Stem Cell City

Lisa Ray, a stunning actress that was diagnosed with MM, fights for stem cell awareness and research! For more information on Stem Cell City, go HERE

Happy Anniversary

Wow, it's been a while since i've updated this blog! I must say, i've done an absolutely deplorable job of updating it - and for that, I apologize. Right now, i'm sitting in Kelowna, British Columbia, visiting my cousins and having just returned from a week long trip in Vancouver with my family. Aside from eating like it was nobody's business and laughing as if no one could hear us (boy, were we wrong), my family and I have just been enjoying life. Today also marks the one year anniversary of my mom's transplant - a significant date that has left us sitting back, pondering, and appreciating every breath we take in. It's hard to believe that an entire year has already passed, how many things have occurred since one of the most terrifying, and important, days of our lives. Since that day, so much has happened in our lives. It's almost as if we're completely different people than the fragile, yet indestructable, ones a year ago today. Older, wiser - aware. But not so cautious that life's joys cannot be enjoyed nor appreciated. Looking back and looking at my mother, I feel an overwhelming mixture of emotions. Pride, because I am so proud of how incredibly far my mother has come. Sad, because she had to go through, and still experiences, cancer. Awe, because of the sheer amount of strength and resilience she has shown. And most of all, happiness, that we all have each other, that we are so much stronger and closer than we have ever been.

Though my mother is not yet in remission, she still remains in a consistent and steady decline with her numbers (M-Spike, Freelites) that have left us feeling satisfied and content. As far as we are concerned, as long as the numbers aren't going up, there's no need to fix something that isn't technically broken. In the mean time, she remains on a very low, maintenance dose of Revlimid and regular check ups. While the word "cancer" is always on our minds, it remains so at a distance, allowing us to take pleasure of the simple joys in life. Since then, I have also managed to successfully complete an editorial internship at a men's fashion and lifestyle magazine out in Toronto, called SHARP, that has, quite honestly, changed my life as well. Fashion is something that I am passionate about, and this internship provided me with an invaluable amount of experience and insight that has only fueled my drive even more. You can check out some of my work over at my other blog, the Fashion Relic! In addition, i'm just about to finish up my last semester in school where i'll be obtaining my commerce degree. So, as you can see, a lot of excitement and new beginnings!

Remembering this date led me back to this blogging account, and to my great surprise, showed me that many of you were still coming back and reading my previous posts! Thank you so much, and I can only hope that some of my previous posts were able to help any of you in one way or another. Remember, you are never alone. Your support has inspired me to continue writing from this account, so be sure to check back soon for some updates (especially one involving the magazine's September issue!)

Love and Light,

Lance

The World of MM

I'm in the middle of my marketing class right now. Clearly, I am paying attention.

Here are some links to news and updates in the Myeloma world. I'll explain them in further detail when I get home!

Carflizomib gets fast-track designation from FDA for treatment of refractory/relapsed Multiple Myeloma patients. Yay! Click HERE

Revlimid Maintenance and Secondary Cancers - More details emerge. BOOO! Click HERE

Why should you take Dex(amethasone) with food? Click HERE

PHASE 2!!!!!!!!

HOLLAAAA!

Ok, so we know it's been a while and we kept on saying to "get ready" for Lord knows how long, but we're *SO* excited to announce that M.A.M.is.BACK! and with a vengeance! After an incredibly successful awareness and fundraising campaign (that has received press coverage from front-page news to PEREZ HILTON), we're officially launching PHASE II of our campaign with a pair of tickets to LADY GAGA's concert in SALT LAKE CITY, UTAH! Whoever can raise the most money for charity (100% goes to the Multiple Myeloma Research Foundation) wins the tickets! It's that simple!

The World of MM

Ok, so I FINALLY figured out how to find all the e-mails I flagged on my phone, which I had meant to relay onto the blog. They're all basically messages that I thought would be of interest and importance in the Myeloma community.


1. First off, Mike Katz, the moderator of the ACOR ListServ, messaged all the members not too long ago on the issue of myeloma stem cells. It's a very hot and heated issue in the MM world, as there are many on both sides of the fence in this argument. Basically, what this is referring to is the debate that there exists stem cells with a myeloma blueprint, allowing it to "resurface" or relapse following a transplant or chemotherapy. The argument goes on to state that we're basically hitting the bulls-eye on the wrong target. Yes, these drugs may be very effective against current existing myeloma cells in some people, but instead, our focus should be on developing treatments to cut off the myeloma at its root, in the stem cells, to prevent myeloma cells from ever coming back. The trick is HOW we'd be able to discriminate between normal, healthy stem cells and myeloma stem cells, and ensure that these two would be clearly and concisely separated from each other. It's a very important issue, as stem cells are not an unlimited resource for patients. From what I have read and seen, most patients will be able to harvest enough stem-cells for about two transplants. So. When and how to utilize these stem cells is a critical matter, and literally, makes the difference between life and death. I'm all for the research. Not that I am anywhere CLOSE to being a scientist by any means, but the theory behind all this seems to make sense. It's uncharted territory. Who knows, maybe this'll be the holy grail of what the Myeloma community finally needs to find a cure? So, provided are two videos from the IMF (International Myeloma Foundation) on the matter.


LINK
2. A fellow ListServ member posted this a while ago (Nancy!) The National Comprehensive Cancer Network (NCCN) posted their guidelines on for patients on treatment strategies for Multiple Myeloma. From the looks of it, it looks pretty comprehensive. But, a very resourceful tool for patients to use. You can find the site HERE. NOW. With all that being said, I just want to reiterate something that I believe is very important for patients, especially new ones, to know. When you're first diagnosed, often times the first question you'll ask is in regards to the prognosis, how long you have to live. Well, i'm sure some have their reasons for doing so, and I respect that. But in my opinion, I think it's a huge waste of time and energy. The thing is, with the extremely rapid pace that science is moving, any statistics on prognostics are constantly becoming outdated because of how fast research is going. So don't listen to any of it. Nothing good comes out of it. And honestly, do you REALLY want to know? It's a GINORMOUS ball of stress and pressure to live each and every single day out of however many years you may or may not have left to the fullest. Prognostics are bad news bears, in my opinion. 


3. I can't offer too much advice on this matter because my Dad is the one that handles all the finances of this stuff. But you don't have to be affected by cancer to know that financing treatment on your own, without any assistance whatsoever, is not an option. A ListServ member (Dianne!) mentioned a website that I think many will be able to utilize. Laurie Todd is a cancer survivor and has a site titled "The Insurance Warrior" that deals with a lot of insurance issues and money matters. Take a look. 


4. Lastly, it's been reported (again, thanks Dianne!) that Bortezomib (Velcade) can cause severe irreversibe bilateral hearing loss. I haven't had the chance to read it over just yet, but the link is HERE if you would like to check it out. 


That's all i've got for now!
Hope it helps


L

Oh Happy Day!

Well, it's probably time for an update on Mama Bear and LIFE! How sweet it is :) Before I begin, i'll apologize in advance if my grammar and/or sanity get lost in translation. The repairmen came to fix a bunch of things in the apartment, so you know what THAT means! Yep, i've been inhaling the wonderful fragrances of GLUE, DRYWALL, and PAINT for the last 5-6 hours. joy. 
Anyway...
Mama Bear had her check up with the good doctor on Tuesday to see if we would need to go through with another transplant. Fuck. The days leading up to the appointment were filled with absolute DREAD as I had been almost 100% sure that she would have to go in (which would have been the following Thursday aka TWO.DAYS.LATER). Over the break, I had the chance to go back to the Tom Baker Cancer Centre for one of her chemo sessions and was able to look over her blood work. Her CBCs were pretty stable, but her Total Protein, which is a mix of both good protein and BAD protein (aka Myeloma protein), had gone up a little. Based on our history, rises in the total protein have never been because of the good protein going up. Aside from that, her Beta-2-Microglobulin levels had also gone up a little as well... Recent discussions on the ListServ on this matter have informed me that it is a new prognostic measure for myeloma patients. In other words, you do not want this number going up. Of course, I didn't tell her any of this because I didn't want her to worry. But all these things combined led me to believe that a transplant would definitely happen. Needless to say, it wouldn't have been a very good start to the new year. But, to my surprise, my mom answered the phone with sunshine in her voice, saying that her m-spike (myeloma protein) had actually gone DOWN from 13 to 11. Granted, it's not a lot, but any decrease is a step in the right direction, yes? That was a SHOCK. Our doctor had also said that her FreeLite Chain things (i'm still unsure about what these are exactly, so i'll have to research it a bit more) went down a lot. Apparently, it is a better indicator of where you're at than the m-spike? This, i'm not too convinced. I'm a little skeptical. Why had we never looked at these numbers in all the appointments before???? So, it's still something that requires a little more investigation on my part. But I do trust our doctor. He's a very good man, I just don't understand what's really happening and need to gain a little more information/control on my part. Anyway, he recommended, instead of a transplant, adding on another drug, Revlimid, to her current regimen. That brings the total to a chemo cocktail of 4 different drugs: Dexamethasone (Dex), Revlimid, Bortezomib (Velcade), and Cyclophosphamide (Cytoxan). Technically, Dex is a steroid, but whatever. A drug is a drug. I'm not the most elated with adding another drug to her regimen, as the body can only handle so much. And with the recent findings that Revlimid can cause secondary cancers, well... yeah. But I suppose it's better than the alternative, yes? I'm pretty sure another transplant is due down the road, but right now is probably one of the worst times to do one. Flus, slippery ice, cold weather, etc. do NOT make for an easy recovery. Regardless though, I'm extremely grateful that that day was filled with good news, more so that my mom didn't have to receive any bad news. I could tell BOTH my parents were relieved. It's funny though. The night before, I prayed, like any other night. But instead I decided to ask just that the appointment would go well. Just one thing, not a whole list of things like my overall family's health, happiness, etc. One precise, specific thing. And it's like God, or someone, heard my prayers. So since then i've just been sending up prayers of gratitude and thanks. Aside from the obvious, I have nothing to ask for right now and plenty to be thankful for. I can tell we're all growing a little weary of this, but anytime you receive good news, it   fuels the fires that push you forward. A dear friend of ours, whom we met during this whole ordeal, recently came thisclose to dying. From what I was told, his numbers came back so high they asked the technicians if there was a mistake, perhaps in a decimal placement or something. But nope, they were the real numbers. This was all in the post-transplant recovery in the hospital, so you can imagine just how discouraging that would have been. This is hard for me to write because it could happen to anyone affected with cancer, but it was suggested that they call family members to say their good-byes. That...is just heartbreaking. But. One morning, the numbers came back and...THEYWEREZERO!!! Miracles happen, my friends. Keep the faith and never give up. 


So that pretty much brings you up to speed on where the family is at. In other news, I'm just about to start the Phase II of my fundraiser and awareness campaign "Monsters Against Myeloma". If you've been following the blog, you'll probably know what it is :) Someone had heard about our cause and very graciously donated their own tickets to Lady Gaga's concert in Salt Lake City in March. So i'm supersupersuper excited (and supersupersuper busy) to get this thing up and running ASAP, hopefully by the start/middle of next week! I plan on contacting the media within a couple days to get the word out. So if any of you, my beloved readers, know anyone in the Salt Lake City area wanting to go to a Lady Gaga concert (c'monnn, who WOULDN'T?!), please let them know about our event! I realize fundraising can seem a bit daunting sometimes, but our last winner from the summer won two tickets with $250 dollars raised (most of our donations have come from those just wanting to support the cause). It's a lot of money, but also very do-able! So we've got that in the works. I also am in the midst of applying for any sort of volunteer position at the Edmonton Cross Cancer Institute, just to show my gratitude. Over the course of my mom's treatment, the volunteers and nurses really were the unsung heroes. I cannot even begin to tell you how much these men and women do, how much love and care pours out of them. While doctors are amazing, these people are truly the faces of care and treatment and are severely underrated in our society. So I really want to try and give back to the community to show my gratitude and help others who are going through what I went through just over a year ago. If any of you, my readers, have not been directly affected by cancer, I would highly recommend volunteering at a local cancer center. Yes, it will be very uncomfortable at first. I remember the first day we went in for treatment. Dear lord, that was horrible and very unsettling. But you get used to it, as with all things, and have the opportunity (because it really is an opportunity) to meet the most amazing and courageous people, and have your lives changed. Forever. 
Either than that, school is keeping me on the hustle as usual, studying lecture notes (yeah, right), looking for internships, and getting involved. BUSYBUSYBUSY! 


Hope all is well with you, my readers.
Sending good vibes into the universe and you.

L

Bones

The FDA has released a new warning against osteoporosis drugs, stating that many of them cause thigh bone fractures. 
According to NaturalNews, the FDA has issued a new warning for *ALL* drugs in the bisphosphonate family, including Merck's Fosamax (marketed generically as alendronate), Roche's Boniva, Novartis' Reclast and Warner Chilcott's Actonel. Why does this apply to us? If you're like my mom, then you go for bisphosphonate treatments once a month, be it Pamidronate (Aredia) or Zometa.  In a nutshell, there are two types of cells that maintain the metabolism (wearing down and growth) of our bones. Osteoclasts break down the bones and Osteoblasts build them up. In normal, healthy individuals, both are necessary and essential. However, in individuals with Multiple Myeloma, osteoclast activity is greater than that of osteoblasts, meaning that the bone is wearing down at a faster rate than it is building up. From what I know, these bisphosphonates prevent or slow down osteoclast activity, but do nothing for osteoblasts. This is all great and dandy, but when taken over time, it can cause bones to become brittle and rigid, increasing the likelihood of fractures. This is because osteoblast activity is already limited/hindered, and thus, no new bone cells are formed (instead, old ones remain). 


Back to the article...
The FDA is also requiring that consumer-friendly guides be distributed with every bisphosphonate prescription to make sure that risks are understood by those taking the drugs, and how to minimize them. Thigh fractures are a common occurrence amongst those taking bisphosphonates and come with little or no preceding trauma. They may also be followed by months of a dull, aching pain in the thigh or groin area. 
The FDA has also directed doctors to reassess whether patients should continue taking the drugs after five or more years, as they appear to offer little or no benefit after this time (but, with an increasing rate of fractures), according to Felicia Cosman of the National Osteoporosis Foundation. 
You can read the entire article HERE

Super

Ok. I SERIOUSLY have to change my sleeping patterns here. Constant late nights have tricked my body into thinking 4am is my regular bedtime. It is now 5:55 am... CURSES!

Thought writing a blog post would exhaust whatever remaining reserves I have in my brain to let me sleep. Have you ever wondered what you would choose if you were given the choice of a super power? Or perhaps 3 wishes from a genie? Or do I really have that much time on my hands... (Don't judge)

The question pops into my head at random intervals throughout the year. Random, of course, meaning monday afternoons in the middle of an economics lectures (I despise Mondays...). But what would you choose? Perhaps time travel or super-human strength? Invisibility (youuuu pervert) or regenerative powers? Up until diagnosis, I definitely would have said time control. That would have meant no more all-nighters and cramming. But then again, those powers would be in direct conflict with my already existing ones of procrastination. It would bring a wholllle new meaning to "last minute", you don't even KNOW! But now, I think the greatest gift one could receive would be the ability to heal all illnesses. That would be absolutely beautiful. Just think about the sheer number of people's lives you could change! No longer would people have to fear the inability to see their child's graduation, or the fear of not having a parent there at your wedding or see their grandkids grow up. Agh, a man can dream... Of course, then BigPharma probably hire someone to lock you away forever and ever (just kidding.........). But can you imagine? You'd be able to heal people left, right, and center! People would think you'd be the next savior, and then you'd have a REAL interesting situation on your hands! (Can you tell how many times i've thought this one over?)

Dream a little dream...

2011

Dear 2010...
Don't let the door hit your nasty ass on the way out. 2011, can I buy you a drink?

Happy New Years everyone! Here's to a fresh new year full of love, light, health, hope, and happiness!

L
Sent from my BlackBerry device on the Rogers Wireless Network

Anniversary

"If there were ever a time that I needed a prayer to be heard, now would be it. Mom has cancer."

Immortal words I wrote down when my mother was discharged from the hospital exactly one year ago. It started out two days earlier as a sore throat and, somehow, ended up with cancer. It's absolutely incredible how much can happen in a single year. Your life can change in the blink of an eye. YOU can change. The experiences we have experienced in this last year can be described as nothing short of phenomenal, in both good ways and bad. We've been presented with a very... Hard reality. I don't want to say unfortunate, although in many ways it is, because it implies an unhappy ending to me. But to say this past year has been a struggle would be an understatement. However, a lot of good has come out of our situation as well. Its almost like Pandora's box, where all the evils of the world flew out once opened. But despite all the darkness and malice in the world, there's still a little light, hope. And no matter how big or small that light is, it is enough to be seen in a world of darkness. With hope we gathered strength, and with strength we built resilience and fortitude. Like a bricklayer, we built ourselves up, slowly but surely. This year has taught me many lessons in strength and perseverance, in appreciation and gratitude, and has given a depth to my perception of the world I never knew possible. Though it has been a difficult year, a number of unlikely blessings have revealed themselves, and I am extremely grateful for them. While it would be quite a stretch to say that these experiences have been blessings in disguise, there has been much good that has risen from our ordeal. The end of the year is a time for reflection for many, and this year is no exception. In fact, these last few weeks are more like a reflection of reflections amassed over time, an incredible sum of lessons learned and trials tribulated. And now, here we are. We've come full circle, back to the day where it all started. But the world is not the same, nor are we. As the world turns, life goes on and regardless of what happens, you gotta keep up. You gotta pick them legs up and move, because the world doesn't wait for anyone, and you end up getting left behind in the dust. Although I am only in my early twenties, I feel like an old soul. As traumatic as the last year has been (especially the first 4 months), I have learned more in one year than I have in 21. It's hard to put these experiences into perspective. People just don't understand, unless they, too, have been impacted by the claws of cancer. On one hand, you wish they could understand the depth and magnitude of your pain. But on the other, this is an experience that you would not wish on even your worst of enemies. It's a twisted reality, it is. Everything about cancer is twisted. You get jaded real fast on certain aspects and develop a deep respect and appreciation for others. Why is it when you are threatened with death that life seems so much more beautiful? It's like some sort of sick joke being played. There is still residual trauma that lingers inside from those first few months. Physically, I may have recovered. But mentally, still shell-shocked. Not a day has gone by where I do not think about the mortality of my mother. It is now a dark cursed cloud that follows me everywhere I go. Some days are only slightly overcast, while others, thundershowers. And I know my mother feels the same. I can still see the pain in her eyes, hear the sorrow in her voice. She's pretty good at covering it up, but this son knows his mother well. Overall though, I would have to say that we are all in much better places. Cancer has forced us to make certain lifestyle changes, both physically and mentally, which would benefit anyone regardless of the circumstances. We're completely different people now. You'll have to excuse me if this post seems a bit drawn out, i'm just writing down these words as they come to me.

In the past year, we've faced and overcome a cancer diagnosis, been on several different chemotherapy regimens, started a fundraiser that received world-wide attention, gone through an autologous stem-cell transplant, completely changed our lifestyles in the way we eat, exercise, and think, and so much more. We've come...a very long way, and we still have a long ways to go. But, if we've come this far, we can do anything. Currently, mama bear is on a mix of Velcade, Cyclophosphamide, and Dex to bring the numbers down a little more. We're hovering and debating the addition of Revlimid to her current regimen or the possibility of another transplant. With the news that Revlimid may cause secondary cancers, i'm a little hesitant to have her go on it again. Then again, what kind of chemotherapy doesn't have the risk of secondary cancers? That stuff is poison and meant to shock the system. On the other hand, the very thought of another transplant is exhausting and daunting. Due to overbooked hospitals, I'm pretty sure we've passed the time period that would consider this second one a tandem transplant (and thus, the possibility of higher effectiveness), so i'm a little reluctant to go down that route as well... It's not like these stem cells are an unlimited resource. We've got enough for one, MAYBE two, more transplants. So we have to be smart with our choices. As usual, we must face some tough decisions... In other news, i'm gearing up to start the second half of my fundraiser, Monsters Against Myeloma, so stay tuned for more information. I'm also planning to use this site as a resource for new updates and news in the MM world. Definitely lots of work ahead of us, but it's all stuff that will hopefully help us move forward :)

I'm thankful for what 2010 has taught us, but i'm ready for it to be over. I'm hoping with everything that I have that 2011 brings health and happiness to my loved ones. I've come to realize that the important things in life are the simple things. Now, with everything in my life put into perspective, things seem much more clear. All I could ask for in this life is for my loved ones to be happy, healthy, safe, and strong. Cheers to a (soon-to-be) New Year my friends.