Month: January 2008

And I thought famvir made me sick

On Friday I started taking famvir for an outbreak of shingles.  I knew from previous times that famvir gave me a pretty bad headache, but I thought I’d do it anyway and maybe this time it wouldn’t happen.  I withstood it for almost 4 full days, but then called the doctor to get something else. It was a wicked headache and I thought anything else had to be better.  I got the rx for acyclovir Tuesday and took my first dose with dinner. Pretty soon I was experiencing nausea.  Those of you who know me, know that this is a serious situation. I fought off the nausea for four hours and then finally had an episode of vomiting and diarrhea.  It was over fast, and probably not worth the four hours I spent trying to avoid it. We do what we do though, and it’s hard to overcome a phobia you’ve had all your life. This could have very well been a coincidence, but I attributed it to the acyclovir (nausea, vomiting and diarrhea are reported possible side effects).  I called my doctor the next day, and a nurse asked me if I could tolerate the famvir headache for just 3 more days.  So, I’m back on famvir now.  Just a couple of days to go.  Afterwards, I will probably take one a day to help prevent a recurrence of shingles.

The eye doctor told me that he saw no internal goings-on in my eye.  Only the exterior was affected, including the eyelid (outside and inside).  I have an antibiotic ointment to apply twice daily and a return appointment next week.

I should expect to have a complete recovery anywhere from a few weeks to 6 weeks.

More about shingles

I just learned that shingles’ name comes from the Latin cingulum, which means girdle or belt. There’s a lot of useful information about shingles at the FDA web site.

Eye doctor

Shingles on the left side of my faceI’m seeing the doctor this afternoon about my left eye, which is afflicted with shingles. If an eye is ever affected by shingles, get to a doctor, asap!

Here’s a new picture of what the rash looks like.  Don’t click on the thumbnail if you don’t want to see it.  I think it’s hideous.  I try to stay in so that I don’t attract mobs of torch-wielding villagers out in front of the house.

I’m still taking the 500 mg  of Famvir three times a day and am taking some oxycodone as needed.  I never thought I’d say this, but I wish I had some dex.

More about shingles

Shingles, schmingles

I have a case of shingles AGAIN.  This time it’s on the left side of my head and face, affecting my eye.  I’m on 500 mg of Famvir, three times a day. As my doctor said, it will get worse before it gets better. These pictures don’t really quite do it justice.

More about shingles on this blog.

What is shingles? There’s a really good explanation of shingles here on Wikipedia.

Shingles on my face

More shingles

Shingles affect my eyelid

zoster, shingles, varicella

Message from a reader

I got this message from a blog reader, Earl.  I wanted to share it.

 

Here is my story concerning my reversal of a pre-cancerous prostate, called high grade PIN.
 
On January 3, 2002 I had a PSA level of 4.6 indicating my prostate was in trouble. I went to a Urologist, he took a biopsy, I had a pre-cancerous prostate ( which means I did not have cancer, however 70 % of high grade PIN patients go to full blown prostate cancer within a year). I had all the ingredients that were suppose to lead to prostate cancer ( abnormal cells galore). The doctor said "only" that we will have to watch it. I didn’t like the answer so I said I will do more than watch, I will fix it. I went on the on the Internet and researched the "alternative health solutions"  to fixing the problem. I did so and applied the information. I had a biopsy in mid August of 2007; the biopsy showed no traces what so ever of the pre- cancerous cells! The Urologists believed I had changed the structure of my bad pre-cancerous cells back to normal.
 
Here is what I did. First let me speak briefly about curcumin.It is the new "alternative health hope" for MM. My wife passed away from MM 10 years ago. I started taking it several months ago. Two things became apparent to me recently. My C reactive protein count ( CRP) is .2 as of a reading I obtained  last week ( after taking curcumin) and my Triglycerides were 71, over a (30) point drop from my last reading. Why is that important? Inflammation seems to be a big factor in cancer and therefore MM as well. I am not a doctor and cannot speak in technical terms nor provide scientific evidence of results occurring in my body. I can only speak  anecdotally. I took the CRP test to determine  my risk for heart attacks; I learned below 1 is low risk; between 1-3 is a moderate risk; between 3-10 is high risk. I was reading a blog about MM and a man was suggesting CRP is very relevant to cancer and MM. So my CRP reading was VERY GOOD to say the least. However there is more to my story and other factors that might have made my CRP go down as well.
 
Briefly, my program to get rid of my pre-cancerous prostate was/is the following: I lost 25 lbs and maintained the weight loss. I went to a diet of ALL organic foods, no read meat (chicken and fish instead), stopped drinking and smoking, walked every day, bought a vita mix and juiced up to 50 ounces plus every day, with few exceptions, of "vegetables only." I occasionally had fruit but in much lower amounts due to the sugar content. I ate two table spoonfuls of "ground flaxseed". I had a table spoonful of cod liver oiI, had 3 oz. of Noni juice, 1000 grams of vitamin C; Saw Pallmento, selenium, Zinc, 600 mg of NAC (N acycetal cysteine),  tomato soup daily, bought a purifier for my faucet,  WAS EXTREMELY DISCIPLINED and did not deviate. Why? I was scared I was going to die.
 
I used broccoli, kale, parsley,carrots,  and cabbage (red) mixed with water. My taking curcumin (mixed with heated olive oil) must be taken in context with the above information.
 
Anyone reading this might correctly conclude this guy is a bit over the edge; I can understand that conclusion. However, I made a choice to live and go through some sacrifices for awhile……..it worked. My life style change caused all kinds of other good things to happen to my body…….need less to say, I really feel good. It was a wake up call for me. I hope this information can help someone……I know the fear of cancer. What I learned through my experience gave "me control"……I could actually do something about my body to make it better. When the doctor said we should "watch the high grade PIN" ……..initially I felt hopeless. Then I took control; unfortunately or fortunately, you have to do "it" yourself………place it in your mind and do it.
 
I truly hope this information will help others. Always believe you can do it……..if you think you can , you can….if you think you can’t , you can’t.

Ancient history

My dad sent one of my high school yearbooks to me. He found it while he was cleaning out some things. I have always hated having my picture taken. This is from 32 years ago, so why not put it on my blog? This was taken without my knowledge, and I never knew who did it. I was running with a teacher’s dog in this photo. I had one of my dad’s army shirts on.  I loved that shirt and wore it until it was threadbare. Oh yeah — for the kids — this was back when the pictures in our yearbooks were all black & white and Gerald Ford was president.

Yearbook photo

IMF Says 90% overall response with new Relvlimd® combination (BiRD)

This is a press release  from the  International Myeloma Foundation.

I was on Revlimid with high dose dex for some time back in 2005, I think. I remember being miserable on the high doses of steroids and that my MM progressed after I cut back.  We figured the Revlimid didn’t work for me. But that doesn’t mean that it might not work if I added Biaxin.  It’s one more thing I can try when I have to start treatment again. The thought of having to take steroids again kind of causes a feeling of anxiety.

­–BiRD Study (Biaxin®-Revlimid-Dexamethasone) Provides Evidence of Deep Complete Response Rates In Newly Diagnosed Multiple Myeloma–

North Hollywood, CA, January 4, 2008 – The International Myeloma Foundation (IMF)—supporting research and providing education, advocacy and support for myeloma patients, families, researchers and physicians—today said updated data from the Phase II BiRD study provide a new option for newly diagnosed patients with multiple myeloma whether or not they proceed to stem cell transplant. The findings show a superb overall response rate of 90.3%. 38.9% of the patients achieved a complete response (using EBMT criteria) and 73.6% achieved a 90% or greater decrease in m-protein levels. Using the new International Myeloma Working Group Criteria—recently developed to better define the magnitude of a complete response by a panel of experts led by Brian G.M. Durie, M.D., chairman and co-founder of the IMF—30.6% of the patients achieved this new stringent complete response* (sCR). The findings have been published in the online version of the journal BLOOD.

The BiRD regimen is made up of REVLIMID® (lenalidomide) plus a low dose of the steroid dexamethasone, and adds Biaxin® (clarithromycin). The BiRD treatment did not impede stem cell transplantation, and demonstrated two-year event-free survival rate of 85.2% for patients who underwent stem cell transplant and 75.2% for those who continued on therapy without transplant. Median event-free survival time was not reached.

In addition to the response criteria, the findings from the BiRD study, like a previous study of REVLIMID with low-dose dexamethasone, show response deepening over time: the average time to partial response was just over six weeks, but average time to complete response was 22 weeks, and stringent complete response was reached at 38 weeks.
"This is an exciting time for the treatment of myeloma," said Susie Novis, president and co-founder of the IMF. "We now have multiple studies showing improved response and survival with various regimens including REVLIMID/dexamethasone in previously treated and newly diagnosed patients, DOXIL®/VELCADE® for previously-treated patients who want a steroid-free regimen, and thalidomide/melphalan/prednisone in older patients not eligible for transplant."

Myeloma, also called multiple myeloma, is a cancer of the bone marrow that affects production of red cells, white cells and stem cells. It affects an estimated 750,000 people worldwide, and in industrialized countries it is being diagnosed in growing numbers and in increasingly younger people.

The data were published in an article by lead author Ruben Niesvizky of the Multiple Myeloma Service, Division of Hematology and Medical Oncology, Weill-Cornell Medical College, New York Presbyterian Hospital-Cornell Medical Center.

* sCR requires complete absence of M-protein by immunofixation, normal free light chain ratio and a negative marrow biopsy by immunohistochemistry.

ABOUT THE INTERNATIONAL MYELOMA FOUNDATION
The International Myeloma Foundation is the oldest and largest myeloma organization, reaching more than 165,000 members in 113 countries worldwide. A 501 (c) 3 non-profit organization dedicated to improving the quality of life of myeloma patients and their families, the IMF focuses in four key areas: research, education, support and advocacy. To date, the IMF has conducted more than 120 educational seminars worldwide, maintains a world-renowned hotline, and operates Bank on a Cure®, a unique gene bank to advance myeloma research. The IMF was rated as the number one resource for patients in an independent survey by the Target Research Group. The IMF can be reached at (800) 452-CURE, or out of the United States at (818) 487-7455. More information is available at www.myeloma.org.

Media Contact: Stephen Gendel or Jennifer Anderson (212) 918-4650