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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Michelem's picture
Replies 7
Last reply 2/26/2014 - 11:16am

Husband woke up this am with severe abdominal swelling. Onc says this is caused by the cancer spreading too fast for the ipi to fight. He's thinking of switching us from ipi to Temodar. Says there is no literature on using them together.

We were in ER over the weekend, they did not properly read the labs and did a total misdiagnosis of dehydration.

Things are looking very grim. Thoughts from anyone here? mm

MicheleM

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sofistef's picture
Replies 3
Last reply 2/26/2014 - 9:10am
Replies by: Anonymous, Maureen038, Brendan

Hello,

Today I had the 12 weeks scans on this trial, and there is no new disease and the the only lymph node involved is stable. I was hoping for some shrinkage, but I'm cautiously happy with stable!. The doctor is happy with the results, hopefully with the next set of scans we will see some shrinkage. Since the trial is blinded, I don't know what medicine I'm getting, but based on the side effects, I believe I'm only getting Nivo.

 

Dana

 

 

Macke

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My husband has had an inability to urinate and his abdomen fills with fluid . . . he had a procedure to drain it yesterday but it is almost back to the same uncomfortable level today. Doc says the ipi is not keeping ahead of the aggressive spread of the cancer, and is going to try Temodar, then add the ipi back in. He said the fluid in abdomen is a sign of the effect of cancer spread, not a side effect of the ipi.

I am, like to many others here, in very great fear. Has anyone else had a situation like this, and how was it overcome?   mm

MicheleM

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Missawill74's picture
Replies 11
Last reply 2/26/2014 - 12:32am

I am the mother to two beautiful little girls.  My oldest, 7 year old, had a mole on her face that appeared two years ago.   I wasn't concerned because both my mother and myself have moles on this same cheek.  I just assumed she was going to have one as well. Over the last year I kept noticing it was appearing larger and the last six months it appeared pigmented and bumpy.  She complained of it itching her.   Her pediatrician didn't think it was anything but sent her to a dermatologist since it was on her face.   Within two minutes of our appointment the dermatologist said it needed to come off and be biopsied that it did indeed look like melana.  This totally took me back because I still felt it was like the one my mother her and self had.   They told me that if it was confirmed melanoma that they would send her to a oncologist and she would have to have surgery to get it completely removed because it was too deep for them to completely get in the office that day.  

For the last two months she has battled a sore throat and severely swollen tonsils and after reading on melanoma and how it can spread to lymphnodes I'm wondering if this is all connected.  We won't know the result until next Friday but the doctor did tell me it did look very much like melanoma.  I  beside myself.  This is my baby.   I've always been adament about using sunscreen.   

If they do call back with a melanoma diagnosis what questions should I be ready to ask?  What can I start doing to prepare for this fight?   I'm so scared.  I am a teacher and know not to believe everything you read. I know things are outdated online.   I feel like this is a good site to gain knowledge and arm myself with the right tools.   I just wish I could contain my nerves.   Any help would be greatly appreciated!

thanks,

Melissa

Melissa

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buffcody's picture
Replies 11
Last reply 2/25/2014 - 9:12pm

Amy passed away this morning.  She was a most active member of this Forum in the last three years bringing strength and consolation to many, not only of our number, but as her Facebook page attests to many, many friends and family members, particularly in Nashville her home.  Amy was a strong woman of great faith, also full of love and good humor. Much of who she was and is can be found at her blog, nashvegasmom.wordpress.com. It's very worth the reading.  One of the great blessings in my own battle with melanoma has been getting to know her well though only on line in a relationship that began on this Forum.  I will miss her very much.  She leaves behind her her mother, brother and sister, husband Alan, and three young children.  Her father died of melanoma four years ago, and she was happiest that her own disease did not start until he was gone.  Her deepest belief was though she in no way wanted to leave her beloved family and friends that if it was God's will then she was on board with that all the way and that she could do even more for us from her home with Him.  I believe she will indeed. 

Frank

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Ninniditti's picture
Replies 2
Last reply 2/25/2014 - 3:28pm
Replies by: Anonymous, Bubbles

Hi!

I am in a trial, nivolumab/dacarbazin. If I suffer from side effects such as colite can I still be part of the trial or do I have to pause the trial until I am cured from the side effect. Can I be totally neglected to go on with the trial.  if I have another cancer than melanoma in my guts can I still be in the trial. I have blood and slime in my stools and suppose I have to report this to the doctors in the trial. I so want to go on with the trial.  I am hoping for answer. 

Inger

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Anonymous's picture
Replies 3
Last reply 2/25/2014 - 2:45pm

Hi,

Has anyone experiened rigors while they were on Yervoy? If so, did they disappear over time or did you do or take anything to stop them?

Thanks!

 

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melfighter's picture
Replies 8
Last reply 2/25/2014 - 2:39pm
Replies by: ecc26, melfighter, MattF, Fen

Hi all, my husband was just diagnosed with stage iv Melanoma three weeks ago, with 14 lesions in his brain, in his lung, liver, bone, spine, it has spread every where in his body. He also has several bumps that just popped up on his back just this past week alone. He is in a lot of pain and is on Flantanal, and other pain meds to keep the pain somewhat manageable. 

He is in good spirit and no symptoms so far other than his back pain and fatigue, since he is getting radiation (WBR) for the lesions in his brain.

He just started his first dosage of BRAF/MEK today. I have been on this forum every day ever since he's been diagnosed and trying to figure out given his advanced stage even for stage IV, if there is hope for him.

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nancyg's picture
Replies 4
Last reply 2/25/2014 - 2:20pm
Replies by: nancyg, Ali

My husband's bone scan revealed...lesions on rib cage and a lesion on his rt temporal lobe.... He started his ipi infusions Sept... finished Nov 2013.... Had two CT scans Dec/Jan....big tumor on lung shrunk by50% one disappeared completely and others all stable... We are thrilled..... But then the bone scan results threw us off ...those lesions did not show up on the Jan 10 CT.. Bone scan done Jan 16..So ..Do bone lesions show up on Ct or PET scans? (Obviously not, right?) Also, he had an appointment yesterday  and his LDH levels are going up... So the Dr  seems to think that the ipi may have stopped. Working???    The dr also feels that there were no bone lesions until October or after... Because a PET and  a CT scan done in July/September showed no indication  of bone involvement...So confused!!!! Can ipi be shrinking and stabilizing  some tumors...while lesions are spreading on the bone??  Like my husband says one step forward two steps back...trying to remain positive... He is Going for a Pet scan Tuesday and Brain MRI Friday

Thanks and God Bless

Nancy

 

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gaby's picture
Replies 6
Last reply 2/25/2014 - 1:15pm

I'm really scared. My husband was diagnosed in 2012 stage3a melanoma , because he had micrometastasis in the sentinel node , the rest (12)  were clean. He had in 2012, 38 years old. He started in October 2012 with high doses of pegylated interferon for two months and after that continuous average dose to date. He was positive despite the side effects of pegylated interferon and was determined to complete the two years of treatment. He had from the diagnostic CT every 6 months thank God for all normal except when some nodes increased in size. So the oncologist  decided to make a pet. Yesterday I got the result of my husband's pet. The result is very bad, there are many hot spots in the pelvis iliac chains. I am very distressed.  As can be? Almost two years ago on her 12 nodes removed, only the sentinel tested positive with micrometastasis, the rest clean ... and now almost 2 years later again melanoma? or is another primary melanoma? now is stage 3 or 4? what will be the decision of the oncologist?  The prognostic is  going to get worse?

thanks to all

 

gaby (from argentina)

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Missie's picture
Replies 7
Last reply 2/25/2014 - 12:57pm
Replies by: JerryfromFauq, Linny, Missie, Anonymous

To be honest I have not been diagnosed. Although I did only have it brought to my attention yesterday. I don't know much about this disease. I am very scared and don't really know where to start. Do I just make an apt. With a cancer doctor or do I go to the hospital? I am really unsure all I know is I want to get this taken care of as soon as possible. I have had this red mark on my arm for years. When I first seen it I just said it will probably go away in a few days... it never went away. In fact recently it got a little bit bigger. My mom seen it yesterday and said immediately that's melanoma I wanted to throw up. You never expect these things to happen and I am not outside in the sun a lot either. I am very pale and always have been and only had sun burn and hand full of times. I don't know how I could get this and I am Afraid of what it may have done to my body the whole time it has gone unnoticed. Can someone point me in the right direction? I am lost and scared and don't have much support here.

Millissa heilman

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Maereard's picture
Replies 4
Last reply 2/25/2014 - 12:41pm
Replies by: Maereard, Janner, BrianP

I always come back here when I'm scared. I was diagnosed with melanoma over a year ago. It was very small. They did wide incision and I was told thete was no need to biopsy the lymph nodes. I was very lucky and all margins came back clear from the incision. I had my regular skin check 2 weeks ago and all clear again:-).....until this past weekend. I found a lump under my arm in the shower. It was about the size of a pea. I sqeezed it:-/...I was hoping it was just a pimple from shaving. Its a few days later and now it is red a very very painful:-( I scheduled an appt with the dermatologist in the morning to have it looked at. Of course now I'm terrified. I am really just posting this to get my fear out.

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sunshinlilyrose's picture
Replies 31
Last reply 2/24/2014 - 11:26pm

Hi all,  so I had a weird growth  on my lower hip for a while and finally had it biopsied. My primary called me yesterday to tell me it is melanoma and told me to see a Dermotologist with a speciality in skin cancers. She faxed me over the pathology report but I don't really understand it.  I would appreciate any help deciphering it.  I also found out I am 7 weeks pregnant and am wondering if this is going to hinder any additional tests I may need.....smh....very stressed.  Ok, this is what my report says

malignant melanoma, superficial spreading type, invasive to level 2 and a measured thickness of 0.4mm, arising in the background of a compound dysplastic nevus with severe atypia, close to lateral and deep margins. ( please see consultation report from dr Martin c. Mihm of Harvard )

ok so above is exactly what mine said, including the parentheses, which btw I did not get a copy of that report. 

Thanks all!!!

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LBIO's picture
Replies 1
Last reply 2/24/2014 - 9:56pm
Replies by: BrianP

Hi, I'm Lisa and I work for Lion Biotechnologies (www.lbio.com) and am looking for patients who have participated in clinical trials using TIL treatment to share their testimonials. If you have and would be interested in sharing your story, you can email us at info@lionbio.com

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/24/2014 - 9:47pm
Replies by: Swanee

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