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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cdnewt's picture
Replies 7
Last reply 9/30/2011 - 1:00am

Hi all.... thanks for this great board.   I have learned a lot here in a short time.  I am, I think, IIIc (3mm melanoma removed from my back, followed by 2cm wide excision and sentinel node biopsy.  Of the 6 nodes removed, 1 had a macro (>1cm melanoma), and the other, a micro.  

 

Anyways, I am looking for information on the best medical centers dealing with Melanoma.  Right now I've been pointed at Sloan-Kettering, but I was wondering about other opinions and centers I should be aware of as well.

 

thanks.

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carol b's picture
Replies 13
Last reply 9/29/2011 - 7:10pm

I was wondering if anyone on here can tell me about having a baseball size melanoma tumor removed from under they arm. What all do they cut out and what am i to expect pain wise and recovery time. I am a little scared and concerned. Any comment will be appreciated because i have been looking it up on the computer on other sites and it seems like a horror story so i thought someone on here has had it done and could give me some correct advice.. Thank You in advance...

Carol b

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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mwilson's picture
Replies 5
Last reply 9/29/2011 - 5:04pm

Hi,

I'm new and hate to meet you all this way.  I was diagnosed as a Type II diabetic last July 2010.  This July 2011 I had a mole on the back of my calf looked at by  a dermatologist and after excision and biopsy, found it was melanoma.  Since it was deep, I then had a WLE and a SLNP with finding of one micro metastis.  Well, so much for happy news in the month of July!

I'm Stage IIIa. I've just had a brain MRI and will have a CT/PET tomorrow and then meeting with the oncologist next week.  He is setting up a referral for me with UofA AZ Cancer Center in Tucson.  Dr. Cranmer. 

The surgeon has recommended that the rest of the lymph nodes be removed.  My hesitancy lies in the fact that my mom had lymphadema and I fully understand the problems managing it.  I did find a meeting at the Phoenix Wellness Community next week that focuses on lymphadema so will go there open minded and increase my knowledge.  I'm just not sure of having the surgery. 

The oncologist and I have talked about 4 weeks of interferon.  My question is - is there any problem with taking metformin and interferon that anyone knows of?  The doctor was looking on line and could not find a reference. 

We are thinking that I just monitor my blood glucose more closely than I usually do.  I don't have a problem with high reading - I'm kind of middle of the road but under decent control with an A1C of 6.4.

Thanks for all the information that you put on this board.  It has surely made me more educated.

Michele

 

 

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piii's picture
Replies 12
Last reply 9/29/2011 - 7:20am

New to this site and to tell you the truth I never talk on boards but I never thought I would have cancer. I was diagnosted on 7/21/11 with a depth of 1.45mm no ulceration. I had the node bi and left arm pit was pos. I am waiting for my drain to be removed after having 41 lymph nodes removed from my left are pit. The drain has been in for 4 ½ weeks and can’t wait to get it out of me. Looks like Friday. One node came back with melanoma but the doctor said it was extranodal extention present.  My question is should I push for Radiation. I see from the board that melanoma is resistant to radiation but I am concern about cancer cells “floating” around and finding an organ. Also they tell me the risk for recurrence is higher because of extranodal extention.  Is that the case? Also I do plan to start interferon as soon as the drain is out. I am a young man at 41 and want to do everything I can to fight this. Anyway thanks for reading.

Peter

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Charlie S's picture
Replies 12
Last reply 9/29/2011 - 6:13am

Though I have my own standard for flu shots, wondering what other peoples  oncs are telling those who are undergoing or who have underwnet  treatment  for melanoma.

A nuance to be sure, but I am curious knowing that melanoma is the sum of all the parts and not singular.

Cheers,

Charlie S

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http://www.sciencedaily.com/releases/2011/09/110927072612.htm?utm_source...

 

Earlier studies have shown that many forms of tumour also have a higher expression of the COX-2 enzyme, which is not found in normal tissue but which plays a key part in inflammations and the development of cancer. As regards tumours, it has previously been shown that for unknown reasons COX-2 is induced in tumour cells; a phenomenon often associated with poor prognoses. Further, the knowledge that COX-2 inhibitors reduce the risk of cancer has led to their use in clinical studies for cancer prevention. CMV in turn, greatly and specifically stimulates the synthesis of COX-2 and is thus a possible control signal for tumour growth. COX-2 inhibitors also reduce the production of CMV. The researchers now show in their paper, which is published in the Journal of Clinical Investigation, that tumour growth decreases when CMV is inhibited.

"Our experiments on mice show that tumour growth declines by around 40 per cent when antiviral drugs or COX-2 inhibitors are used separately, and by no less than 72 per cent when used in combination," says Professor Söderberg-Nauclér, adding that this effect is achieved without using chemotherapy.

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

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sss's picture
Replies 4
Last reply 9/29/2011 - 2:46am

Just finished 2nd month of Zelboraf treatment. Appointment with oncologist went very well. Labs are still improving and several subq tumors are no longer palpable!  Scans set for end of 3rd month of therapy as was set up by the clinical trial protocol. Have received 3rd month commercially from specialty pharmacy without issue, since trial now ending.

Remaining hopeful and positive that results continue to be positive

sss

Life goes on as usual. There is no other way.

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patanderson's picture
Replies 2
Last reply 9/29/2011 - 1:12am
Replies by: Cynthia C, benp

Does anybody have thoughts on the recent study showing much better survival for patients on beta blockers?

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Jewel's picture
Replies 15
Last reply 9/28/2011 - 8:38pm

 Hi there,

My husband has been recuperating from a ELND and Skin graft with WLE, while he has been doing well with recovery we are now faced with alot of decisions which I have seen alot of you wonderful people have to make.

We will be going to Sloan Kettering for a 2nd opinion and to hear what they might have to offer. We have done nothing other then surgeries.

My husband is a firm believer in keeping his body and his mind strong....putting all these chemicals in his body when he is showing NED at the moment is hard for him to swallow.

I would appreciate hearing from all you survivors who have had positive nodes and what personal choices you made for yourself. I know everyone responds different and melanoma grows differently in all of us.

Scared and Confused, even though I would never let my husband know that. He has been amazing through all of this.

Thank you,

Jewel

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Gene_S's picture
Replies 4
Last reply 9/28/2011 - 8:22pm

My husband is going for his 30 week scans on Friday and we are praying for more regression or better yet NED.  Will update when we get the results on Friday.

Judy (loving wife and caregiver of Gene

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

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Replies by: dearfoam, KatyWI, kylez, benp, mombase

Our Medical Oncologist called today to discuss setting up with the neurosurgeon for a biopsy of Dad's brain tumors. There are a few to choose from, and he says the recovery is better than with the other options (spleen tumor would risk too much bleeding and require a resection/ week+ recovery in hopsital). The point is to send sample off for the BRAF test as the other sample was insufficient.

Just wondering how that has gone for other people. I worry about dad having a crainiotomy just because he has had problems with other biopsies in the past. Back in April he ws in the hospital over a week when biopsy #1 gave him a lung collapse 3 days after, followed by several blood clot problems etc. Biopsy 2 was OK because they still had him in-house for the recovery. But he already has messed up judgement and reasoning; I worry if treatment goes really well, he will have brain damage (though maybe he already does to a degree) and not be able to practice law professionally again (which is all he wants to do).

However, we will all enjoy telling him he has a hole in his head! We do try to keep things light-hearted.

Thanks in advance for your thoughts and replies.

-DF

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mom3girlsFL's picture
Replies 3
Last reply 9/28/2011 - 5:27pm

PET scan last monday, onc appt yesterday.

IMPRESSION:  There is slightly increased uptake within a one cm node in the left popliteal fossa.  This is a nonspecific finding which may be both inflammatory and/or neoplastic in nature.

So, CT of left knee (?) scheduled thurs morning.  Onc not too terribly concerned although he does not like the location being on the left side (radical groing dissection, left, sept 2010, node involvement).

As for my other concerns - frequent headaches? stress. abdominal cramps? stress. leg aches? who knows!  weight gain? ben and jerry's phish food!!!!

Feeling pretty good about it being nothing, but...trying to breath!

:)Laurie

Do not fear tomorrow, God is already there.

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rbruce's picture
Replies 13
Last reply 9/28/2011 - 11:38am

Diagnosed with Melanoma in March.  PET/CT showed tiny tumors in my lungs so now I'm stage 4.  Testing showed that i have the Wild Type mutation NRAS Q61.  Before testing UCSF was talking about the new inhibitors for BRAF that are showing great success, but not for NRAS Q61 mutation.  This week I visited Dr. Steven O'Day at the Angeles Clinic in Los Angeles who suggested Ipilimumab and then Dr. Daud at UCSF the next day who is suggesting Carboplatin and Taxol in conjunction with Axitinib (A UCSF clinical trial).  Any thoughts, experiences, suggestions, ideas would be most welcome as I have to make a decision soon.  Thank you so much!    Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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momof2kids's picture
Replies 2
Last reply 9/28/2011 - 11:10am
Replies by: momof2kids, nickmac56

I had brain surgery back in June 2011, and just this past week my Brain doctor told me I can stop taking the Dilantin since I've never had a seizure.

Unlike the steroids where it took a month of weaning off according to the doctor, this time he wants me off these in 1 week, so instead of 3 pills a day, I'm down to 2 pills a day, and tomorrow thru Thursday I'll be down to 1 pill a day.

Just seems like quick stop, just making sure that seems right?

I am sorta nervous about going off though, I always like the extra protection of not getting a seizure of course, now it's like if my body wants to give me one it will.

So, just anxious to see if anyone else stopped taking theirs that quickly?

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justlittleoleme's picture
Replies 6
Last reply 9/28/2011 - 9:18am
Replies by: justlittleoleme, Anonymous, lhaley, mimi0201, nickmac56

My husband's surgery is Friday.  I have asked them to test the tumor for BRAF anything else we need to request?

We visited with a melanoma oncologist Monday who gave us three options for adjuvant treatment.

1) radiation 2) interferon 3) clinical trial with a)interferon b)Yervoy-depending on which group he would get into.

We will know more once the surgery is completed and the pathology results are back.

I am planning on attending the symposium in Chicago on 10/1.  I am hoping he is feeling better so I can go.  I think there is a lot I may learn.

 

Thank you Tim for this website!  I have learned so much and I feel my knowledge of melanoma is still in its infancy.  I really don't WANT to know more, but I NEED to know more.  I want my husband around for a long time!

 

barb

We don't know how strong we are until being strong is the only choice we have.

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