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.

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dukester909's picture
Replies 21
Last reply 9/14/2020 - 7:54am

52yo male, good health other than this!

Biopsy from mole in belly button returned malignant melanoma in early August 2020. Specifics:
Breslow thickness: at least 0.9mm
Ulceration: Not identified
Mitotic rate: 0 per square mm
Margins: present at margins
Lymphovascular Invasion: Not identified
Neurotropism: Not Identified
Regression: Not identified
Pathologic stage: PT1b

2 weeks later I had a WLE surgery to remove belly button and melanoma, also a SLNB in groin area at same time, results:

A.Benign sentinel lymph node - negative for tumor
B. Malignant melanoma:
Brelsow depth: 2.2mm
Clark's level: IV
Host repsonse: brisk
Satellitosis: Absent
Vasucular space invasion: Absent
Perineural invasion: absent
Ulceration: Absent
Mitotic rate: 0 per square mm
Regression: Not identified
Surgical margins: Not involved

Had a full body PET scan 2 weeks later (last Wednesday) and results showed normal - no metastais, no cancer identified anywhere
So right now I am at stage IIb.

Met with oncologist a week ago today which was a blur for the most part but he set up checkups with him every 3 months for bloodwork and scans (probably CT or ultrasound - he wasn't clear on this -of abdominal regions every 6 months).

He also mentioned a clinical trial in a nearby city of an immunotherapy drug ( Opdivo, I think?) used in stage III and IV for a preventative treatment in I and II. I meet with the Dr. in charge of that at the end of the month to learn more.

Right now, only a week after meeting with oncologist I feel like I should be elated at results of SLNB and PET scan, but I oscillate day to day from joy to being totally scared. The last 6 weeks have been the most terrifying of my life. My wife has been a rock through this but I know she wants me to focus on each day and not on my fear of recurrence, which has kept me up more than a few nights the past week.

I already had checkups at a dermatologist since my early 20's twice a year but somehow this one got past him - he already did a biopsy on it in 2016 and it was all good then so I thought I never had to worry about it again - wrong! I had to point it out to him earlier in the summer when it was bothering me as it didn't feel right.

I am covered in moles and have had many biopsies taken before with no melanoma until this one, so I am scared scared scared. Should I be doing more? I thought about going to 2 different dermatologists. I don't know how to function at times during the day. I know I am looking for some optimistic assessment or statistic but I know nothing is a guarantee. I just wanted to see what info the folks on this forum can provide!

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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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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mrbill16323's picture
Replies 4
Last reply 9/15/2020 - 12:09am

Hello all. Thankful for this place we discovered today. I've been to my dermatologist just about every year as I am dark-skinned caucasian any have had many mole growths and age spots over the years, but none have been cancer. Three weeks ago I hit my hit getting out of a golf cart and my baseball cap buttom squished into the crown of my scalp and bled a lot. AFter a few days the scab did not look "normal" and still had bleeding. My wife and I jumped on it, and luckily was able to see a dermatologist (not my regular dr) quickly. He performed a crown shave biopsy. A week later got this test result: malignant melanoma, deep and peripheral margin positive. Histologic type: superficial spreading melanoma. Maxiumi Tumor (Breslow) Thickness : 2.05 mm. Macroscopic Satellite Nodule: not identified. Ulceration: present. Anatomic (Clark) Level: IV (melanoma invades reticular dermis. Mitotic Rate: 4 mitoses per mm2. Microsatillite(s): not identified. Lymphovascular invations: not identified. Neurotropism: not identified. Tumor-Infiltrating Lymphocytes: present, nonbrisk. Tumor Regiossion: Not identified. Margins: Peripheral Margins: involved by invasive melanoma. Deep Margin: involved by invasive melanoma. Pathologic Stage Classification (pTNM, AJCC 8th Edition): Primary Tumor (pT: pT3b)

Sadly, we saw the test result before any one from the hospital or the doctor responded to us because it was Labor Day weekend. Dermatologist Doctor apologized for that. On Tuesday Sept 8 he said I could go into surgery the in two days for removal, but rather he recommended that I wait for the hospital's Melanoma multi discipline board to meet Sept 16 to review my case and recommend treatment. So I agreed to that, not knowing or understanding much about the test results other than I'm in trouble. The doctor did not look over the rest of my body, just did the biopsy, and that does concern me. To be fair, my greatest concern was the rapidly growing (within days) ulcer on the top of my head! Doc says nurse coordiantor is supposed to call us to explain further what will happen next, but I called to talk to her and she said she has nothing to tell me and doctor will call me on Friday. This is concerning. I feel like I'm floating in limbo. Is this a normal course?

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THMoore's picture
Replies 14
Last reply 9/9/2020 - 9:17pm

Today I had my first infusion of IPI/NIVO. I met with a backup oncologist because my primary was on vacation. She explained that since I was on NIVO and had a new tumor appear in my liver, The IPI/NIVO would now only provide me a 30 % chance of survival. I had partial success with 3 NIVO treatments, 6 small nodal tumors either went away or decreased in size and are no longer showing active in a PET. So have many of you had success on IPI/NIVO after partial success on NIVO? Or has anyone heard that there is only a 30 % chance of IPI/NIVO working after partial success on NIVO. Everything , I read gives the combo a 50 to 60% chance. As always I truly appreciate your responses.

Thanks Trent

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Julie in SoCal's picture
Replies 5
Last reply 9/8/2020 - 7:02pm

Good Afternoon, Friends!

The last few weeks have been a whirlwind (or a dumpster fire on a train wreck).

But first the good news: All cancer in my body (minus head) is gone! This is a better than hoped for response. The chemo hell has worked!

Now the bad news: I have numerous tiny (5mm is the biggest) brain mets and cancer in my spinal fluid. At this point we know it is Larry the Lung Cancer, and that I am an EGFR Register (targeted therapy didn't work very long).

The current plan is to get a plan. I'll have a full spinal MRI (Atavan take me away!!!) and a meeting with the expanded brain trust at St. John's on Tues. I also should have the results from my second (technically third -- one missed) spinal tap.

As I understand my options, they are:

1. Whole brain radiation
2. Chemo poured directly in my brain via a port.
3. Immunotherapy. (I'm currently on the ipi/nivo combo)

I am not a fan of whole-brain radiation. At this point in time, I don't have any neurological deficits that are apparent, anyway. WBR would leave me with some. I have no earthy idea why I would do this at this point in my life.

Chemo poured directly into my brain makes sense, but it's kind of forever, and I have to imagine that my quality of life is going to take a significant hit. But, if I understand it right, if it works, it works fast. I'm just not sure about the math. If I spend 6 weeks in chemo hell again what does that buy me? 6 months of good life? 3 months?

I am a big fan of immunotherapy. This is probably my melanoma bias. I know it crosses the blood brain barrier, and I know it works in the brain and CSF. And I have tolerated it fairly well. It's not hell and it's manageable. So life would be reasonable. But I also know it takes a while to work and that it may make things bigger before getting better. This doesn't sound like what is currently needed. Also I'm not finding anything on immunotherapy and lepto disease in NSCLC. I suspect this is because brain involved peeps don't make good ratties.

So, friends. Am I thinking right? Talk to me.

Peace to you!
Julie

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MelanomaMike's picture
Replies 8
Last reply 9/16/2020 - 3:27pm

Hi ya'all, well, were postponing my trial til' we get my pains somewhat under control, if the "problem" wasnt in my ass area then it would be tolerable to endure the drive to the clinic, the sitting in the recliner off & on all day, the constant need to run to the toilet (my pains feel like i have to go #2 most the time when i dont have to), so, once again, my "ass" has literally taken over my life AGAIN, I swear to God i wanna chop my ass off & just be done with it, i mean comon'! Were going on like what?, 6 months of this, my ass this, my ass that, when folks ask me "Hay Mike how ya feeling?" Its always the same answer, "I feel pretty good except for my Ass Bob", & How bout' you?.....
So ya, thats where im at right now, this coming Wednesday ill see both Hamid and my surgeon Dr. Faries to talk about yes, you guessed it, my ass and the STRONG possibility  of getting a CT Guided "Nerve Block",  doesnt that sound good to anyone out there who is in extreme pain? Hell yeah it does!..well guys, enjoy your Non-Laborous few days ahead of ya's and i will try and do the same, Take care guys love ya's...

What doesn't kill you only makes you wanna Go After It And Kill It! www.covvha.net

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RACLAU's picture
Replies 2
Last reply 9/9/2020 - 2:45am
Replies by: RACLAU, gopher38

I've been reading the forum since my father was diagnosed with stage 4 melanoma earlier this year, and have appreciated the wealth of knowledge and information. I'm hoping to get advice on next steps after probable progression on Ipi/Nivo. I've posted his history below and what we've been presented with as potential options.

Background: Age 74, previously healthy and active, diagnosed with localized prostate cancer (Gleason score 7) in 2018 & completed proton beam radiation treatment in January 2019. Possible history of ulcerative colitis (1 episode in 2016 - likely diagnosis, but never confirmed). Melanoma with unknown primary diagnosed as solitary lung met in January 2020. BRAF wild type (positive for mutations in ATRX, MYC, TP53, NF1 and GNAS). His melanoma oncologist is Dr. Lawrence at Mass General.

January 2020 - VAT surgery to remove 4.5 cm lung mass in lower left lobe (originally misdiagnosed as primary lung adenocarcinoma, but pathology after surgery came back as melanoma - big surprise, given no prior history of melanoma). The decision was to "watch and wait" and re-scan in 6 weeks, rather than immediately starting immunotherapy - this was based on the fact that it presented as one solitary met (as therefore could have perhaps been slow growing), and the potential history of ulcerative colitis.

March 2020 - Scans showed new lung nodules (up to 1.6 cm) and a new 1.5 cm lesion in the brain

April 2020 - Craniotomy to remove the brain lesion (tolerated and recovered well, other than developing a blood clot in one calf - currently on Xarelto). Started Pembrolizumab, and received 4 doses total. Well-tolerated, no side effects at all.

June 2020 - Scans showed progression - increase in the number and size of bilateral lung nodules (largest 2.4 cm), and suspicion of possible small mets in other areas (one nodule each in kidney, retroperitoneal space, S1, and T8). Brain scan clear. Decision made to switch to Ipi/Nivo combo (given that Pembro was well tolerated). Received 2 doses of the combo (on 6/24/20 & 7/14/20) - initially well tolerated.

August 3, 2020 - 3rd dose of combo held due to rising AST (51)/ALT (45). Plan was to re-check in 1 week.

August 9, 2020 - Onset of severe headaches and fevers - admitted to hospital for scans and workup. Brain MRI clear. CT showed increase in size of some lung nodules (up to 2.7 cm), but nothing new. LFTs peaked on 8/13/20 to 609 (AST) and 352 (ALT). 60 mg prednisone started, and liver biopsy indicated immune checkpoint induced hepatitis. Developed an additional blood clot in the same leg. Discharged on 8/15/20 feeling well, and remains active (walks 2 miles/day).

Current situation - He is on a prednisone taper (60 mg week 1, 50 mg week 2, 30 mg weeks 3 and 4) - current LFT is AST=46, ALT=71. Dr. Lawrence said that even though the radiologist read the most recent scan as overall progression, he saw a few areas on the lung that looked smaller. The current plan is to re-scan in a few weeks once he is down to a lower dose of prednisone. If there is any evidence of response, Dr. Lawrence will consider giving another dose of Ipi/Nivo (with close monitoring of liver function), given that there are limited other options. Our understanding is that his recent history of prostate cancer, and now the high-grade hepatitis, disqualify him from most clinical trials. There is a phase 1 trial he may be eligible for that involves adoptive cell therapy with a MAGE-A4 target T-cell (Surpass: ADP-A2M4CD8 in HLA-A2+ Subjects With MAGE-A4 Positive Tumors - NCT04044859) - but he would need to match on HLA type and have MAGE-A4 tumor expression (we don't know yet if he qualifies). He also has a subcutaneous nodule on his scalp that could potentially be melanoma - so another option is to biopsy the nodule to see if it's melanoma, and if so, consider TVEC.

Are there any other treatments that we should be considering, or other potential clinical trials that he may qualify for?

Thank you so much in advance for reading this long post, and for any input or advice.

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My wife has had recent disease progression accompanied by LDH (lactate dehydrogenase) levels spiking over 1,000. Are there any meds/therapies to bring LDH down to help w/ tumor suppression? Our main oncologist says "no" despite there being some good papers from the last 5-10 yrs on meds that can reduce LDH in the lab. Some natural supplements that might reduce LDH include Green Tea Extract, Xi Jue Teng (spatholobus suberectus) and Gossypol (cottonseed oil). We are trying the first 2. We also have some Hydroxychloroquine (HCQ) which was going to be used with TMZ about 6 months ago, but it was decided to skip that in favor of another targeted therapy. HCQ has been in some clinical trials as a good tumor suppression agent, works as an Anti-Autophagy agent to suppress tumor growth. I can't convince my wife to just start trying HCQ to see if it helps. Any experience or advice with this? Seems like some docs at Univ of Penn are big fans of using HCQ with cancer/melanoma.

Thanks!

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LH2000's picture
Replies 3
Last reply 10/7/2020 - 5:02pm
Replies by: chipgoodhue, LH2000, Bubbles

My wife is stage IV for last 22 months. NRAS mutation. Many therapies (6) have been tried with some mixed results, but some grade 2-3 Adverse Events and now some continued progression. Tried Ipi/Nivo, Nivo solo, Ipi solo, Trametinib solo, Olaparib solo, Binimetinib + Ribociclib. Time for a clinical trial. Had 2nd opinions at MSK, MDA and Moffitt. Going to work w/ Dr. Khushalani at Moffitt in Tampa. Debating whether to do TIL (Tumor Infiltrating Leucocyte, Adoptive Cell Therapy) vs. another type of targeted chemo (Ceritinib + Trametinib).

1. How successfully is TIL? We've heard at may be as low as 30% or as high as 50%.......
2. How hard is it to do the TIL therapy? How long in the hospital and how traumatic is it? Sounds pretty tough when they use heavy IL-2 etc to essentially get rid of the "old" immune system so that a "new" immune system to better fight the cancer is pumped back into you.
3. Any other advice or insights on options, especially for NRAS which doesn't seem to be able to be targeted directly?

Thanks!

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AMcReader's picture
Replies 15
Last reply 9/3/2020 - 6:35pm

I’m sad/furious/heartbroken/angry to report that the biopsy for the spots in my peritoneum came back as melanoma. So back in the treatment ringer I go!

I had a long chat with my oncologist last night and made the decision to do a BRAF combo with PDI immunotherapy. I am blanking on the names of the drugs right now because they are not ones that I’m that familiar with yet. Essentially, these are the drugs from the INSPIRE trial which I understand are now FDA approved.

I am excited about this treatment plan because I’m hoping I’ll be able to get some quick pain relief, but also build up a durable response rate with PD1. My oncologist shared that for patients like me they are seeing 70% PFS at 6 months and 30% PFS at 30 months (which is where they start to see a leveling off), so I will remain incredibly hopeful that I will be part of that glorious 30%.

I’m allowing myself a couple days of sadness, but also working on building my strength and determination back up to get into this fight again. I have an amazing, kind, loving, soul-mate of a husband to fight for and my hilarious, sweet, spunky, beautiful little girl!

Back in the ring I go! Determined to know this shit out again.

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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New CDC report shows 94% of COVID-19 deaths in US had underlying conditions.
I find the specific breakdown of underlying conditions very interesting since this further shows how unhealthy lifestyle and diet influence these exact underlying conditions which play a detrimental role in the outcome of not only Covid infection but a multitude of other illnesses as well.

https://www.nbc4i.com/community/health/coronavirus/new-cdc-report-shows-...

I also came across the following quote which resonated with me since I am living proof of the following context.

"If you do not make time for your wellness you will be forced to make time for your illness. Read that again."

Melanie

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Anyone experienced abdominal fluid due to liver tumors? Mom is in ER as her belly was swelled up and she was having hard time breathing. CT reveals fluid due to large tumors in liver . She is scheduled for radiation on Tuesday to spin Mets and doc cancelled her carbo/taxol infusion as he found a spot for her in a trial xmab20717 which is similar to ipi/nivo
I am less hopeful of the trial seeing she only progressed on ipi/nivo last year . I don’t know why he is so hung up o this particular trial.
Her biggest liver tumors are 7cm,5 cm , 4 cm and 3 cm with many innumerable ones. If the trial doesn’t work I think then there will be no time left to do anything else. It’s been 3 months I have been trying to get her on some treatment at UCSF. Multiple appointments and still no treatment only thing I have been hearing is we are looking at options. Meanwhile her disease progressed like a fire and she started to decline.
Sorry for the vent here.
Getting back to my question does anyon has any experience with abdominal fluid from tumors and has recovered from it ?

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Beany's picture
Replies 10
Last reply 9/2/2020 - 3:59am
Replies by: Beany, ed williams, MelMel

Hello everyone,
I haven't posted for a few months. I was in hospital with raised ALT levels but felt fine.

After infusion number 3 of the ipi/nivo combo on April 2nd, my ALT crept up to 748 so they put me on Prednisone and even Mycelophate Mofetil. My ALT is now at 75 and slowly coming down. I am on 35mg of Prednisone only which the doctor is cutting by 5mg per week.
I have been fortunate and achieved very good reduction in the lung and liver tumors. The 20mm and 15mm tumors in both lungs are not visible on the latest CT. The liver is nearly there too. I want to go onto Opdivo alone and give myself the best possible chances.

The doctor said because the ALT went up so high, he doesn't want to give me Opdivo as he said the risk is too great.—I could die or suffer liver failure. He also said that because I have had very good response, it is not necessary at this stage to administer Opdivo as the combo is still providing reduction. He wants to monitor with regular three-monthly CT scans and go from there.
I am in Japan where the doctors are overly cautious and very careful.

Is this normal to not be refused Opdivo due to ALT going up so high?

Thank you in advance,

Adam

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Chelem2's picture
Replies 2
Last reply 9/3/2020 - 10:45am
Replies by: kwb, QuietPoet

How frequent is it to have moles biopsied after the first primary melanoma? And if multiple biopsies do they ever come back normal? For some reason my biopsy wasn't logged into the system so I am having to wait still on my biopsy. Will end up being double the wait they said.

The doctor said he wouldn't have ever chosen that mole to biopsy except it showed up new. I am driving myself crazy! It was just a dot. And my original Stage 1A was on my leg, this is on my back. What does that mean? Or does it mean anything? I never know what to ask in these appointments and I get too deer in the headlights. It just makes me go tilt emotionally and all sense abandons me. Not proud of that!!!

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How long has the swelling lasted after completing treatment? Hubby's still on prednisone 5mg (2.5 yrs) and still experiencing intermittent facial swelling, skin redness, rashes, vertigo... Every time he tries to taper, it gets worse. He had a grade 4 rash with his first dose of Keytruda and Opdivo. Went to only opdivo for his next 11 months. Has always had the swelling and symptoms.

We are grateful for the survival of the stage IV melanoma. He had a 13cm lesion under his left arm and seven internal lesions. We had our first treatment in September 2018 with dramatic reduction in tumor load BEFORE Christmas. We continued treatment until November 2019.

Nan

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