Cancer and Lynch Syndrome

Chemo Part Two – Long And Short Term Side-Effects

In my last post, I wrote about what chemo days were like for me. I wanted to expand on that post and talk more about the side-effects. What the different side-effects can be and how it was for me. Remember that everyone’s experience and reaction to the chemo drugs differs. This is just my experience.

Potential Side Effects from Chemo

Before I had my meeting with my oncologist, I had no idea about the range of side effects from the chemo drugs. I knew about the hair and the nausea, like everybody does, but the list of common and less common side effects was longer than I expected.

The one definite side-effect of chemo is hairloss
The one definite side-effect of chemo is hair loss
Very Common Side Effects
  • loss of hair (my oncologist said that this was the only definite side effect)
  • white cell count can become low, which increases the risk of infections
  • lower red cell count, which can cause tiredness and breathlessness
  • low platelet count, associated with bruising and bleeding
  • numbness or tingling of hands and feet
  • nausea and vomiting
  • changes to taste and loss of appetite
  • ‘chemobrain’ problems with concentration and focus
Common Side Effects
  • (usually) temporary changes to kidney functions
  • sore mouth or throat
  • diarrhoea or constipation
  • muscle and joint pain (I still get this)
  • changes to your skin, e.g. itching, dryness, acne
  • nails may change colour and become brittle
  • infections linked to low counts of white blood cells
  • loss of hearing or ringing in the ears (less common)
Rare Side Effects, But Which Can Be Serious
  • allergic reaction – the steroids and anti-histamine you get should help prevent this from happening. I only saw it happen once, but it was scary to witness.
  • drugs leaking outside the vein
  • a reduction in the function of the heart – usually reversible
  • inflammation of the lung – if untreated can be life threating
  • increased risk of blood clots, very rarely these can cause a heart attack or a stroke
  • some chemotherapy drugs can damage the ovaries and lead to an increased risk of infertility and early menopause

I’m also convinced that it made my teeth lose their whiteness. Although, searching this on the internet tells me that there is little current evidence of that. Apparently it could be down to using mouthwashes that contain chlorohexadine. The hospital gave me mouthwashes to help prevent ulcers and soreness of mouth. I didn’t even think to check the ingredients.

For those who want to read more about side effects, I would recommend the NHS and Macmillan websites.

Side Effects I Experienced

I was really lucky because I didn’t have any really horrid side effects. Never did I feel nauseous, although I had a diarrhoea occasionally, and I didn’t lose my appetite. I did, however, change my diet and became physically active, and I think it helped me to feel better during the chemo treatments.

Hair went after the second chemotherapy session
The hair went after the second chemotherapy session
Hair

The first side effect I noticed was the hair thinning. By the way, it’s not just the hair on your head, your eyebrows and eyelashes that go. It’s all hair. Armpit, pubic, leg hair, the lot. The weirdest thing was noticing that even the hair in my nostrils fell out!

Some people cut their hair short in preparation, but I kept it long until it started to fall out in clumps. I noticed it becoming thinner about two weeks after the first chemo session, and then by the time the second session came round, it was time to shave it off.

A friend of mine, Miia, was over from Finland to accompany me for my second treatment and she cut my hair off for me. Then Justin took the clippers to it and shaved it all off.

I was all prepared to rock the bald look, but there was just one small issue. Although it would be more accurate to describe it as lots of small issues.

Spotty Head

Soon after shaving all the hair off, my scalp turned into a breeding ground for spots.

Chemo drugs can cause acne. I guess I was lucky I didn’t get it on my face because when it was on the head, I could cover it up. Justin took a picture of my scalp so I could see it properly and it was disgusting. I will spare you and won’t share that picture. I will just tell you this, I had the whole selection of spot varieties going on. Red heads, yellow heads, black heads, spots in their youth and spots ready to pop.

Luckily, the spots went after a month or so and I could go out in public without a headscarf or a wig. Although I never got along with wigs, I found them hot and itchy, so wore scarves instead.

Low Platelet Count

Throughout the treatments, my red and white blood cell counts remained stable. They were lower than normal, but not alarmingly so and stable.

Instead, I had trouble with the platelets. When you have a low platelet count, it can cause bruising and bleeding and, in the worst-case scenario, internal bleeding which can be extremely dangerous.

Twice we had to delay my treatments by a week because my platelet counts got so low. Luckily, both times they recovered enough to allow the treatments to continue. My platelet count is still at the bottom end of the normal range, but then my dad tells me he has always had low platelet counts.

Exercise helps to combat side-effects of chemotherapy
Yoga helped then and still helps to deal with the stiffness in joints I have been left with
Weird Feeling In My Legs

Experiencing numbness or tingling in hands and feet is in the side effects. However, I wouldn’t describe the sensation I got in my legs as tingling. It was a lot weirder.

After my first session, I spoke to my aunt, who had breast cancer and had to have chemo. She asked me if I’d had a funny feeling in my legs. I hadn’t yet, but when I did, I knew exactly what she meant.

It was such a strange feeling. My legs felt restless, and I was often more comfortable standing or walking than sitting down. I also used to get this feeling that someone was pinching me inside the skin. The pinching wasn’t just in my legs. It could happen all over my body.

These side effects always appeared a day or two after a session and then disappeared within a week.

Breathlessness

I used to experience breathlessness for a few days after each session. It wasn’t anything serious. I never really noticed it doing normal activities. I only noticed it when I went for a morning run.

It got more noticeable as I processed through the sessions. If my memory serves me right, it was after the third session when I had to switch from running to walking for a few days after the chemotherapy. The breathlessness was because the red blood cell count dropped immediately after each session, but then recovered enough for the breathlessness to go away.

Running helped me hugely through chemo and still does together with cycling.
Running helped me hugely through chemo and still does together with cycling.
Early Menopause

Chemotherapy can cause an early menopause. I was going into it anyway, because of the radical hysterectomy. With early menopause, came hot flushes and interrupted sleep when I would wake up drenched in sweat.

I don’t think my moods have become much more changeable because of the early menopause. Maybe it’s because I never had huge mood changes when I still had my periods.

I have noticed I get emotional more easily, though, like when watching TV. For example, yesterday, I got a bit tearful watching Made In Chelsea. I know! In my defence, it was a scene where Gareth was talking about his mother having Alzheimer’s. 

Other than getting teary-eyed over TV moments, my hot flushes have reduced a lot in frequency and strength in the last year. Having said that, I think they will be here for a while yet.

The best thing about early menopause. No periods! And I am LOVING life without them.

Chemobrain

This is definitely a thing. I’m not sure if has been a direct result of the chemo drugs or a combination of things, like lack of sleep.

As I went from one treatment to the next, I noticed how it became harder to focus and I would forget things. For example, one day coming back from the hospital after a blood test (I had my bloods checked prior to the treatment to check it could go ahead), I bought a bag of peas in their shells.

I was snacking on these peas as I walked home from the hospital, but I’m sure I didn’t eat them all as it was a big bag. Anyway, a few days later I suddenly remembered the peas. But where had I put them? I couldn’t find them anywhere in the flat.

To this day, I don’t know what happened to the rest of the peas, but I’m sure I didn’t eat them all.

What About Long Term Side Effects From Chemo

Hair growth two, three and four months after chemo finished.
Hair growth two, three and four months after chemotherapy finished.

Some side effects can last for a long time after chemotherapy has finished. My hair has long since come back. I noticed it growing back about a month after the final chemo session. It can come back different from before. Mine has come back a lot darker and thicker than it used to be. My wish was for chemo curls, but it wasn’t meant to happen. But I don’t mind, I’m glad it came back.

I already mentioned that my platelet counts have since gone up, and I haven’t experienced the weird sensations in my legs since the end of chemo. I also haven’t had any more breathlessness.

What I still have is aching in my muscles and joints. Especially in the morning or if I have been sitting down for a long time. Some chemo drugs, including Paclitaxel, can cause joint pain. According to Cancer.Net sometimes the joint pain can be a late effect occurring months or even years after treatments ended.

I’m hoping that my joint and muscle aches go away eventually and being physically active helps a lot.

Menopause is still here, but luckily with reduced symptoms. I also still have the chemobrain, making me more forgetful and distracted. I guess that could be age too, but I prefer to blame it on the chemobrain.

***

I can be so grateful that I didn’t get any really horrible side effects that would have severely affected the quality of my life during the chemo treatments. Radiotherapy hit me harder than chemo, but I will get to that in a later post.

I am also grateful that other than the joint and muscle pains, early menopause and forgetfulness, I don’t have any serious long-term side effects from the chemotherapy.

If you have questions about chemotherapy, don’t hesitate to ask, and I will do my best to answer.

I know that everyone’s time is precious, so thank you for being here and reading the post. 

Until next time!

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