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.

Expand/ Collapse Topic
 
Replies By
View Topic
Wader's picture
Replies 2
Last reply 1/26/2015 - 4:18pm
Replies by: joelcairo, Momrn5

I ran across this article that really surprised me. It says one glass of OJ a day is fine but two can be deleterious. But the source was published in 2003. I hope there is later research. Does anyone know about the risk?

 

http://www.healthbulletin.org/vitamins/vitamins16.htm

Login or register to post replies.

Something I just read about that may help those with bone cancer:

http://www.scientificamerican.com/article/designed-molecules-trap-cancer...

Sugar-like molecules self-assemble into a nano fiber web around bone cancer cells but spare healthy ones

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

Login or register to post replies.

MindyD's picture
Replies 10
Last reply 1/25/2015 - 7:17pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

Login or register to post replies.

lizp's picture
Replies 9
Last reply 1/25/2015 - 7:11pm

Hi all, I'm newly diagnosed with metastatic melanoma in my left axillary lymph nodes with no previously diagnosed melanoma.  My Onc is recommending a clinical trial of high-dose Interferon Alpha 2B after my surgery, which is this Friday.  I'm afraid of the side effects of the Interferon, just based on what I've heard, but I'm also afraid NOT to do it because I don't want a recurrence.  If anyone has gone through this and can just maybe talk to me about it, or encourage me, I would really appreciate it.  I have lived with the knowledge that some type of cancer was back since around Thanksgiving of 2014 and I just want to get this ball rolling and get it out of me.  Thanks for listening and I hope to hear from someone soon.

Liz

Liz P Metastatic melanoma Stage 2 12/2014 Breast cancer IDC Stage 2 11/2011 Hope springs eternal!

Login or register to post replies.

aquamak's picture
Replies 3
Last reply 1/25/2015 - 2:57pm
Replies by: Anonymous, ecc26, KMick
JoshF's picture
Replies 17
Last reply 1/25/2015 - 1:00pm

What a long day but a good one. Pet/CT came back negative. This is obviously best case scenario. My onc didn't want to say for sure but feels that this could be residual due to immune system possibly not recognizing remaining cells form surgery. I had surgery in mid Spet 2013 and treatment started fairly quick after met was found in lung. I never had the surgery to get clear margins...I do remember the surgical onc saying that it may be necessary to go back in after treatment but it never seemed like a concern after I finished IL-2 last January.

Seeing that I'm NED again, the doc said watch & wait. Ipi was discussed but advised against because of no measurable disease. Again, they feel it's only a local recurrence.  Do they ever really know? I know there is not a lot out there for adjuvant treatment that is either available or effective. Anyone do ipi as "maintenance"?

I feel very blessed and fortunate as PET was clear...still gives me hope that I was repsonder to ipi & HD-IL2 combo trial I'm in. Things can always be worse but just having the beast involved in your world at all is stressful; which is why I appreciate each and everyone of you for your support, advice, inspiration and encouragment. Wishing everyone the best!

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

melfighter's picture
Replies 8
Last reply 1/25/2015 - 5:12am

My husband started Xvega last Monday, he seemed fine the 1st 2 days, but around Wednesday, he started feeling very tired and weak. The last 2 days he has not been able to get out of bed, just very tired and very weak. Prior to Xgeva, he was actually feeling much better and with the radiation to his back & sacrum,  he felt the pain was much more manageable.

I read that tiredness and weakness are side effects of Xvega, has anyone experienced the same thing? Is this temporary? 

Login or register to post replies.

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

 

Login or register to post replies.

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.

 

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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! 

Login or register to post replies.

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.

Login or register to post replies.

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

Login or register to post replies.

Pages