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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bdhf's picture
Replies 10
Last reply 1/18/2012 - 11:42pm

For those of you who have either dealt with this or have some base knowledge, I would love some advice!  I had one 3 cm brain met in Dec 2011 which was resected and so far we have not found any other mets.  I am being offered radiation and have to choose between whole brain radiation therapy (WBRT) or Sterotactic Radio therapy (SRT or gamma knife).  I am not quite sure which to choose at this point.  Since there were no other mets it seems reasonable to me that the SRT is a better option as I am leary of the WBRT when there is no other measureable disease.  My thought, and that of one of th two radiation oncologists that I have spoken with, is that I could do the SRT for the tumor bed and then if there are any other mets in the future I can get the WBRT for that, particularly if I am unlucky enough to get brain mets that are inoperable.  I have a call in to my oncologist so that I can speak with her about it but I know I need to make a decision soon and I am just stumped.  Any thoughts or input would be greatly appreciated.  

Thanks!

Brenda

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Lauri England's picture
Replies 3
Last reply 1/17/2012 - 5:07pm

I called my Onc office yesterday morning at 9am to see if I could get my PET scan results.  The lady at the front desk confirmed that the Path report was there and the doctor had signed off on it.  She said a nurse would call me later with results.  Well I called again at 4pm and was told that they were very busy today and nurse probably did not get to it yet and to be patient.  Well, then suddenly it was 5pm and the office was closed.  At 8:30am this morning I received a call from nurse there and she just had some questions about a release of medical records that she received from Melanoma Clinic in GR.  She said she sees that there is a note out there on my electronic file to contact me for Path results.  She asked if she could place me on hold for a minute, It was about 5 minutes.  Anyway she come back on and said she could not give me results to my test but she would tell me that from a nurses point of view the results looked OK...So not to worry myself to much.  That was all the info she could give to me and said the doctor wants to give me results Thursday at my appointment.  Are you kidding me???Do they not realize how stressful waiting is????No probably not. When we got off the phone I called Breslin back and wanted to see if I was still going to be contacted by a nurse with the results that I was told I could get and had confirmed with the 1st phone call yesterday that they were in and the doctor had signed off of them.  The lady I spoke to this time said if the nurses called each patient with results to tests that had been run they would be on the phone all day long.  No way I could be hearing this.  I wanted to explode.  She told me that worse case scenario I would get the results Thursday.  I am so upset.  I have never had a problem getting Path report over the phone, ever.  The last time in October I was told that the nurse had to get the doctors permission to release path results to me but it was same day.  I was also informed both of my doctors are out today so there is nothing I can do today.  The last time the doctors permission was needed to release info they found some things and I can't help but get a bad feeling this time.  I am trying to get through the rest of today and pray they call tomorrow.  It just does not feel good to me and I have a bad feeling.  Any thoughts????

Don't sweat the small stuff. There are bigger fish to fry!

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CMH's picture
Replies 2
Last reply 1/17/2012 - 12:32pm
Replies by: Minnesota, Janner

I noticed a "beauty mark" on my neck in 2009 (ignorantly didn't worry about it.)  That same year I developed extreme itching all over my body, especially my legs and especially at night.  Any pressure on my skin leaves a blotchy red hive for 10 minutes or so.  While the hives are present I can feel a warm burning sensation.  This was new and very strange for me. A derm told me I had dermatographic urticaria, or skin-writing.  In October of 2011 I went to a new derm for something else and she removed 3 "ugly ducklings" (one was the beauty mark on my neck!)  That one came back amelanotic melanoma (Stage 1b), one was moderately atypical, and one was sBCC.  I had a PET scan (negative) and a WME.  My SNB was negative.  Has anyone else ever experienced a problem with hives and itching prior to melanoma diagnosis?

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Replies by: Jenjen

URGENT – TODAY – Seventeen Magazine Seeking Young Melanoma Survivor

Seventeen magazine is continuing their good work to educate their readers about the risks of tanning and of melanoma.  They would like to identify a young woman, age 15-25, to feature in their story.  It is possible that the interview may involve travel to New York in early February. 

If you have a history of tanning, have been diagnosed with melanoma, and are a woman age 15-25, please complete this very brief survey no later than noon, Wednesday January 18: http://www.surveymonkey.com/s/SWHVSPH

We are grateful to everyone within the MPIP community for your help in educating the public about melanoma! 

Sincerely,

Shelby - MRF and the Jones Public Affair team 

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Anonymous's picture
Anonymous
Replies 5
Last reply 1/18/2012 - 6:35pm
Replies by: KatyWI, mrsmarilyn, CarolA, Anonymous

about to have an slnb in armpit with wide area excision on my arm with hand that i use for cleaning up after going to toiler

after slnb will i be able to go to toilet normally and clearn up with hands on predominant arm?  if not, what options to prepare for

tia for your advice 

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JoshF's picture
Replies 8
Last reply 1/18/2012 - 1:54pm

Good Morning-

I was wondering if anyone out there could answer some questions about imaging tests. I had a PET/CT (I think CT was included...not sure) in April of 2011...No Evidence of Distant Disease. November/December of 2011 I had CT of Chest/Neck (found cyst in sinus), MRI of Brain (NED), and CT of Abdomen & Pelvis which showed a 1.5cm spot which onc thought was nothing but given melanoma history wanted an MRI which came negative as it was as he expected...a hemangioma of the liver. So has anyone run into similar situations? Also wouldn't a PET scan pick these things up? As you are all aware of how sneaky melanoma is...it really has me scared. Thanks for support.

J

Let's work for better treatments....for a cure!!!!

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/18/2012 - 8:54pm

Sadly, 

Samantha Channels long battle with melanoma has come to an end. She was taken home to be with God on Sunday, January 15. Please keep her husband and young children in your prayers. R.I.P Samantha.

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Replies by: TracyP, washoegal, CarolA

I am having a sentinel lymph node biopsy done on my right armpit and a wide area excission on my upper arm later this week.

What post surgery impact to expect?

How long to be able to use my arm?

What if any complications to look out for, now to avoid?

How soon can I take a shower?

 

Tx muchly

 

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Suzan AB's picture
Replies 4
Last reply 1/16/2012 - 9:00pm
Replies by: lhaley, Suzan AB

Hello All,
The yoyo melanoma warrior is back online. I was lucky enough to get into the expanded gsk trial at UCSF with Dr. Daud and Dr. Algazi...I am so very greatful to be one of the braf-k folks to be included in this trial. (I was not discriminated against because i was not braf-e...whooohoo)

So far i have an overall 30% tumor reduction with some tumors being resulved...some of the more stuborn boys grew slightly, some stayed the same, and some of the boys just disappeared. George ans Oscar the grouch were removed then tourched before being placed on slides to endure more horrores at the hads of the pathologists...hahahaha

I was wondering if the other braf/mek Warriors were expericing side effects...mine are mangable but they kicked my butt this past few weeks...chills, fever and weird ouchy spots on my legs....i am greatful forfor the side effects because it means the medicine is working...WhooHoo
My best to all with blessings and love hugs,
Susan AB

Presently...One Day At A Time.

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Suzan AB's picture
Replies 1
Last reply 1/18/2012 - 1:54am
Replies by: davidfromsingapore

Hello All,
The yoyo melanoma warrior is back online. I was lucky enough to get into the expanded gsk trial at UCSF with Dr. Daud and Dr. Algazi...I am so very greatful to be one of the braf-k folks to be included in this trial. (I was not discriminated against because i was not braf-e...whooohoo)

So far i have an overall 30% tumor reduction with some tumors being resulved...some of the more stuborn boys grew slightly, some stayed the same, and some of the boys just disappeared. George ans Oscar the grouch were removed then tourched before being placed on slides to endure more horrores at the hads of the pathologists...hahahaha

I was wondering if the other braf/mek Warriors were expericing side effects...mine are mangable but they kicked my butt this past few weeks...chills, fever and weird ouchy spots on my legs....i am greatful forfor the side effects because it means the medicine is working...WhooHoo
My best to all with blessings and love hugs,
Susan AB

Presently...One Day At A Time.

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Manubuzzi's picture
Replies 13
Last reply 9/20/2012 - 11:31am

Greetings everyone,

Just a few lines to tell you that my mother (45 years old) has passed away on January 09th.

She was a great fighter and lived one really good year having this terrible disease, but she lost the battle..

We will miss her so much.... I cant believe that this have happened.

Thank you for all of you, from the bottom of my heart, for your kind words during this terrible period.

Good luck for you and yours! I really want the best for all of you.

Cheers from Argentina.

Manu

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

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Miracle Man's picture
Replies 2
Last reply 1/16/2012 - 9:05pm
Replies by: deardad, Suzan AB

I have been a Melanoma patient since 1998. My melanoma started on the back of my right calf.  I have had multiple surgeries, Two limb perfusions in Philidelphia , Pennsylvania.  Recently, I began taking Zelboraf, because my tumors had a mutation in the melanoma gene.  I started treatment with Zelboraf November 4 2011. PET Scan on October 27 2011 showed two 3 inch tumors in the pelvis on the right side and several small ones. On Dec 26 2011, I turned juandice and went to the ER to check my blood and urine. The lab results showed my numbers very high.  They wanted to do a CT scan to see why I was jaundice. I had  PET scan already scheduled for 12-27-2011. I took the PET scan.  My Dr.Called me with the BEST news I had for the whole holiday season that evening.  He said do you believe in MIRACLES? I said YES. The Dr. said my 3 inch tumors shrunk to thumb nail size. I had surgery set for 1-10-2012. I went for the surgery to have the rest of the tumors removed. When I woke from my surgery my wife said the Dr. couldn't find the tumors. The Doctor came to my hospital room and told me I'm the "Miracle Man". The tumors were gone and he couldn't find them. He cut out the suspected lymph nodes and  had them sent to the lab.  The lab report found no melanoma cells.  Zelboraf worked for me.  The rest was taken care of by the Holy Spirit and Jesus. My Dr. calls me the "MIRACLE MAN".

Believe like child that God can help you. Do what the Dr. tell you and take your tests,etc. Be your own advocate. Do your own follow up. Hospitals and clinics are bureaucracies and make too many mistakes.

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zaccarin's picture
Replies 16
Last reply 1/21/2012 - 11:30pm

My husband had four infusions of Yervoy from September 9 to November 19, 2011. I will describe his situation with the hope that his story helps others and that someone might have some suggestions for him. At this point, we are truly in need of suggestions. We are in new York

Diagnosed with a scalp melanoma 2003, my husband had a sentinel node biopsy January 2004 and subsequently, removal of 31 lymph nodes, with one contaminated. The doctor then suggested what was believed to be the standard of care at the time, Interferon, alpha, which he had from for ten months, from 2004 to 2005. When we went to Sloan Kettering in 2003, we were told that he had a 30% chance of surviving to 2008. He was NED until 2009. During this period, he did qigong, and we incorporated a lot of raw foods and juicing.

My husband was very confident and happy that he had beat the melanoma, so he stopped doing qigong and let work responsibilities consume him. In fact, as he now has reduced his duties, three people are doing his job and having difficulty keeping up. This caught up with him, as in 2009, a PET scan revealed a one sub-centimeter lung nodule, an omental lesion of 15mm and a neck lesion in the area directly below the original scalp melanoma. He had surgery for omentum lesion 2009 and surgery for neck lesion on January 2010.

His melanoma became more aggressive after the surgery. It was, as I was told now, "in transit." In May 2010, however, another neck lesion in nearby location (under original left scalp melanoma in May 2010) spontaneously resolved within days. I had read on "Life Extension' that Tagamet could reverse melanoma, gave him some, and it seemed to work. The PET scan revealed that it had "resolved."  All that remained were the lungs.

The Daoist Doctor of Chinese medicine that my husband began to see in 2009 prescribed teas and food therapy that led my husband to have stable disease in the lungs until May 2011. It seemed to me that things only worked for short periods of time. Instead of one, now there were three sub-centimeter lung lesions appearing in the PET scan.  We then tried macrobiotics and a different form of qigong over the summer of 2011. The results were not good.  By August 2011, we saw the growth of three lung lesions and pleural thickening. The PET scan of August 15, 2011 indicated that there was a 10 cm. mass. Many suggestions, over the summer and after the PET scan that my husband should try Yervoy, so he began in September 2011 and he had his last infusion in November 2011. The November 22, 2011 scan indicated that the lung melanoma was now 17 cm. Terrible chest pain began after the 2nd infusion. The administering doctor told him that this pain was likely caused by inflammation caused by Yervoy.
In December 19, 2011, my husband began radiation.

I now understand that it would have been best to reduce the tumor load prior to beginning Yervoy. I know that there are late responders, and that these late responses can begin anywhere from six months to one year after Yervoy; however, if one does not have an increase in Absolute Lymphocytes and has an increase in tumor load that is greater than 25%, then it appears unlikely that one is a late responder. Additionally, while everyone I spoke with in the summer seemed to indicate that late response was the norm, I am now reading that it only happens in a minority of individuals. I am unclear about whether the 15-20% response rate to Yervoy takes into account late responders. I have not seen much literature or case studies on Yervoy late responders because it is so soon after FDA approval.

Had we known what we know now in 2003, this is what we would have done:

Obtain a molecular profiling test from Caris Medical, as this is covered by most insurance. http://www.carislifesciences.com/

We did this in the midst of Yervoy treatment at the suggestion of a colleague of mine. We discovered that my husband has low MGMT and that his tumor has a poor ability to repair itself. Given this, a strong dose of chemo, rather than immunotherapy, would have helped at the outset, when the tumor was less aggressive. Now, it obviously has been allowed to grow, and aggressive tumors are very clever at transforming themselves, so temozolomide would likely not be a good chocie.

Additionally, we discovered that my husband has high SPARC expression. This means that ablaxane, or nab-paclitaxel, might work. Studies for this on melanoma do not seem too promising, as it works on 14-20% of the study participants; however, it's not much different from Yervoy, so had we known this it would have likely been a better choice than Yervoy.

Molecular profiling is available, and I urge everyone to take advantage of it so that they can make decisions that are more specifically suited to their profile.

At this point, my husband is going to begin a radiation boost next week. We hope that the chest tumor, which is causing excruciating pain, will shrink and that the broken pieces of melanoma will cause the Yervoy to kick in, as this is what my husband's oncologist mentioned might be possible. He also has increasing vomiting. I hope that this is a late response to yervoy or related to his increasing use of painkillers. I noticed that Lisa13 mentioned that her oncologist believed that her nausea was related to a late response to Yervoy. I certainly hope this is true.

If anyone has any light to shed on possible options after Yervoy or helpful comments, i would be most appreciative. Hearing your stories, and your encouragement to each other has been inspiring, as being a caregiver is so terribly isolating and sad. I also wrote this because I urge anyone who begins Yervoy to reduce their tumor load, either by simultaneously having radiation or chemo, which can help Yervoy work better.

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cldeters's picture
Replies 9
Last reply 5/8/2012 - 7:57pm

I had a wide excision of a tumor on my right leg, a wide excision of a tumor on my left leg and all the lymph nodes in my right groin removed in December 2011. I met with Dr. Lao at U of M this past week and was told I don't qualify for the typical Stage IV treatment because there are no tumors to measure. He suggested I do surveillance which includes getting scans every 3 months. His second choice was the trial of IPI vs. Interferon. With the low response rates of both of those drugs and the severe side effects, I am wondering if the "wait and see" option isn't the best. I would love to get other opinions from people who were in my situation. This is very scary and hard for me to decide.

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