Bottoms up! Faslodex

The new regimen of treatment for me is Faslodex injections once a month and Zometa IVs once every three months. Last month I had my "loading dose" of Faslodex (fulvestrant).

Faslodex is an injection which is used to treat cancer in hormone receptor positive women who have not responded to (or have had their case worsen) with other treatments, such as tamoxifen, or in my case, Arimidex. Faslodex is an estrogen receptor antagonist which prevents the cancer from being able to use the body's hormones to grow. It is only used in menopausal women and is NOT chemotherapy.

It is administered as an injection in the "buttocks" as the material so nicely describes it. There are very few side effects, other than packing a substantial whallop to your wallet. Well...relatively minor ones. The most common is an "injection site reaction."

Last month, I received a "loading dose" (basically twice the dose I will normally have), one shot in each "cheek" so to speak. The needles were a pleasure after getting used to the chemotherapy needles I have been using for so long. What did amaze me is the size and variation in color of the bruise which I had by the time I went to bed. Imagine yellows, to magenta, to dark "blue"....all in one fairly large spot. The spot was also hard and warm to the touch for about 10 days. The second week, I could still feel the lump but by then, the swelling had gone down and the area well...itched. Not exactly a ladylike spot to relieve the sensation.

Today, I got my second dose. When I went in, the nurse had two syringes ready....TWO? I asked about this because it was my second dose, and I thought I was done with the loading doses. She had wondered the same thing and had asked my oncologist before she came into the room with me. So, she decided it was worth asking again as I had understood that I was only getting one shot today.

She came back saying that recent information indicated that the "loading dose" should be administered for a longer period to have the greatest amount of efficacy. This news made me feel really great. Why? Well, it indicated that my doc keeps up on the latest information. Cancer treatment is changing....and rapidly. I'm grateful that I have someone who keeps up on what might be best for me.

I said something to the nurse about hoping this will work...her comment was that lots of people have lived a long time with good results on this drug. I'm just hoping I'm one of them.

Zometa part II (zoledronic acid)

I've now had my second dose of Zometa. I'm happy to report that the drug seems to work just like they said. While I had extreme fatigue with the first dose, I didn't have the same symptoms this time. According to the manufacturer's information, it usually only causes heavy fatigue in the first dose.

My doctor has me on it once every three months. I queried him on this as my "warrior" individual says I should have it monthly to fight it more! It also seemed like most of the information I found on it was that it was given monthly. In fact, I received my first dose when my doctor was on vacation. The nurses automatically put me done for a monthly shot, but I told them I was fairly sure that he wanted me to have it only once every three months.

When I was able to discuss this with him, he told me that he doesn't usually prescribe this for monthly unless I have extreme pain or in cases of multiple myeloma. He said that current studies indicate that having it more frequently doesn't ensure a more favorable result, and it does carry greater risk of negative side effects such as kidney failure and Osteonecrosis of the jaw. Frankly, I'd rather not have these side effects.

It's difficult to explain what Zometa is to my family and friends. Since it is given in 15 minute IV drips, everyone assumes that it is chemotherapy. It isn't. It is a bisphosphonate, and is the same compound as Reclast, for those who may be familiar with that from all the direct advertising.

They don't know quite how it works, but it does work well for some patients. I just hope I'm one of them.

Sometimes you just want to scream

Sometimes people want to help. Sometimes you just want to pop them in the nose. A week and a half ago, I realized that shoveling was getting difficult for me. I worked in the garden moving plants and shrubs several days in a row and my pelvis (at the joint between the femur and the pelvis) was aching severely.

I realized that this is the area which has been recently diagnosed with cancer more severe than in other places....and yet I also know that this is the same area which was fractured in the fall. It is my right leg. Surprisingly, because I'm left handed, this is the foot I put on the shovel, the one which carries the power.

I thought maybe, if I just used my left leg instead....I'm pretty ambidextrous in most things...only I felt like I was a clown wearing big shoes when I tried. I sulked. I mentioned to my neighbors that this was getting hard. I'm also getting a little concerned that I won't be able to keep this up.

I also know that my gardens are too full of plants as I love plants. I need to make divisions, send some things on to someone else that I don't particularly like after all....or whatever. So, I emailed my quilty friends that I needed to simplify my gardens as I won't be able to work on them like I have...at least for a while. . .

A couple of days later, one of my neighbors came running over. "Lisa! Lisa! I've solved your problem!!!" "Problem?" I thought.... "I talked to the woman who does my gardening for me. She's a member of the Hosta Society!!!! They'll come and dig up all your hostas, haul them away and even PAY you for them."

My jaw dropped open.

If you take a look at my other blog, you'll see how important my gardens are to me. Most of my hostas were brought down from Connecticut where I had over 100 different varieties. I had to keep on saying to myself "She means well." I had to make sure I didn't say "BUT I'M NOT DEAD YET! I'M STILL ENJOYING THEM!!!!" I was really dumbfounded that anyone would make such a suggestion to me with as much enthusiasm as this particular neighbor.

It will be a cold day in hell before I have the Hosta Society come in...at least while I'm still alive. If anyone digs up all my gardens and takes them away....it will be at a garden party at a time of my choosing, when the end seems near. I'll call in all my friends and ask them to bring friends who garden. They may come...have good food and drink, then take home what they want, leaving a more reasonable garden for Carlos to enjoy...especially since he doesn't garden or understand.

On the other hand...I put out to the local quilt guild and some of my other quilty friends that I have plants to share and plants to give away as I can't do this like this any more. Instead of coming to destroy my gardens, I've had three days of people coming to help me take out things which I point them to, weed and move things around to better locations. They've taken home things that I have pressed on them, not that they hovered over like vultures. What a more caring way to deal with this. I am enjoying working with everyone and I think they are getting something too, in addition to plants. Much to my amazement, the guild has offered to come and help me on a weekly schedule throughout the summer. Hopefully, I'll get the mulch down and everything and we won't have such a mess as I do now...but what a sweet and thoughtful thing to do.

My hip doesn't hurt so much, I've found, if I don't press my luck and go for several days in a row.

On another odd note.... On Sunday, May 30, I fell at Bruckner Nature Center while taking photographs. I stepped on a steep path and there were little twigs which caused my foot to roll...and fell on the side which I was holding the camera. I turn my wrist to protect the camera and heard a snap as I hit it. I have an occult fracture of the radius...and after three days in a splint, the orthopedist took it off and told me to use it, but if it hurt, don't do that particular motion. This would help maintain motion in this joint.

Now the thing I find interesting is this: In 1997, I stepped off a curb and rolled my foot, causing a torsion fracture. Two weeks later, I was diagnosed with a recurrence of breast cancer which I later found out to be stage IV. What a strange co-incidence that two weeks ago I discovered I had some more lesions (shoulder, ribs, sternum, pelvis) and then I broke another bone.

Anyway....

Cures for the Wealthy?

Earlier this month, the news was full of a new treatment was approved by the FDA which had been developed for late-stage prostate cancer. In this treatment, white blood cells were removed from the patient's body and treated with protein fragments from the cancer cells. This stimulated the immune response of the body.

This seems to me, at least on the surface, to be a great break through as I feel that the key to battling cancer is to look at the individual's immune response. After all, these are our individual cells which have run amok. Granted, I'm not a scientist, nor to I play one on T.V., but it just seems logical.

What doesn't seem logical though is that one of the reports I heard about this said that it was extremely expensive as it isn't mass-produced and that it takes a fairly long time in order to do it. Does this mean that if this IS the way to treat cancer that only the wealthy will be able to take advantage of it? Even now, it is a bit maddening to know that there are lots of adjuvant therapies which I could do, if I was willing or able to shell out the extra money to do it. In this case, I mean therapies which are not necessarily proven to stem the tide, but seem to have positive effects, such as qi gong, additional health suppliements, and other non-traditional therapies.

The other maddening thing is that this treatment only resulted in an additional four months of longevity in the study group. If I were part of this group, I would sure as heck want more than just an additional four months....In other words..once again, we are just not getting the full picture.

How do you tell your mother?

I know I've talked about this before....but I finally had to bite the bullet. This last Thursday I got the word that I have multiple bone metastases ...shoulder, sternum, ribs, vertebrae and another on the pelvis.

My mother will be 80 soon, and my dad is 88. My mom has severe back trouble now and is in a lot of pain, and my dad has congestive heart failure and is just fading away. Both of them are of very good mental state.

But I dreaded this. How do you tell your mom and dad who have their own health issues that their youngest child is once again in the trenches fighting cancer?

I know I have lived with this for a long time, but even so, I don't want them to worry a lot, and I don't want them to go through the anguish of watching me with this disease. It's hard when something like this happens.

My husbands family has a habit of sweeping things under the rug. I tease them that the family motto is "Diga Nadie" ---"tell no one." This is kind of a laugh as usually when this phrase is used, the teller has already told everyone and you find out later that you've been keeping this secret that everyone knows. Secretos. Secrets. Lots of them. This is not the way I was raised.

I feel that I owe my family the right to hear significant news from MY mouth so I can answer questions. It didn't make it any easier. But I think I made it better for my mom. She still said she was going to be "down on her knees" (praying). That's OK. Still, I wish I didn't have to deliver such news. Meeting it head on is always the best policy. What I can conjure up in my head is usually worse than whatever anyone has to tell me....and I feel that I owe it to everyone to lay it out. The good, the bad and the cancerous.

Same Song, same refrain

Yesterday's P.E.T. went fine. Well, lets put it this way. Although the technician DID try to find the vein in the center of my arm, and failed as no one has ever been able to get that one, he was able to access the old faithful vein in my wrist. I assure you, it is far more painful there, but when your veins are as bad as mine, you take what you can get.

Today, however, my oncologist called. Not a good sign when your doc calls you the day after you've had the test. Indeed, the suspicious lesion on my pelvis (the acetabulum) has gotten bigger. In addition, since my last P.E.T. in late September, there are new lesions on my sternum, shoulder, ribs and vertebrae. Given the rise in my tumor markers, this doesn't surprise me.

Was I hoping for a negative finding? Of course. Is my prognosis completely black? No. According to my doc, there have been a number of new drugs developed which might help and give me many more years. In addition, a number of new chemotherapies have been coming on the market which are good or have been very promising.

One of the things which surprises me the most is my reaction to all of this. No tears. I'm not even really upset. I think that is because I know at present that while death stalks me, it is not any more imminent than it was yesterday. I handled all of the struggle with coming to terms with my death when I was told I had stage IV cancer 13 years ago.

Earlier this month, I went to the funeral of an old family friend, Margaret Norton. When we lived in Bronson, we did lots of things with the Norton family. The oldest son, who was a couple of years older than my brother, married a woman who died of breast cancer in 2006. As she was dying, she said to Margaret, her mother-in-law, that she regretted not being able to live to a great age and to be a woman like Margaret. I can understand this completely. As a child, and then later as a young woman, I always thought of myself as growing old. Maybe I still will, although the likely hood of that seems more remote as I continue down this journey. I think I'm OK with that.

I do know that when I had cancer first in 1994 when my daughter was 15 months old, I prayed to be able to live until she was older. Then again, just 4 years later, I was praying the same thing. I still would like to be around to see her graduate from college. I certainly am most concerned as to the impact this will have on her life as I feel that things for a teenager and young adult are still a bit tenuous and mom is still needed even if there are maelstroms in between times. I want her to be able to face things without thinking about me or worrying about me.

Tonight, when I told her, she cried a little, and snuffled something about how she was nasty to me....but I think she'll be ok. We'll get through this. Even though the tree seems to be a bit barren, it has budded out now, and leaves will come and go and come again. Whether I fall like those leaves now, or years from now is rather immaterial. I have no control over that. I can just as easily have been killed by the idiot on 571 today who pulled out in front of me as not. I can live with cancer a few or many more years....I have no control over that. I can enjoy tomorrow for what it is...and the next day after that...and the day after that? We'll see. One step at a time. One moment in time.

PETs

Drats. Last Wednesday, my teenager had a tonsilectomy. She's done really well, but for the last two days has been complaining of a "swollen tongue." As my husband is allergic to penicillin, this was a little alarming. Plus, she's milking her recovery period for all she can get.

She's done well, and it is really less traumatic than most would be, but because of this, and other things I have on my mind (like getting the garden together, trying to sort out the house, keeping up with my book business, and finish quilts for shows) one major piece just slipped my mind.

Tomorrow, I will have a P.E.T. scan. P.E.T. stands for Positron Emission Tomography. A fancy way of saying they are going to map what is happening inside my body. It is a nuclear medicine method of seeing in three dimensions. Tomorrow, I will go in and have a radioactive form of glucose injected. After about an hour of sitting and doing NOTHING (not even reading which is a great hardship to me) I will go in and be scanned by laying on a movable bed which passed through a scanner. The glucose will be taken up more readily in areas of higher activity...such as in cancerous areas since cancer has a higher metabolic rate than other areas. Areas of healing, and other things can also be picked up.... Basically, as the radioactive particle decays, it gives off a positron...usually this involves gamma rays (and no, I'm not a Man in the Moon Marigold for anyone who remembers that book).

In order to prepare for this, you cannot do any strenuous work (well, it was a good thing I had to take the teen to the doctors today to figure out the tongue or I would have been digging and weeding the garden), shouldn't drink any caffeine for 24 hours, limit the consumption of sugars and carbohydrates (oops, I really blew that one, not so much for the sugar but most of my food today was high in carbs), and I cannot eat for 6 hours previous to the test (check, that one at least I can do).

I'm not looking forward to this. Not because I'm afraid of the results, or because I have problems with the radioactivity (hey, for a little bit I can glow), but because I don't really want to give up the time it takes. Pretty silly. I do think that they won't see anything with this....or maybe they will see old damage. Who knows? This is one more step in trying to figure out what is going on. We'll also see more when I have my blood tested next month for the tumor markers. Lets just see if this godawful expensive medication and infusion treatment I'm on is doing anything which we can positively see.