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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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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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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FayFighter's picture
Replies 3
Last reply 1/22/2015 - 12:06pm
Replies by: JoshF, FayFighter

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 8
Last reply 1/22/2015 - 11:51am
Replies by: Maureen038, kpcollins31, Fen, JoshF, _Paul_, SABKLYN, brewgirl68, Anonymous

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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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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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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POW's picture
Replies 5
Last reply 1/20/2015 - 3:05pm

Some of you may remember Don Lee of Worcester, MASS. Don was diagnosed out of the blue with Stage IV including brain mets almost 2 years ago. Don and his wife Janet fought valiently. He tried every available treatment and benefitted from most of them. Surviving 2 years with a widely disseminated melanoma is remarkable and he made the most of his time. He got to dance at one daughter's wedding and to see his first grandchild born and begin to walk. He enjoyed walks on the beach with Janet, downsizing to a gorgeous condo with no upkeep, and celebrating their 40th wedding anniversary and Cecelia's first Christmas. But eventually the cancer won out. He passed last Thursday. Here is a very nice obituary for Don Lee online. 

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