Update 2/12/2015

February 12th, 2015 § 93 comments

IMG_9287Once again, it’s been a while since I’ve updated. Somehow most of you know that with me usually no news does not actually equal good news. Before I give an update I want to remind readers that I do update the blog Facebook page (click here to reach it) with short medical updates more often these days if you are interested.

Most of the last three weeks since I last wrote have been dealing still with swelling and blood count issues from radiation and from the extensive disease in my liver that we are working on with the radiation and with chemo. I’ve needed numerous transfusions of red cells for anemia and quite a few for platelets which have really come under attack. We have been taking a break from the Epirubicin and I got a dose of Faslodex (I had it last year as well in a clinical trial with a trial drug, this month I am using it with a daily pill, Letrozole). Rather than being cytotoxic chemos (traditional “cell-killers”) these are anti hormonal agents. We are just trying to let my body recover now for a few weeks.

Last week my abdomen grew and grew with fluid from the liver and overall inflammation. By the end of the week I had an abdomen the size I was when I was ready to give birth. The skin was painfully stretched. We needed to intervene. I went to urgent care for evaluation for a paracentesis (draining/”tap” of fluid). My platelets were too low. They transfused and I just made the cutoff. The process is pretty simple: visualize if the pocket of fluid is drainable (tiny pockets would not be) via ultrasound.

Three needles of increasing gauge are inserted to numb through to the pocket. A catheter is inserted and attached to a drainage bottle that has a bit of vacuum to draw out the fluid. Two and one half liters later we were done. It is a huge amount to see. I did have soreness at the site and discomfort from such a lot of fluid removal after. But this is a very common procedure with metastases to the liver (please, please remember: breast cancer that metastasizes to the liver is not liver cancer. Mets to the brain are not brain cancer. They are breast cancer cells that have moved in the body. There can be/are big differences in terms of prognosis, treatment, chemotherapy agents, etc).

Some patients only need a few of these abdominal taps. Some need them every few weeks depending on how chemo, etc. are working. Sometimes a drain is actually placed to allow a constant ability to remove fluid.

If you were following me last year you know I had a drain placed in my lung while in the hospital that accomplished something similar. I was fortunate to only need that one for a few weeks (I had already had a one-time tap on my left lung called a thoracentesis). For now there are no plans for a drain or other more serious interventions in my abdomen. Now that my potassium levels are holding steady we are using diuretics to manage the issue.

We are working on the plan for next week, it is likely that I will be going back to a chemotherapy called Xeloda (these are pills taken daily) for a bit because it is gentler on blood counts. I’ll update when we have a decision on that.

I’m weak, still unable to drive, or do much more than walk than to the bathroom or a car that is picking me up. I’ve had to adjust some things at home including bathroom rails and so on. Safety is most important and especially with very low platelets falls and any bleeding or injury risk is a serious concern.

I’m sure I’ve forgotten something (or things) but I do want to get this out today. I see snow out the window but I’m still focused on Spring. These hydrangeas in my room this week reminded me March is not far off.

Thank you to those near and far for all different kinds of support given this month with an extra shout-out to my wonderful team at Sloan-Kettering. If any of my doctors, nurses, or support staff there are reading this: you help make these tough days better. I value your care always.

Update 1/17/2015

January 17th, 2015 § 78 comments

Image 5Hi everyone… finally an update. I know I have been quiet. As you probably assumed, it has been a very difficult month. I finished whole brain radiation (and I needed to add the C2 vertebrae) and liver radiation a month ago. The brain and liver were two week regimens each but the start times were staggered so it took three weeks to complete. I was having trouble with my magnesium and potassium levels and those needed to be addressed. As a result I needed to be at Sloan-Kettering every weekday for more than 30 straight days between radiation and the aftermath. It was quite a schedule.

In the last few weeks my problem became swelling (edema) from inflammation from the liver radiation. My abdomen was shockingly distended and that was causing me trouble with discomfort and moving around.

I have had fatigue but it hasn’t been the sleeping-all-day form that I was warned might happen with the brain radiation. Fatigue encompasses more than just “tiredness.” For me the fatigue has been more weighted on weakness. I have had a lot of trouble walking and doing steps. I’ve needed to use a wheelchair at SK for a few weeks now. That shouldn’t last much longer as I get stronger to walk distances again. But on the bad days I couldn’t get more than down to the car for my ride.

I started Epirubicin for my chemotherapy a few days after radiation finished in December. It is dosed based on liver function so the dose has been adjusted each week as we see how my liver is doing post-radiation. I was able to get three straight weekly doses. This current week has been my “off” week; my blood counts are low from three straight weeks of chemo (to be expected in anyone getting it) so a week off is always given for the body to hopefully make enough the replenishment cells of different types.

The magnesium and potassium as of this week are finally holding with home management and no IV supplementation. A helpful tip: the low sodium form of V8 has huge quantities of potassium. Most people think of OJ or a banana to supplement. Only 8 oz of it contain 900 mg of potassium. I drink a few a day, just make sure it is the low sodium version though.

I’ve now tapered totally off the very low steroid dose I had been on for months. Steroids can make your legs very weak if you take them for an extended period of time so it is good to be able to remove them from the equation.

I only needed to go to SK for one trip this week. Diuretics have helped with the edema, each day I see and adjust the dose. I do not have pain beyond what is caused by the fluid around the liver. I do not take any pain pills and haven’t needed them during radiation. I have not had any headaches or neurological issues yet from the brain radiation which is probably due to the fact that my lesions were so small and the low dose of steroids. I am still winning a bunch of my Words with Friends games too! The last time I was able to leave the house to go somewhere except to go to Sloan-Kettering was Thanksgiving. That boggles my mind.

I think this week has been a turning point. I am hopeful the major acute radiation effects are waning. No clue what lies ahead with the delayed ones but I don’t focus on that. For now I will be working on strength (after being basically bedridden for a month) and trying to get more function back. It is a process.

If all goes well I will start a new chemo cycle next week. Radiation effectiveness can’t be assessed immediately so we will do preliminary scans in a few weeks. (I finished on 12/19). Each day is different and I can’t predict how I will feel. But that seems to be the way life will be for me now. I long ago adjusted to that.

I am grateful for all of the support and concern shown over the last month from you, I understandably wasn’t able to return many messages. This past month was really about just getting through. The energy I did have was spent making sure the kids were able to maintain their usual schedules and we made it. Friends who have helped with rides and meals: thank you.

The poppy photo above is from my garden a few years ago… I’m already anxious for Spring to get here. xo

Update 12/27/2014

December 27th, 2014 § 71 comments

IMG_9257Hi all, a short update.

I’ve finished two weeks of whole brain radiation (those two weeks had simultaneous radiation to my C2 vertebrae), and two weeks of liver radiation (one overlapping with brain, so all of this was 3 weeks of treatment). I have been overwhelmingly plagued with intense fatigue and other side effects (fatigue is the worst thing at the moment though).

I need to use a wheelchair when I go to Sloan-Kettering now. I’ve needed platelets and red cells once each in the last few weeks and have needed to be at Sloan for one half-day every weekday for the last month or so because my magnesium (despite daily infusions) remains critically low, which is a dangerous situation. My potassium has similarly started to be an issue as well. I get magnesium and potassium in addition to 1.5 to 2 liters of fluids as well each day because I have been having trouble staying hydrated with the radiation effects. Not enough energy here to go into why the magnesium is still an issue now.

Four days ago on Tuesday the 23rd, I began chemotherapy (4 days after finishing all of my radiation). We are starting a new drug called epirubicin which is an anthracycline just like the well-known adriamycin (it is also red like adriamycin).

So basically I’m spending a half day at MSK every weekday and resting (I’m basically bedridden right now) at home the rest of the time. I don’t leave the house except to go to MSK. I expect at least a few more weeks of this.

I’m thrilled that my family has gone away on vacation starting today and they will have a week to ski and be with cousins and grandparents and get a fun break while I recover here. I insisted that they go; it is so important for me to know that our kids and my husband can have some vacation time and get a break. It is not easy to be a family member/caretaker under these conditions so it gives me a lot of joy that they can have a change of scenery. I have a family member staying with me since I can’t be alone and so that will work out just fine in terms of appointments and help with my needs.

I get foggy quickly so I hope this post made sense!

Many thanks as always to those who support me daily with tweets, emails, rides to appointments, donations to my research fund, meals, etc. And to any MSKCC staff who are reading this: you know how much I adore you.

I am grateful that you all continue to join me here. Wishing you a happy and healthy new year if possible and we’ll keep on going into 2015 the best we can…

xo,

Lisa

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