Keep On Keepin’ On

My PET scan results were better than expected. Despite a lot of active cancer lesions in my bones, things aren’t much better or worse and so we call that “stable” and consider it a victory. I should feel happier about it, but I’m just so tired it’s hard to feel anything about anything. The PET showed inflammation in my stomach which explains why I feel nauseated all the time, so we’re going to try a double-dose of Prilosec to see if that helps. But for the last several weeks I’ve just felt so crummy. . . I hope things get better.

Everyone keeps asking me about my plans, where I’m going on my next trip, etc. But right now I don’t have the energy to even think about all that. I don’t want to try to travel when I just end up sleeping through the trip. Maybe in a few weeks I’ll be able to get excited about making plans.

The truth is that I’m disappointed with the TDM-1. I should be happy that it is keeping things stable. But I went through so much just to get this drug, and I believed all of the hype about no side effects and how “easy” the treatment was. Now that I’m in it and dealing with the side effects, it’s just not that easy. And when I feel sick all of the time and I can’t enjoy going out to eat or traveling with friends, I start to feel depressed. I’ve lost 20 pounds since starting this drug just because food tastes awful. The fatigue makes doing simple things so difficult. And yet I’m so bored with lying around the house. I’m frustrated, but too tired to do anything about it.

So, the hope is that I can get rid of the nausea. Then maybe once I can start eating more, I can have more energy to do things. And once I’m outside doing things, maybe I will feel even better and can start planning events and trips and such. Finn and Piper need some adventures!

Good article in New York Magazine

It’s a long article, but does a good job of looking at the pink ribbon culture, the focus on early detection, and the myths of mammograms and self-exams. It cuts to the chase here in a section that quotes my online friend Ann.

One hundred and eight American women die of breast cancer each day. Some can live for a decade or more with metastatic disease, but the median life span is 26 months. One afternoon I talked to Ann Silberman, author of the blog “Breast Cancer? But Doctor . . . I Hate Pink.” Silberman started writing it in 2009, at age 51, after finding a lump in her breast that turned out to be cancer — a Stage 2 tumor, which she was told gave her a survival rate of 70 percent. At the time she was a secretary at a school in Sacramento, happily married and the mother of two boys, ages 12 and 22. Over the next two years, she had surgery, did six rounds of chemo, took a trio of drugs including Herceptin and, finally, thought she was done.

Four months later, a backache and bloated belly sent her to the doctor; the cancer had spread to her liver. Why didn’t the treatment work? No one knows. “At this point, you know that you’re going to die, and you know it’s going to be in the next five years,” she told me. Her goal is to see her youngest son graduate from high school next June.

It isn’t easy to face someone with metastatic disease, especially if you’ve had cancer yourself. Silberman’s trajectory is my worst fear; the night after we spoke, I was haunted by dreams of cancer’s return. Perhaps for that reason, metastatic patients are notably absent from pink-ribbon campaigns, rarely on the speaker’s podium at fund-raisers or races. Last October, for the first time, Komen featured a woman with Stage 4 disease in its awareness-month ads, but the wording carefully emphasized the positive: “Although, today, she has tumors in her bones, her liver and her lungs, Bridget still has hope.” (Bridget died earlier this month.)

“All that awareness terminology isn’t about us,” Silberman said. “It’s about surviving, and we’re not going to survive. We’re going to get sick. We’re going to lose parts of our livers. We’re going to be on oxygen. We’re going to die. It’s not pretty, and it’s not hopeful. People want to believe in ‘the cure,’ and they want to believe that cure is early detection. But you know what? It’s just not true.”

Read the full article

The Kadcyla 48

Now that TDM-1 has been FDA approved, it’s been named “Kadcyla.” I wonder how they come up with these names. No one knows how to pronounce it, so we’ve started calling it “Godzilla.” And sometimes it feels like a giant ape monster! After my third dose I’m figuring out side effects and such, which is great because it can help me with planning my days.

48 hours after infusion, Friday afternoon, I feel like I have been hit hard by the flu. My whole body hurts and I do not want to move. I get the chills and crawl into bed with a ton of blankets and then try to get the dogs to lay on me to get me even warmer. I feel queasy and food sounds awful. I can’t really sleep, buy I lay there and listen to the television because the idea of opening my eyes and watching seems like too much work. By Saturday night I’m sweaty and hot, laying on top of the bed and wishing the dogs would get off of me. By Sunday things are better, but I feel weak and tired and while foods sound good, by the time I get around to making/getting them they don’t sound good anymore. By Monday I will feel totally fine and get almost three weeks of “normal” before going back to infusion. 

Two days of yuck every 3 weeks is nothing. Easy peasy. And now at least I know and can plan for the weekends when I know I’m going to feel bad. Unfortunately, the next round I will be going to Palm Springs on the day I feel the worst. Traveling and airplanes. . . ugh, it’s going to suck. But at least I’ll get to spend some time in the sunshine and feel good the majority of the time that I’m there.

I’m looking forward to an pretty quiet week around here. I have two dogs staying, both are sweet and Piper loves playing with them. No big plans, so I’m going to rest and enjoy time with cute pups. Thank goodness for Amazon Fresh, which is delivering not only groceries but also gifts I needed for today and never felt good enough to go shop for. Home delivery is the best!

I don’t want to jinx it, but. . .

So far I think the TDM-1 has been really easy. Now it’s hard to say because I’ve only had 2 doses and each time I had port surgery 2 days after. And there was a hospital visit due to a pulmonary embolism thrown in there, too. So it’s hard to say what is a drug side effect and what is from other things. But I had my new port installed Friday and felt pretty crummy over the weekend, but today feel almost back to normal. The kind of normal I felt before all this chemotherapy crap. I did not take a nap today and didn’t need one. I ate whatever I wanted and it tasted like it should. My hair is almost to my shoulders. If you saw me, you’d never know I had cancer.

The only weird thing happening to me is crazy intense thirst. I am drinking about 30 cups of liquid a day, and that is while trying to slow myself down. My bloodwork is good and my onc says it’s not a problem, but I feel like it is. I’m not getting any good sleep because I am waking up every hour or two to pee. It’s crazy. But I am hopeful that this will regulate itself soon.

I’m past the 3-year mark now, which is great. But I am starting to see the effects cancer and chemo have on a body long-term. The PE put me back on blood thinners again, which I am injecting into my abdomen every night. I hate hate hate it. It hurts and about half the time it leaves an awful bruise that takes 2-3 weeks to heal. This is one from about 7 days ago:


Isn’t that lovely? Ugh.

So, I’m on the new chemo and my new port is in. Time for things to normalize a bit. I’m completely booked with dogs this month and next. Piper is almost all grown up. She and Finn make me laugh every day and are so affectionate. I have really amazing friends and family helping me when I need it. Life is good. I want to stop and notice– and enjoy every minute of it.

Adios, Navelbine.

My latest PET scan shows a few new spots in my bones and the older spots are more active, so it’s time to move on. As part of this clinical trial, now that I’ve had progression I’m allowed to move to the other arm and start taking TDM-1, the trial drug. This is what I wanted to do months ago, I guess I just had to take the long way around to it!

I don’t know the details yet about when I’ll start, they may ask for a waiting period so all of the Navelbine is out of my system. So, what is so great about TDM-1? Well, large clinical trials have shown that folks on TDM-1 have no progression for an average of 9 months rather than the 6 months of Tykerb/Xeloda. Overall survival of patients who took TDM-1 was 30 months compared to 25. These numbers seem small, but they are actually big news in cancer treatment. Dr. Gralow has patients who have been on TDM-1 for years. YEARS.

Dr. Gralow tells me that there are really hardly any side effects. This is, of course, not the story you hear from women on the message boards! Funny what doctors think is no big deal can be a very big deal when you are the one living with it… But, there is no hair loss and very little nausea. Most women report fatigue, aches, cramps in hands and feet, low platelets, etc.  There are a few women who have posted about being really sick 4-5 days after infusion. Another woman reports nothing but a runny nose. So who knows, but it sounds like overall it’s a very tolerable treatment.

TDM-1 is an infusion only once every 3 weeks, which is awesome compared to every week. I’m getting really sick of going to the cancer center, so any break from that will be welcome.

So, I am now waiting to hear when I start TDM-1 and whether or not I should get a new port during the waiting period. Hopefully I will get those answers this week so I can work on my new schedule and get things planned!

I need your help!

So most of you know how much I love and appreciate The Pink Daisy Project. There is a link to their site here on my blog if you want to check them out and get more information. Well, they are having a super fun fundraiser next month while the YSC annual conference is in town.

This is the first time the YSC has had their conference on the West Coast, it’s going to be at the Hyatt in Bellevue the weekend of Feb. 22. Young women with breast cancer from around the country will come to share information and support. The Pink Daisy Project is local and is throwing a shin-dig at Lot 3 that Friday night. If you’re interested in attending, comment here or message me.

So, how can you help? We are looking for auction items! Do you own a business? Can you offer a service? Do you make/craft things? Have extra tickets to an event like a concert or sports game? Anything you can donate would be appreciated and all the money raised during the silent auction will go to help women during their cancer treatment. 

Can’t think of anything you can donate? Network a bit, maybe you have a friend or family member that could help? Spread the word!

My dog-filled days

I know I haven’t been posting much on this blog, not much has been happening. Feel free to add me on Facebook if you want more regular updates, I post little things there quite a bit. And cute dog pictures way too often.

I’m continuing with the Navelbine as my last scans were stable. I don’t feel like I know for sure what the side effects are because other stuff has been going on. I had horrible jaw pain that turned out to be a tooth that needed a root canal. I’ve had bad fatigue, but was down with a cold and then the flu. My trip to Cannon Beach I had been SO looking forward to turned out to be a bust as I got the flu my second day there.

I’m hopeful to be on the mend and back to regular life. And that regular life includes a ton of dogs. So cute!!! This is from today, with Allie, Christie, Finnegan, Metta, and Piper.


Navigating Navelbine

I’ve started my 3rd round of Navelbine and so far it’s not too bad. The first few weeks I had terrible pain in my ribs, but I think that was the lesions getting burned away. The fatigue is significant, but I’ve got lots of time to sleep so it’s not a big deal. The worst thing right now is the jaw pain, which only 5% of patients get. Lucky, lucky me. It’s not constant, which is good, but when it hits it brings me to my knees. I had my dentist take x-rays and make sure there were no problems with my teeth or jaws or anything. It’s all good, so this pain is just from the new chemo.

Navelbine is often used in cancer of the salivary glands, so I wonder if that is somehow connected to this jaw pain side effect. My cheeks and tongue also feel swollen. But my last set of scans show the cancer is stable, so I’m happy about that. Bone lesions are the same, but tumor markers are down a little. I’ve gotten several months off of chemotherapies in the past, so hopefully this one will work for awhile, too.

On to other things. . . we had a great Thanksgiving on Whidbey Island and the pups were so happy to get attention and time on the beach. We ate a lot of good food and I did a lot of sleeping.