Time to update on my reactions to the meds, overall…
I have a Spray of tiny rashy bumps across my upper chest, and behind and under my ears…
Dry dry skin…
The tips of my fingers are drying out and splitting…
I am getting pimples on my chin…
Diarrhea still…
My big toenails are separating from the nailbed…
My lower back aches most of the time…
And Tired, so very very tired…
So Lovely, and the epitome of beauty and grace.
Geez.This.Sucks.
Tags: Sodium Phenylbutrate, Tarceva, Xeloda, Zolinza, Zometa
Posted in Dealing with Gene Therapy Drug Reactions, Emotions, frustration, Gene Therapy Drug Reactions, Gene Therapy Drugs, Mom, sadness, scared, tired | 3 Comments »
The good news is that the reaction was Nothing like last time…
The bad new is… well, bad news is that I still have cancer…
Seriously, my fever fluctuated from 98.8 to at 99.1, and the aches are there – but they are minimal, and very tolerable compared to last time. Muscle aches, exhaustion and thats “about it”. I have spend most of the day on the couch and minimal puttering around the house. Had a 4th of July party to go to, but didn’t feel like getting out.
Mom, of course, called several times, Carol B called to check on me, and my neighbor, Julie touched base a few times.
Not much else to do… as Mr. Sack used to say – It Is What It Is.
And cancer is what it is.
Happy July 4th…
Tags: Cliff Grimes, Clifford F Grimes, Clifford Grimes, Dallas, Infusion, Mr. Sack, Zometa
Posted in Dealing with Gene Therapy Drug Reactions, Gene Therapy Drug Reactions | 1 Comment »
Yes, got my infusion today, at about 11:15am.
And I’ve been at home, waiting for the reaction, any reaction. It’s 6:05pm
Last time I was down for 3 days. It – Supposedly – will not be “as bad” this time.
All I’ve felt so far is tired, but last time it was 13hrs before it hit. Hit.Hard.
I’m hunkered down with soup and tylenol and lots of water…
Tags: Zometa
Posted in Dealing with Gene Therapy Drug Reactions, Gene Therapy Drug Reactions, Medical Procedures, tired | No Comments »
Today I got my Zometa Infusion! YAY! It was done at North Cypress Medical Center Ambulatory Infusion Therapy Center.
And I Have to say, it was Such a Professional and Uplifting experience!
I was treated with Such Kindness, even though I have no insurance, the staff was Very Generous and Attentive! With my financial situation, I secretly feel like a “beggar” of sorts, but that feeling was minimal today, and was in No Way caused by the Staff of the Infusion center… they were Friendly, Kind and I felt they were Truly Concerned and Cared about me and what I am going through. They took time to sit and talk with me, and To Listen.
The Ladies who took care of me were Patti, Teila, Becky and Sharon. Theye were Awesome! Of course, I’m still dealing with “emotional residue” from the chemo treatments, so whenever a needle comes close to my port, I kinda “fall apart”… not too bad, but I do cry and get emotional. But these Ladies were kind and took it all in stride.
It’s a Tough situation being in, having no insurance, having to ask for assistance… and medical expenses are Very high. But Today I Got A Break.
The TOTAL of my charges – receiving the Zometa, compounding the Zometa for infusion, infusion procedure utilizing my port AND the necessary bloodwork to access my levels and tumor markers was $315.00.
O.M.G. $315.00!! I Can Actually “Afford” That!!!
Which means that I Can Afford To Continue Treatment!!!
Which Means I Can Afford the Fight To Live!!!!
And they even provided a nice lunch!!
THANK YOU North Cypress Medical Center Ambulatory Infusion Therapy Center!!
I can take a breath and relax… until the next hit.
Posted in appreciation, Emotions, Medical Procedures, North Cypress Medical Center - Infusion Therapy Center, Nurses | 5 Comments »
So… every day is an adventure.
Novartis wasn’t able to ship my Rx of Zometa out until today (Wednesday) for a Friday delivery. So my Thursday appointment had to be rescheduled, because the meds won’t be there. And I was Very concerned since we aren’t working Friday, that the Infusion Center would also be closed, and the delivery – which is Supposed to be refrigerated – would be stuck for 3 days in the heat… But… Thank Goodness, They Are Open and – Pending Delivery – they have rescheduled me for a Friday infusion.
Of course, they are not sure what time UPS will delilver, and I’m still waiting to get tracking information, so I am kinda on “stand-by” for Friday. And since I don’t have a cell phone, I can’t be out running errands that I could be doing, I’ll have to stay at home, close to the phone.
But At Least I’ll Be Getting My Infusion!
I’m Hoping it will help with all the bone pain I have been experiencing for the past couple of weeks…
Tags: Infusion, Novartis, Zometa
Posted in Emotions, frustration, Medical Procedures, North Cypress Medical Center - Infusion Therapy Center, scared, tired | 4 Comments »
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.
Posted in Dr. R. Taylor, Gene Therapy Drugs, hope, Medical Procedures, North Cypress Medical Center, tired | 5 Comments »
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.
Tags: Cliff Grimes, Clifford F Grimes, Clifford Grimes, Mr. Sack, Zometa
Posted in anger, appreciation, Burzynski Clinic, Burzynski Clinic Financial Charges, Cancer, Dr. R. Taylor, Emotions, frustration, Gene Therapy Drugs, hope, venting | 2 Comments »
Today I was notified that my appeal was approved and I will be receiving assistance with my Zometa prescription from Novartis – that’s a $1087/month break! This grant is good for one year, and able to be renewed if needed!
YAY!!!
It’s been a Flipping Roller Coaster Ride! But now I can breathe a little easier knowing that ALL my meds are covered.
THANK YOU, NOVARTIS!
Posted in Burzynski Clinic, Financial Assistance, happiness, hope | 3 Comments »
The stresses of trying to acquire Financial Assistance are taking their tolls on me. I’m not sleeping well – laying awake as images of withheld prescriptions run though my mind. If I get 2 hours of sleep a night, I’m lucky. I’m running on empty and am afraid I’m not going to be able to keep it up much longer.
If the cancer doesn’t kill me, all this stress just might…
If you can’t pay, you don’t get the meds, don’t get the Hope. Hope for a new path, a more humane path… It’s a harsh reality.
Chemo might suck, but at least it’s “affordable”, financially anyway. Though the toll it takes on the body is priceless – and not in a “priceless - you win” way. More of a “priceless - killing you slowly and not knowing what future side effects you may experience while not promising that the cancer will not reoccur after you’ve gone through this hell” kinda way.
Getting the Gene Therapy meds directly from the manufacturer eliminates a great deal of cost and stress from my life. And, truthfully – 2 out of 4 is not bad. But Honestly, I was Hoping to get assistance for all 4. It would be different if I had insurance, if I Had the money to afford to stay alive – I’m simply doing the best I can to stay alive. I Want to stay alive.
There is no financial assistance, though, for the PB prescription – that’s a flat $4500/month and is manufactured by the Burzynski-associated pharmacy, and is a proprietary formula. So, even if I was able to get assistance for a generic brand PB, it would not be the formulation that offered the Burzynski “magic potion”.
And I Want The Magic Potion. At least Dr. Deleon says it’s in the PB that I’m getting… Those antineoplastons.
Tags: Patient Assistance Programs, Sodium Phenylbutrate, Tarceva, Xeloda, Zolinza, Zometa
Posted in Burzynski Clinic Doctors, Coping, Financial Assistance, frustration, Gene Therapy Drugs, hope, tired, venting | No Comments »
Today I was notified that my request for financial assistance with my Zometa prescription from Novartis was denied. I will be appealing. Otherwise, that’s a $1087/month hit…
Dang.
That makes 2 denied…
DANG.
Tags: Zometa
Posted in Burzynski Clinic, Financial Assistance, frustration, hope | No Comments »
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