Chemotherapy

[RedRosie]

Could any MumsNetters offer some advice? I am sure that some of you must have been through this, have a family member who has, or work in the heathcare professions.

My DH is about to start high-dose chemotherapy in order to try and put his cancer into remission. We should get more information this week about the exact regime, but have been told that it is likely to be monthly treatment over a period of about six months initially.

It is not a cancer that can be cured, but rather one of remission and relapse with the remission periods getting shorter/closer together over time.

Is there anything we can do to prepare? I am not a fan of "alternative" medicine per se, but was thinking of nutritional or other evidence-based ways to make things easier for him.

Are there other things I should be thinking of and preparing for? Things I should know that may not be in the standard leaflets and advice they give out?

Thank you.

PS: Would it be possible (or welcome) to have a topic heading in Health for cancer?

Rosie, firstly, I'm very sorry to hear your husband is unwell. I had chemotherapy last year, so I'll try and remember a few tips for you.

1.Hospital will give you tips on avoiding infection, generally my DH was just a bit more vigilant than usual with the cleaning, esp. in the kitchen, and used my own towels etc. Just as a precaution. Any signs of infection, temperature etc. contact hospital straight away.

2 Don't be afraid to make full use of your chemo unit/ cancer unit at the hospital. Any worries about Side effects or anything get in touch with them.

3 They'll give you dietary info. But basically he may feel sick, weak, not hungry. So little bits of what he does fancy, plenty of drinks, try to increase the calories in the food he does eat (things like full fat milk, butter in potato etc.)
He will get to know what things he can eat - the main problem is you get a strange taste in your mouth with chemo - sometimes stronger tasting things, or citrus tastes can be nice.

4 He'll discover how the chemo effects him (it varies from person to person and with different types) so he be able to predict his 'good' days, and when he's going to feel a bit wiped out.

When I was really exhausted - I just went to bed, and listened to audiobooks.

5 skin can get quite dry and rather 'soft' , so a nice moisturiser, and use baby products in the bath and baby shampoo for head.
I also used a baby's toothbrush and childrens toothpaste - they are more gentle on your gums and you often get a sore mouth.

I have to go out for a bit, - and I may well have forgotten some things, but will return to thread later.

And yes I'm sure a cancer thread, or a cancer carers thread would be a good idea - lots of people on here unfortunately affected by this bugger of an illness. Best wishes to you and DH

Sorry - also forgot constipation can be a problem with steroids and anti sickness drugs, so stock up on things like prune juice, dried apricots, whatever works . And if it does become a problem get them to give him some movicol or something that acts as a softener, rather than senna which I found much too powerful and gives you cramps.
also be prepared for steroids to affect mood and make him feel a bit low or crabby.

Sorry if this is things you already know - wasn't sure what treatment he has already had.

Thank you so much. That is really good, practical information. I hope that you are doing well mow.

My DH is very brave. Braver than me certainly. My way of coping is to be as practical as possible. And as prepared as I can be.

None of it is fair.

So sorry to hear about your DH, cancer is a bitch. Most women in my family have had chemo and they have all said they've had mouth ulcers as a side effect. A good remedy is aloe vera juice- take it every day and it should help.

My mum has secondary breast cancer, it's in her bones, so she is in a similar position to your DH I think, with the cancer never going completely just differebt treatments to try and keep it in remission. As far as I understand there are different types of chemo, all with different side effects, but your consultant/nurse/dr, whoever your contact is should give you more info.

Thank you debka, and again KurriKurri. My DH is determined to be at work as much as possible during treatment.

I am worried that he won't be able to do as much as he thinks. But its helping him to think this way.

My husbands been fighting cancer for 19months now but his chemo treatment is daily and at home so very different, so not much on the practical support but here if you need a chat. I did suggest a cancer topic on health a while back, wonder if MN could do it, I will ask.
Sometimes it so hard t stand by and watch, knowing we cant do anything to help them apart from the practical stuff. Do you have a macmillian nurse? We have 2 and they are great, if you have any little questions they are just at the end of the phone.

Hope your holding up ok and your DH sounds strong too.

I know we dont normally but ((hugs))

Thanks. We do have a MacMillan nurse who is very nice. But its early days, and my DH seems not - at the moment anyway - to want too much detail or contact with her.

I think a cancer topic would be helpful. And people who wanted to avoid it (I know some people prefer not to talk about it) could easily do so.

I have ask MNHQ about a topic :)
You can call the macmillian nurse, it doesnt have to be him. My DH is the same and only wants to know the bare minium but thats fair enough, me I want to know it all.

I feel exactly the same. However he wants to feel is fine by me.

But I need to know as much as I can. Its my job to take care of him.

Please ask for a topic? I'm not sure how.

what type has he got (dont have to tell if you rather not)

Lymphoma. The indolent non-Hodgkins follicular type. Hence no cure.

When he was being investigated, I was praying it was the Hodgkins type, or at least the aggressive (interestingly, more chance of a cure) NHL.

what hospital he under? DH has leukemia and been battling for 19month now, but its a long term one, not cured just kept in check, but at the moment his not doing well.

St Georges in London. I'm so sorry about your DH.

Rosie - it is within the realms of possibility that he may be able to work, although probably not all the time. It really is a bit of a step in the dark as to how you will be affected, depends on your health to start with, what type of chemo, how often you are having it, and even people on identical regimes will react differently.

It's just a question of playing it by ear, and if he is able to go into work part of the time, it is a good thing if it is important to him. Will help with how he feels mentally.

Its a cliche, but one day at a time is how you get through it

I think a thread for carers is a great idea and would be helpful for lots of people - I haven't been on that side of the fence, but in some ways I think it was harder for my DH than it was for me.

Love to you Lisa and your DH x

I know there are all sorts of chemo but when hubby had his there were very little side effecys,no hair loss ,sickness or ulcers which we were warned about, he managed to keep working only having the day of the chemo off.You just have to see how it affects the individual and keep the calories up and be as supportive as you can. Good luck and hope it all goes well for you both.

So sorry to hear about your husband. I had chemo a few years ago, and found ginger biscuits were most palatable way to manage nausea. Also found my sense of smell became extremely sensitive, adding to nausea. I was told to keep snacking to avoid weight-loss. I still use Aqueous Cream and/or

Soap as gentlest skincare, and wash my hands every time I come home, to avoid infections. It is true everyone reacts differently and you will find out more as you go along, but I think you had a good idea to ask here for experiences. Good luck and best wishes to both

Thank you all. Mumsnetters are amazing (if you stay away from the scary discussions).

I am hoping my DH can stay at work as much as possible, and is not too poleaxed by treatment. He, like me, is task driven and copes better if he is busy. Although he's "brave" - and I hate that metaphor of cancer as a battle, its more of a bloody ambush in my view - he is deeply afraid inside.

If I could take it away and have it instead I would do so in a heartbeat. I feel a bit like a tigress with a cub at the moment.

RedRosie, so sorry your DH's going through all of this. You're right, cancer is a total ambush not to say terrifying.

I've just finished chemo and think it might help to know that realistically it's only once he's through the first cycle that your DH will know how he'll feel. After that it's easier to plan life/ expectations more around that.

Basically barring infections, most people find each cycle hits them the same. The sod of it is that everyone seems to have different side effects, so two people can have the same drug and be hit completely differently. In other words, it really is only once he's through the first dose that he'll know what he's facing.

Might reassure him/ you to know though that I was on a week cycle, and found that each time the first week was pretty bleak, but then there were 2 weeks when I felt okay, building back to pretty much normal before the next dose.

Once I'd sussed how I'd be hit it was far easier to plan and also to accept the treatment as it's far less scary when you know what to expect.

Felt it important to post, because before I started, I remember being terrified I'd be bed ridden for months and that really isn't the case for most people. I've managed to work (mostly!) throughout and have had plenty normality amidst it all. Good times too - important to plan treats for the high parts of each cycle.

Am sending you a huge hug, as you must more than need it. xx

My darling mum is having palliative chemo and has had very few side effects. Those she has had are constipation, a bit breathless and tiredness. Before she started her treatment I got a small box and filled with things like anbesol gel (in case she got mouth ulcers) moisturising cream for her hands and feet as we were told that her hands and feet could get sore from the treatment, mini heat packs for her hands because she will feel the cold a lot more. Like your DH, Mum and Dad didn't want any Macmillan involvement initially. Mum thought that by doing so she would be treated like she was dying which is absolutely not the case as she has found out. They have helped with forms for a disabled badge, advised Dad on any allowances he may be entitled to and have provided a source of information when needed. Because the chemo has made mum tired, the disabled badge has proved to be invaluable when they are out and about.

You have got such an emotional rollercoaster ride ahead of you and I wish you and your DH lots of love and a huge hug x

RedRosie, Just want to send you virtual support. Others on this thread have made helpful suggestions - I have just finished 7 months of chemo, and strangely a very close friend got a diagnosis of NOn-Hodgkins lymphoma earlier this year. Her's is at the stage where the only approach is 'Watc and wait' ie she'll only get treatment if it gets worse. She has found this difficult to accept, but the specialialists keeps telling her that of all cancers, this is not a bad one to get, IYKWIM.

I was on a 3 week chemo cycle first - which meant 2 days of feeling rough, a week feeling a bit less rough, and about 10 days when I felt pretty OK and walked and did as many nice distracting activities as I could manage. Walking whenever I could helped a lot with my morale and also with nausea.

Then I was on a 28 day cycle and that was more like feeling a little ' low grade shitty' for longer periods, but not as ill as with the first, more aggressive drug. So all drugs and all individuals are indeed different, and once your DH has had a cycle you'll both be able to plan a bit more. Try to take one day at a time, and not to panic - chemo is unpleasant but for most people its manageable and the staff really try to help.

I have a friend who worked on her good days. I would just advise that your DH needs to see what his first cycle is like before totally committing himself to working. Also, I found that the ffects accumulated a bit, esp with the first drug. My first 2 cycles were not bad, but with the last two the side effects were a bit more marked and I was sick. However, here I am- we got through it, and you will too.

Good luck.

Hi Rosie, i'm so sorry to hear about your husband. I can understand how you're feeling as my husband was diagnosed with bowel cancer 2 months ago and after surgery has just started 6 months of chemo last week. I've also found being prepared and being practical is a big part of how i cope too.

It depends very much on what chemo you husband is having as they all have different side effects, you should be given lots of info about the effects and what to do about them, for example one common effect of one of the drugs my husband is on is sore, dry hands and feet so we've got into a good moisturising routine before effects start and he wears gloves most of the time.

Just vigilance in clealiness and steering clear of people with infections/crowded places as his immune system will be depleted even more, especially 7-14 days after the chemo as its at its lowest then. There are some very informative websites such as the macmillan site (ironically i am actually a chemo nurse and we print our patient information from there) and like the other girls say, use your chemo unit and the specialist
nurses.

Above all keep strong, this has been the hardest thing i've ever been through (especially as everything happened when our newborn son was only 10 days old) There is always hope and use your family, friends and professionals to get through this, if you ever want to talk please get in touch.

Take care, Debbie x x x

Aromatherapy, exercise (as appropriate to ability) and massage have all been shown to be better than placebo at improving well being during chemotherapy.

None of these would interfere with the regime either.