I’m still sick, and Dr Hamblin died this morning. (So I guess there really isn’t any difference between hospice and palliative care).
This year is definitely not starting out on a good note, and there’s still 358 days left to go.
The optimist in me is telling me things can’t get much worse. Unfortunately, the pessimist in me doesn’t believe that for a minute.
GREAT BIG SIGH!!!
It’s even more so when you’re immune compromised, such as myself, because I can never be sure if my immune system is up to the task of fighting off the illness. Plus I can’t be sure if I’ve just contracted the run of the mill cold, flu or whatever, or if it’s the result of my MCL.
I find myself spending an inordinate amount of time dwelling on how I feel, how soon I’m going to start feeling better, and constantly searching for any evidence of my MCL acting up, such as inspecting for enlarged nodes under my neck and arms.
And that is exactly what I am going through right now. I started feeling more run down than usual about midweek, but after having a cup of hot tea with lemon, I felt much better. Unfortunately, it didn’t last that long, and today my throat is much sorer, I have a minor headache, and I’m just feeling generally bad.
I’ve always managed to recover relatively quickly, without any long lasting side effects, whenever I’ve gotten sick in the past, so I’m hoping this time will be no different. I only wish I knew in advance how it was going to turn out. It would certainly relieve a lot of stress.
There is one upside though, at least I picked a good time to get sick. It’s heavily overcast this morning, and will likely stay that way most of the day, plus the NFL playoffs begin today, so at least I’ll have something to occupy my mind most of the weekend, should I not feel any better tomorrow.
Of course if the Steelers lose tomorrow afternoon, that could result in another set of issues.
I just learned Dr. Hamblin (referenced in my previous post) is actually in palliative care, where the intent is to nurse patients back to better health through nutrition, etc. (?) rather than in hospice care, where they have given up all hope.
That certainly is good news.
Now, hopefully everything else will start turning for the better as well!
WOW! We’re only 3 days into 2012, and already it’s not looking that good.
It actually started New Year’s Eve, when I thought my surround sound audio receiver was malfunctioning [Dolby Digital wasn't being displayed]. It took me 3 days to figure out the problem, which turned out not to be such a problem. Still it was stressful, especially since over the holiday weekend no one was available to contact for support.
Then yesterday the termite inspector came by, and said the house needs to be tented. Jeez, we just had it tented barely 16 months ago, and the termites are [supposedly] back already.
I’m not about to go through another tenting. It’s not the cost so much, which isn’t cheap at about $2K, as much as the hassle of moving out of the house for 3 days, costing at least another $500, dealing with 2 cats, plus having to double plastic wrap all the food and wine to boot. It’s just not worth the hassle. The termites can have the house!
So I contacted another inspector, who treats with Boric Acid (doesn’t require the occupants of the house to move out), and he’s coming on Wednesday to inspect the house. At least if he confirms the findings, and we do decide to treat, we won’t have to move out of the house.
And finally, I just heard that Terry Hamblin isn’t doing so well, and is in a local hospice in England. Dr Hamblin is the first specialist I contacted shortly after being diagnosed with CLL in 2002. He was one of the first to do research in the field of IvGH mutations, and was instrumental in recognizing I had MCL [not CLL], and in my decision to wait and watch, rather than jumping into treatment right away.
Dr. Hamblin retired a few years back, after being diagnosed with cancer, the type I can’t remember. I do know it wasn’t a blood cancer though. Still, he always responded to me personally whenever I had a question or concern, and to the questions of other patients on one of the message boards. He also provided great insight into some the latest treatment protocols and research being conducted on his blog, even when he was receiving treatment for his cancer.
I was fortunate enough to meet Dr. Hamblin for an examination, during the Christmas holiday in Bournemouth, England, in 2002. A visit I will not easily forget. My heart goes out to him and his family. He will be sorely missed.
Can it really be called a downside?
According to Joseph M. Connors, MD, Clinical Professor and Director of the BC Cancer Agency’s Centre for Lymphoid Cancer, Vancouver, British Columbia, in an article in the ASCO Post, the downside to Canadian health care is
We [the Canadian health care system] don’t get to give patients treatments unless they have proven benefit, so we have an entire system devoted to examining what evidence justifies which treatments…….
……….I [Dr. Conners] cannot give a drug without evidence-based proof that the drug has efficacy and works better than the less-costly alternatives in the particular disease I’m treating. So the drawback to a centralized system is that it constrains innovative behavior, is resistant to change, and is slow to introduce new approaches. The system waits for adequate evidence before moving ahead…….
Well, I’m not so sure I’d categorize that as a downside, and neither do I believe it constrains innovation.
Just because something is new, and may have shown efficacy in a petri dish, or even in a stage 1 trial, doesn’t necessarily mean it will be effective when given to humans. And let’s not forget about potential side effects of rushing treatments to market. You only have to look at drugs such as Thalidomide, and more recently Avastin, to recognize the flaw in that thinking.
And besides, isn’t that what clinical trials are for? Something else Canadians and Europeans have far greater access to than those in the US, that is unless you
have adequate coverage or can pay out of pocket
I don’t know about everyone else, but if that’s the only downside to Canadian health care, I’m willing to take my chances!
I don’t usually post about all the latest advancements in lymphoma research, mostly because I don’t keep up with it so much anymore (it seem’s I got a little burned out doing so much of it early on), but also because there just hasn’t been anything I considered to be of note.
This year though, seems to be different. I’ve started doing a little more reading and investigating of some of the latest happenings in lymphoma/leukemia research, and while there still isn’t much I’m encouraged about (anything that is truly interesting is still in early development or clinical trials), there were three reports I thought worth mentioning.
The first one was a phase 3 trial, showing that Maintenance Rituximab to be no better than Rituximab administered upon disease progression. While this may not seem so earth shattering to some, I think any research proving less is better, i.e. reducing the number and frequency of treatments, can only be beneficial, and lead to a better quality of life. (You might want to show this one to your hematologist, in case they haven’t seen it yet.)
A second study, just finishing stage 2 trials, suggests Obinutuzumab is better than Rituxan.
One of my biggest complaints about a lot of research conducted by the pharmaceutical industry is instead of trying to develop any new breakthrough drugs, they focus their attention more on already existing, effective and of course profitable drugs, so when their patents run out they can still retain their profitability.
Obinutuzumab, a glycoengineered, humanized anti-CD20 monoclonal antibody, is designed with exactly that in mind. It’s designed to replace Rituxan, a chimeric (mouse and human) anti-CD20 monoclonal antibody, and already proven to be very efficacious.
Still, anything that has the potential to be better than Rituxan, already considered a wonder drug, has to be encouraging.
The final study, and one that hits much closer to home, are from the results of a Phase 2 study showing great promise for a lymphoma vaccine. I could elaborate some on this article, but I think the link provided does a better job of explaining the results than I could ever do.
Yes, I know it’s only through Stage 2 trials, and the completion of a Phase 3 trial could be quite a few years down the road, I’m still encouraged by the results. I’ve always thought the application of a vaccine to treat cancer had the greatest promise for producing a cure with the least amount of adverse side effects.
Happy reading!
Hi, my name is Marc [that's my wife Edie beside me], and I have Mantle Cell Lymphoma, a typically aggressive form of lymphoma, except it so seems in my case.
I was diagnosed over 9 years ago, and have managed to survive since then without treatment, by following a few simple rules. Eat a [mostly] well balanced diet, exercise (cycling, at least up until recently), abstaining from taking supplements or any medications, drinking 5 to 6 cups of [Japanese] green tea a day, and most importantly [lots of good wine], flossing and brushing my teeth twice a day, everyday.
I started this blog mainly to chronicle my life, putting down in writing what goes through the mind of a cancer survivor (although I have been seen straying into unrelated areas on occasion), and along the way help educate others about lymphomas and other blood cancers, and filter out some of the hype and misinformation so often associated with the internet, which unfortunately there is plenty.
You can read a lot more about me by clicking here