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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Rocco's picture
Replies 1
Last reply 2/25/2015 - 7:50pm
Replies by: Janner

Your stories helped me through some rough early years after diagnosis.....just wondering if you were still around.

-Rocco

Luke 1:37

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Randy437's picture
Replies 4
Last reply 2/25/2015 - 7:29pm

I am stage IV, but have been NED for five years after surgeries to remove mets from both lungs, brain and small intestine.  Currently I get a CT with and without contrast every 4 months and a brain MRI with and without every contrast every six months.  Does anyone similarily situated have a different scan schedule?  I'm somewhat concerned about the cumulative radiation from the CT scans.

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/25/2015 - 6:48pm
Replies by: Anonymous, Tim--MRF, joelcairo

Can anyone tell me anything about Avastin?  My father's oncologist suggested he be part of a study combining Yervoy with Avastin.  He has stage 4 melanoma.  I've read a lot about Yervoy but nothing on Avastin.  Thank you.

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Anonymous's picture
Anonymous
Replies 11
Last reply 2/25/2015 - 5:45pm
Replies by: Kacey79, ldub, Janner, _Paul_, Anonymous

I had a biopsy done last week on a mole on my front scalp, right behind my hairline.  This is my 3rd melanoma diagnosis within the past year.  One was on my left upper arm (.30 breslow depth), the second was on my right forearm (in situ), and the third is on my scalp.  I feel sick to my stomach right now but I'm trying so hard not to worry.

I was actually at Moffitt in Tampa two weeks prior to have total body photography of all my spots.  I'm anxious as to what else on my body is melanoma.  

What should I expect with the WLE on my scalp?  I just know it's tighter skin up in this area.  I appreciate your advice and/or encouragement.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/25/2015 - 5:23pm
Replies by: Julie in SoCal

Thinking about you. How did you appointment go with the "Rock Star" doctor?

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ldub's picture
Replies 8
Last reply 2/25/2015 - 2:34pm
Replies by: ldub, Charlie S, Mom2Addy, Janner

Hi - I had two moles taken off last week.  Unfortunately, one of the moles was MIS.  What's bothering me is that my dermatologist (very experienced - 40+ years, academician, metropolitan area) said that he was not impressed with the mole on my calf that I pointed out and that we could just wait and watch (it was about 5 mm).  The mole bothered me as an ugly duckling and stood out from the others on my leg, so I told him I would just like to get rid of it as I might obsess on it.  Imagine my surprise when it came back positive as early MIS. My doctor has reassured me that I am very lucky that we got it at such an early stage (and I completely agree) and that I do not have to worry.  Of course I am freaking out now.  Now he also mentions that he thought it was dysplastic (which he never told me when I was there). 

Because my doctor did not think the mole was any big deal before the path came back,  I am now questioning everything - my path results (even though they were sent out to a separate dermatopathologist whose CV seems OK), the correct staging (hoping overread and not underread) and I now have serious reservations about going back to him for further monitoring once I have the WLE done in three weeks at a melanoma clinic.  I keep asking myself - What if I listened to him?  What if he misses other strange birds hanging out on my skin?  Although I have been to him a few times for other mole removal and basic checks and we have a pretty good relationship otherwise, I am pretty sure this physician/patient relationship is doomed because he essentially missed this.  Have others out there had this happen to them?  Also, can anyone provide some coping advice as I wait for the re-review of my path slides and the WLE experience?  I am having a lot of anxiety even though my prognosis seems good at this time.  Thanks!

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G-Samsa's picture
Replies 3
Last reply 2/25/2015 - 8:45am
Replies by: Anonymous, Mat, Bubbles

Read this morning that BMS has just purchased Flexus' IDO inhibitor assets.  This is likely good news. (I think, hope). Back before anti-PD1 took center stage, early IDO trials were showing great promise. (I remember someone on this site indicating a 48 percent response rate for a trial at the Angeles Clinic) I believe IDO interferes with a whole other pathway than the PD1/PDL1 route, and may therefore offer another complimentary way to tackle the beast.   There is indication that BMS intends to initiate some clinical trials within six months... It's nice to have a heavyweight picking this up--I suppose that's a benefit of the crowded PD1 field.

 

 

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I am currently on Keytruda at Johns Hopkins and may be oving to the Hampton Roads area.  Do any of you get Keytruda locally?  Just wondering if I would have to travel to get treatment.  Thanks!!

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andimd's picture
Replies 7
Last reply 2/24/2015 - 7:12pm

I have been being treated for a fungus under the nail on my big toe for 3 or 4 months. In the past month, not only has it not gotten better but it is changing a lot. I have an appointment with a podiatrist in 1 1/2 weeks but hate the wait. A spot started that looked kind of brown, it now takes up half of the toenail and keeps getting darker. The cuticle and surrounding skin is also getting dark (pretty quickly) and today I noticed an almost yellow small circle in the middlevof the black area. I'm trying not to worry but not sure that I like how fast it is changing. Has anyone seen anything like this? It is very ugly but I would post a pic if I knew how. Any info or opinions are appreciated, thanks!!

Andrea Domeier

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 ASX Release 24th February 2015 

FURTHER UPDATE ON NEW ANTICANCER DRUG, PPL-1, IN HUMAN TRIAL AT ROYAL ADELAIDE HOSPITAL 

PharmAust Limited (“PharmAust”) (ASX: PAA & PAAO) is pleased to report that a further patient analysed for levels of p70S6K tumour marker, has also shown a meaningful reduction following oral treatment with PPL-1. Furthermore, preliminary analysis of pharmacokinetic serum levels of PPL-1 in patients receiving the drug at the Royal Adelaide Hospital (RAH) has confirmed absorption following oral dosing and indicates that PPL-1 is active in the high nanomolar range which is similar to other cytotoxic drugs used during chemotherapy. 

PharmAust’s Executive Chairman Dr Roger Aston said “Even though we are dealing with small numbers of patients in our analyses so far, it is exciting to see that we have achieved a statistically significant drop in p70S6K levels in white blood cells in the 5 patients examined so far (p<0.001 at day 3 of dosing). It is furthermore encouraging that the reduction in the p70S6K tumour marker appears to correlate with blood levels of the drug. The Clinical Research staff monitoring the trial, have not noted any serious adverse events further supporting the low side-effect profile of PPL-1”. 

p70S6K is considered as a promising marker and indicator of the aggressive behaviour and prognosis of carcinomas. Overexpression of p70S6K is generally associated with aggressive disease and poor prognosis among cancer patients. Patients with elevated p70S6K often have poor survival rates and metastases. Reductions of p70S6K in blood cells may reflect blocks to tumour progression. 

PPL-1 is an approved veterinary drug launched in recent years by one of the leading global animal health corporations for the treatment of parasitic diseases in sheep. PharmAust, through its wholly owned subsidiary, Pitney Pharmaceuticals Pty Limited, owns patents on the use of PPL-1 in cancer and malignant disease. The drug will be potentially administered to patients suffering from diverse cancers. Recruitment will include selection of patients suffering from lung, pancreas, oesophageal, gastric, colorectal, ovarian, breast, prostate, liver, sarcoma, lymphoma, and melanoma. In animals and more recently in our studies in man, PPL-1 has an exceptionally low toxicity profile. 

The cancer chemotherapy market (estimated at $42 billion/annum)* is currently the fastest growing sector within the pharma industry, mainly driven by the identification of new potential therapeutic targets. This growth is further fuelled by the magnitude of the disease worldwide, currently estimated at more than 25 million people suffering from cancer globally, and an estimated 5 million people dying each year from the disease. 

*Reference: Research and Markets.com accessed 14th February 2014: http://www.researchandmarkets.com/reports/335548/chemotherapy_market_ins...

For further details please contact: 

Dr Roger Aston 

Executive Chairman 

PharmAust Limited 

Tel: 0402 762 204 

www.pharmaust.com 

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RGal's picture
Replies 1
Last reply 2/24/2015 - 12:53am
Replies by: Jubes

My father has just begun a trial of Anti pd-1 trial.  He had one infusion and has been on the  oral inhibitor pills for just about 2 wks now.  After week one he had enough fluid in his lungs to have him hospitalized to drain the lungs.  There is now some sort of mass that the doctors need to break up so they can continue the draining to continue.  Has anyone had a similar experience with lung nodules?  Any info you can share would be most apprectiated.

 

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Eileensulliv's picture
Replies 3
Last reply 2/23/2015 - 6:52pm
Replies by: AshleyS, Bubbles, BrianP

Happy Sunday! A few weeks ago I posted asking if anyone could share their experiences on ipi and nivo, amd I am very grateful for the responses! I decided to go forward with the trial to treat my mets in my bowel and lung, and I also had a wider excision of the recurrence in my back on Feb. 5th. The path report stated there were all clear margins of that tumor. The incision is healing nicely, and despite of the fact that I still cannot wear a bra, I am going back to work on Monday (this should be interesting!) 

This Thursday I am going for my first infusion of Yervoy and Nivolumab at Johns Hopkins. Although I am a bit nervous (I've never had any treatment of any sort) I am also very excited to get this started!! I am so hopeful that this will help!! And I am also excited because my dad arrives here the night before my treatment and will be staying for a week!

There is some talk of putting in a port, just because I have lymphadema in both of my arms, but they said we would revisit the topic after my first treatment. 

On a side note, we got about 10 inches of snow yesterday. Although it's beautiful, I'm ready for spring and some cherry blossoms... And a plow truck on our street would be nice, also! C'mon, Spring!!!

Eileen 

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5dives's picture
Replies 12
Last reply 2/23/2015 - 4:32pm

Hello all, 

I am currently T1bN1a (stage 3b) and feeling really well. My SNLB / WLE was July 10th. I see my dermatologist every three months and the oncologist every three months, so I'm under somebody's watchful eye every six weeks. I feel like my anxiety is under control, and I'm finally able to focus on diet, exercise, and being proactive about my health.  I am in a good place and in good hands, but like many melanoma patients, I wonder if I could be doing more. 

I did not have the lymph node dissection or interferon after my one node came back slightly positive. I am treated at Loyola in Chicago and I have been seen by Dr. Postow at Memorial Sloan Kettering. 

My question is this: If / when a clinical trial becomes available for which a patient might qualify, does their doctor point that out to them, or do patients have to keep their eyes out for trials? I am the kind of person who would like to help move the science forward, especially if I can be useful in some way...but I do understand that trials involve exposing oneself to risk.  Am I supposed to be agressive, or wait until I "need" a trial? 

I see that there is a vaccine trial (NCT02129075) at MSK that I might qualify for. Since I'm a patient at MSK, would you expect a doctor to contact me? How is this handled? 

If you are of a mind to tell me to sit tight and don't worry about clinical trials until one is necessary, I welcome that kind of feedback. I just know that I've learned quite a bit from this site, and I know NOTHING about trials. 

Thanks in advance. Best,

Elaine

http://melanomadame.blogspot.com/

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dmk252003's picture
Replies 11
Last reply 2/22/2015 - 11:11pm

Hello

My mom was diagnosed with Stage IV melanoma. She has tumors in her lungs, spine, adrenal gland, clavicle. Her oncologist is recommending Yervoy. I would like to get feedback from people who have gone through similiar situation. I appreciate it. Thanks, Donna

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ashlee12's picture
Replies 5
Last reply 2/22/2015 - 10:04pm
Replies by: Janner, ashlee12

So I've had my report for awhile I just now am looking at it again... I need some help with what this means..... It says 

 

 

severely atypical lentiginous junctional melanocytic proliferation , favor Early evolving melanoma in situ (narrowly excised)

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