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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flvermonter's picture
Replies 3
Last reply 6/21/2013 - 12:55am

Clarification today from Dr Zager.  My husband has 2 appointments at Moffitt next week.  One is with Dr Dilling, Thorasic Onc and that one is for the lung cancer.  The other  is Dr Torrex-Roca, Radiation Onc.  for the Melanoma. 

 

Any thoughts or experience in regard to how they treat and coordinate the two cancer treatements?

Hugs to all, patients and care givers.

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Hello all:

 

My husband has stage three c melanoma and is just reocvering from surgery, lymph nodes, tumor in the neck and parotid gland removal.

 

He has been offered the durg Ippy and a new vaccine called Mavis.

Is there anyone on this site taking Mavis?

 

Thank you.

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flvermonter's picture
Replies 6
Last reply 6/20/2013 - 4:37pm

We meet with Dr Zager on Monday, but I saw the test results on the Moffitt web site.  I need help understanding and in hopes you can help explain to me.

This is from the last surgery to remove the rest of the lymph nodes on my husband's right side.  I think this is good news, but do not know.

It reads tha the BRAF result is "Not Detected"

The BRAF Interpretation - No point mutation is identified in BRAF gene, codon 600.  This assay uses pyrosequencing technology, targeting BRAF utations on codon  yoo.  A negative result indicates that no mutation is identified in these targeted areas with a sensitivity of 5%.  The test covers  over 95% of known BRAF mutations with a specificity of 100% during validation against the V600E results.

 

Thanks, Mary

 

Hugs to all, patients and care givers.

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DeniseK's picture
Replies 31
Last reply 6/20/2013 - 10:06am

Hello Everyone,

I just got back from my Radioloy Oncologist from my first round of SRS.  The Dr. pulled me into the office prior to treatment and told me we are not fighting just one brain met anymore, we are fighting 7.  There are only 2 that are big enough, 1cm and 12mm, that we can target at this time.  The rest are 4-5mm at this time or smaller.

I'm getting a PET scan done this Thursday to see if the Z has stopped working or maybe it's just not working on my brain.  I was planning on going to see my specialist and hopefully get into some trials but now that's out once again.  Now I will be seeing him to figure out what my next plan of action will be.  IPI? Braf + Mek? Temador?  I know there are others out there with the same situation, can anyone offer any advice or tell me a success story, I'm feeling really deflated.  My daughters wedding is March 2014 and I don't know if I'm gonna make it.  It was just 2 months ago that I only had the one brain lesion and now I have 7, seems like it's getting pretty agressive.  I won't know the status of the rest of my body until probably next week.  Uugghh!!  I was really hoping Z was gonna work.

Any help will help!!

Thanks,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NYKaren's picture
Replies 5
Last reply 6/20/2013 - 9:52am
Hello,
If you are on a Merck PD1 trial and had to do a 28-day washout from another drug (in my case, Zelboraf), did you have to wait to have your scans until the 28 days were up, or were you able to have the scans the week before and then actually begin the trial on day 29 or 30?

It looks like I'll be on the Phase 2 trial (with the chemo arm, urggh), provided of course my brain MRI is clean, and I'm trying to see how fast I can actually start whichever drug I get. My onc has me scheduled for scans on day 29, but she's asking Merck if the scans can be done the week before, so I thought I'd ask you'all here.
Thankfully, she prescribed Ativan, as I am a real mess with the waiting.  It's back in my ear, and quite painful. 
Thanks,
Karen 

Don't Stop Believing

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Who_am_i's picture
Replies 3
Last reply 6/19/2013 - 10:09pm
Replies by: Janner, Who_am_i, SABKLYN

Tomorrow is my WLE and SNB, about how long will it take for the results?
Thanks,
Patti

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Hi,
My father who (has stage 4) has just had his first dose of treatment in a PD-1 vs. Dacarbazine clinical trial sponsored by BMS. He reports that he is feeling relatively good after the first round and hasn't noticed any side effects as yet.

During his first round of treatment there were two sessions, the first one he either received placebo/ pd-1 med, and the second one he either received placebo / Dacarbazine. During the first session he felt a sensation down his right leg which lasted throughout the administration time and could taste a slight sweetness. During the second round (2 hours later) he felt a slight pressure when the drug was administered but this didn't last very long. At the end of the entire session we noticed his veins near the site of injection had swelled slightly, but this disappeared shortly after ice was applied.

We were wondering if there are any signs that could indicate which treatment he could be receiving. I've heard and read that Dacarbazine causes arm pain during treatment and after- does anyone know if this is relatively common, whether the sensation during treatment is obvious and whether these effects occur even during the first treatment?

Unfortunately the side effects for both treatments are relatively similar so it would be good to get an insight on what others may have experienced. At the end if the day, we just hope whatever he receives is going to help him.

Thanks for reading,
Julia

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lovetheworld's picture
Replies 7
Last reply 6/19/2013 - 10:03pm
Replies by: POW, Pfitzge1, Anonymous, James from Sydney, lovetheworld

Hi everyone,

I'm a 20 year old male from Australia.

I have notice some new moles growing on my scrotum and the underside of my penis about a week ago and I'm concerned that it is scrotal melanoma.

The new mole on my scrotum is brown to black in colour, about 3-4mm, borderline is a bit irregular. I also notice some dark-coloured skin lesions scattered throughout my scrotum.

The mole on the underside of my penis is relatively small and black in colour, also has a irregular border.

I feel a weird itching sensation from the those two moles occasionally (i traced the feeling without look).

I showed my GP my new moles yesterday, he said I should get it checked and referred me to a dermatologist but I have to wait until the upcoming Monday.

I have a few questions:

1. Based on the symptoms, is scrotal melanoma possible?

2. If the melanoma is on my scrotum does it mean that it spreads quicker? (Since the skin on the scrotum is thinner.)

3. Can I get all my suspicious moles removed on Monday? Or do I need to wait for another surgical date? I really don't want to wait for the melanoma to spread before I remove it.

Thank you all for your precious time.

I am really worried, my mid-semester exams are near and I can hardly get into the mood for study.

I can't sleep at night without thinking and checking my moles.

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I've had three doses of ipi and now have colitis and not likely to get the final dose. Just wondered if anyone had any positive news about how the treatment had worked for them even if not able to complete the course.

Bit of background. I'm 28. I have tumours in my brain (40), liver, lungs, ovary, spine, abdominal wall. I have had lots of bruising and inflammation whilst taking ipi and have lots of haematomas all over my chest area. I haven't had complete scans yet whilst on ipi but was supposed to have gamma knife to 5-10 brain mets after round 1 and once the frame was fitted they found 40 so I ended up having wbr instead alongside ipi....its been a long few weeks and been pretty much in bed since. Got scans in the next couple of weeks.

Thanks

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out4air's picture
Replies 7
Last reply 6/19/2013 - 7:49am

My husband is Stage IIIb Metastatic (several unresectable melanomas on head) and has been taking Zelboraf 6 per day along with 10 mg of Prednisone for 25 days and has all the below symptoms:

All symptoms:
Excessive Sinus drainage and very watery eyes
Tongue and inside of mouth is coated white
Water and liquids taste terrible - very bad taste in mouth
Blurry vision, hard to focus more so when reading things close up
Redness in face and feeling of Tightness of face -just noticed skin was slightly flaking
Rash everywhere (shoulders to ankles) - doesn't hurt but if chilled it is a very weird feeling. The two spots on outside of calves do hurt but are red and you feel a lump
No stamina - tired frequently
Not sleeping well
Flat like warts on head and side of shoulder - Dr. removed them on Friday 6/14
Headaches
Everyday seem to feel worse

Also from From 3/26 modified neck dissection his neck muscle is still quite painful and very tight even after two months of physical therapy - would muscle relaxer help? Or has anyone tried acupuncture therapy for pain relief in neck muscle after this surgery?

Some studies have shown that combining a BRAF inhibitor like Zelboraf with a MEK inhibitor reduces a number of side effects, including rash. A MEK inhibitor was approved by the FDA a few days ago, under the trade name Mekinist. Has anyone tried the combination of these drugs?

We are in it to win it!

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AstraZeneca's experimental drug, selumetinib, is the first targeted medication to show a significant clinical benefit for patients with melanoma of the eye (metastatic uveal melanoma), researchers from the Memorial Sloan-Kettering Cancer Center explained at the 49th annual meeting of the American Society of Clinical Oncology (ASCO), in Chicago, Illinois.

The scientists say that their findings will probably change clinical practice for patients with metastatic uveal melanoma, which to date has been an "untreatable disease". Uveal melanoma is a rare disease, there are 2,500 diagnoses annually in the USA, half of whom develop metastatic disease. For decades, survival of patients with metastasis has remained obstinately at 9 to 12 months.

I'm me, not a statistic. Praying to not be one for years yet.

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Lynn has been gone 2 weeks tomo and I still find myself coming on here daily and reading all the post. Im thinking of all of you and praying that God gives you the strength and courage to cintinue your fight.

Im holding on to my memories but I miss him. Our son is doing good but our daughter is very depressed and struggling. Im trying to be the string one. Lynn had so many friends that watch out for us. We are blessed.

Has anyone heard from gabsound?

Love and Prayers
BELVA

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Last year I finally got around to going to see a dermatologist.  I had an appointment in 2011 but during the time between when the appointment was scheduled and the actual appointment - 4 months - my father got very ill and I just forgot to go.  So, since the spot on my leg looked just as bad as it had the previous year, maybe a bit worse, I finally made the appointment and went.  The dermatoligist said he didn't know what the spot was, but he wasn't concerned about it.  There was however a spot on my left cheek that he wanted to biopsy.  Turned out to be a desmoplastic melanoma - and I had had that spot for a number of years as well,  my primary care doctor had told me it was a cyst several years previous.  Well, I had surgery and a sentinal node biopsy and got on with my life.  Still didn't like the way the spot on the back of my leg looked and said so at every doctor's appointment.  Two weeks ago I saw a physican's assistant at my plastic surgeon's office and mentioned it again.  She said she would do a biopsy just to put my mind at ease, but didn't think it was anything serious - have heard this for several years now.  Well, then I get the phone call that it is infact another melanoma.  How in the world could all of these doctors have not diagnosed that when I kept pointing it out to them???  Now I am a bit concerned because I know it has been there at least 2 - 3 years and has gotten larger in that time.  Also how much confidence should I have in medical professionals who keep looking at this and saying they aren't concerned with it when they are supposed to be able to diagnose melanomas?  

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