New Chemo Protocol Started – March 14, 2015

Yesterday I received my new chemo protocol of Adriamycin and Cytoxan.  I’ll get 3 more infusions of these 2 chemo drugs over the next 7 weeks, and then Taxol, Herceptin and Perjeta over 12 weeks, once a week.  Let’s concentrate on these two drugs for now.

I arrived early so that I could receive the education about these new drugs.  My sister Lucy was with me; it’s always great to have another set of ears.  Adriamycin (generic name Doxorubicin) is an antitumor antibiotic.  It’s a vesicant, a chemical that causes extensive tissue damage and blistering if it escapes from the vein.  So it’s given via “push” – the nurse injects it into my port rather than by drip.  The other interesting thing is that the drug is a bright red, and for the next 24 hours my urine will be anywhere from orange to red!  Sort of like eating an entire can of beets…

Cytoxan (generic name cyclophosphamide) is an alkylating agent, most active in the resting phase of the cell.  Carboplatin, which was part of my first chemo protocol is the same type of agent.  Cytoxan is a mustard gas derivative; Carboplatin is a metal salt. The interesting thing about Cytoxan is that it used to be given over 2 hours, then 90 minutes, then an hour, and Velia said that it would be given over 30 minutes.  She said that one of the effects of giving it over 30 minutes is that I could feel sinus pressure and the start of a headache, and if that was the case, that I should ask the nurse to slow down the drip to go over 1 hour.  Lucy was thinking that we should just do the infusion over an hour.  Well, when it came time to the infusion, the nurse said that it would be given over an hour – that their experience is that the patients tolerated the infusion much better when given over an hour, so they’re going back to an hour rather than 30 minutes.

Now that I’ve had time to read the reams of information about these 2 new drugs, one of the slightly distressing things about both of them is a slight risk of developing a blood cancer such as leukemia.  Feels like I can’t win for losing.  But I really can’t worry about it right now.

Dr. K is still really concerned about my potassium level, and this time she wanted to check my magnesium level too.  Still related to my diarrhea issues, my potassium was fine, but my magnesium was incredibly low.  So after the chemo drugs were given, which didn’t take that long, I was given 3 gr of magnesium – which took 3 hours!  So while my infusion started early (9 am) it didn’t end until 3 pm.  Magnesium helps with regulating muscle and nerve function, blood sugar levels, and blood pressure and making protein, bone, and DNA which is important! The premeds included Decadron (a steroid) and Zofran (anti-nausea drug), both of which were given the first 2 treatments as well, but this time Dr. K added Emend, a long acting anti-nausea drug.  I think she REALLY wants me to have a nausea-free couple of weeks.  Now I can only hope that I also have a diarrhea-free couple of weeks, too!

In addition to the possible diarrhea and nausea, these set of drugs can cause mouth sores.  The first regimen does too, but apparently not as much as this set.  I was prescribed a compounded mouthwash to help with the mouth sores.  Obviously, aside from the pain from mouth sores the concern is that it makes it hard to eat, and I have to eat.  And from the Cytoxan, everything may taste metallic, even water.  So flavored waters, water enhancers, G2 will be my friends.  And from the Adriamycin, darkened nail beds.  I guess that’s better than nails falling off…

I got a visit during my infusion from my niece Alex, who’s home for a few days for spring break, and my friend and former colleague Lorrie arrived around 9:30 and stayed with me for the entire infusion.  It was great to spend time with her, and she was gracious enough to buy me lunch (I didn’t think I’d be at the infusion center as long as I was, so I hadn’t packed a lunch) and take me home.  I have such great support locally, and virtually across the country (and world).  Thank you to each and every one of you who have reached out in whatever way you have – cards, gifts, emails, Facebook posts, visits – all of your tremendous support is what helps me get through this very long haul.  With your help, I’ll get through this!  Onward!

Days Like These – February 8, 2015

I’m a normally positive person.  I try to see the good rather than the bad.  Being positive, I’m sure, will help me get through this next year.  Let me tell you, though, that yesterday was not one of those days.

Let’s start with Friday.  My diarrhea did not resolve with the increased dosage of Lomotil that Margaret and I agreed upon, so I sent her a message at 5:30 am letting her know.  I’m sure there was discussion behind the scenes, and eventually Margaret called to let me know they were moving to the next step and prescribing me Opium Tincture. Yep, opium.  My intestines need to be high, I guess, so they’ll stop working so much.  It’s a controlled substance, the kind of drug which needs to be typed out, filled out in triplicate, and cannot be called into a pharmacy.  Typically this type of drug can also only be picked up by the patient, but Oncology must have cleared it with the PAMF pharmacy to let my sister pick it up.  While there, the pharmacist took Chris aside and said, “you know, your sister’s co-pay is $560….”  My pharmacy benefit of my insurance makes me pay for the first $1000 of the year’s prescriptions, and since it’s early in the year, the copay was a whopping $560!

My sister was kind enough to bring the opium tincture to me, and after 2 doses, the diarrhea was better.  Not completely resolved, but better.  We got up on the early side yesterday because we had 3 scheduled appointments to visit memory care facilities for my mom, who is in the later stages of Alzheimer’s.  I managed to throw up 4 times during that stretch, and the minute I got home, the diarrhea was back to what it was.  I was frustrated, tired and felt crappy.  Did I trade one side effect for another??  Will I have diarrhea and/or vomiting for 18 weeks?

I checked with my sister (the doctor) and she said it would be fine to take both Zofran and Compazine, just at alternate times.  So I started that, and made sure I took the opium tincture at regular intervals.  I had a much better night: managed to keep down some rice, then some soup.   I had a great night’s sleep (which has never been my problem), and woke up with energy and feeling pretty okay.  I still have some diarrhea, but no vomiting, which is great.  I also just woke up from a 4 hour nap, so obviously my energy is limited, but I’ll take it.

This weekend one of the animal transport organizations for which I volunteer made it a Warrior Weekend.  The volunteer drivers dressed in pink, the kitties are decked out in pink and all sorts of posts are pink.  I am so honored to have so many thinking of me, cheering me on as kitties make their way to furever homes.  Rock the pink!