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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Anonymous's picture
Anonymous
Replies 5
Last reply 6/15/2011 - 3:08am

Is anyone else getting the half-truth from your melanoma expert?  My doctor recently said that my type of mestastic melanoma is nodular melanoma and it is the most treatable kind there is...blah, blah, blah...Seen two ono doctors in this field and I was just told last Friday that my Malignant Melanoma is nodular...

Question...is there a study being done regarding partial disclosure to the patient vs. total disclosure and survival?  I got nodes popping up with ok, lets see if we can get you into this study...no worries, you can wait....I am so confused!  I need advice from people who are going to tell me the truth about my health so I can make an informed decision not use me like some sort of lab rat…

Warriors please advise…

This is what I found on Nodular melanoma(NM) is the most aggressive form of melanoma. It tends to grow more rapidly in thickness (penetrate the skin) than in diameter. Instead of arising from a pre-existing mole, it may appear in a spot where a lesion did not previously exist. Since NM tends to grow in depth more quickly than it does in width, and can occur in a place that did not have a previous lesion, the prognosis is often worse because it takes longer for a person to be aware of the changes. NM is most often darkly pigmented; however, some NM lesions can be light brown, multicolored or even colorless (non-pigmented). A light-colored or non-pigmented NM lesion may escape detection because the appearance is not alarming, however an ulcerated and/or bleeding lesion is common. [1]:696Polypoid melanomais a virulent variant of nodular melanoma.[1]:696

Presently...One Day At A Time.

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Sherron's picture
Replies 5
Last reply 6/15/2011 - 1:45am
Replies by: LynnLuc, Sherron, Carol Taylor, Anonymous

e-mail me and tell me how Eric and Jill are doing...My computer is still not back...I am just so concerned since I cannot be touch like I used to....My work e-mail is sherron.clevenger.i0ub@statefarm.com

Thank you Carol.

Take Care,

Sherron, wife to Jim FOREVER

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ShariC's picture
Replies 9
Last reply 6/14/2011 - 2:28pm

All - Thanks for the continued support.  The last week I've been very tired - hopefully its the chemo working..but, who knows.  My Asitis (the fluid in the abdomen) is manageable but uncomfortable.  I LOOK like I'm 8 months pregnant!  How strange to be feeling like its birth, when its not!  We won't know until another week if the chemo worked to beat this back, a bit.  Its just a waiting and comfort game right now.  My son, Eli, is AMAZING.  He's doing very well and my Mom is here (his Nana!) for as long as it takes.  My sisters visited for the weekend.  We had a very good time listening to music from our youth (and Smothers Brothers - love them!).  So, things are ok right now...I'm very tired and suspect my blood work tomorrow will show I need a transfusion.  Don't know if this downhill is Chemo...or the big downhill.  Just waiting and trying to enjoy every minute of every day...even though I can't do much. 

Thanks for ALL of your wonderful support and kind words and thoughts and prayers.  Its nice knowing you're all out there and that many of you are stil beating this.  Oh...don't know if I shared I'm BRAF neg...they're triple checking, tho....we'll see. 

Keep positive and keep fighting.  I firmly believe the body KNOWS when its time to stop fighting....I haven't gotten there yet...but, I'm not afraid to get there if necessary.  I will just listen to my body and implore it to handle this "load" - this "tumor burden" as best as possible for everybody concerned.  We'll see.  I'll try to post more when I know more (PET on the 22nd)...results a few days after.  - Shari

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EmilyandMike's picture
Replies 2
Last reply 6/14/2011 - 12:16pm
Replies by: Lauri England, MariaH

 

We have seen all of the “news” about the "new" melanoma drugs at the ASCO conference (not really new news to most of us).  You can see a full list of the melanoma abstracts here: http://abstract.asco.org/CatAbstView_102_121_AA.html

There were a few abstracts about interferon that covered the debate for Stage 3 patients (1 year vs 1 month, 1 month vs observation, long term PegIFN vs observation) and you might be interested to read them... although I am not sure that it clarifies much:

http://abstract.asco.org/AbstView_102_83141.html

EORTC 18991 phase III trial: Long-term adjuvant pegylated interferon-α2b (PEG-IFN) versus observation in resected stage III melanoma: Long-term results at 7.6-years follow-up.

Conclusions:Long-term PEG-IFN therapy in stage III melanoma had a significant and sustained impact on RFS (recurrence free survival), but not on DMFS (distant met free survival) and OS (overall survival). Patients with only microscopic nodal involvement (sentinel node positive) seemed to have a greater benefit of PEG-IFN in terms of RFS, and marginally regarding DMFS and OS. In the smaller subgroup of pts with sentinel node positive and with ulcerated melanoma, the benefit seemed to be the most striking and consistent regarding all endpoints, and was maintained at long term follow-up. These effects have been observed in 2 consecutive EORTC trials (18952 and 18991) involving 2,644 patients.

http://abstract.asco.org/AbstView_102_77947.html

Randomized phase III trial of high-dose interferon alfa-2b (HDI) for 4 weeks induction only in patients with intermediate- and high-risk melanoma (Intergroup trial E 1697)

Conclusions: Adjuvant HDI induction with only 4 weeks therapy neither improved RFS nor OS over observation for patients with intermediate and high-risk melanoma. This trial supports the importance of HDI treatment duration and argues that the approved 1 year Interferon regimen of induction followed by maintenance remains the standard of care for pts with T4N0 or node positive disease.

http://abstract.asco.org/AbstView_102_79446.html

A randomized phase II trial of 1 month versus 1 year of adjuvant high-dose interferon alfa-2b in high-risk acral melanoma patients.
Conclusions: The preliminary results of this study demonstrated no statistically significance were detected in RFS between the 4 weeks and 1 year regimen for all the high-risk population, while a 1-year regimen showed a significant clinical benefit in patients with stage IIIb-IIIc Acral Melanoma or nodal metastases ≥3. Further survival data are needed for long-term follow-up.

http://abstract.asco.org/AbstView_102_80361.html

Intensified high-dose intravenous interferon alpha 2b (IFNa2b) for adjuvant treatment of stage III melanoma: A randomized phase III Italian Melanoma Intergroup (IMI) trial

Conclusions: Our data show that a shorter but more intensive HDI regimen is more feasible and not more toxic than conventional HDI.

http://abstract.asco.org/AbstView_102_80167.html

Health-related quality of life (HRQOL) in the Nordic randomized trial of adjuvant intermediate-dose interferon alfa-2b in high-risk melanoma.
Conclusions: The results of this study revealed significant effects of IFN alfa-2b treatment on HRQOL. The impact on HRQOL is important to consider as part of the decision process on whether or not to use adjuvant Interferon.

Our experience with melanoma: http://emandmichael.wordpress.com/

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joensn's picture
Replies 8
Last reply 6/14/2011 - 7:41am
Replies by: joensn, Anonymous, MichaelFL, LynnLuc

I had surgery on my upper left arm three weeks ago.  I was diagnosed with Stage I Melanoma.  It was very thin and did not meet the qualifications for checking the lymph nodes.  The plastic surgeon cut me about 5 inches down the arm and all the way to the muscle, which I am sure is standard.

Two weeks later I saw the plastic surgeon for a check up on the incision.  He stated to me that when the pathologist examined the tissue that was removed during surgery that there was a lot of atypical cells all through the tissue. That is was widely disbursed and he didn't think cutting it all out was really probably due to how much he would have to cut out.  He stated if we did surgery i would need skin grafts.  He stated it WAS NOT cancer but was atypical.  He said he had talked with my derm and they had decided immunotherapy was the best idea at this point.  I will be doing a topical immunotherapy for 5 days a week for 6 weeks.

Honestly, it all happened so fast that I didn't have time to even think about questions I might have.  I studied up on the subject all weekend and have more question than answers.  I do have a call into the plastic surgeon.

Should I be concerned?  What could all this possible mean?  I have had 6 atypical moles removed from my skin in the past.  I am 34 and there is a history of melanoma in my direct family line.  Can you please give me any ideas?

Thanks, Niki

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Hi, This might be a repeat article, if so sorry...  hopefully it may benefit one of our fellow melanoma family members?

Vaccine May Help Treat Advanced Melanoma

see:  http://www.webmd.com/cancer/news/20110601/vaccine-may-help-treat-advanced-melanoma?ecd=wnl_can_060711

Best Wishes,

Gene

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

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FormerCaregiver's picture
Replies 4
Last reply 6/13/2011 - 8:04pm

Few would doubt that high quality sleep of sufficient duration is essential for good
health. As the amount of sleep that one needs varies from person to person, it is
difficult to say what the optimum amount is for each individual. It seems that most people
need between 6 and 8 hours, but a small number of individuals are apparently happy with
just a few hours per night.

If we are sleep deprived for an extended period of time, our physical and mental sense of
wellbeing will tend to suffer. Sleep becomes even more important when one is trying to
deal with any serious illness such as melanoma.

Although there are many types of sleeping pills that a doctor can prescribe, I feel that
it is best to avoid these medications if possible.

Many people seem to have very active brains that are unable to relax, because there
"always seems to be something happening". If this is a problem, then things like very
gentle exercise and meditation can help.

Good nutrition is far more important than many people realise. Foods that contain high
levels of vitamin B and essential fatty acids seem to help when one is feeling stressed or
anxious.

Here is a site that has a lot of info on this topic:
http://www.helpguide.org/life/sleep_tips.htm

I look forward to reading your comments on all this.

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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lilred75's picture
Replies 14
Last reply 6/13/2011 - 7:17pm

I have not been on here for a long time, but I still recognize many of the posters, and what a wonderful thing that is! For those who don't know me, I am a stage IV survivor since March 2006. I am now 35, and have been NED since October 2007. Despite all the odds, I recently gave birth to a beautiful baby girl, who will be 6 months on June 15. She is our miracle baby, for so many reasons, and she and my husband are my world.

 

I am so excited to hear about all the latest news regarding new drugs that show great promise in fighting melanoma. I had scans last week, and will find out tomorrow if my NED streak has continued. I am more nervous than usual because my doctor often calls me prior to my appt. to tell me all is good (yes he is awesome!), and I have not heard from him yet. He specifically tells me every time that him not calling does not mean bad news, he just may be out of town or unavailable to get the results. But it's hard not to worry!

So hello to all the 'vets' that may remember me, and to all the 'newbies' that are battling the beast. No matter what results I get tomorrow, I am here to say that miracles do happen, and don't ever give up!

 

Sincerely,

Alison

Miracles can happen to those who believe in them.

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CAdesiree's picture
Replies 5
Last reply 6/13/2011 - 7:03pm
Replies by: CAdesiree, Janner

i had posted w questions right after i got my initial pathology reports for my biopsies.  a bunch of you asked that i post the pathology bc it would help you answer my questions.  i dont have a scanner, so im slow.  but this is my original pathology report.  my derm did MOHS and reconstruct... but i am seeking a second opinion bc my derm stopped communicating after the biopsies came back malignant melanoma.  if these reports raise any flags for any reason please let me know.  i am still working w my insurance on getting my second opinion. any help with appropriate questions or concerns is greatly appreciated.  i am really concerned bc i see that melanoma survivors are at a much greater risk of breast cancer (that has already taken most of the women in my family).

CLINICAL INFORMATION:

A) r/o dn. m. m.

B) central lesion, r/o dn vs. mmf

DIAGNOSIS:

A) SKIN, LEFT UPPER BACK (BIOPSY)

     -MALIGNANT MELANOMA IN-SITU, EXTENDING TO THE

     PERIPHERAL MARGINS (SEE COMMENT)

      COMMENT:

        WITH MULTIPLE STEP SECTIONS IN DEEPER INTO

         THE TISSUE, NO FOCAL INVASION OF THE DERMIS IS

          IDENTIFIED.

B) SKIN, LEFT UPPER BACK CENTRAL (BIOPSY)

     -MALIGNANT MELANOMA OF SUPERFICIAL SPREADING TYPE,

     INVASIVE TO A BRESLOW'S DEPTH OF 0.72 MM.,

     CLARK'S LEVEL III

     -SHOWING NO ULCERATION, A MITOTIC INDEX OF

     2 PER MM. SQUARE AND A BRISK TUMOR INFILTRATING

     LYMPHOCYTOSIS

     -DEMONSTRATING NO LYMPHOVASCULAR INVASION OR

     PERINEURAL INVASION OR TUMOR REGRESSION

     -EXTENDING TO PERIPHERAL MARGINS

 

SYNOPTIC REPORT:

SPECIMEN LATERALITY: LEFT

TUMOR SITE: UPPER BACK

TUMOR SIZE: NOT GROSSLY IDENTIFIED

MACROSCOPIC SATELLITE NODULE(S): INTERMEDIATE

HISTOLOGIC TYPE: SUPERFICIAL SPREADING MELANOMA

MAXIMUM TUMOR THICKNESS: 0.72 MM. BRESLOW

ULCERATION: NOT IDENTIFIED

MARGINS: EXTENDING TO THE PERIPHERAL MARGINS

MITOTIC INDEX: 2 PER MM. SQUARE

MICROSATELLITOSIS: NOT IDENTIFIED

LYMPH-VASCULAR INVASION: NOT IDENTIFIED

PERINEURAL INVASION: NOT IDENTIFIED

TUMOR REGRESSION: NOT IDENTIFIED

TUMOR INFILTRATING LYMPHOCYTOSIS: BRISK

LYMPH NODES: NOT APPLICABLE

PATHOLOGIC STAGING (pTNM): NOT APPLICABLE

 

REPORT NOTES:     KEY PORTIONS OF THIS CASE HAVE BEEN ADDITIONALLY

                                      REVIEWED BY ONE OR MORE DERMATOPATHOLOGISTS

PATHOLOGIST:     Board Certified Dermatology and Dermatopathology

 

GROSS DESCRIPTION:

A) Specimen, labeled as "L upper back" is received in

    formalin and identified as "my name".

     The specimen consists of a brown punch biopsy,

     measuring 0.2 cm in diameter and 0.5cm in

     depth.  The specimen is entirely submitted in one

     cassette(s).

B) Specimen, labeled as "l upper back central lesion"

     is received in formalin and identified as

     "my name".  The specimen consists of a

      brown punch biopsy, measuring 0.2 cm in diameter

     and 0.5 cm in depth.  The specimen is entirely

     submitted in one cassette(s). 

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jimjoeb's picture
Replies 3
Last reply 6/13/2011 - 11:56am
Replies by: jimjoeb, Lisa13, ValinMtl

Hi everyone!

Well I'm home from the hospital and have had my first homecare visit. The surgery (left inguinal dissection) went well. My surgeon only took the superficial nodes because there was no macro evidence of cancer. She was also able to save the vein. Thank you, God, for a skilled surgeon!

I feel well but need to remember my energy will have its limitations for a while. I have one drain that I am able to look after myself. The goal is 20 cc per day for two days in a row.

From a pathology point of view, I expect the results by June 17 from two new biopsies by my dermatologist took on June 8. There may be a provisional pathology report around the same time from the surgery and another biopsy taken by the surgeon in a different spot while I was under general anesthetic. I expect the final pathology report from the surgery the week of June 27th.

In the meantime, I'm focusing, or trying to, on recovery from the surgery and in doing all of the right things for lymphedema risk management. My surgeon has referred me to a physiotherapist who specializes in CDT. I hope to meet with that team this week. In the interim, I'm wearing a compression stocking on both legs and keeping the left leg elevated as instructed by the hospital medical team.

So far so good and I am determined to maintain my optimism.

Be Not Afraid-God is with you always Stage IIIa

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Erinmay22's picture
Replies 17
Last reply 6/13/2011 - 6:46am

Just thought I'd give folks an update.  Had CT scan done on Wednesday - came back as no evidence of  disease!  I am excited but still can't believe it.

Quick recap on history - Jan scan showed 12+ nodules ( between both lungs), March 1st VAT's biopsy confirmed melanoma in the lungs.  After a long wait for a trial to open up, April 19th scan showed no evidence of growth (all but 1 spot in my lungs were gone!).  So while I am BRAF +, I couldn't get in the trial.  June 8th scan shows no evidence of disease!  

I should also note that I have not had ANY drug treatments yet.  If we hadn't done a biopsy on the spots in March we'd probably just think I had an infection.  Has anyone had this happen?  Going to continue a watch and wait.  Will scan again August 5th.  

Thoughts and prayers out there for everyone!  

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Carol Taylor's picture
Replies 11
Last reply 6/12/2011 - 7:42pm

Treatment Diaries posted this on facebook, and this is a link to their website. Unbelievable service, I checked them out as I' sure Treatment Diaries did.

http://cleaningforareason.org/index.html

This is what they say,

"Fighting cancer is difficult enough, but living with it is even tougher - and that's where the Cleaning for A Reason Foundation steps in.  This  nonprofit offers free professional housecleaning, and maid services to improve the lives of women undergoing treatment for cancer - any type of cancer."

They have a link to find the service closest to you.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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First, Darcy is doing fine.  Hopefully she won't mind be posting a status update.  She speaks often to school children on Sun Safety.  She's actually speaking today - hence me thinking about MPIP.

She was originally dx with stage IIIc in 2004, did a year of INF, and 7 years later - is happily NED.

My thoughts and prayers never are far from those struggling and those who got their wings. 

 

All my best,

Duke (West Hartford CT)

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Replies by: DukefromMA, jag, Charlie S

First, Darcy is doing fine.  Hopefully she won't mind be posting a status update.  She speaks often to school children on Sun Safety.  She's actually speaking today - hence me thinking about MPIP.

She was originally dx with stage IIIc in 2004, did a year of INF, and 7 years later - is happily NED.

My thoughts and prayers never are far from those struggling and those who got their wings. 

 

All my best,

Duke (West Hartford CT)

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