Thursday, November 6, 2008
GVD- treatment 2
This afternoon I'm supposed to go into the clinic and get a shot of Aranest and neupogen. These shots boost both my red blood cells and white blood cells. The chemo is famous for dramatically lowering my blood counts and the shots will support my levels so I don't need a blood transfusion or antibiotics. The worst part about these shot is that a couple of days after the injection I feel literally like iv'e been beat with a baseball bat. Iv'e had both these shots before individually and this will be the first time I get them in tandem so I expect to really be hurting in a couple of days. I suppose this is the price of avoiding another blood transfusion, which to me is the worst thing I've been asked to do during this whole cancer thing.
On a nonhealth related note, last night the whole family plus Auntie Em went to see Sasame Street Live. It was really fun, josh was jumping up and down and clapping and yelling at Elmo and the rest of the gang. The evening almost didn't happen because I accidently ordered the tickets thru ticketmaster and bought tickets for the wrong date. When I called to see if I could exchange for that nights show I got the standard "Its not our policy to exchange B.S." I'm not entirely clear on the circumstances but someone that had been following my treatment progress in the internet made a couple of phonecalls and arranged for tickets to be waiting for us at the ticketbooth free of charge to us. How Awesome!!
Monday, November 3, 2008
A Touch of mucositis
With this chemo I have changed my philosophy on pain management. On all the previous regimines I've accepted a certain level of pain and not used pain killers unless really needed (translation: never). The reason I accepted the pain was so that I could have an eyes wide open view of any changes within my body that might manifest as pain. With this GVD, if I even think I MIGHT have pain later, I go straight to the Lortab. I'm not messing around this time. The pain I'm experiencing is reasonably light, intermitant and easily treated. Mainly it is concentrated in my left lower lung and right lower lung. The significance of this is that this is obviously where my most threatening tumors are and the pain has really only taken hold since I've been on the chemo. I take that to mean that there is alot of inflammatory process going on in these battleground areas, and what that means to me is that there's some serious cancer killing going on there to. I have this irrational fear that I will become addicted to the Lortab and once chemo is over I'll have trouble kicking my habit. I know thats ridiculious but I've been pretty hardcore about not using pain killers and a total shift in doctrine towards a near habitual use is akward for me.
Anyway, in total GVD chemo remains the easiest chemo to date. Energy is still high, motivation still good. I'm having a little trouble sleeping (trouble falling asleep and staying asleep) but I still think it could be steroid effect. I fell off the decadron a couple days ago (the main suspect in my sleep trouble) and I taper off the prednisone before too long so I hope everything will resolve itself in a few days.
Saturday, November 1, 2008
GND is pretty easy
Friday, October 31, 2008
How do I restart this stupid thing?
Wednesday, March 26, 2008
Day +14 Home
Monday, March 24, 2008
Day +12 Trip to the Mall
Sunday, March 23, 2008
Day +11 Discharge
Saturday, March 22, 2008
Day +10 - WE HAVE CELLS
Friday, March 21, 2008
Day +6 thru +9: Buying time
Monday, March 17, 2008
Day +5 - Holy Crap this SUCKS
Sunday, March 16, 2008
Day +4 Neutropenic fevers
Saturday, March 15, 2008
Day +3 - King on his Throne
Annoying? -Yes.
Getting my down? -No
My WBC's dropped to 0.2 today. They didn't bother doing a differential because the white cells were so rare. I'm sure my ANC is below 300.
This evening my temp has crept up to 99.0 and my appetite has fallen to about 10%. I keep hydrated and active but I'm just not hungry. The nurse said this is completely natural and expected, I'll probably take this opportunity to loose a few of those post chemo pounds (Dont tell my nurse) Anyway, the nurse said a neutropenic fever in not uncommon and well treated if I develop one. For now the game plan is to hydrate like mad and eat what I can. Sounds like the Army...
Friday, March 14, 2008
Day +2, Blood transfusion
The evening before the transfusion, the nurse came in and drew a type and cross on my blood so they would be all prepared in the morning for the trasnfusion.
The entire infusion took about 5 hours because I got 2 units and each unit runs over 2 hours. Once it got started, my anxiety about the process went away. The nurses took vitals about every half an hour to monitor my progress. The transfusion raised my hemoglobin to 10.4.
Thursday, March 13, 2008
Day +1
Wednesday, March 12, 2008
Transplant day
Once I was settled into the room, my vitals were taken and I was connected to a heart monitor. In my civilian job I read EKGs for a living so I asked to see a printout of my heart rhythm, which the nurses gladly obliged. The next thing I know, the transplant coordinator is wheeling in this cart with a warm water bath for thawing my stem cells.

My transplant included three bags of stem cells that took about 15 mins each bag to infuse. Before I knew it, the transplant was over. The transplant team came in and sang me a re-birthday song and gave me my birthday cake


and that was it. I was done. NOW, I just need to survive the next 10-15 days.Melphalan, What a let down
The rules to melphalan are:
- Chew ice chips for 10 mins before infusion
- Chew ice chips during infusion
- Chew ice chips for 20 mins after infusion
- And of course, hydrate
The ice chips are supposed to protect your mucosa from the melphalan and avert mouthsores. hydration is a standing order for all chemos, enough said on that.
The infusion lasts about 30 mins and in very unremarkable, I had no nausea or any adverse reaction. As of this posting, I'm glad to report that there are no signs of mouth sores.
Saturday, March 8, 2008
Chemo
The BCNU dose of chemo was given over three hours and is reconstituted with alcohol, so I ended up getting a pretty good buzz off of it.
Now, I'm getting my dose of ARA-C followed by Etoposide. Both are one hour infusions with a flush in between. The nausea started shortly after my second dose of Etoposide.
My Meds:
- Zofran 8mg every 8 hours for nausea.
- Allopurinol 300mg in the AM to protect my kidneys from chemo
- Bactrim DS twice a day to prevent pneumonia
- Remeron 30mg for sleep
- Lorazepam 1-2 mg every 4 hours as needed for anxiety and nausea.
- Ambien 5-10mg for sleep
- Compazine 10mg every 6 hours for nausea
Wednesday, March 5, 2008
A-freakin-pheresis
A more detailed look at what apheresis is can be found at this link : http://en.wikipedia.org/wiki/Apheresis

Heres a look at the basic setup of the apheresis machine.
Before every session the nurses would draw a CBC from my hickman and enter the information into the apheresis machine. My WBCs were pretty high, 50 the first day, 41 the second, and 38 the last. The nurse said that a level of around 20 is average for this procedure. My RBCs and HCT were low but generally stable during the treatments. My platelets declined down to 111 by the third day, and the nurse said that was totally expected. In summary, don't be suprised if all your levels drop during apheresis.
On the first day of collection I collected 1.9 million. On the second day 1.8million and 1.4 million the last day. I had an above average yield and finished in three days, but on can expect to spend 4-5 days getting apheresis. Collection times running into a week to 12 days is not unheard of.
Some advice on apheresis is to load up on calcium before you go in. They treat your blood with sodium citrate to prevent it from clotting in the machine and some of the citrate ion is inadvertantly trasfused along with your treated blood. Sparing you a lecture on inorganic chemisty I'll just say that the citrate ion pulls calcium out of your blood and you may experience symptoms of hypocalcemia.
Early symptoms of hypocalcemia include: Tingling in lips and extremities.
Later signs and symptoms of hypocalcemia: Cramps, EKG disturbances, death.
I had trouble with calcium levels the first day but after injesting a few TUMS tabs the symptoms disapeared. The nurses recommended over the counter calcium supplements during apheresis: 1000mg the evening before and 1000mg in the morning before apheresis.
The stem cells (along with RBCs, platlets and some plasma) collect in a bag while the rest of your blood is returned to your body.

Saturday, March 1, 2008
Hickman and Mobilization
Essentially it is a tube inserted (in my case) in the left chest that is tunneled under the skin and enters the circulatory system at the left subclavian vein and is strung into the superior vena cava and stops just inside the right atrium of the heart.
The difference between what I have and the illustration is that my catheter stops when it just enters the heart and the catheter in the illustration continues into the pulmonary artery.
The catheter is split into two sides (one red and one blue) this is so, during apharesis they can pull blood out of my body thru one tube and reinstill the blood thru the other side. This keeps them from having to start another IV.
Care for the Hickman Catheter:
Flush each side with 10cc saline daily
Cleanse entire external catheter with alcohol weekly
Cleanse body area under bandage with alcohol weekly
Change dressing weekly.
If the dressing gets wet or looses integrety then change as needed.
More Detailed Care Instructions Here: http://www.cc.nih.gov/ccc/patient_education/pepubs/hickman.pdf
I also started the Mobilization process. Basically everyday I go down to the clinic and get a dose of neupogen. I'm no stranger to neupogen since I've been getting it all thru chemo. however I get a double dose for mobilization. Instead of getting the 400mcg that most people get, I get 950mcg everyday for about 5-6 days before they start collecting the stem cells. The most common side effect of neupogen is bone pain. It would be fair to say that I'm having moderate bone pain but the pain is reasonably relieved by Tylenol.
Wednesday, February 27, 2008
BEAM me up
Now I'm in the pre-treatmet phase of my SCT. Basically, this week I have classes on basic and catheter care, social work consult, labs, and a trip to the clinic to see the transplant doctor. Beginning this week I will start the mobilization phase of the transplant. During mobilization phase I will be gettting a growth factor called Granulocyte Colony Stimulation Factor, G-CSF also known as neupogen injected subcutaneously every day for about 4 days before the collection partion of the transplant. More on the collection part when I actually get to that point.
The chemo I get during the conditioning phase is called BEAM
B - BCNU (carmustine) - Interfers with the growth of rapidly growing cells and causes them to die. Main side effects- interferes with platlet development,
E - Etoposide (VP-16, VePesid) - Interfers with and stops growth of cells. Main side effects- Mouth sores, disupts platelet and white blood cell production. Had this drug before during ICE chemotherapy. I thought it was the easiest to tolerate.
A - ARA-C (cytarabine, Cytosar-U) - Also interfers with the the growth of fast growing cells Main side effects- Disrupts platelet and red blood cell production, also disrupts white blood cell production. Anemia, neutropenia, bone pain, conjuctivitis and fatigue. kidney problems.
M - Melphalan (Alkeran) - Interfers with cell growth, kills bone marrow. Main side effects- Total destruction of the bodies ability to produce blood components. Mouth sores, kidney damage, black tarry stools, hair loss, infertility. This drug is supposed to be the Darth Vader of chemotherapy drugs. It's so mean that it has its own theme music. Patients are instructed to eat ice chips for an hour prior and an hour after administration to slow the infiltration of Melphalan into the epithelial cells in the mouth. The theory is that this will lessen the mouth sores.
I'll be getting my conditioning chemo therapy on this schedule:
Day -6: BCNU 300mg/m^2 IV once at 1500
Day -5: ARA-C 100mg/m^2 IV BID (twice a day) at 0800 and 1800
Etoposide 100mg/m^2 IV BID at 0900 and 1900
Day -4: repeat day -5
Day -3: repeat day -5
Day -2: repeat day -5
Day -1: Melphalan 140mg/m^2 IV at 0800
Day 0: Transplant day. 24 hours after the dose of Melphalan.
Day -6 starts the day after stem cell collection ends.
Wednesday, February 6, 2008
ICE is making me a crackhead
Friday, January 18, 2008
Shampoo? How silly
In other news I just found out that the KU-MU basketball game will be syndicated on a channel that I don't get. So, what does that mean for me? You guessed it.. roadtrip to the bar! So far it looks like the only people going are my dad, Carrie, and of course me. Were going to try to recruit Casey and perhaps Jenny to come along too. I'd like to get Kevin to come but his work schedule might interfere and the fact that he's not quite 21 really sucks. I wouldn't want him to feel like a designated driver. It will be alot of fun and I've been looking for an excuse to go out, eat some hot wings and get loaded while watching what will no doubt be a fantastic basketball game. The KSU game is at 3pm and the KU game is at 7pm so there is a chance that I could spend the majority of my Saturday afternoon, not only at the bar but reasonably intoxicated. I'll have to see if the rest of the participants are onboard for coming in early to catch the KSU game and have essentially an all day beer and basketball marathon. I bet I won't have much difficulty selling the idea. I'm getting giddy just thinking about it.
This morning a social worker from Nebraska Medical Center called to ask me a few question about how I'm doing as far as support during and after the transplant and to try to identify and socially relevant issues I may have. The interview went well and of course no issues were identified but it seemed a little odd that I now have a social worker looking out for my best interest. I guess thats what she doing. Its nice that I have her services available if I need them but I really don't think I will. I'm of the opinion that well adjusted law abiding citizens really don't need the services of a social worker. She said that being away from home and staying in the hospital was stressful. I told her that I came from a medical family and wan't afraid of hospitals per se. I didn't have the heart to ask where she was while I was away from home for military service. If there was ever a time when I needed a social worker to help with my issues... that was it.. sheesh. Anyway, I guess thats just part of the process.
Thursday, January 17, 2008
Lymphoma forum
It's been a really useful resource for some of my super specific questions and concerns not to mention that there is a camaraderie among the active posters that I could sure use while I'm interned up in Omaha.
Wednesday, January 16, 2008
ICE number 2
Last week I had my second round of ICE salvage chemotherapy, basically thats the early preparation for my stem cell transplantation. I tolerated the chemo actually pretty well. I had a couple days where I was nauseated but nothing I couldn't stand. At this point I only feel a little sluggish, the best way to describe it is to imagine the last 2 hours of a hangover where you don't feel 100% but are far from being trashed. That's where I am now.
One of the side effects of the ICE chemotherapy is that it kills alot of white blood cells and weakens my immune system. To combat that I get a shot called Neulasta. You may have seen commercials for it on TV. The thing about Neulasta is that, number one, it hurts like a bitch when I'm getting it injected and, number two, about five days after injection, my bones feel like someone beat me with a baseball bat. Unfortunately, I'm right at the five day point now and can expect to be in considerable pain soon. So I'm pretty excited about that.
The next step in this transplantation process is a PET scan. For those unfimiliar with that, it is basically like a CT scan or MRI that can detect cancer. Around the end of the month I'll have a PET scan to see if I'm in remission or at least very close to it. If I am in remission then I travel to Omaha for the collection phase of the transplantation. Basically I go up to Nebraska Medical Center and they hook me up to a machine like a dialysis machine that takes stem cells out of my blood and returns the rest of my blood to normal circulation. To clarify, a stem cell is like a baby white blood cell that hasn't decided to become a white blood cell yet. I'll need to collect these baby cells because later therapy will kill all the white cells I have in my body and they will need to recolonize my body with the harvested cells. Harvesting stem cells should be pretty quick, I've heard estimates ranging from one day to two weeks. Taking into consideration how well my white cells have heald up during treatment thus far I expect to be closer to one day than two weeks.
Once I've collected a sufficient number of stem cells (approximately 9 million) the real fun part begins. I'll be admitted to the hospital in Omaha for high-dose chemotherapy. From what I've read it will be a five day marathon where I will be infused with a chemotherapy called BEAM. Basically this is the atomic bomb of chemotherapies. It will wipe out all of my white blood cells, bone marrow and make my immunities virtually dissapear. After the five day infusion they doctors will put the collected stem cells back in to my body and hopefully they will regrow the lost white blood cells and bone marrow. I'll be on a modified reverse isolation protocol for about two or three weeks before my white blood cells are back to a point where I can leave isolation. Simple enough.
Right now I'm really motivated to do this thing and get it over with. Pardon my language but I'm really tired of the fucking cancer business. I'm ready to get back to the real world. But you know what they say " All good things to those who wait."

