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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sheri47's picture
Replies 3
Last reply 3/21/2012 - 4:55am

a little info first, my moms first mm was in 1982 left heal had it removed   stage 1 level 5.   2001 encased in a lymphnode in her stomach surgery no other treatment she refused it, 2005 back to the same heal. same thing in 2009, with surgery to remove,  still only treatment was surgery,

2011 back again same spot on foot, now they want to remove the leg under the knee , she refused that, took new drug that starts with  a Zo  was working but she stopped it said it messed her stomach up , now the found a 2 cm mass in right tempral part of brain one dr said yes its mm and one said he did not think so and he wwould not know unless he removed it,   all she heard was it may not be cancer and went home to do nothing  she she does not want to have surgery and she put it in Gods hands ,  so i guess this is my ?  with the tumor being 2cm  how long would she have  by doing nothing. thank you

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Richard_K's picture
Replies 1
Last reply 3/16/2012 - 11:26am
Replies by: Shelby - MRF

There is a 15-minute online survey (www.skincancersurvey.org) that includes questions about your diagnosis, the steps you’ve taken to learn more about melanoma, and what you feel could have helped you along the way.  The survey is also interested in hearing from those whose lives are affected by advanced skin cancer – so please feel free to pass the survey along to your family, friends and others who have advanced skin cancer too.

The MRF is a partner in this survey but I did not find any information posted on this site.  If it is, sorry for the duplication.

Dick

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Replies by: Anonymous, sheri47

Woke up today with small red spots all over my body, now growing and merging into larger red spots. Ugly.

Skin feeling very hot and a bit itchy!

Just like for Sorafenib which I had to stop.

Trying corticoïd cream but I suspect it won't be enough.

 

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Maxximom's picture
Replies 10
Last reply 3/17/2012 - 5:37am

4 days before I was due to start Ippi infusion # 2.. I started to get some nasty diarrhea (well I finally learned to spell the word..LOL) I prayed that I could drive to OSU and get through the treatment without having a problem and I did. The next day,last Friday.. I had the start of really big time watery blow outs and was started on 20 mg of Prednisone..the diarrhea has not really abated very much.. it seems to come in waves.I take the Pred at 10am and for the most part I am usually pretty good most of the day and then start again at night. Yesterday Dr Kendra had me come down to OSU to check me out. I ran the recommendation to use Endocort (thank you NY Karen) by Dr Wolchok at Sloan Kettering past her. I always hesitate to mention what another doctor suggests..and I know that you have to be very diplomatic.. but I did it and she was most receptive. Dr Kendra said that she was in regular communication with Dr Wolchok and was not familiar with using the Endocort for the Ippi induced Diarrhea and would call him and get back to me..mission accomplished! Meanwhile she had me add another 10 mg of the Pred to take at 10PM . She is taking this very seriously. I hate being on the Pred as I am Diabetic and It messes up my blood sugars and I have to really ride herd very carefully on them.I just want to get off the Pred as soon as possible so I can go on to Ippy #3 in2 weeks..also I haven't been able to leave the house for 10 days.. I need to be near a toilet..I also need to sleep through the night..sigh

Joan

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jag's picture
Replies 4
Last reply 3/18/2012 - 1:20am

I am officially 4 years cancer free, I asked him about the radiation/IPI effect half jokingly and he said it definitely could have a self immunizing effect. The radiation damages the tumors, which are then exposed to a hyperactive immune system which will attack it and learn and then when it does that, it goes after the other tumors. They are going to have a large study with ipi and radiation. I was just thinking that if I had were getting ipi and wasn't responding, It would definitely be worth investing time in researching a way to get radiation.
J.

Insert Generic Inspirational Motto Here

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I am a family nurse practitioner who's good friend lost his mother to melanoma.  He was nine years old and his mom was in her early thirties.  Despite this family history and my friend's objections, his two daughters (both in their 20's) regularly tanned both on the beach and in tanning booths.   Their parents dragged them in to a dermatologist during their late teen years, who neither discussed their family history, suntanned skin, nor UV radiation exposure; and who told them to come back for another skin check in 5 years.  Needless to say, my friend and his wife were filled with dismay.  

I am also a board member of the National Academy of Dermatology Nurse Practitioners, because it is clear that melanoma is optimally  treated when detected early...and, primary care nurse practtioners and their patients are the people who need to detect melanoma in its earliest stages.  Because 41% of  patients in the U.S.A. lack access to dermatology specialist care, it is imperative that the public and primary care providers know everything possible about melanoma detection and treatment.  

There is no reason that only dermatology specialists should limit information to generalists or the patients and their families.  For this reason I invite everyone who wishes to learn more about current Melanoma treatment options, dermoscopic surveillance for skin cancers, treatments of other skin cancers, and Melanoma research to come to our conference in Clearwater Beach, Florida.  You do not have to be a nurse practitioner or medical provider to attend.  We welcome you to become empowered, check out the program and consider taking an educational trip where you can hear what leaders in the Melanoma treatment world say to other healthcare providers about Melanoma and other skin cancers.  Here is the web address: http://www.nadnp.net/conference-overview.html

I look forward to meeting you at this wonderful conference on the beach in Florida....Sunblock and Sunblocking Clothing required.

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yoopergirl's picture
Replies 9
Last reply 3/26/2012 - 2:27am

I had my eyes checked again yesterday and I still have the Uveitis and am back on the prednisone drops and dilating ones, he said that I should not have the last infusion if they suggest it at the Carbone Cancer center next appointment, I said the Oncoligist never mentioned the side effect with my eyes at our meeting so will have to mention it to him. I have read that only 1% of people get this while on the drug. I am looking for any input on this. If these drops don't help by next Weds then he may have to put some shots in my eyes, something that I just cringe at so hoping and praying that the drops do the job.  

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MaryD's picture
Replies 15
Last reply 3/18/2012 - 9:30pm

I always preface a post like this by saying that I will never take this news for granted and am so humble to be a stage IV survivor and able to share it.   Today I had my six month scan and was fortunate to find out it was clear again.    Eleven years, 5 recurrences, and 5 treatments (INF, vaccine trial, radiation, Ipi, and 6 mos of pulsed IL-2) later, I am now able to celebrate a 3 1/2 year anniversary since my last recurrence.

Having been on this board for almost all of those eleven years, I have seen many losses, victories, and met some truly amazing people along the way.  I can only hope that this kind of news gives hope to those that need it on this journey.

And now I will get myself a nice glass of wine!   :) :)

Best to all . .

Mary

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LynnLuc's picture
Replies 3
Last reply 3/15/2012 - 5:34am
Replies by: aldakota22, MaryD, melmar

My scans are fine, blood work fine...had my treatment...here is the skinny I will share...
Saw Dr Weber and he thinks my rash/hives on my hands and soft parts of my feet of
probably side effects from Anti-PD-1. It has been there since mid December.
He says I am doing fantastic and would hate for me to stop...I told him I
can live with it...but so far my hands and feet have NOT gotten worse since
my infusion today, so I am hoping it is NOT related!
....in my trial it is required to be NED ( no evidence of disease)
which could be by chemotherapy, surgery or immunotherapy or radiation.
Some who enter the trial start right out of surgery and such, so their NED
is somewhat questionable, if you know what I mean. Anyways, 29 people
are/were enrolled. 2 progressed and died of brain mets.
1 progressed and was put on another immunotherapy and is again NED. 1
progressed ( and this is the kicker....he now experienced spontaneous
REGRESSION of his melanoma! 25 remain stable and NED.
This is week 72 of my Anti-PD-1/vaccine trial (MDX 1106)

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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ElaineLinn's picture
Replies 5
Last reply 3/16/2012 - 9:22am

Its been a while since I have been on here to update you all. But it has been a hard few weeks in the hospital. I finally got to go home on Monday. I decided to do a part of a clinical trial called Bendamustine , I had to have 3 IV infusions before the brain surgery , then after the last infusion I had to go directly to surgery.. So far so good very little sideeffectrs But still particially blind because of the tumor, but the dr. seems to think that my sight willl return, but if not I am ok with that as long as I am alive to raise my kids. They put my IPPI on hold untill after the radiation on the brain then I should be back to that. Lets pray that the 2 IPPI will cure my lung mets so I can work on this brain now . Thank you all for your thoughts and prayers. Also I am sorry for all the miss spellings but I cant see to well LOL

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Replies by: aldakota22, deardad

This is quite a good start! A neck lymph node almost gone as well as a small met just under the skin. Can't tell about the tumors deep inside lungs and other places but why should they behave differently?

Part of me has wild hopes that this may work 100%...but part of me prefers to be prepared to a future set-back in order to avoid too much disappointment.  

This Braf stuff seems a bit sci-fi to me - IT IS JUST TOO EASY especially after 3 years of chemos and ipi. CAN'T BE TRUE!

I'd rather take as litle of it as possible (having heard about potential NRAS mutations and dormant cancer cells possibly being activated by the drug).

Doctors say that minimum treatment is 2 months even if everything seems to have gone.

I'd be happy to hear about your experience with duration of Zelboraf intake and effect!

 

 

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Kimberly Duncan Watts's picture
Replies 3
Last reply 3/15/2012 - 6:51am

Wow I couldn't believe they were so big. No wonder I had such pain! Thx to all for your responses! I appreciated each of them. Hoping now I really am NED! Appt at Roswell the 21st, will ask about radiation. And I've never been tested for ckit so that's next too! Prayers n positive thoughts to all.

I can do all things through Christ who strengthens me.

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ad2424's picture
Replies 5
Last reply 3/16/2012 - 3:47pm
Replies by: TSchulz, NYKaren, cltml, ad2424

I did a course of IL - 2 in December. This was myu first treatment of any kind. I have lung nodules measuring 7 mm and smaller. I tolerated 8 bags week one and 5 bags week two.

I had a scan 6 weeks after treatment which showed stable disease and a scan 12 weeks after treatment which also showed stable disease.

My question is whether or not to do a second course of treatment or not.

My doctor (Dutcher, St. Lukes Roosevelt in NYC) is recognized as one of the foremost experts in renal cell carcinoma, and also treats patients for melanoma. She has treated over 500 patients with high dose IL - 2. Her opinion is that I am a resoponder, that there is no data to show that doing a second course of treatment has proven benefit, and that I should scan in another 3 months.

I know many doctors recommend a second course as standard protocol. Does anyone know if there is data to show a second course of treatment has benefit? Thanks.

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himynameiskevin's picture
Replies 11
Last reply 3/17/2012 - 7:57pm

Tomorrow I'll be one week into Zelboraf. So far so good I think. No noticeable side effects yet, possibly some fatigue and weakness, but I've been experiencing that quite a bit the last two months as my sleep schedule and normal activity have been out of sorts, and with the other two meds I'm on. I've been avoiding the sun as recommended. I think being on the drug has done a lot for me mentally, doing something proactive has me feeling pretty optimistic and hopeful.. I've been feeling close to my ol' self the majority of this last week. This morning though about 20-30 mins after my dose, right before breakfast, I suddenly felt fatigued and kind of shaky. Having two seizures a month and a half ago, the fear of having another or not knowing this feeling I was experiencing.. paranoia and anxiety arose and I think was making it worse. I stayed calm, breathed deeply and the feeling faded after a few minutes, but it's kind of left me shaken me up today and has made me a bit nervous. I read that there is a rare side effect with Zelboraf that can effect you heart rate or something that can lead to dizziness and fainting. Sounds scary... not helping with this nervousness I was just getting over... But hopefully it wasn't that.. maybe it was nothing.. maybe it was a mini anxiety attack, maybe I didn't drink enough water with the dose, or maybe it was from a lack of a good nights sleep and an empty stomach.. I don't know. :/ Anyway, besides this little thing today, I'm feeling pretty good all things considered. I've got an appointment with my oncologist in a week to schedule scans and what not. Hopefully they'll say something good. And that's it for now. As always, thanks for the support, thoughts, and lending listening ears from time to time. It is all so appreciated. -Kevin  

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Judy D's picture
Replies 5
Last reply 3/20/2012 - 6:20pm

Thought I could go to Hawaii with my daughter especially if I was carefull, WRONG!  I stayed under the umbrella, used high spf sunsreen but still got severely burned or more like sun poisoned.  Severe blistering on my feet, swelling and rash on arms and back. I just want to warn others to be extremely careful so that this wont happen to you.  Vacation to Mexico not going to happen.

Phillipeans 4:13 I, we, you can do all things through Christ who strengthens me.

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