Friday, February 3, 2017

Imbruvica Failing After 26 months

Dave - still looking forward.
Today the oncologist told us what we had suspected, but didn't want to hear. Dave's been having increasing difficulty with fatigue, infections and orthopedic issues, so his doctor ordered some new studies and  they showed that his CLL has moved to a new, more serious level. Since this blog has two audiences (friends & family and fellow CLL travelers) I will start with the basic, layperson's summary, then move on to the medical details.

The prognosis is not good and the options are limited. At this time, the plan is to "keep our powder dry" by which the doctor means to keep using his current medication as long as possible (maybe another month or two,) then start the next medication, which is expected to work for about a year. At that point, we can hope for some new, yet-unknown treatment, or a bone marrow transplant.

Dave has some skeletal issues (degenerative disc disease and osteopenia) which are causing him significant pain. His sciatica has kept him in the house for the last month. And of course, he has fatigue & frequent skin & respiratory infections. But he's still enjoying life and is hoping for a miracle.

Dave's hematologist/oncologist ordered a new FISH Flow Cytometry (his third since diagnosis.) Dave's initial FISH Flow Cytometry showed only a 13q deletion, but he has since acquired a 17p deletion, with IgVH unmutated, and CD38 great than 30%. He's been on Ibrutinib for 26 months and still has oddly reasonable bloodwork, but enlarged lymph nodes, and the other issues mentioned above. In a month or two, the doc plans to start Dave on Venetoclax.

More details when we get 'em.

Tuesday, March 22, 2016

Seventeen Month checkup

Eight years since diagnosis and seventeen months on Imbruvica.

Dave is still on Imbruvica and it's still working. Blood work today showed normal range for red blood cells & lymphocytes and no palpated nodes. 

Side effects (from the disease or the treatment?) are increasingly a problem:

Peripheral neuropathy is worse. Dave frequently drops things and needs help opening jars & packages. 

Constant infections are a problem. Skin lesions on hands, feet & face never go away. Respiratory infections and mouth lesions have been severe for the last two months. The hematologist-oncologist is considering Acyclovir & Immunoglobulin infusions.

Fatigue is an ongoing issue - he's usually shot by noon, and is unable to walk more than a quarter mile without rest, and a mile, total, per day. 

But it could always be worse and, all things considered, he's enjoying life. 

Friday, January 22, 2016

14 months on Imbruvica (Ibrutinib)

Access to health care has been the scariest issue in the last eight months. (We moved from California to Nevada and had to switch insurance exchanges, specialty pharmacies, and doctors.)

But the leukemia treatment, Imbruvica (Ibrutinib), has been doing its job. Dave saw his new hematologist-oncologist today and got 6 vials of blood tested. Everything looks great! Red blood cells are up (in normal range,) lymphocytes are down (in normal range,) platelets are slightly up (still a little low,) a few lymph nodes are slightly enlarged, but not causing problems.  All-in-all a good check up.

The side effects of the Imbruvica (Ibrutinib) treatment are fatigue, brain-fog, infections, nose bleeds, and now (new ones) dizziness and shortness of breath on exertion. Dave’s new hematologist-oncologist thinks that is due to altitude - we just moved a couple of months ago from sea level (San Francisco, CA) to 4,500 feet (Reno, NV.) I didn’t have any trouble adjusting so I thought Dave’s issue had to be the CLL. However I just asked around and some of my neighbors say it took them much longer to adjust, so maybe that’s all it is. The doc ordered a chest x-ray just to be sure.

The other good news is that living in Reno is significantly less stressful and more enjoyable than living in San Francisco. (One of our new neighbors, with Dave, at the top of this entry.)

Tuesday, April 14, 2015

Imbruvica (Ibrutinib) 5 Month Update

David W. Sumner, March 2015

A few days ago I got an email from another CLL’er wanting to know how Dave was doing after five months of Ibrutinib. (Sorry for the long delay in posting.) We answered her by email, and here’s the update for everyone else who was wondering.

First of all - Dave is still here and still on the Ibrutinib. Keeping him on the drug has been a Kafkaesque nightmare of financial and insurance regulatory bureaucratic hurdle jumping. I’ll spare you the details, other than to say, never a week goes by without some heart-stopping phone call or letter informing us that he is no longer covered or that we owe some pharmacy/doctor/hospital/insurance-company some impossible amount of money. It really would take a full time office assistant to keep up with and make sense of it all. We do the best we can. Sometimes we have a glass of wine and laugh about it - it’s just too absurd.

The good and the bad about the drug itself? That’s hard to tease out from the effects of the disease. The bottom line is that he is still here and enjoying life, several years after being diagnosed with a disease that was expected to kill him before now. He’s had a few close calls. I think he’s in better shape than he was last fall, before starting the Ibrutinib. At least the serious, debilitating respiratory problems have faded. And he looks good - better than he has in years, actually. Losing those bulky lymph nodes made a huge difference.

However, there is no shortage of problems.They mainly fall into three categories: fatigue, brain fog, and infections.

The fatigue is unrelenting and it is mental as well as physical. So far, we have not discovered any diet or sleep strategies that seem to help.

The brain fog is serious and it is probably the most disturbing aspect for Dave to adjust to. His memory for facts & details and his ability to focus have been shredded. 

The infections are what worry me. Every little thing (a hangnail, a blister, an ingrown hair) turns into a huge raging abscess, without medical intervention. And medical intervention is hard to come by since we cannot find a family physician who takes his insurance. (His oncologist is fine with the insurance, but the oncologist does not deal with infections.) Which means he has to be treated in emergency rooms. Which leads to different problems …

But dealing with new problems is better than no deals at all. So, we’re keeping on.

Sunday, November 16, 2014

Imbruvica (Ibrutinib) Day Five, and CLL Networking

Dave started the Imbruvica (Ibrutinib) five days ago. So far the main side effects have been mild nausea and extreme fatigue. Nothing else seemed to change, good or bad, until yesterday afternoon, when we noticed that the lymph nodes in his neck seemed a little smaller.

These kind of blow-by-blow symptoms are mainly for the benefit of other people with CLL. Although we started this blog for family and friends, we soon became aware of the on-line network for CLL (Chronic Lymphocytic Leukemia.) Which is a lifesaver, sometimes literally. Check the sidebar >>> for our favorite links.

This disease is common enough in the general population to warrant interest from the bio-research industry: the National Cancer Institute says that this year (2014) there will be 15,720 new cases of CLL diagnosed and 4,600 deaths from CLL.  About 120,000 people in the US are living with CLL, according to the Leukemia & Lymphoma Society. And the National Institutes of Health estimates that 2% of the population has the condition but are undiagnosed. And yet, it can be maddeningly difficult to get knowledgeable medical care - not only for the main diagnosis, but for all the crazy secondary problems that crop up, due to the peculiar gene mutations in CLL, and a compromised immune system. MD Anderson estimates that 15% of Leukemia patients were misdiagnosed before coming to the cancer center.

Anecdotally, I can say that it's more common than not, to have (non-CLL) doctors just brush off your symptoms, act like they're no big deal and actually tell you that "it'll go away on its own" (like a sinus infection that has lasted for years. Or tonsil/throat/ear/breathing problems that make it hard to sleep- one doctor told Dave that "you're not fit, you need to exercise more.") It's enough to make you feel a little crazy. Until you start reading these blogs by other people with the exact same stories. Suddenly, you realize you're not alone - there are other people out there, dealing with the same issues.

Tuesday, November 11, 2014

Brave New World of Cancer Therapy

(Actually, these are AmoxKClav - the Ibrutinib hasn't arrived yet.)

This morning we were awakened by a phone call from a pharmacist, who wanted to discuss the side effects, scheduling, lab testing and so on, for Dave’s new oral cancer therapy, Ibrutinib. He put it on speakerphone and I took notes. We both asked questions. It was the usual pre-chemo talk, except this time we were laying in bed, instead of sitting in plastic chairs after a 60minute bus ride. 

(An excellent development for someone whose main complaint is fatigue and shortness of breath. And whose immune system is so shot, a handshake is more feared than welcomed.)

Now we await the Fed Ex delivery of the drugs - I just tracked it online and it’s on a truck, somewhere between South San Francisco and here. Should be here by noon.

We can even do the most frequent blood testing at home, if we can get the system set up:

Wow, some things *are* getting better.

Monday, November 10, 2014

Help is on the Way

Today is a huge step forward. I received word that my prescription for Ibrutinib has been approved and a month’s supply is being shipped overnight. I should be able to start taking it Wednesday morning.

Ibrutinib is extremely expensive ($100 per tablet.) The standard co-pay through my insurance is $1000 per month. But because of the super human efforts of the professionals at Pacific Hematology Oncology Associates at CPMC, specifically Dr. Tuan and especially Pharmacy Technician, Lori Heggli Rand, my co-pay was reduced to $10 per month.

For me at this stage in the development of my CLL, Ibrutinib is the difference between life and death. Ibrutinib was approved for treating CLL only 8 months ago. It hasn’t been in use long enough to know if it will be the last course of treatment I will need. It may be effective indefinitely, we don’t know. There are newer therapies currently in trial phases that may prove more effective and a permanent solution. We will know in 3 years or maybe sooner.

Ibrutinib won’t restore my damaged immune system to a healthy state, but it will suppress the cancer as long as I take 3 tablets every day for the rest of my life.

So all looks promising for now and the most I can hope for right now and, for me that is indeed huge.

Thursday, November 6, 2014

New Treatment Plan

Dave, at lunch today, between appointments.
Today, we were at the medical center (CPMC) all day, with a short break for art (saw a couple of photo shows downtown.) Dave's condition has deteriorated rapidly in the last few weeks and a few days ago his primary care doc seemed alarmed at the change in Dave's condition, so he got things in motion. Today we saw the pulmonologist and the oncologist. They have all been in communication with each other, which is a relief, and they are all in the same building, which is the same place where Dave has gone for cancer treatments.

The upshot is, it's only been two years since the last round of chemo, so another round at this time would have a higher risk than benefit. Just a few years ago, there would be no other options. But a new treatment was just approved 8 months ago: Ibrutinib.  It should reduce the cancer cells and their adverse effects, but not right away. Just like the older chemo, it's likely to make him feel worse before he feels better. And it's not without side effects. But it's still better than the alternatives. It's a pill, and he will need to take it for the rest of his life. He's thrilled that he doesn't have to deal with IV infusions again.

The next hurdle is getting our insurance to approve the treatment, and then affording the co-pay. And then obtaining the drug (apparently it has to be shipped here from Texas?) Luckily, Dave's oncologist has a staff person assigned to help us through these issues. We met with her this afternoon and she was very optimistic and reassuring. It might be a week or so before it's all figured out and he actually starts the drug.