Dr. R. Taylor Category

Monday, September 21st, 2009

Back on Xeloda Again

I’m back on Xeloda again
Back where I’m trying to mend
Where my body will be ripped
From the cancer that has gripped
Back on Xeloda again

Whoopi-ty-aye-oh
Rockin’ to and fro
Back on Xeloda again
Whoopi-ty-aye-yay
I get cancer out of my way
Back on Xeloda again

Ok, so I’m not a lyricist, no offense to Mr. Gene Autry.

After almost 4 weeks, I am back on Xeloda again…
Back on a very important medication in my battle…

4 weeks… almost a month… a month of lost time…

Lost time due to the attempted $1,500.00 “Medication Maintenance” fee from Burzynski Clinic.
Lost time due to to getting my PCP to write the drug refills for me, so that I can circumvent the “Medication Maintenance” fee.

Lost time…

Now…

I will again deal with more side effects, in addition to the side effects of the other drugs I’m taking (Tarceva, Zolinza, Zometa and Sodium Phenylbutyrate).

Again, adding Xeloda side effects…

The (most common) Xeloda side effects -

* Diarrhea, nausea, vomiting, mouth and throat sores, abdominal pain, upset stomach, constipation, loss of appetite, and dehydration
* pain, swelling or redness of hands or feet that prevents normal activity, dry, itchy or discolored skin, rash, nail problems, and hair loss
* Tiredness, weakness, dizziness, headache, fever, pain (such as chest, back, joint, and muscle), difficulty sleeping, and taste problems

Happy Happy Joy Joy.

In Addition, I need to get the situation with Roche PAP cleared up – regarding the letter I got from them stating that they felt I should have pursued another resource for financial assistance before I went to them.

The letter advising me to contact Texas Health and Human Resources requesting assistance.

The letter telling me that if I am not approved, then Roche will reconsider my situation.

I have 30 days to do this.  After 30 days, my drug assistance for Xeloda will end.

but for now…

I’m back on Xeloda again…

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Posted in Burzynski Clinic, Burzynski Clinic Financial Charges, Dealing with Gene Therapy Drug Reactions, Dr. R. Taylor, Gene Therapy Drugs | 2 Comments »

Wednesday, September 9th, 2009

Roller Coaster

I’m Up
……….I’m Down
I’m Up
……….I’m Down
I’m Up…

Finally got an appointment with my PCP this afternoon, had a heart-to-heart with him and…

He wrote the reorders for my PAP meds!  For my Tarceva, Zolinza, Zometa and Xeloda!

I can breath a little easier for a while cuz I don’t have to worry about coming up with the extra $1,500 “Medication Maintenance” for Burzynski Clinic to write the reorders, instead I can focus on other things I need to deal with.

I’m no longer bent over the barrel

I’m Up

I know there’ll be more to come
but for now
for now
for right now…

I can enjoy the coast.

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Posted in appreciation, Dr. R. Taylor, Gene Therapy Drugs, Gene Therapy Regime, happiness, hope | 5 Comments »

Tuesday, September 8th, 2009

Bending Over The Barrel

Since he helped before with my prescription of Zometa, I was presuming, assuming, hoping that my Primary Care Physician (PCP) would be amicable to handling the reorders (Rx refills) for the Tarceva, Zolinza, and Xeloda.  This would eliminate the need to come up with the extra $1,500.00 that Burzynski Clinic is demanding in order to write my prescription refills.  This would have taken a Huge stress off of me.

I had talked with the Drug Company PAP Reps and cleared with all to change the Doctor in charge of Rx reorders (refills) Dr from Burzynski to my PCP.  All was good to go.

Guess I shoulda cleared with my PCP first and not ASS-U-M’ed, cuz I get the message that he is not good to go.  He is not comfortable with writing Rx for cancer meds as he is an Internist and not an Oncologist.

So, I am back to dealing with the $1,500.00 “Medication Management” charge from Burzynski Clinic.

I am currently out of Xeloda, should have restarted today.  But I have no reorder, no refill.

Unless I pay Burzynski Clinic the $1,500.00

They have me over a barrel.

Bending me.

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Posted in anger, Burzynski Clinic Financial Charges, Dr. R. Taylor, frustration, Gene Therapy Drugs, Overload, scared, Stress, tired, venting | 2 Comments »

Friday, August 21st, 2009

Update on Bloodwork…

To update on my (missing) bloodwork. My PCP Dr‘s office has sent in the info the the lab, all that’s needed now is his authorization, which should be early next week since he is out of the office until next Tuesday.

They will call me and let me know, and then I’ll be off to get stuck and drained…

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Posted in Dr. R. Taylor, frustration, Tests | No Comments »

Wednesday, August 19th, 2009

Tumor Markers #4 – Where O Where…?

I am Sooooo freaking frustrated.

Every month I’m Supposed to get a Blood Draw to check my tumor markers.  While some Drs don’t put much meaning into the markers, others do… and my #3 results were good.  Any good news as far as I’m concerned, right?  And it’s been kind of exciting cuz the numbers have been going down.  Again – any good news…

So… each month, before my Zometa infusion, I’m supposed to get a draw for my CEA, CA-125, CA 15-3, CA 27.29 (see CA15-3) numbers (total of 7 tests).  Also, every 3rd month, I’m also supposed to get a draw for Serum HER-2, Plasma VEGF and Serum EGFR (total of 3 tests).

At my last infusion (#3) I had blood drawn for what I Thought was my monthly AND my 3 month (3 tests).

And I’ve been waiting the results.

Waiting.

Waiting.

Come to find out, there was some mix-up with what tests were supposed to be run and all that was run was the 3 for “3rd month” and not the monthlies.  Seems I didn’t make the schedule and tests clear to my Primary Care Physician (PCP) and I guess he thought the last set were a one-time run or something…?  I’m not sure, but ends up that only 4 tests were run when it was supposed to be 9.  Plus the “3rd month” tests” have to be sent off to Virginia (???) and don’t get back for 2 weeks.  I’m guessing that this will all cost me more than the $ I was told… just How much more, I don’t know, but I’m guessing more…

So now I have to get myself back to the hospital and get the blood work done “again”.

Gotta hope my Dragons are Still Protecting Me…

Gotta Hope.

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Posted in Dr. R. Taylor, frustration, Tests, tired, venting | 4 Comments »

Friday, July 3rd, 2009

The Honorable Profession of Nursing

I know there’s a lot of emotion on this blog, and I bitch about what I am going through, but one thing I want to be Perfectly Clear on – I am Grateful For Every “Break” Which I Am Afforded.  Truly.Truly.Grateful.

And, despite the cavalier and bourgeois attitude of some Doctors I have dealt with (but NOT my Most Awesome PCP – Dr. Ronald Taylor), one Major thing that I am Eternally Grateful for is the Empathy and Gracious Care that I have been given by the Nurses and Nursing Staff, of all levels, who have attended to me.

I have been Truly Blessed to be in the care of these “Unsung Heroes”.

These women and men have treated me with Respect, Dignity and Genuine Caring which has made this Difficult journey So Much Easier.  Without them, my path would be Much Harder.  Much.Much.Harder.

To All the Nurses who have not only done their jobs by attending to me, but who have opened their hearts to my situation, I send my Utmost Gratitude, Sincere Appreciation and Heartfelt THANKS!!

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Posted in appreciation, Dr. R. Taylor, Emotions, Gene Therapy Drugs, Generosity, Nurses | No Comments »

Tuesday, June 30th, 2009

Houston, We Have Infusion!

So I’ve got the final OK – I have found a location to receive my Much Needed and Long Overdue infusion of Zometa!  YAY!

Much Needed and Long Overdue by 2 weeks.  Two weeks that have past while I was struggling to find a solution to a problem that should NOT have existed.

The location will be North Cypress Medical Center – Ambulatory Infusion Therapy Center.  Let’s hope their infusion procedures are better than the PET/CT Scan procedures of the North Cypress Medical Center Imaging Center which – supposedly – are not quite as close to protocol as they should be…

I’ve talked with Novartis Oncology Patient Assistance Program, and they are good to ship my “new” prescription of Zometa directly to the NCMC Infusion Therapy Center Pharmacy, so the Burzynski Clinic will have no handling of the 3 small vials of Zometa, so there SHOULD be no need for any $1500/month charge for “Medicine Management”.

The total infusion charges will now be $310.78 per month (just a little bit higher than originally suggested, but still Much lower than the $1000 at the Burzynski Clinic)… this will include receiving the Zometa, compounding the Zometa for infusion, infusion procedure utilizing my port and storage of the vials.

I am scheduled for this upcoming Thursday – July 02.  If it hits me as hard as it did last time, I’m gonna have a helluva July 4th… And since Mom will be in Corpus with Dad, recovering from his surgery, I’ll be doing this one alone… ~sigh~

The “good news” though, is that the extreme symptoms I experienced with my first Zometa infusion were uncommon, and the more common “mild” flu-like symptoms usually occur with first treatment only.

Let’s Hope.

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Posted in Dr. R. Taylor, Gene Therapy Drugs, hope, Medical Procedures, North Cypress Medical Center, tired | 5 Comments »

Friday, June 26th, 2009

Off On A Hunt – Finding An Infusion Center

It was a Busy day today…

When I talked with Barbara T (the Financial Manager) at the Burzynski Clinic and told her that the charge of $1000 per infusion AND an Additional $1500/month to “handle” the (3 small vials of) Zometa was just more than I could afford, she told me “Well, we have to survive here”.

Excuse me?  How About Me Surviving Here?  If I can’t afford to stay at the Clinic, then I can’t pay for You to “survive” and if I’m dead, then I certainly am not paying for Your “survival”..

Then she looked me in the eye and Said “You are the one getting your medicine for free, right?”, like because I am getting financial assistance with my meds, that means I have the $2500/month extra to spend on other (unexpected) charges?

Nooooo… I’m getting the financial assistance because I don’t have health insurance and because I can’t afford the meds… I was Told $4500/month for my PB and my Case Management, I Signed a Paper Stating $4500/month, and That is what I have budgeted for.

If you can call applying for financial assistance, compiling info on organizing fundraisers and getting ready to sell on eBay “budgeting”… more on eBay (TeamDenise) later…

I guess they must have more patients than they can handle to not care if someone is unable to afford their services due to unexpected And Substantial increases in charges.

I want to live, I Believe in the Burzynsky treatment – I would NOT have stopped my chemo path and come to the Clinic if I did not believe.  I Want To Live.

I swear, I’m starting to feel like this unconditional faith is similar to the years of faith I put in Clifford and look how That bit me in the big behind!  Big.Time.

So… due to Those financial issues, I had to go by my (Totally Awesome) PCP’s (Primary Care Physician of the past 15yrs  – Dr. Ronald Taylor) office and get him to write a prescription for Zometa for Novartis Oncology (the company that has granted me financial assistance with my monthly infusion of Zometa – the drug for the bone cancer).

I had to confirm that North Cypress Medical Hospital’s Infusion Center would accept physical receipt of my Zometa and would be able to give me my infusion and what the charges would be for receipt, compounding the drug into IV, infusion and storage (3 months per shipment).  I was given a preliminary “ok” , but I have learned that “preliminary” is Not a confirmation, so I am not all excited… I was also given a cost range of $160 – $210, but – again – I have learned take numbers at face value where medical is concerned, so I will wait for a formal confirmation.

But it Seems like it will be doable…

We Shall See.

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Posted in anger, appreciation, Burzynski Clinic, Burzynski Clinic Financial Charges, Cancer, Dr. R. Taylor, Emotions, frustration, Gene Therapy Drugs, hope, venting | 2 Comments »







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