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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ecc26's picture
Replies 8
Last reply 1/28/2015 - 7:33am

Hello everyone, 

It has been a very long time since I've had a presence on this board. I was hired by our local university in July last year and have been so busy between my treatment schedule and work obligations that I have completely lost touch with this board and the people who are on it.

I am happy to say that I am doing very well. I started PD-1 last June in Boston, which only lasted for 4 doses before the discovery of a 3.5 cm mass in my brain put things on hold. The mass was surgically removed in September and I did well enough pre and post surgery to only delay my next PD-1 by a week. By then FDA approval had come through and I've been able to get my infusions here at my local hospital, which has been very nice. My scans continue to improve, with my last CT in December and my last MRI on Jan 14 (they are not grouped together due to the craniotomy). The hope is that perhaps by this time next year things will have shrunk down enough or been stable long enough to consider a trial period without infusions. I haven't had the best of luck in the past with things lasting (or even working), but I hope that this is the one that does it for me. I had forgotton what it felt like to not live in such constant fear, though I don't trust things quite yet.

I'm really enjoying my job and feeling well enough to do that and get back into a regular exercise routine, etc. I'm aware that some of you are not getting the results you were hoping for and all I can really say is that I'm pulling for you. 

Wishing everyone out there the very best and hoping that you find the thing that really works for you!

-Eva

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BrianP's picture
Replies 7
Last reply 1/28/2015 - 7:20am
Replies by: Maureen038, Jubes, Anonymous, Julie in SoCal, Bubbles, Mat

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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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Replies by: Maureen038, arthurjedi007, JustMeInCA, JoshF, Bubbles, Anonymous

Among everything else I'm dealing with they found out the reason my right hip was hurting a lot is because the hip ct yesterday showed a lesion there. He said that was not there on my November petct scan. Since I've been on keytruda since May with a few tumors showing minor growth but no new tumors and other tumors shrinking does this now mean keytruda is failing me so if I get through my current issues I gotta get on a different systemic treatment fast? radiation to hip starts soon to end at same time as rest of radiation.

Artie

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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

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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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Hello, My name is Mike and I'm reaching out through this forum in an effort to find those individuals with similar diagnosis and test results.   Here is my story, diagnosed with Malignant Melanoma on October 30th 2014 by my dermatologist.   She explained that the mole on my back was malignant and that due to the depth of the cancer cells (5.5mm) and that it was not ulcerous, that I was Stage IIb.   She referred me to a Plastic Surgeon and an Oncolagist with the Cleveland Clinic.  In meeting with the plastic surgeon I was told that the treatment approach was aggressive.  On December 2nd, 2014, I had the radioactive dye and scan, along with the excision of the original mole/tumor site on my back.   They removed the one and only lymph node that showed the dye in it, from my right armpit.   Biopsy report of this lymph node showed that I had cancer cells in the node up to 50%.  The biopsy report on all the meat they took out of my back was also negative. The oncalogist ordered up an MRI (without and with contrast) and a PET/ CT scan. Both came back negative.  Last Thursday (January 15th, 2015) I had all the lymph nodes removed from my right armpit (23 of them).  Yesterday in my surgery follow up appointment, I was informed that all 23 lymph nodes had no cancer traces in them.   I meet with the oncologist on the 26th to discuss treatment options.  

I am a 52 year old male in very good shape.  I am a single parent of a 16 year old and a 19 year old.   I am weighing the scales of decision making as it regards the Interferon Alpha immuno therapy treatment drug.  I have concerns about the side effects during treatment, and the potential side effects that could last the remainder of my life.   My daughter is at home with me and my son is away at college for 8-9 months of the year.  If I were to choose the Interferon, I have a fear that I would put my daughter in a position as care taker for me for the first month - 2 months of treatment.   I have a fear of losing my job if the side effects were so severe that I couldn't work.

I guess what I am looking for is individual(s) who have had very similar diagnosis and test results and what path they took.  I'm not looking for someone to make my decision for me.   I would just love to hear from people that have been through it.   Thanks.   Mike

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Jacqueh27's picture
Replies 3
Last reply 1/26/2015 - 6:21pm
Replies by: tschmith

Still waiting on my daughter to get scans after liver embolization and four rounds of YERVOY. Anybody have embolization and if so, how much did your tumor shrink if all?

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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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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!!!!

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FayFighter's picture
Replies 4
Last reply 1/26/2015 - 4:47pm
Replies by: FayFighter, JoshF

Hi Warriors

Last time I posted it was good news; 30% reduction in liver lesions.  However, it seems the inhibitors are petering out now.  Next best step?  We love team at MSKCC but you guys always get me thinking.  All advice and suggestions welcomed.

 

Recap;

Husband is 45 y.o. Irish, blue eyes...raised on the jersey shore (lots of sun exposure).

July 2010 Melanocytic Nevi removed from left calf. 

F/U with Derm exams x1/6 mos

June 2013 Nodules appear under skin on left calf. We thought they were vericose veins.

July 2013 Swollen left lymph node in groin area. Biopsy.  Melanoma. BRAF WT.

Slide from 2010 reread by MSKCC as melanoma in situ

August 2013 Lymphadenectomy of left groin.  Just uppers Cloquet node negative.  5/19 nodes positive.

October 2013 Start Yervoy

November 2013 Radiation to Lymph node basin of groin

January 2014 Prednisone needed to control colitis from yervoy. Genomic Studies show NRAS positive.

March 2014 End Prednisone

April 2014  PET/CT Scan shows 3.5 cm lesion in fundus of stomach. Confirmed through biopsy.

May 2014 start PD1/KIR trial

July 2014  too much bleeding from stomach tumor.  Surgery to remove. 

July 2014 Scan shows mets to liver.  numerous.

August 2014 Start MEK/CDK4

October 2014 30% Reduction in liver lesions

November 2014 20% more reduction

December 2014 Stable Lesions.  Heart EF low...need to lower doses

Today Scans...new Liver lesions.  Subcutaneous lesion on back.  Maybe on ribs.

 

Options: checking HLA-A2, if positive candidate for IMCgp100 (Monoclonal T Cell Receptor anti-CD3 scFv Fusion Protein) IMMUNOCORE trial at MSKCC.

Options: Speaking with NIH nurse tomorrow about IL2 trial eligibility.

 

We did a big tumor genetic profile test of in September at MSKCC.  Still waiting for results.

 

What would you do?????

 

Thanks in advance,

 

Angela (wife of Mike)

 

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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!

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AshleyS's picture
Replies 13
Last reply 1/28/2015 - 9:53pm

Since being upped to Stage IV nearly 5 weeks ago, I've done a lot of research concerning alternative medicine and diet. I've also had a lot of people reach out to me who are melanoma survivors and other cancer survivors. It seems like all of them made drastic changes to their diet. Many were also treated holistically. What have some of you done concerning alternative medicine and diet? One problem I am having is contradictory opinions and research. It makes it difficult to know what to do.

once again, I'd appreciate anyone's advice! Thanks!

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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

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