February 12th, 2015 §
Once 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.
September 30th, 2013 §
Here we are again. A crossroads.
The third of many we will have.
I’ll give a bit of a recap. I know it gets quite technical but documenting the details is important for those who also have metastatic breast cancer.
It’s almost one year to the day that I was diagnosed with metastatic breast cancer in my bones and lymph nodes. I started on the cytotoxic daily drug Xeloda first (in addition to monthly infusions of Zometa) which gave me six months of success, shrinking the amount of cancer evident on PET scans.
In April 2013 when my tumor markers started rising I started on the hormonal combo of Aromasin and Afinitor (and also switched from Zometa to Xgeva because of difficult side effects I was having). I started on a 5 mg/day dose of Afinitor with a 25 mg dose of the Aromasin. I gradually increased the Afinitor dose to 7.5 mg/day, and then when my markers began to rise again a few weeks ago, I started on 10 mg a day.
It has now been five months on this combo (in all of its different dose strengths) and my markers are rising. This chemo is no longer working. So, it’s time to decide what to do next.
Regular readers will know that this is typical of metastatic breast cancer: some therapies may not work at all while some will work for a while. Ultimately, though, the cancer becomes resistant to each of these treatments and will progress. Sometimes you get a great response and can reduce the amount of cancer that is present. Oftentimes you settle for the success of “stability” where the cancer isn’t reduced, but it also isn’t growing. It’s often referred to as hanging out with “Stable Mable.” This is still a good response in most people’s books.
Especially when your cancer is still confined to your bones and lymph nodes, stability has the added feature of being life-saving: as long as the cancer is in those places it cannot kill you. Only once it metastasizes to organs can breast cancer kill.
So… now it’s time to decide what to try next (this part gets technical). Right now it’s looking like I’m headed to a clinical trial of a drug that has shown promise in breaking the resistance of hormone sensitive breast cancers especially in people like me whose cancer displays a Pi3k mutation (40% of people with ER+ breast cancer have one of these mutations). This experimental drug would be in combination with a drug commonly used for my kind of cancer (Faslodex). I’ve enrolled with the clinical trial team. This is a Phase II trial so I would be guaranteed to get the experimental drug.
What does this mean? In simple English, it means I’m trying a new drug that’s designed to break the resistance of this particular kind of cancer to treatment. It seems to be especially effective for those with the type of cancer mutation that I have (Pi3k-alpha). If this drug makes the cancer susceptible to therapy, then the other drug I’m taking can do its work. This class of drugs is at the forefront of where cancer research trials are right now.
I’ve been pre-screeened and have a few more hurdles to clear: scans, bloodwork, and a three week “washout” period where I must be chemo-free to allow any residual effects of my current treatment to clear. Am I nervous about a period with no safety net? Yes, a bit. But I also am curious how my body will react to having current chemo clear my system. I’ve had a lot of trouble with things like high blood pressure, high cholesterol, rapid heart rate, shortness of breath, and headaches in the past few months. I’m interested to see how many of these will improve.
The new drugs will have their own series of side effects, some of them might be similar and a few may be different and more serious. So this three week period sits okay with me because if my current treatment isn’t doing anything anymore, it’s of no use anyway.
There will be so much to share about being involved in a clinical trial. And I will share that with you, should I make it through the final screening process. I am learning so much as I go and I think there is a real chance here to inform others about the experience. Trials are as varied as can be. Each has criteria that must be met. Sometimes you end up on the good side of these and sometimes you don’t.
My oncologist looked at a host of trials before we chose this one. I was ineligible for many of them because of the drugs I have already tried, my particular features of my cancer, what cities the trials were offered in, when they were enrolling patients, etc. Some were not attractive to me because of the phase of trial that it was (I’ll explain in a separate post the differences between Phase 1, 2 and 3 trials). I am glad to be in a trial where a drug has already passed initial safety standards and will also be given to every patient in the group (there are no placebos in this phase of trial).
It’s important to note that a clinical trial should not necessarily be viewed as a “Hail Mary” meaning it’s the last remaining hope. In reality, my sense is that this is very rarely the case, at least with Phase 2 or 3 trials. They can only establish true efficacy in people who are still at certain phases of the disease process and haven’t had too many chemotherapy agents already.
To me the key was to find a trial that had a good scientific basis for success, was currently enrolling patients and was within commuting distance. In addition, I think it’s best if the standard of care drug is one you would already be considering using at this point in your treatment. There is a database at www.clinicaltrials.gov where you can search for trials.
I have reserved my spot in this trial. If I meet the testing criteria I will be one of 60 patients nationwide on this particular protocol, about 10 at my particular location. I view it as an opportunity. It is well-suited for my cancer at this time in treatment. It’s using the newest thinking in targeted therapy based on genomic analysis.
It’s scary, yes. But if it doesn’t work I still have standby treatments to go to (and other trials by that time that I hopefully would be eligible for). I know there is no cure. But maybe this one will give me a chunk of time.
I won’t go into details here but I know people will ask what’s involved. The treatments will be injections (Faslodex is two big intramuscular injections in the butt every month after doses every 2 weeks the first month) combined with daily oral capsule (the experimental drug). I will also continue to get an Xgeva injection in the arm each month. There will be a strict schedule of fasting bloodwork in NYC every two weeks and scans every 8 weeks to monitor the cancer’s growth. I’ll have to keep a medication diary. I’ll let you know how everything else works once I am underway. It’s a lot of work, especially in the first two months including all of the meetings and tests just to get started.
There are so many questions I know people will have. If you post your questions in the comments I will do my best to answer them in future posts if I can. You may post them anonymously if you like. For now I’m not going to state the name of the drug (actually just a string of letters and numbers) until I’m actually enrolled.
It was quite devastating to get the news that the current chemo isn’t working anymore. It always feels like the rug being pulled out from under me. I always cry. I always feel like I’m falling.
But plans are my safety net. Options are my lifejackets.
I leap from treatment to treatment on my tippy toes, knowing if I place too much weight I will sink.
This is the dance I do now. Forever.
April 12th, 2013 §
I want to just send out a quick clarification about my chemo because I can tell from messages I’m getting that I didn’t explain well what has happened with my discontinuation of Xeloda. This particular chemo is now failing, yes. But that doesn’t mean it didn’t work. This is part of this disease of metastatic breast cancer. In some cases the treatment option never works; that is, your cancer doesn’t respond at all. You get no benefit from day one. You abandon it quickly.
Mine, however, falls into the other camp: it did work for a period of time. It did what it was supposed to, just for not as long as we’d hoped. That is, it did reduce the amount of cancer in my body for a while, it did hold progression at bay.
It’s no longer doing that, my counts are very slowly rising, but that doesn’t mean it “didn’t work.” It just means it didn’t work for as long as I would have liked.
Most people with advanced disease will be leapfrogging around all sorts of agents (chemo, anti-hormonals, etc.) to try to see what works. The cancer mutates and becomes resistant to most treatments that will get used. That’s when it’s time to move on to a different one. I know people that have been on at least ten different agents. That leapfrogging is just the nature of the path many others and I are on. A small percentage find one that works and it continues to work for a long, long time. Research is needed to find out why these particular cancers are more easily tamed. We do not know now why that is the case but researchers are learning more and more about the subtypes.
So while the stability was not as long as we’d liked, in this particular case it doesn’t mean it didn’t work. It did. For six months. But now we’re moving on.
In my case, because my cancer is estrogen-receptor positive, we’re trying anti-hormonal agents. Although I don’t have ovaries to produce estrogen, the fat cells and adrenal glands in my body still produce estrogen. I will be taking two drugs every day now, Aromasin and Afinitor. The plan is in place and I’m already starting taking them, slowly on the Afinitor because it has a side effect of bad mouth sores if started at a full dose. I won’t go into other side effects here because I don’t know yet what my particular response will be.
Thanks for all of the notes of support and concern over the last 48 hours during the PET scan and this new adjustment. As always, I can’t respond to every message but I do appreciate them all.
April 11th, 2013 §
A quick update. I’m sorry to say that my hand-wringing and concern in my last post were met with unfavorable results yesterday. My tumor markers were again slightly higher. In and of itself (an isolated rise) it would be acceptable. But this has been a trend for long enough that it’s evidence my current chemo has failed. Goodbye Xeloda. I’m sorry to see you go. I’d hoped for longer than six months on it for sure.
I’ve got a PET scan early this morning (Thursday). It is being used as much to see how much progression there is as to be used as a baseline before starting the next treatment.
I’m still talking with my oncologists about what the next treatment should be (options include oral anti-hormonals and various IV chemotherapies). Whatever I choose will be ripe with new side effects and demand monitoring. My hands will improve; much as I am happy about that, I am truly sorry to see the Xeloda go. I think you always want to hope that the first thing you throw at this disease will keep you stable for longer than this. But, the Xeloda did good work for six months. But we knew this day would come: on to the next.
I am glad there are still things to try. But of course, for now, I’m sad.
I’m still grieving and angry and all of those emotions. But I’m also learning new skills of compartmentalization and recovery. I move forward, I move on, I live. There is no choice. I change treatments and see what I can get from it. My life has become a puzzle shifting pieces; we move and mix them around until they fit. That fit won’t last, but hopefully it lasts for a while.
Do not be concerned if you don’t see a post for a bit. I’m going into research and decision-making mode. I appreciate all of the support from everyone. I know that if hopes and wishes and hugs could cure my cancer I’d be healthy for sure. I can’t acknowledge all of the messages right now and even the thank you notes for Tristan’s birthday party are sitting half-done. For now this is what I am focusing on and being every bit the mom and wife that I can be at every other moment.
March 28th, 2013 §
Limboland is part of stage 4 cancer. On a daily basis I don’t know what’s happening inside my body. I often think about the cancer cells and wonder what they’re doing. Are they dying? Multiplying? It would be so nice to have a reliable blood test to easily and accurately measure how many of them there are at any given time. But these tests do not yet exist for us.
My CA 15-3 test again showed a slight elevation from two weeks ago. The numbers have been bouncing around over the last few months (expected) with a slight upward trend (undesirable). It’s hard to know what this means. A few points here and there are not cause for alarm. This volatibility is inherent in this test (which is why some oncologists don’t do this test at all, and why it can’t be used as a screening device. Also, in some people the test doesn’t reflect changes in the amount of cancer present at all). So… it’s a bit to me like trying to juggle Jello.
Of course I want to walk in and have my number be lower than the previous time. But that’s not always possible. With the exception of my hands I’ve felt good for the last two weeks. I’ve been in a frenzy of activity this week with Tristan’s 7th birthday this weekend (more about that in the next few days) and lots of activities with the kids. How I feel is important; while blood tests can show how my counts are, lack of pain in new areas is good too. I received my monthly injection of Xgeva today as well.
I’m back at Sloan Kettering next week and Dr. Dang and I will huddle and strategize. Today my local oncologist and I talked about some ideas about how to treat this test result and what it potentially really means. Right now it seems we are in watchful waiting (not that there is anything new about that). As of today no repeat PET scan is scheduled. We will see if that decision changes next week. My prediction is we wait two more weeks to see where the levels are then and re-evaluate at that time.
Chemo starts this Sunday. I’ve been doing the maximum recommended dose for 5 days, and a slight decreased dose for 2 days. I think this time I’ll be pushing to the maximum dose for all 7 days. It’s hard to know what price I’ll pay for doing so, especially during a very busy week next week (Sloan appointment and then another gig on the Doctor Radio Oncology Show on Wednesday at 1 PM which I hope to attend in person). My hands are my biggest issue, this is just what happens with Hand/Foot Syndrome. I continue to treat my hands with all sorts of products and care, but the truth of the matter is that this is what Xeloda does when it is taken and leaches out of the capillaries. The only true remedy is a decreased dose or discontinuing it altogether. That’s not in the cards right now (thankfully).
It is always hard to hear news that’s not what you want. I’m sure some people would be filled with anxiety and upset after this type of news. I like to give myself a ten minute pity party and then get on with life. If I give myself up to worry and dread for the next two weeks, what have I accomplished besides ruining two precious weeks of my life? Instead I went to the grocery store and stocked my house with food for the long weekend. I came home and played with my new dog (sweet Lucy is especially lovable in times like this).
I am a role model: my children are watching how I handle all of this. Raising polite and kind children is not enough. My children’s mastery of resilience is as important as any other life skill I can teach them. If I become debilitated by anxiety, don’t pick myself up and press forward, I am teaching them a lesson they do not need.
It’s okay to be emotional or upset at bad news. Complete denial serves no one. Acknowledging emotions of anger, sadness and fear but still displaying strength, stamina and persistence is what I try to do.
I hate the turn my life has taken. I hate that this is what is happening to my family and to me. For now, though, I continue to focus on all of the things I can do, and am doing. I pour my heart out on this screen. Some people think I must be depressed all of the time if I have these dark emotions evident in my posts. I can assure you that this is not what I am like all the time. Those feelings exist, and are important. I wouldn’t be human if I didn’t have them. It’s important to get them out not only for my own well-being but also because I know many readers with cancer tell me I’m speaking for them.
So, it’s not what I wanted, but I’m not sounding the alarms. We watch, we wait, we treat. I consciously do the best I can every day. Some days I do better than others. Some days I have a short temper and take my anger at cancer out on my husband or my kids. I’m not perfect. I apologize to them. I tell them I’m trying my best but sometimes it just breaks through. They see that I am human too. I make mistakes.
I draw strength from you all every day. Thank you for your support.
January 31st, 2013 §
I always think these updates must be boring to read. I know they’re necessary, and important. I know this is how most of you get the nitty gritty details on my treatment. Somehow, though, I always wonder if they are actually educational or if they are too technical. So, that’s why I try to limit them to about once a week or when there are changes. My goal is to show you how these decisions get made (in my case only). Some cancers have very specific and formulaic treatment schedules. Metastatic disease often does not. It’s unclear which drug(s) will work and for how long. It’s never known how a patient will tolerate the drug initially and cumulatively as time goes on. The patient has a lot of leeway in many of these cases. There is no blueprint. A good team has communication about options and constantly revises their strategy.
I had this week “off” from chemo. The last few days I’ve felt very good. I have been spending lots of time with our new dog, Lucy, who has brought joy into our home in so many ways. We just adore her.
I was at Sloan Kettering last week and today I met with my local oncologist. Fortunately everyone in agreement after a review of all of the options. One of the things that’s always a concern is quality of life. My doctors are very keen on making sure I am comfortable and able to do things I enjoy. The balancing act of aggressive treatment to extend life without sacrificing too much quality of life is an integral part of treating metastatic cancer. There is no cure. But the goal is holding off the inevitable as long as possible.
I’ve had lingering trouble with the monthly IV bone drug Zometa. Some readers suggested I ask about the other available drug Xgeva, a subcutaneous injection also given once a month. They anecdotally reported fewer side effects. Both of my doctors do not believe Xgeva actually is better for my needs cancer-wise than Zometa, but also agree it’s not worse. One option was to try an IV steroid infusion of Decadron immediately prior to the Zometa to see if it helped with side effects. The other option was to try to the Xgeva and see if I had any side effects from that (most people report fewer to no problems with it, though most also do not have problems with Zometa after the first one or two times). I’ve opted to try the Xgeva. I would usually have gotten it today (28 day interval) but I have plans this weekend that are very important to me. I don’t want to risk being ill and having to cancel. It will not be a problem to get the injection on Monday, so I will postpone it for a few days. We’ll see how I tolerate the Xgeva shot and go from there.
My tumor marker number stayed relatively constant after that small increase two weeks ago. This is good, but leaves us in a bit of a quandary. We aren’t yet at the point of doing a repeat PET scan. The rise is not enough to warrant that, though we will do it soon. Neither is the increase enough to assume the chemo has stopped working after initially being responsive. We don’t know, as I said in the last update, if it’s an anomaly or a trend. The only things that can show us are more data points. I happen to like data points. I like seeing what happens every 2 weeks even if it means more of an emotional rollercoaster. We are only 4 months into this and I don’t feel that we have a handle on how I’m responding yet. Only time can shed light on that. I did have a good initial reaction to the drug which was encouraging.
So… since we’ve achieved a good decrease in the last 4 months with the Xeloda but now that is slowing down and I seem to have “bottomed out” on its efficacy, what now? We want to keep everything where it is. If we can get more of a decrease, that’s the best. If not, we need it to hold steady. We all agree it’s time to try again to increase the chemotherapy dose and see if I can both tolerate it and get a stronger marker response. I started at 8 pills a day in the beginning (for about 2 months) and had to decrease about two months ago to 7 pills a day when side effects became intolerable.
It’s time to walk into the fire again. There is no manual for how to do this. We all brainstorm, we talk about what my goals are, we talk about what makes scientific sense. The idea this time is to increase, but not go back to the 8 pills for the whole round. Instead, to try to get more chemo in my system, I will alternate 7 and 8 pills for the week. We’ll see how I do. Debilitating nausea, stomach pain, hand/foot syndrome, and migraines have been my issues with this drug in the last month.
Also, I will change my start day. Thursday night was my usual. Lately, however, I’ve felt rotten on the weekends (both weekends this time around, as effects often last into day 10 or 11 which technically are “off” days for me). I will now start chemo on Saturday night or Sunday morning and see if we can shift my “rotten days” to weekdays instead. I want more quality days with my family on weekends if I can get it.
This is all educated guesswork, a constant dance of drugs and schedules and side effects and efficacy.
There is no manual.
There is no “must.”
There is only me, floating away, trying to grasp the fingertips of treatment and hope.
January 23rd, 2013 §
First order of business is a late reminder that today (Wednesday) I will be on Doctor Radio on SiriusXM 81 from 1:00-1:30 EST on the Oncology show.
I’ll be talking about my first diagnosis of stage II cancer and then my recent diagnosis of stage IV metastatic cancer, my blog, and how to improve the doctor-patient relationship. You can call 877-NYU-DOCS if you want to ask questions! We will be live for that time period. You can even email questions in during that time (or even before, just send them to firstname.lastname@example.org and say it’s for me on today’s oncology show). The half hour will go fast I’m sure. The taped show will then repeat tonight at 11 pm. I think you can go here to listen for free for a week if you want to listen in today: http://www.siriusxm.com/freetrial
I had intended to be posting each day this month but this weekend caught up with me. In the negative column, side effects from chemo this weekend were worse than usual. The nausea was the most debilitating one. Two out of the three weekend days were pretty much lost. As a result I could not get posts up. I am sorry about that.
However, these negatives were overshadowed a million times over by the other reason I was too busy to be writing. The photos you see are of the new addition to our family. Lucy is a two year old Pembroke Welsh Corgi that came to live with us on Sunday. She is a sweet and loving dog, and has made the adjustment to her new home seamlessly. My children (14, 11, 6) have fallen head over heels in love. Paige knew we were getting her but the boys were unaware… I loved having a surprise for them. I’ll write more about that soon.
We thank Gaye and John Georges at Calista Corgis for raising this beautiful dog who is a treasured part of our home now.
I’ll include a few photos and then be back this week finish out my month of revisiting some of the most-requested old posts. Yesterday I was at Sloan Kettering talking about side effects, PET scans, and tumor markers. As always, my doctors are very thorough and I always leave with more information about options and perspective. I was also able to share with Dr. Dang that with your generosity we’ve raised over $15,000 in 3 weeks for metastatic breast cancer research on my Sloan Kettering Giving page.
Thanks to all for your support this week.
December 12th, 2012 §
Tuesday’s visit with my oncologist at Sloan Kettering was informative, as always. However, the big question can’t be answered: what is the trajectory of my stage IV cancer?
There will be no answer to that for now.
We start with a chemo. We see (through bloodwork and PET scans) how the cancer responds. If it responds, I stay the course until the treatment stops working or the side effects become untenable or dangerous. There is no way to know how long that will be. Any particular chemo could be ineffective from the get-go. It could fail after months. It could fail after years. Then you go to the list of options and decide on a next chemo regimen. This decision is not always easy; you can’t know which one will be best for you. It is often educated guesswork at best. There can be many chemotherapy options and in the end, I will probably try many/all as each one eventually fails. I’ve talked to women who have gone through more than eight different chemos in the treatment of their metastases. One thing I know is that chemotherapy in one form or another will be a part of my life for the rest of my life.
There is also no way to know if you will tolerate a chemo regimen well. Side effects can be dangerous and variable. Sometimes side effects are serious enough that you must discontinue using a particular drug even if it’s effective in reducing the cancer. As you can imagine, this can be a heartbreaking proposition: find something that works but you are unable to take.
As you know from my last post I have been struggling with HFS (Hand/Foot Syndrome) from the current chemo, Xeloda. I had done some research and found some studies indicating that the selective COX-2 inhibitor and anti-inflammatory drug Celebrex has been used with some success in helping reduce the severity of HFS in patients taking Xeloda (and a few other specific chemos). I had reduced my daily dose of chemo from 4000 mg to 3500 mg for this 5th round (7 days on, 7 days off) to see if the HFS improved with a slightly lower dose. Of course it’s scary to reduce the dose of your chemo but I’ve tolerated the maximum dose for a good number of rounds. It’s normal to need to reduce the dose as time goes on.
My oncologist agreed that the Celebrex was a good thought and definitely might help the HFS. There are risk factors associated with the use of the drug but we both agree that it’s worth the small risk. So I am starting with 200 mg once a day to see how I tolerate the Celebrex and if a low dose helps I will stay with that. If needed, it can be increased to 200 mg twice a day. My hope is that the Celebrex helps the HFS and allows me to go back to the higher 4000 mg (8 pills) a day chemo dosing for the next round.
In the meantime I continue with frequent moisturizing of my hands and feet (at least 10 times a day) with a variety of lotions including shea butter, Eucerin, Aquaphor, and more. I stay away from water, do not apply heat on hands/feet, wear socks and soft shoes/slippers, and wear gloves as much as possible. My feet have been doing very well, my hands holding steady and actually do seem improved today. Here’s hoping!
I know this was a technical discussion today but I want to share it for other people in treatment who might be able to ask their doctors about Celebrex if they suffer from HFS with Xeloda. I also hope that the explanation of chemo and prognosis will be informative.
I continue to do as much as I can everyday and when people see me and say, “You’d never know what you’re going through right now,” I take it as a compliment. I was busy today with routine dentist and endocrinology appointments… you can’t ignore the rest of your body when you are treating cancer. Many other body systems will be affected by the cancer and chemo. My thyroid has been holding steady but shows signs of needing another medication adjustment. Bone treatments like the Zometa infusion I take can cause problems with jaw bones. It’s important to keep a watchful eye on your whole body and not use cancer as an excuse for ignoring routine checkups. That’s my loving nag for the day… stay vigilant with your healthcare appointments and thanks for all of your support.
December 8th, 2012 §
I realized it’s time for an update… but confess I’ve started and stopped this one a few times. Somehow when things are going along somewhat easily it’s easy to do the updates.This is the first one I’ve had to discuss side effects and I hesitated a lot about what to write and whether to post it. I wasn’t sure about talking about these things lest they be seen as complaining. My goal has always been to educate and inform above all.
Friends on Twitter assured me that talking about the daily in and out of chemo treatment for metastatic cancer is important. Not only are they learning what it’s like, but it tells people what I’m dealing with and what activities might be hard for me on a daily basis. One Twitter follower also said that for those who have family members with this disease and might not be forthcoming with detailed information, some of these updates give them an idea of what it might be like for their loved ones. While treatments and surgeries vary so much, I thought this was an excellent point.
I also have decided to post this information because I know other metastatic patients will find it through search engines and maybe it will help them. So… I’ve opted to continue to share these things. It’s the reality of cancer. It’s the reality of MY cancer.
I’m struggling at the moment with Palmar/Plantar Erythrodysesthesia or Hand/Foot Syndrome (HFS). This is a common side effect of Xeloda, the chemo I am currently taking. In short, the capillaries in the hands and feet rupture and the chemotherapy spills into the extremities. Redness, swelling, burning, peeling, tenderness, numbness and tingling can accompany it. While it does not always start right away, once you’ve had a few rounds it’s likely to be a cumulative effect.
After receiving another monthly IV infusion of Zometa to strengthen my bones on Tuesday, I started a new round (#5 for those of you keeping track at home) on Thursday night, and had to decrease my dose slightly to deal with the HFS. Rather than 8 pills a day (4000 mg) I’m on 7 now. The hope is that the HFS will stay at its current level and not progress on this dose. This is what feet start to look like with HFS:
It can get much worse than this with blisters and ulcerations but mine is not at that stage. If it were to reach that point we’d have to stop chemo until it healed and then re-introduce it. Driving was one of the hardest things yesterday, the pressure from the steering wheel (or anything against my hands) was difficult to tolerate. I wear cushiony gloves most of the day now and follow all of the guidelines to keep it at a minimum. My hands are more sore and sensitive than my feet this week but not as red as my feet. Thankfully while I could not hold a pen during most of the day, I could still do some typing. A long-term side effect of this particular drug is the potential to lose your fingerprints. I see an episode of CSI coming on that one! An article about the difficulty traveling with such a condition appears here.
Loss of appetite continues to be an issue but my weight has stabilized after a 20 pound loss in the first 6 weeks. It’s weight I needed to take off anyway, actually. I must eat twice a day when I take chemo and once I start eating I usually do just fine. I do better eating in the evening. My blood counts remained fine even during the weight loss and my instructions have been to “keep doing what I’m doing.” The one thing I can’t do is exercise at the moment. Friction on my feet can exacerbate the HFS so for now it’s not happening. A soon as the rib in my shoulder heals I will be trying to get back to Pilates class.
I’ll be back at Sloan Kettering on Tuesday, 12/11 to meet with my oncologist. We’ll evaluate the HFS by then and talk about ways to help me deal with it and make me more comfortable. We will also then be talking about what dose I will take for my next round and also start talking about when my next PET scan will be.
That’s the update for now, I’m still doing everything I can and am out and about as much as possible. I still bring the kids to the bus in the morning and try to do errands like the grocery shopping as often as I can. I ask for help with things that really are tough on my hands like stuffing the holiday cards or doing laundry or dishes. Even small tasks give me a sense of accomplishment and normalcy so while the weather holds I continue to do them. Once ice and snow set in and my concerns about slips and falls and bone breakage rise I will get help with more of the outdoor things.
I’ll have more pieces coming out on HuffPo shortly; thank you all for the excitement and congratulations about that new venue. My piece about what to do as soon as you are diagnosed, especially in regard to children, will be the next one they post. After that I’m looking at writing on the topics of bravery/inspiration, the situation when people you barely know take your condition as seriously as if they were family members, and the story of how I found out I had metastatic cancer to begin with. If you have any topics you’d like to see a piece about leave a comment or email me via the contact form and I’ll definitely take it into consideration!
Thanks for all of the support this week.
November 30th, 2012 §
Good news first: I’ve been asked to be a blogger for the new Huffington Post section called Generation Why which focuses on young people and cancer. At first I had to look to my left and right and ask, “Me?” because I haven’t really thought of myself as young in a while. But certainly issues facing people like me with cancer can be unique. The necessary pushes and pulls of being social for my children with the always magnetic desire to just be alone will be one theme I will write about for sure. A friend commented that he was “impressed” I was writing for HuffPo… I will have to remind him that Jenny McCarthy does, too, so it might not be as impressive as he thinks!
That said, I’m very pleased to have a wider audience for my writing. I hope the readers and commenters will be as nice as you all have been. The first post should go up this week and I’ve decided to have them use this week’s post “Alone” as my inaugural piece because the response to that one was overwhelming. I might as well start with a bang! I hope that piece will be one that represents my perspective well.
So.. the bad news is not terrible, but here is the latest news. While I started with very good tolerance to the 4th round of chemo, the end of the round ended up bringing hand/foot syndrome (palmar-plantar erythrodysesthesia) from the Xeloda. Hand/foot syndrome is not the same as neuropathy (though it may include some of those symptoms), which many people on chemotherapy experience.
Hand/foot syndrome is associated with a few particular drugs, Xeloda is one. The capillaries in your hands and feet leak and/or rupture, causing the chemo to spill into the extremities. This causes them to be extremely red, swollen, painful, sensitive to touch, cracked, peeling, and potentially ulcerating. Numbness and tingling also accompany the condition.
For the past month I’ve been trying to keep these effects at bay, but eventually the toxicity builds up. Fine motor activities like tying shoes are hard at the moment, anything that touches/puts pressure on hands and feet. Thankfully I have some shoes with furry insides and cushioning. Socks must be worn 24/7 and slippers at all times. Holding the steering wheel is uncomfortable but doable, thankfully. So many people have suggested I should do something relaxing like go for a massage or manicure/pedicure. Unfortunately between the broken ribs and a “no touching” order for hands and feet these things will have to wait!
I had to skip my last dose (there are 14 in each round right now) of chemo yesterday to prevent a flare. The plan will be to reduce the chemo dose to 3 pills in the morning and 4 at night next round to see if that will be enough of a reduction to stop the progression of the syndrome. If it isn’t, we’ll reduce again. The reduction in dosage is not rare. My understanding is that tolerating 4/4 for 7 days on and 7 days off for more than a few months is pretty unheard of.
I’ll have bloodwork on Monday, December 3rd and then meet with my local oncologist on Tuesday the 4th for a strategy meeting and check on the hands and feet. I’ll also receive my monthly IV of Zometa for my bones at that time.
Tomorrow (Saturday) sometime between 7-8 AM I’ll be on Robin Kall’s radio show which streams at www.920whjj.com. Stay in your PJs and join us! I think it will be after 7:15 sometime as the 2nd segment.
Thanks for the continued support and I’ll have a more creative post this weekend.