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.

Expand/ Collapse Topic
 
Replies By
View Topic
Dhva's picture
Replies 0

Hi, I haven’t checked in in a while...my son was first diagnosed as 3B. Primary in the right forearm, clnd. He started on ipi, but stopped due to adverse reaction. Had a recurrence in the epitrochlear lymph node of the right arm.  He had radiation and then completed one year on nivo. It has been almost 6months since his last treatment, and his scans have been good except for some ground glass inflammation in his lung.  A few days ago he pointed out a lump in the back of his neck. There had been a very small lump there ( small bb sized) for a couple of years which the onc dismissed as nothing. Now it has grown to the size of a grape .  It is hard and reminds me very much of the met in his arm . For him to point it out at all means he is nervous. For him to have contacted his nurse (which he did) means he’s very nervous. The answer was that he has scans scheduled in two weeks anyway and they will see what’s going on then .  I am trying to be positive,and it could be something innocent, but can’t help but feel it’s back.  The scans are in two weeks, the follow up appointment for results  is almost three weeks later. Just not sure we should wait on this given the location.  If any of you out there have some advice I would really appreciate it!! I am a little stressed right now as my husband just had a parotidectomy yesterday and we are waiting for the biopsy results on that...the tumor was partially encapsulated and inflamed and involved the nerves and masseter muscle. And, just for kicks, my one dog has mammary gland cancer, and my other dog was just diagnosed with inoperable liver and pancreas cancer...so, good times, lol!  So maybe I am just in crazy mom mode, but I can’t help but feel that Mel is back. Thanks in advance for any advice.

Login or register to post replies.

So, after a rough first Ipi/Nivo combo dose, an easy second dose and, what felt like, an average third dose (not feeling terrible but not feeling great), when I went to get the fourth dose on Thursday I was stopped and sent immediately to the hospital to get some IV steroids. My AST, ALT and Alkaline Phosphate numbers were very, very, very high. I’m still here getting steroids via IV every 12 hours but my numbers are coming down and if I can get that pesky ALT number under 1,000 I can go home today. Yay!

Anyways, it’s the end of the combo for me. I’m not sad to see it go and am happy to have made it through 3 out of 4 and that I was somehow able to pull off my daughter’s first birthday party and take her on her first plane ride all while managing through unknown Acute Hepatitis. Oh, what a ride! Ha!

Since I am in the hospital, we decided to do my quarterly scans a little early. So, we’ll see what those say but the plan is to go back on Nivo once I’ve tapered off steroids. I have to admit that one of the hardest things about the past few days is watching all of my eosinophils plummet, along with the other good WBC values but I know that’s just the steroids and that those should come back up once I’m off of these. 

I really don’t have any questions, just wanted to share what a ride these past few days have been. I hope you all are doing well! 

Take care!

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

Login or register to post replies.

Chromaticbird's picture
Replies 1
Last reply 2/23/2019 - 10:13am
Replies by: ed williams

several weeks ago I got the results of my first biospy , stage 1B, malignant melanoma, non ulcerated, no lymph involvement , partial regression, 1.2 mm said to likely be deeper, mitotic rate 5.0 

today I got the results of my second biopsy : melanoma in situ- I was told I have a very atypical presentation .that theres a lot of inflammation(mine is red not black) 

now I am wondering should I go to  Sloan for a third opinion or  let the two labs that did my biospies duke it out and how is insurance involved since they have competing conclusions. 

of course a wide excision would cover both biopsies but is that the best way to deal with this ? thus ignoring the findings. 

the research of Joann Elmore is particularly compelling and disturbing although that applies to middles stages more so . still she went for three biopsies 

any thoughts ?

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 2/23/2019 - 10:19am

Hello all,

i was hoping some of you wonderful people may be able to advise how you cope with your emotions on being diagnosed.

I was told on Tues that I am stage 1a, I have a WLE scheduled in 6 weeks time.

I am so scared right now and my thoughts are running all over the place.  Counselling for Melonoma has a waiting list, which I am on.

M x

Login or register to post replies.

After the dual neck resections in December and 2 Opdivo treatments, I finally got a few scans a couple days ago after going to the ER for severe back pain. 

And mel is in my neck, several spots in my lungs, my liver, my spleen, a spot near my umbilical hernia and a nice big bone met on my spine. *mic drop* Oh and they won't call me back about the head MRI so let's assume its there too. All this in 3 months.

Has ANYONE else had it spread this far, this fast? To say I'm devastated is an understatement. 

I could really use some encouragement right now. :'(

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 2/22/2019 - 8:26pm
Replies by: jennunicorn, Tracyyy

Hi there,

I’ve been on opdivo for stage 3c nodular melanoma since the middle of last October. I just had a ultrasound done on my right armpit (where my cancer spread to) and it showed one enlarged lymph node. Could this be due to the opdivo causing inflammation? My oncologist wasn’t worried about it being cancer, but I’ll be meeting with my surgeon soon to go over the ultrasound in more detail soon. Just wanting some reassurance I guess. 

Login or register to post replies.

Zoe6565's picture
Replies 15
Last reply 2/22/2019 - 4:55pm

 Hi everyone! 

So we met with our oncologist on Tuesday. She is thinking to switch my husband treatment to braf/mek combo. She thought  there is no visible change in the size of the huge visible Tumor on the shoulder (although according to the ultrasound he did a month ago, 10 cm of the central part of the mass is fluid/necrotic tissue), also one the other subq tumor is bigger, and there are progressing in the lungs( now multiple nodules). But she also said we could give the third ipi/nivo a chance (this coming Saturday). So the plan is third ipi/nivo, then another set of scan on Wednesday, if there is still progressing moving to targeted therapy. Now my questions are?

is there still any hope for immunotherapy to kick in? Any experience?!

how durable is targeted therapy? Any positive thoughts?

we are from Ontario Canada, and from what she mentioned ( funding complications) we probably won’t be able to go back to immunotherapy after trying targeted therapy.

any help, advice or experience would be much appreciated!

many thanks as always 

Zoe

Login or register to post replies.

gopher38's picture
Replies 3
Last reply 2/23/2019 - 9:42am

Finished my last infusion for my clinical trial: either opdivo alone or opdivo&yervoy.  Lost count, but I think it was 25 infusions.  Last scan was clean, thank goodness.  Next scan is 3 months.  Got to say, I'll be missing my regular infusion-security-blanket a bit, but I'll feel great if the next unaided one comes back clean also.  Only semi-serious side effect has been shortness of breath, and I'll be interested to see (and hoping) that that fades as I stop the treatments.  Too cold and slippery to run outside in Minneapolis right now anyway.  Wishing us all luck.

Login or register to post replies.

Lucygoose's picture
Replies 2
Last reply 2/22/2019 - 9:13am
Replies by: Linny, ed williams

Hi

i am not yet staged, but am at least stage III as melanoma was found in an elarged lymph node without a primary tumor.  I go for my scans early next week and my first onocologist visit a day later  

I have read the patient support documents on this site and a few others and they have great questions to ask the doctor.  However I am interested in what the community has to say. 

What do you suggest a new patient ask the doctor at the first visit?

 

thank you for your support. 

Lucy

Login or register to post replies.

HollyC's picture
Replies 5
Last reply 2/21/2019 - 8:07pm

Hi!

I’m newly diagnosed Stage 3a. My melanoma specialist suggested “wait and see” with scans every 3-4 months. While my oncology surgeon said he would start immunotherapy if I were his sister or wife. 

I’ve been doing a lot of research and talking to several other melanoma patients and I feel that I should move forward with immunotherapy. However...since this is considered preventative as currently I am NED, however no one knows if there are still cancer cells floating around waiting to attack me again. But here’s my question....I know the standard course of treatment for Opdivo is typically 1 year...12 or 24 doses. However, I’m wondering how quickly does the treatment start doing it’s job?   Maybe I don’t really need an entire year of it?  Makes me wonder if a few months of treatment would be enough to make a difference and potentially kill any remaining cancer cells that might be there.  And then of course continue with regular scans.   I would think some is better than none.  I guess my thoughts are...if 12 months of Opdivo is the treatment for Stage 4 with visible tumors then is it “too much” for Stage 3a NED? 

i guess I’m concerned too that if I really didn’t need it now...will it be as effective when / if I should need it in the future.

I appreciate any and all comments! 

Thank you!! 

 

 

Login or register to post replies.

MikeInAK's picture
Replies 1
Last reply 2/21/2019 - 7:02am
Replies by: Lucygoose

Today I met with my oncologist and had my 3rd trip to the "juice bar" for another 240mg bag of Opdivo (nivo).   Two weeks ago right after my 2nd infusion, I had a full body check by my dermatologist as I had a fast appearing lesion on the back of my right hand, and I was a bit paniced.   She punch biopsied it, and 3 other moles.  Was a difficult wait for four days until the pathology came back, but praise the Lord, all were negative for our evil enemy Mel.   I was kinda suprised based on all of the other high risk pathologies.  

So.... Not sure, but I think I am NED, having the primary and 3 lmph node tumors all disected as well as all of the suspicious growths on me removed.   The onc said probably won't do another PET-CT scan for a few months, just stay on the bi-weekly Opdivo infusions, and 3 month checks by dermatologist, and lymph node checks every 3 months.   Also, I am seemingly not having much issue with my Opdivo slug, I feel a bit tired for a day with some mild nausea.  My blood work looks great too for the last three pre-infusion checks.  

It seems like its been a long road since November when this deal with the devil Mel started, and it has been.  But it is nice to see for the time being things are going my way.   

Since following this forum group I see our new members coming in with all of the anxiety and and fear of what road is in front of them, just like I did.   I just want to say, find comfort here from those much further down life's road with Mel, it has really helped me through these wicked few months. 

Peace

 

Stage 3C - Oct. 2018 9mm ulcerated nodular tumor primary on back discovered; Dec. 2018 WLE and SLNB (3 mets right and left axiila L 9mm, 2mm and 1mm); start Opdivo immunatherapy January 2019. 

Login or register to post replies.

Jenine's picture
Replies 3
Last reply 2/22/2019 - 9:23am
Replies by: swalters1038, Jenine

Hello friends,

I hope this post finds everybody happy and healthy for the moment. Every day is certainly a gift!  

My husband recently finished up a two-year clinical trail.   It seems as if he had a positive response to the treatment and he did not developed any additional tumors and the two tumors he have stabilized and/or slightly shrunk. I believe the term his doctor uses is necrotic. I understand this to mean the tumors are not alive but still there. This being said our surgeon has suggested to remove the tumor in my husband neck.   Has one in his sternum but it’s nearly impossible to remediate.

Would you suggest removing the tumor from his neck? His doctor thinks it would be a good idea as he said if the immunotherapy wears off the tumor could then become active again.  My poor husband is like a pincushion.  He is finally feeling better and recovering from all of the side effects from the two-year clinical trial. Can anybody off or suggestions or questions for me to ask the doctors at Hillman?  

Peace and Love,

Jenine

 

Login or register to post replies.

AlexCmons's picture
Replies 1
Last reply 2/21/2019 - 12:49am
Replies by: MikeInAK

Hello everyone currently 25 male.  Fair Skin. got two moles removed.  One in my back had some odd colors and big but I never noticed any itching or bleeding. But concern since they said it looked concerned.  Also one on my scalp was pink but got irritated cause it was underneath of my hair on scalp any advice? Currently in panic mode.  

Login or register to post replies.

mrsaxde's picture
Replies 8
Last reply 2/23/2019 - 10:42am

Hi Everybody,

I just had a talk on the phone with my radiation oncologist. The bottom line is that my latest brain MRI revealed a questionable new spot that she said she wasn't sure what to make of. It's very tiny, but it definitely wasn't there on the scan I had pre-radiation just over a month ago. She said that she would defer to the radiologist's opinion on it since they are trained to spot things like that. In addition, one other treated area on my cerebellum is quetionable, and may be showing new activity.

I haven't talked to Dr. Sharfman yet, and I need to get the pictures sent to him, as the local cancer center only sent him the report. But I'm afraid this is going to disqualify me from the anti IL-8 trial I was hoping to get into. That leaves more radiation and Temodar as my only treatment options at the moment.

I've been dealing with this for six years now, and for the first time I'm feeling pessimistic about the future. I'm sorry about whining on here but I needed to vent. I wouldn't call my mood "devastated" but this is a major hit. Thanks for listening.

-Bill

Login or register to post replies.

cjm22's picture
Replies 2
Last reply 2/20/2019 - 6:32pm
Replies by: cjm22, Hukill

We talked to the oncologist about my husband's PET scan from last week! He has been on Keytruda since mid-November and also got one low-dose Yervoy three weeks ago (next one is tomorrow).

Mixed results:

- Most mets have shrunk (in fact, the one near his spine that put my husband in a wheelchair and in the hospital last November has disappeared)

- There is one small, new spot elsewhere in his spine

- The spot in his adrenal gland looks brighter on the scan

- His liver looks a little worse in his blood work

So ... Mixed bag. The oncologist thinks that the new spot in his spine as well as the brighter spot in his adrenal gland could be due to the introduction of Yervoy, since that might have led to additional inflammation. She says it's hard to tell from the scan. The liver issues might also be from the Yervoy.

He will go back for blood work again in a week and a half to monitor his liver more closely.

He will also get another PET scan in three months (barring worsening symptoms in the meantime) to get a clearer idea of whether these drugs are really working for him or not.

She said overall the meeting was positive, but I'm still pretty sad. I was hoping for better news -- that everything had shrunk.

But I guess for now we just keep on playing the waiting game.

Login or register to post replies.

Pages