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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clthomas2131's picture
Replies 0

Question..... has anyone had a vacora biopsy of a neck node? I had a fine needle, and was told they were going to do a core biopsy but they called to say I am getting a vacora biopsy done and I would be knocked out for it.... I can't seem to find much on it at all for neck biopsies.

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G-Samsa's picture
Replies 3
Last reply 3/13/2015 - 12:13pm
Replies by: arthurjedi007, Bubbles, Mat

I am sadly completing a successful 2.5 year run on the Anti-PD1/Ipi combo trial.  Although the visceral disease remains in-check, several mets have suddenly appeared and have taken hold in fatty tissue areas.  It's as if there are two distinct systems --- one in which the immune system is still effective at maintaining a tolerable tumor load, and one where it is beginning to lose its grip.  A reinduction of the combination drugs has been (after three infusions) unsuccessful at getting the immune system interested in these new tumors.   Although the new tumors are not life threatening, the doctors feel that it is important to have them removed.  The inaccessibility of the tumors (entangled with nerves, etc) suggests the need to "shrink and pluck", that is, reduce their size so that they can be surgically removed.   Since I am Braf positive, the outlined plan from the medical teamis to exit the trial and move me to a Braf/MEK inhibitor treatment regimen ( presumably it will shrink the tumors enough to be removed).  

Having been under the umbrella of a very effective treatment, I am clinging to my prior treatment like a cat on a cliff, and have expressed some reluctance to chase something not life-threatening, by forever giving up access to a treatment that has worked so well.  I've read many entries here about the limitations of the genetic treatment (that are typically effective for a limited period).  I've also heard it suggested that the Mel can sometime returns with a vengeance.  The doctors have talked me off the ceiling, indicating that together with the prior long-term immuno-therapy treatments, they expect the Braf/MEK to have a better long term effect, and indicate if it loses its grip, both ipi and anti-pd1 remain options (albeit as separate treatments)

Bringing this to the attention of the group for a couple of reasons--

I'd like feedback on whether this sounds like a reasonable approach (I believe we all have developed expertise fighting the disease -- and collective thought might be informative/supportive), also looking for experience/evidence that genetic treatment on top of immuno-therapy makes for a more durable response. I was thinking that I should suggest a set short-term use of the Braf/MEK, just to address the tumors,  hoping this would keep my powder dry, preserving the ability to use Braf/MEK at a later date if the critical tumors begin to stir.  

Thanks for your thoughts

 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 3/13/2015 - 12:02pm

I've had four doses of PD1 and just had my first set of scans, there was some growth in a met in my spine and a new 9mm lung met and a new 1.3cm adrenal gland met. I have mets through body in the bones and in the lungs other than what I have stated everything else was stable ( no growth). Any ideas on what I should do from here, any advice would be helpful.

Thank You

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jag's picture
Replies 16
Last reply 3/17/2015 - 9:48pm
Replies by: jag, JoshF, Manfred, Anonymous, Kim K, yazziemac, kpcollins31, Brendan, Bubbles

After my 4th craniotomy, my neurosurgeon came in to tell my family that he had removed what would be the last melanoma metastases in my brain.  Up to that point, I had had 2 lung surgeries, 1 Video assisted Thorascopy followed by 6 rounds of biochemotherapy, followed by 4 rounds of interleukin 2, followed by a complete left pneumonectomy.  I went on to have SRS radiation (still got the tattoo on my forehead for the laser alignment) followed by a craniotomy when that didn't work, and 4 subsequent cranitomies (2 were double craniotomies) that is when they cut 2 holes in your head.  In between there was focal patch radiation where they create a cast for your face and give you blasts of radiation, I never lost my hair during chemotherapy, the radiation did it, I got married as a fat bald guy to the woman of my dreams (my backbone through all of this and to this day).  

Anyway, enough about that nightmare, there were good times too, trips to most of the national parks, the islands in New England, my cousin's wedding in Ireland, and even working at nearly every borough except Staten Island in NYC as a relief veterinarian.  It has been quite a journey.

Two more brain surgeries later (to clean up radiation crud), a year of not being able to drive due to seizures and Dilantin toxicity, I am now back on my feet and maknig up for lost time.  I am finally tapering off of my seizure medication.  

I was there for the birth of my son Jedd via invitro fertilization.  He is named after my oncologist (and personal hero-who I am sure to this day is as dedicated to his research and cancer patients as he always has been as he has been since he started-Dr. Jedd Wolchok.  Scroll down to the bottom of this article (that was almost 2 years ago on his 

 http://www.fredhutch.org/en/news/quest/2013-12/revolutionizing-solid-tum...

My wife  and I started our own mobile veterinary practice (she is a vet too.)  check it out.  I personally designed the sprinter procedure vehicle which has digital radiography, anesthesia for elective dental and surgical procedures.  Check it out:

www.gsvmobile.com

Anyway, now we are in the process of tearing down our old shack (Meredith and I bought it because she would be able to carry the mortgage on a 600sqft house-if I karked it (as NicOz used to say)) and are installing a n new modular home 3 times it's original size (1800 sqft)  Jedd made me do it as did adopting an early reitrement seeing eye dog last year on my birthday who put us over the edge.  We are renting a house across the street and hope to watch the demolotion and construction of it.  

Meredith was diagnosed with a primary melanoma (barely stage I) and I realized how difficult in can be to think of a loved one being sick.  She was a champion thoughout my whole treatment and was strong for her's too.

Needless to say, having cancer definitely got me used to big changes, being busy, and dealing with stress.  On my worst days I can say "At least I don't have my own brain surgery scheduled for today".  

In the meantime, I'm sorry that I haven't been here to help encourage people and direct them for the best treatments as much as I used to.  The only thing I can say in my defense is that my treatments (other than brain surgery) are virtually non-existent any more and I have been just a little busy .  My treatment strategy was in this order. Say your prayers,  Minimize tumor burden, get throughthe most difficult treatments early on-save the easy ones for when you are really debilitated stay.  Immunotherapy and surgery were the best ones for me.  Stay active and keep moving (I try to get in 10000 steps on my pedometer/day) -say your prayers again, hold hands with your best friend, and look both ways when crossing the street.  

I'd also like to thank the current melanoma "experts" i.e. patients who are experiencing their own treatments and passing on everyday advice to others.  Another resource I always found useful was google alerts.  I had one set for metastatic melanoma and one for brain tumor treatments.  You can set one up for yourself here-you will find out about the "cutting edge" stuff before your doctor does!

https://www.google.com/alerts

Another one when I was scanning for trials is

www.clinical trials.gov.

I am writing this to offer a bit of encouragement for all of you fully engaged in your own personal cancer battle-know that my prayers are with you and to say that you are welcome to e-mail me if I can offer any support:  I'd also like to say thank you to all of the caregivers as you are the glue that holds a patient together.  Some of them (my wife especially)are like crazy glue, which is fine-it is stronger even if smelling it makes you a bit dizzy.

I never though life would be going this well for me.  I never thought it would be as bad as it was when I was going through treatment either.  Either way, I still think of god everyday.  I don't know why I have been lucky enough to be writing this right now.  Hope isn't a bad thing.

e-mail: gallagherjohna@yahoo.com

 

Insert Generic Inspirational Motto Here

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/13/2015 - 5:23pm
Replies by: Fen, Anonymous, Bubbles

I am posting anonymously because my user name does not pass the MPIP spam filter.  My user name is a nickname for Richard followed by “_K” and oddly, there are times I can’t post anonymously even though I changed my user name.

Anyway, I recently passed my five year anniversary on Zelboraf.  Side effects limited to body rash, some foot discomfort, and photosensitivity.

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Bubbles's picture
Replies 3
Last reply 3/13/2015 - 9:18am
Replies by: kpcollins31, _Paul_, Mat

I know his op ed in the NYT touched many of you.  I felt lucky to find another piece he wrote before he passed.  Perhaps you'd like to see it too?

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/03/doctor-writer-father-cancer-patient.html

Live well. Celeste

chaoticallypreciselifeloveandmelanoma.blogspot.com

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Anonymous's picture
Replies 4
Last reply 3/15/2015 - 9:39pm
Replies by: Anonymous, jenny22

As a past user of this group (10 years stage 4 melanoma with Ipilimumab), I now need a good discussion group for prostate cancer in order to find the best urologist.

(I found my melanoma oncologist through this forum but cannot find such an active prostate cancer forum. There are few unfrequent users in the prostate cancer forum that I found. Can anyone recommend please)

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Anonymous's picture
Anonymous
Replies 3
Last reply 3/12/2015 - 6:25pm

Hi Everyone,

 

First and formost thank you all for the valuable information you share .

I am allergic to contrast. My doctor orders CT scans for me "without " contrast. I am worried that the radiologist does not get a "clear" picture if I have any tumors or swollen nodes.

Should I be worried or can radiologists still determine if there are tumors/swollen nodes "without" contrast on my scans. I appreciate any opinion you can give me.

Thanks

 

 

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suzanemine's picture
Replies 1
Last reply 3/12/2015 - 11:39am
Replies by: Anonymous

Some apoptotic bodies (Figure 1A). Apoptotic bodies are approximately in the size range of platelets (1-4 am), whereas micro particles are much smaller (< 1 am). Annexin V/FITC staining showed that both apoptotic bodies and micro particles are positive for annexing V (Figure 1B). In contrast, staining with PI showed that apoptotic bodies, but not micro particles, are positive for PI (Figure 1B). Furthermore, apoptotic bodies stained positive for DAPI, PI, and lection, as demonstrated by RevTest fluorescence microscopy (Figure 1C). These findings demonstrate that EC-derived apoptotic bodies exist as small membrane vesicles, which contain DNA. Circulating EPCs play a role in the repair of injured vessels and ischemic or damaged tissue.10 because endothelial injury is often associated with apoptosis, we have investigated whether apoptotic bodies from mature ECs could affect the behavior of adult EPCs in vitro. We demonstrated here a stimulatory effect of HUVEC-derived apoptotic bodies on the number and.

For more information, visit this site >>>>>>>  http://healthoffertrial.com/revtest-review-free-trial/

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aus123's picture
Replies 7
Last reply 3/12/2015 - 9:26pm

Hi All,

Firstly, thankyou for taking the time to read my post and for sharing your personal stories on this forum.. it is immensly helpful for me in this time of need. 

I am after advice for my father who is stage IV melanoma. A little background:

2005 - Melanoma discovered in heel of foot, large part of the heel is removed and lymph nodes in legs and groin are removed as a precautionary measure. 

March 2014 - Woke up unable to move left side of body properly. Taken to emergency to find brain tumour and multiple mets in stomach and in lungs.
Brain tumour is successfully operated on and removed. Round of radition is undertaken to make sure it is all gone (has since not returned). 

May 2014 - Yervoy/Ipilimumab round started.

Nov 2014 - Yervoy/IPI is not deemed not successful and more mets develop in stomach.

Dec 2014 - Taken to hospital with extremely low blood count. Large tumour in stomach is bleeding and stays in hospital for 16 days to undertake radiation as surgery is not as option with blood levels topped up daily. Tumours now found in intestines.

Jan 2015 - Stomach tumour is still bleeding but has slowed down and blood levels stay high for longer periods of time. Extreme pain in shoulder reveals a large tumour inside the bone and radiation round is started to help reduce pain.

Early Feb 2015 - We are extremely lucky to be given access to PD-1 Nivolumab which is not listed on the PBS (Australia's version of the FDA) based on compassionate reasons as oncologist said we dont have many other options. 

At this stage he is not eating a lot at all and has woken up multiple times with severe pain attacks in the stomach and back. We are told that testing for PD-1 success will not take place until the end of the treatment (which i believe is still an excrutiating 10 weeks away) but tumours are now visable through his skin in his back and also on his stomach that the oncologist said is in his liver. My dad said he is feeling better overall but with tumours still obviously growing (fast!) my question - is there still hope that he can have a reaction to PD-1? He has recieved at least 4 doses of the drug on a weekly basis and I would like to know what everyones experience has been with reaction time and if there are any tell-tale signs that it is working?
During this process I have fallen pregnant with my first child and my fathers first grandchild. It is definately challanging to go through one of the saddest and happiest times of your life at the same time but all in all we are very positive and thankful for this special time we have. 

Thanks.

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rjwilson2015's picture
Replies 3
Last reply 3/12/2015 - 12:46am
Replies by: MattF, rjwilson2015, Janner

Just got the second report back no melacytric  proliferations found deeper tissues examined. What would this mean ?

 

then is goes on to say intercorneal hemmohrage in thumb nail ?

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arthurjedi007's picture
Replies 17
Last reply 3/13/2015 - 1:27pm

Wasn't going to post this but since the previous two folks had good news I figured to make it three.

Got the results of my head scan. This time it was a ct instead of an mri so the angles were different when they tried to compare. But the doc said it looked smaller and there is no new stuff. So rescan this time in 6 months instead of 3. Sounds like a wonderful miracle and relief to me. They are going to do my 8th pet scan in 6 more weeks so about 5 months from my last one instead of 3ish months.

Way better than last year this time my med onc said if the tumor in my t10 grew a hairs breath in a certain direction I would be paralyzed. My surgeon was saying anyone else receiving that much spinal cord damage at once would already be paralyzed. One twist lift turn too many and I would be paralyzed and later they said they couldn't do the surgery. So yeah way better than this time last year. I'm not sure why I've been so blessed but I think I'm a walking talking miracle. Lots of tumors to get rid of but at least I'm still here in the fight.

Artie

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Marianne quinn's picture
Replies 5
Last reply 3/12/2015 - 5:00pm

My husband was diagnosed at Stage 3C in September 2013. He had melanoma under his thumbnail which he dd not investigate for at least 1 year. After a partial amputation and lymphendectomy, he was NED  and entered the clinical trial of yervoy vs interferon trial.. He was in the 10 mg arm ( there was also a 3 mg arm). We were very nervous about the high dose and the side effects. With diet modification and occassional use of OTC medication, he weathered GI effects without needing steroids. To our dismay in March, his CAT scan after the induction phase of 4 infusions showed a small metastasis in his liver. He was removed from the trial. We were absolutely devastated thinking the ipi did not work. In May2014, he had microwave ablation of the single metastasis. We were pleased to find out that at the time of surgery, the metastasis was slightly smaller than the CAT scan indicated 6 weeks before.He became NED.

Monday his CAT scan was clear. Thinking how it was last March, I am so grateful and appreciative of this forum that kep me informed and positive. We are sure that the Yervoy worked and he just had what is termed as a "unconventional" response.  

I know that people are scared of Yervoy, but it can work. It seems unfair that you have to "fail" Yervoy before you get the anti-PD1s. However, Yervoy might work for you. Even if you "fail" it, maybe getting the anti- PD1 afterwards might be more effective after having the Yervoy. Just speculating, but the medications work in different ways so who really knows? 

Just for interest, he had his last dose of ipi in March 2014. He still has a sensitive GI tract, but only to whole wheat and milk. He can drink lactaid.  He makes a smoothie of bananas, applesauce, and Greek yogurt with active cultures daily. He believes that repopulating his GI tract with beneficial bacteria helped keep the diarrhea under control. We think he has a permanent change to his immune system which is the goal of therapy. Hope we are right.

Best of luck to you all. 

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Brendan's picture
Replies 12
Last reply 3/16/2015 - 3:22pm

Hi everyone,

i just wanted to share some good news in the hopes that it will lift someone's spirits; as many have done for me in the past.

i just had all my scans yesterday and they looked good. Here's a quick summary:

Sept 2011-stage IV, lung met, thoracic surgery

Nov 2012-craniotomy #1

June 2013-craniotomy #2 (recurrence), gliadel wafers left in cavity

November 2013-two new mets, one in each lung

Jan 2014-begin nivolumab trial

Feb 2014-first scans on clinical trial are good, small met is gone, target met down 60%

March 2015-brain still clear, lung met stable after 95% shrinkage.

So I've been stage IV for 3 1/2 years and still going. Some SRS and ipi was mixed in there too, along with some seizures.  

I'm just happy to still be able to play with my girls and bother my wife!

Good luck to you all.

Brendan

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JerryfromFauq's picture
Replies 2
Last reply 3/11/2015 - 9:29pm
Replies by: BrianP, Maureen038

 Adopting Bodily Defenses to Cure Cancer

http://home.ccr.cancer.gov/connections/2014/Vol8_No1/intheclinic.asp

Steven Rosenberg, M.D., Ph.D., Chief of CCR’s Surgery Branch since 1974, is a genuine pioneer in the development of immunotherapies for cancer. In 1985, he was the first to demonstrate that an immunotherapy—specifically, the administration of interleukin-2 (IL-2)—could cure certain patients with metastatic disease. A few years later, he opened the doors to cell-based immunotherapies by showing that tumor-infiltrating T lymphocytes (TILs) could be isolated from melanomas, stimulated to proliferate, and reintroduced into patients to promote cancer regression. Since that time, Rosenberg and his colleagues have discovered and developed innovative ways to improve upon cell transfer therapies. He was the first to insert foreign genes into humans in 1990 and the first to demonstrate that genetic modification of T cells could mediate cancer regression in patients with melanoma, sarcomas, and lymphomas. Rosenberg has written more than 1,100 scientific articles, as well as eight books, and was the most cited clinician in the world in the field of oncology between 1981 and 1998.

^^^^^^^^^^^^^^^^^^^^^^^^^

Destroying the Competition

In 2002, we demonstrated that we could increase the therapeutic efficacy of ACT dramatically, by first extracting TILs, then depleting the patient’s remaining lymphocytes with a combination of drugs (cyclophosphamide and fludarabine) before reinfusing the expanded population of TILs into the patient. We recently reported that among the first 93 patients with metastatic melanoma who were treated in this way, 20 had complete regressions. Of those 20, 19 maintained their tumor-free status for more than six years and some have been followed for more than 10 years. We reported these data from three successive pilot trials; in the last trial, 40 percent of patients experienced complete cancer regression.

 

 

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

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