In 30 minutes I’ll be leaving to head up to Duke to start the SCT process. Today I’ll see the doc and have an EKG and some tests. Then I’ll go check in to the housing that’s been arranged for me. I sure wish I lived close enough to do this at home. I’ll write more as soon as I can.
This is a picture of what my skin looks like around the catheter that was placed almost two weeks ago. It’s from the adhesive pulling skin off when I change the dressing. Now I’m using a gauze dressing with paper tape. I hope it heals soon. I really do like the clear dressings better, since there’s less worry about getting it wet or allowing bacteria in. This catheter is placed under my right collarbone. There’s also a tube in my neck that I can feel. If you click on the picture, you can see a bigger version. If things like that make you at all queasy, then please don’t click on it. :)
This is all the stuff that was either being pumped into or out of my Hickman catheter. The bag of yellow stuff is platelets. The red bag contains my stem cells. There was also calcium, saline and other fluids. Normally, I’d have studied the label on every bag, but I don’t know why I didn’t do it this time.
I’m here at Duke, waiting to see if I’m ready to start apheresis today. I had my blood drawn at about 7:30. At 9:30, they’ll have some counts back. If they’re high enough, I can start. If not, I go back home and come back tomorrow. I don’t have as much bone pain this time as I did last year, but I don’t know how important that is. The nurses said, the more miserable I am, the better. Last year I had 10 days of neupogen shots. This time, I’ve had 5 days of leukine and 2 of neupogen. One of them was just at 5 AM, so it may not count.
I’ve been injecting Leukine in preparation for stem cell collection. As is usual for me, I’ve searched the web for as much information as I can find about it, and found this comment from the Non Hodgkin’s Lymphoma Cyberfamily web site to be disconcerting:
Leukine (Sargramostim) Similar to Neupogen, Leukine also stimulates the production of Neutrophils, but it goes one step further and also promotes the macrophages. Therefore it is called GM-CSF (Granuloctye Macrophage-Colony Stimulating Factor) Recent studies have shown that for the purposes collecting enough CD34+ Stem Cells for transplant, Neupogen is more effective than Leukine, and Neupogen plus Leukine offers no additional benefit, but the cost is significantly higher. For more information about Leukine click the link below: http://www.leukine.com
I plan on looking for the studies mentioned, so I can ask my doctor about the choice to use Leukine (5 days) and Neupogen (3 days).
On Thursday, when I started, I went to my local oncologist’s office, where one of the nurses showed me how to prepare the injection. Before, I had pre-filled syringes. I thought I was paying attention, but yesterday it became apparent that I hadn’t been. I remembered Andrea telling me to use a different needle to puncture the vial and withdraw the fluid, which I did. The needle is dulled when it goes through the top of the vial, so the injection hurts more. I can vouch for that. I had a heck of a time getting the Leukine into the syringe. It felt like there was a vacuum in there, and I got nothing but air. I ran over to my neighbor’s house to ask for help (she’s a nurse), but she wasn’t home. Her husband got her on the phone, and she told me to try taking the syringe out and putting it back in and injecting air into the bottle before trying to extract the med. That kind of worked. I was able to get some of the Leukine into the syringe. Some of it bubbled up out of the top of the vial. The needle wasn’t long enough to get it all out it seemed. I think it has something to do with the vacuum effect, and I just didn’t have that bit mastered. I gave myself a shot, and then managed to stab myself in the left middle finger when I was putting the cover back on the needle. I should have pushed the plunger in case there was any Lekine left in the syringe, but all I could do was swear and jerk it back. Anyway, my neighbor said she would help if I needed her. I could ask her to load the remaining 3 syringes for me. The injection part is really easy.
I saw the doctor yesterday. The chemo I had in October did nothing for me, so I need to have some more and then on to a transplant. They don’t really do many bone marrow transplants anymore. Instead, they use stem cells. It will probably be February by the time I’m admitted for my transplant. In the mean time, I’m going to try to enjoy myself as much as possible, exercise a lot more (so I can be stronger for the transplant) and do some kind of chemo, which has yet to be determined. I failed a few treatments, so there’s one choice left, pretty much (Velcade in some combo). I’m in a situation where my cancer grows whenever I’m not constantly being treated for it. Time off is great and feels wonderful, but my disease likes it too. I’m not going to lie. I worry about my dog outliving me, and what will happen to him. How can I be sure he’ll be taken care of and loved? My cat, too.
I have an appointment on December 13 to see the transplant doctor.