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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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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democat's picture
Replies 4
Last reply 11/15/2014 - 11:28pm

Does anyone have experience with Kaiser So. Cal.? Specifically Drs. Sherry Hsu and Helen Moon?  Also, has anyone been able to get Kaiser to pay for a second opinion outside of Kaiser>

 

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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arthurjedi007's picture
Replies 27
Last reply 11/17/2014 - 12:40am

Just got a call from my nurse a little while ago. The bad report I got last week was comparing the 11/3 scan to the 4/23 scan which I knew that's what they did. But they got my 8/13 scan from Mayo now and compared it.

Basically no new stuff and "only mild growth". Awesome :)

The main growth they are concerned about is the left scapula shoulder tumor which is already huge just not as much growth as they thought. Might do radiation or surgery in the future but not right now.

I was too dumbfounded to ask but I assume with a pretty good report like that I'll save TIL until some future date. I guess I'll still try to make the Chicago trip just to see what they say but not sure with my knee acting like it is.

What a relief. Not as good a report as some but it means Keytruda is kicking this stupid disease a lot better than they thought.

Thanks everyone.

Artie

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jualonso's picture
Replies 1
Last reply 11/13/2014 - 8:39am
Replies by: mary1233
adriana cooper's picture
Replies 7
Last reply 11/17/2014 - 12:29pm
Replies by: RJoeyB, adriana cooper, Tim--MRF, Anonymous, Bubbles

Post Ipi scan last month demonstrated some growth in existing areas of lungs and arm as well as some new ones not previously noted. Over the last 4-5 weeks Adriana has felt things are still advancing, Dr. agrees and has scheduled new scans in the next week or so with the plan to start Zelboraf for a few weeks then on to Keytruda ASAP although he is asking the insurance to go straight to Keytruda and skip the Zel. He wants to hold back Taf/Mek to be used later if tumors get out of hand. Some comments on this plan are welcome. My question (if some one could address) is can Taf/Mek be used after Zel? The info here in the MRF website suggests no on the targeted therapy section of the melanoma treatment page. Or should she start with Taf/Mek and then can she go back to it at a later time if needed again. I know there was some previous discussion of going back on but I can't seem to find it.

Not trying to second guess Dr. But he seems to think it's possible to skip the BRAF at this time but our research has only indicated that is not possible at this time.

TIA

Rob- Adriana's boyfriend

Adriana

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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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