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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So... hello to everyone!  I haven't posted in quite awhile, haven't even been around since they changed the format.  Hope everyone is doing as well as can be expected.  Heres the thing...just went to get my eyes examined.  Did the dilation thing and my eye doc found a very small choroidal nevus in my left eye.  To any who don't know me, I had desmoplastic mm on my left cheek about 5 years ago...2.8 breslow, clark IV, stage II - nodes all clear.  We took a pic of nevus for baseline and will follow up in a year.  I am concerned that it is very near the optic nerve (they showed me the pic - very cool!)  Trying not to freak out too much, I know it was small and not all choroidal nevus become melanoma.  Has anyone had this?   And, if so, how long were you followed?  Tell me some good news!

Cheers,

Chris

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naty's picture
Replies 10
Last reply 1/7/2011 - 2:36am

Well thanks to this Board Dad and I went to MDA in November.  What a great experience there!!!!     He was diagnosed February of 2005 stage III (?c).   Diagnosed stage IV October 6th to brain, ling, liver, and spleen.  The month of november he drove himself (against my better judgement) to WBR daily for 13 days.  Temedor was started early november.  

But just 2 weeks ago my father declined and I had Hospice start this past Sunday evening.  Tuesday he turned for the worse and lost the battle early Wednesday morning.  He fought to bitterly to the end even wanting to start his next round of Temodor last saturday.

Thank you all for your support.  And to those fighting Melanoma, may you win the battle and melanoma get sucked down the drain!  I am going to make it my mission to educate regarding melanoma and sunscreen use.  I am rambling but I need to do this ramble as no one else seems to understand.  I hate seeing people fry themselves in the sun-let alone their kids.  

anyways to all the fighters here and their family members keep going and fighting!!

Melissa

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Anonymous's picture
Anonymous
Replies 14
Last reply 10/13/2011 - 12:47pm

My adult ( now 28yrs old) son was diagnosed with nodular mel. 6yrs ago this month.  He was stage 3.   After  2 yrs of treatments  (surgeries ,gmcfs, radiation, & interferon) he has remained NED for 5 yrs.   Yesterday he had his annual scans and everything was great!!!!   Then his Dr. oncologist, told them, since he has been "cancer free" for 5 yrs, annual scans are no longer neccesary.   My son did opt to do scans for at least 2 more yrs.  Dr also said, "the return of his type of "cancer"  very rarely returns after 5 yrs".  I was talking to my son's wife last evening, about  what the Dr. findings, and what he told them about the chances of no return, after 5 yrs.  I told her that was not true.  She got upset with me and told me, " he is a Dr. and he knows these things".  I am scared they will get less vigilent.   I was the one who was my son's caregiver when he was diagnosed, & while he did 2 yrs of treatment.   I was the one doing the research while he was fighting his battle, and trying to carry on with his life, and build a career.  Which he did even while going thru treatments!  He has an amazing story!   After my son got married, I handed over his recoreds to them.  I explained as much as I could, and the fact that this cancer is more then likely never gone.  This is a life long battle!   I know my son did know about the seriousness of this cancer.   He had always read his records.   How do I go about  telling them his Dr was so terribly wrong, without upsetting them more?   I can't believe my son excepted this!   I would like at some time to appoarch the subject of him going back to MD Anderson, for his yearly scans.  Yet, don't want to upset them more.    I do not know this Dr.   This is one he got after his original oncologist retired.   I sometimes think they both now live in denial, and this Dr. just reinforced their denial.  

     Another question, the scans showed he has a kidney stone.  How do they know it is a stone and not cancer in his kidney?  My son opted not to see a urologist, since the stone doesn't bother him.   Silly man!!!!   When this stone decides to bother him....... he WILL know he is bothered!!!    

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budspal's picture
Replies 6
Last reply 1/7/2011 - 3:15pm

recently diagnosed stage 4 and looking for feedback re side effects from the ipi ....any info greatly appreciated. 

 

 

 

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Amy Busby's picture
Replies 13
Last reply 1/10/2011 - 6:40pm

I've always had a bunch of subq mets, most in the visceral tissues but some you could feel under the surface.  Now I've had a few come up with bruises on the skin above them.  Wow!  Did the appear so fast they "punched" a bruise on my skin?

Weird.

Sure tumors are progressing based on the pain level progression and the new ones I can feel here and there.  Scans tomorrow and meet with ipi onc in San Antonio on the 14th.

Update to follow!  Sorry I have not been around much.  Fatigue is high.  Too much activity each day to fit into my very limited energy reserve.

But I think of you all and pray regularly.

If there are any viable last line options out there, give me a head's up.  I know my LMD makes everything a fight and I don't know how big the guns I'd be able to bring are.

love,

Amy

 

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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carol b's picture
Replies 5
Last reply 1/6/2011 - 7:51pm

well my oncologist doesnt believe that interleukin-2 will do me any good. He worked his magic and got me into a clinical trial in Vanderbilt. I have an appointment next Wed. on the 12th..Im not sure if its a meet and greet kinda day or if they will keep me an get me prepared for some kind of treatment. Its the not knowing that is driving me so crazy. I dont even know what kind of trial it is but my onc in Memphis says it is having a 45 % success rate. He said if he was in my shoes thats where he would go. But the pain is getting very intense. I finally got Hydrocodone 10/500 . gabapentin 300 mg and clonazepam 0.5 mg.. It helps a little. I just pray the pain doesnt multiply as fast from now till next week as it did from last week till now.. Vanderbilt is suppose to be calling with details before the end of the week. i hate the waiting. the drugs make me woozie so if this post sounds crazy thats why. i will repost when i find out what kind of trial i will have. thanks to everyone on this board who has posted their story. Some r so encouraging. life feels a little bleak for now but maybe Vanderbilt will be my miracle cure.. hugs to all

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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brettlamb320's picture
Replies 2
Last reply 1/5/2011 - 5:17pm
Replies by: LynnLuc, lhaley

I am stage IIIC diagnosed 6/09.  original site was a mole on my forehead right at my hairline.  SNB was positive, had a radical left side neck discectomy where they found one positive node.  I was accepted into the phase III ippy trial in 10/09.  Everything has progressed nicely until my appointment/treatment yesterday.  I had my usual 3 month scans and a spot has showed up in my left lung.  Retrospectively you could see something starting to grow in my scan 3 months ago.  It looks like I am going back under the knife here shortly.  I am meeting with a cardiothoracic surgeon next week in Charlotte.  I think they can do a VATS procedure and get it.  Not sure yet what the medical side of this one will be... The surgery always seems to be the easier choice than the treatment.  Anyone had any experience with anything related?  How about a great thoracic surgeon?  I am anxious they may tell me i have to do intf this time.  If not, I would suspect they will dose out chemo or radiation.  jeezz.. its amazing what you can get used to. 

Brett

 

 

 

Regret is a waste time.

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dian in spokane's picture
Replies 10
Last reply 1/7/2011 - 9:50am

I'm sad to report that Sandy from Buffalo passed away yesterday at 9 am. She was moved into Hospice last weekend. She was known here on the new board as Sandra Dee, since, for some reason, she was unable to register as Sandy from Buffalo.

She's fought a long hard battle with melanoma, and was well known here at the MPIP for her many contributions for a long time, so I thought it should be posted here. I'll pass along a link to her obituary when I receive it.

Dian in spokane

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PeterO's picture
Replies 1
Last reply 1/5/2011 - 11:28pm
Replies by: Jim in Denver

Watching what's happening with the Avastin controversy in breast cancer makes me wonder what the prospects are that FDA will ultimately decline to approve Yervoy (as I guess ipi is being called now) for advanced melanoma. What's the speculation? The astronomical prices for cancer drugs is bound for a head-on collision with Obamacare.

www.theogler.blogspot.com

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Watching what's happening with the Avastin controversy in breast cancer makes me wonder what the prospects are that FDA will ultimately decline to approve Yervoy (as I guess ipi is being called now) for advanced melanoma. What's the speculation? The astronomical prices for cancer drugs is bound for a head-on collision with Obamacare.

www.theogler.blogspot.com

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KellieSue's picture
Replies 5
Last reply 1/7/2011 - 11:42pm

Well, I've decided to start IL-2 at U of Iowa on Tuesday(the 11th.)

On a better note I'm headed to Vegas this weekend with the girls. Short notice, expensive tickets but who cares right?

Kellie(from Iowa) Stage IV, hopefully NED after IL-2

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Replies by: Sherron, Lori C, JuleFL

I am trying to sort through my own feelings and emotions of the past two years - being a caregiver for Will, the whole nutty clinical trial process, doctors who should know what they are talking about but didn't - all of it.  I'm also trying to write about it, hoping that my experiences might be interesting and even useful to others. 

If anyone would like to dialogue with me about these things, please email me!  Brennan07at aol.com     I am still grieving in a way that I cannot quite understand - I thought I was well aquainted with grief but found out this was a very different experience than any other I've ever had.    I have tremendous guilt, anger, and just sadness. 

I know many people have had wonderful hospice experiences.  Unfortunately, I did not.  The hospital we took Will to was entirely unused to dealing with people undergoing advanced cancer treatment (it was a local community hospital, same hospital Bill went to two weeks ago) and pushed a DNR and hospice from the moment we arrived.  The hospice team insisted on pushing their views at every turn, and I had to fight extremely hard to get Will treatment while waiting for actual information and facts (from his oncology team at Rush and from test results).  They did not want to do any acftive treatment; so sure they were that it was futile.  I kept wanting facts, they kept treating me like I was insane.  "He's very sick", they kept telling me.  I wanted to scream, "Yes, not having recently arrived on this planet, I'm aware of that!  I've been taking care of him for a year and a half!"  In the aftermath, they (the hospice people) kept sending me "How to get through your first Christmas without your Loved One" booklets and such (I'm Jewish) and warning me against "feelings of anger". 

Well, I have a lot of anger - towards a system that forces patients to sift through insane amounts of highly techinical information at the most difficult time of their life to unearth appropriate clinical trials, towards pharmaceutical companies that are motivated by profit solely, towards Md/Ph.Ds who should , but do not, have any idea what they are talking about at critical junctures when lives depend on them - and that's not even touching on insurance companies.  I was also completely unprepared for the emotions I would experience as a caregive; how focused I became on Will to the degree that I really felt we were one person - and then when I lost him, felt absolutely ripped in half. 

Anyway,, I would really like to talk (I do best via email but can do phone) with others on some or any of these subjects! 

Lori

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Replies by: Janner, lhaley

Hi all,

I am just looking for some thoughts about an issue that has just come up today for me.  I was diagnosed with melanoma recently (0.82, Clarkes IV, mitotic rate<1, no ulceration, no regression, brisk lymphocytes) on my lower foot not that far from my toes and had a WLE with skin graft and SLNB which came back clear thank goodness.  I have been sitting still for almost three weeks now which has been very hard on me and my family as I have a two and a half year old and a 3 month old baby.  The graft still hasn't healed all that well.

Today in a clinic appointment with a resident/registrar (the surgeon is on holiday still) I realised that the circular dent in my foot is actually not around where the mole was, but around half a cm out and up toward my thigh, rather than down toward my toes.  This means that rather than a 1cm margin from the edge of the melanoma it is more like 0.5cm as far as I can tell.  This seems to have come about because of the way the dermatologist had left the scar.  She did take a photo but I am not sure if it will show where it is located on the foot or if it is just of the melanoma itself.  The margins on the tumour were clear with the initial biopsy and there was nothing further in the WLE tissue on microscopy/staining. 

I can not quite believe this is happening and I have only just realised this.  I am also very concerned that it looks like the depth of the excision only goes down to the fat layer rather than fascia (the district nurses dressing my foot daily also think this).  Obviously this will all need to be discussed with the surgeon when he comes back but I am anxious to try and figure out what to do as I need to get it done asap if I need to go back to theatre.

Any comments would be really welcomed, I am finding this whole thing unbelievably difficult to digest and what this means for me and my family.

Thank you.

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Solodad's picture
Replies 14
Last reply 7/18/2011 - 6:57am

 

Hello,

I posted this on Cancer Compass, then found this board. Seems like maybe a melanoma-specific board might be worth a try. Anyway, here's my story.

In July of 2010, the removal of a mole on my left bicep led to a stage IIIa diagnosis (one lymph node with 1mm focus of cancer cells). Had the SNB, then a full axillary node removal from left armpit (no positive nodes there). I did not do the Interferon for reasons I won't go into here, but radically changed my diet and added various supplements which supposedly are beneficial. (AHCC, Astragalus, AveUltra, Vitamin D, Modified  Citrus Pectin, Boswellin, Bromelain, Beta Glucans, Reishi and Maitake capsules, Melatonin, Flax oil and flax seed, juicing (vegetable and fruit), broccoli sprouts, organic produce, no meat, no cheese, no processed food, no soda, no sugar, no alcohol, etc. etc. etc.) 

The thing is, I can't think of anything else but melanoma for more than a few minutes at a time. I feel constantly worried and on the verge of bursting out in tears. I'm constantly researching one thing or another about melanoma online and it pretty much always turns out to be more bad news. Every little twinge or ache in my body makes me worry. I keep having regrets about not doing the Interferon treatment, and wonder if there is anything else I could be doing. The clinicaltrials.gov website always turns out to be a total waste of time, since there's either nothing for which I qualify (a good thing, I suppose), or it's so far away and so complicated that it won't work for me, or there's no guarantee I'd even get what they're testing. Worst of all is the thought of not being around for my young son, who doesn't even know what's going on with me yet.

I guess I'm just looking for some feedback, some advice or support, or some... well, I don't know. I don't have anyone with me or near me to give me a pep talk or clue me in on things I should be aware of. I thought maybe just hearing from others might help  somehow. How do you "disconnect" your mind from melanoma? How do you turn off the worry?

- solodad

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Replies by: LynnLuc

https://www1.gotomeeting.com/register/326516224

Do You Have Questions that You Would Like Answered during the Vaccines & Melanoma Therpay Webinar

 

Join us on Monday, January 10th at 7:00pm (EST) for an overview and up-to-date spotlight on vaccines & melanoma therapy. Presented by MIF Scientific Advisory Board Member,  Dr. Jedd Wolchok, MD,  PhD, Director, Immunotherapy Clinical Trials at Memorial Sloan-Kettering Cancer Center. Be sure to register today!

 

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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