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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laulamb's picture
Replies 13
Last reply 7/15/2016 - 7:39am

Hello,

I do not qualify for a clinical trial Dr. John Kirkwood from Hillman Cancer Center is running because I am only Stage 3a ... I needed two lymph nodes positive for melanoma and I only had 1 positive.  I am also BRAF negative.  Hillman Cancer Center is saying the only option for me right now is Interferon.  They are saying my insurance company will not pay for adjuvant therapy in Stage 3.  I do not want to do interferon, nor does my local oncologist want to give it to me. 

My local onolcogist recommended I go to clinicaltrials.gov and find a clinical trial or call Cleveland Clinic to see if they have any options for me.  They are going to call their Merek and Bristol Myers reps to see if there is any way to get me the adjuvant therapy drugs.  I am beyond frustrated at this point.

My oncologist's did not even try to call my insurance company to see if anything would be covered ... is this normal? 

Does anyone have any suggestions? 

I did find two clinical trials.  But the one is located in RI and the other is being offered in MO, IA and GA.  I live in PA. 

Thanks in advance!

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/22/2016 - 11:58am
Replies by: Lee Parlier, laulamb, Anonymous

I recently completed surgery. 29 Male. Bilateral LND to level 2 lymph nodes and a quite large area taken off my back for a quite large tumor. Left side started as a SLND but it tested positive so they took the remaining out.

 

I was diagnosed at level 3, I assume 3c given the extent of my surgery and the way lymph nodes on my right side lit up on my PET scan results but I don't know the specifics.

It seems once I leave the hospital (I've been here for about a week as they take care of my skin graft and lymph drains) they want to put me on interferon.

 

I am struggling with the decision still. Part of the reason is that I live and work in a foreign country (home is America) so my family is not here and I am worried if I would be able to work. If I were to use the medicine, it seems like my only option would be to live with my parents again. Part of the reason is there seems to be a lot of divided opinions on interferon. Part of the reason is that I am nutrition and exercise nut and feel I could make sure I am eating the right foods and getting a balance of healthy exercise while staying positive (if I were to go with wait and watch option)

 

If you've read this far, thank you. What I'd like to know is anyone's opinion on interferon, specifically with regards to stage 3 patients. I also saw the 2/2016 study that said interferon showed no effectiveness, but I believe the patients had a much less complicated lymph node situation.

 

cheat sheet: looking for any opinions or advice on interferon, questions to ask doctors (scientific or personal), personal experiences, when/why would you / wouldn't use it.

 

Thank you and I hope everyone is finding the strength to remain positive and live without fear : )

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tkrepr's picture
Replies 1
Last reply 7/12/2016 - 1:02pm
Replies by: dvd

My brother-in-law is currently undergoing treatment for stage IV melanoma under the Opdivo/Yervoy regimen.  After his 3rd treatment, he began to develop severe side effects (severe fatigue, shortness of breath, severe insomnia).  His liver enzymes have elevated to ALT/GPT=1246 and AST/GOT=670.  He has had severe insomnia for over one week accompanied by hallucinations at night.  His doctor has stated that his ability to take steroids is limited due to complications from diabetes.  Due to a severe lack of sleep, he is at the end of his rope mentally and physically.  Sleep aids such as Ativan and Ambien have not helped. The doctors are discussing possibly putting him in a medically induced coma to allow him to rest.  He is completely miserable.  We are desperate for any suggestions that may help with these side effects.  Here are my questions:

1)  Have any of you experienced liver enzymes elevated to this extreme?  If so, did they improve?  Was there permanent liver damage?

2)  Does anyone have any suggestions to address the insomnia?

His melanoma, which had exploded prior to treatment has completely disappeared, so his big hurdle at this point is trying to get through these side effects.  Any advice would be greatly appreciated.

Terry R. 

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jamieth29's picture
Replies 19
Last reply 7/15/2016 - 6:30pm

Just wanted to say hi to everyone I've been keeping up on board. I hope everyone is doing well or on the way to doing well. Last I was on it think I told everyone of the three brain mets that developed.After srs and 1 dose of ipi/nivo i started to get light headed and new something was going on. 1 of the Mets that was treated hemorrhaged and was causing problems the other 2 shrunk from 6mm to 2mm. I also had 1 new one develop that was 7 mm. So 2 days after ipi/nivon infusion doctors decided to stop immunotherapy and go back to braf because I had such a big response to it prior. After 8 weeks mri showed original 2 and new brain met were not visible on mri. The hemorrhaged met shrunk also and showed no edema. However after about 3 weeks on braf I developed every side effect in book,chills,fever of 104+ loss of appetite change of the way food tasted etc. My local doc thought we should keep on drugs and thus is partly my fault because I knew better but I ended up in hospital for 2 days with low sodium among way walked liver function. I stopped drugs and immediately things returned to normal. Tried to restart after 8 day layoff and same result. So I then took 2 weeks off to gain some wait...Lost about 13# and reduced dose. Made it 2 weeks with no issues then chills and fever. I immediately stopped for 8 days and trying again starting this past Sunday. Had another mri at u of chicago and they think hemorrhaged met in brain may have burst from response to srs. So it's been a long 2 or 3 months of feeling like crap. Feel great right now and just going one appointment to next, body continues to be clear. Thanks for all info everyone has been posting and support we all give each other.

Jamie

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jvictoria's picture
Replies 10
Last reply 7/14/2016 - 11:16am

So, I have gotten conflicting advice on getting flu shots and having Melanoma. Some have said "don't worry about it" and then some have said "don't do it because it might compromise your immune system"

Has anyone gotten any advice on this topic or seen any research?

I'm only asking because I was planning on volunteering at my hospital's infusion center and the hospital requires flu shots for all volunteers.

 

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Nicky's picture
Replies 6
Last reply 7/12/2016 - 6:59am

Hi everyone.

I'm just checking in and I'm not sure if anyone still remembers me.  I joined over 13 1/2 years ago.  

I am pleased to let you all know I am still NED after 16 years.  You can read my story under "Nicky".   No sign of any melanoma.  I have had 3 melanomas of varying depth.  One spread to my lymph nodes.  My treatment was surgery and radiation therapy.  

Reducing stress has helped me along my journey and keeping positive.

I am sending my support to anyone battling this disease and wish you all the best.

 

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Jennab0525's picture
Replies 6
Last reply 7/11/2016 - 8:02pm

Has anyone experienced right stomach/side pain? Trying not to panic but I've had this pain for awhile now (about 6 weeks) and there seems to be no cause to it? I had my CT scan on June 17 and it was all clear. I mentioned the pain to my oncologist and he felt it was possibly muscular given my scan was perfectly clear but he said if the pain persists he would order an MRI of my liver and gallbladder. The pain is definitely not severe or dibilitating just more sore/dull ache. Kind of like if you did a ton of sit ups but it's off to the right side. Sometimes below my ribs and sometimes down towards my tummy. 

We bought a new house recently and have been doing a lot of work (yard work, painting, etc) so I guess it could be muscular but to last this long? What are everyone's thoughts? Anyone else experienced this? Should I be concerned given the fact my scan was clear?

Jenna

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NancyGM's picture
Replies 4
Last reply 7/14/2016 - 11:41pm
Replies by: NancyGM, Swanee, gigembritt

Has anyone experienced tender nodes (rather than hard, painless nodes) turn out to be mets? I have no infections currently and blood work a couple months ago was good. I have been NED for 8 years, but still worry with symptoms that last....My heart goes out to all dealing with melanoma...

NancyGM

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Ajwells's picture
Replies 6
Last reply 7/11/2016 - 2:56am
Replies by: MoiraM, Ajwells, jennunicorn

I am post op neck dissection 3 weeks tomorrow. I've always had a little bit of some body temp weirdness. I'm naturally warm blooded. I pretty much radiate heat. But since surgery, it has been terrible. I'm either sweating or I'm frozen. I wake up drenched in a cold sweat multiple times a night. It's disgusting. I feel like I always smell. In the morning it feels like I have the chills, but I don't have a fever. I feel like maybe some of this is normal since my system is probably in a bit of shock with all of those lymph nodes removed. But of course my mind goes directly to adrenal metistasis or something. It's been 6 weeks since my pet scan. Which was clear. So this is just post op things. But how do I get the fear out?!  I don't even know when my next scan is. I meet with my medical oncologist on Thursday for the first time. I will mention it to her I suppose. 

I just had to get my irrational fear out there. Melanoma and anxiety with catastrophic thoughts don't mix. More Benzos please! 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/12/2016 - 11:32am

I have been searching the Internet to find some answers but I leave more and more confused.  My question is about flat moles. Some sites say these are abnormal moles but when I go to my dermatologist he says everything looks fine.   All of my moles are completely flat moles that do not raise above skin.  I had one removed last year and it was mildy atypical.  Should I also be concerned that I have 2 flat moles on my buttocks or can nornal moles develop on areas that don't see the sun? Thank you 

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sallyandree's picture
Replies 11
Last reply 7/11/2016 - 2:03pm
Replies by: sallyandree, Patina, Ed Williams, Bubbles, MoiraM, Anonymous

My significant other has Stage VI melanoma and has been on an Odivo and Yervoy regimen since the beginning of April (4 treatments, given every 3 weeks).  I cannot recall what the dosage is that he has been on, but his doctor said that he has been taking the maximum amounts.  He has reached the end of the regimen, and we are taking him in for a PET scan on Monday to see if it has been working.  On Wednesday he will be starting a regimen of Opdivo every two weeks (a total of five treatments).  Has anyone else been through this regimen?  I am hopeful that the side effects from just taking the Opdivo with no Yervoy will be less hard on him than the combination of the two.  The melanoma has traveled from the original site (his back) to his stomach, and it is difficult for him to eat much, let alone that the medicine has him throwing up daily. 

Thank you, Sally

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gigembritt's picture
Replies 4
Last reply 7/9/2016 - 10:24pm
Replies by: gigembritt, Janner

Anyone who has dealt with MD Anderson.... I haven't even had my first apt and I'm already getting apt info from the lymphoma center too?? Is this standard? I haven't even gotten blood work done. Just one little shave biopsy.  Would this be in regards to SNB if they decide to do one?  Just seems odd to scare me like that! 

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Replies by: MoiraM

Hello,

I am wondering if anyone has any knowledge or experience with  immunosuppressant drug treatment. I have had dozens of moles removed, they were all dysplastic. My melanoma was diagnosed as 2A, ulcerated and a high miotic rate. I have been NED for 7 years and while I don't stress over re-occurrance I do worry about the risks of  immunosuppressant drug treatment.

 I have had chronic idiopathic urticaria ( daily hives) and angio-edema ( subcutaneous tissue swelling) since 1983. Angioedema causes large, disfiguring facial swelling, the hives are hot, itchy and some are painful. I have head two long remissions, first 15 years, then 12 years. My last flare was 3 1/2 years, the current one 2 years. Antihistamine treatments have failed as well as prednisone, and just recently a prescription drug named Xolair, a protein that resembles one type of human antibodyI am afraid to take  immunosuppressant drugs because of the risk of the malignancy they all carry.

I'd appreciate any help anyone here might offer from experience or knowledge, thanks!

 

susanspotless

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lscarr's picture
Replies 4
Last reply 7/14/2016 - 5:19pm
Replies by: Landlover, Anonymous, Bubbles, MoiraM

Hi All, this is my first post, I'm 3b. I joined the party on 4/28/2016, primary mole on temple came back pos for S100 (1.4mm, no ulceration); 5/19/2016 OR SLNB one pos, one neg (both nodes were in the parotid gland, whose tissue was negative) and WLE (negative); 6/21/2016 paritodectomy (1 node pos, 2 nodes neg, gland tissue still negative) + level 1 and 2 LN neck dissection (all 16 nodes negative).  PET and brain MRI clear so far. 

Need to decide on whether to just start ipi on 7/18/16 or to enroll in S1404 which gives me a random possibility of ending up with pembro.  S1404 will also provide PD-L1 testing.  Again because it's random, I won't know until I enroll whether I'll get the pembro.

Questions for the group:

1) Is anyone out there in this study and if so, which arm?

2) in general does anyone have firsthand comparison between ipi and pembro side effects?  I know it's different for everyone.

Thanks all for your inspiration and communication.

susan

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