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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alicia's picture
Replies 15
Last reply 1/30/2011 - 5:35pm

Hello everyone I just got back from Vandy a few days ago and recieved pretty good news from my path results.  There was no evidence of melanoma in my lymph nodes however the melanoma tumor was thicker than previously thought.  there was 2.3mm of residual melanoma on the skin they excised but got clear margins.  I guess one the questions i forgot to ask my dr was do they add the 1mm of melanoma they removed with the biopsy to the 2.3mm to get the total depth or how does that work.  He said this was a thick melanoma and puts me at a stage 2 for this primary.  This is my third primary melanoma BTW:(  The first mel I had 4 yrs ago was 2.3mm at least and spread to one of my lymph nodes.  and then in July of this year I had a thin 0.59mm melanoma clarks level II only treated with wide excision.  I do have another question about my SNB this time.  The first surgeon I was referred to said that since I have already had surgery to my left groin to remove some lymph nodes (due to first mel being on left hip and +SNB Lt groin) that lymphatics had been disrupted and a CLND needed to be done because it would be impossible to find the SN by doing the lymphoschintigraphy or blue dye test.  Well I then get referred to Vandy because my surgeon feels it would be best I see a mel specialist to do my surgery since i'm only 28 yrs old and this is my 3rd primary and the surgery could be complicated since scar tissue in left groin etc etc.  Well the mel surgeon at Vandy says no we will do SNB only and not CLND so day of surgery we do the injection and the nodes light up in both groins so he removed 3 in left groin and 1 in right groin.  While i am so excited that all came back clear of melanoma I still worry at times if he could have missed the true SN as the first surgeon said there is no way of finding it by doing the dye test cause lymphatics have been disrupted.  Sorry to ramble when most of you are dealing with way more serious issues than me.  I just dont know who to talk to about these details and you all have experienced this first hand and truly understand what this feels like.  I go see my oncologist here at home in a couple of weeks.  The mel surgeon said he wouldn't recommend interferon since i've already been there done that but he thought a PET scan needs to be done since I need to be followed as a stage 3 patient and this melanoma was pretty thick.  He also mentioned doing US surveilence of nodes and do FNA if there are any suspicious areas.  Thank you again for your time.

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Nebr78's picture
Replies 4
Last reply 1/30/2011 - 4:31pm

I have been reading a lot about Oncovex.  I have heart disease so cannot take strong chemos.  Does anyone know it Oncovex has side effects.  I am currently having radiation on a lump on my face and chest.  I have stage 4 melanoma.  I am inquiring about a clinical trial in Omaha, ne.  I need something quick as my Cardiologist thinks i have more blockage on front of heart.  That would mean another heart cather and stent(s).  Maybe I am too old to get into clinical trials. I am a male 79 yrs. old.

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triciad's picture
Replies 8
Last reply 1/30/2011 - 4:11pm

Hi All,

I'd love to hear what you all have to say regarding scans. 

I was diagnosed July 09 at 3B.  Surgery and a year of Interferon have been my treatments.   I am scheduled to go for CT of abdomen, chest, and pelvis next week.  My concern is what about a brain MRI?  I guess with all the talk here about brain mets, I'm a little nervous.  I asked my oncologist about the brain MRI, and he said it was not necessary.  Supposedly, all my blood work was good.

My last scans were last February, so it's a full year of not knowing.  What do you all think?  Should I be concerned?

Thanks so much for your advice.  You've been such a great source of support, strength, and knowledge throughout my journey.  It's sad to say, but I trust you all more than my doctor! 

Thanks for any words of wisdom you can offer.

Tricia 

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Gwen in Maine's picture
Replies 21
Last reply 1/30/2011 - 2:43pm

Hello Everyone,

I've been reading the forums for a few months now and am grateful for such a supportive place to post.

Here is my history. I've been dealing with Melanoma for almost 2 years now - diagnosed 2/09, at 47, with melanoma in lymph node on my neck, unknown primary. I had false positive spots, via PET scan, all over my body so they took time and biopsies to make sure it was only in my neck. Surgery in April to remove the lump and surrounding lymph nodes, diagnosed IIIc. A month later I had five sessions of high dose radiation to the area and a month after that, started 1 month of HD interferon followed by 11 months of low dose interferon. I got through it ok, but it was not easy. Ten months into the LD interferon, I noticed 2 small nodules at the midline front of my neck. They thought it might be scar tissue but took a biopsy and it tested postive for melanoma. I had surgery in August, 2010 and the margins were clear. Before all this happened I had never had surgery in my life and have always been generally healthy and active.

There aren't many treatment options for me at this point. So far I've opted for watch and wait with scans every 3-4 months. I've also focused on eating a macrobiotic diet, which makes me feel like I'm doing something. Last week I found out my latest PET-scan was clear, thank goodness. My doctor talked more with me about doing the Leukine treatment. From what I've heard, the data isn't solid about whether it's helpful or not. Basically if I did it, it would be for the sake of trying anything that could possibly help it from coming back and spreading. Right now I'm feeling great though, and am hesitant to start something  that might make me feel as bad as I did on interferon, for only a little hope it could help. On the other hand, I've read that the side effects of Leukine are not as bad.

I'd appreciate hearing from those of you who have tried Leukine and what you thought about it.

Thanks so much,

Gwen in Maine

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lhaley's picture
Replies 6
Last reply 1/30/2011 - 10:00am

I go to a melanoma specialist and a local oncologist. Last visit to Charlotte the PET/CT scan showed a slow growing nodule on the lung. I go in 2 weeks to have another PET/CT.  Meanwhile I went yesterday to my local oncologist. She did blood work and just called.  My liver functions are off.  The ALT is 178. In Nov. it was 40.  The Alkaline Phos. was 140 - she said that was high also, did not catch what it was in Nov. 

I am on Zocor 80mg for cholesteral, she said that could be why, but then why wouldn't it have been high in Nov!!!   I've actually been off for 2 weeks because I also have mastitis and have been on 2 different courses of antibiotics. Erithromycin 1600 mg a day, and then the z-pack. Zocor and Erithromycin do not work well together. No one warned me at first so for about 6 days I was on them together.  I'm allergic to most antibiotics so that was why those were chosen - they didn't work and am being referred to an infectious disease Dr.    Could the antibiotics cause the high numbers??

She is having me come back next week to redo the bloodwork. She never calls, always has her nurse call so I know this is not normal.

Can anyone give me some insight?  I had been able to keep my anxiety in check for the next PET but it's off the charts right now!

Linda

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Jaime.30's picture
Replies 2
Last reply 1/30/2011 - 1:03am
Replies by: Jaime.30, lhaley

Hi!  I just wanted to post a little update and say thank you for all of you who offered a kind word during my freak out posts last month.  My husband Eston is doing great.  After a few CT scans on his neck and a follow up MRI on his brain there is no sign of Melanoma still.  It has been a busy stressful almost 2 years but we NEVER take forgranted how lucky and blessed we are that he is NED and that the crainotomy found no melanoma.  He is back to work and we are trying as hard as we can to just live life.  Sadly Eston's father passed away from a heart attack a month ago but we were very touched that his mother decided to list MRF in the obituary to send donations to.  Eston's dad would want a cure for his son and for others fighting this cancer.  We know of at least 3 donations made and this means the world to us!!  Every little bit helps.

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Jan in OC's picture
Replies 13
Last reply 1/29/2011 - 12:35pm

During the scans to qualify for the E-7080 trial, the Dr discovered several brain mets. Husband has been on no treatment since failing BRAF on 12/20/10 in preparation for another trial.  Cancer has been growing like crazy!  We are both a little upset by this news.

We go in this afternoon to discuss other options with him, but I don't know anything about the treatment options once mel is in the brain.  Any help or advice would be appreciated.

Jan, wife to Dirk, stage 4, WLE, 1 mo HD Interferon, BRAF 11months

laughter is the best medicine

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Sharyn's picture
Replies 8
Last reply 1/29/2011 - 12:18pm

 

Hi friends!
Just a quick update. I went to Montreal yesterday and met with my oncologist Dr Mihalcioiu and radiation oncologist Dr Roberge. They went over my Dec 8 brain CT scan in great detail, and here's how things are looking.
 
Back in May I had 4 brain tumors treated with Stereotactic Radiosurgery (SRS). I'm delighted to say that 3 of them are gone, and what's left of the 4th one isn't even worth bothering with. But (there's always gotta be a "but"), I have 2 new tumors. One is on my left occipital lobe (I had one on the right side in May), and that affects vision. Lately I have been having mild loss of peripheral vision on the right side (left controls right side of the brain), so that explains my sight problems. The other tumor is in the internal capsule, and (I think) can affect arm and/or leg movement, although I haven't had any of those symptoms. Dr Roberge thinks these 2 new tumors could possibly have been present when I had my last SRS treatment, but were still too small to be detected. So this doesn't necessarily mean new growth.
 
So here's the game plan: I go myself back to Montreal on Tuesday (Feb 1) to check my radiation mask to see if it still fits. Remember, I had no hair last year, so the new hair may have thrown the measurements out of whack. If it doesn't fit, I have to get one made Tues morning. Then I go for an MRI, after which is a planning session to figure out lines and angles, etc. Back home Tues night.  Back to Montreal again, with Jim this time, the following Monday (Feb 7 & 8) for the actual treatment. It would have been nice to do it all in the one trip, but a lot has to be done from the 1st to the 7th, co-ordinating physicists, figuring out radiation dosages, etc.
 
Then I resume the next phase of ipilimumab, which, by the way, the doctors are absolutely thrilled with! They can't believe the drastic reduction in other parts of my body. They'll do another CT scan before we start up again to see what my new starting points are.  
 
So that's it -- just another little bump in the road. I'll let you know how it goes after the 8th.
 
Hugs
Sharyn

 

WLE, SNB, ILP, LND, PV-10, Uterine mets (Hysterectomy), GM-CSF, WBR, RT, Temodar, B-RAF negative, SRS (Novalis) to brain, Breast mets (Mastectomy), currently on Ipilimumab compassionate use trial Mets to brain, lung and sub-qs. Craniotomy.

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glewis923's picture
Replies 8
Last reply 1/29/2011 - 8:50am

Had MRI this AM.  at 2;00 my dr. called for "family" mtg.  have 2 five mm tumors on back lft.., 1 smaller in Thalamus, another in Ganglion area.  This sux, but i've been bracing myself for progression.  

Question:  All cyber- knife/stereostatic veterans:  did any of you have this many zapped away- in these diverse places,  AND did it "kill" them or did more simply appear?   Will find out tomorrow my options on ciber-knife and WBR (whole brain radiation)....BUT....I've come to the conclusion that many of you can give me better and straighter answers than many of the Drs' can-  so your input is valued.

Thanks and Love ALL-  Grady & Family.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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LynnLuc's picture
Replies 4
Last reply 1/28/2011 - 4:14pm

About Linda S in Florida (stage 4 melanoma). My best buddy! Linda had surgery today at Moffitt.They were planning on removing a 5 inch area which was thought to be infection or melanoma..Surgery over-doing fine considering...she has her happy pump which keeps her sleeping.
 

-growth in intestine was larger than expected...took out 1/2 of large intestines...cancer was everywhere...all of ascending is gone and 1/2 of transverse...that is 3/4 of large intestines. Melanoma was size of grapefruit that they removed...
They couldn't remove it all because it is wrapped around the intestine and major arteries...will do trial after she recovers using her melanoma cells...
They were also hoping to tray and remove  two around her stomach in a fatty layer since they were in there but couldn't...too close to major vessels...

The one in her lungs remains about size of golf ball ( was size of grapefruit) and one remains under her arm...she managed to stage on the YM-155-docetaxel-longer then anyone on the trial...11 cycles. She has Rheumatoid Arthritis ( an auto immune disease) which keeps her from doing any immunotherapy! pray for her please...

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annaoc's picture
Replies 6
Last reply 1/28/2011 - 10:06am

Don't post often, but when I was in the thick of diagnosis, surgery, etc. I went on the bulletin board A LOT to read success stories. Hoping this gives at least one person a little hope! Clear scans; NED and I are still happily together!

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Jenjen's picture
Replies 10
Last reply 1/27/2011 - 10:14pm

Hi everyone,

 

My name is Jen and I am  currently stage 3a  (a couple cells in sentinel node), 2.4 mm, melanoma on foot. I was diagnosed when 26, am now 28 and about 18 months NED, after interferon and LND.  I am now taking classes to try and become a nurse and apply to nursing school in about a year. Some of my oncologists (but not all, they disagree on the subject) have mentioned that getting future vaccinations or immunizations could cause my melanoma to come back.  One of my oncs said he had a stage 2 patient who went 40 years without a recurrence, then had a vaccination to go on safari in europe and it came back stage 4. My oncologists at UCSF , dont agree with this, so i feel like i need some additional opinions or knowledge.

Has anyone heard of this? Or can anyone offer any insight on this subject. To become a nurse you have to get certain vaccinations.( for example: hep b)  I really want to do this but need to know how serious this risk is? And if i have to give up my dream of becoming a nurse.

 

Any advice or knowledge on the subject would be great.

 

Thank you,

 

Jenjen 3a, NED 18 months

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Replies by: Anonymous

Hi there everyone,

Ive just started taking PLX4032 (4 days ago) as part of the BRIM 3 Trial.  When I first went on this trial back in July, I was randomized to recieve treatment with Dacarbazine (DTIC) , which didnt help me at all. I recieved it for about 5 rounds, when we discovered that my disease was progressing.  Then for a few months I went untreated, while I tried to sign up to other trials (focusing on the V600E BRAF Mutation), only to be knocked back for not meeting criteria by the slimmest of margins.  I then went on to the compassionate use of IPI, with no success either.

So, Im finally getting the treatment that I've so desperately been waiting for, and I am positive that it is going to be the one that is going to work for me.  I just know it, and have faith in its ability to put my disease in the rubbish bin, where it belongs!!  I do know a lot about this pill, its tendency to only work for a certain amount of time, etc, but with this disease, I am living for today. and if I can go through months of 'todays' in remission, without having to worry about this horrible disease then I would be so thankful and happy.  Then when and if a bad 'today' happpens in the future, then I must find and have faith in another treatment......  but for now, I live for TODAY! :-)

So, what I would like to know about is other patients experiences on this pill? 

Did you get any initial side effects when you first started taking it? & did they pass? 

How soon did you see a response?  & what to look for, in regards to it working or not?

How well did it work for you? 

What have been the worst side effects of this drug overall? 

If it worked for you, how long did it keep melanoma at bay?

If it worked for you initially but then stopped, what road did you travel down next?

I'd really appreciate it if some of you wonderfully caring, strong, inspirational people out there would share your experiences and knowledge with me.  Because although Ive read a lot of info on the net, its still 'text book' information as far as I'm concerned.  Its based on statistics and the typical experience.  Im NOT a statistic and neither are any of you!  Im an individual and would like to find out other individuals personal stories and real life experiences.

Thanking you all in advance and sending you all much love and light to guide each of  you out there in MPIP Land on this extremely cruel, lousy and bloody rough journey we're all on.....

love Simmy from Oz   xoxo

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Charlie S's picture
Replies 2
Last reply 1/27/2011 - 2:45pm

Hey there Ellen, I was wondering if you have  full access to this clinical article about Immunizations for Cancer Patients that would be a answer to the post  below about this topic.

If so, would you be able to share?

 

http://www.uptodate.com/patients/content/topic.do?topicKey=~pvpQYfr9CgKK9e

Thanks.

Charlie S

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Thinking about you and praying for peace for you.  I know  how you feel as I am going down the same journey.  It's hard.

Take Care,

Sherron, wife to Jim FOREVER

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