Cycle #12: Day 1

Today I received my Day 1 regimen of CVD, which includes all three drugs. Not much to report on that other than my veins continue to be increasingly problematic to find & stick, and there did seem to be more burning upon administration, even with a heating pad and a saline mix. Other things worth sharing:

Last week I had a spinal MRI and that region continues to be stable, as in, no notable changes. The radiation oncologist showed me the image of the tumour that is interfering with my right brachial plexus (that has been doing so since October 2010, approximately 1 year ago from today). It is amazing how the combination of radiation + CVD has cleaned-out a lot of that area and there is less tumour to interfere with the plexus. Good news of course. This particular tumour, if unattended, can become immediately destructive as it is responsible for the hand, arm, shoulder, and upper chest.

Yesterday I had a cranial MRI and next week I will have a CT that will cover my knees, skull, and everything in between. As I get those results I will share them.

I will also take a moment to share to my current medication regimen:

• Labetolol, 100mg x2/day
• Doxazosin, 1mg x2/day
• Lovenox, 120mg x1/day

For the first 4 days of the chemo I also take:

• Neulasta (single injection on Day 3- 24 hrs after Day 2 chemo)
• Emend (Days 1, 2, and 3)
• Dexamethasone, 4mg x2/day (Days 1-4)
• Ondansetron 8mg x2/day (Days 1-4)

Off the top of my head I am not sure how this regimen differs, if at all, from whence I began. In the event that it is different it is worth noting (you can read earlier posts to see what I was doing in the beginning).

Cycle #11: Day 3

It has been a while since I have posted but frankly there is not much to report. So far, so good. Here is all I can think to share:

1. After Cycle #9 we did a brain + spinal MRI and the results were, for the first time (for these parts of my body), positive. And by positive I do not mean neutral, or no change. Rather, some of the lesions in my vertebrae have actually reduced in size. This is an important development as the spine in particular has been resistant to other treatments that I have done in the past. In fact, the last spinal MRI that I did, showed a couple of new, small lesions in my vertebrae, and that was after starting CVD. So actually seeing an improvement was very good. My next spinal MRIs are in early September and I will be sure to update with those results.
2. I have taken to swimming and biking on a stationary bike, and both are progressing nicely. I am getting stronger and my stamina is also increasing.
3. After Cycle #8 I did a CT that covered my pelvis, abdomen, chest, head, and neck- essentially everything from mid-femur and above. My doctor was extremely pleased as there were multiple sites that had clearly improved on the scans and no real worrisome developments elsewhere. For a tumour in bone to show improvement means the improvement has to be relatively significant as measuring size change in bones is not particularly easy or straightforward. My next CT scan is in early October, after Cycle #12, and I will be sure to update with those results.
4. My veins have become progressively more difficult for my nurses to find. I am told that this is a perfectly normal reaction to extended chemotherapy and there is very little that we, as patients, can do about it. The only real advice that I've received is to make sure that I am well hydrated before I come to the hospital, which is just good advice in general, so I try to follow that. Because veins have become an issue, I've asked that they leave the needle in my arm so that when I go for Day 2, they don't need to stick me again. It is sort of annoying leaving it in but they wrap it up and it's less of a hassle than watching a nurse try and find, and stick, a vein.
5. Surprisingly, my platelets are higher than when I started. I believe they are currently around 140K which also means that I have resumed taking Lovenox. I do not have any known blood clots but since I have had two major ones in the past, the doctors feel that resuming taking it is a good idea.

As I review this it appears that some of this is quite important and should have been shared in a more timely manner and I will be sure to keep this up more actively so that I don't miss anything important going forward.

Overall the plan is to keep going until CVD stops working or until it is compromising my health in other ways and should be ceased.

Cycle #5: Day 3

Fatigue kicked-in at around 2pm. Was still able to attend a family get-together but was definitely feeling the effects of the treatment. BP seemed to be normal. There was some nausea but it was adequately managed by the meds.

Cycle #5: Days 1 & 2

Received treatment for Cycle #5. Generally uneventful. Some slight burning when the dacarbazine was being administered but the addition of saline and a heating blanket on my arm took care of the discomfort. The CVD was ready quite quickly both days but the issue seems to have been the availability of chairs a/o nurses. Waited 2.5 hours Day 1 to be admitted and 45 minutes Day 2 to be admitted.

Cycle #4: Day 20

As I gear-up for Cycle #5 I am a little bit shocked about how well I feel. For the majority of this cycle I have felt strong, no nausea, no vomiting, huge/healthy appetite, and alert. I also still have all my hair. With the exception of the first four days, I have truly not felt like I was in the midst of a chemotherapy regimen. I think that part of this is the prednisone, but I can't imagine it accounts for all of it. Really wonderful. The cough continues to be held at bay by the steroid. The orthostatic hypotension is periodically and unpredictably troublesome, but I'm taking all the steps that I can to minimize it. It has truly been a spectacular couple of weeks. I think the last time that I felt this good was about 9-10 months ago.

Cycle #4: Day 5

As usual, fatigue and elevated blood pressure. No real nausea or vomiting. Nothing much to report.

Cycle #4: Days 1 & 2

I received chemo yesterday and today. This is, by far, the fastest their operation has even been. On both days the chemo was prepared before my arrival and as a result everything went very smoothly. Another patient brought in popsicles so we had a little popsicle party which was fun too. Nothing else to report.

Cycle #3: Day 21

A few things to report:

1. My cough has persisted in the way that I described before. It has maybe become a bit better but not overly so. When I cough something up, it is clear in colour, which is apparently good news. My doctors have put me on a small dose of prednisone to help with it. With the prednison, the cough has completely gone away. Hopefully the underlying condition will resolve shortly.
2. I had a CT of my head, chest, abdomen, and pelvis. Now I have a lot of tumours so it is not practical or meaningful for the radiologist to study every one of them, but overall the news is positive. Some nodules that appeared in my lungs 5 months ago (2 months before I even began treatment) appear smaller. Some additional bony lesions also look to have improved. A couple have also worsened but none threateningly so.
3. I had an MRI of my spine that shows no significant change from approximately 3 months ago. This result is most reassuring as even minimal worsening at the spine usually requires a major intervention and can have very serious consequences.
4. The lethargy that I have been feeling has extended a bit more into week 3 than it has in the past. I am still getting around doing things, but by the end of the day I am pretty zonked.

Cycle #3: Day 9

**One administrative note: I do not usually post on the day about which I am writing. I take notes on individual days so that when I start to write I can refer to them, but as you read this, the salient date is the title of the entry, not the day of its publishing.**

The first week following Treatment #3 has been difficult:

1. The dexamethasone that I take for the first 4 days of treatment really disrupted my sleep. For four consecutive days I woke up at 2 am and was totally unable to go back to sleep. Also, I woke-up completely drenched in sweat. I am not talking about a bit of perspiration....my spot in the bed looked like the chalk outline of a body on a murder scene, which a child subsequently coloured-in with a crayon. It was very unpleasant. Two days after stopping the dex I began to sleep normally again, but four nights of sleeplessness takes a toll.
2. My blood pressure has been very high again. Usually 200/110, even with a doubling of my BP meds.
3. My body has been quite achy in the spots where there are prominent tumours. For me this has meant stiffness and pain in my neck, left hip, back, and right femur.
4. I have had a cough that is neither worsening nor improving. It is causing a real shortness of breath that I notice when I talk and walk. While 1-3 above are definitely related to the chemo, this one I am not sure about. I have two two-year olds and they are constantly bringing colds/flus/coughs into the house, and this may just be one of those. I have already decided that if I still have the cough in 4-5 days, I will ask to be seen by my doctors.
5. Yesterday I had a fever for about four hours. I usually take my temperature at least once per day and until last night it was always normal. Last night it went from 99 to 100 to 101 in about 45 minutes, and then it stayed at 101 for a few hours. Then it subsided. This is sort of what happened during the first week after Treatment #1 but the numbers were a bit higher this time. Since it went away so quickly I probably will not mention to my doctors until I see them next.

This morning, which is Day 51, I feel better than I have for most of this week. I definitely still have the cough but 1, 2, 3, and 5 (above) have resolved. We'll see if today is the transition-day for the much more enjoyable weeks 2 and 3 after treatment.

Cycle #3: Days 1 & 2

Nothing medical to report. I felt very good both of these days and from a process perspective there was a big improvement. While there was a wait on the first day, it was just over an hour...much better than the 3.5+ hour wait during Treatment #2.

During the administration of the dacarbazine there was a slight burning in my veins so the nurses added some saline to the mix and the problem went away immediately.

The pre-chemo meds were exactly the same as last time and did their job well again (i.e., no nausea/vomiting).

Cycle #2: Day 19

Today I met with my doctors as I usually do on treatment week. This was actually the first time that I've met with my actual doctors since beginning the treatment as they were both on vacation when I had an appointment during the week of Cycle #2. From their perspective I seem to be doing significantly better than I was prior to any treatment at all. Overall, my wife and I agree with this. It is hard to be entirely objective because when I started chemo I was just over a month from a pretty big back surgery...part of me "looking and feeling better" is a result of just having had more time pass since the surgery. Despite this, though, my body is telling me that the treatment is doing something and that I am actually better off than I would be without the chemo. For Treatment #3 I think that they are going to administer the same dose as last time. They are doing so because I am tolerating it quite well and because my platelets have started to drop. I believe they are still above 50K, but not by much, and that is an overall decrease from where I started.

One of the tricky parts of a metastatic cancer, and there are many, is that tumours do not always move in lock-step with one another. For example, while someone may have disease that is generally getting better, there could always some that are worsening. This has been a problem for me in the past. While my body as a whole responds well to treatments, sometimes individual tumours become worse, requiring immediate attention (usually surgery or radiation). This may or may not be the case right now. I had a spinal and brain MRI this week and while my spine looks stable there is one spot in my brain stem where the radiologist is not sure if the disease has worsened. He has ordered a follow-up MRI in 3 weeks which will give him more information. Due to the sensitive nature of the location of this tumour, it is likely that any significant worsening would have manifested itself in physical symptoms for me. In this case the tumour is compressing the right hypoglossal nerve (the nerve that controls the tongue), which I've had problems with for years, but no real change to report.

In two days I receive treatment #3.

Cycle #2: Day 9

After a relatively tough first week after treatment, I have started to feel quite good again. The most persistent problem to report, and one that is not particularly unique to being on chemo, is the orthostatic hypotension. It continues to be very unpredictable: some days it is not at all a problem, others it is entirely debilitating. I still do not seem to have lost any hair which is weird. My energy level is quite good and I am able to participate in the daily activities that I would like to.

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.

Introduction

Let me begin by detailing the purpose of this blog. I am a 33 yr old man with metastatic pheochromocytoma/paraganglioma. I've been living with the disease for 10+ years and during that time I've been treated with MIBG, Sutent, Azedra, multiple rounds of radiation, and many surgeries (e.g., back, spine, femur, tibia, aorta). I'm at the point now where the disease has turned more aggressive, as what ultimately happens with most SDHB patients, and so I'm going to try CVD chemotherapy. As I prepared for CVD I could find little more than anecdotal information detailing the experience. My goal is to share my experience so that others may better prepare themselves for this journey.