July 1, 2012
The CA-125 is the tumor marker test for Ovarian Cancer. Portland Firefly has Primary Peritoneal Carcinoma, the aggressive, deadly sister to Ovarian Cancer.
Firefly has been doing great and her spirits are high. I still feel good, have very few symptoms, have some energy, my color is pretty good (not ashen grey). My hair has grown back to below my ears! My dark blond locks are now a stunning grey which my family and friends refuse to allow me to color! The problem is that this cancer continues to grow ~ yes, even while I have been on chemo these last 5 months.
But… do not be dismayed by this news; Firefly is not dismayed and shall explain the reasons to you now.
A normal CA-125 is 35 or below (0 -35). Firefly’s CA-125 in March, 2009 (three and a half years ago) before my first chemo was 3000. Currently my last result was the highest it has ever been 4854. Again, be not dismayed. Read on….
8/26/11 CA-125 was 19
11/28/11 jump to 668 Chemo/ Carboplatin
12/29/11 down some to 263 Chemo/ Carboplatin
1/26/12 142 Chemo/ Doxil
2/23/12 up again to 529 Chemo/ Doxil
3/27/12 422 Chemo/ Doxil
4/27/12 430 Chemo/ Doxil
5/28/12 skyrocket to 1153 Doctor ill til September; no chemo
6/11/12 tripled again to 3231 New Doctor, new chemo Gemzar
6/28/12 up again 4854 Chemo next week
Some of those numbers look scary but Portland Firefly is not disheartened. (Remember, I look good and feel good). Now I’ll explain while you look at the numbers above.
The CA-125 has been a VERY GOOD indicator for Firefly in the past. Doxil ( a drug that I was on last summer and again January through May of 2012) can change that indicator to being less reliable.
The 2/23/12 jump (from 142 to 529) was very disconcerting for Firefly, because it went up while on chemo, something that I had never experienced before.
Then the rise on 5/28/12 to 1153 indicated the Doxil was not working anymore and it was time to change Chemo drugs as the cancer had obviously changed. My Doctor became ill at this point and I had to wait almost two weeks to see another Doctor and schedule my next chemo.
We drew another CA-125 just before the chemo poison started flowing into Firefly’s Warrior Body on 6/12/12 with the result of 3231. This Cancer wants to devour my body!
Now, three weeks later, after the chemo Gemzar, Firefly’s Ca-125 has reached an all-time high of 4854!!!!! But wait, that is good news! Good news??? Yes, good news. This WAS an increase, but only a slight increase… not a double or triple as it had been in the past few months. And that means that the Gemzar is slowing the growth of the cancer! See? Good News!
So we will continue to pray that the chemo continues to work magnificently because I want, no, I need to have at least another 3 years. I want my precious Grandbabies to know me well enough to hopefully remember me. I never told anyone this before, (not even their parents) but they both have my eyes…
June 11, 2012
I have put off writing this post for several reasons… Lets see … where do I begin.
My last doctors appointment was supposed to be one and a half weeks ago, but my regular doctor was ill and unable to see me. So last Thursday, I was seen by another doctor ~ one I had seen previously whan my regular doctor was on a sabbatical.
This appointment was especially difficult for the new doctor because he had some important decisions to make regarding my treatment and he needed to read about 20 months of treatments given by another doctor along with studying my test results and reactions to chemo. It took him a long time to read over my chart but he was very well prepared when he came into the examination room to see me.
I like this doctor and I appreciate what he had to go through before he even saw me. Why, you ask? Here is the reason….
For the last 5 months, I have been on Doxil, a chemo with many dietary restrictions and side-effects. At first I had a very good response to Doxil, but the last 4 months, my CA-125 (the cancer tumor marker for Ovarian Cancer) has been going up. This last month it went up dramatically. To recap, normal is 35 or below and mine had been hovering around the 430 level for three months. This month it shot up to 1165 or so. That is an increase in 4 weeks of two and a half times. Firefly has been feeling well, having lots of energy, and able to get things done, but obviously the cancer is growing and rapidly. Knowing all this prior to meeting with the doctor, I already knew that I’d be switching to another chemo; the question was,”Which one?”.
In the past, this particular doctor mentioned that there is an arsenal of about 24 different chemos that can be used to fight my primary peritoneal carcinoma. It is just a question of finding the right one that the cancer will respond to at that particular time. Did you know that the cancer changes inside our bodies as time progresses? This is the reason that cancer becomes immune to certain drugs and is also the reason that doctors like to administer chemo when the cancer is actively growing. (If actively growing, it is taking up ‘nutrients’ and will also take up poison!).
So now I shall be starting on Gemzar with a different administering protocol than I have been used to having. This ‘jewel’ of a chemo is given one week, then again the next week, then the third week off. Then you start all over again. It is rigorous but the side-effects are supposed to be quite tolerable and it looks like I may be able to still keep my hair again. I am really liking having hair!
The plus side to this drug is that now I can eat all of the foods that were forbidden while on Doxil. I can also take hot showers and have a glass of wine. And don’t forget the massage! So all in all I am looking forward to getting started on this new course of treatment.
Please pray that I do in fact keep my hair, that my blood levels will remain near normal (low platlets is common with this drug), and that this ‘jewel’ of a drug, Gemzar, will give me a good response and allow me to have some chemo free months. I am getting tired of having to have chemo month after month after month…. I do have a life to live, you know!
I will keep you updated as the weeks go by. The big thing to remember is that I am told that I look good, the doctor was very pleased with the results of the physical exam, and my general health is great (except for the cancer, of course!).
March 15, 2012
I seem to be having minimal side effects from my combination of Carboplatin and Doxil. The biggest side effects for the latter half of the month is extreme fatigue. The first week I stay close to home, the second week, I try to get to the grocery store and the last two weeks before chemo, I try to get caught up from the first two weeks!!!
But I can only do one big errand a day and then I fall asleep during the evening news!
Let’s pray that this drug combo is working for me and killing the cancer, with God’s help and mercy.
February 24, 2012
Today I go and see my Doctor and get my Chemo. I was notified yesterday that my dose of DOXIL had indeed arrived and was waiting for me! This is great news for me. It is helpful for me to know ahead of time that it is there, because there are some preparations that I have to make before I receive the DOXIL infusion.
I cannot vacuum, cannot do laundry, cannot chop/prepare foods, cannot wash dishes, and I cannot wear any tight clothes. There are also food restrictions: no tomatoes, no citrus, no spicy foods. So my days prior to the infusion are busy with house cleaning and shopping and meal prep. I also cannot do any crocheting and so I have a supply of interesting travelogues to watch! And for two days after the infusion, I have to soak my hands and feet in ice water to prevent the blistering side-effects! So no typing!
I had minimal side effects from the last dose, so prayers for the same again this time.
February 21, 2012
If you have been following my story, you know that I had a very good response to DOXIL. You also know that DOXIL is no longer manufactured here in the United States due to manufacturing problems at the ONLY PLANT THAT MANUFACTURES this life-saving drug here in the United States. How can this happen here in the United States you ask? WEll, the answer is long and involved and has to do with J & J (yes, that J & J) owning the sole manufacturing rights and their sole manufacturing plant under Ben Venue is the plant that has equipment breakdowns.
It has been a full six months since I received the drug, DOXIL. I had to go on another chemo (which doesn’t work as well for me). Then, out of the blue, I received one dose of the DOXIL which I had the end of January. In three days I am supposed to go and get a second dose, but it is unclear if the drugs have arrived yet. So I don’t know if I’ll get the DOXIL or not!
Then this morning the FDA announced easing up on restrictions so that the drug can be imported into the US from foreign manufactures without the rigorous FDA testing route. This is the same drug, but it has a different name — LIPODOX.
So, I’ll just have to wait and see if I get more of my life-saving drug or not!
February 7, 2012
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
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.
October 11, 2011
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!
September 18, 2011
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
August 18, 2011
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 16, 2011
So… I had chemo yesterday. I had to go to another facility on the other side of town for my infusion because there is a nation-wide shortage of my drug, Doxil, and only one clinic had the drug.
Last night I thought that one of my toenails looked like it was lifting up. This morning that suspicion was confirmed. Yes, in just a few hours this life-saving poison has caused one (I hope only one) of my toenails to completely lift up and it is now about halfway off. It seems that there is nothing that I can do about it at this point. I just need to keep it clean so it doesn’t get infected….
And since it is summer, the food lady from church is on a month-long vacation – I wondered why I hadn’t heard back from her – so I’m on my own for food. I’m Ok, don’t worry; Firefly has food. Fortunately on Thursday I stocked up on easy to prepare food from Trader Joes along with tons of yogurt from Safeway. Then Thursday night I cooked up some entrees for later on and put them in the freezer.
Now for the great news that goes along with my Chemotherapy…. My CA-125 results.
To recap — CA-125 normal is 35 or below.
May 2011 1618
June 2011 757 – dropped in half
July 2011 47!!!!! So this drug is working also….
There are a few reports – not many - of women having a complete remission after this drug and I am praying that I will be one of them. I am willing to endure the side effects if it means that I can live basically symptom-free for several years… Oh how I would love that!!!! What a dream that would be.
PS: Shortly after this post published, the food lady called me. She is bringing over Mac-n-cheese for me tonight… so I guess she is back from vacation and I’m getting food!!! I’m glad, because I am having an energy drain. Time for a nap….
June 22, 2011
I started on a different drug for my Ovarian Cancer recurrence. My CA 125 had skyrocketed to 1618 (normal is 30 or below) just before my first Doxil infusion May 13, 2011.
It is usual for there to be a 2 to 3 month lag time in any measurable results from this drug Doxil, so we were not expecting to see any decrease in my CA 125 levels. In fact, they often increase the first month on this drug.
Enter Amazing Firefly!!!!! When I went for my second infusion on June 17th I had hoped for a decrease in my CA 124 level because of how I was feeling. I was not experiencing hardly any pain, other problems that had been very apparent had greatly lessened and my energy level seemed to be a bit higher. The lower abdomen pain/gurgling was almost completely gone and my color seemed better, not only to me , but also to my family.
Ah, yes! My CA 125 had indeed gone down! It was now at 757! Another one of my favorite airplanes! Yep, it had decreased by about half! Everyone at the doctor’s office was happy about that including me!
And so, I had my second infusion of Doxil and went home to rest some more while I fight this sneaky opponent who is trying to invade my body. Is cancer like the ‘invasion of the body snatchers’? Well, I must fight to keep it from invading my body any more! Go Doxil!!!!
May 27, 2011
Ah, yes! Today I am feeling better. So well in fact that I actually got dressed for the first time in 8 days. And then I took sweet understanding Mercedes for a nice medium walk — her longest one with me in over 9 days! And then… we went for a ride in the car. She loves to ’go bye-bye’ in the car. I needed to go to the bank, so we did the drive-through bank (which is 3 miles away instead of .5 mile) where she always gets a little treat and I picked up a Subway salad. It was nice to go out for little drive and I didn’t even mind the afterschool traffic which usually I try to avoid.
All food still tastes not very interesting… In fact, I had two grape popsicles for dinner last night! But Shepherd’s Pie, courtesy of Jeannie is on its way for my dinner tonite! I especially like it when a little dessert is also brought along!!! We shall see!
May 24, 2011
Doxil is a cancer killing drug that is administered via infusion (injection into the vein). It is ‘wrapped’ inside of liposomes so it is sort of ’slow-released’ over the course of 2 – 3 weeks.
On my other chemo drugs, the worst side effects usually occurred on days 3-5 with residual until day 10 or so, followed by the lowered blood counts until they started to climb just before the month was over. And then it was time to start all over again. The side effects became progressively more toxic as my treatments progressed.
This toxicity is the reason why some chemo therapies must be discontinued for certain patients. The reason that I am starting on this new drug is because my 2nd recurrence is coming so close to my 1st recurrence and therefore the protocol is to change drugs, since obviously the other drug did not give me a ‘remission’.
With Doxil, the maximum ill side effects do not manifest until day 5 and lasting until day 10. It is a whole different ‘ball game’ so to speak. The rules are completely different. Maybe the outcome will be different also. The main side effects of this drug ~ Doxil ~ is blisters on the hands, feet, mouth and tongue & throat. To prevent these blisters, you are supposed to ‘ice’ your hands & feet and suck on ice chips during the administration of the chemo –which takes about two hours. Then you are supposed to ice your feet and hands as often as possible for the next many days. Along with this, no pressure is to be put on the hands or feet and no repetitive motions. No typing. no vacuuming, no sweeping, no washing dishes, no chopping food, etc.
As far as food goes, there are many restrictions … nothing hot, nothing spicy, nothing citrus, nothing acid. All food is to be consumed at room temp or below so I heat up my food, then let it cool down before I eat it! Oh, no hard vegetables and I only eat my beloved apples if they have been ‘softened’ as in apple crisp! The wonderful ladies from my church (make that Suzy LaFrance) have made sure that I have had meals that I could eat. This is a wonderful ministry and one that I am very grateful for especially because I did not know of all the food restrictions prior to my infusion on Friday so I could prepare my food ahead of time.
I have alredy been on the computer too long right now… my hands are starting to burn… time to soak them in ice.
May 19, 2011
I’ll start with the health update first. Normal Ca -125 (the blood test for ovarian cancer) is 30 or below. Mine went from 18 to 53 in March. In April it skyrocketed up to 553. Normally I would have started Chemo at that time, but since I was feeling pretty good and had no pain or major symptoms we decided to delay. I was hoping to be able to wait until next week, but that is not going to be the case.
I’ve started having constant abdominal pain and I just don’t want to deal with it any longer. Since I will eventually need to have chemo, I am ready to start now. We are trying to get my appointment rescheduled for this Friday ~ tomorrow. I still do not know what my CA 125 is at this time, but I’m sure that it is quite high. I’ll get the results at my appointment.
Since this second recurrence is coming so close to my last recurrence, I will not be able to be given the carboplatinum that I have such a good response to. My doctor will be giving me a drug that is new to me ~ Doxil. the side effects are different and I have no barometer as to how I’ll respond to it or what side effects I might experience. Some of them are quite unplesant — blisters on the hands and feet, mouth, tongue and who knows where else. So prayers are definitely in order if you are so inclined. Other than that, no hair loss!