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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Shelby - MRF's picture
Replies 4
Last reply 1/25/2015 - 12:42am

Dear MPIP Community Members,

Last week, Dr. Keith Flaherty recorded a webinar with us to provide an update on the research and key findings presented at the November 2014 SMR (Society for Melanoma Research) meeting held in Zurich, Switzerland. To access the webinar, please click here. Your name and email address are requested to track the number of visits only.

If you have any questions, comments or topics for future webinars, please contact me directly at education@melanoma.org. Have a great evening!

Sincerely,

Shelby - MRF

About Dr. Keith Flaherty

Dr. Flaherty is director of the Henri and Belinda Termeer Center for Targeted Therapies at the Massachusetts General Cancer Center and Associate Professor of Medicine at Harvard Medical School. Dr. Flaherty’s research and clinical focus is therapies for melanoma, with a particular expertise in targeted therapies.

About the Society for Melanoma Research

  • The SMR is an organization of scientific and medical investigators devoted to alleviating the suffering of people with melanoma
  • It was founded to unify the field by increasing communication among researchers and building bridges of collaboration between basic, translational and clinical investigators
  • The SMR holds annual meetings to provide researchers an opportunity to collaborate, meet and share ideas about all forms of melanoma research

 

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RGal's picture
Replies 3
Last reply 1/23/2015 - 3:33pm
Replies by: RGal, Anonymous, MattF

My father's melanoma is now metastasized to his lungs.  Awaiting PD-1 trial which starts in week.  He has been complaining of major aches and pains in his bones.  I am fearful it could have spread to his bones.  Is that even possible?  This waiting for treatment to begin is so hard.  Thanks.

 

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Lauri England's picture
Replies 3
Last reply 1/23/2015 - 2:58pm
Replies by: MattF, Mat, _Paul_

I had a Dr appt last Thursday and found that the mass in my lung had increased in size by 30%.  I also learned I 5th rib on my left side is fractured due to Melanoma.  My doctor put me on Tafinlar + Mekinist.  I started this immediatly that day.  Now today it has been 5 days since I have been on the medication and the lump in my neck had decreased in size at least half and I can breath.  I go for my first blood work tomorrow.  I am feeling so much better.  I do have a nausea problem but I was having that before meds and I control with Zofran.  I am feeling very hopeful and actually see the doctor again next month unless I have any problems.  Thumbs up so far.  I would love to hear from anyone else that has tried this medication combination...

Don't sweat the small stuff. There are bigger fish to fry!

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/22/2015 - 10:35pm
Replies by: Anonymous, Maureen038, JustMeInCA
Hello all,
 
 
 
my son - who is on Merck Anti PD-1 for 7 weeks started vomitng in he last few days. Is this a known side effect?
 
The drug exhausting him :-(
 
 
 
Thanks,
 

 

Mom

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manyhats's picture
Replies 3
Last reply 1/22/2015 - 9:55pm

What a great community!  It has been helpful to read your posts.

I was newly diagnosed from a punch biopsy with Lentigo Maligna LM (melanoma in situ) on the side of my nose in March. Prior to that my dermatologist had done two laser treatments (2011) of what had been considered a large lentigo and it kept coming back.  I asked for a biopsy.   He recommended Aldara cream.  A second and third opinion recommended surgery.  I had 2 pathologists review the slide: one said it was pre-cancer and not melanoma in situ; the other said it was melanoma in situ.  I’ve been doing some research online and interviewed several surgeons and found the information conflicting.  Meanwhile, the LM is growing and changing.  How do I choose the best surgical team since they all seem to recommend something a little different for treatment? For example:

One says MOHS for excision with margin control to minimize tissue loss since it’s on my nose and close to my eye.  Another says to take it all out with 1 mm margin and biopsy it, then do an extra 4 mm where needed.  Another will do a staged excision with 4 mm all the way around using a radial cut technique.  Peer review literature is also conflicting on margins on the face and best practice.

I was told to go to a “facial plastic surgeon” for the reconstruction since noses are difficult.  Of those I’ve interviewed: one says a graft from my cheek would  be done and another said I’d have a scar down to my lip in my smile line or up my forehead.   I hope to minimize the scars. 

I am amazed at the way so many of you are handling this frightening illness and the knowledge base contained here.  Thank you for sharing your experiences and any ideas you might be able to suggest.

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jwcollins's picture
Replies 8
Last reply 1/22/2015 - 4:04pm
Replies by: jwcollins, _Paul_, JoshF, kylez, Bubbles, DZnDef, Anonymous

First time here since 2002 when I had melanoma removed from scalp. Was just diagnosed with metastatic in my right lung, one larger tumor (7CM) and a couple more half that size. I finished pallative radiation today and am waiting to hear if I qualify for a clinical trial in Seattle. If I don't qualify, any advice? Surgery and chemo are not options I've been told. My oncologist is highly respected and I trust his advice but I thought I'd check here for other thoughts. Thanks! 

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Gene_S's picture
Replies 2
Last reply 1/22/2015 - 9:43am
Replies by: sweetaugust, JustMeInCA
It's Time for Bed. Are You Too Tense to Sleep? IMPORANT
 
 
Debbie Woodbury
 
A five-year breast cancer survivor, Debbie Woodbury writes and speaks about the emotional fallout of living with cancer. Her books, You Can Thrive After Treatment and How to Build an Amazing Life After Treatment share simple secrets to creating inspired healing, wellness and live out loud joy beyond cancer. Debbie blogs at WhereWeGoNow.com and is a Positively Positive contributor, and Huffington Post and Cancer Hope Network blogger. Debbie is a wife, mother, and a former very stressed out attorney.
 
It's Time for Bed. Are You Too Tense to Sleep?
The stress of cancer doesn't leave us at bedtime. Focusing on relaxation, rather than sleep, can get you the healing rest you need.
Monday, January 19, 2015
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
There is a time for many words, and there is also a time for sleep. Homer
 
The worry and stress of living with cancer often leads to insomnia. I often couldn’t fall asleep, or would pass out and be wide awake a few hours later, unable to get back to sleep. I had no idea how badly it was affecting me until my therapist pointed out how fatigued I was during an especially miserable session.
 
As I always tell my children, “When you’re tired, everything’s worse.” In my struggles with insomnia, however, I’ve learned that putting the focus on sleep doesn’t help. In fact, it often makes things worse by creating more anxiety.
 
Instead, I’ve learned I must back up a step and focus on relaxation. If I can relax, I can activate healing responses within myself, one of which is sleep.
 
You can’t go to bed and instantly relax if you’ve been anxious and stressed all day. The following steps will strengthen your relaxation muscle and help you face bedtime ready to sleep:
 
1.     Focus on the breath and meditation. Quieting your mind by following your breath in and out is the most basic form of meditation. All it takes is a quiet place and a few minutes a day. Practicing mindful meditation during the day makes it much easier to quiet the “what-ifs?” at night.

2.     Create quiet time before bedtime. The light from television, computer, tablet and smartphone screens stimulates the brain, which can disturb sleep patterns. Turning off all electronics and reading a book or taking a warm bath alerts the brain it’s time to wind down for sleep.

3.     Journal. Writing down your emotions and concerns on a regular basis can help ease anxiety. If you can’t sleep and are running through concerns in your head, try writing them down. Sometimes, just seeing your concerns down on paper and out of your head can help you get to sleep.

4.     Exercise. There are studies that suggest moderate exercise (such as walking) reduces the incidence of insomnia. (Strenuous or late-in-the day exercise does not have the same effect.)  In my experience, 30 minutes of walking in the morning absolutely helps me sleep better at night.

5.     Set a regular bedtime and time to get up each morning. A regular sleep schedule eases you into a good night’s sleep by alerting your brain to wind down for the night. 

6.     Create a comfortable sleeping environment. A bedroom which is dark, cool and quiet is the best for sound sleep. Remove alarm clocks that put out light, which is another source of unnecessary stimulation.  

7.     Avoid alcohol, caffeine and heavy meals before bedtime. Like caffeine, alcohol is a stimulant. While although alcohol may initially make you sleepy, it will often wake you up in the middle of the night.

8.     Treat yourself to a little TLC. Listen to guided imagery, drink warm herbal tea and curl up in a blanket. Nurturing yourself goes a long way toward relaxing your mind and body and preparing for sleep.

9.     Find support. Without other people who understand, cancer is exponentially harder to endure. Before I found support I was living in my own head without anyone to talk to who understood, which made for many sleepless nights. Support gave me an outlet for my emotions, fears and anxieties. Support helped me release what was keeping me up and helped me get to sleep.  

Maybe it’s just me, but the more I struggled with insomnia, the more worrying I wouldn’t be able to sleep kept me awake. It’s a vicious cycle that got me nowhere. It’s helped me to realize that a good night’s sleep always starts with the healing power of relaxation.

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

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My neck tumors are pressing on my throat now all the time. If feels like they are obstructing my throat. Last Saturday I made the mistake of eating solid food and I literally almost choked to death. Now I can't eat much. I have to sleep in recliner for my back but can't hardly sleep anymore with this stuff pressing on throat waking me back up all the time.

Any ideas what I can do for relief?

im supposed to start radiation tomorrow Monday but he says it will get worse before it gets better. I never did hear from my med onc surgeon as to why he couldn't surgery it.

my anxiety is through the roof. Even just sitting up and doing nothing I start choking. I think I only have a couple days fight left in me if I can't get relief.

i am so angry at myself for allowing that med onc to delay the biopsy 29 days. Stupid mistake. I didn't have this issue nearly this bad back then.

Artie

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Colleen66's picture
Replies 7
Last reply 1/22/2015 - 1:19am

Hi all.

I'll be brief.  I'm 3b after surgeries and Interferon, stable at two years this month.  Last chest x-ray in Nov. clear.  

In the last 3 weeks I have developed issues with my breasts.  Sequence of events are:  Swelliing left breast, at least a cup size, then pain in entire breast.  unusual puckering extending a bit downward from areola.  large masses of tissue formed, it's hard to describe but like a quarter breast would be very thick. the mass is very lumpy and the size of the masses will increase and decrease over a period of time.  I can feel at least 5 nodes in my neck but the area at the outside breast toward armpit is too lumpy and swollen to feel anything accurately.  The right side breast has followed the same evolution but with a two day delay. 

My Onc. scheduled a Diagnostic Mam and US for tomorrow.  I don't know whether to think that this is Mel or Breast Cancer.  Most benign issues of the breast involve breastfeeding etc.  I'll be 49 next month and had a hysterectomy in 1995 but still have ovaries.  No signs of menopause yet so I don't suspect this is Hormonal.  I scanned some breast cancer types and Inflammatory Breast Cancer fits.  I'm not convinced it's melanoma because of area and the pain, swelling and large masses involved.  

I know it's unusual to have biopsies during scan appointments but I feel like I can't leave that appointment without at least some type of biopsy.  Is this something they could possible do?  Should I become Miss Bitch and demand it?  With this evolving so quickly I don't thing a week between scans, biopsies, etc. is appropriate.  

I'm getting the tests done at the Comprehensive Breast Center (Stephanie Speilman Center) part of OSU Cancer Centers.  My Onc is at the James Cancer Center so it's all connected and I'm comfortable with that. 

This has happened so suddenly and quite frankly, I'm beyond concerned and pretty darn scared.

Any thoughts on this at all are welcome.  

Colleen

Live!

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Maureen038's picture
Replies 16
Last reply 1/21/2015 - 6:40pm
Replies by: Maureen038, Bubbles, Brendan, Mat, JoshF, Anonymous, BrianP

My husband compled his second VATS surgery this morning. His first VATS surgery was in October 2013. They removed a 4 cm nodule and a very tiny one. The right lung is cancer free for now and hopefully ever. He is at NIH and they are taking the tissue and making TIL cells to freeze in case he needs them.

There are a few very tiny nodules in the left lung and hopefully when he restarts Opdivo they will vanish!! We are feeling cautiously optimistic!! After so many ups and downs, it feels great to be in this place!! Best wishes to everyone!!

Maureen

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Jsneathen21's picture
Replies 9
Last reply 1/21/2015 - 3:58pm

Dr called! No signs of the melanoma metastasizing in the lymph nodes!! All clear!! Should be cancer free now!!!

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AshleyS's picture
Replies 5
Last reply 1/21/2015 - 2:44pm
Replies by: Bubbles, kylez

Hey folks,

My doc recently received the results from my 50 gene panel. I already knew I was BRAF wild, but the panel showed I do have a NRAS mutation. what questions should I ask about this? Any other advice? Thanks!

Ashley

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rick1981's picture
Replies 9
Last reply 1/21/2015 - 8:36am

Hi all,

I posted this week about my wife's (new) brain mets after a double seizure this week. They came on the day of the 3rd Pembro infusion.

We had a feeling Pembro was working as my wife has been very ill in early December after her previous treatment failed (new mets on scan of December 3rd vs October 27th; LDH moving up from 400 in October to 1300+ in December) and she started feeling significantly better as of her 2nd infusion on Christmas Eve - she went from bed ridden to being full of energy. LDH also dropped back to 600. Seemed like Pembro worked right away, which was what our onc also though.

However, we just read the full blood analysis that was done on January 14th, the date of her 3rd infusion, so basically showing the impact of 2 Pembro treatments. LDH has shot back up to 1300. So in the accompanying letter it seems that our MD is now unsure if Pembro is actually working (the new brain mets may contribute this his thoughts - although they could have also arisen during the "free fall" period between treatments).

Any thoughts on this?

How can LDH drop so quickly, my wife feel so much better within 3-4 weeks of Pembro, continue to feel good at six weeks and then see blood values that indicate it may not be working after all?

Apart from scans, what are other ways to get an indication of PD1 is working? Any other blood values to track?

Thanks!

Rick

 

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Jewel's picture
Replies 5
Last reply 1/21/2015 - 5:55am
Replies by: Mat, _Paul_, rick1981, Gene_S

Ken is going to have his 4th dose of Yervoy tomorrow. How long was it before you had a scan? From my understanding it is really the one taken 3 months after that they determine a responce? True, False, your experiences. Ken went into this with resected disease, but the node was bleeding and the size of a fist. Thanks for any and all help. They are also talking about possible maintanance doses?

Jewel

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JustMeInCA's picture
Replies 2
Last reply 1/21/2015 - 4:35am
Replies by: JustMeInCA, Janner

I have a question that I will ask my father's oncologist when I see him in a few days but that I thought I'd throw out here in case anyone has any thoughts or information.

My dad has now done four infusions of Keytruda, spaced three weeks apart. I've noticed that 3 days or so after each infusion, the fatigue hits him and his pain (both neuropathic and at the site of his leg tumors) goes through the roof. This lasts about 10 days (the Week of Hell for both of us), and then he's back to normal, better than ever. He then has about a week of feeling good before the next infusion comes.

The problem has been that he's so bad during the Week of Hell that he doesn't want to eat and loses weight. His appetite return afterwards, but he's still been dropping a couple pounds with each infusion. After his last infusion, we ended up not being able to get in until four weeks later, so he's actually now having two weeks, rather than one, of feeling good and has put a little weight back on.

What I'm wondering is whether it would be detrimental to space the infusions four weeks apart rather than three. He just turned 83, so it may be that the infusions are harder on him than on younger people; I don't know. But I'd like him to have the chance to have more of a breather between infusions and be able to enjoy life more, especially at his age when, melanoma or not, he can't count on a lot of years to come.

 

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