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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mom3girlsFL's picture
Replies 2
Last reply 2/26/2011 - 2:27pm
Replies by: mom3girlsFL, Suzan AB

Quick history before I let you in my head:

mel '92, .9mm shin

7 yrs NED

2010 inguinal node dissection 9 of 11 nodes positive

start interferon

sept 2010 obturator node mel, radical node dissection, 4 of 5 nodes positive

stop interferon, "watch and wait" since nov 2010

Self #1 "You didn't fail interferon, interferon failed you"

Self #2 "You still failed"

Self #1 "You had a clear scan in November"

Self #2 "Yeah, how long will that last???"

Self #1 "Get out of my head!!!!"

Self #2 "You need me to keep you focused, keep on top of things"

Self #1 "I don't want this anymore, I want my NED, stage 1, 99% cure rate back"

Self #2 "I'm not going anywhere anytime soon...or am I?"

Scene fades into the smurf song -la,la, la, la, la, la...

Okay, so the smurf song - don't ask, I don't know why!  Anyway, another day, another mental challenge!

Laurie

Do not fear tomorrow, God is already there.

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mzeigler's picture
Replies 1
Last reply 2/24/2011 - 9:19am
Replies by: nickmac56

My wife completed 4 rounds of ipi and had our first scans.  No new mets!  The largest met did not change and the smaller ones looked

slightly larger but not much change.  Now we wait 4 weeks and and repeat scans.  She seems fatigued, and has stiffness and aches

in her joints and muscles.  We can put up with it if it stops the melanoma.  Mean while, doctor is testing for the braf mutation if the ipi does

not work.   He has access to braf/mek drugs and one called E7080.  The one he uses will depend on the test.

It's been a long haul.

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bball's picture
Replies 11
Last reply 6/26/2011 - 11:18am

Most discussions I have seen or to do 30 day interferon vs. one year. Two onc have reccomended to me to watch and wait instead of interferon.

I am 2a but it was 3.4mm ,nodular,and high mitosis. I also am 4 months from diagnosis and still not sure I am doing the best for me. Other than the mel I am very healthy. Thanks for any inpiut. Also has anyone done vit C IV?

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Anonymous's picture
Replies 2
Last reply 2/23/2011 - 5:59pm
Replies by: Phil S, Tracy Chicago

If you are able to get through the year of interferon, does it keep you from getting common illnesses as well as keep the melanoma at bay?

By common illnesses I am referring to colds, flu, etc.

I am aware that it doesnt keep melanoma away forever, but since it does pump up the immune system, it would make sense that common illnesses would be rare as well, doesn't it?

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Lori C's picture
Replies 9
Last reply 2/25/2011 - 7:26pm

Hi to all.   I have published another story about Will's melanoma fight, if anyone would like to read it

http://www.dailykos.com/story/2011/02/23/948581/-And-thats-all-I-know

I am following this board and keeping you all in my thoughts & prayers.

 

Lori, caregiver and soul mate to Will

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chrisS's picture
Replies 8
Last reply 2/25/2011 - 8:45pm
Replies by: Anonymous, chrisS, Carmon in NM, Carole K, jag, KatyWI

It's been a tough fight so far. Melissa was diagnosed with stage 4, tumor in chest, liver, and back, 6 months ago. It seems like yesterday we were turned down by NIH and we went in for our first IL2 in Sept along side himynameiskevin. It was both of their first weeks. It seemed to be working(20% shrinkage) after 6 admittance. We began a 2.5 month break 3 weeks ago but she had headaches this past weekend. Took her in yesterday and found out 4 mets and one big one in the front that needs to come out ASAP. My young(32) beautiful, full of life wife is so strong. Prob in a little bit of denial.

Anyone gone through the surgery and know what the risks are?
Will she change? Should I take a leave of absence from work? So many questions.

Happy the tumors in her body have shrank. It is a blessing we went in because we are going to Maui on fri for 3 days, and had some scuba planed. Apparently the water pressure my have caused brain bleeding on the tumors. Man that would have been real bad.

One other question, has anyone traveled in an airplane with brain mets? Is the pressure a problem?
She is now on steroids that have helped her headache and I assume brought down the initial swelling.

Thanks everyone. This board has always been so informative and the LOVE on here is incredible!
Keep up the good work!

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kbc123's picture
Replies 4
Last reply 2/24/2011 - 3:35am

I think now I have more information to go on.  Now I am totally confused as to treatment.  WAIT and WATCH?  Who invented those words anyway?

I had my lymphoscintigraphy, (twice actually-at preadmission for mapping and then again on surgery day) I had SNB and Wide Resection last week.  My results are one lymph node is clear and the other shows....one node with single minute aggregate of Mart-1 immunoreactive cells in the subscapular location.. 

Now hearing they are both completely clear would have been my request however my body says different I guess.  My doctor says that this is not that bad.  I am a little concerned about where to go from here.  He basically says all I do right now is go for my CT scans (chest abdomen and pelvis) for a baseline and see me in three months.  He also says to watch for any changes in my body. 

I want to hear from anyone out there with any help with the following.... 

A) Does anyone have info on that lymph node biopsy info above?

B)  Did anyone out there start off where I am starting off right now? 

C) Second opinons are always important.  Believe me,I am a believer in that.  Although I trust the doctor I go to however I would like another eye to look at this..where to go on the East coast?  I was thinking Univ or Penn or Sloan or whereever someone tells me to go at this point. 

D)  I need a dermatologist for full body check.  Not sure about going to where I originally went for mole removal.  I feel like there has to be a Melanoma specialist specifically for that..I may be asking for a lot but I feel like a doctor that treats acne and Botox injections may not be for me?  I could be totally wrong but I searched specifically for that and nothing really comes up.

So much for wanting to be 1A or 1B or even 2.  I guess I am 3 now?  Ugh.  God help me with this..... 

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This abstract (published last month) has confirmed early indications of a survival benefit in a randomized phase 3 trial.

http://www.liebertonline.com/doi/abs/10.1089/cbr.2010.0865

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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heg50heg's picture
Replies 18
Last reply 5/15/2014 - 6:20pm

Leaning toword doing this treatment, instead of the wait and see aproach,as that does not make me feel like I am doing anything. Pros and cons or past experinces for or against this treatment greatly apprciated.

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Shelly in Switzerland's picture
Replies 1
Last reply 2/22/2011 - 1:22pm
Replies by: Vermont_Donna

I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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Shelly in Switzerland's picture
Replies 5
Last reply 3/1/2011 - 1:20pm

I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf inhibitor. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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I am on cycle 13 of the Roche b-raf trial, receiving the b-raf drug.  I have been responding the whole time.  Recently I have been experiencing a sense of instability in my left leg as well as poor balance because of it.  When walk my left foot slaps down and I have been tripping often as if I am not picking up my feet enough.  My last scans still showed "response" to the b-raf. 

Another side effect that has been bothering me is my arms, hands, and shoulders falling asleep when in any position that I try to sleep. the olnly way I can sleep is with sleeping aides.   My range of motion has been reduced drastically for someone who used to work-out a lot. s

Has anyone experienced similar side effects? 

Has anyone been on the "responding" list for b-raf and still developed brain mets?  My doctor seems to feel this is very unlikely but willing to do a brain MRI if I want one.

Thank you for your help.

Shelly in Switzerland, stage IV

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acyr's picture
Replies 6
Last reply 2/22/2011 - 11:10pm

Hi everyone,
Below is an update provided by Sharyn's husband Jim tonight regarding her surgery. As all of us who have come to know Sharyn, she has come out of this in true Sharyn style - we send her our best wishes for a speedy recovery and hope she can get back on her trial soon.

Annette

Hi everyone
Sharyns surgery went well this morning and she is resting in Special Care, in fact when I dropped in after work she was eating her supper, she seems a little brighter then she has for a while and is in very good spirits.
Well that's it for now, she should move into her room by tomorrow night or Wednesday then hopefully home by Friday.
Regards
Jim

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This abstract from 2009 claims that adoptive cell therapy is the best treatment (available in clinical trials) for metastatic melanoma.

http://www.ncbi.nlm.nih.gov/pubmed/19304471?dopt=Abstract

I recall reading about this in 2009 while my late wife was stage 4 and struggling with the side effects of chemo.

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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heg50heg's picture
Replies 17
Last reply 2/22/2011 - 5:10pm

hello , as of this afternoon I found out my results from brain and body scan and was happy to hear they all came back clear. this was good and bad news as now my chemo dr. says I have 3 options - wait and see and be examined basically do nothing more - do a year of interferon , I understand that makes you pretty sick - or participate in a clinical trial, unfortanately there is none going on at this time for stage 3 patients. Stuck trying to decide what to do, should I or not do the interferon. Had 1 lymph node infected at time of surgery. will it spread yet . many many questions and really confused what to do. any thoughts or comments greatly appreciated here.

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