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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Patina's picture
Replies 4
Last reply 8/6/2014 - 4:13pm

Hi Everyone,

We got a second round of good news after treatment for my Mom.  She's had really good results with both ipi/Yervoy and gamma knife radiation so far.  Today her doctor reported that she had no new brain mets and that all the CT scans look terrific.  - The 18 tumors on her scalp are pretty much gone. Just a speck left really. When this started I'd estimate that if you had to measure the total volume of the masses on her head and neck that it would be about 1/6 of a cup. Maybe more...   - I could have strangled her when I found out what was going on. She didn't tell me! Stubborn lady!

The long and short of it is that this is another story of someone who's had a great response and things looked really grim a few times.  

Melanoma treatment has come a long way in the last few years and is only getting better. I hope in my lifetime melanoma won't be so hard to fight and that there is a cure soon. - Baring that, longterm treatment and management that give everyone the quality of life they want...

 

HISTORY:

My Mom was diagnosed in November of 2013 (age 77) and after seeing 4 specialists (one of which diagnosed her with brain mets that a radiologist "overlooked") and thinking about the options she opted to go with gamma knife radiation and ipi 4 days later.  

In short she had: 2 infusions, got colitis and thrush, had a few hospitalizations due to colitis, finally got the 3rd infusion, got colitis again and then a new radiologist (3rd) treated 16 new tumors in April...   

---Terrific tretment at USC in Los Angeles with Dr. Wong and Dr. Chang.  And many thanks to Dr. Peter Bosoberg at the Los Angeles Clinic. - He found the undiagnosed brain mets. 

 

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maradams's picture
Replies 5
Last reply 8/6/2014 - 4:56pm

My husband was diagnosed with melanoma last October, although given the depth and size of the tumor, he proabably had it for quite some time.    It was underneath his hair on his scalp.   He had the tumor removed and had a skin graft and underwent interferon treatments and Sylatron.   He had a PET Scan in April and they found tiny tumors in his left lung.    So in May and June he underwent Hi Dose interlueukin 2 (two rounds--13/14 the first time and 11/14 the second time).   He had a PET Scan on Thursday and it showed the tumors grew slightly.    Now the doctor wants him to undergo Yervoy treatments starting next Tuesday. 

My husband is feeling very frustrated.   We never got a second opinion, we went to Hershey Medical Center because it was close.     I tried making different appointments with different doctors from other hospitals (Johns Hopkins, U of PA, Jefferson, etc.) but always had to cancel because it takes so long to get an appointment and it never failed that those appointments fell on a day he was undergoing a treatment or a PET Scan.    My husband wants to try to go someplace else, however, he doesn't want to waste time by not going to the treatment next week.    I am at a loss.    I want the best for my husband, but I don't know where to go or what to do.    I called Sloan Kettering, but they told me that since he has already started treatments somewhere, they will not see him.   

Any suggestions would be welcome.

 

 

 

MSA

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Kdw2012's picture
Replies 5
Last reply 8/6/2014 - 8:35pm

Do you know if having a high mitotic rate plays a factor in recurrence or aggressiveness of tumors?

What has been your experience?  

My melanomas mitotic rate was 15 but It was also ulcerated

thank you

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Gene_S's picture
Replies 8
Last reply 8/6/2014 - 11:08pm
Replies by: Momrn5, Anonymous, arthurjedi007, Gene_S, CHD, ed williams
 
------------------------------------------------------------------
 
Interview with Dr. Russell Blaylock
 
 
see page 7 for melanoma
 
 
 
 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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DZnDef's picture
Replies 2
Last reply 8/7/2014 - 12:25am
Replies by: DZnDef, Gene_S

Hi all,

This may seem off topic, but I am really trying to limit my exposure to anything that could be harmful to my skin.  Is anyone aware of any skin products and cosmetics that contain only natural ingredients?  I haven't used lotion or make-up for a while now since I realize my skin and body are absorbing whatever I put on it.  I would love to learn about a natural/non-toxic healthy product line.

Thanks in advance,

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

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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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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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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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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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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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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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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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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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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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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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