11 September 2008

 

Chemo is suddenly over again, for now

So, how do I put this? The chemotherapy isn't working (at least, not well enough), so my doctors have cancelled it and we're looking for something else to keep the cancer from progressing. That may include different, more experimental forms of chemo, or surgical radiofrequency ablation (RFA) of the spots in my lungs. In my initial reading, the RFA approach looks like it could be promising.

My emotions about this development are all over the place. To know that the largest metastatic lesion in my lungs has grown from 1.4 cm to 1.6 cm in diameter, and the smaller one from 1 cm to 1.4 cm, is dismaying, because the panitumumab and irinotecan I was taking weren't doing the job of stopping or shrinking those tumours. On the other hand, I may have been misinformed about there being four metastases; there might be only two. I'm not sure and will have to ask. They are small, and not growing extremely fast.

In addition to that, now I can avoid spending two days in bed every two weeks, feeling like I'm going to throw up. My pervasive dry skin and facial rash, although under control, should now abate as the chemo drugs flush out of my system. Finally, since it will take a few weeks to figure out and schedule my next treatments, whatever they are, I'm taking the chance to try to have my ileostomy surgically reversed, so that my intestines function normally again for the first time in well over a year and I can ditch the colostomy bags forever. That could happen in less than a month.

We found all this out a couple of days ago, which happened to be my wife Air's 40th birthday. Fortunately, we'd already had a big family-and-friends barbecue last weekend to celebrate that (plus my mom's upcoming 70th), so the news only dampered the day itself, not the party. Last night she and I went for dinner at the beautiful Horizons restaurant here in Burnaby, to mark her birthday and to celebrate at least the end of chemo, for now.

This all reminds me that while my medical team and I keep looking for a cure, something to destroy the cancer completely, more likely we're just buying me time. How much time, no one knows. Months? Years? Right now, other than the dry skin, I feel better than I have at any time since my diagnosis in January 2007. I feel less like a dead man walking than ever, but the future remains a mystery.

Yet on September 11, another dreadful anniversary, the weather here in Vancouver is once again beautiful, and there's laundry to be done. Time to load up the iPod and get to it.

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# 9:53 AM

Comments:

Godspeed, [del]John Glenn[/del] Derek Miller.
# posted by Anonymous Anonymous : 11 September, 2008 12:41
 
Oh Derek I'm so sorry. Good news about the ileostomy though.
# posted by Blogger Melanie : 11 September, 2008 17:00
 
Start checking into DNA based targeted drug therapies. And also into Avastin, which is supposed to be good for lung tumors.

I know there is more to do than chemo these days. How much do you know about nutrition? There are nutritionists who specialize in cancer diets. They build the immune system, but not only for chemo. You will have to become more aggressive yourself in researching therapies. Most people who have been victorious have been so using multiple therapies, both allopathic and alternative. (I'm the widow of a doctor who died of cancer because he believed too much in Western medicine.)
# posted by Blogger Buppy the Puppy : 11 September, 2008 18:07
 
Avastin is already off the table for me, pretty much, because I've had it twice: once for six weeks or so in conjunction with other chemo and radiation in the spring of 2007, and once for seven months from last October through May 2008. It didn't help much.

Similarly, if I understand you correctly, the panitumumab I just stopped taking is one of the DNA-based targeted drugs you refer to, and again it did little for me.

I will be looking into other alternatives. Yes, there are dietary and other complementary measures that I can consider, but I'm also in favour of looking at those with the best evidence behind them.

Finally, while it's possible that your husband died because he believed too much in Western medicine, it's also quite possible, indeed likely, that he might have died no matter what he tried. Some of us beat our madly overgrowing cells, and some of us don't, and it's not easy to know why it goes one way or another.

What I can do is keep trying.
# posted by Blogger Derek : 11 September, 2008 21:19
 
Sorry to hear that the treatment isn't working for you but I'm very glad you're considering other options and you're doing well despite.

I love reading your blog and have been doing so since you diagnosed even though this is the first time I've commented (I think?). You always have something interesting, unique and inspirational to say.

Looking forward to reading more.

Thanks!
# posted by Anonymous Randy Aldrich : 12 September, 2008 10:03
 
i would consider RFA. RFA is essentially going to be locoregional therapy which would be useful if you have less than ideally 3 lesions. not all lung tumors are amenable to RFA. RFA is not meant as a cure but more as a local control i.e. trying to make your disease more chronic and attack lesions as they come. do you have liver mets?
# posted by Anonymous Anonymous : 12 September, 2008 11:14
 
Nope. As far as we can tell, the lungs are it. So I'll see what the doctors say.
# posted by Blogger Derek : 12 September, 2008 12:02
 
all the best
# posted by Anonymous g-a-b : 15 September, 2008 23:32
 
Derek, I happened to be looking at(googling)false creek surgical center, (stumbled across your page here) to perform a lung drainage procedure for a patient who has lung cancer, our center here in Vancouver treats all cancers using our own highly successful protocols, outside doctors are always surprised to see cancers leave the body so quickly. We haven't had any failures as of yet, knock on wood! Anyways, the treatment cost runs around 22000.00 per month, which is prohibitive in many cases, the good news is, it works, the treatment usually takes 6 to 8 weeks, and we haven't had any reccurance. Anyways, Im off to Richmond to pick up some IV's for the patient. You have a great day, keep up the fight and drop the chemo before its too late. Proper treatment while you still can is of vital importance.Remember no sugar in your diet!!! Buppy the puppy there sort of has the right idea. No need to die of cancer or chemo these days.Have a great day and listen to your own instincts, not doctors with a lousy track records! Clay
# posted by Anonymous Clay : 25 September, 2008 11:30
 
PS I bet if any of those supportive doctors of yours saw the cure, they wouldn't admit it to anyone thereafter, as we have seen a dozen times, oncologists keep it a secret for the most part, don't ask me why. I finally resigned from the company I founded, which was there to save cancer patients, because the uphill battle against mainstream was so tough. I went into mining and resources, to pay the bills, since the whole medical community(almost) was against us, it was tough to even pay the lease on our office. Thats why almost all the good clinics are overseas. I have maintained a network, and have an affiliate clinic, which is easier, as a sideline, as I lost my grandmother to cancer before I learned the truth about the whole thing. Recover is only a month or two away, and we lose fifty thousand canadians per year over a money issue. Its beyond criminal. Sorry, I let myself get all upset every time I think about it. Best regards. Clay
# posted by Anonymous clay : 25 September, 2008 11:39
 
Clay, I'm not a big believer in conspiracy theories, and from everything I can see, the medical people working on my treatment would do anything to find a truly effective treatment for my disease. They are human beings who see people suffer all the time, and work hard to alleviate or avoid that suffering.

And when they have found effective treatments with solid research protocols, the results are remarkable. With chemo, even!

Do you have non-anecdotal evidence that your treatments work, besides your word in blog comments? What is your training and background? Do you have some statistically significant, double-blind and peer-reviewed studies on your clinic's treatment methods? Can you provide details on what it is you do, and evidence of the mechanisms of effectiveness? Or even some contact information?

You haven't even named your clinic (the False Creek Centre you cite seems to specialize in cosmetic surgery, with no mention of cancer treatment). That doesn't give me much confidence.
# posted by Blogger Derek : 25 September, 2008 11:58