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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triciad's picture
Replies 4
Last reply 5/3/2012 - 6:33am

Hi Everyone,

Just a quick question...what makes an oncologist look for brain mets?  Is there anything that shows up in the blood?  I've been sent for a brain MRI, so I'm just wondering if he saw something that he didn't tell me.

Thanks for any help about this.

As always...continue the fight!

Tricia

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alicia's picture
Replies 5
Last reply 5/6/2012 - 12:20am

Hello Friends, Just wanted to thank you for your prayers and support.  I was very anxious about this  PET scan I had last friday, especially after watching my best friend pass away from melanoma just two months ago.  we started out at the same stage so it was very hard and I was nervous that it could be spreading inside of me.  Anyways thankfully my PET scan showed" no hypermetabolic uptake in the lung nodule or hilar lymph node at this time."  I'm so super excited about this news and just wanted to share it with the rest of you:-)  I go today for surgery to do a 5mm wide excision of a severly atypical mole (this is my 5th I think atypical area having excised) that wasn't fully excised during biopsy and i'm a little nervous about that but very thankful after today I don't go back to the dr until June:-)  Much love to you all,

 

Alicia B. stage III(+SNB) interferon, 3 primary melanomas (stage 1, stage 2, and stage 3) and 5 atypical lesions.......but who's counting;-)

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rjcravens's picture
Replies 4
Last reply 5/2/2012 - 10:02pm

Okay, i just finished my one year of interferon treatment on friday, even though i cussed, screamed, cried and laughed each day i had to do the injections and threatens to quit them. (My poor husband, as i am yelling this is my last dose, i cant do this anymore, he replies okay honey whatever you decide, knowing i wouuldnt quit. I go make on May 25th for my pet scan / mri/ restaging. The questions i have:

I feel helpless. I am driving my anxiety to a new level because i have lost the feeling of control that i had over preventing this beast from coming back. (Not that i ever really had controll) but i feel like i am just watch and wait mode and i am not surei can handle that

I am having these headaches on top of my head to back of my head for about three days, it that expected.

Last thing, about a month ago i went to endocronologist and he said i only have half of thyroid and diagnosed me with Hasimotos thyroid. Started me on 25 of synthroid. I feel like a walking waterbottle. I feel so bloated and constantly hungery no matter how much i eat. I also get winded quickly. Almost like signs and symptoms of congested heart failure. I am 35, is this what i am going to feel like the rest of my life?

Thank you for all your support.
Rachel

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benp's picture
Replies 8
Last reply 5/14/2012 - 7:23pm

Does anyone know if there is an optiomal ordering of these two therapies?

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bostonguy's picture
Replies 22
Last reply 5/9/2012 - 12:56am

I was originally diagnosed wtih a melanoma on my left chest that wast 1.5mm thick, without ulceration and a mitotic rate of 4/mm2.  I had the wide area excision and SLB. One of the 5 lymph nodes biopsied showed two foci of .27mm and .3mm.  

 

I am now scheduled for an MRI and and PET scan, as well as surgery to remove the remaining lymph nodes in the affected area.

 

I'm pretty freaked out and don't know what to expect.  I'd love to hear people's experiences.

 

Thanks for any assistance

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Snickers60's picture
Replies 6
Last reply 5/5/2012 - 8:31pm

Someone/anyone tell me about your joint pain with ZEL ?    Wayne got up this morning (day 8 on Zelboraf) and could barely move.   The pain has gotten quite intense as the day has gone on.

 

What do you do for it ?     Pain patches, pain meds, etc ?    Any secrets or alternative meds that helps ?

 

THANKS AGAIN,

Nancy (devoted wife of Warrior Wayne)

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Sherron's picture
Replies 1
Last reply 5/1/2012 - 5:11pm
Replies by: Snickers60

Hi Everyone,

It's been a while since I have been back.  I will be walking in the Melanoma Walk in Dallas, Texas on May 5th in memory of my husband Jim Clevenger, and for ALL OF YOU WARRIORS still fighting.  3.3 miles around Bachman Lake.  It's a beautiful walk for a wonderful cause...Wish me well.

Take Care,

Sherron,   wife to Jim FOREVER

Profile under Sherron

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rlowe's picture
Replies 3
Last reply 4/30/2012 - 10:58pm

I have been stalking the board for 3 months now, getting much needed encouragement and info from my fellow warriors. I just received a troubling report from my last CT scans and would like some help deciphering the verbiage. a little background first: my first scan in July of 2011 showed a single 6mm nodule in my lung. Docs said probably nothing, just monitor it. October scan had no mention of it. My January scan report had no mention of nodule but found atelectasis. Now my April scan said no change in 1cm nodule, but the atelectasis had worsened and I have emphasematic changes. Here is the report:
"There is a 1 cm noncalcified soft tissue density nodule in the left lobe of the lung posteriorly with associated atelectasis. The soft tissue nodule is unchanged compared to the immediate exam on 1/17/2012, but is new since the prior PET/CT examination on 10/13/2011. The associated atelectasis has increased. I cannot exclude a metastatic deposit. No other pulmonary nodules are appreciated. There are no acute infiltrate seen. There appears be some mild emphysematous changes of the lung apices. There is no pneumothorax or pleural effusion. There is no appreciable axillary, mediastinal or hilar adenopathy. The heart is not enlarged. There is no pericardial effusion. The thoracic aorta maintains a normal caliber without aneurysm formation. The great vessel takeoffs are patent."
My research nurse said not worry about it.
With all the knowledge out here, can anyone give me an explanation. Thanks in advance for your help.
Stage 3b in Georgia. Please check out my history and profile.

RLowe

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Here's what I got back today....

 

Compound nevus w/ architectural disorder and focally severe cytological atypia.  The lesion extents to the lateral and deep margins.  This lesion has severe atypia and it does not appear that it has been completely removed, conservative excision to ensure complete histologic evaluation to exclude an adjacent melanoma is recommenced.  Histologic sections are of skin w/ a nevomelanocytic lesion.  The lesion has junctional and intradermal elements.  Junction cells are present singly as well as in nests.   There is a lentiginous proliferation of melancytes along the dermoepidermal junction.  These cells have focally severe cytolgoic atypia.  In the dermis are nevomelanocytes w/ maturation.  Also, in the dermis there is a mild inflammatory cell infiltrate composed predominantly of lymphocytes and there is fibroplasia. 

 

What does this mean?

 

Thanks!

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Jager001's picture
Replies 8
Last reply 4/2/2015 - 1:12pm
Replies by: mandican, Janner, Anonymous, Jager001, lhaley

Here's what I got back today....

 

Compound nevus w/ architectural disorder and focally severe cytological atypia.  The lesion extents to the lateral and deep margins.  This lesion has severe atypia and it does not appear that it has been completely removed, conservative excision to ensure complete histologic evaluation to exclude an adjacent melanoma is recommenced.  Histologic sections are of skin w/ a nevomelanocytic lesion.  The lesion has junctional and intradermal elements.  Junction cells are present singly as well as in nests.   There is a lentiginous proliferation of melancytes along the dermoepidermal junction.  These cells have focally severe cytolgoic atypia.  In the dermis are nevomelanocytes w/ maturation.  Also, in the dermis there is a mild inflammatory cell infiltrate composed predominantly of lymphocytes and there is fibroplasia. 

 

What does this mean?

 

Thanks!

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natasha's picture
Replies 1
Last reply 5/1/2012 - 12:52pm
Replies by: Linny

Hi! I noticed new freckle on my upper lip.

I have it for couple of months already.

I do not have freckles on my face ,so can it be new melanoma or I just scarring myself?

I even do not know how lip melanomas look like.

Does anyone had this expierence ?

Thank you

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Lauri England's picture
Replies 2
Last reply 4/30/2012 - 12:13pm
Replies by: Swanee, Bonnets

Well things have been going pretty good.  I once again have a CT scan coming up Friday.  I had been doing really well with not stressing about it until today.  All of the sudden it hits me.  I am trying so hard not to worry especially since I've had pretty good scans up to now.  The crazy thing is I lost my support, husband, and now I have to do these things alone for the 1st time and do not want to.  No one is around on that day.  i even thought about re scheduling.  Not sure what to do right now.  Just know for sure I don't want to go alone...

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

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Replies by: Bob B., green8300, Anonymous, Janner, LynnLuc

ive been told by some to have it and by some not to, as its rare but im dealing with somthing perhaps serious, ive all ready had the wle with clear margins, but i had a mitotic rate of 1, i was wondering if anyone had a story about someone with a .65 mm and had a slb or was told not to> thanks

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/1/2012 - 1:25pm
Replies by: atcchris, Swanee, Janner, Anonymous, yoopergirl

I was wondering if anyone could please explain to me exactly what a subqutaneous tumor feels like? Is it small, like a pea? Hard? Can it move under your skin when you are messing with it? I'm not sure what is going on but I have something that is all of the above. Thank You.

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susanr's picture
Replies 7
Last reply 5/4/2012 - 8:23am

Hi everyone,

I am so confused.  Is Avastin off the market in the U.S because of all the fake drug that came into the country???  I hear so many posts that patients are on it and they are being treated in the U.S.  My brother is on Temodor and Abraxane. ....only. 

 

Thanks so much.....It is driving me crazy because they it is not available.

Susan NY

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