LongLifeNoodles

I recently wrote that I am officially in “complete remission” after 12 months of treatment- 5 rounds of induction chemotherapy (velcade-dexamethasone-doxil), VD-PACE, and two high-dose melphalan autologous stem cell transplants. As I wrote here, I have been given conflicting advice from my doctors about whether or not to go on maintenance therapy to extend the durability of remission: my UCSF hematologist/ oncologist/ transplant doctor wants me to go on revlimid as a minimum (and has proposed velcade and dexamethasone as well, per the UAMS Total Therapy III protocols); my Stanford hematologist/ oncologist proposes no treatment with close monitoring until relapse. As there is no established standard-of-care for maintenance post-autologous stem cell transplant, both their positions are valid. The former suggests that there is evidence that revlimid extends remission (but may not extend event-free survival) and says that if it were him, he’s take revlimid (that’s pretty compelling); the latter says there is no hard data that supports the proposition that revlimid extends remission, that the use of revlimid may cause side-effects (the most significant of which are thrombosis and peripheral neuropathy), that the disease will become refractory to revlimid if used for maintenance thus eliminating revlimid as a potential therapy post relapse, and that the disease can be effectively managed through monthly serum free light chain assays and semi-annual bone marrow biopsies (I write about my last biopsy here).

While I am still considering the alternatives- with the objective of balancing my quality of life with prolonging remission- I am swayed by recent news on the efficacy of revlimid. On December 18,2009, Celgene, the manufacturer of revlimid, announced that the National Cancer Institute reported initial data from a Phase III, randomized, double-blind, multi-center clinical study led by the Cancer and Leukemia Group B (CALGB) that evaluated revlimid compared to a placebo in Multiple Myeloma patients post autologous stem cell transplant. The trial met its primary endpoint of a statistically significant improvement in time to disease progression, showing that patients on the drug had a 58% reduction in the risk of disease progression compared with the control group. The news was covered by the Wall Street Journal here because it may be a significant development for Celgene’s stock. Celgene will release further details of the results in a peer-reviewed setting in 2010.

So, last week I went through the registration process with Celgene and filled my prescription. My health insurance approved the prescription (that’s a good sign) and I’m now in possession of my first month’s supply of revlimid- with a retail cost of $7,500 (more the the subject of cost of treatment later). My current thinking is that I will start taking 10 mg daily (it is taken for 21-days each month), closely monitor the side-effects, and await further data from Celgene’s study. I’ll let you all know how it goes.

One year ago today- on December 22, 2008- I was diagnosed with Multiple Myeloma. It has been a crazy year, full of physical and emotional ups and downs- the most challenging year of my life. After 5 rounds of induction chemotherapy (velcade-dexamethasone-doxil), VD-PACE, and two high-dose melphalan autologous stem cell transplants, I am so thankful to now be in complete remission. Given that my bone marrow was 80% myeloma cells one year ago, I feel extraordinarily fortunate.

I’ve learned a lot over the last year. I often reflect on those learnings.

1. I learned that the human body is amazingly resilient- I’ve been beaten up for a solid year, and I feel great!
2. I learned what it was like not to be able to get out of bed and go days and weeks and months without feeling quite right- and it makes feeling well so sweet.
3. I learned that there are many wonderful people suffering from terrible, debilitating diseases and that we need to continue to support the medical institutions, researchers and pharmaceutical companies that develop new treatments and make sure that the financial incentives remain aligned to enable innovation.
4. I learned that some people freak out when they find out that you have cancer. Some friends stick around and are comfortable enough to go through it with you. Other friends can’t face it because sickness is unnerving and ugly and threatening- evoking their own fears of mortality. I’ve learned to embrace and be thankful for those friends who were there and forgive those who were not.
5. I learned to accept the generous help of friends, neighbors and strangers, realizing that helping us meant as much to them as it meant to us.
6. I learned how it feels to be different, stared at, and whispered about, sticking out among healthy people.
7. I learned what it’s like to not be able to explain something to your children because you can’t hold back the tears, can’t find the words, and are riddled with fear. I know what it is like to cry in the arms of my 7 year old daughter, needing that moment but feeling so guilty for being so raw.
8. I learned what it is like to be an observer, sidelined by something completely out of my control. I also learned the joy of jumping back in, with both feet. Participating in life is so much more fun than watching it.
9. I learned to be patient as people say “you look great” or “your hair is coming back nicely…” (what’s the emphasis on the hair?)
10. I learned that we are all responsible for our own healing- we need to understand our illnesses, know our treatment options, and direct our own care. When you are sick, knowledge is power.
11. I learned the power of sharing my experiences with others- in the hospital, at the infusion center, at support group meetings, through this blog, on the phone with other patients. We are not alone and there is great satisfaction in communicating with others who are learning their own lessons.
12. I learned that it is through life’s big challenges that we get perspective. My previous life- centered on work and accomplishments- was way out of balance. I am thankful that this experience has allowed me to reset my priorities.
13. I learned that the greatest heroes are our caregivers- those that hold things together as everything else falls apart (thanks, M).

Most of all, I learned how to be hopeful and positive in the face of incredible adversity- when everything I knew to be true was tuned upside-down- and then to embrace life as it was given back to me one little piece at a time. For all of you that are going through it, my hope for you is that you will be healthy again and that the experience somehow enriches your life.

So, I received the official news from my transplant doctor at UCSF yesterday: I am in “complete remission” based on my last bone marrow biopsy. This means that there is no detectable monoclonal protein and the number of plasma cells in the bone marrow is normal (less than 5%). Wow. Good news! This is just the result that I hoped for after a year of seemingly endless chemotherapy and two stem cell transplants. I feel very fortunate and thankful for the care that I have received and the support of my family and friends. I’m also thankful for the opportunity to contribute to the MM community through this blog and my interactions with other patients, caregivers and medical professionals. Most of all, I’m thankful for the opportunity to live my life again and not be a cancer patient- for some unknown period of time until I relapse. What I am celebrating is not cure- because there is no cure; but, the chance to live again without losing the perspective I have gained as part of this experience. I’m setting out to make all that I can of every minute of relatively good health. I write a lot more about “re-entry” or getting “back to living” in my previous post.

So, now what? Well, in terms of the disease, I plan to stay as healthy as I can through good eating and exercise and monitor the myeloma through monthly serum free light chain assays (to monitor the level of kappa light chains in my blood) and semi-annual bone marrow biopsies.

But, I am in a quandary around maintenance: my UCSF transplant doctor is suggesting Revlimid for maintenance- one 10 mg pill a day; while my Stanford hematologist/ oncologist is suggesting no treatment until relapse. Both are multiple myeloma specialists and I trust both of them. The pro-maintenance argument is that the Revlimid is likely to extend the durability (or term) of remission. It is also easy to tolerate and should have no side-effects that impact my quality of life. My UCSF transplant doctor says that if it were him, he’d take the Revlimid. That’s pretty powerful. My Stanford doctor says that more is not necessarily better- I should wait until relapse before I do anything else. He says- correctly- that there is no data that supports the idea that Revlimid, or any other maintenance therapy post-transplant, extends the durability of remission. He describes this as “unknown territory” and suggests that I join a trial. I am, of course, smitten by the idea of taking nothing- almost like I’m not sick. But, as my UCSF doctor reminded me yesterday, “it’s still there and will come back.” So, I’ll ask you: what should I do?

[UPDATE: I found this video of Dr. Brian Durie of Cedar Sinai (and creator of the Durie-Salmon staging system) @ this year's ASH and, according to him, there may be evidence that use of Revlimid on an ongoing basis may be highly effective in controlling/ managing myeloma. He refers to the three-arm MM015 trial. I'll post more on this later.]

I have looked forward to writing this post for a long time and I consider myself very fortunate to be in the position to write it. I hope that my fellow Multiple Myeloma sufferers have the same opportunity. Frankly, when I got diagnosed with Multiple Myeloma in December 2008, I could not have imagined writing this post. I was diagnosed with 80% plasma cells in my bone marrow with Stage 3 disease, could hardly move because of the pathological fracture in my spine, and my first oncologist/ hematologist told me that “this is not a good cancer to get” (is there a “good” cancer?). When I pressed him for a prognosis, he told me to put my faith in God and leave the treatment to him. While I have trouble remembering all of my emotions in the days that followed my diagnosis, I was angry, terrified, confused and hopeless: angry because I didn’t think I “deserved” to have an incurable cancer; terrified of what my life would be like as a cancer patient; confused about the disease, its treatment and prognosis; and, hopeless because I believed this was the end of the road for me. At 43, with a young family, and everything to look forward to, I was panicked and a little numb. I really wasn’t ready for this.

When I look back on this last year, I remember a lot and I have forgotten a lot. I remember four hospital stays- one for my back procedure, one for VD-PACE (velcade-dexamethasone-cisplatin-doxorubicin-cyclophosphamide-etoposide) consolidation therapy, and two high-dose melphalan autologous stem cell transplants. I remember feeling tired and having no energy and never feeling “normal.” I remember many trips to the infusion center (first at El Camino Hospital and then at Stanford Medical Clinic) and many visits to the UCSF Bone Marrow Clinic, always with my wife. I remember eating everything in site and gaining 60 pounds when I was on dexamethasone and then having no appetite and losing 30 pounds with each stem cell transplant. I remember shaving my head before VD-PACE at a Palo Alto barbershop and then losing all my hair- twice. I remember my daughters telling me I looked great, even though I knew I looked like hell. I remember all the confused hugs I got from my younger daughters and the scared looks from my older daughters. I remember my brother breaking into tears at the site of me. I remember how strong my wife was through all of this, being a rock for all of us but crying inside. I remember missing mother’s day, my own birthday, my wife’s birthday and our anniversary because I was in the hospital. I remember lots and lots of tears because I was completely overwhelmed both physically and emotionally. I remember feeling like a voyeur- a watcher of life as it happened around me. I remember crying with my youngest daughter in my arms, wondering if I would ever see her go to high school and I remember her telling me that “everything was going to be okay” and I believed her (thank you little G).

What I don’t remember very well are the treatments- the bone marrow biopsies, the tests, the never-ending chemotherapy sessions, the placement of the two PICC lines in my right arm (although the scars are a reminder), the intravenous line in the neck to collect stem cells, the self-injections of neupogen, and, especially, the horrible hospital stays. I believe that we have very selective memories and that forgetting suffering- or repressing it- is a subconscious natural survival and self-preservation mechanism. So, the last year is a little foggy, thankfully.

With all that behind me, I can’t really believe that I am writing this now. My disease is in remission and I am off chemotherapy. My back is well enough that I no longer need pain pills or back braces. I am lifting my youngest daughter and holding her in my arms and kicking the ball around with her sister. I have a lot of energy, sleep well without pills, and can almost have a full day before I get tired. And, I’m out there in the world looking for a job. Pinch me: is this real? Or, am I still lying in that hospital bed dreaming of being well again? The thin line between the two will never be lost on me.

As I write this, I am on a plane flying back from Austin, Texas where I interviewed for a job. This trip- my first since getting sick last December- seems like a transition for me from sickness to vitality, from watching to participating, from past to future. In this transition, I must remember that this experience- and this disease- is now part of who I am. It does not need to define me, but it sits next to me as I navigate through the balance of my life. There are learnings that I will embrace as I move forward. I write them here as my reminder and I hope that they may be helpful to those of you who are also in “re-entry” mode:

1. Monitor and manage your disease- Multiple Myeloma is not curable. For all of us, it will relapse sooner or later (hopefully later). Remission is not a time to forget about your disease. More than ever, stay vigilant about monitoring your disease through monthly blood or serum free light chain tests and semi-annual or annual bone marrow biopsies. When the disease relapses, you need to act quickly.

2. Stay healthy- Being in remission from an incurable disease feels a little like a second chance at being healthy. While the cancer is not in your control, your general health is: exercise often; and, eat well. I plan on posting on healthy diets for Multiple Myeloma patients in the near future, but here are my basics for a low fat, heart healthy balanced diet: lots of water (for kidney health); lots of fruit and vegetables (organic when possible), especially berries and dark green veggies; limited refined sugar; limited processed foods; limited fried food; limited white flour; limited alcohol; lots of wheat and other grains; limited red meat (grain fed where possible); flaxseed oil or fish oil (mixed into a fruit smoothie is easiest) and other sources of Omega 3s (fish, egg, grass fed meat); tumeric (with black pepper); tofu, beans and a little dairy (cottage cheese) for protein; and, yogurt (for the probiotics).

3. Stay hopeful and positive- Emotional health is extraordinarily important. Stay hopeful and positive about your prognosis. There’s a lot going on in advancing Multiple Myeloma research and treatment. Our hope is that within the next 5 years, Multiple Myeloma goes from deadly cancer to a chronic disease that can be managed with medication. Our job is to survive long enough to benefit from all the good work of doctors, educational institutions and biotech companies. A big part of survival is hope and a positive attitude- you will make it and it’s worth the fight!

4. Stay in touch with what is going on in Multiple Myeloma- It is a transformative time in the treatment of Multiple Myeloma. I have said this before: it is up to you to remain educated. Read articles and blog posts. Have real conversations with your doctors, nurses and other patients. Attend support group meetings and Multiple Myeloma conferences. Participate in online information sessions. Read pharmaceutical company news releases and quarterly reports. You should be the one to discuss new treatment options with your doctors. There is a good list of resources here.

5. Give back to the Multiple Myeloma community- If you’re lucky enough to be in remission, you have a responsibility to share your experience with the Multiple Myeloma community: make yourself available to talk with other patients; write a blog, read other blogs and comment on other people’s posts; organize or participate in fundraising events. Sharing your experience is good for others and will help you.

6. Keep your life in balance- As you can read here, I was supremely out of balance when I got sick- all work, no play and no real perspective on what is most important. When you feel better, your inclination is to jump back in, both feet first. Tread carefully- balancing work and rest and play, and not introducing stress into your life, is critical… Boy, I hope I listen to that advice!

7. Keep your perspective- You’ve seen the other side. Use this to power your attitude towards life and others in daily life. But, be careful, while you may have changed, the world hasn’t. Don’t expect people that you deal with to have the same perspective as you.

8. Appreciate every day- This is a bit of a re-start or re-birth. Appreciate every day of health and live adventurously- do things that you would not have done before. I’m not advocating jumping out of planes, but living a little outside your normal constraints is invigorating.

9. Show love, compassion and warmth- This needs no explanation and will reward you in spades.

10. Thank your caregiver, your doctors and others that have supported you- You are in remission because of your own strength and determination, the treatment you received from doctors and nurses, the support of your family and friends, the tenacity of your caregiver, and some old fashioned good luck. Be thankful for that and give back in small ways whenever you can. That network is your lifeline and you’ll need it again.

These are good days for me. I’m sure that “re-entry” will be harder than I imagine today and I’m sure that it will be a physical and emotional roller coaster. It’s tough to be diagnosed with an incurable cancer, go through a year of treatment, and just get back to “normal” life. In a way, life will never be “normal” again. It can, I think, be better, though- fuller, richer, more emotional. For those of you who are in remission, please join me in relishing it; for those of you in your first battle, or fighting relapsed disease, keep fighting, stay positive, and lean on the rest of us for strength.

For those of you who read my blog, you know that I have an interest in the business of developing and marketing drugs for Multiple Myeloma because I believe that competition and the possibility of big profits will lead to better treatments with fewer side-effects and longer remissions. My hope is that the great economic engine of capitalism will render Multiple Myeloma (and other cancers) chronic diseases that can effectively be managed by drugs.

This article in Bloomberg is a good summary of the battle between Velcade (marketed in the U.S. by Japanese-owned Millennium and in other markets by Johnson & Johnson) and Revlimid (marketed worldwide by Celgene). These two highly effective drugs generated about $2.5B in worldwide sales last year, and that number is expected to almost double in the next 6 years. Add Onyx’s Carfilzomib, now in Phase 2b trials (which I wrote about here), and you have three large pharmaceutical companies fighting it out for a huge bounty. The real beneficiaries: us.