FU

I finally had my consultation with Medical Oncology (MedOnc) this past Wednesday.

I have been concerned about this appointment for several weeks.

If you recall from a previous post (Hurry up and wait, Nov.15, 2016) I had been told I would be meeting MedOnc earlier in the process and I had to follow up several times because the appointment was not getting scheduled.

I told my radiation oncologist that I was concerned about interactions between my HIV meds and my chemo treatment. My HIV treatment is complicated as I have a drug resistant virus with many mutations and I am medicated for HIV more than most.

I was told that they deal with HIV+ patients often and it's not new.

Apparently, with anal cancer and this course of treatment, it’s not uncommon for MedOnc not to get involved until a few days before starting treatment. So I waited.

At my last appointment with the radiation oncologist two weeks ago I was told what chemo drugs and anti-nausea medication I would be getting so I started to do some work myself.

I emailed my HIV specialist with the drug information; fluorourcil (also known as 5-fluorouracil and 5-FU) and mitomycin. I will also receive a prescription for prochlorperazine to treat chemotherapy related nausea.

I got my HIV specialist’s out-of-office reply. She was on vacation with her family but she replied saying that she would forward the information to a pharmacologist who specializes in HIV medicine for a consultation.

The night before my MedOnc appointment I hadn’t heard back from my HIV specialist so I followed up with a second email. I got her out-of-office message again. This time she was out of the country in a completely different part of the world at a conference. She replied shortly afterwards saying that she would get an answer by morning.

The email reply from my HIV specialist and the pharmacologist arrived the following morning while I was in my MedOnc appointment. Perfect timing.

There were concerns!

Prochlorperazine, the first choice anti-nausea medication for chemotherapy that they normally use is contract-indicated by one of the ingredients in one of my HIV meds.

A second contraindication was found between mitomycin, one of the chemotherapy drugs, and one of the ingredients in a second HIV med.

With my HIV specialist in a conference session in a different time-zone my MedOnc team contacted the pharmacologist directly while Bruce, my husband, and I waited in the examining room for what seemed like an eternity.

The MedOnc team decided to switch the prochlorperazine to metoclopramide, a second line anti-nausea med. Problem #1 solved.

I left my MedOnc appointment and went to wait, it was a 45 minute wait, at the lab to have my pre-treatment blood work done.

Later my HIV specialist emailed to say that she would like to change the second HIV med containing the contra-indicated ingredient to a newer medication that offered a slightly different formulation of the contra-indicated ingredient. The newer formulation will not interfere with the mitomycin.

In fact, the newer HIV medication is so new that I had to contact my private insurance to make sure it is covered. I also had to contact my pharmacy to make sure they could get the drug by the weekend. Many of my HIV meds are very expensive and pharmacies can’t afford to stock them, so I always order my refills ahead of time.

Later, at home Wednesday evening I got a call from MedOnc to talk about my blood work. I panicked ...

MedOnc was calling to let me know that all my blood results were good. My kidney functions were great and we are good to start treatment on Monday. Panic changed to relief … sort of … now I just have to worry about the cancer treatment.

First thing Thursday morning I contacted my insurer and pharmacist and everything was arranged and my new HIV meds are on the way.

Now I know why fluorouracil is called 5-FU!

I did my “I told you so" dance.

The bottom line is everyone, my HIV team and the MedOnc team, came together, problem solved and found the right solutions. For that I am very proud and thankful, they are a great bunch of people.

Everything that needed to happen, happened. It involved consultations between 4 doctors, a pharmacologist, a receptionist, an insurance representative, a pharmacist, Bruce and … me, trying to coordinate the responses, manage all of the communications (34 emails and 10 phone calls) and to get what I needed.

I am lucky that I have the connections, relationships, knowledge and language to know what I needed and to advocate for myself.

It’s just unfortunate that my voice wasn’t being heard sooner.

I worry about other who might not have the capacity that I have to advocate for themselves.

References

Cancer Care Ontario
www.cancercare.on.ca