Time to Switch Gears

Well, it's been a while since I've blogged about CLL. But cruise control on Idelalisib has been
interrupted and we are shifting gears.

As many of you already know, John was an early participant in the Phase I clinical trial of Cal-101, now known as Idelalisib or Zydelig. He began taking Cal-101 in May 2010 after failing FCR (chemotherapy). And he has enjoyed remission status for a full five years. I've frequently referred to this symptom free part of the journey as being on cruise control.

Over the past few months, John's white count has been trending upward and his platelets have trended downward. The progression has been slow but steady. Nothing alarming. No urgency. But his CLL is definitely progressing again. Cruise control on this particular drug is ending and we must take another course in treatment.

CT scans this checkup have indicated disease progression in his lymph nodes as well as in his blood. Again, not an alarming increase in the nodes, but significant change in more than one area of his body.

For the next six weeks, John will continue taking the drug and at our next appointment we will discuss new treatment options. I'm sure Ibrutinib will be one option on the table and possibly another clinical trial will be offered.

I have enjoyed taking a break from CLL immersion during our cruising time. I've also known this day would probably come eventually. But I have not worried about it because I believe that transitioning to a new therapy will provide a new remission. There has been so much advancement in treating CLL in the last few years. And there are other drugs similar to Idelalisib that work in the same way but through different pathways. Other patients have transitioned successfully from one drug to another. But in spite of what I know intellectually, I have to admit that getting this disappointing news triggered a wave of anxiety for me. I felt so fragile most of Monday and into Tuesday.

Dr. Flinn was out of town this visit and it was the nurse practitioner who gave us the news. Knowing John's white count had been inching upward and platelets had been low for the first time since beginning Cal-101, I thought I was somewhat prepared for this. I had even anticipated there might be some lymph node change with the scans. John said last week that he thought he could feel one in his neck for the first time. But when I heard the NP say "disease progression" and that John would not be able to continue Idelalisib even at an increased dose, fear grabbed me by the throat and I knew tears were in my eyes. If I even blinked or tried to talk, they would have been on my face.

We were asked a question (I don't even remember what) and John looked over at me for my response. When he looked at me, he made a joke. "Don't ask her," he said, "she'll start crying." It wasn't the kind of question that would make someone cry. But I couldn't say a word. He said later that I had that deer in headlights look and he just knew I was fighting back a surge of emotion. He was absolutely right. I guess there was some small part of me that dared to hope Idelalisib might work forever. And those hopes were dashed.

John has not felt good for months. His fatigue has been severe and he's had a lot of unexplained pain in his body since late fall. Dr. Flinn has done extra blood work to rule out rheumatologic issues. Nothing has shown up indicating any problem other than a "profound" deficiency in Vitamin D. So I've been reading about fibromyalgia and talking to people I know who have it. I've learned of other CLL patients who suffer from this condition. And I've discovered that several good friends battle it as well. John may or may not have fibromyalgia, but he has many textbook symptoms. And fibromyalgia cannot be diagnosed with blood work. It's also possible the pain and fatigue are CLL-related or even treatment related. We'll see if he feels better after transitioning to a new treatment. And we will also consult a rheumatologist about the possibility of fibro.

There are so many things to consider when comparing treatments. In my reading the last few days, I've learned that tumor lysis syndrome (which can be fatal) has been a problem with ABT-199 (a current drug being studied). The drug shows great promise in controlling CLL, but John has one kidney and has already experienced tumor lysis syndrome previously, after his first Rituxan infusion in 2008. It was scary. I really did think I might be losing him that day in the doctor's office. He lost consciousness twice. The first time, he passed out in the elevator as we were leaving and hit his head on the metal threshold as the doors opened.

For those who don't know what TLS is, it's a metabolic condition resulting from a large number of malignant cells being killed by treatment and having to be processed through the patient's body. It can result in kidney failure. And John only has one kidney. I've been trying to protect that one kidney to the best of my ability since his diagnosis.

Ibrutinib is already an approved therapy for CLL and it is successfully controlling disease progression for a large number of patients. It has relatively few side effects. Fewer than Idelalisib, actually. But one of its known side effects for some patients is joint pain. And since John is already experiencing quite a bit of chronic pain, I worry about that side effect.

I don't know what Dr. Flinn is going to suggest, but I'm trying to get back to soaking up the latest information so we can at least know what questions to intelligently ask about the treatment options we're given. And, of course, I want to help John make informed decisions.

I'm a good caregiver and patient advocate. But this week I've been a pretty fragile wife. I've had to ask John to forgive me more times than usual because I get needy when I'm feeling fragile. And I am not always aware of my tone when I'm feeling stressed.

I have the best husband in the world. He's not perfect even though I once thought he was. But he is perfect for me. And he is without a doubt my rock.

This has been a challenging week, but it's also been a good week. I don't think I ever take John for granted. After all the years I endured an abusive relationship, a day doesn't go by that I don't think about how much I appreciate him. I truly am thankful for every day even when it's smooth sailing. But there's something about the waves kicking up unexpectedly...

My gratitude for all that I have today is magnified by the uncertainty of what I will face tomorrow.

While we are both optimistic this is just a bump in the road and new treatment will get his CLL under control again, it's still a reminder that every day is a gift.

I'll keep you posted on the next part of the journey. And thanks in advance for your prayers!


Unknown said…
Shari you all have been on my mind a lot in the last month. I continue to pray for continued healing for John, and comfort for you both. I know the deer in the headlight condition. I've had it. I know you all are in the best place for his continued success. It does put everything in proper focus...clearly and immediately. The only thing that gets us through the every day peaks and valleys of cancer is God. I lean on him heavily these days, and during our journey of treatments. It is reassuring that there has been so much progress for CLL. I hope to live long enough to see all cancers treatable. There are no words but we love you two and you are in our thoughts and prayers. God Bless! John Thomas.
Wanda Mason said…
Shari, my sincere sympathy for what you and your husband are going through. My thoughts and prayers go with you that you find something that will make it better. I know the feeling of wanting to do things that your body just won't allow you to do any longer and the fight to find something to help make it better. At one time, I was diagnosed with CFS but it turned out to be allergies to mold that were making me so tired, weak and sick. At one time I couldn't do anything to keep my calcium to a normal level. It just kept getting lower and lower. Then I found out it was because my Parathyroid glands had stopped working and that is what regulates your body calcium. I could never have taken enough calcium to work. It needed the Vitamin D to work. I went through a few years of trial error, including a 9-day stint in the hospital because of renal failure (Vitamin D poisoning because I was taking too much, which was 100,000 units per day.) Now I take 25,000 units to keep my calcium level at the low part of normal so I don't get kidney stones. I mentioned the CFS and the Vitamin D because you mentioned both of those in John's case. I've never been diagnosed with any type of cancer so far but my heart really goes out to you and John today because I know how it can be with a spouse. I don't know what I'd do without Robert. Love you, Shari

Shari said…
Thank you both, John and Wanda! I feel your love, your concern, and your prayers. I truly believe this is just a bump in the road and John will be back in remission on the next "breakthrough" drug out there. The one he's been taking is just one of several. Ibrutinib is already FDA approved. And the others are still in clinical trial. At this point, I have told John that a part of me is leaning toward the approved drug only because should he enter a new trial, he will have to agree to the protocol. And we will start all over with frequent scans and office visits for blood draws. I am concerned about all the scans he's already had with the first trial and you have to agree to be studied and provide the drug company with whatever they ask when they supply the drug and enroll you in the study.

Wanda, I will ask if Dr. Flinn has checked John's parathyroid. I know he checked for any signs of rheumatologic issues and found nothing. He didn't tell me every single thing he was trying to rule out and I haven't asked. All he found was the severe Vitamin D deficiency. I appreciate all the input. I don't want to drive Dr. Flinn crazy with my questions, but I'm not going to stop being John's diligent advocate either. I don't think I'm an expert on anything but I don't want to leave any stone unturned and I want John to be well or as well as he possibly can be.
Linda B. Mercer said…
Shari, will be praying, praying, PRAYING for you guys! I wish we were closer so that I could be there for you - but you and John will not be far for my thoughts. Keep doing what you're doing being John's advocate. Only you can provide that voice for John when he's not able to speak up. You are an awesome caregiver and will be praying for a good report!
Anonymous said…
hi Shari
really sorry to hear about John but I'm sure it will only be a bump in the road like u say there are now other options but it's only natural to be worried. how are you both at the moment, how is john's fatigue? is your mother in law ok? I'm still running 5 K four to five times a week but lymps around neck prominent
Both keep well
Take care
Shari said…
Hi Steve, Always great to hear from you. Sorry about those lymph nodes. Are you still just waiting as long as possible before engaging a treatment? I know different drugs are available or not available in different areas. Seems like I remember you saying something about that.

We are both doing well. John is still plagued by fatigue and he is thinner than I would prefer him to be. We are both concerned something other than CLL may be going on. Takes time to get into rheumatologists and we may even need to see a neurologist. Just not sure yet. But he is plugging along and even though he doesn't feel great most of the time, he is thankful to be functioning through the fatigue and the pain.

Marian is still doing great on Cal-101/Idelalisib/Zydelig. I never know what to call it. Since we began with Cal-101 in 2010, we all still refer to it as Cal-101. :) You stay well and keep running! And thanks for staying in touch. Love hearing from you. I need to get back to more regular blogging. And I do intend to post updates about what happens next for John once we see his specialist in July.