Help supporting (Mum) through chemo?

[QTPie]

Hi

Following on from a previous thread. Mum has just been diagnosed with breast cancer. She will start chemo imminently before surgery.

I understand that chemo will start in 1 to 2 weeks. It will be 6 cycles and last 18 weeks. Each cycle is 3 weeks: the drugs are given, one bad week, one immune-suppressed week, one "good" week.

Mum is 76 (77 in June). She is relatively active and she is independent. She lives alone. She does have various underlying health issues (IBS, Fibromyalgia and mild COPD). She was recently hospitalised twice (successively, two weeks in total) for collapsed lung due to chest infection caused/worsened by inhaled vomit. Recently (over the hospitalisation) prone to nausea, vomiting and inhaling that vomit (possible that oesophagous not always working as it should?). Low pain threshold (fibromyalgia related?).

We live 45 mins to 1 hour drive away (depending in traffic). We have a very active, rather noisy 5 year old. I am an only child. Dad died 11 years ago.

Mum has private meducal insurance (no limit on cancer cover, Bupa). She will be using this. It may open doors like "chemo at home etc).

How can I help support mum through the chemo? It is obviously a marathon and not a sprint. I know that the effects of chemo can vary dramatically depending on both the drugs used and the individual, but am worried that this massively (especially because of the IBS, Fibromylgia and recent hospitalisations related to vomiting).

Also, my husband's grandma is 92 (had an operation yesterday to fix the collarbone which she broke in a fall). Our plan (husband, son and I) was to visit her during the school Summer holidays for a couple of weeks (they live in California, us in the UK). This would be around cycle 4 of mum's chemo. Is this going to be possible (worried about leaving mum)? What are the practicalities?

Any help/advice appreciated. I have supported mum through operations/hospitalisations before, but not chemo (she didn't have chemo for the lung cancer). Although I undrstand what chemo is (and that it can be incredibly horrible), I find it hard to understand how best to support (and independent) person with it.

Thanks

[chocoluvva]

There are vitamin/mineral supplements specifically for chemo patients available from good health-food/vitamin/mineral shops. I'm sorry, I can't remember the name. Eating little and often is best. Your mum might find that her sense of taste is affected.

She will probably get Oxaliplatin which will make her hands and feet, nose and mouth very sensitive to the cold. Gloves, nice blankets and scarves and really nice socks would be a nice present. She might find fiddly things get more difficult to do too.

Ask for stronger anti-nausea meds without hesistation - they tend to start patients off on (cheaper) and not as strong drugs such as Domperidone. I found it wasn't enough to prevent nausea (chemo for bowel cancer - oxaliplatin is used for bowel and breast cancer, but your mum will get oxaliplatin + other chemo drugs). Ask for cyclizine and ondansetron to control nausea if they don't offer it.

The most effective help for dry mouth/ulcers is called MuGuard. Most chemists don't stock it - it's not widely known about but it is prescribable. A good over the counter one is Gengigel.

It can be difficult to plan for chemo - IME it's not that common to get all the treatments at the time they are originally scheduled for as the 'blood counts' sometimes dip too low to make the next round of chemo safe or patients get an infection. But the medics won't let your mum have more treatment than she can manage. It's quite common to reduce the dosage as the weeks go by.

Very best of luck - the time stretches out in front of you at the beginning of treatment but it'll soon pass.

[QTPie]

Thanks chocoluvva, that is absolutely fantastic information. Thank you so much. I will make notes from your suggestion to raise with the Oncologist.

Hope that you are doing really well. Take care.

[WhereTheFuckIsMyFuckingCoat]

Hi. I am currently undergoing treatment for bc. I'm on the second stage of chemo, which is herceptin based and lasts 12mths, but when I was receiving the anthrycyclines (which is what your mum is about to have), it did follow a very specific pattern, like you said. I was given doxorubicin and cyclophosphamide 3 weekly. One drug was administered via IV over a 2 hour period, and the other was 'pushed' slowly by one of the oncology nurses. The one which was pushed was bright red, and caused my urine to be bright red, immediately, which faded over 24-48 hrs. Unfortunately, it made me very sick, within three hours. It also gave me terrible migraines and caused me to be disorientated and fuzzy. I was virtually bed bound for 3-4 days. I've heard that this isn't uncommon, although other people seem to get it much easier (I hope your mum is one of these). For the nausea and vomiting, as pp said, ask for ondansetron (zofran), which can come in 4 or 8mg, and are available as wafers that you put under your tongue and don't have to swallow. Also, a drug which is usually for insomnia, Restavit (brand name), taken 1/2 tab morning, 1/2 tab lunch time, whole tab bed time, is very effective for it. It's an over the counter drug (doxylamine is the active ingredient). Your mum should also be given a steroidal anti emetic to take for three days following the chemo. Basically, she shouldn't have to just put up with the side effects, there are a lot of things they can do for her. You may need to advocate for her if she isn't feeling strong enough, or generally isn't the type to stand up for herself.

As far as going away when it is her cycle four. As she will be well established into the routine, you will know how she is handling it. She will definitely need someone to transport her to and from chemo, but as you've said she may have chemo from home, then that may not be an issue. For about five or six days after each cycle, I just wanted to lie in bed, keep warm, have close access to a toilet and my medications, and shut myself off from the world. When I could eat, I craved grilled cheese and not much else. It felt very much like hyperemesis (X100).

My hair started falling out within about two weeks, and within five weeks I was completely bald. It made me very cold, and I live in Australia! Lots of warm hats and scarves helped though! When it is falling out a lot, it is helpful to shave it off, as I found it was sticking to my iPad screen, falling in my coffee. Very annoying, and a constant reminder. I did feel very strange at first when dh shaved it, but that wore off quickly.

Anyway, sorry for the essay, I've just realised how long it is. If you have any other q's I'm happy to answer them. And good luck to both your mum and you.

[DidgeDoolittle]

I have IBS and had chemo for breast ca ten years ago.
The chemo set my IBS off something rotten. It improved when I used buscopan regularly. I also got very constipated. I believe this is common. I recommend Movicol several times a day to prevent this.
I felt better when I ate something. Salty food was fantastic. I used to suck my way through a large bag of twiglets.
As others have said, you get very cold and very tired. I used to sleep most afternoons. It is important to go out though.
Good luck.

[QTPie]

Thank you so much ladies, your words are invaluable. I just have no concept of what chemo is actually like and how to best support it. So I am incredibly grateful for everything.

WhereTheFuckIsMyFuckingCoat, I really hope that your treatment is going well.

Because of mum's medical history, I am trying to be "prepared for the worst whilst hoping for the best".

I will invite mum to stay here during her bad weeks, but I imagine that she will want to stay at home (comforts of home and wanting to be alone etc). Does anyone ever have nurses in to check on them during their bad week? If older patients have a bad reaction, are they treated as inpatients? Mum will have her chemo privately (Bupa) if that makes a difference.

DidgeDoolittle, I am very concerned about the IBS (C). After many years of suffering - and the past year or so bring particularly bad - she has finally found a drug that helps (virtually everything else is not effective). However - like the recent two weeks in hisputal - other medical problems can easy throw her management of her IBS out of balance and then it is a struggle to get the balance back again. Nausea, lack of appetite and not eating are all bad for IBS. Extra (chemo related) constipation would be bad.

I am making notes on everything you are all saying.

Thank you x

[mintyneb]

I'm just coming to the end of treatment for BC. When I had chemo I started off on 4 cycles of EC (often ladies are given FEC - you'll see the drugs referred to in this shorthand so I can't remember the full names) and then should have had 4 lots of paclitaxol but this was stopped after 2 due to the side effects.

On the EC I also felt nauseous within 3-4 hours. On my second cycle I was given Emend which stopped me wretching but left me with low level nausea still.

One of the worst things I had was acid reflux, I was literally being woken in the night with acid pouring into my mouth (sorry tmi) so I ended up sleeping propped up. I also got hold of omeprazole from my GP to help. I suffered really badly with constipation so needed lactulose to help,

Make sure your mum drinks plenty of water to help flush the drugs through her system. Stock up on ginger biscuits, ginger tea etc to help with nausea.

You might find that if they give her steroids, provided she is not being sick, she could end up eating a lot more than usual

On the paclitaxol or T part of chemo, I didn't have the nausea but felt like every bone in my body was being crushed. The pain was unrelenting and quite awful

So they're some of the bad things about chemo! But I did have good weeks in between and even managed to go into work.

I lost all my hair but got plenty of scarves to over up, I never bothered with a wig.

Good luck to your mum and with you by herself I'm sure she'll make it through

[DidgeDoolittle]

I found the McMillan nurses invaluable. They phoned me everyday for the first few days after each session. They would contact the district nurse to visit me if necessary.

I found the IBS the worst bit tbh. Once I had that under control things got easier. I used to get horrendous stomach cramps within hours of the chemo. The combination of buscopan and aloe Vera juice on a regular basis worked well.
I agree with drinking a lot. Another tip I was given was to keep your hands nice and warm just before the chemo. This helps the veins to stand out and make it easier to get the needle in. Drinking lots of water at this time helps them stand out as well.