MPIP: Melanoma Patients Information Page

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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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sing123's picture
Replies 9
Last reply 9/24/2020 - 9:54pm

Hi all. I have had just one infusion of the combo treatment so far and have a backache unrelated to a side effect. Which is better for me to take, Tylenol or ibuprofen for the backache? I seem to recall some posts about staying away from one of these painkillers or other while on Immunotherapy.

Thanks!

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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dukester909's picture
Replies 1
Last reply 9/24/2020 - 9:19pm
Replies by: Mark_DC

Hi again, I posted once before ( https://melanoma.org/legacy/find-support/patient-community/mpip-melanoma... ) but basically a 2.2mm deep mel in my belly button. I had WLE surgery to remove umbilicus and SLNB showed negative as did a follow up full body PET scan.

For those who remember, I was asking earlier about a possible clinical trial option for stage 2 and as it turned out when we went to find out about it the trial had closed earlier in the month, so that was never an option anyway. This was the trial if anyone was interested: https://clinicaltrials.gov/ct2/show/NCT03553836?cond=Melanoma%2C+Stage+I...

At the meeting with the new oncologist about the possible clinical trial, I brought up the question of whether my original WLE surgery margins were sufficient based on this page:
https://www.aimatmelanoma.org/how-melanoma-is-treated/surgery/
which has this chart:
Thickness (Breslow Depth) of Melanoma Determines the Size of the Margin

Tumor Thickness Surgical Margin

In Situ 0.5-0.1 cm
Less than or equal to 1 mm 1.0 cm
Greater than 1.0mm to 2.0 mm 1.0-2.0 cm
Greater than 2.0 to 4.0 mm 2.0 cm

Mine was 2.2mm, and no mitosis btw. However in reading the path report from my surgery it says "Surgical margins are free by at least 1.0 cm", which sounds to me like not wide enough?. I asked my surgeon about this and the reply I got was : "additional surgery for a wider margin was likely going to require a much more extensive surgery that would not be worth the benefit since margins were already at least 1 cm. The NCCN guidelines are written with an asterisk that they may be modified to accommodate individual anatomic or functional considerations".

So the new oncologist I met with about the clinical trial asked his surgical oncologist about this and he said I could just watch the area for local recurrence (I am going every 3 months to oncologist), or to consider a wider resection if this is going to be hanging over my head worrying about a local recurrence; IOW if I have a local recurrence, will I wish I had had the secondary resection.?

I am probably going to meet with the surgical oncologist either way to hear what he says about a secondary but I would like to know what the thoughts are here. Sounds like my original surgeon thought a much wider excision there (umbilicus) was going to be quite a big deal. Unfortunately I didn't know any of this before the original surgery and couldn't ask these questions then.

By the way, in looking up clinical trials for stage 2 I came across this trial, which seems to be asking this very question of whether 2cm margin is worthwhile:
https://clinicaltrials.gov/ct2/show/NCT03860883?cond=Melanoma%2C+Stage+I...

I thought I could move on to just looking forward to not thinking about all this so much after the trial ended up being closed but now I am back to being dazed and confused again....

Dukester

Stage IIb diag 8/20 Initial biopsy: Breslow: 0.9mm Ulceration: Present // SLNB - negative for tumor WLE Surgery: Brelsow depth: 2.2mm Ulceration: Absent Mitotic rate: 0 per square mm Surgical margins: Not involved // Full body PET: Normal

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SOLE's picture
Replies 12
Last reply 9/24/2020 - 4:20pm

Dear all good people reading this board,

My thoughts go out to all of you. I have become some kind of an «old timer» here since my diagnosis. I still do read this board pretty regularly and chime in when I can be of help.

I long to know how Maureen's husband is doing or Jenn or Hawaii Bob who had tumour very similar to mine about 10 years ago now.

This board is our comfort place. Thanks to everyone at MRF and the «specialists» that have contributed more than I can really appeciate fully (Bubbles, Ed and many others, forgive me for not being able to mention here)

At the beginning of my journey in July 2016 I promise myself that I would share my progress until I did from this disease. That was expected with 50% odds at 5 years.

Further analysis on my case, better understanding of recurrence odds (AJCC 8) and life-saving treatments in so many forms now have forever moved the needle to combat this awful disease. I am a fervent believer of manipulating the microbiome alongside immunotherapy treatments to move the needle even more in the coming months and years.

My heart goes out to all of you. This is scary beyond comprehension for almost anyone not living/having lived with a cancer diagnosis. One day, it's going to be seen like a flu. Hopefully not the COVID 19 type...

So, I'm simply reporting 4 year NED after initial surgery to my right foot sole with a real bad ulcerated tumour.

It can be done. It is done. Every day. At any stage. Let's not loose this saving grace board ever.

We are all a beacon to each other.

My loving thoughts to all of you.

M

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Daisy2018's picture
Replies 9
Last reply 9/24/2020 - 1:27pm

Hello my fellow melanoma bravest. I have been reading here for a while and this is the first post. You are an amazing group of brave people which gives newbies a lot of courage to keep fighting. I used to think that stage 4 in cancer is you have to make your funeral arrangements and I see many people living decent quality of life still. I was diagnosed with stage 1b in February 2020, had a surgery and was clear. Last month I had a scan and it followed with the surgery with stage 3c.
I am still recovering with a drain in my leg and lots of discomfort. Not taking any pain meds though.
Couple question if I may?!
One oncologist had offered targeted therapy since I am BRAF positive and another one offered immunotherapy. I feel I have more chance of remission with immunotherapy. What is the opinion here?
Second question Is about post op cares. Did you use ice? What else did you do to recover faster? It’s getting quite annoying hopping on one leg.
Thanks a lot!

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BillB's picture
Replies 6
Last reply 9/24/2020 - 2:46am

Hi, I still visit every day and I'm continually amazed by the support and caring provided to and by members of the forum. My thoughts and prayers are continually with with everyone! I reached the 3 year NED mark last week and reluctantly am moving to scans every 6 months. I had my last Keytruda treatment on 12/4/19 (2 years and 5 months, NED at 9 week scan, I wanted to make sure to get it all and didn't really have deal with side effects) and the minor side effects of fatigue and joint pain have reduced significantly.
Bye for now and best wishes to everyone. Keep fighting!
Bill

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sks2019's picture
Replies 9
Last reply 9/24/2020 - 1:20am

Update on mom : She is in ICU for last 7 days. yesterday was the first day she opened her eyes little bit when i called out. She was admitted last Monday as she was having diffuclty breathing and was confused. We took her to hospital to find out her kidneys have shut down
Last Monday I was told not to opt for ventilator and let her go. I coudnt let her go. I insisted on getting her in ventilator. Four hours later I was told her kidneys have shut down and I should let her go. Again I insisted on getting her in dialysis. I was told she is paralyzed. Tuesday she was responding to my calls and moving her legs and feet. Wednesday- breathing without a ventilator and they are planning to take her off the dialysis. It has been very hard to be with her in the ER listening to the docs that she is passing away and I am making her suffer. I wonder they teach empathy in the medical school. The same doc who told me all this comes back and tells me this is just temporary since she has cancer in her bones she will be back to this condition in few months. I wanted to ask how many folks here had melanoma in bones and other organs but are still here ? I know fighting with this disease is not easy and I have lost so much personally and professionally to care for my mom but I would still want her to get well and be with me as long as possible. I just believe if it’s time God will take her but I will fight for her until I can. Please share your story if you have fought it through stage 4 and still here.

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AMcReader's picture
Replies 6
Last reply 9/23/2020 - 11:47pm

On Tuesday of this week, I started the first part of my new treatment plan by taking Vem and Cobi and WOW what a difference that has made!!!!!!!! In less than 24 hours, I was FINALLY able to eat without pain again — something that has been beyond uncomfortable for me for the past 2 months while I dealt with these lesions in my peritoneum. I ate three full meals yesterday and will again today and they all felt normal, amazing, PERFECT. I don’t want to make it sound too grand, but it was a HUGE relief and made me realize how much pain I was walking around with and what a weight that has been.

Now, here’s hoping that this fast relief and the Atuzo immunotherapy that I’ll be complementing it with soon will bring long and lasting success!!

Always happy to hear from those who were part of this trial and those who have had long-term success on the inhibitors.

Sending hugs to all of you fighting your own battles today. I know it can get dark sometimes.

Amanda

Stage IV — one brain met (resected via craniotomy 3/1/18 and subsequently treated with SRS) and two lung mets. Started Opdivo 4/16/18. Opdivo not eliminating lung mets, so on 12/5/18 started Ipi/Nivo combo.

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Summer S.'s picture
Replies 8
Last reply 9/23/2020 - 11:27pm

Hi everybody,

My mom has been stage IV since 2018. We have just unlocked a new melanoma level, brain mets, which happened alongside with drug-induced neuropathy

Fast forward, radiotherapy, neuropathy treatment (minor improvement), drug vacation and all the weird symptoms that comes and goes due to all the new fuzz happening in the brain. It has been a roller coaster.

With very very few options left now, we are re-initiating keytruda, as a single agent, tomorrow.

I am super scared and not knowing what to expect, we are also all super exhausted with everything that happened in the past 2 months.

Please keep my mom in your thoughts and prayers, it is all much needed.

Love you all,
S.

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tkoss's picture
Replies 5
Last reply 9/23/2020 - 11:07pm
Replies by: MelMel, tkoss, Anonymous

as i read MPIP BB and refer to AIM and other melanoma and cancer websites and blogs i got to thinking.

there is no reference material in my docs offices. no pamphlets ,no handouts, no website recomendations , no nothing for resources. This is true of my hospital based infusion clinic nor the big 400 Doc Onc practice I was first referred too.

in the initial stages i had no info and could not really ask any intelligent questions of my docs. It was only after SLNB that i realized i needed more info from other sources.

there is more literature on Weed Eaters at the Home Depot than cancer info in my Onc's office.

I found AIM and MPIP on my own. One onc did get me a photocopay of the NCCM guideline pertaining to my stage of cancer. 1 sheet. From then on it was' 'standard of care' and 'trust us:"

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sing123's picture
Replies 17
Last reply 9/23/2020 - 8:52pm

Hello dearest Hero Mentors. Had a delightful brief reprieve but the cancer is back and in my brain. I’ve 3 lesions discovered recently on an MRI and am
going boldly into whatever I need to do. Starting with stereotatic radiation.

Can anyone please provide advice on this type of radiation? Is one preferable to the other, such as is cyber knife better than the generation of Stereotatic preceding?

Should I follow up with immuno again? Was on Opdivo am my oncologist told me the Opdivo has worked as it has not returned to the rest of my body, however the brain is very difficult to penetrate with immunotherapy.

Will I live? I have so many questions. I have so many hopes.

Cindy

Diagnosed 4/18 Stage IIIc; WLE on head, started Opdivo 5/18; new spots 10/ 2018; 2nd surgery; Last Opdivo 3/19. 3 brain mets recur 6/20; now Stage IV; SRS + starting Ipi/Nivo 8/17 2020.

I'm Still Here!!!

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jag's picture
Replies 14
Last reply 9/23/2020 - 8:39am

Hello everybody, 

Very sorry that I didn't give myself a shout out for being disease free 10years in March.  I remember how inspiring that used to sound.  My treatments involved biochemotherapy, interleukin 2.  Lung removal surgery and 6 brain surgeries, SRS and patch brain radiation, lots of prayers and a supportive wife.

My philosophy was never give up until you know all of the options are out, and know all of your options in case scans come back with bad news.  I used to get daily google alerts for melanoma survivors and new melanoma therapys to have knowledge and inspiration.  

The other reseource I used was clinicaltrials.gov.  I used to study those expermental therapy's like a Sears toy catalog seeing which trials would apply for me.

Since my last brain surgery, (2010 for getting rid of radiation necrosis) I have started my own housecall veterinary business (with my wife) had a son (Jedd (named after the great Jedd Wolchok)) who will turn 6 on May 5, torn down a house and put a new one in it's place,  

So, to sum it up,  There is life after melanoma survival and just because the chips are down doesn't mean you are out of the game.  When I go to church I often pray for the people who are fighting and their loved ones supporting them and those that have been lost(see I haven't forgotten my peeps).

I wish everybody well.

Best Regards,

John

Insert Generic Inspirational Motto Here

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Immune-boosting cancer treatment may pose cardiovascular risk
A type of cancer treatment used to boost the body's immune system may worsen inflammation in the arteries that distribute blood from the heart, according to a small study.
The research, published Sept. 8 in the American Heart Association (AHA) journal Circulation, found increased inflammation in the large arteries of 20 Austrians with melanoma immediately following treatment with immune checkpoint inhibitors. The drugs are a type of cancer treatment known as immunotherapy because they strengthen the ability of the body's immune system to attack cancer cells.

"The study provides evidence that [immune checkpoint inhibitor] therapy aggravates present atherosclerosis and treating physicians should consider potential complications here," said study senior author Dr. Marcus Hacker, of the division of nuclear medicine at the Medical University of Vienna.

Immunotherapy has been shown to be effective for many people with cancers resistant to chemotherapy and radiation. Immune checkpoint inhibitors work by thwarting the part of the body's immune system that keeps it from responding too strongly, to protect healthy cells from being destroyed. Drugs that block immune checkpoints make it easier for the body's infection-fighting T-cells to kill cancer cells. But side effects include potential cardiovascular damage.

People who have cancer are generally at greater risk of dying from cardiovascular disease than the general population. A 2019 study in the European Heart Journal found that over nearly 40 years, more than 1 in 10 cancer survivors in the United States died from some form of cardiovascular disease, most often from heart disease. According to American Cancer Society statistics, there are about 17 million U.S. cancer survivors.

While the new study looked at people with just one type of tumor, Hacker said his team has since expanded its investigation to lymphoma patients, finding similar results that have not yet been published. What's needed next, he said, are studies that look at whether the increased arterial inflammation in people receiving immune checkpoint inhibitors leads to heart problems later in life.

A larger study that tracks patients for 10 or 20 years would be a logical next step, said Carolyn Miller Reilly, a professor at Emory University's Nell Hodgson Woodruff School of Nursing in Atlanta. She co-authored a recent AHA scientific statement about the intersection of cardiovascular medicine and cancer treatments—an emerging field known as cardio-oncology.
The changes they are showing here are not going to immediately demonstrate adverse events," said Reilly, who was not involved in the new research. "It's not like we're going to give this drug, and a month later the patient is going to have a heart attack. But it's going to cause plaque buildup that can become more unstable. Long-term, we may see the development of cardiovascular disease."

"The study does not suggest cancer patients—even those with pre-existing cardiovascular disease—should forego immune checkpoint inhibitor therapy, she added, noting that inflammation had worsened most in those with the mildest plaque buildup. "I would not withhold this treatment as the benefits outweigh the risk."
Instead, she said, oncologists may wish to consider strategies to mitigate any impact on the heart and consult with a cardio-oncologist to evaluate a specific patient's cardiovascular disease risk.

Reilly often teaches about the need for lifestyle changes to control risk factors for cancer and heart disease by optimizing weight, decreasing cholesterol levels, eating a healthy diet, exercising and maintaining good blood pressure control. "Cancer and heart disease have all the same risk factors," she said.

In some cases, medications may also be useful, Hacker said.

"If our study results can be replicated in prospective settings, we should think about future combination therapies with atherosclerosis-stabilizing agents like statins to potentially protect patients at cardiovascular risk from unfortunate events after therapy."

https://medicalxpress-com.cdn.ampproject.org/v/s/medicalxpress.com/news/...

Some food for thought and good to be aware.

Melanie

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Hi, I have been doing a lot of looking on this site and the web to get a better understanding of Radiation Necrosis vs Melanoma issues. I am much appreciative of the great info shared by other warriors in this battle. JoeyB had some really helpful info on RN that I thought I was going through. Hoping to hear his recovery is underway. My situation just took a different direction today after meetings at MSK in NYC.  Since my stage 4 diagnosis in zag 2011- two Yervoy series of 4 infusions, a bunch of SRS radiation sessions and a tumors removed from lower left lung lobe in August '11 and then the temporal lobe in Sept '13  was feeling pretty darned optimistic that I had the beast beaten back. Perhaps I am overly optimistic or just fooling myself but it's just the way I try to roll in life in general. My last SRS in June 2014 for a new tumor on the brain dura seemed like the SRS worked as of my Nov 2014 scan. Shortly after my clear Dec '14 body scan I began getting dull headaches which progressed to more painful ones signaling something was amiss.  I went in on Jan 27th for a brain MRI scan and Drs alerted me that it appears that the radiation necrosis call made in Nov was in fact more likely a melanoma  recurrence and they jointly decided ( my onc, radiation onc and surgeon) that given my tumors resistance to the usually effective SRS they want to get aggressive and remove it..  

I am bummed a bit that this isn't just some delayed radiation related swelling that steroids couldn't just solve but glad that they are deciding to get aggressive and go for a surgical solution. My recovery from the first craniotomy was really good so I am hopeful that the second time around is as fast. I am scheduled to get my surgery on Feb 10th.  Guess I'll be sitting down with the kids (16 and 14) and gingerly walking them through an edited version of what's going to happen. They were only 13 and 11 when I had the first brain surgery so I just told them I had a pressure spot I needed to get removed and I was hoping this would all just go away. I didn't want to scare them that young but I think I'd be remiss if I didn't give them better direction this go round.  Any suggestions on that discussion would be welcome. 

I guess this recurrence means my hopes of being a Yervoy responder might be out the window? Maybe so but I got lots of fight left in me to figure out my plan of action. Hopefully next weeks surgery buys me lots of time( forever hopefully) to think this through. 

Best of luck to everybody as we all face our respective challenges! 

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RJoeyB's picture
Replies 6
Last reply 9/23/2020 - 4:19am
It's been about six weeks since I posted about this and wanted to give an update following my most recent set of scans.  Rather than recap what's been happening, here's a link to my post from June (apologies in advance, it's entirely too long, as is this post, but no one ever accused me of not being thorough ;-)
 
 
So I've been on Decadron for the past six weeks to try to reduce the swelling and perhaps resolve the motor control symptoms I've had in my left leg, e.g. limp and awkward gait, knee weakness, reduced ankle motion, can't curl toes, etc.  I've continued to take my daily walks, 2-3 miles in the evening and some longer ones on the weekend, but really didn't see any improvement in motor control.  Some days a little better, some a little worse, but overall about the same.  I've also noticed in the past couple of weeks new weakness and range of motion in my left arm — the top half of my left humerus is a 10" titanium rod from back in 2010 to remove one of my original mets, so it's limited to begin with, but this limitation is new and definitely related to the motor control issue.  My expectation going into the scans these past two weeks was that things would be stable at best, with no indication if this was new tumor growth or radiation necrosis.
 
My regular three-month PET-CT was last week and in addition to the continued vigilance for the dreaded "new met", there were a couple specific things we were on the lookout for:  continued response of the lung met that was treated with SBRT in February and an area of possible concern in my distal ileum (near where the small intestine and large intestine connect) that lit up on my April PET.  We know that the PET will rarely be able to show anything in the brain because it naturally lights up "hot" throughout, so weren't expecting any answers, only looking to keep things uncomplicated as we try to focus on whatever is happening brain-wise.  Good news with the PET.  The lung met didn't even get honorable mention in the report for either size or activity.  The intestinal area is lighting up still but doesn't appear to be associated with any mass; given that it was also scoped (lower double-balloon enteroscope, longer than a colonoscopy into the small bowel) in May with no clinical finding, there is string belief that it's transient GI inflammation likely associated with the partial small bowel resection where the tumor used for my TIL cell harvest was removed about three years ago.  We've seen it before but have to continue to watch it.  And no new areas of concern elsewhere on the PET.
 
Monday was the repeat brain MRI.  Given how things have progressed, or not, I was expecting that things were going to look about the same and we were going to be in the same position as we were six weeks ago, without any real answers and looking at another period or observation — and more cursed Decadron.  The news was a little better, considering that I haven't had any improvement in the physical symptoms.  The "enhancement" or new activity all around the edge of the original tumor bed has substantially reduced, and the area of cerebral edema (swelling) extending outward from there is perhaps half to two-thirds of the size it was on the last scan.  This isn't activity that would be expected of new tumor growth on its own — remember, I'm not currently actively receiving any PD-1, ipi, or BRAF/MEK therapies — so this is likely radiation necrosis. Still potentially serious, as necrosis can continue to advance and be as problematic as a tumor.  But it can respond to steroids or even on its own over time.
 
The fact remains that I'm still experiencing motor control problems, but they believe that the necrosis should continue to resolve and as it does, the symptoms will also improve.  Even if the swelling is only half of what it was before, it's still squarely centered in the "motor control strip", so may not improve until it fully dissipates.  The plan is to try tapering off the Decadron over four weeks, to see if the necrosis will continue to improve on its own.  We're going to add Trental and vitamin E, which can assist but aren't nearly as effective as the steroid — I don't know a lot about either with regards to necrosis so won't say much about them — then repeat the MRI in eight weeks.  Should I experience any worsening of physical symptoms, resuming the Decadron is an option, but they want to get me off them as soon as they can...  no argument from me, it's a miserable thing — I need a good night's sleep and look like Humpty Dumpty, among other things, and my family is probably ready to toss me on the street from the moodiness.  Truth is, I've managed O.K. compared to the severity of Decadron stories I've heard from others.
 
So, it looks like radiation necrosis that is improving.  There is a possibility that this could be cyclical, with "flare-ups" of activity, which means continued vigilance for necrosis or new tumor growth if things change and periodic or longer-term use of steroids.  But my radiation oncologist also said that even if that happens, there is usually a "hump", often around two years, where even cyclical RN starts to settle down.  
 
Altogether, though, the news is as good as we could have hoped compared to where we were six weeks ago and allows our family to collectively exhale a bit — time to focus a little more on daughter #2's college search and break some of these crazy Decadron food cravings — back to the Stage IV limbo.  Hopefully the physical symptoms start to improve soon.  Just wanted to share — we learned a little more the past six weeks, if only I could apply the time spent to learning to play piano or something...
 
Best to all,
Joe
 

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Daisy2018's picture
Replies 7
Last reply 9/22/2020 - 5:55pm

Hello everybody,
I had an 4 lymph nodes removed as well as cut and reposition of sartorius muscle in the groin area. I like how is sounds, Greek or something. Anyway 2 weeks and going on 3rd I still have a drain. It drains quite a bit. The leg swells up a lot. It fells numb like a tree trunk. I used to have pretty legs. How long does it take to recover? I feel it will go on forever. I want start treatment sooner than later and can’t until all healed up.
What did you guys fo to heal faster? Thanks a lot!

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