Archive for November, 2008

23
Nov
08

November 23, 2008

Well, I’m cruising along toward the finish on my radiation treatments – four more to go, and I’m very pleased about that. Even though they gave me a “skin break” on the overall irradiation, the area around the scar and towards my armpit where they did the boost is extremely red and quite sensitive. No blisters yet, so it is still considered a first-degree burn, and the aloe gel does help soothe it; but I have to keep applying it, and having fabric rub against the skin for any length of time irritates it badly. I’m back on the general irradiation treatment now, but hopefully this 2-day weekend break, and the 1-day Thanksgiving break will keep it from getting too much worse.

We met with the oncologist on Thursday, and I have the starting date for my chemo: January 9. I will be having the low-dose regimen, where I have chemo three weeks in a row, and one week off. The drug will be Taxol, but the twist is that he also wants to have me use Avastin. I asked him why, since Avastin is normally used for Stage IV (metastatic) cancer. The other use for it is “locally recurrent” cancer, which describes my version. The Avastin will be administered in the first and third weeks of each 4 week period. I will have 3 or 4 months-worth of treatments.

Now, you know me, I am obsessively inclined to research, well, everything. Avastin’s action is anti-angiogenesis, which in real language means that it blocks blood pathways from forming to feed a tumor.

What?

I don’t have a tumor, right? This time, they got it all, right?

Yes, at least if you can trust the pathology report. However, the oncologist said that there isn’t really a standard for treating my type of recurrence – because of its quick return and aggressive growth, the idea is to be as aggressive as possible in its treatment. Hence the radiation to treat the local area, and the chemo to make sure that any stray cancer cells that might have passed through a lymph node without pausing are killed off.

But I do want to talk to him again, because I’m not really sure that I understand just how the Avastin is going to work on any floating cells out there – if it’s floating around in either the lymph or blood, the Taxol is there to kill it; Avastin is targeted to tumors. Perhaps it is just a precaution in case there were microscopic cells parked somewhere that did not show up on my PET scan this summer; or perhaps it is just because I’ve defied the odds already.

Another concern I have about the Avastin is that it causes bleeding problems. Now, the oncologist may have believed he was communicating the risks clearly, and I think for the most part, he did. But just the day before I met with him, there was a study publicized that claims that the risk of blood clots for Avastin patients is 33% higher that in control group studies. Of course, Genentech challenged that conclusion; as who wouldn’t when they make obscene amounts of money off a cash cow like Avastin. And I’ve been told this previously, that cancer patients are “hypercoagulative”, meaning they tend towards clots anyway, due to the cancer. However, the researchers based their findings on differences in clotting episodes between patients given Avastin and control patients that were NOT given Avastin – presumably the control group also had cancer. 33% increase is more than a statistical anomaly, given that both sets of patients should have been at the normal hypercoagulative risk of cancer patients in general.

The problem for me is that I have a history of pulmonary embolism; indeed, that is why the oncologist wanted me to have my ovaries removed – so that I wouldn’t be taking Tamoxifen, which includes an increased risk of clotting.

So why, if that is such a concern at a relatively low risk with Tamoxifen (0.5% for a deep vein thrombosis (leg clot), and 0.3% for pulmonary embolism (lung clot)), isn’t it a concern with a higher risk from Avastin (the *smallest* risk number I can find so far is 14%, which is a 6% increase over the placebo patients)?

Now, I’m interested to note that the clot information that Avastin labeling documents refers to includes both venous and arterial thromboembolic events – so in addition to having an increased chance of DVT or PE, I also have to worry about stroke, TIA, and heart attacks (oh, but those risks are only 4.4%, a mere 2.5% increase over the placebo group. . .).

So I’m not convinced at this point that I want to take my chances with the Avastin. On the other hand, the idea that there could be a stealth tumor out there somewhere is a concern. The researcher cited in the San Francisco Chronicle article, Dr. Shenhong Wu, said “his findings are not a reason to avoid taking Avastin,” and that it was simply a warning for hypervigilance in relation to clot symptoms.

So there you go. Will the cancer get me, or the blood clot? Or will I sail through this as I sailed through the last (unsuccessful) treatment? Stay tuned for the next exciting episode of “As the Epidermis Burns”!

17
Nov
08

November 17, 2008

So I am totally burned. No, really. Literally.

Under my left arm, and on the left side of my breast I was extremely red and in pain Thursday, Friday, and Saturday – guess it’s a good thing they’re giving the rest of my skin a break, because I wouldn’t want to have it all feeling this way. I have a big dark red spot that runs 2 inches vertically downwards from where the upward curve of the clavicle is; and another one under my left arm that is more horizontal. The scar where my sentinal nodes were removed is getting wrinkly because of the swelling around it.

Thank god for Aloe gel!

I’m definitely starting to feel the fatigue – even having a second infusion of caffeine this afternoon didn’t help. I’m just about to go to bed, and hope that I get a good night’s sleep tonight. I am going to take some Ambien, because otherwise I typically wake up an hour or two after I finally get to sleep (no matter how tired I am, it typically takes anywhere from 1/2 hour to 2 hours before I fall asleep). I got basically no sleep Thursday night, and managed to sleep about 5 hours on Friday day – maybe got 6 or 7 hours a night Friday and Saturday nights, but Sunday night, I think I only got about 4. So it’s hard to tell how much of the fatigue is from lack of sleep, and how much of it is from the radiation.

Poor Robin is anxious to go for a walk, and I just don’t have the energy – sitting reading or at the computer is about all I’m up for, although we watched a movie last night – Repo Man. I hadn’t seen that for years, and had forgotten how much it cracked me up. Definitely Plate of Shrimp!

13
Nov
08

November 13, 2008

Well, the Games Party was loads of fun – we had 33 attendees – the one who traveled furthest came from Georgia! We polished off 5-1/2 half-gallons of ice cream, two cans of whipping cream, a giant bag of Doritos, one of Ruffles, one of Fritos, two types of dip, a meat/cheese platter, most of a veggie platter, two bottles of champagne, two punch-bowls-full of Nuclear Punch, a case of beer, a bottle of wine, half a case of sparkling water, and 2 cases of soda.

And we played some games.

A new one that had never hit the party before was “Man Bites Dog”. Neither Brian nor I had the chance to play it that night, but we played it the next day, and it was a blast. Cards with words or short phrases are dealt to each player, and each person tries to make a headline using up to 5 cards. So we came up with some hilarious ones like “Blind Teen Angel Shoots Cop”, and “Angry Tourist Hits Naked Model”.

Another new one was “Pass the Popcorn”, which is a movie trivia game. It was fun, although I’m not really up on movies, so I was surprised at how well I did. Lots of other games were played – Quiddler, Taboo, Munchkin Fu, Boggle, and many others; and of course, we played Midnight Party (quite a while after midnight, however). We slept in on Sunday, went out to brunch with a friend, and lazed around the house for the rest of the afternoon – except for when the neighbor boy came by to ask if Robin could play – they went out and ran around the back yard. I think we have the only Shetland Sheepdog whose idea of a game is to *be* chased, rather than do the chasing. If we ever get him out to the farm again, he’s going to be sadly disappointed that the sheep don’t want to chase him. . .

I am down to only 10 more radiation treatments to go – yay!!! Even now, the worst thing I’ve got going is the radiation burns. Not only do I have them on my front and under my left arm, but because the beam that is treating the sub-clavicular lymph nodes is directly overhead, I have radiation burns on the back of my left shoulder from the radiation exiting my body. How scary is that?

Yesterday I met with the radiation oncologist, and when she saw my burns, she decided it was time to switch to the electron boost on the lumpectomy scar and give the rest of the tissue a little break. This morning was my first boost, and it is pretty much the same as the radiation treatment, just at a different angle. Because they can regulate how deep the electron beam goes, they can position the beam directly above the breast without fear that it will go deep enough to enter your chest cavity and damage your lungs or heart. I’ll have 5 boost treatments, and then finish up with another 6 regular radiation treatments. My last treatment will be the day after Thanksgiving.

Also yesterday, I had a chest x-ray and a follow-up appointment with the pulmonary specialist to find out the status of my sarcoidosis. Guess what? It was all gone, just as if it had never been there. I’m still convinced that the Ambien CR was the cause, but the doctors don’t believe it. They rightly point out that Ambien has exactly the same set of adverse reactions listed, and I’ve never had a problem with plain Ambien. My opinion is that the reason the CR is a problem is because I’m also on Nexium to control my GERD, which reduces my stomach acid to nearly nothing. With Ambien CR, I suspect that the lack of stomach acid means that I didn’t metabolize the Ambien at the “proper” rate that someone with a normal complement of stomach acid would, and that it was essentially causing an overdose. Three days after I stopped taking the Ambien CR, my symptoms were much better; and a week after that, I had basically no symptoms. However, since I’m not going to try taking Ambien CR to recreate the problem just to prove my theory, we’ll probably never know.

When the doctor told me the sarcoidosis was gone, I let out a breath I didn’t know I’d been holding. In spite of having two biopsies that were negative for cancer, I was apparently still worried about it.

And next week, I meet with the oncologist to determine the chemo treatment plan – when, and how many. I basically know the what, unless he’s come up with an alternative: Taxol. I’ll be glad to have the plan – having a goal date to look forward to is very helpful. I’ve been crossing off each date on my calendar after I finish another radiation treatment, and it helps my attitude when I see that I’ve finished more than two-thirds of the treatments.

Next up on the calendar is Thanksgiving – we’re spending it with our good friends Sharon and Gary and their family – they’re awfully good to us!

01
Nov
08

November 1, 2008

The Siege of Gondor, The Return of the King, Part III, The Lord of the Rings, by J.R.R. Tolkien

“In vain men shook their fists at the pitiless foes that swarmed before the Gate. Curses they heeded not, nor understood the tongues of western men, crying with harsh voices like beasts and carrion-birds. But soon there were few left in Minas Tirith who had the heart to stand up and defy the hosts of Mordor. For yet another weapon, swifter than hunger, the Lord of the Dark Tower had: dread and despair.”

. . .

“At length, even the stout-hearted would fling themselves to the ground as the hidden menace passed over them, or they would stand, letting their weapons fall from nerveless hands while into their minds a blackness came, and they thought no more of war, but only of hiding and of crawling, and of death.”

Who will be my Gandalf, bringing light to the darkness? Who will be my Aragorn, braving the Paths of the Dead to bring unexpected aid to fight the battle? Who my Pippin, defying the lord to save the heart of the city? Or the Rohirrim, or the Ents, or the Eagles? And Frodo and Sam – who will destroy the soul of the Dark Lord, freeing life to continue in sunshine and growth, rather than withering night?

You are Brian, you are Robin, you are the friends and family who love me; you are the doctors, the nurses, the technicians, the researchers; you are the legion of survivors, supporters, the stricken, and the casualties. You are my heart, my brain, my soul, and my body. You are the earth, the air, the stars, and the universe, who exist as part of me, as I exist as part of you. You are life and love, given and received. Together we are one individual, one body, one soul, discrete but not separate; together we are the spirit of the universe, strong enough to survive and thrive even through loss and grief, pain and fear. Together we are.




Post archive

November 2008
S M T W T F S
« Oct   Dec »
 1
2345678
9101112131415
16171819202122
23242526272829
30  

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 33 other followers