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
out4air's picture
Replies 15
Last reply 6/2/2013 - 7:39am

Any experiences, suggestions, etc anyone can give to us would be appreciated regarding your experience with taking Zelboraf 240mg. Started at 4 in am and 4 in pm but had bad reaction so now on 3 in am and 3 In pm with 10 mg of prednisone daily. On 3rd day and no problems yet.

I gather this treatment is not a cure, just a drug to stop growth and wait for a cure to be invented, is that pretty much what we are looking at with this drug?

We are in it to win it!

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 6/1/2013 - 8:07pm
Replies by: Anonymous, Lori C, Bubbles, Janner
Research May 28, 2013
 

Four-year Overall Survival Rates 38-50% Using Ipilimumab

 

Ann. Oncol. 2013 May 10;[EPub Ahead of Print], JD Wolchok, JS Weber, M Maio, B Neyns, K Harmankaya, K Chin, L Cykowski, V de Pril, R Humphrey, C Lebbé

TAKE-HOME MESSAGE

Almost 500 patients treated with ipilimumab with a minimum of 4 years follow-up were analyzed in this study. Four-year overall survival rates were 38-50% using ipilimumab 10mg/kg in the first line setting and 20-28% in the second line setting.

ABSTRACT

Background: This analysis was carried out to evaluate the long-term survival of patients with metastatic melanoma who received ipilimumab, a fully human monoclonal antibody that binds to cytotoxic T-lymphocyte antigen-4, in clinical trials.

 

Patients and Methods: Patients received ipilimumab in one of three completed phase II clinical trials (CA184-008, CA184-022, and CA184-007). Previously treated patients were enrolled in all studies, and treatment-naïve patients were also included in study CA184-007. Patients received ipilimumab at a dose of 10 mg/kg in studies CA184-008 and CA184-007, and at doses of 0.3, 3, or 10 mg/kg in study CA184-022. Ipilimumab was given every 3 weeks for four doses, and eligible patients could receive ipilimumab maintenance therapy every 12 weeks. In study CA184-022, patients could cross over to be retreated with ipilimumab at 10 mg/kg upon disease progression. Ongoing survival follow-up is conducted in a companion study, CA184-025.

 

Results: Four-year survival rates [95% confidence interval (95% CI)] for previously treated patients who received ipilimumab at 0.3, 3, or 10 mg/kg were 13.8% [6.1-22.5], 18.2% [9.5-27.6], and 19.7% [13.4-26.5] to 28.4% [13.9-44.2], respectively. In treatment-naïve patients who received ipilimumab at 10 mg/kg, 4-year survival rates were 37.7% [18.6-57.4] to 49.5% [23.8-75.4].

 

Conclusions: These results demonstrate durable survival in a significant proportion of patients with metastatic melanoma who received ipilimumab therapy.

Annals of Oncology
Four-Year Survival Rates for Patients With Metastatic Melanoma Who Received Ipilimumab in Phase II Clinical Trials
Ann. Oncol. 2013 May 10;[EPub Ahead of Print], JD Wolchok, JS Weber, M Maio, B Neyns, K Harmankaya, K Chin, L Cykowski, V de Pril, R Humphrey, C Lebbé

Login or register to post replies.

jaketheflake's picture
Replies 5
Last reply 6/1/2013 - 6:32pm
Replies by: jaketheflake, POW, Mickey n Jo, Anonymous, lunchlady

oh  god forgive me for complaining,my husband has stage 3 melanoma,diagnosed a year and a half ago,interferon,then mets in lung and one tumor in brain,startted ippi a few months ago ,3 treatments,newly discovered 2 tumors in brain,month of steriods,have 3 weeks to go,had cyber knife thursday and friday,  i have noticed in the past month,prior to diagnosis of new tumors,he gets in spastic fits,very mean,it can be scary,he would get a lil mad,but not like this!!!!!   i have been down this road 16 to 17 years ago with my father who had lungcancer that spread to his liver and passed away,my dad was mean anyway,but it was 10X as worse when he had cancer, i am not a mean or unsympathetic person, i cannot imagine how my husband feels or what is going thru his mind, and yes , he has every reason th be mad.   He has recently started being very,very mean in the past month,it is very hard to take,and at times i am scared,does anyone kno or any ideas if its the brain tumors causing this behavior or the ippi?  just wondering if anyone has experienced this themselves or with their spouse?  any advice would be greatful!!!!

Login or register to post replies.

Melissag0624's picture
Replies 6
Last reply 6/1/2013 - 6:06pm

Hello all, 

 My name is Melissa and was just recently DX with stageIIIA melanoma at the age of 27.  It all started with a mole on my upper left shoulder. I had a WLE and SLNB performed and it came back with clean margins and only 1 LN was positive. I have a melanoma specialist that I am seeing in my hometown who has reassured me, and gave me the impression that my chance of survival are good and the chances of reocurrance are low. I did go see another melanoma specialist in my hometown for a second opinion only to find out that these two doctors work particularly close ( they used to be in the same office) and he agreed with her recommendations. I am currently on a clinical trial that monitors the lymph nodes by ultrasound rather than doing the removal of the lymph nodes in the effected area. My concern is this: I feel like I didnt get a fair second opinion because these doctors work so closely together and often share patients. My mom offered to send me to the Mayo clinic in minnesota and in a way I feel like it is over kill to go because I feel like they will just tell me the same things that my other doctors have said.  After the SLNB came back positive, I did have a once over, MRI of brain, CT scan of Pelvis and abdomen with and with out contrast. ( there were two incidental findings that are not related to melanoma--UPJ obstruction and a hemangioma on my liver) So I guess I would like to know what others would do in my position. My mom thinks I am under reacting and I feel like going to the mayo clinic is over reacting. ???

 

Thanks,

Melissa 

<3 Melissa

Login or register to post replies.

mark1101's picture
Replies 1
Last reply 6/1/2013 - 5:13pm
Replies by: Anonymous

Had my last infusion in the trial of ipilimumab for Stage III just about 3 weeks ago and still feeling fine...yay!  Some trouble with skin rash rearing its annoying head following each treatment, but prednisone and atarax seem to stop that problem in its tracks.  Took 4 campazines the entire 12-week period so not much trouble with GI tract in general.  I conasider myself lucky as to the my system weathering the drug well.  Now the acid test...did it keep the melanoma at bay as effectively...had a clear scan going in after lymphadectomy.  Next scan is scheduled for next Thursday so am hopeful that will also be clear.  Keeping my fingers crossed and praying about that.  Sorry to blather on, but wanted to share my good news with all of you terrific people on this board.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 6/1/2013 - 5:10pm
Replies by: ecc26, mark1101, hbecker, Janner, Anonymous

Hello,

Thank you for reading my post. I am kind of at a loss and feeling very scared. I was recently diagnosed with melanoma on my head/neck, and have since checked every other square inch of my body. Well, I discovered another spot, (getting it looked at this coming week) it has all the characteristics, and is pretty well raised. It is on my left side love handle.... I remember it being there a long time ago (a couple years) and it started as a small freckle..

So here's my question:

Not too long ago, (maybe 6 months, during the winter) I went through a period where I was really sick. Both sides of my groin nodes were huge, hard, swollen, and too painful to even walk... This has since subsided, but have continually maintained other symptoms of: Abdominal pain and cramping, extreme bloating and gas, big time gain in abdominal gurth (like not fat, but bigger around just in the abdominal area), had a week of pure constipation, now am having semi regular BM's, but loose and thin, (maybe a tiny bit of blood here and there, in the crevices of the stools, not all the time), decreased appetite but increased weight, extreme fatigue, headaches, sharp pains behind my eyes (almost every day), pinched nerves and muscles throughout, but especially in my back and shoulders, and extremely abnormal vaginal bleeding...seems like every day... there are more days of bleeding than not!!

This has all become frustrating, and worrysome. I try not to make a huge deal of it, because maybe I wouldnt notice these things is i DIDNT have melanoma on my mind, but there are a ton of new symptoms just within the last 6 months or so...

I AM getting this new spot checked out within a week, but just curoius in the meantime if anyone else thought this was outrageous, or possibly all in my head.... 

 

Help!?

Login or register to post replies.

tony's picture
Replies 35
Last reply 6/1/2013 - 4:00am

Hi Everyone,

 

I'm new here but I am already gaining knowledge and support from the many posts on the forum. Its great to see so much support and empathy. I hope that as time, and my knowledge, progress that I will be able to contribute as well.

 

I was diagnosed with metastatic melignant melanoma on 22nd Dec following a Lymph node biopsy. I am now recovering from a full Lymph Node Dissection (LND). In total 3 lymph nodes in my left axcilla were affected. When the LND was analysed they found no evidence of melanoma in the surrounding tissue. I have not yet had a meolecular test for BrafV600 or C-Kit mutations but will be asking my onc to arrange this when I see him next.

 

So, the dilema... Interferon or Watch & Wait? I apologise if this is repetitious from previous posts but I wanted to share my thoughts. The summary of all the trials conducted on High Dose Interferon (HDI) appears to be that it benefits a small number of patients by extending the Relapse Free Survival time by an average of 7-9 months but has no effect on Overall Survival time compared to no further treatment after surgery. Is it worth a year of being quite sick on the off-chance that I might be in the small number of patients that respond? If I do respond is the treatment year factored into 7-9 months of RFS I might gain? I'm not sure I want to risk feeling sick for a full year of my remaining life when its almost certainly not going to mean I live any longer. I would like to be able to enjoy every day to the fullest extent. One significant study concluded that "interferon did not reduce the risk of the cancer coming back. It was no better than having no further treatment after surgery."

 

http://www.cancerresearchuk.org/cancer-help/trials/aim-high-a-study-of-a...?

 

I am doing everything possible with diet and natural therapies to make my system as inhospitable to cancer as possible (including eating organic, avoiding all sugar, and keeping my system in an alkaline state) but traditionally I have always favoured the alopathic route. However is HDI worth considering? Maybe the initial one month of IV treatment but not the 11 months of SC injections as a compromise?

 

Your thoughts and opinions would be really valuable as I'm really struggling with this decision.

 

Many thanks,

Tony

Never give up!

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 6/1/2013 - 12:27am
Replies by: Tennisgrl, jcmp

I have had 4 treatments of IPI followed by 6 weeks of radiation followed by 15 taxol/ carboplatin treatments.
I am now stable by ONC .
Looking for anyone with similar history to share information.
Thank You

Login or register to post replies.

Littlea41's picture
Replies 1
Last reply 5/30/2013 - 10:17pm
Replies by: Janner

Hello. I was diagnosed with melanoma back in march an found out I was pregnant 3 days later. We lost our son from a placenta abruption at 16 weeks. So far there are no answers, nothing pointing to what caused this. I'm just curious if anyone has heard of this happening to melanoma patients. I'm still waiting in the pathology from the placenta (its been over 3 weeks) which tells me they either lost the sample or they found something bad and need to confirm or do other tests.

Any help on this topic would be greatly appreciated as I can only find a couple publications on melanoma and the loss of a pregnancy.

Andrea

Login or register to post replies.

Yesterday’s FDA approval of two new treatments for metastatic melanoma is exciting news for the melanoma community. But, we still have much work to do in terms of providing additional treatments for people fighting advanced melanoma. If you are interested in helping the Melanoma Research Foundation call attention to these important issues by sharing your story with the media, please take a few minutes to complete a short survey by visiting: http://www.surveymonkey.com/s/6JY5R8C.

Thank you for your consideration.  The MRF will be in touch with you as media opportunities arise that match your experiences.  If you have any questions about this survey, please contact the MRF’s communications manager Lauren Smith at lsmith@melanoma.org or 202-347-9675. 

With many thanks,

The MRF Team

Login or register to post replies.

Who_am_i's picture
Replies 3
Last reply 5/30/2013 - 5:17pm
Replies by: ecc26, NYKaren, POW

I had my biopsy results 5/22. My first oncologist/ surgeon team meeting is not until 6/5. My derm told me I would be fast tracked for SNB and excision. Now that is not happening till who knows when. I know I'm supposed to be patient but must admit it is starting to get harder.

Thanks,
Patti

Login or register to post replies.

ecc26's picture
Replies 12
Last reply 5/30/2013 - 4:49pm

Hello everyone,

I'm 31 years old and was first diagnosed with melanoma from a mole on my upper back in Jan 2011. At the time I was a stage 3 with only 1 lymph node testing positive for any melanoma (after complete lymph node resection of the right axillary (armpit) area). I completed a full year of interferon and just prior to the end of that therapy found a mass in the scar tissue from the lymph node surgery. That was removed (along with any other tissue that might have lymph nodes in it that they could find) in July of 2012. The mass was melanoma and they couldn't tell if it had been a lymph node or not by the time they took it out. In November 2012 I found (and biopsied) a very small, irritated mass on my left lower abdome that turned out to be melanoma and that put me into stage 4.

A rush of imaging and other testing got me ready to start IL2 in December 2013, which my team of local oncologists, specialists at Roswell Park in Buffalo, NY and myself decided was the best first option. My scans showed only 3 mets, all subQ, with 2 tiny (questionable) lung mets, but by the time I finished my first week of IL2 I had found at least 4 more subQ's. I had severe side effects from the IL2 and they cancelled the second week, opting instead to rescan in one month to determine if there had been any benefit. After some arguing on my part about the scans (there had been some apparent progresstion since the previous scan, but I had found tumors prior to the start of IL2 that had not been visible on the previous scan so I argued for another try with the IL2) I checked back in for a second round. I tolerated round 2 much better than round 1 and was able to complete both weeks. 8 weeks later (march 2013) the scans showed that with the exception of 2 tumors (both subQ) ALL of my other tumors had either shrunk or dissapeared. My husband and I were thrilled and happy to check in for round 3 thinking that we had gotten this thing under control.

By the end of the second week of round 3 I could feel that the last 2 tumors that hadn't shrunk on the scans were shrinking and I was on coud 9. Less than a week after I got home from the hospital after round 3 though I had a very sore area over my left pectoral muscle that made me worry. 2 days later I had another sore spot on my lower abdomen. I made an appointment and long story short I now have over a dozen new subQ tumors- several of which have appeared with very large bruising. More than half of them are concentrated in my left breast. I have several questions in my search for information:

1) Has anyone else had an apperant good response to IL2 then had a relapse (and if so, does anyone know of anyone that relapsed so fast)?

2) How common is it to have pain/bruising with the appearance of subQ mets? I've had several subQ's before, but never the inflamation/bruising. Does this mean it's worse this time?

3) I've been told that I have to have failed Ipi before I can begin a clinical trial, but I'm really worried that with the speed tumors are popping up I won't survive the 6 months it takes to determine if I've failed- any thoughts from anyone that has tried Ipi?

4) I think it's odd that so many are concentrated in my breast- has anyone else experienced this "clustering" of tumors? Also, of all the tumors, there are only 2 on the right side of my body- all others are on the left- again has anyone else experienced this sort of "one sided disease"? I had also noticed during the IL2 that the tumors on the left side of my body (the subQ's that I could feel) seemed to respond slower/less than those on the right side.

 

I had a CT late last week and I get the resluts to day- I'm more nervous than I think I've been for any of my appointments ever. 

 

UPDATE MAY 28

Thank you all for your replies so far. Many of you expressed a need to be informed and active in the decision making process and I couldn't agree more. It's your body and your future and you need to have a say. Rest asured, I'm no push over when it comes to medical anything and I obtained my veterinary degree (which many people, physicians included, don't realize is nearly idenitcal to a human medical degree and certainly just as expensive) just 6 months before my diagnosis and since then have been reading all the same information as any doctor I've been speaking to. For the most part they enjoy my medical expertise as it allows them to discuss factors and options in greater detail than they often are with other patients, but it's taken some getting used to for them with regards to me insisting on seeing all of my imaging for myself (not just relying on reports, etc and I'm entirely unsatisified with human pathology reports- there's almost no usable information in them in comparison to what we get for veterinary path reports) and there have been times when I've argued with their opinions. I'm a regular reader of the research and am very familiar with how trials work, etc. I'm very comfortable with the science and frankly hadn't posted anywhere before becuase my brain is much better with studies and statistics, but I was running into trouble trying to track down statitics to answer some of my questions about what was happening to me now. 

With regard to the BRAF mutation, at some point late in 2012 (right around the time I started the IL2) I was told that I had been tested for the BRAF and was positive for the mutation (meaning I am eligilble for the BRAF inhibitors), but there seems to be some trouble tracking that result down, making me wonder if I really was tested or if someone mis-spoke when they told me I was positive. I generally insist on getting copies of all my test results (it helps me process to see them for myself and it gives me a nice portfolio to take with me to specialists, etc) but dropped the ball on that one- should have gotten a copy at the time. 

My appointment today was as good as it was likely to get, I suppose. The CT showed that so far the only new tumors are subQ, although I still need to get a brain MRI to rule in/out any cranial mets. I still have the 2 small lung mets that were present since around the time I started IL2 but they haven't grown and the tumor in the body of T10 that was causing me so much trouble in February has shrunk even more than it had in my scan one month ago. In addition, with the exception of 1 tumor (which is now half the size it was) all of the subQ mets from before/during the IL2 are gone. So It appears that the IL2 did do some good, just not enough/not as much as I and my doctors thought it was. Given these results and the realization that the anti-PD1 trial being opened by the specialist I had been seeing was randomized with chemo in addition to requiring trying Ipi first we (myself and my local oncologist) have decided to schedule an appointment at Dana-Farber in Boston, MA to discuss possibly joining one of their trials, etc. I have to wait another 1-2 weeks anyway before starting either a trial or Ipi since I'm so close to my last round of IL2 so it makes sense to maybe take a look at some other area cancer centers and see what's available for me. I'm also curious about the T-cell therapy trials, although I haven't had time to research the trial results, etc much yet.

Thanks again everyone for posting and for the info about your experiences and trials- it's really not that easy to research what trials are available or rather what the mechanism/action of the drug being tested is.No one wants to divulge their reserarch before it's patented, but it can be hard to sift out which are the PD1 and which are other less promising therapies.

Login or register to post replies.

Hi,

I have a friend who is dealing with Brain Mets. Previous mets were treated with radiation but know seem to be growing again so he needs a neurosurgeon.

He lives in California but would travel anywhere to be treated by the "best" neurosurgeon.

I would appreciate any recommendation or feedback on your experience with your Neurosurgeon.

Thank you for your help.

James

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 9
Last reply 5/30/2013 - 12:12pm
Replies by: Anonymous, michelleg, BrianP, JGreen, kpcollins31, hbecker, Janner

Just found out a family member has stage iv melanoma - mets in lungs, liver, and lymph. We all live in North Carolina and had an initial visit at duke (not very impressed with staff there so far - does anyone have experience? I cant get over how long it takes to schedule anything). They recommend il-2 as first line treatment followed by ippi (or something like that) if il-2 doesn't work.

Here's my question: is that standard treatment? Is it worth getting a second opinion? My understanding is that duke has the best melanoma treatment in nc - wondering if its worth getting an opinion from another oncologist.

Sorry! This is all still new...

Login or register to post replies.

Becky's picture
Replies 2
Last reply 5/30/2013 - 8:46am
Replies by: Brendan, Phil S

But who  is counting ( I am!)

My son was diagnosed in July 09 just beofre his 21st birthday, oral melanoma (toungue) one postive node, year of interferon, a few scares a long the way.

Pet scan yesterday, NED! I have been extra nervous becuase his oncologist decided scans once a year were fine ( he is not a melanoma specialist) so it has been a year since his last one. Plus, next week he is moving to NYC because he got accepted to a fellowship that will keep him there (teaching math) for 5 years..sad he will be 3000 miles away but excited for him.

I really want to thank all of you who gave me support directly or indirectly..I dont post often but I read daily

Keep fighting

Becky

Login or register to post replies.

Pages