The CML meeting I attended in New Jersey concluded this past Saturday. It was a great meeting and not what I expected.
As a review, CML is the type of leukemia I have; CML stands for Chronic Myelogenous Leukemia. I take the chemo drug Gleevec for it, which is produced by Novartis Pharmaceutical Company. I was diagnosed almost five years ago and have been on Gleevec since that time. I've had my ups and downs with both CML and the Gleevec side effects. While there has been talk of switching me to other CML drugs, I'm doing well enough to stay on Gleevec.
Several weeks ago, I was invited to a CML summit. It was for the intent of bringing CML bloggers and other social media types together for a meeting with the Pharmaceutical Company, Novartis. Not only does Novartis make Gleevec but it also makes another CML drug called Tasigna. Tasigna was listed with Novartis as the sponsor of this summit.
According to media reports, Novartis is trying to switch people from Gleevec to Tasigna. Why? Well, Gleevec's patent runs out next year while Tasigna's doesn't run out for years. Therefore, the price of Gleevec is expected to drop like a rock while the price of Tasigna will remain sky high. After reading this, I wasn't too interested in going to the summit. I expected that it would be a sales pitch for Tasigna, designed for us to then blog and spread the word. Yet, I was assured that the intent of the summit was to get input from us on how to better reach CML patients. I decided to go; I was skeptical but thought it was the venture.
Well, the first day of the summit was totally geared towards getting information from us. It seemed especially focused on how to get information into the hands of newly diagnosed CML patients. Once a person is diagnosed, the mind goes wild and there is a great hunt for information. CML is a rare disease and while there is more and more information becoming easily accessible on the internet, often times the information can be very misguided and unhelpful. So, there is a great need for accurate CML information for CML patients as well as resources for personal experiences with the disease and drug side effects. To my surprise, there was no Tasigna sales pitch on day one.
On day two there was a small blurb about Tasigna's effectiveness treating CML. Yet, it wasn't a sales pitch. It was information I had gleaned from press reports while previously researching Tasigna. Prior to coming to the summit, I read the results of three independent studies released in January. Tasigna was shown to be more effective at putting CML patients into remission and keeping them there. The blurb at the meeting touched on similar data. However, the summit concluded without the Tasigna sales pitch I expected. So, I'd say that 99% of the time was devoted to CML patients and merely 1% to Tasigna.
I hope Novartis got some helpful information from us. While I'm not an advocate of big pharma, they are the makers of life saving drugs. It was refreshing to see their interest in communicating with the CML community to provide helpful information. While helping CML patients to better navigate their disease might help the Novartis brand, even the most conspiratorial anti-big pharma patient would have to admit that this information push is a great service to the CML community. While I still think the cancer drugs are way too expensive, Novartis deserves credit for trying to help us holistically, not just pharmalogically. What is Novartis getting out of this? Perhaps goodwill and brand recognition. Yet, CML patients will benefit even more. That seems like a fair exchange to me.
I mentioned that CML is a rare disease. After having had the disease for nearly five years, I met my first co-CML patient at this summit. In fact, I met a small room of them. To hear them relate their CML journeys was captivating. We all bonded rather quickly although from different parts of the country and from different backgrounds. We were bonded by the same diagnosis and treatment challenges.
The Novartis people along with their associated firms were outstanding. The people were very professional, personal, and they genuinely seemed to care about what we had to say. They solicited our input the whole time. Novartis said they will consider and implement some of our ideas, and then get the group back together in the fall. It will be interesting to see the moves they make in reaching out to the CML community and the interaction they will have with us through the process.
So, all-in-all it was a great summit. I met some great people and hopefully contributed to helping the CML community.
Sent from my iPad
Friday, February 28, 2014
As a reminder, my variety of cancer is called Chronic Myelogenous Leukemia. The abbreviation is CML. As a result of blogging about CML, along with its physical, spiritual, and emotional components, there are quite a few CML patients who follow my blog. As a result of that, a health advocacy group, on behalf of Novartis Pharmaceutical Company, contacted me to be one of the bloggers to participate in a CML summit. In the course of our phone and email communications I asked, “Why have you selected me?” Among the reasons I was given was, “One of the goals of this summit is to gather an understanding of the information gaps and best ways to communicate within the CML community. I thought you would be able to provide great feedback and information to the Novartis/Tasigna team about your CML journey.”
The summit is next month in New York. They pay all travel and hotel expenses plus a generous honorarium. After some research, I agreed to go. Why the research? Well, there’s the simple fact that a pharmaceutical company is paying all this money in expenses to 15 of us as far away as California. Is their motivation purely to improve CML communication? Or, is there a message or product they want us to communicate about?
Well, the full sponsor name of the summit is Novartis/Tasigna. Novartis is a pharmaceutical company who is also the maker of the main CML chemo drug, Gleevec. Tasigna is a fairly new front-line CML chemo drug, also manufactured by Novartis. I mentioned in Wednesday blog post that the patent for Gleevec expires in 2015 (Novartis has filed for a patent extension). The patent for the new Tasigna doesn't expire until July of 2023. Internet searches indicate that Novartis is trying to move Gleevec patients to Tasigna.
It is projected that if the Gleevec patent is allowed to expire next year that prescriptions may go from $7,600 per month to as low as $50.00 per month. Remember, CML patients take the chemo each and every day for the rest of their lives. Meanwhile, Tasigna will still be commanding the Gleevec-type high prices. Indeed, it makes financial sense for Novartis to try to move all the Gleevec patients to Tasigna. What better way to spread the word than to sell CML bloggers on the benefits of Tasigna? Would it really help sell Tasigna to have us sing the praises of Tasigna to CML patients? Would patients be able to influence their doctors to switch them to Tasigna? Evidently, yes. Look at the pharmacy ads on TV urging patients to ask their doctor if a certain drug "is right for you." If this backdoor advocacy to the doctor wasn't effective, I doubt so many TV ads today would be by pharmaceutical companies advocating patients to talk to their doctor about using certain drugs.
Yet, on the other hand… last month three independent studies revealed that Tasigna is proving to be even more effective than Gleevec. Further, the studies show that remissions facilitated by Tasigna are much more stable and “deeper” than that of Gleevec. Dr. Tan mentioned the possibility of me being switched to Tasigna quite some time ago, if my tests didn’t settle down.
Well, I'm sitting here in Dr. Tan's office waiting my turn. Once again, I'm thankful for all the love, prayers, concerns, texts, emails, messages, etc. I've received in preparation of this appointment. I don't want to seem too needy but I sure do appreciate them all!!
I woke up about an hour before my alarm this morning and couldn't get back to sleep. I eventually got up to begin the day. While my mind and soul are calm, my body isn't so much. Perhaps I'll feel like eating after my appointment. Anyway, I went ahead and went to Whataburger to have coffee with the gang after getting well wishes and hugs from Eileen and my daughters. At Whataburger, Mr. Huff, my 92-year-old coffee drinking friend, told me that I'd be on the prayer chain of his church this morning. As I believe that some things can only be managed or obtained through prayer, I think these test results are well covered. If it doesn't turn out so well, I'll still know that I'm blessed to be in whatever shape I am, and blessed to have the loving thoughts and prayers of so many. The worst I expect today is to be told my cancer is active to the point of needing to go back to MD Anderson. Anything less than that I will consider a blessed victory. I'm also so thankful to not be in the shape that other patients in this waiting room, and waiting rooms across this globe, are in.
I'm back in a treatment room now. My blood pressure was a little high. Well, that's no surprise; the room is cold but I'm sweating too! The heart palpitations I've been having recently are here too. As far as that goes, the nausea and gastric reflux that comes with Gleevec are very much with me too. Oh well, it'll be over soon. In fact, I just heard Dr. Tan go into the next room. I'm next. It's 9:33 and I'll continue this after I leave here.
I’m back and it’s such a relief to be back in remission!! Praise God!! Thank you again for everything!!
I’ll go back to MD Anderson in August. I’ won’t see Dr. Tan until December, but I’m to get another blood test and keep him posted on a couple of items. My WBC count which equates to my immunity continues to drop. My vulnerability to infection is quite high. Actually, it’s worse if I catch a bug because I don’t have much to fight it off with. Gleevec is especially what takes my WBC count and immunity down. So, I’m to be rechecked the first part of June for my WBC count. Dr. Tan says if it continues to go lower then it’s back to MD Anderson for another bone marrow biopsy and reconsideration of Gleevec.
Dr. Tan wants me to increase my anti-reflux medicines to see if that decreases the reflux and associated heart palpitations I’ve been having. I told him just having such great news might make it all go away! He chuckled but then said that Gleevec can precipitate heart problems. He ran a heart stress test on me last year or so and the results turned out great. I presume that my body will calm down now that my health prognosis is so much better.
Thank you again for all the acts of love and kindness in this time of need. You all are greatly appreciated!!
Thursday, February 27, 2014
This is likely my last blog post before getting my test results tomorrow. I’ll make a posting after I get my results, regardless of what they are. After that, I’ll likely only post periodically but especially when time gets close to other appointments. For my Facebook friends, it’ll be easy to see when I post because I’ll link the new blog post in my status. For those not on Facebook, I may alert you to the new post by email again or just rely on you to periodically check the blog. My oncology appointments are usually every three months.
I didn’t post after my December 6th appointment because I was quite distraught by the news that my cancer had become active again, and so soon. In fact, I can’t overstate how distraught I was. I think I’m back to my “normal” now, which in part is due to Eileen. I can’t overstate the powerful healing love that gets administered to me.
Many of us struggle with the right thing to say when a physical or emotional trauma has stricken someone. Yet, Eileen, for me, always knows what to say and when to say it…or when to say nothing at all. Her timing is impeccable as it is metered by her very powerful love. I can’t overstate the quality and quantity of love that is her essence.
My whole health situation is quite weighty on Eileen. It’s often easier to be the patient than to watch a loved one endure a health matter. Before posting “Status Update” the other day, I asked Eileen to read it. After reading it she said, “It was really hard to read but that’s the reality we’re living.” Indeed, it is the reality we are living. I can’t overstate how vital it has been to me to have her by my side through it all.
Finally, faith is only as real as our ability to live it. Eileen’s spiritual faith extends to me. So many times during this journey, the strength of her faith has quietly impelled me to keep walking by faith regardless of what I’m seeing in the lab reports or feeling in my body. She shines the light on my path. Especially when the health-journey takes unfortunate turns, I can’t overstate the restorative effect of Eileen’s loving faith.
Well, tomorrow is a big day. Again, I appreciate all the prayers, love, and support. I can’t overstate that either!! I write again tomorrow.
Wednesday, February 26, 2014
I went into remission ahead of the two-year projection and everything was perking along fine. Then two years ago, out of the blue, my cancer went active again. As a result, I was a bit unnerved when I arrived at MD Anderson. Dr. Jabbour ordered another bone marrow biopsy and highly specialized blood tests. It was confirmed that my cancer was active but I hadn’t developed a full resistance to Gleevec. I was to stay on Gleevec unless my numbers reached a certain percentage. Once that happened, with Dr. Tan monitoring me, I was to return to MD Anderson for a new chemo that wasn’t yet approved by the FDA. It would be my only hope outside a complete bone marrow transplant. Even at that, I was a poor candidate for a transplant. Otherwise, I was to return to MD Anderson in one year.
Over the next year, my cancer stayed active as the numbers went up and down but stayed clear of the nasty threshold. Upon my return visit to MD Anderson, I tested negative. It was then that Dr. Jabbour told Eileen and me that it was a nearly 100% chance that I would not have come out of remission when I did. It was not good that I did. It was even worse that I stayed active for a year. However, things were hopefully back under control now. That was this past August.
A mere three months later, my cancer went active again. That is when Dr. Tan told me that if my numbers were up in February, he’d send back to MD Anderson…ahead of my scheduled August 2014 appointment. I’ll get these results from Dr. Tan in two days, Friday.
That is the basic chronological timeline of my journey with leukemia thus far. Yet, there are two major missing components. The first is the cost and the second is the emotional/spiritual component.
It’s very expensive to get sick in this country. The sad thing isn’t just that there are people without insurance; it’s that health care costs are so high that it necessitates insurance. In 2009, Gleevec was $5,000 per month. It is now over $7,600 per month. I’ve been on it monthly now for almost five years. Thankfully, our insurance has paid very well during most of that time. Yet, as deductibles and out-of-pocket limits rise, it gets more expensive every year. As we hear more and more reports of the drugs for cancer patients being cut out of the new Affordable Heathcare Act, it gets quite disconcerting. We still have our insurance through Eileen’s work but we don’t know what will happen when the full effect of the healthcare law hits. We could only pay the full price for Gleevec for a certain period of time and then that would be it. Well, not quite. I most likely wouldn’t take my daily chemo. I can’t imagine taking it until we’re flat broke and then dying, leaving Eileen in dire straights…just so I could live a little longer. I say that now but I hope to never have to test this bold assertion!! Well, there’s always the hope that the patent for Gleevec isn’t renewed (the patent expires in 2015) and it is allowed to become generic…providing I’m still responding to it and not having to take a different and equally expensive new chemo drug. Either way, Gleevec becoming generic would help a lot of people.
As far as the emotional timeline goes, it has been quite a ride. I want to live to a ripe old age just like most people do. Even more so, I want to live because it seems that Eileen, the kids, the grandchildren, and even a few of you like having me around!! While I may be a bit short on redeeming value, Eileen is the most saintly person I have ever known. If for no other reason, and speaking more truth than jest, I pray that God keeps me around in reasonably good shape for as long as Eileen will have me!! I take comfort that Eileen greatly wants me around; I hope she and the Lord have this thing worked out in my favor!! In truth, it seems many of the blessings and graces I enjoy are because God’s blessings and graces upon Eileen encompass me. So, until my appointed time, even if not for me, by the grace of God I seek to persevere for Eileen… the kids and others too.
The spiritual timeline hasn’t been as rocky, at least not too much more than the usual ebb and flow of my normal faith life. There’s a part of me that is surrendered to whatever will be. If it’s my appointed time, then away I go. If it’s not my appointed time, then I’m here to fight for every breath, within reason. Again, I owe it to Eileen and the kids to not only take reasonable care of myself, but to also fight against the health challenges that face me. Anyway, during this journey, my faith has been enhanced through the support and prayers of so many of you. While I don’t generally publicize my difficult times, it seems to never fail that when things are especially tough that someone says or does something to give me a stark reminder that God still loves me and still cares: “His eye is on the sparrow, and I know He watches me”.
So, the next marker in the timeline is two days away. I’m almost five years into this.
It’s approaching crunch time, as I’m also about five years away from the original ten-year projection of Gleevec’s maximum effectiveness for me. Wow, that went fast!! Fortunately, there are now other front-line chemo drugs to use in case Gleevec fails early. The FDA has now approved the experimental drug that Dr. Jabbour mentioned. There is already more hope on the horizon than there was even two years ago. It would be a blessing for many CML patients if the new drugs prove to be as effective as what Gleevec has been.
Anyway, regardless of what Dr. Tan tells me on Friday, your prayers and love lift me. As I mentioned the other day, I prayerfully seek to be back in remission. It means so much to my projected longevity. If not remission, then I pray for a continued low aggressive state of the cancer. High numbers will unleash a likely poor prognosis. Regardless of the cancer test results though, I pray for the grace to be the husband, father, and “neighbor” that I am called to be. May the Lord stand in the gap of my inadequacies or stand in my absence.