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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kpcollins31's picture
Replies 6
Last reply 12/26/2013 - 6:19pm

Just found out the results of my scans earlier in the week. Brain MRI was clear which was great. However, CT of Abdomen came back with the following: "1. Thickening of the small bowel wall in the left lower quadrant with suspected small bowel mass, raising the concern for metastatic disease. PET/CT is suggested for further evaluation. 2. Subcentimeter hypodensities in the liver are too small to accurately characterize."

I have not talked to my oncologist since the scans and actually found these results posted online. My appointment with him is not until the end of January... guessing that might get moved up. I know the above does not confirm stage 4 but it seems pretty likely. At least there are some promising treatments out there now.

Kevin

 

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mark1101's picture
Replies 4
Last reply 12/26/2013 - 3:21pm
Replies by: mark1101, awillett1991, POW

Got the results of my last PET scan.  They noted a small (less the 1 cm) shadow on my right posterior iliac and ordered a biopsy.  The biopsy confirmed a melona met on the bone.  My onc is suggesting we postpone treatment of this for a mont or so, take anothe scan see what changes occur.  If it is smaller or gone, do nothing.  Apparently Ipi is noted for having a delayed reaction effect on  mets sometimes.  If it is the same, go in surgically and kill it with a hot or cold needle at the surgeon's recommendation.  If it has enlarged or spread to other sites, then we are considering IL-2 HD.  I am considered of good general health and good likely tolerate this treatment with high probability of backing the melanoma off.

Anyone else experienced a similar set of choices...how did it go for you.  Also anyone familiar wtih IL-2 HD and its benefits relative to the side effects.  How did you have it administered?

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WendyD.'s picture
Replies 8
Last reply 12/26/2013 - 11:55am
Replies by: WendyD., Janner, POW

I had 3 more biopsies done this past Monday and I got my results today. One was just a regurlar mole, one look like just a wart, and another had abnormal cells. I asked if abnormal meant melanoma and she said that it didn't say melanoma, basal, or squamous, just said abnormal cells. So she said that the doctor was gonna keep an eye on it and in four weeks he was gonna freeze the rest out. Then as I was on the phone she scheduled me to come in for my wide local excision on Dec.26, which is 3 weeks since I got diagnosed with the melanoma. I'm suppose to pick up my path reports today for the recent biopsies. Ok with that said I have a couple of questions I'm hoping someone can answer for me. 1. What does abnormal cells mean and is that a threat for melanoma, or would the path report specifically say melanoma if that was what they suspected? 2. Are they waiting too long to do my WLE or did anyone else have to wait 3 weeks or longer to get it done? Thanks in advance to whoever answers my questions. :)

In God I Trustsmiley!

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tasjacques's picture
Replies 4
Last reply 12/26/2013 - 10:54am
Replies by: Anonymous, tasjacques, awillett1991

My husband, Jacques has been doing so well in PD 1, his response has been fantastic as we posted back in August at the 12 weeks mark, and then he has continue to response to it as the next scans showed still regression/shrinkage of the tumors on the lungs, liver and lymph nodes Great! 

BUT since the beginning of November he has been suffering this excruciating stomach pains, diagnosed as gastritis, no medication is really helping him with the pain. About a week and a half ago his blood pressure drop to low 70's over 50's and last Tuesday when we went to the doc his BP was 64/37. He is now in the hospital to bring the BP up, give him nutrients (at this point he was not eating much or not at all). He has had severe fatigue, pain all over, decrease appetite.

Today they will be testing for hypothyroidism to see if this is the culprit.

has anyone experience hypothyroidism? What were your symptoms, all the doctors that have seen him, don't have an answer really for us in what is causing all his symptoms.

I don't know how to feel, I am frustrated that we can't help him, that we can't find what's going on for him to have all these symptoms, specially the abdominal pain. 

He was doing so good, and BAM! has lost 20 lbs, extreme fatigue, sleeping all day, unable to walk for long...

thanks for reading. I keep praying but feel lost

Elenise

(Jacques profile is under tasjacques)

 

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Stage III/IV Melanoma Patients at Risk for New Primary

 

J. Clin. Oncol 2013 Dec 02;[EPub Ahead of Print], L Zimmer, LE Haydu, AM Menzies, RA Scolyer, RF Kefford, JF Thompson, D Schadendorf, GV Long

Research · December 24, 2013
 
 
 

TAKE-HOME MESSAGE

  • This long-term follow-up of > 4000 patients reported a 5.6% rate of second primary melanoma at 10 years in patients with stage III disease at initial diagnosis.
  • Risk of developing a second primary was higher in males and in those with history of multiple melanomas in the past.

- Richard Bambury, MD

 

ABSTRACT

 

PURPOSE

New primary melanomas (NPMs) have developed in some patients with metastatic melanoma treated with BRAF inhibitors. We sought to determine the background incidence of spontaneous NPMs after a diagnosis of American Joint Committee on Cancer/International Union Against Cancer stage III or IV melanoma in patients not treated with a BRAF inhibitor.

 

PATIENTS AND METHODS

Patients diagnosed with stage III or IV melanoma at Melanoma Institute Australia between 1983 and 2008 were analyzed, and those who received a BRAF inhibitor were excluded.

 

RESULTS

Two hundred twenty-nine (5%) of 4,215 patients with stage III melanoma and 43 (1%) of 3,563 patients with stage IV melanoma had at least one NPM after diagnosis of stage III or IV disease. The 6-month, 1-year, and 10-year cumulative incidence rates of developing an NPM after stage III melanoma were 1.2% (95% CI, 0.86% to 1.51%), 1.8% (95% CI, 1.44% to 2.26%), and 5.9% (95% CI, 5.08% to 6.74%), respectively. The 3-month, 6-month, and 1-year cumulative incidence rates of NPM after diagnosis of stage IV melanoma were 0.2% (95% CI, 0.07% to 0.36%), 0.3% (95% CI, 0.15% to 0.51%), and 0.4% (95% CI, 0.25% to 0.7%), respectively. In both patients with stage III and stage IV melanoma, male patients and patients with a prior history of multiple primaries had a higher incidence of NPM.

 

CONCLUSION

Patients with stage III and stage IV melanoma remain at risk for development of further primary melanomas, particularly if they have a history of multiple primary melanomas before stage III or IV disease. The incidence rates are lower than those reported in patients receiving BRAF inhibitors. However, the results must be compared with caution because dermatologic assessment is more frequent in BRAF inhibitor trials.

 

Journal of Clinical Oncology
Incidence of New Primary Melanomas After Diagnosis of Stage III and IV Melanoma
J. Clin. Oncol 2013 Dec 02;[EPub Ahead of Print], L Zimmer, LE Haydu, AM Menzies, RA Scolyer, RF Kefford, JF Thompson, D Schadendorf, GV Long

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 12/25/2013 - 6:23pm
Replies by: BrianP, NYKaren

Any idea when this may become a reality? 2014?!?

Thank you all and have a beautiful Christmas...

Sally

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JC's picture
Replies 0

I do think others have been through this.  As Janner says, if you scan you often will find many "benign beasties" in our bodies; liver hemangiomas, lung granulomas, etc...  once they go down that road and find anything they have to follow up, but it doesn't always mean malignancy.

 

Sorry I cannot respond to your post, I keep getting a "you're spam, you're blocked" message when I try to post for some reason.

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mitchwendy's picture
Replies 2
Last reply 12/23/2013 - 3:54pm
Replies by: mitchwendy, sbrooks90

I had my SNN on my left groin last Monday. However, yesterday and today the area to the outer side of my thigh really feels bruised. Almost from the left side of where the incision was but not exactly touching the incision, all the way to the outside of my thigh, does this make sense? Has anyone had a bruising sensation a week after a SNB?

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Anonymous's picture
Replies 4
Last reply 12/23/2013 - 1:36pm
Replies by: Golda_, Bubbles, Ioana, jmmm
My mum was diagnosed with melanoma on scalp, stage 4 in October 2011. A simple mole she had for years became black and ulcerated. IT was immediately removed, but without safety margins:(. After a single month, the cancer came back, with new primary and a few black dots near. She had another surgery in 2 months, carried out by another doctor, who was amazed to find that in this world in 2013, melanoma was removed initially without safety margins. She had it removed and a skin graft from her leg was put on her scalp. She received Interferon, for one year. Simultaneously she's been through chemo, DACARBAZINE only, because she is also diabetic. This year, almost one year after diagnosis she started to feel pain in her chest. She thought is just smth that will go away. A PET Scan carried out one month prior to her new chest pain revealed NOTHING. So she went to another clinic to find out she had lots of metastasis in her chest area :(.
She continued chemo, but with no results at all. For 3 months she mainly laid on bed, sometimes she cried being in pain.
I asked her to do the BRAF test, and she is positive.
Now I bought her Vemurafenib, which is soooo expensive. In only 4 days of treatment the lymph node near her ear decresead. She started to walk again, she started to cook, she takes short walks, she says the pain reduced (in only 10 days). SOmetimes I think: can that be possible? 
 
DOES ANYONE KNOW IF THERE IS A PLACE ON THIS EARTH WHERE I CAN GET THIS VEMURAFENIB(ZELBORAF) REDUCED OR FOR FREE?
ROCHE OFFFERS A DISCOUNT, BUT EVEN SO, IS STILL TO EXPENSIVE FOR ME :(

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joy_'s picture
Replies 3
Last reply 12/22/2013 - 8:02am
Replies by: BrianP, WendyD., Janet Lee

Hi everyone.  I have been an occasional poster and long time reader of this forum - since my husband's initial diagnosis nearly 6 years ago.  I know for me, it has always been encouraging to read the good news so today I would like to share some with you all.

I don't know if the patnet still works so here is a summation of my husband's journey.  He was diagnosed stage II in 2008.  All was fine and dandy until 2010 when mel reared its ugly head showing up in his lymph nodes which lead to a LND and horrible month of interferon.  Again, all fine and dandy until this past February when another enlarged node was found and scans revealed spots on lungs, liver, adrenal glands, etc.  BAM! - stage IV.  He is BRAF positive so decided to participate in a trial using Zelboraf for 6 weeks then Ipi then Zelboraf.

He did great on Z, and tolerated 3 doses of ipi at 10mg/kg when all of a sudden he had weakness and started losing mobility.  An MRI showed lepotmeningeal disease.  My husband was paralyzed from the waist down in the matter of a few days.  They thew the kitchen sink at him, radiation, Decadron, etc.  We all thought he was crashing.  In a few weeks he went from a wheelchair to a walker, and they put him back on Zelboraf. 

A neuro-onc said he might get 60% mobility back.  No one could believe how great he was doing.  They started questioning whether it was leptomeningeal disease or polyneuropathy from ipi.  He was walking again in to time though and even able to kick a leg over his motorcycle to ride that.  Still, no one can believe how well he is doing.  

So now for the really good news.  He has now been on Zelboraf for 6 months and had scans last week which showed NED!  In addition to that, his skin is showing depigmentation which indicates a late response to Ipi.  He is still very fatigued and has nausea & vomitting.  Life is still not loads of fun, but there is nothing like NED to brighten your holiday spirits!

This has been the most difficult year of our lives.  A roller coaster that so many of you are familiar with, but at the moment we are on the upswing and enjoying every minute we can!  

Press on, melanoma peeps.  I know the battle is tough, our family has weathered this storm and have the battle scars too.  I hope you are encouraged though to hear some good news.

Merry Christmas, Happy Holidays, and may God bless you.

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delora's picture
Replies 7
Last reply 12/21/2013 - 6:43pm
Replies by: G-Samsa, arthurjedi007, POW, Anonymous

Have any of you had the Vemurafenib Followed by a Continuous Administration of Ipilimumab treatment plan?  What are the side eddects?  Do doctors prescribe main medication to alleviate some of he pain?  This is the trial I may be starting.

 

Thanks,

Delora

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aliersk's picture
Replies 2
Last reply 12/21/2013 - 5:37pm
Replies by: aliersk, Anonymous

I have one cycle worth of tremodar I paid $3k for which my husband did not take. He sadly passed away last month and i've been wondering what to do with it.

I wish everyone success with their treatment with this awful disease.

Please send me a private message.

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lucy3's picture
Replies 3
Last reply 12/21/2013 - 10:26am
Replies by: Linny, SABKLYN

recently i posted that i had refused interferon after being randomized to the interferon arm of the ipi clinical trials.  i feel i made the appropriate decision for myself at this stage of my life.   certainly i am not agaist clinical trials, just against interferon.   does anyone have any information regarding vaccine trials that are either dermal or intravascularly used as an adjuntive therapy for this stage of mel?  i have read about a couple at the university of va.   mayo clinic has a new one.   what has been your experience?  have these  vaccines been successful in any way.   i want to be pro active, and would like to have some therapy rather than watch and wait.     thanks for your knowledge and help.  lucy3

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Replies by: Mat, Anonymous
Regression Associated With Favorable Outcomes in Stage I/II Melanoma
Br J Dermatol 2013 Dec 01;169(6)1240-1245, S Ribero, S Osella-Abate, M Sanlorenzo, P Savoia, C Astrua, G Cavaliere, C Tomasini, R Senetta, G Macripò, MG Bernengo, P Quaglino
Research · December 18, 2013
 
 

TAKE-HOME MESSAGE

  • The role of sentinel lymph node biopsy (SLNB) in patients with melanomas with regression is controversial, as is the prognostic significance. In a retrospective analysis of 1693 patients with stage I/II melanoma, results showed favorable disease-free and overall survival associated with regression in the primary melanoma. Further, the rate of those who later developed regional node involvement with a previously negative SLNB ("false negative SLNB") was lower in those with regression.
  • Regression in melanoma appears to have a more favorable prognostic role than was previously thought, and the use of SLNB in patients with thin melanomas without additional risk factors does not appear necessary.
Commentary by

"These are fascinating data that fly in the face of the general sense that regression implies that the true Breslow depth would have been greater prior to regression, engendering an increased risk of metastases. There will likely be other datasets that can be evaluated or reevaluated to see if this holds true to help guide us in our care of melanoma patients. In the meantime, we will have to explain to patients that, when regression is present in thin melanomas, the data are not completely clear with respect to risks of metastasis and survival." – Eliot Mostow, MD

"It will be interesting to see how this finding holds up in other datasets and studies. If consistent, perhaps this may imply that regression signifies a good immunologic host response to the malignancy. However, this is speculative at this point." – Ashish Bhatia, MD

ABSTRACT
BACKGROUND

The prognostic significance of regression in primary melanoma has been debated over the past few years. Once it was considered to be a negative prognostic factor, as it may have prevented proper melanoma thickness measurement, therefore affecting the staging of the tumours. For this reason, it was considered to be an indication for sentinel lymph node biopsy (SLNB) in melanoma < 1 mm.

OBJECTIVES

To ascertain the utility of SLNB in thin melanoma and to clarify the role of regression in disease-free survival (DFS) and overall survival (OS) in our series.

METHODS

We analysed data collected from 1693 consecutive patients with AJCC (American Joint Committee on Cancer) stage I-II melanoma.

RESULTS

Globally, SLNB was performed in 656 out of 1693 patients. Regression was present in 349 patients and 223 of them were characterized by thin lesions. SLNB was performed in 104 cases of thin melanoma with regression. The majority of regional lymph node metastases were observed in patients who did not undergo SLNB (89 out of 132). Among the remaining 43 'false negative' patients only three showed regression in the primary. Using the Cox multivariate model, histological regression maintained a significant protective role [hazard ratio (HR) 0·62, P = 0·012 for DFS; HR 0·43, P = 0·008 for OS] when corrected for the principal histopathological and clinical features, despite SLNB.

CONCLUSIONS

We confirmed that regression alone should not be a reason to perform SLNB in thin melanoma and, on the contrary, it can be considered a favourable prognostic factor in patients with AJCC stage I-II melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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delora's picture
Replies 11
Last reply 12/19/2013 - 11:17pm
Replies by: delora, swissie, Anonymous, buffcody, awillett1991, JoshF

I had the PET scans last Thursday along with a brain MRI.  The nurse called on Friday and said the PET Scan was clean, but they did not have any results for the brain MRI.  I was happy to hear the news but am still concerned about the Brain MRI.  I know I probably shouldn't, but I started researching on the likelyhood that melanoma could spread to the brain from the leg first.  Has anyone had this happen or heard of this happening?

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