February 7, 2012
Understanding Doxil
For many months now, there has been a shortage of Doxil here in the United States. I have been too chemo-brained to fully understand it, but over the last few days, I have discovered some information that helps to make sense of the ‘Doxil Maze’. Doxil is a chemotherapy drug that has a different delivery system to the cancer cells and therefore is of great benefit to many long-term cancer patients who have become resistant to other chemotherapies. The drug works particularly well for women who have Recurrent Ovarian Cancer.
Doxil is the name for the generic drug of doxorubicin liposomal.
Ben Venue is the sole contract manufacturer of Doxil for Janssen which is a subsidiary of Johnson and Johnson. Janssen holds the patent in Doxil.
It is my understanding that there are manufacturing problems which have resulted in the nationwide Doxil shortage.
January 31, 2012
Chemo Again
I had chemo last Friday. One of these days I’ll have to total up the number of time that I have had chemo. I think it is pushing 40.
This time I had part of the Doxil that was allotted to me. Doxil is the main Ovarian Cancer drug that is experiencing a shortage. I started on Doxil last May or June and had a very good response to this drug. I also had level 4 side effects due to the toxicity of the drug. Because of the toxicity I went off of the drug for a few months; this was when the national Doxil shortage became apparent to the medical community. My doctor immediately put me on the Doxil waiting list and that was the last we heard from Doxil. When I had my 3rd recurrence this Fall, I went back on a drug that I have had in the past with success — not great success, but acceptable success in fighting my cancer.
When I went in for Chemo the end of December, there was a surprise for everyone at the clinic….. Doxil had sent a dose of the life saving drug for me. With my name on it. No one else could have this dose of Doxil…. it literally had my name on it and no one elses!!! This was the first Doxil that my cancer clinic had seen since the summer… and I was to be the lucky recipient! The drug was shipped in two vials, one considerably larger than the other with the total dose being what I received during the summer months with good results. It is unknown when Doxil will be back in production in the United States. So… in an effort to make it last and not knowing if I would receive another life-saving dose, and in an effort to reduce the side effects, my doctor and I decided to only give me the large vial of Doxil. That way if no more is received, then I can at least have a ‘smidgen’ of the drug next month if no more comes in for me.
I have heard reports that Doxil is available in Canada and also in Europe. With my travel benefits, either one of those might be a definite possibility. I think I’ll do some advance research with my doctor and see just what the procedure would be if I do want to go to another country for this drug.
Meanwhile, you can pray that I have no ill side-effects and that I will also be ‘gifted’ another dose of Doxil right here at home. Because to receive this lifesaving drug is truly a gift to me.
January 17, 2012
Procrastination to the Nth degree!
OK, today I am feeling a little bit better. I have forced myself to take sweet Mercedes out for a walk every day. Not necessarily a long walk by others standards, but long by ours. We usually walk for about 5 -8 minutes on a good day. So I have thoughtfully tried to bump that up to at least 15 minutes a day with a couples of extra smaller walks thrown in.
I still have low energy, and would just like to hibernate, it is the middle of January — so I am acting like a lazy bear. Even though there are several good movies out now, I don’t even want to get dressed and go to the movie! I need to get a pedicure before my next chemo, so I actually called the salon today, but wasn’t ready to make an appointment. Maybe tomorrow! There’s always tomorrow. I guess my mantra right now is “Don’t do today what you can put off til tomorrow!” Yep, that’s exactly how I am feeling! Do it some other time.
January 15, 2012
Hi!
I cannot believe that is has been such a long time since I posted. I am doing fine… I tolerated the carboplatin chemo just fine with minimal side effects. I now am suffering through a period of depression that I am having trouble shaking. Oh, I continue to do a few things and to get out of the house now and then, but I would really just rather lie around in my jammies all day and crochet or watch TV or both. Oh, and spending endless, mindless hours on stupid computer games…
I’ll get through this… it’s just a phase, but there it is and I am owning up to it!
December 30, 2011
Chemo Today
I had chemo again today…. this is the second time for my 4th go around with Ovarian Cancer (actually I have PPC Primary Peritoneal Carcinoma). My CA 125 (a test to measure for Ovarian Cancer) was 669 one month ago. Yesterday it was 226! Good News! This means that the drug I am getting ~ Carboplatin ~ is working. Also the larger than golf ball sized tumors are not as large as they were a month ago! Yea! Now I am off to ‘recline’, ‘hydrate’ and rest! Tomorrow, I’ll make myself go for a walk!
December 26, 2011
So, How Are You REALLY Feeling?
This question “So, how are you really feeling?” is asked of me often. So here goes…. Are you REALLY ready for the answer?
I am feeling well. Not good, not fine, not great, but well. I am not well, but I am feeling well. I get tired easily, but… I have been able to do most of the things that I wanted to do this holiday season. And enjoy them while doing them.
I did not get everything done that I wanted to do… but who does?
I started my fourth go-around for chemo on Nov 30th. I am in my 3rd recurrence after my initial diagnosis on March 20, 2009. Since I did not want to lose my hair again, I opted for just having the carboplatin along with its supporting drugs administered at chemo. No taxol this time. At least not right now. If I respond well to just the carboplatin, then I’ll continue with it for 4- 6 months.
My color was very bad when I re-started chemo on Nov 30. It has been very slow to come back around to a little more pink from the ashy-grey-yellow it was the end of November. Actually it isn’t exactly pink right now, just a lot less grey-yellow; and more of a pale color. I do have almost constant reflux, nausea, nightly night sweats and some leg pain. But these do not preclude me from doing what I want to do on a daily basis.
I try to pace myself for my activities and I just sit down when I need to! So, I have a few more days to get things done before the next dose of chemo!
December 17, 2011
Headache Gone
I went to see my doctor last Monday morning — She thinks that I had a virus of some sort. Now that it is almost a week later…I have to agree with her.
The only symptoms that I am having are the same ones that I have had for a few months…
My color was not so good – sort of ashy grey yellow, but I have ‘pinked up’ a little bit. My energy level is such that I really have to space out my errands and rest when needed. No shopping marathons for Firefly this Christmas Season! I do love online shopping right now!
December 11, 2011
Not doing so Well
Friday afternoon at 5:00pm, I started in with a horrible headache. Friday after the doctors have all gone home!!!! Just my luck! I was so foggy brained that I couldn’t think straight when my Doctor returned my call (via the answering service). I could hardly answer her questions coherently.
I also ‘thought’ that I noticed ~ thought is the operative word here ~ that my urine was getting slightly darker during the afternoon, but I hadn’t watched it long enough to tell for sure. I was too foggy brained to mention it to her! DUH!
Well by Saturday morning …. I was sure. Back ache, night sweats all night long, headache (gone thanks to pain meds) darker urine, feeling disoriented. So I called back. this time I got the Physician Assistant — but she didn’t want to give me an antibiotic. And she wanted me to got the ER ‘so I could be evaluated’. By a strange doctor! I refused to go to the ER with my blood count low ~actually at it lowest in the treatment cycle ~ and sitting for 6 hours with people coughing, sneezing, puking, and being exposesd to lots of unnecessary germs so I said that I’ll just have to wait it out.
Fever got worse… urine got darker — I called back. The PA said she would call the doctor on call. NOT MY REAL DOCTOR who knows me and knows that I know about my body– but some doctor on call who doesn’t even know who I am. The PA called back and said that I needed to go the ER. I refused for the 6th time and said something like — I’ll just die at home, but I’m not going to sit in the ER for 6 hours with all those germy people and then wait another 5 hours to get admitted and another 6 hours after that for someone to decide what to do with me. I just was not going to do it!
That is what happened to me when I went to the ER when I was first diagnosed with Primary Peritoneal Carcinoma.
I refused again and she said, we will call in a RX. Hallelujah!!!
I had already found a drive through pharmacy so all I had to do was put doggie in the car and drive there in my jammies and robe and slippers and pick up my Rx. On the way home we drove through Taco Bell and I got a salad— I can’t remember the last time I went to Taco Bell . Maybe 1996???? I hadn’t gotten dressed for several days due to not feeling well!
Within two hours of the first pill, I felt better.
But I’m off to the doctors first thing Monday morning to see what tests MY DOCTOR wants to run!
December 5, 2011
Urn Shopping
Hey, don’t get mad at me… it’s a fact of life. And nobody knows my tastes better than myself. If my ashes are going to be in something ‘forever’ then it better be something that I love! Can you imagine wearing a dress you hate for the rest of forever??!!! Anyway, since I am feeling good, I decided to do some online ‘urn shopping’. It sort of takes the fear out of it; besides I don’t want my children to have to make a decision about what I’d like to be in forever. Call me a control freak if you want…that’s Ok with me… but it’s going to be something that I really, really like!!!!!
So far the winners are all white with silver/pewter or maybe with a brass base and some white cloisonné. My absolute favorite isn’t big enough for me— only for someone 50 lbs. so now I have something to look for… And at least I have eliminated a whole bunch of urn styles that I do not like! And when I find ‘just the right one’ I might even buy it!
At lease no one will be ‘shopping under duress’.
Now for those of you that love me, I want you to understand something. I am not ready for the grave yet. I am just trying to get certain things in order as they approach me. I am feeling very well, I am doing very well and I expect to make that 6 year mark when my grandson walks into his first day of kindergarten! That means several more years of birthday parties for Grandbabies and Children and everyone!!!
December 4, 2011
CT Scan Update
OK, I know, it’s more than one day later. Give me a break! I just had chemo… I’m doing very well to get out of bed and take little Mercedes outside several times a day. The sun has been shinning here in Portland for the last few days and it is to continue for the next several days! Yeah, sunshine ! A few hours ago, the ‘brain fog’ started to lift slightly. I am still being very proactive against nausea, and I am eating little bits of food several times a day… and I get up and walk around every now and then. No nap today, but I bet that I climb into my nice warm bed pretty soon…. I think I hear my pillows calling to me……
My CT Scan was done last Monday. It showed two golf ball sized fluid filled cysts and several smaller ones. It seems that my small intestine ( and something else — too lazy to look it up) is ‘glued’ to the back of my abdominal wall.. so it doesn’t ‘move freely’ like it is supposed to. No I didn’t even bother to ask what that meant. I am just hoping that everything resolves itself with the chemo.
All in all I am feeling pretty good.. had some fatigue last week and a lot of weirdness – light-headedness some minor nausea contained with drugs. So I need to finish getting things done!!! Like that’s really going to happen!!!!
December 2, 2011
More Chemo Up-date
Today is Thursday and I the sun is shining so I went for two nice walks. Then I remembered that I needed to go to the Doctors for a shot of Neupogen… since this chemo destroys red & white blood cells as well as platelets.
I felt sort of ‘weird’ while waiting to be taken back to the chemo room for the chemo nurse to administer my shot, but just figured it was a while since I took this drug and I did take a Zofran to keep me from throwing up all afternoon…. so I figured it was just the drug cocktail in my system.
Well, Patty, the oncology nurse was very observant and asked if I had been drinking water today. My inappropriate reply was “I just had a hot chocolate with peppermint tea in it, yummy.” That was when she looked me right in the eyes and repeated the question, using my name. Hummm. Where was I. My blood pressure was very low –86/56 so she hooked me up to an IV and gave me some fluids, covered me with a warm blankie, and I fell fast asleep for over an hour. She gave me my Neupogen and made sure I was OK to drive home and gave me a special hug before I left. Boy, did I need that hug. And I had to promise to drink lots of water!
Now that I’m home, I am feeling sort of weird. Kind of light-headed, but I am hydrating and I did eat a little bit of pizza. Maybe I go get a ‘cuties’ clementine. Tomorrow, I’ll tell you about the CT scan results.
December 1, 2011
Chemo Catch-up
Upon Physical Examination on Monday, My Doctor needed to order a CT Scan before I had my Chemo. So… Monday ( I lefet the drs office) and off I went to the Hospital for yet another CT Scan.
Back to the Drs early Tuesday morning for Chemo. No Doxil, so I went back on Carboplatin with supporting drugs. 5 hours of infusion made more tolerable with a nice visit from a sweet friend and naps on either end of the visit!
Wednesday I felt good…
November 3, 2011
NED
The letters NED have significance regarding Ovarian Cancer.
If a patient is not cured (which I was not) then there is no such thing as remission for OC. The term that is used is NED ~ No Evidence of Disease.
I have never been NED since my diagnosis. But I did find a different definition of NED that does fit my situation.
NED ~ Not Eligible to Die!
So I will hold on to NED for as long as I can!
October 27, 2011
Blood Test Results
Well, I had my blood drawn again yesterday (in preparation for my Doctors appointment on Friday) and my CA 125 is again elevated. Two months ago, it was 19 (normal is 35 or below); last month it was 20 (1 point is no big deal); and this month it is at 99!
This came as no surprise to me as I have been feeling mildly symptomatic for the last several months. But… I also have been feeling very well and my energy level has been high. This has enabled me to start sorting through things which is something I have not had the energy to do for over 4 years.
Because quality of life is very important to me at this time, and the chemo will make me feel worse than the cancer makes me feel, I will forego chemo this month. Not to be concerned…. I will certainly resume chemo when I feel it will do me the best good. Besides, there is a drug shortage of many chemo drugs specifically, Doxil, the one that I was last receiving.
This rise in my CA 125 level will prompt me to have the ‘what are the possible scenarios regarding life expectancy’ conversation with my doctor again. I remember the somber tones and the difficulty that my Son had the first time he uttered the phrase “What does this mean in terms of life expectancy?” That was about 18 months ago and I remember seeing him swallow hard as he searched for just the right words to say. I have outlived the average life expectancy by 6 months so far and for me the end is not anywhere in sight. Not for at least a few more years if my great attitude has anything to do with it! Now for me, it is just another expected test result. We just have to decide what will be done next.
I am not worried about it, so PLEASE don’t you be worried about it.
October 11, 2011
Drug Shortage Continued
I am starting to become ‘symptomatic’ I’ll be having my blood work done in a few weeks at the end of October with my doctor’s appointment to follow. I called yesterday to make sure that I was on the ‘short list’ for my chemo drug, Doxil and today I was informed that there is no doxil. Who knows what drug my doctor will come up with to give me; I ‘m sure glad that she is the expert and not me!
October 4, 2011
Drug Shortage Petition
Some of you may know that there is a drug shortage for many cancer treatment drugs. Here is a petition if you want to sign it. After you sign on the petition, it will take you to a page where they ask for a donation. Just close out the window and your petition will be accepted without a donation. Thank you.
Drug Shortage Petition
Many women in treatment for ovarian cancer have been affected by the drug shortage.
In an effort to foster action, the Ovarian Cancer National Alliance has put together a petition.
Please click on the link below to view and sign the petition.
September 30, 2011
The General and The Warrior
I had my regular doctors visit the other day. Actually it was delayed by about a week because of an illness in my doctors family. No problem. I have been feeling well, so I went to the appointment in high spirits.
Since I am feeling well and my CA-125 only went up one point (from 19 to 20) we decided that I didn’t need to have chemo yet. We had a thorough and very good conversation as I wanted to touch on End of Life issues with her again.
Yes, we have had this conversation a few times over the course of my illness and it is always better to have this type of discussion when you are not in the middle of chemo brain and feeling sick. Usually one or both of my children are sitting in on the conversation, but today it was just the two of us. We have a strong respect for each other and acknowledge that we are a team in this fight. She ( I have a fabulous woman doctor) is the general and I am the warrior. The general directs the battle and the warrior does the fighting with the weapons available to her. However this warrior has the option to question and disagree with this general but I usually leave the decisions to her because I trust her with my life. Literally. And she knows that.
I am so lucky to have her for m y doctor!
September 18, 2011
Doxil Drug Shortage
The chemo drug that I have had most recently, Doxil, is in short supply. It has been unavailable at most cancer centers for the last three months. As you know, I had Level 4 (the worst) side effects with my third dose of Doxil and my doctor gave me a little chemo vaca while my body recovered from the Doxil. I am doing well, and feeling good and some of my energy has returned. This means that I am able to get a few things done that have been calling to me for the last three years!
Here is a link to a CBS News video about the Doxil shortage: http://www.cbsnews.com/video/watch/?id=7381127n
September 14, 2011
Arsenic in Apple Juice
Today, Dr. Oz’s show focused on the amount of arsenic in Apple juice. Yes, the poison ~Arsenic~ in the juice that we give to our little ones!
The results are astounding! Most of the juices are made from apple juice concentrate. And the majority of them use concentrate from CHINA, which has no controls over the amount of arsenic allowed in products. The concentrate is shipped to the US in big barrels and the US companies are mixing it up with water. After it is boxed up it is sold in our grocery stores and served to our children. It is not tested by the FDA to my knowledge.
Arsenic is a toxic poison. Extreme amounts can cause death. Smaller amounts can damage individual DNA, cause cancer, brain problems, and other things. Not what we want for our children!
Usually apple juice that is made from concentrat from the United States is safe. Be sure to do your homework regarding this issue…
10 parts of arsenic per billion parts is what is allowed by the USDA. Dr. Oz had several products tested from grocery stores all over the US. I know that you have had at least one of these and most probably so has your child!
Minute Maid 2 – 3 parts
Apple & Evie 3-11 parts
Motts 4-16 parts
Juicy Juice 2 – 22 parts
Gerber 6 – 36 parts
For more info go to: www.doctoroz.com
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September 2, 2011
TIE ONE ON Purchase Information
Hello Readers. My book, TIE ONE ON, A Head-Scarf Tying Guide for Chemotherapy Patients is now available. Currently I am in the process of have a dedicated web-site created that will have paypal capabillities. But for now you may order directly from me.
TIE ONE ON retails for $30.00 with shipping extra. BUT….if you order directly from me, your cost will be $25.00 with free shipping. This will include a personalized note as well as an author signed copy.
Send your check or MO for $25.00 to :
TEAL BOOKS
P.O. Box 5151
Aloha, OR 97006
Books will be mailed immediately, but plese allow two weeks for delivery.
If you order 10 or more books, they are $20.00 each ($200 for 10) with free shipping and also author signed.
Thank you for your orders.
September 1, 2011
WEAR TEAL DAY
Tomorrow, September 2, 2011 is WEAR TEAL DAY. This is a way to advance awareness of Ovarian Cancer, its signs and symptoms. So get out your teal, aqua, turquoise colored tops, capris, shoes, and wear them with purpose! Oh and paint your toe nails teal, too!!! You are gonna end up loving it!
August 18, 2011
Chemo VaCa
I had my Doctors appointment last Monday and there is good new and bad news.
The good news is that my Ca -125 level has now dropped to a respectable 19. Three months ago it was at 1618, then 757 the following month. Last month it was at 45 before my third chemo infusion of the Dreaded Drug Doxil.
I have had sever reactions to this last chemo… all of them are what is considered level 4 (the highest and worst level of side effects). In fact, I am still having side effects after 4 1/2 weeks! And no, it isn’t fun. And yes, I am tired of the side effects. They are wreaking havoc with my everyday life!
So… I am now on a little Chemo Vacation. time to give my battered warrior body time to heal itself and recover from the poison it has had to deal with for the last three solid months.
The side effects have been blisters like I never knew existed! blisters on the top of my toes… painful and bothersome. Blisters on my entire upper legs. Still there after three 1/2 weeks! Blisters inside of my mouth! I had to drink my meals for over a week. And very, very dry skin…. itchy and itchy….
And don’t forget the unrelenting fatigue. I have to nap every single day!!!
So I am looking forward to this little chemo vaca.
July 28, 2011
Feeling Better
Today I am feeling a little better. The Triage nurse, Robert, called me and suggested that I also rinse my mouth with salt water. I like that idea and wonder why I didn’t think of it myself! That just tells you how unclearly I am thinking, because it is probably one of the first things that I would suggest to someone!
Any way, I have been using baking soda rinse, and a medical concoction called magic mouth. It sort of helps to heal and numb the mouth sore pain. Now I use salt water rinse first.
I could hardly eat yesterday, so I called my sweet neighbor who has brought over ‘green drinks’ for me occasionally during the course of this cancer. I took over some fruit and vegetables and she juiced and pureed them for me. I at least had some nutrition for my battling body. Then I called a friend of mine who sells high dollar juicer/blenders. They brought a sample machine right over that I could try out…. So thank you to my ‘blending angels’ for making it possible for me to have some high quality nutrition and to be able to prepare it myself.
One of the other problems is that my immune system has also been attacked by the poisonous chemo drugs and so I am unable to fight off infections and help my body heal as it would normally be able to do. The practical result of these problems is that it takes longer to heal, so I guess these sores will be around for a while … I wonder how much weight I’ll lose?
July 25, 2011
Chemo Update
Well, Portland Firefly had chemo 11 days ago. This was my third infusion (fancy word for chemo) of a drug called DOXIL. I now have a love/hate relationship with Doxil.
I love it because I am having a very good response to it and the side effects are minimal.
I hate it because the side effects are putting me at the end of my rope. The Doxil side effects are very different from the previous side effects that I experienced while on Carboplatinum/Taxol.
Yes, there is the constipation and the slight nausea. I have figured out how to keep those under control. The new thing is that I must stay out of the heat and the sun; the same thing for any thing that I ingest. I thought I had that figured out, but evidently not. Yesterday the inside of my mouth broke out in mouth sores… my mouth is sore that it hurts to eat! I just had 2 popsicles for lunch!
Also the tops of both of my legs from the groin to the knee have broken out in tiny little bumps which cover my entire upper legs. Uncomfortable? Yes. Impossible? No. Irritating? Yes.
Add to that the problem with my second toe. This problem started even before I finished receiving the drug in the treatment room. My toe nail started to lift up. It lifted up more before I was able to get home. By day three, the poor little toe was swollen to twice its size with a big “Doxil Blister” that ran its entire length. There was another one between the toes. That one popped by itself the third day, but the other one just kept on growing.
Finally yesterday, it started to ooze out some of the fluid, which started to relieve some of the pressure that I have had for the last 11 days. But it wasn’t until this morning that most of it drained out. I thought that all that had to happen now was to keep it covered and dry and clean.
But no! Now it is filling up again. Add to that the uncomfortable leg rash blisters, and my swollen and sore mouth and Firefly is pretty much ready to give up. And so… I hate these side effects… I’m going to see if I can eat a big juicy peach and watch some inane thing on TV or maybe read a book. Or take a nap… or …..
July 19, 2011
HOLLYWOOD
Did you Know?
The Hollywood sign was first erected in 1923. Conceived as a real estate ad, it originally read Hollywoodland. The sign stands 50 feet tall, stretches 450 feet across, weighs 450,000 pounds.
