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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Thanny's picture
Replies 15
Last reply 9/17/2012 - 8:15am

Hello All. My wife is stage 3C and after a year of NED, she has had 4 tumors pop up between her primary and her lymphnodes (had 2 lymphnodes removed last june, both positive for melanoma) in the span of 45 days which means that the melanoma is in transit. Outside of her surgeries (to remove the primary and the lymphnodes) she has never recieved any treatment, which makes her eligible for the GSK MEK and BRAF trial. 

This comes as a big blow to us, as we were hoping to start a family soon. If we enter the trial we will have to give up on starting a family for at least 3 years (god willing), so with those things in mind, we were hoping some of you can speak on our situation.

Once melanoma starts coming back in her limb, what is our prognosis?

Do we have time to try for children before entering treatment? if not....how about after?

If we do have time before starting treatment, we were thinking of having an isolated limb perfusion before we start trying, with hopes that this would buy us some more time before she can start treatment. Is this a good option?

Please don't think we are being selfish or greedy. I know some of you out there would kill to be in our shoes, and we do recognize that even with this bad news, we are still fortunate to have these options. However, like it or not, these are our options and we would be foolish not to seriously consider each one.

 

Thank you in advance,

Nate and Thanny

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/16/2012 - 5:49am

Is there anyone out there who is actively in this trial?  My SIL is considering it.  I have tried to understand which is which, but unless I am misreading, neither of these are the same as vemurafenib, which was what we understood to be the treatment of choice now that she is B RAF positive.  If there is a thread that already addresses this, I apoligize.

a

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frankMill's picture
Replies 7
Last reply 9/16/2012 - 10:53pm

I got my HLA test results today and I am negative.  Not eligible for the anti-PD1 trial at Moffitt.  I was really depressed for several hours until someone I love pointed out that because I am now NED after the surgery, perhaps God felt that there was someone else in greater need of one of the five open trial slots. I'm sure that Moffitt will come up with another adjuvant treatment for me. 

This stage IV melanoma stuff really has it's ups and downs, a real roller coaster ride!  Does it ever get any easier or more certain or do I need to live every moment in fear?

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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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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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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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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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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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Dgentz's picture
Replies 2
Last reply 9/15/2012 - 4:41pm
Replies by: Kellie-T, awillett1991

I have been on Zelboraf since July and am at full dose (8 pills/day). My side effects have varied: hair loss, fatigue, taste changes, headaches, sun sensitivity, joint pain, flu (fevers, chills, etc), intestinal issues, etc. Most come and go; some days better than others.

The one that seems to be getting worse is the "chicken skin", especially on my face. I'm so bumpy and it's getting me down. Anyone find anything to help this side effect?

I have a scan Oct 1 to see how well it's working, so fingers crossed all of these side effects are worthwhile ! ;)

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Gene_S's picture
Replies 21
Last reply 9/18/2012 - 1:37pm
Replies by: jordangurnzz, Anonymous, frankMill, natasha, mlbjab
After watching this video preview,
 
Healing Cancer From The Inside Out - Preview
 
 

I located a copy of the DVD and here are some of the numbers mentioned for melanoma patients.

It should be noted that these numbers are from 1995 when there was no successful treatments. 

 ------------------------------------------------------------------
 
Stage II Malignant Melanoma
 
39% alive after 5 years (typical diet and conventional treatments)
 
82% alive after 5 years (plant based diet with no conventional treatments)
 
-----------------------------------------------------------------------------
Stage IV Malignant Melanoma
 
6% alive after 4 years (Conventional treatment and typical diet)
 
39% alive after 4 years (adopted a 100% plant based diet)
 
-------------------------------------------------------------------------------
Stage I & II Malignant Melanoma
 
That adapted a 100% plant based diet had a 100% survival rate after 5 years
 
--------------------------------------------------------------------------------
Stage III Malignant Melanoma
 
That adapted a plant based diet had a 71% survival rate after 5 years.

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

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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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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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Community Health Resources Center is presenting the final lecture in a 3-part series on melanoma, details are as follows:

Date, time: Wednesday September 26th, 5 - 6:30 pm

Presented by: David Minor, MD . This lecture will address the advanced stages of melanoma and treatments that are available during stages III and IV. The most current research will be reviewed. Refreshments provided.

Location: 2333 Buchanan St., Level A Conference Room, San Francisco, Ca 94115

Cost: Free! Any donation contribution welcome, $10 suggested

Registration required: Call 415-923-3155, or email cpmcchrc@sutterhealth.org

We look forward to seeing you there!

Community Health Resource Center... the next step to better health

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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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