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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JerryfromFauq's picture
Replies 19
Last reply 9/15/2012 - 3:53pm

Two things, trying to go to Colorado for a daughters wedding.  @ have gotten delayed leaving because my bloodwork is so bad that they have requested that we not leave driving out until I get a blood transfusion.  Wife has to make wedding dress and other wedding wear after we get there.  I feel fair but always very tired and have been sleeping 10-14 hours most days.  My Oncologist wants me to stop taking the Gleevec for a while and see if the blood levels straighten out.  Hope to contact ya'll later, Good People.

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

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spinach110's picture
Replies 4
Last reply 9/15/2012 - 1:30pm
Replies by: alphabeta, POW, jmmm

Hi everyone, I'm from China and also new to this forum. I'm also very glad to find a place to discuss Melanoma.

My dad was diagnosed Melanoma 12 years ago. Everything begins with a over-developed mole. After a WLS and 2 periods of chemo therapy, he has lived on his normal life for 12 years. 

But the CT scan shows the Melanoma has spreaded over lung and liver this March. With 6 months chemo therapy, the Melanoma still grows a lot.

Now my family placed high hope in the medicine Zelboraf. However, it's not allowed to use or tested in China. 

So I was wondering if anyone is taking Zelboraf and could show us how's the cure effect. Is it practical for my dad to go to US to take the treatment and how much that would be?

Thanks a lot.

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MaryD's picture
Replies 8
Last reply 9/15/2012 - 8:55am

Almost twelve years ago I started my journey with melanoma and since that time have done 1 year of interferon,  a peptide vaccine clincial trial, radiation, ipi after progressing to stage IV via a lung met, and a 6 month course of pulsed IL-2.

Yesterday I had my six month CT scan and have officially gone 4 years since the last recurrence - something I couldn't have imagined happening!   There are so many fighting this disease valiantly and with great courage - I can only wish that this news gives encouragement and hope to all.

Mary

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POW's picture
Replies 3
Last reply 9/15/2012 - 7:33am
Replies by: POW, W., lhaley

I recently wrote a post that I now realize could confuse and frighten people needlessly. Is there any way I can delete my own post? If not, who should I contact to get that post deleted?

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JenJen12's picture
Replies 11
Last reply 9/14/2012 - 11:58pm

Hey all,

 

I'm probably being paranoid but what are some of the symptoms or signs you have had if you had a melanoma recurrence in your intestines, colon etc?

 

Thanks!

 

JenJen

3a with recent pet/ct scan scare (other than that 3 .3 years NED)

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Anonymous's picture
Replies 1
Last reply 9/14/2012 - 6:17pm
Replies by: Anonymous

SPECT/CT Before SLN Excision Improves Melanoma Survival
IMNG Medical Media. 2012 Sept 11, J Smith

Single-photon emission computed tomography/computed tomography imaging before sentinel lymph node excision was associated with significantly higher disease-free survival rates in melanoma patients, according to the results of a new study published in JAMA Sept. 12.In addition to less local relapse and a better 4-year progression-free survival, SPECT/CT was associated with the detection of more positive nodes, more sentinel lymph node-excision (SLNE) procedures performed in the head and neck area,...

http://www.oncologystat.com/news/SPECTCT_Before_SLN_Excision_Improves_Melanoma_Survival_US.html

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Erinmay22's picture
Replies 9
Last reply 9/14/2012 - 2:12pm

In May we found a small spot on small intestine. Started zelboraf end of may. Scans in July showed shrinkage. Scans done Monday show growth again. I wasn't surprised since my stomach had been having issues. So plan is to do surgery to just cut it out (which I wanted originally anyway). And start ipi on Tuesday.

So it's been a rough week. To top it off my poor dog Dublin got hit by a car while we were crossing the street on Monday night. He's ok. Just a messed up back foot. Poor guy.

Not looking forward to intestine surgery... But feel much more comfortable just having the spot cut out! I told my doctor my mom is still hoping its just parasites I picked up in Thailand .

Cheers!
Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Richard_K's picture
Replies 6
Last reply 9/14/2012 - 2:05pm

 

I had my routine scan and blood follow-up today and was told my bilirubin took an unexpected upward movement.  As a result, I have been taken off Zelboraf and will have my blood tested again next week to see if it improves.

If there are any of you who have experienced this phenomenon, did your bilirubin return to normal limits after a “drug holiday”?  I would appreciate any information.

Oh yea, 30 months on Zelboraf my scans were good. 

Dick

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gabsound's picture
Replies 1
Last reply 9/14/2012 - 10:55am
Replies by: Phil S

Well, got the result of first set of scans post 2nd round of IPI (Yervoy). Thankfully, the brain MRI remains clear. PET/CT shows increased # and intensity of bone mets- mets in 2 spots in the spine (mid thoracic and lumbar), rib, pelvis, upper left femur and right humerus. Lungs are clear- yeah!! Liver still shows multiple lesions, some old and some new. The larger lesion I had after first round of IPI is no longer metabolically active. The SUV levels range from around 3 to 10.8.

I had to get a femur x ray today as well as they found "endosteal scalloping putting pt at increased risk for developing a pathologic fracture".
Fortunately, this spot is not currently hurting. Will have to hear back on that from dr. Makes me glad I didn't take up jogging, or start working out w weights yet!

With the last round, as well as the recently completed round, I would have bouts of pretty intense pain. Last time intense pain in spine and hips, that eventually got better. Also bad pain in right upper abdomen corresponding with a liver lesion that grew and eventually almost disappeared. This time bad pain in right humerus as well as left lower chest just under breast region ( feel pain when coughing, taking in a big breath and sneezing). Right humerus showed a lesion, nothing in left chest or upper abdomen. I feel like I get this intense pain when my body is actively attacking the lesions. Unfortunately, as of yet it has not gotten to work on a lot of lesions. Has anyone else felt this?

All in all, I don't feel I can complain too much. The bone pain is no fun, but thank goodness for pain meds. I'm still working although not 5 days a week. Still having fun, enjoying my family and living my life.

Dr Samlowski wants to rescan in 6 weeks, but in the mean time is sending me to Angeles Clinic to look at clinical trials. He had hoped to get Anti PD 1, but nothing happening in the very near future.

I have to say this was about what I expected. I'm still optimistic that my body will continue to fight this, but am also thinking I'll be heading into a new treatment.

I so appreciate all of you on this board. This is a great group that is generous in sharing information and support. Love you guys and girls!

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o2bcheri's picture
Replies 1
Last reply 9/14/2012 - 6:10am

 

 

Hi..

 

this is about my best  friend who has mel... he has  been NED for  2 yrs... he had a mel on his shin.. was removed.. then microscopic mel showed up two years later in the sentinal lymph node in his groin..

had the lymphs removed..has been fine ever since..

told me today that he has 3 small "cysts" on his back.. he said they have been there for years.. and has not been worried about them but decided

to get them removed as he wants nothing growing in or on his skin...

he went to his onc.. who said he had not seen them  before.. but my friend says he knows for sure they have been there for years..

the onc wants to take him in and do a wide excision on them right now.. not even testing them first to know what they are..

this seems a bit extreme to me without even biopsy first???

i have had many cysts that sound just the same... they have been removed in the office.. under local .. and voila gone..

 

any thoughts on this??

 

thanks..Michele 

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Angela C's picture
Replies 3
Last reply 9/13/2012 - 10:34pm
Replies by: gabsound, Phil S, aldakota22

Hi everyone.

Just wanted to put out an update. I did the IL-12 TIL trial at NIH in April. I had three months of stable scans. Last month's scans showed slight growth of my adrenal tumor and now this month's scans showed a new 5mm brain met. UUUGGGHH. I've had one other brain met and that was a little over a year ago. I had SRS and it took care of it. So, now I'm needing to do SRS again for this new met.

I'm not sure what the plan is from there. The doctors at NIH will be discussing my case next Monday and what they think I should do beyond the SRS. Since something new has shown up since the TIL treatment, they are thinking it's probably good to move on to something else. The possible options mentioned at this point have been a reinduction of Yervoy, IL-15 and another TIL trial.

Other than the brain met, my other tumors were pretty much holding steady from last month. Perhaps a tiny bit of growth in the main tumor in my adrenal gland. It's so frustrating that if the brain met wasn't there, I'd just get to keep moving forward with my monthly follow ups. But, now I need to move on to something new. Fun fun. The brain met caught me by surprise. I guess I should know by now that there is no rhyme or reason with Melanoma and it can show up whenever and wherever it wants to.

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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I told my psychologist that, following the fifth surgery, and the not yet faded scar of the first and largest wound on my back, I am feeling defeated at the prospect now of every three-month dermatology check-ins, and the ongoing six month neurology MS check-ins, and the monthly visits to other doctors (osteoporosis, scoliosis, and thyroid monitoring.) I cannot afford to see them all this much ... co pays are exceeding our limited pension income. My husband has just today filed for his social security, as my 30 year pension is not enough to cover all these medical costs. So add worry about bills to all the rest.

I just want to walk away from my extended family; siblings don't seem to understand that melanoma and surgeries on top of MS weakness and depression (and a very tight budget ) doesn't leave me in a 'let's get together at a restaurant' mood.   I'm so tired, and so down, and so hurt, and so confused. I feel damaged by the surgeries, and worn out by the summer.

Does anyone else here have reddish/purple scars that are Z shaped and seven or eight inches long and two to three inches wide in shape? I have two like that, one on my back and one (a bit smaller) on my forearm (that one is very visible.) I didn't think the scars would bother me, but they do ... I feel like I was attacked and marked by a gang. No one sees my back but my husband, but still it bothers me. Why is that?

I have more for them to find - moles or age spots that are changing on my neck, and on my upper chest. One site has begun bleeding each time I wash it, but I see the dermatologist next month, and will wait 'til then.

This post is disorganized, as I am. I just can't keep my thoughts straight. Best I can do.

I am not perfect, but I am enough.

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lilahs's picture
Replies 7
Last reply 9/13/2012 - 6:12pm
Replies by: mlbjab, lilahs, Janner, Brooksy
I was recently diagnosed with in situ melanoma on my lower leg. The lab results state "The lesion appears to be completely excised, approximating the nearest margin to within 3mm." Initially on the phone, the doctor told me that even though the standards of care are to remove 5mm from the margins, that he doesn't necessarily feel that I need the additional biopsy. He said that he usually abides by the standards of care, but doesn't believe it is necessary for an additional biopsy. When I went in for my appoinment to remove the stitches, I asked multiple questions about the additional biopsy. Now he is telling me that he recommends having it done.  I believe he is saying that to cover his bases. I'm wondering if anyone has any opinions/experience with this situation. I'm comfortable not having the additional biopsy since the margins were clear. I've also had a rough recovery. I don't feel like it is a huge concern to get the additional biopsy, but maybe I'm being to relaxed about it???

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kpcollins31's picture
Replies 6
Last reply 9/13/2012 - 6:49am

First off, thanks to all the posters on here for the information and encouragement. I posted on here over a year ago (Feb 2011) when I was first diagnosed at stage 2C from something that looked like a wart on my left forearm... went through the WLE and sentinel lymph node biopsy - all clear. PET scan was clear. Life continued as normal with the exception of the oncology and dermatology followups.

Fast forward to 2 weeks ago - noticed a strange lump between my armpit and my elbow. Was not too concerned but asked my dermatologist about it since I had an appointment anyway. The next day I was talking to the oncologist (new one since I moved to North Carolina a few months ago). He did not think lymph nodes were in that location but he had me scheduled for a biopsy the very next day.

When they were doing the biopsy, they noted that it was a lymph node after they drew cells from it. At that point, my heart sunk a little. Then I made a comment about not expecting good news since it was a lymph node... dead silence in the room for about 30 seconds and at that point I knew. I had the weekend to come to terms with what I expected to hear and then heard today from the oncologist. The lymph node contained melanoma so I am now stage 3C.

Now I am being referred to a Dr. John Stewart at the Wake Forest Baptist Health Cancer Center in Winston-Salem, NC (about an hour from where I am in Mooresville). Not too many choices for stage 3 other than interferon which I have already decided against. Just going to try to keep a positive attitude and take one step at a time... none of us ask for this but we deal with the hand we are given. Seeing the long term stage 3 and 4 survivors on here is encouraging.

Kevin

  

  

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