asking for updates!

[Velcrocat]

I took this from the ADBB journal I have there, I really think I need to start my own journal here, just not sure where to put it.


Relatively quiet day, did some paper work which was needed to be done for Gene testing. I got that sent off. While getting the information I needed to fill out the paper work I saw part of the radiologist report for the x-rays I had last week. They are recommending a thoracic CT scan which is pretty much what I expected. I won't know for sure what the plan is until I see the DR next week. So right now I am not saying anything to anyone about what I saw. I know I have written it here but I did need to get it out where I can look at it so to speak. The CT doesn't scare me but the possible results do.

As we all know we are the ones who are most aware of what it happening inside our own bodies, so when something is not working correctly or behaving properly we are the ones who know it. Sometimes there will be things happening which we are not aware of that take us by surprise but most of the time we know when things are out of alignment. That is how I feel right now with the pain in the rib. In fact I have had various pains in my chest and ribs for over six months. The chest pain turned out to be strained joints between the sternum and the ribs but this is different. I know I keep going on about it.


Working again tonight and today I will get my new schedule for the next two weeks. My boss called yesterday wanting to know if I wanted less hours or to be removed from the supervisor position. I told her no to both those things. Let me work it helps keep my mind off the things which are happening medically. I know to read what I wrote earlier you would wonder but it really does.

[Velcrocat]

Newest News:

The Good: no need for radiation treatment right now. This means I can stay in my home town.

The Bad: medication has changed from Arimidex to Aromasain and from Clodronate daily to Pamidronate monthly (IV infusion). Yea, no more having to wait after taking meds to eat.

The Ugly: there is some progression just not enough to bring out the big guns yet. This was not what I wanted to hear but much better than what I was expecting to hear. Will try the new meds and see what happens.


CT results were not ready today so will get the full report on the 4th of May. In the meantime I am rejoicing in what I have and thanking God for His faithfulness.

Not too much I can add except that some of what was seen on the x-rays and scans were from old mets and not current. But because they didn't have anything to compare with it was not clear what they were looking at. Pain management may well be an anti-imflammatory (naproxen) and a stomach protector (pariet). Will know more about that option when I talk with my Dr on the 4th of May. In the mean time I will continue what I am doing.

I don't know yet when the first IV treatment will be but am prepared for tha time in the chair.

[Velcrocat]

Today I saw the Dr and she tells me there is some chest activity. Why did I have to see three different Dr.s before I am told this. Naproxen (NSAID) and Pariet (Acid reducer)have been prescribed for pain management. I am not sure this is such a good combination because of gut problems I have had previously when taking advil/motrin/ibuprofen. I am now required to go for monthly blood tests, before the iv infusion of the new bisphosphonate (Aredia). I am so angry right now because I knew something was happening with my sternum/chest last August only nothing showed on tests. I now need to go for yet another CT, only this time it is a liver CT because of tenderness and possible enlargement. The liver function tests I had in March were high normal but now I don't know what is going on. To be honest I am scared that things are changing way too fast. God help me I am scared. Please pray for me. Tomorrow is the first infusion.

It seems I keep posting the same thing on different posts/boards.

[Velcrocat]

I have the date and time for the liver CT, it is Monday at 11:00 PDT. I get to drink some stuff so my liver glows or at least anything that shouldn't be there glows. I think I will try to find out more about this stuff I have to drink.

[Velcrocat]

Liver CT is done, preliminary results are in. This not what I wanted to hear and definitely not good news. I guess the "free ride" is over. It would appear there is some liver involvement. So right now I want to go hide somewhere and cry but instead I will suck it up buttercup and go to work, putting on a brave face. Hopefully not too many people will ask how I am today.

We are going to go with just the aromasin and aredia for the time being to see if this will halt the progression. If not then we will be talking about me getting chemo or doing something different.

God, how I hate being sick, I won't be saying anything to my children until I get the official report because I know they will be freaking out, especially one daughter, she wants us to move closer to her and I know she would if she could come up right away and pack us up and move us without considering our feelings. How do I tell them it is worse this time than before? I haven't even told them about this latest test because I didn't want to worry them.

[Jo]

lana, i'm glad for the update but feel so badly for you right now.

i do not know what to say other than you continue to be in my prayers.

can the damage that has been done to the liver be reversed?

[Velcrocat]

Don't know the full extent of the liver involvement, it may be early and reversible. That is somethingwill be talking with my Dr about next time see her. AS for your prayers and support they are greatly appreciated. When I know more I will be sure to post it.

[Velcrocat]

The results are in and not good. I seems I have extensive liver mets. We are looking at chemo. I will know more when I see the head of the oncology department. We are trying to get that appointment as soon as possible, maybe even next week. I want to start treatment as soon as possible. I don't want to delay at all. The sooner treatment begins the better.

I asked about liver biopsy but with so many mets (too many to count) there doesn't seem to be any point.

I asked about a PET scan, that is an out of pocket expense and means travel to the US. Not an option for me.

I asked about surgery but with so many mets, how can we be sure to get them all and still leave me with a liver?

I did tell her the nausea has been ongoing since I started the aromasin. It gets no better nor worse, just stays the same, there all the time.

Radiation for bone mets is an option but will wait on that until I know what else I am facing. I may be able to do that after chemo.

The hydromorph contin is back in place with a dose right now of 9mg twice a day, along with maxeran to control the nausea. If the maxeran doesn't work I am looking at taking zofran long term.

All I can say right now is I am angry and saddened by what I learned today. I will be talking with my SIL and letting her know what is happening. My children will not be told until I know what the treatment plan is. Until then I will keep things pretty close to my heart.

Thanks for all your prayers and support. Love Lana.

[Velcrocat]

It looks like I will be taking xeloda for 2 weeks on and one week off. Now to figure out the side effects and what to do for them. I understand mouth sores, diarrhea, and hand and foot syndrome are the major one.

Any others I should be aware of?
I will be getting blood work done tomorrow and the onc wants tumour markers to monitor the progress on the liver mets, getting smaller or larger. He said the liver pain I have had for the past few days is good pain (if you can call pain good) because it means the cells in the liver mets are dying and therefore causing an inflammatory response and the liver capsule is reacting to the inflammation.

[Velcrocat]

So far no major side effects. At least not the ones I was warned about. While it has been some time since I have been here. I have had some interesting developments. My blood pressure is now hovering around 85-90/60. This means I definitely take it easy standing up. I don't know why the BP is down.

I have some swelling in the right lower leg which cannot be explained. The DR has tested twice for DVT (blood clots) but both times the tests came back clear. Therefore we still don't know why the swelling. I think it may be a side effect of either the chemo or the hormone blocker.

I am trying to get into see both a massage therapist and Occupational therapy(OT) to get some kind of support stockings to try to bring the swelling down. At this point I'll try just about anything. I have had to take medical leave from my job because of the swelling. Elevating the leg doesn't really make any difference.

Too many unknowns in my life right now.

Mind you I am not having any real reactions to the chemo (Xeloda) or the bisphosphonate (Aredia), which is a good thing.

All that to say I am still hanging in there no matter what.