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.

12 responses to “6/8 – My Trip to Hackensack

  1. Brad – I feel a mix of emotions in getting your posts – happy to have one of your updates, amazed at your ability to articulate the full range of emotions of what you are going through yet also sharing the roller coaster of emotions that you, Helene and your family are experiencing. Like Eben, you inspire me. Your closing paragraph today blew me away. May you blow this cancer away and banish to the netherlands of your life. Sending lots of positive energy and love from the DC Block Family.

  2. You will win. No doubt about it. It can be a roller coaster, but that just makes us stronger! Matt

  3. Brad, Obviously I am not an MM specialist. You probably know as much as I do about it at this point and I applaud your keen sense of thirst for knowledge about what you are fighting. Education is power.

    What I can tell you is that I have always recommended the far more aggressive and novel approach in any person that can tolerate a treatment option.

    You’re young healthy body and strong will Will definitely prevail over any toxic side effects.

    We are all different……but If I put myself in this position, I would rather sit and wonder in the future whether I would have been equally served by a less aggressive treatment with fewer side effects than wonder if i would have tolerated the side effects of a more aggressive therapy

    Marc Plawker

  4. Dear Brad, You are probably the most courageous person I know. Am sure that writing about it is a catharsis, but your bravery flies off the page. Keep it up and we all will continue fighting along with you with good wishes, prayer and happy thoughts.

    Love, Aunt Roberta

  5. Brad, You have a huge cheering section that prays for you. This can be added to the stem cells for good results. With love, Uncle Herb

  6. Hi Brad,
    These are tough decisions. You have lots working in your favor, and Dr. Siegal is one of them. He is one of the best MM experts in the country. I, too, have 17p and it can be a bummer reading about how it shortens survival relative to those without it.

    I have sustained control for a year now with 17p and a few other of bad uglies in my profile.
    But given that you are young & healthy your odds of great outcomes are really great.

    Wishing you & your family
    all the best

    P.S. How do you post a ping back? 🙂

  7. Im sorry you are in this situation, but I am a patient of Siegal’s as well and his team is awesome. Same goes for Dr Vesole and Donato. Ive had two auto scts in 2010 and 2011 and Im gearing up for an allo next yr. I think we are both somewhat local, so if you have questions or want to just shoot the shit, I can be reached at chrismolinaro@yahoo.com

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