Snoopy's Updates

Erika's four-year ongoing battle with non-Hodgkin's and Hodgkin's Lymphoma after an autologous BMT and non-myeloblative allogeneic BMT.

Friday, September 29, 2006

Another Day at Stanford

I was doing good earlier in the week after my first dose of Velban, until things started going downhill Wednesday afternoon. It all started with a sore throat and mouth sores (which are partly due to the chemo), then followed by a severe cough, runny nose, fevers (even w/prednisone), achyness, etc. I managed to make it through work on Wednesday, but my Thursday morning, Chris had to come pick me up because I was feeling so lousy. I spent most of Thursday in bed coughing up a storm and then had a miserable night of more coughing. This morning I called Stanford and they had me go in.

I had my counts checked and a chest x-ray. The fellow "on-call" came to see me and gave me a little scare when he said there was a new area in my lung. He said he was going to call my doctor and talk to the radiologist. A while later, he came back with my doctor, which I was very relieved to see. She of course went over the x-ray with the radiologist and the "new area" turned out to be the new mass that was biopsied and is Hodgkin's. I guess they were comparing it to my last chest x-ray and since the mass wasn't there at the time they thought it was something new that we didn't know about.

After going over my symptoms and evaluating the x-ray, my doctor believes I have a mild case of bronchitis along with some type of sinus infection. She prescribed some antibiotics, cough syrup with codeine, a humidifer to sleep next to, and lots of rest. Fortunately she will be the "on-call" doctor this weekend so if I get worse at least I know I'll be in good hands!

All these little obstacles that I've had to face the last month or so have made it really difficult to work. Fortunately, I work for some of the best people I've ever known that are very caring and understanding. The days that I'm out of the office sick I still manage to put in my hours by working from home. I'm so fortunate to be able to have that option.

Monday, September 25, 2006

Got Chemo

I finally got my dose of Velban today. I was scheduled to receive it on Friday, but when I went in there was a huge uproar from the pharmacy about my counts being too low. My NP and doctor had told me that my counts from last time were good enough to get treatment, but for some reason when I showed up the pharmacy disagreed. Since my NP and doctor were already gone for the day (it was after 6pm), they couldn't get in contact with them and the doctor "on-call" wouldn't sign off on the orders. I was really hoping to get my treatment on Friday so I would have the weekend to recover from any side effects.

Today I had my labs drawn again and my platelets were slightly higher so my doctor gave me the go ahead. I got my treatment and so far I'm feeling okay. I hope the night remains the same so I can go to work tomorrow.

I discussed a lot of things with my doctor when I saw her today since this is the first time I had seen her since she told me the results of my lung biopsy and since I had my PET/CT done. We went over the PET/CT results in detail. She told me exactly what my NP had to me over the phone, so I was glad to not hear any new surprises. She said that the decision to put me back on Velban was a very complicated one and that it was discussed by many of the Lymphoma specializing oncologists at Stanford, including the highly acclaimed expert, Dr. Rosenberg. They decided to do chemo over radiating the nodule just to cover anything else that might be hiding around that may not be big enough to show up on the PET/CT. I was also put back on prednisone (my favorite) to help with the symptoms (fevers, night sweats, bone pain, etc.). Even though the dose is very small, the thought of being on prednisone again is quite dissapointing.

Another factor we discussed is the removal of my Hickman. I was actually the one who brought it up this time. I have started to see a trend in getting very high fevers/chills whenever my Hickman is accessed, so I'm starting to agree with the fact that it may be infected even though all the cultures have shown otherwise (it's possible to have an infection with negative cultures). Of course my NP and doctor agreed that this was the best thing to do (they've been practically begging me for a year). I will be scheduling an appointment with the surgeon that inserted it both times (for my 1st & 2nd transplants) to talk about removing it and other options. My hope is to have another Hickman put in, but I may possibly consider a port also. I will most likely have to have the Hickman I have now removed first, wait a couple of weeks for the infection to clear out of my system, and then have the next thing put in. That will mean two surgeries, which I definitely won't be looking forward to. I definitely need to have some type of catheter inserted, because this chemo cannot be given through a peripheral IV. Once or twice is okay, but they won't do it more than that (due to the risk of killing the surrounding tissue).

My next visit to Stanford will be in two weeks to get my next round of treatment. Meanwhile I'll be doing Neupogen shots for the next 5 days to try and keep my white count from dropping too low. Fortunately my dad comes home tomorrow, just in time for the first one!

Thursday, September 21, 2006

Treatment Plans

The last few days I've been feeling pretty awful. My fevers have been high again and I've been taking Tylenol/Advil every 4-6 hours. At night I'm usually up battling chills from the fevers, drenching night sweats, or bone pain. Monday night I woke up with extreme pain in my left shoulder. The pain gradually got better throughout the day on Tuesday, but I started developing pain all throughout my joints/bones. It's hard to tell if the pain has gotten any better since it's been masked with all the Tylenol/Advil I've been taking. The most difficult part has been going to work with few hours of sleep and feeling so miserable.

All these symptoms made me more anxious to get the PET/CT done right away so I could start some type of treatment. I was able to get my appointment with my oncologist moved to next Monday to get the results, however yesterday I was feeling so awful that I decided to call my NP to give her an update. I was surprised to hear her say that she would call my doctor immediately and that the best thing was probably for me to start treatment as soon as possible due to all the symptoms I have been having. This made me wonder if they knew something about my PET/CT results. She promised to call me back later that afternoon, but unfortunately I missed her call.

This morning I had an e-mail from my oncologist when I got to work. She said that she had talked to my NP and therefore had the reading of my PET/CT results expedited. The scan showed that my disease is only PET active in the new lung mass that was biopsied. I talked to my NP later in the day and she read the preliminary radiology report to me. They concluded that my liver mass was no longer visible on the CT, the mediastinal mass didn't light up on the PET, there was a small growth on one area of my chest (which didn't light up on the PET), but it's an area that was directly hit with radiation so they're thinking it's scar tissue, and the only area of activity was the new lung nodule.

Because the nodule in my lung is Hodgkin's just like what was found in my liver, my oncologist (along with some guidance from other Lymphoma experts) decided that it was best that I go back on velban (vinblastine). This is the chemo that I had prior to having my latest radiation treatment. The mass in my liver responded very well to this drug and so they hope that it will be the same case for my lung. The reason I had been taken off of that drug is because my mediastinal mass had started growing again. Now that that seems to be under control, I can go back on it again. I will start my first treatment tomorrow (they don't want to wait a day longer) and will be receiving it every other week. Because this drug really affected my white blood count last time, I will be getting Neupogen shots on a daily basis for 7 days after treatment. That will definitely be a challenge since my dad is only here every two weeks and he's my "shot giver." Chris isn't looking forward to taking on the new role.

Tuesday, September 19, 2006

PET/CT

After many frustrating calls to the nuclear medicine scheduling department, I finally got my PET/CT scheduled for today. Someone had cancelled their appointment, so they were able to get me in at noon. No IV's were needed, they were able to use my Hickman to test my blood and inject the sugar dye. I slept through the entire two hours of the procedure which was nice.

I have an appointment scheduled with my oncologist for next Wendesday, however I'm going to try to move it up to Monday since I was able to get my PET done earlier than planned. Hopefully by then I will have a better idea of possible treatment options.

Wednesday, September 13, 2006

The Return of Hodgkin's

Another day of bad news although I was already anticipating it so it wasn't so difficult to hear. My oncologist received the results of my lung biopsy and it turns out the node in my lung is Hodgkin's (the same kind that was found in my liver over a year ago). It was quite a surprise to her as well as myself. We thought that if it was going to be disease, it was going to be Non-Hodgkin's since the area is so close to my mediastinal mass which has always supposidely been Non-Hodgkin's. Now I'm having doubts however. I really wonder if I was mis-diagnosed from the very beginning. I guess we will never know. I am considering asking my doctor about possibly biopsing the original mediastinal mass if it's not a very invasive procedure. This was never done in the past, because they said they would have to deflate a lung and break some ribs to get to the area. If it's as simple as the lung biopsy I had done I would be willing to do the procedure to get a real answer as to what the mediastinal mass really is.

Because these results were quite unexpected, my oncologist had no treatment plan in mind. She wants to go back to the "drawing board" and see what options might be available. She's looking into chemo, clinical trials, and possibly radiation again. Because I haven't had radiation to this area of my lung, it's still a possibility. Meanwhile, I'll be having a PET/CT done in the next week to make sure there's no disease lingering about somewhere else that hasn't been showing up in the past few CT's.

I also had an echo done this afternoon since my pulse has been high and I have still been running fevers on a daily basis. The echo was normal. We're going to keep an eye on my pulse and if it doesn't improve in the next two weeks, I may have to see a cardiologist.

The timing of bad news is never good, but this time it was a little tougher, because Chris and I had been planning a trip to Japan for the first week in October. We had everything set and were going to book it tonight or tomorrow after getting the okay from my doctor, but she of course felt it wasn't a good idea at this time. I agree with her decision and I know I will have the opportunity to go to Japan again soon. For now I need to preserve my energy for fighting my ongoing battle...

Wednesday, September 06, 2006

Still No Results

I had two appointments today, first with a periodontist, then with my oncologist. The periodontist appointment seemed like a waste of time and money. I had scheduled to go in, because I have some very recessed gums that are causing me some pain. I wanted to have them looked at and possibly have them treated before they get worse. The doctor told me that my case was a "no brainer" and that I would need to have some "grafts" done. This is definitely not what I wanted to hear. Fortunately, due to my chemo treatment I'm not able to have these procedures done. There is too much risk for infection and bleeding. I guess I'll just have to put up with the pain when I brush my teeth.

I was feeling very tired for my oncologist appointment and I was running a fever so I actually fell asleep on the exam table until my NP and doctor came in to see me. I had prepared myself as much as possible for bad news. Instead, I received no news about my lung biopsy. It turns out that nothing has grown from the specimen that was taken and pathology has not been able to determine a diagnosis. My doctor explained to me that it could take weeks for fungus to grow and that could be one reason for having no results. Meanwhile, my chemo treatment has been put on hold until we have further news. I will be seeing one of the infectious disease doctor's on Friday and then will follow up again with my oncologist next Wednesday.

Because I have a pretty bad cough, they think I may also have some type of viral infection going on. To rule out anything serious, I'll be having an echo of my heart in the coming week.

Friday, September 01, 2006

Back Home With No Results

After what seemed like an eternal wait, I finally had my biopsy done yesterday afternoon. Prior to that however, I had an unexpected mini-procedure done on my toe. It turns out that I also had an infected in-grown toe nail which they had to remove. Fortunately, that was very minor and prepared me for the bigger procedure coming up in the day.

I got wheeled into the Intravenous CT room around 4pm where they gave me a transfusion of platelet's, prepared me for the procedure, and went ahead with it. I had three lovely nurses who were beyond great (one of them was there for my liver biopsy) and I had no problem talking them into sedating me. I received a cocktail of versed and fentanyl, which I tolerated very well. I do remember the whole procedure and talking through it with the doctors. At one point, I think I may have even wanted to participate because the nurse came rushing to me and had my arm velcroed down. I clearly remember my eyes going from the needle in front of me, to the table where the specimens were being taken to, to the computer with the picture of the area they were biopsing.

I had been told earlier in the day by the Oncology team of doctors that they would most likely have some preliminary results of the biopsy by Friday morning. They also started hinting to me that they felt that this was more likely going to be tumor rather than infection. Throughout the night I lay in bed preparing myself for the bad news, it's never easy.

Friday morning anytime someone walked by or knocked on the door I practically jumped out of my skin. The Oncology team finally came by after 9am and said there were no preliminary results back and that I would be discharged and would need to follow up with my oncologist and infectious disease doctor next week. So for now I'm back at home with fevers, a few more holes, and an appointment that I'm definitely not looking forward to.