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Lymphoma

Blood cell counts and infection risk

One of the main side effects of chemotherapy is damage to the bone marrow, which produces blood cells. A shortage of red cells (anaemia) causes tiredness and headaches. A shortage of a type of white blood cell called neutrophils (neutropenia) increases the risk of infection. Blood is taken between treatments to check that the cell counts have recovered sufficiently. Several people told us one or more of their treatments had been postponed to allow the cells longer to recover so they could withstand the next dose.

 

Blood was taken at his GP's surgery the day before each chemotherapy treatment was scheduled; at...

Blood was taken at his GP's surgery the day before each chemotherapy treatment was scheduled; at...

Age at interview: 58
Sex: Male
Age at diagnosis: 49
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But the process is the same where you go in, by and large you get the blood test first of all, then discussion with the doctor on how you're feeling and what your blood cells are like and how things are going generally. I got into the routine of getting my bloods taken at the surgery in the village the day before, so that saved maybe an hour-and-a-half getting blood results on the Tuesday morning. 

So that was for eight cycles, provided your blood counts were up, and there was at least the two occasions where I had to be deferred, one because my red count was far too low, and the second one because the neutrophils were falling too low below their recommended level for chemotherapy. I also had a chest infection apparently as a result of pneumonia I had just under a year ago now, so I spent last Christmas in hospital as well with pneumonia. But it came back in the April which deferred the start of chemotherapy, and it came back in August when they stopped chemotherapy while they dealt with the infection. So what should've been sixteen lots of chemotherapy took five-and-a-half months to give to me.

Some of the people we interviewed were given blood transfusions or erythropoetin to stimulate production of red cells (erythropoetin is now rarely used because of concerns that it may also stimulate lymphoma cells). A woman was at first told that she could not get erythropoetin on the NHS but eventually she was given weekly doses which made her feel much better. Others had injections of granulocyte colony-stimulating factor (GCSF) to stimulate production of neutrophils. Some people learned to inject themselves, others had family members taught how to do it. A common side effect of GCSF was aching bones, but one woman had so much fluid retention that her legs swelled to 'gargantuan proportions'. Another got worried about a strange feeling of 'hollowness' in her head, but then the hospital reassured her. A woman said she needed to be given lots of blood cells and platelets throughout her treatment, which eventually led her doctors to decide to remove her spleen as they thought it was absorbing all her blood products. After eight courses of different chemotherapies, this operation finally put her into remission.

 

Had a blood transfusion after five chemotherapy treatments because his red blood cell count had...

Had a blood transfusion after five chemotherapy treatments because his red blood cell count had...

Age at interview: 53
Sex: Male
Age at diagnosis: 42
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So as you go through these sessions of chemotherapy the red blood count goes down because of what you're having. Now the red, as the red blood count goes down you get more and more tired. Before each session of chemotherapy they check your red and white cells to see what your count is. If the white cells go down too low it means you're too likely to get an infection and they won't do the treatment, they put it off for a week. I actually went through each treatment exactly on time so I never had to stop the treatment, but after about five treatments I did have to have a blood transfusion because my blood count had got below ten, I think it was 9 point something, the red blood count, so they had to give me a blood transfusion, which takes about four or five hours, you lie on a hospital bed and they put this blood into you and when you come out of there you feel a lot better, you feel a lot more energy and it's actually, you just feel better all round. 

 

Was injecting himself with Granulocyte Colony Stimulating Factor to boost his neutrophils between...

Was injecting himself with Granulocyte Colony Stimulating Factor to boost his neutrophils between...

Age at interview: 45
Sex: Male
Age at diagnosis: 45
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I had blood tests before a treatment to make sure my white count is up to scratch. The first treatment actually dropped my white cell count quite low, low enough for me to have to take antibiotics and anti-fungals to actually stop myself getting seriously ill. And it took another week for my bone marrow to actually recover so they could give me another treatment. And I was getting a bit worried by this because I couldn't afford to be off work for more than six months because that was the insurance cover that I had available to actually pay for my work to be done for me in my absence. 

And so what they're doing now for me is giving me something called granulocyte stimulating factor, which is an injection, it's exactly like having insulin injected, and I'm able to do it myself, being a doctor, but most people I think go down to their practice nurse and have an injection. And this is given at about ten days after treatment so that you can boost the levels of your white blood cells and then check them, make sure that you're over the magic 1.5, which means that they can give you another treatment without sending them dangerously low. And so that's working a treat. I was having three lots and that's sent my white count up to amazing 5.5, so as the stuff is vastly expensive they've cut me down to two lots and that keeps it hovering around the two mark, but so far I'm doing very well.

People commonly said they tried to eat healthily or take exercise in an attempt to counter bone marrow damage and reduce their risk of infection; some took vitamin supplements, or were advised to eat lots of broccoli and drink Guinness for iron. Most said that during treatment they avoided people who had coughs and colds, going to public places or travelling on public transport. Due to the risk of infection it is best to avoid people who have sore throats, colds, flu, diarrhoea and vomiting, or other kinds of infection, such as chickenpox.  A woman started using face masks and said that other people tended to give her a wide berth when she wore them, which made shopping in crowds much easier.

 

He takes vitamin C every day to avoid infection, phones his GP for antibiotics if he feels a sore...

He takes vitamin C every day to avoid infection, phones his GP for antibiotics if he feels a sore...

Age at interview: 65
Sex: Male
Age at diagnosis: 52
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Nowadays if I get a sore throat coming, and sometimes I do as part of a cold, I immediately go to the doctor and get some antibiotics, I don't even have to go and see him, I can ring him up and say, 'I've got a sore throat, can I have some antibiotics?' Because he knows that if he doesn't give them to me I'm going to end up with a very sore throat, and so get it early, kill it and it's OK. I get the cold the same as, but I don't get the sore throat, which on the occasions I have left it have been pretty rotten.

So do you have to careful in general not to pick up infections?

People are more conscious of this than I am. My wife, for instance, was with somebody who had mumps and was infectious a couple of nights ago and, you know, we've spoken and waved since then, that's about it. She tries to protect me, she's very good that way. And the children also have been good about it, you know, if the youngsters have got coughs or colds or stuff like that.

And the other thing I do take is 1000 milligrams of vitamin C every day basically to try and stimulate the'. 

Immune system?

Immune system, yeah. And if I can keep that active then'

Do you think that's effective?

I don't want to stop taking it and find out if you don't mind. I guess it's a question of belief. Yes I do think it helps, I don't get as many colds as I used to, although of course there's reduced resistance, I take the flu jab anyway every year, but I tend not to get colds and, you know, apart from the urinary infection, which is probably because I've been lying down a lot, I've been reasonably fit.

 

To reduce her risk of catching infections she stopped going out, and instead of going to the...

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To reduce her risk of catching infections she stopped going out, and instead of going to the...

Age at interview: 67
Sex: Female
Age at diagnosis: 67
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I did decide early on that to minimise the risk of infection I would stop going to theatre, cinema. I go to school normally a couple of times a week to listen to children reading, and I decided I wouldn't do that throughout my treatment, and decided to stop travelling on buses. I am a rather independent person, I choose not to drive, I can get around quite happily with public transport or my bike, but although I'm physically capable of going to the hospital on the bus for my treatment, I decided because people have been very kind and wanted to help, to accept offers of a lift from them to and from the hospital to save me going on the bus, where I would be exposed to the risk of infection. 

I still go shopping but it's quite a small supermarket we have and I go at the quiet times. And I like to go out, walk into town, I invariably see someone I know and sometimes I bump into someone in Waitrose, I do tend to give people wide berths and I'm listening for coughs and sniffles. 

Some people were advised to keep their homes and household linen very clean, to wash their hands a lot, wear gloves when gardening, and not to go to the dentist. A woman had an emergency tooth extraction and expected to get an infection but didn't. Other people were told to temporarily adopt a 'neutropenic' or 'clean' diet that avoided raw and undercooked foods. This was hard for people who usually ate a lot of fruit, salads and dairy produce - one woman said it was as though they had crossed all of her favourite foods off the list. One woman described having medication delivered into her lungs via a nebuliser to prevent her from catching a serious chest infection after her treatment.

 

Moved home in order to get a certain treatment and used a friend-of-a-friend, not only to buy her...

Moved home in order to get a certain treatment and used a friend-of-a-friend, not only to buy her...

Age at interview: 61
Sex: Female
Age at diagnosis: 60
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Of course, one of the things I hadn't bargained for, because I didn't know until I got to the teaching hospital city that I needed these, was they were saying, 'Have a clean towel every day. Have a clean flannel regularly. Clean tea towel regularly' so you know, I'd brought two tea towels, 'one to wash and one to wear', and that was no good because I was supposed to be having a completely sort of hygienic regime so she had to go out, this friend-of-a-friend, had to go out, not only and buy me all the basic, staple food, but towels and tea towels and flannels and everything so she was absolutely wonderful.

There was something else I was going to say about that regime. Oh yes, that was the good thing actually about having moved house, that, because everything was new, all the rules that came from this rule book that they gave me, I could sort of attach in my memory, if you see what I mean, to the new kitchen and the new bathroom and the new hall and so on, so it made it much easier to remember. I think I would have found it fiendishly difficult to alter the habits of a lifetime in my home environment, so that was actually an advantage. 

 

Describes the 'neutropenic diet' that he had to follow for 2 months after having a stem cell...

Describes the 'neutropenic diet' that he had to follow for 2 months after having a stem cell...

Age at interview: 53
Sex: Male
Age at diagnosis: 47
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Yes I was on a neutropenic diet for two months after coming out of hospital. The neutropenic diet meant that tins and bottles should be wiped with a Steret [sterile swab] before opening, uncooked food should be cooked to at least 70 degrees before serving. Once packaged foods and milk had been opened they must be used within 24 hours, tap water must be boiled, bread should be toasted, cold meats and cheese bought sliced to order or bought unwrapped should be avoided. Salads and raw vegetables should be avoided. Fresh fruit that cannot be skinned should be avoided, apples should be peeled, and things like that. So that went on for two months. 

And were you still vulnerable to infection when you came home?

Yes I was, and I was on the neutropenic diet for two months.

That sounds like a terrible fag, how did you and your wife cope with that?

Once you got into the routine it was alright but, yes, it was a bit of a bind.

Last reviewed February 2016.

Last updated February 2016.


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