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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Dave from Ormond's picture
Replies 7
Last reply 2/12/2014 - 2:25pm

I've had some discussions with a few people on here who have had swelling in the Pituitary Gland as a side effect from Yervoy.  I also had swelling which was discovered after 8 days of non-stop headaches from hell.

Here's my question/issue: My pit gland swelling was back in early October.  I was immediately sent to an Endocrinologist and put on Prednisone, Synthroid, and Andro-Gel for low testosterone.  Here it is 4 months later and there is little or no improvement in the function of my pit gland.  Now my ankles are swollen and painful and I've just been told to stop taking the Andro-Gel and see if the swelling goes down.  So my question is to anyone who has had swelling in the pit gland.  Did yours ever start to function again on its own?  I would hate to think that I'm going to have to take these meds for the rest of my life.  I'm only 48 years old!  Is there anything I can do to help kickstart it back up?

Any advice or shared experiences would be greatly appreciated.

Dave

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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eric w's picture
Replies 11
Last reply 2/12/2014 - 12:12pm

Hi all,

My wife had SRS done on a single met a week before xmas. The same day we reintroduced ipi. The last couple weeks she has what she has called pressure behind her eyes and just a funny feeling. She is certain she has another met. She is scheduled for her post ipi scans and mri in early march and does not want to get it done earlier. Curious if anyone else has had this feeling after SRS? Thanks

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LibbyinVA's picture
Replies 11
Last reply 2/12/2014 - 10:24am
Replies by: LibbyinVA, Maureen038, POW, Anonymous

I know of a very young woman in the Chicago area who desperately needs a melanoma specialist. She was dx'ed about 18-months ago and has had no follow-up care after her WLE. I should add she has very limited insurance with high co-pays. However, her mother is willing to help out and will do anything to get her daughter to realize it is crucial for her to continue to have follow-up checks. It's tough sometimes to get young people to grasp that melanoma is something you must stay on top of instead of thinking that surgery took care of everything.

Thanks everyone!

Libby (IIIb, NED 2006)

I have melanoma but melanoma does not have me!

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Interesting that this relationship has been known about since at least 2008.

http://www.cancernetwork.com/end-life-care/synergizing-radiation-therapy...

Excerpt:   "

Reduction to Practice: Preclinical Studies
External-Beam Radiation and Cancer Immunotherapy

In vivo preclinical studies have demonstrated that the combination of tumor-focused external-beam radiation and immunotherapy can facilitate antitumor immunity better than either modality alone. Younes et al[24] studied endogenous T-cell responses to renal cell carcinoma with bilateral pulmonary metastases in a murine model and observed that local irradiation to the left lung in combination with systemic IL-2 (Proleukin) therapy led to greater tumor reduction in both lungs than was achieved by either modality alone.

 

For active specific immunotherapy, therapeutic cancer vaccines are being investigated. TAAs such as CEA and MUC-1, which are overexpressed on a wide variety of tumor cells in vivo,[25] are being studied as targets for vaccine-mediated immunotherapies.[26-29] Chakraborty et al[30] have focused on the combination of low-dose radiation (8 Gy) delivered directly to the tumor, and active therapeutic vaccination for the treatment of subcutaneous murine tumors. There, the vaccine was composed of poxviral vectors that express CEA and three T-cell costimulatory molecules: B7-1, ICAM-1, and LFA-3 (CEA/TRICOM). Although either modality alone was ineffective, the combination of radiation and vaccine was not only curative in 50% of mice bearing CEA-expressing tumors, but also imparted protection from subsequent tumor challenge.

Interestingly, mice cured of tumors demonstrated “antigen cascade”; that is, they developed CD4-positive and CD8-positive T-cell responses not only for CEA, but also for other tumor antigens not encoded in the vaccine, such as p53 and gp70. The immune response to gp70 was much greater than that seen to the vaccine-encoded CEA, suggesting that the immune response to the cascade antigen may play an important role in antitumor activity. This antigen cascade phenomenon has also been observed in patients enrolled in clinical trials (see below).

Bone-Seeking Radionuclide and Cancer Immunotherapy

In advanced stages, many primary human carcinomas such as thyroid, breast, kidney, prostate, and multiple myeloma typically involve painful bone metastases that require palliative therapy. Strontium-89 (89Sr, Metastron) and samarium-153 (153Sm lexidronam, Quadramet) are bone-seeking radiopharmaceuticals used to relieve the pain of metastasis to bone. The calculated dose of palliative radiation delivered to bone metastases by 153Sm lexidronam is between 18 and 80 Gy[31,32]—doses that have been associated with phenotypic modulation of human tumor cells.

In one study, 10 human tumor-cell lines representing classes of tumors that metastasize to bone (4 prostate, 2 breast, and 4 lung) were exposed to clinically relevant palliative levels of 153Sm lexidronam for 4 days, then examined by flow cytometry for modulation of several cell-surface molecules. Of the 10 cell lines, 100% upregulated Fas and CEA, 70% upregulated MUC-1, 40% upregulated MHC class I, and 30% upregulated ICAM-1. Upregulation of any of these surface molecules could potentially render tumor cells more susceptible to killing by CTLs.[33]

 

 

 

 

I'm me, not a statistic. Praying to not be one for years yet.

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JerryfromFauq's picture
Replies 3
Last reply 2/12/2014 - 12:14am
Replies by: JerryfromFauq, Anonymous, Yvonne.D

wow, There is NO "CANCER"!   What a statement to hear in a group of doctors!  Actually they say what I've been pushing for years  .................Define CANCER.................................. ...http://www.youtube.com/watch?v=RU1vyBGzbzA

Worth listening to!

I'm me, not a statistic. Praying to not be one for years yet.

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Michelem's picture
Replies 6
Last reply 2/11/2014 - 4:23pm
Replies by: Michelem, Maureen038

Today we learned that the melanoma has spread to Don's liver and bones - this just since his last PET scan in December.

he is also getting his first ipi infusion today. Doc says it can be 25% effective! even against such an aggressive spread.

plans for radiation have been cancelled. PD-1 trial is closed.  Our specialist has mentioned biochemotherapy, but is concerned because of Don's age - 72.

i feel we are getting good attention and care - but that there simply is no clear solution. Has anyone with liver and bone mets had good results with ipi? I am looking for a dose of hope.  mm

MicheleM

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Linny's picture
Replies 3
Last reply 2/11/2014 - 3:23pm
Replies by: Linny, KYDonna, POW

Scancell Gets US Orphan Drug Tag for Metastatic Melanoma

LONDON (Alliance News) - Scancell Holdings PLC said Tuesday its SCIB1 ImmunoBody metastatic melanoma treatment had been granted orphan drug designation by the US Food and Drug Administration.

This designation means that Scancell can qualify for a 50% tax credit for clinical trials of the treatment, a waiver of the prescription-drug user fee for the drug-approval procedure, and seven years of market exclusivity.

The orphan drug designation is designed for rare diseases that affect less than 200,000 people in the US, or treatments that are not expected to recover the costs of development and marketing the drug.

Shares in the biopharmaceutical company were trading up 5.5% at 37.17 pence Tuesday morning.

http://www.lse.co.uk/AllNews.asp?code=6ku2pksd&headline=Scancell_Gets_US_Orphan_Drug_Tag_For_Metastatic_Melanoma_Treatment

-----

What in the world is an SCIB1 ImmunoBody metastatic melanome treatment?

Stage III, Unknown Primary; 1 positive node in left axilla

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Tina D's picture
Replies 3
Last reply 2/11/2014 - 3:23pm
Replies by: Tina D, Erinmay22, Anonymous

So, it is a minor question... but have any of you on PD1 had itchy sloughing skin on eyelids? I will be back at the Dr in a week, and will show them - but was wondering if anyone else has experienced anything like this? Both lids were lightly peeling last visit to Dr, and it is assumed this is part of the immune response to treatment. This has increased some, and now lids are a little puffy, though still not a big deal. I am just wondering if anyone has had something similar, and if so... was it treated?

Thanks!

Tina

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gaby's picture
Replies 13
Last reply 2/11/2014 - 12:01pm

HI,

My husband (38 years) was diagnosed with melanoma (ankle) on june 2012 (Breslow 2.3 mm without ulceration, less than 1 mm2 mitosis), unfortunately the result of the sentinel node biopsy (groin) gave positive 1/4, so he had a  groin node dissection and lymph node biopsy in the stomach, all clean.

Since October 2012 he was pegylated interferon therapy (Sylatron / intron), and scan every 6 months. Until the last few tomography nodes were enlarged but the oncologist said it was nothing serious. Sometimes lymph grew smaller and others were a bit bigger.

Tomorrow we have an appointment with the oncologist. The wait is intrined, I'm living inertia

 

These last months had hopes that the melanoma was not as aggressive as it only had a positive lymph node micrometastasis and clean and all the rest. As you might already left the liver?

from diagnosis I'm living a nightmare

God please give my husband a chance

Gaby (from Argentina).

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KYDonna's picture
Replies 8
Last reply 2/11/2014 - 11:35am
Replies by: KYDonna, ecc26, kylez, POW

Hey, has anybody here had any issues with hyperglycemia as a result of dabrafenib (tafinlar)? Hubby's been having nausea/vomiting first thing in the morning which resolves after he eats. Curious if we should start monitoring his blood glucose.

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KYDonna's picture
Replies 0
 
 
I have a question for all you warriors and caregivers! I need help because I am not dealing well!
 
Darryel, my husband, was originally diagnosed Stage IV in 1/2012-mets to spine, liver, pelvis, lymph nodes. He started on Zelborad and had been doing pretty well on it. The oncologist did CT scans, first every three months, then every four months, but only of his abdomen. November 2013, one week after a clean CT scan, he had a seizure. MRI found brain mets. Now he is on Tafinlar, seems to be doing relatively well, aside from extreme fatigue and some morning nausea. 
 
I am totally stressing, maybe b/c I wonder why only abdominal scans were done. His onc, not a melonama specialist, has no plans on doing a CT scan anytime soon! Darryel is scheduled to have a follow-up MRI of his brain in March, which is great, but I am terrified of waiting so long to do a scan of his abdomen!! I asked yesterday if we could just do another scan at least at the 6-month mark (which would be May) but was told NO. 
 
Am I putting too much emphasis on the scans? And how in the world do we live any kind of normal life with the fear of all these unknowns??
 
Any advice would be greatly appreciated-thank you all for being here!

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kpcollins31's picture
Replies 5
Last reply 2/11/2014 - 9:57am

I wanted to say thanks for all the thoughts and prayers over the past week while I was going through my bowel resection. As my wife noted in another post, I came home from the hospital yesterday (2/9/2014)! It was really nice to sleep in my own bed... and also really nice not to have the daily 3am visit from the hospital lab vampires to draw more blood :). I feel really good too and am actually working from home today. I am going to put together another post later today to talk about the surgery itself just to shed light and take away fear for anyone else that mighht have to walk down that road in the future. 

Thanks again for all the support!

Kevin

 

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starletwoman2007's picture
Replies 9
Last reply 2/11/2014 - 9:06am

I have been to hospital this afternoon and have been told that i cannot have gamma knife radiation cos the brain mets i have are smaill in mass. Am i right in thinking this is better than having large ones or am i just in denial? 

thanks 

 

Sal

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MaryD's picture
Replies 3
Last reply 2/11/2014 - 3:57am
Replies by: JerryfromFauq, MaryD, kylez

I apologize if this had already been addressed but I haven't been logging in as much lately.  On the former MPIP platform, we used to be able to post our profiles and I wondered if they transferred over to this forum.  If so, not sure how to retrieve mine as I would like to update it.

Thanks for your feedback,

 

Mary

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