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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tcell's picture
Replies 7
Last reply 8/11/2014 - 10:30am

Hi all,

- diagnosed with stage IV in Februrary with lots of tumors in lungs, chest, abdomen, liver, bones

- good initial response to Taf / Mek, last scans in May showed considerable shrinkage everywhere

- bloodwork in June already not 100% ok so put staging one month earlier to July 21

- results show considerable growth in chest, lunhs, one liver met shrinking, one growing....bones stable. I got chest pain and cough and I am scared to death which I guess is kind of normal.

Guess that's it for the combo. Discussed with my specialist. Next step will be Ipi and continuation of Taf with just short breaks before and after the infusions. He said that there are good results from an Australian Phase 1 trial with that Combo. He hopes that Taf will put kind of a brake on tumor growth as my burden is rather high until Ipi kicks in  He says it is important to discontinue Mek as this caused severe troubles in combination with Ipi.

next option if something goes wrong will be Anti-Pd1 EAP. I hope, however, not to fail Ipi.

any comments, suggestions and uplifting words are welcome!

Thanks to all of you who are of such great help in dealing with this illness.

Chris

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vicuk's picture
Replies 6
Last reply 8/11/2014 - 5:37am

My friend Helen has just had results from latest scan and all tumours either decayed or too small to measure and are being held stable. She has been been on Dab/Tram trial for 2 years and 1 month and was initially given 6 months to live.

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Anonymous's picture
Replies 9
Last reply 8/11/2014 - 2:04am

Hi!

A friend of mine aged about 60 years has been diagnosed with Melanoma Left Heel with left Inguino Pelvic. She underwent a surgery  which was wide local excision of Heel Lesion with superficial and Deep Ingunial Block Dissection with Left Pelvic Lymphnode Dissection with Heel Defect Reconstruction with Medial Plantar Flap.

Post surgery, doctor has kept her under observation with regular CT scans and blood tests on a 6 week basis with no other treatment of chemotheraphy, radiation therpahy or interferons. I am a bit concerned if this is alright as how will the spread contain without treatment.

Can anyone please advice. Also what all food intake can help contain the spread.

Look forward.

Best

 

God bless you

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Brigitte's picture
Replies 2
Last reply 8/10/2014 - 10:25pm
Replies by: Brigitte, Janner

On tuesday I go get a conservative excision on my upper back for a atypical mole. . I 'm not worried about getting it done but I was wondering about the post op and the healing time.  The only problem with my shave biopsy was the itching.  Sense I will have stiches will I be able to sleep on my back? Will I be able to go to the gym? How long does it take to heal? My shave biopsy took about 2 weeks to heal (where I felt comfortable not putting  vasaline and a bandage on it).  The shave biopsy was done almost 3 weeks ago and its still pink and sometimes itches. I was just wondering if the healing time for the conservative excision will be a whole  lot longer. Im almost thinking of asking my docter to do a wide excision so I know the margins are clear and I dont have to go back and do this again. 

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Mjp's picture
Replies 10
Last reply 8/10/2014 - 12:53pm

I had a mole biopsied last week and my doctor said it is malignant melanoma. When he called with the news I was in shock, and didn't ask any questions. If anyone here can provide me with and advice or information I'd appreciate it. My doctor is gone for this next week so I can't reach him now. 

 

My doctor said that they "got all the melanoma out" during the biopsy and the surgery to remove the surrounding tissue is just a precaution. I'm confused because the entire mole wasn't removed during the shave biopsy, so how do they know they got all of it?

 

What is the surgery like, will I be back to normal the following day? The mole is on my stomach. 

 

I'm 30 years old. I have not been taking care of myself- I don't exercise and I'm not on any kind of a diet. This has scared the hell out of me. I'm going to make changes and be as healthy as I possibly can be. I have so many other moles on my body and I know this is going to happen again. Doctor wants to see me every 3-6 months to biopsy the two worst moles each time and take it from there. I did this to myself, I'm fair skinned with blue eyes and red hair, I used tanning beds regularly in high school and never wore sun screen outdoors. Are there any vitamins I should take, or anything I should avoid? Same with foods, anything that would help? I know it can't prevent cancer, but I feel like I need to do something to help myself. 

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Ginger8888's picture
Replies 3
Last reply 8/10/2014 - 1:41am

I have a question...I did the 30 day HD interferon back in April and a week after my treatment ended they did a ct scan..My question is, how soon after finishing interferon did you have a ct scan done?..The reason for me asking is that i am doing my last infusion of yervoy wed and not sure when i will have scans after that because the yervoy is slow acting..Was just wondering if interferon is a little like yervoy or if it's instant results? They found one very small spot in each lung in the ct scan right after interferon, they were there before treatment but lit up a little more after interferon..They were to small to biopsy..

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5dives's picture
Replies 7
Last reply 8/9/2014 - 11:32pm

Hello all,

I have some weird lab results, and I was hoping you might help me figure out if my anxiety has basis in reality.

I'll try and make it short! Please feel free to skim!

WLE / SLNB on 7/10 for a .81 lesion, mitotic rate 1, Clark's IV. Surgery went beautifully, easy recovery. Surgeon went on vacation for 3 weeks. 

Follow up visit with PA on 7/15 who told me my node was "trace positive and I needed brain can, etc. i freakes iut. Got a call 6 hours later that another stain had been tun, and the node was actually negative. This report came from the Gottlieb Medical Center, which is part of the Loyola complex in Chicago.

I requested a second opinion from the melanoma expert in the Loyola lab. Her report came back that the node was negative.

I cannot (CANNOT) shake the idea that my node was positive. 

I asked the surgical oncologist if there would be any benefit to running any scans. He said the scans would be mathmatically more likely to turn up false positives at this point, leading to unnecessary biopsies than they would be to find "real" melanoma. 

He has sent me for an appointment with Dr. Joe Clark on 9/2.  Dr. Clark has an excellent reputation, and I have confidence in him, although I haven't met him. 

Can anybody give me any guidance as to what I should be hoping happens next? I can't shake the idea that I need more information, but I recognize the possibility that this is nothing more than anxiety on my part. 

If I DO have active disease, I want to be treated by Dr. Joe Clark, but right now I'm a little uncertain about my choice. 

Thoughts? 

Thank you! 

Elaine

http://melanomadame.blogspot.com/

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ashleyelizabeth's picture
Replies 2
Last reply 8/9/2014 - 11:30pm
Replies by: JerryfromFauq, Janner

I recently joined this blog when I was told by my GP that I had Melanoma.  I jumped to every conclusion in the book because I have a history of Anxiety and a little Hypochindriac. Since being told about the Melanoma I have started t feel sick have a cough and swolen neck/glands.  Of course I am not a doctor but my family says it's because since I was told the news I have been online reading everyone's stories and stressing about every little mark and mole on my body.  I met with my GP after the weekend and asked a bunch of questions (depth, stage of cancer, next steps, etc).  Most she didn't know but I did request a copy of my histopathology report.  The diagnosis say "MELANOMA IN SITU".  My doctor says she car say for sure it's spread bit she doesn't think so.  She also said she was thinking about sending me for a CT but said she would leave that up to the plastic surgeon.  I am still waiting to be referred to a plastic surgeon as well as a dermatologist so he can examine the rest of my moles.  

What I am wondering is, should I get a second opnion? Could the diagnosis be wrong and it's worse? I am also pan acing about all my other moles and marks.  I am convinced there are more.  The mole I had removed was VERY obvious (black, then light, slightly raised, odly shaped), none that I have now look like that but I still worry.

Thanks for your help! I am sorry for all the questions but I was just told a week ago today :(

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curious12's picture
Replies 2
Last reply 8/9/2014 - 6:03pm
Replies by: Treadlightly, Janner

Hi everyone,

I posted recently about my son's mystery bump on his forehead. They think it's a cyst (can be felt under the skin) but will remove if it doesn't resolve. The new dark spot on his heel (about 1mm) she thinks looks atypical with dermatoscope so we will remove. She said a punch biopsy on the heel would be difficult and recommened a "scoop"... thoughts on this? This is for my 9 year old son. I'm normally adamant about punches, but I can see how it would be hard to keep together on his heel. She thinks atypical, not mel, but of course one never knows! Thanks!

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emily_f's picture
Replies 7
Last reply 8/9/2014 - 1:31pm
Replies by: Treadlightly, BrianP, madhatter84, Anonymous, tschmith, DZnDef

I recently had an early melanoma removed from my arm with clear margins. I will now have check ups every three months. I am wondering if any of you have advice/information on how to boost my immune system?  I can't help but think there could be an underlying problem within my body that allowed melanoma to develop. Thoughts? Strategies?

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JewelryCrafterGirl's picture
Replies 31
Last reply 8/9/2014 - 12:47pm

Was wondering what your recovery times were like for the wide local excision and sentinel lymph node biopsy.  Am having mine done at Lee Moffitt (Dr. Zager) in Tampa, Florida on January 13 or 14.  WLE is mid back, SNB is either under arm or neck area.  They say six weeks for total recovery, but that some people are ready to go back to work in just a couple of days.

Thanks, Happy New Year!

Pennie

embrace the positive

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bj63's picture
Replies 17
Last reply 8/8/2014 - 8:07pm

As some of you know, I've been on Zelboraf for a year, NED for at least nine months.  Well, unfortunately I found out last Friday that I have multiple brain mets in all four brain quadrants after waking up that morning with severe neurological double vision problems and nystagmus.  Both the oncologist and the radiologist think there are just too many (and too much edema, currently) for SRS or other targeted prodedures, and fearing I might have a stroke, put me on dexamethazone right away, along with WBR.  I've been doing the treatments and responding well, in that my vision has cleared up for now.  But we know this is only a temporary thing.

But here's the kicker: The Zelboraf apparently is still working on the tumors within my body, as the PET-CT I did last weekend shows NED anywhere outside my skull.  Since there is no decisive data on whether Zelboraf does or does not cross the blood-brain barrier, the Onc wants to try dose escalation, thinking that higher concentrations might help get more of the drug into my brain.  He said that in his searches, he has found two documented cases worldwide where it has been tried.  One was for a person who had stopped responding entirely to Z, and the dose escalation had no effect.  But the other case was a person like me, who had brain mets while the body remained clear, and they were able to elicit a partial response. 

Anybody else here tried any does escalation of Z?  Thoughts?

Sometimes no news is the best news!

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Anonymous's picture
Replies 3
Last reply 8/8/2014 - 7:51pm
Replies by: DZnDef, ecc26, Anonymous

Does anyone have any inforamtion about being able to drive after having gamma knife radiation surgery for brain mets? Links to webistes appreciated.

I am not finding much online about this and need to ask a doctor some questions.

There is no history of seizures, headaches...and more than one tumor treated. So far, there are no new tumors. There was a reocurance and treatment 6 months after the first treatment.  But so far no additional turmors have been found.

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Greg - kyle's dad's picture
Replies 3
Last reply 8/8/2014 - 3:54pm
Replies by: CHD, Anonymous

My son Kyle (Stage 3C, 4 years NED) recently moved to Colorado springs.  We are looking for a recommendation for a melanoma specialist.  I've heard that UC Boulder has a good melanoma center.  Can anyone recommend an oncologists there or anywhere near Denver/Colorado springs?

Thanks,

Greg

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