Chemo drug shortage-BE CONCERNED AND ASK YOUR DR!

So, you may have heard this nasty gossip, there is a shortage of chemo drugs as well as other drugs like antibiotics and anesthesia. From what I can gather it is primarily in the US and Canada this is occurring but could have an impact world wide. Simplistic explanation is the pharmaceutical companies don't seem to make enough money on them so they decrease production or stop production. A number of years ago there was legislation where the intent for generic drugs was so that everyone could afford whatever drug that was needed to cure their issue. The problem has become that the generic drugs are not supporting themselves. The costs involved to keep these drugs in productivity exceeded the price sold or profit margins were so slim. The name brand drugs still are produced continue to create a large profit but insurance companies refuse to pay for these more expensive drugs and will only cover generic drugs. A nasty cycle and the loser is the patient. That loser is anyone you know who is fighting cancer and that happened to be me on my last infusion on Thursday 8/11/11. 
Never thought this would affect me but it did. My last infusion, there was no Taxol to be had. I had to take a cousin of it for me to complete my regime on time. I was offered to put off my infusion for a week or two but there was no way I was going to do that. Why risk it not being there. What I suspect could have happened was, my dose was given to someone else who was just starting their regime. Me, being weakened already, the cousin medicine would work just as effective on me. So now the decision of who gets the medicine or not is determined by the Dr. and how well he/she can ration what they have.


 So think about it, what is the moral obligation of a pharmaceutical company to continue to provide life saving medicines that are losing money or not generating profits that meet their goals? Well, there is nothing other then their sense of morals. No one can force a company to make a drug even though it saves lives. That is a scary thought. I am for free enterprise but this almost seems to have a sense of darkness to it or maybe a tinge of blackmail....."I'll make this drug if you (FDA) do this for me" There is legislation  going forward now that the goal is to have the pharmaceutical companies notify the FDA of a possible shortage well before it happens so the FDA can work with other companies to fill the void. Will this concept work? Maybe, but it still is based on the all mighty dollar and where a profit can be made. What happens if all the other companies don't want to pick up the slack?


So this goes back to the insurance companies now. Would this be such a big problem if they covered all prescribed drugs, generic and name brand? What needs to be done is a revision of the The Medicare Prescription Drug, Improvement and Modernization Act of 2003. Read about it in the 2nd article below. This would allow a more level playing ground for these drugs. This Act was a good idea but it's time has come. It needs to go or be radically modified. Less government intervention on pricing and your basic economy class in college comes into play. People are willing to pay a high price to get what they want (name brand drugs) but at some price point, they don't. This holds the pricing down on these drugs. As for the generic, same thing. People (or in this case insurance companies) are willing to pay a certain price and whoever can produce the drug at the least cost or lowest profit margin sells more. Profit margin smaller/lower price=sells more. Higher price/greater profit margin/sells less. Take your pick...which business scenario do you want?


Here are a few links to the current concern. How are they going to fix the supply? Well, their not for quite a while. So be forewarned...ask your Dr. will this shortage have an impact on your regime. 


Huffington Post Article  Explains the basis of the shortage.


Article that explains how government's best intentions have caused this shortage of drugs

one more chemo...one more chemo...

One more chemo. That's all I tell myself. When I get aches and pains, or I get

aches in my stomach or pelvis area, or the hot flashes, I remind myself the worst of it is behind me. I have one more chemo, radiation (28 days/m-f), exchange surgery from expanders to saline implant, exchange surgery from saline to silicone, nipple reconstruction surgery, and finally the tattooing of the aereola. At least I think that's the order. If all goes right maybe I'll be done in Dec.

I do finally feel the cumulative side effects of all the chemos. I am weaker. I

have a fatigue that won't go away. I'm grouchy more because I snap at Frank. We never fight except when he drives ( he drives like a madman but as he points out, he hasn't been in any accidents- Nevermind the trail of destruction behind him) 

I know I am getting physically weaker because I feel it at my Pilates class.

During the first regime I could feel my strength improving. The regime caused

nausea and overall yucky feeling for the few days after but then I was done.

This regime lingers with fatigue. Things I was able to do in class a month a go

are a struggle to do and I haven't missed a class, well I've rearranged them

sometimes when I haven't felt well enough to go.The AC regime I found myself hungry or craving things when the nausea would pass. This regime has shut off my desire to eat. I have to force myself to eat. Nothing at times seems appealing and it's not because of nausea. I just don't feel like eating. So when I don't eat, I get sick. Crazy cycle.

You would think if I was fatigued I'd be sleeping all the time but I'm not. I

just don't feel like doing anything but laying down. The afternoons are the

worst. If I do a big adventure in the morning I am physically feeling sick in the late afternoon.  Trying to keep up with the hydration also since I forget to keep drinking water. So I need to plan my days and get as much as I can get  done in the mornings since I know I will be feeling not so great in the afternoon.

My hair is very slowly coming back but it's not really hair. It's fuzz here and

there. I have started to lose my eyebrows and eyelashes-go figure! I seem to

have a half brow on my right side and a very sparse brow on the left. My eye

lashes have thinned out also. I can tell when I put on mascara. I am calling the plastic surgeon to get started on Latisse. It makes your eyelashes longer and thick. It is used for chemo patients as well but it is not covered by insurance. It is thought of as a cosmetic procedure. 

Funniest thing! We went as a family hot airballooning-up at 4:00am....talk about not feeling good in the afternoon, I was a zombie by noon. Part of the package they do is take pics of you in the balloon as it lifts off. Well we had to share the basket with a family from  England. So as we were lifting off the photographer is snapping away and I was thinking he was taking pics of just our family so I whipped my hat off figuring what the hell maybe we will use this as our Xmas card. Well once we viewed the pics it included the other family. Imagine their surprise seeing all of us complete with the bald lady.  Classic submission to Awkward Family Pictures! don't think they purchased that photo as a memory Keeper.

So, one more chemo...one more chemo....

Taxol #2, You are so much more friendlier on our 2nd date!

Hmmm, where did I leave off? Hysterectomy, fibroids, ovaries? I received a call confirming that I had fibroids in my uterus. Something that many women have but never know since they really don't do anything unless they grow. When they grow is when there are concerns. Fibroids can cause heavy bleeding during your period. They can also cause severe cramping. So lucky me, during this journey I have developed fibroids. F*ck! One more thing...add it to my gall stones.  My OBGYN suggested I get a hysterectomy and while at it, remove my ovaries too.
Well you know me, research, research, research. There are 2 options: a hysterectomy and removal of the fibroids, called myomectomy. The removal of the uterus, a hysterectomy,  I can do and seems as if there are little side effects other then the surgery itself. Then again, the surgery is minimally invasive unlike years before. Please see my link above for more info. There are a few different ways your uterus can be removed. I keep envisioning the small doorway and the piece of furniture that's too big and can't fit through, you just keep banging it against the frame....how do they remove your uterus if they don't slice you open? It is done using a procedure called laparoscopy .  Anyway...check the links for more info. This is a topic I will cover at a later time because there is a much greater decision involved, removal of the ovaries and reduction of estrogen. Isn't that what we want? Yes, but it may come at a cost to me later in life, heart issues, bone loss, increased chance of demenia all because of the abrupt removal of estrogen from my body.

I spoke with Dr. Gottlieb (my breast cancer Dr.) about all this. He had mentioned months ago there was a possibility that I could make the decision to remove my ovaries. The whole purpose is to reduce the estrogen in my body since the breast cancer cells feed off of the estrogen. He said this is something for me to consider but right now I needed to get through chemo, then radiation. At the end of that is when I should consider the procedure. Just a reminder...I still have my reconstruction surgery ahead of me too. So, this is not a decision I'm going to worry myself with right now. There really is nothing we can now since I'm in the middle of chemo. I need to be consistent with the treatments to provide the best benefit for me.
So, what was causing this intense abdominal/unterian pain during my first Taxol? This is the speculation from my oncologist. First off, I was the 1st patient of his that ever had these type of side effects I explained to him-lucky me. What he suspects is that my body may have been about to start my menstrual cycle. I have not had a period for years since I had an abalation of my uterus a few years ago to lessen my heavy periods. Once I had this procedure, I really had no period and could never tell if I had one. Anyway, the Dr. thinks my body was going through the actions of having a period when the Taxol was administered. Taxol can cause muscle ache and since my uterus is a large muscle and was "trying" to create my period, the Taxol zeroed in on my uterus, causing the labor like pains I felt all weekend. One week after the infusion, I did have menstrual spotting for a couple hours and then I was done. This was the first time in years I had any indication of a period. So is the Dr. right? I don't know but I am on my 2nd infusion and I have no uterine pain.

So. here we are, my 2nd infusion of Taxol. Can I say, what a difference! I am functioning. I received my infusion Thursday am. Thursday afternoon I tend to nap since I have the Benadryl in me still. Thursday night I spent awake I think because of the steroids. Felt pretty good all day Friday, even had friends over on Friday night. A few aches and pains but that was it. No nausea, thank goodness. I have been continuing the Clariten D for the Neulesta shot ( which I now receive on Thursday). I take Advil for the muscle cramping. I still take the Ativan to help with any nausea that might be hiding and to help keep me relaxed. I also continue to take the vitamins, L-Glutamine, and all the other stuff. Taxol is very tolerable. Much better then the AC. It is Sunday morning and I have a lot of aches and pains, mainly in my pelvis. I spent a restless night with hot flashes and some aches. I have a headache that comes and goes but overall it is tolerable. I don't feel like heading out to any parties and spending the time shopping with my daughter (college dorm shopping is right around the corner) but I'm good. I just want to stay close to home in case I want to lay down. Here's the scary thing, the next infusion I might have the same side effects as my first infusion. Crossing my fingers I don't because that was awful. Seems my hair is growing also! Very slowly but growing. So doing Ok.

So many things have been happening in our community with friends or acquaintances that are being diagnosed with cancer. I read their CaringBridge that chronicles what their experience is. CaringBridge is similar to a blog but an easier set up. All the updates with everyone seem positive. We have someone who is fighting leukemia again for the 2nd time in a year. We have someone who is fighting stage 4 lung cancer and is trying to prolong his life with chemo and finally another person who had throat cancer that has spread to his lung and bone. He is the person who I mentioned has stopped all traditional medicine. He is following a certain diet, drinking a certain type of tea, exercising. I have to admit it is curiosity that I follow his journal.  He is due for a scan. I wonder if his actions are working. I admit I have started to "fall off" the healthy wagon. I rarely drink alcohol, maybe a glass every 3 weeks. There is no desire to. I have started to have dessert again. I'll eat one of my cookies but that's about it. Again no desire to eat sweet things. I don't drink milk anymore. I don't eat red meat at all. I eat chicken and fish, once in a while maybe some pork. I eat alot of almonds, beans, veggies, whole wheat pasta. I'm just trying to eat healthier...but then I ate healthy before. Exercise, 2X a week I do Pilates. I try to get out and walk briskly but I'm just not full of energy. I think about it though!
I can see the end of this part of my journey. 2 more infusions and then I'm done. I will start radiation within 2 weeks after chemo. Probably about 5 weeks of radiation, 5X's a week. I'll rest for a few weeks then have the transfer surgery, expanders out, implants in....but that might be delayed also. I may have the hysterectomy first then reconstruction. Who  knows.
I don't think of getting cancer again. I'm pretty sure that part of my life is over. Thinking positive is so important but I just know it will not revisit me. I'm looking forward to moving forward with life. There is so much to discover!