Tuesday's appointment was at the University of Washington. I went to the oncology radiation department to meet the nurse and doctor. (I had no idea there was such thing as an oncology radiation specialist and that a physicist does the equation to make sure you are getting the right amount of total body irradiation.) They measured me in all kinds of spots, took chest x-rays of me in the machine, and went over all the risks and side effects from TBI. Some of the side effects are infertility, glaucoma, alopecia(hair loss), slight increased risk of skin cancer over regular populations, naseua, loss of appetite, dehydration, mucocitis, parotitis, diarrhea, and skin sensitivity. The machine that you sit in looks like a torture chamber, but the actual radiation is painless. I will be starting on July 10th and go in for 2 sessions a day for 3 days. I have to stay up near the U for the irradiation, so I will be staying at a hotel. After the 3 days in the hotel, I will be admitted to UW for the chemotherapy and transplant.
Wednesday's appointments were back at the Seattle Cancer Care Alliance. (SCCA) First, I needed to go to the lab to get a blood draw. Next, I had an appointment with my tan team nurse and physicians assistant. They took cultures to check for MRSA and Vanco-resistant cocci. Fun stuff. They also answered questions and let me know that my lumbar puncture (LP) and bone marrow biopsy both came back negative for lymphoma/leukemia. This is bittersweet. If it had been positive I would be gung-ho for a transplant. But, since it was negative, it makes me question the decision to go ahead with the transplant. They ran the biopsies through a very sensitive test and still it came back negative for any cancer. Then, I went to get another chest x-ray, so that they can make sure everything is clear in my lungs before transplant. My last appointment for the day was OB/GYN. Women, you know how that goes. But, in addition to the usual fun stuff, she went over the side effects from the OB/GYN perspective for the transplant. I will be post-menopausal after the transplant. So, I will have to take hormones. I also will be taking progesterone for the transplant so that I will not have a period, because they don't want too much blood to be lost.
Wednesday, June 30, 2010
Friday, June 25, 2010
Fridays Appointments
My first appointment today was with the Oral Health department at the SCCA. I was supposed to get a pano x-ray, but since I have had one in the last 2 years I can just have it forwarded to the SCCA. Then I filled out a dental history form and gave them my dental insurance information.
My second appointment for the day was with a transplant nurse. She explained my new medications and answered any questions that I had. She also went over my schedule for next week.
My third appointment was with the transplant Social Worker. She kind of asked the same questions the the phyciatrist asks. It felt like a therapy session.
My last appointment was a questionnaire on the computer. It is meant to help patients address issues that they are having, then the answers are printed out for your appointment so that all of your issues are addressed. They feel that people often forget to ask about their issues or don't feel comfortable asking about things. It asked everything from fatigue to pain to social activities.
I get Monday off from the SCCA.
Yesterday I got to retire 5 of my medications and today they gave me 3 new prescriptions. Figures: ) No more oral chemotherapy, so that my counts can come up. No more chemo until the high dose chemo for the transplant.
My second appointment for the day was with a transplant nurse. She explained my new medications and answered any questions that I had. She also went over my schedule for next week.
My third appointment was with the transplant Social Worker. She kind of asked the same questions the the phyciatrist asks. It felt like a therapy session.
My last appointment was a questionnaire on the computer. It is meant to help patients address issues that they are having, then the answers are printed out for your appointment so that all of your issues are addressed. They feel that people often forget to ask about their issues or don't feel comfortable asking about things. It asked everything from fatigue to pain to social activities.
I get Monday off from the SCCA.
Yesterday I got to retire 5 of my medications and today they gave me 3 new prescriptions. Figures: ) No more oral chemotherapy, so that my counts can come up. No more chemo until the high dose chemo for the transplant.
Thursday, June 24, 2010
Transplant Appointments Have Started
The next day after my last post I got a call for my nurse up at the SCCA, Toni. She asked me to come in the next day for an appointment with Dr. Shustov. This is not a good sign! Usually appointments with him are booked weeks in advance. Well, it ended up that he wanted to tell me that the transplant board had discussed my case and the consensus is that I need a full transplant. This means 3 days of full body radiation and 3 days of heavy duty chemo, leaving me with no blood cells-completely wiping out the marrow. The 8th day is the "rescue" when they infuse the donated stem cells. Then it takes 7-20 days for the new immune system to start working.
On June 21 I had my last appointment with my oncologist Dr. Shustov for the next 100 days. He again let me know that the choice is up to me and that he is leaning slightly towards the stem cell transplant. I can stay on the maintenance therapy for 2 years and worry about the 65-75% chance that the leukemia will come back. If it does relapse it can be harder to get into remission and I will have to have a stem cell transplant at that time. If I have the stem cell transplant now I will decrease my chance of relapse to 20-45%. I have a fully matched donor at this time.
On June 22nd, I started my first day of appointments for the stem cell transplant. I started out in the lab where they drew tons of little viles for every test imaginable. Then I got a physical with the Physicians assistant. Next, I met with the nurse. She went over the schedule for the rest of the week, my medications list, and the schedule for the transplant. The plan is to start the full body radiation on July 10th, in patient chemotherapy on July 13th, and stem cell transplant on July 16th.
On June 23rd, I started with an meeting with the finance lady. I found out that if we did not have insurance that we would have to put 379,000 dollars down before starting the transplant. I hope everyone out there has insurance or gets it soon! Then it was off to get my EKG. My heart is beating fine. Next was my meeting with the transplant doctor and nurse. I brought Travis and my Aunt to soak up the information with me. He basically went over all the risks and side effects. Chances of treatment related mortality is 15-20%. The chances of GVHD (graft versus host disease) is up to 70%. This includes all GVHD from mild to severe and acute to chronic. Infertility and menopause if pretty much guaranteed. Some hard decisions lay ahead. I pray everyday for guidance.
Today started out with a blood draw and then a platelet infusion. My platelet number is 24 today and I need to be above 50 for a lumbar puncture which is scheduled for later in the day. Normal platelet numbers are 150-300. Luckily after the platelet infusion I was 52. Then I went for another pulmonary function test. I did much better this time. I was normal for my age group. The last pulmonary function test was a couple weeks after being intubated and I had just gotten off home oxygen the day before. Next, I was off to get my bone marrow biopsy and lumbar puncture/chemo injection. Lets just say my back is sore right now. I did get my Fentanyl lollipop and Ativan beforehand so I didn't mind the procedures much. The bone marrow biopsy is done on your back in one of the hip bones by a nurse. The LP is done on your spine by a physicians assistant. They also took a sample of bone.
On June 21 I had my last appointment with my oncologist Dr. Shustov for the next 100 days. He again let me know that the choice is up to me and that he is leaning slightly towards the stem cell transplant. I can stay on the maintenance therapy for 2 years and worry about the 65-75% chance that the leukemia will come back. If it does relapse it can be harder to get into remission and I will have to have a stem cell transplant at that time. If I have the stem cell transplant now I will decrease my chance of relapse to 20-45%. I have a fully matched donor at this time.
On June 22nd, I started my first day of appointments for the stem cell transplant. I started out in the lab where they drew tons of little viles for every test imaginable. Then I got a physical with the Physicians assistant. Next, I met with the nurse. She went over the schedule for the rest of the week, my medications list, and the schedule for the transplant. The plan is to start the full body radiation on July 10th, in patient chemotherapy on July 13th, and stem cell transplant on July 16th.
On June 23rd, I started with an meeting with the finance lady. I found out that if we did not have insurance that we would have to put 379,000 dollars down before starting the transplant. I hope everyone out there has insurance or gets it soon! Then it was off to get my EKG. My heart is beating fine. Next was my meeting with the transplant doctor and nurse. I brought Travis and my Aunt to soak up the information with me. He basically went over all the risks and side effects. Chances of treatment related mortality is 15-20%. The chances of GVHD (graft versus host disease) is up to 70%. This includes all GVHD from mild to severe and acute to chronic. Infertility and menopause if pretty much guaranteed. Some hard decisions lay ahead. I pray everyday for guidance.
Today started out with a blood draw and then a platelet infusion. My platelet number is 24 today and I need to be above 50 for a lumbar puncture which is scheduled for later in the day. Normal platelet numbers are 150-300. Luckily after the platelet infusion I was 52. Then I went for another pulmonary function test. I did much better this time. I was normal for my age group. The last pulmonary function test was a couple weeks after being intubated and I had just gotten off home oxygen the day before. Next, I was off to get my bone marrow biopsy and lumbar puncture/chemo injection. Lets just say my back is sore right now. I did get my Fentanyl lollipop and Ativan beforehand so I didn't mind the procedures much. The bone marrow biopsy is done on your back in one of the hip bones by a nurse. The LP is done on your spine by a physicians assistant. They also took a sample of bone.
Tuesday, June 8, 2010
Some new pics!
Discovering how much fun a birthday party with cake and a pinata can be.
Learning to fish with friends at Ohop lake.
Loghan brought Daddy his favorite toys and lovey so that Daddy could sleep with them. Loghan never sleeps without his lovey and always asks to bring his favorite toys to bed with him.
Here is the proof that I have been having some fun with my boys while waiting for this transplant to begin : )
Transplant Moving Along
I have my first transplant meeting on June 22 at the SCCA with my new team....The Transplant Team. Then the next 2 weeks will be spent getting all the work up necessary for the transplant, chest x-ray, CT and PET scans, bone marrow biopsy, Hickman (central line) placement, re-staging, echo cardiogram, lung function test, ect. I have to mention that I hated the Hickman and begged to have it taken out when my Dr. told me I wouldn't need a transplant. So much for that. It has 3 lines that hang straight out of your chest past your belly button. No swimming, and it has to be complely covered to shower and half the time it still gets wet. I am hoping that they can put it back where the scars are from the last one. I guess a port is not enough. On July 9th I start the chemotherapy and radiation for the transplant. On July 14th is the actual stem-cell transplant. I have to move up to Seattle on July 9th, where I will be living for the next 2-4 months. I am hoping for the 2 months : ) I have to have a caregiver for the the entire 2-4 months. I will hopefully only be in the hospital this time for a day. (As long as I still qualify for the mini-transplant) The rest is done outpatient. After the transplant, I go into the SCCA everyday for blood draws and fluids/transfusions as needed. The actual stem cell transplant is pretty uneventful, it's the blood counts coming back up and recovery from chemo and radiation that is the hardest. Getting an infection in the first couple of weeks before your body starts producing cells (esp. white blood cells) is dangerous. There is also the risk of GVHD (graft versus host disease). This can be acute or long term and presents is different ways. The new immune system from the donor can attack your own body. This can affect your GI tract, lungs, skin, stomach, ect. The new immune system also attacks the leukemia cells, because it recognizes them as bad-while my body doesn't. Oh and by the way... I have a 10/10 match for the transplant. All I know about the person is that they are from out of country, most likely a female, most likely from Germany or Italy, and the stem cells are coming from a reputable cancer center. They do not tell you anything else until 1 year post transplant if both parties agree. If this person doesn't pass the physical or decides not to go ahead with donation-I am out of luck because I do not have any other matches. Luckily, there is one person out there (on the registry) that matches me perfectly : ) I was told that only 30% of people that need transplants find matching donors, so I am feeling pretty lucky. I am still on 3 oral chemo drugs and one IV chemo drug, but I am feeling good and growing back some hair. I am almost to the point I might feel comfortable in public with no hat on. almost.
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