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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I know we all insist that your oncologist matters...and it does!!! A specialist in Melanoma stays up-to-date on all the newest information and medications, giving you a greater chance of good outcomes.

But do we focus as much on our surgeons?? All surgeons are NOT created equal. Here's a new study out thats a good guide on what you should look for and what you should ask before surgery to get a better outcome.

http://www.wsj.com/articles/a-new-factor-when-choosing-a-surgeon-1474301023

Always do your homework and keep fighting!

Lauren

WithinMySkin

www.Withinmyskin.com

 

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snow white's picture
Replies 3
Last reply 9/21/2016 - 7:14pm
Replies by: snow white, Polymath, MoiraM

Hello there,

I am new to this forum.  I myself am a Uterine cancer survivor, but I am not here to talk about myself.  My Dad is 72 years old (very healthy overall)  and was diagnosed with colon cancer last year, he had it removed and no more treatment was necessary.  In June 2016 he went in for follow up and they did a CT scan, the colon was fine but they found something on his Lung and possibly his spleen.  He had surgery to remove the spot on his lung last month and the pathology came back that it was Melanoma.  We were shocked.  Now after alot of tests etc.  we just found out that he now has metastis in his brain (12 spots) small intestine (1) spleen (more than 12) upper right thigh.  WHAT?????? SHOCK!!

So far from what I know (this only happened 2 days ago), he will be doing radiation on his brain  (the whole brain) at Hoag in Newport Beach, ca.  He is also going to be starting a trial at USC (don't know the name).  He is waiting for his BRAF? test to come back.

My Dad has NO symptoms what so ever.  I am so scared, this is all so confusing. They said if he didn't do any treatment that he would be dead in 4-6 months!!!!   Any and all input would be greatly appreciated.

 

Thank you!!!!!!

Jennifer

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Check this out:  www.shadeitgreen.org

 

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BrianP's picture
Replies 11
Last reply 9/26/2016 - 10:49pm

Tumeric comes up from time to time on here.  Thought this was a pretty interesting article.  Study results toward end of article.  Bottom line is supplements didn't show much benefit but adding tumeric spice to foods seems to have a positive impact.

http://mashable.com/2016/09/20/turmeric-experiment-superspice/#8OvNB89clmqW

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/24/2016 - 2:30am

Can anyone share with me your experiences with melanoma stage 0??
Prognosis, chances of it coming back, chances of it spreading, follow up, etc?

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Replies by: Buddy0513, Hukill, Maria C, Bubbles, Anonymous, debwray

Hi everyone,

I posted a few days ago about my mom having a horrible experience with the one hospital and how we were waiting for a second opinon. Today we went for that second opinion so I thought I would follow up with you all.

The melanoma specialist immediately stated he did not see the Keytruda being the best fit for her, especially since it is mucosal melanoma and melanoma is aggressive. (He was also shocked at our treatment in the other hospital). He gave us the options of Nivolaumab and Ipiimumab or Nivolaumab, Ipilmumab and Saragramostim (which is a trial). He did not state anything other than he wanted to start treatment right away since it has been almost 2 months since this diagnosis and she has not received care and is in a lot of pain due to the location of the large tumor.

Has anyone else had any experience with the combination of Nivolaumab and Ipilimumab? I am trying to do some research for her just to get an idea what to expect. As for the trial, I can't seem to find much on this Saragramostim either...(other than the very scary side effects that my mom doesn't feel 100% comfortable with!)

Overall, we had a better experience at this hospital, we were immediately given a social worker, friendly staff and the center was packed with patients (which I took as a good sign because the other hospital was relatively empty!)

 

Thanks again for all who read this...We are only beginning the journey and are absolutely terrified at this point, more than ever before, since we kept getting such negativity that the drugs wouldn't work etc..I'll keep everyone updated as I can!

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laulamb's picture
Replies 3
Last reply 9/21/2016 - 2:42pm
Replies by: laulamb, Gene_S, sleepyt23

Hello,  I had my 3rd infusion of ipi 3mg on 9/13.  I was looking at my bloodwork over the weekend and I noticed my LDH (Lactate Dehydrogenase) levels: 

8/2 = 163, 8/23 = 156 and 9/13 = 195

(range should be 92-192 U/L)

Is there concern for my LDH to rise to 195 before my 3rd infusion?  

Thanks in advance!!   

Laura

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Nanners10's picture
Replies 2
Last reply 9/19/2016 - 2:22pm

Hi all,

I haven't posted in a while (but I read and follow daily) but am here again seeking thoughts, comments and similar stories.

Brief history:

WLE 2002, progression to groin lymph nodes 2014. Started (Apr 2014) and completed ipi vs interferon trial Apr 2015 (including four maintenance doses), local progression (groin lymph  node) again in Nov 2015. Currently on interferon (no judgement please).

There have been two nodules in my lungs since the first CT scan I had when I recurred in 2014. These nodules started at 7 and 8 mm repectively.  One of them grew to 1.2 cm in Dec 2014. Went in for biopsy to find out that it had shrunk down to its previous size so biopsy was cancelled. Nodules remain relatively stable in size until August 2016. Only one increased in size again (same one) but to approx. 1.4. MRI done the following week and size is measured at 1.2 cm. My doc is now ordering a pet scan since he feels the position of these nodules and their size make them difficult to biopsy. I did have a pet scan in Feb 2016 that noted the nodule at 9mm but not increased FDG uptake. 

Onc says that the radiologist feels they are growing and maybe they had reacted to the ipi when I was first given it but now they are getting bigger (which I don't believe is necessarily true in general but true for the most recent scan). Onc says if pet scan is negative he will have to consult with a lung specialist to see about figuring out what they are and/or having them removed.

Has anyone experienced anything similar or have any thoughts on this? Another thing to add into the mix is that whenever my CT scan is around my menstrual cycle these nodules seem to be affected, crazy hormonal changes maybe?

Thanks in advance for your thoughts.

Nancy

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sleepyt23's picture
Replies 6
Last reply 9/22/2016 - 6:25pm
Replies by: slh4448, youngann, Aaron, MoiraM

Hi all,

 

I was supposed to have my second infusion of 10mg Yervoy this past Friday, but ended up having an infusion reaction about 9-minutes into the session. I started to feel very flushed and had a difficult time breathing. Oddly enough, I didn't have any reaction to the first infusion 3-weeks ago.

 

Nursing staff stopped the infusion, gave me benadryl, hydrocortisone, oxygen, zantac, and started a saline drip in lieu of the Yervoy.

 

I fell asleep in the chair for about 30-minutes and felt better, then left and went back to work. The on-call doc (mine was out of office) didn't really say anything but said I would be following up with my doc on what the next step would be. 

 

Has anyone had this happen before? 

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Joycem's picture
Replies 1
Last reply 9/19/2016 - 1:11pm
Replies by: Julie in SoCal

https://m.youtube.com/watch?feature=youtu.be&v=FZ5CkEajszU

Not new info to the experts on here, but was a nice clear introduction to the topic I thought. Australian Dr., but info is pretty general regardless of locale. 

 

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Beth606's picture
Replies 10
Last reply 9/20/2016 - 12:19pm

I'm looking for some reassurance or information. I had a thin melanoma removed from my left calf in March of this year. Stage 1a, 0.40, mitotic >1...all the things you want it to be other than Stage 0. Fast forward to the past month. I have had typical drainage from mild seasonal allergies, my ears have a lot of pressure, but then last week I noticed my lymph nodes under my chin are enlarged. i went to my GP who gave me an antibiotic in case it is a bacterial infection. I started the antibiotic on Friday, nodes still swollen. They are soft and movable.

It just so happens my regular 3 month follow up is in a few days, so hopefully I will get more info then. I'm just

I don't know if I'm totally overreacting? At my staging should I logically assume this is a viral or bacterial infection? I hope I'm just concerned for no reason.

 

    

Beth Johnson 

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Amanda's picture
Replies 3
Last reply 9/20/2016 - 5:20am
Replies by: Amanda, Bubbles, Jubes

So my boyfriend randy was on clinical trial of now approved keytruda for 3 1/2 years before having progression of two new tumors in his thighs. We signed consent and are doing scans and blood work tomorrow in anticipation for starting a new trial combining the keytruda with an agent called sd-101 by dynavex where the agent is injected directly into one tumor one a week for the first 3 weeks followed by the keytruda and injection together every 3 weeks. Hopefully the sd-101 will introduce more killer cells to attack the tumors. This is done at ucla by Dr. Ribas and I'll keep you all posted on results.

Anyone here had experience or heard of the dynavex sd-101 combined with keytruda?

Best wishes. Amanda.

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keepthefaith11's picture
Replies 11
Last reply 9/22/2016 - 1:35pm
Replies by: keepthefaith11, Lucky242, Anonymous, BrianP, jennunicorn

Hi everyone, well, things are not going too well here with my dad. He was doing fantastic and all ready to start Opdivo last Friday. But last Monday he ended up in the hospital with another seizure. He had not had one for over 2 months and things seemed really good. Brain scan showed stable and some regression of the tumors. Doctors where pleased with results from the radiation so far.

Then this. He's in the hospital and it's now been a week since the seizure and his speech is still really poor. He has a hard time using his right hand as well. I am so worried that he now has permanent damage from seizures. Can this happen?

Then he started developing a fever. Very mild and it comes and goes through the day. They did a chest x-ray, check his blood work, and took cultures. That has not come back with results yet but everything else was perfectly normal. Of course, now he has not been able to start treatment because of the fever. It just seems like things are not cooperating at all. What could this fever be from if it's not infection? I have read about tumor inducing fevers. But I don't think it is from them growing since they were not. I also read about something called neoplastic fevers. Do to necrosis. Anybody know anything about this?

I am extremely worried about his mental state after the seizure. After the last one in July he also had speech issues, but it did not last as long I think.

Thank you to anybody who can respond to this. I am extremely concerned!

Annie

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Anonymous's picture
Anonymous
Replies 7
Last reply 9/21/2016 - 4:10pm
Replies by: Mawmaw2017, jennunicorn, Anonymous, Ed Williams

I went in this past week because I had a mole that was bothering me. It has been itching for the past 2-3 months. At first just intermittently and then constantly. I had my husband look at it because I told him it felt larger. I can't see it as it is on the back of my neck. He said it looked inflamed around the base of the mole and looked like it was growing a blister on top but didn't look like it was filled with fluid. I went to my doctor and he told me I needed to see the dermatologist. The first available was a month and a half wait. The itching got to be really bad so I called and asked to be seen sooner. I went in on Wednesday last week. The dermatologist said the mole needed removed because it did not look right and that it did look like a blister on top but that it was firm. She used a punch to remove it and now I have 3 stitched where the mole used to be. They took pictures and measured it but didn't say anything to me other than to come get the stitches out in two weeks. How long does it take to get a biopsy back?  Is there anything other than melanoma that can cause itching in an existing mole. I am very nervous. If it is melanoma is itching considered an initial or later symptom ? Thanks in advance.

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Jubes's picture
Replies 3
Last reply 9/17/2016 - 8:10pm
Replies by: Bubbles, Jubes, jamieth29

Just asking for a friend who had a Mel removed a year ago and now has multiple brain and lung mets. He has had radiation and now having laser knife surgery  

he's in Vienna and I'm sure he must be getting the best advice but how long after the brain surgery can you start immunotherapy?

i am anxious that he should start asap

anne-Louise 

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