Erika's Treatment Update -- Week 54

Today was a pretty typical day at Stanford. I went in for labs, to see my oncologist, and then had chemo. My labs looked pretty good, most of my counts were in normal range except for some of my chemistry panel numbers and my LDH. Both my nurse practioner and oncologist felt that this was due to the amount of exercise I've been doing. They think I may not be getting enough fluids and electrolytes causing some of those numbers to be off. The plan is to do chemo every other week now, using 5 days of Neupogen shots following chemo to keep my white blood count up. Next time I go in I'll have a chest x-ray done again and then the following time I will have a full body CT scan to see more detail of my prognosis and response to Velban.

I was informed to continue on the 20mg of prednisone for about another month. I'm still only getting about 2-3 hours of sleep at night so I'm hoping that they will taper me sooner than that. Regardless of the lack of sleep, I still have been pretty good with energy to go out and do a daily walk. Sometimes I go out in the morning and then again in the evening when Chris gets back from work. Our training has been going pretty well and we're hoping to be able to do the 1/2 marathon Jungle Walk/Run coming up in Los Gatos on July 10th. As usual, we're just going to play it by ear and register at the last minute if I feel up to doing it.

That's all the news for this week, it's been a pretty uneventful one (which is always a good thing). Hope you all have a great 4th of July weekend!!

Erika's Treatment Update -- Week 53

Today was a very long day at Stanford. My oncologist was running about two hours late so I spent a lot of time waiting by myself. After much discussion, it was decided that I wouldn't get chemo today. My counts were actually good (the Neupogen and Procrit did their thing), but we're back to constipation problems which are now delaying my chemo. I'm still taking daily laxatives, but the chemo is just too strong and they're not working properly. I'm increasing the dose today to hopefully get back to normal again. My oncolgist was concerned because she has another patient on the same chemo with the same problems who had to have surgery last week because it got out of control. She doesn't want me to get to that stage so unfortunately we're going to have to do my chemo every other week now instead of every week. I'm upset that this is delaying my chemo, but I can understand their concern. I'll be back in next Wednesday for chemo.

I also saw my BMT doctor today for my skin/mouth GVHD. He was very happy with the way things are looking the way my skin is healing. He said I will probably have some discoloration/scarring for a long time and the only way to eliminate that getting worse is to avoid sun exposure altogether. With the hot weather that's pretty much impossible, the best I can do is cover up as much as possible and use the highest sunscreen available (which I've been doing). He did say that I can have a re-occurence of this at any time, especially with sun exposure so I'm going to continue on prednisone and the oral steroids for now.

As far as how I've been feeling...I've actually been very high in energy considering I'm only averaging about 2-3 hours of sleep a night. Chris and I have been walking almost 7 days a week in the evenings and I've also been doing some walking on my own during the days. We're really hoping that we will be able to train with the TNT Fall season for the Nike marathon. No promises, we're just going to play it by ear and see how things go. I'm sure the Procrit shots and prednisone are what is giving me the extra boost of energy. The only drawback to all the exercise is I'm losing more weight which my doctor's are definitely not happy about. They both mentioned today that if this continues, they will not allow me to continue training.

Thank you to all who have emailed me and written comments regarding book recommendations. I have put together a list of all the books so I have plenty of reading to look forward to. I just finished Bridget Jones's Diary this morning and will start reading The Curious Incident of the Dog in the Night-Time. I also have My Sister's Keeper and The Jungle (by Upton Sinclair) waiting to be read.

This past week I sent out an email asking people if they were interested in joining Chris and I for the LLS SF Giants game on August 30th. It's a 7:15pm Tuesday night game. Many people responded and said they were interested, however started purchasing tickets on their own. In order to sit together, we need a minimum of 25 people. Right now I have about 15 people and the tickets need to be purchased by the end of the month, so if you're interested please let me know ASAP so I can make the group purchase. Please email me at your earliest convenience with the amount of tickets that you're interested in purchasing. If I don't get 25 people, everyone will have to buy tickets individually through the website and we will all be sitting in different areas (which is also fine, I just thought it would be fun to all be together).

Erika's Treatment Update -- Week 52

Looks like things are moving in a positive direction this week. I'm feeling much better since I was released from the hospital. My whole stomach situation is back to normal, although I have strict orders to continue taking medications so that I don't have a re-occurence of what happened again. My nurse practitioner was telling me today that she's always having to admit people into the hospital who are on this particular chemo for the same reason so I'm definitely not alone.

My energy level has been really high the last few days. I have been getting out and doing a lot of walking in the evenings which is nice. I'm down to 20mg of prednsione which is pretty low, however I have been having some trouble sleeping at night. I'm usually up from 3am-7am, which drives me crazy. So if some of you are getting emails from me at those hours you know why.

Today I went into Stanford with plans to get chemo. My oncologist was out of town, however I met with my nurse practitioner. I barely made the cut in terms of my white count to receive chemo today (neutrophils were 1.5 which is the minimum they could be). She's pretty sure that I won't be able to receive treatment next week since this is just going to kill my counts. I'm actually going to start 5 days of Neupogen tonight (my dad will give me the shots) to help boost my white count this time around. We also discussed that I might have to just keep to an every other week schedule instead of every week like originally planned. My other counts looked great however and she agreed that my skin/mouth are healing really good. Oh and I did get a little bit of good news...I had a chest x-ray done today and it shows some significant shrinkage in my chest mass. She was very impressed considering that they can't see much on a chest x-ray compared to a CT scan. She will be talking to my doctor when she gets back on Monday to discuss doing another CT scan soon to see if the liver is also responding well. We're not sure if this response is a result of the new chemo that I have been on or from the GVHD or a combination of both. I guess we will never know, but regardless it's a GOOD thing! I guess everything I've gone though the last few weeks with the GVHD was worth it in the end if it helped out a little. I'll be back at Stanford next Wednesday again to check my counts and see how I'm doing.

This weekend I'm looking forward to some visits from friend's from down south and a Father's Day picnic that Chris and I are putting together for our families. Hopefully the weather will be nice since I know there are some showers anticipated in the next few days.

I do have a request for any of you that could help out this time...I need recommendations for any good books to read. If any of you have read any good books lately, please email me or write a comment below, I'm desperate for something good. The last book I finished was Kite Runner which I enjoyed.

Hope you all have a great Father's Day weekend!

Back home

I'm finally back home after a two-night stay at Stanford (I was discharged this afternoon). The new chemo that I have been put on has minimal side effects, except for one major one - constipation. In the past this hadn't been a problem, however since I received two doses back to back and since I hadn't been eating anything but liquids the past few weeks it finally caught up to me. When I went in for my appointment on Wednesday it had been about a week since I had a regular bowel movement and my oncologist immediately became concerned. I had been taking some milk of magnesia on a daily basis, but it didn't seem to work and so they had start taking a very strong laxative which was supposed to help out. It generally works after a couple of hours (they refer to it as "liquid dynamite"), but almost 24 hours later it still hadn't worked and I was in complete misery. My stomach was distended to the point of looking about 6-7 months pregnant and I had ongoing cramps that were intolerable. At that point my doctor felt it was best for me to be admitted so that they could give me something stronger and monitor me closely. Once I was admitted I was given some stronger laxatives which bloated me even more and made me feel awful, finally about 48 hours after the whole thing began I was able to go. Today I woke up feeling better, however my stomach is still very much bloated and distended. It will probably be a few days before everything starts working normal again. The main thing now is that I need to continue taking stuff so that it doesn't escalate to this point EVER again. I never knew not being able to use the bathroom could cause so much pain and chaos!

Prior to being discharged I had my blood drawn and my white count is still significantly low and I'm still considered neutropenic. I'm hoping that my counts will start to come up in the next day or two so that I'm able to get chemo on Wednesday as planned. If my counts do not come up, they will probably start me on some Neupogen shots to help increase it.

I'm really glad to finally be back home, the weather today was beautiful and although I didn't really get to enjoy it, I'm hoping tomorrow I'll feel well enough to get out for a little bit.

Admitted to Stanford

I was admitted yesterday afternoon to Stanford so I wasn't able to post an update earlier this week. I didn't get chemo on Wednesday as planned since my counts were too low. In fact, it turns out I'm neutrophenic right now so I'm in isolation once again. I guess getting two rounds of chemo back to back really took a toll on my body this time. I did see both my oncologist and BMT doctor on Wednesday and they both agreed that my GVHD looked much better. My skin is mostly healed and my mouth and lips are doing much better also. The plan right now is for me to get to go home tomorrow. I'll make sure to write a more detailed update once I'm back home.

Erika's Treatment Update -- Week 50

Today was another long day at Stanford. Because I didn't think my counts were going to be good enough to get chemo today, I decided to go on my own (I didn't want Chris to take the day off from work) so it turned out to be a long, boring, lonely day. My white count actually ended up being in the normal range so my oncologist decided to do treatment. I also met with my BMT doctor so he could take a look at the progress of my GVHD. He felt that my skin is healing pretty good (the spots are mostly all dried up and scabby), however my mouth and lips are not doing so well. Usually prednisone responds well to the skin, but not as well with the mouth. He suggested that I start on immunosuppressants to try to speed up the recovery, however due to the extreme side effects that I've experienced with them I convinced him not to go on them. We agreed that I would go one more week on high dose prednisone before taking that next step. He's mostly concerned because the mouth/lips haven't allowed me to eat normally and I've lost quite a bit of weight in just the last week. Next week I will be meeting with him and my oncologist once again to check how I'm progressing and for chemo.

Because I've been on the high dose prednisone, I've been having a little more energy than usual. I've been getting out almost every evening (after the sun goes down of course) for a walk and I've been doing quite a bit of cooking. I even managed to take two hours of tap class this past week instead of my usual one hour!