MPIP: Melanoma Patients Information Page

Register Login Help

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
TimCT's picture
Replies 3
Last reply 5/7/2020 - 11:26am
Replies by: JudiAU, TimCT, Threefitty

Hi Guys,

Had my 4th and final ipi/nivo combo treatment yesterday. Everything went fine as it always does, and nothing of note on my blood work except slightly elevated liver enzymes, as usual.

My doctor was surprised that at this point, I've had no major side effects to report, not even a rash, or a few bouts with diarrhea. Really, I've only had to deal with fatigue, which lately hasn't even been as issue like it has in the past few months. I had some joint pain a few weeks ago that lasted a couple weeks. But that's been all. Going by the labs, there don't seem to be any issues with my thyroid or my pancreas.

On the face of it, that's great, right? None of the AEs that we were warned about. When people ask how I'm doing, I just kinda shrug my shoulders and say 'fine', because there isn't much to talk about. Everyone seems to be pleasantly surprised and cheered that I'm doing so 'well'.

Of course, privately, I'm having a very hard time trying not to freak out because even though I shouldn't be, I'm at least on some level worried that no AEs = the immunotherapy isn't working. I know that there isn't really a concrete correlation there, further, Dr Sznol reminded me of that yesterday, and that I'm still early in the process. Its only been 9 weeks (and 5 days, but who's counting?) since I've started treatment and there is a definite requirement for patience. I had progress early on - the lump on my neck shrunk by over half, I would say. However, I haven't had any progress like that in a few months, and there now seems to be some new inflammation under my jaw. Is it disease progression? Is it inflammation because of a response? Who's to say at this point? I have scans scheduled for the 27th of this month, so I suppose they will tell the tale. I'm already anxious, of course. Sigh.

I suppose that part of dealing with this diagnosis is trying to find positive things to hang on to, and this early there aren't very many. Its still very much trying to deal with the unknown. Hopefully as the days and weeks and months roll on, I'll get better at that. Sorry for the rambling, though at least writing it out helps some!

Tim

Login or register to post replies.

hxcadam's picture
Replies 4
Last reply 5/7/2020 - 12:49pm
Replies by: hxcadam, MelMel, tedtell1

I've had 3 Opdivo infusions as well as radiation to all the original sites. Clearly they haven't worked as well as I'd like. Is there any reason I shouldn't be taking the combo? Trying to get a hold of my doctor today as tomorrow is my next Opdivo infusion and I want to really stress the fact that I want the combo but just looking for other opinions on here as well. BRAF+ - Original site was right chest wall with small amount found in Right axilla lymph nodes.

CT CH/ABD/PEL W/ CON
------
5/1/2020 CT of chest, abdomen, and pelvis
CLINICAL STATEMENT: Metastatic melanoma. EOD
TECHNIQUE: Multislice helical sections were obtained from the thoracic
inlet to the pubic symphysis after oral and intravenous contrast
administration.
RADIATION DOSE (DLP): 1453 mGy-cm
COMPARISON: January 2017, 2020 CT scan.
CORRELATION: None.
FINDINGS:
LUNGS/AIRWAYS: Small left lower lobe
metastases are decreased in size and now measure 1.8 x 1.4 cm along the
inferior hilum previously 2.1 x 1.8 cm and 0.9 x 0.9 cm in the posterior
costophrenic sulcus previously 1.2 x 1.1 cm
PLEURA/PERICARDIUM: No effusion.
MEDIASTINUM/THORACIC NODES: Statuspost right axillary dissection.
No new adenopathy
HEPATOBILIARY: No liver mass or biliary ductal dilatation
SPLEEN: 4.0 x 3.1 cm mass in the medial
superior pole is increased in size, previously 1.5x 1.3 cm. Several new
hypodense metastases measure up to 2.7 x 2.4 cm in the inferior pole
PANCREAS: Unremarkable.
ADRENAL GLANDS: New 1.6 x 1.2 cm nodule in left adrenal body
consistent with metastasis.
KIDNEYS: Unremarkable.
ABDOMINOPELVIC
NODES: No adenopathy.
PELVIC ORGANS: Mild prostatomegaly
PERITONEUM/
MESENTERY/BOWEL: No obstructive bowel dilatation, ascites or
peritoneal masses
BONES/SOFT TISSUES: New small lytic metastases in T2 vertebral body
eroding the left anterior cortex, right pubic bone and left iliac wing
OTHER: None.
IMPRESSION:
1. Since January 2020, increased metastatic disease in spleen, left
adrenal gland and bones.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/7/2020 - 7:03pm
Replies by: Anonymous, Julie in SoCal

So I had a mole biopsy done and am waiting on the results, however they were taking longer than usual so I called to see what was going on. They said they called the pathologist to make sure they got them and they did they just had “deeper sections” they needed to look at..this freaked me out. Does this automatically mean melanoma? Why would a normal mole have deeper sections?

B

Login or register to post replies.

Leslie'sHusband's picture
Replies 3
Last reply 5/7/2020 - 10:52pm

It's been a while since I've even been on this forum, let alone post, so I thought I'd post an update. For those who may not remember, my wife Leslie was diagnosed with melanoma (ended up being 3b) on her left thigh, with the sentinel lymph node testing positive in Feb of '14. After three surgeries, the last being a complete lymph node dissection of the left groin area done at Duke Cancer Center in April '14, she's doing well. None of the additional nodes removed tested positive. She had CT scans done every 6 months for the first 3 years, and then 12 months for the next two years. All were clear, at least as far as melanoma is concerned. From the very first scan, the docs noted a small spot on her right lung, but never really mentioned it again. As far as Melanoma is concerned, she has been NED for over 6 years now. We were expecting to be done with Duke after her year 5 scan, but that spot on her lung suddenly became important... It grew almost 50% from year 4 scan to year 5 scan. Melanoma doc referred her over to the thoracic docs for further review. Consult with him gave us two options: Wait and watch, or go get it. They couldn't biopsy it because it was almost dead-center in the lobe of the lung. She had him go get it, but they had to take the upper lobe of her lung to get it. Turned out to be an adeno carcinoma. Lung Cancer. Good news is that it was very small, and it was caught VERY early, before it had a chance to spread. Now, instead of being done with the Duke cancer center, we got to start over with the scans. 6 years NED w/melanoma, 1 year NED w/lung cancer. Next scan will be done locally due to the Covid-19 thing going on, but it will still be read by Duke. All of the doctors and staff at Duke have been absolutely wonderful to deal with.

Dave

Login or register to post replies.

Butterfly74's picture
Replies 13
Last reply 5/8/2020 - 4:58am
Replies by: Butterfly74, fairystar, MLD1973, Anonymous

Hi, I am recently diagnosed with Stage One melanoma on my upper back.

Depth of. 7mm and told I am 1a. I have posted before about my strong anxiety and had some lovely replies.

My doctor said the statistics are about 97% over five years of surviving this and others have replied to say similar. I was trying to hold on to that hope to help me try and get through this as I am really struggling. I wish I hadn't but I entered my pathology details in a melanoma prognosis calculator and it says I only have a 90% chance of survival over ten years. This may still seem good statistics but
this info has has totally terrified me, I don't want to take anything away from the warriors on here who are struggling with worse odds, but I feel like I won't survive this. How accurate are these calculators? One calculator also said I had about a 7% chance of a positive node during a SNB but my doctor only did the WLE as said I didn't need it. I'm scared I'm really at Stage 3, this has taken over my life and I'm not functioning very well with normal life.

How do people cope with this always over our heads. I feel like I'm waiting for the next shoe to drop.
Sorry for the long post, if anyone can help me please.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 5/8/2020 - 5:22pm
Replies by: THMoore, hxcadam, Tsvetochka

I had surgery to remove part of my parotid gland 10 weeks ago. 45 nodes were removed and all were clear. Had 1 node with melanoma within the gland. I had radiation therapy to my neck and finished 10 days ago. Now I have a lymph node starting to swell beside the original incision. My question is , can radiation therapy cause lymph nodes to swell? I appreciate any responses.

Login or register to post replies.

Bubbles's picture
Replies 13
Last reply 5/10/2020 - 12:01pm

Ten years ago today, I had the right upper lobe of my lung removed three days after having radiation to a brain met, all due to melanoma, diagnosed at Stage IIIb seven years prior.
Today, I share these photos and my story, hoping that they provide some small joy, some spark of hope, a message of beauty and love, to those that are hurting. You are stronger than you think. And for all the pain and suffering - there is beauty ~ still.

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2020/04/across...

Much love to each of you. les

Login or register to post replies.

Tsvetochka's picture
Replies 4
Last reply 5/11/2020 - 8:03pm

I am waiting for confirmation from my doctor, but if I'm reading these PET scan results right, they mean NED!!! So, my first question is for those who have reached that point: how did you celebrate? One year from Stage 4 diagnosis to NED?!?!

And then: what kind of follow up should I be expecting after this. We did about nine months of Keytruda, and now I think we're DONE. What happens after this?

Stage 4 in April 2019, NED from April 2020, thanks to Keytruda and lots of prayer!

Login or register to post replies.

SusanMA's picture
Replies 5
Last reply 5/12/2020 - 3:04pm
Replies by: SusanMA, TimCT, Johnjk04

Can anyone recommend a good derm near Fairfield, CT for annual skin checks?

Many thanks in advance!

SusanMA

Login or register to post replies.

Edwin's picture
Replies 0

Some video discussions about melanoma treatments are here:

https://www.onclive.com/peer-exchange/melanoma-treatment-expert-perspect...

You may need to register, but access is free.

Login or register to post replies.

linpark's picture
Replies 5
Last reply 5/13/2020 - 3:30am

Hello.

My mom diagnosed stage 4 in November 2015 at the age of 50.

She recognized some lumps in her lymphatic glands one day while massaging her neck.

At first, she thought it must be thyroid cancer, but it was melanoma with unknown location of primary focus.

(She got rid of a big pimple in the back of her head ten years ago. The doctors assumed that the pimple was the primary focus)

Now she has been having N.E.D since April 2016. Below is the course of treatment she went through.

-

Nov 2015 | She recognized the lumps and diagnosed stage 4. Her first otolaryngologist said it is operable.
He seemed rude and untrustable. (He said literally, "you will die if the operation fails") So my mom moved to another hospital for the second opinion.

Dec 2015 | Her new otolaryngologist said it is inoperable because the tumors are too large and too close to the lungs. She was PD-L1 positive and sent to the hemato-oncology department to try Keytruda.

Dec 2015 | First Keytruda treatment along with Tomotherapy. She felt the lumps became smaller and no more pain in a few days.

Feb 2016 | When her second keytruda treatment and 20 times of Tomotherapy were done, the hematologist-oncologist said "after the third Keytruda, you can opt for surgery". 

Mar 2016 | After the third one, She was sent back to the otolaryngologist.
But he wanted my mom to try Zelboraf for another 4 weeks. Because the operation could be too risky as the tumors are still too close to the lungs.

Apr 2016 | Zelboraf did not work much but she underwent the surgery.
The surgery was successful. When they opened her neck, the tumors were already all dead. What they saw in the scan turned out to be the remains of the dead cancer cells.
Anyway, they removed it all.

Apr-May 2016 | She suffered from chylothorax for 1 month after the surgery. She got lymph node dissection and recovered.

Apr 2016 - May 2020(now) | No evidence of disease.

-

I am sorry that my writing is not refined. English is not my native language.

I wanted to share this story here because I was helped and encouraged a lot by stories shared in this forum back in 2015.

Melanoma is not a common type of cancer in South Korea so I reached here for information.

I hope this helps you in some way. Stay safe and healthy.

Login or register to post replies.

MelanomaMike's picture
Replies 12
Last reply 5/14/2020 - 9:23pm

So, i was in line at the bank cashing our Stimulus check and this guy walks up behind me and ask's "Is this the back of the line"? I said "No, this is the front of the line and we're all standing backwards"..
I dont get out much cuz of my health, the pain, the anemia, and now the 3rd virus that China has released to my country COVID-19 so, i may have been to rough on the guy at the bank haha..Anyways, Here i am family! After all these months, seems like years since i last wrote, iv had a "transfusion" a few weeks ago, i needed blood, im apparently bleeding a tad quicker then i can produce it so, im sure transfusions are in my cards, especially if i keep staying at or below 7.1 on my Hemoglobin (this last time), it kept going down so we handled it. And boy do they make you feel better! Like nite/day! I even thanked the prior owner who donated it! I just wish i can get a grip on pain management, like you all know, my Naproxens have been very good to me thru all my prior surgeries, tumor pain, or those deep nerve pains i use to get back before they pulled out that what, "8cm" Mel monster out my right lung, but now there failing to work on my growing Sigmoid tumor wich is giving us the middle finger in CT scan photos, last scan 2 months ago, it measured 5.0, now its 7.1, just shy of 3 inches, 2.1cm growth in 3 months time, try havin' fun with that in your Sig.. Oh! But! All other tumors have shrank in half! Ill show you my Pathos Report on separate post, atleast something positive is FINALLY happening!! Ive been offered opiate type meds by my Palliative doc but always passed on them, i think its time to try something, ill see him next Wednesday during my infusion, hes been great, really trying his best to hone in on different medications to relieve the constipation caused by the damn monster thats road blocking my waste tunnel! Cenna and Milk of Magnesia (this will be #4), the pain has made me cry a few times, it just busted out of me like the Hoover Dam, heating pads, electric messager, ice packs help but, its all in my head i think, the monster leaves when it wants to leave...Now, the surgery card "is" in my oncologists back pocket but, as he put it with my last tumor, "I'd rather have your therapy (ox40/icos) do the work and not cut you open every time"....I get what he's saying and on paper thats great but, in real time hes not the one feeling this demon eat my guts either. He knows how i feel & has faith i can endure it just a little longer which i think i can, its become my usual norm, including my last bulging painful tumor on my side that was finally taken out, im used to "taking one for the team" just to get to my next scan and see what size he is, then maybe i can have a Quality Of Surgery. My next scan is June 3rd so, fingers crossed..
Well ya'all, i wrote a book and i should have some courtesy and leave some of MRF's storage available for the next person, I love you all and hope your stable at the very least, im gunna browse & catch up, hope to be back soon, i can never promise these days....Mike PS: and thank you to the person who reached out awhile ago, i forgot your name, my wife said it but since then its sliped my mind, always feel free to write her for an update, it makes us both feel good at the right time..

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

Login or register to post replies.

Broersma's picture
Replies 1
Last reply 5/15/2020 - 12:09pm
Replies by: Bubbles

I have Stage IV Melanoma and Mutliple Sclerosis. I am currently on Tafinlar/Mekinis, which has worked well to reduce the tumors (multiplelymph nodes involved). As we all probably have been told, the Tafinilar/Mekinist combo normally is only effective for 9-14 months. I have been on the treatment for almost 2.5 years and, except for the unfortunate side effects, am doing well. Should the melanoma spread to other areas, I am told the next step would be immunotherapy. However, since I have MS, I have been told by experts that I am not a candidate for immunotherapy. I'd like to know if anyone has both advanced Melanoma and MS and, if so, have you had immunotherapy. It's hard to hear that, in the event the cancer spreads, I have not other treatment opnitions. I appreciate your help.

Login or register to post replies.

MrG's picture
Replies 1
Last reply 5/15/2020 - 7:45pm
Replies by: Anonymous

Hi All,

I just returned from my 6-month derm appointment and he removed a small 2mm mole from my back. I've been going to this derm for over 3 years and religiously a follow up every six months. More often than not, something gets cut out during each visit. So far I've had one severely atypical mole which needed to get a WLE and another 4 removed which varied from nothing to moderately atypical. Given the size of the mole, and my history, is this the new normal for me? When do you watch and wait as opposed to biopsy? I didn't get a chance to ask the derm but as someone who doesn't have a family history, not a sun worshipper, and is approaching his mid-40s, do I go for mole mapping or just dread the biannual appointment waiting to get something else removed?

Login or register to post replies.

Shelby - MRF's picture
Replies 3
Last reply 5/16/2020 - 12:28pm

Dear MPIP Community:

I hope this note finds you well. In the midst of this very strange time, the MRF is trying to find ways to keep our community united, supported and educated. I'd like to share a few items we have in the works:

Because all of the April, May and June educational and fundraising events have been cancelled/postponed, we are offering many programs virtually. I know it's not the same as being together in-person, but I hope it provides a bit of normalcy. First, we developed the #CancerHasNoCurve Resource Center, where new educational and support resources will be posted every Monday throughout the month of May (and possibly June). These offerings will be melanoma-specific, not COVID-specific. 

COVID-19 and melanoma information can be found here, and we are planning to host a live webinar on navigating clinical trials during this time, as well as making other resources available. 

Our Miles for Melanoma run/walks are currently being offered virtually, and we would love to have you participate if you are able. 

Each Thursday during the month of May, we are hosting a Facebook Live session called "Ask a Dermatologist". You can listen in via our Facebook page

Last, but certainly not least........in the coming months, we will be updating and overhauling MPIP! This will be a big project and likely won't be implemented until the Fall, but I wanted to give you a heads up. Our hope is that the patient forum becomes easier to navigate, more user-friendly, profiles are easier to update, interactions between users (likes, hearts, virtual hugs, etc.) are implemented, those diagnosed with rare subtypes have a place to connect, and that, overall, the community grows and becomes stronger. If you have ideas, thoughts, comments or suggestions, please send them to me at education@melanoma.org

As always, please reach out if the MRF or I can be helpful to you. 

Best,

Shelby - MRF

Login or register to post replies.

Pages