Tuesday, August 26, 2008

Hydroxyurea vs Nicosan

Jay sent me a question that I think some other people might have. So we are going to do a comparative analysis on the two medications

My doctor recently put me on Hydroxyurea. I was hesitant taking it because of the long term side effect of leukemia, but in the end I took it. I've been on it since May, and since May I still was getting sick and in the hospital. Then my doctor increased my dosage. My boss is from Nigeria and told me about Nicosan, Ive never heard of it before, so I started to read about it and that's how I found you. What do you think about Nicosan and Hydroxyurea?

First of all Jay, let me correct your misconception. Hydroxyurea (or Hydrea) was used primarily for the treatment of myeloproliferative (cellular abnormality) diseases like leukemia. The problem is that this treatment might trigger another rapid cell growth (which is a cancer pre-cursor).

Personally I would never take Hydroxyurea, although several people have told me that it works for them. Nicosan is my drug of choice and it's been treating me very, very well. I'm going to break the pros and cons of both of them down just so you get a better picture.

  1. Adjunct chemotherapy drug (don't know about you, but I'm anti-cancer anything!)
  2. Method of action: increases production of fetal hemoglobin cells by increasing nitric oxide levels (so pretty much, you can just take a soluble form of nitric oxide and cut out the hydrea altogether. Look up L-Arginine)
  3. Very toxic to the liver and kidneys. Causes bone marrow suppression
  4. Needs regular blood monitoring to check your platelet, BUN, liver enzymes and CBC levels
  5. Long term use hasn't been fully studied..who knows what will happen for those that have been on it for 10 years?
  6. It is shown to reduce your rate of crises by 30% after you've been on it for 6-12 months.
  7. Causes fertility problems in men and crosses the placental barrier in women, so you MUST not get pregnant or nurse while on it or you will have a jacked up baby
  8. The side effects are atrocious and range from hair loss, loss of appetite, drowsiness, nausea, vomiting, diarrhea, constipation, stomatitis, mucositis, anorexia....the list is practically endless. I've never talked to anyone that hasn't exhibited at least one side effect.
  9. Has FDA approval although the pharmaceutical company keeps announcing that "the benefits outweigh the risks". (*rolleyes*)
  10. #9 means that your insurance will pay for it and all you have is the $5-20 copay. If you don't have insurance, it ranges from $80-$200 depending on your dosage.
  1. Natural and herbal. A combination of 3 herbs: Piper guineenses seeds, Pterocapus osum stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves.
  2. Method of action: initiates an anti-sickling effect. The cells you do have won't assume their sickle shape. This means no crises---yay!
  3. Naturally processed through the body. Doesn't damage your organs in any way.
  4. No extra blood monitoring needed besides your usual H&H levels
  5. Long term use hasn't been studied---but all these herbs have been used in African countries for thousands of years.
  6. Reduces the rate of crises by 80% after you've been on it for 30-90 days.
  7. Only side effect is flushing (blushing) due to increased blood circulation. Most people (like me) don't even exhibit this.
  8. Has orphan drug status in the US although it's fully approved in Nigeria. The only thing holding up FDA approval is the big pharmaceutical companies that want a cut of the pie. Since they don't own the patent, they can't charge you outrageously for it. The company that makes Hydroxyurea would loss their advantage in the field. They would rather us all suffer while they block the drug from being approved and keep lining their pockets.
  9. #6 means you will have to buy it out of pocket and order it from Nigeria until the FDA lets it be sold in the US under the phytochemical name of Hemoxin.
  10. If you are paying out of pocket and shipping from abroad, it's pricier than Hydrea but this stuff actually works! 1 bottle of 30 pills costs around $60.00 and this includes shipping.
So....which do you think I picked? I'm on Nicosan, and it works for me.

For more information, read the tabs of the two drugs in the sidebar under File Cabinet. Good luck with your decision. Stay strong, stay positive and stay blessed!

Wednesday, August 20, 2008

I'm Alive

Okay, so I didn't plunge 14,000 feet to my death! It was soooooo fun that I'm ready to do it again. Norio was being so 'cautious' and he doesn't believe in risking your life for no reason...he didn't even go up! Personally it's one of the most exhilarating things I've ever done. Live outside the box darlings!

Right now, it's wet and soggy outside...I must say, I absolutely HATE Portland weather...it's summer for crying out loud! I really want to go lay on the beach in Mexico somewhere for a whole year just to get my sun on and payback for this lousy cloudy, rainy year.

My arm and leg are hurting today, nothing major, just L2s...I think it's because of the coldness seeping into my bones. Grrrr. Pain, pain, go away! I'm on vacation dammit!

Have a great week everyone!

Saturday, August 16, 2008

Excite Me...

I'm writing this from work, and in approximately 5 hours, my vacation starts! It's only 10 days long and so far the only thing I have penciled in is skydiving. Yep, you read right---SKYDIVING!
You're probably wondering why a sickle cell warrior as myself would want to skydive??? As my friend Rhea would say, "Why not?"

I've always wanted to skydive, ever since I was a kid. I saw my first skydiver when I was 8 and I've been a junkie ever since. Heights don't scare me, falling doesn't petrify me and dying doesn't give me shivers. Come on---after living and dying several times with sickle cell, nothing can be as scary as that. Trust. I think I'm a prime example of the type of person that should skydive. I want to do it because I can. Because out of a life of mediocrity, I crave something exciting. I'm always doing the 'right' thing and this experience is going to be Vixen doing bad all by herself.

None of my friends presently are up for it. And Norio---he's definitely against it, actually using words like 'forbid'. Ha! As if. I think I will just go by myself this week and be back in a flash with the pix and video to prove it.

So skydiving this week. Who wants to come?

Friday, August 8, 2008

Vacation Plans

Hello darlings,

Do you like my spiffy new signature? I saw it and totally fell in love with it. Bonjour from the beautiful city of Toronto...I had such a blast and I can't wait to go back. The trip was lovely---no sickness whatsoever, the people are great and it's truly a city of multiculturism. I almost want to move there!

School has been a bust, my new teacher is a PIA, but I'm hanging in there tryng to keep my 4.0. I'm just 2 classes in and I'm feeling overwhelmed already. I think it's more time management than anything, I spent 6 hours reading the new Acheron book versus working on my paper. What can I say...work hard, play harder!

No news on the Nicosan front. I've been taking it as religiously as I can being that I'm not a pill person and so far it's been treating me really well. I barely have pain anymore...probably 10% versus the 85% of the time that it used to be. If anyone is interested in ordering this, please email me and I'll send you the info.

I'm looking at my work schedule and it looks like I have 10 days coming up with nothing to do. I want to do something really cool and exciting, but airfare is a beeyotch right now, darn energy crises. Flying to Toronto was 600 bucks even though I bought the ticket hecka early.

Anyway, here are my options for my August trip.

1. Stay in Portland, drive up to Seattle for a few days to see my cousin.
2. Fly to Alabama to see my best friend who just got her heart broken.
3. Fly to NJ to annoy the heck out of my sister the Diva.
4. Go on one of those last minute trips to an exotic locale like Barbados, Mexico or St. Barts to get more stamps on my passport.

Leave your thoughts after the jump.
Hugs and I hope you are doing well.