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
Replies 6
Last reply 5/14/2013 - 5:51pm
Replies by: Anonymous, Janner, Phil S

I don't get how a person would know to even ask to get tested for a cancer gene?

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Sandy11's picture
Replies 7
Last reply 5/14/2013 - 3:32pm

Any recent experience with Chemo?  My husband completed IPI treatments in December.  IPI was awesome against the lung mets, but hasn't touched other tumors.  He also is among the not so lucky 2% that came away with Adrenal gland issues.  (Currently controlled with hydrocortisone)  He is not symptomatic and no mets in vital organs... that's the good news and he's still positive and fighting the fight.  He ws negative for the BRAF gene, so the doc says the next treatment option would be chemo.  We know that doesn't have the best track record against melanoma, but anyone have experience to share?  Nothing happening right now as my husband is feeling pretty well and plans on enjoying the summer. 

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THP's picture
Replies 5
Last reply 5/14/2013 - 1:19pm
Replies by: Anonymous, kylez, thrashter, THP

My husband will begin biochmotherapy for the first time next week.  I would love to hear feedback from anyone that has been through this.  What to expect, any tips or advice on the best way to get through this with the least amount of side effects.  We are not looking forward to this AT ALL!  Any help would be appreciated!

Thanks!

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Anonymous's picture
Replies 4
Last reply 5/14/2013 - 1:13pm
Replies by: Anonymous, Janner, POW

Had the original biopsy, full excision, wide excision with 'margins' is scheduled for the end of this month.....It was on the rim of my ear...that skin is so thin anyway, (and not much left since they keep cutting and stretching!)  is there a chance it could have gotten into my cartilage?.... also, they havent mentioned SLNB... should I ask? It is diagnosed at level 2 stage t1A, but they dont have details like exact thickness, or mitotic rate, which I understand are important factors... My doc is only an ear/nose/throat doc upstairs from my primary physician, and he hasnt refered me elsewhere, even with this upcoming surgery with margins... He insists on doing it... I dont want to question his knowledge, but I am worried that he's either not going to get all of it this time either, OR that it has already spread to nodes in my neck (one of my nodes was swollen, he felt it, said it wasnt swollen ENOUGH to be worried.. I dont know what to do :( :( :(

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buckytom's picture
Replies 5
Last reply 5/14/2013 - 12:23pm

Working through my doc at Mayo I started the 14 day on/14 day off Leukine treatment on April 23 - last of the first round treatments was on May 6. Did not have any side effects the first week - started to feel it second week - but the worst was the week AFTER i was done with treatments, still feeling very fatiged/achy/headache yet today - 6 days after my last treatment. Does anyone have any experience where their side effects came after their last treatment? Just trying to gauge when I can expect to feel a little better - and what the next round of treatment might be like.

Any help would be appreciated!

Tom

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JoWen's picture
Replies 7
Last reply 5/14/2013 - 8:51am

Hello....I am new to the bulletin board and have been reading through posted topics, not knowing exactly where or how to begin, Knowing that much detailed information is needed, I hope I have included all that's important.  We are at a point of not knowing which of the options given are the right to choose....any info would be greatly appreciated.

 Approximately 6 weeks ago, my fiance (age 63) had a "mole" removed from his neck, just above the shoulder line.  Phone call from PMD came and stated it was "malignant melanoma" Seen by general surgeon the following week and his affect just didn't sit well with me and immediately know a second option was going to be obtained.  Upon receiving the path report it stated the following:  Malignant Melanoma, Nodular, 2.5mm in thickness extending to the base of the biopsy with a separate portion of tissue showing a mm thick portion of melanoma.  Greater than 10 mitosis per millimeter squared. mm of ulceration. Melanoma seen in vascular spaces.  Clark level IV (deeper invasion cannot be excluded)  No perineural invasion.  Tumor infiltrating lymphocytes - non brisk.  cautery effect. incompletely excised.

Consulted with a melanoma surgical oncologist at the James Cancer-Research Institute @ OSU and surgery was scheduled two weeks later for a wide excision and sentinel node biopsy.  Day of the surgery, lymph node mapping performed and 2 sentinel nodes were removed.  Of the two, one showed metastatic malignant melanoma.  Of the five supraclavicular nodes, none showed evidence.  The path report also states that the largest focus of metastatic malignant melanoma measures approx 3mm in greatest dimension for the positive sentinel node.  Lesional cells are present in the lymph node parenchyma and capsular sinus.  No extracapsular extension is identified.   An incidental predominantly intradermal melanocytic nevus is present in the excised site. The positive node stained positive for Melan-A, HMB-45 and Tyrosinase.

The surgical oncologist set up an appointment with a medical oncologist for evaluation of systemic therapy options this Tuesday.  She gave two options...the first was completion of node dissection vs. MSLT2 participation.  She stated that a full body ct would be scheduled....pet scan is not done because she said these are microscopic cells and would not be picked up.  She also mentioned that with treatment option 1, the node dissection, the pharmacological treatment is interferon, which is not her choice because of the severe side effects.

We are trying to process and fully understand what lies ahead and what is the right decision moving forward.  I sincerely appreciate any information based on the results above.  

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abrowell's picture
Replies 4
Last reply 5/13/2013 - 9:28pm
Replies by: AllyNTAus, KnowThyself, Anonymous, Linny

hi all.  i am new to these boards as a user but have been reading them for the last few weeks--so helpful.  my husband had a mole removed from his bicep in march, was diagnosed with melanoma in early april.  the tumor was .8, with no ulceration and to trace of mytotic rate.  we were told the standard of care is to breathe a sigh of relief and do nothing. he's 45 with three kids (13, 12, 10).  it didn't like not knowing if the cancer had already spread, even though he was such a low risk for spread (something like 96% chance it had not spread).  i researched and found that at 40 years old and .75+ depth, SNB was starting to be recommended.  so we pushed and got it done.  unfortunately, two of four lymph nodes removed were cancerous (i don't know the details yet...macro/micro, etc.).  he just had a petscan on friday and will have lymphandectomy (sp?) on tuesday.  so this weekend and the last week has been awful and we are hoping for some good news.  i think he is stage iiia and we are hoping to stay there.

so here are several questions.  1) has anyone had such a "small" tumor that has spread to lymph nodes?  2) he feels perfectly fine, perfectly healthy, besides the surgical spots.  i'm guessing that from reading here that that means nothing and we'll find out soon enough whether it has spread to organs and other lymph nodes?  3) we are at stanford, and i feel very good about his surgeon.  he has only recommended petscan...should one get other scans or is this fine for now?  4) i know for the oncology portion that cal pacific and ucsf are highly recommended; has anyone stayed at stanford for the melanoma oncology (dr. reddy)?  5) finally, a good friend whose husband died of liver cancer recommended a doctor who runs a company called "good medicine."  you meet with this group (multiple doctors, nurses and researchers), they review all your records, and they can help recommend where you might be treated, with whom, etc, based on your needs as a family and the doctors' expertise, your stage, etc.  they are not specific to cancer or melanoma.  has anyone used a group like this? 

thank you for any thoughts you have.

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aldakota22's picture
Replies 7
Last reply 5/13/2013 - 8:20pm
Replies by: awillett1991, aldakota22, buffcody, Anonymous, kylez, WayneG

Tomorrow marks 20 months I have been on "Z".I am extremely happy with that milestoneThere are still issues I face . Aprils Cat scans showed small  spotsin the brain .With subsuquent  MRI, melanoma is detected.Will have additional scans in late June to monitor  them.Praying that with Gods help and"Z" that all will be good. Keeping my PMA at high level.Like all here striving to change name to NED.All in all feel great and live normal.Just retired in Feb from 2nd career at USPS and I am now collecting  early Socilal Security.Physical side affects on "Z" have been more of a nusance than serious.Never thought at this stage of life that planning for the future would be based on access to major melanoma centers.So be it.Beat the Beast.  Al

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Replies by: mel123, Anonymous

 

Hi there - I went to the doctors recently about an itchy mole that I had on my bottom.  She thought it was fine but said it was up to me if I wanted to see a dermatologist.  So I decided it would be a good idea to get it checked.

Upon arrival I was immediatly told it was 'suspcious' and she wanted to remove.  She asked if I sunbathed nude because of where it was, to which I confirmed I didn't, never have and that part of my body had always been covered up.  She clearly didn't want to believe me as she went on to say that I probably wore something more skimpy when I was younger.  I know this is not true and can see from the whiteness of my skin in that area that it doesn't see sun.  What I can tell you is I have olive skin that easily tans, I hardly have to see the sun to get colour.  I have always put sun cream on and the most of an issue I had was prickly skin on my arms and chest when I was a teenager (which was caused by the suncream blocking my pores -especially waterproof types- so I tried a million different types, until 'allergy' type sun cream was invented and helped).  So if I was going to have anything that was sun related I would fully understand if it was on my arms, legs etc that have seen the sun, but not on my botton.

Anyway that evening she took it out, said that she thought it would be fine.

A week later, I had a call to come back and was told that it was melanoma, but the good news it was less than 1mm.  I was told I needed to return so she could remove more of the area and then would need to return every 3 months for the next 3 years.  I left in total shock, not really knowing what to say.

That evening I researched all over the internet and got progressivly scared at the information.  How it could spread, life expectancy etc.

Next day I went back and had more of the area removed with 11 stiches.  Whilst I was there I told her again that I have always been covered in that area, but again she said it must have been when I was younger.  I asked a few more questions to get clarification - ie so this is a stage 1 and what about my other moles and what else will happen and left not really knowing much more than I'll get a call or letter to confirm the results from the latest area she removed in a few weeks, to book an apointment with the nurses to get the stitches removed and she'll see me somepoint in the future...

So I'm confused, I have melanoma on a part of my body that didn't see the sun, but I'm told its sun related.  I am covered in moles and freckles and always have been.  I tan easily but always put sun cream on.  I'd say most of my moles and freckels are not of an even round shape, they are all mostly of odd shapes, again they've always been like this since I can remember.

So I don't know anymore, I don't know if I should be scared that every 3 months I'm going to have more and more removed, that its spread, that I'm going to see my 2 year old grow up.  If we are going to be able to have the other child we were just planning for now.  Its all just not clear for me.

Can anyone help advise in anyway please?

Thank you.

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Anonymous's picture
Anonymous
Replies 6
Last reply 5/13/2013 - 12:37pm
Replies by: kylez, POW, washoegal

Hello everyone,

I am a "newbie"to this site. I am still learning how to use the site so forgive me if I make any mistakes. 

I think that you are so wonderful to help each other & share experiences. I am lucky that I found you and I need your help.

I am a stage 4 patient. After doing IPI, I was cancer free for over 12 months.

This week I had scans and I got devastating news. I have a "5" mm lesion of the posterior left frontal subcortical white matter. This is my first brain met and I have NO tumors anywhere else. I am very scared. Getting a brain met was my worse fear in life.

I just moved to  Southern California. I am considering crainotomy  and Novalis SRS ( not Cyberknife or Gamma Knife)

I would sincerely appreciate  any input and experience you have with Novalis SRS & crainotomy.My main concern are these 4 areas:

1.  SIDE EFFECTS- Comparing SRS & Crainotomy:  How has your experience (side effects) with SRS or Crainotomy effected your health that you still are having problems dealing with long term side effects? What is your experience with side effects

2.  STERIODS & ANTI-SEIZURE MEDS-I have read past  MPIP posts using the search function that because of side effects of SRS & Crainotomy that you have to take steriods & anti-seizure medicine. Is that true? For both the SRS & Crainotomy are steriods & anti-seizure medicine necessary? What is your experience with steriods & anti-seizure medicine.

3.  MORE THAN 1 BRAIN MET-I have heard that if you have 1 brain met, you will probably get more because more  microscope cells are highly likely in the brain. Has anyone just had 1 brain met and for how long ago was that???

4. RECOMMENDATION for a Radiation Oncologists or Neurosurgeons in SOUTHERN CALIFORNIA area that you had a good experience/outcome with and what the MEDICAL FACILITY? If you had a bad experience, I would also find that valuable information too.

Thank you so much for taking the time to read my post & to reply. I am sorry that my post so long but I have lots of anxiety over my brain met and lots of questions.

Betsy

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Hello,

I am stage IIIC since July 2012.  I had a relative small fatty tumor on the underside of my forearm close to elbow.  This happens to be the same side where I had the lymph node dissection late last year.  They have told me the fatty tumor was nothing and has not shown up on any scans.  Over the last 4 days though, I started having a little pain and it began to swell and is tender to the touch.  Has anyone heard of melanoma attaching or spreading to benign type tumors?  I believe I need to have it checked immediately.

Thank for any comment.

Everyday is a Gift so Fight Strong, Live Long

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/13/2013 - 10:05am
Replies by: mellie, Anonymous, JerryfromFauq

To whoever may be open to this sort of thing:

 

http://www.cureyourowncancer.org/why-hemp-oil.html 

 

This will be my next step if excision doesn't take care of mine, or if it recurs....

 

I'm sure laws vary by state and country, so don't get yourselves into trouble trying to make it yourself, but do some research, I'm sure there are plenty of places that sell it pre-manufactured...

 

Worth a shot!

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Hi all,

 

My wife has had her 3rd dose of Yervoy last week. The day after she had some bad dizzy spells. Since then she has had small what she call waves of dizzy spells.....but they do not seem to last that long...this morning so far nothing...just curious if anyone has experianced this as well. Thanks

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lisab60's picture
Replies 28
Last reply 5/13/2013 - 8:28am

I had surgery 2 months ago to remove lymph nodes in my left groin and the primary tumor on my left foot. Right now I have "No Evidnce of Disease". My Dr. Gave me the option of interfuron for 1 year or bio/chemo for 4 months (1 week on and 3 weeks off). I chose bio/chemo. I start treatment on the 21st of may at MD Anderson. Has anyone had this treatment for "PREVENTITIVE" measures? I would like to know what to expect. I know everyone is different but just curious. Thanks.....Lisa

"Bring the Wood"

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michelleaudie's picture
Replies 2
Last reply 5/13/2013 - 8:09am

I had a operation May 2012 and the Dr was suppose to remove 3 moles, she forgot about two of them and only removed one - I never heard back from her about the histology results. In April 2013 removed the other two, and one of them Melanoma In Situ - I had a wide exision and now will go for screenings every three months.

 

However, after my diagnosis I requested the results from the mole removed in 2012 as I want to be on top of this diagnosis. When I got the report it said

"the lesion is present at the deep margin of resection and is histologically incomplete exised (? shave biopsy) Further clinical correlation is advised"

 

The Dr never phoned me to advise! So, in the past two weeks it growed back, and it was removed yesterday, so now the wait starts again for another histology report.................... Hopefully nothing will be wrong with it, but it is on such a personal spot on my body :(

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