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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StephyD83's picture
Replies 6
Last reply 11/14/2014 - 1:26am
Replies by: JustMeInCA, StephyD83

Hi-

I was wondering if anyone here has gone to UCSF Melanoma Center in SF? I am going there for a second opinion and was looking for some feedback.

Thanks!

Stephanie

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jualonso's picture
Replies 1
Last reply 11/14/2014 - 1:21am
Replies by: Ginger8888

Hi folks,

Im now on Ipi treatment and i would like to start with Cbd oil but first i want to know if someone has do it with no bad reaction.

 

Thanks all

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arthurjedi007's picture
Replies 10
Last reply 11/13/2014 - 7:55pm

I'm having a lot of 2nd thoughts about TIL. It looks like if I do that treatment it excludes me from the Nivo/AntiLag3 trial. That trial seems to have the purpose of helping folks that have progressed while on pd1. I'm not sure how successful they are having but I'm traveling to Chicago to see the doc next Tuesday about it. It's the typical no slot available now but will be opening thing. I'm also not sure if I'm strong enough to make it through the TIL treatment if I go that route. I've been hearing a lot about TIL and you have to be physically strong which I'm not sure if I am. If I'm not strong enough I could end up depleted or worse. So I dunno. Just rambling to folks I know get it because you've been through so much too.

Artie

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Replies by: Emcjones1, Bubbles, Anonymous, Janner

Hello patrons,

I am 66 yrs old, male, ethnically East Indian, have been diagnosed with Metastatic Malignant Melanoma. I was also test B-RAF positive with mutation in codon 600 exon 15 of BRAF gene and was prescribed Zelboraf (Vemurafenib) by the doctor, dosage advised 960mg twice a day.  Secondly, the tumor growth behind the head in the scalp region was surgically removed by a Onco Surgeon.

I also checked out the Clinical Trials India Registry and an ongoing Trial of Zelboraf (Vemurafenib) by Roche was active but not recruting any patients. Alternatively I checked Clinical Trials in USA and found many ongoing trials under sponsorship of Roche. I also contacted Dr. James Goydos, Director, Melanoma and Soft Tissue Oncology Program Surgical Oncologist and had he had suggested that Zelboraf (Vemurafenib) might not work since the tumor was surgically removed and hence the Inhibitor has no work to do !, I am very confused and lost at this stage with following questions :

1) Since this is an extreme rare occurence in India, which nearby countries have [color=#FF0000]Melanoma Specialist[/color] than mere Oncologist / Dermatologist - Singapore, Indonesia, Thailand, Hong Kong, China, UK, Germany, South Africa? since USA is too far from India

2) Will the clinical trials recruit indian / international patients as a part of the program for patients who have no insurance ?

3) If any international patients in the forum here have gone through having an online appointment with webcam setup with any doctor in USA?

Your replies will be a life saver for me !, God Bless !!

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jualonso's picture
Replies 1
Last reply 11/13/2014 - 8:39am
Replies by: mary1233
Happy_girl's picture
Replies 6
Last reply 11/13/2014 - 7:58am

Hello my melanoma warrior friends!  I just needed to post my feelings.  I don't know if my anxiety levels are so high because of melanoma and work and just life in general, but recently when I feel my clnd scar ( umm... I try not to feel my armpit all the time in public- work in progress), I get paranoid and afraid.  This might seem dumb but how do u tell the difference betweem scar tissue and swollen lumph nodes?  I'm sure I just need to relax, but I feel like right now seems like constant fear.  Thanks for your help and thoughts.  I value what you all have to say! :)

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5dives's picture
Replies 15
Last reply 11/11/2014 - 8:49pm
Replies by: Anonymous, 5dives, Teochasse, Squash, Janner, Linny

Hello all,

There is no better place I can think of to be talked off a ledge than right here. :-) I had my WLE / SLNB on July 10th (I'm 4 months out) and I had one micro positive lymph node in my groin. I have been advised to leave my nodes intact and to watch carefully, which I am fine with...although it's difficult to manage worry and stress. 

Saw my surgeon here in Chicago on Thursday. As he was checking my groin lymph nodes he said "Hmm...this could be a lymph node, or it could be water collected following your surgery. Your September scan was clear, and you're seeing your medical oncologist in December...let's keep an eye on it." 

In that moment, I felt fine with his decision to "keep an eye on it", but of course now I'm freaking out. 

Questions: 

1. Since I had a scan in September and it was clear, but I definitely have a swelling in my groin now, what would be the next step to investigate a possibly swollen node? Needle biopsy? Ultrasound? How does this work? 

2. Any thoughts on how a lay person such as myself might differentiate between a "problem" node and a "just fine" swelling? I have some very mild aching in my lower abdomen, nothing I would normally notice outside of the fact I have melanoma. I guess it could definitely still be surgical recovery.

3. Appointment with med. onc. is on Dec. 2. If the node is still swollen, what should I be asking for? 

Thank you very much. 

Best, 

Elaine

http://melanomadame.blogspot.com/

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Anonymous's picture
Replies 6
Last reply 11/11/2014 - 4:44pm
Replies by: lou2, Anonymous, Janner, kalisama, Carlos P

Anyone familiar with the use of dermoscopy or confocal scanning laser microscopy?  Both are said to be non-invasive.

Have had one lentigo maligna removed on back, big ditch there now.  Another one nearby just like it, said by different derm at teaching medical hospital said to be slow growing, just watch it.

Now I have a spot on forehead, thin skin only over bone.  It itches a little now and then.  Getting very scared.  Don't want another big incision, and don't know how they could do it at this location anyway.

So, looking for experience with these non-invasive methods.  And whether anyone knows of a place in the SE U.S. that does these first, before biopsy.

Thanks.

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GAngel's picture
Replies 7
Last reply 11/11/2014 - 1:20pm

I wanted to share the good news and update everyone on Rudy's health status. His last scan on July 25th showed no evidence of disease. The date of that scan was the 1 year mark of him starting the combo and 8 months NED status. His oncologist said that Rudy is one of three of his patients that are still responding to this therapy with Rudy being the patient with the most months of NED status! It's important to note that for the past 4 months Rudy has been on an intermittent dosing schedule of 2 weeks on combo 1 week off. He took a 1 month break from the combo back in April which was the month before he started intermittent dosing.  Taking a month off of the medication was Rudy's idea and he did not tell his oncologist until after the fact.  His doctor scolded him and said that Rudy had dodged a bullet and that what he did was "non-compliant" but he was smiling all the while and quite amazed that his scan was clear despite his rebellion.  

I'm sure that many are thinking that Rudy is playing russian roulette but it's not a decision that he made lightly. For him, it's a quality of life issue along with a strong belief in the effectiveness of the alternative meds he is taking.  I have shared before that Rudy has been taking hemp oil since May of 2013 (he was diagnosed stage 4 in February 2013).  We believe that the oil is playing a big role in his success so far in battling this disease.  The hemp oil  (he makes it himself) is not legal in this country, yet, it has proven healing abilities and is safer than any chemotherapy drug offered by the pharmaceutical companies. There are no side effects other than slight drowsiness. We know personally two melanoma patients who are both currently NED status and the only treatment they have ever done is hemp oil.   I am not suggesting that this is the answer for everyone...I'm just letting you all know that there are other things out there. Not all are "snake oils" just because they have not been FDA approved. Do the research...dig deep, it's your life...do all you can to save it.     

We also strongly believe in having a positive mental attitude and eating a healthy diet. Last but of most importance to us is holding on to our faith, knowing that it's all in Our Heavenly Father's hands.

God bless you all!

Gina  

 

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Anonymous's picture
Replies 7
Last reply 11/11/2014 - 11:34am
Replies by: Anonymous, oldblue, dodgedh2, Randy437, Carole K

Anyone here with mets (IIIC - IV) get long term success with surgery alone? 

I mean, 5+ years without recurrence.

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Anonymous's picture
Replies 12
Last reply 11/11/2014 - 10:08am
Replies by: oldblue, Squash, Ginger8888, Annalive, Anonymous, JustMeInCA, Janner

My father had his primary melanoma tumor removed in May 2014 by his general practioner. The spot was on his trunk. Once the biopsy confirmed it was melanoma, he was then referred to a general surgeon to have larger margins removed. In hindsight, he should have been referred to a medical oncologist for surgery rather than the doctor that did the surgery. At his first visit to a cancer center he was told the stage was a 'risky' IIC. On the Breslow scale it was a Stage V and a Stage IV on the Clarks scale. At the first visit, the oncologist told my dad the treatment options for melanoma were not great. The treatments often have harsh side effects without a lot of proven success stories to show they are succesful in extending life. Last month he had an axillary dissection to remove lymph nodes that were detected in a recent scan (the lymph nodes were on the same side as the orginal tumor and under the armpit area). The biopsy of the lymph nodes were positive for 3 lymph nodes with one being fairly large. His cancer is now classified as a Stage IIIC.

Last week he had a visit with the radiation oncologist where it was suggested he has radiation on the trunk where the original tumor was removed extending up to where the recent lymph nodes were removed. He was also told the chance of the melanoma spreading to the brain was fairly likely. He meets with the radiation oncologist later this week as well with the chemo oncologist to discuss treatment options.

My father is in 70's. He is still active (despite having a bit of a hard time recovering from the two surgeries listed above). He also has the following health concerns: high blood pressure, enlarged heart, hardening/calcifications of the arteries, gallstones, cyst on a kidney, colon diverticulosis, background of pulmonary emphysema, small lobe on lung (too small at this point to determine on the PET scan if it's cancer) and bronchiectasis.

While I wish my father would get a second opinion (going to a hospital where there's more of a focus on melanoma), I don't believe he will. When I read the messages on this board, there are obviously treatments that are working for lots of people and I would like to think there's a treatment option that is suitable for him.

I'm curious if any of you have relevant information for someone in a similar situation. After we watched my mother pass away from colon cancer 5 years ago, we know that quality of life is something we shouldn't take for granted.

My questions are: given the area they want to do radiation on, how tough are the side effects - 6 weeks for 5 days a week? I also question why they are wanting to do radiation since he's been told he has an agressive form of melanoma and the radiation is only treating a targeted area. I believe they will also suggest interfuron as a treatment option. The oncologist has already said the side effects can be tough and many people aren't able to tolerate them. For someone around my dad's age with less than perfect health, are there many success stories that show it works without having harsh side effects? Should my dad deny any further treatment, do you know of studies that show how long it takes for the type of cancer he has before there's a recurrence? Should a recurrence happen, is there typically an extended amount of time before the cancer causes such side effects that it's hard to go about your daily life?

I know some of my questions aren't easy to answer but hoping someone in a similar situation has information to share. I'll be going to the doctor with my dad later this week and want to make sure I'm helping to ask the right questions. There's a lot of information to find online but it's when I'm trying to combine multiple aspects that it's harder to discern the information.

Thanks for taking the time to read this.

 

 

 

 

 

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csellers23's picture
Replies 4
Last reply 11/11/2014 - 8:10am

My husband took yervoy 2 days ago and i havent been able to get him out of bed since. He had been on mek trfi combo but has been off them for 2 days. Hes hot then cold his body hurts everywhere. He said its like the flue times 10. Has anyone been through this since there first treatment. I dont know what to do.

Crystale sellers

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Ginger8888's picture
Replies 6
Last reply 11/11/2014 - 5:50am
Replies by: enatti, Ginger8888, DZnDef, Anonymous

Although this is not the pure oil that is really benefiting people, hopefully this will work, hoping one day they will approve the pure oil, the cannaboids in it's ingredients are what is "curing" some cancers..

http://illegallyhealed.com/fda-approves-cannabis/

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Replies by: Charlie S

Fly high, DT!  Sure gonna miss you, my friend!

 

~Lisa~

Life is NOT a journey to the grave with the intention of arriving in an attractive & well-preserved body, but rather to skid in sideways, champagne in one hand, strawberries in the other, body totally used up & worn out, & screaming WOOHOOO, WHAT A RIDE!!

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MixtaJones's picture
Replies 5
Last reply 11/10/2014 - 2:59pm

Hey everyone,

Long time since I have been on here. As a update I finished my last Yervoy treatment on July 11th. I just had my first 3 month CT scan and the orginal tumor is no longer there and there are no signs of it spreading to other  parts of my body. YAY!

My question is for those of you that have had Yervoy treatment and it has failed. Did it fail imediatly as in the tumors never shrunk or did it work initially then tumors came back further down the road? I am obviouly glad that the scans are clear but still not completly relaxed becuase I don't know how yervoy work long term.

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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