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

Hello Everyone,

This week turned out to be a scarey one.  I'm glad its on the up swing right now. 

I saw my Doctor Monday after hearing about how my cousin died who  had melanoma in 2005, she also had pericarditis.  I don't know why this isn't something that is brought up to the melanoma community.  I've read a few articles about it on the net but not much more.

Anyway, the doctor checked the lymph node he found in my neck that is a little large.  He wanted me to get a pet scan, but I had just come off of having strep throat so I wasnt exactly wanting to go through a pet scan.

The only arm they can use on me for blood and IV's is just about gone.  The last time I was in the Hosptial in July for the pericarditis they couldn't find a vein in my arm, did an ultra sound of my arm and found there only small veins attached to nerves.  So they used my hand.  My other arm has had surgery and lymphnodes were taken out.  So going for tests is a very cumbersome thing to do and painful. 

I told him how my cousin had died, 30 years out, all of a sudden mets in her lungs and pericarditis in her heart.  She was overweight, like I am.  Maybe edema.  Who knows.  So we discussed it, he checked the node and it is bigger but only slightley.  I'm to go back to him in November for another check up if its bigger I'll get the scan

So Wednesday I did what most people do to keep where they live clean and I was going up and down the stairs and I just did not feel good.  On Thursday, My chest was in a tremendous amount of pain and I took the med they gave me colchocine and called the doctor to ask how long I should wait for it to work.  He said about an hour.  About an hour got worse, so he called in a prescription for prednisone lots of it.  I took that and about 11 oclock at night I started feeling better. 

A little throw back here.  When I when on high dose interferon and then went off I became allergic to just about every NSAID there is.  And Colchine is a type of NSAID.  All the other ones aspirin, ibprophen, I have a terrible allergy, which I did not have before Interferon. 

So I took the cochicine on Thursday along with my prednisone and I started feeling very flush, I went into the bathroom and my Face was burning red and my chest was tight and was also very red.  I was having a reaction, probably to the colchine.  I called th doctor but he was out, I did not want to go to the hospital, so I started taking benedryl, first two then in an hour another one and I started to feel better and my morning the swelling of my face and chest was gone.  Now I cannot take the only drug available to combat the pain and inflamation of the sac around my heart.  Great!  I'm 29 years out.  I'm wondering if its getting to be my time. 

Well the good new is for all  you people out there with this disease is that there are people out here who have lived with it for  years.  I think Charlie on the board is another long lasting patient of this disease.

All in All have confidence and think positive.  I just always considered myself as a warrior not giving up. Since 1984.  That and my faith always helped me along. 

Thank you for reading.  Best Wishes. 

Login or register to post replies.

MattF's picture
Replies 3
Last reply 10/7/2013 - 12:00pm
Replies by: MattF, kathycmc, Cindy VT

SO Pathology report came back...please let me know what you think as I have ne real experience with sizes etc ...

It reads a little confusing, but it looks like 

-2 Nodes out of 60 positive for Malignant Melanoma , largest is 2.0x2.0x1.1 cm tumor (I believe these are the two that made lumps on the side of my neck)

-also had parotid gland and parotid salivary gland both of which were neg for disease, (however one of the nodes was within the parotid glad)

-there is no apparent extranodal extension

-resection margins free of malignant melanoma

 

SO my basic questions are:

Stage IIIB?

and is a 2.0cm malignant melanoma tumor within a node big? 

Login or register to post replies.

hi -- my name is Ursula -- I've posted a few times over on the MIF forums, and may have met some of you there.

I've got stage IV melanoma with several abdominal mets that turned up on my follow-up CT scans back in June. I'm 38 and have three young sons (2, 4 and 6).

I'm determined to get to their high school graduations. (stats be damned..!)

I'm part of the BMS phase I open-label trial looking at the combo of Ipi & Nivolumab (BMS's anti-PD-1 inhibitor).

I see Dr. Wolchok in NYC, though I live in Canada and am flying back & forth. 

I'm at week 11, and so next week I go for my fourth combination treatment. My scans are at the end of Oct.

I'm a bit anxious, because I've basically had no side effects at all, and I know that some studies have suggested that responders to Yervoy tend to have worse side effects (grade III/IV immune reactions)

Does anyone know if this has turned out to the be case? Is it crazy to be wishing for side effects? I just want some indication that these meds are working!!

I've had a little fatigue -- but who can sort that out from airplane-related-tiredness and being with little boys all day?! And I have a few little red spots on my forearms that might be related. I had some diarrhea a couple of weeks ago that I was all excited about (!?) - but it went away as fast as it came. 

One promising thing is that I used to have a longitudinal brown stripe on my right thumbnail, which no longer goes all the way to the base of my nail. (the new-growth part of the nail is clear) So I pray that this is my own little bioassay and that the same thing is happening in my abdomen. (if anyone wants to see a photo of the nail on my personal blog, it's ursulasmelanomablog.wordpress.com http://ursulasmelanomablog.wordpress.com

(As an aside -- I don't know how to get rid of the inaccurate link to the blog in my signature! How do I access my profile on this site?)

I know that Maureen & Brian are on this same trial -- I'll look forward to hear about others' experiences.

all the best,

Ursula

Login or register to post replies.

Mat's picture
Replies 14
Last reply 10/13/2013 - 11:39pm

Hi Everyone,

Following a Stage IV diagnosis in July, and in light of a heavy tumor burden (particularly in liver), I started on the GSK combo at the beginning of August.  Within several days I felt great and, within a few weeks, my labs were normal.  For example, at one point in July my LDH was 600--now it is around 150.  Yesterday, I had my 8 week scans.  While I don't yet have copies of the reports, the rough stats are that my tumors have reduced in size in the range of 50% (liver) to 70% (abdomen)--and no "new" tumors.  Some small tumors (e.g., lung nodules) have even disappeared.  Also, a brain met that I had gamma-knifed in mid-August has disappeared (it had also shown reduction in size from the GSK combo previously).  Amazing drug combo when (and while) it works.

Separately, thanks again for all of your informative and insightful posts.  I've learned so much about treatment options (for later) from your posts.

Mat

Login or register to post replies.

JoshF's picture
Replies 9
Last reply 10/5/2013 - 9:09pm
Replies by: JerryfromFauq, JoshF, Linny, ecc26, Anonymous, POW

So my oncologist suggested aggressive treatment for lung nodule. Thought is that it got there through the blood. Only thing that lit up on PET. So I agreed to enter the trial and got randomized to ipi first. I start on Wednesday. 4 infusions over 12 weeks. A small break then followed by HD IL-2. Anyone participating or have any knowledge of the study? It's sponsored by Prometheus Labs. Kinda wondering what to expect. I see well respected melanoma specialists and they feel this is best course of treatment. Thisis  all a bit overwhelming.

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 10/5/2013 - 8:16am
Replies by: Mat, Anonymous, ljhncj12345

Could bone metastases present as a mechanical pain: movement = pain, no movement = no pain?
I read that the pain is usually felt mostly during rest or at night. Coulf someone describe the symptoms of bone metastases, please?
 

Login or register to post replies.

JoshF's picture
Replies 15
Last reply 1/1/2014 - 9:10pm

I got the call from surgical oncologist on lung nodule today. It was positive for melanoma.He is postponing surgery indefinitely and called medical oncologist. So, I have an appointment with medical oncologist this afternoon. Not sure what this fight is going to look like but whatever it is I'm ready. What are my options? Not sure if lung met is braf positive or negative yet....though reoccurrence on cheek was negative. Advice on any questions I should ask.....as you know my brain is scrambled.

 

Josh

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

brooke's picture
Replies 3
Last reply 10/5/2013 - 10:01am
Replies by: brooke, POW, Anonymous

Hello again!

I am very relieved to be on the forum with my husband's revised diagnosis from Stage III b to Stage I a.

I am so thankful for all the help and support I received when I thought we were dealing with a more advanced stage of the disease. My heart goes out to all those suffering from this disease. 

Since my husband's misdiagnosis, I feel we have been written off by the doctors at Kaiser Permanente.

I understand the need for an oncologist may no longer be necessary, but I know proper follow up is.

If it wasn't for my medical background and this site, I may not have know what proper follow up entails.

I want to confirm with those of you who know more and care more than the docs at Kaiser that I am doing the right thing.

I have him scheduled every 3 months for a dermatoogy visit. I assume they'll do lymph node checks at that time.

On my husband's PET/CT scan, a few small nodules showed up in his lungs. At the time it concerned them a bit, but since the new diagnosis, they've said nothing about it.

I emailed his PCP who checked with oncology who said yes, follow up with a chest CT in 6 months. Hmm.. glad I asked! I don't think anyone would have told us.

Also on his PET scan, an area behind his tongue lit up. An ENT did a scope an said it was inflammation. No info on follow up.

After talking with his PCP, he said yes, they want follow up in 3 months. Thanks.

I certainly am aware that after reading everyone elses stories that Stage I is not nearly as frightening and hopefully even curable with the wide excision. But I still worry. I now have real trust issues with these docs and feel if I don't take action, no one will!

I would love to have him see a melanoma specialist, but it is $600 out of pocket. We will certainly do that if necessary. 

I guess I'm looking for a little guidance!

Thank you all again!

Brooke

Login or register to post replies.

Replies by: UrsulaZ, Maureen038, Anonymous

My husband had his second set of scans at NIH for the ACT trial. He is considered stable, but two of his lung nodules have grown about 4 mm. The lymph nodes in his arm have shrunk. The doctors feel the two lymph nodes in his arm may not be melanoma. It's wonderful that there are no new nodules and it is basically in his lungs, but it's also like getting on the roller coaster again. He is now enrolled in the phase 1 Yervoy /nivolumbab and hopefully today we will find out when he will actually begin the drugs. All of the doctors feel this is the best treatment to do next. I'm just wondering if anyone has done both of these trials or just have an opinion. Thanks for any help!

Login or register to post replies.

Aussielyn's picture
Replies 0

Just wanted to thank Josh & John for their replies to my post on 27/9 . Sorry it has taken me so long but I had trouble logging in & have only just rectified the problem.
In the mean time after resuming trametinib for 2 days & then just 3 doses of the combo after that, I again ended up with fever mouth ulcers & terrible nerve like pain up my legs & in my feet . I was walking like a sick 90 year old! Once again!!
So I am off drugs again for another week when I'll again resume on 5 days of trametenib before adding reduced dose of dabrafenib .
Docs not sure if it's the trametenib or the dabrafenib that's causing me grief , however thinks it's the dabrafenib. It's trial & error to get the right dose my body can tolerate. Dr thinks we started back too soon the last time! The thing is no one knows much about this medication where I live - that's why I'm so interested to hear of other peoples experiences. I really want the drugs to work as I'm not sure what alternatives will be available. I'm wondering if anyone has had similar side effects - & a positive outcome. I'm due for a scan in a months time so really need to get the medication continuing to work.
Thanks for reading & do hope your politicians get some resolution to their differences.
Hope everyone is doing well & keeping the fighting spirit alive. I know it's not easy sometimes when you're doing it really tough but I guess we all have to keep positive.

Take care,
Lyn

Heal with every inhalation and let go of cancer with every exhalation.

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 10/4/2013 - 8:02am
Replies by: Rocco, Anonymous

I just happened to come across this article online this evening

==============================================================

Pooled Analysis Reinforces Long-Term Survival Benefit With Ipilimumab

Andrew J. Roth

Published Online: Wednesday, October 2, 2013

- See more at: http://www.onclive.com/conference-coverage/ecco-esmo-2013/Pooled-Analysis-Reinforces-Long-Term-Survival-Benefit-With-Ipilimumab#sthash.ALT7vh1t.dpuf 

Results from a pooled analysis of data from 12 studies has demonstrated a long-term survival benefit that extends through at least 10 years for patients with advanced melanoma treated with ipilimumab (Yervoy). The results were announced by the drug’s manufacturer Bristol-Myers Squibb on September 27 and were presented at the 2013 European Cancer Congress on September 28. This study, which included 2 phase III trials, 8 phase II trials, and 2 retrospective trials, represents the largest OS analysis to date for patients with advanced or unresectable metastatic melanoma treated with ipilimumab. The analysis also included both patients who were previously treated (n=1,257) and previously untreated (n=604).“This pooled analysis is encouraging, particularly when considering that metastatic melanoma is one of the most aggressive forms of cancer and historically, average survival was just six to nine months,” said F. Stephen Hodi, MD, Department of Medicine, Harvard Medical School, Dana-Farber Cancer Institute, in a statement. In the 1,861 patients treated with ipilimumab, median overall survival (OS) was 11.4 months (95% CI: 10.7–12.1). Researchers noted a distinct plateau in OS at year 3 that extended through year 10, independent of line of therapy, ipilimumab dose, or maintenance therapy. The 3-year OS rates were 22%, in the entire study population, 26% for treatment-naïve patients, and 20% for previously treated patients. The authors of the study wrote that these OS data should be considered as a benchmark for future melanoma therapies, as they represent a large benefit in a difficult-to-treat disease.“This pooled analysis reinforces the long-term survival data seen in the individual studies and provides additional insight into the overall survival of metastatic melanoma patients treated with Yervoy,” said Brian Daniels, senior vice president, Global Development and Medical Affairs, Bristol-Myers Squibb Company, in a statement. “The durability and consistency of long-term survival observed in this analysis is encouraging as we continue to advance the research and development of our immuno-oncology portfolio.”In each of the trials in the analysis, patients received ipilimumab at different doses, with the majority of patients receiving 3 mg/kg (n=965) or 10 mg/kg (n=706) every 3 or 4 weeks. Most of the studies provided the option for eligible patients to receive ipilimumab retreatment or ipilimumab maintenance therapy. Safety data were not included in the analysis. Adverse events attributed to ipilimumab, which are typically mechanism (immune)-based, were managed in individual trials with protocol-specific guidelines, including dose interruption or discontinuation and the administration of systemic corticosteroids. The FDA approved ipilimumab 3 mg/kg monotherapy in 2011 for patients with unresectable or metastatic melanoma. Ipilimumab is now approved in more than 40 countries.

Schadendorf D, Hodi FS, Robert C, et al. Pooled analysis of long-term survival data from phase II and phase III trials of ipilimumab in metastatic or locally advanced, unresectable melanoma. Presented at: European Cancer Congress 2013 (ECCO-ESMO-ESTRO); September 27-October 1, 2013; Amsterdam, The Netherlands. Abstract 24. - See more at: http://www.onclive.com/conference-coverage/ecco-esmo-2013/Pooled-Analysis-Reinforces-Long-Term-Survival-Benefit-With-Ipilimumab#sthash.ALT7vh1t.dpuf 

Luke 1:37

Login or register to post replies.

As a result of the government shutdown, NIH is no longer accepting new patients into existing clinical trials. Have you or someone you know been impacted by this? Have you been turned down and/or unable to enroll in a trial? If so, email media@melanoma.org. The MRF feels media coverage around the shutdown needs to address the negative impact on melanoma patients, and your story is needed.

Thanks,

Lauren

MRF's Communications Manager

Login or register to post replies.

Tina D's picture
Replies 6
Last reply 10/9/2013 - 10:02am
Replies by: Tina D, aldakota22, BrianP

Hi guys,

I had my fouth dose of Mercks anti Pd1 on Monday. Feeling pretty well overall. I will have scans with my next infusion appt in 3 weeks. Will update then!

Tina

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 10/5/2013 - 8:35pm
Replies by: Cindy VT, Anonymous, JerryfromFauq, Tina D

Without the political statements or opinions of Democrats vs Republicans, etc - can someone please provide an overview on what is happening at NIH specifically due to the shutdown??

Luke 1:37

Login or register to post replies.

Hstevens0072's picture
Replies 8
Last reply 10/7/2013 - 11:37am
Replies by: Janet Lee, Hstevens0072, Tina D, Anonymous, NYKaren

First set of scan results received today - and it's working! Many small tumors are no longer showing up on the CT scan and the large tumor in my right lung is 60% smaller. All this after four infusions of Anti PD 1. I hope this boosts spirits and gives hope to others.
I am so grateful to God, and big pharma.
Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

Login or register to post replies.

Pages