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.
Link to Twitter
You are very courageous. My prayers and thoughts are with you. You’re writing is very helpful, thank you for sharing even the hard stuff.
You are one of the bravest women I know. In your willingness to be vulnerable, you shine a light for all of us to follow. Thank you.
I am so grateful to meet you here.
Thank you for sharing what you’re going through. Thank you for your honesty. Thank you for being you.
After an ankle surgery in 2008, for some bizarre reason I lost all ability to use my hands. I couldn’t sign checks or sign for deliveries of food. I ended up at an acupuncturist (in desperation) but couldn’t climb on his table. My hands wouldn’t hold me and I kept sliding off, taking that stupid white butcher paper with me! The acupuncturist didn’t seem to notice the psychic pain this was causing me, and by the 4th time I slid off the table I thought, “Is this guy BLIND?”
When I was getting dressed he said, “I’m getting you a handicapped sign because I’m not sure you’ll ever regain use of your hands in a proper fashion again.”
I did regain the ability to sign papers and checks. But my hands are weakened to the point that opening a jar is a joke. I also lost all feeling in the operated foot, half way up to my knee. You never realize how much you need a part of your body until you don’t have it anymore.
Lisa,
I think about you every day. You are facing metastatic breast cancer with grace and poise. Don’t think for a minute that I don’t know you break down in the shower and have moments of deep sorrow. It is very difficult living in this state of perpetual limbo. Please know your writing brings me comfort, hope, bravery and feelings that I am not alone in this journey.
Be Well~
another thing we have in common….no fingerprints!
thanks for the update. hope the HFS subsides a bit with the new dosage. xo
For those like myself, who mercifully have not had much experience with breast or other cancers, and therefore don’t know much about it, your blogs are an important source of information. Thank you for sharing the details of your experience and wisdom. My thoughts are with you for a quick and healthy outcome.
Your courage inspires me! Thank you for sharing.
You remain articulate and brave and eloquent and gorgeous.
Love you Lisa! Thanks so much for sharing in your blogposts – it is really helpful to understand what you are going through. xoxo!
I’m glad you posted this update. I’m sure that being straightforward about what you’re experiencing is a service to many in ways you may never know.
Meanwhile, I’m sending you wishes for relief from the side effects.
Thank you Lisa. It is important for us to know your symptoms so we can either show empathy for others or recognize our own symptoms early. With my initial chemo I shucked the skin on the soles of my feet. No one else I know had this happen. We still don’t recognize how thoroughly chemo effects ALL of our cells. Your wisdom and insight is helpful.
Thank you for sharing your experience with us. I am hoping that lowering the dose of the xeloda will help the HFS. I know that things are still swirling in your mind, there’s so much to take in especially at the beginning and please know that so many of us are with you all the way. Extra hugs and prayers coming your way! XoXoXo-Susan
Lisa,
I meant to write a congratulatory “Woohoo!” when I found out you’re writing for Huff Po. That is really cool! (Then I spaced out and forgot to comment.)
I do have a question which I would be interested to see answered but I hesitated to ask it because I have been concerned it would feel offensive or hurtful. I am asking because it seems like every day I hear of someone having cancer but have not yet had a person I am very close to with metastatic cancer, and I think it’s only a matter of time. My main experience of cancer is with canine cancer, and I was worried that referencing veterinary oncology would feel hurtful to you.
My question is about levels of chemotherapy. When my service dog had lymphoma, we did chemo (Elspar for induction and then alternating Vincristine, cyclophosphamide, doxorubicin to put him in remission and keep him there) at levels below which 90% of dogs experience side effects. A lower dose is used so the goal is not cure but to increase the length of survival time that is also good quality. My question is if oncologists ever do a similar thing with humans who have metastatic cancer — use a dose that’s low enough to make side-effects unlikely but to still slow the cancer and provide some relief from the symptoms of cancer? In other words, where lengthening of survival time is less important than reduction of symptoms and side-effects? I understand that different people may have different goals from chemo, and I wondered whether what I describe is available to people?
These are good questions. I should probably write a post on this but I do want to answer. That is what the goal is here: find the right balance of side effects that are tolerable with best chance at killing as much cancer as possible both to reduce pain and allow a longer life. The balance, as you say, is different for different people. Some want a longer life at any cost. Some don’t want chemo at all and just want to live treatment-free for as long as they are able. Some will do some treatments and then decide the side effects are worse than the disease and their time is pretty much over. These are very personal decisions that are made between an oncologist and patient.
Personally, I want to try to hit this as strongly as possible. I want to see what chemotherapy will work (no way to know) and how much I can handle/what the side effects are (again, lots of variation). So yes, just like in pets, there is a balancing act. The other issue is that in pets you look at what their life expectancy is and how old they are when diagnosed. It often doesn’t make sense to subject them to harsh chemo because they are nearing the end of their natural lives anyway. Similarly, humans in their 40s like me may make different decisions than people in their 80s. The body is more resilient at a younger age as well.
These are some of the issues. I hope this was helpful. Please follow up if you have more questions. Thanks for reading.
Lisa, thank you very much for your reply. I found it very clear, and it made a lot of sense. I feel some relief in knowing there are options.
I’m sure I speak for all of us following you here and on twitter. We’re in for the long haul…for the good, the bad, the small miracles, the bad news., the joys and the frustrations. If a particular blog post is too difficult for someone on a particular day…they’ll make the choice not to read that particular one…but they’ll be back.. We’re here for the real…whatever you WANT to share, share. Don’t edit yourself for us….if you are living it…we can certainly read it.
I popped over from Louise’s blog at http://ayearofmakingadifference.com Damn you feet look sore and I think those who go through chemo are amazing and oh so strong my dad went through chemo for lung cancer a couple of years ago and although he hasn’t had this type of problem it did mess up his feet they get so sore and he often has a lot of trouble walking and they are often cold even in the summer months……..
I am at a loss for words. Your courage helps so many people. I send you soothing coolness for your feet and hands and the wish that I could absorb some of this pain for you.
Thank you, Lisa. Sharing this on FB & with METAvivor.
Thank you so much!
I have never seen it so bad. You are brave. Don’t know why they don’t stop the Xeloda for good.
Why would I want to stop something that is giving me a chance at a longer life with good quality? It’s just about finding the right dose and seeing soon if the cancer is responding. This is one of the better-tolerated drugs. If I have to move on to something else, the side effects will likely be worse. It’s my fervent hope I can stay on this one for a long time, actually. I appreciate that you worry, but I wouldn’t let them stop it at this point. The one thing about metastasis is that you really get to call the shots. You make the decisions about what you can handle and what quality of life you want. I’m quite content with this and am focused on gathering the info we need to figure out if it’s responding.
Love reading your posts! Hang in there with the Xeloda. I have done Xeloda twice (in 2009 and again in 2010) and it worked really well for me. To combat the HFS I slathered my feet with bag balm (you may have to ask at the pharmacy but our WalMart carries it) and put on thick socks. I also rested my feet on ice packs when I could. It really helped. At night, I would put bag balm on my hands, too, and wear thin gloves. My onc reduced my dose to 6 pills a day (3 am and 3 pm) and it really helped and was still effective. I was a school teacher (am on disability retirement now) and was teaching full time. Spent lots of time on a stool or standing in my socks on the cold concrete floor. A few times I even taught with my feet on ice packs. Once I strapped them to my feet and “skated” around the room. The kids got a kick out of that one! 🙂 Hang in there!
I do ice packs at night and am the Queen of moisturizer! I am curious why you started, stopped, and started again if it was working. No maintenance needed? Are you still on it? Thanks.
I was on it in 2009 after Abraxane in 2008-09 and it got rid of the last of the liver lesions. (I am stage IV triple neg bc from diagnosis in Aug. 2008) – I did stay on it at a low dose until Sept. 2010 when I had a recurrance in liver and bones. Did carbo/taxotere in 2010 and when I became NED again in early 2011, I resumed a maintenance dose of Xeloda until I recurred again in Sept. 2011 (again in liver and adrenal gland and area near heart). Did Abraxane again and it again got rid of everything except 2 liver lesions which are stable so I have been on a chemo break since Aug. 2012. Find out on Tues. if I am still stable. It is nice to have the option of going back on something that worked well! Best of luck!
Lisa, one of our FB METAvivor followers suggested this search list of suggestions on bc mets.org: http://bcmets.org/archive/search?utf8=%E2%9C%93&q=xeloda+hand+and+foot&commit=Search
It also does appear that the trick is finding the dose that works well enough but dials back the SE’s. Another woman swears by coconut oil and socks in bed. 🙂
Hi Lisa,
First of all, I am going to be in the city on Tuesday (the 11th) and would love to meet up with you. I’m a member of the “MSK family” and I volunteer at the hospital, too. I’m just returning from San Antonio from the Symposium. I can meet you by the office. I’m guessing you will be on 53rd unless the onco is in the breast center?
I am all teary. I’m still on the plane. When I got to the photo (I knew what it would look like but still), it upset me. Just because……. Because of the whole #FearlessFriend thing and because I don’t want to add even one more person to my list of those for whom I am fearless and FIERCE.
MUCH love….
AnneMarie
PS-and please DM me on twitter or email me anncicc@gmail.com if you can/want to meet up for five minutes in the hallway. I am going to be in the city for a late afternoon thing. ((hugs))
Hi Lisa,
I’ve never commented here but have read all your posts since I found you on twitter, but I wanted to jump in to say that like some of the other commenters that I have found your posts beneficial to me, so please continue to share whatever you want. I am an IBC lab researcher, who was motivated to study IBC based on reading the blog of an IBC patient, who unfortunately passed away earlier this year before I got the courage up to comment on her blog. You just never know who your blog will touch whether now or sometime in the future.
Keep on keeping on!
Lisa, I am so sorry you are having such a hard time on xeloda. I too am on it and have been since August. Other than some slight dry skin around my heels and cuticles, I have not had any side effects. I too was on 8 pills a day until recently when it was reduced to 6 a day but only 1 week on, 1 week off. I also have to take tykerb since I am her2 positive. That drug and I had a bumpy start. Lost 18 pounds from severe diarhea and had to go off everything for a while. I restarted at only two a day rather than the five prescribed, and am now up to four which is great! I am so thankful for this because the alternative was to go on iv taxol which I am so against.
Hang in there. That’s all we can do right? Gain strength in knowing you are not alone and you have many people pulling for you.
Just echoing Kathy’s suggestion to check out BC.org: http://community.breastcancer.org/forum/8/topic/781957
Dearest Lisa, You are on my thoughts and in my heart. Worrying about how you are and sending you all my love and never ending prayers.