MPIP: Melanoma Patients Information Page

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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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NicOz's picture
Replies 3
Last reply 10/4/2010 - 8:30pm
Replies by: glewis923, washoegal, Anonymous

I fail to see how choosing to post anonymously is not being respectful. If someone chooses to maintain their privacy by not using a recognisable moniker, then they are perfectly within their rights to do so, surely?

I don’t post anonymously here, but I also don’t ask many questions these days, nor do I have much to “offer”. Not everyone who visits this forum has travelled the more ‘typical’ route of melanoma progression or treatment. And with the amount of people concerned about “upsetting the natives” and “scaring people” with their stories, I actually feel that I have nothing to offer in most cases.

I used to post on here more frequently, but no longer feel part of the ‘community’ so these days it is fairly rare that I respond. I have nothing to offer with regard to chemo information that hasn’t already been covered in numerous posts. I have no advice to offer stage I, II OR III as I jumped straight to IV. I don’t even have much to offer stage IV as I only deal (at this stage) with brain mets using a mixture of surgery and SRS. Don’t ask me about liver, lungs, intestines, bones, subcutaneous mets... I have no idea or advice to offer. I will deal with them if and when I have to.

I don’t get on and talk too much about brain mets, other than to update any treatment I’ve had recently, and I’ve had that many surgeries that I’d just be repeating myself over and over (which would be a waste of time in my book) And frankly, sometimes I’m just too busy living as normal as possible life and spending time with my little girl.

Because I choose not to immerse in  and surround myself with melanoma does not mean that I have any less right to visit this site to lurk and see how friends are doing. If I choose to distance myself to stay away from here because I do not feel up to seeing one more ounce of bad news, that is my business. If I choose to push melanoma to the periphery of my life, then more power to me! I already have it in my body- I see no need to have it on my mind unless it is necessary.

I have divulged all of the personal information I intend to, and have no wish to go over it ad nauseum. There are archives for that.

I am at a different place to where I used to be, so this is what works for me. Times change. Circumstances change. Fear changes, and even abates. My needs are different. I have been around here for 2.5 years. Not everyone is at the same stage or in the same place, and I think people tend for forget that lately.

I don’t get my “hope” from anyone else, so I don’t come here looking for that. I do my own research on what interests me, and I’m qualified enough to do that considering I was clinical trial researcher prior to melanoma. I’m in a different country to most on here, so I’m not going to be any help with doctor recommendations, available trials,  disability/insurance/financial issues.

I don’t reach for NED. To me, it’s just another acronym. I’ve never been NED and that doesn’t actually bother me because, for now, I’m still living independently, still caring for my 5yo daughter, still doing the school run and still taking my girl on bone-jarring rides at the local show (fair, I think most call it) From November to June just past, I had 3 craniotomies (one of those was a double) and an SRS treatment, and there was not a month when I didn’t have to travel for medical appointments. For the moment, I’ve had 3.5 months at home, and I’ve been loving it.

Yes, I still have 5 tumours in my brain, but meh. When I get to the point where I need to have something done about them, I will (and no, they aren’t measured in mm’s IFKWIM) For the moment, we’re chugging along nicely.

My point? Not sure. Just letting people know that there are real people who visit this forum, and their reasons for not being active are likely many and varied. It is up to no one else to judge them for it. People have the right to be active, or not. To be anonymous, or not. Everyone has their own reason for being here, and it is no less valid because it doesn’t mesh with how someone else thinks it should be.

Rant over.

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Lori C's picture
Replies 12
Last reply 10/6/2010 - 8:36pm

On Wednesday night, Will stopped vomiting from the chemo and by Thursday morning felt better, except his voice was a little raspy.  By Thursday  night he was coughing and wheezing and I called an ambulance because he seemed short of breath.  They took him to a local community hospital.  He has pneumonia.  It's being treated and he is stable and improving, however, the experience was really awful.  The doctors at the community hospital were absolutely clueless about stage IV melanoma treatments and their side effects.  They told me he would die Friday night, they told me there was probably no point in treating this, melanoma was untreatable anyway, etc.  When I said "He's been responding well to the chemo", the doctor snapped, "What does THAT mean?"  I hauled out his latest CT scan ("reduction in tumors" , etc.) and the guy ignored it and sent hospice people in to me who told me, "Melanoma is a horrible cancer and there is no treatment that works."    I kept explaining that as long as he was responding to the treatment he had a chance at prolonging survival and opportunity for more targeted treatments, but was treated as though I was waving entrails and bones and claiming the fairies would heal him. 

I had his oncologist staff from Rush call the hospital and talk to them and things have improved since then.  He was moved out of ICU within 48 hours, he's getting breathing treatments and his appetite has improved.  His oncological nurse said that while his next chemo dose may be altered by this, this was NOT unexpected at 8-10 days post chemo when his immune system is so low..  What an experience, though.   I am anxious to get him back home and to his proper doctors. 

If I'd had any warning, I would have definitely just gotten him to Rush asap.  But this came on so fast that I didn't - and with breathing trouble, I was too fearful to drive him myself.   With his oncology staff insisting to the community hospital staff that this is "an acute crisis that is treatable", things have turned around but this was a big eye opener.  Stay away from medical staff who don't understand melanoma!

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Wendi Lynn's picture
Replies 2
Last reply 10/3/2010 - 10:55am
Replies by: DebbieH, Fen

Hi Everyone!

You are always so helpful, so here I am seeking help again.  I had a modified left neck dissection on 9/22 after a lymph node biopsy proved positive for melanoma.  Results are only the one lymph node was positive out of the 32 tested, so I'm very happy about that.  And I had a PET scan on 9/13 that was questionable on 3 lymph nodes in my arm pit.  My surgeon spoke with the PET doc (can't remember exactly the title of the nuclear doc) who said that the 3 in my arm could have been just enflamed.  With all that said, my oncologist said that if the lymph nodes were involved that we would need to do the interferon high dose and 11 month follow through.  I haven't seen my oncologist since before the lymph node biopsy (I have an appointment with him on 10/19). 

So, for those of you who have, sadly, too much experience with this, I'm looking for your opinions on treatment and timing of such. 

Thank you in advance for your words of wisdom! 

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Replies by: Jim M.

Hello Everyone, I have questions about if there are any other Choroidal Melanoma Liver metastasis patients on the site.

My husband was diagnosed in May 2010 with the liver mets and we have completed 2 rounds of chemo-embolization with ironotecan beads.

We are waiting on our CT scan results due Monday but meanwhile we ended up in the E.R. with edema throughout feet, ankles, legs, glutes.

We are told my husbands albumin levels are very low and that is causing the ascites and edema. We are told this is not a good sign.

Does anyone know of any natural treatments to help with this? We have had some success with elevation of the legs and lymphatic drainage.

We are scared and would really like to hear of any other survivors out there and how you are doing it.

Thank You

Suzie and Jerry     

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Bugandi's picture
Replies 3
Last reply 10/4/2010 - 12:16am
Replies by: Cynthia C, Bugandi, paul

Hi,

I had a recent PET scan that showed an 8 mm spot or uptake in my left lung, and am quite frankly, scared!!!!!.. I have had a couple of surgeries, but have been told that chest surgery is no walk in the park.  My oncologist discussed radiation as an option, anyone ever had radiation to the lung?s?  I go back in 2 weeks for a high resolution CT scan and then will have to make deisions as to how we are going to attack this.  I don't know what to expect, so any feedback would be appreciated.

Thanks

Bryan

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Bruce in NH's picture
Replies 8
Last reply 10/6/2010 - 2:15pm

Today is really a wonderful day. It seems like only yesterday that I was awaken by my wife at 4AM while on a business trip to Singapore, telling me that the mole I had removed prior to leaving was melanoma. Singapore is 12 hours time difference from my home in New England. I never felt so alone. But now I can celebrate 10 years of living beyond that day, thanks to God, wonderful physicians and medicines and great family and friends. I thought it important to share this milestone with those of you on the board who have recently been diagnosed with melanoma. There is a lot of support for you here, and we will try our best to see that you survive this disease as many of us have over the years. Take care, fight hard and have a wonderful weekend!

Bruce in NH

Stage IV since December, 2008

www.survivingmelanoma.com

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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tonyrussell's picture
Replies 33
Last reply 2/13/2012 - 10:04pm

Hi,

My wife just got diagnosed with Melanoma today.  Although the doc said he got it all out...i'm terrified.  We do have to go to a specialist to make sure it isn't in the lymph nodes but the prognosis is good.  However, I could use some positive input and stories.

Tony

tonyrussell2@gmail.com

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SandraDee's picture
Replies 23
Last reply 10/5/2010 - 10:14pm

Hi all:  This is Sandy - Buffalo.  I only changed my name b/c when the forum here changed, I was having trouble getting on so had to create a new user name. 

Anyways, my "free ride" pass seems to have expired.  The clinical trial (IMC1121B) that I started almost 2 years ago and that was keeping me stable has gone south!  So has my melanoma.  So, in addition to 1 worrisome tumor in the bottom of my right lung, as well as other, smaller tumors bilaterally, I am now dealing with a. 5cm x 6xm (gosh, it's so hard seeing those large #'s) "mass" in my small intestine.  It is causing me a lot of abdominal/back pain, as well as fever and anemia.  Hemoglobin this week was a mere 6.8, so I have had 2 units of blood infused this week alone.  Also got 2 earlier in the month, so apparently there is some type of internal bleeding going on, and the docs have yet to pinpoint the location.  Has anybody heard of mel sypmtoms (fever, body aches) responding to antibiotic?   The confusing part is that my WBC is skyrocketed (more than doubled in 2 weeks, and was high to begin with), as my RBC continues to decline.  However, on antibiotics, fever goes away and WBC comes down a bit.  So, my doc seems perplexed as am I...do I have an infection on top of the new mel findings???  Sorry, I'm getting winded here.

I'm currently being treated at Roswell Park in Buffalo, and they are suggesting possible small intestine surgery (capsule endocscopy scheduled next week to determine location of bleed), followed by Temodar, hopefully followed by ipi.  IPI of course is very questionable due to entering that treatment with a compomised small intestine. I am going to Pitts to consult with Dr. Kirkwood on Monday and hope to get a few more options/clinical trials. I am also in the midst of BRAF testing.   Bottom line, I need to start on something fast!

Sorry I've been away so long, dear friends.  I am not one for change, and it took a lot for me to even figure out how to log on since the changes.  And, enough about me....blessings go out to Jerry, Kurt, Sharyn, JAG, (whose posts I've followed for 2 years now), King, Sue Kyser,  Charlie, Terra, James from Sydney and all of my other long lost friends.  Even though I haven't posted in months, I still check in on so many of you!

Hugs,

Sandy - Buffalo

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Julie in SoCal's picture
Replies 3
Last reply 10/2/2010 - 11:56am

Hi there Friends!

Just wanted to post and say that I just had scans again and all came back clear!  I'm 2 years past dx, one years past tx.  Life is good!

Doin' the happy dance!

Julie

3a

SNB, LND, HD-INF, GM-CSF 11mo, NED 2 years

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

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Joan C's picture
Replies 3
Last reply 10/2/2010 - 12:36pm

He was a big producer of shows like The A Team and The Rockford files.http://abcnews.go.com/Entertainment/wireStory?id=11777002

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skysar's picture
Replies 3
Last reply 10/2/2010 - 8:16pm
Replies by: Jim M., Jim in Denver, jag

I posted last week regarding the rash I developed either from IPI or antibiotics.  The 2nd treatment was scheduled for 9/29.  Doc decided not to give me IPI due to the rash but did give me the Temador.  My platelets are dropping so I have to have blood checked twice next week and we will go from there.  Rash is getting somewhat better so that is a relief.  Not feeling so hot today after taking two nights of the Temador.  I am on a total of 350mg.   Next treatment scheduled for 10/20 with tests this time.

Sue

Hotlanta

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bluepeople's picture
Replies 14
Last reply 10/6/2010 - 2:43pm

So my hubby was diagnosed with stage 2b, 2c melanoma.  He had 2 spots removed, checked both sentinal nodes which were clear.  Still a little worried since one spot was pretty deep.  PETscan next week, crossing our fingers that it hasn't spread anywhere.  He is supposed to start high dose interferon in November, then the 11 months of maintenance low dose.  From those of you who have done this, and are stage 2, what was your experience?  I keep hearing that it is a year of hell, and that lots of people don't last the whole year for various reasons.  It seems that this is a proactive way to battle the cancer I guess.  I'm pretty freaked out since my dad died from melanoma in 2000 (although he didn't catch it till it was pretty advanced).  Are there other options?  Thanks for any input.

Akilyn

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Jaime.30's picture
Replies 8
Last reply 10/1/2010 - 4:56pm

Hello my name is Jaime and my husband is a melanoma warrior.  He was diagnosed April of 2009 with Stage III A Melanoma, which started as a flesh colored lump on his right ear.  He had part of his ear removed and had a radical neck dissection to remove 25 lymph nodes...one of which was positive.  He went on to do Interferon for 10 of the 12 months when something showed up on a brain MRI and our doctors said Melanoma 90% sure....discontinue the Interferon and see a Neurosurgeon.  CT scans and a stealth MRI were done and there appeared to be 2 or 3 small lesions on the brain just above the ear where the primary tumor was.  Dr. says you are only 33, this is in a low risk area of the brain...we wanna go in and take it out...no watching it.  He had a craniotomy on September 2nd and the results were shocking.  They removed a ping pong sized area of what turned out to be inflammation.  No Melanoma cells were found.  We are very happy about this of course but we do not know what is causing this and it is know to be associated with tumors.  The plan now is to wait keep rescanning the brain and hoping that nothing comes back.  The MRI right after surgery was totally clear.  After a couple weeks of using a walker then a cane my husband is doing well. He is not the same on the left side...weaker and a bit unsteady at times but doing so well. A friend of mine that I met on a Facebook Melanoma group suggested I look here for maybe someone who has had a similar situation.  Thank you for reading.  God Bless.

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Replies by: KatyWI

hello all,

I have basically only been reading the board ever since it switched styles.  So I am glad to be back on.

Finally I can say..I see so many have been suffering this summer and in my heart I suffer with you.

and it is painful every time a warrior gets their wings...

wearing yellow, living strong on October 2nd for cancer survivors worldwide and praying for strength and peace for all mm warriors out there....

I am hanging in and still stable 21 mos.

Diana W  3c

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-The melanoma fist was found when she was 25 and they cut it out of her lower leg.
-Now at age 55, it moved into to her limp nodes on the same leg.
-They surgically removed the limp nodes and she had a major infection to deal with for several weeks.
-After more biopsies and appointments they found that the cancer had moved in the form of a tumor wrap around her main artery in her leg.
-They gave her 6 months to live and told her there is nothing else they can do.
-I have heard of people getting through these things or at least having hope and living a longer healthier life then they would have if they had given up.  
-My main concern is finding somewhere that treats mind body and soul.  She needs to have someone to talk to who is positive and makes her feel better, and this has not happened.

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