Fran's Journal Fran's Journey of Hope

I thought I would waffle on about chemotherapy, for those that are not familiar, or want to have more insight into myjourney. Remember that there are many forms, drugs, treatment regimes and methods, so this is only about my regime and is not reflective of all chemotherapy treatments.

The regime involves one day of IV chemotherapy, followed by 14 days of oral chemotherapy and then 6 rest days. The IV drugs used are Epirubicin, which is an orangey red coloured drug. It makes you pee red urine for the rest of the day! The other one is Oxaliplatin. These are both nasty ones and make me suffer the worst side effects. The oral one is Xeloda.

The Oxaliplatin makes it so that if I ingest anything in the first 9 days that is colder than lukewarm I get pins and needles in my tongue and throat and my throat spasms. It is annoying, cos you pour something at room temperature and it might or might not cause the same. Also when you feel sick on a hot day you want something cool and soothing but you cant, it has to be warm!! With the foul taste that it leaves in the mouth I have found that I can generally taste sweeter things than savoury, but most sweet things and drinks are best cold. Therefore the first 9 days are a BIG chore in regards to nutrition.

The Oxaliplatin also causes pins and needles in your hands and feet if come in contact with anything cold. Therefore I have to wash my hands in warm water and get other people to take things out of the freezer or fridge. Generally I get the things and be very quick about it, but if I have to hold something for a period of time or it is hard to get out I get Mike to do it.

This drug is also thought to be the cause of my intermittent partial loss of sight in my left eye. The Oxaliplaitn is toxic to nerves. Rick is puzzled about the eye because it is only meant to affect small nerves, but for some reason it annoyed my suss left retinal nerve. Thankfully I don’t have permanent visual loss. We will continue to monitor that. Rick is going to reduce the dose to reduce the side effects. Generally the nerve irritation resolves after completion of the chemo, or in my case about 9 days after IV but there can sometimes be residual damage. I think this is the one that you can only have a certain amount of in a lifetime because of the accumulative damage that it can do.

The Epirubicin causes nasty vomiting, nausea, taste problems and hair loss. Since Thursday my hair has been falling out and is starting to look a bit moth eaten. That is frustrating and also a bit of a downer. Every time you wash your hair, dry your hair, rub your head, sleep, you find a lovely mat of hair falling out. I still look reasonable, but am considering shaving it all off rather than looking moth eaten. Especially if it continues to fall out at this rate. It is coming on to summer, so I really don’t need my hair to keep my head warm, but would need to be careful with getting sun burnt.

Before giving the chemotherapy, I am given IV dextrose solution and Dexamethasone (dex) and Navoban. The Dex is a steroid to reduce inflammation, stimulate appetite and to potentate the anti nausea drugs. It is taken for about 4 days after the chemotherapy (chemo). As nausea and anorexia was a big problem with the first cycle I am on it before the next chemo to help reduce symptoms. I think it also is helping at the moment with the cancer pain. As the chemotherapy is killing the cancer cells this causes local irritation and swelling and I have been getting a bit of pain in the liver and stomach. Since being back on the Dex, I have had relatively little pain. Yahoo!I I really don’t want to take this one for a day longer than necessary because it is not good for you and can have permanent side effects.

Navoban is an anti nausea drug. It ? caused my migraine last time. It may have been stress related, but Navoban is known to cause migraines in people who have migraine history. Because of that, Rick is changing that part of the treatment. I am not sure if he is using another drug or just going to increase the Dex, give me lots more IV fluids after the chemo and keep me in hospital to treat any migraines. I have the Navoban orally for a couple of days after chemo, then continue with Zofran, another anti nausea drug for the rest of the cycle.

They have added in Nexium, which is used for reflux and stomach ulcers in hope that that might also help with the nausea, anorexia and stomach pain.

The oral chemo is Xeloda. The dose is very low, so I am not having too many horrid side effects from this one. It caused my mouth ulcers and alters my sense of taste, but is nothing like the other ones. because it has to be taken with food it can become a chore to swallow and keep down, especially in the first week.

I hope this journal did not sound too negative. I don’t want you to turn off from reading what I write because it makes you sad etc. I am hoping that it gives insight and sometimes may even be a source of encouragement. I don’t want to suck you dry, nor am trying to extract pity. I don’t need that. So please be honest with me, or even tell me things that you want to hear about.