ella le gustó. Le gustó el poder, tocar un culo joven. Pero tampoco le dio mucha importancia.

Al día siguiente, ella estaba en el pequeño baño de la tienda. Se estaba cambiando la blusa que tenía, ya que la había manchado un poco. En ese momento, cuando ella, estaba en sujetador; un precioso sujetador rojo, de lencería fina, el chico entró por la puerta. Él no sabía que ella, estaba en el baño y ella tampoco escuchó la puerta, hasta que se encontró con el chico mirando con cara boquiabierta y ella, ajustándose el sujetador. Pidió disculpas, aunque a ella le gustó ver como le miraban, ya que a pesar de su edad, estaba muy buena.

Rápidamente lo llamó. Él le volvió a pedir perdón. Se sentía mal, por no haber llamado a la puerta y por verla a ella. Ella le dijo que no pasaba nada, que le podría haber pasado a ella, cuando él estuviese dentro. Sin embargo, le pidió una cosa, que si alguna vez volvía a pasar que se le quedase mirando, ya que a ella le gustaba. El chico, no sabía que decir, aunque tampoco le importaba, ya que por aquellas, épocas estaba pasando un mal tiempo sexual y ver unos pechos, aunque fueran algo caídos, tampoco le iba a decir que no.

Los días pasaron, y él tuvo que ir al baño a cambiar el agua al canario. Ella sabía que él estaba en el baño, por lo que entró sin llamar, para cojerlo en el momento. Él se quedó con cara de tonto, al verla.

Rápidamente sus manos, fueron hacia su soldado, que estaba comenzando a meterse en el pantalón de nuevo. Se la cogió con las manos, y comenzó a chuparla. La comenzó a chupar, suavemente, como quien come un helado. Chupadas suaves, lametones, sobre sus testículos y chupadas fuertes. Se notaba que ella, lo necesitaba, ya que desde que había quedado viuda, hacía unos años, a penas había podido saborear de nuevo el sexo. Él no decía nada. Solo disfrutaba. De vez en cuando, agarraba la cabeza de ella, para ir empujando la cabeza de ella, para que la comiera hasta el fondo. El no tuvo más remedio que correrse. Se corrió en el water, aunque a ella, no le importaría que se corriera sobre su boca.

En cuanto acabó, sus el comenzó a quitarse la ropa, mientras ella, se iba quitando su ropa. Se quedaron desnudos, mientras el la iba besando. Le iba besando su cuello, con olor a perfume de fresa e iba bajando poco a poco, hasta llegar a sus pechos. Estaban en su punto. Estaban suaves, y con los pezones, empezando a ponerse erectos. Sin embargo seguía bajando. Le iba besando, su pequeña tripa, hasta que llegó a su tesoro. Era algo peludo, aunque a él no le importaba demasiado.

Ella le cogío su soldado y la introdujo en su tesoro, mientras poco a poco, ella comenzaba a gemir y él le comenzaba a dar fuerte. Le gustaba eso, de sentir algo joven en su interior. Ella cerraba los ojos, pero él le sabía dar bien. Le daba justo en el lugar exacto, lo que provocó que en el suelo, donde estaban haciéndolo, no les importara lo frío que estaba, ya que con lo calientes que estaban los dos, el sudor salía a chorros.

Estuvieron durante largo rato, pero él no lo pudo aguantar y tuvo que correrse. Esta vez, ella le pidió que se corriera dentro, ya que le daba igual, ya que era estéril. Él se corrió dentro de ella, hasta quedar ambos exhaustos, de todo lo que habían echo.

Ella le pidió una última cosa, que le diese por el culo. A él le daba mucho miedo, ya que nunca había dado por el culo a ninguna mujer. Ella le dijo, que si tenía miedo, que se pusiese un condón y así lo hizo.

Comenzó dándole, despacio, poco a poco, mientras ella le decía que escupiera un poco sobre su ano, para lubricar la entrada. Así lo hizo. Empezó poco a poco, mientras con sus manos, iba agarrándose a sus pechos. Los agarraba con fuerza, mientras que le seguía dando por el culo, pero cada vez más fuerte, pero llegó un momento en el que tuvo que parar, porque a ambos a penas le quedaban fuerzas. Había pasado más de media hora desde que habían comenzado. Ya estaba anocheciendo y ya tenían que haber cerrado, pero lo único que hicieron fue estar sobre el frío suelo, mirando al techo, intentando descansar de todo el trabajo que habían hecho.

Lo que habían acabado de hacer, era acoso sexual en el trabajo, pero a ninguno de los dos le importaba, por lo bien que lo habían pasado y porque de vez en cuando, lo hacían. No cabe decir, que el chico dejó de ser trabajador eventual, para trabajar más a menudo en la tienda.

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http://www.ideastap.com/Forum/Thread/6436ce04-19a2-48cf-8886-a41f01267311
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http://forum.sp.parallels.com/members/toni1.170459/
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