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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mattg's picture
Replies 7
Last reply 1/26/2017 - 2:17pm
Replies by: mattg, oocn, Anonymous, jennunicorn

Some history:

I joined the melanoma club on October 25th, 2016 following the biopsy of a birthmark mole near my left sideburn.  Following a haircut, I knew something wasn't right.  The depth was reported to be at least 1.5mm putting me at 1B.  Went for surgery #1 on Nov 30th for the wide local excision and SLNB.  One lymph node came back positive (micrometastisis I believe is the term) putting me at 3A.  After discussions with an onologist and my surgeon a Modified Radical Neck Dissection was performed on Jan 6th.  We have coverage through Kaiser Permanente so all doctors, etc work for Kaiser.

During the neck dissection, the sternocleidomastoid muscle was removed and a major nerve (forget the name) cut and repaired.  I had a previous neck surgery as an infant which produced scare tissue complicating the dissection.  I have the planned incision from behind the ear almost to my adams apple, but then also have an incision forming a T shape towards my shoulder.  Thankfully, all 48 lymph nodes removed were clean.  Pain immedately following surgery was very minimal as I couldn't feel much at all due to the nerve damage.

Several days following surgery, the pain intensified especially near the base of where the sternocleidomastoid muscle was removed (near the collarbone).  I am now approximately 19 days post surgery and the pain is still intense, with little improvement.  Surgeon has refilled my oxycodone and told me that pain from thie surgery may last 1 to 2 months.  Some days I've needed to pair the oxycodone with tylenol to boost the effectiveness.  Initially I was told I would be pretty beat up for about a month, but honestly, I wasn't expecting that since I bounced back so fast from the first surgery.

Long post, but I was hoping to get some experiences from others who had this procedure and had the muscle removed - which is where I am assuming the pain is coming from.  How long did you expereince the upper chest pain?

Thank you

 

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Successful Immunotherapy Requires System-Wide Immune Response

‘Memory’ Immune Cells May be Key to Long-Term Prevention of Cancer Recurrence

New research led by researchers from UC San Francisco and Stanford University has found that successful cancer immunotherapy appears to depend on whether the treatment can trigger a system-wide immune response, rather than just a local response within the tumor itself. Specifically, data from both mouse models and human patients indicated that successful immunotherapy activates a population of peripheral “memory” immune cells that the researchers speculate are key to immunotherapy’s ability to mount a long-term defense against cancer throughout the body.

The findings — published Jan. 19 in Cell — suggest a new explanation for why immunotherapy, for all its promise, has so far only been effective in a minority of cancer patients, the authors say, and offers leads about how to tweak the approach to bring its benefits to many more people.

“Profiling the immune response across the organism allowed us to see that successful immunotherapy involves widespread activation of the immune system in places far from the tumor itself: in the lymph nodes, the bone marrow, in the blood,” said lead author Matthew Spitzer, PhD, a UCSF Parker fellow and Sandler Faculty Fellow, and a member of UCSF’s Parker Institute for Cancer Immunotherapy. “This suggests that priming the immune system for a more systemic response could significantly broaden the effectiveness of immunotherapy.”

Spitzer conducted much of the research for the new study as a graduate student in the labs of Edgar G. Engleman, MD, and Garry P. Nolan, PhD, of Stanford University, and recently joined UCSF as a faculty fellow to continue his work studying how the immune system coordinates its systemic response against cancer and other threats.

Technique Reveals Whole-Body Response

Immunotherapy has been lauded as a transformative new treatment for cancer: in some patients recruiting the immune system to battle cancer makes tumors melt away and stay away. But so far, most patients simply don’t respond. Some forms of immunotherapy, such as anti-PD1 “checkpoint blockade” therapy, are frequently effective against melanoma, but fail to trigger a successful immune response against most carcinomas, which are the most common forms of cancer.

Most previous studies of immunotherapy response have focused on how treatments recruit immune activity within tumors themselves, but in their new research, Spitzer et al took a larger view of the problem, developing a computational platform — which they call “Scaffold” — that let them intuitively visualize the immune response in detail across a whole organism during successful and unsuccessful immunotherapy treatments.

“Previously we really had no ability to analyze, in detail, the state of immune cells throughout the body,” said Engleman. “This allowed us to get a detailed snapshot of what the immune system likes like in many different tissues at one time, or at several different time points.”

Specifically, the researchers used a genetically engineered mouse model of triple-negative breast cancer to study how the immune response to anti-PD1 therapy (which is ineffective in these mice) differed from the immune response to an experimental therapy that the researchers had recently shown to be highly effective against the form of cancer these mice develop. The new therapy combines tumor-binding antibodies — which provide a bridge between tumor and the immune system — with chemicals that activate a type of messenger immune cell called dendritic cells which are important for educating the rest of the immune system about specific threats.

In the new study, the team analyzed immune cells from different tissues across the body using a sensitive technique called mass cytometry to identify which types of immune cells were present and learn about their functional state. Using Spitzer’s Scaffold software, they were able to see that while the ineffective anti-PD1 therapy triggered a short-lived immune response in the tumor itself, the effective experimental treatment triggered a coordinated immune response across many different tissues, even as the immune response within the tumor itself began to die down.

“This suggests that studies which have looked for activated immune cells within the tumor as a sign that immunotherapy is working may have been looking in the wrong place,” Spitzer said. “You need to see an immune response outside of the tumor to have an effective treatment.”

In addition, the team found that successful immunotherapy activated a population of immune cells called CD4+ T cells, which appear to be key to “remembering” the tumor and coordinating a long-lasting immunity to cancer throughout the body. When the researchers extracted CD4+ T cells from successfully treated mice and transplanted them into other mice, these memory cells alone proved to be sufficient to trigger an immune response against the other animals’ tumors.

“Most people have focused on CD8+ T-cells, which are like the immune system’s police force that go around taking out dangerous cells,” Spitzer said. “The fact that we saw such an important role for CD4+ cells instead was a bit surprising. But these cells are very important for coordinating immune responses in other settings, so it is logical.”

To learn whether the same type of systemic response occurred in human patients who responded well to immunotherapy, the authors used their technique to examine of the blood of patients who had been given anti-PD1 drugs to treat melanoma. The researchers found signatures of the same type of CD4+ T cell activation in the blood these patients, suggesting that a similar systemic immune response may be key to the success of immunotherapy in humans as well – even with a different type of cancer and different immunotherapy approach altogether.

Priming Immune System Helps Immunotherapy

Finally, the authors examined how some tumors might be evading treatment in cases where immunotherapy fails. In their animal models, they showed that following the injection of immunotherapy agents into a primary tumor, other tumors in the animal start producing a molecule called PD-L1, part of the “checkpoint” system that acts to suppress the ability of the immune system to attack these tumors. The authors found that adding an anti-PD-L1 drug to their experimental immunotherapy enabled the immune system to successfully eradicate these additional tumors.

The new study shows that measuring the body's immune response as a whole may be key to understanding how to effectively recruit it in the fight against cancer.

“We find that the more you look into the areas you think you understand, the more you realize you are missing the big picture,” said Nolan. “By looking at everything and using social network math, we can discover how cells work together to defeat cancer. Interestingly, it is also providing clues on which cell types cancer interferes with to defeat the immune system.”

Spitzer says he hopes the techniques he and his colleagues have developed will open the door to a wide variety of experiments to understand the complex workings of the immune system: “We simply haven’t had a good way to assess immune health across the whole organism until now. We’ve been looking through a pinhole — now we have an opportunity to see the entire landscape.”

 

 

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45_dps's picture
Replies 4
Last reply 1/26/2017 - 1:52pm
Replies by: Anonymous, Linny, Marksa2570

Hi,

Today I received my treatment plan and we are happy with it. I would like to hear comments and input...please.

Stage 3 melanoma (found in the lymph nodes of my neck) without a known source (skin-based source was either beaten by my immune system or I picked it off because I'm slightly obsessive compulsive disorder (OCD)).

Therapy: Complete lymph node dissection in the area. Then IPI / Yervoy (10mg) for 2 years (starting every 3 weeks then down shifting to every 3 months).

Holding back on Keytruda in the unlikely future event of a recurrence then I would be given it.

DanSanDiego

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vickiaa0529's picture
Replies 2
Last reply 1/25/2017 - 10:43am

Just had another fainting spell. I was waiting to hear back from MD Anderson about starting an aspirin regime, which is what was recommended. I was diagnosed as AFIB. Is that a side effect of ipi? 
What is the difference between fainting and a seizure
I just had my brain MRI and it was clear as of 1/11

In the ER now

Thanks

Vicki

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_Paul_'s picture
Replies 6
Last reply 1/25/2017 - 1:55pm

Things were simply going too well, so like a dumb-ass I had to toss a fly into the ointment. Ever since receiving the TIL my breathing has been somewhat labored and crossing streets and whatnot would feel like I was maxed out.

I was supposed to be driving back to Seattle from LA yesterday,  but I thought I should take care of the breathing first. So I went to the ER at Cedars-Sinai for what I was hoping would just be a jug of oxygen. They did an X-ray, then a CT  (during which time someone in the ER helped themselves to $800 from my wallet).

Results showed fluid surrounding lungs and heart.  So yesterday, in a procedure that is certainly up there with medicine's rather unpleasant, 300ml was drained from my right lungs via a needle, while awake. They are now testing me to see if the sac surrounding my heart should also be drained.

Once I get past this little setback then I can get consented and started with the trial. I will be very happy when that gets going.

In the meantime,  things are progressing with the visa for my fiance, Pilar, although glaciers move faster than the US beauracracy.

- Paul

To exist is beyond fantastic.

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jdm22's picture
Replies 6
Last reply 1/30/2017 - 10:46am
Replies by: jdm22, Sweetv83, Janner

I am new here, and to say nervous/scared is def an understatement. I received a phone call while out of town on business that my report came back from a spot on my wrist I had checked last week. I have had this same place examined 2 years ago, but was told no reason to do anything to it even despite my concern. Now they have done a biopsy this time and was told on the phone it was melanoma and need to schedule surgery to reomve immediately. I have surgery tomorrow to remove...lesion is 1cm across, but guessing I won't know detials/depth/staging until after the surgery tomorrow and testing after that? I made the mistake of googling after the phone call and wow was that a mistake. I have three young daughters and a wife who is terrified. Needless to say I understand their feelings. Trying to maintain a level of "oh I am sure it will be fine" but that is difficult when you are coaching, playing, and spending time with your little girls. Hoping for a best case report, but the time I have had the spot makes me terrified of what they will say. Thanks ahead of time to all of you out there that have walked in my shoes before, and prayers for those who are currently walking this same journey as I. 

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Buddy0513's picture
Replies 2
Last reply 1/24/2017 - 6:56pm
Replies by: Buddy0513, Polymath

Hello everyone,

My mom finally got her scan results (for the most part) after a long weekend. Since the nurse called us at home I don't have all of the details other than they said swelling has gone down. There is no swelling in her lymph nodes (I guess nothing in the lymph nodes?) and that no new activity was reported anywhere. I am assuming they mean swelling in the abdomen area related to the tumor and that the tumor has shrunk, but is still there, making her stable at the moment (I really didn't expect the almost cantelope size tumor to just vanish). 

So this was really good news! I am not entirely sure what that means for stability wise a few months from now since the nurse did not mention NED (or if she can even attain NED later?), but she is scheduled to continue Nivo once her prednisone mg is reduced (she had colitis recently ontop of the rash, but the steroid seems to be helping that).

Just wanted to thank everyone for the support along the way here. This board really has made a huge difference between life and death for my mom, especially choosing the right doctor and what we should be looking out for. Keeping all of you in my thoughts as you continue to kick melanoma butt!

Melissa

 

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Patina's picture
Replies 3
Last reply 1/24/2017 - 1:06pm
Replies by: Anonymous, cancersnewnormal

A recent article in Cell Metabolism showed that BRAF V600E mutation will grow faster in response to a high fat diet.

I've heard something similar to this reported before and my Mom's doctor had recommended reducing glutamine, if possible. - My Mom didn't try it.

Another article: Right on Target: Glutamine Metabolism in Cancer

 

 

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snow white's picture
Replies 10
Last reply 1/25/2017 - 10:57pm

Dad saw the infectious disease doc today.  Doc does not feel he has fungus, but they will test the spinal fluid for it along with the LMD.  He goes tomorrow for the spinal tap.  In the meantime, Dr. Freeman (Hamid) wants to start Dad on Ipi (Yervoy) possibly next week.  My mom was a bit freaked out when she read the side effects, death being in the first paragraph.  But, i told her that all drugs have side effects, don't read the side effects, deal with them as they come.  So my mighty Warriors, what do you think of this plan?  Is this the expected next step after 5 treatments of Opdivo?  What do I need to know? anything to look out for? Dad tolerated Opdivo with hardly any side effects.

Any and all thoughts would be greatly appreciated.  Of course I am feeling a bit nervous about anything new, but I also know that we must move ahead with treatment in order to kill the Beast.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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sarah.brannon's picture
Replies 1
Last reply 1/23/2017 - 11:51pm
Replies by: Christinad

I finished a year of Interferon 09/30/16. Since then, no periods. My cycle was normal while on the medicine, but nothing since. I thought maybe I was in early menopause, especially since I was having (severe) night sweats and hot flashes. My gynecologist (specialty is cancer in reproductive organs) prescribed a birth control pill with a higher estrogen amount to help with symptoms, which it did.

Got the bloodwork back today, results via phone call, I am not experiencing hormonal menopause, but that it could still be an ovarian problem...

Has anyone else experienced this?

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Is anyone in need of these amazing drugs? They are incredibly expensive and very effective. I have two bottles with only one dose taken from each, I'm pretty sure. I have kept refrigerated. I refuse to throw them out.

Please, if someone needs, let me know.

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Aloha14's picture
Replies 5
Last reply 1/25/2017 - 7:32pm

Today I had the seromas drained again (2ne time) and this time the surgeon was more aggressive about it~meaning she went in from different angles and also drained a 4th one that I thought was either muscle spasms or scar tissue. That was 5 hours ago and even with a compression bandage and compression shorts, it's almost filled up again.

I don't understand why my body can't drain this stuff?

Next the surgeon wants me to get a repeat ultrasound so she can look at the seromas again since the draining. I may have to have radiology drain these while under ultrasound rather than having the surgeon just use a still picture. 

 

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jahendry12's picture
Replies 5
Last reply 1/25/2017 - 1:20pm

First I want to thank you all for the tremendous sharing of information there is on this site.  I come here quite often to do research and obtain info.

A few question for those of you that have been on this combo:

1)  How long did it take for the side effects to beging?

2) Has anyone ever had minimal side effects?

My husband just started this combo over the weekend and I'm watching him like a hawk.

Any info would be greatly appreciated.

Thank you!

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Just checking in to see how things are going?  Thinking of you both everday, hoping a plan of action has been put in place.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Chelle19's picture
Replies 5
Last reply 1/23/2017 - 8:08pm

I had a mole on my upper left arm that I had been suspicious of for a few years now. I have had moles removed before for cosmetic reasons and dont know why I never requested this one to be removed. For years people have been pointing it out and saying I should get it checked. Multiple doctors looked at it and would say its fine even though I would say I think it's getting bigger. I  wish I had just followed my gut instincts and had it removed but too late now. I had been meaning to get it checked for months and finally did early January when I was at an appt for my severe anxiety and depression. Again I swore that it was getting bigger. This time my doctor said we would biopsy it and referred me to another doctor in the clinic.

Long story short he referred me to a dermatologist but it was a 3 and a half week wait so I went back into his office and requested he remove the thing entirely and he books me in for a couple days time. Looking at it he said it is probably only 10% chance melanoma but best to get it removed if I'm paranoid. A week later I go in for results and it's melanoma. ( I kinda knew though as I had missed the appt and they rang me to tell me I needed to come in. I was told by my original DR they had got it all and I requested the pathology report to go over with my brother in law who is a surgeon. ( So glad I remembered to get the report before I left or it would of been a long night of horror not knowing exactly what I was looking at ) From the report they hadn't got it all. The next day I went back to the gp who removed it to get a referral to a melanoma clinic as my brother in law suggested and he told me it was in situ. I had to tell him, no it's invasive... clarks level 3. He didn't know what a clarks level was, I googled it for him. He didn't give me the right referral and I have to go back again tomorrow and try to get the right one. I found out Friday night and have been sick with anxiety, cant sleep... just dozing off here and there and waking up startled believing I'm dying. The report is pretty good, it's the regression that has me sick with worry and the fact there is still tumour in my arm. I have also had symptoms the past few months that are not normal for me that I have googled and of course it's cancer to the internet. I also have a sore right armpit presently so I'm  terrified. Over the past few days I have spent my time on here reading posts. I know I should stay of the internet but this site has helped. Sorry for the babbling, with my anxiety I tend to over share lol

Here is my pathology report.

Diagnosis:
Skin excision, left deltoid:
- Superficial spreading melanoma, 12 mm
- Clark level III, Breslow thickness .47 mm
- No ulceration; mitotic rate less than 1/mm2; ( insufficient intradermal tumour for proper count )     -Regression present
- Peripheral margin involved

Host immune response: Present
Regression: Present

Microsatellites: Absent
Vascular Invasion: Not identified
Perinueral Infiltration: Not identified

Predominant cell type: Epithelioid
Desmoplasia: Absent

Association with a coexistent Benign Melanocytic Lesion: Absent

Margins of  Excision:
-Tumour extends to superficial
-Deep excision margin 3 mm

Thanks so much for your time

Michelle :)
 

 

 

 

 

 

 

 

 

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