LIVING WITH MCL

And what a chore it was getting it! Received a call from the Kaiser pharmacy yesterday regarding the Pomalyst Edie is about to start taking for her Multiple Myeloma. Edie wasn't available at the time, so I attempted to deal with the pharmacists questions. While I only spent just over 20 minutes on the phone, it felt like an eternity, listening to the pharmacist go over all the concerns with the drug, including the cost, which was A LOT more expensive than I thought. And this was on top of the 2+ hours Edie spent with a nurse a week or so ago, signing all sorts of documents, and going over, I'm sure much of what I went over again yesterday. I understand all the concerns Celgene has with using this drug. Pomalyst, AKA Pomalidomide, is the second iteration of Thalidomide  (the first being Revlimid), the sleeping pill/tranquilizer that created such an uproar in the early 60's, due to its link to birth defects in babies born to mothers taking the drug, but this just seemed over...

I'm not 100% convinced yet, especially after hearing terms like 'casein', "enzymes', or 'making the body more acidic', but the evidence sure seems to be mounting. From  Huffpost Healthy Living KF:  What exactly is so bad about animal protein? TCC:  I don't choose the word "exactly" because it suggests something very specific. Rather, casein causes a broad spectrum of adverse effects. Among other fundamental effects, it makes the body more acidic, alters the mix of hormones and modifies important enzyme activities, each of which can cause a broad array of more specific effects. One of these effects is its ability to promote cancer growth (by operating on key enzyme systems, by increasing hormone growth factors and by modifying the tissue acidity). Another is its ability to increase blood cholesterol (by modifying enzyme activities) and to enhance atherogenesis, which is the early stage of cardiovascular disease. And finally, although these are ...

That's how long I've been off the Oxycodon, and while the pain is not intolerable, I know I could be feeling a lot better right now after just one 5 mg tablet. My concern is I don't want to become addicted, which is a huge fear I have (there's even an Oxycodon addiction website  I just came across with counselors ready to talk), nor experience any of the myriad of side effects associated with this drug, but neither do I want to feel uncomfortable all the time. It's been 7 weeks, and I am making progress. I've managed to get the dose down to 2 to 3 per day, from the 5 to 6 per day I was taking the Oxycodon about a month ago, but I'm wondering if it is normal to still be needing it. Shouldn't I start seeing some more improvement by now? So in an attempt to avoid, or at least delay taking another Oxycodon, I thought I would just vent a little here, in the hope someone, besides the countless number of spammers who have been inundating me with spam comments l...

and am now safely home, free of the risk of hospital born infections (MRSA). Of course I'm not out of the woods yet, risks still abound, and I am on a plethora of meditations to help mitigate the effects. But at least I can get back to a somewhat normal routine. (Although Edie will have it a little harder taking care of me.) I'm also not much interested in sitting in front of a computer blogging, but I wanted to let everyone know I am doing fine. No one could have ever prepared me for what this operation entailed, and if they tried, I probably wouldn't have believed them. This operation was so much more difficult than I could have ever imagined. The best way to describe it would simply be to say, you do not want to have to go through this operation, and you definitely don't want to do it a second time. I will update my progress as I am able.

At long last, a doctor visited me this morning, and informed me my surgery has been scheduled for Tuesday. (Neglected to ask what time.) it wasn't a Cardiologist, but rather an orthopedic doctor who stopped by. I thought that strange, but he did explain why. I just promptly forgot the reason he gave. I'm guessing he just happened to be the one available at the moment. So I guess that's good. I'm just not sure why, having just read and signed the consent form. It must be simply because it's a change from the past few days of total boredom. Now I've got something more definitive to worry about.

I received some interesting criticism the other day for my stance on alternative therapies. I ......... cannot for the life of me understand why you would not use supplementation and then use an over the counter poisonous liquid which has proven liver toxicity. Especially while taking a statin. She was referring to the use of an over the counter cough medication, I have been taking to help ease the symptoms of my upper respiratory infection. I did this once and vow to never use it again! I have gotten off Lipitor by using Nicotinic Acid and getting much better results but still use COQ10 to protect Liver as you must do while taking Statins. If you are not using CoQ10, I urge you to research this issue. MCL reduces your D3 and should be taken everyday! I use 5000mgs a day. I was sorta taken aback. She was partially correct. I'm against taking supplements, but when necessary I don't have a problem taking over the counter medication, when my ailments finally get the better of me. ...

I know I've made that same claim numerous times in the past, but for some reason, this time feels different. For the third time this year I've been stricken with an upper respiratory infection, leaving me sidelined for the past several days. I am feeling [mostly] better now, but only because I relented, and started taking a cough suppressant. That's something I've tried to avoid ever since my diagnosis, but this time I figured, why not? I already conceded to taking a baby aspirin and a statin drug everyday, due to a heart issue I may or may not have, so taking a cold medication didn't seem much more a violation of that principle. I've always tried to abstain from taking any medication [and vitamins and supplements] since my diagnosis, believing when the time does come to start treatment, the medications that I do take will be that much more effective. Not sure that is true, but it seems logical to me. So while I'm not sure I do need treatment at this point, ...

Not even a weekend of eating and drinking wine in the Santa Rita Hills wine country, could alleviate all of the anguish I've experienced since the start of this month, but it did help. So to keep whatever momentum I've started going, I thought I'd switch focus to something else that has been bugging me for some time now. The concept of complementary treatment ! It appears the bad name alternative treatments have been receiving is finally taking its toll. Why else would advocates of alternative treatments be trying to steer clear of the term alternative . A term often met with skeptism by medical experts, in addition to carrying the much deserved stigma of being unproven, risky and dangerous at best. So now, in order to remove that stigma, the industry is taking a new approach. In order to create legitimacy, where only skepticism existed before, the industry is promoting the concept of complementary therapy, that is alternative treatment(s) combined with conventional treatm...

The mere mention of someone touting the benefits of vitamins and supplements, whether it be from some renowned[?] source , or another cancer survivor , usually sends me into a tirade. There is not much good that comes from taking vitamins and supplements. Their is no proof that any of them provide the benefit(s) claimed, they are easily abused, and there is no regulation guaranteeing you're even getting what the label says. But you don't have to just take my word for it anymore, simply because I've managed to fight my MCL for over 10 years, without any conventional cancer treatment, and by completely abstaining from taking any vitamins, supplements or herbal remedies. Now  Consumer Reports  is also warning of the 10 Surprising Dangers of Vitamins and Supplements .

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...

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 wit...

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 Velc...

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 ma...

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 r...

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 bette...

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 transplan...

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 les...

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. [note]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.[/note] 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 ...

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 tak...

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 i...