Chemo #2 (ICE regimen)

OK, we are going to have to get a bit tougher here. The first regiment of chemo with Folityn appeared to be doing the trick in reducing the cancer, but we have since found that the cancer just went stealth on us. So the next step in this battle is get out some bigger guns and take another "shot" at reducing things so that we can get into the real fight with the stem-cell transplant. The plan now is to take the x-Mass holiday off and start fresh on Tuesday 12/27 with a first regimen of a chemo option known as ICE (ifosfamide, carboplatin, etoposide). This treatment will require another 3 days in the hospital as the drugs are administered.  I added same details below. So wish me luck, I will post more after the treatment. 


HAPPY HOLIDAYS ALL!



On the first day of ICE chemotherapy, you will be given an infusion of etoposide for an hour. On the next day (day 2) the etoposide will be repeated. You will also be given a 60-minute infusion of carboplatin and start a 24-hour infusion of ifosfamide and mesna.


On the following day (day 3) you will be given a third infusion of etoposide, again over about an hour. You will finish your 24-hour infusion of ifosfamide with mesna and be given a 12-hour infusion of mesna on its own.

Blood Clot Incident of 2011

          OK I still have an issue as to where to start this blog, so for now I am going to back up just to last week, Monday (12/12/2011). That is when this last incident (the blood clot) begins. I will try and do a few posts to explain “how we got here” later, but I want to focus on getting the current info out as soon as possible.

           So here is the story- for several weeks I have had an ache on the right side of my neck. Karen and I have been treating it with “Therapeutic Mineral Ice”, “IcyHot Cream” and the like, but nothing was giving me any real relief. Then on Monday around noon, the ache turned into a pain and started to feel like what I thought was a swollen gland. I pushed through the day and just thought I needed some rest. The next morning I awoke to some real discomfort and knew I needed to get in to see the doc. As the doctor’s office does not take calls until 9AM, I decided to go to work for a few hours and just step out for the appointment once I had one. I called right at 9 and got a call back in about 15 minutes asking me to come in ASAP. I got to the oncologist office (Dr. H) by 10 and within 2 minutes of seeing me, he asked if I could drive over to the ER (only 2 miles). He wanted a scan done right away. So I headed over to the ER and was moved quickly into a room where I was visited by the ER doc and a CAT scan was ordered. It took til about 1PM to get the scan done and about another 3 hours for the ER doc to confirm it was a clot and that I needed to be admitted. So it’s about 4PM Tuesday now and the ER doc and Dr. H are talking over the phone as to what action to take. At this point, they are both pretty sure that the clot has been caused by my power injectable port (it’s used to dispense my chemo). The question is to take it out or not. Taking it out will likely remove the cause, but it may also leave scaring behind and thus remove any chance of putting one back. They could put it on the other side of my chest but I am still going to need a different port in the future for the transplant process (I’ll explain more about this part later) so we are reserving that area. So the decision was made to hold out for a day or two and see if they could get my body to reduce the clot by itself.  Finally, I am headed to a room and a bit of rest. It’s now 6 PM ish.

                Wednesday 12/14-  Another uneventful night, except for a visit from the vampire crew (phlebotomist, the people who draw your blood). At around midnight, this lady comes in and wakes me to let me know she is not going to fill the bottles all the way. I groggly look around and see what I can only describe as four 18 ounce coke bottles on the tray next to her. I begin to sweat...  It ends up do not being so bad, in fact, I had to ask the nurse in the morning did this really happen. She confirmed it did, and I commented how great these pain meds are.

                Thursday 12/15- This night goes OK.  The only event was an ultrasound that showed nothing different from the original CT scan.  We are still waiting for my body to take over and thin out the clot, but I don’t look good. 

                 Friday 12/16- We are done waiting, the pain is still bad and the swelling is holding steady, it is time to take some action. The port most go, 11AM today.

                It is now about 8:30 PM,  the port is gone and things are starting to look up. The swelling is down but I can't tell if there is less pain or did they just move it to the surgery site in taking out the port. Tomorrow should be even better.

                Saturday 12/17- The vampires were back last night and took another 4 coke bottles for blood cultures.  This time I witnessed and remember the whole thing. Anyway there is real talk that I could get out of here today. Dr. H thinks it is OK and the last 3 talks with the infectious disease specialist have led to green light from their end (no infections). Not sure why I am still on IV antibiotics if there is no infections, but that’s not my concern. Right now, I need to show that I am healthy (enough) to get out of the hospital. This will not be an easy task as I still show a low grade fever 100.2. There are a few standard requirements before hospital discharged 1.) are you eating ok 3 meals a day 2.) are you going to the bathroom ok (1’s and 2’s every day) and the big one 3.) do you have a fever. At this point, I am only going to clear the eating bit.

                Well it’s now 5:30PM and took some convincing but they are going to let me go home. Hurray! For me! It looks like there is going to be quite a bit of follow up appointments next week and we are going to have to administer an injection of Lovenox twice a day until we get the Coumadin in a therapeutic state (between clotting levels 2 to 4)

                Sunday 12/18-  Relatively uneventful, however the pain in my neck has now moved to more behind the ear and twisting around the neck is an issue again. Also still working with the nagging low grade fevers. I have an appointment with my general practitioner tomorrow and will ask more about these changes.

Ok we are caught up for now. You have no idea how long it took to get this out but I know it is worth it, like I said I do not want to overwhelm anyone with stuff, I just had a lot to cover this past week. As always feel free to skip anything.

Where to start?

Well I guess the best thing to start this blog with is a brief explanation as to why I am writing it in the first place. Truly, this is not an original idea and in fact I am quite literally taking it from one of my "mentor" transplant contacts (Dr. Sam). My goal here is just try and keep family and friends up to date as I work through my experiences with t-cell lymphoma. I hope to keep things light hearted and not be too factual as this goes on and I am sure some ranting and raving will be included as I deal with insurances, hospitals and doctors. So please, feel free to view the blog as often as you like and definatly skip whatever you don't like (I will not be offended).