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

I have come to realize my only post on here was about my mothers death. Knowing she was an avid writer on this board, I now hope to continue this tradition.  After my mom passed, I was astonised by how much support I recieved on here. Now, after nearly two years, I'm breaking the silence and vow to be supportive as my mother was when she was on here. 

As far as melanoma awareness goes, I have spoken to the Delaware house of represenatives about melanoma, I am working with Delaware health and social services to push more awareness in my state, and I did my senior research project on melanoma, which I am happy to say i got a 100% on. I will continue my research in college and my advocacy as well. I am studying biology for pre-medicine, maybe not oncology per say, but I would like to save lives. 

I will be attending Eastern University in St. Davids Pennsylvania, where I am a member of the leadsership fellows program, a scholarship through the school. I hope to use my leadership platform to start a skin cancer group or something of the sort around my sophomore year. 

 

My prayers go out to all the patients, family members, and anyone else affected by this disease. I know prayers kept my mother alive better than any medicine could, and it can work for you too.

If anyone would like to email me regarding awareness, grieving, coping, or any research, you can contact me at lilithelmore@gmail.com as I regularly check this email. 

 

Blessings to all and stay strong, 

Lilith Elmore

Freshman at Eastern University, Biology major

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

Login or register to post replies.

94z28joe's picture
Replies 3
Last reply 8/5/2013 - 6:40pm
Replies by: aldakota22, 94z28joe, POW

went to the doctor to follow up after surgery to remove local reoccurance and was told I'm off the ippi vs interferon trial. I thought I would be able to stay on but, was told it wasnt working so I am being taken off the trial. :( They have me scheduled for scans on thursday to see where we go from here.

Login or register to post replies.

DeniseK's picture
Replies 6
Last reply 8/8/2013 - 4:19pm

Hello Everyone,

Well this Melanoma is full of surprises.  I went in for my Gamma Knife this last Thursday thinking they were going to zap 5 of my 7 brain mets.  SURPRISE I had 18!!  He said he used double contrast so he could see every little tiny met I had so some of them were less than 1mm but I spent ALL day at the center with that Dang Frame bolted to my head, which by the way was the worst part.  So now I wait for 30 days and I should be brain stable, then another 30 days and I should hopefully be stable to go into a trial.  I'm getting my 3rd infusion of Ipi on August 15th with the last dose on Sept 5th.  This Thursday I will be switching from Z to Dabrafenib, really surprised my insurance covered it. 

The pain in my arm has subsided, just mild tumor pain which I hope is the t-cells attacking but havent noticed much if any decease in the size of the tumor.  It appears to be stable which I will take!

I'm hoping by 1st of October to be in trial for Anti PD 1 if my brain cooperates. 

I'm not having any severe side effects from combining Z with Ipi yet.  I'm taking a Reishi Mushroom supplement which helps protect your liver so I think that's helping.

Just wanted to update everyone on my treatment and share my surprises.

All my best to all,

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

Login or register to post replies.

Kellie-T's picture
Replies 9
Last reply 8/7/2013 - 6:25pm

All,

I read posts but don't post that much here. Everyone has a story to tell and I'm thankful we have this forum to share because it helps me cope knowing you are out there and can relate to what is going on within all of us. On to my great news.....scans on July 25th (neck to pelvic CT and brain MRI) - "no evidence of metastatic disease present." Also, lab work continues to be very well. The doc put it like this, "18 months on treatment, scans are consistently great (NED) for the past year, much like remission".

I'm always cautious because this disease comes and goes as it pleases. I'm doing my part to stay healthy and enjoy life. I'm thankful for each and every day. The side effects are very tolerable (take six pills per day). My onc says that since I'm tolerating so well and my labs look great she sees no need in taking a break from treatment. Why mess with it when it is working so well?

Just wanted to share my little Z story.

 

Thanks,

Kellie

Life is not by accident. Make every minute count.

Login or register to post replies.

brooke's picture
Replies 15
Last reply 2/13/2016 - 2:24pm

Hello!

I've been reading about various 'cancer fighting'  supplements and wondering if anyone has opinions or experiences with them.

I've heard especially good things about curcumin, wondering what common dosing is.

My  husband has also been juicing every day and I've bought him green tea extract and vitamin D. 

(We are not doing this in lieu of standard treatment, just additionally!)

Thanks,

Brooke

Login or register to post replies.

brooke's picture
Replies 27
Last reply 8/25/2013 - 6:00am

Hello everyone,

My husband was newly diagnosed about 4 weeks ago with stage IIIb. A very normal looking round pink mole was removed from his back and turned out to be melanoma. After wide excision and sentinel node biopsy, the path report showed 1mm depth with widely clear margins and negative nodes. I felt very relieved until we were told that there was a small 0.6mm satellite lesion found within the biopsy site. Even though margins were clear and nodes were negative, he is still categorized Stage IIIb. 

Of course hearing those words put me into panic mode. My husband is 45 and we have a new baby and a 4 year old. Everything I've read about IIIb has me scared to death. Unfortunately, I"m one of those over analytical anxious people and find myself already planning my husband's funeral.

I've been living in this crazy world of anxiety, fear, loss of appetite  and upset stomach. I look at my young children and can only think that they'll never really know their father. 

I guess I'm telling all of this in hopes of hearing some positive stories. I know this is a very unpredictable disease and I guess I"m just reaching for some hope. I realize there is no way of knowing if the cancer will spread so I'm curious if there are people out there with similar diagnoses. Everything I read about IIIb talks about positive lymph nodes, I just wonder if his diagnosis is any more promising.

I'm also hoping for some advice from other spouses or loved ones on the best ways to cope. I've looked into counseling and my even need to start on some meds. I know I need to stay healthy in order to take care of my family.

After meeting with oncology last week, we have opted to enter the ipi vs interferon trial. We're really hoping for the Ipi and may opt out if he is placed in the interferon arm. They have also offered the 'watch and wait' option which I have to say scares me a lot. I have also asked for a re-read of the pathology by a dermatopathologist. Those results are still pending. 

Thanks so much for reading, I look forward to hearing from anyone out there.

Login or register to post replies.

Kate M's picture
Replies 6
Last reply 8/5/2013 - 5:47am
Replies by: GAngel, awillett1991, Kate M

Ok my mom started zel early July 4 tabs 2 times a day and get a grade 4 itchy rash off until July 21 restarted 3 tabs 2 times a day after 5 days she has been taken off due to breathing difficulties and flu like symptoms until August 8 then she will try 2 tabs 2 a day. Not sure what is next if she can't do zel. I asked about switching her to dabrafenib and they are checking to see if it is available in our area and if her insurance co is willing to pay.
We had to go to a private organization for help with the copay for the zel .does anyone have any information on the cost of dabrafenib.or any idea what our next step should be.
We don't have a melanoma specialist close enough to see and she is unwilling to travel. But thankfully her oncologist is good and willing to check out everything I ask about.
Thank you all so much we would have not made it this far without all of you.

Kate

Login or register to post replies.

Kate M's picture
Replies 0

Ok my mom started zel early July 4 tabs 2 times a day and get a grade 4 itchy rash off until July 21 restarted 3 tabs 2 times a day after 5 days she has been taken off due to breathing difficulties and flu like symptoms until August 8 then she will try 2 tabs 2 a day. Not sure what is next if she can't do zel. I asked about switching her to dabrafenib and they are checking to see if it is available in our area and if her insurance co is willing to pay.
We had to go to a private organization for help with the copay for the zel .does anyone have any information on the cost of dabrafenib.or any idea what our next step should be.
We don't have a melanoma specialist close enough to see and she is unwilling to travel. But thankfully her oncologist is good and willing to check out everything I ask about.
Thank you all so much we would have not made it this far without all of you.

Kate

Login or register to post replies.

flvermonter's picture
Replies 1
Last reply 8/2/2013 - 3:14pm
Replies by: Janner

Hello,

I am normally writing with questions for my husband.  however, I had a mole removed on Wed at the Dermatoligist i have had for awhile on my kleft claviacal.  My Grandson has been trying to pull i off for awhile now.  The dermatoligist called and said is wa "nevi" and they were going to send it off to another lab for further investigation and I would know in 7-10 days.  Probably nothing, and will be benign, but just curious if others had this.  Thanks, Mary

Hugs to all, patients and care givers.

Login or register to post replies.

Jims wife's picture
Replies 2
Last reply 8/3/2013 - 9:33pm
Replies by: NYKaren

My husband had his second treatment on Wednesday.  He is stage 4 (into lungs).  On the way home from Boston, his system let loose and he could noy control the diahrea.  They had him take prednisone and return to the hospital for a few hours.  He has had one or two incidents since but nothing like that commute home and the following hours.  Has anyone experienced this reaction?  I see people mentioning rashes.  This was very frustrating and upsetting for him.

Any thoughts?

Login or register to post replies.

ecc26's picture
Replies 7
Last reply 8/4/2013 - 11:35am

Hello Everyone!

There has been a fair number of posts/discussions lately by those of us who have or are caring for someone in stage IV with brain mets. Often the posts and discussion have been centered around being denied access to clinical trials and having to undergo some sort of brain radiation in combination wth Ipi and concerns about the efficacy of WBR and Ipi's lag time before showing any effect. I've been following many of these posts and replied to several myself as I found myself with 7+ brain mets in June and denied access to PD-1 trials. Due to the number of brain mets I ended up going with WBR starting concurrently with Ipi and my doctor decided to add on self injections of GM-CSF for 14 days after each dose of Ipi. 

I recieved my 3rd dose of Ipi one week ago, and had my one month post radiation MRI this week and just got home from the results appointment. I wanted to share the good news and possibly give some hope to the others out there that are dealing with the worry that comes along with stage IV with brain mets. They were expecting my one month follow up scan to be more or less the same as my pre-radiation scan, with reduction in tumors hoped for for the 3 month follow up MRI. Today I got an early gift: There are no longer any areas of concern on my meninges and of the 7 visible masses that were there before on only 4 are still visible and those are so faint/subtle they may just represent scar tissue. It's a much better result than anyone was hoping for for this scan and I'm on cloud 9!

So hang in there everyone! There is always hope and good things do happen!

-Eva

Login or register to post replies.

ClaudeM's picture
Replies 15
Last reply 2/19/2014 - 7:16am
Replies by: ClaudeM, Anonymous, Bubbles, Cooper, lanasri, POW

Diagnosis: Nodular Melanoma, Breslow 5mm, Clark IV, no ulceration, no periphereal lymphoadenopathy. T4NoMo.

I was on Biological therapy with interferon alpha 2b. I went through the induction phase. 5 days a week 30 MIU  INTRON A intravenous.

Wow was that a living hell or what? My liver was so damaged by the end of the month that my doctor thought i had Hepatitis. My ast/alt were like 450, and 420.

The second phase was better, but still pretty damn bad. 18 MIU INTRON A 3 days a week for eleven months, subcutanously with Multi Dose Pen.

I remember I thought that eventually it will get better , headache, nausea, fever, leg pain but it's didn't. I mean, the fever was not so severe as it was in the begining but everything else just stayed the same.

Now i am doing a research of real life stories of how everyone handled their dose of "liquid hell".

Please, if you went through a therapy with Interferon, Roferon, Peginterferon, tell me how you dealt with it. What were the side effects? Did anyone found a way to deal with some of them?

Also, if you are about to start this treatment , please contact me and i will help you with all i know about it.

It's good to be here on this site, i don't know why i haven't found it sooner.

Login or register to post replies.

chalknpens's picture
Replies 9
Last reply 8/2/2013 - 8:36pm
Replies by: Janner, chalknpens, Anonymous, JerryfromFauq, POW

Hi again,

I'm sixty-three years old. I have had five sites surgically removed:two melanoma, two basal and one squamous. I have a sixth site (squamous) about to be removed next week from my chin. The largest melanoma, on my back, was a wound the size of a softball when it was finally closed nearly a week after beginning the 'slow Moh' surgery. I now have the "mark of Zorro' on my back, the scar left after about 70 sutures there.

I am also diagnosed with multiple sclerosis. I am heat intolerant, and this has been a brutally hot month in Massachusetts. I'm not  a summer person; never have been. I did take nightly injections which targeted my strong immune system, and I believe weakened it. Following that, the skin cancers began appearing. I no longer inject. Doctors still prescribe the injections, though ten year studies have proven them ineffective.

The surgical sites are all far from each other; right shoulder, left back, left forearm, right shin, left calf, and now my chin. My dentist is also watching a rough spot under the side of my tongue that becomes irritated when i eat hot food. He'll see me again in two weeks to follow up on that.

My face has changed in shape from an oval to an inverted triangle. My cheeks are hollow. I have brown spots on my right cheek, near the cheekbone. I fear that we will continue finding these sites and surgery will be never ending. I've had eight Moh surgeries over the past year at theoe five sites.

I am so very conscious that others here are in more serious condition, and I apologize for coming back again with what may be trivial worries. I'm just wondering if the fatigue and general sense of weakness is too easily attributed to the diagnosis of MS, and perhaps that easy assumption is mistaken.

I do take a maximum dose antidepressant for clinical depression and anxiety. I began that two years into the MS injections.A psychologist tells me that I have PTSD following the diagnosis of MS, the war death of my nephew in Afghanistan, death of my sister and brother of unrelated diseases (kidney failure and lung cancer.) And my unexpected, unplanned for early retirement that limited my pension, etc. etc. etc.

I'm worried that the skin cancers are widespread throughout my body and perhaps I actually have 'cancer' with the capital C, rather than 'just' skin cancer.

And I'm worried that I'm making too much of this.  I'm still on a three month schedule of dermatology visits for cursory skin exams. He generally asks me if I have any spots I'm concerned with, and then spends about 40 seconds looking at my skin top to bottom, back and front. I'm in and out (other than the time spent changing into the paper towel 'gown' and then back into clothes) in less than three minutes time with the dermatologist.

Is this what is supposed to be happening? I am reluctant to tell him of any sites myself. I just spent a month hiding from the sunlight due to a strong reaction to Picato, which the dermatologist tried instead of more cryosurgery (I've had dozens of cryosurgeries between real surgeries.)

Any thoughts? Tell me to sit down and shut up? Pat my on the shoulder? Could this be real Cancer?

I am not perfect, but I am enough.

Login or register to post replies.

Well the fun never ends around here. My husband has been having a rough time for the last couple of weeks with all these side effects (extreme fatigue, shortness of breath loss of appetite, bad taste in mouth) and I did some research on all the drugs he is taking and found out that the Melanoma Drug, Zelboraf and the drug our Doctor at Moffitt prescribed for the thrush in his mouth, Fluconazole is a Level 1 contraindication, which means when these two drugs are combined it can have severe side effects up to and including life threatening.

Needless to say I called the specialty pharmacy where the Zelboraf is dispensed and talked to a Pharmacist and she verified that it is a "BIG NO NO" to take these drugs together. We get the Zelboraf from a Specialty Drug Department and all our other prescriptions are filled at our local pharmacy and I "assumed" they were both connected and if any drugs should not be taken together they would let us know. Well the two departments computer systems of the same Pharmacy are not integrated. Who would have thought?

I have called Moffitt and talked to the head nurse who was very vague in her responses to me and said she would talk to the Oncologist when she was back in tomorrow. The Pharmacist had told me it will take about a week to 10 days to get all the Fluconazole out of his system but he should see many of his side effects cease when it is out of his system.

I just cannot believe that our Oncologist prescribed this medicine for the thrush in his mouth when there is such an interaction with the Zelboraf. I can't wait to hear her explanation.

My lesson learned in this is that I must be completely on top of everything that is going on with him and not just take things for granted - Do your research and ask a lot of questions. I thought I was but I never saw this one coming.

I just hate that he has had to go through all this for someone's lack of knowledge or error.

We are in it to win it!

Login or register to post replies.

http://forums.poz.com/index.php?topic=15632.0;wap

9 pages long.  I am still reading it.

I'm me, not a statistic. Praying to not be one for years yet.

Login or register to post replies.

Pages