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 all

on the last meet with my wife oncolog i understood that he would like to study the carachteristic of folks who responded to Z for a long period and put the stick at 18 month (still far target for my wife btw). I would like to report him how many of you had progression or the drug stops to work  after this point. Maybe it is useless and he has this statistics, but it is for free.

TY for your contribution.

Antonio

Login or register to post replies.

brittanyx's picture
Replies 2
Last reply 11/5/2014 - 8:06am
Replies by: akls, brittanyx

A month after I started interferon I had 2 periods in a month. And no I haven't gotten one in a month. Can interferon mess with your menstrual cycle?

Login or register to post replies.

I was hoping everything would be shrinking and the pd1/radiation combo would give a good story of how they worked great together for me. True to form today Dr. Linette my local doc gave me yet another bad report. The only good one I've ever got was in August at Mayo. But I must agree with what he is seeing, what I'm feeling and his treatment recommendations.

They weren't able to compare it to the Mayo scan in August but with their April scan.

What really suprised me is the T12 and L2 they radiated says "There is persistent intense uptake with the T12, L2 and L4 vertebral bodies." I assume that means the radiation didn't work? Radiation was completed 6 weeks ago. If that's so then I wonder about my head because all the report said was it was new because they compared to the April scan where it didn't exist yet. I was thinking about seeing if they could radiate my knee and maybe my pelvis but now I dunno. About 10 days ago my knee started hurting like crazy making it very difficult to walk. The scan shows a tumor in my knew and the growing one in my pelvis which also hurts a lot.

So overall stuff has grown although some stuff has shrank. The huge one in my shoulder still has the necrotic center but the tumor has grown and changed shape to 11.5 x 7.1 cm from 8.7 x 7.7 cm in August. Other stuff grew too.

So I dunno. I'm very depressed. He did talk about ERK or ERG trial. Whatever it's called. It's like BRAF just further down the gene chain and is phase 1. The BRAF stuff never did anything good for me (ie: never shrank nothing) so I doubt if that would work for me either. Although the taf/mek combo did keep a lot of tumors from growing just never shrank stuff. Neither did zel.

He also mentioned NIH immunotherapy (ie: TIL ACT stuff) which was already my plan B so I called the number they gave me and left a message. I dunno if I'll get in. They said it is very difficult to be accepted. With my leg acting up I just dunno. Maybe this latest dose of PD1 will make it better.

So that's my news. Since some things are still shrinking that means the PD1 is doing some good so they are keeping me on it. So I got my 9th dose today.

I'm sorry. I've always tried to be uplifting with a never quit attitude. Now I'm just very depressed and having a hard time taking all this in. I'm trying to focus on the good Rosenberg stuff. Like it's basically a 50/50 chance. 1 in 10 are cured long term. 4 in 10 have long term durable response. At least that's what I seem to recall I read. I know we've all been through so much. I just dunno if I can dig even deeper for one final treatment. Maybe I'll feel better tomorrow. It's been a rough couple days with scans yesterday and this news and stuff today. May Jesus grant me the strength and courage and whatever else I need to get into and through Dr. Rosenberg's treatment.

Artie

Login or register to post replies.

Gordknight's picture
Replies 2
Last reply 11/5/2014 - 8:26pm
Replies by: Gordknight, Janner

Got back from the WLE on my neck for my stage 1a melanoma.  Praying that this is all behind me now.  Have an appointment on monday with the surgeon to follow up and get the results if they are back by then.  I wanted to thank everyone for their support in my earlier thread.  Especially to Janner for being the voice of reason in a lot of threads.

Now I just need to stay offline and stop reading stories about stage 1a'ers that progress to IV within a few years. 

Login or register to post replies.

Anonymous's picture
Replies 12
Last reply 11/11/2014 - 10:08am
Replies by: oldblue, Squash, Ginger8888, Annalive, Anonymous, JustMeInCA, Janner

My father had his primary melanoma tumor removed in May 2014 by his general practioner. The spot was on his trunk. Once the biopsy confirmed it was melanoma, he was then referred to a general surgeon to have larger margins removed. In hindsight, he should have been referred to a medical oncologist for surgery rather than the doctor that did the surgery. At his first visit to a cancer center he was told the stage was a 'risky' IIC. On the Breslow scale it was a Stage V and a Stage IV on the Clarks scale. At the first visit, the oncologist told my dad the treatment options for melanoma were not great. The treatments often have harsh side effects without a lot of proven success stories to show they are succesful in extending life. Last month he had an axillary dissection to remove lymph nodes that were detected in a recent scan (the lymph nodes were on the same side as the orginal tumor and under the armpit area). The biopsy of the lymph nodes were positive for 3 lymph nodes with one being fairly large. His cancer is now classified as a Stage IIIC.

Last week he had a visit with the radiation oncologist where it was suggested he has radiation on the trunk where the original tumor was removed extending up to where the recent lymph nodes were removed. He was also told the chance of the melanoma spreading to the brain was fairly likely. He meets with the radiation oncologist later this week as well with the chemo oncologist to discuss treatment options.

My father is in 70's. He is still active (despite having a bit of a hard time recovering from the two surgeries listed above). He also has the following health concerns: high blood pressure, enlarged heart, hardening/calcifications of the arteries, gallstones, cyst on a kidney, colon diverticulosis, background of pulmonary emphysema, small lobe on lung (too small at this point to determine on the PET scan if it's cancer) and bronchiectasis.

While I wish my father would get a second opinion (going to a hospital where there's more of a focus on melanoma), I don't believe he will. When I read the messages on this board, there are obviously treatments that are working for lots of people and I would like to think there's a treatment option that is suitable for him.

I'm curious if any of you have relevant information for someone in a similar situation. After we watched my mother pass away from colon cancer 5 years ago, we know that quality of life is something we shouldn't take for granted.

My questions are: given the area they want to do radiation on, how tough are the side effects - 6 weeks for 5 days a week? I also question why they are wanting to do radiation since he's been told he has an agressive form of melanoma and the radiation is only treating a targeted area. I believe they will also suggest interfuron as a treatment option. The oncologist has already said the side effects can be tough and many people aren't able to tolerate them. For someone around my dad's age with less than perfect health, are there many success stories that show it works without having harsh side effects? Should my dad deny any further treatment, do you know of studies that show how long it takes for the type of cancer he has before there's a recurrence? Should a recurrence happen, is there typically an extended amount of time before the cancer causes such side effects that it's hard to go about your daily life?

I know some of my questions aren't easy to answer but hoping someone in a similar situation has information to share. I'll be going to the doctor with my dad later this week and want to make sure I'm helping to ask the right questions. There's a lot of information to find online but it's when I'm trying to combine multiple aspects that it's harder to discern the information.

Thanks for taking the time to read this.

 

 

 

 

 

Login or register to post replies.

Ashley's picture
Replies 9
Last reply 11/6/2014 - 11:44am

Hi Everyone,

 

I know I'm getting ahead of myself, and and should live for the moment with happy thoughts, but my dad who is stage 4 just had some incredible scans on a nivolumab/lirilumab trial.  They are only the first set of scans, but his LDH levels are continuing to decrease and are almost in the normal range, which makes me really think that his scans are going to continue to look great.

 

My question is around experience with longevity of PD-1 therapies.  Do they continue to work?  I realize that this is a combo trial, but assuming its the PD-1 that's helping him out, should we expect things to stay good?  He even had a small tumor in his brain shrink, which leads me to believe that at least one of the drugs cross the blood/brain barrier.  

 

Just looking for other people's experience.  I know BRAF drugs tend to be short lived, and then melanoma comes back aggressively...wondering if we should expect the same with PD-1.

 

Thanks,

Ashley

Login or register to post replies.

JimS's picture
Replies 5
Last reply 11/4/2014 - 2:29am
Replies by: JustMeInCA, JimS, casagrayson, Anonymous

Hello,posted on here a couple weeks ago about my mom having something removed from her arm and her being very nervous about what it was.After talking with the kind folks on here and others,we had her calmed down and waiting for biopsy results.Well,it has been over 10 days and no word so she called the dermatologist today.They said the results would be delayed an extra day or two because the lab wants to do extra tests and stains.The lady said this was neither good nor bad.They just wanted to do extra tests.Well,needless to say,my mom is panicing worse thean ever now."Extra tests?" she told me."That cant be good."She's freaking out bad.

Anyone heard of this?Is it common?Thoughts on what to tell my mom?Thanks,everyone.

Login or register to post replies.

Wolverine's picture
Replies 4
Last reply 11/4/2014 - 4:43pm
Replies by: Wolverine, kylez, Janner

Hello,

 

I am Stage 3C and have been since July 2012.  Would being at this stage disqualify me from being a kdney donor?

Everyday is a Gift so Fight Strong, Live Long

Login or register to post replies.

Randy437's picture
Replies 9
Last reply 11/4/2014 - 10:21am

I'm now 5 years NED.

 

Randy - Stage IV

Login or register to post replies.

chowmene's picture
Replies 7
Last reply 11/3/2014 - 12:04pm

hi, my name is mark and just learning about melanoma. just had mole removed and was told it was superficial spreading melanoma clark lvl ll breslow depth 0.40 mm. i understand i'm lucky it was found when it was. should i use sunscreen even if i'm just gonna be out walking to work about 10 mins. time?

Login or register to post replies.

JustMeInCA's picture
Replies 6
Last reply 11/8/2014 - 6:29pm
Replies by: Carole K, JustMeInCA, Anonymous

I'm hesitant to post this question because: 1) it seems so inconsequential, and 2) I feel rather idiotic, but it's a genuine issue and I'm at wit's end. My dad is Stage IV with several large tumors on his right leg that cause him a good amount of neuropathic pain, especially at night. He, who was never a cat guy, was adopted a couple years ago by an abandoned cat which simply adores him, to the point that if Dad goes outside, the cat sits at the door and yowls.

The problem is that the cat, Sidney, likes to lay on Dad in his recliner. This isn't as much of a problem during the day, but Dad has taken to sleeping in his recliner at night because the pain is more bothersome when he's lying in bed. Of course Sidney now also wants to sleep there with him and wakes him up during the night when he moves and touches Dad's leg. 

I've slept in Dad's bed the last couple nights and locked Sidney in there with me, but he yowls and bangs on the door to wake the dead. We've tried to come up with other solutions, but Dad won't go for anything like a squirt gun or sonic deterrent -- he just says, "No, leave the poor little guy alone."

Has anyone else had to deal with an overloving pet? Any suggestions would be greatly appreciated.

Login or register to post replies.

vicuk's picture
Replies 5
Last reply 11/3/2014 - 12:32pm
Replies by: vicuk, Ginger8888, Anonymous, G-Samsa

So Helen has had latest scan and the melanoma is back. She was diagnosed 2. 5 years ago and was lucky enough to get on GSK MEK trial straight away.  Initially, the mel was in her ovary, her pelvis and her lungs. The trial drugs started work straight away and got rid of everything although her ovary was removed. The mel is back in her pelvis but her lungs and everywhere else are clear. Dr. says next step is Yervoy. Advice needed please. What are success rates with Ipi and where could we turn to after? We are in U.K so understand things will be different. She's my best friend and only 32. Ideas, advice and anything else.

Kind regards,

Vic.

Login or register to post replies.

KRob's picture
Replies 4
Last reply 11/2/2014 - 3:23pm

Friends, 

I am a stage IV survivor (10 yrs this Feb) who visits now and again to check in on others, get the latest news, and try to share hope.

For those who have been and those who are new to this world of melanoma, never give up hope and never accept being a statistic! People do survive! 

For you whose battle is not going well, I pray that God our Father gives you strength and courage. Please know that you're always in the prayers of others.

Today I ask your prayers for a fellow melanoma warrior, Danny age 60, who was just diagnosed last week stage IV with metastatic spread to his bones (more tests are forecoming). He is at The James in Columbus, Ohio. Please pray for Danny.

Many thanks,

Karen

"Write it on your heart that every day is the best day in the year." - Ralph Waldo Emerson "Dreary though the path may look to others, it has quiet lights and gentle shades that no other path in life can offer."

Login or register to post replies.

Steve2142's picture
Replies 5
Last reply 11/2/2014 - 1:06am

I am currently being BRAF-tested.  If the results are positive, my onologist will put me on taflinar + mekinist.  If I am negative, he mentioned an expanded access trial with yervoy + keytruda.  I have not been able to find out how anything on this trial or the combo of these drugs.  Any info would be very much appreciated.  Thank you!

Login or register to post replies.

Pages