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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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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gabsound's picture
Replies 7
Last reply 6/15/2011 - 2:13pm

Hi,

I could use some advice. Noticed a lump came up next to my lymph node dissection scar at the bottom on my thigh. There is also another in the groin. I had a Pet/CT last week and it came back with comments about some reactivity most likely due to surgery and that there is a new mass in the groin 2.2 x 2.3 cm, a 1.3 cm rounded low attenuation lesion in the right adductor longus muscle as well as 0.6 cm nodule inferior to this and a 5mm subcutaneous modularity in the incision at the knee (site of melanoma #1).

On the Pet scan the groin mass has an SUV of 2.8, the second lesion on PET only measures 6mm and has an SUV of 1.6. The area of decreased attenuation in adductor longs muscle is not significantly hypermetabolic.  The 5mm area in the knee is less intense than on the prior exam (I didn't see it mentioned on the 1st report. They also see slight activity in the area where melanoma #2 (in situ lesion) was excised. Probably just from the excision.

I called the oncologist and saw him. He didn't sound overly worried as the SUV levels were not very high. He said "see the surgeon" and that they would talk. That was only last Friday and today being Monday they haven't talked yet. I thought the surgeon would stick a needle in and aspirate these lesions today, but he doesn't think that will give him all the info he needs. He wants to talk to the Oncologist and come up with a plan. Of course I'm worried because I can feel both these things and the one that's supposedly 6 mm feels  at least 2.5 cm in size. It seems to have come up fast and grown in the last week. Surgeon says surgery on my leg is going to make swelling and lymphedema worse. Tentative plan made to biopsy these areas in surgery. Oncologist thinks 50/50 chance these things are not more melanoma. I don't like those numbers.

I had the month of high dose Interferon previously and finished mid may. My 1st lesion was ulcerated and had a high mitotic rate 10/mm squared. 

Do they usually take these lumps out? Or do they leave them in and do systemic treatment? Or do they do both?

My head is spinning. My family is very worried. My husband started crying when talking to my daughter and she is very worried. Also had to tell my daughter about my sister who has breast cancer-actually a large lesion in one breast and having a MRI guided bx on opposite breast tomorrow. So it could be bilateral and she will likely need chemo to shrink the tumor before they can even do surgery. This sucks!

Now of course I need to research treatment. Don't know if my stage has changed. And then there's the whole alphabet soup of genetic markers. How do I find out about those? Because it sounds like you need to know that to know what best treatment is. I'm feeling overwhelmed.

 

Juiie in Las Vegas

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fgilbert63's picture
Replies 6
Last reply 7/29/2013 - 3:51am
Replies by: JerryfromFauq, jodywood, Anonymous, lkinnaman

Has anyonone seen this?  Sounds to good to be true, however a simple drug like Lovaststin is still in clinical trials for dysplastic nevi.

 

http://news.sky.com/skynews/Home/UK-News/Video-Drug-Discovered-Using-Tadpoles-Could-Prevent-Spread-Of-Deadliest-Skin-Cancer/Article/201103415959042 

 

Frank

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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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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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Anonymous's picture
Anonymous
Replies 13
Last reply 6/18/2011 - 1:11am

I am sure this topic has been discussed before but was curious on folks thoughts.  I was recently diagnosed with Melanoma and have been practicing sun safety but this past weekend I noticed while out in the hot sun (I've been trying to still live my life) that I missed a few spots with sun screen and have a few red spots where I got too much sun.  Ugh, I've been so careful about putting on hats, sun glasses, sunscreen, layers etc.  Should I be totally freaking out that I am just fueling melanoma (even though last scans showed everything was clear?).

Thoughts on this? 

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dani_elle's picture
Replies 14
Last reply 3/25/2014 - 2:34pm

Hello everyone
Just thought i would share my husbands story with you all. We really dont know what to except, this is all still so new tu us.
Let me begin by saying.. My husband has always been pretty healthy. I can honestly say i have only seen him come down with any kind of illness about 3 or 4 times in 7 years! Well it all started about 6 years ago he developed a colorless callus on his left inner heel. He noticed it growing and did get it checked out 2 different times. Drs just ordered x-rays and said it was a callus that could be caused by his work boots ( Hes a cement worker.)
so years past by and the "callus" kept growing and started to bleed and have a smelly discharge. This is when i started to get worried. My husband was always self conscious about this "callus" and would NEVER let me see it!!! it was always covered with neosporin and a bandaid.

So fast foward to march 2011. A dermotologist did a biopsy and on april 18 he was diagnosed with melanoma. We were told that amputation was most likely going to be the plan of care. Later that day i recieved a call from another dermatologist who explained the disease to me & advised me to begin making funeral arrangements and prepare his will !!!!! ofcourse i broke down, i was still in shock... But i managed to put on a straight face.. I had to! We have a 4 year old daughter who i refuse to raise on my own!!!! shes daddys little girl & hes my other half. I wasnt about to start planning a funeral for my 26 year old husband!!!!!

So then next step we talked to an oncologist who answered some of our questions, referred us to a surgeon, & Ordered a CT scan. The ct scan came back normal, But it wasnt until later when i requested records
where i read about an abnormal ct scan "lung nodule" I dont think theres anything normal about that! I asked the Dr to explain the ct scan and she said sometimes these nodules arent cancerous. Is this trueeee?!?!? well she wants to repeat the ct scan in november.

On May 24th my husband Miguel had a wide local excision and a sentinal lymph node biopsy. His wound was left opened and hes got a wound vac over it. A nurse comes out 3 times a week for dressing changes. He didnt tolerate the negative pressure vac very well, the dressing changes were especially painful. Ive never in my life seen a man in so much pain before!!!

We went back to the surgeons for his weekly checkup where the pathology report was given to us. It came back he had a breslow thickness of 19mm & clark level V. The margins were free of cancer so that was a relief.. Atleast his foot can b saved!! Although Melanoma cells were found in 2 of 3 lymph nodes. From what ive read this is not good at all, but i believe in GOD and nothing is impossible for him. The next step is his lymph node dissection which is scheduled for the 21st or the 1st, whichever date is available. Hes also going to have reconstruction surgery on his heel the same day. Im hoping for the best!
I was also wondering what your opinions were on aloe vera. Alot of people reccomend it, so my husband had been drinking aloe vera gel along with supplements from Forever Living Products.

Thanks for reading!
Danielle <3

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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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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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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awg's picture
Replies 6
Last reply 6/18/2011 - 5:26pm
Replies by: jimjoeb, Melanoma Mom, Anonymous, awg, Janis B., lhaley

Hello,

My surgeon mentioned a new(er) Interferon protocol that was different from the 30 day high does followed by 3 weekly injections for 11 months. The protocol was/is 1 weekly injection that has been used(studied in melanoma) for up to 5 years. I do not have any additional details on dose or anything else at this time.

I was wondering if anyone has any information on this protocol. If it is new I like the ideal of 1 weekly injection vs 3 but that may depend on the dose. It sounds similar to an MS protocol to me.

I am scheduled to see my hemo-onc  for my first visit on July 1.

 

Thank you,

 

Allen

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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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dawn dion's picture
Replies 21
Last reply 10/17/2011 - 12:40pm

I know lots of folks here take curcumin and I have been considering taking it myself.  Anyone know how much a person should be taking?    Thanks for the info.

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Lisa13's picture
Replies 6
Last reply 6/15/2011 - 3:35am

Even though none of my lung nodules have been biopsied to confirm melanoma, is the fact that some of them have grown since April make it pretty clear?  The largest is 11mm and the smallest is 3mm. The rest of them don't have measurements - just "tiny nodule" or "other nodules scattered within the right middle lobe do appear larger".  I guess what I"m getting at is even though I don't doubt this is melanoma, maybe not all 15 nodules are.  Once I get going on Decarbazine, I'll be scanned at 2 weeks and if not working, into IPI. 

Lisa

 

Many impossible things have been accomplished for those who refuse to quit

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