Port removal update

Last Friday they removed the current (my second!) port-a-cath. The fistula just below it showed signs of a staph infection, so now hopefully the red line on my neck will heal along with any other issues.

Conscious sedation (i.e. Versed and Fentanyl) gives one an odd feeling. I undressed, put on a hospital gown and an extra pair of socks, and a nurse started an IV line in my right arm. They rolled me from the prep area into the interventional radiology surgery area, which featured lots of high tech x-ray etc. equipment and an enormous computer screen for the doc to track his work.

I scooted from the gurney onto the "table" and tilted my head to the left, away from the port site, while Nurse Romeo set up a blue fabric screen with a big hole out the left side, to prevent claustrophobia on my part.

The nurse gave me Fentanyl first (for pain relief) and I almost immediately went into la-la land. Then she gave me the Versed and I was no longer aware of anything.

Versed is funny: you probably can answer questions the staff put to you, but you don't remember what's happening from moment to moment. Rik will have to say if I repeated myself over and over again afterwards, which is the typical side effect.

We went to lunch at Mediterranean Kitchen (oh those farmer's wings!) and then walked back to Swedish for my monthly shot of Faslodex and my every two months' dose of bone-strengthening Aredia.

It ended up a very long day. Rik had to go home to feed the dogs, then came back for me at 5 PM. In the meantime, Dr G walked over to say hi and check in with me before he left for the day.

After we came home, I crashed on the bed for a couple of hours, woke up at 8 PM, had a snack, and took the first dose of Ibrance round 2. I spent the weekend recovering, relaxing in the sunny weather and am ready for today's scans.

Update re Dr G

I saw Dr G a few days ago and learned from the scan reports that my cancer has stayed the same in my brain, but the mets in my liver have grown significantly. My tumor marker also went up by 100 points. So it's definitely time to start another chemo. As Dr G put it, Xeloda clearly worked on my brain, but not so well on my liver. The PET/CT scan also showed a new metastasis in my left elbow, as persistent pain there indicated to me night be the case.

So I start Abraxane with Avastin this week, once a week for three weeks in a row. Somehow we fit Aredia (every three months) and Faslodex (monthly) into the schedule as well.

I feel good, and hope that next week's chemo will start to make a difference quickly!

Cancer update

I really promise to write more about Bulgaria, especially a topic on my mind for about two weeks. My brain calls this subject "A Tramp Abroad," in humble imitation of Mark Twain. But first a cancer update.

I saw Dr G today for the first time in a month. My tumor marker has climbed 50+ points since my last treatment. Since this big a jump is no longer just "noise" to him, Dr G thinks it is time to change treatment. He would like me to try a taxane again because Abraxane worked so well, until increased neuropathy in my feet began to make me stumble when walking. I reminded him that even one dose of Taxol caused my neuropathy to flare out of control.

We compromised on trying Abraxane at a lower dose than last time. I suggested that first he order a PET scan and brain MRI, so that I start the Abraxane with fresh data. I will see Dr G after those scans, get the results, and then we can move forward. I truly love, admire and appreciate how that man listens to me!

In the mean time, I am not to restart Xeloda or methotrexate, but to continue Aromasin daily, and Avastin (every two weeks), Faslodex (once a month) and Aredia (every three months).

According to www.chemocare.com, the following side effects are common (occurring in greater than 30%) for patients taking Abraxane:

Low blood counts (your white and red blood cells may temporarily decrease which can put you at increased risk for infection and/or anemia)
Hair loss
Nausea
Abnormal ECG (electrocardiogram)
Peripheral neuropathy (numbness and tingling of hands and feet)
Arthralgias and myalgias, pain in the joints and muscles (usually temporary occurring 2-3 days after Abraxane, and resolve within a few days)
Weakness and fatigue
Increases in blood tests measuring liver function (these return to normal once treatment is discontinued)

Last time for certain I experienced peripheral neuropathy, hair loss, weakness and fatigue; perhaps now blood counts and nausea (I can't remember and anyone can search my blog for that information). Who knows what will happen this time? My wig and scarves are ready, just in case...

Starting Xeloda cycle 9 next week

I saw Dr G today and he says my tumor marker has fallen a few more points (now 152). My other numbers all  look normal, including my liver function (an indication of the health or lack thereof for my liver mets).

However, I did complain to him about recently having to "reach" for words. You know, when you can describe the thing but can't come up with the actual word right away. Dr G says it could be a sign of chemo brain, or even middle age, but he wants to order a brain MRI in case it's my brain mets acting up.

I will have the brain MRI on September 9th and see him a few days later to get the results. In the meantime, I will continue on the same regimen of Xeloda daily by mouth, Avastin every two weeks by infusion, and Aredia and Faslodex (infusion and injection) every four weeks.

I say, let's drink rose wine, eat ice cream, pick the blackberries and generally enjoy the rest of the summer.

All is good

My dear friend N reminded me today that I needed to update my blog, that people worry id they haven't heard from me for a while.

Basically, all has been fine since I last posted on July 6.  And when I feel good, I tend to be busier than not, which leaves less time for blogging.

My days have been basically the same: a doctor's appointment or other errands in the mid-morning that last until early afternoon, then a two hour nap, then dinner prep and an evening with hubby Rik.

I'm continuing to put henna on my hands and feet every other day (see Pub Med abstract). Today is Xeloda day 8 and my hands and feet are in pretty good shape. If things worsen, I imagine I will feel it by Thursday, but I am hopeful that the henna will help.

Tomorrow I start getting my Avastin and Aredia at Swedish Cancer Institute, since the Minor and James infusion center is no longer serving patients. I look forward to seeing my fave nurses at SCI!

Back to Aredia

Dr G spoke with my dentist Dr Amy; I spoke with my orthopedist; Dr G and I conferred together and everyone agrees that my bones need more protection. So this week I started again on Aredia, a bisphosphonate that strengthens bones. Of the three major such drugs, Aredia is the oldest and the least strong. Hopefully it will not cause any issues with my osteonecrosis of the jaw and hopefully it will increase my bone strength. I first took it ten years ago when my mets were detected.

This week's infusion lasted a very long time. I arrived at 11 AM. First the nurse had to hook me up. The lab was quick and had my Avastin to me in mere minutes. That infusion lasted about 35 minutes (good to the last drop). Then we started the Aredia drip, which is supposed to take about two hours. Well, what with the whole "good to the last drop" thing, it took almost 2 1/2 hours to finish. Then it was time for my monthly double shot in the tusch of Faslodex. It was about 3:30 PM when we left and then I absolutely had to have an ice cream at Molly Moon's (earl grey with hot fudge -- yummy!). Special thanks to my friend J who sat with me the whole time, got us lunch, and kept me entertained.

I will continue with all three drugs once a month. On the other hand, the Avastin is only every other week. Hopefully adding in the Aredia will make a difference in my bone health.

I will continue on the Xeloda for the time being.

Slow blogging these days

It seems to me that the better I feel, the less often I blog. I've felt pretty good since getting Dr G's word that all seems stable. Here's the report from last week's visit.

At my request, Dr G is putting me back on the standard dose of Xeloda starting this week. I figure, if I felt good this last time, maybe I could tolerate the standard dose better now.

I've recently noticed some arthritis in my thumbs. It's not very painful, but noticeable, especially when I use my hands to open a jar, etc. Dr G told me that although most cancer drugs actually help arthritis improve, evidently aromatase inhibitors make it worse. So I will stop the Aromasin for the next few weeks and we'll see if that helps the arthritis.

My insomnia has worsened due to the neuropathy in my feet. I feel the stinging/numbness/pain every moment of every day, but it doesn't usually bother me while I am awake. As soon as I get into bed, though, I lie awake for hours listening to my feet "talk" to me. By the time I take an Ativan it's often 2 AM, Even if I don't take an Ativan, I don't fall asleep until 2:00 or later. Both my friend J and Dr G recommended the same thing: take the Ativan earlier in the evening. So I am trying to take it at 9 PM but I don't have any meaningful data to report yet.

I am probably going to start taking the bisphosphonate Aredia again in two weeks. Dr G still needs to connect with my dentist, but I sure they will talk soon. My bones need the extra protection, and that may outweigh the risk of increased ONJ. Dr G will order the Aredia and Avastin to be given one after the other so my time in the chemo chair can be all on the same day for two hours instead of one.

Scan stable/improved

My recent CT scan shows improved and stable disease in my liver - yay! There is some concern about my bones, especially since my rib fractured just before we went to Hawai'i. I will see my orthopedist tomorrow and get his opinion on what to do about the fracture, if I should go back on a bisphosphonate, and whether we would get more information from a bone scan.

Dr G is going to talk with both Dr Flugstad and Dr Winston, my specialty dentist, about the potential impact of Aredia on my jaw. The oldest of the bisphosphonates and actually the least powerful (we looked it up today), Aredia might be a good choice, but all the docs have to weigh in.

More news tomorrow!