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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Linda/Kentucky's picture
Replies 6
Last reply 1/18/2011 - 10:23pm

Although it has been a while since I have been on here due to things taking a bad turn, I just wanted to post one last post in memory of my loving husband John.  John was carried by angels to his home in heaven Tues Jan. 11, 2011 at 11:15 p.m.  He struggled with this ugly disease almost 14 months.  We said in the beginning of treatments that we would pray about what direction to take and never look back and wish we had changed something or done differently because we KNOW  God led us the way He wanted us to go.  Our faith stood strong throughout as John never complained or shifted blame on the Lord as to "why" this was happening to him, his response when diagnosed was "why not me, I'm no different than anyone else"  That was the kind of man he was.  I, however did question from time to time.  He only took two different treatments.  The first was high dose IL-2 which didn't do anything for him and the Ipi compassionate trial which also did not do anything for him.  I hope by him participating in this clinical trial it helped in someway with getting it approved.  I know it can/will be a successful drug for others.  It just was not meant to be for John.  As far as the side effects he felt from ???? cancer/treatment throughout was severe total fatigue/exaustion.  Even though he had the cancer in his lungs, liver, throughout his bones he took ibuprofen up until about 2 months ago.  And uncontrollable pain for 1 day.  We truly feel blessed by this.  I pray daily for all those going through this unfortunate journey and will continue to remember you all.  It's a journey nobody should have to take but if you know the Lord as your personal savior you know you have a home waiting for you in heaven with a glorified body.  The physicians on earth may not have been able to heal John but the Great Physician in heaven has wiped out every cancer cell in his body and restored him to what he was meant to be.  Again my prayers are with you all, good luck with any treatment you take, keep your head up and be encouraged that all things are possible with God~~~ 

Linda/Kentucky

Please know my intent on this post was not to discourage anybody but to encourage them to never give up hope.  I didn't!!!

  

I can do ALL things through Christ who strengthens me! Phillipians 4:13

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djpayn's picture
Replies 2
Last reply 1/22/2011 - 10:18am
Replies by: EricNJill, Amy Busby

im hoping that someone can give me advice about using fentanyl patches. i have been using one (100mcg/h) for about 6 months now. in the past few weeks,  i have begun to notice that by the second day of wearing the patch, my pain becomes stronger and i have wierd sensations in my legs - almost like restless legs but not quite as severe. i start taking my breakthrough meds on the second day which helps with the pain, but also relieves the sensations in my legs. i hafta take the pills the second and third day of the the patch, but once i change the patch on the 3rd day, i feel fine again.... for abt 2 days.

dont know if anyone has experienced this before but im hoping someone has some advice. i have been on a wide assortment of pain meds in the past 2.5yrs, and feel the patch works best, but am wondering if this will get worse over time. im not opposed to talking with my pain specilist about a med change, i just really dont want to. the patch has been instrumental in makin my pain and life manageable and feels like im back to my old self.

thanks for any help.

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paleskinisin's picture
Replies 6
Last reply 1/19/2011 - 9:38pm

A melanoma warrior has moved to NC due to husbands military orders.  She is stage IV and in desperate need of a good doctor.  I was hoping to find some recommendations for her.

Thank you!

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There is a new application created by Marty Tenenbaum, an E-commerce guy who has melanoma. Here is the link to the article as well as the application...looks interesting!

http://www.washingtonpost.com/wp-dyn/content/article/2011/01/16/AR201101...

http://therapy.collabrx.com/

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/20/2011 - 11:49pm

I have some new liver mets and was wondering what are the most effective treatments for liver mets.  I do not think they are good candidates for surgical removal, it is more multiple areas of uptake spread throughout the liver.

Any ideas?

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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Linda J's picture
Replies 2
Last reply 1/18/2011 - 8:59pm
Replies by: Carmon in NM, LynnLuc

I just was about to start th braf/mek combo trial this week when the routine MRI showed 5 small brain mets-the biggest is 1cm (is that still small)? The pet scan also showed activity in my bones, spine and nodes, along with the 20 subqs that i have been getting since mid December. The plan right now is WBR this weekend, then chemo until the braf trial that targets the brain as well opens up in Canada in six weeks.
Is it a good sign that the Mel isn't in any organs other than the brain? Are bone mets bad? I feel like the Mel went totally crazy within the past few months as I had a clear pet scan in august. Am I too far gone? Can I still slow it down and beat it?? I am 31 and have a 2yr old miracle son. I told my doctors that I am going to be one of those miracle patients that they tell their other patients about.
I would really really love to hear some success stories from those of you who have had brain and bone mets. I need some reassurance that I can still beat this despite how aggressive it seems to have become.

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Insert Generic Inspirational Motto Here

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Tracey FL's picture
Replies 2
Last reply 1/18/2011 - 1:04pm
Replies by: Sharyn, KatyWI

Mom is going to MD Anderson on the 27th for a consult on the ipi.  She is stage lV brain, lung and multiple mets in torso.  She has 4 more WBR treatments then off to Md Anderson.  I would like to know how often the treatments are and how are they given?   Is this a trial with different arms that you don't know if you are getting the drug or not?  She seems so week now and is over 70.  She has done two different trials without success, both vaccine types the last one being PD-1 then chemo.   What a strong gal she is but in the last 3 days I have seen such a change in her for the worst.  Could this be from the WBR?  Thank you all for your help with my questions.

Tracey

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KatyWI's picture
Replies 6
Last reply 1/22/2011 - 2:10am
Replies by: kylez, jag, KatyWI, NicOz, MaryBZ, Janner

It looks like the cyberknife I had on my brain in November was successful on 3 spots and not so much on the fourth.  After three doses of Ipi, it's swelled up and "looks" like it's growing (though as we know know with ipi you can't really tell initially!).  The plan is to remove the offending brain met in a week.  I'd really like to hear from some of our craniotomy "experts" (John?  Nic?  How many have you guys had between the two of you - twelve or something!  j/k, but I know it's a lot.)  Can I have some advice?

What should I bring to the hospital for "comfort"?  What should I have prepared at home?  I know the doctors will "tell" me, but how long might I *really* expect to be useless/recovering?  Anything else I should know?

Thanks, I appreciate it.

KatyWI

Just keep going!

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Linda J's picture
Replies 3
Last reply 1/18/2011 - 6:55am
Replies by: Fen, Vermont_Donna, Cate

Well, after routine scans for the combo trial I was supposed to start on Wednesday, it turns out I have 5 small mets in my brain which puts that plan on hold. I have had no symptoms of the brain mets. I also had a clear Brain MRI in august. I am scared at how quick it is moving.
The PET showed spots in my bones (arm, shoulder, leg, spine) as well as nodes and subqs in my hips and legs.
The goal is to do WBR this week, start a chemo to stop the aggressiveness and then get into a braf trial that is opening up in Canada in six weeks that also targets the brain.
I am devastated. But hopeful, but scared
I am 31 and I have a two year old who needs me to be in his life for at least another twenty years.
Have people lived through worse situations?????????????? Can I still live????

If you would like to get hold of me directly, please email at lindajoyt@yahoo.ca

I need some encouragement today :-(

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filmer's picture
Replies 15
Last reply 1/20/2011 - 10:01am
Replies by: filmer, Charlie S, LynnLuc, King, Anonymous, Vermont_Donna, NancyD

I'm a 60 year old in great physical shape...except for the melanoma. I am looking for someone in a similar situation, or someone who can give me advice on my immediate path to prevention of a recurrence.

I was diagnosed with melanoma on my right calf in Oct. 2008. It was removed  by wide excision and my sentinal lymph nodes (right groin)  biopsied. The biopsy results were negative. 

Recently, I noticed swelling in the groin lymph nodes that were biopsied. I had surgery on dec. 8, 2010 to explore, and if necessary remove affected nodes. Melanoma was found in one node and a few others were suspect and were removed. 

Now, my surgeon and a medical oncologist he recommended at Mt. Sinai in Miami Beach have recommended Interferon treatment. Unfortunately, it did not seen a very palatable course of action due to the 3-5% success rate and the debilitating side effects and damage caused by it.

To get a second opinion, I have been to the Moffitt Cancer Center in Tampa, Fl. This is where my confusion starts.

The Dr.'s at Moffitt have a different philosophy: They conferred after reviewing all my records and tests and decided my recent surgery was "incomplete". They want to go back into the same area and "clean out " all the lymph nodes in my groin AND my pelvis on Feb. 10. My problem here is that I do not feel healed from the recent surgery (I still have a drain 6 weeks later) and they tell me there is a 30% or better chance of  serious "wound problems" with this surgery. I need some help with my decision . Has anyone out there been in my shoes?

Many Thanks!

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Solodad's picture
Replies 6
Last reply 1/17/2011 - 8:03pm

Apologies if there is already a thread on this. I tried searching for it, but couldn't find anything.

That said, I'm interested in knowing if anyone is/has been on the clinical trial for Ipi as an adjuvant therapy. It is a randomized trial with a placebo arm, so you don't really know if you're getting the Ipi or a placebo.

If you're in this trial,  I'm specifically interested in whether or not you can tell if you're getting the Ipi or not. 

Thanks.

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Nebr78's picture
Replies 5
Last reply 1/22/2011 - 10:32pm

I haven't been here for awhile. I am now taking strong radiation treatments for nearly golf ball size lumps on side of face and chest near armpit..  I just have 2 more treatments left. I am eating pain pills from the lump on side of face. Real sore.  My second Dr. recommended that I not take radiation, but a cancer nurse encouraged me to go see a radiation Dr.    I am now between a rock and hard place.  I don't know whether I should  ever go back to the second Dr. or not.???  I can't take anymore chemo because of serious heart disease.

I don't know what to do if the lumps don't go away. I was sort of waiting for this Ipilimumab chemo but FDA has put approval off another 3 months.

I really don't think they are in too much of a hurry to find a cure.   Big Business

Has anyone ever had big lumps treated with radiation?    Thanks

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Lisa - Aust's picture
Replies 4
Last reply 1/18/2011 - 12:35am

Hi Everyone,

I was hoping id never have to come back here asking for help but here goes! My name is Lisa and i am from Perth. My boyfriend Craig was dx'd in 2007 with stage 3. Had radical neck dissection, radiation and a some interferon (didnt tolerate it well). So everything was going well up until his latest scan in December just gone (which was going to be his last). His PET showed 2 spots, one on his 7th rib postero-laterally, and one in a lymph node next to his duodenum. So this was quite a shock for us all, including the oncologist (Prof Millward). The unfortunate thing was that his last scan did show a faint shadow on his rib, but after double checking with the radiologist, Prof decided it was nothing to worry about - an old sporting injury maybe. So i guess the good news in all this that it seems to be slow moving. In 11 months it has only gone to that other lymph node (which is 2cm).

So Craig has had radiation on the rib - only 5 days, pretty trouble free, and we found out a couple of weeks ago that he has the BRAF mutation which was quite a relief also. He also has another mutation that Prof has never seen before (of anyone, it is very typical of Craig to have it!!). I am interested to see if anyone else has heard of it, and its association with Melanoma? My (very) quick research hasnt found much, apart from something to do with colon cancer?? The code for it is G606R.

So luckily enough there is a new trial starting here today! Craig will be the first person starting on it in Perth. The title of it is "A Phase III Randomised, Open-label Study Comparing GSK2118436 to DTIC in Previously Untreated Subjects with BRAF Mutation Positive Advanced (Stage III) or Metastatic (Stage IV) Melanoma. GSK Protocol: BRF113683

I was wondering if anyone is on a similar trial and could give me any insight? Since Craig was diagnosed i have been keeping one eye on all the new stuff going on, so i have a bit of an idea, but its alot to take in and any info would be great.

Thanks very much, and i hope everyone out there is going ok

Lisa - Aust

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carol b's picture
Replies 9
Last reply 1/18/2011 - 7:59pm

Tomorrow i go to see if i have any mets anywhere. I cant remember how long one last. i have had one before with the breast cancer but i just cant remember. Guess its the drugs im on now. I also get my 3rd biopsy. Its to check if im B-RAF positive. My Dr, said the surgeon might take out a lymphnode but it seem like they would want to do the petscan and then the biopsy,,i dunno...ive had my night meds and ranting. my minds going 100 miles an hour. Im scared to death about the petscan. Im not sure if i could handel having cancer any other place than i have already. My tumor under my arm is over 4 inches wide and my nodes r all matted together . I just want them to go in and yank it all out...ne way...sorry for ranting but i know all you wonderful people understand me when no one else does,,I thank God for this board and i pray for all of you to be cancer free someday SOON

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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