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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Jme's picture
Replies 12
Last reply 5/22/2014 - 10:39am

 

Hello all,
I have posted here before and really appreciate all of the response and advice we have received..I am posting again because I feel like we are starting to get a grasp (if that is possible) on this crazy melanoma world. When you are thrown in.. It takes time to grasp all of the terminology, and take an understanding of our own unique case as we have come to see--every case is different. My husband has asked me to repost his questions specifically so if they are redundant please bare with me:
 
Overview of our diagnosis: we first noticed a cyst like growth on the clavicle area , base of the neck, in September 2013. It was thought to be a sebaceous cyst by our plastic surgeon. It was removed in December 2013. It was a 9mm amelonotic Nodular melanoma located in the dermis which path thought to be a metastasis. Of course, we went searching for a primary site. No other melanoma could be found. In December 2013 we had a wide local excision of this area with sentinel node biopsy (sentinel node was found to be on the opposite side of the tumor). At that time the margins were clear as was the lymph node. PET and CT scans showed no evidence of disease. We followed up in April 2014, (3 month check) with another negative CT scan but noticed that a spot had changed on the edge of the WLE scar. After a dermatological biopsy, the spot was found to be the same. Melanoma in the dermis and metastasis. To date no primary has been found. The biopsy from the 2nd spot was read with clean margins. After reaching out to the melanoma international forum, we were advised to go to a center that specializes in melanoma. We spent May 13-20th at M.D. Anderson. The results of ultrasound, CT, PET, MRI show no evidence of metastasis. They have recommended another wide local excision of the area with possible skin graft. And perhaps local radiation depending on the path findings. (MDA wanted our original slides and tumor for their own path to review) We are BRAF positive. The general consensus is that the primary was probably attacked by his own immune system and likely won't be found. We understood the medical oncologist's reasoning that because the 2 tumors were found in the dermal region-it would have traveled from another source. Because of the size of the Nodular tumor and the recent recurrence we have been staged as a 3b or 3c. (Stage 3, tx, n2c) or perhaps a stage IV if the primary site was distant and that we do not know. We all agree on additional surgery with or without radiation. It is our understanding that we have 3 systemic options: ECOG 1609 (interferon vs ipi) or the combi-ad (BRAF inhibitor) trials or watch and wait. 
 
Questions for the forum: (please excuse if we are asking the same question, as we are trying to still understand all of this)
 
1. Would doing Yervoy (ipi) and waiting on the BRAF inhibitor make sense at this time: our reason for asking is that we are getting differing opinions. One says do the BRAF inhibitor because the success rate is higher. Other says that it is only a temporary fix and we should save this for later should another tumor show up? (We understood that the melanoma becomes resistent at some point to the BRAF inhibitor) Please clarify if we have misunderstood.. 
 
2. This seems like a crazy question-- but does the watch and wait make sense? Our doctor said that there could be a chance that we totally cancer free. 
 
3. We are hesitant about doing any radiation because of the potential complications and the fact that it doesn't really effect survival rate. And that doing radiation may preempt us from future clinical trials.. Thought?
 
4. Does participating in the ECOG-1609 or the Combi-Ad effect our ability to do the anti PD-1 extended trial? 
 
5. We have heard that preliminary results on the ECOG study should be released on June 2 at the big cancer meeting in Chicago. So, what does that mean to us? Would we be able to go to our insurance company with a case (pending good results from study) and get ipi without going into a trial? 
 
6. Since we have been stages somewhere between a stage 3 and a stage IV -- is there anything that we should try without going into a trial?
 
7. Is there any data on the known side effects of ipi? And, any data on whether ipi has the potential for melanoma resistance if taken too early?
 
8. Does taking Yervoy eliminate us from MK3475 EAP?
 
9. Do we qualify now for MK 3475-EAP? If so, who is offering the trial?
 
10. Is there any of the other treatments that would keep us out of MK-3475 EAP?
 
11. We have read that some people leave melanomas in place to monitor the success of drug therapy. Can you explain?
 
Thank you ALL for your support and advice. It makes a huge difference.
Jenny
jennyedwards
 
Posts: 4
Joined: 01 May 2014 14:33
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mwcollins's picture
Replies 5
Last reply 5/22/2014 - 11:29am

First the AWESOME news. Kevin's scans were clear today!!! This is his first round of scans after the small bowel resection in February where they removed an apple sized tumor, a foot of intestine and 20 lymph nodes (only 1 being positive for melanoma). My question for all you scholars out there is the doctor said his next scan will be in 6 months because of insurance coverage. I know Kevin is very happy to avoid being injected with radioactive isotopes, but knowing that melanoma doesn't 'play' by any rules, I'm thinking 6 months is too long to wait. What are your thoughts? Am I being overprotective or is this the right course of action? Thanks in advance!!!

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sofistef's picture
Replies 8
Last reply 5/22/2014 - 12:45pm

Hi,

 

I had a shoulder MRI today to evaluate a presumable shoulder tendinits, and we received the horrible news that there is in fact a head of the humerus fracture due to a tumor!!. I'm in the phase 3 Ippi/ Nivo/ Ippi+Nivo trial. Last scan showed nothing and my doctor confirmed that the CT with contrast that I get every 6 weeks should have caught this. Next week i will have a PET CT , hopefully it will show nothing, as the MRI showed enough already. I find it so hard to believe that a tumor can grow that fast in a matter of weeks!! We a so floored by the news that I cannot think what to do next. I'm Braf negative . They will unblind me tomorrow to see what I can get. I'm so scared !!

 

Thanks

Dana

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Hey Group -

Does anyone have a link or any information as to what the 'First Interim Analysis" of the MSLT-II clinical trial showed?

Was complete lymph node dissection or monitor with ultra-sound showing the most promise?

 

Thanks

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Anonymous's picture
Replies 6
Last reply 5/22/2014 - 2:10pm
Replies by: paul, ecc26, Nadia, tcell, Mat

Hi,

Can anyone tell me when their sided effects started and what they were?  This may be the next step and finding out how soon and what to generally expect would be a great help to me.

Thanks!

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Anonymous's picture
Anonymous
Replies 3
Last reply 5/22/2014 - 4:00pm
Replies by: Anonymous

If you haven't seen it yet, cancer warrior Megan Kowalewski's dance video set to Kelly Clakrson's "Stronger" is a truly uplifting clip that is sure to make you smile. Check it out at https://www.youtube.com/embed/BaQdwTsVtCY?feature=player_embedded%22

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/22/2014 - 4:16pm
Replies by: Anonymous, Janner

Is stage 1b still considered early stage melanoma, or is it only stage 0 and 1a?  The depth of my melanoma was 1.8, and there was no nodal involvement, but I sometimes feel afraid to hope it could be considered early and that I may be "done" so to speak with melanoma.  Thank you so much for your advice and words of wisdom. I am in awe of the incredible warriors I read about on this site. I only pray that I could have the strength you have shown.

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mwcollins's picture
Replies 1
Last reply 5/22/2014 - 8:23pm
Replies by: Bubbles

Just thought I'd fill you all in on the latest roller coaster ride. Yesterday Kevin got the clear PET scan results (yea!). Today we get a call from the scheduling place to schedule his MRI. He responds that it is scheduled for November. They then have him talk to the treatment coordinator. She sends Kevin the results of the PET scan showing something 'not 100%' with his liver. Well, I guess one part of his liver took on more contrast than another part. There is no mass nor was there a determined amount of contrast intake, but they want an MRI just to be safe.

After I got a chance to talk with her, I got to understand that if Kevin had just a routine check up with normal labs done, there would be no reason to do this. Even with the information they have, they deem it 'normal', but given Kevin's melanoma history, they don't want to take any chances. I am so greatful to have such a thorough medical team working with us! Now to get through an MRI!

Oh and btw, the treatment coordinator agrees with me that Kevin should be scanned every 3 months and will make sure the insurance covers it! Love this team! It definitely helps when you trust your team of doctors.

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/23/2014 - 8:07am
Replies by: DUSTILANE, Socks

My Dad has been recently diagnosed with metastatic prostatic adenocarcinoma. I know this is off topic, I am a stage IV 4 melanoma survivor. I'm just worried he Is not in the right place being cared for by specialists in advanced prostate cancer. Any words of advice out there for a very concerned daughter?

Be Brave

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Can cancer be stopped in its tracks? Even cured? The cancer documentary event of the year has now arrived
(NaturalNews) The most important cancer documentary series ever produced -- what I'm calling the "Healing event of the year!" -- has now arrived. It's called The Truth About Cancer... More info at

http://www.naturalnews.com/z045253_cancer_documentary_prevention_natural_cures.html
 

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

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Hey Group- My wife was diagnosed with Melanoma in April. Breslow was 1.2mm, mitonic rate <1.mm2, mole on left shoulder blade. We were told at UAB that they found literally one cell in a sentinel lymph node and recommended that we watch and observe. We went to MD Anderson for a second opinion. They confirmed the one cell to be Melanoma, but said that standard procedure is to remove the remaining axillary nodes, regardless of how small the count is. They are not making us, but are strongly recommending we have the second surgery. They feel this gives her the best chance of it not returning. Tough call, but we are scheduled for surgery out there on June 11. Any advice on the lymph node dissection? Said it is similar to what breast cancer patients have, but not quite as bad due to the area not being exposed to radiation or chemotherapy and they get additional lymph nodes with breast cancer patients up around the collar bone. My wife will not have that, but she will have a drain for about a month. I have never dreaded something so much yet ready for it to be over with at the same time. If she doesn't have the surgery, MD Anderson would scan the lymph nodes every 3 months with an ultra sound. If/when it showed up, then they would take the lymph nodes out, but we would at that point probably be further down the line than we wanted to be. Everyone we have talked to except UAB, is against the"watch and observe" philosophy and say attack this stuff aggressively at the beginning. In other words, get the rest of those lymph nodes out. This is basically the MSLT -II clinical trial without being enrolled in it.

Thoughts and/or advice?

Thanks

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Anonymous's picture
Anonymous
Replies 5
Last reply 5/23/2014 - 3:37pm
Replies by: kylez, tschmith, BrianP

I'm not sure I've ever seen pictures or video of Dr. Rosenberg before. Meet him... kind of, on this TV news clip from a Washington D.C. station. 

http://www.wusa9.com/story/news/health/health-alert/2014/05/22/immunotherapy-nih-cancer-health-alert/9436859/

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/24/2014 - 3:37pm
Replies by: RJoeyB, Anonymous, sofistef, cbs805

After receiving the devastating news about the head of the humerus met. I went today and met with the radiation oncologist and they will decide if they will treat the met with cyber knife of with regular radiation.

This is completely new to me and I don't know what to expect from either of them. Did anyone have similar experiences?

Also they scheduled me for a PET CT next week,  and I'm terrified what that will might show!!! It's just plain horror movie, going from almost NED to having this big tumor in a matter of weeks. I strongly believe that this monster was hiding in my shoulder for a longer time and the CT just failed to detect it.

Prayers

Dana

 

 

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