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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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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Anonymous's picture
Replies 8
Last reply 3/28/2015 - 2:07pm

My friend aged 62 years was diagnosed with metastatic malignant melanoma in April 2014. HPR showed malignant melanoma of sole with invasion of reticular dermis, tumor thickness upto 3mm no PNI deep margin 1 cm away and 7/10 pelvic lymphnode positive with extracapsular extension and 8/09 ingunial lymphnode ECE. She underwent surgery in May 2014.

 

The doctor opted for observation. She was doing fine till Oct 14, when she complained of imbalance and right lower limb weakness.The MRI showed multiple intraparenchymal lesion scattered bilateral, frontal, parietal,left occipital region largest measuring 2.5x2.3 cm. She received external beam radiotheraphy to whole brain from 27/10/14 -6/11/14. PET CT on 17/1/15 showed mildly metabolically active lesion in left external iliac region and brain lesions with interval changes. She was doing completely fine . She one day complained of pain in both knees and had difficulty walking. We had to support her even to go the restroom. Her 6th chemo was scheduled on March 2 . We went to the doctor and informed him about this. He delayed chemo for 1 day and gave her meds like mannitol etc. Then continued with her chemo and said the pain is not related to lesions in brain, She got discharged on March 7. She came back and was not able to get up herself due to weakness. Next day she was in a hazy sort of situation, taking time to understand. Her right leg and right arm had become very weak. We rushed her to emergency the next day. The doc ordered an MRI of the brain. The reports showed multiple intraparenchymal well defined nodular lesions scattered in frontal ,parietal,left occipital regions, largest measuring 3.1x2.8 cm in left frontoparietal region. Moderate perilesional edema is noted with effacement of frontal horn and mild midline shift of 3.5 mm towards right.

They asked us since it is last stage and the problem has reoccured, there is little hope. Now they would be doing stereotactic RT from 12/3/15  for 10 days but arnt hopeful if it would help. They say she has just 3-4 months to live. In the meantime her condition has improved slightly . She is able to get up on her own and there is less weakness in right arm and leg. Her all other reports are good.

Just 3-4 months to live when she has shown improvement..how is this possible? Is this illness so dreadful? Is there no chance of survival in case of brain mets? Looks like my world has come to an end after hearing this..can anyone please help? Is there any ray of hope.

Stay Blessed!

 

 

 

 

God bless you

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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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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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Julie in SoCal's picture
Replies 9
Last reply 3/27/2015 - 10:51pm

Hi there friends!

 

Yes we need some good news!  After seemingly forever (ok, only 3 weeks!) I now have a new date to start treatment. It's taken a lot of wrangling between Rock Star Doc's office, my insurance company and Merck, but I've finally gotten a date to begin Pembro!  I start on Monday afternoon.  Also, because of all the insurance denials and foot dragging (and the fact that I don't make a lot of money), Merck has accepted me into their access program and I'll get it free for a year.  AMAZING!!!!

 

So grateful!

Julie

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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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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Aundrea's picture
Replies 11
Last reply 3/27/2015 - 4:18pm

For those of you who are NED survivors, I would just like to see some statistics.  Make it short and sweet.  My husband is IIIc, resected at the moment and is hopfully getting approved for the ipi/nivo 2 arm blind trial in the next 2 weeks.  We know he will get one or the other.  So I just want a roll call and Im going to print it out for my husband whom has been emotional just to let him see the hope I see daily looking at this forum! 

List: 

Diagnoses date 

Stage 

How long NED 

What treatment used 

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tony9511's picture
Replies 7
Last reply 3/27/2015 - 2:20pm

Hi I am one of the victims of this terrible disease.  I was diangonosed with Melanoma, hade local WLE Surgery, and less than a year later it came back and spread to the lymph nodes in my neck.  I know my survival rate is not good, especially with it coming back so soon.  I did the interferon for one year and it was pure hell on me.  A few months past my last injection of interferon, my body hurts just as bad in fact worse than my year on melanoma.  I have major pain in my bones and my joints.  My question is does anybody know or experienced this?  Thank you so much I anxiously await responses.  I am a 41 year old male.  Also does having it come back so quickly affect my survival rate?   Tony

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Speedster's picture
Replies 2
Last reply 3/27/2015 - 9:57am
Replies by: 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: Anonymous, vivian

Hello everyone,

I'm a 40 year old male with a family. I am considered high-risk (my father had stage i melanoma, I have well over 50 moles including atypical ones, dysplastic moles removed, fair-skinned, lots of exposure when I was young, etc.) I go to a derm every 6 months as it is, but I am very interested in getting mole mapping done. I have become consumed with the possibility/likelihood of melanoma in my life and want to be as pro-active as I possibly can.

 

Does anyone know of a mole mapper in the DC area?

 

Can I go to Cancer Centers (Washington Medical Center for example) for annual or semi-annual checkups, even if I have never had melanoma yet?

 

DO cancer centers offer mole mapping usually?

 

 

Thanks for any input. I greatly appreciate any help anyone can offer.

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BrianP's picture
Replies 1
Last reply 3/26/2015 - 9:19pm
Replies by: jahendry12

Thought this was kinda interesting and gives some more thoughts on why combo therapies will probably be the future for treatments.

 

http://www.npr.org/blogs/health/2015/03/23/394132747/why-the-war-on-canc...

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barbudo2005's picture
Replies 11
Last reply 3/26/2015 - 9:13pm
Replies by: Squash, barbudo2005, arthurjedi007, Anonymous

Is there a healthy way I can gain weight?

Squash - (2/28/2015 - 7:08pm)

You can eat all the food you like but if you have faulty protein metabolism which is common in cancer patients then you wont put on weight.

You need to start taking digestive enzymes e.g. porcine pancreatic enzymes and you need to take high doses of them.

I couldnt put on any weight after losing 10kgs and going from 84kgs to 73kgs. In the last three months without changing diet i have put back on 6kgs taking high doses of pancreatic enzymes. I take 60 a day. 10 caps 1 hour before meals and 10 caps in between meals.

 

Hi, Squash

I am on zelboraf for 12 months and I've lost 12 kilos. I went from 73 to 61, thats 1 kilo for month!!!!

I read your post and it make a lot of sense. If you read what is Zelboraf is B-Raf enzyme inhibitor  so I think it may inhibits all kinds of enzymes.

You say you take 10 caps. What does that mean in terms of units of lipase? For example, Creon 10000 has 10000 units of lipase.

Thank you!

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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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We met with the melanoma specialist yesterday.  My husband has ctage lllc resected with surgery almost 4 weeks ago.  Our dr is doing the clinical trial of nivolumab vs yervoy, 2 arm study.  Not sure which drug my husband will get.  He said this trial just started to see how it works for stage lllc.  Originally, our oncologist offered radiation and interferon and then refered to the melanoma specialist at Baylow Sammons texas oncology dallas.  After speaking with the melanoma onc yesterday, he felt interferon would not be best option and radiation would not either plu he could not perticipate in the trial if he took radiation.  The clinical trial drugs are approed by FDA for stage 4 melanoma and he said they are working on other forms of cancer as well.  Dr feels he will meet all criteria to enter trial and he signed all contract papers yesterday.  I hope this was a good choice, we are young with 2 children.  My husband works in the sun and uses sun screen but now, after being at his job for 6 years he feels he needs a job chnage in the midst of all this, im afraid for him to get a new job knowing he will start treatment soon and what boss would put up with that from a new employee.  His work is working with him now very well and all they want is him to be healed, and we hope maybe they will try to get him on other equipment in a cab to keep him out of the sun, they have worked well with keeping him out of as much sun as possible.  I feel we have a lot on our plate as all you you do on this forum.  Lastnight my husband started crying that he did't want to die.  I know you all fear that, I have hope though from reading this forum seeing all you stage 4 and 2, 5 and plus years NED.  I really need to keep talking him into getting on this forum because it has given me hope.  Any advice is much needed.  Have you been on these drugs?  What stage where you then, how long have you been NED?    

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