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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Anonymous's picture
Replies 15
Last reply 3/20/2015 - 9:52am

So I was supposed to fly to Oahu tomorrow to see my medical oncologist.  Last visit 1 year ago had a discussion regarding my concerns about my cumulative radiation exposure (at least 9 PET/CT, 5 or more chest CTs, multiple chest x-rays - lost count etc.).  At what point do we drop scans?

In my case I had indolent disease.  8 years after stage IIA became stage IV with a small lung met and even smaller muscle met.  Removed lung tumor and underwent IL-2.  Complete responder with a durable remission.......  Based on recent follow ups of past IL-2 complete responders both my surgical & medical onc. have finally accepted I will probably continue with my durable remission.

Only now what to do.....

I called yesterday and since no scans were ordered asked what was the point of taking an entire day, flying to Oahu, spending over $300 on airfare, another $100 or so to catch a cab, to basically say I am still doing well.....  

I just had several blood tests & chest x-ray as part of my pre-op stuff for ACL surgery, all good.

With my Dr.'s blessing, he agreed I could be followed by my surgical oncologist who flies to the Big Island 2-4 times a year to see patients.  My surgical oncologist said I should still be seen by someone, but as to what testing, lab work and for how long, neither of them had an answer.  They are going to talk to each other about it.

The funny part is both feel I will never hear from mel again, but neither wants to discharge me forever - LOL.  I am at peace not doing any more scans at this point.  Perhaps it is worth it just to give those guys hope that some of us set the curve rather than live by it......

It feels good to have graduated from seeing them.  I think now it will only be annual visits +/- blood work with my surgical onc.  I can stay at home to get that done which also helps a great deal.

Just updating for whoever was interested.  Glad the day finally came :)

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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bonusfries's picture
Replies 5
Last reply 3/20/2015 - 7:04am

My initial diagnosis was July '13. Had a very high risk initial tumor (11mm depth, and raised from the skin too). Fortunately the WLE, SLNB and every PET scan (last one Sep 14) since then has been NED.

That was until vision problems led to an MRI 3 weeks ago. 2 brain mets, different lobes, with the visual problems being driven by one of them filling with fluid. The larger had swelled to about ping pong ball size, with the second being 1 cm. Minus the fluid they were both probably equal in size.

The subocciptal craniotomy went extremely well. Surgery on Tuesday and I'm back home Friday night at a pizza party for my son. A full body CT scan (CT only not PET) only showed that a subcutaneous node might be forming near my original site (lower abdomen), otherwise NED.

The next Friday after discharge, I had SRT performed on the second area - front right lobe. I am a math / science guy and was completely fascinated by this procedure and enjoyed every minute of it.

My lab results from the removed brain met came back BRAF positive. Our plan of attack is to start on the BRAF + MEK combo in the next 2 weeks.

So aside from the initial bad news in the ER that my melanoma had spread, this just seems like wave after wave of good news in terms of attacking it in the short term with quite effective methods. Long term who knows, and I'm a "glass half full" kind of guy so I'm not even contemplating my future. I feel like I have as good odds as I'm going to get in terms of beating it back right now, and hopefully keeping it back. I hope everyone dealing with this has the same encouraging news if you ever hit stage 4 also.

 

Stay strong

Jeff

 

Just do it

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/20/2015 - 6:58am
Replies by: bonusfries, Anonymous

...whoever you are posing as this time:

Get the hell out off this board. Everyone here is dealing with a very serious illness and is not interested in any crap that you happen to be peddling.

Stage III, Unknown Primary; 1 positive node in left axilla; currently participating in GSK DERMA (MAGE A3 vaccine) trial

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Shelby - MRF's picture
Replies 7
Last reply 3/19/2015 - 11:22pm

Dear MPIP Community:

The MRF is working to have a bigger and more impactful presence in the mucosal melanoma space and we want to hear from patients who have been impacted by this rare form of melanoma. Please help us by taking this 9 question survey. Your feedback will help guide our decisions on future advocacy and education efforts.

The survey can be found HERE. Thank you in advance for your help! Please feel free to share this survey with other people impacted by mucosal melanoma - we truly appreciate it!

Sincerely,

Shelby - MRF 

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Happy_girl's picture
Replies 3
Last reply 3/19/2015 - 9:40pm

Hi everyone! I have a random question. That no one may know the answer to:

when washing my hair- I found a small bump on my scalp.  After checking my dear friend google-it seems to be where there are occipital lymph nodes.  My original melanoma was on my back and drained to the lymph basin under my left arm.  There were micromets in my sln.  All other nodes removed were clear.   Is it likely to have traveled to the occipital lymph nodes on the back of my head, or Am I just panicking because that's what I do best?

I know anything is possible with melanoma- but I'm just looking for some any possible related experience.  Thanks! Hope everyone hAd a wonderful st Patrick's day!

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katie1's picture
Replies 1
Last reply 3/19/2015 - 8:25pm
Replies by: Anonymous

My husband (IIIC-11 mm amelanotic nodular melanoma) is participating in the Ipi vs Interferon adjuvant trial.  He received all the induction infusions (3mg arm) but did not receive any maitenance doses due to toxic side effects (grade 4 hypophysitis).  He had many side effects from the Ipilimumab (dermatologic, ocular, neurologic, gastro-intestinal and endocrine). All have mostly resolved except that he has permanent adrenal insufficiency.  He remains NED.  Hoping this might give hope to those who may have started the trial more recently.

Kate

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Annesmith's picture
Replies 5
Last reply 3/19/2015 - 8:04pm

I've got 2 small lumps on my finger. I suspect them to be ganglion cysts. They are small, painless, flesh colored. My primary was almost 10 years ago (leg 1B).  I think it is highly unlikely that it is melanoma but it's in the back of my mind.  Melanoma would be blackened/ opened (etc.)... yes? This looks completely benign.  I have an annual appointment with my derm, but not until June.  Wondering if I should see him earlier?  Thanks for your thoughts all!

Anne Smith

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Last week I mentioned when I saw them to both my med and radiation docs my left foot hurts. When I touch it it is kind of like touching a nerve instead of my foot. Especially my 3 smallest toes and a few places on top and the left side of my foot. Well the med doc was actually his assistant and he didn't say anything about it. My radiation doc's nurse just said that was new. So nether are planning to help so i figured it might heal itself like other stuff has but this has been going on for at least 10 days.

I think it must have started when I was on the fentanyl pain patch and when I came off them I could feel it. So I'm not exactly sure when it started. During that time they had me on 3 types of pain meds at the same time because of the syatic nerve painin my left hip and leg. There was fentanyl patch, morphine and some pill for nerve pain oh and some oxycodone I already had. Once I found a specific cushion provided lots of pain relief I got off everything except the fentanyl. I was on the nerve pain about 5 days. The morphine 2 days. The oxy I had been on a couple months. I was on the fentanyl patch a couple months and quit it ten days ago. They were also radiating the t4 and 5 vertebrae for that nerve. Plus the right femur for painin that hip. Plus the initial spot of the left shoulder and neck. So now I'm just on Keytruda month 10 and xgeva month 13.

Ive tried increasing my walking to 6 ten minute walks a day. Not easy with my left hip pain. But walking is supposed to help nerves. I put the heating pad on it but doesn't reall help. I can't really reach it with my back and shoulder issues so I can't massage it or soak it or apply lotions to it like I would want to. I hate asking my parents cause they do enough taking care of me unless I knew of something that would work good so not to waste their effort. I took Tylenol but that really didn't help either. I haven't tried ibuprofen yet.

Any ideas what I can do to relieve this pain and maybe heal the nerves?

Artie

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acyr's picture
Replies 2
Last reply 3/19/2015 - 12:55pm

Hello all,

The Melanoma Network of Canada (MNC) is urgently seeking patient input into a survey regarding the latest Anti-PD1 therapies and patient experiences. Patients from the US and Canada are encouraged to participate and particularly patients treated with either Nivolumab (MDX 1106) or Pembrolizumab (MK 3475). Please click on the link below to access our survey. 

The survey information will be used to help support patient the case coverage of these therapies so patients do not have to pay out of pocket in Canada.  Because of the small number of patients in Canada that were enrolled in the clinical trials, we are also asking patients in the US if they will lend a hand to share their experience with either drug by answering a few simple questions. Deadline for response in April 15th. MNC thanks you for you help in supporting access for all patients with this dreadful disease. Any inquiries may be directed to us at 1-877-560-8035

https://www.surveymonkey.com/s/Pebmro-Nivo_survey

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Eileensulliv's picture
Replies 3
Last reply 3/19/2015 - 11:36am

I had my first dose of ipi and Nivo at the end of February. I was supposed to have my second treatment this Thursday, but my thyroid levels are not normal, so I cannot get my treatment. This Saturday I'll go for another thyroid blood test and Monday morning my doctor will call with the results, and whether or not I can have my treatment next Thursday. 

In the time from my first treatment, I have experienced fevers (highest was 102.5), fatigue, vomiting, loss of appetite, sweats and chills, racing heart, shaky hands, shortness of breath, and rash and itching. I started to feel MUCH better Sunday and Monday, but today I don't feel as good. My doc put me on a beta blocker to help regulate my thyroid. My T3 and T4 levels are quite high, and my TSH is very low. 

Has anybody else had thyroid issues while on ipi/Nivo? If so, what worked for you? I've been researching foods that will help, but just wondering if anybody has some advice. Thank you very much!

Eileen 

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Anonymous's picture
Replies 2
Last reply 3/19/2015 - 11:20am
Replies by: Anonymous

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Thank you for taking the time to read this, I am having a real difficult time right now and am hopeing someone has some experience they can share with me on this topic.  I feel weird saying that because I find it uncomfortable wanting someone to have the same experience since I would never want my worst ememy to go through this, but I hope you guys will understand where my heart is coming from. My dad was diagnosed in December with Stage 4 Melanoma with mets to the brain (18 tumors) and lung (1 large tumor). He is 64 years old. He had Neurosurgery where they removed 14 out of the 18 tumors, the other 4 are too close to the brain stem to operate on. He had 15 whole brain radiations done. His biggest complaint is being fatiged, food not tasting good, and lack of sleep. He has been on Decadron and MD's have attempted to slowly wean him off of it. Every time he is off the steroids, his balance is effected (he has fallen) he becomes forgetful and has severe neurologic changes, requiring he goes back on the steroid, to give him the best quality of life. Has anyone had this experience? I know its bad for people to stay on the steroids long term, risk for infection etc. Will he be able to wean off successfully at some point? I imagine he still has substantial brain swelling (neurosurgery done on Feb 7th) if this powerful steroid (8mg) daily is being required. He is also on Yervoy recieved 2/4 treatments with no adverse effects. Thank you. 

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mrsaxde's picture
Replies 5
Last reply 3/18/2015 - 9:26pm
Replies by: mrsaxde, Anonymous, Mat

I finished the treatment course with Yervoy in January. Went back for a post treatment scan a week ago, and the results are encouraging. Several questionable areas, including one on a lung, that were new in November, but weren't "hot" on the PET scan, are unchanged, and still not hot. I do have one area that was mildly hot ("warm" my oncologist called it) with an SUV of 3.03, on my back.

Throughout the treatment I've been dealing with the typical rash, and I've been on prednisone for over two months now. But, all through the time between the infusions, the rash was the only issue.

About a week after the last infusion, a pain developed between the bottom of my ribcage, and my navel. My doctor thgought it was due to the prednisone, and advised me to take Maalox. That seemed to help for a while, but soon it got worse, and became more widespread throughout my abdomen. Maalox no longer provided any relief.

For about a week now, I have been unable to eat much of anything. Almost everything I eat gives me pain, gas, diarrhea, and bloating. I was told to take Immodium for the diarrhea, and to help the pain. It helps, but not completely. It was also recommended that I try the BRAT diet (bananas, rice, applesauce, toast), but not even those are very tolerable, unless taken in very small amounts.

After that long introduction, my questions:

I'm wondering if anyone else who has been given Yervoy has experienced a worsening of side effects after the treatments ended, and if so, how long did it last before they began to subside? Also, does anyone have any recommendations about things I could try to eat? I've lost 10 pounds in just over a week.

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eric w's picture
Replies 4
Last reply 3/18/2015 - 3:22pm

Hi all,

 

My wife has had #14 doses of Mk-3475 and developed pneumontis. She just finished a two week course of prednisone and will get repeat CT of the chest area in a few weeks. Curious other folks experiences with pd-1 and pneumontis and associated responses. Thanks

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