MPIP: Melanoma Patients Information Page

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The same surgeon that removed Jackie's lymph nodes in August will be installing a port tomorrow. The port will be used for her weekly blood draws as well as the Yervoy infusions. Paperwork has been done with oncologist's office and specialty pharmacy to get the Yervoy delivered to our local cancer center. Yervoy has been requested for Thursday or Friday. Jackie will have the first Yervoy infusion Thursday or Friday if all goes well. We got a "treatment bible" from the oncologist's PA today, and have a much clearer idea of what to expect, who to call, what numbers to call etc. Her oncologist has treated melanoma before, and also has experience treating melanoma with Yervoy. Jackie also has an oncologist that has treated melanoma at the Mayo Clinic that we are working with who also is experienced treating melanoma with Yervoy.  We appreciate your feedback, your thoughts and your prayers as we take the next step in Jackie's battle with melanoma (left ring finger amputated, lymph nodes left armpit removed, lymph nodes metasteses recurred, PET scan shows melanoma in liver and lungs, liver biopsy postive for melanoma). 

Thanks,
Bruce and Jackie

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bruski1959's picture
Replies 3
Last reply 1/23/2012 - 10:26am
Replies by: bruski1959, TSchulz, Anonymous

We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

We have done the paperwork for Yervoy co-pay assistance.

Have contacted our insurance company United Health Care and the specialist pharmacy, and Yervoy is covered, but not sure what co-pay will be until the oncologist writes a prescription.

First  question is the potential side affects sound pretty terrible, but oncologists we have spoken with have not seen the severe side affects, more the rashes, and treatment with prednisone helps alleviate the symptoms. Is this pretty much the experience of others who have taken Yervoy?

Jackie's oncologist mentioned that he has seen more issues with the 3rd and 4th infusions than with the 1st and 2nd infusions. Is this the experience of others who have taken Yervoy?

I have heard numbers like 20% co-pay, and I have heard between $60,000 and $120,000 for total cost of Yervoy treatment. The Yervoy co-pay program looks like you pay $50 per infusion, and they will pay maximum of $5000. Trying to figure out what actual out of pocket expenses are for this for planning purposes. What has been the experience of others with paying for Yervoy?

Saw something about not being able to use health care reimbursement funds for Yervoy. We max out our health care reimbursement, and last year ran out in August, due to the several surgeries and hospitalizations. Is that really true you can't use health care reimbursement to help pay for Yervoy copay?

Has anybody used Yervoy with GP10? If so, were results any better than those who use Yervoy by itself?

The oncologists we have spoken to indicate that it is better to use Yervoy sooner than later, earlier on in the disease process, that it takes longer to start working, but it also lasts longer. Can anybody comment on this?

Appreciate any advice or answers anybody can provide.

Thanks,

Bruce

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zaccarin's picture
Replies 16
Last reply 1/21/2012 - 11:30pm

My husband had four infusions of Yervoy from September 9 to November 19, 2011. I will describe his situation with the hope that his story helps others and that someone might have some suggestions for him. At this point, we are truly in need of suggestions. We are in new York

Diagnosed with a scalp melanoma 2003, my husband had a sentinel node biopsy January 2004 and subsequently, removal of 31 lymph nodes, with one contaminated. The doctor then suggested what was believed to be the standard of care at the time, Interferon, alpha, which he had from for ten months, from 2004 to 2005. When we went to Sloan Kettering in 2003, we were told that he had a 30% chance of surviving to 2008. He was NED until 2009. During this period, he did qigong, and we incorporated a lot of raw foods and juicing.

My husband was very confident and happy that he had beat the melanoma, so he stopped doing qigong and let work responsibilities consume him. In fact, as he now has reduced his duties, three people are doing his job and having difficulty keeping up. This caught up with him, as in 2009, a PET scan revealed a one sub-centimeter lung nodule, an omental lesion of 15mm and a neck lesion in the area directly below the original scalp melanoma. He had surgery for omentum lesion 2009 and surgery for neck lesion on January 2010.

His melanoma became more aggressive after the surgery. It was, as I was told now, "in transit." In May 2010, however, another neck lesion in nearby location (under original left scalp melanoma in May 2010) spontaneously resolved within days. I had read on "Life Extension' that Tagamet could reverse melanoma, gave him some, and it seemed to work. The PET scan revealed that it had "resolved."  All that remained were the lungs.

The Daoist Doctor of Chinese medicine that my husband began to see in 2009 prescribed teas and food therapy that led my husband to have stable disease in the lungs until May 2011. It seemed to me that things only worked for short periods of time. Instead of one, now there were three sub-centimeter lung lesions appearing in the PET scan.  We then tried macrobiotics and a different form of qigong over the summer of 2011. The results were not good.  By August 2011, we saw the growth of three lung lesions and pleural thickening. The PET scan of August 15, 2011 indicated that there was a 10 cm. mass. Many suggestions, over the summer and after the PET scan that my husband should try Yervoy, so he began in September 2011 and he had his last infusion in November 2011. The November 22, 2011 scan indicated that the lung melanoma was now 17 cm. Terrible chest pain began after the 2nd infusion. The administering doctor told him that this pain was likely caused by inflammation caused by Yervoy.
In December 19, 2011, my husband began radiation.

I now understand that it would have been best to reduce the tumor load prior to beginning Yervoy. I know that there are late responders, and that these late responses can begin anywhere from six months to one year after Yervoy; however, if one does not have an increase in Absolute Lymphocytes and has an increase in tumor load that is greater than 25%, then it appears unlikely that one is a late responder. Additionally, while everyone I spoke with in the summer seemed to indicate that late response was the norm, I am now reading that it only happens in a minority of individuals. I am unclear about whether the 15-20% response rate to Yervoy takes into account late responders. I have not seen much literature or case studies on Yervoy late responders because it is so soon after FDA approval.

Had we known what we know now in 2003, this is what we would have done:

Obtain a molecular profiling test from Caris Medical, as this is covered by most insurance. http://www.carislifesciences.com/

We did this in the midst of Yervoy treatment at the suggestion of a colleague of mine. We discovered that my husband has low MGMT and that his tumor has a poor ability to repair itself. Given this, a strong dose of chemo, rather than immunotherapy, would have helped at the outset, when the tumor was less aggressive. Now, it obviously has been allowed to grow, and aggressive tumors are very clever at transforming themselves, so temozolomide would likely not be a good chocie.

Additionally, we discovered that my husband has high SPARC expression. This means that ablaxane, or nab-paclitaxel, might work. Studies for this on melanoma do not seem too promising, as it works on 14-20% of the study participants; however, it's not much different from Yervoy, so had we known this it would have likely been a better choice than Yervoy.

Molecular profiling is available, and I urge everyone to take advantage of it so that they can make decisions that are more specifically suited to their profile.

At this point, my husband is going to begin a radiation boost next week. We hope that the chest tumor, which is causing excruciating pain, will shrink and that the broken pieces of melanoma will cause the Yervoy to kick in, as this is what my husband's oncologist mentioned might be possible. He also has increasing vomiting. I hope that this is a late response to yervoy or related to his increasing use of painkillers. I noticed that Lisa13 mentioned that her oncologist believed that her nausea was related to a late response to Yervoy. I certainly hope this is true.

If anyone has any light to shed on possible options after Yervoy or helpful comments, i would be most appreciative. Hearing your stories, and your encouragement to each other has been inspiring, as being a caregiver is so terribly isolating and sad. I also wrote this because I urge anyone who begins Yervoy to reduce their tumor load, either by simultaneously having radiation or chemo, which can help Yervoy work better.

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Lauri England's picture
Replies 2
Last reply 1/21/2012 - 6:14pm
Replies by: NYKaren, lhaley

I ended up getting sick Wednesday night, throwing up and diarrah.  I assume a flu bug but I rescheduled my appt at Onc for Thrusday and was informed that my doctor only works clinic on Thrusdays now so I had to reschedule for another week.  I also rescheduled my appt with Melanoma clinic Friday just to be safe, although I was feeling better.  Anyway everything is postponed another week before I can ask questions or get any further info about my Pet results.  I do have an appt with dermatoligist Monday to have that thing on my neck biopsied.  He said it would be a punch biopsy.  What ever that means.  He also saw a suspecious mole on my right shoulder blade on my back that he also wants to remove and diopsy.  I had this appointment on Wednesday to at a new dermatoligist office.  Dr Miller and he was great.  I really liked him and he was very melanoma knowledgeable.  He said he found and sent 3 patients in the Lansing area to U of M for Melanoma last year.  He was very through.  I think it was one of the most through exams I have had since U of M.  Anyway very happy with him.  More moles to remove.  Yippy!!!

Don't sweat the small stuff. There are bigger fish to fry!

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Lilylove414's picture
Replies 9
Last reply 1/21/2012 - 5:07pm

Alrighty! My surgery to remove the rest of my lymph nodes is Thursday, January 26th at 9am! Hoping I don't get lymphidema, but it would be a small price to pay if I do. I get a week of recovery and starting treatment February 6th at 9:30am. Matt posted on facebook for people to shave their heads in support. I said I'm not losing my hair! He said well...let's just see who does it then! Spending time with Matt tonight and looking forward to beating this in the face! God is definitely good! He always provides! Anywho, have a great and blessed weekend everyone! Lots of love!

If God is for us, who can be against us?

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Replies by: triciad, LynnLuc

anyone experience palms that get red and itchy with little red bumps and hives?? Driving me nuts...sore, skin peeling started on palms now on wrists and sides of fingers...been going on for over 3 weeks...I am going to endocrine doc on Tuesday....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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OB Mike's picture
Replies 8
Last reply 1/21/2012 - 2:28pm

I am getting ready to start my first treatment with ipi. I have a lot of fears and questions, but my primary questions have to do with concurrent use of alternative immune stimulating therapies. Does anyone have experience with Naltroxone, intraveneous vitamin C, oleander extract aka Anvirzel? I am also curious about side effects of ipi, but most seem to say it is easy compared to past therapies?

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j.m.l.'s picture
Replies 2
Last reply 1/21/2012 - 2:23pm
Replies by: Donna M., scots

two tumors in arm, 4 prev removed. newest one on an artery. Surg. doesnt know whether it is on the artery or wrapped around it.

chemo did not shrink anything. most nodes prev removed but those damn mel cells are still lurkng around. Monsters arent they. Surg. says if mel is wrapped around he will leave it and then apply radiation. If lying on artery he could remove carefully. Scary to what can happen to my arm.

just dont need this in my life (65yrs)

To those w. lympedema concerns, I have it after 40 nodes removed. It can be managed. Use of a stocking daily and go for special lympedema  therapy. Its a commitment but worth it so your arm or leg doesnt get out of control. Unfort. you cant do the therapy yourself- you need the specialist.

thanks JML

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davidfromsingapore's picture
Replies 3
Last reply 1/21/2012 - 11:13am
Replies by: Ali, bdhf, deardad

I am sorry, but I am posting the same questions again.  I had 2 met removed via craniatomy and one via SRS.  Nothing in my body.  My oncologist at Mayo put me on Zelboraf.  My one remaining brain met is shrinking, and my last scans were clean.  I would like to know if there are patients out there who had brain mets and are on Zelboraf - like me.  How is it going?  What is your next step?  My side effects are brutal.  Loss of taste and hearing in left ear, general giddiness, loss of sight in right eye, and very tired all the time.  Docs don't know if it is due to drugs or disease (they think it is possible that I have leptomeningeal disease - meaning the cancer is attacking the meninges - or the lining of the nervous system).  I am 45 and before this I was pretty strong.  I am a runner and was running at least 20 K a week.  Now I can barely get out of bed soe days.  

So - any positive thoughts from NED brain mets and Zelboraf patients would be appreciated.  

 

Thanks, David

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ― Albert Einstein

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anyone experience palms that get red and itchy with little red bumps and hives?? Driving me nuts...sore, skin peeling started on palms now on wrists and sides of fingers...been going on for over 3 weeks...I am going to endocrine doc on Tuesday....

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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bruski1959's picture
Replies 10
Last reply 1/20/2012 - 10:00pm

We are considering Yervoy treatment for my wife Jackie who has metastatic melanoma. Started on finger last March, which was amputated in May with good margin. Then spread to axial lymph nodes on same arm, which were removed in August. 2 were macro, 5 were micro, 6 had no melanoma. PET scan in November showed recurrance in same axial lymph nodes, bright spots on liver, and potential places to occur in lungs. PET scan at Mayo last week shows axial lymph nodes brighter, spots on liver are brighter, and spots in lungs have started to light up too.

We have done the paperwork for Yervoy co-pay assistance.

Have contacted our insurance company United Health Care and the specialist pharmacy, and Yervoy is covered, but not sure what co-pay will be until the oncologist writes a prescription.

First  question is the potential side affects sound pretty terrible, but oncologists we have spoken with have not seen the severe side affects, more the rashes, and treatment with prednisone helps alleviate the symptoms. Is this pretty much the experience of others who have taken Yervoy?

Jackie's oncologist mentioned that he has seen more issues with the 3rd and 4th infusions than with the 1st and 2nd infusions. Is this the experience of others who have taken Yervoy?

I have heard numbers like 20% co-pay, and I have heard between $60,000 and $120,000 for total cost of Yervoy treatment. The Yervoy co-pay program looks like you pay $50 per infusion, and they will pay maximum of $5000. Trying to figure out what actual out of pocket expenses are for this for planning purposes. What has been the experience of others with paying for Yervoy?

Saw something about not being able to use health care reimbursement funds for Yervoy. We max out our health care reimbursement, and last year ran out in August, due to the several surgeries and hospitalizations. Is that really true you can't use health care reimbursement to help pay for Yervoy copay?

Has anybody used Yervoy with GP10? If so, were results any better than those who use Yervoy by itself?

The oncologists we have spoken to indicate that it is better to use Yervoy sooner than later, earlier on in the disease process, that it takes longer to start working, but it also lasts longer. Can anybody comment on this?

Appreciate any advice or answers anybody can provide.

Thanks,

Bruce

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Michelle's picture
Replies 1
Last reply 1/20/2012 - 8:45pm
Replies by: FormerCaregiver

My dad age 76 was diagnosed with stage IV melanoma cancer in November 2011.  He had it just in his lungs in November and now has it in his liver too.  He has now completed all the tests in order to determine his options of treatment.  Today he was given the following 3 options:

  1) Yervoy, which we were told has about a 20 to 30% response, 10% of patients have long term benefits  -  some side effects can include: colitis,

10%, hepatitis, itchy rash, irritation to liver,severe headaches, low thyroid, and fatigue.
 
  2)Temedor: 12-15% response.  Doc said that it is extremely unlikely that it will cure him.  As it is chemotherapy, some side effects can include nausea and vomiting, risk of infection, loss of appetite, and diaherria.
 
  3)Supportive Care: care to improve the quality of life.
 
My dad already decided that he will go with option 3 - supportive Care.  My dad has had Parkinson's for about 13 years now and I know it is wearing him down as his body has been declining every year.  He can still get around, but his legs have become much weaker and overall strength is much weaker.  He uses a cane and some days his legs just don't cooperate.  He does have good days though where he will walk a half a mile to a mile or so. 
I give this background because I'm thinking about trying to convince him to try the Yervoy, but wondering if I am being too selfish in not considering his fear of all the side effects of Yervoy.  The pharmacist made it sound like the side effects are definitely manageable.  Just wondering if because of his age and Parkinson's is he going to have a much tougher time at the side effects.  Does anyone have any experience of a loved one in this age category that has gone with the Yervoy treatment?
 
Thanks for any input you can provide.
Michelle

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Anonymous's picture
Anonymous
Replies 8
Last reply 1/20/2012 - 8:16pm

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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NYKaren's picture
Replies 2
Last reply 1/20/2012 - 4:25pm
Replies by: NYKaren, DonW

hi,

1) I just discovered what I believe is a new satellite, in my ear canal!   Has anyone else experienced this?

 While we wait for some Anti PD-1 trial that I fit the criteria for, Dr. Halpern is freezing all the mel on my face & I'm applying Aldera at night.  They are very concerned about halting the progression of satellites, but held off on the planned Temodar because the Merk trial only allows 2 prior systemic treatments...Now I don't know if this new development will change that. 

Called Dr. Wolchok about ear today, he said it's a matter for Dr. Halpern.  Dr. H. is out of town--I have app't with him for the 30th.  

My next app't w/Wolchok is Feb. 9.

2)  Dr. H made app't  for me w/one of the surgical derm. docs (right after I see him on the 30th.) to discuss injecting IL-2 into the primary and all the satellites.  I don't know anything about this treatment--the side effects of high dose IL-2 were awful and I wound up not responding.   Anyone know about this, and what the side-effects are?  Can't find anything on internet about it.

Last week I was cautiously optimistic because Wolchok said that if Merck would allow calipers to show measurable disease, i might get into that trial, and also that GSK is supposed to start an anti pd-1 trial without the current ipi arm.  Enough people have done ipi unsuccessfully...i think it's time--it's just more money in their pocket if/when their anti-pd-1 drug gets FDA approval.

Any advice/suggestions welcome.

thanks,

karen

Don't Stop Believing

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Patients on Vemurafenib Need Testing for RAS Mutations
Secondary Cancers a Concern

Nick Mulcahy

January 20, 2012 — Patients with advanced melanoma who are treated with vemurafenib (Zelboraf, Plexxikon/Roche) should be tested for RAS mutations, according to an editorial published in the January 19 issue of the New England Journal of Medicine.

A study that accompanies the editorial reports that RAS mutations frequently occur in secondary skin tumors that develop in vemurafenib-treated patients.

The testing is necessary because there is "potential for secondary tumor development" that arises from treatment with vemurafenib and other BRAF inhibitors, writes Ashani T. Weeraratna, PhD, from the molecular and cellular oncogenesis program at The Wistar Institute in Philadelphia, Pennsylvania, in her editorial.

These secondary skin tumors — namely, cutaneous squamous cell carcinomas and keratoacanthomas — are relatively benign, compared with melanoma, and are no reason to discontinue vemurafenib, said Dr. Weeraratna. However, testing will alert clinicians to which patients have RAS-driven secondary tumors.

The testing is important because patients with RAS mutations could also develop secondary cancers in organs beyond the skin, advised Dr. Weeraratna.

"If patients have RAS mutations they should be monitored closely for any development of cutaneous squamous cell carcinomas in all organs," she told Medscape Medical News.

"Although cutaneous squamous cell carcinomas are not deadly, these lesions can be life-threatening when they occur in other organs," Dr. Weeraratna writes in her editorial.

She discussed other potentially affected organs.

"Squamous cell carcinomas can potentially arise in any organ with a squamous epithelium, essentially a layer of flattened epithelial cells that line the basement membranes of organs. A squamous epithelium is found most often in organs where rapid filtration and diffusion is necessary, such as the alveolar lining of the lungs and the glomerulus (kidney). Thus, squamous cell carcinomas can be found in organs such as the lungs, cervix, and esophagus, and also account for a large proportion of head and neck cancers," Dr. Weeraratna explained.

Importantly, there is no evidence that vemurafenib triggers tumors in other organs. "It is as yet unclear whether the generation of squamous cell carcinomas in these organs, upon BRAF inhibitor therapy, occurs, but these data certainly alert us to that potential risk," she said.

MEK Inhibitors May Help

In this study of melanoma patients, the investigators sought to characterize the molecular mechanism behind the development of secondary skin cancers in patients treated with vemurafenib.

They admit that a skin cancer drug that causes other skin cancers is unexpected.

The development of cutaneous squamous cell carcinomas and keratoacanthomas "is the opposite of what would be expected from a targeted oncogene inhibitor," write the study authors, led by Fei Su, PhD, from Hoffman-La Roche Pharmaceuticals in Nutley, New Jersey.

In their search to understand this toxicity, the investigators analyzed the DNA of a sampling of these tumors and found a high rate of RAS mutations (21 of 35 tumors; 60%).

"Mutations in RAS, particularly HRAS, are frequent in cutaneous squamous cell carcinomas and keratoacanthomas that develop in patients treated with vemurafenib," write the authors.

"This study points out that BRAF inhibitors should only be used in patients who have cancers driven by BRAF mutations, and it raises the concern that cancers driven by RAS mutations (KRAS, HRAS, or NRAS) can be paradoxically activated instead of inhibited with this class of drugs," said coauthor Antoni Ribas, MD, PhD, in email correspondence with Medscape Medical News. He is from the division of hematology–oncology at the UCLA Medical Center in Los Angeles, California.

Why patients treated with vemurafenib have such a high rate of RAS mutations in these secondary cancers is not known.

However, the investigators performed animal-model studies that suggest that the development of RAS-mutation-driven secondary tumors might be prevented with a MEK inhibitor, another class of drugs. There might be "usefulness of combining a BRAF inhibitor with a MEK inhibitor to prevent this toxic effect" of secondary cancers, write the authors.

There has already been clinical investigation of this concept — a phase 2 study of the combination of the MEK inhibitor GSK1120212 and the RAF inhibitor GSK2118436 in metastatic melanoma.

That study, which was presented at the 2011 annual meeting of the American Society of Clinical Oncology, and reported at that time by Medscape Medical News, showed that the toxicity of the combination seemed to be lower than that of either agent used alone.

N Engl J Med. 2012;366: 207-215, 271-273. Abstract, Editorial

Medscape Medical News © 2012 WebMD, LLC
Send comments and news tips to news@medscape.net.

===========================================================

Authors and Disclosures
Journalist
Nick Mulcahy

Nick Mulcahy is a senior journalist for Medscape Medical News and covers oncology. He was a recipient of a journalism fellowship from the National Press Foundation in 2010. Formerly, Nick was a freelance medical news reporter for 15 years. His byline appeared on washingtonpost.com, usnews.com, yahoo.com, and many other Web sites. He previously reported for International Medical News Group (Elsevier), MedPage Today, and HealthDay. Nick is also the former managing editor of breastcancer.org. A graduate of the University of Pennsylvania, Nick is based in Philadelphia. He can be contacted at nmulcahy@medscape.net.

Nick Mulcahy has disclosed no relevant financial relationships.

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

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