Deep thoughts [AKA A little rant]

 Health Care, My MCL, Politics, Treatments  No Responses »
Nov 102011
 

I was thinking last night (I do that whenever I have trouble sleeping), and I’ve come to the realization, in the nearly 10 years since my diagnosis with MCL (when I was personally awoken to the issue of cancer), there has been a lot of research done, and too many to fathom clinical trials performed, yet there has been very little [monumental] advancement in the way we deal with and treat cancer.

We’ve managed to map the entire human genome. We’ve even come close to discovering the causes of [at least one] cancer, yet there is still no cure, and our approach to treating cancer remains, as it has been for the past 50+ years, to do nothing more than infuse deadly chemicals into the body, in hopes of destroying the cancerous cells. Even one of the biggest advances recently in the treatment of lymphoma, has been the reemergence of Bendamustine, an alkylating agent developed in East Germany in the 1960′s.

Yeah, there have been strides made in the use of stem cell transplantation (SCT), and there have even been some new blockbuster drugs that have come on to the market, e.g. Rituxan, Gleevic and Velcade, but they have done little, aside from maybe delaying the inevitable for a few more years, to advance a cure. And even those approaches have their limitations, especially in the case of SCT’s, which can produce debilitating side effects, i.e. graft vs host disease (GVHD), that in some cases may be worse than the disease.

You’d just think after all these years, with all the great minds and other resources available in this country, and around the world, there would have been greater strides made towards finding a cure for cancer, or at the very least develop new and safer drugs for the treatment of cancer.

What’s even more depressing is with the political upheaval in the US, it appears further advancements related to all types of health issues will be greatly hindered. There are already critical drug shortages showing up around the country, and expected cuts to funding for the National Institute of Health (NIH), portend few [if any] advancements for the foreseeable future.

The principle reason I’ve delayed treatment so long has been the hope something better would come along, but it seems I’m going to have to wait just a little [a lot] longer.

Better late than never

 General Health, My MCL, Treatments  1 Response »
Oct 102011
 

Well, I managed to survive my colonography. I’m just not sure it’s a preferred alternative to a standard colonoscopy.

I still had to go through the cleansing process, and to my surprise they still had to stick this instrument (for lack of the correct term) up my butt, in order to fill my colon with air, before starting the scan. (For some reason, I didn’t think I was going to have to endure all that.)

The hardest part was trying to relax enough to keep from pushing the “instrument” back out, which seemed like it could easily be done.

Plus, the scan had to be performed while on my stomach and back. This required me to turn over half way through the procedure, which was made more problematic by that “instrument” sticking out my backside.

I can only imagine how comical this must have all been to those in attendance.

All I will add is, if you don’t have a good reason for a colonography, e.g. an enlarged spleen, go with a colonoscopy. I think it takes less time, and you should be able to request sedation if you’re so inclined.

Now all that remains is finding out the results. I’m not in any hurry, since I’m not sure how I’ll respond or what I’ll decide to do should the results be unfavorable, so I’ll just wait for my appointment the beginning of November.

I doubt that I’d be willing to go through a colonography anytime soon, so I am hoping for the best.

Stay tuned!

Cancer Treatment! Worse than the disease?

 General Health, My MCL, Treatments  1 Response »
Aug 152011
 

While advances in the treatment of cancer are continuously being made, I have always had an overriding belief that “the cure is worse than the disease”. I have just never been able to adequately articulate why I believe that to be so, that is until now.

I only wish I had seen this great analogy, on how cancer treatments work, when I was first diagnosed with MCL, and friends and acquaintances would ask why I wasn’t starting treatment right away.

While this person was responding to a promising new technology, CART (Chimeric Antigen Receptor T-cell) therapy, it’s still represents an accurate assessment of the current state of all cancer treatment.

I live in the wilderness with many species of wild and domestic animals like Coyotes, Fisher Cats, Fox, Bobcats, Dogs, Cats and yes Bears. Many of these animals help keep a balance of nature and rarely bother humans but sometimes bears can become dangerous, culminating in the rare attack on humans. Let’s say a particularly dangerous Bear population begins to breed like wildfire and the threat to me becomes a crisis for which my Atlatl and 12 gage shot gun are no longer able to handle. Along comes a laid off car salesman offering to sell me a brace of T-Rex dinosaurs that he guaranties will eat up the nasty Bear clan. Wow! this is just what I need…… but I don’t notice on the contract that I sign and in fine print of course, that although the T-Rexes have proven voracious they are pretty dumb due to small cranial capacity. The guy who trained the T-Rexes to eat my nasty Bears could not get the beasts to recognize just the bad Bears of the nasty Bear clan from the good bears. Training quit at the level where the T-Rexes could recognize and target all four legged fur bearing animals.

The nasty Bear horde threat, being so urgent, I hastily put my money down and let the T-Rexes loose. They clean out the nasty Bears in short order along with the good bears the fox, coyote, bobcat, fisher, domestic cats, dogs and my drunk hirsute neighbor who had been crawling up the path to his cabin one night. Now, losing my garrulous hirsute neighbor was no big loss, I hasten to admit, but soon the environment was overrun by rats and mice who carried the fleas from which I have now contracted bubonic plague. The T-Rexes, having eaten all the animals they could recognize were looking curiously in my direction.

……………….

He goes on to explain the challenges in treating cancer which I add here just for some additional insight

The challenge for developing CLL cytotoxic agents, specific to our cancer cells, is that an idiotype (unique to the cancer cell) marker on the surface of the B-cancer cells does not exist or has not been found or cannot yet be exploited for bio-engineering of T-cells or mAbs (monoclonal antibodies like Rituximab/Ofatumumab). The inefficiency of Rituxan/Ofatumumab may prove to be a blessing for those patients who get a good response and who do not react badly, like me, in that some of the good guy B cells are left after therapy and may confer some immune functionality although too many of the bad guys are also left who evolve to resist repeated therapy.

He ends with a statement I find very appropriate

……Live in the moment, and practice gratitude for all that we have. Increasing options abound.

Rituxan: It’s not chemo, but…..

 My MCL, Treatments  No Responses »
Mar 082011
 

Every now and then I actually post something pertinent to my disease, and while I’m not really posting anything here, I am directing you to another website, which I consider of invaluable importance for anyone suffering with leukemia or lymphoma.

Rituxan is one of those drugs that has definitely proven its worth over time. Used in combination with other chemo drugs [and often times alone], it has increased the period of progression free survival (PFS), and the overall survival (OS) for those suffering from leukemia or lymphoma.

But despite being a wonder drug, and not really considered chemotherapy per se, that doesn’t mean it isn’t without its side effects and complications. Nor does it mean it won’t [still] be my drug of choice (initially as a single agent therapy), when the time comes to start treatment, even after reading this article.

So if you’re one of those people with leukemia or lymphoma, this is definitely a must read, as you either have or will be taking this drug at some point, and the article is helpful in explaining how Rituxan works, and the long term implications of extended use.

And while you’re at it, you might consider perusing the site for other useful information. There is a wealth of knowledge there, and Chaya Venkat, the author, is one of those people, who despite not being a doctor, has the innate ability to describe things in terms everyone can comprehend. She is also one of the most knowledgeable people I have come across, and whose motives I believe above reproach.

More on alternative treatments

 Treatments  5 Responses »
Sep 112010
 

As most of you [should] know, I’m not a fan of vitamins, supplements or anything supposedly designed to boost your immune system. I think they’re a scam (and I know about scams), but even if you could boost your immune system, why would you want to? An over active immune system can cause just as much harm as one that is malfunctioning. Even more simply put, an over active (boosted) immune system is a malfunctioning immune system.

Still just my saying so, hasn’t stopped [no matter how hard I try] the plethora of products on the market (with new ones coming every day), nor the people naive enough, IMO, to use them.

Here’s an example of a post, from a member of the NHL message board, I found today of particular note. It even includes a new remedy I hadn’t heard of before.

I have followed a mainly macrobiotic or raw food diet, always organic, for over 20 years.  I rarely had a mere sniffle during that time, so I do believe diet is protective of our health (but darn it–it apparently doesn’t prevent NHL).

What I find truly amazing here is, this person actually recognizes their “macrobiotic or raw food diet” didn’t prevent them from contracting NHL, but still believes it’s “protective of our health”. I wonder if they ever considered it was the “macrobiotic or raw food diet” which actually caused them to contract NHL?

I do however concur that diet does play an important role in our health. I just don’t believe you need to go to extremes. A well balanced diet of fruits, vegetables, and proteins is all anyone should ever need.

But there’s more,

….. last year, while I was receiving Rituxan, I began to take extra measures to protect myself from all those H1N1 and other flu bugs flying around.  Everyday I add essential oil (tea tree, anise seed, and soon to be oregano) to a pan of boiling water and breathe the vapor for 3-4 minutes.  This is suppose to help kills germ and fungus that have been living in the sinuses for God only knows how long.  When I fly, I load up on that AirBorne, and apply a little Bacitracin to the inside edges of my nostrils.  I hand sanitize like crazy.  These precautions have protected me “from the onslaught of inconsiderate coughers and sneezers on the plane” that don’t cover their mouths!

[And BTW] — I did get a flu shot last November, but I did not get the H1N1.

At least this person recognizes the necessity of cleaning their hands often, but Bacitracin? Bacitracin is an antibiotic used to treat or prevent a skin infection. It’s not going to protect you from getting sick. Besides why wouldn’t you use Neosporin which has two other antibiotics, and provides 3 times the [non] protection.

I won’t even comment on “the essential oil (tea tree, anise seed, and soon to be oregano)”. Oregano??? Give me a break, besides, it was the flu shot that likely did more to prevent getting the flu than any of those other remedies.

As far as Airborne or other supposed remedies protecting you “from the onslaught of inconsiderate coughers and sneezers on [a] plane,” I say hogwash. While obviously if someone coughs directly on you, that would be a problem (that would be a problem on the ground as well), in reality the air in a aircraft is recirculated every 2 to 3 minutes, and makes traveling on a plane a much healthier experience than sitting on a train, in a movie theater or even in your own home. If someone gets sick after flying, it wasn’t from the air on the aircraft.

And now here’s the kicker.

Re: the manuka honey, I take a heaping teaspoon first thing every morning before I eat anything.  It is the raw, organic 15+ from New Zealand.  Heating this honey destroys its antibiotic power, so you definitely want the raw honey.  However, I might be a little frightened to use it if my immunity was very low.  It’s kind of an “oxymoronish” situation– where raw indicates that something could harbor germs –  yet boiling away the supposed germs would void the antibiotic power of the honey!  Let the doctor decide this one, especially if you are currently on chemo.

Well, let me tell you this, if you have NHL, you have a reduced (compromised) immune system, so that’s one good reason for not taking it. And what the heck is Manuka honey anyways? I couldn’t find anything even on the internet touting it’s benefits. Maybe because it’s from New Zealand it must be good. And why would you be concerned with eating raw honey, and not a “macrobiotic or [organic] raw food diet”? Organic doesn’t mean germ free!

It continues to boggle my mind how some people can be so gullible. People only hear what they want to hear. The problem is too often what they hear and the truth are two different things. But I guess when you’re grasping at straws, the concepts of truth and logic go out the window.

Just my opinion!

Vitamin D deficiency and effects on cancer

 General Health, My MCL, Treatments  4 Responses »
Jul 022010
 

I had an appointment with my oncologist on Tuesday, and the one thing of note, besides the fact my numbers were essentially unchanged, was she made mention of the benefits discovered in cancer progression by increasing Vitamin D levels.

She researched other patients of hers, and discovered they were essentially all Vitamin D deficient, and recommended taking a Vitamin D supplement (1000 IU per day).

Considering the constant reinforcement [hype] by the dermatology lobby, and sun screen manufacturers, of the hazards of extended exposure to sunlight, the major source of Vitamin D, and me being the uber cynicist I am, I find that fact very believable.

She also knows I’m not much into taking supplements, plus I do get a lot of unprotected sun exposure when I ride my bike, but she put it out there for me to at least investigate.

So I did some research on the subject, and came across this very interesting article on the benefits of Vitamin D, performed at the Mayo Clinic, in newly diagnosed Diffuse Large B Cell Lymphoma (DLBCL) patients.

Of course it was only one study, a relatively small sample, and it wasn’t even performed on Mantle Cell Lymphoma patients, so how much benefit it will be to me or others is still open to question. Heck, I’m not even sure I’m Vitamin D deficient (that will be checked next month), but none the less, the data is compelling, and IMO worth further consideration, if not for me, then at least others.

So even if you don’t like taking supplements [like myself], at least have your Vitamin D levels checked, and consider spending more time outside exposed to the sun, without using any sun block. If nothing else, at least it will get you out of the house, and doing something a little more beneficial than simply sitting around the house reading some blog. :)

Who knows, they may even discover it’s just one more benefit to exercising outside, beyond the obvious.

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