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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Sharon93065's picture
Replies 3
Last reply 8/22/2017 - 8:46am

When my liver numbers went thru the roof my 4th treatment of Opdivo/Yervoy was cancelled and i was put on Prednisone.  50 per day for 5, then 40 per 5 etc.  Weaning down on dose. My AST and ALT have come down, being tested by weekly.  But i have not slept since the first night. I wake up at 1:30 to 2:30 and that's it.  I'm  up.  Sometimes i can go back to sleep at 4 or 5am for only a  hour or 2  but not always.  Too tired to get up to go to church yesterday.  I have message to my oncologist to ask 'liver' doctor what can i take maybe even 1 to 2 days a week to sleep.  I have trazapan, xanax, benadryl, melatonin.  I thought melatonin would be more natural but i read it does something with our immune system.  He told me on my last visit not take take xanax.  I've only had one since May anyways, i try not to.  All these go thru the liver so we're not supposed to take them.  I looked up  my Health Summary and it's called Drug Induced Hepatitis.  To make matters worse I am sure i have a bladder or UTI infection, so drinking lots of water etc.  I did email him to include urine test in todays liver panel.  So last night in the 3  hours sleep i did get up got up every hour to potty.  Has anyone else had insomnia from Prednisone?  I've drank hot mile with chamomile tea. I even read a teaspoon of honey tells the liver to give you sleep.  Didn't work.  I am taking a xanax at midnight tonight.  I set my alarm, I'm sure one pill won't hurt me (I hope). Or s hould it be a benadryl???   I am upset that Kaiser has me waiting a month for my new Petscan. I am calling Membership to complain tomorrow.  I am both worried and excited to see what has been going on inside of me.  The inital large bump on my back disappeared the day after the 2nd treatment (Icould feel with my hands.)  But I feel stuff going on in other places I'd like to know about.  And thank you for those that have sent me those wonderful messages about not being too upset about missing my 4th dose.  Sharon

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/21/2017 - 11:16pm
Replies by: Sharon93065, MovingOn

  My husband's third treatment (yervoy/opdivo combo) was May 16th.  He was scheduled for the fourth treatment June 6th but because of side effects he was in the hospital at that time.  His doctor recommended stopping treatment at that point and waiting a short while until he gained some weight back and some of his side effects subsided. His scan on  July 25 showed decreased size in all tumors except one in his adrenal gland and it had stayed the same (no growth).  It was then decided to wait 2 1/2 months  and do another scan and then discuss what route to go.

 The weight is returning and all side effects seem better except for a brand new one...... Now it seems at times when walking he will stumble. He doesn't fall--it just seems to be a balance issue.  My main concern is this is happening so long after treatment has stopped....anyone else have this issue?  

 Thanks in advance for replies!

 

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Dave63's picture
Replies 6
Last reply 8/21/2017 - 11:07pm

I was recently diagnosed with malignant melanoma stage T1. I explained to my family about diagnosis and that I had cancer on my shoulder. Their response "it's only skin cancer, it's not that bad". I guess I don't know how to take that. I understand there are other cancers that are more severe, maybe I just shouldn't mention it to anyone. I've never had anything like this before and I was just looking for support. Has anyone else had this reaction from family?

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/21/2017 - 10:50pm
Replies by: Anonymous, Janner, Jamie1960

Has anyone experienced moles that flake or rub off? I've had a couple that if I rubbed my finger back and forth over, they just flake away. Is that a tell-tale sign of them being cancerous? Was never very melanoma-savvy so now im wondering what that might mean. Can melanoma be flaked, rubbed, or scratched off? 

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mrsaxde's picture
Replies 2
Last reply 8/21/2017 - 10:11pm
Replies by: mrsaxde, Anonymous

I got the results of my CT scan at the end of the first 45 day cycle of the anti-LAG-3/Opdivo combo trial yesterday. I'm going to classify the results as "mixed."

When evaluated using the RECIST 1.1 protocol I have been classified as having "stable disease." There are two "target" lesions. One grew by 7% and the other was unchanged, as measured using that protocol. So that fits the qualilfications for stable disease. But two other, "non-target" lesions were classified as " more prominent.

Looking at the standard radiologist report of the scan, there is currently no cancer in any of my organs, which of course is good news. The lung nodules that were killed by Keytruda are gone and nothing new has taken their place. But several lymph nodes in my chest are all larger. I am hoping that is due to something like t-cell infiltration. I didn't see Dr. Sharfman yesterday, I saw the nurse practitioner instead. And she told me that is certainly possible, and added that I am "still very early in the game."

So yesterday I received the first infusion in cycle 2. I have a ton of questions for Dr. Sharfman in two weeks, mainly how I should be feeling about these results. One bit of good news: my lipase has returned to normal. I guess I'll have a clearer picture of everything around the beginning of November.

-Bill

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Megara984's picture
Replies 1
Last reply 8/21/2017 - 10:11pm
Replies by: MovingOn

Hey all... My husband is going on round 3 of the Opdivo/Yervoy infusion in a week. His oncologist and nutritionist want him to eat 2300 calories a day and maintain the weight he has on him. Since his second round on August 10, I want to say the past 2 weeks have been kinda crappy. His coughing got slightly worse and he could only keep down so much food. Needless to say he has lost another 2 pounds. He FINALLY had a good day yesterday and managed to keep alot of food down and has mentioned that he feels like the swelling in his neck area has gone down (he can feel his adam's apple again). This to me is good news and that the Immunotherapy is working. I'm looking for some suggestions of High Calorie foods that will help him start gaining some weight back. Any suggestions are welcome. Also, has anyone experienced weight loss while on this type of treatment.

Thanks.

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Nicklindner's picture
Replies 2
Last reply 8/21/2017 - 6:53pm

Good Morning,

I started immunotherapy back in December and the first few times I ate my favorite food(sushi) i ended up vomiting shortly after.  I just chalked that up to the drugs and not the sushi as I had thrown up other times as well.  I had been feeling relatively well, as it related to naseau, for a few months and 2 weeks ago tried eating sushi again. Within 2 hours I was hugging the toilet and the experience was different and more painful then before.  I still have not recovered fully - the naseau has remained and my appetite has suffered.

 

Has anyone else found that once enjoyable foods now have negative side effects? have you found any solutions? 

Thanks everyone,

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/21/2017 - 5:50pm
Replies by: coconoel, Anonymous, Janner

I wonder what is the recurrence rate for a stage 1a melanoma. I have read that the recurrence in thin melanoma is low and the chances of spread local, regional and distance is low, but how low is it? Exist any statistics in thin melanomas grouped by breslow depth ranges or clark level? How  low risk is with a Breslow 0.63 mm, clark III mitosis < 1 no ulceration and primary on top trunk ? What are the chances of a recurrence? I have read some people with stage 1 turns to stage 3 or 4 some years after diagnosis.

Thanks!!!

M.

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jrtufo's picture
Replies 5
Last reply 8/21/2017 - 2:17pm
Replies by: J.bun, jrtufo, Anonymous

Hi caring friends

I've been off of the vem/cobi combo for a week and I can't get the itching under control.  The severity of my rash is subsiding but no ammount of steriod cream, atavax, or zyrtec seems to help.  Oatmeal baths provide in-the-mommen relief, Arinca is good for about 30 minutes, but I can't sleep, can't sit still, pretty much going nutty with the itching.  Help!

Julie T

JulieT

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malui's picture
Replies 1
Last reply 8/21/2017 - 11:56am
Replies by: J.bun

In the middle of July I found a swollen lymph node in my groin area.  Making sure it was nothing, I went to the doctor the next day to get it checked out.  2 ultrasounds, 1 biopsy and 1 month later, turns out there were malicious cells in the lymph node pointing towards melanoma.  The doctor then checked my entire body and found nothing that points to a primary tumor.  Her best guess was a pinpoint sized dot under my toe nail.  It has been about 2 days and I am currently waiting to see a specialist. 

In a nutshell I’m scared.  I am in my early 30s, with a wife and 2 young kids who are the joys of my life.  I have told my wife a thousand times that I cannot wait to watch them grow up and get married and get to meet my grandkids.  I am trying to stay positive but there are so many thoughts and emotions running through my head.  Right now, it seems like waiting is the hardest part.

I don’t know what I’m really looking for by posting here.  I guess really just positive thoughts and advice on how to get through the unknown parts.

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Ridingaroundwith27Jennifers's picture
Replies 2
Last reply 8/21/2017 - 11:44am
Replies by: J.bun, Hollybmeuc

Hi All,

I keep learning new things.  I've learned the worst place to have an IV when getting contrast for your CT is the wrist.  I've had 5 CT scans prevously and it has never hurt.  I almost jumped out of the machine but no more complaining.  The scan looked good.  Tumors are still shrinking.  For some reason I thought there were only two left but it turns out it is three left.  Not bad considering I started out with over twenty.  This time around the oncologist mentioned that it could be scar not tumor.  I didn't realize that it was possible to end up with scar tissue where tumor initially was.  So we continue with nivolumab and wait for the MRI next month.  If that looks OK then we will make a plan. 

The other good news is that my hair is growing back after the brain surgery and radiation.  It's almost an inch long and doesn't blend well with the rest of my hair.  The style is a little bizzare.  I actually went out to lunch on Friday without a hat.  I should just go get a new style but I'm afraid to get my hair styled because of the surgical site.  I know it's silly but I haven't wanted anyone near my head since the surgery.

Augut 29th, 2016 is the day I had my first CT scan and started this journey.  As the one year mark gets closer I find myself looking back on the journey.  The short version is that I fought with my primary care's help to get a biopsy.  [My dermatologist of 10 years failed me.]  CT scan at the ER; biopsy; stroke; 4 day hospital stay; Ipi/Nivo combo infusion 1; Ipi/Nivo combo infusion 2; extreme fevers, chills, nausea; 5 day hospital stay in the MICU with IV antibiotics and blood cultures to rule out infections; 1 day home with extreme nausea; IV steriods with another 5 day hospical stay.  2 months on high doses of prednisone and then cellcept;  2 months of watch and wait;  brain tumor;  brain surgery resulting in loss of feeling in right lef and foot; tumor regrowth at 10 days post op; targeted radiation and nivolumab.  Seizure.  Seizure meds.  6 months no driving.  Did this really all happen to me?  Has it really been an enitre year?

Who am I now?  What's my new normal?   Three forever meds.  I'm a pill person now.  Pills so I don't have a seizure, pills for my thyroid, pills so I can sleep.  Injectable blood thinners.  Pills to control the itching.  I've got 3 more months on the driving ban.  My right foot is still numb.  

Apologies for the mega post.  I'm sure many of you have been through so much more than I could ever imagine.  You've come through the fire so I know I can too.  Best to you all and thank you for being there.

Cheers!

Jennifer

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rg1981's picture
Replies 2
Last reply 8/21/2017 - 9:50am
Replies by: rg1981, Ed Williams

Hi there. I was first diagnosed in December 2015 with stage IV. Melanoma is in Ota's nevus and behind the eye, so nothing was visible - I have noticed thad I had some problems only after my eye started moving up in the eye pit and and double vision started. So finaly I was diagnosed with stage IV, inoperable, BRAF negative. I was prescribed to get nivolumab as single agent and until recently it worked fine. The tumor shrank significantly and SUV max was quite low (2-4). Up to date I have already got 41 cycles of Nivo without any significant side effect (except thyroid problems). But last Friday I received my latest PET-CT results and they were scary. The tumor started growing with SUV-max of 16 that as far as I undrestand is very high. So what it may be? Nivo stopped working? Are there any other treatment options? Has anybody ever had similar experience? Tumor board should be held on Wednesday and on Friday I'm meeting my doctor but would like to hear something before.

Many thanks in advance

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jc2dad's picture
Replies 8
Last reply 8/21/2017 - 8:50am

5 nodes removed with primary tumor on August 7th. Primary was subungual on left middle finger. Amputation at middle knuckle. Tumor was ulcerated 7mm. Took 3 nodes from arm pit and 2 from near elbow. 2 of 3 from arm pit positive, both in elbow positive. One in armpit was a little over 1 mm tumor but capsulated.

Receiving all services at MD Anderson. I meet with oncologist, surgeon and team on the 25th to discuss removal of more nodes and treatment optioms.

BRAF V600 negative, MRI and CTs negative, no PET conducted.

Any advice on different options and pros and cons would be very appreciative. The nodes by the elbow showed very light cancer with 50 and 25 cells respectively.

Is wait and watch a good approach, should I have CLND if suggested, what targeted therapies are available?

Thanks in advance.

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NicholePhillips's picture
Replies 9
Last reply 8/20/2017 - 10:18pm

I was diagnosed in February 2015. I had a mole that kept growing on my right ankle. I had a wide excision, skin graft and sentinel node biopsy which came back positive. 2 weeks later I had 8 lymph nodes removed from my right groin area and only 1 was positive. I was stage 3b. It took about 2 months to heal and then I started a year of interferon. I was sick the whole year. I completed that in June 2016. Scans every 3 months. January 2017 scans were clear so now scans every 6 months. I had my scans a couple weeks ago and they found a large mass(6cm) in my right pelvic area believed to be lymph node related. August 18, 2017 I had a CT guided biopsy to confirm the melanoma is back. Now I wait. Has anyone experienced this and if so what treatment options were you given?

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MariaBailey's picture
Replies 7
Last reply 8/20/2017 - 5:42am
Replies by: Sailor, arthurjedi007, MariaBailey, mary1233, Anonymous

My Mom was diagnosed in October 2014 with Mucosal Melanoma of the Nasal Cavity. She had surgery to remove the small tumor, half her pallate, part of her cheek bone, half her jaw and her lymph nodes from her neck. Then had radiation 35 treatments. The doctor told her that he believes he got all of it but this is a very sneaky cancer. Well in December her side hurt and she had a x-ray. They found a mass on her bone. With a byopsy they found the mucosal melanoma spread. She does not have any of the protein variations so they have her on Yervoy. Has anyone had this and if so what other treatments are there? I have been doing research but it seems all the treatments that are working very well deal with the variation of the proteins (BRAF, NRAS, and Kit). This is making me nervous and I am trying to find out other treatments to help my mom live a long full life. Thank you

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