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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Megara984's picture
Replies 4
Last reply 8/23/2017 - 6:45pm

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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mrspink's picture
Replies 4
Last reply 8/23/2017 - 4:49pm
Replies by: Scooby123, sister of patient, jennunicorn, Anonymous

I only posted a few times but my father passed from stage iv melanoma last week. Obviously heartborken especially becuase he was only diagnosed in March but we want to hopefully make a difference with donations to help with reasearch or educational purposes. 

We'd like to suggest a donation to a melaona group in lieu of flowers. I know this page has the post on the top that I'll use if I don't have any other suggestions but wanted to check with you all on any suggestions of great groups. 

Thanks. 

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AvaL's picture
Replies 3
Last reply 8/23/2017 - 11:43am
Replies by: SABKLYN, Anonymous, Toby0987

Hi, hubby stage 3a and year out from diagnosis. I know melanoma is wildly unpredictable but does anyone have any research/stats about chance of recurrence the further out from diagnosis one gets. I know it reduces after 2,3,5 years etc, but anyone know from and to what (approx) for this stage? Feels like need to appreciate each small milestone, cautiously of course x

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Nemesis's picture
Replies 6
Last reply 8/23/2017 - 9:33am

T1b here, 9 months post WLE and SNB. My melanoma was discovered during my post partum period (6 months after giving birth). I am not sure if a second child is off the table for me at this point. I want to wait for two years before trying to conceive, but I have read studies that say melanoma is worsened by pregnancy, therefore I am not sure if I should even risk it.

What would you do in my shoes?

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guynamedbilly's picture
Replies 1
Last reply 8/23/2017 - 9:27am

I had my first Nivo injection thursday and have not had any side effects at all.  I was nervous about it, which is nothing new since my diagnosis over a month ago, and my blood pressure was up.  In the end, there was nothing to it.  On a previous post, some were curious how I got approved for Nivo at stage 3a, and I am following up.  

 

I asked my oncologist about how I was approved so quickly, and she said they have had a lot of patients approved for it over the past two weeks, and only one rejection.  She acted like a lot of it depended on the insurance claim agent they tallked to, so maybe Bluecross is just especially good in this regard.  Either way I'm very happy and feel lucky to be near to Vanderbilt.  

 

If there is anyone needing this option, maybe now is a good time to get your doctor really trying to get it through insurance.  Good Luck

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Dhva's picture
Replies 4
Last reply 8/23/2017 - 7:59am
Replies by: Dhva, jennunicorn, AZSoCal

PET scan is positive -4x3x4 cm mass in arm.( about 9 inches from where the primary was located)  MRI also indicates an 8mm soft tissue nodule in the left suboccipital lobe.  No communication from the dr except to email an appointment with the surgeon.  Wondering, based on your experiences,  what is next besides surgery. By the way- found out about the test results on the patient portal.

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Anonymous's picture
Replies 7
Last reply 8/22/2017 - 11:33pm

All of my lymph nodes which tested positive are in the same "field / mat" under my arm (primary was on my chest).

Does the term metastatic come from the fact I may have micro-metastize particles which can travel throughout my blood and lymph system?

I'm having a hard time distinguishing between stage 3 and 4, but it seems like the difference is in where the melanoma is found and not necessarily a difference in prognosis.

I can see the difference between stage 2 and 3 being prognostically significant because at stage 2 the melanoma has only been "found" in the skin. However, just because it hasn't been found in other places doesn't mean the micro particles haven't started spreading to anywhere else.

ok, I started out with a question and ended up scaring myself.

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis), recurrence Sep 2017 (node by ear)

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Nicklindner's picture
Replies 3
Last reply 8/22/2017 - 7:23pm

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 0

 

As far as I understand, the approved treatments for bone mets (excluding systemic therapies like BRAFi and PD1) are as follows:

1. X-ray Beam Therapy

2. Denosumab/bisphsphates

3. Surgical removal

Are there any other treatments for bone mets and melanoma or treatment strategies beyond this that specifically treat bone mets? Are there any centers that focus on bone met treatments? Is SRS an option once XRT has been tried? Any non-pharmaceutical approaches backed by scientific studies? Perhaps I'm grasping at straws here. 

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Anonymous's picture
Anonymous
Replies 10
Last reply 8/22/2017 - 2:08pm
Replies by: Anonymous, MovingOn, Sharon93065

  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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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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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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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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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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