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...
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...
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...
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...
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.
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...
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...
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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