Saturday, March 12, 2005

10week (4 days post infusion)

feeling great ! today is not a gym day. That is being reserved for mon. and Thursday only.

Incidentally I was told this morning that my more professional appointments should begin Mar 24 and also be two separate sessions twice a week so Thursdays will need to change.

The following is pasted in from a mail sent this morning: please understand my laziness in not wanting to recount it again.



After meeting with Dr. Kinkel and hearing his opinion on Zenapax which is similar to Tysabri http://www.cbc.ca/story/science/national/2004/11/24/ms041122.html in its mode of action and his overwhelming success in treating many of his patients with it, I received my first infusion.

After discussing my success with chemo and the progress I'm making with my own physical rehab in the pool and gym, work with my osteopath, and nutritionist GP I kicked both legs out, moved my feet and ankles ect. He was impressed and praised me for my attitude and progress to date.

His neurological institute (http://www.kinkelneurologic.com/index.htm in Buffalo was extremely warm in their reception of me and made me feel very relaxed and helped me see my decision was a very wise one.

Without over stating the regimens efficacy, his staff optimistically told me that I would not be the first to arrive seating and eventually leave them on my own two feet.

It was this medication that I had first heard of (and asked my neurologists about last Dec '04) and which had started
me down this road.

My next infusion is in a few weeks and then will be followed monthly.

MS is thought to be caused by an over-reactive immune response. T-lymphocytes (cells of the immune system), are thought to damage myelin, a substance that covers the nerve and parts of the spinal cord and is damaged in patients with MS. Interleukin-2 is a natural substance in the body that is necessary for the growth of T-lymphocytes.

Zenapax is a genetically engineered antibody that blocks the activity of interleukin-2 and thus interferes with the growth of lymphocytes. Therefore, Zenapax may prevent some of the damage to myelin that occurs in multiple sclerosis
My neurologists reaction to my situation and not being an advocate.

Knowledgeable definitely. She however uses phrases such as can't, won't too frequently to make me believe she really wants to help.


"I cannot sign that letter in its current form. It is not my opinion
that he will benefit from Tysabri at this time, based on clinical
evidence i.e. it has not been studied in secondary progressive MS.

I will sign a letter only that:

1. states clearly that his MS is in a well-established secondary
progressive phase,

and 2. aknowledges my awareness that Tysabri is currently only
indicated for Relapsing-remitting MS, and that as such he is not a
candidate outside of a clinical trial.

I cannot in good faith professionally ask for a consultation that I do
not endorse or believe in.

However, if there is a clinical trial enrolling secondary progressive
patients for treatment with Tysabri, I would be happy to refer him to
that centre. According to the MS clinical trials website, there is one
either starting or underway for this indication, but I have not been
able to find the centre. I would request Dr. O'Connor's opinion on this
-

I will forward my concerns to Dr. O'Connor.

Thanks,"

dear Ken ...

Dear KEN or whomever will assist me,

RE: Zenapax


As I told Sheryl at the MS Clinic, thank you so much for helping me understand the Canadian medical system as it pertains to obtaining a off-label prescription for similar break through treatments, and also what the criteria is for Trillium approved funding for Antagren.

I don't want to appear unreasonable or too pushy with the specialists but I do want the opportunity to present my case and perhaps even an appointment to see Dr. Paul O'Connor or comparable neurologist in person. I really need an advocate to believe it is worth a try. I understand Dr. Lesley Lee of Sunnybrook's MS Clinic may also be permitted to write the off-label Rx. Thank you for assisting me in seeing him. I really believe it's a faster and more feasible route given Dr Ursel's stance.

Fact: After years of deterioration with MS and trying every known treatment, up to Chemotherapy, my situation continued to worsen. For the first time in 10 years I am suddenly seeing health and strength improvements every day.

The first miracle for me was discovering how much of my condition appears to be related to some very severe and chronic food allergies.
After less than 6 months on a very restricted diet and rigorously going to the pool and gym to work out I am seeing improvements that I never imagined possible. I can kick my legs, feet and tread water as never before.
The shaking of my hands and arms has significantly diminished. My complexion and skin color have dramatically improved. All of my family, friends and the health practitioners including my nurse who I come into contact with are amazed by the changes in my condition. This is no exaggeration.


Fact: Zenapax (like Antegren. is the best and most promising medical treatment that as been available to MS patients. The clinical are all very encouraging and the anecdotes are also very positive. I have met a woman who was in a wheel chair for 13 years, who is now walking and playing golf. She was able to get on the medication early in the US clinical trials. This is a miracle. She also had SP MS

I am not suggesting that I am expecting a miracle or to play golf. What
I am hoping for is to somehow find a way to get on Zenapax in the hopes of some improvement and a slightly better quality of life.

I am 100% committed to this; how can I get the support of the Canadian MS
Professionals?

1. Obviously, I would hope to get approved for the drug in Canada
–––and also get funded by the Trillium program.
2. If funding is out of the question I will find a way to pay for
the drug with the help of my family and friends.
3. If I can’t get the prescription in Canada then I will attempt
to look to the US for treatment (which will be more expensive and very cumbersome)

Over the last few years, I really have not had many glimmers of optimism about my condition, prognosis, or quality of life. For the first time I am now seeing such remarkable improvements with just the discovery of my food allergies and a new diet regimen.

I want to try Zenapax. I am committed to finding a neurologist who will become my advocate and prescribe the medication to me. I now have some optimism for my outlook.

I appreciate your help and advocacy.

Thanks, Steven.

I’m attaching third- party endorsement of my progress outlined in a letter from the City of Toronto Rec. Center.

indicators on my progress...

I'm seeing 'real' and tangible improvements in my health.
I have so much to tell you and look forward to showing you the changes and sharing my continuous improvements and progress in the pool. Monday's was an ability to actually kick my legs and see my ankles while ding the back crawl and making the water behind me 'splash'.

BUT, the real neurological news is at http://www.cbc.ca/story/science/national/2004/11/24/ms041122.html

I looked more into the drug, found it may be obtained up here already under a different indicated use. My neurologist at the MS Clinic outright refused to prescribe it.

Thus, the first apt. with another neurologist here in TO feb 10/ 05 referred to me by my nutritionist GP who is amazed by my improvement thus far.

Failing his decision to join me in my fight and work with me, write the Rx and not be convinced by one the medical industries most highly respected journal the New England Journal of Medicine (abstract at:)


http://content.nejm.org/cgi/content/abstract/348/1/15?andorexacttitleabs=and&search_tab=articles&tocsectionid=Original+Articles&tocsectionid=Special+Reports&tocsectionid=Special+Articles&tocsectionid=Clinical+Practice&tocsectionid=Review+ArticlesAORBClinical+PracticeAORBClinical+Implications+of+Basic+ResearchAORBMolecular+Medicine&tocsectionid=EditorialsAORBPerspectiveAORBOutlookAORBBehind+the+Research&tocsectionid=Clinical+Implications+of+Basic+Research&tmonth=Dec&searchtitle=Articles&excludeflag=TWEEK_element&sortspec=PUBDATE_SORTDATE+desc+Score+desc&hits=20&where=titleabstract&tyear=2004&andorexactfulltext=and&fyear=2002&fmonth=Dec&sendit=GO&searchterm=multiple+sclerosis&searchid=1104630637942_3101&FIRSTINDEX=0&tocsectionid=Original+Articles&tocsectionid=Special+Reports&tocsectionid=Special+Articles&tocsectionid=Clinical+Practice&tocsectionid=Review+ArticlesAORBClinical+PracticeAORBClinical+Implications+of+Basic+ResearchAORBMolecular+Medicine&tocsectionid=EditorialsAORBPerspectiveAORBOutlookAORBBehind+the+Research&tocsectionid=Clinical+Implications+of+Basic+Research&journalcode=nejm

my back-up appointment is scheduled for Feb 2 in Buffalo, NY and begin treatments via infusion soon after.

A 50 + yr. old FRIEND of my MOM'S with the same kind of MS and also
strictly adhering to diet and vitamin supplementation got up out of
her chair of 12 years after only 3 months on the medication. She's
been on it 3 years and complains only of her score on THE golf
course.

I'm keeping a realistic expectation that may not work the same for
me

But, what am if not a classic taurus and stubbornly persistent.

Either way, I FEEL proud that I'll be giving it a go!

jan 12 '05 horoscope grabs me ...

Monday, January 10, 2005
Yesterday | TODAY | Tomorrow

Steve carubba,
There is something reassuring about what is happening in your life now, even if there isn't much forward movement. You know that changes are occurring, but they seem to be hidden from sight. Trust your inner voice that knows that these transformations will bring results if you are consistent and patient. Rest assured that you are both.
Click here to get your Personal Astrology Forecast
to see what lies ahead for you!
View another sign:
Aries | Taurus | Gemini | Cancer | Leo | Virgo | Libra
Scorpio | Sagittarius | Capricorn | Aquarius | Pisces




General Daily Overview
The New Moon is at 7:02 am EST, in practical Capricorn. Feelings may become stiff as we pull our energy in, trying to start the week with more structure. As if this isn't enough, both Mercury and Venus have just entered cautious Capricorn, too. This New Moon symbolizes a new beginning in our emotional cycles. It, along with Mercury and Venus, emphasizes Capricorn's need for fundamental integrity and reminds us to take things seriously. We may feel an emotional shift as the Moon enters social Aquarius, even if it's not until 10:07 pm EST.

mar 02 - my horoscope 1 week prior to infusion...

Wednesday, March 02, 2005
Yesterday | TODAY | Tomorrow

Steve carubba,

You are starting to pick up on an incoming wave of enthusiasm that will continue to grow over the next few days. It's important, however, that you conserve energy now or you will exhaust yourself before the real action begins. No matter how big it feels today, there's more that's yet to come. Be patient and do what you must in order to be ready.
Click here to get your Personal Astrology Forecast
to see what lies ahead for you!

General Daily Overview
Our beliefs can propel us into righteous action when the Moon enters adventurous Sagittarius at 1:28 pm EST. This shift can be noticeable as our spirits lift us out of the Scorpionic depths where they have been suspended for the past few days. One of the biggest traps of the Sagittarian Moon is that optimism encourages us to avoid facing reality. The good news is that we are not afraid to make big plans. The bad news is that we can gloss over important details. Of course, finding a middle path and a balanced approach is what works best.