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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JustMeInCA's picture
Replies 21
Last reply 11/28/2014 - 10:26pm

Hi, all -- still struggling with my 83-year-old dad's pain management. He was taking 15 mg Oxycodone as needed for pain because he didn't want the 12-hour Oxycontin, but that wasn't helping and he lost about 6 lbs. between his first and second infusion, I think because he didn't have much appetite due to the pain.

He started on Gabapentin (Neurontin) for the nerve pain, titrated that up from 300 mg to 600 mg only at night the past couple weeks (eventually aiming for 900 mg) and then added 20 mg Oxycontin about four days ago. He's had no issues with the Gabapentin, but the Oxycontin has had the zombie side effect -- he's barely left his recliner between his 6-hour naps! I lowered it to 10 mg today to see if it helps the side effects to move up more slowly.

At any rate, he was on the phone today with one of his childhood friends who battled another form of cancer last year. She told him to use cannabis, as that was the only thing that really helped her pain without knocking her out. (It's amusing to me that these two 80-somethings are having this conversation!) At any rate, Dad reported back to me that it's time for him to try marijuana -- I don't think he was completely serious, but it got me thinking.

We're in California, so medical marijuana is legal here, but I would have no idea where to start to find 1) a prescribing doctor (since I doubt the doctors at UCSF or his primary care doctor would prescribe it), and 2) the type and dosage. I did a search and saw that several people are using cannabis oil, so I'm just wondering if anyone (especially anyone in California) could give me some guidance. I've read that it has been shown to help with tumors, but I'm particularly interested in the anagelsic effects since Dad's having such pain.

I'll ask his oncologist about it next week, but I expect this is something we'd have to do on our own. 

Thanks!

Elaine

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I think I know but I would like to ask. Basically for Thanksgiving I made it to my sister's. But for the bathroom I had to go up 6 steps. Fortunately they have hand rails so I fell slowly. On the 6th step my lower spine and left hip lost all feeling and strength so I went down. After a minute I was able to walk ok again it just scared me a lot.

About 6 weeks ago I was doing my couple mile walks just fine. Then all of a sudden my left lower leg felt odd and I hobbled home. I haven't been able to walk right since. When I walk for about a minute the left lower leg starts hurting, I walk more and the pain includes my knee as well, walk more and various spots in my left hip start hurting as well as the left side of my left upper leg, walk more and my entire hip and leg start hurting like crazy and I can only sit down. Also almost constantly just sitting my left lower leg hurts and many times my left hip as well.

So combining all that I assume it must be a tumor pressing on my spinal cord again that is about to make me paralyzed?

I say that because last February the tumor in my t10 vertebrae was according to the med onc doc a hairs breath from making me paralyzed. If it grew a hair in a certain direction that would happen. The surgeon doc said anyone with that much spinal cord damage who received it quickly would already be paralyzed. Also one lift, twist, turn, etc too many I would be paralyzed. They couldn't do surgery so I got 2nd radiation to the t10 in March.

I'm not sure what else could make my lower spine and hip go out like that. Granted the only time I had something similar was way back in October of 2012 when I was washing my hands and had to grab the sink because I couldn't stand for about a minute. Even that back in February I had no clue. Back then my back was a little sore and I couldn't bend very good but that was about it. Now though my back seems ok and I can still bring my feet up to tie my shoes so I can do that bending ok. So I dunno.

I really don't understand this though because they didn't mention anything with my 11/3 pet/ct other than I only had mild growth and no new stuff since 8/13. They did mention on 11/4 they thought the tumor at the end of my tibia in my knee was causing my leg issue and they gave 5mg oxycodone pain pills. They didn't want me to do anything about it though cause they thought I could get into NIH which I couldn't cause by 11/11 I was wheelchair except for walking a little around the house. Still they wanted me to wait untl 11/25 so they could talk about what to do. I was excepting my med onc to have all types of scans lined up and maybe some nerve specialist to see or something. Instead I see his nurse practioner who just says we need to get you walking good again so you can get in one of these trials. I say yes we do and then there's silence like she had no idea how to proceed. So I suggested maybe I should call my radiation doc and she said yes that would be great. So I see him Tuesday at 3. He's the one that kept me from being paralyzed last March. I think I'll just write up all the symptoms so there will be no misunderstandings when they ask me what's wrong.

Artie

 

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rick1981's picture
Replies 3
Last reply 11/28/2014 - 2:40pm
Replies by: arthurjedi007, Jubes, BrianP

Hi all,

After the Stage IV melanoma diagnosis in early June (2 days after our daughter was born), my wife has been put on the BRAF/MEK combo with immediate results: the skin lesions disappeared in days, the first scan in August showed a significant reduction in tumor load and in October the PET scan was fully negative. We had hoped to be on our way to NED or at least to have a long run on the combo.

However, our MD called yesterday to let us know both LDH and plasma (experimental test to identify resistence against the combo) signal disease progress. We'll see him tomorrow and then have a scan early next week.

But it seems like the combo only lasted 5-6 months (high LDH values apparently correlate to a short impact period of the combo) and we're on to immunotherapy.

In principle that's not a bad thing, but it just produced a big dent in my wife's optimism and strength. She was convinced that with the combo, cannabis oil, supplements, yoga etc she would beat this thing against all odd. It's still possibly, but we'll have to move to Plan B and I'll do all I can to bring back her positivity and we'll keep fighting.

Will keep you posted,

Rick

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gaby's picture
Replies 1
Last reply 11/27/2014 - 1:15pm
Replies by: ltalley
You always gave me their support in difficult times so today I want to share this good news. Today we visited the oncologist with the result of SCAN, and everything is clean !! Thankfully, my husband two years and four months which is NED ago. Also my husband could finish with pegylated interferon tramiento, so now let's try to do a little more normal life.
 
We live an  emotional roller coaster. From diagnosis in June 2012 my husband had 38 years, everything was very difficult, but he's a fighter, and decided to make interferon for two years. He had several questionable PET and suffer much distress but thank God the beast yet to return ....
 
Greetings and thanks for the support.
 
gaby

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gaby's picture
Replies 3
Last reply 11/27/2014 - 12:29pm
Replies by: gaby, michaelinsocal

Hi, I'm very afraid again. Tomorrow my husband  (stage 3A for now, and 40 years old) has the horrible semester Scan (TAC).

Two weeks ago my husband ended two years of treatment with pegylated interferon. They were two very difficult years .... But he  finally finished the treatment,  now we  have to pray that the beast does not return.  Let's try to find a normal life again.

I have a lot of anxiety for the TAC. Please God help us ...

Regards.

Gaby

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ltalley's picture
Replies 1
Last reply 11/27/2014 - 11:48am
Replies by: _Paul_

I just wanted to say I'm thankful for family, friends, and this forum, and for being alive today. I know so many of you are going through terrible and difficult times, but I wanted to say stay strong, love every day, fight hard, and win!! Win for us, win for yourselves, and win for those of the future! May God give you peace, happiness, and endurance, but above all may He give you complete healing in mind, soul, and body. May Every One Have A Wonderfully Blessed Thanksgiving Day with lots of laughs, love, and memorable moments. And promise me no matter how sick you are or bad you feel that you will smile, just smile. Love to all!!! heart

Living Life!smiley

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mwcollins's picture
Replies 2
Last reply 11/27/2014 - 9:08am
Replies by: janetd, tschmith

I wanted to give all you warriors and caregivers an update on Kevin (stage IV since Feb 2014).  After a scare in August with a clean CT scan, Kevin had his routine PET scan and MRI today.  Both were clear to the doctor and one of his staff members.  A radiologist has to confirm, but according to the doc, Kevin is still NED!  Praise God!!!  He did get the opportunity to speak to one of the team members about a clinical trial that involves Yervoy and a vaccine.  Kevin has decided (with my blessing and the support of all medical staff) to hold onto any ammunition for when he has a high tumor load, or an inoperable tumor.  He feels good now, and is currently healthy and wants to enjoy that.  I see the benefits of being proactive, but support him in his decision. There is always the possibility of taking part in a clinical trial and still have a recurrance.  If that were to happen, I know he'd be extremely frustrated with putting himself through the pain and agony of the side effects of Yervoy...  Hold out until you really need it!  Don't pull the goalie yet.

I wanted to let you all know that NED is a blessing, taking life as a gift is a realization that we have all come to, and bottom line, life is precious.  Enjoy your Thanksgiving all.  Hug your families!  Love unconditionally, laugh hard, cry if you need to.  Support each other and know that we are all in it together!  Love to you all!!!

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arthurjedi007's picture
Replies 7
Last reply 11/26/2014 - 8:45pm

I was wondering if there is anything I should know before getting a port? Basically I understand it is a minor surgery. They put the thing in under my skin. It attaches to a vein that they said goes to my heart. It's under the skin so no problems with showering and things. After the surgery heals there should be little risk of infection. They can puncture the silicone thing hundreds of times so I can get my medicine and blood work that way now. It's just a little bump under the skin.

Just wondering if there is anything I should be concerned about getting a port? I also plan to have radiation to my left collar bone and left shoulder tumors. I don't know if the collar bone tumor would be in that area where the port is and could cause problems with it or not. Or I guess according to the wikipedia picture it would be further down but not sure.

I've only had 10 doses of pd1 but combine that with 4 doses of ipi and countless blood draws and scan sticks they have a really hard time getting the iv in for my pd1. They did get it the first try today but it hurt like crazy and would still hurt if I hadn't taken my pain pills for that, my leg and shoulder pains.

Artie

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/26/2014 - 2:44pm
Replies by: Jubes, Happy_girl

HI Everyone,

I am a stage IV patient currently NED 13 YRS AND 9 MONTHS  MPIP was a saving grace for me for sooooo many years and I hope all of you will find the love and support I found here.  I am still in touch witih many patients and caregivers I met here  We formed a bond of a lifetime together,

MPIP is a place to find a WEALTH OF INFORMATION,,  IF you have any questions ask JANNER or Jerry from Fauquat,  They know more than most doctors  lol  not kidding,  

Please do yourselves a favor and start the chat room going again, It was incredible support.  I am now on FB as well and I love love love beign there,  All of that being said...... THERE IS NO PLACE LIKE MPIP  You will get to know one another, your stories, your journey and you will form friends for a lifetime  

As difficult as Melanoa is , please look for the gifts,  there are many,

MELANOMA BROUGH BE TEARS

MELANOMA BROUGHT ME FEARS

MELANOMA BROUGHT BE SORROW

MELANOMA BROUGHT ME PAIN

MELANOMA BROUGHT ME HEARTACHE

MELANOMA BROUGHT ME ANGST,

MELANOMA BROUGHT ME ISOLATION

MORE IMPORTANTLY

MELANOMA BROGH ME SMILES

MELANOMA BROUGHT ME LAUGHTER

MELANOMA BROUGHT ME JOY

MELANOMA BROUGHT ME COURAGE

MELANOMA BROGHT ME STRENGTH

MELANOMA BROUGHT ME FRIENS

MELANOMA BROUGHT ME LOVE

MELANOMA BROUGHT ME FAITH 

MELANOMA BROUGHT ME BLESSINGS

MELANOMA BROUGHT ME PEACE

MMOST IPORTANTLY 

MELANOMA BORUGHT  ME THE OPPORTUNITY TO MAKE AMENDS TO THOSE I HAVE HURT

MELANOMA BROUGHT ME THE OPPORTUNITY NOT TO LEAVE ANY UNANSSWERED QUESTIONS FOR MY CHIDLREN

MELANOMA BROUGHT ME ACCEPTANCE

WHAT MORE COULD I ASK FOR

BIG HUGS EVERYONE.

LOVE AND LIGHT

CAROLE K 

STAGE IV  iT'S A BEAUTIFUL DAY!!! I OPEEND MY EYES TODAY!!!!  

 

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lsmith - MRF's picture
Replies 1
Last reply 11/26/2014 - 11:44am
Replies by: Julie in SoCal

Hi all,

The holiday season can be a hard and stressful time, especially for those who are battling melanoma (or have a friend, family member or loved one battling). Each year we receive calls from patients, survivors and caregivers asking for tips for coping with the holidays. To answer those questions and more, we're hosting a Twitter chat about "Coping With The Holidays" on Monday, December 15 at 2pm ET with special guest, licensed oncology social worker  Dr. Sage Bolte from Life With Cancer. Dr. Bolte will be on hand to answer questions like "How do I manage feelings of resentment or frustration", "How do I tell young family members why I dont feel well?", "How do I cope with the feeling of 'death' during a time that is supposed to be joyous?", "How do I honor a loved one's memory while still enjoying the holiday?" and more. 

We want to hear from you - what other questions do you think should be addressed? What questions come to your mind that you think would be hlepful for others? Please let us know in the comments below or email me at lsmithdyer@melanoma.org. Thank you for your suggestions and we hope you join us in the chat on the 15th.

Here is a link for more information about joining the chat: http://www.melanoma.org/get-involved/calendar-of-events/twitter-chat-cop...  

Lauren - MRF

 

 

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_Paul_'s picture
Replies 0

My sister is a family Dr. in Ontario, and she was visiting me last week. She suggested that I research palliative care now when I am still not feeling symptoms from the cancer. I thought palliative care was the same as hospice, but she said they were different, with palliative care more about pain management and quality of life.

I groveled around the SCCA website and they had this reference to a study that shows that patients receiving palliative care actually lived longer: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1000678.

I would love to hear your experience with it.

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Anonymous's picture
Replies 5
Last reply 11/26/2014 - 5:53am

When I was first diagnosed with melanoma (stage 3a) 12 years ago, when my 22 year old daughter was 10, I remember scanning this wonderful support forum for hopeful messages.  I thought it useful to remind people that many of us stop visiting this website as time goes on.  I had my second melanoma (caught early because I continue to be monitored )9 years ago.  I am not complacent as the future for all of us is unpredictable, yet it is important especially for newbies to know there are many like me out in the world. 

 

Jackie

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Jubes's picture
Replies 4
Last reply 11/26/2014 - 5:35am
Replies by: Jubes, arthurjedi007, Linny

I have been diagnosed with  stage IV in my lungs and lymph nodes and the doctors can't find the primary. In 2005 I had an amelanotic hutchinsons freckle removed. I had had it on my left upper arm for 2 years and various Drs told me it was nothing until I changed dermatologist. By then it was about two inches diameter        After that I was checked regularly for new melanomas and the dr always checked the glands in my armpits but that was it. Is it possible that I have had this melanoma for the past 10 years? My current oncologist thinks it unlikely that hutchinsons freckle was the primary but just wondering if anyone else had had that type of thing?

thanks

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Jewel's picture
Replies 16
Last reply 11/26/2014 - 12:36am

Hi,

My husband started Yervoy on Wed 11/19. Can you please tell me how long it took for you to experience side effects? Were they able to be contolled by medication? So far my husband feels fine. Thank you so much

Jewel

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