I had a dream

To quote from the Broadway show "Gypsy" --

I dreamed I was watching pieces of my life being boxed up and thrown out. First I was in the hallway, saying that I needed those boxes, don't move them. Then I was outside watching belted trunks begin tossed around.

I think this is both emblematic of the stress I feel and a reaction to the way cancer appears to be taking over my life. I almost said taking over my life again, because of course this has happened many times over the past nine years. In stead of sitting quietly on a merry-go-round bench, I'd suddenly be thrust upon a pony, hanging on for dear life while it went madly up and down.

I'm not much on dream interpretation. Are the boxes parts of my life I've had to give up? If so, hat are they? I'm still singing an I even danced last weekend. I thought I gave up on the parenting dream years ago. My health is what it is; sometimes I feel okay, sometimes great, sometimes like crap.

Maybe the boxes represent giving up hope that I could continue to ride the metastatic breast cancer merry-go-round even longer than I already have. I confess that I feel my mortality even more so this past week than in recent months. Learning that I have new mets everywhere was daunting. There just aren't too many treatment options left to me.

Dr G says that one just has to live long enough for the next new thing to come along. That next new thing may likely be Afinitor, presuming the FDA approves its use in metastatic breast cancer.


(Pertuzumab is a different drug. You may have heard about Darlene Grant, the woman with mets who believes that pertuzumab could extend her life and appealed via YouTube for compassionate use. Pertuzumab is designed to treat HER2neu+ cancer. We'll see what the results of yesterday's biopsy show, but my cancer has been HER2neu- until now.)

** Today's update on Afinitor: Dr G's nurse says that he had the peer to peer review with my health insurance company and then asked her to contact Novartis, maker of Afinitor, for more information. Rik also faxed my application to Novartis for financial assistance in receiving Afinitor.

Quick update

It's been doctors, doctors, doctors for days now.

Today I saw the dermatologist, who took biopsy samples from the scalp lesion (which was biopsied in 2010, but has regrown) and from a mole on my right breast. He thinks the odds of the mole being melanoma are small, but still... The scalp biopsy was my idea. It's possible that my cancer has changed from highly ER+/PR+ and Her2 neu negative. The last time we did this, in 2010, nothing had changed. But still my cancer had stopped responding to the estrogen blockers. Retesting has the potential to give me more treatment options.

Then it was off to see the naturopath, who didn't change my supplements but recommended StressArrest (mostly niacin and pantothic acid, from what I can tell). My stress level has been climbing and I might be on the verge of a depression.  I also left a message for my shrink.

Yesterday's medical trip involved unclotting my port. On Monday I went to the UW Hospital to give a blood sample for genetic testing for the BRCA 1 and 2 genes. (Again, I was tested in 2002 and came up negative, but the technology has improved in the interim and the test is evidently more sensitive now.) The nurses there were unable to get blood return from my port, and I didn't have time to come back at 4:30 PM for a few hours while they gave me alteplase to dissolve a clot in the port. So on Tuesday I went to Dr G's office. The nurses couldn't get good blood return either on the first try, so they gave me alteplase and voila! two hours later, I was fine.

I also learned yesterday that Dr G was scheduled to participate in a peer to peer review of my need for Afinitor (everolimus) and why my insurance company should pay for it. I haven' heard the results of that call, but interested parties can read about the study confirming its efficacy here. (This link may be for subscribers only, but you can google the title: "Everolimus in Postmenopausal Hormone-Receptor–Positive Advanced Breast Cancer.")

All this medical makes me stressed. Yesterday's therapy was to get in bed at the end of the afternoon and pull the covers over my head (denial). That didn't work too well. This afternoon I worked in the garden for an hour or so (avoidance). Pulling weeds was more therapeutic, but I still wonder if I am on the verge of depression. Tonight I sang with my choir Dunava and that was the best medicine of all. Singing lifts me out of myself.

Now I am tired but it's a good tired. On to more tomorrow.

The next plan

I spent almost an hour with Dr G, coming up with a next step plan.

1. He liked Dr Gadi's recommendation of combining Afinitor (everolimus) with double aromatase inhibitors. Afinitor is a targeted therapy and is classified as an mTOR inhibitor.

mTOR inibition blocks the translation of genes that regulate cancer cell proliferation. It also results in reduced levels of certain cell growth factors involved in the development of new blood vessels, such as vascular endothelial growth factor (VEGF).

mTOR inhibitors are thought to turn estrogen receptors back "on," so that the cancer would respond to estrogen blockers again. So I will also start high dose Faslodex and Aromasin, a double AI therapy. I've had both of these before. Faslodex is given by injection (two shots in the tuchis, ouch!). The other drugs are all taken orally.

2. I will try this for one month and then have another set of PET scans, full body and brain, to determine how well this combo works.

3. My remaining scalp metastasis will be biopsied and checked for estrogen reception, progesterone reception and HER 2 neu factor. It's apparent that my cancer has changed from highly ER/PR+ to being much less so, but as Dr G pointed out, my cancer did respond very well for years to the estrogen blockers. It's worth rechecking the HER2 neu factor because if that has changed as well (I was originally HER 2 neu-), I could take Herceptin and Tykerb. Dr G may give me these drugs anyway.

4. While I try this plan, we will hold off on any radiation therapy. Since I have no symptoms now, it's a good time to try drugs first. We can revisit whole brain radiation or gamma knife later, if need be.

The downsides?

Afinitor was very recently approved by the FDA and is extremely expensive ($10,500 for a 30 day supply, according to my pharmacist). Dr G's office is checking with my insurance provider to see if they will cover any of this expense. (I do have about two weeks of sample pills to start off.)

Among other side effects, Afinitor also causes mucositis (mouth sores) in many patients. I had terrible mouth sores while on Doxil and had to discontinue that chemo. With Afinitor, if I develop mouth sores, Dr G can decrease the dosage.

It's a good plan. What I like best is having a plan, and knowing that there are still options, such as high dose estrogen and other chemotherapies.

Listen well, my cancer: if you want to stick around, you'll get quiet on this regimen and we will all live longer together.

BRONJ

I now have BRONJ -- bisphosphonate related osteonecrosis of the jaw.

"After they are taken orally or intravenously, bisphosphonates bind tightly to the surface of the bone directly beneath the bone cells known as “osteoclasts,” which actively dissolve bone. The drugs then become incorporated into the osteoclasts, stopping them from dissolving bone. As a result, bone production continues, bone loss decreases, bone density is improved and the risk of fracture is reduced."    (http://www.aaoms.org/bronj.php)

It started quite a few months ago as what I thought of as a mouth sore, which I reported to Dr G. But it never hurt too much, and so I stopped mentioning it. At my prior dental exam in October 2011, no one remarked upon it. Or at least no one wrote a note remarking on it.

At today's dental visit, my dentist was off so his (younger) partner examined me. She noted right away that something was amiss. Exposed bone appeared in the roof of my mouth. She sent me immediately to an oral/maxillofacial surgeon in the next building. That doc, who I've seen before, wasn't in, but his (younger) partner was, and she diagnosed BRONJ. Kudos to these younger doctors, who caught something neither of my older, more experienced practitioners did.

I told her my medical history, concentrating on how I'd taken bisphosphonates for 9+ years, and how her partner had supervised teeth extractions about 5 years ago. 

She explained that osteonecrosis happens when dead bone remains and is not dissolved, and metastatic cancer patients have known for years that bisphosphonates can cause this to happen.

They took more X-rays and photos of the roof of my mouth, and then the new oral surgeon removed some of the necrotic (dead) bone from the roof of my mouth. I received numbing medicine and nitrous oxide, so I wasn't in pain or uncomfortable.

The good news is that the tissue surrounding the dead bone looks healthy. We hope it will grow over the necrotic bone. I'm to go back for a recheck in one week and then again in one month. 

She will send notes to Dr G, who I see tomorrow, and he can decide whether or not to decrease the frequency of my current bisphosphonate, Xgeva.

I went home with a special oral rinse and instructions to dilute with warm water and swish three times a day. 

Just what I needed - yet another medical specialist to deal with yet another issue related to cancer.

Feeling pretty good

I'm ending week four of six on Femara as part of this clinical trial and have felt pretty good throughout. I have enough energy to get through a regular day consisting of walking the dog; at least one trip outside the house, sometimes two; preparing dinner;  heading out again some nights for an evening meeting or choir rehearsal.

Over Seattle's recent couple of sunny days, I've also been able to pull weeds in the garden for an hour or so at a time. This has an effect of increasing my lymphedema, but I've been able to keep it under some control with tight bandaging at night.

The neuropathy in my feet continues to bother me although it too is somewhat improved. My toes and the ball of my left foot are still numb and painful. Walking and standing are uncomfortable but as they're also necessary parts of life, I walk and stand as needed and sit when I can.

My hair has grown enough that I actually need a second haircut. My hair was trimmed nine weeks ago for the first time as it grew in post-chemo. It didn't grow back curly, but wavy enough (my usual) to need a whacking back. No bangs yet -- my hair in front is still very short. But this is much better than being bald!

All in all, I am enjoying a very reasonable quality of life on this clinical trial. In two weeks I will have the third round of scans, tumor markers taken, a brain scan (required follow up after last year's brain metastases treatment with gamma knife radiotherapy), and visits with both Dr G and Dr Gadi. Let's hope that all results indicate that the trial is a success and I should continue on this protocol.

Throwing the frogs (part of the ten plagues at our seder)

FutureMe.org

I just found this amazing website, FutureMe.org:

FutureMe.org is based on the principle that memories are less accurate than e-mails. And we strive for accuracy.

See, usually, it's the future that will reflect back on the present. We here at FutureMe think it's fun to flip that all around.

So send your future self some words of inspiration. Or maybe give 'em swift kick in the pants. Or just share some thoughts on where you'll or what you'll be up to in a year, three years...more? And then we'll do some time travel magic and deliver the letter to you. FutureYou, that is.

I wrote a private letter to myself. And then I searched for breast cancer and metastatic breast cancer, and found some public letters. I decided to write a public but anonymous letter about my dance with mets in the hope that it might help someone else with a similar diagnosis to cope. That one is set to deliver on my mets-iversary, August 20.

Who knows what I will think or where I will be when Future Me gets these letters?