Desperate Measures

 Treatments  1 Response »
Apr 232006
 

It’s hard for me to be critical of the measures that some will take in seeking a cure for their disease, since I have my own alternative medicine regimens and beliefs, but sometimes a post comes across my computer that just seems so over the top, I have to say something.

Recently a member of the mantle cell lymphoma (MCL) e-mail group I subscribe to, posted the following to the group about an alternative treatment plan he is undertaking.

I considered posting a response on this subject to the MCL group, but decided against it. Since my diagnosis, I have believed it was all the vitamins, supplements and other unnatural-natural things that my wife and I took for a long time, which caused, or at least contributed to our illnesses. So rather than post to the e-mail group, where emotions can run high sometimes, I decided to post only here. While my intent is not always to spark controversy, it is always meant to promote thought.

Presently my NMD [Doctor of Naturopathic Medicine] has me on a wide range of herbal drugs [all in pill form]: Recanostat (a liver cleanser), Red Clover (an immune builder), Seacure (dried white ocean fish in a capsule for weight gain), Gastinc (weight gain), Adrenal (swelling of throat) and Compound X out of Reno, NV. (immune builder) – [ap]parentally an old Indian formula of various type herbs & roots. Compound X is the main treatment now and is a nasty tasting paste that you put in gel cap just before taking. It will make you nauseated, and I have to eat some fruit shortly afterwards to keep it down. ….

Maybe what they say is true, “what doesn’t kill you only makes you stronger”. He goes on

Also she [the NMD] does a blood/ozone/oxygen treatment every two weeks where she draws out 250cc [of] blood, run[s] it through a light machine, add[s] oxygen and then puts it back in. This is suppose[d] to clear the blood of impurities. The blood has changed color from a near purple/black condition to a red condition – so it must be working. Also during this same treatment I will either have a hydrogen peroxide treatment (150 cc) – for breathing, and there is another intravenous treatment of 250 cc for the immune system..

The first part almost sounds like blood letting to me, and then intravenous injections of hydrogen peroxide, well if that doesn’t sound like quackery, I don’t know what would.

She [the NMD] is going to start me on intravenous vit[amin] [C] treatment this coming Tuesday. …..[S]he is concerned about the fatigue and is having some blood test[s] run. She also wants me to start shots directly into the lymph nodes in the right groin area. It is a drug made in Germany and I can get it through a Canad[ian] dist[ributer]. The shots are twenty-one days in a row with two days off and then start all over. I would have to do a min. of three series. This is suppose to drain your lymph system. My NMD believes in building a strong immune system and it then will fight the cancer. …

In my opinion, you either have to have tremendous faith in your doctor, or be extremely desperate to follow such a course of treatment. I doubt that I would ever have enough faith in any doctor to go to such extremes, and if I were that desperate, I’m not sure it would be worth it anywaze.

But the Naturopath did have one piece of redeeming advice, and that was concerning diet.

My part is following her diet. No sugar or products made from refined sugar, no sodas, no milk products whatsoever, no corn or corn products, and no pork products. This is a killer for me as I love my cheeses, Mexican food and sodas. Suppose to eat lots of green fresh leafy vegetables, fish, chicken and red meat, also beans, potatoes and eggs. Can only cook in olive oil. Also wants me eating a lot of fresh fruit, especially red fruit, lots of nuts – walnuts, unsalted peanuts, almonds and natural peanut butter or almond butter.

That is where I am happy to say I am in complete agreement with the Naturopath. A healthy diet lacking in refined sugars is the best way to fight off cancers. Not sure what is so bad about corn, or if there is any benefit in natural peanut or almond butter, but then I’m not a doctor or nutritionist. I just have strong opinions.

There was one last point that was made in the post which I do take particular exception to.

… My problem is I may have to find me a new onc[ologist] that is up to date and proactive. When I see my present onc[ologist] he will ask me if I am ready for chemo and then I ask him if there are any changes out. His answer is nope no changes, therefore my answer is always nope. Doing a lot of research on my own, I find there is a lot of changes, so don’t know where he is coming from. He calls alternative medicine voodoo. So you see what I am up against.

There I have to agree, with the oncologist that is. I think VooDoo medicine might just be a good term for what is being prescribed here. (NOTE: I’m not trying to disparage VooDoo here. While there are many who truly believe VooDoo is real, I do have my doubts, but I think it best if I cover my bases.) :)

The other accurate statement is, there have not been any significant advances in the past 30 years in the treatment of cancers, blood or otherwise. With the exception of the addition of some monoclonal antibodies, which have shown some encouraging results, the standard cancer treatment is the same as it was 30 years ago, that is to infuse deadly chemicals into the body in an attempt to destroy the cancer cells. Nothing has really changed, except maybe for the chemicals.

While there is current research into vaccines, it is still in its infancy, and there are no studies yet, indicating the efficacy of such vaccines. Advances have also been made in the area of stem cell transplants, but some might consider those extreme measures as well, considering the risks.

IMO, we would be a lot further along in changing the current state of medicine for treating cancer and all kinds of disease, if so many people in the US weren’t hung up on the use of embryonic stem cells for medical research. Their steadfast position against the use of embryonic stem cells for the advancement of medical science, while at the same time permitting the wanton destruction of these same stem cells, without considering the potential benefit to society in curing many diseases, is beyond my comprehension.

Umh! I wonder if that comment will spark any controversy? :)

Results of the BMB are in

 Edie  1 Response »
Apr 192006
 

And it is pretty much jibberish to me. I spent a lot of time analyzing the report, and about the only thing, of any significance I discovered, was the plasma cells are approximately 10% to 15% of the bone marrow. That doesn’t bode well for a lesser diagnosis of MGUS (monoclonal gammopathy of unknown significance), but it is still a small enough amount, it can lead to a less severe diagnosis of indolent or smoldering MM.

Then there is the urine protein analysis, which couldn’t be evaluated due to the limitation of the agarose gel elecropheoresis procedure. And for those that are interested, agarose gel, as explained by Susan J. Leclair, Ph.D., CLS(NCA), Chancellor Professor, Department of Medical Laboratory Science, University of Massachusetts, Dartmouth

…. is something a lot like jello. It gives really good separation of the proteins but it doesn’t photography well at all. So they saw stuff; they just can’t keep a permanent copy of it.

I think they need to do a different test, but we will have to discuss that with the oncologist. A second opinion also seems warranted at this point, so I am going to attempt to get in contact with Dr. James R. Berenson a highly noted expert in Multiple Myeloma. Need to come up with a doctor in France or Italy (we haven’t been there yet), so we can get a tax deductible vacation out of this. Anybody have any suggestions?

One good bit of news is the radiation oncologist reduced the number of planned radiation treatments from 22 to 18. Not exactly why he feels he should do that, since there haven’t been any additional tests to determine any effect of the radiation, but any reduction, IMO, is a good thing.

In the mean time, Edie has an appointment with the orthopedic oncologist today to see how soon something can be accomplished to correct the compressive fracture of the T2 vertebrae, which is the culprit in all this.

 Posted by at 6:14 am

From Plasmacytoma to Multiple Myeloma

 Edie  No Responses »
Apr 152006
 

I never had such a sinking feeling in my gut, as I was driving my wife to Kaiser Sunset for her latest radiation treatment yesterday, and she told me her BMB was not negative. I’d been thinking this was going along so well, 5 treatments down and 17 more to go, before she was back to normal.

Now that has all changed. It was the radiation oncologist who called with the BMB report, and indicated that he would be increasing the dose of radiation but for less time (not sure the reasoning behind that), and when her oncologist gets back on Monday from vacation, they would discuss what other additional steps would/should be taken.

When I started this blog, it was meant to be an upbeat account of my trials and tribulations dealing with a diagnosis of Mantle Cell Lymphoma. Now it seems to be turning into anything but that.

Everything is moving so fast there just doesn’t seem to be enough time to absorb all the information available. Everything I have learned and espoused in some of my earlier posts, is going right out the window because time is of the essence. I don’t like giving full trust to the doctors without confirming what they are saying, but I am completely frustrated in deciding how to proceed.

Thirty plus years as a metallurgical engineer, has given me the analytical skills to look at a problem and decide how to proceed, but I’ve always had time to research and review before making any decisions. Even my lymphoma afforded me sufficient time to analyze and decide on a plan. But this is different, I don’t feel as though we have the time, and for the first time in my life, I am simply overwhelmed.

 Posted by at 5:03 am

Being sick is easy.

 Edie, Life, Off Topic  3 Responses »
Apr 142006
 

It’s being the care giver that’s the really tough job. And I should know, being both.

When I was first diagnosed with NHL, I know my illness played on the sympathies of many people, none of it intentional on my part. Initially I didn’t tell many people about my illness, because I didn’t want their perception of me to change. Sure I had to tell my boss and some of my co-workers, because I needed a lot of time off work, but to make my illness widely known, I thought would be a bad thing.

But as time went on, and others whom I did not inform some how found out, I didn’t notice any of the overt changes in attitude I had expected. And any changes that did occur, worked to my advantage, for which I was a willing participant. Now don’t tell anyone this, but as time went on, I even learned how to orchestrate sympathy to garner some benefit. After all, I’m sick, and while I really don’t need sympathy, if I can garner some benefit from it, why not? It was easy! It still is! :)

But now that my wife is sick, I see things in a whole new light. It not “all about me” any more, and what is so hard, is essentially being helpless to do anything, yet feeliing the need to do something. It’s ironic also in that here I am, diagnosed with NHL over 4 years ago, feeling fine, and not requiring any treatment, while my wife gets diagnosed with plasmacytoma two weeks ago, has some back pain and requires immediate treatment. So I do whatever I can, but it’s hard. Certainly a lot harder than being sick.

So what have I learned through all this? I’ve learned just how important it is to have a good support group of friends and colleagues around you. In general most people will be sympathetic, but it’s that strong support group that will make life a lot easier.

I’ve also learned that there is a lot more credence to an earlier post of mine, and the philosophy to live everyday like it was your last.

 Posted by at 11:03 am

A Patient’s Journey

 Off Topic  No Responses »
Apr 122006
 

I have been asked to contribute some of my “unique” insight as a patient, navigating the US health care system at the Medical Blog Network. I even have my own column titled A Patients Journey.

It’s my intent to post some of the many lessons I’ve learned, since being diagnosed with MCL, on the US health care system, health insurance, doctors, and patient advocacy. I might even throw in some random thoughts on two of my favorite passions, golf and cycling (Lance Armstrong style), plus adding some insights on learning how to enjoy life.

I know that is pretty much what I am doing here (and that won’t stop), but I also hope to use the larger audience to add some political spin to my ramblings, which I don’t think would be appropriate here. I will of course cross post anything I feel appropriate to both blogs.

 Posted by at 4:11 am

A Visit to the Radiation Oncologist

 Edie  No Responses »
Apr 082006
 

Well that was a fun experience, NOT!

Starting with the trip to Kaiser Sunset which is on Sunset Blvd in LA. That’s about 30 miles into heavy traffic. If you’re from LA, you know how tough that drive can be, and if you’re not from LA, just be happy you don’t have to find out. Fortunately Kaiser runs a shuttle from various satellite locations to the Kaiser Sunset facility, so at least my wife (Edie) won’t have to do that commute herself.

As it turns out, she is scheduled for daily treatments, Monday thru Friday, for the next 5 weeks. This came as quite a shock, as Edie was expecting 2 to 3 treatments. I’m not sure what I expected, but it sure wasn’t anywhere close to 25 treatments.

As expected, the facility was a very nice and clean facility, and the doctor was very nice and very young also. He tried to paint a not so dire picture of the treatment, but I knew better. And rather than bore you all with the particulars, I’ll just tell you that there are side effects (mostly fatigue), and long term effects, i.e. susceptability to secondary cancers some time in the future. There were also some hazards, which he mentioned, but I prefer not to think about them.

In the mean time, Edie goes for a mapping and graphing (I think that is what they called it) on Monday, but we’re still waiting for the results of the skeletel exam, the BMB and the urinalysis to ensure that the disease is not showing up anywhere else, before proceeding with the treatment.

Fortunately everybody where I work and where Edie works have been very supportive. I can’t imagine how it would be for us, or for others if they were not so supportive.

 Posted by at 10:58 am
 Older Entries