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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The Gambler's picture
Replies 7
Last reply 1/6/2011 - 12:15am

The subject is not my wife .....Mine is the lovingwife Deb not to be confused.She is my life Piolot weather on the back of our bike on an adventure or next to me with support and all the love she can give and give.

Well I thought I was done with Mel as of last July giving up my lymph Nodes and we were looking forward to December  fresh exam and PET Scan with a new good outlook for the new year. Well then came the phone call from the Onc and results........it's back more melanoma and another tumor.Altho the lymph nodes,lungs,liver and assorted vital organs all not showing currently  (good for us )...but  it has found it's way to my brain it is a tumor the size of a golf ball  ( I could have been more satisfied with a big toe instead ).Well the next 4 days were full of all the worst possible Ideas of what was coming up next.Today was the meeting with the neurosurgeon for Deb and i learn our fate.Our warrier Bill58 has been fresh in our memory so we hold on for some promise.The surgeon was went through every item of every detail  to the point Deb and i could feel confident ( how do you go from terrified with brain surgery to be OK with it ? ).Well it is going to be surgery and not radiation unless he is forced he favors surgery to be least amount of potential other complications.I asked the question of how long did it take to grow in the brain and his estimate was about 6 weeks,he told me as fast as Mel spreads and grows I do not have the luxury of time the longer it growd the more damage happends i am already notice issues in speech.

.I still feel one of the best things i can do as take in all the best nutritional foods and a couple vitamins to support my immune system as best you can....OH yea and to make sure my wife knows daily I love her.

Well off we go to kill some Mel ass,,,wish us the best..

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Anonymous's picture
Replies 4
Last reply 1/5/2011 - 11:34pm

I'm posting for a family member that is Stage III and soon will undergo ELND (after the sentinel showed a microscopic amount in one).  Hopefully the ELND will not show any more spread but if it does, I wanna help her make sure she is getting the best treatment she can. It doesn't look like NV has a NCI center. If it did, maybe that would be a good place to go. How does she make sure her onc is going to fight her life in every possible way? How do we make sure he's aware/active/literate of the phast III trials going on and will refer her if appropriate? 

Immediately is there anything she should ask the onc-surgeon regarding the ELND. Are multiple ways this can be done, are there speical scans that can be done during the surgery to make sure they are taking what they need. It seems like I read it really does matter how good the onc surgeon is performing the ELND. How can she make sure she's in good hands?

 

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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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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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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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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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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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LynnLuc's picture
Replies 4
Last reply 1/4/2011 - 9:37pm

Just bummed and walking back in my mind again...

In 1992 0r 1993 ( I forget!)  I had that spot on my neck that looked like a flat brown long freckle about 1 in long. The Army doc's sent it off to Walter Reed ( my ex was stationed in Stuttgart) and the report came back as Lentigo maligna and that that it was not likely to spread to other parts of my body although it was still melanoma... told me not to worry...

Then in 2000it came back in the same place as the purple round spot raised up like an eraser on a pencil.

Gross Description:

 Diagnosis: Malignant Melanoma. Clark's Level 3. Tumor Thickness 1.45mm. The Margins of Excision appear uninvolved. Consider re-excision.

 Microscopic Description:

Within the dermis is a tumor composed of sheets of mildly atypical melanocytes some of which are pigmented. The pattern is consistent with malignant melanoma and involves a widened papillary dermis. Unequivocal invasion into the reticular dermis is identified. There are a few atypical melanocytes within the epidermis although pagetoid spread is not a prominent component. Tumor thickness is measured 1.45 mm. The margins of excision appear uninvolved. A re-excision  is a consideration. Correlate clinically.

--------------------------------------------------

SO..I went back and had it re-excised...and  5 sental lymph nodes removed from my neck...all were clear. Nothing was recommended as follow up.

-----------------------------

In May and early June 2009 I was having trouble breathing and a few other issues I found out something was growing close to my superior vena cava and if they didn't stop it -it would cut off all blood to the top half of my body and I would die... when they used a Storz video mediastinoscope at Mayo Clinic and the surgeon found a very enlarged black right paratracheal lymph node they cold only get a few bits of tissue for biopsy purposes but they couldn't remove it...it wasmetastatic malignant melanoma. They recommended radiation and Temodar and told me I would be dead in 6-9 months..it was devastating... The surgeon said he would not consider surgery to remove it because of the dangerous location of it...he said it would need to get down to the size of a bb before he would consider surgery.

The chemo and radiation had was keeping the "thing" inactive...

In Feb 2010 while getting ready for a trial in Seattle I had a PET and my SUV jumped...my local North Dakota onc didn't want to anything until it got "bad"...and decided it was time to go back to Mayo for another opinion again...this time I asked about surgery and they set up a consult...since I had no spread and it had just begun to show activity after several months- the surgeon agreed to do a thoracotomy..my Mayo onc was under the impression it was 4- 4.5 cent melanoma  in a single lymph node...the surgeon did say he saw a little spot from the initial tests a year before that had no changed in size or shape...but wanted to remove it by wedge resection as well...March 26, 2010-It was a rough surgery and he took out 3 lymph nodes...the middle one held the melanoma and it was actually 6.8 cent. A lot of the melanoma was necrotized and that is why it didn't show up on the PET. The tiny spot he removed  by wedge resection was just a lymph node and not melanoma..

Now I in the second 12 week cycle of my vaccine trial at Moffitt and I am still NED...I hope it never comes back...

I am feeling very blessed and I am also feeling very guilty...I want to know why I am doing well and some of my friends aren't...did my original diagnosis of Lentigo maligna play a role in it? I want to know why I am different...any idea's...Hey Jimmy....you out there?? I have 3 friends not doing so hot right now and I am bummed out. 

 

 

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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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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Linda J's picture
Replies 1
Last reply 1/4/2011 - 8:35pm
Replies by: emilypen

I hope everything went well today.
I'm going tomorrow to sign consent forms to start the trial. How long did it take for the trial to start from the time you signed the forms? I feel new nodes pop up everyday and I feel like the treatment can't start soon enough.

I am hoping that you got good news this week and I'm hoping for miracle results for me too.
All the best,
Linda (I'm from Barrie)

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killmel's picture
Replies 1
Last reply 1/4/2011 - 8:08pm
Replies by: Linda J

Hi Linda,

 

I read in a post that you going tomorrow to sign consent forms to start the trial. What trial are you doing? I read that you were interested in the BRAF/MEK combo trialis is that the trial you are doing??

I would like to get info on this BRAF/MEK combo trial. I have been looking for info on this trial. Would you know the clinical trial.gov NCT clinical trial number.

Linda, I wish you lots of success with your new trial. If you have any info on the Braf/MEK combo trial (like criteria requirements and exclusions) , I would sincerely appreciate you shaing the info. Perhaps the doctor/study nurse at PMHH might be able to tell you. Thanks

Stay Well,

Wendy

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MarioR1's picture
Replies 4
Last reply 1/4/2011 - 8:01pm

Does anyone know if they still make the black "Fight The Beast" bracelets. Mine of 6 yrs finally broke.

Thanks, mario

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mike_nj's picture
Replies 10
Last reply 1/4/2011 - 10:41am

Hello all

I have been checking the board frequently but rarely see anyone around to chat with lately.

Anyway, I hope that this year is the year that the researchers connect all the dots and we can start talking about either curing melanoma or downgrading it to a chronic disease, but no longer life threatening for most people.

I still work and I am involved in building a cat litter plant so my 3 cats should be happy.  My family, threw me a surprise 60 b-day party back in November.

I am due for another checkup in May as I am now 6 plus years out from my stage 3B diagnosis.  Still have Lymphedema in my right arm and some external radiation scars but in pretty good shape, other than my knees (arthritis).  I still take an assortment of supplements as well

If I had to get this cancer, I am honored to among all of you, those we lost and mourn , those fighting with active disease, those like me in a holding state, the newly daignosed, and all the caregivers and doctors and nurses that are on our side.

Happy New Year

 

Mike from NJ

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Would you mind emailing me at lisarath@gmail.com?

Thanks

Lisa - Aust

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lovingwifedeb's picture
Replies 15
Last reply 1/3/2011 - 10:06pm

I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

Father's Day - Stage 3B

July 22nd - Surgery

Choice - No treatment/Nutrition Based

5 Months - Happy New Years - New Tests - Stage 4 - Brain Cancer

No other "hot spots" in body found

 

My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis... now what?

Appointment with the neurologist on Monday.

Absolutely Terrified.

 

Deb

lovingwife to Bob, stage 4

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