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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JaneD's picture
Replies 4
Last reply 5/23/2017 - 11:44am

Hey Everyone,

First, thanks to everyone who posts here.  It is so comforting to read everyone's experiences and has kept me sane for the first part of my treatment.  I had melanoma I guess 20 years ago.  Thats what the first pathologist siad.  After removing a large section of my leg the second pathologist said no it was spitz nevus.  The surgeon said sorry and I jumped for joy and never thought about it again.  20 years later my inguinal lymph node got big and hard fast.  Long story short I find out I have stage 4 melanoma with a few other smallish tumors throughout my body-crazy cause I felt normal.  Lucky to have started on ipi/nivo as soon as possible.  Combined with a special diet and a bunch of probiotics which are emerging as somehing that really helps the immunotherapy work better (I would be happy to share if anyone is interested). 

Just had my second infusion last week and ever since I have been struggling with a constant cycle of nausea, chills and fever that reaches 103F.  Tylenol gives me a few hours of relief but I am really struggling-messaged my doctor today-but it's saturday so I don't expect much until monday.  Just by reading these  message boards I know these flu like symptoms has happened with others too.  How long do I suffer through this and how do people feel when taking steriods?

I am feeling horrible but I am happy to feel this way beacuse I know my immune system is taking care of buisness. The lymph node in my leg was originally 2cm and it doubled in size and was super painful after the first infusion.  It then got much smaller and softer measureing under 2cm.  It has just gotten a little bigger and painful again as well as another lymph node in my neck.  At  first I was worried my cancer was growing like crazy but logically the growth and pain is more more likely immune cells getting into my tumor and killing the cancer cells.  When I get a fever I know my immune system just can't stop itself-the brakes are gone and the cancer cells are now a foreigner.  So I am keeping positive.

 

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baesill's picture
Replies 4
Last reply 5/23/2017 - 11:40am

1) Did you get tested for ldh levels before treatment? I consulted with some oncologists who cared about testing ldh, and others who didn't. 

2) For the ipi+nivo treatment, did you get a 6 week scan? Again i know some oncologists who do and some who do not. 

Does anyone have any insights the reasoning? 

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VIve's picture
Replies 5
Last reply 5/23/2017 - 9:59am
Replies by: Patrisa, VIve, messedmelanocytes, Anonymous

Probably everybody in my situation is wondering how did I get there. Metastatic melanoma cancer stage IV..Last year I barely had a flue and now I'm diagnosed with a termal illness where apparently is not much possible to do to save my life.

I had some small moles removed more than a year and a half ago but no problems afterwards. That's why I'm asking myself what could be the reason for the cancer to appear or develop at the beginning of this year? Last autumn I had a flue vaccination afterwards I felt somewhat sick. Before getting really ill I was going a little too much for me to the gym and therefor was taking lots of aspirin. But really otherwise nothing serious. Also other questions are bothering me like why aren't there preventive blood checks? And how is it possible from totally healthy (just with anemia) to be told one day when you don't feel well that there is nothing else to do before foing anything at all?! 

I thought the medicine is already advanced after decades of trials, money raised for research etc. And if there is an immunotherapy that is working why it has to cost 100 000 $ or anything like this - it should be affordable for everyone in the world...

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UBContributor's picture
Replies 8
Last reply 5/23/2017 - 9:39am

Forum folks! This is my first summer with MM, live in desert like, extremely sunny place, and seeking your advice how do you avoid sun? I realise no more beach or summer hiking for me in my life, I used to love doing this.  But what about driving? walking in the city to and from my work? Have thrown away all my shorts, now wear only long pants and shirts with long sleeves, it this enough? I read on a different site one guy complaining he wore always hoodies even  in hot summer, but it still came back very soon, scaryng .... so, how extreme the sun avoidance should be? 

George, 27 yo, stage I B, Nov 2016 

 

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Anonymous's picture
Anonymous
Replies 8
Last reply 5/23/2017 - 9:24am
Replies by: AliCat61, raun cesar, SABKLYN, Anonymous

Stage 4 patient here. Each of my 3 radiology reports at current treatment center have described "nonspecific bilateral punctate nodules" in the lungs on CT, but these are not measured like the nodules in other organs. They are "stable" in the latter 2 reports. Has anyone had similar nodules? Did they resolve along with other tumors? What is the likelihood that these are tumors at all? Is there any way to figure out if they are cancerous?

What is the significance of the adjective "punctate"?

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MovingOn's picture
Replies 3
Last reply 5/23/2017 - 3:06am

I am facing the situation where my side effects from Ipi/Yervoy are being suppressed by prednisone. My side effects are hypophysitis and sinusitis. Will the prednisone return my immune system back to a pre-Ipi state or has my immune system been changed permanently? I hope that I benefit from the Ipi infusions but I also don't want my pituitary to swell again once the prednisone is tapered.

Can anyone share insights on the permanent immune system changes from Ipi? Or if prednisone will permanently direct my immune system back to not attacking my pituitary and sinuses?

(there may be other side effects I'm experiencing which have not been diagnosed, e.g. Mild Neuralgia. Hopefully these won't come back/progress when prednisone tapers.

Thank you!

Danny

Diagnosed Jan 2017 (unknown primary). Surgery Feb 2017 (Speech impediment resulted from ad-hoc submandibular gland removal during CLND). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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jenny22's picture
Replies 9
Last reply 5/22/2017 - 11:34pm

Hi-

I have been hoping we might hear from jamie and or Josh.....

I sent jamie a PM and have not gotten any repsonse...

Has anyone been in touch with or heard from either of them?

Last from josh was he was recovering from TIL and feeling pretty weak....and last from Jaime was from his wife, when were they are at MDA.....nothing since from either of them that i have seen.

Hoping they are ok.

Anyone know anything?

thanks,

jenny 

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MindyD's picture
Replies 27
Last reply 5/22/2017 - 3:11pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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               I need some advice as I have no experience with cancer...until now. My Dad had a lesion on his arm biopsied and the pathology report showed melanoma. Apparently it is not the primary lesion and they did another biospy of a lesion on his face and that came back with the same results. He had a PET scan and MRI of the brain this week and the surgeon said that the brain was clear but he has two spots on his lung, one of which they "are very concerned about." Which I assume is cancer.    

                  My question is about what to do next. The dermatologist sent him to this general surgeon in the Jacksonville, FL area who ordered all of the scans and is going to call on Monday to talk about doing a biopsy.  We also have an appointment at Moffitt Cancer Center in Tampa for June 5th and will meet with an oncologist and surgeon on the same day. I am wondering if we should wait and have everything done at Moffitt or have the surgeon do his thing here and then follow up at Moffitt. I feel like my dad should have it done at Moffitt since they are the best cancer center in FL, but I also feel like we have been waiting for all of these appointments and tests and the weeks keep ticking by... I just worry that the longer we wait the worse it will get (and it's already pretty bad).

                 So if anyone has any advice I would appreciate it. I feel lost trying to navigate through the process. Thank you.

 

Catherine

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Anonymous's picture
Replies 4
Last reply 5/22/2017 - 1:13am
Replies by: Anonymous, messedmelanocytes, Janner

Hello,

I had melanoma last year and have had at least 10 severely atypical moles removed and lots of moderate and mild and some benign moles too.  I have tons of moles unfortunately.  

I am seeing a new doctor who has been removing moles that are moderately dysplastic that do not have clear margins.  They say not to worry about those but I can't help it as my previous medical center removed more skin for moderately dysplastic.  This new cancer center only removes more for severely dysplastic or melanoma.  

I am a young mother in my early 30's and don't want unnecessary stitches but want to make sure I am doing everything I should be doing.  

Thank you for your guidance.

Gina

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jennunicorn's picture
Replies 14
Last reply 5/21/2017 - 11:42pm

I need some advice about some allergy medications,,,

When I started this whole immunotherapy journey, I didn't have "seasonal allergies" or any kind of allergy. But right after my first infusion ever of Ipi.. in December 2015.. my nose was all runny and plugged up for a day. This happened after every infusion, and now a year and a half later and on Nivo, my newfound allergies have become difficult to control. I was taking Claritin every morning and that was helping a lot. I recently switched to Zyrtec because it seemed the Claritin stopped doing its job. But, I'm continuing to have at least 2 days a week of full on allergy attacks.. going through 2 boxes of tissue in a day!

So, if anyone else who has dealt with major "seasonal" allergies has any recommendations for OTC meds to try or if I should see an allergy specialist.. please let me know.. I'm getting reaaaaallllllyyyy tired of blowing my nose!

Thanks guys :)

Jenn -  IIIC - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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dmturner's picture
Replies 6
Last reply 5/21/2017 - 8:59pm
Replies by: BrianP, dmturner, Anonymous, UBContributor, Bubbles

Tomorrow I will be starting a clinical trial with the 2 above.  A bit nervous.  I did 3-10 mg Yervoy when stage IIIa, but progressed.  Then started Opvido/Yervoy Jan 5th did all 4 treatments.  Had a PET scan and progressed to lungs and effected lymph nodes had double in size.  Plus, I have intransit lesions all over my right foot.  The primary was on the bottom of right foot.  I am feeling hopeful.  It has been 6 weeks since I had any drugs in my body and I just feel like it is growing and growing.  I can see it daily on my foot.

Anyone else done or doing this trial?

Donna

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SOLE's picture
Replies 1
Last reply 5/21/2017 - 7:53pm
Replies by: Ed Williams

Have any of you ever had, through blood or tissue, your melanoma tested against the available immunotherapies (or chemos) like in the RGCC tests or Maintrac for exmple?

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Anonymous's picture
Anonymous
Replies 0

Does anyone feel like waiting is sometimes the hardest part?  I had a CT scan last week and won't get results until Monday.  I'm also waiting for follow up MRI on the 31st.  This will be the first one post radiation for a brain met.  This is also the first CT since being on Nivolumab only from Ipi/Nivo combo.  I'm wondering if it is working or if I should be talking to them about looking at other treatment options.  Should I ask for a PET scan?  I've only had CT scan and I understand PET shows metabolic changes.  Thoughts?

One last thing.  The hair loss post radiation was a big blow.  I didn't expect it to bother me so much.  I'm feeling much better now that I've cut my hair (think old lady cut) and have an appointment to get a wig.  I'm hoping it grows back but again the waiting.  

Have a great day.

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Bradley75's picture
Replies 10
Last reply 5/20/2017 - 10:24am

Just wanted to share some good news.  It has been a long time since I have been able to say that.  I had one dose of the combo back in January and the side effects wiped me out.  Once I was off steroids and beta blockers, they decided I was stable enough to try Pembro.  Monday the 15th was three weeks after my fourth dose.  I had my first scan and MRI since the December scan that moved me to stage 4.

The results indicate a 30% reduction in the size of the tumor on my spine, considerable improvement to the right lung, no new growth, and two other spots remain stable.  I am not 100% sure how to quantify the considerable improvement to the lung comment, but it sounds good to me.  All my blood came back within  the norms so I received my 5th dose of Pembro on Tuesday.

I wanted to share this as hope for those that can't handle the combo.  I was pretty doom and gloom when they told me I couldn't continue with it.  There is so many success stories with the combo that I thought what is the point of trying Pembro.  Keep fighting even when you feel there is nothing that can help.  I am by no means in the clear, but at least I can enjoy the next three months until my next scan.  I can spend the summer with my wife and kids knowing, at least for now, we are winning the battle.

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