chemotherapy question

[sphil]

My Mum has just started chemo for advanced bowel cancer which has spread to her lungs and liver. She is on a three week cycle of oxaliplatin (once every 3 weeks by drip) and Capecitabine (every day for two out of the three weeks). She started to have side effects about 5 days after starting treatment. Does anyone know if side effects from this type of chemo peak at a certain time in the cycle and if they are likely to get better gradually? Or will they get worse the more cycles she has? (she is on a six month course).

Atm she's mainly feeling extreme fatigue - the other side effects are being controlled by drugs thank goodness. But because of the tiredness she doesn't really feel up to seeing anyone. We have been told that her illness is terminal though we have no idea of prognosis - I don't think anyone (least of all her) wants her to spend her remaining time without seeing her children and grandchildren .

Sphill have a look at some of the cancer charities websites, they have excellent info for patients and relatives about chemo and effects, detailed down to individual drugs (Im sorry I cant remember the site, its 2 years since I worked with patients undergoing chemotherapy).

I think everyones view is different on whether treatment outweighs other things IYKWIM and I wouldnt want to comment or give my opinion.
Can you talk to macmillan or similar to discuss

I've looked at Cancerbackup (think this is the site you mean) and although there's a lot of useful info about individual drugs and side effects, there's nothing about when side effects are likely to peak. There's a help line number on there though, which I could ring. Mum doesn't have a Macmillan nurse atm - maybe because she isn't yet deteriorating? Don't know what the criteria is for their allocation.

Sorry to hear about your mum.

Why don't you ring the chemotherapy nurses and ask them? The side effects do differ from person to person but they should be able to talk you through some general stuff.

I get virtually immediate effects from my dose of oxaliplatin ( as part of the folfox regime which is different). Last cycle but one (4 of 9) I couldn't swallow room temperate water within half an hour.

With my regime, for example, my immunity is lowest on, I think, day ten of a fourteen day cycle and then starts to come back up.

If she doesn't yet have a macmillan nurse does she have a specialist colorectal nurse?

Sorry, forgot to say, does generally get worse and worse as you go on. Not what you wanted to hear but how it is for most, and certainly for me. I just got an extra break over Christmas as my immune system was fucked (neutrohils 0.6) and it was a joy. Last week's cycle was much easier than the one before.

Also, they can and do alter regimes to fit reactions so she needs to make sure she tells the oncologist all her reactions at her next clinic appointment.

Find ways of making that family time. The chemo and specialist nurses might have ideas, or maybe call a local hospice? Your or her GP might be able to advise where to find help on this.

Sorry to hear about your Mum Sphil.Good advice from TO.(Sorry you are going through this too).

I only have experience of administering Cisplatin to people but the drugs in this group are quite intense and effects can be quite quick with regard to symptoms etc.Hopefully she has anti sickness meds at hand.And advice on what to look out for symptom wise.

I would also contact ward for advice,did they not give you any info on discharge?Or ref to nurse specialist??

There is a booklet,from either Mcmillan support or Cancerbackup on "Coping with fatigue"

As TO says ,usually your mums blood counts will be at the lowest from around day 10-14 which is when her immune system will be at its lowest,then her "Counts" should hopefully start to go back up again.However it isn't always an exact science and sometimes peoples can drop more quickly/take longer to recover.

Hoping your mum feels a little better soon xx

Sphil, sorry to hear about your Mum.

My dh has inoperable cancer and we've been told the prognosis is poor (best 4 years, worst 3 months which doesn't help much with planning!) He is currently on round 4 of a 3 week cycle including cisplatin (in the same family as oxaliplatin I assume). So for what it's worth here are our observations:

We found that 1st time round the side effects kicked in after about 24 hours, then each time since it's been quicker. The fatigue/malaise seems to last around 7-8 days then he gradually improves until the 'Big Day' when he has 2 of the 3 chemo drugs via a drip over an 8 hour period. In between he's on a 3rd drug via a pump 24/7. He's very fit and extremely bloodyminded strong-willed so drags himself down to the gym 3 times a week during the 2nd 2 weeks, and tries for at least once towards the end of week 1.

Like TO, we had a 'reprieve' over Christmas as his white blood cell count had dropped too low for a Big day so it hit New Year instead.

We arrange days out/visits etc for the last weekend of the cycle partly to distract him from the imminent hell and partly because that's when he feels at his best.

You don't say how old her grandchildren are but Winston's Wish's 'The Big C' has helped my dd understand a lot about cancer and its associated emotions.

I hope your Mum's side effects do follow a similar pattern and you're able to have some quality time together.

Thanks everyone. Went to see Mum today and she was a lot better, so I guess it's something that comes in waves. She's on Day 9 of her cycle and says the worst days so far have been Days 4-7. She does have a specialist colorectal nurse who is always on the end of the phone and has been very helpful. She's also been told that her immunity will be at its lowest from day 10-14, like you TO.

Her grandchildren range from 23 to 1! My DSes are 7 and 6, but the 6 year old is autistic, with limited understanding of speech, so explaining to him is going to be very difficult. I've had a quick look at Winston's Wish and will definitely use the materials there for DS1.