Cycle #2: Days 3 & 4

Three things to report:

First, on Day 24 I was hit with a real wave of fatigue about mid-day. I napped for quite a while but felt a sense of lethargy for most of the day. I felt a bit tired on Day #25. Not as bad as Day #24 but more than usual.

Second, I am experiencing intermittent nausea for which I am taking Ondansetron. The Rx says to take every  6 hours as needed. I've noticed that it works real well for about 4 hours and then the nausea reappears.

Third, my BP is high again. I have upped my BP meds just as I did during my first cycle but it's still typically in the 180/100 range. Definitely higher than it should be but not too crazy in the pheo/para world. My oncologist has prescribed Furosemide to help control by BP but I haven't tried it yet. I am a bit wary of adding new BP meds to the mix, especially when they've been prescribed by someone other than an endocrinologist with pheo/para experience.

Cycle #2: Days 1 & 2

This weekend I went in for my second treatments. As with Treatment #1, it was administered over two days. The first day took about 2 hours to administer, and the second day was less than 1.5 hours. Unlike with Treatment #1, I did not experience any of the burning sensation in my arm with the IV, which was nice. There is not much medical news to share other than on Day #2 I probably felt as good as I have in a long time.

When I decided to create this blog I also decided that this would not become an outlet for complaining about the administravia and hiccups that are inevitably part of receiving medical care. The only exception to my complaining is when I can muster a constructive or helpful suggestion to help deal with the problem that I faced. So here we go: On Day #1 of Treatment #2, I had to wait over 3 hours in the waiting room before I was taken-in to receive the CVD. The problem was simple but very annoying. Because CVD is rarely administered, its protocol and all of its specifics are not pre-loaded into the computer system. The result is that all of the instructions are hand-written by my oncologist, are given to the pharmacists, and then when it's made the nurses take over. This time, the pharmacists were unable to read the oncologist's writing. As it was a Friday, they could not locate the oncologist. They then had to track-down another physician who gave the instructions, at which point the pharmacists could start making the cocktail. 2 hours to get the instructions, and then 1+ hour to follow them...pretty brutal as a patient to wait that long to even get the chemo. So here is my constructive suggestion: If you are receiving CVD, or any rare chemo for that matter, confirm that your physician will either be around on the day that it is made and administered, or if this is not possible, confirm who is on-call and that they are familiar-enough with your case that they can answer questions about it.

Cycle #1: Day 19

Today I met with my oncologist as I have my second treatment this week. Some interesting takeaways:

• I was only given 75% of the treatment in my first cycle because my platelets were so low (approximately 65K). My second treatment will be 85% of the full dose. They will continue the march towards 100% as long as my body holds up.
• My platelets have actually increased during the first cycle.
• Despite previously saying that I would lose all my hair, they are now saying that it may just thin. This is more consistent with what I heard from another patient who said that her hair only thinned while on the treatment. As of yet, nothing has happened to mine.
• I have been given 2 prescriptions to help with the nausea that I encountered approximately 1 week after the treatment. The two drugs are Domperidone and Zofran. What I like about Zofran in particular is that it is taken under the tongue and dissolved while it's in your mouth. On days when I feel very nauseous, swallowing a pill is both uncomfortable, and may result in vomiting, which then leads to the problem of figuring out whether the pill had been absorbed or whether it was discharged with the vomiting. This solves that problem.
• My treatments are 3 weeks apart, not 4. An administrative error had been made with my original scheduling and so I am indeed following the normal protocol as far as timing goes.

Overall, this past week was much like week #2. My energy was up, no fevers, no vomiting, very infrequent nausea. Again, not much to report.

Cycle #1: Day 14

The last 3 days have been very good. My energy has been relatively normal, no nausea, no vomiting, nothing really to report. I do have some aches in some of the bones where there are known lesions, but again, this is pretty normal for me (with or without treatment). I have not yet experienced hair loss (which I was told would happen) but I suppose that will happen at some point. My latest bloodwork taken Day 8 (I'm due for more bloodwork tomorrow) shows that my platelets are unchanged and, in fact, my WBC increased (probably as a result of the Neulasta).

Overall I'd say that "I'm waiting for the other shoe to drop," as I feel pretty good.

Cycle #1: Day 11

The nausea has been notably worse for Days 8-11. I do not have any anti-nausea prescriptions so I have been taking Gravol, which has not helped at all. The nausea has been accompanied by vomiting and for a couple of days I was unable to keep anything down. Had this not occurred over a weekend I would have called my oncologist but such as it was, I suffered through it. By the time Monday rolled around the nausea and vomiting both subsided and it was no longer a problem. For the next treatment I will definitely make sure that I have some pills on-hand to help deal with this.

Cycle #1: Day 7

I have experienced some nausea over the last few days but no vomiting. Today the biggest change is huge fatigue and a fever. My temperature got up to 101.3 and my oncologist told me to call him with anything over 101. When I got a hold of him he said that he was not too concerned but that if it persisted to let him know and that I should come in for blood cultures and antibiotics. His best guess was that some of the cancer cells were dying (due to the CVD) and that this can sometimes cause fever...here's hoping that he's right. As it turned out the fever subsided by the next day so this became a non-issue. My BP has also returned to normal, which is nice. I had temporarily increased my doses (I added one Labetolol and one Doxazosin per day) but no longer need to do so, which is great because those meds are not without consequence.

Cycle #1: Days 1 & 2

So today I began a treatment regimen involving cyclophosphamide, vincristine, and dacarbazine, aka CVD. It is being administered to me over a 2-day period every 4 weeks. I am entering this treatment with a low platelet count due to previous treatments and surgeries, which is why it's every 4 weeks, not 3. It may also be the reason the CVD is being administered over 2 days, but I'm not sure about that. Before the treatment was given on each day, I was given Kytril, Emend, and dexamethasone. All 3 are intended to help with the nausea and vomiting associated with chemotherapy. Historically I have had a very weak stomach and this has been a major concern of mine but I had no problems either day. Not sure if the meds are phenomenally successful or if it just hasn't kicked-in yet. I was also given Neulasta to help boost my WBC. The bloodwork will show if this made a difference or not.

I really only have 3 things to report so far:

1. My BP has increased. Even with Doxazosin and Labetolol my BP has climbed. I take this to mean that the tumours are being affected by the treatment and are reacting as they often do when they're manipulated. For most of Day 2 I was in the 170/100 range and if this continues I will probably need to increase my meds (currently 200mg/day Labetolol and 2mg/day Doxazosin).

2. I had a slight burning sensation during the infusion in the arm with the IV. Nothing bad but noticeable. The cocktail can irritate the veins as it goes in, which is all that it was.

3. The Dexamethasone is causing sleep problems for me, as it has in the past. For me it manifests itself in a 5 am wake-up from which I cannot go back to sleep. Manageable, yes, but still disruptive and annoying.

Other than that, nothing to report.