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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Spl25's picture
Replies 4
Last reply 9/23/2016 - 11:57am

I'm a male, 30 yo. Diagnosed in July-  stage 4 w multiple mets to bone, liver lungs and spleen. largest tumors are 2-3cm. I've been on pembro since august 4, and have my first ct/MRI coming up. If it shows progression of disease, is the next logical step ipi/nivo? Fairly certain I'm braf mutated. If I'd like to explore clinical trials/travel to MD Andersen etc, should I pause treatment to do so? Or jump right into whatever my doc here (a Midwest NCI research Hospital) recommends? Perhaps they have their reasons for doing so, but my doctor has been pretty opaque about what they will do next. 

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BrianP's picture
Replies 2
Last reply 9/22/2016 - 11:47pm
Replies by: debwray

Research at MD Anderson trying to discover why immunotherapy doesn't work in some patients.

 

http://medicalxpress.com/news/2016-09-melanoma-tumors-interferon-gamma-m...

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Lizz's picture
Replies 5
Last reply 9/22/2016 - 10:35pm

Hi I was diagnosed with melanoma three weeks ago.  Its all very scary and everything feels so uncertain.  I just want to make sure Im doing everything I should be.  I had an appointment yesterday with a surgeon who said at the moment I was at a stage 2b.  He spoke about a sentinel lymph node biospy giving me the impression that this was not the best route to take and I should just "sit and wait" and see how things go.  I really dont want to just do nothing and wait for the melanoma to spread!.  I decided to go for the sentinel lymph node biospy regardless.  I am hoping to have an appointment within the next two weeks.  The brislow on my nodular melanoma was 5.5 (on my arm), I get the impression that because it is so large that it is likely that the melanoma has spread?  Anyone else had a sentinel?  If it has spread to lymph glands does that mean it has probably gone elsewhere as well.  Sorry for all the questions but  im new to all this. 

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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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Anonymous's picture
Anonymous
Replies 2
Last reply 9/22/2016 - 1:44pm
Replies by: itsme.mimi, Mat

I had a stage I melanoma in 2006, had WLE, never a problem since. I do not think of melanoma much anymore, so it did not even occur to me until today to look up possible melanoma symptoms, for the constant itch i have with a flesh colored looking mole on my leg. It has been itching on and off for weeks now, but last couple days, it has been worse than before. When I went to take a look at it tonight, I noticed another pinkish, circular lesion, about 2 inches up my shin from the itchy one. Is there any possiblity that they could be intans-it mets? Would they itch? My original melanoma was same side, on bottom of my foot. 

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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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Aaron's picture
Replies 4
Last reply 9/22/2016 - 11:35am
Replies by: KAF, WithinMySkin, Anonymous, Polymath

So I met with my dr's nurse practitioner and am now in the process of weaning off of prednisone and getting revved up to resume nivo treatment after my pituitary issues.  I wanted to get more details about my shrinkage and told her I never got my email giving me all of my results. She read most of my results and all of my tumors have shrunk by 1/2 roughly. There is one tumors though that was never mentioned and has never been mentioned before that has grown. I would not have known about this tumor if I had not read my exam results in my email. I have an enlargement of the porta carval lymph nodes that is over 2 cm in size that the  results state concerning for metastasis. I am keeping faith that I was not told about this for a reason as it is undetermined or maybe some underlying factors I do not know about. Just a little bummed that I was all go and realize that there are still many obstacles in the way on this bumpy road. Part of me just had the inclination that I'll take the meds, get better, and move on and I still have that basic belief. Just worn down a little. 

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/22/2016 - 10:13am
Replies by: Anonymous, debwray

Had surgery in July now and biopsy was good. Now I've developed fluid around my lung my leg continues to swell. I'm not sure if this is related to melanoma but X-ray showed normal heart and lungs. No lung disorders. Waiting on results of CT Scan just wondering if anyone else had a similar experience. 

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JoshF's picture
Replies 19
Last reply 9/21/2016 - 9:57pm

At airport waiting for flight to Houston, which of course is delayed. The blood test showed liver enzymes dropped significantly. That was great news...thank God. Bad news is I went in patient portal and read radiologist report from scan last week. Overall impression with out getting into details was "worsening metastatic disease". That hurt because with the 3rd and last ipi dose being 8/8, I have to assume I didn't respond 2nd time around after having great response in 2013/2014. I feel like though we tried hard in past couple months...nothing has stopped this dreaded crap and therefore nothing got done.

So I do Ct scan tonight at MDA, see Doc Friday, Brain MRI Sunday and then get moving into treatment phase next week.

Not that anyone has crystal ball but what are chances something shows up in brain a month after gamma knife? I've bothered Kyle with private messages for the past week with this stuff...symptoms to look for etc...Either way they will need to ask for PI override. I need the cells and see if I can start beating this back. I know others have been in far worse places but it feels like I'm trending there. Believe me I want to fight but I need the treatment to fight with me. Yes I'm starting to feel desperate. Anxious to get to Houston and get show on road. Not sure if I'll be posting, I'm tired of all the sadness and suffering I read here but know that I think of and pray daily for all of you. Much love, support and healing to my MPIP Family!

Be well!!

Josh

Let's work for better treatments....for a cure!!!!

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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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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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stotes's picture
Replies 4
Last reply 9/21/2016 - 3:34pm

I have Stage lV metastatic melanoma with latest scan showing one subcutaneous nodule and another tumor on my right glut max muscle.  Is it a bad idea to wait seven weeks to get into a trial for Opdivo plus epacadostat (IDO inhibitor)?  Or should I just start Opdivo alone?  I progressed from stage lll to lV while on Ipi and have to wait seven more weeks for it to be out of my system.  The trial is not randomized so I know that I will get the drugs.  I didn't choose watch and wait after surgery and radiation for stage lllC and now I regret it.  I feel like no matter what I do it ends up being the "wrong" choice and now I'm running out of choices.....  Christal 

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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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LEEPOINTON's picture
Replies 3
Last reply 9/21/2016 - 11:46am
Replies by: ian0502, SarahS, Fen

I was diagnosed last year with Melanoma on my back. I had a wide local excision and all was fine. I went for check ups every 3 months. On the day of my 12th month check my consultant discovered a lump under my left arm. After a biopsy, yes it was back. I was diagnosed with metastatic malignant melanoma stage 3b. I had a full lymph nose disection 8 weeks ago and am now suffering with lymphodeama. I have read numerous sites, mostly giving bad vibes and bad prognosis of suffers of this type of cancer. I was wondering if there is actually any good news stories from people that have had this and years down the line have seen no reacurrance. I am only 40 years old and feel that already i am a sitting duck waiting for it to come back and there be nothing more to be done. Please please any positive stories or help would be much appreciated.

Regards Lee (stoke on trent, United Kingdom)

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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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