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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virginia washburn's picture
Replies 12
Last reply 5/21/2014 - 4:02pm

What a road this has been. My husband has metastatic melanoma (lung, brain, subcutaneous). He has done 2 rounds of Ipi, had Gamma Knife x 3, and just completed whole brain radiation. (He had "at least" 28 brain tumors on his last MRI)

He has an appt. next week to discuss possible Anti PD-1 therapy. He will have to wait a minimum of 30 days, generally recommended 8 weeks for MRI to see if his brain tumors have recurred. So, for now, we are in "Limbo", the so called gray area. We know his prognosis is not good.

I have asked the Cancer Center to refer my daughter and myself for counseling. I'm so numb, I don't feel anything. I HAVE to be strong for my husband and daughter. I know the gates will open eventually. The uncertainty is nerve wracking. This consumes me 24/7. I can't think of anything else, it is always looming in the back of my mind. I have no motivation, no energy, no desire to do anything. Many friends have reached out to me, but I just do not have the desire to do anything.

Some friends have organized a benefit for our family this week end, and I know this will be very difficult.  It's so hard to beleive a year ago how optimistic the dr's. were and how well he was doing. He has recently lost 20 lbs, lost his hair (radiation), very pale. He has that "cancer" look. 

I pray everyday for strength to keep going. I'm exhausted, but I think of my husband and what he is going through, and realize he is facing his own mortality. I can not even imagine what he is feeling.

Virginia Washburn

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Jydnew's picture
Replies 2
Last reply 5/21/2014 - 4:11pm
Replies by: melanomafighter, BrianP

Hi everyone,

I haven't visited this page in a long time.  My husband is 12+ years NED after a diagnosis of 3a at age 26.  Lots of loss and joy since then: new jobs, new homes, the death of our infant son and the births of our beautiful daughters.  Life really does go on, and much happiness is in the smallest moments as well as the big events.

Reading over the posts on this page, I'm struck by how many positive posts there are on treatments for stage iv.  I'm curious what other people think - are treatments much improved over the paucity that existed 12 years ago when my husband was first diagnosed?

I ask because I know my childen are at increased risk of melanoma because of their dad's experience - especially my little red haired, blue eyed, white-as-snow skinned 4 year old, and I dream of the day when melanoma is cured.

Is there hope in these new treatments that it CAN be cured?  At least in the way, perhaps, that a disease like AIDs can now be held at bay and give the opportunity for long-term survival?

Thanks and best to you all,

Wendy

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Jme's picture
Replies 10
Last reply 5/21/2014 - 6:35pm
Replies by: Jme, Anonymous, Gene_S, OzzieK, Wolverine

 

My husband Was recently diagnosed with a 3b or 3c.. Unknown primary, Nodular melanoma. WLE in December with SNLB-  Lymph node clear.  Had a met occur on the edge of the scar in April and biopsied. Which actually ended up removing the met. Margins clear on biopsy. We are BRAF positive.  Where are consulting a second opinion at MD Anderson. Thoughts on PD-1? Yervoy, etc?
Also, his Sentinel node was on the opposite side from his Nodular tumor which several doctors find unusual.. Anyone had this occur?
 

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camping_mama's picture
Replies 15
Last reply 5/21/2014 - 9:33pm

Hi, my 7 year old daughter was diagnosed with melanoma about three weeks ago.  The tumor is a 1b. Thankfully it was small (.47 mm) but had a mitotic rate of 1 and vertical growth so they deemed it a "b" not an "a".

She underwent her wide excision and SLNB on friday and we find out results next week.

I know there are probably only a few folks on here with pediactric melanoma diagnoses.  Can anyone point me to an online support or information group for parents?  I saw the reference from 2 months ago for littlestwarriorspot.com, but the post also mentioned that there was another group.  If anyone has the info for that group and would pass it along I would be very grateful.  Thank you!!

 

 

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/21/2014 - 9:52pm
Replies by: Bubbles, Anonymous, kylez, Janet Lee, BrianP

Can you tell me ate there any people out there who have had long term brain mets. I have just been diagnosed with them and just wondered if I stood a chance x

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SarahW's picture
Replies 3
Last reply 5/21/2014 - 10:13pm
Replies by: Aussielyn, SarahW, NYKaren

My husband has been on the dabrafenib mekinist combination since February. Last Wednesday he started having fever and chills every afternoon and evening and feeling very tired. He is on a 48 hour drug holiday and steroid taper now. 

For those of you who have had these side effects, did the episodes recur once treatment was resumed? Did you have dosage adjustments? Did that work?

 

thanks for your input

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tcell's picture
Replies 5
Last reply 5/22/2014 - 3:39am
Replies by: tcell, kpcollins31, Gene_S, Mat

Hi all,

had my first scans after begin of BRAF / MEK therapy in February this morning and will discuss the results on Friday with my oncologist.

I originally had mets on lungs, liver, adrenals, pelvis and th-10. Hoping that my tumor burden has been reduced at least at bit!

I had no brain mets according to the PET they did back in February. The onc said that because of that there is no need for an MRI but just had a CT of skull, thorax and abdomen done. He suggested that if they find something suspicious in the CT we would do an MRI of the brain

Q: Do you usually get MRI scans with stage IV melanoma every 3 months as a routine? Is the CT still accurate enough to show lesions in the brain, especially when they are rather small?

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Ninniditti's picture
Replies 2
Last reply 5/22/2014 - 4:05am
Replies by: Ninniditti, BrianP

Hi!  I had my first ipi-infusion about two weeks ago. After four days I got ichting, fever and was very tired. Livertests taken were bad so I ended up in hospital where I still am, now one week. I immediatly got cortisol infusions whichte took care of the itching and fever but not livervalues and tirednes. Now the doctors search for reasons to the liverinflammation and treatment. Virus is tested negative so the only reason has to be ip side effects. Biopsi is taken but no results yet. Has someone here gone trough the same and have any advices?

Inger

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ray39's picture
Replies 1
Last reply 5/22/2014 - 7:31am
Replies by: Tina D

Got my wide excision results today and margins were all clear.  They never said it was definitely melanoma and leaned more toward severly atypical.  Thanks to everyone who responded in my time of crisis.  I have more atypical looking moles so this will be an ongoing thing for me.  I wish you all well and will be praying for you.  

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Anonymous's picture
Anonymous
Replies 0

I have to start wbr on Monday and was interested to know if anyone else had revived it and went onto having no brain mets after. Also did there hair grow back afterwards x

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pigs_sty's picture
Replies 2
Last reply 5/22/2014 - 10:10am
Replies by: Mat, Tina D

Hi,

 

Wife has been on Zel since March this year. Noticed the tumour in her lymph node shrink massively (approx 95%) within the first few days and stayed small since. In the last few days we have noticed the tumour feels different (more lumpy, feels more "withered", just different) but not bigger. Has anyone else expereinced this? THanks.

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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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