September 2015 Results

After 7 months of being on the same chemo my oncologist has ordered a CT or cat scan to see how well or if the chemo has been working. While on chemo we have been checking tumor markers and noting my symptoms. Neither have been one way or the other very telling. The CT scan or cat scan, was done on September 9th. I got the results the other day and they aren't the best. Not the worst, but not what I was hoping to hear. There is a pretty big tumor in my liver. Last time we looked, there was a tiny tiny spot on my liver. After months of this chemo not working, that tiny spot has grown to a tumor that has taken over what looks like a third of my liver. I haven't gotten a copy of the report yet to know the exact size of the tumor, I just remember seeing how big it was on the screen as the doctor was reviewing the results.
As always, I didn't let my mind stay on the results very long. I immediately want to know what we can do about it. There are a few things we need to know before we can select a treatment. That means we need to go in for a biopsy. The radiologist decided that the best place to biopsy is the liver, so I will go in for surgery on September 30th for that. One of the things we are looking for, is to see if any of the receptors have changed. We are also checking another part of the pathology report that has not been checked since I was first diagnosed in 2008! (Gosh that was a long time ago!) If any of those things come back in my favor, we will have some easier treatment options to chose from. Possibly even multiple treatments at the same time. So it's important to get that done. Even if there are favorable results, there are only so many chemos available to me and then there are so many that I have already done and can not do again. Once you have been on a certain chemo, you build a tolerance to it and possible others. So the ones that have worked before aren't an option now. Choosing a chemo seems to be such a big deal and only getting more difficult as there are less and less to chose from as the years of treatment have gone on. So after the biopsy results arrive, I am going to Stanford to see what treatments and chemos they recommend. While we wait for that, I started a chemo that my doctor felt would prevent things from progressing and wouldn't eliminate too many good options later. That way we are not letting the cancer grow like crazy while we wait for tests and appointments. He said it is one that will knock my hair out.
Funny how so many chemos have worked before and the one that knocked my hair out this last time is the one that hasn't been working! I said along the way that I would be mad if I lost my hair and it wasn't working. But now that I know that's exactly what happened, I don't really mind. I've never really been bothered by loosing my hair. It's always been really long when I lost it too. The first time I lost it, I thought it would be so difficult, so I cut it short before I even started chemo. I was worried I would be so upset and I was scared about chemo and not feeling well and then being even more upset. So I went from short hair to a shaved head before my first treatment. This last time I lost it, I waited for it to fall out and then I cut it short. Only because it was a pain to clean up longer hair than shorter hair. Once it really fell out and looked really bad, I shaved it. It has started growing back in. It is about an inch long and really light. There is also a ton of gray! Last time it grew back in, it was curly and really dark. There was a lot of gray then too, but there is more now!
I will post again when I have news or a funny story to share, or really any story to share! Happy Fall and thank you for all of the birthday wishes and prayers for good health! I have been feeling very loved!

Tumor Marker History

    Here are my tumor markers since April of 2014. 

                 CA15-3(0-31.3)    CEA(0-4.6)

5/13/15              28.7               3.4

3/24/15              40.3               9.5

2/6/15                36.8               7.0

1/8/15                34.8               7.4 

12/11/14            28.7               6.9

11/3/14              29                  7.4

10/16/14           30.2               7.7

8/8/14               36.9               7.1

7/24/14             40.3               7.1

6/26/14             36.9               3.7

6/3/14               33.4               3.7

5/6/14               26.8               3.1

4/8/14               27.3               2.4

Tumor Markers are not absolute proof of what the cancer is doing or if it's growing or not. It is one indicator of what could be going on. This test is used with other information to guide my treatments and decisions. 

Life on Halaven

I have been on this chemo, Halaven, for a while now, but I haven't had very many full treatments and I didn't know if it was working. A full treatment means to receive both doses one week a part. So the first dose is on a Wednesday and the second dose is on the following Wednesday. The next week is a break and I don't get any chemo while I rest up and get ready for another round to kick my butt again. For one reason or another, many of the treatments have been interrupted and so the effectiveness of this particular chemo has not been determined and since I lost my hair for it, I would like it to be highly effective! Aside from loosing my hair, it has been one of the hardest treatments I have had. My legs are weak, numb and tingly. I am nauseated most days, I have headaches, and every tastes terrible. Except Reese's Puffs Cereal! I missed treatments because my blood tests would show I wasn't healthy enough, once I had to get a blood transfusion, that worked and I haven't needed another one since! Thanks again for all of the support and blood donations!! You guys are amazing! Other times I just didn't have a tumor marker test because the new doctor that came and went didn't believe in basing treatment on markers so much so that he rarely would test them. (I never let treatment stop or slow down with him, but he did over rule my requests to test the markers. Ironic since testing was the one thing many thought he did way too much of.) Anyway, I either didn't get enough consecutive treatments to test, or I wasn't getting a test to see if this chemo was effective. After talking with Dr. Hsu, he is substituting for himself :), we made it through enough treatments and then got the tests! I was pretty nervous but cried real tears of joy when I got the results! . My CA-15-3 went from 40.3 to 28.7, normal is 0-31.1. My CEA went from 9.5 to 3.4, normal is 0-4.6. You can see I went from off the charts to "normal". So I will continue to take this chemo until I am "normal" long enough for the doctors to determine I will stay there without the treatment. Until then I will happily be bald and feel like crap.

Radiation? Check!

Today was my 10th and final day of radiation. I'm exhausted! The cancer in my bones had gone into my right shoulder and was causing a lot of pain. It was hard to unload the dishwasher or even pour a glass of tea. After about 5 sessions of radiation, I could already feel a difference. Now it feels better than I can remember. My dad drove me to all of my appointments and I loved speeding the time with him. At first I thought I would just drive myself, but I'm glad he took me. There were so many days that I was too tired to drive. That's one thing about radiation, you might see positive results quickly, but it makes you tired just as fast. There have been a number of days that I took a nap for 6-7 hours. My brain is like mud. It's hard to concentrate on reading, even texts! But it's all up from here! I've finished my last session and will continue to feel better and will hopefully be able to stay awake longer than a newborn baby.

My First Blood Transfusion

Lately it seems that something has always come up to pause the chemo treatments, I need these treatments and want to get this new chemo started and at least make it worth loosing my hair! So this week I was finally able to get both rounds, making this my first full chemo treatment in about 5 to 6 weeks. While my white blood cells drop frequently and a simple shot will boost them, my reds have always remained borderline healthy. Until now. I was still able to get treatment but they sent me in for a blood transfusion as soon as the infusion center could get me in. I didn't know what  to expect. In fact I didn't even know they let me keep my old blood. I thought they swapped it all out. Thankfully they do not, they just add a few pints to your existing blood. In my case they only added red blood cells. Not iron, or platelets or anything fancy, just red blood cells. I needed 2 bags and they said to plan on staying there for 2 hours per bag. I packed a backpack full of books, notebooks for list making and doodeling, and apple gadgets with accessories to get me though 4 hours of just sitting. The first thing they did when I got there was give me a Benadryl, negating all of my packing and any need to do anything that requires opening my eyes and thinking at the same time. I don't remember much. My dad took me and stayed with me most of the time, and Tony stopped by when he got out of work. I know my dad left for a walk, or at least he claims to have taken a walk, I don't recall him being anywhere expect for the chair next to my bed. When it was over, (in only 3 hours!) one of the nurses fixed my port! For the past month or so my port has only been working one way. Thankfully it was taking fluids but it would not draw (give) fluids, i.e. blood. So every visit to the cancer center lately has been a chemo push in my port and a blood draw from my arm. They have to draw a lot and often, which is why I got the port in the first place. My chemo nurse spent so much time trying to fix it and pushing fluids to de-clog whatever was stuck in it. When I checked in today they said they would fix it before I left, I tried to not get my hopes up just in case, but she was able to fix it!! I love it!!! When she was done she mentioned I got my color back, she wasn't joking! I didn't realize how pale I had been looking. When I went to look in the mirror, my foundation looked like a white clown face! My entire body is warm and pink again! I didn't realize how bad it was until they fixed it! I hope I won't have to do transfusions often, but at least I had a positive experience and if I do need more, I know to where better clothes for it, I wore jeans in my bed today :) I also know that I will be sleeping the majority of the time so there is no need for iPads, headphones, a list of youtube videos, 2 books and a notebook.
If you donate blood and don't already have someone you donate for, please consider donating in my name, Janice Bardone. I only used 2 pints today, but I know there may be a need for more in the future. And if I end up not needing it someone else will! Thank you!
And now I am going back to bed to enjoy the last remaining effects of the Benadryl.

Can't Sleep so I Guess I will Blog

I have really gotten behind on posting and sleep doesn't seem like it is going to happen so I might as well use this time wisely, and BLOG!
Last week I did have a biopsy performed. I am still waiting for the pathology report. Before you start blowing up my phone, my next appointment isn't for a few more weeks. I will find out then if the cells of my reoccurrence are the same from my original cells from my first diagnosis in 2008. If they are the same the prognosis is the same. Stage 4, metastatic breast cancer that is in my lung area, ribs, spine, hips, right shoulder (that's new this last few weeks),possibly the liver, and some other places I don't want to waste space mentioning. The prognosis is the same, chemo or some kind of treatment as long as I can handle it for the rest of my life. If by God's will, the cells are different, they could be easier to treat, they may even be a different type of cancer and I might only need  little bit of treatment and be in remission before the kids go back o school! The chances of the later being the case are slim, but it's happened before and it will happen again, why shouldn't it happen to me right now?
The biopsy was done on my right clavicle, or collar bone. It was semi painful. Sometimes it didn't hurt at all, other times I was in a lot of pain. I was sedated and the area was numbed, but I was all the way awake. I kind of liked that part, until the Dr had to jam a needle into my bone and was using so much pressure that I thought I was going to be pushed off of the CT Scan Machine. They needed to use the CT scan to guide the needle into the lesion in my bone so they would roll me into the Ct scan, line the needle in and then roll me out to jab jab jab the area until they had enough bone chips and tumor pieces to make good slides to see what the cells are. The Dr's were cool and let me see everything they had chiseled off of my collar bone. After the procedure I had very little pain and was able to go home after a short 2 hour wait with the world's dumbest nurse.
Ugh! This lady was dumb! She wouldn't stop talking to me and just let me rest. She said all kinds of dumb things that didn't have anything to do with me or the procedure. Then when she took out my IV I told her that the adhesive usually takes off the top layers of skin. She says great I'll use alcohol! I wanted to kick her! Removing the IV was the most painful part of the entire procedure. She was trying to remove the sticky part from the bandage that held the IV in place. But by rubbing alcohol on it, the new raw skin, my arm felt like it was on fire. She kept explaining why she used alcohol and I kept saying I understood, but it didn't mke it burn any less. There were so many little conversations that made me think she never even looked at my chart. Thegood news is that it is over and I will probably never ever ever see her again!
Oh and my new oncologist is no longer at the cancer center. He already left or was asked to leave. There were a lot of people that didn't really care for his way of doctoring. So now I am seeing Dr Havard and he is great!
I also was not able to get chemo this last week. My white blood cells were too low. I have now had 2 white blood cell booster shots in the past 4 days. When I go back in they should be back to normal and doing thier job of keeping me healthy enough to get chemo. I hate missing treatment. Esoecially when I feel new spots on my shoulder. I know its growing and I feel like I am not doing anything to stop the cancer from taking over my body one part at a time.
So I think that might actually be all of my news! If not I will add another post with more updates soon!

Hair Today, Bald Tomorrow

If the Title didn't give it away, I've lost my hair.  The last chemo I was taking wasn't beneficial enough to continue.  The side effects were not worth it. My skin was coming off of my hands and feet but my markers continued to increase. So we switched to a new chemo. Every time we switch medications, I run the risk of loosing my hair and experiencing a number of other side effects.  The good news is that I get to go Wig Shopping, I have a lot of supplies already, and this summer will be cool and I will have lots of hair options that won't include having to blow dry my hair when it's 100 degrees and over outside!           

So far this chemo does seem to be a little more difficult than my last one, not too much worse, but there seem to be more days that I am tired. I hope to know what days I can expect to feel well and the days I know just to take it easy are soon. It usually takes a few weeks to figure those things out. I will post some pics soon, right now I am still going through my best wigs and head coverings. Of course I will show the whole bald thing, but for now I still have some hair and it looks odd until its all gone. I see a bic in my weekend plans!

In other news..... My oncologist has retired. I really like my new dr, of course there is never replacing a dr like Dr Hsu. My new Dr, Dr Nobile, is very Italian! I love that! He seems very smart, and has done a good job taking over in the middle of a new treatment plan. The first day I met him, I had just started my new chemo, had a sinus infection, and felt worse than I had in many many months. He asked a few quick questions and I felt better within 2 days! He shares his big picture ideas and hopes with me and they line up perfectly with mine. He does want to biopsy a spot somewhere. Stanford had recommended that too, but the odds that my tumor has a new pathology was so little and a biopsy site seems too difficult to reach that Dr Hsu and I moved on from it. Now, if we can find a site that seems decent to biopsy I am all for it. This could mean a number of things. The biggest thing is that if my tumor has changed, treatment could change too. The pathology report of a tumor tells you if you need chemo and how aggressive of a chemo you need. If, by chance, the pathology comes back and my tumor has changed, there could be an easier treatment plan that will bring more benefits and less difficulties.               

There are probably some typos and some grammar errors, I will try to reread later and make it easier to read, but for now, I'm tired and I just wanted to get the info out before I start running around town bald.