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.

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.

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.

I’ll get through this… it’s just a phase, but  there it is and I am owning up to it!

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!

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!

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!

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!!!

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!!!!

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.

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…

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!

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.

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.

Drug Shortage Petition

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!

Here is a link to a CBS News video about the Doxil shortage: http://www.cbsnews.com/video/watch/?id=7381127n

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

 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.

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.

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?

  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 …..