If Mantle Cell Lymphoma can’t get me

 General Health, Treatments  3 Responses »
May 112012
 

Hopefully a basal cell carcinoma can’t either.

My dermatologist called Friday evening, and informed me the [small] growth on my forehead (that he biopsied two weeks ago) was a basal cell carcinoma, and since he had a cancellation on his schedule, he could squeeze me in Monday morning to have it removed.

The operation seems simple enough. It’s outpatient surgery, using a local anesthetic, and I can go home immediately after it’s finished. The only issue being I can’t exert myself at all for the rest of the day.

Normally that wouldn’t be so bad, except Monday is my bowling day, but I think my health is just a little more important, and there’ll be plenty more days to bowl. Plus I’d have to wait another 6 weeks if I didn’t do it this Monday, and I’m not willing to do that.

One other thing was the doctor informed me I shouldn’t drink any alcohol, as that can sometimes cause excessive bleeding. I only wish he’d told me that before I opened a good bottle of Pinot Noir for dinner. So I just drank a little less than I normally would have.

So now it’s just more wait and worry, but I should be used to that by now. After all, I’ve been doing for the past 10+ years.

Legitimate, opportunistic, or ????

 Treatments  1 Response »
May 072012
 

Glenn Sabin, a reported 21 year Chronic Lymphocytic Leukemia (CLL) survivor, who, other than having had a splenectomy soon after diagnosis, has not received any conventional chemotherapy treatment. This is even after

……experiencing the full force and effect of his leukemia [in 2003]. A low grade fever and night sweats persisted for months. Glenn’s hematocrit dipped to 22 as severe hemolytic anemia set in…….

Believable? Well yeah, sorta, kinda, maybe.

Certainly surviving 21 years with CLL is believable (even without treatment). There’s lots of evidence of that. Even surviving a splenectomy for that long is believable, despite the fact after a splenectomy, not only do the other organs take over the functions of the spleen, they typically also take over the leukemia/lymphoma.

I just have a problem with everything else.

I especially have a problem with after having a full blown attack of CLL, i.e. low hematocrit, night sweats etc. he was able to obtain a complete remission without any chemotherapy, and by simply using a concept he calls integrative medicine.

My issue being nowhere is the concept of integrative medicine clearly explained. Nowhere does he identify what approach(es) he took. Did he take any medications?  Did he take vitamins and supplements? Did he change his diet? I couldn’t find anything specific, other than the fact he embraces yoga.

Instead, he starts a company, FON Therapeutics,

…… [which] provides integrative oncology and integrative medicine centers consulting services focused on growing clinic utilization—driven by the right marketing, right messaging, proper brand positioning, all rooted in a business model that works.

So is he legit? I don’t know for sure, but the cynic in me tells me he isn’t.

The cynic in me says, if he’s not willing to more clearly explain his approach, and produce empirical evidence, backed up by clinical trials of the effectiveness of that approach, then he is nothing more than another scam artist trying to capitalize on his [supposed] good fortune, and preying on the hopes and fears of desperate people.

But you are free to make your own decisions!

It’s a beautiful day, and………

 Edie, Treatments  2 Responses »
Mar 102012
 

I’m stuck lying around the house with a bad back [again]. (Fortunately there is a golf tournament to occupy me somewhat.) Don’t know what I did to deserve it, but I’ve found that often to be the case.

So since it’s been over a week since I’ve posted anything, I thought I’d take this opportunity to just ‘ramble’ about a few things that come to mind.

Edie is still on Velcade + Dex maintenance therapy. She switched to every other week, because every week was just getting to be too much, and also started subcutaneous injections of the Velcade instead of the standard infusion. While the research seems to indicate there is no difference between subcutaneous injections and infusions, I’m not so confident. Especially now that her counts have started to rise slightly. That of course could be the result of going to every other week therapy rather than every week.

She gets another blood test on Monday, and has an appointment with her oncologist and another Velcade injection on Tuesday, so we’ll know more after that, and possibly make adjustments.

As for me, I’m the same, except for the bad back that is. At least I hope that’s the case. I am still a little concerned about my IGA and IGM numbers being slightly abnormal, but I think I can wait for my next appointment in May to see if there is a trend developing.

I also received an email earlier in the week, from another MCL’r, that I feel the need to comment on. Based on some of the things this person mentioned, I thought they might have been taking some of my rantings about not rushing into treatment, or the cure being worse than the disease, a little too much to heart.

Fortunately reason prevailed, and whether it was my response, or some other factor, she decided to start treatment with Rituxan as a single agent.

While I am certainly an advocate of not rushing into treatment, I am not, nor have I ever advocated against conventional treatments. I have also never been shy about expressing my opposition to so called “alternative treatments” of any kind, as they are nothing more than a scam designed to separate you from your money.

But when the time comes, when symptoms become overwhelming [even before that in most cases], and especially when quality of life issues become a factor, there is no choice. Conventional therapy is the only way. The only thing being, I would try to start with the least toxic treatment first, and then go for the “big guns” as needed.

It’s not called for-profit health care for no reason

 Health Care, Treatments  1 Response »
Feb 202012
 

I’ve been told on occasion by a doctor friend of mine, after one of my posts about how poorly or depressed I’m feeling, that I should take an anti-depressant. As most of you [should] know, I have always staunchly refused to do so, but not because I didn’t think they worked. It’s because I felt it wasn’t necessary, could do more harm than good, and I could deal with such feelings better without them.

And after watching last nights 60 Minutes, I feel vindicated in my approach. There now appears to be some evidence not only supporting my belief, but also casting doubts on the efficacy of anti-depressant drugs.

But why this should come as a surprise to anyone is beyond me.

I have constantly been preaching on the ineffectiveness of vitamins and supplements, and how you can’t boost your immune system. I’ve always believed it is simply a scam perpetrated by the vitamin and supplement industry to separate you from your hard earned money. Everything you need to maintain proper health and nutrition is available in it’s natural state.

So why should drugs be any different?

In a ‘for-profit’ health care system, with so much money involved, and so much time to bring new drugs to market, there will always be the incentive to skew results in the pharmaceutical industry’s favor, highlighting the good results, and sweeping the bad results under the carpet.

So it’s not surprising the pharmaceutical industry is fighting tooth and nail to dispel the [compelling] research of Dr. Kirsch, after all this is an $11.3 billion industry, and could put a serious crimp in the profits of the pharmaceutical industry. But regardless of the final outcome, this should be a wake up call, and a learning lesson to everyone.

BE SKEPTICAL OF EVERYTHING! (And not just in the health care arena.) Don’t be fooled by special interests, who appear authentic and concerned, but are truly only looking out for their best interests, and their bottom lines.

Why superstars don’t make good coaches

 My MCL, Philosophy, Treatments  2 Responses »
Feb 132012
 

The reason being, everything comes easy to superstars, and they expect everyone to perform at the level they performed. They don’t understand the problems and pitfalls of doing what they know best, because they’ve never experienced any, so they have great difficulty teaching others how to avoid something they know little about.

This is true not only in sports. It’s true in all walks of life, and in everything we do. [Even politics]

I, for one, find it difficult to understand how patients can unquestionably listen to their doctor, and jump into treatment right away, without considering all the consequences, and at least doing some research into all the possible options. I find it hard to believe any diagnosis of cancer is so advanced there isn’t even sufficient time to seek a second opinion.

And maybe 4 days was enough for the person who posted on Facebook, that her husband was diagnosed with lymphoma last Monday, and started treatment that Friday, to have done all the research, and seek a second opinion. I just don’t think so.

I don’t think so because it took me a lot longer than 4 days (more than a year) to research my lymphoma, and seek a 2nd and 3rd opinion, before finally deciding not to seek any treatment right away. A decision, which incidentally might have been a lot different, had I only listened to my first doctors, and even some other, early advice from some very learned individuals in the field of lymphoma.

So why doesn’t everyone think like me? Am I one of those superstars that everything comes easy to? Do I fail to understand that everyone doesn’t see the world as I do, nor have the where with all to spend the time to do the research necessary to be able to decide on the best approach? [Or their conditions may be more dire than mine.]

I know I’ve tried to teach some of those concepts with postings to my blog, and I’m not trying to tell people that early treatment isn’t the best approach, because in many case it may be the only choice. I just wish people would spend a little more time thinking [researching] before making hasty decisions that may affect them for many years down the road.

That might actually be good advice for everyone, even for those who are healthy, and not facing a life threatening disease.

 Posted by at 9:58 am

Some interesting advancements in lymphoma research

 My MCL, Treatments  No Responses »
Dec 262011
 

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!

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