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
Rita and Charles's picture
Replies 9
Last reply 5/10/2016 - 11:28pm

So new scan results, the BRAF/MEK combo is stil working - right tumor shrunk, no new organs affected, left lung mass showing in last PET scan not showing as significant on latest CT, lymph nodes affected still show uptake but no new change......So stable, stay the course.  BUT, the last months in particular the Tafinlar/MEK has affected Charles even more - more nausea, more tatique, a terrible quality of life - always in pain.  But stabel right?

I am going to take a leave from work, Charles is at home and sick each day, sick for the last 9 months....we need a break, a chance to grab a few happy months. So we spoke with oncologist, of course not happy at the thought of stopping treatment.....we tried to lower dose, but still Charles is sick from it...lost 11 more pounds from the end of March to our May appointment.  We went to the islands in April, Charles so sick - he stopped meds after 3 days then spent 6 days enjoying family more.

So we return home, timing is weird as we have to move.......so dream of running away to the islands for 6 months....go off meds, do bucket list.  But of course, no decison is easy.......without meds, will the melanoma monster explode, we come back and then go back to Braf/mek to shrink and then onto immunotherapy?  Is 6 months of happiness worth the risk? We make a decision and then frighten ourselves it's the wrong one.

If we stay here, go right to immunotherapy........no guarantee that will work, side effects, etc.....they grow and then we hope it kicks in.

I hate to bring this topic up as i see so many warriors, go from one thing to the next then the next....and we have only been at this a year.  But we are exhausted........do a few bucket lists knowing the costs may be great? or stay the course, just switch up the therapy......

Where we are going, treatment would not be available.........we are sure, we are not sure.......are we insane?  Will we look back 3 years from now and ask how could we have done this? or in 3 years, could he be worse, and we ask ourselves why in God's name didn't we grab a small window of time to just escape and be happy - then get back on the merry go round.

I don't expect any magic answer...........has anyone out there stopped, gotten off the merry go round, then jumped back on...

Confused, scared.....how do you ever know what the right choice is in this shell game of tumors and lymph nodes, just waiting to kill you.

Rita

Rita

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

I was diagnosed in 2001 with a medium size ocular melanoma and had plaque radiation in early 2001.  All my check ups had been great since then, with the tumor shrinking slowly (which my doctor told me was good, much better than quickly which he said could mean it was an aggressive tumor).  He was one of the doctors in the COMS study. I went every 6 months every year.  This year, after 14+ years, the doctor was surprised when the ultrasound showed the tumorr looked a little elevated.  I told him that I had been hit in the eye in the fall while playing with our son's 48 pound dog and got a black eye.  He sent my ultrsounds/scans of the eye out to other eye cancer specialists in the US and asked what they thought.  Hey felt it was possible I had dried pooled blood in the back of the eye from the hit.I have a cataract on that eye, so they always used ultrsound to measure.  He fletthey sould take the cataract off and have a betterlookat the back of the eye.  In the meantime,my chest x-ray and liver function tests were all normal.  I also had an ultrssound of the liver.It showed  some vague, ill-defined lesion on my left lobe of my liver.  Then, I had an MRI.  they used two different contrasts on two different days as the first contrast was blurry.  It showed a few very small spots. In  follow up with my doctor, she said she had spoken directly with the radiologist, and he said he was unable to determine what the small spots are.  Now,she has suggested doing a pet scan to see if it shows anything.  I am scared and anxious, which has always produced more acid in my stomach.  The past couple of weeks have been the pits.  Any thoughts?  HELP!

Login or register to post replies.

DZnDef's picture
Replies 1
Last reply 5/8/2016 - 8:41pm
Replies by: landlover

To all you Mom's out there raising kids and battling this disease at the same time, I salute you!  I hope your kids spoil you rotten today as you deserve!

To all of you that sill have your Moms around, I hope you give them loads of kisses and squeezes.  As hard as it is for us to deal with this disease, imagine what it's like for them.  They gave us life and now they watch helplessly while we do battle to keep it.  Rough stuff.  My own Mom has two of her kids fighting this beast right now.  But we're both still here!  So for today, it's all good!

To your health, everyone!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012

Login or register to post replies.

JoshF's picture
Replies 19
Last reply 5/17/2016 - 11:18pm

Hello again everyone. I saw onc yesterday after CT Scan. She said that mass on left side near intestines is not invading intestines but in tissue surrounding...which apparently is a good thing. The reading of the PET scan by radiologist said there was no concern with the high SUV uptake...appared muscular in nature which after the CT Scan Friday was confirmed. Though there appears to be two small spots in lower back. So we moved to options....surgery is a certain in both scenarios.

1. Transfer of Genetically Enginereed Lymphocytes. #01586403 So I guess you have to be positive for HLA-A2 antigen in your blood. They drew blood and I should know by Tuesday or Wednesday. They said it's 50/50 chance I'm positive. I have no idea what it is or means. Anyone have any insight into this trial? At first I thought it was a TIL trial. So blood results hinge on this...

2. Intratumoral Cavatak combo with Ipi. So I guess this is just ipi paired with injectable virus.

My onc likes both options at this point but wants that HLA-A2 test first because that could determine where suregery is done as Loyola University Medical Center has first trial. I have tons of questions that I posed to her that I'd like to pose here and ask anyone that can address please do.

1. Would TIL be a better option? I'm not sure I can get into that but shoud it be explored. Though she likes the promise of it, I'm not in a place where this treatment is needed.

2. I responded to ipi in past but apparently Nivo had no impact on me. Can the Nivo/ipi combo possibly provide a response...or keytruda? Some other type of combo. And can you respond a 2nd time to ipi. Her response was yes, people have responded 2nd time go around with ipi and have had durable responses. Clearly she feels ipi combo with virus is best path for me. I haven't see results but honestly I've been so beat down that I haven't looked.

3. What else is in pipeline that can provide benefit for me...a durable response. Apparently there is quite a bit but she never wants to put cart before horse. She feels these can be 2 good options that put me on the right path...I just can't help but wonder if there is something more.

Anyway, I'd like surgery ASAP. This seemed to come on quickly and like many of you I'm just plain tired of this shitty disease. I pray daily for all of us and give thanks for this forum. I try to peek in every now and then because I like to check in on people but really just stick to Celeste's blog. I saw that Charlie is back and it just pisses me off and make me even more upset. I hate to see the struggles but appreciate all the support...

Josh

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

Login or register to post replies.

Replies by: EkinIstanbul, WithinMySkin, Anonymous

Hello friends, 

My 1 year interferon treatment will be completed in 6 weeks. (stage3 melanoma) We have given breaks  in between every 2-3 weeks because of the low blood levels- side effects of interferon. Has anyone experienced this, do your doctors add the missing doses after 1 yr treatment and advise to continue a couple of more months to complete the full 1 yr? Many thanks and take care.. 

Login or register to post replies.

btcedarr's picture
Replies 2
Last reply 5/7/2016 - 9:16am

I have asked my dermatologist and onc surgeon and have never received a straight answer. I was diagnosed 1b with clear margins after a WLE and a negative SLN. I keep reading about people in similiar circumstances that evolve into other stages without another primary. How does this spread???

Login or register to post replies.

cheris's picture
Replies 3
Last reply 5/6/2016 - 5:50pm
Replies by: DZnDef, Scooby123, Bubbles

I am about to have my 17th infusion of Keytruda.  My scans and MRI showed good results: brain clear; non of the tumors or lesions showing in the liver; one stable on spine, and a questionable lymph node in abdomen.

My TSH was extremely low so the endocronologist lowered my dose of synthroid.  My glucose was high so she changed my diabetes med.  I am feeling so much better now.

This has proven to me that you have to be aware of your test results and be proactive in turning to other doctors if need be.  Blessings to all.

Cheris

Login or register to post replies.

kpcollins31's picture
Replies 3
Last reply 5/6/2016 - 6:30pm
Replies by: DZnDef, Janner, Bubbles

Just wanted to get a pulse on if I am being crazy or not... regrettably, I partially tore my achilles playing softball last night. I was scheduled to have my routine 6-month followup CT scans on Monday but I delayed them until July so I can get through this achilles recovery. I am stage 4 but approaching 2.5 years NED after a successful bowel resection a couple years ago. I feel fine and have no symptoms that would indicate a reoccurrence but I also recognize that symptoms are not always present. Although I am ok with a 2 month delay in scans, does that seem like too big a risk?   

Kevin

 

Login or register to post replies.

Mooglide's picture
Replies 8
Last reply 5/7/2016 - 2:45pm

I have battled with Metastatic Melanoma since November 2013- it began as a regressed mole on center of my back (removed and radiated) and has since then only been in my left side (armpit lymph nodes, upper clavicle area, super clavicle area, and most recently my arm from side of chest to mid bicep).  I had lymph nodes removed under left arm/ surgery to clean out upper clavicle area and was clean for 1 year on Tafinlar/MEK combo but was told to get off of these meds due to potential risks for longterm use.  Had recurrence within 30 days of stopping the combination drugs on arm/chest area and started Yervoy/Opdivo (finished 4th dose April 21).  Through this, my tumor actually doubled in size and was very red, and a piece of dead tumor popped up on top of my tumor creating what they thought was infection.  It busted open and leaked and they decided I should have surgery to open it/drain fully it due to risk of infection.  I received an IV of strongest antibiotic for 14 days and the culture of the area they opened was done and they decided it was not infection since nothing grew (thought it was possibly melting of tumor). I now have a very large (tennis ball sized) open wound that continues to leak (liqufactive necrosis possibly) that must be changed twice daily.  I don't have a lot of movement capability in my arm.  I went to MD Anderson to see what my next steps were due to the thought that they Opdivo/Yervoy combination immunotherapy does not seem to be working fast enough and Doctors at MD said that now my TILS (which I harvested with an earlier recurrance), chemotherapy, and experimental drugs will not be an option for me now due to the risk of infection to my open wound.  They said that proton therapy and the herpes shot into the tumor are not an option due to the size of the tumor. They truly said I have 2 options: 1. Amputate my arm (which will not get rid of cancer in chest area, just help with pain) and possibly go back on Tafinlar/MEK which did not work previously. 2. Radiate the arm and continue on with Opdivo infusions every 3 weeks (and they are not sure that I am respnding to this due to tumor growth through the Yervoy/Opdivo).  I feel like there has to be something else seeing that I do not have cancer anywhere else in my body other than arm/small area on chest (all connected as one large mass) , are there any suggestions of another melanoma doctor/establishment for me to go to get another opinion?  

 

 

 

 

Login or register to post replies.

Steve Plasier's picture
Replies 5
Last reply 6/6/2016 - 3:14pm

I did my second Yervoy infusion May 13th and ran a fever 0f 100 off and on for 6 days. I was to do my 3rd infusion May 4th and it had to be changed to May 11th because I started having loose stools for 5 days now. My cance Doctor said to use Imodium which I had started on the first day. Next Wed. if I am still having bowel problems I will be put on steroids. I hope it stops!

Steve

Login or register to post replies.

Springcreek's picture
Replies 9
Last reply 5/7/2016 - 10:34pm
Replies by: DZnDef, jpg, Ed Williams, Springcreek, Toby0987, Anonymous

I just want to recommend Cancer Treatment Center in Phoenix (Goodyear) for any of you considering treatment options.  They are absolutely wonderful.  They treat the whole person, not just the cancer and they are so knowledgeable about melanoma.  They have oncologists, surgeons, and care givers who specialize in melanoma.  

I had surgery for my melanoma in September and am cancer free now.   It was only stage II but I met others at the center with stage IV melanoma and they are doing well today.  

Cancer patients, no matter what type, are treated so special at this hospital.  Every time I go I feel like a queen instead of a statistic. It's worth a call if you are looking for help on your cancer journey. And, no, I don't work for them but if I lived in Phoenix I'd like to.  

Login or register to post replies.

Charlie S's picture
Replies 17
Last reply 5/15/2016 - 8:57pm

Whew.  I really had a great time when Janis Joplin and Joe Walsh came into my room in ICU and we had a super jam session.

The nurses are so kind " Well, Charlie if you saw them and played with them, they MUST have been here and just slipped out before anybody else saw them?"

Yeah, rightio; just be sure and leave some meat on a plate in the corner for when Bigfoot drops by later.

14 is enuf right now, so now comes the lasik push and probably an interesting  mind warp.

Let's see here 14 bags @7 grand a copy is..................ah!  98 grand.

At those prices I REALLY need to get a good buzz.

Wowee, some major muffler burn going on here though.

I'm pretty sure I will lose my mind tonight because the wallpaper here looks like the inside of an infected colon and I have no prior visual of that so probably no more posts until I dry out.

Cheers,

Charlie 

 

Login or register to post replies.

I really like the blogs and columns:  www.melanomainternational.org

 

Login or register to post replies.

dfeng's picture
Replies 8
Last reply 5/6/2016 - 1:51am

1 month scan result shows tumor igored the treatment again.

NYP columbia university suggested hospice as the first option.

Will move back to MSKCC to check out another trail. It seems to shall be my last treatment and I guess everyone has lost hope.

About my situation. Painkiller becomes daily medicine. Fluid is annoying but now I am having a catheter so I can drain it everyday.

I totally lost about 70 lbs from my strongest days, and it is still geting less and less. I am still trying to work, two half days a week, but most of time I have to sit in my chair and only can provide my brain.

I can still take care of my daily activies. Just very slow. But it is not safe for me to drive anymore. A disabled sticker now is on my car. Wife drives me everyday.

My parents are trying their best to cook the best food, so that I can eat a little more. I do not know without their support, how long I can hold.

Well, I am still enjoying my life ;) Now I am sipping from my flask, the scotch taste wonderful. Just a little bit, very little bit :D. Missing the days that I was alone in the woods, with my shotgun and snow.

 

D. Feng

 

Login or register to post replies.

Scooby123's picture
Replies 8
Last reply 5/5/2016 - 11:16pm

Hi all,

Been for my follow up after having SRS for brain tumour, all went well but will not know how well the treatment has worked till I have a MRI which my onc said leave it 10 weeks to give time to work.

my tumour on liver, lungs was stable on last scans so no treatment going to be given watch wait have all scans together in 10 weeks. Long wait but just going to rest and enjoy myself.

Asked some questions regarding treatments available I am not braf gene. He said PD1 Keydruda or re doing ippi, plus a trial of combo coming not sure when but I said would I be able to go on that due to been treated with ippi he was not saying yes or no for that one.  Plus he said things are changing all the time. Did feel a little better after but don't like watch wait after brain tumour but cus there was only one when re scanning and it's been treated feels due to stable eles where then no need for treatment at this point

off on holiday next week Spain with my daughter and sister so looking forward to rest.

take care all speak soon

scooby123❤️

Login or register to post replies.

Pages