When I knew I was going to have Doxorubicin chemotherapy for my sarcoma (aka the Alien) I tried to find out as much as I could. The booklet I was given contained a huge list of side effects and the reassurance that not all of them happen. I couldn’t find anything that said what proportion of patients get which side effects and when.
Looking back after having finished the first cycle I don’t think the side effect were as bad as I expected. I just hope it hurt the Alien more than it hurt me.
I kept a diary and devised a scoring system.
Here are my ratings
In total I had about 5 days when I was mainly Duracell bunny.
Day 4 I was definitely steamrollered. Post chemo and coming off the dexamethasone.
Day 14/15. Blue bunny days because of febrile neutropaenia and its treatment.
Most other days were happy bunny days with episodes of blue bunny usually because I had done too much.
So which side effects caused me most problems?
If you asked a person in the street to say what were the main side-effects from chemotherapy I think nausea and vomiting would be top of their list. When I was a medical student the oncologist told us the story of a patient he had looked after. In those days the doctors gave the chemotherapy injections and at every visit his patient had vomited and continued to do so for several days. They persevered with the course of chemo and it was successful. Two years later the oncologist walked into a train carriage and recognised his old the patient. The patient looked up, recognised the oncologist…and vomited.
But vomiting is now managed much better. And the secret seems to be prevention. If you wait until nausea starts it is much more difficult to control. And the range of drugs has changed with research showing that a lot of nausea is mediated from the brain rather than the stomach. Which is why it can be triggered by a conditioned reflex like the man on the train. And for a lot of these advances we have to thank the ferret. Yes…that’s right, the ferret. As if it is not bad enough being raced at country fairs and being put down people’s trousers for a lark, it turns out the ferret used to be used as a model for nausea. In most animals you can’t tell whether they feel sick until they are…usually over your feet. Ferrets show a particular posture when the feel sick so can be used to test anti-nausea drugs. Thank you you, poor, poor ferret.
The only downside of the drugs controlling nausea is that I think the main side effects I had in the first few days were from the metoclopramide and the dexamethasone rather than from the Doxorubicin. Insomnia and sedation are a fairly cruel combination but if that’s what is needed to avoid the nausea that’s fine by me.
By day 6 or 7 the chemotherapy had started its work on dividing cells. By and large I was expecting the bits to be affected were the lining of my gut from top (mouth) to bottom (bottom), my blood and bone marrow and my hair. Mouth ulcers were a nuisance, especially as I had them on my lips so any hot food or drink was painful. Mouthwash, soft tooth brush, Manuka honey and pineapple kept it reasonable. My main problem was my oesophagus. I had pre-existing problems with stomach erosions so I wasn’t surprised at the stomach ache but the gullet pain was a surprise and was pretty intense for a day or two.
I tried the following
I am not sure if any of these helped and I was at my worst one evening when I had been invited to supper with friends. I resigned myself to eating very little and being picky. I had been avoiding alcohol but when our friends opened a bottle of Prosecco I decided a half glass wouldn’t do any harm. As I drank it my oesophageal pain disappeared…completely. And never came back with the same severity. I wonder if my GP would put Prosecco on my repeat prescription list.
As I said, problems with the GI tract can be from top to bottom. When it comes down to the latter constipation and diarrhoea obviously don’t help but let’s just say that extra soft loo paper is now on the shopping list.
Once the oesophagitis died down on about day 9 I felt a lot better. But by day 10 despite avoiding crowds and screening visitors for infection I realised I had got a cold and cough. At times I had felt like my husband had me under house arrest he was so worried about me catching infections. But it seemed I had caught an ordinary cold and cough and I didn’t have a temperature. By day 14 I was coughing a lot and rang the acute oncology advice number. They suggested I come in. Just as we were leaving I took my temperature again and it was 39. We came in – fast. I was assessed efficiently and rapidly and found I was profoundly neutropaenic. So, I was filled up with IV antibiotics and subcutaneous granulocyte colony stimulating factor (g csf) to increase the neutrophils and went back home. I didn’t feel particularly unwell and even managed a dog walk that afternoon. But by the evening I felt like someone had broken my pelvis and tried to remove my head. I had been warned g csf could give bone pain and headache but this was a whole new experience. I dosed myself up with paracetomol and antihistamines and put the electric blanket on full and went to bed. By the morning I felt a lot better. And another check at the hospital showed my neutrophils were back to normal. Powerful stuff……and I guess I will have to have more during the next cycle.
At this stage I was surprised that not only did I have a full head of hair but when I brushed I wasn’t shedding at all. Boy, did that situation change fast. Day 17 I suddenly lost handfuls of hair. Showering was a horrible tanglement…all over me, all over the walls of the shower and in the plug hole. I would have shaved it off but my husband wasn’t keen. Also, my scalp was really sore so shaving would be painful. As it is by day 20 it has virtually all gone. I am finding new ways to tie scarves and I am wearing hats. But I find I am always the wrong temperature. I need a woolly hat outside but it is too hot inside so I am constantly chopping and changing. At the moment I am not bothering about a wig but maybe later I will. And it is amazing how quickly I have got used to being hairless. Apart from when I am cold the hats are definitely put on for others and not for myself.
So I am now nearing my second dose of Doxorubicin. This time I don’t have to travel so far but the new team will probably tweak things especially in view of my episode of neutropaenia. And the big question is…how was it for the Alien? Hopefully really horrible…problem is I can feel it quite easily and it is definitely still there. I try and convince myself it is smaller but until my next scan I won’t be sure.
Seconds away…round 2.
