‘cancer’ Category

Chemo: Day 1

Yesterday was my first day of chemo. After reading many people’s stories online, I had some idea what to expect logistically, but people’s reactions vary widely. Some had virtually no side effects during chemo, until the later months (the effects are cumulative), where others had significant side-effects right from the start. So far, I think I’m falling somewhere in between. This morning is the first time I’ve had any interest in turning on my laptop, which for those who know me well, means I wasn’t feeling too well after getting home from chemo. I’m presenting here a timeline of my day, which I’ll also be posting on the Hodgkin’s Forum “Chemo 101” thread so future newcomers to this can compare my experience to others.

• 7:30am – Finished shaving my left arm, since they always use so much tape with the IV, and it’s extremely painful getting the IV removed from my hairy arm at the end of the day. This will become ironic around 11:30.
• 7:45 – Had a light breakfast – english muffin with jelly, and orange juice.
• 8:00 – Took 1 Emend (nausea preventive) pill. These pills are $140 each, and come in a package of 6 (three for this treatment, and three for my next treatment in two weeks) for $840. My co-pay after insurance is $40. Whew! Got in the car to drive to Fairfax Oncology offices for 9:15 appointment.
• 9:00 – Arrived at office (traffic was about average, despite heavy fog with 1/8 mile visibility, which closed down Dulles, National, and BWI airports). Fortunately we could use the HOV lanes on the Dulles Toll Road since there were two of us.
• 9:15 – Met with financial adviser to review liabilities and payments. Each chemo visit (I’ll have 12) costs $4,030, for which I have a $15 co-pay. Now I’m starting to appreciate United Healthcare insurance a little more than in the past. The day after each chemo I come back for a few minutes for a quick shot of Neulasta (white cell growth factor) which is $6,892 each (100% covered!). I’ll sometimes need a shot of Aranesp (red cell growth factor) which is $2,400 (again 100% covered). If my platelet count drops, I’ll need a platelet transfusion which we didn’t discuss costs of yet. Also picked up some hot tea, as it was a little cold in the office. I found myself sipping hot tea through most of the day.
• 9:30 – IV install #1, left arm. Needle popped out of or through the vein after a few minutes, so we had to do a new one.
• 9:35 – IV install #2, left arm, different spot. Start saline drip. Sign “consent for treatment” form. Reviewed Monday’s blood test results:

• White blood count (WBC) was abnormally low at 2.6K cells per uL (microliter) of blood. Normal range is 4.6K – 10.2K. This is also the lowest I’ve ever seen my WBC in 4 years of reviewing my routine tests. My neutrophil count (the white blood cells that attack bacteria) was low, at 1.5K. Normal is 2.0K – 6.9K. The nurse sent an email to my oncologist asking if we could proceed with chemo today.
• Red blood hematocrit (HCT, the % of blood volume made up of RBCs) was also low, at 37.1%. The normal range is 39.0% – 53.7%. If my HCT drops below 36% at any time, I’ll need an injection of Aranesp to boost them. My HCT has historically hovered in the 37% = 38% range, so this wasn’t much of a surprise. I’m folic acid anemic due to my Crohn’s Disease, which probably hasn’t been helped by removing 4 inches of my terminal ileum, which is the only part of the intestine that absorbs B-12, which also is needed for RBC production. I’m taking Folic Acid and B-12 supplements now to see if that helps.
• Platelet count (needed to prevent bleeding and to form clots) was normal at 178K per uL. Normal range is 142K – 424K. Glad this one’s normal, since there’s no pills or shots to fix it if it’s low. The only option is a platelet transfusion from someone else’s blood. Platelet count below 100K means chemo needs to be delayed.

Well, that’s a lot to write (and read), but it’s a full account of a busy day. I have to complement the entire staff at Fairfax Oncology – every person there was extremely friendly, helpful, accommodating, and patient, and made the whole experience as pleasant as possible (fetching me a heating pad when they noticed my IV hand was very cold, answering every little question we had, etc.).

I promise I’ll keep my next entry short :-)

Two days ’till first chemo

The weather the last couple days has been unseasonably warm, so it seemed like a great opportunity to put some blue icicle Christmas lights up! Kat did most of the work, since I have no interest in being 20 feet up a 28 foot extension ladder. We’re going to try to extend them the rest of the way around the garage roofline in the next day or two. We’ve also got a 6-foot lighted inflatable Homer Simpson on the lawn :-)

We’ve created a St. Lucia photo gallery with over 100 photos from the vacation on our main web site. Even though the weather here isn’t too bad for late November, we’re definitely missing the Caribbean weather!

Still no luck finding a Nintendo Wii. We got to Best Buy in Reston just before they opened on Sunday morning, but there was already a line of at least 30 people, and all the in-stock units had already been spoken for. We’re gonna give it a rest for a week or two and then see where things stand.

Today was my pre-chemo blood test, and on Wednesday I get my first chemo treatment, so I should have plenty to write about after that! I also picked up the results of the blood test I had about a month ago, which showed low white and red blood cell counts. That was just two weeks after my surgery, so hopefully my counts are closer to normal now. I need to have normal (or at least close to normal) red counts, white counts, and platelet counts before each chemo treatment in order to proceed.

It’s good to be home with the dogs again! Max (photo, right) is his usual goofy, cuddly self, and Sheba is still the spoiled princess who has to have everything done her way. We heard from her sitters that Sheba was a big hit at the elementary school bus stop every morning.

Chemo Class

Kathie and I had our two-hour “chemo class” last week. Most of the class was reviewing how the chemo affects the body, especially regarding blood cell production. We went over red blood cells, white blood cells, neutrophils, and platelets, and what the normal levels of each are in the bloodstream, and how each one is affected by chemotherapy. Since the chemo drugs kill lots of blood cells in addition to cancer cells, I’ll be getting a blood test halfway between each chemo session, and another right before the next session to make sure my counts are within allowable limits. The sessions are two weeks apart, and two sessions is a “cycle”. I’ll have 6 cycles of chemo, which means about 6 months. Since they know the chemo will affect my white cell count, I go back the day after each session to get a shot of Neulasta which increases new white cell production in the bone marrow. If the blood tests show the red count dropping as well, then they’ll give me something to counteract that. About a week after each chemo session is when the white count is going to be lowest, which will make me more susceptible to infection, so I’ll need to be sure to avoid sick people and other germ sources as much as possible.

I got prescriptions for Emend which is a relatively new nausea-prevention drug taken before chemo and again the following two mornings, which they said works extremely well at preventing nausea from starting, and Compazine which can be taken if needed after nausea starts.

My schedule is going to be something like this, recurring every two weeks:

• Week 1

• Monday: Blood test to check red/white counts

• Wednesday: Take first Emend (nausea-prevention) pill in the morning
  Chemo via IV in doctor’s office for 4 hours or so

• Thursday: Take second Emend
  Back to the doctor for a shot of Neulasta (white cell growth factor)

• Friday: Third (final) Emend
  Compazine as needed for nausea going forward

• Wednesday: Doctor visit / check-up and mid-cycle blood test

I’m hoping I can work Monday and Tuesday of week 1, and all of week 2, but I won’t know for sure until I see how the chemo affects me. A few people seem to be able to work 8-9 out of the 10 work days, most seem to work 6-7 days, and a few can only work a little. Some people on the Hodgkin’s forum say it’s common to sleep 16 hours a day for a couple days after receiving each chemo treatment (the fatigue is caused by the red blood cell count dropping dramatically after treatment). Time will tell!

All in all, I’m not too worried about it. The Hodgkin’s ABVD treatment is one of the less harsh chemotherapy regimens, and the drugs they have to counteract the side effects are getting better and better. I’m hoping I have minimal nausea and fatigue, except maybe for the day or two after treatment, and I’m not overly concerned about losing my hair!

Chemo on; Chemo off; Chemo on…

Well, I sent an email to my oncologist (I love having a doctor who does email!) asking about the implications of the new pathology report’s comments about spontaneous regression and immunosuppressive causes, and he replied saying, in short, I still need the chemo:

“That statement was something I had never heard of in Hodgkins Disease, to be frank. There is no literature to support it, while there is some data in people on significant amount of immunosuppression with a Non Hodgkins Lymphoma subtype called PTLD but that’s different. 6MP is a miniscule form of immunosuppression, by the way (PTLD is associated with immunosuppression associated with organ transplant levels of immunosuppression). My and others impression is that if you wait, you run the risk of relapsing with a significantly higher stage of disease (and not as curable, potentially)”

He reviewed the findings with five other doctors, three in his practice, and two at the Johns Hopkins Cancer Center, and all agreed that chemo is really necessary. One of the Hopkins doctors summed it up pretty well:

“I would treat with ABVD [chemo] and hold the 6MP [immonosuppressant] at least during treatment. Hodgkin’s responding to withdrawal of immunosuppression is an interesting thought but I don’t think I would pursue it except in the context of a study.”

I’m still trying to set up my consultation at Hopkins, but based on this, I assume they’re going to say the exact same thing to me. So… chemo starts 11/29.

Crohns results

Two new sets of results in one day! I just got a call from my gastroenterologist. The pANCA/ASCA test results are back, and they are positive for Crohn’s disease. The pANCA/ASCA test isn’t a definitive test, but it’s a strong indicator (something like 80%) for Crohn’s. So, my GI doctor says I probably do have Crohn’s, even though the first pathology report said “no evidence of Crohn’s disease indicated”. Since I’m not having major symptoms from the Crohn’s right now, he says I should continue to deal with the Hodgkin’s situation and resolve that first, then if I have GI issues, we can resume some Crohn’s maintenance / treatments.

The roller-coaster ride continues!