I'm Still Here...After Five Years

Five years. Five years since that doctor I had never met before confirmed what my family doctor suspected: I had stage IV invasive ductal breast cancer with extensive metastases to my liver and bones. Life would never be the same. Life would, very likely, not be as long as I expected. 

I spent an hour or so searching for the latest and best statistics about metastatic breast cancer (also known as Stage IV). Here is what I found:

• "In Canada, about 10% of new breast cancers are metastatic when they are diagnosed, and 30% of women who are first diagnosed with early stage breast cancer will go on to develop metastatic breast cancer." (Canadian Breast Cancer Foundation)
• "Median survival after a metastatic breast cancer diagnosis is three years. Median survival in 1970 was 18 months.  No one dies from breast cancer that is confined to the breast." (Metastatic Breast Cancer Network)

The Canadian Cancer Society hasn't yet released their 2016 statistics, but here is what they estimated for Canadian cases of breast cancer in 2015. (Read more: http://www.cancer.ca/en/cancer-information/cancer-type/breast/statistics/?region=on#ixzz4NSTzQ2FG):

• 25,000 women will be diagnosed with breast cancer. This represents 26% of all new cancer cases in women in 2015.
• 5,000 women will die from breast cancer. This represents 14% of all cancer deaths in women in 2015.
• On average, 68 Canadian women will be diagnosed with breast cancer every day.
• On average, 14 Canadian women will die from breast cancer every day. (Or as MBC Time put it in an October 2016 campaign, "Every 2 hours in Canada, 1 woman dies of metastatic breast cancer.")
• 220 men will be diagnosed with breast cancer and 60 will die from it.

As for Canadian survival rates: the 5-year relative survival (based on estimates for 2006–2008) is 88% for women and only 80% for men. These survival rates are for people diagnosed at all stages of breast cancer, I assume including Stage 0, which isn't yet invasive (hence not technically cancer). Of course the survival rate for those, like me, with Stage IV breast cancer is much lower. Unfortunately, I couldn't find a Canadian statistic to share. The American Cancer Society reports that "metastatic, or stage IV breast cancers, have a 5-year relative survival rate of about 22%." 

Yet here I am. Why am I part of the 22%? Well, for a good explanation of the stats, read the article "The Median is Not the Message" by scientist Stephen Jay Gould. In addition to what he says, I would point out that statistics are always based on the past. They reflect the diagnosis and deaths of patients treated in past years. They reflect older therapies. If I have been fortunate, it is that my breast cancer is identified as triple positive breast cancer. It is ductal breast cancer that is positive for the three receptors for which non-chemotherapy treatment is available: estrogen receptors, progesterone receptors and HER-2 receptors. Over the last several years, even since my diagnosis, important new drugs have been developed that target these receptors, interfering with my cancer's ability to reproduce itself and grow. One of these drugs is Herceptin. It costs some $45,000 to $50,000 per year. When it is combined with a newer drug, Perjeta which I don't yet receive, the cost mounts to $100,000 per year. So far, OHIP covers the cost of my Herceptin. For reasons related to how Perjeta was studied, I am not eligible for OHIP to cover the cost of adding Perjeta to my treatment, asI was already on Herceptin when Perjeta was approved. If my oncologist deems Perjeta necessary to my care, I will have to rely on my private health insurance to cover the cost above a yearly $3,000 deductible. But yes, I am fortunate that my doctors can rely on a wide variety of chemotherapy drugs as well as a number of anti-estrogen drugs, plus a handful of anti-Her-2 drugs to treat my cancer. Thanks to the prevalence of breast cancer, a great deal of public and private funds go towards research, resulting in the availability and government funding of numerous drugs to fight breast cancer. My sister-in-law, on the other hand, has a rare cancer for which only a few chemotherapy drugs are recommended, even though there is no research that supports their use for that cancer. So, I suppose I am fortunate.

Since my last post here, I have been on the same treatment: Vinorelbine (my vino or vanilla bean) chemotherapy, Herceptin and Pamidronate. Cancer treatment typically works on a three-week cycle. On Day 1 and 8 of the 21-day cycle, I get a ten-minute infusion of vino. On Day 1, I also get a half-hour infusion of Herceptin. Every nine weeks, I also get an hour of IV Pamidronate, which is a bone-building drug. I have been on this treatment nineteen months. And I will be on it as long as it works AND I can tolerate it. So, how am I tolerating it? Well, not bad. Initially, I had some stomach pains and constipation. They didn't last long. After a couple of months, I developed neuropathy. I have tingling and numbness in my pinky and half my ring finger. It settled down after a few months, but resumed intensity last month. I think that may be because I reduced my Lyrica (nerve pain) dose by two-thirds over the summer. I have also developed diarrhea that seems to be worse after vino infusions and disappear on my no-chemo week. The last two CT scans identified thickening of my bowel wall which may be pan-colitis. Fatigue is also an issue. It comes and goes, but I still have the occasional week where I seem to sleep for hours and hours during the day. Sometimes, I'm not able to rouse myself to make supper. I sleep through most hockey games and have missed the resolution of half the mysteries I watch. But I've kept my hair!

My medical oncologist, to whom I literally owe my life, was on leave over the summer. Lucky for me, he was replaced by two very experienced oncologists. One was very thorough and ordered a lot of tests. The other had the world's most soothing manner. I appreciate all those qualities in a doctor. Some of the tests this summer suggested that I might have had progression in my bone metastases. I was a little worried I might have to switch to a more difficult treatment regime. Hell, I was a little worried things were going downhill. While the tests used the P-word (progression), the oncologists didn't. They felt, on balance, that my cancer remained stable. Considering that my side-effects have been a little more challenging of late, however, my regular oncologist, when I saw him last week, suggested we cut the Day 8 vino infusion. (Actually, the other doctors had raised the possibility of a chemo holiday.) As soon as my doctor suggested dropping Day 8, a look crossed his face and he excused himself to do some checking. After talking with his colleagues in Pharmacy, he warned me that if I were to see cancer progression without Day 8 vino, OHIP might conclude I had become resistant to Herceptin and cease funding it. I am now on hold. Friday, I will get my Day 8 treatment and will continue to do so unless my oncologist can get some assurance that he would be able to maintain Herceptin and restart Day 8 vino if I progressed. When drugs are this costly, hard choices must be made in a publicly-funded system. All things considered, I am much happier to live in Canada, where most cancer treatment is publicly funded than in other countries where I would, even with insurance, have to pay part of every test and every treatment. I won't go bankrupt fighting cancer, at least.

I'm not sure if in my last post I talked about the effect of Vinorelbine on my immune system. Well, it does a number on it. I get my blood tested before every vino treatment and have been warned that seven to ten days after treatment, my immunity will hit a low point. I was advised to take a number of precautions, most of which I have abandoned after nineteen months. I was to avoid crowds, restaurants, specific foods and especially spoiled food, germs in general. As a result, I decided to stop volunteering at my daughter's elementary school where I was working with the Grade One and Two kids who were a little behind with their reading. I miss that. I really enjoyed reading with those kids, but truth be told, they were a bit of a snotty bunch. Even though I carried Kleenex and hand sanitizer to every session, I couldn't risk continuing to volunteer there. Even without it, I did end up in hospital this time last year. I developed pneumonia again, along with a plerual effusion.

Last year's hospitalization wasn't as scary as the previous two, when I was septic and had a broken pelvis (or both). But it was a little scary. I had several day of delirium and extreme drowsiness. My niece was visiting that week and I couldn't even carry on an intelligent conversation with her. I regret that, not that I had a choice. The pneumonia was treated with antibiotics, but I had a recurrent fever. Then the pleural effusion was found. It is basically fluid between the lungs and chest wall. I had an uncomfortable procedure during which a tube was inserted into the pleural space. Then for several days I was attached to Fred, my name for the suction unit that withdrew the fluid. Eventually, I was disconnected from Fred and allowed to leave the hospital for a couple of hours in time to vote in our federal election. I was released the next day. I think I was in hospital for two weeks, about a week of that in isolation. Fun, fun.

Really, other than the hospitalization, which I expect will be something I experience every year or two, things have been going well. My pain has been well-controlled for a couple of years. As a result, I was formally discharged from the Ottawa Hospital Pain Clinic. Of course, this means I have to go to my family doctor for my pain medication renewals. He doesn't do renewals by fax, except at a cost. So, every three months, I have to present myself to my doctor for renewals of the narcotic and other pain medications. Ah well, there is always room for another doctor's appointment.

I have just been living my life, and glad to do so. I try to make memories with my family, which is increasingly difficult now that we're living with a teenager. I'll give her credit. She was very grateful for the two week trip we took to Cape Breton Island and Moncton this summer. She is a grateful kid, with only occasional flares of "teenagerness." For this, I am grateful. Together we did the Run For the Cure earlier this month. We were out of town visiting my sister-in-law the weekend of the Run, so we did it in Mississauga. We both missed our teams, hers her elementary school teachers and mine a metastatic team. But we ran in the morning, before spending the afternoon with family and driving home to Ottawa.

I have no good excuse for not blogging more. Just that I'm living life. And isn't that what it's all about? Here's hoping in another five years I post again, if not sooner. 

Another Shot in the Bum

Last June, I got my last shot in the bum in the name of science. I had a caudal epidural to ease my nerve discomfort. It took a while to work, but one day I realized that the tingling was gone. I could move into all sorts of positions without a zing.

In the last month or two, the tingling has returned, so I scheduled another epidural at our Pain Clinic. With the muddy weather, my daughter and I have had to give Mango several baths, sometimes in the same day. Bending over, even from on my knees, has caused my entire left buttock to tingle. That's not as much fun as it sounds. Just bending slightly over the sink to brush my teeth causes the same problem. I get a different tingle if I lay down on too high a pillow. Installing a car harness for Mango in the van was distinctly uncomfortable.

In advance of my two o'clock appointment, I had to fast from 8:00 am. I could take clear liquids until noon. I got to the hospital early for my appointment, as they requested. [Really, if they want you there twenty minutes early, why don't they make the appointment for 1:40?] I scarcely had time to complete the usual paperwork on my pain before the nurse called me in. From there, it was zoom, zoom, zoom and I was out within the hour.

The procedure is awkward, for all concerned. First, I had to lie face down on a slanted table with a pillow under my hips. As soon as the table was straightened and raised, my pants were lowered. Yes, the handsome technician, or was he a nurse, exposed my tingly buttocks and washed them with a bright pink cleanser. Since I had had the procedure before, the doctor and x-ray technician easily found the spot the we're looking for. The doctor shot some local anaesthetic into, um, my bum-crack. It worked instantly and before I knew it she had injected the steroid. Pants up, I was moved to a chair and given a snack while my blood pressure was monitored.

Never one to put my feet up when I am supposed to, my Sweetheart and I stopped at a pet store and the veterinarian's before returning home. I have tried to stay mostly couch-bound since then, the local has worn off, but the steroid isn't yet working. So I have a sore and still tingling bum.

The doctor used a lower steroid dose than last time, since I described my previous side-effects. Last time, I had the typical steroid face: round, red, hot cheeks. I felt "odd" for a couple of days, and low, like chemo low. And I had chills. I was just rereading my blog posts from June 2013 and remembering the side-effects. Ew. Like childbirth, it is good to forget. I hope with the lower dose, I can avoid all that. Either way, for me to do it again, it really had to be worth it. I just hope it works as long this time.

There is a lot of good information from hospitals and clinics to be found online. But if you are considering a caudal epidural and would like to talk to me about it, please email me at jimsgirlblog at gmail dot com. I would be happy to answer any questions you have. You should also have a look at my posts from last June about the procedure.

Have any of you, dear readers, had a caudal epidural? What was your experience like?

Epidural Update

I've been meaning to update you on the caudal epidural I had on Tuesday afternoon at the Ottawa Hospital's Pain Clinic. For those of you considering the procedure, I'll tell you a bit about how it was done and I will report on success and side-effects to date.

First, The Procedure

I was met by a nurse who interviewed me about my current pain medication and pain levels. After a bit of a wait (I'm not complaining), a young doctor I hadn't met before came in. I'd seen him consulting my regular anaesthesiologist moments before. He asked me a lot of questions about the extent of my pain and nerve symptoms, explained the procedure and its risks and then asked me to sign a consent form.

Moments later, a handsome young man -- who Sweetie thought was dressed for a joust given his head to toe x-ray shields -- took me into the room where the procedure would take place. He introduced me to the female X-ray technician and asked me to mount the bed. Yes, "mount." The bed was at a 30 degree angle. I was to aim my hips at one pillow and my head at the other. Now I'm not very athletic at my best... and Grace is not my middle name. So, it is a miracle I made it on there in one try. Then things got weird. I mentioned that the caudal epidural goes into the tailbone. Well, I hadn't thought through how they would get there. You see where I'm going with this? Yes, that's when The Jouster pulled my pants down around my hips. But we've just met!

He also set me up with a blood pressure cuff and the little thingy that monitors your blood oxygen. Then the young doctor came in. They placed a drape, wiped my butt with disinfectant, which I later discovered was that bright pink stuff that is hard to scrub off. Probably the worst pain of the procedure came next, when they gave me a local anaesthetic. I didn't feel much, maybe some pressure, when the doc inserted the catheter through my tailbone. The Jouster kept me informed of each step of the procedure, and reminded me to breathe deeply to relax. I felt more pressure as the doctor injected some contrast dye to mark his location. He continuously asked the X-ray tech for another shot, sometimes asking her to switch the angle of the X-ray machine for a better view. All that to make sure that the drug was released where my frazzled nerves needed it most. Next thing I knew, the steroid was being injected and the catheter removed, neither of which I felt. I was then unhooked and moved to a wheelchair for 20 minutes of monitoring... And a snack, which I appreciated having fasted through lunch.

The After-effects

The first few steps after I left the wheelchair felt a little funny, but I'm always stiff when I get up. Plus, my bum was numb. We stopped to pick The Bean up from our neighbour on the way home and I was able to stand a while to chat. Later in the evening I was drowsy, but that isn't unusual. I couldn't really tell if the epidural was working. I was told it could take a week to get the full effect. I thought I was feeling fewer zings. That was good.

The next day, I felt fine most of the day. In the evening I had some chills. I also got wicked indigestion after eating a chocolate bar. I also felt in a peculiar mood for a short while. By the next morning, it was clear that I was reacting to the steroid as I did during chemo. Thursday, my cheeks were hot and red all day. I was told I looked like I was teething! The chills continued off and on, as did the indigestion. I felt quite low, chemo low, for a couple of hours Thursday and again Friday. For what, I ask you?

This is the problem, the zings haven't completely disappeared. I do think they are fewer and farther between, but they are not gone yet. If I had to decide now, I don't think I would repeat the procedure. But let's give it a few weeks to see what the real improvement is.

It wasn't really pain I was hoping the epidural would relieve. The medication change in early May did that. It was the lingering nerve damage, which left long enough will become permanent. I want to be able to lie down beside my girl at bedtime, I want to brush my teeth, I want to pass the potatoes without feeling a zing up or down my back. That's all I'm asking for. We will see if I get that.

Epidural Time: Wish Me Luck!

I am fasting now, in preparation for my caudal epidural this afternoon. To avoid nausea, the Pain Clinic asked me to stop eating six hours ahead. I still have a few minutes where I can drink clear liquids, then nothing for two hours.

The epidural will go into my tailbone and be threaded up to my mid-back, where bone mets caused my vertebrae to shatter before I was even diagnosed with this cancer. There, a steroid will be released, which we hope will relieve some of the nerve pain I have been experiencing. Maybe I will be able to say goodbye to the zings that go up and down my body every time I bend a little, like doing something as risky as brushing my teeth. I get a lot of muscle pain in my mid-back too. I think the muscles are trying to firm up what the bones can't. I don't know if the epidural will help with that.

There are a few risks associated with epidurals. If the spinal cord is nicked you can end up with a headache, or dead, if I understood that right. Perhaps I shouldn't Google as much as I do. No, really there were helpful documents online about caudal epidurals. And the anaesthesiologist explained it to me at my last visit. This procedure is safer than an epidural for labour. First, they go in the tailbone, which is farther from the spinal cord, and second, the procedure is guided by X-ray to ensure they know where they are before releasing the medication.

I am not worried or nervous. I think. In fact, I think my greatest concern is that I have to skip lunch. Really, I better go now. I just have ten minutes left on clear liquids. I`d like to get a few more calories in me before I have to stop drinking. Cranberry juice? Oh that reminds me, a possible -- and temporary -- side effect is urinary incontinence. Oh great!

Wish me luck, friends!

Working to Stay Ahead of the Pain

I think I've mentioned in the past that I am a patient at my local hospital's Pain Clinic, here in Ottawa. Because my spine fractured in several places before I even got my breast cancer diagnosis, one of the first things my medical oncologist tackled was getting my pain under control. That's where the wonderful nurse Gini comes in.

Gini's focus is on the palliative side of cancer care, relieving the pain. She saw me before and after my pelvis broke and put me on the waiting list for the new Pain Clinic. Before long, my pain had receded to the point that I no longer needed the pain pump full of Dilaudid. In fact, it was putting me to sleep as I ate breakfast! She kept me at the clinic, although my pain was manageable. I think she had a feeling...

When I saw Gini at the clinic in early February, things were so stable we decided I didn't need to come back for three months. Unfortunately, I didn't realize the effect some treatment changes would have on my pain in the interim. In late January, after a short chemo break, I was switched to daily Tamoxifen pills. My late January CT scan found a tumour on my right femoral neck that put me at risk of fracture and was subsequently treated with radiation. In March, I started a double-blind clinical trial where I was either continuing my bone-building Pamidronate treatment (but every four weeks instead of three) or I was getting Zometa, a similar drug. Put them all together and my pain, or rather my pains, increased. I was taking long-acting hydromorphone contin (a narcotic), Lyrica (for nerve pain) and Naprosyn (an anti-inflammatory) as well as hydromorphone (AKA Dilaudid) for breakthrough pain. I was taking enough to address the bone and nerve pain caused by my tumours and fractures, as well as the pain of chronic problems I have with my jaw and wrists. However, by the time I returned to the Pain Clinic in early May, I was taking several doses of Dilaudid for breakthrough pain each day. I returned to wearing my bite guard at night, as well as my wrist braces. Something had to change.

The young doctor I saw took the time to fully understand my history and the pains I was now experiencing. She consulted a senior anaesthesiologist and returned with a proposal. First, we adjusted my medication, increasing the Lyrica dose and changing the hydromorphone contin from twice to three times a day. Second, she proposed that I return at the first available appointment (early June as it turns out) to have a caudal epidural.

With the aide of a skeleton, she and the senior anaesthesiologist explained that a needle would be inserted in my tailbone and a catheter would be fished up my spine to where my compression fractures occurred and the pain relieving steroid would be released there. The procedure is safer that a traditional epidural for labour. The tailbone injection site is farther from the spinal cord and therefore less likely to cause an injury. Also the placement of the catheter will be guided by X-ray. The relief from this type of nerve block can last as long as six months, generally less than that for cancer patients.

I learned about nerve block's from one of my favourite bloggers, Scorchy at The Sarcastic Boob.  Her recent posts, "Rear View Mirror" and "Paincation Redux" tell her tale of pain and relief and explain the nerve block she gets (it's a little different from the epidural). Thank you, Scorchy for introducing me to the nerve block! It meant that when I went to the Pain Clinic I knew there were options. I didn't have to live with pain. And living is what I'm trying to do.

New Treatment Approaches for May

I went to the Pain Clinic on Tuesday, where they were able to check out my MRI results and let me know about the new compression fracture, which explained the pain in my back.  The Clinic gave me a new prescription. This time, for Naprosyn, aka Aleve, three times a day, with meals. I had stopped the Celebrex last month after it, paradoxically, made my joints feel swollen. The last straw was when my knees felt weak going down the stairs -- if I fall down the stairs now, I'll end up in a million pieces! I went back to ibuprofen until last week's appointment at the Clinic switched me over to Aleve. It took a couple of days to make a noticeable difference, but it's working now. It makes it much easier to get up of the couch to get another cup of tea!

Further to the April test results, on Wednesday, my oncologist has switched me to chemo once every three weeks. They had previously been splitting my dose of Taxol over two weeks. As of last Friday, I was given the full Taxol dose in one sitting.   I was a little concerned that my side-effects would be greater, but so far they have been minimal.  On Saturday, I had the standard moon face with hot, red cheeks.  My stomach felt a little iffy Friday night and Saturday night, so last night I took my Stematil.  I was expecting to feel quite tired today, more from Lena's marathon birthday party yesterday than from chemo, but I feel well.  I'm moving around well, without pain.  Feeling steady on my feet. 

I'm having one of those moments when I feel "like myself" and it feels good.