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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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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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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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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Jewel's picture
Replies 13
Last reply 11/16/2014 - 1:50am

My husband will be starting Yervoy in the next couple weeks. Of course my main concerns are to be on the outlook for any and all side effects. Can you please share with me your experiences and the things you may have had in the house to help combat them. Trying to be as best prepared as I can. Most importantly did it stable your disease? Thank you all so much for your help.

Jewel

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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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CHD's picture
Replies 5
Last reply 11/14/2014 - 11:09pm
Replies by: RJoeyB, CHD, Anonymous

One of you awesome folks posted a link to some informative You Tube videos in one of these posts in the last few weeks, which I forgot to write down, and I have been searching for that post to no avail.  Does anyone remember where that was, or could you re-link to those videos here, or in fact if you know of other informative videos, I'd love to hear about them.  I am interested in videos ranging all the way from the basics through the more complicated treatment options.  

Thanks so much!

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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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Colleen66's picture
Replies 4
Last reply 11/9/2014 - 5:07pm
Replies by: Colleen66, Janner, Anonymous

Is there any difference between Nodular and Cutaneous Mel?  And would a Second Primary (other leg than original) be the same type (look the same) or be different?

Thanks guys...Colleen

Live!

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yazziemac's picture
Replies 8
Last reply 11/10/2014 - 11:06am
Replies by: Anonymous, yazziemac, kylez, BrianP, RJoeyB, Marianne quinn, Bubbles

Hi 

I posted a few days ago with news that my husband, Pete, was just diagnosed Stage 4 because of a brain met.  The radiation oncologist told us very bluntly that he will live 18-24 months.  Now I read all sorts of posts on these boards of people with Stage 4 multiple mets who live much longer than that.  What gives!?!  Was the guy just a jackass?  Or am I deluding myself with hope that Pete could live for years yet?  I feel confused and, frankly, kind of mad.  We are waiting to meet the with oncologist (not the radiation oncologist) on Nov 18 and he'll talk to us about immunotherapy.  The radiation oncologist obviously talked with us only about radiation options. Anyways, I'm feeling angry tonight.  Angry, sad and a bit alone.  Thanks for being here for support. 

Yasmin

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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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My mother has seen her melanoma seed to the surface of her skin over the past five months. The tumors are localized to the original limb (leg), but are quite painful. The lymphoma she experiences does not help the pain she is in. She is a candidate for a procedure called a limb perfusion, which cuts off circulation to the limb and infuses it with chemotherapy drugs directly. This includes removing remaining lymph nodes. It is apparenlty a considerable operation to recover from but has the potential to cause the seeded tumors to recede for an average of 10 months. 

If anyone has experience with this procedure or caring for a loved one with seeded melanoma I would be very grateful to know. We are very concerned with how to reduce her pain. 

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Patina's picture
Replies 4
Last reply 11/9/2014 - 3:01pm

My Mom went in earlier in the week for her CT scans and the tumors are continuing to shrink or have completely disappeared.  When all of this started she had tumors in her: lungs, kidneys, liver, adrenal gland and 18 or so tumors on her scalp and one tumor the the size of a birds egg on the back of her neck. In addition she had 25 brain mets treated spanning two separate occasions (12/9/13 8 treated, 4/15/13 17 treated). 

Her doctors and we are thrilled and its been less that 1 year since her diagnosis and the start of treatment (12/9/13). She's done fantastic with Gamma Knife followed up with starting Yervoy within the week.

During this week's visit her doctor gave us some numbers to go along with what he believe's is her outlook is. Here it is:

Based on how she has responded to Yervoy (very quickly & all tumors) he believes that she is firmly in the group of people who, at 5 years, had needed no other treatment.  - 92% after 5+ years of tracking have had no other treatments and the 8% who needed additional treatment seem to respond to Keytruda ,as well as or better than, they did to Yervoy. So, we know the next step if one is needed.

Considering where we were last year and the fact that her brain mets were completely missed by the original radiologist she is one very lucky woman.  

I hope one day everyone has these results. Medicine/Science has come along way and the treatments can only get better from here.

 

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Replies by: Anonymous, Bubbles, BrianP

Dunno if anyone is still interested in Antibody Drug Conjugates but they have trials for them at Sarah Cannon in Nashville. I'm still planning on TIL first but thought I should mention it.

http://sarahcannonresearch.com/for-patients/search-clinical-trials/melan...

Artie

 

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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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