Hi, Here is my latest update:

I saw the vascular surgeon (Dr. Jones) on March 29th - this also happens to be the birthdate of my oldest son, who died in 1992, so it is usually a sad day for me, but although I did spend it in remembrances of my son this year I tried to focus only on good memories of him, and that, along with the news I received from the doctor, helped.

They did Doppler ultrasound tests on my arteries, and they sounded so good near the tops of my legs they did not feel they had to pursue it any higher (this was good news), and it was only in the ankle and my feet where there is some blockage, and it is not as severe as they feared it might be.  This was good, because it can still be reversible, according to Dr. Jones.  He says that if I quit smoking, and use the treadmill, it will go a long way toward reversing the damage, and it will prevent it from worsening.

Very poor circulation in the feet runs in my family, and I have smoked cigarettes for 50 years now, so both those were big strikes against me.  Then with the tiredness and illness of cancer, along with 4 months enforced bed rest last year, it really caused this problem to rapidly worsen.

All in all it was very good news, and I'm proceeding with my plan to quit smoking April 14th.  I had a friend who asked why I was waiting, so I'll outline the reasons here for everyone.  I've tried to quit smoking a number of times, beginning in my late 30s, unsuccessfully.  There were mitigating circumstances each time that are not there any longer.

What is there at this time is the fact that all this serious illness has had some effect on my resolve, and I wanted some time to "beef that up" and prepare myself more fully for this challenge. It should be obvious to everyone that if I have not quit by now, I have some serious problems with quitting.

I think a lot of that revolves around the fact that I've always been a nervous person at heart, and it is a crutch.  Habit also plays a strong role. Removing something that has been a part of your life many times a day, every day for 50 years is making a very big life change.  I am considering another change at the same time, that will make it worse at first, but in the long run may help me achieve success.

I had had little soda pop when I married at age 17, and my husband and his mother drank a lot of Pepsi Cola - I began drinking it, too.  I am still drinking it, quite a bit each day, usually 4 to 6 cans of it.  One of the things I read at some time or other said that changing whatever you'd been drinking along with smoking would help.  I have been thinking about quitting the Pepsi for some time.  It has a lot of caffeine that I should not be drinking, and I dislike the bloated feeling the carbonation gives you.  I did stop drinking it at one time, but I simply exchanged it for caffeine-free, diet Pepsi.  Then there was all the stink about the aspartame it contains, so I stopped that and went back to Pepsi, because I had a lot of headaches and indigestion while drinking it.  So, I'm hoping to stop drinking soda altogether, except occasionally, and drink more water, and juices.  I do drink juices regularly, but know if I didn't drink the other I'd drink more juices, which are better for me.

Danny, my son, quit smoking a couple of months ago, and he said he spent a month examining each cigarette and focusing on how bad it tasted.  I've been doing this, and going further - focusing on how bad it smells, and how bad it makes my clothing and my hair smell.  I've been reiterating the bad things about smoking, and then focusing on all the good things that will come from not smoking when I quit, and it has strengthened my resolve some.  I plan to continue that this second two weeks, and also to gradually decrease the amount I'm smoking, so I'm not smoking so much when I quit.  I found out in previous attempts that this helped me.  Due to the exaggerated allergic reactions that I now get to some things, and because I am sometimes allergic to tape I do not want to use the patch. 

I am also using this time to strengthen my legs for exercise. We've purchased a treadmill, just a few days ago, and have it up and I've used it two days.  The first day wasn't bad, but it took a bit to get myself on it today, as my legs are so weak that even starting very slowly as the doctor suggested it was quite painful today.  I did manage to do it, and at the same speed.

My goal is to get myself used to this before I stop smoking, so that when I do I can kick it up to help counteract the change in metabolism that you body goes through when you quit smoking. I know from experience that if I can exercise it will help prevent so much weight gain, and it will also remedy the condition in my feet, so it's important to begin with this now, and work up to where I can use it to significantly help by the time I quit in two weeks.

I want to give myself every chance I can to be successful at this, and to put everything I can to help with this, in place.  That is the reason for setting a date a month away, and working toward a goal.  I function better that way, and achieve results better when I do things that way.

I plan on drinking lots of juices at first, to flush the nicotine from my system, and will plan on a project that will consume my mind, and all my strength and physical energy for those first few days, along with being a good outlet for any frustration I feel. I think a plan to completely re-organize a room is in order, and I have a couple of them that will work for that, so I can either take my choice, or if needed, tackle them one after another, so that by the time I quit at night I can shower and fall into bed exhausted and sleep well.

Now, if any of you have suggestions you can add to this, please send them, I'm open to all suggestions that might make it easier, other than, as I said, injecting more nicotine into my body, or using the patches.  My body has had quite enough chemicals, thank you.

My daughter-in-law Robyn has chosen to join me, and will be quitting on that date also.  And, I am working on Jim. I hope and pray that he will choose to join us in this - I know that at heart he wants to, so prayers for him will help, also.

I know I told you all, but some may have forgotten that I was trying to get approved for assistance with another new cancer drug for my kind of cancer.  That approval came this week, and I was approved to receive it (from the drug co.) at no cost. This medication costs $2300 a month, for 30 pills, normally.  However, I happen to be one of the candidates ideal for their purposes, so for some like this they are making it possible to take it, where normally I would be unable to afford it. The medication arrived yesterday, and I'm only waiting for my oncologist (Dr. Boone) to return from a short vacation next Tuesday, to get the dosage he wants me to start at.  When we talked last he said we'd start it very slow, and then add in strength until it began to be a problem.  This has the same symptoms as the last one, severe rashes, severe diarrhea, so I'm in for more of the same if it works well, as the other did.  This is supposed to be very similar, but to have smaller dosages to start with, so that your tolerance can be reached without going over, more easily.  We'll see.  He seems to think it is just a matter of time before the cancer strikes again somewhere, and we must be ready for it when it does, with this medication, which is my only option left.

I hope everyone is having a nice spring.  We descended back into winter this past week, and had snow almost all week long, after having rain for several days.  Today is the first day we've had a lot of sun, although we've had enough most days to melt most of what snow has fallen.  It is now gone again, and I hope our lovely spring weather will come back.

I will do another update-a short addition to this page on the 15th, and then will try to do a short update at least weekly for awhile.

My best wishes to all,

Marcie
April 2, 2005

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Hi All,

I am a bit late with this update, and it is going to be short, but I wanted to let everyone know what is going on.

I did not quit smoking, for one thing. I have had to postpone that, due to side-effects from taking the Tarceva.  I began taking it 16 days ago, and by the third day I was getting side effects.  I went back to see the doctor two days ago, and he reports that the side effects are cumulative, meaning that the more you take, and the longer you take it, the worse they get. I found that to be true. 

And, we discovered that some problems I had the first time (with Iressa) that I thought were unrelated, were caused by Iressa, because I am suffering the same effects this time.  There are several problems that work together to make things pretty yucky.

First in yuckiness, is the diarrhea.  It hit in 3 days, and is so severe you don't dare be more than one room away from the bathroom. Immodium helps, but it makes me sleep a lot.  It takes two doses to stop the diarrhea, and then it takes 3 days to sleep it off, and on the third day the diarrhea is back and I have to take it again.

Second, the rash, and related problems.  The rash is an allergic reaction, and what I thought was an unrelated problem with my head allergies previously came back in full force with this. The doctor says it is triggered by the Tarceva.  The rash itself started at my head, with breaking out in red bumps from the top of my head, most of the lower half of my face, and down my front to beneath my breasts, where it has caused a yeast infection to break out, also a repeat of when I took Iressa.  The doctor says it looks like about 60% Tarceva, and 40% yeast.  In addition, the allergic reaction has caused my sinuses to fill to where I have constant drainage down the back of my throat to the point that it makes me very nauseous, and causes me to vomit fairly regularly.  The Tarceva leaves a terrible taste in the mouth, compounding this, and my sense of taste is again way off, causing me to lose my appetite.  The only things that taste halfway right are some very sweet things, such as some Ghirardelli mint candies. Of course, I can't eat many of these, so that's not really a good option.

These things have been enough to keep me curled up into a little ball on the couch for most of the past week or more.  In addition I have headaches from the congestion, my eyes are bothering me (a common side effect), and I am really struggling to keep up with my work on the treadmill.  I have managed to keep it up in some fashion, although some days I've been unable to manage it, and on others my time is reduced because the jiggling from walking makes me very ill.  

It would be impossible to quit smoking when I am unable to keep myself busy, so I've put a short delay on that, and have cut back.  I hope to be able to follow through in a week or two, but that will depend on how well I feel with the changes we're trying in the Tarceva.

Instead of taking one every day, I am to take one a day for three days, and then skip a day. He thinks that will break the cumulative effect enough that it will help a lot with the side effects, so it is something we'll just have to try and see.  He said I would feel good the day after I missed the pill, and that was today, and I did feel good.  My nausea is coming back now (it is about 3:30 pm), but I have been free of it all day, and I felt good until now.

So, that is where we are at.  I will try to update this again in a week.

Marcie
April 21, 2005

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Hi,

I am late again with this update, but I do have some news now.  As of this morning I have stopped (temporarily, at least) taking Tarceva.

I have been tracking, as closely as possible, my reactions to the medication, and what it does, as the doctor wants this information.  My last appointment with Dr. Boone was on April 19, when he cut my dosage from one a day to one a day for three days, then one day off the pill, and three days back on, etc.

In order to keep all that straight I marked up a large calendar with my on/off days.  Then, I goofed immediately.  I took the day I had seen him, the 19^th, as my off day, eager to get some relief for my worsening side effects, and I completely forgot to take it the next morning!  So I was actually “off” for two days there.

The first week after that, my symptoms appeared to be better in some ways, with the rash not spreading so badly, and the nausea and diarrhea letting up a little.  However, by the second week it seemed to have “adjusted” to the schedule, and with renewed vigor my symptoms rapidly became worse.  That was the week of the 24^th to the 30^th.  I spent at least half the days of that week huddled on the couch due to worsening side effects.  Then, as I went into the third week the medication again worsened, and in two days the rash which was spreading, but in small patches, suddenly turned very ugly.  Behind both knees it turned deep red with solid rash, and spread both up and down my legs from there, in huge patches that burn, even when nothing is touching the skin, and worsens if something is.  The nausea, vomiting and diarrhea worsened with renewed vigor, and resisting the medication so that it too made me more ill.

Dr. Boone has been gone on vacation since I saw him, only returning this week, and I gave him a couple of days to catch up and called yesterday.  They said they didn’t know if he’d be able to get back to me today.  He does not work Fridays, so that left it to Monday, so they set up an appointment to see him on Monday afternoon.

Given the speed with which the side effects are worsening right now, Jim and I decided that I needed to suspend taking them until I see Dr. Boone and can discuss it with him.

I have not been quite as ill today, and have been able to get some rest this afternoon, so I should start improving right away, as far as the nausea and vomiting go, but the rash, if it is anything like Iressa, will take a long time.  I still had scars from the Iressa rash when I began taking the Tarceva.

Meanwhile, I am going to take advantage of this respite, since I don’t know how long it will last, and get just as much done as possible.  It’s been very frustrating for me to be unable to do anything, with spring passing before my windows.  I will try to make good use of it.

After I see Dr. Boone again I’ll post another update.

 Marcie
May 5, 2005

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