Crappy update

i ended up in the cancer triage yesterday because of increased shortness of breath and a distended belly. they thought that maybe i had fluid buildup in the belly because of my liver but they didn't find fluid there. they did find fluid in one of my lungs so they are making an appointment for me to possibly have the fluid drained.

the doctor i saw gave me the results of the latest scans and it appears that the current treatment isn't working and the cancer is progressing in my lungs, lower spine and liver. also they found two lesions on the brain that appear to be cancer.

i suspect i will now go back on taxotere, the iv chemo i had last time. i had really good results last time so i'm hoping it will do the same this time.

no news from the ortho specialist. i might just say to hell with it and just live with a baby finger that won't bend.

what i'm grateful for today: that my mom is here to help me and she doesn't complain about all of the hours spent at the hospital having tests and waiting, waiting, waiting.

First round of Xeloda finished

I just took my last 3 horse pills (aka Xeloda). I've been on them for 2 weeks and now I have a week off before starting the cycle again. I've only had some mild nausea but the Decadron (steroid) is still making me crazy. The doctor said we'd know fairly quickly from my symptoms if the chemo is working, but I'm no seeing any improvement in the voice, coughing or breathing.

What I'm grateful for today: A short nap on the deck this afternoon in the shade

Radiation

Jennifer took me for my radiation treatment this morning and it went well. Dr C said I’d be having 10 treatments to the rib but the nurse said I’m only scheduled for 5. Will find out more about that when I see the doctor this week.

I’ve had slight headaches and mild nausea for about a week, but I think that’s from the Decadron (steroid). The radiation nurse contacted my PDN (personal designated nurse) and I got a call this afternoon saying to stop the Decadron (yahoo!!!). I see the radiation oncologist on Thursday and the medical oncologist on Friday, so I’m hoping that between the 2 of them they can figure out why I’ve lost my voice.

In between all of these appointments, I’m hoping to make it out to a ‘rehearsal/trial run’ on Thursday for an upcoming canoe trip with a group of friends. I’m not sure if I’m up for paddling, but it’s been suggested that I could be the shuttle person between the camping sites along the way. That way I can still participate and camp with them at night. But, unless I get my voice back, I think I’ll have to skip the campfire sing-along. :-)

New tats

I went for my markings for radiation this morning and received 4 freckle-like tattoos so that the technician can target the treatments to my rib properly. My first appointment is next Monday and I will have 10 sessions.

What I’m grateful for today: Rain for my hostas

Bone marrow/stem cell transplant

I’m sure the latest O magazine has triggered a lot of questions to oncologists about bone marrow transplants.

"Turning a Death Sentence Into a Passport for Life: When Katherine Russell Rich was diagnosed with stage IV breast cancer, she was told she would likely die in 24 months. That was 17 years ago."

The article tells the story of a woman who had a successful bone marrow transplant 10 years ago. I also know of a woman who is living cancer free 12+ years after a bone stem cell transplant.

Bone marrow and bone stem transplants were done in a clinical trial several years ago. It involved harvesting your own (or a donor’s) bone marrow, high dose chemotherapy, and then re-injecting the harvested bone marrow.

Bone marrow transplants are no longer done because of the high risk and low success statistics. It is my understanding that a high number of the women in the study died during or shortly after the treatment.

Yet, there are some people that it worked for. When I asked Dr C about it, he said that, while they all know people who did well, the overall statistics don’t support the procedure and therefore are not an option.

When a woman has metastatic cancer and is running out of options, I think this should still be available. Knowing the facts, we should have the right to take the risk if we choose. I suspect that cost is a huge factor (it is a tricky procedure and involves a long hospital stay).

What do you know or think about bone marrow transplants for metastatic breast cancer?

Steroids

I started taking Decadron (Dexamethasone) yesterday – not my favorite drug. It usually makes me manic and affects my sleep; after all, it is a steroid. Also, one of the side effects is WEIGHT GAIN (shoot me now!).

Hopefully it will give me energy to get some things done around the house, but in this heat, I’ll probably have to resort to other outlets – like incoherent blog postings.

I’m attending a New German Medicine retreat at the Carp Wellness Centre this weekend. It will be interesting to see how steroid-hyperness and sessions on meditation and spirituality mix. I don’t want to share bunk beds (4 to a cabin) with strangers so I’m going to Dianne’s for the 2 nights and Katey will be there during the day. I’m sure Dianne and Brian won’t mind me using their pool at 2 a.m. to work off my steroid agitation… :-)

What I'm grateful for today: My basement 'guest suite'. It was so hot last night that Katey and I slept down there because the temperature was noticeably cooler.

Survivor

I’m behind in my postings and I have lots to catch up on: the Appetizers with the Ammas event, more on the conference in Philly, mother and son spa day, and the prodigal son party. For now, I’ll stick to the latest and hopefully come back to the other topics at a later date.

Yesterday was emotional with Adam and Tara leaving to go home. We BBQ’d a turkey for lunch and had ‘Festivus’ on my sunny deck before taking them to the airport. They got stuck in Frankfurt because of the volcano ash and had to take a train from there to Amsterdam, but they are finally home safe and sound. My heart is happy to know that they have such a great life in Europe, but it also aches a bit today because I miss them already.

The rest of me is a bit achy too because I had my first Pamidronate infusion this morning. It has left me with a few flu-like symptoms so I’m spending the evening in front of the TV finding out who won the latest Survivor. (I can’t believe that show is still on. Even more so, I can’t believe that I still watch it!).

I don't want to outwit, outplay, or outlast anyone.

I'm just fighting to stay in the game.

Oncology visit

My son Adam came to my oncologist appointment with me today. I wasn’t sure if it was a good idea or not but I want him to feel that he is involved in my health care, at least as much as he can considering that he lives in Europe. The distance has its advantages and disadvantages: it makes denial easier but I think that being parachuted into an appointment at the cancer centre during his vacation leaves him feeling, understandably, a bit shell shocked.

The plan is to keep me on Faslodex and add a monthly Pamidronate IV to strengthen my bones and prevent fracture. I have an appointment next week with a radiation oncologist to discuss treatment for the lesions on my spine.

What I’m grateful for today: The leisurely walk that Adam, Katey and I took along the river today.

Crap and what I'm grateful for

I knew that the chemo room was moving to the new building at the cancer centre but I didn’t know they are now up & running. The new digs are lovely and spacious and I actually had privacy for my injection today. (I once received my shot in the chemo room washroom because it was the only place available!)

I had a look at my chart while I was there and I was right, the tumors are in the lower lobe of each of my lungs. I thought that’s what my onc had said, but I wanted to read the report. What I missed was that the nodules on my chest are also slightly larger.

So I paid $139 today for an injection that isn’t working ... although I am hoping that it is at least slowing things down.

In the midst of crap there are always things to be grateful for. So I’m going to try and write “What I am grateful for today” at the end of my posts. Here is my first one: What I am grateful for today: Friday hikes. We had a larger than usual turnout this morning and we hiked to Keogan cabin for lunch. What a wonderful day, wonderful surroundings, wonderful friends.

Drugs

When you have cancer, you learn a whole new language – one that includes both the generic and brand names of treatment drugs. Since my diagnosis in 1998, I have received the following:

Adriamycin (Doxorubicin)
Cyclophosphomide (Cytoxan)
Taxotere (Docetaxel) - twice
Tamoxifen (Valodex)
Femara (Letrozole)
Arimidex (Anastrozole)
Fulvestrant (Falodex)

That does not include Neupogene (a white blood cell booster), steroids, anti-nausea pills, antibiotics, anti-depressants and complimentary naturopathic remedies meant to reduce the side effects of the cancer drugs.

It looks like I’ll be starting a new drug in a few months, once they have another look at my lungs. Some of the possibilities include Xeloda, Naveline, Abraxane, Ixempra, Gemzar and Fareston.

This weird cancer language also includes terms like: tumor marker, cancer stage, aromatase inhibitor, extrogen receptor, metastases, port-a-cath, and ablative therapy. What sounds like Klingon to most people becomes common place for those of us who are riding the cancer roller coaster.

Common breast cancer terms and definitions

Thar's snow in them thar hills

It's a beautiful fall day; 13 c and sunny. It's hard to believe that there's snow in the Gatineau hills. We hiked to the ruins of the old Thomas Wilson fertilzer plant on Friday. It was a lovely way to spend the morning, before heading to the cancer clinic for my injection of Faslodex and bloodwork. People always ask how the treatments are going, but the truth is that they are pretty uneventful. The injection is quick and when I don't need blood work, they flush saline through my port to keep it open.

Canadian researchers make breast cancer breakthrough

Scientists decode breast cancer tumour's DNA
Telegraph Journal, Published Thursday October 8th, 2009

TORONTO - In a world first, Canadian scientists have decoded all three billion letters in the DNA sequence of a metastatic breast cancer tumour and identified the mutations that caused the malignancy to spread.

Read the full story

Connections

Today was my monthly Faslodex injection day. On the walk to the cancer clinic from the side street where I usually park, I came across a woman wearing a scarf on her head, leaning against a lamp post. I asked her if she was OK and she said her legs were shaky, so I offered to walk with her.

As we very slowly made our way to the clinic, she told me that she was going for blood work in preparation for her next chemo. When I told her about my cancer history she said I looked great and I think it gave her hope that I was doing so well.

We never exchanged names and I’ll probably never see her again, but she hugged me when I left her at the blood work room. I’ve had so many similar encounters: exchanging stories with someone in the waiting room; having the person next to me in the chemo room wish me well.

We are all strangers. We are all connected.

Dutch Injection

I went to a doctor in The Hague (Den Haag) this morning and had my monthly injection of Fulvestrant (Faslodex). Refridgerating the drug on the plane was the hardest part; the actual injection was quick and there were no problems. Now that's done, I can relax and enjoy the rest of my visit.

Adam is taking tomorrow off and is being rather mysterious about what we are doing...

Energy Therapy

Last summer I saw an energy therapist in Mahone Bay, Nova Scotia. His name is Rene Grieder and he practices Yin-Yang Frequency Neutralizing and Homeopathic Plant Essences Therapy using Needleless Acupuncture. The treatment is based on the theory that healthy cells have a different vibration than pathologic cells. Using acupuncture points, natural medicine essence frequencies target areas of the body which are most in need of healing.
I don’t claim to understand how it works. What I do know is that since seeing him last fall, the tumors in my lungs have disappeared. My oncologist claims it’s the chemo. My mother claims it’s prayer. But maybe it’s a combination of everything, so I saw Rene Grieder again last week.

I was impressed on my first visit when Rene told me that I had bacteria in my right jaw, without me telling him that I have TMJ (temporomandibular joint) problems. During my most recent visit, he said that my pancreas is not healthy. I hadn’t told him that I went to emergency after my first chemo treatment with a pancreatitis attack.

I did tell him about the swollen lymph nodes in my chest wall and he said that my lymphatic system was stressed and spent a good part of the 2 hour visit working at unblocking it. I have a CT scan scheduled for next week. It will be interesting to see if the size of the swollen lymph nodes has changed since my last scan.

Waiting for results & Estrogen therapy

I had a CT scan of my lungs and abdomen this week and probably won’t get the results until my mid-May oncology appointment. I could call and ask for the results before then, but I’d rather just put them out of my mind for now.

I think I’ve come to accept that I will have good results and bad results along the way and I don’t expect either to drastically change the outcome. I don’t mean that in a pessimistic way; it’s just how advanced cancer treatment works. You go for a period of time where the drug you are on is working and, when it is no longer effective, you move on to something else. I’d rather spend the time when the drugs are working enjoying life, rather than worrying about what’s next.

Not worrying about what’s next is different than not thinking about it. I’ve been reading about a study using hormone replacement therapy (HRT) for some women with advanced estrogen positive breast cancer, which is my situation. HRT has always been a big no-no for anyone who has, or is worried about getting, breast cancer. But for those of us who have become resistant to aromatase inhibitors (AIs), estrogen therapy may offer an opportunity to reverse that resistance.

In a study conducted by Washington University School of Medicine, they found that estrogen therapy can sometimes stop the growth of tumors for a period of time and even cause them to shrink. The estrogen can even improve the quality of life by reducing hot flashes and other symptoms of menopause.

The best part is that the estrogen can possibly return metastatic tumors to a vulnerable state. Resistance to AI therapy was previously thought to be permanent, but the estrogen can make it possible for AIs to work again in some cases.

Because I have become resistant to both Femera and Aromasin, I definitely plan to talk to my doctor about this study at my next appointment.

The video on this site does a good job of explaining it.

Another month, another jab

I had my 3rd injection of Fulvestrant today. So far, so good, but the results of the CT scans I’m having next week will reveal if it’s working or not.

I have to call the airlines to see what I have to do to take my June injection with me to Holland. It comes in an injection kit, complete with needle and syringe, so they may have some concerns about me putting it in my carry-on. Also, it has to be refrigerated, so I’ll have to have it in a cooler bag with ice packs. I plan to go to a clinic in the Netherlands to have the shot.

The side effects are minimal (especially compared to Taxotere!) but I'm still having a fair bit of bone and joint pain.

First shot of Fulvestrant

Just back from my first injection of Fulvestrant (brand name: Faslodex). Finally! I’m on a drug that has the potential side effect of loss of appetite! It was pretty uneventful – just bend over the table and get a shot in the bum. So far, so good.


I was happy to see my own oncologist, Dr. Stan Gertler, for the 2nd visit in a row. He’s been my oncologist since 1998 when I was first diagnosed. One of the things I like about him is that he has a good balance between compassion and honesty.


This is the look I’ve been sporting lately. I go bald around the house, wear scarves when I go out, and save the wigs for special occasions. In this particular fantasy, I look mysterious and international, rather than like a sick lady with a bad turban on. :-)

Fulvestrant

I went to the pharmacy today to pick up a prescription for Fulvestrant, in preparation for my first injection next week. $659 later, I reviewed the drug information that came along with it. Possible side effects listed include: pain/swelling/redness at the injection site, nausea, vomiting, loss of appetite, constipation, diarrhea, upset stomach, dizziness, tiredness, weakness, headache, body aches/pains, flushing and sweating (hot flushes/hot flashes), or trouble sleeping. The only one I am hoping for is loss of appetite!

Goodbye to Taxotere

I had my last Taxotere treatment today. When you finish chemo in the Ottawa Cancer Centre to get to ring a bell to celebrate and let everyone know it's your last one. Even though I’m not technically finished chemo, I am done with Taxotere (at least for now) and I’m not even sure that I’ll have to come to the chemo room next time. I think that the new drug will be administered in my oncologist’s office, but I have to check on that. So I asked the nurse if I could ring the bell and she said to go for it. Anka was with me and everyone applauded when I rang the bell. It felt great!