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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Gene_S's picture
Replies 15
Last reply 5/20/2012 - 8:44pm

I had my scans on Friday and the results are great.

One small 1.3 mm lesion left out of 9 and it is almost immeasurable.  We are so excited can't wait to say NED.

Just for those that don't know Gene he is on the clinical trial with Ipi at 10 mg/kg and GMCSF self shots 14 days on and 7 days off.  He has been receiving Ipi after the initial 4 doses every 12 weeks on the maintenance part of this trial.  He started it on Mar. 3, 2011.  After 4 surgeries he had an inoperable lesion on the head at the C1-2 level.  He also had 3 sub q's in the same area and it had metastisized to the liver and lungs as well.

We are very pleased with these results and wish to share so we can give others hope.  You can check his profile for more information on his journey which started in Jan. 2008.

Judy (loving wife and caregiver of Gene Stage IV and almost NED).

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2012 - 2:03am
Replies by: Bob B.

Spring Symposium 2012 

Translating Melanoma Research to Improved Patient Care 

Following the presentation, a panel of long-term survivors will share their experiences and stories of survivorship.

An opportunity for education, discussion & connection for patients,

survivors, families & friends 

Tuesday, May 8, 6:30 – 9:00 pm 

Dana Farber Cancer Institute

Jimmy Fund Auditorium

35 Binney Street, Boston, MA 

Luke 1:37

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aldakota22's picture
Replies 1
Last reply 5/3/2012 - 3:29pm
Replies by: washoegal

 Best freind saw doc. after severe back pain.Originally thought was a pulled muscle.Initial diagnosis is a tumor on his windpipe.Any advise to give him to at least give him a fighting chance against this form of lung cancer.A lifetime smoker since the Viet Nam War.Thanks for any input.    Al

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/5/2012 - 4:50pm
Replies by: Joan C, Anonymous, Linny, SoCalDave, natasha, gabsound

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Drew N's picture
Replies 3
Last reply 5/22/2012 - 2:49pm
Replies by: Drew N, lhaley, melmar

Nice to be able to repeat that title. I went to MDA and had the full lookover Monday, including x-rays and CT. All clear. That's three years out from the end of 30 days of INF. I am very, very grateful for the days I've had, and even more grateful for promising treatments in case I need some help.

IIIB

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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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