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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JoshF's picture
Replies 15
Last reply 1/17/2015 - 1:46pm

Got the call from my oncologist. Path didn't have all testing done but confirmed nodule in scar tissue is indeed melanoma with size <5mm and possibly lymph tissue;no other details. I've been going crazy so she called to see where they were in testing.

Pet Scan scheduled Wednesday, she wants more healing on cheek. I'm so disappointed... I really thought I was responder to ipi and/or IL2. I did Prometheus Labs trial combo of the two therapies. I know I have tests coming up but what do I do? What if it's just local recurrence? If it spread do I just go to PD-1? I'm sure that's what onc will want to do...I do see melanoma specialist but would seeing one with national reputation be better? Who would you all recommend? Wolchok...Weber etc? I've gotten so much support and advice from this forum...it's just hard when you're stuck in the unknown for 3rd time. Thanks to all....

Josh

Let's work for better treatments....for a cure!!!!

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StephyD83's picture
Replies 15
Last reply 1/17/2015 - 10:41pm

Hi everyone-

As soon as I wa on my way home from the scan I received the results. They found 2 masses but they are on my Pituitary gland. It says it is causing a bulge & a tilt to the stalk.

Has onyone ever heard of this before?

 

Thanks!
Stephanie

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Jsneathen21's picture
Replies 2
Last reply 1/16/2015 - 1:08pm
Replies by: mwconklin, StephyD83

I got my drain removed today! Yay! As far as the pathologist results basically if I call on Monday and they have my results that will be a good thing. If I call on Monday and they don't have my results that is not a good thing he told me that if they find anything unusual it will have to be sent off to Raymond Barnhill the pathologist who diagnosed me originally at UCLA ... So lets hope Raymond Barnhill is wrong about all of this ... Prayers for a good outcome no spreading !

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jualonso's picture
Replies 11
Last reply 1/18/2015 - 6:18pm

Hi folks,

Im now after fourth dose of ipi, and will go to pd1 if it does not work. In this moment im thinking of a possible future, and i would like to know the steps i have to follow to get TIL treatment at NIH. Im spanish so i dont really know even if it is possible.

Every comment will be welcome.

Thanks

Juan

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buffcody's picture
Replies 5
Last reply 1/17/2015 - 12:54pm

Many of us regulars know Joe Stevenson by his forum signature, Joey. Joey has been on the Forum many times past but not for a couple of months  I had been worried about him and was happy to receive a personal email two days ago. I was not happy, though, to see what he has been going through during his silence. He has not been up to posting here but gave me the go ahead to let people know what's going on. 

This will be a very condensed and inadequate version of what he wrote me. In brief, he has been quite ill following a second craniotomy last month. The surgery itself went well, but the complication of a deep vein thromobosis followed, becoming a pulmonary embolism that sent him to the ICU. With the addition of other measures, within a week or so he was able to be sent to a rehabilitation hospital for physical and occupational therapy directed to major problems with his left side and leg that had been present for 6 months and worsened after the surgery, preventing free movement without great pain. Unfortunately, after a week of seeming progress, the pain suddenly reached intolerable proportions; and he had to be taken to emergency in the hospital where he had been operated on. 

The diagnosis found internal bleeding into the back of his abdomen, probably made worse by anticoagulants he had been on. For a week or so he was in and out of consciousness and was in significant danger of death. Thankfully, he has experienced enough recovery now to be able to leave ICU and the hospital and return to the rehabilitation hospital. His current pain levels and physical capacities in general have worsened compared to those on his previous stay in this hospital, but there are still more questions than answers about the cause of what occurred and his future path. There has been no recurrence of the melanoma. Most all the rest of what he has been able to share with me is still in the state of "to be determined." He is very grateful for your thoughts and prayers and continues to appreciate them and will return to communicating himself when he is able. 

I hope my summary of Joey's own communication to me is both accurate and comprehensive enough. Having had a craniotomy myself in November I realize how fortunate I am that my own recovery has been so uncomplicated. Joey's story reminds me of my surgeon assuring me before the surgery that things should go very well but his quickly following this statement up with the addition of "But it is brain surgery." We all walk a path that has some degree of darkness. Even without a recurrence of the cancer itself, there are other obstacles we can stumble on. Many of the procedures we choose to have we choose because not choosing to keep walking is really not a choice. Living as a melanoma "survivor" is not for the weak, but we are still very grateful for waking up to life every morning even to face sometimes very difficult days.

Frank

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rick1981's picture
Replies 21
Last reply 1/26/2015 - 7:01am

5 02:00

Hi,
My wife has stage iv melanoma and is on Pembrolizumab. Scans in december showed progression with nee tumors in her bones around her hip. No brain Activity on PET/CT.
She got her third IV yesterday and felt OK aside from Some pain around the breast bone. Blood OK, felt really good.
This night I woke up as she seemed to be choking. Called 911 and she is now in hospital. Had 3 attacks that look like seizure : epilepsy. Scan in an hour. 
Any ideas? Questions to ask?
Thanks

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marrkwalker25's picture
Replies 1
Last reply 1/16/2015 - 5:30pm
Replies by: Anonymous

Dr. Frank Diet - Why so popular?

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Rocco's picture
Replies 7
Last reply 1/17/2015 - 3:44pm

Yesterday's Onc visit was great.  Scan results from last week show I'm still NED and I was given OK to move to an ANNUAL scanning frequency....this is a milestone!

Hang in there everyone!

Rocco, Stage IV since 2005; Ipi responder

Luke 1:37

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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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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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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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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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mwconklin's picture
Replies 3
Last reply 1/13/2015 - 10:56pm
Replies by: Janner, mwconklin

Hi, does anyone know if a mitotic index of 9 is a very high number?  Thanks

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