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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Anonymous's picture
Replies 3
Last reply 8/8/2014 - 7:51pm
Replies by: DZnDef, ecc26, Anonymous

Does anyone have any inforamtion about being able to drive after having gamma knife radiation surgery for brain mets? Links to webistes appreciated.

I am not finding much online about this and need to ask a doctor some questions.

There is no history of seizures, headaches...and more than one tumor treated. So far, there are no new tumors. There was a reocurance and treatment 6 months after the first treatment.  But so far no additional turmors have been found.

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Greg - kyle's dad's picture
Replies 3
Last reply 8/8/2014 - 3:54pm
Replies by: CHD, Anonymous

My son Kyle (Stage 3C, 4 years NED) recently moved to Colorado springs.  We are looking for a recommendation for a melanoma specialist.  I've heard that UC Boulder has a good melanoma center.  Can anyone recommend an oncologists there or anywhere near Denver/Colorado springs?

Thanks,

Greg

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Cooper's picture
Replies 3
Last reply 8/8/2014 - 1:28pm

I haven't seen his posts for a while and hope he's ok!

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rick1981's picture
Replies 0

One more topic from me this morning :)

I know QUACKERY isn't really appreciated on these pages, and many of the alternative treatments I've found on the web are labelled as just that on sites like cancer.gov. However, the only one so far where cancer.gov but also Sloan Kettering are actually fairly positive about is Zyflamend (called Zyflamax in Europe). It's a mix of tumeric/curcuma and 9 other herbs/spices and Sloan Kettering has actually conducted several studies on it - surprisingly. They now say "Zyflamend may have additive effects" to chemo. And there is a recent article on melanoma as well: http://www.agt-info.org/Documents/2014%20Annual%20Meeting/HANDOUT%20Yo%20-%20Student%20Research%20Award.pdf

Anyone here with experience using this for melanoma?I didn't come up in the search.

 

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Hey everyone. I just got my radiology report from a CT I had done on Wednesday. Good news is that the tumor in my upper left axila (lymph node) has shrunk from 3.3cm to 2.2cm from with yervoy or radiation or both. Bad news is there is a 5.4cm platelike mass in the apex of my left lung. The notes say it can either be signs of matastasis or it may be caused by the radiation done to my upper left axila above my lung. Has anyone had experience with a mass or imflination of the lung from radiation? I am nervous but meet with Onc tomorrow to go over results. 

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

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Happy_girl's picture
Replies 9
Last reply 8/7/2014 - 9:59pm

I'm looking for opinions.... Sloan Kettering or Dana Farber?  Is one better than the other?  What are your opinions?

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Insight, Analysis & Opinion

Discerning the importance of Merck's pembrolizumab likely becoming the first PD-1 therapy to reach the market in the US is challenging. From a sentiment perspective, a confirmed PDUFA date for October 28 has helped to drive conviction among Merck's investors that the company has gained ground on Bristol-Myers Squibb, which 12 months ago appeared to have a more discernible lead in this particular race.

From a commercial perspective, the data generated for pembrolizumab suggests that once approval for Yervoy-refractory (i.e. second-line) melanoma occurs, there will be earlier usage of the product in the treatment paradigm. Indeed, when FirstWord polled 70 US-based oncologists after the ASCO annual meeting in May, they suggested that based on currently-available data they would prescribe pembrolizumab to around a third of first-line patients in an off-label capacity – a trend that could be enhanced if Merck's drug also receives NCCN guideline support.

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sally1980's picture
Replies 6
Last reply 8/7/2014 - 2:17pm
Replies by: scots, Anonymous, brittanyx, Fen

I was recently diagnosed with a t4 tumour on my chest. My pet scan was clear and my sentinel lymph node biopsy was clear, which puts me at stage 2b.

I went to see an oncologist today who recommended going on interferon for a year because the melanoma was on my chest. My surgeon isn't so sure it is necessary so I have to make the decision!

Everything I read on this makes me more confused, I was wondering if anyone else has been in a similar situation and can offer some advice.

I have two young children and live abroad so I'm not sure I will have the support I need to get through such a tough year. Would appreciate any advice!

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brittanyx's picture
Replies 8
Last reply 8/7/2014 - 2:07pm

I'm starting interferon Monday and it bothers me reading so much negative stuff about it on here and I just would like to hear the positive. So, I was wondering if anyone has done interferon and is NED or has been NED for awhile now or knows anyone who is.

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BrianP's picture
Replies 25
Last reply 8/7/2014 - 10:41am

Your comments on the NED thread really hit a chord with me.  I've been thinking of that very topic quite a bit lately.  G-Samsa, like you I am in a Ipi-Nivo trial and like you I've had a about a 50 to 60% percent reduction in tumors initially and now seem to have reached a stable status.  I did not realize what a common response this was with the anti-pd1 drugs until watching the immunotherapy presentation I posted several days ago on OMedlive.com.  G-Samsa, I think it may have been the study you are participating in which they posted the graph of responses.  If I remember correctly the graph I saw only showed one complete responder and the rest of the responders acheived a stable result at around 30 weeks that seemed to be pretty durable.  Joe you summed it up much better than I can about all the implications surrounding living with this disease.  G-Samsa, I read your comments from your doctor with great interest concerning his/her belief that our immune system should now be able to do the job on it's own.  My doctor and I have just briefly talked about the subject.  He made an interesting comment about options down the road so "I don't have to be on nivo the rest of my life."  I believe he's thinking about options like SBRT for two small tumors I have remaining.  It will be real interesting to see where the medical community falls out on this subject. 

I really don't like the idea of living with stable disease but I know there are many on here that would do anything to be in my situation right now so I know it's a true blessing.  Many of you probably read T.J. Sharpe's blog.  He made a great comment the other day on his blog: "stable is a tie, a tie is a win, even if it's not the result we desire." 

Brian

 

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CHD's picture
Replies 14
Last reply 8/7/2014 - 10:11am
Replies by: CHD, Colleen66, Janner, Anonymous

Hi!  New here.  Have been following this site for awhile and I need help.  I have been dealing with vulvar melanoma, and what I'm wondering is if anyone here could explain the difference between satellite, in-transit and new primary melanoma in terms of local regional recurrence?  How are they different?  Do any, or all of them, mean that you have had a local recurrence/metastasis of melanoma?  Does this affect your overall prognosis for the worst?

I had a right radical vulvectomy last May.  Then in October a left-side vulvectomy to try to even things out, I was so uncomfortable, but during that surgery melanoma in situ was found.  The problem was, it wasn't evident on my skin and totally unexpected so the specimen sent to pathology wasn't oriented, and we didn't know where it had been, just that it was there somewhere and went all the way out to the margins.  I have had vulvar biopsies and just had a third hemivulvectomy trying to find the MIS, which also failed to locate it. :(

But what I'm wondering is, the original melanoma was on the right, removed by surgery with clear, 2 cm margins all the way around.  The MIS was found 5 months later on the left, totally separated from the one that had been on the right.  So would that be considered an in-transit melanoma, a satellite lesion, or a new primary developing?

I know I should probably wait until I see my oncologist in July to ask this, but it is driving me crazy, wondering if I have had a local regional recurrence and if that changes my prognosis to worse than it already was.

Any thoughts would be appreciated!

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/7/2014 - 7:25am
Replies by: Ginger8888, Anonymous

People with moderate-to-severe Vitamin D deficiencies are significantly more likely to develop Alzheimer's disease or other forms of dementia 

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Anonymous's picture
Replies 9
Last reply 8/7/2014 - 6:58am
Replies by: Anonymous, Crystal0702, Charlie S, LynnLuc, Janner

I was recently diagnosed with melanoma in situ.  I want to ask the MD the right questions.  What things should I be asking?

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jej's picture
Replies 7
Last reply 8/7/2014 - 1:29am
Replies by: kylez, DZnDef, jej, Patina

I was wondering If anyone could give me some advice?

My Dad was recently diagnosed with melanoma in January this year. He had a wide excision of a mole on his back which was > 4mm depth. A CT scan showed axillary lymph node spread and he went on to having alymph node dissection in April this year. Seven of the thirty nodes were positive for melanoma and was due to have radiotherapy in June but a pre-arranged CT scan done a couple of days prior to starting radiotherapy showed up new nodules in both lungs which the radiologist and oncologist are convinced are melanoma but say that all nodules are too small to biospy. They both suggested leaving alone and scanning in 1 month which has just been done. They then said if the nodules had grown they would start vemurafenib. Dad has his scan and went to see the oncologist yesterday. The nodules have slightly increased in size in some and not in others. They have again suggested scanning in 6 weeks time and again starting vemurafenib if they have grown or sooner if Dad becomes symptomatic.  At present Dad is not symptomatic at all, in fact he feels better than he has for a long time. Does this seem reasonable? ?..

My Dad is 72yrs old and has had a kidney transplant 2yrs ago. His Transplant team have stopped 1 of his immunosuppressive drugs and halfed the other with no issue to his kidney function. The oncologist is a melanoma specialist in Manchester (we live in the uk) and is reluctant to start ipilimumab at the moment but will do in the future when needs to.

I really don't know where to start. 

 

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Hi,

I am 33 and I have a lot (30+) of moles that my dermatologist called nervi... something. Some are bigger, some are smaller.

A few of them are bigger than 6mm and a few have irregular margins. I never had one removed.

I go to a check-up every 5-6 months, and the question is always "have you noticed any change?".

Well I did not Notice... but what if I am wrong?

My dermatologist checks every one with a dermatoscope (I think it's called). 

 

My question:

Is he able to see the Danger / change / etc with that instrument? I worry that I was unable to notice a change in some, and... well I don't want to... you know.

 

Thank you.

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