6/14 – I’m a ONE!

Dr. J is back from Sweden. I had a chance to speak with him yesterday. He suggested that we do NOT do the allogeneic transplant. He said we need to harvest cells now and prepare for the auto (same cell) transplant in January as we had been planning all along.

His reasoning is that I am in a great response, near complete remission and if we jump straight to an allo transplant and it fails then we are out of other options. My thinking (and I don’t want to put words in his mouth) from speaking to him over the last six months is that he BELIEVES that we are a few years from a CURE. If an auto SCT buys me a few years – who knows what modern science will come up with? DID YOU KNOW – that 7 out of the last 11 Cancer drugs approved by the FDA have been Myeloma drugs? I read that on Twitter yesterday.

As far as the clinical trial option – Dr. J said just get the cells harvested then we will regroup and talk about clinical trials.

And in the “as if that wasn’t the only great thing about yesterday” department …. I found this great article about high risk Myeloma and further classifying and predicting survival rates:

http://myelomacinderella.net/2013/06/new-scoring-system-identifies-mm-patients-high-risk-of-early-death/

So – now – even though I have the 17p deletion all the other risk factors are in my favor. I think this is what I have been saying all along. I score out to be a ONE in this marker. ONEs have a four year survival rate of 73%. I will take that. I will take that especially given the statistics of how survival rates are calculated, who is included in them and why they are skewed to the negative. I wrote about numbers in this post right here:

https://bradstrong.wordpress.com/2013/01/19/119-lies-damned-lies-and-statistics/

If you think about it (and its worth mentioning again) newly diagnosed patients aren’t really counted in overall survival numbers because they haven’t survived LONG ENOUGH to be counted! So – that means that the benefits of all these new novel therapies haven’t really made a full impact to move survival rates out to a more favorable number.

Bottom line – We move forward as planned with the auto SCT – and – I’m a ONE! I’m a ONE and happier than a pig in shit.

Another great day to fight Cancer. Another great day to be #bradstrong!

6/13 – Sweden

Quick update because a lot of people have been asking – I have not spoken to Dr. J yet. I got a call from Dr. S nurse who told me that he was in Sweden at a hematology conference. Dr. J was there as well and they were “discussing” me.

I told her “I hope not! That would mean I am in pretty bad shape if I was the topic of discussion at a hematology conference. They can discuss me for about 5 seconds – then they can move on to more important topics.”

As I always say – everyone’s got shit to deal with. You just hope your shit is not worse than everyone else’s.

I will most likely hear from Dr. J either today or tomorrow – til then –

It’s another GREAT day to fight Cancer. #bradstrong

6/8 – Sticks and Stones

Cancer – Ima mess you up!

6/8 – My Trip to Hackensack

Yesterday I went to Hackensack Medical Center to visit another doctor to discuss the stem cell transplant (SCT) procedure. If you remember, my fabulous insurance company decided that I could not have this done with the doctor I have been seeing for the last six months and told me to “stick it” and go elsewhere.

Let me also say before I get into this post that I promised an honest account of my journey against Cancer. The good, the bad and the ugly. Yesterday was not a great day for me. I learned that I most likely will need to make some choices and none of the options on the menu are very good. As you read this entry, keep in the back of your mind that I KNOW that I will win this battle. I KNOW that Cancer will not beat me and I KNOW that I will be around this great Earth for many years to come.

The reality of this, though, is that this can kill me. That is the realization I came head to head with yesterday. Multiple Myeloma is out to kill me. My own cells are trying to destroy me. They are smart. I just need to be smarter.

I arrived at Hackensack around 7:20, checked in, got my blood work done and was escorted to Dr. Siegel’s office. He is one of the most highly rated and decorated Myeloma specialists and the chief of Myeloma at Hackensack. We talked about how well I have responded to treatment. We talked about how Dr. J was able to get me on Carfilzomib so quickly after the trial. He said he wished he knew how he was able to do that.

** side note ** If you remember, Carfilzomib is only approved for patients who have had one prior treatment and it failed. Dr. J was able to get me to Carfilzomib right away. One of the many advantages of having the right doc.

We continued to discuss results, myeloma markers, new drugs and general transplant procedures when the bomb dropped right in between us. My old friend 17p chromosome deletion decided to wreck our pleasant conversation. The tone of our conversation became much more serious. As I said on Twitter afterwards:

@bradcoustan Just finished with transplant doc at HMC. This Cancer shit got real today!

The deletion of chromosome 17p puts me in the high risk category. Basically it means that I am missing the p53 antigen which regulates the growth of Cancer cells. When Cancer cells develop p53 acts as the judge and jury and tells them to kill themselves. Without p53 they continue to multiply. The chemo does the job of killing the cells but without p53 eventually Myeloma finds a way to beat chemo – to get around the meds – and continue its progress.

Dr. S explained that what this means is that typically the standard protocols will not work – or – they will only work for so long. Standard protocol in Multiple Myeloma is to attack the Cancer with novel agents like we have been. Combinations of therapy like Carfilzomib, Revlimid and steroids like Dex. This will create a remission or a partial remission to the point that a stem cell transplant procedure takes place to clear out any remnants of Cancer and return your own stem cells back into your blood stream and let them regenerate. This should put patients into complete remission. Median remission lasts somewhere between 2-3 years.

** side note ** Remission times are actually much longer with patients that are newly diagnosed. The problem is that statistics can’t account for these patients because they haven’t made enough of an impact in the overall numbers because there aren’t as many newly diagnosed patients in the samples yet. I wrote about this in a previous blog post.

With 17p deletion, patients can expect remission times half of those without 17p deletion – or in my case 1.5-2 years. OUCH!

So – what are the other choices? I just described an autologous SCT. This is where my own cells are used for the transplant. One choice is to have “back to back” SCTs. This tries to confuse the Cancer cells and is part of the therapy used at Sam Walton’s Myeloma center at Arkansas which is one of the more aggressive treatment centers in the country.

Another choice is to have an allogeneic SCT. This is when you get transplanted with stem cells from a matched donor. The idea behind this is – Why put your own stem cells back inside you when we know they don’t have the proper tools to kill the Cancer cells? If we use someone else’s stem cells it is like getting a whole new genetic make up that is prepared to fight the Myeloma battle for you. The problem with allogeneic is the risk. According to Dr. S there is about a 15-20% chance I will die from the transplant itself – either from the procedure, from infection or from the new cells attacking my current make up (not matching) and creating infection.

BY THE WAY, Dr. S recommended allogeneic. He said if it were him – this is what he would do.

Great! So let me recap my choices:

1. Autologous SCT which uses my own cells and provides a great quality of life and a possibly short remission.

2. Allogeneic SCT which uses donor cells and provides the best chance for me to live the longest but the procedure itself could kill me before I even get that chance.

As Dr. S said – Do you want to live a great life and make it to 50 years old or be somewhat compromised and live to be 80?

Throughout my six month (so far) journey NOBODY – NOBODY has been as blunt or straightforward as Dr. Siegel. I am glad. That is the way I operate. I have been asking questions about 17p since I was diagnosed and not sure I have always gotten the straight answer. 17p deletion is BAD SHIT. It can be overcome – I KNOW it can – but it is one bad ass thing to have.

We also spoke about clinical trials that are going on with autologous SCTs in which they are harvesting more cells than they need and injecting them with the necessary antigens before returning them to your body to create a Cancer blocker like p53. I may be eligible for that as well and it may be a good option.

I also have a ton of positive factors in my presentation that weigh the odds in my favor:

1. My CRAB staging – meaning the criteria of Myeloma used for staging is pretty good.
C – Calcium – no calcium in the blood
R – Renal – no kidney issues
A – Anemia – I am not anemic
B – Bones – I have bone lesions but PET-CT shows that they are significantly reduced

2. I am young, strong and in reasonably good shape to fight possible infection

3. BMB – bone marrow biopsy showed that a minority of cells are abnormal

4. Albumin levels of over 4%

These are all good prognosticators that will weigh into our decision.

So – now what? Dr. S and Dr. J will discuss the options and then I will have a have a discussion with Dr. J about my options. As Dr. S said – Dr. J may tell you that I am full of shit or he may agree with me but he’s your doctor.

Quite a day yesterday. QUITE A DAY. Not many good choices. I need to dig deep here and find a SILVER LINING in all of this. What I realized is that maybe I have been too carefree about this stuff. I have so much confidence that I will beat this and live forever that maybe I haven’t been careful enough with my body. Maybe I have been pushing myself too hard. I don’t ever stop fighting but I can’t ever FORGET what is lurking inside me. I can’t ever let my guard down against this.

Today Cancer fought back – but it fought back UNCONVENTIONALLY. It didn’t fight back through the BLOOD. It didn’t fight back through BACK PAIN. It fought back through the WORDS of a doctor. Today Cancer tried to steal my FUTURE MILESTONES through unconventional warfare – and the SILVER LINING is that all that did was STRENGTHEN my resolve to WIN.

6/7 – Numbers and Support Groups

I don’t know if I posted my monthly Myeloma Markers on here from last week but they pretty much stayed where they were.

M Spike is now ZERO for the second straight month indicating no Myeloma in the blood or the urine. This is GREAT news just as it was last month. The one glitch in the numbers is that while my Kappa protein is normal level and my Lambda protein is normal level – the RATIO between the two (they call this the kappa/lambda ratio) is ABOVE NORMAL LEVEL. From what I understand, this indicates there is active Myeloma in my body. These are called “light chain” proteins.

I asked Dr. J about this and his email back to me was this:

1) Great News
2) Ratio not important; light chain values great

OK – so all is well, right? MAYBE? Read on …

Here is why I DON’T like support groups:

When I was about two cycles into this in I was featured on a great website called MM For Dummies:

CLICK HERE FOR #BRADSTRONG ON MM FOR DUMMIES

I met a guy through the comment section named Stan. Stan is also a patient of Dr. J and we met in person at Mt. Sinai and discussed our treatments, our fears and our lives. Stan and I have developed a pretty neat friendship. Stan and I also managed to get added to a Facebook support group as well.

In this support group Stan recently posted that he achieved an SCR. (Stringent Complete Remission) and I was quite excited by this. I commented – “great job” and gave him an update on me – Zero M Spike 2 consecutive months, normal light chains but ratio high, etc.

We got into a conversation about the meaning and I said Dr. J says not to worry – all is well.

At this point one of the self appointed amateur doctors that you find in EVERY support group decides that he is going to play oncologist and tell me how IMPORTANT the kappa/lambda ratio is and that is what is looked at in Myeloma – blah, blah, blah.

Now I am freaking out. This guy has a pretty widely read blog in the MM community. He seems to know what he is talking about. I have read his blog and he has done his homework. I emailed Dr. J:

Dr. J

Everything I have read says that ratio is very important. It jumped quite a bit. Not in normal range. Is this an indication of a possible relapse? I know Kappa is normal but it is as high as it was in February. Does the high ratio mean Myeloma is more active than before?

His response:

No! Not to worry! (again with the exclamation points – his, not mine)

SO – What am I getting at here? The reason I don’t attend support groups is that you can’t control the environment. Too often they become bitchy chat rooms full of know-it-alls and negativity coordinators. I choose to spend my time with supporters who are positive and happy. People that have chosen to confront their disease and live their lives as if …as if they will live for a long time. Even if a long time is a week, a month or a year. People who choose to MAKE THE MOST of it all.

The SILVER LINING here is that environment exists for me. It exists with family, friends, co-workers and clients. It exists on Twitter. It even exists in that very Facebook group. There are plenty of positive people in that group that share positive stories, that inspire others and are legitimately looking to be lifted up. To ALL of you – I support you. To the OTHERS – leave us alone!

Oh … and to the amateur oncologists out there: Shut the fuck up … please … for all of our sake.

I am off to Hackensack to see the transplant doctor this morning. Feeling great. Feeling #bradstrong. it is ANOTHER great day to fight Cancer!

6/4 – Email From Ava to Dr. J

From: Ava Coustan 

Subject: Thank you!

Date: June 4, 2013 7:01:52 AM EDT

To: Sundar Jagannath

Cc: Daddy👨

Hi! I’m Ava Coustan. I’m 8 years old my father is Brad Coustan. He has Multiple Myeloma and you take care of him.
Once, I was at Mount Sinai and I was very excited because I wanted to meet you and thank you, but I didn’t have the chance. I figured, this I my chance.
Thank you! So much! My dad might not of been living if it wasn’t for you.
Also, many people are the same way.

Thanks!!!! So much!!!!
💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋💖💋
I mean a lot. Like a lot a lot and I don’t say that to many people.
Again, Thanks!!! I don’t know how many times I need to say it until you understand.
Love,
Ava Coustan💋❤👧
(Brad’s Daughter)💋❤👨

6/1 – 6 Months

Today is my six month Cancerversary. Six months ago today I was diagnosed with Multiple Myeloma, a plasma cell cancer that eats at the bones. An INCURABLE but MANAGEABLE Cancer that has given me perspective, turned me towards people and things that are most important to me and has proven that with the right ATTITUDE, and a true SUPPORT NETWORK – ANYTHING is possible.

The late coach Jim Valvano once said “Every day ORDINARY men achieve EXTRAORDINARY things.” I am an ordinary man driven by Cancer to achieve the extraordinary.

On my six month Cancerversary I looked back. This was the email I sent my friends on the way back from Dr. J’s office for the first time:

“Guys -

Want to share some recent news with you all. Some of your wives may already know but I have been diagnosed with suspicions of a form of blood cancer called Multiple Myeloma.

I am on my way back from Mt Sinai now after meeting with the very best doctor in the country for this particular ailment. We will not have an official “diagnosis” until the results of a biopsy are back but we are fairly certain what the result will be.

The course of treatment will be Chemo, bone marrow transplant, and then more meds. I will probably start next week or week after.

All indications are that the prognosis is good and that I will lead a long life but as you know these types of things can throw a curve ball or two so I am cautiously optimistic. If you read anything about this cancer you will find that the survival rates are low but there has been huge advances in this area since most of that stuff was written.

I am only sending this out to you all in email form because I can’t pick which one of you I like best to call first. I love you all the same.

I have three requests:

1. Don’t use the C word (cancer) when talking about this with others. My kids know I am sick but I don’t want them to dwell on what it is.

2. If you see me – give me a hug. I could use a lot of hugs right now.

3. For those in my fantasy football league know that I will beat you all so badly this year and come back even stronger to defend my crown next year.

Count your blessings. I am blessed to have friends like you all.

I will beat this.”

That was the second time I cried. I couldn’t get through writing that email without crying a few times. The first time I cried was when I found out from the doctor a few days earlier. And then there were two other times – one when I couldn’t button my top button on my dress shirt because the bloating was so bad from the chemo and the other when I sneezed in Philadelphia and wrenched my back.

And although I cried when I wrote it – they weren’t necessarily tears of pity. I knew that my friends had my back (and boy do they ever) and that made me feel so great. Tears of pity mixed in with tears of joy because one man should not be so fortunate to have friends like this.

The men I wrote this email to have come to treatments with me on Fridays and Saturdays. They have sat in the treatment center and watched and waited as nurses poked and prodded me with needles and sometimes shots. The Mt. Sinai staff affectionately calls them my POSSE. These men have cooked for me, watched my kids for me, stepped in and coached for me. They have regularly called me, emailed me and texted me. They READ this blog. They SHARE this blog. Heck – I think one of them even bought the publishing rights for when I am gone. I see them wearing their #bradstrong bracelets all over town among with many others who continue to keep me (us) in their prayers.

With friends like mine, you feel as if there are no enemies in your life. And I am sure I have more than a few (Craig Carton not included) – My friends make me feel protected from Cancer. They make me feel safe, they comfort my family and they silently challenge me every day to be more like them. To be more caring, compassionate and thoughtful in my every day actions. They challenge and inspire me to be regular. To participate (actively) in our lives together – whether it’s fantasy baseball, fantasy football (which by the way I will crush you all this fall), swimming at our house or milestones like Bar and Bat Mitzvahs coming up. I want to share all of the upcoming milestones with you, your families and the rest of our great POSSE. As the song goes … “You make me feel so young…”

I made you all a promise at the end of that email. I promised you that “I WILL BEAT THIS”. and I will. I don’t know for how long …. But I am beating it every day. Six months in. Look at the tables. Average/Median survival for Multiple Myeloma is 5-7 years. I am 1/12th to 1/14th of the way there. High Risk Multiple Myeloma average/median survival is 2-3 years. I am 1/4 to 1/6 toward the average end of my life.

So – EVERY SINGLE DAY is to be celebrated. EVERY SINGLE DAY counts. EVERY SINGLE DAY is an opportunity to live the day after it – in health, in happiness and in MEANINGFUL FRIENDSHIP. I don’t give a flying fuck about 5-7 years or 2-3 years or whatever the MEDIAN is. I made a PROMISE to all of you. “I WILL BEAT THIS.”. It’s that simple really. Averages and medians are for wusses. I am an OVERACHIEVER!

As my great cuz @court_mannCHI says: “Circumstances don’t define you, they REVEAL you.” Aint that the truth!

Yesterday I had treatment – DEX (Steroid as if you couldn’t tell from this entry), Carfilzomib and Zometa the bone strentghener. I came home, took my boy Victor to the ball field and hit him 120 ground balls. You don’t get many second chances in life – or in the infield for that matter. We came home, swam together, played pool basketball and stopped every once in awhile for a hug break. Even Helene came in the pool last night. Those are my favorite nights.

Every day that goes by I live as if its my last with every expectation I will have another one tomorrow. I do every damn thing I can to keep that promise. “I WILL BEAT THIS”

FRIENDS:
Off to Mount Sinai – last day of cycle 6. Going to fight some Cancer today. Then the bye week. I LOVE the bye week. Drive home safely – BEEP, BEEP!

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