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.

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Yes !!!!'! Yeah !!! Amen !!! Glory be ! Yippee !!!!
Just saw Dr. B and everything was great for "my wonderful Wayne " :-)))

Noooo melanoma in MRI of Brain or PET Scan and all
Blood work looked great !!!
Whew !!!!!!! Alright !!!! Exhale !!!!!

All praise to God we give !!!

Warrior Wayne and Nancy - dancing a JIG !!!! -)))
Dance with us ????? :-)))

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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NYKaren's picture
Replies 1
Last reply 1/18/2013 - 1:55pm
Replies by: awillett1991

As many of you know, I've been on Zel for about a month now with few side-effects...SCC removed from back of knee, lots of skin tags around my eyes, some joint pain & very slight neurapathy.  I do take Benfotaime(sp??) 500  mg/day,  so perhaps the neurapathy & fatigue would have been worse.

Anyway, past few days, my right elbow has been swollen and painful to even extend arm.  Celebrex (which I had been on for the slight-medium joint pain)  or Alleve alone didn't work, Dilaudid 4mg did absolutely nothing, so Onc. started me on 5 mg. pred/day.  Yesterday (first day)  I stupidly took 10 mg in the a.m. because I forgot the pills I had were 10 mg & didn't break in half plus 2 Alleve morning & night. (pred was and is only 5 mg. in the a.m.)

This morning I woke up depressed (no surprise there) and pain was finaly a little better, and I took the 5 mg. and 2 Alleve.  BTW, I am on nexium 40 mg 2x/day.  A little nauseous, which is a good thing because I've been eating like there's no tomorrow before the Pred.  No nausea on the Zel.

I did take much larger doses of Pred when I had colitis from ipi, then hydrocortosine when I had adrenal insufficiency from the Pred! 

SO, I am interested in hearing others' experiences/dosages w/Zel and Pred.  if it's not for public consumption but you're willing to share, please message me.

THANK YOU VERY MUCH!

Karen

Don't Stop Believing

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annballard's picture
Replies 1
Last reply 1/18/2013 - 1:34am
Replies by: Janner

Hi Everyone,

I'm a 3a since 5/09 an no recurrance to date, however I'm heading to the determatologist tomorrow because of a new black lesion on my chest. My initial melanoma was on my calf. 

Does anyone know if this would this change my stage if it was local only? 

Thanks, Ann

Everything is for the Good.

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BrianP's picture
Replies 4
Last reply 1/20/2013 - 2:21am
Replies by: JerryfromFauq, Tina D, Anonymous, aldakota22

Hello fellow Melanoma warriors,

I have received so much information and inspiration over the last year.  I wanted to share with my fellow warriors a portion of a note I recently sent to my family and friends,

"Like a lot of cancers there is a significant chance of recurrence so I won’t know if I truly won my battle with cancer until I’m holding my grandkids about 30 years from now.  That’s the tough thing with being a cancer survivor; it’s always in the back of your mind.  If you really think about it though none of us really know how much time we have left on this earth, it’s just more prominent for cancer survivors.  The silver lining in all this for me is the realization that if I am fortunate enough to hold my beautiful grandkids many years from now I know I will have been a better husband, father and hopefully friend to many of you.  I will have counted more blessings, admired more sunsets, taken more walks on the beach, prayed more, loved more, and stressed less.  Not a day goes by now that I don’t thank God for all the blessings in my life and I have to admit I didn’t do this before my cancer.  I hope all of you had a wonderful Christmas and I pray for you and your family for a HEALTHY New Year."

It's been a tough run for me the past year but I know others have had it much worse than I and some are still going through tough times.  I hope many of you also are experiencing a richer life or have the opportunity to experience a richer life in the future.  I just recently retired from the Marine Corps and there's a saying in the Corps as well as the other Military services that goes something along the lines that freedom has an even deeper value for those warriors who have put it on the line to defend it.  In a way I think it's the same for those who have fought and are still fighting for our lifes in this battle against melanoma.  We all gain a much greater appreciation for how precious life is.

Take care,

Brian

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jtheisen29's picture
Replies 2
Last reply 1/19/2013 - 6:47pm
Replies by: Tina D, JakeinNY

 

Hi Everyone, 

 

I don't normally post here but do try everytime my twin sister has her scans for all those melanoma warriors searching for other stories like I did so many times. My sister was diagnosed with stage 3b while 5 months pregnant. She opted to do the 1 month high dose interferon and then the 1 year low dose. Fast forward 3 and a half years she has a beautiful little boy and is fully enjoying life. She just got scan results and she continues to show no evidence of disease. This forum has been such a help when I was helping her after diagnosis and still continues to be while keeping updated on the current treatments that are available. God Bless you all!

 

Jessica 

Former caregiver to twin sister with stage 3b melanoma

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Erinmay22's picture
Replies 12
Last reply 2/18/2013 - 10:12am

 

I'm getting ready to start PD1 on Monday.  Had biopsy and new scans taken yesterday (still haven't heard how much my scans have changed in the last 4 weeks...).  
 
Curious to hear from folks that took Ipi and failed and then took pd1?  What type of results did you see?  I know I've read a number of different things...  
www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Snickers60's picture
Replies 3
Last reply 1/18/2013 - 11:05am
Replies by: Tina D, aldakota22, NYKaren

Wayne had his Sedated Brain MRI and PET Scan this morning.    We see Dr. B. at 11 tomorrow morning.  

LITTLE SCANXIETY going on, :-)))  - ,but trusting God to have another good report waiting for us !    

LOTS of very sick people here this visit.    ALWAYS A WAKE UP CALL even when you are NED for a while.

Will update after we see Dr. B tomorrow.     Prayers are appreciated.   

Hope all of you are having a GOOD and TOLERABLE DAY and getting good reports EVERYWHERE !   :-)))

Nancy (devoted wife of 3 X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Marilynn Eiken's picture
Replies 1
Last reply 1/17/2013 - 8:02pm
Replies by: SStamps

I've written several times regarding my husband Tye.  Started with a mole on his back.  Mets straight to the brain and nowhere else back in Oct of 2011.  WBR and gamma knife followed.  Thought we were chugging along pretty good.  Started leukine last summer.  Then in November a small liver tumor which we irradicated with ablation therapy.  Then  in Dec the MRI showed enough change for the surgeon to say "I think its necrosis but its bigger and i think we should take care of it."  Low and behold.....melanoma grew back right where it seeded before.  Yesterday we actually got to see pictures of it.  We also got to see the "thin film" of black melanoma running along a vessel in the lepto menengies (sorry I know I spelled that wrong).  My husband follows no standard path.  Where there is LMD (leptomenengial disease)  there is usally widespread tumors.  He doesn't have any.  Where there is LMD there are usually symptoms.  He's very stable.  Some "maybe" symptoms but they can be explained through other pathways, ie-hearing has been very bad since surgery.  This happened last surgery and post WBR and hearing returned.  Abruptly after surgery, hearing TERRIBLE.  Has some  back pain.  Has always had some back pain and it doesn't feel different.  This melanoma is so sneaky and tricky. 

We are leaving next week to go to my son's Basic Military Training graduation from the Air Force.  When we return we will start ipi.  I feel its a good choice because we are shooting for long term effects and he has no real "measurable" disease which would be more Zel directed as he has a BRAF mutation.  Plus, it will be another stepping stone to the Anti PD 1 trials.  (Which I learned yesterday are coming to Mayo!)  I finally feel like our whole team of doctors is on the same page as we are.  Treat agressivley, goal is survival! 

I did some research on LMD last nite.   Not good.  A lot of my good warm fuzzies got lost in the literature.  One thing I have learned from this site is we are NOT statistics.  We are individuals and we have to hold on to that hope.  So Im hoping there are other lepto warriors out there that can share their insite with me.  I thought I found some mention from some of you so thought I'd put it out there again since the posts I found were from 2011.  We've got to beat this beast!

 

Marilynn

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mama1960's picture
Replies 6
Last reply 1/20/2013 - 3:29am
Replies by: JerryfromFauq, Tina D, mama1960, lou2, Anonymous

I have never been that person who goes to the doctor for checkups, but with all the Melanoma mess I decided to do the right thing. I had a blood test to check all the usual suspects, cholesterol etc. They are way out of the ball park and I am going to work on that. However, he also tested a couple of things I never heard of. They have to with inflammation and the possibility of heart disease. They are hs-CRP and Fibrinogen. The results are off the charts. High for the first one 2.9 and mine was 32.2. For the second one high is 464 amd mine is 658. He says this show a really large amount of inflammation somewhere in my body. Said it could be a result of cancer or the surgery, but there is no way to know for sure. Anyone out there familiar with this?

It is what it is.

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awillett1991's picture
Replies 27
Last reply 1/20/2013 - 8:58pm

Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned - says its Ipi induced. My 4mm brain met is now "tiny", the other went from 6 or 7 mm, depending on which report you read, to 5x3. Also there was no edema, and rad onc said I had it in my spinal cord due to "questionable leptomenengial enhancement over left frontal convexity". He discussed WBR, but we went SRS instead. Now this area is "less prominent". Scary.

The mass inside my heart had really taken off when I stopped Zel - from 7x11 mm on Sept 29 to 28x41x41mm with decreased heart function in 47 days off Zel. Now function is near normal with mass reduced to 19x30x34.

I have been back on Zel 63 days, actually taking the drug 48 of those days after a 48 day break to start Ipi. Unfortunately there is no way to ever tell if the Ipi worked according to my Dr because of me taking the Zel. Something is working though and for that we are very, very, grateful!!!

I created a Zel timeline w pie charts for my doc to see how much drug I'd taken, and the breaks I'd had. I've started an intermittent schedule of two weeks on/one week off to try to reduce side effects and get me off prednisone. And maybe it will prolong the response. I've been on pred since dec 14 when I was hospitalized for liver toxicity. ALP was 6x normal. Right now ALP is fine, but AST, ALT and Bili are all up and climbing so this is my one week off. Hopefully what held true in those poor little melanoma mice will work for us too. Squeak squeak.

Zel side effects still suck. Period. But I have a lot more energy, overall I feel great, and I'm alive!!!

I'm so thankful for everyone here, their positive stories and encouragement, and we are thanking God for this good news after a rough and scary few months. I have no regrets. Many prayers for continued good news for us all.

Amy

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Leigh's picture
Replies 33
Last reply 10/25/2016 - 6:48am

Hi there,

I know this has been mentioned before but it seems most of the threads end up with different conclusions depending on who is responding so I thought I would ask again.  There seems to be a huge gap between different doctors recommendations which is very scary when facing a disease like melanoma.  I would really appreciate it if you might comment on advice you have been given and what stage you were/age at the time.  Also if you did fall pregnant what the outcome was (although I know that is just anecdotal evidence at the end of the day it is encouraging to hear).

It feels selfish to write about this here when so many people are struggling so much with this disease, but the prospect of worsening your prognosis with pregnancy is frightening.  Made more so by the disparity in opinions within the medical fraternity.  I'm not sure if this is clinical bias, or perhaps lack of up to date knowledge that drives this.  From my reading, Marcia Driscoll's most recent 2010 review of the data suggests no correlation between pregnancy and melanoma/hormone use such as oral contraceptives/HRT and melanoma etc.  I am reassured when I read the article but I know some researchers get a bee in their bonnet about things and perhaps she is in the group favouring pregnancy. I recall lots of comments on this website, some women who have died following pregnancy with young children left behind.  I'm not sure of their stage when they fell pregnant but I know some have been convinced progression of their disease was related to pregnancy/IVF.

My situation is that I am 37 and have two beautiful children.  I do not want to leave them without a mother and would not want to take a risk with that.  Similarly I do not want to not get pregnant if there is no real increased risk of recurrence as per this article and some advice I have received.  We have wanted a large family of 4 children and time is running out for that dream so it is decision time.  2 years ago I had a Stage 1 melanoma removed which grew during pregnancy.  It was Stage 1, no ulc, <1 mitosis, 0.83mm, Clarkes IV, neg SLNB.  I saw three doctors before it was removed and only then because it was "bothering me", it was itchy. 

I have consulted various people - two dermatologists told me with the latest literature "no worries", dont "not get pregnant" because of the melanoma.  A surgeon (melanoma specialist) vaguely said, well if you wait 2 years you should be right.  More recently a Prof of Surg (melanoma specialist) has  said that if I fell pregnant, and if I were to recur, pregnancy would bring this forward.  (this was not borne out by my reading of Marcia Driscoll's review). 

This is very rambly and if you have managed to get this far you must be interested in pregnancy and melanoma.  I would really appreciate it if you would share the advice you have been given along with your age and stage of disease to see if there is any real consensus.  I am not sure if this truly does remain controversial or if it truly is reasonable just to go ahead with no real increase in risk (as per my reading of Marcia Driscolls review).

 

Melanoma tends to bring out the anxiety in me and I feel flustered just writing this and trying to get my thoughts together on the topic.  Hope this makes sense to you and thank you for reading.

 

 

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Sorry I posted twice by mistake

 

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Rocco's picture
Replies 3
Last reply 1/19/2013 - 9:08pm
Replies by: Jim M., Anonymous, awillett1991

Just got scanned yesterday with results today.  Appears there may (or may not) be inflamation around my thyroid.  Any MDX/Ipi/Yervoy survivors that now have thyroid issues?  I finished my MDX/Ipi trial in Feb 2009.

Thanks for any replies.

Rocco, IV since 2005, NED since 2009 thanks to Ipi

Luke 1:37

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Anonymous's picture
Anonymous
Replies 0

I had a small, new mole on my ear removed via punch biopsy a couple of weeks back.  The biopsy came back as severely atypical - I have requested the pathology report, but have not received it yet.  My understanding is that in addition to being atypical, they did not obtain clear margins on the original biopsy.  My dermatologist referred me to a plastic surgeon for removal of the remaining abnormal cells plus a margin, but my consultation with her is still a couple weeks off and I am driving myself a little crazy with the as yet unanswered questions.

I know that severely atypical does not equal melanoma; that histologically, it's really close, but not quite.  Can anyone point me to the results of research studies on how often severely atypical moles do transform into melanoma?  I know that 5 mm margins are generally recommended for severely atypical lesions, but I am concerned about how much of my ear that is.  It seems like an aggressive treatment, and I am trying to understand what the treatment is backed up by.

I am also wondering if anyone can give me an idea of what to expect for the surgery.  The mole was on the scapha/antihelix of my ear, so it's kind of a complex area to work in for the reexcision.  Since my dermatologist referred me to a plastic surgeon, I am assuming they expect to perform some level of reconstruction on the site - does anyone know what reconstruction options I'm likely to be presented with?  Is it likely they will need to perform a skin graft?  What sort of recovery time is typical for this type of surgery?

Thank you.

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