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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barrykatz's picture
Replies 13
Last reply 4/6/2015 - 10:50am

My father has had his first cylcle of Yervoy. the only side effect so far is very bad itching. to the point where they rash is starting to bleed because of the scratching. Our Dr. said we are not allowed to use any cream on the skin whatsoever. We are only allowed to use Benadryl or Claritin,

 

This really does not make any sense to me. Has anybody used any cream to combat the itchy side effects ipilimumab / yervoy. Please let me know. I really would like to be able to help him with this ASAP. Thanks

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rick1981's picture
Replies 2
Last reply 3/30/2015 - 9:35pm
Replies by: Bubbles, Ed Williams

Hi all,

My wife is taking Dabra/Trametinib (re-challenge after they worked for 5 months up to december) - now in combination with Keytruda. So far it seems the targeted therapy worked for the "new" brain mets (see earlier posts) but the immunotherapy itself doesn't seem to do much (5 infusions so far). 

On Wednesday we'll get a new PET/CT scan and possibly move to Yervoy if the Keytruda didn't do enough.

But I'm writing now because more has been published about immunotherapy plus targeted therapy.

http://melanomanewstoday.com/2015/03/25/ucla-researchers-develop-effecti... (Dr Ribas)

Kind regards,

Rick

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/14/2015 - 1:49pm
Replies by: magnus31, tschmith

research has found that people with vitiligo have a certain blood protein that offers them some protection against melanoma?

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Cee's picture
Replies 6
Last reply 3/31/2015 - 9:00am
Replies by: Cee, Eileensulliv, Julie in SoCal, Anonymous

When you have a recurrence in the form of a bump under the skin, is it something that popped up very quickly or something that began very innocently enough that you watched it until you felt sure it was something to be concerned about?    Did it begin as a red circle and slowly become a bump beneath the skin and change colour?

If it was something that started out slowly, how long before it was at a stage where you were definitely concerned enough to see a doctor about it?

Thank you .

Cathy 

Stage 3a

Cathy

Stage 3a

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Jubes's picture
Replies 5
Last reply 3/31/2015 - 2:28pm

Hi all

just wondering what kind of pain bone met pain feels like. I have lung and chest Mets and for weeks now have a sharp pain in my back when I breathe deeply ( and pain most of the time there. It's more like the shoulder blade area) not unbearable but so it hurts to turn over in bed. I mentioned it at my last one appt but it was a new dr and he said it was probably just muscle pain. I have had it now for at least 6 weeks and won't see the dr till may. So just panicking a bit. Could it be muscle soreness from the pembrolizumab I am  on?

btw really enjoying all the posts from Brian and Ed etc:)

tks anne-Louise 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/2/2015 - 9:28pm
Replies by: Rocco
luv4scjjt's picture
Replies 18
Last reply 4/15/2015 - 11:18pm

Hello everyone..I am new to MRF...New to melanoma as well..I was diagnosed in Jan about a week after my birthday. I went to the doc to check out a weird (ingrown hair like bump) on my leg. I nicked it with my razor while shaving and it didn't stop bleeding all day. next morning i called doc to have it looked at. What i thought was an ingrown hair (no color just skin colored bump) turned out to be nodular melanoma. Let the doctor appts begin.....Since then i have had the excision 4cm circumference...the skin graft...thigh was donor sight....and the sentinel lymph node biopsy..which oddly enough almost killed me..lol. I had an acute anaphylactic shock to the die and crashed on surgery table while they were doing the biopsy..Luckily i was still under anesthesia..I didn't feel a thing..lol. Well the results came back that my lymph node was clear..I was very happy and excited and thought that would be the end of doc apt's seen as i was clear. Then i had fallow up with my oncologist and my heart sank.. I still have to do the interferon treatments. Well not have too..... but strongly recommended. The size of my nodule was 4mm. So he is strongly recommending i go through with the treatments because with nodular melanoma i guess their is a high reoccurrence rate. I am very glad that i am only doing this as a precaution and not because it has spread but of course i am worried about treatment. I am 40 by the way. I am healthy (except for this) so i am sure i will be ok. But i am still worried about side effects...Does everyone get the side effects with interferon or is it some do some don't kind of thing? What are the real chances of it coming back if i do or don't do interferon? Of course i am scared and i hope you all can give me experienced honest answers. I don't need things sugar coated. Truth is best for me.....good and bad. What am i looking at?????

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BrianP's picture
Replies 6
Last reply 4/1/2015 - 2:28pm

Some of you might remember the thread from last July talking about living with stable disease. 

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/living-stable-disease-g-samsa#comment-77579

This article in Psychology Today reminded me of that thread.  I thought it was a really well done article and is so applicable to many of us on this forum.

https://www.psychologytoday.com/articles/201503/the-new-cancer-survivors

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BrianP's picture
Replies 4
Last reply 3/30/2015 - 12:47pm
Replies by: BrianP, Ed Williams, Bubbles

A little background. I'm a pilot and unfortunately due to my stage IV melanoma dx in May 2012 I lost my FAA medical. Last week marked my one year anniversary of stable disease. I was told by a doctor that one year of stability and no new mets would be the absolute minimum the FAA would accept if they were to approve my medical. I think it's a long shot at best but I feel great and I'm optimistic about the future so I thought I would go ahead and submit a request to get my medical back. The worst that can happen is they say no. What I wanted to ask is if anyone has seen any data or charts on Anti-PD1 drugs which gives an indication that if you make it to the one year mark your chances of recurrence are greatly reduced.  Due to the drug being so new I’m not sure the data is mature enough to be able to draw that conclusion.  The only thing I’ve seen that somewhat shows the durability is from a Dr. Hodi presenation (page 8 lower left).

http://tatcongress.org/wp-content/uploads/2014/05/140305-hodi.pdf

Thanks for input anyone might have.

Brian

 

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Replies by: Bubbles, Aundrea

Dr. Weber talked to me about this upcoming trial when I had my last checkup and it is now listed on the ClinicalTrials.gov site.  Not yet recruiting...but here's the deal if you're interested: 

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/new-ipi-vs-nivo-trial-for-resected.html

It would certainly have been a trial I would have signed up for back in 2010 when I needed it!!!  I wish you all my best!  Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Eileensulliv's picture
Replies 8
Last reply 3/28/2015 - 6:16pm

It's been an interesting week. Since a week after my first infusion of Yervoy and Nivolumab at Hopkins, I was getting intermittent high fevers, nausea and vomiting, and a few other minor side effects. My onc said we are going to delay my second treatment until I get rid of the fevers. Then last week they became not so intermittent at all... Ended up in my local ER Thursday night, and sent home after some fluids, anti nausea meds, and Tylenol. Friday morning I wake up with 103.3 fever and vomiting, so it was off to Hopkins I went. I have never stayed in a hospital before, so I was a bit nervous, but their staff and nurses are exceptional, and made me feel right at "home"! 

I pretty much stumped the doctors as to why they couldn't get my fevers and nausea to go away. They tried the beta blockers again, and stopped after two days. They tried three days of IV antibiotics and no change. Every test and ct came back as normal. So they chalked this one up to a side effect of treatment, and started me on steroids (on day 2 of antibiotics) and just like that, I'm on the mend! The last night of fevers was no fun... 103.5 most of the night, and nurses packing ice packs all around my body every half an hour... Minor bump in the road, and a week's "vacation" in a fantastic hospital. 

However, my onc says he is extremely hesitant about keeping me on the trial, as he does not want to put my body through this again. He is thinking we will just stick to the Nivolumab, but I will meet with him Monday to discuss my options. I would prefer to stay on the trial, but I do know that Nivolumab alone is a very good option. Now that I'm feeling better than I have in weeks, I'm just ready to get this show on the road again!

Eileen 

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Medscape Medical News Oncology

Nick Mulcahy

March 24, 2015

Pembrolizumab (Keytruda, Merck) has bested ipilimumab (Yervoy, Bristol-Myers Squibb) in the treatment of advanced melanoma in a head-to-head clinical trial, according to an announcement today from Merck.

Pembrolizumab demonstrated a statistically significant and "clinically meaningful" improvement in overall and progression-free survival, compared with ipilimumab, the company reports.

The randomized phase 3 study, known as KEYNOTE-006, will be stopped early on the recommendation of an independent Data Monitoring Committee.

The complete data will be presented in the opening plenary session at the American Association of Cancer Research annual meeting in April.

Ipilimumab is currently the standard of care in the first-line treatment of advanced melanoma.

Pembrolizumab is already approved for use in patients with advanced or unresectable melanoma who are no longer responding to other drugs, including ipilimumab and BRAF inhibitors (in patients whose tumors expressBRAF V600). This indication received accelerated approval on the basis of tumor response rate and durability of response.

The new clinical trial pitted two different monoclonal antibody treatment strategies against one another; the programmed death (PD) inhibitor pembrolizumab was compared with the cytotoxic T-lymphocyte antigen 4 (CTLA-4)-blocking antibody ipilimumab.

Pembrolizumab is now the first anti-PD-1 therapy to demonstrate a survival advantage over the standard of care for the first-line treatment of advanced melanoma, according to Merck.

"Evidence from our clinical program for pembrolizumab will help to define the appropriate treatment of advanced melanoma," Roger Perlmutter, MD, PhD, president of Merck Research Laboratories, said in a press statement.

KEYNOTE-006 is a global open-label study of patients with unresectable stage III or IV advanced melanoma who have received no more than one previous systemic therapy.

In the three-group study, 834 patients were randomized to receive pembrolizumab 10 mg/kg every 3 weeks, pembrolizumab 10 mg/kg every 2 weeks, or four cycles of ipilimumab 3 mg/kg every 3 weeks.

 

The coprimary end points were progression-free survival and overall survival; secondary end points were overall response rate, duration of response, and safety, with an exploratory analysis for health-related quality of life.

At week 12 and every 6 weeks thereafter per RECIST 1.1, tumor response was assessed with an independent central blinded radiographic review and investigator-assessed immune-related response criteria.

 

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

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mizmena's picture
Replies 1
Last reply 3/28/2015 - 7:47am
Replies by: Fen

As if it cant get any worse...more crappy news...so ready to get these scans done...i pray that its not other places...

Final Surgical Pathology Report

Final Pathologic Diagnosis RIGHT AXILLARY LYMPH NODE (NEEDLE CORE BIOPSY)-

Metastatic melanoma, with surrounding fibrosis and lymphoid tissue. See comment.

COMMENT There is known history of malignant melanoma, and, in the appropriate context, the current findings are compatible with lymph node metastasis. In addition, molecular profiling analysis has been ordered. Correlation with clinical and imaging findings is recommended.

Gross Description

Specimen A is received in formalin labeled “Burnett, Melinda Ann” and “right axilla palpable”. It consists of multiple friable tan tissue cores ranging from 0.1 to 1.5 cm long and each measuring 0.1 cm in outer diameter. The specimen is submitted in A1. One blue marker included.

Microscopic Description

Microscopic examination reveals fibrosis and lymphoid tissue with metastatic melanoma. Areas of necrosis are noted. Immunoperoxidase staining for S100, Melan-A, and HMB-45 highlights the metastatic melanoma. MCK staining is negative. CD3 and CD20 highlight the background T-cells and B-cells, respectively.

 

blah...so glad i found this group to help me on this journey. This is a foreign language to me.

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Speedster's picture
Replies 3
Last reply 4/15/2015 - 12:53am
Replies by: Speedster, Aundrea

Have an ideas for support here in Austin as I'm just getting strarted having be diagnosed in January.  I am tying to naviagte the emotional side of things as I make the turn toward a clinical trial in Dallas at Baylor Sammons.  I'm Stage IIIc.  Ugh.

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Replies by: JP.2000, _Paul_

Journey DX, a patient research company, is working with patient advocacy group Canadian Skin Patient Alliance (CSPA) on research to understand the potential impact of pembrolizumab on the patient experience.

The research will be used as part of the CSPA patient input submission, to advocate for provincial coverage of pembrolizumab in Canada, so that patients may have access to this drug without paying for it out-of-pocket.

We are conducting telephone interviews (30-45 minutes) with:

1) Individuals from Canada or the US who have been in a pembrolizumab trial

2) caregivers for individuals who have been in a pembrolizumab trial

Absolutely no names or identifying information will be reported.

A compensation of $50 will be provided to those who participate, in appreciation of their time.

If you would like to be involved or would simply like more information, please contact Dr. Jennifer Pereira, Research Director of Journey DX (jennifer.pereira@journeydx.com, 416-485-7387).

Thank you very much for your consideration.

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