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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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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Minnesota's picture
Replies 16
Last reply 1/15/2012 - 1:33pm

Hi all, I hope it's okay to ask these questions..

I am having an SNB and WLE next week for a 1.45mm SSM with a mitotic rate of 5. I was told that all my lymph nodes will be removed in that area at the same time if they find anything.

This is what I don't understand:

I have read many patient stories here, and also in newspaper/magazine articles. I keep seeing where a person has the melanoma removed, sometimes having SNB, continuing all their follow-up (with good/clear news along the way), and then discovering they have mets in other organs.

How do they get there?

Were they already there from the primary before the melanoma was diagnosed?

Can you have clear lymph nodes, but already have mets somewhere else?

Thank you for any answers, I am not trying to scare myself, I am just trying to understand.

 

Persistence (sometimes) Prevails When All Else Fails

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bruski1959's picture
Replies 10
Last reply 1/20/2012 - 10:00pm

We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

We have done the paperwork for Yervoy co-pay assistance.

Have contacted our insurance company United Health Care and the specialist pharmacy, and Yervoy is covered, but not sure what co-pay will be until the oncologist writes a prescription.

First  question is the potential side affects sound pretty terrible, but oncologists we have spoken with have not seen the severe side affects, more the rashes, and treatment with prednisone helps alleviate the symptoms. Is this pretty much the experience of others who have taken Yervoy?

Jackie's oncologist mentioned that he has seen more issues with the 3rd and 4th infusions than with the 1st and 2nd infusions. Is this the experience of others who have taken Yervoy?

I have heard numbers like 20% co-pay, and I have heard between $60,000 and $120,000 for total cost of Yervoy treatment. The Yervoy co-pay program looks like you pay $50 per infusion, and they will pay maximum of $5000. Trying to figure out what actual out of pocket expenses are for this for planning purposes. What has been the experience of others with paying for Yervoy?

Saw something about not being able to use health care reimbursement funds for Yervoy. We max out our health care reimbursement, and last year ran out in August, due to the several surgeries and hospitalizations. Is that really true you can't use health care reimbursement to help pay for Yervoy copay?

Has anybody used Yervoy with GP10? If so, were results any better than those who use Yervoy by itself?

The oncologists we have spoken to indicate that it is better to use Yervoy sooner than later, earlier on in the disease process, that it takes longer to start working, but it also lasts longer. Can anybody comment on this?

Appreciate any advice or answers anybody can provide.

Thanks,

Bruce

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bruski1959's picture
Replies 3
Last reply 1/23/2012 - 10:26am
Replies by: bruski1959, TSchulz, Anonymous

We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

We have done the paperwork for Yervoy co-pay assistance.

Have contacted our insurance company United Health Care and the specialist pharmacy, and Yervoy is covered, but not sure what co-pay will be until the oncologist writes a prescription.

First  question is the potential side affects sound pretty terrible, but oncologists we have spoken with have not seen the severe side affects, more the rashes, and treatment with prednisone helps alleviate the symptoms. Is this pretty much the experience of others who have taken Yervoy?

Jackie's oncologist mentioned that he has seen more issues with the 3rd and 4th infusions than with the 1st and 2nd infusions. Is this the experience of others who have taken Yervoy?

I have heard numbers like 20% co-pay, and I have heard between $60,000 and $120,000 for total cost of Yervoy treatment. The Yervoy co-pay program looks like you pay $50 per infusion, and they will pay maximum of $5000. Trying to figure out what actual out of pocket expenses are for this for planning purposes. What has been the experience of others with paying for Yervoy?

Saw something about not being able to use health care reimbursement funds for Yervoy. We max out our health care reimbursement, and last year ran out in August, due to the several surgeries and hospitalizations. Is that really true you can't use health care reimbursement to help pay for Yervoy copay?

Has anybody used Yervoy with GP10? If so, were results any better than those who use Yervoy by itself?

The oncologists we have spoken to indicate that it is better to use Yervoy sooner than later, earlier on in the disease process, that it takes longer to start working, but it also lasts longer. Can anybody comment on this?

Appreciate any advice or answers anybody can provide.

Thanks,

Bruce

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himynameiskevin's picture
Replies 13
Last reply 1/16/2012 - 4:42pm

Well I finished my fourth dose of Yervoy of December 20th and just got a call from my Oncologist regarding my results. Unfortunately the MRI of my brain which was clear before, now has three lesions. Two are extremely small and one is about 9mm, a little bigger than a pencil eraser. So first things first, Tuesday morning I'll be scheduling an appointment with my radiation oncologist to see about zapping these things out of my brain, just like the one they zapped over a year ago. I'm hoping these go away as successfully as the other one.

My oncologist has yet to see the CT of my chest/abdomen/pelvis. I just picked up the disc and I'll be taking it to him first thing Tuesday morning to see what it shows. With the news of the brain, I don't predict the results be in my favor. But come Tuesday, we'll know the full status and hopefully discuss possible options.

Naturally, this came as a bit of a shock and I'm a little worried, not sure how my time and options are looking. This waiting is the hardest part. I'm kind of out of the loop as far as options and new trials that may be available, if anyone has any suggestions or information that might be beneficial, I'd sure love to hear it. This board helped me through this exact situation that I started in a year and a half ago, gave me hope, helped me see things more clearly, and essentially got me "on the mend" for a little while. And here I am asking for a little help again. I'm down, but not out. And far from done. I figure if I got to a better position from where I started once. I could do it again.

-Kevin

Ps. By the way I still feel fine, I feel as normal, pretty sure no abnormal pain or anything. Also, my doctor told me not to rule out the Yervoy yet, he said sometimes it can take a while to kick in, so I guess I'm still hoping for that. We'll see.
 

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mrsmarilyn's picture
Replies 4
Last reply 1/17/2012 - 3:37pm
Replies by: mrsmarilyn, Suzan AB

Hello- We have been rolling along wonderful on BRAF/MEK GSK trial since 02/2009.  HOWEVER, a rapidly growing mass has not occurred in shoulder and humerus.  So painful, we have to have surgery scheduled quickly.  Has anyone had such a mixed result - with 7 tumors that have shrank, and now all of a sudden this shoulder tumor is growing rapidly?  Has anyone had shoulder reconstructive surgery?  We will be going back to Nashville.  If we are disallowed from the currentl clinical trial of GSK/MEK - what now?

Thanks - Love and Prayers to all.

MrsMarilyn

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Theresa123's picture
Replies 4
Last reply 1/18/2012 - 1:13am
Replies by: Rona, Theresa123, hope4cure1

Thank God for Dr. Boasberg at the Angeles Clinic.  I had a response to the Yervoy, I had two 4 dose rounds with 3 ml/kg.  Two tumors have shrunk, and one got bigger, Dr. says it is probably inflamed.  This is my 12 catscan/petscan results.  He says I have chronic Stage IV cancer now not terminal.  That is better!!!  I have had interferon (horrible!,) Biochemo, and TIL (at NIH) with no results until now.  I have had a lot of nausea, exhaustion, coughing, and rash but that is a piece of cake compared to the side effects all the other treatments gave me.  Yay!! 

Every day is a miracle.

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/20/2012 - 8:16pm

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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SABKLYN's picture
Replies 3
Last reply 1/18/2012 - 6:54am

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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