Back to Chemo

Where has the time gone? I don't even have an excuse for not posting since October. Well, a little excuse. I was scared to face the truth.

Like I mentioned in June, my breast lump grew back. Since then, we have been talking a lot about it, considering options. Initially my oncologist suggested that if the lump was problematic, the options were surgery and radiation. I saw my radiation oncologist in the fall. She wasn't inclined to radiate the breast unless it was causing a lot of pain. I had pain, but intermittently, and mild. Later in the fall, one of the physicians who supports the oncologist felt the lump and suddenly, a chemo trial was on the table. It was a trial with Xeloda and either Tykerb or a new anti-Her-2 drug. I will admit the prospect of chemo surprised and scared me. I didn't expect that, since I've felt quite positive about my experience with Taxol at the beginning of my treatment. Taxol and Herceptin was my first line of treatment. After a year of that, I took a short break and then started Tamoxifen with Herceptin. The Xeloda trial required two previous lines of treatment, I learned that only chemo counts as a line of treatment in the trial world, so I was ineligible. Tamoxifen didn't count.

The physician ordered another round of scans. I did a bone scan and the results showed stability in my bone mets. I was starting to think the breast mass was simply necrotic (dead) tissue. I wanted a biopsy before stating a new treatment. Then we got the CT scan results. Not only had the breast lump returned, it was continuing to grow. And, there was a second breast tumour I hadn't noticed. And there was some thickening in the abdomen that could represent new small tumours. And there is a mass next to my uterus. Chemo it is!

Ten days ago, I started Vinorelbine, with Herceptin. Clearly systemic treatment is required. Vinorelbine, which I like to call vanilla bean, is known to have milder side effects than chemos like Taxol, for example. So far, I've had some indigestion and constipation. So far, my hair hasn't gone anywhere, but it is too soon to tell if I'll lose it. I pray that the vanilla bean will be effective, with few side effects. I could use your prayers as well.

I will be in Vinorelbine for as long as it works and I can tolerate it. An ultrasound is being scheduled to investigate the uterine mass. And, I hope, I will get back to blogging, both here and on my family history blog. It has been too long between posts. Glad to be back.

Port-a-Kath

That is me. I've done it. After eight or nine months with a PICC line, I gave up and asked for a Port-a-Cath. I found the dressing constantly itchy. We tried paper dressings and iodine, but still I scratched. The new PICC dressing became available, and it too caused itching. As much as I enjoyed the nurse's visits I was getting, I was done with the PICC.

I asked for it at my last oncology appointment, and within eight days I had the port in. Now it is the stitches that are itching! Is there no respite for me? A gripper, also known as mini-loc, is on place, with dressing over it for another week. It will come out after my Herceptin treatment next Friday.

I was not pleased to learn that the port can't be used for a CT scan, like a PICC can. So on Thursday I had an IV and a port put in and a PICC removed, only to have another IV put in on Friday for the CT. That plus the blood tests, makes for some bruising.

If you're keeping score, that is now three PICCs and two ports. Will this be the last? I told the doctor who inserted the port about the bruising and infection I had with the last port. He assured me those were unusual experiences and that it would be very unlikely for me to have trouble with the new port. Here's hoping it works for many years.

I'm Not Doing It, The Port That Is

Just a quick update, folks. After much thought, and discussions with nurses and my husband, I have decided not to go ahead with the insertion of the Port-a-Cath on Thursday.

The key factor for me was that my current treatment is oral Tamoxifen daily and infusions of Herceptin and Pamidronate every three weeks . These drugs don't damage the veins like chemo does. So I don't really need the port now. At some point, I should expect that this treatment will fail. Eventually I will have to go back on chemo. At that point, I will need either a port or a PICC. But I will wait until then.

For those of you who are deciding whether to get a PICC or a Port-a-Cath, here are the pros and cons as I see it. Please check with Dr. Google to learn about other aspects that I didn't experience:

Note: as soon as I hit "publish" I thought of more items for the list. They are marked with a "*".

Port-a-Cath

Pros

• Protects veins from chemo.
• Once the incision heals, you can shower and swim normally.

Cons

• Both inserting and removing the port require minor surgery. Healing from the port insertion feels like you've been kicked by a mule. I was aching and taped awkwardly, which made me walk like Igor from the old horror movies.
• *The port site is exactly where your child's head cuddles you. Seat belts and bra straps will also irritate the site.
• The port may erode the skin above it. In my case, I had persistent bruising at the port site (not normal) and later an infection.
• I could feel where the wire looped up my neck. It was a little painful. Definitely icky.
• In Ottawa, an appointment with a nurse is required to use the port for a blood test. If you want to leave the Gripper needle attached between the blood test and treatment, sterile dressing is required. So much for showering normally.
• If your port isn't accessed every four weeks, you need a nurse to come to flush it.
• The incisions (there are two of them) and the port site could form keloid scars. At the suggestion of my dermatologist, my doctors injected Kenalog (a type of cortisone) at the incision site to reduce the chance of keloids forming. It worked, so far.

PICC

Pros

• Protects veins from chemo.
• Painless accessing of the PICC for blood tests and IV medication.
• Removing the PICC is easy. They slowly pull it out. I watched; it was cool.

Cons

• You walk around with a bit of tubing sticking out of your arm the whole time. This is covered with sterile dressing. It is annoying in the summer. I had a weird tan that year.
• A nurse must come weekly to change the sterile dressing and flush the PICC line.
• You can't swim.
• To shower you have to wear a plastic sleeve to keep the dressing dry. Your arm never gets a good scrubbing.
• In Ottawa, an appointment with a nurse is required to use the port for a blood test.
• If you are sensitive to adhesive, like I am, you may need to use Mepore (paper dressing) to avoid irritation. I later changed to IV3000. My skin was fine while I had the PICC, but I had some scabs form after the PICC was removed and the dressing taken off for good.

No PICC or Port

Pros

• No holes in your body.
• You can swim and shower normally.
• You can walk in for blood tests either at the hospital or a local blood lab. No appointment necessary.

Cons

• Chemo can damage your veins.
• Blood tests and treatment will require a poke in the arm. If your veins are hard to find, as mine sometimes are, maybe two pokes. You may bruise at the site of the poke.

That is all I can think of. I hope these pros and cons will be helpful to someone that's just starting out with cancer treatment. I know I will come back to the list when I have to start chemo again.

Please add a comment with your experience with PICC lines and ports.

Bye-Bye Port-A-Cath, Forever?

Well, so much for that Port-A-Cath. After only ten months, my Port-A-Cath abscessed and had to be removed. Apparently this usually happens in patients with little extra fat. I guess I just got lucky, not thin.

The removal surgery, two weeks ago, was fairly straightforward. It was done with local anaesthetic and dissolvable sutures. I needed to be careful not to lift too much, which is hard with a new puppy who isn't confident on the stairs. Afterwards, I had to have my Herceptin and Pamidronate by IV, which went well.

Next Thursday, I am scheduled to have a new port inserted on the right side, just in time for my next treatment. But I am having second thoughts. I have been off chemo nearly a year. The Tamoxifen is keeping my tumours stable. I get Herceptin and Pamidronate every three weeks. If I understand right, they aren't as hard on the veins as chemo is. I don't know if I have mentioned it before but I form keloid scars -- scary scars that keep growing for years, long after an injury has healed. Did my skin's nature play a role in my port's abscess and erosion?

I could really use some advice. Do I really need to get a new port put in? Should I just wait until the day when I need chemo again? Or should I be protecting my veins from the Herceptin? What do you guys think?

Stage IV Snapshot -- Emergency?

None of us wants to go to the Emergency Room, but Tuesday night I was pretty sure I should. A sore erupted on the edge of my Port-a-Cath. That's not just unsightly. The catheter could take the infection straight into my bloodstream. I've been septic before and don`t want to risk it again. (Can you guess I spent some time with Dr. Google while waiting for a home care nurse to return my call?)

I have had persistent bruising at my port site, particularly to one side. It just wouldn't disappear between treatments, which are every three weeks. In fact, at my last treatment, I'd discussed it with my chemo nurse. She didn't have any advice for me. Earlier this week, I noticed that there seemed to be a small sore over the bruised area. I showed it to my Sweetie and we both said "hmm?" We were on our way to Montreal for a short visit and thought nothing more of it. Then when we returned to Ottawa I took a closer look at it after getting out of the shower. It was now clearly infected. The home care nurse wasn't sure what to make of it and wouldn't be able to see me until midnight or later. I called my family doctor's after-hours service and that nurse was more definitive: I should have a doctor examine it within the next four hours. Great.

We asked my daughter to hastily repack her backpack for a spur of the moment sleepover at my mom's and off we went to the hospital. Four hours later, the ER doctor assured me that I had no signs of sepsis, but certainly needed antibiotics, starting with an immediate double dose. He also suggested I give the Cancer Centre a look at it the following day. The nurse dressed the wound with antibiotic cream and gave me enough Cloxacillin that we didn't have to stop at the pharmacy on the way home. Instead we were allowed a few hours of sleep.

The next day, my Patient Designated Nurse put me in touch with Sheryl of the hospital's Port Team. She was able to meet with my when I came early for an unrelated specialist appointment (verdict of that after three months and two hours of waiting: no hip surgery). Sheryl has arranged for daily nursing to change the wound dressing. And she broke the news that my Port-a-Cath probably needs to come out. I now have an appointment next Tuesday to have it examined. It sounds like the infection needs to have subsided before they will risk the surgery. Whether they will put a new port in at the same time, I don't know. All I can tell you is that I`ve learned a few things in my ten months with my Port-a-Cath:

• The ones on the left side have more problems.
• Bruising isn't normal.
• And sometimes they erode the skin over top them.