UPDATE: Much better now

I called my surgeon's office and alerted them about the fact that the chest tumor is bleeding, so I went in to the lab and had blood drawn - and a "type and cross", which needs to be done if you need a transfusion. They double-check your blood type and other antibodies so they can match your blood type to their available blood. So, now I feel better that if I need blood during surgery, they have the necessary information to do so.

I also had a long conversation with the pre-op nurse today and asked about how to clean with Hibiclens. I feel more prepared now about what to do prior to surgery on Thursday.

I also talked to a nurse at my oncologist's office about the diarrhea since it was worse today and extended into the afternoon. I am now taking Imodium and am on a diet that is only easily digestible foods - no fresh fruit and veggies, etc.

I saw the physical therapist, too, today. My arm is about the same as it was the day after I started the compression wrap. I have a couple new strategies for wrapping. She did note, however, that the area at the top and under the arm (nearest the armpit) was 2cm bigger and seemed warm. That indicates inflammation, which might either be my immune system fighting an infection - or like the "inflammatory flare" I had after the Herminator cell infusion last year. She did say that if it was an infection there, I'd feel more pain, which I don't. So, we're just going to watch it.

I should also note that the area around the chest tumor is more red - and some spots are darker. The physical therapist also saw that it seemed redder. So, there might be inflammation there as well. I noted that it also seems bigger so I tend to think it's acting like the left armpit, which became more inflamed after the Herminator infusion.

I think both signs of inflammation are my body's attempt to fight the cancer with whatever Herminator cells I might have. I think the Tykerb is causing the inflammation. And, that's a good thing. I guess I think that it's my immune system fighting the cancer rather than a bacterial infection because I don't have a fever or feel otherwise sick.

I am feeling very tired even though I got about 7 hours sleep. Probably a combination of lack of sleep over the past week in combination with the diarrhea - lots of diarrhea can lead to fatigue.

I am drinking lots of fluids, though. I don't want to get dehydrated on top of everything else!

One of my grad research assistants stopped by today and brought lunch. We thought we might go out to lunch but with my reluctance to go out in public, she agreed to come over. I gave her some work to do for me.

I made my phone calls except that I couldn't get through to the disability insurance company "We apologize for the wait. We are currently experiencing a high volume of calls." blah blah blah. I was on hold with them twice for 15-20 min before I gave up.

I am hoping I get a good night's sleep tonight and that the Imodium helps because I really want to take Eddie and his cousin to a water park that just opened up north of here. I think it's important to take him out and about. My brother will go with me to help drive and to go into the water with the kids as I am unable to because of the wounds.

I feel much better now. Did things to relieve my anxiety and worry; I have my grad student working on some stuff for me (Thanks, R.!); am doing something about the diarrhea. Thank you for letting me complain. I feel better now then I did. And, thanks, R., for bringing lunch by!

Conversation with one of the UW docs

I had a nice long conversation yesterday with one of the doctors from UW.  I'll spare you the details - in terms of the biology because I'm not sure I quite understand it very well.  In the end, the increased pain was probably due to what she called (I think) an inflammatory flare, an intense inflammatory response.  The lymph nodes are surrounded by capsules, which are covered in nerves.  The t-cells get into the lymph nodes.  The t-cells then get into the capsules and become inflamed, causing me to feel pain.

Now, Herceptin, since it is a monoclonal antibody, sorts acts like a catalyst to the t-cells (presenting antegens, or cells that present for antigens?).  The Herceptin supercharges the t-cells, intensifying the inflammatory response and hence, more pain.

In addition, the increased pain was probably caused by air travel.  So, until the inflammation goes down and the lymph nodes shrink, I don't think I'll fly.


So, now that we know what causes the pain, I know what to avoid.  I will stay off Herceptin, for now, and not travel. 

In addition, the doctor, Dr. D., said that what they are seeing clinically is that the effect of the t-cell infusions don't really kick in for 6-10 months.  She reported that the patients in the trial (and in a previous trial) went back on a standard treatment after their participation in the trial ended, but then, all of a sudden, the treatment they get begins working very very well - in that 6-10 month period. 

Good news - but now I can expect that my treatments will really become effective around the holidays or sometime into the spring. 

In the meantime, what treatment will I get?  Dr. D. and Dr. K. are discussing it sometime today and they will let me know.  I may be eligible for another trial that they are running at UW, but I'll discuss it all in a future post! 

Also, Dr. D. said I could take Ibuprofen for 48-72 hours to try to decrease the inflammation, and hence the pain.  Yay!

Man, I'm so glad to get a good explanation for what's going on!