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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_Paul_'s picture
Replies 9
Last reply 1/2/2015 - 11:19pm

Had a CT on 12/30 and got the results yesterday. Overall the tumors in my liver and lungs are stable with one showing a small decrease in size (I think this may be the one that was blasted with radiation as part of the radiation +ipi clinical trial I am on). The larger on in my gall bladder has grown about 50% and the next step there is to get the opinion of melanoma surgeon (Dr. Byrd) as to removing the gall bladder.

But IMHO this is fantastic news! My last scan was 4 months ago and the one before that was 14 months ago. The 14 months ago was one clean and the 4 months ago one showed multiple mets and a 1 inch tumor in my gall bladder. That seemed like pretty aggressive growth to me so I was prepared to hear that my tumor load had doubled or worse. But stable except for the one tumor which is hopefully resectable? Amazing!

I am a software engineer with a math background and I could not help but think about the statistics which are definitely not on my side. But I kept getting hope from all the warriors on this board and amazingly (for this scan at least) it looks like I get to report some success too. Woohoo!!!

Happy New Year everyone!

- Paul.

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/2/2015 - 9:48pm
Replies by: StephyD83, jmmm, kylez

Hi everyone-

What we're your symptoms of brains mets?

For the past week and a half I have been having some strange things going on. I have a dull headache that feels like my temples are being squeezed and my mind feels foggy. My husband will talk to me and I feel like I'm not sure what he is talking about or I can't think of the right word when I am trying to speak. My husband just asked me what is going on as he said I seem strange lately. I feel strange but I don't want to seem like I'm over reacting.
Thanks!

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Tim--MRF's picture
Replies 4
Last reply 1/2/2015 - 3:06pm

I am on the east coast and am writing this 12 hours before the end of the year. I thought I would take a minute to reflect on 2014 and prognosticate on 2015.

This past year saw a lot of big things happen in the melanoma space. For people with metastatic disease the biggest development was the approval of two different anti-PD1 drugs. These drugs are likely to be the standard of care for the near future and the backbone for a number of effective combinations in the years going forward.

Also this year the US Surgeon General issued a Call to Action for Skin Cancer Prevention. This is a major step in putting the voice of the nation's doctor behind prevention efforts. The document provides a roadmap of the kinds of activities that will have the biggest impact on changing sun safety habits. 

Just recently Congress approved a budget that provides significantly more funds for melanoma research. These funds are managed through a medical research program in the Department of Defense and melanoma is one of a handful of cancers that is eligible for funds. Two years ago the pool of available funds was $10 million. This year it was $25 million. The new budget for 2015 doubles that to $50 million. Not all of this will go to melanoma, of course, but this should mean several million dollars in additional research support.

In November, melanoma patient advocacy groups from around the world met to discuss forming a global coalition for melanoma patient advocacy. This is a first, critical step in organizing a global voice to address issues such as increased awareness, access to clinical trials, and access to new and emerging therapies.

Of course the real story of 2014 is told in the people who have been affected most personally by melanoma. I cannot reflect on the past twelve months without remembering the people who I have met, who have called me, and whose stories I have heard here on this board. I remain deeply impressed by the quality of information that is shared here and the caring tone in which that information is delivered.

The people on MPIP are an amazing family of individuals who routinely impact the lives of others in positive ways. Just last week someone posted about being told by a nurse practitioner that she had Stage IV melanoma. The news came on Christmas Eve and was devastating. Fortunately this person questioned the news and many people on this board wrote to confirm what she suspected--she was Clark's Level IV, not Stage IV. That patient's family time over the holiday was transformed by the quick, informed, and caring response of others on MPIP. And that is a story told over and over again during 2014.

What can we look forward to in 2015? I wish I had better answers, but I think it is unclear.  Here are some thoughts:

--I suspect that studies will show that PD1 drugs can and should be used as first-line therapy, rather than being given only after ipi and BRAF inhibitors.  

--I suspect data will mature showing that ipi and anti-PD1 is a very powerful and important combination.

--Some of the intralesional therapies will mature and may even be up for approval. This includes oncolytic viruses being developed by Amgen and Viralytics, as well as other agents such as PV10 being developed by Provectus. These will likely be used in combination with other immunotherapy approaches.

--I hope that some adjuvant data will begin to mature and we might be offered better options for people who are NED but at high risk of recurrence.

--We will see new progress in ocular melanoma, and greater attention to mucosal melanoma. We will also see more attention being paid to children with melanoma and will have new insights into this phenomena.

One thing I can state with no hesitation, however:  The MPIP community will continue to support people with melanoma, and by doing so will give everyone who reads these pages the information and care they need to live as long and as well as possible.

Thank you for this, and may we all have a healthy and hopeful 2015.

Tim--MRF

 

 

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

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Rosegargala's picture
Replies 6
Last reply 1/2/2015 - 10:49am

If I have it does that mean I will be fighting new melanomas all the time ?

Roseyes

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mwconklin's picture
Replies 4
Last reply 1/2/2015 - 8:14am

Hi, 

I was diagnosed in 11/2012 as stage 3. Went through 3 surgeries and Interferon treatment. Last summer my Oncologist passed away and I have yet to get a new one. I have been enduring some major headaches and terrible pain on the right side of my neck. Just this week i have developed a dark spot on my left ring finger just above my wedding ring, (no discomfort at all). Of course anxiety is in full swing, can anyone lend advise?

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/2/2015 - 4:52am

Hello all,

There's loads of great posts on this forum about treatments, but I didn't find anything about the period when switching from one treatment to the other.

My wife is Stage IV, diagnosed in June after several weeks of fever & lesions under her skin appearing, and after many blood tests they ultimately discivered metastatic melanoma after a CT scan. All major symptons disappeared within the first weeks of being on the Dabrafenib/Trametinib combo and her tumors started shrinking on the following CT scans and ultimately she become PET negative on October.

However, on the next scan in December tumor growth was observed, not only in the main sites (liver, spleen) but now also in her bones in several places. We're now onto immune therapy.

Since it may takes weeks, if not months, for that therapy to work, we're in a free fall at the moment. Her condition is worsening and we feel new nodes under her skin. The fevers and night sweats are also back.

So I have two questions:

- Is there any data on how fast the immune therapy typically needs before it kicks in? I know averages are not very useful here, but maybe there is % after x weeks, % after x+2 treatments, etc information.

- How did you feel in this period in between treatments? Did you feel worse, did you get additional treatments, were you hospitalized? How did you cope with it mentally.

For my wife it's very tough as we believed we were on a path to some type of recovery, but now not only is the tumor growth back, so are the symptoms, so it's like starting all over again which is something she had blocked out as a possibility.

Thanks for sharing your "free fall" experiences, and we hope that the parachute will open soon!

Thanks, Rick

(PS. I have posted here several times before but wanted this post to be anynymous for personal reasons, hope you understand)

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csellers23's picture
Replies 7
Last reply 1/2/2015 - 4:24am

My husband is to have srs done in four places in his brain over the next two day. Tonight his fear is worked up and he has doubts if he wants to go. He had wbr back in september and it took him out after about 3 weeks after treatment. It has given him short term memory loss to this day and mad him very sleepy. he has fears that they might hit the worng spot and cause brain damange his nerves are bad right now. we are on yervoy in two weeks we get our 3 dose and after srs they want to treat his rib spine and back with radiaion oh and chest anyway we are looking for others who have been here and can tell me what to expect or what it was like. we dont have to do the halo by the way. thank you

Crystale

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newmanmark's picture
Replies 4
Last reply 1/1/2015 - 4:12pm

I have been dealing with stage 4 melanoma for the past 2 years.  I have two tumors in my pancreas.  I live in canada and there is a trial here that combines a Mek inhibitor + Braf inhibitor and the anti-pd1 drug.  I was wondering if anyone on here is on one of these combo drugs and I would like to know how you are doing?  Are the side effects tolerable?  Have you seen tumour regression or stabilization?  My understanding is that these are early trials.  

Thanks

Mark

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With the pain in my hip, leg and shoulder I finally started taking these pain pills. They are oxycodone HCL 5 mg capsules. I had been fighting taking them but I found that worked out to taking more in a day. For now I can get by on 1 at about 10am and 1 at about 5pm. Dunno if I will need more in the future.

First and foremost I was wondering if they hinder the pd1 from working? Dad thinks they help the healing because I'm more relaxed instead of all tensed up in pain but I dunno.

I know they do something to the central nervous system and spinal cord making me feel like I have less pain. I know the common side affects they can also cause is nausea, vomiting, constipation, loss of appetite, dizziness, headache, tiredness, dry mouth, sweating, itching. When I was taking 2 at a dose so about 4 a day I noticed I went into withdrawal if I didn't take another within about 20 hours. I would feel achy but about 10 minutes after taking just one all the achy feeling went away so at least I think that was withdrawal. Since I'm taking them regular now I don't have that.

So I guess my main concern is they don't hinder the pd1 from working. I'm trying to get off them. Thanks to the radiation I think I can put up with the pain in the hip and leg but the shoulder even with heating pads and ice packs is just too much for me anymore without these pain pills. Hopefully I can get the shoulder treated sometime in the future too but I think I'm going to be on them long term so I wonder what they are doing to me. A few months ago my doc mentioned I was doing good and one of the things he mentioned why is because I wasn't taking pain pills. So I'm really wondering about these pills.

Thanks.

Artie

 

 

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arthurjedi007's picture
Replies 3
Last reply 12/31/2014 - 9:09am

I was wondering if anyone has heard from Shane? He did the TIL harvest and they had his cells ready but he was in too much groin pain so he was getting it radiated then was going to continue with TIL. That's the last I heard.

Artie

 

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laural10's picture
Replies 5
Last reply 12/30/2014 - 8:18pm

My father was just diagnosed in July with MM of the nasal passage.  He went through 3 surgeries to try to get to clear margins, unsuccessfully.  He is now undergoing radiation (6.5 weeks, five times per week).  He is three weeks in and the side effects are so brutal they might have to stop the treatment.  He has severe swelling, sores and bleeding in his mouth, nose and lips.  He has lost 15 pounds so far and is unable to eat other than Ensure and even that is becoming difficult.  We are afraid he will choke to death in his sleep from the swelling of his mouth and throat.  His radiation doctor said she has never seen side effects this severe before.  I was just wondering what your experience was like with radiation and if you are able to give any suggestions on what helped you get through it?

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Shelby - MRF's picture
Replies 1
Last reply 12/30/2014 - 3:52pm
Replies by: Sfern5

Dear MPIP Community Members,

I wanted to let you know about the upcoming patient and caregiver symposium at MD Anderson Cancer Center on Jan. 31, 2015. We have planned a really strong and exciting agenda and are excited to return to MD Anderson in 2015. If you live in the area, we hope you will be able to attend. Registration information, the agenda and a parking map can be found HERE! Please don't hesitate to reach out to me directly (smoneer@melanoma.org) if you have any questions about this event, or any others. Happy Holidays to you and yours!

Sincerely,

Shelby - MRF

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StephyD83's picture
Replies 13
Last reply 12/30/2014 - 2:54pm

Hi All-
I just received my Re-read of my Pet/CT Scan from UCSF and they found a 3mm non - calcified nodule in my right upper love of my lung. Anyone have this and it turns out to be nothing?
Thanks!
Stephanie

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