Life on Letrozole After Breast Cancer

letrozoleAfter completion of my chemotherapy and just as my radiotherapy started I required to start taking letrozole: just one 2.5mg tablet per day. A 2.5mg tablet each day for 5 years. This is because my breast cancer wasa type that needs the hormone oestrogen to grow. In women who have been through the menopause, the main source of oestrogen is through the change of sex hormones called androgens into oestrogen. An enzyme called ‘aromatase’ is needed for this change to occur. Letrozole works by inhibiting (or blocking) this enzyme. This reduces the amount of oestrogen in your body, which slows the growth of the cancer cells, should they recur. It is my fervent hope that they will not.

I am ashamed to say that I never read the information given with medication, although I know I should. The manufacturer’s leaflet will give more information about letrozole and a full list of the side effects which may be experienced from taking it. I have to take other tablets daily as well. So I take one 2.5 mg tablet of letrozole each morning with my other medication, although you may take letrozole at whatever time of day you find easiest to remember, but try to take your doses at the same time each day. This will helps to avoid missing any doses. You can take the tablets before or after your meals. If you forget to take a dose, take it as soon as you remember. If you do not remember until the following day, skip the missed dose. Do not take two doses together to make up for a forgotten dose. I suppose one tablet out of 5 years will not make much difference.

However, along with their useful effects, most medicines can cause unwanted side effects although not everyone breast-cancerexperiences them. If you have read other articles in this blog, you will realise, that my primary mind set is always that these things cannot happen to me. Of course, sometimes they can and they do. That is just life. Also, because I do not read the manufacturers leaflets, I did not know the side effects to expect. However, Letrozole has a raft of side effects and I seem to have been blessed with most of them. The common side effects are as follows:

1) Hot flushes and sweating: yes, I get this one! I thought it was my time of life, but no, I owe this joy to Letrozole so I try to keep cool by wearing light, airy clothes or in winter, I wear layers, so I can take them off as required.
2) Headache, muscle or joint pain: oh wow! I have this one in spades. You can ask your doctor or pharmacist to recommend a suitable painkiller but I do not like to take any more tablets than I have to, so I try to manage the pain with rest, hot water bottles or ignoring it before I give in to the painkillers. The dull ache of the joint and pain is a persistent, nagging pain that drains the drive and strength out of me. It is inescapable.
3) Feeling tired, weak or dizzy: Oh, you guessed, I find this side effect really, really debilitating. I simply cannot do all that I did before I got ill. Some days I cannot get up, some days I have to take a nap, sometimes I just cannot move. I get so indescribably weary and tired. I get cross with myself and irritated but it does not explain this side effect to say that I get tired. The tiredness makes me bone weary. My limbs feel heavy, my concentration is affected. My eyes cannot stay open. At other times I cannot sleep at night, so that makes me tired too. I do not drive or use tools or machines until I feel fit enough to do that.
4) Feeling or being sick, indigestion, abdominal pain: Hurrah! I do not get this one! I stick to simple meals, generally avoid rich or spicy foods and I am very careful about my diet.
5) Constipation: I occasionally suffer from this one but I try to eat a well-balanced diet and drink several glasses of water each day.I also drink copious amounts of tea, mostly English Breakfast tea, sometimes Earl Grey.
6) Diarrhoea: Nope, I do not get this one: if you do, remember to drink plenty of water to replace the lost fluids.
7) Appetite changes, weight changes, feeling depressed, hair loss, skin rash, swollen legs or feet, vaginal bleeding: I am blessed with some of these, the most immediately obvious is that my hair has become very thin. Sometimes I wear a hat because my head gets cold, my hairdresser is a magician and always makes me look and feel like a million dollars. The other one of these side effects that I have to cope with is depression. I have suffered depressionfrom depression for many years any way and now it is reasonably well controlled. It is just difficult having another potential source of that mental health problem.
8) High blood levels of cholesterol or high blood pressure. I do not suffer from either of these. I am lucky in that my blood pressure sits fairly low anyway and my doctor also arranges for me to regular have tests to check that these side effects are not rearing their ugly heads.

As I suffer with so many side effects of Letrozole, I have been offered the opportunity to change to another tablet. However, I have declined to do so. I know what the side effects of Letrozole are and I can cope with them, more importantly my long suffering husband knows what they are and he can also cope with them. So for the remainder of the 5 year period, I will cope and I will be grateful that I am being successfully treated for breast cancer. I am a lucky woman.

Valerie Penny

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Physical Effects of Chemotherapy

It is hard to imagine that I am already more than half way through my course of chemotherapy and I have now moved from the docetaxel to FEC.  

FEC is named after the initials of the chemotherapy drugs used, which are:

  • fluorouracil which is also known as 5FU
  • epirubicin
  • cyclophosphamide

FEC treatment can usually be given to you as a day patient. Before you start treatment, you’ll need to have a blood test on the same day or a day or two beforehand. You’ll also be seen by a doctor, specialist nurse or pharmacist. If the results of your blood test are normal, the pharmacy will prepare your chemotherapy drugs. All of this may take a couple of hours.  The first time I went for my FEC, though, the hospital was installing a new computer system, so it was over 5 hours before my therapy reached the ward.  Isn’t progress wonderful?!

The nurse will then insert a thin, flexible tube (cannula) into a vein in your hand or arm. You may find this uncomfortable or a little painful, but it shouldn’t take long. Some people have their chemotherapy given through a thin, plastic tube that is inserted under the skin and into a vein near the collarbone. This is what I have, a Hickman line.  A line can also be  passed through a vein in the crook of your arm instead. This is Known as a PICC line.

You’ll be given some anti-sickness (anti-emetic) drugs as tablets, or more usually by injection through the cannula, which is often connected to a drip (infusion).

The chemotherapy drugs are then given separately:

  • Epirubicin (a red fluid) is given as an injection along with a drip (infusion) of salt water (saline) into your cannula or line.
  • 5FU (a colourless fluid) is given in the same way.
  • Cyclophosphamide (a colourless fluid) can be given either as an infusion or as an injection alongside a drip of saline.

The chemotherapy will usually take about an hour, but it may take longer.

Although the epirubicin is often given first, the order in which the drugs are given won’t alter their effectiveness.

If you’re having your treatment as a day patient you can then go home, and the cannula will be removed before you go. If you have a central line or PICC line it will usually stay in place, ready for the next cycle of your chemotherapy. You’ll be shown how to look after the line or the District Nurse will call in once a week to maintain it for you.

You’ll be given a supply of anti-sickness drugs to take home with you. It is important to take these regularly as directed by your doctor. I was advised to start them right away even if I wasn’t feeling sick. This is because some anti-sickness drugs are much better at preventing sickness than stopping it once it starts.

I have found, so far that the side effects of the FEC are not so debilitating as the docetaxel, but they do exist.

I am not mentally tired, but I do get physically tired.  I am not a patient patient, so when I have some energy I tend to charge around and do as much as I can until I can do no more. It is then I often need a rest or sometimes even an afternoon nap. I should really pace myself, but I am not good at that and really feel excited when I feel I have the energy to accomplish something. I go at it until I finish, or until I run out of energy whichever comes first.

My urine is very dark and smelly but that is not as much of a problem as the constipation. That makes me feel bloated and sore, so laxatives are the order of the day!

My eating is also a bit unpredictable. There are times when I am not hungry and other periods when I graze constantly.  I also find myself craving salt, fruit, vegetables and strong flavours.  I fear I am the only cancer patient who has not lost weight, but the consultant tells me he does not want me to lose weight so he is happy. That makes one of us.

One of the most noticeable side-effects that continues to have a daily effect on my life is hair loss. My hairdresser came to the house when my hair began to come out.  She took my hair down to a number 1. This stopped it coming out all over my pillow and also stopped it clogging the drains when I had a shower!  The most obvious thing is that sometimes my head gets cold! I am also quite self-conscious of not having much hair. It has still not come out completely, but it is very thin on top (although it seems to be growing a the back).  I do have a wig but only wear it if we have visitors or I am going out. Otherwise I mix it up with my “wee hair”, my bandanas and my beanie hats.  My husband is wonderful and so supportive. He had his hair cut to a number 1 too. So now he has the same hair cut as me. The only reason for this is solidarity.  I appreciate it.

One of the things my cancer nurse told me to expect was losing the hair all over my body, not just on my head. This has saved me time and effort shaving my legs! However I have also lost all the hairs in my nose so it feels like it is permanently dripping.  I have mucus running down the back of my throat all the time and I seem to be constantly sniffing or wiping my nose. I am very self-conscious of this.

Another most unpleasant side-effects of the FEC is nausea.  It also causes vomiting in some people. That is even more unpleasant. One of my friends who had already had 2 courses of FEC while I was undergoing treatment with the docetaxel warned me about this and told me the hospital would give me anti-sickness tablets. My friend advised me to start taking them straight away.  The nurses in the oncology ward echoed this advice and I took it. I was glad I did because I did feel a bit nauseous, but never got sick so far.  I am glad of this.  I hate being sick. (Nobody enjoys it, but I really hate it.)

So there you have it, my physical side-effects with the new drugs I am being treated with are not as bad as I had feared, but I was on 21 tablets a day for the first few days after my chemo therapy!  14 of those were for the chemo side effects and the other 7 were my regular ones for my under-active thyroid and my depression. What a life! I plan to live it for as long as I can. 

Valerie Penny

Symptoms of the Cure for Breast Cancer

My cancer is breast cancer but was found early and surgery (hopefully) removed the tumour.  As a result of that I had had no symptoms that I noticed from my disease. Looking back, there were several signs that I ignored. The discharge from my right nipple and the least exertion made me very tired. Still, It never occurred to me that I had cancer. That would not happen to me. It could happen to other people, but not to me. It is therefore, I am told, unsurprising that, when I started having symptoms from the cure, I became quite resentful of that.  The flowers friends and family continued to send made the long days at home more easily endured.    Visits phone calls, texts and emails helped too. I like to feel part of the world and community, even if I don’t get out much.  I am so very lucky to have that network of support and love and prayer: I do not take any of that for granted.  

I have, however, taken my good digestive system and ability to sleep well, whatever the circumstances, for granted for many years.  When the side effects to my chemotherapy included constipation that was so bad it made me scream followed, a few days later, by constipation that made me weep, I felt miserable.  I also have had difficulty getting to sleep and staying asleep during periods of my chemotherapy cycle. I am not sure if that is caused by stress or by the treatment. Whatever caused it, I found it unusual and depressing.

I also find that food tastes a bit tinny this is quite unnerving. I find myself drawn to sweet and salty foods.  I also find that my eating habits have changed. I am finding myself eating little and often (or sometimes just little) rather than 3 square meals a day.

Another distressing side effect has been sudden, sometimes lengthy, nosebleeds. That has been quite upsetting for me and for my husband.  

I have found myself to be tired and lethargic. This has been compounded by pains in my joints, severe cramps in all the large muscle masses of my body and also tender muscles. These have required painkillers, easing with hot water bottles and comfort from cushions. I like to keep busy, with work, hobbies, interests and pursuits with family and friends. When I find myself so tired and my energy at a premium, I have just to get used to doing what I can when I can and not set my targets too high. That results in frustration and low mood. It is difficult to cope with this and having to take naps in the afternoon or sleeping longer into the morning. Still, I will just have to get used to my current limitations while my treatment is ongoing.

Late into my three week cycle two other side effects came to light.

The first of these was the dreaded hair thinning and subsequently hair loss. I had really not thought this would upset me too much as I have had thin hair due to an under-active thyroid. However, I did find it distressing and took up the offer of a wig financed through the NHS and am grateful for it.  It looks very realistic and is comfortable to wear.  I went to a local hairdresser and wig provider, Amanda who operates from Francis Hair and Beauty Salon at 29-31 Bridge Street, Galston, Ayrshire, Scotland.    I was very nervous and found the visits quite stressful. However, I need not have done. The staff were all so very kind and helpful and Amanda is knowledgeable. There were wigs to choose from in stock. She did, however, advise that she order up another couple of wigs so that I had an even larger choice to select from. as my hair loss was not so serious at this point, I took her advice to wait and make a full choice.

The second of the later side-effects was the development of a nasty chemical burn on my left hand. This, combined with the bad bruising caused by the use of a cannula to administer the chemotherapy, has resulted in a very sore and multi-coloured left hand.  The installation of a hickman line for future chemotherapies has been advised. Doubtless this will come.   I am not looking forward to yet another operation, but must be advised by the oncologist.

There is no doubt that many of the troublesome side effects do not become obvious for two or three days after the chemo has been administered and they do lessen towards the end of the three week cycle. Just about the time for the whole thing to start all over again!

Valerie Penny

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