Phase VI
My transfusion went fine and I really enjoy reading “The Help” I am bringing this book to my next treatment that is scheduled for September 21st; my blood work from last week looks good. My hemoglobin is up and all other levels are good. My CA-125 dropped to the lowest level all year at 1950. YES!!! I am Happy and doing the happy dance in my head. Yes, I know for many that is an outrageous number, but for me it is high, but not outrageous. As I mentioned in Phase I when I was diagnosed my CA-125 was 10,000. My GYN said that this number (10,000) is not representative of the amount of disease they found. That my blood is sensitive to the markers they measure. It’s a good thing, we just don’t know what a base line is for me. So we are winging it…
My September 21st appointment with my Oncologist is another appointment with an interesting conversation; we have had many during my visits over the 1 and 1/2 plus year. There is still no information that I am able to locate on Doxel’s drug shortage. I don’t know how long this is going to be an issue, but from the CBS report it looks like months. My doctor is not saying much about the shortage, except that it does not make sense in this day and age which I agree. The discussion went discussing that I must be a democrat and he is a republican and the inherent differences in our parties. Which somehow led to our different impressions of Obama-care. I feel something has to be done, our health care is unsustainable the way it is costs wise. Are flaws in the legislation? Yes, there is the answer is not to scrap it but to amend it. Now you have to understand I have worked in healthcare collections for like 25+ years. I understand many regulations that affect what I do and I read them regularly to stay on top of the ever-changing environment I work in. So yes, I did read quite a bit on Obama-care., my doctor was surprised by this. Actually I guess many people would be surprised that I read a good portion of it… Our conversation quickly focused on the “death panels” that the republicans really touted. So I explained what I read in the regulation, that it discussed the decision of curative care versus palliative care. The legislation states it rests with the doctor and the patient, as it should always be. I agree that it is an individual decision when a disease has progressed to a point that quality of life needs to be measured against the impact of curative measures and quality of life. That discussion is between a doctor and the patient. Hopefully the patient talks with their family as part of the decision. I continued that death panels have always existed in the private insurance industries. He looked at me puzzled and I proceed with my take on it. I have read numerous cases where insurance companies have denied care under the guise of “It is not covered under the Plan”, “It is a preexisting condition”, “It is an experimental treatment”. And my all time favorite that they don’t readily admit and I have experienced in collections is “it breaches payment thresh holds and payment is denied”… The individuals in these situations have had to sue insurance companies to get the care that should have been covered. The saddest thing is that 8 out of 10 times the patients have won which is great, but the cost is their disease has progressed to a point where instead of curing the disease, or getting it into remission, they are now treated to try and preserve days/months and hopefully year or two of someone’s life. If treatment would have been covered like it should have they could have had a full life… Then we talked of AMA recommendations versus Health Insurance companies’ standards of care and the disparities there in coverage… Yes that was one of many interesting conversations we have with my follow up appointments with my GYN Oncologists.
As noted in Phase V, there is no Doxil for this treatment and they expect some anytime now. I am to call daily and check if they have the drug or not. Hopefully it will come in the next day or two and not mess with my treatment schedule…
I made my call on Thursday morning September 22nd, 2011 as instructed by my doctor, and they did get some Doxel! They have a dose for me because someone else that day was scheduled to get it and was switched off that combo so I got it by default. Hell, I don’t care that I got it by default. I am doing a happy dance at this great news. I did learn that because my treatment was Wednesday and I didn’t get the drug that I went to the bottom of the list and that this was the only way I would be eligible to get it. Really? In this day and age, I was and still am shocked by this and yes a bit out raged, this is my life they are affecting. It is really unnerving that this is happening and the affect it can have. Sigh. Okay, I am now focusing that there is a treatment for me so on ward. Time to psych myself up for my treatment…
I took my 5 steroid pills in the evening before my treatment and again in the morning. I am ready for my treatment. Lynn and I arrive with coffee and snacks in hand, this will be just a couple of hours as I already got the Carboplantin on Wednesday. The infusion of Doxel starts and I am doing well. The nurse speeds it up and I am like holding my breath so to speak, waiting… I feel okay, not feeling flush. Thought I would check with Lynn so I look at Lynn and ask am I flush? She said no, you have that steroid glow going on, good color in the cheeks... This made me laugh, I know my checks have good color from the steroids and I am really happy that I am not reacting… This is a HUGE relief. My doctor stopped in after rounds at the hospital to check in and walked over to me and said, I see we scored some drugs for you. I laughed and said, yeah good drugs too… I just want this shortage to end.
I read on a Cancer Survivors Network a comment by woman wanting to know if anyone else had found they are more emotional now. She used an example about sitting in a theater and tears run down her cheeks, was this normal? I would say yes, I am more emotional now when I go to the theaters, movies, and birthday parties, hell any party. I am SOOO very happy to be here each day I awake… I am not missing on anything, enjoying every challenge, fun day I have. Megs has always laughed at me and says quite often “oh man mom are you crying again? Really, it’s a commercial…” Yep I cry even at commercials. Grant it I use to cry at different movies and such before and I would tell Megs not to make fun of me or she will find herself tearing up at movies too. Now it is different and my tears are not sad tears by any stretch, I cry Happy Tears… I am so very happy to be here… I value everyone and every moment in my life. Even when I am not feeling my best I am happy and focus on happy things in my life, my many blessings. Do I wish I didn’t have to go through this, of course I do, I wish no one had to go through cancer treatments. As I said in my previous posts, this has given me an opportunity to take stock in my life and align my priorities that make me happy. So are tears normal, yes they are… And I always carry tissues with me were ever I go…
Okay I was doing a little Internet searching on simply the word Doxel, Doxal, Doxil and guess what I found? I found the manufacturers website! No kidding. I laughed when I read what was there is actually a link called “Doxil C.A.R.E.S”. It strikes me funny, almost like an oxymoron. Here is the link so you can see for your self if you would like:
I am unfamiliar with the Doxil Cares program but I guess it is a way for doctors and infusion clinics to enroll their patients currently on Doxil so they are a priority in getting the drug. My Doctor must have a Business Associates Agreement with them and registered his patients, not sure. Will check next time I am there. There are also copies of the letters sent to providers regarding the shortage of Doxil, which I found to be interested in reading. The June letter indicates the shortage should be short lived. The July 19th letter says there will be some available in August and intermittently in the weeks thereafter, 1st time they advise not to start patients on Doxil due the shortage. Okay this did not make me happy as I started on the Doxil regimen on July 6th now 19th the shortage is such that new patients should not be started on it… Oh My… The August letters indicates how sever the shortage really is and Jenssen launches the Doxil C.A.R.E.S. program. The September letter indicates that availability will be intermittent over the next several months. Several Months… Oh My... I am not getting a warm and fuzzy feeling with this company. Reading these letters you learn Doxil not manufactured by Janseen, but they contract with a 3rd party manufacturer who had issues with capacity, which I heard were OSHA related... Also the September 23 letter is of particular interest as it says this 3rd party contractor that makes Doxil is getting out of the business… Really…? They have another contractor to take its place, and will be transitioning over the next several years to them. I guess not knowing this information would be more settling, than knowing this and feeling a bit unnerved. Something is to be said for being in the dark just going along with things. The other thing I find interesting is in each letter they keep emphasizing there is no generic version of Doxil available in the United States, so does that mean there is a generic available out side the U.S.? Makes me wonder…
No comments:
Post a Comment