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.

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About half-way done with planned six-month course of Keytruda. Got scan results this week:

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1. Partial response to therapy with significant decrease in size of the mass posterior to C7 and near-complete metabolic resolution of the right upper back skin lesion.

2. FDG avid focus within the posterior aspect of the left prostate is nonspecific on PET and could be due to focal prostatitis or malignancy. Please correlate clinically/lab results.

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Not sure how to take this. The possibiltiy of a second cancer (prostate) is concerning, though we know prostate cancer is (usually) very slow growing.

Can a "partial response" turn into a "full response" later? Or once a partial always a partial?

-Betsy

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Shannon B's picture
Replies 4
Last reply 5/28/2017 - 4:12pm
Replies by: messedmelanocytes, Anonymous, Toby0987

Has anyone else experienced flu like symptoms prior to being diagnosed? My husband has been NED 10 1/2 years, MUP, 1 positive node, lymph node dissection only. Had a lump come up on the back of head that we were watching. Started running a fever 3 weeks ago and thought he had a bug. Noticed 2 more lumps pop up and made an appointment with family doc and melanoma doc. Tested for Lymes and Mono but negative. Treated with doxycycline just in case. Another lump popped up before we made it to oncologist. Biopsied 1 lump, lymph node positive for Mel. Still having awful flu like symptoms, fever, severe fatigue. Scans coming up on Wednesday and meet with docs again Thursday. Anyone else experienced this? I'm assuming it's caused by tumor formation? Thanks for any help!

Shannon B

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maryb-z's picture
Replies 9
Last reply 5/28/2017 - 3:33pm

Hi Everyone,
Jamie's wife contacted me and said ever since the melanoma went to his spinal fluid it's been hard for him to post here.I'm heart broken to inform you all that hospice has been called in to assist Jamie. Please keep him, his 3 adorable young kids, and his wife Shawn in your thoughts and prayers. It was his birthday yesterday.

No One Fights Alone

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Ridingaroundwith27Jennifers's picture
Replies 3
Last reply 5/28/2017 - 3:17pm

Has anyone had severe muscle spasms and burning pain?  I have this down the right side of my body, neck, shoulder, upper arm, abdomen, groin, leg, and foot.  This is the foot I had lost sensation in from the removal of the brain tumor.  The surgeon was quite positive I would regain sensation so at first I thought maybe this was related to regaining the feeling.  Then it moved up into my abdomen and should.  I'm worried this is due to tumor growth.  I'm worried.  Especially since this is only on my right side.  If the turmor is growing could it cause spasms?

Thanks

Jennifer

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Shaneswife's picture
Replies 8
Last reply 5/28/2017 - 1:23pm

Things were such a normal morning. Until I saw shane and he was in such a fog. Couldn't speak and was wandering around. I got him to sit down and he started seizing. Grand mal seizure. We are in hospital now and they are loading him up with anti seizure medications. It's absolutely terrifying to see him seize. I really thought he was dying right then in my arms. 

 

Janis

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AliCat61's picture
Replies 2
Last reply 5/28/2017 - 1:04pm
Replies by: Bubbles, Spl25

Wouldn't you know we would get the radiology report on the Saturday before a holiday! We will have to wait until Tuesday to talk to anyone, and it will have to be a Nurse Practitioner as the oncologist is away at a conference. Arghhh! To give a little background, hubs was diagnosed with nevoid malignant melanoma in 2015, did a year of interferon treatment, and in January 2107 was diagnosed with metastatic cancer after a PET SCAN lit up parotid gland and very small spot on left lung. he's had 3 out of 4 combo treatments (Opdivo and Yervoy) and is scheduled to get the 4th one on Wednesday. He was treated twice for pneumonia and Monday the pulmonary specialist decided to do a CT with contrast and a CT without contrast as well as bronchoscopy. The pulmonary specialist said everything was "fine" but the report that we got in the mail today is concerning. 

FINDINGS: There is a 12.5mm nodule within the superior segment of the left lower lobe. This appears increased in size from comparison exam. This is noncalcified in a somewhat spiculated margin may represent a pulmonary neoplasm. There is a small left pleural effusion. 

Cardiomegaly: Pulmonary vascular congestion with evidence if interstitial alveolar edema. Prior granulomatous disease. Limited imaging of the upper abdomen shows a small hiatal hernia. 

A small mediastinal and hilar lymph nodes. These are non-specific. Or degenerative changes of the spine. 

Impression: Enlarging nodule with the superior segment of the left lower lobe. This may represent pulmonary neoplasm. Followup PET CT is recommended after the patient has pulmonary edema has been corrrected. 

To me, that sounds like that tiny spot in lower left lung may not be so tiny anymore. The area around his parotid gland on right side of jaw line extending behind ear enlarged and became hard and painful after initial Opdivo&Yervoy Infusion. It began to press on a facial nerve and caused a few days of intense pain. But then after about 4 days, it began to shrink and has shrunk consistently. Hubs say he can't even feel the initial little pea size lump anymore. It doesn't really make sense to me that one spot would seemingly respond so well, while another grows larger. Any thoughts? I thought if one spot responded, all would, since it's all melanoma, but what has your experience been? Tuesday seems like a very long time from now.....

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Hammers's picture
Replies 5
Last reply 5/28/2017 - 12:06pm
Replies by: Anonymous, Hammers, UBContributor, casagrayson

Hello,

I was diagnosed in Feburary with a pt1a tumor on my back, depth was .38 and no ulceration or mitoses.  WLE was perfomred and I have had my first follow up.  I have had 7 other spots removed that all came back normal or mild atypia.  My question is, I have developed a small dry caugh in the past week.  How long should I wait before I call my Dr. and let her know?  I don't want to freak everyone out and then end up getting irradiated for no reason.  I also have intermittent GERD that has caused a minor caugh in the past that has been acting up, but now I am paranoid since the MM diagnosis.

How long should I wait to go into panic mode and call my dermatologist?  

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D1983j's picture
Replies 6
Last reply 5/27/2017 - 5:29pm
Replies by: D1983j, raun cesar, Anonymous

I have had stage 1 a Mel a year ago. I worry a lot about bumps and moles but the anxiety gets a little better. I have a bump very small on my scalp and it's not red or growing. My husband checks my scalp often and says he doesn't even see it unless I make it red. I have been able to sort of scratch it off but I have really dry scalp anyways. It will bleed if I really scratch hard. I know I shouldn't but I thought it was a pimple or ingrown hair type thing. Now in saying all this my husband has told me that I was worried about it before my last apt in Feburary and my derm who checks me well didn't notice anything. Apparently I wasn't worried enough to ask at the time. My main worry is nodular melenoma and I'm pretty sure that wouldnt scratch off easy and it would be growing bigger fast which this hasn't. I've really had bumps or pimples on my scalp before and didn't think about it because I knew she was checking me and they didn't have characteristics but now I'm going into worry mode. Any help would be appreciated. I've read about sebacious cysts as well which I lean towards considering the time it's been there and how oily my scalp is there. Thanks for listening! This site has helped me a lot over this journey and I pray for anyone affected.

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Shannon B's picture
Replies 6
Last reply 5/27/2017 - 3:51pm

Hello all,

I haven't been here in years. My hubby was NED stage III November 2006 after a lymph node dissection. I stayed around here for a few years but found that I was staying worried all the time. We found out today that Willie's cancer has returned. We go next week for scans. He has an unknown primary. What's new as far as treatment these days.

Thanks for reading!

Shannon B

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Bobman's picture
Replies 1
Last reply 5/27/2017 - 2:05pm
Replies by: AliCat61

Greetings  warriors . ...Had a pet scan last  Thursday , and here is how it reads:

"There is a mildly  hypermetabolic complex nodule  in the superior  right  upper  lobe that has SUV max of 1.2 new since the previous  study of 4/28/16. This lesion  may have an underestimated  SUV-max due to its  small  size. This could  be either inflammatory  /infectious  or metastatic . Previously  in the same region  there  was  a  cavitary lesion  that was not metabolic . "

There is persistence  of the anorectal activity  with SUV max of 6.2, previously  8.1 that requires  endoscopic  evaluation , if not already  done.

So , as many of you know I'm  in a holding pattern  trying  to get to the specialists  at UCSF. Been denied  twice by insurance , and currently  in appeal ,which the folks  at the University  helped to organize . They want to see me ,but we're  just waiting  the decision  on the appeal  before  moving  forward . Should  know within  a couple  weeks  on that. In the meantime , I'm  going  to rest up another  week , then start the cutting  again . I have about 20 more lesions  that need to come off pretty  quick . It's  just me and my surgeon  until  I   get to California . 

As a side note about my oncologist  and the current  results , at first he was all gung-ho  about my heading  to the university , but when  I  pushed  him hard to put it in writing  to help me, as my surgeon  did...he back pedaled and said  he didn't  think  they  could offer anything  more than I get here.

I know better  after all my experience  now,that's  it's true  what you all have stated so many times......get to a melanoma  specialist ! !

I'm trying like hell, and it's  going  to  happen . Eleven  primaries , and holding.

Bob

We are one.

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AliCat61's picture
Replies 5
Last reply 5/27/2017 - 1:48pm
Replies by: AliCat61, Bubbles, marta010

We had a HORRIBLE experience at the hospital yesterday. If you want details you can visit https://www.caringbridge.org/visit/roychappell/journal and read the post from the 22nd, including the comment. I woke up feeling like a Mack truck had hit me and I know that however bad I feel, Roy is probably feeling 20 times worse. I have channeled my anger appropriately, to the proper people in a factual manner and I have been assured by the Quality Director and Risk Manager of the Hospital that she will "open an investigation into what happened to you and your husband yesterday.  I will respond to you in writing with the results of the investigation and any needed changes to the processes needed.  Thank you for your feedback.  We cannot make changes unless we are aware of the concerns and issues. Thanks again for sharing your experience with us.". So I feel that I have been constructive, hopefully preventing something like this from happening to others in the future, but I'm still just plain ole MAD. They stole a day of our lives from us that we can never get back. I'm going to let myself cry just a little, then I'm going to go and hold my husband and snuggle with him and be grateful for today. I might even break the sugar ban and have some Mint Chocolate Chip ice cream :). I have a feeling that this experience is going to be a little tough to let go of though, Anyone have any suggestions? I have to hold so much in for my husband's sake that I feel like I am going to self-implode one of these days. I tell myself to put my big girl panties on, because I KNOW that so many of you are in much worse positions with young children, while our children are grown and my husband is 70 and has had a good life. I KNOW that but I also know that what happened yesterday didn't have to happen and I am just plain ANGRY on behalf of every hospital patient ever.  If you are a praying person, please pray for me to find the strength to be a better, stronger person and let this go. If you're not into prayer, good vibes and positive thoughts are appreciated too. Love and hugs to all of you who have to go through on this awful journey. 

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Jeff_in_FL's picture
Replies 5
Last reply 5/27/2017 - 1:40pm

Hi all,

Here's a question that I'm curious about:

When someone mentions "tumors" in their postings, are they usually out likely referring to moles, or would it be more likely lumps? I constantly see posts where people mention something like "...I found two more tumors ...". Just trying to correctly understand the terminology.

Thanks,

Jeff

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RitysMom's picture
Replies 3
Last reply 5/27/2017 - 12:21pm
Replies by: Anonymous, raun cesar, Ridingaroundwith27Jennifers

I thought I had read somewhere that you could start immunotherapy when on steroids in some situations. Is this true? Can anyone point me in the direction of articles, studies, etc.? My daughter just finished two weeks of WBRT on Wednesday. They tried tapering her quickly off the steroids so she could begin immunotherapy by 5/31. She ended up having a seizure and falling, so they went back to original dose. Now, they're tapering slowly over a month and she won't be able to start immunotherapy until June 28th! I'm so afraid that the tumors in her body can come back/grow during that time. Am I being unreasonable to think they could taper her a little more quickly, so she could begin treatment earlier?

Cindy 

Mom of the beautiful Kristine

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Maureen038's picture
Replies 11
Last reply 5/27/2017 - 11:58am
Replies by: Maureen038, Ed Williams, UBContributor, Bubbles, Anonymous

Hi all,

    I visited this site a lot but don't write on it a lot. I care so much for everyone here and truly hate this disease!!! My husband had scans on Thursday and has a new 1.5 cm nodule in his liver. Everything else is stable but having a different organ involved is terrifying. He had a MRI this morning so we're in the awful state of waiting and wondering what's the best option. Please give me advice on what's best for Bill.

love to all,

maureen

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/27/2017 - 10:20am
Replies by: Anonymous, Ridingaroundwith27Jennifers

My step-daughter, who is eight months pregnant, has just had a preliminary diagnosis of Stage 1B melanoma on the sole of her foot. Apparently she will have a wide excision and a sentinal lymph node biopsy within the next couple of weeks. She meets with specialists next week to make a plan, but meanwhile, we are all very worried for her and the baby. It would be great if someone who's been in a similar situation could share their experience.

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