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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rbruce's picture
Replies 3
Last reply 3/19/2012 - 11:44am
Replies by: Linny, silvia123, rbruce

Has anyone seen this?  http://www.tgdaily.com/health-features/59537-treating-cancer-with-viagra  I heard in my support group that viagra was being used by some with breast cancer but this is the first time I've seen anything about it's use with melanoma.  I sent the article to my Oncologist at UCSF and he said for me to check with my trial coordinator to make sure it doesn't interfere with the Clinical Trial I'm on and then try it!  Has anyone heard of this? Does anyone have an idea of doseage?  It's obviously an off label use and I'm just wondering (please don't laugh) if I can take a low dose so as not to cause me to be have the full "Viagra" effect but have some therapeutic effect.  Anyone have info?    Thanks,   Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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AlisonC's picture
Replies 4
Last reply 3/19/2012 - 3:39am
Replies by: AlisonC, DonW, Phil S

A good friend is having WBR and temodar for recurrent brain mets following Novalis and craniotomy in November.  He's completely exhausted and very confused - having a hard time remembering what took place even an hour earlier.   Scary for him and so hard for his wife and caregivers.  Can anyone give an idea of how long that lasts for ?  The confusion has been sudden so seems WBR related.  Does it stop when the WBR does ?  Does it get better after a week or two ?  Any tips for caregivers welcome also. 

AlisonC

Stage IIIB

NED since 2001  

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rbruce's picture
Replies 14
Last reply 3/19/2012 - 12:55am
Replies by: melmar, Anonymous, rbruce, boot2aboot, LynnLuc, audgator

just checking in to see if anyone has any results or comments to share from Merck's pd1 trial?  I start next week and would like to keep in touch with others n the trial.  Thanks, Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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ScienceDaily (Mar. 8, 2012) — Researchers say they may have discovered a new drug for the treatment of metastatic melanoma, one that uses the patient's own tumor cells to customize the therapy. The findings are published in the March issue of the journal Clinical Cancer Research.

The drug is sunitinib, which has already been approved by the FDA for the treatment of kidney cancer and gastrointestinal stromal cancer. In this Phase II clinical trial sunitinib proved effective against rare forms of melanoma that occur on parts of the body that the sun doesn't hit -- such as the mucosal surfaces of the mouth, the soles of the feet, and the palms of the hand.

"This form of skin cancer is particularly difficult to treat because it is resistant to chemotherapy, one of the standard therapies for most forms of cancer," says David Minor, MD, Director of Inpatient Oncology at California Pacific Medical Center -- part of the Sutter Health network -- and the co-author of the article. "Studies show that single-agent chemotherapy only produces a response rate of between 5 to 20 percent in patients with this form of cancer. So having one that produces a response of more than 50 percent is a big advance."

The forms of melanoma that were targeted in this study all have mutations in a gene called KIT, the tyrosine kinase receptor gene. The mutation makes an abnormal protein which then drives the growth of the tumor cell. Sunitinib works by turning off that protein and slowing down the cancer growth.

The researchers tested sunitinib in ten patients with advanced stage 4 metastatic melanoma who had the KIT mutation. Of those ten, four were able to complete the trial. Three of the four responded positively to the medication; one had a complete disappearance of her liver metastases for 15 months; the other two had remissions of seven months and one month.

"We need to be cautious because of the small number of patients involved in this trial," says Mohammed Kashani-Sabet, MD, a senior researcher at the CPMC Research Institute, Medical Director of CPMC's Center for Melanoma Research and Treatment, and the co-author of the study. "However, these results are encouraging because they are far better than we would expect to see with chemotherapy for this form of melanoma, and for this stage of the disease."

The researchers say that melanoma, like all cancers, is different in different people and that there are different gene mutations depending on the form. By identifying those who have the KIT mutation -- and sunitinib would not help a patient unless they had that mutation -- they are able to personalize the cancer therapy.

Because it has already been approved for the treatment of other cancers sunitinib has been well studied in larger patient populations. Side effects can include fatigue, low blood counts and a rash, but it is otherwise well tolerated by most people taking it.

The next step is to test the drug in a larger multi-center trial, possibly even involving patients at an earlier stage of the disease.

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

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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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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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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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I am a stage IV warrior and I can offer some bits I have learned. First I am so proud of this room and what it does for us.

I have been in a Phase II/I study with BRAF/MEK, with my stage IV metastatic Mel, for 15 months now. Tumors vanished except for a pea sized critter in my lung. Someday, somehow I want to fight my way to NED like so many of you.

When I had the two diseases above, both from melanoma, the thing that worked was Crisco (the white stuff in the can) to relieve the itch. The expensive prescriptions failed me. Just take a handful and rub it everywhere below the neck. It will soak in and give relief as it moisturizes the skin. Moreover it is durable for about 10 hours. If you wait about an hour before you go to bed, it won't even stain the sheets.

EN makes your legs look like a pair of tights loaded with door knobs. Then it turns to a multicolored bruise, and finally leaves. About a month for the whole cycle with me. It is our immune system getting ramped up again spoiling for a fight, and it came after me. My oncologist was surprised it hit me in the 13th month, instead of earlier, and the dermatologist was happy that my immune system was working so well. It goes after subcutaneous fat in the extremities and it made my lips look like I kissed a steam pipe. There is a lot of high excitement connected with fighting this disease.

The history of the world is the battle between superstition and intelligence.

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LynnLuc's picture
Replies 2
Last reply 3/17/2012 - 4:57pm

I just rec'd e-mail from a fellow warrior and he had done a interview with BSK ...John Patrick Michael Murphy....

http://sto-online.org/node/27816?tid_op=or&tid=All&tid_1_op=or&tid_1=All&tid_2_op=or&tid_2=141&field_asset_search_value_op=contains&field_asset_search_value=John Murphy

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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I hope this works for MEK inhibitors as well.  Looks like they are getting closer and closer.  Lets all pray that this the year.

 

http://www.sciencedaily.com/releases/2012/02/120228185828.htm 

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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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eerye70's picture
Replies 13
Last reply 3/17/2012 - 1:25am

http://www.caringbridge.org/visit/kelliedykstra  I have been following several warriors on here for some time. I just loved Kellie's personality and fighting spirit. It seems as if melanoma grabs hold of the most amazing people. Kind of makes you want to be dull and boring for protection. Anyway, i get Caring bridge updates on her and her sister updated the caring bridge site of her passing. I waited to see if there would be an update here and when it didnt happen, i thought i would post. I don't want to overstep my bounds, but i thought some who had been following her posts would want to know. She was on another trial and at home with family doing well. Her last post was at Valentine's day. she had been updating almost daily, and it seemed as if the worst was sleepiness and nausea. But then when she didnt post for a week, it was not good. Seems she got admitted to the hospital for pain control and then taken off the study and went home with hospice. Her sister said her passing was painfree and peaceful with her family around her.

Again, i didn't want to overstep anything, i don't know her personally but i felt like she was family and i thought others might want to know. Debbie

Time to put on your big girl panties and deal with it!

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Tim--MRF's picture
Replies 20
Last reply 3/16/2012 - 7:14pm

Many of you saw the NY Times article this past Sunday, describing cousins, both with Stage IV melanoma.  They both enrolled in a clinical trial of PLX4032--the BRAF inhibitor by Plexxikon/Roche.  One cousin received the BRAF inhibitor and is doing well.  The other, who received the control, has died.

This raises a lot of questions about clinical trial design.  Our Scientific Advisory Committee has engaged in a very robust online discussion about this, involving about 150 emails!  I wonder what your opinions are on this.  Here are a few questions:

--Is it ethical for the control segment of a clinical trial to be a therapy that is approved, but is almost certain to be far less effective than the drug being tested?  (But, if you don't use a control, then how can you be sure the data are real and not because the patient or treatment team acted differently because they thought they were on a miracle drug?)

--If a person on the control arm does not respond to the approved drug, should they be allowed to "crossover" and get on the drug being tested?  (But, if you allow crossover, then the data for overall survival benefit is compromised, possibly limiting the future approval of the drug.)

--It seems clear that drugs in development right now are showing more promise that drugs that are currently approved.  If this is the case, is it ethical for a doctor to put a patient with metastatic melanoma on an approved treatment without first discussing the option of clinical trials?

If this post results in some robust responses I will work to get this input to the FDA and to the researchers and industry people involved in these trials.

Tim--MRF

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WTL's picture
Replies 23
Last reply 3/16/2012 - 6:52pm

Hi everybody - "A small hypermetabolic left supraclavicular focus without a definite CT correlate is of unknown etiology." This was the only abnormality on PET/CT scan for newly diagnosed melanoma on right calf. No suspicious enlarged nodes identified in the neck. Biopsy: superficial spreading, Breslow's 0.55, Clark's level 3, mitochic index 2/sq.mm, staged at IIA.

My dermatologist told me nothing - he passed me off to his PA, who seemed somewhat knowledgeable, removed a basal cell carcinoma but left the melanoma (a lot of it was removed in biopsy - don't know the method used). She said that it wasn't nodular but had a small nodule raised above the skin, and because of the Clark's level I would need to be staged (again?) - from web searching I got the impression I could also be at stage IB, and that Clark's level is not that great a tool.

Do I need a biopsy of that node in my neck? I read that leg melanomas usually spread to the nodes in the groin. So what are the chances that the neck node is melanoma?

What concerns me is that the PET/CT did not pick up my prostate cancer, which I know is small and has always been contained in the gland (the PSA is only 1.17 because there's not much of the gland left after two HIFU treatments, soon to be a third). So I have to wonder how accurate the scan is if it didn't see the PC (but it did see my plantar fasciitis!). Could the PC be the cause of that hypermetabolic node? What are the chances the node means no metastasis?

I seem to be on my own (had to find and set up the PET/CT scan), trying to find an oncologist, get in to County-USC (up to 2+ months wait), or City of Hope or UCLA. The PA said they don't deal with melanomas that can't be easily removed in the office, nor did they give me a referral to an oncologist ("we don't know any").

And I have no insurance, 6 months shy of Medicare. I'm up at 4 am worrying - the prostate cancer was scary enough (and has taken a lot of our savings), melanoma is scarier. Sorry to go on so long - trying to give as much info as possible, and have no one to ask, so all I do is search the web and make phone calls trying to get consultation and treatment.

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