Chemotherapy stopped

hi  Fanu welcome to the online community, sorry you've had to come and find us.

chemo is a highly toxic combination of chemicals administered to wipe out cancerous cells that may have been left behind after surgery. Surgery is still the quickest and easiest way to remove cancer, especially breast cancer.

Some cancers are more sneaky and have less options, I had Her2+++ breast cancer for which there is Herceptin, perjeta and Kadcyla. The more common ER+ have hormone inhibitors which are effective at controlling hormonal breast cancers. The trouble with triple negative is there's no other drug therapies available yet. Hence most people are offered chemo with stats showing it to be effective. 

People are generally reluctant to accept the need for chemo. When the Onco teams are in full on persuasive mode they will say things to sway you to accept what is a fairly brutal treatment, short term pain, long term gain, using words like 'aggressive' to make their case.  

It then becomes difficult to accept a back track or shift of ideas. 

The cancer has been removed. The chemo is belt and braces.

Chemo itself carries a risk, as you've found out. If the risks outweigh the benefits you have to stop. 

There are quite a few different chemo regimes and just because TC has been stopped doesn't mean there aren't other options for after radio as they've said. 

I had four rounds of EC three weekly and then four rounds of T two weekly but there are plenty of combinations if you all decide chemo is the best course of action. They also offered to reduce my dosage at one point by as much as 50%.

It's definitely worth considering whether her diet could be improved to bolster her immune system in advance of future chemo.

My vitamin D is often very low, and I had to take potassium supplements to get to the final round of T.

What's her diet like and is she otherwise fit and healthy ? I'd go for food options rather than supplements by preference, pills have packing ingredients that can affect the kidneys. Rainbow recipes look great with red, green, yellow and orange peppers but I hate the smell of peppers yet everyone else likes them, and I'm the only one that likes courgettes or aubergine. Does she live alone? 

From what you've said it sounds like chemo could still be considered and actually sounds like the team are giving her good care and attention. If they are giving her the best possible care she will have the best possible prognosis. At 76 I'm not sure our local hospital would be as attentive, my mother was 59 when they decided there was nothing left to offer, mind you she had lung issues as well as leukaemia.

Do you go with your mum to appointments ?  And which area are you in, if you don't mind my asking?

Carolyn

xxx

Hi Fanu My oncologist usually gives weekly paclitaxol to older patients who might cope with the usual regimes. Side effects are slower to develop usually, though the most common one to watch out for is peripheral neuropathy. If your poor mum had sepsis after her first EC that's an option to ask about. 

Hi Carolyn28, 

I'm not allowed to accompany my Mum to appointments because our local hospital is being very strict due to Covid. She lives with my stepfather who hasn't been allowed into any appointments either, although he was allowed to visit when she was hospitalised, but only because they share a household. So the only information I get is from her directly. She's a former nurse so has a good understanding of things they tell her (although they didn't tell her she had sepsis until she asked, after 5 days on IV antibiotics). I phoned the ward when she was there but they only give out very basic information (her fever is down, etc). I do feel like I'm shut out a bit, because of Covid restrictions. She was diagnosed in April but I couldn't visit or do anything because of lockdown.

I'd say her diet is fairly good, maybe she didn't take enough exercise before diagnosis. I've noticed her not seeming quite as robust in last 2-3 years, she's had a few chest infections etc and seems more clumsy but definitely not frail. I know she takes vitamin D (we're in Scotland so this is highly advisable!)

I believe them when they say it's aggressive, from what I've read of triple negative breast cancer and the stage it was discovered at. She only noticed a lump in her armpit, none in her breast although they did find a small lump there. They found cancer in 20 of 21 lymph nodes. She was actually extremely keen to start chemo and zap any outlying cancer cells. 

I don't understand why they can't try a different chemo now, or a lower dose. Could it be because her immune system has been weakened by the sepsis? 

It's all very worrying.

Londonmumof2 Thankyou. I will mention it to her. She's ok and feeling "normal" again she says. 

hi Fanu being a nurse she will have a good understanding but there's a lot to take in, shame someone can't go with her. My hospital posted my notes to me after the appointments, I think you can do that throughout the UK.

I've only been to Scotland twice and it was scorching hot both times. Good that she takes vitamin D though. 

A friend of mine had triple negative and she seemed to spend the entire time in isolation because of her low blood counts but she actually seemed very well and didn't have a high temp at any point but you have to be vigilant because sepsis is a real threat. I had a high temp one day but couldn't face sitting in A&E, although I did contemplate phoning them to get in via a side entrance, I took off the fleece I was wearing and the bobble hat and waited for it to drop, which it did, took a couple of paracetamol and went to bed. This is NOT the correct approach. Sepsis always needs to be identified and acted on, door to needle time of under 1 hour is the NHS target. Your hospital does sound like it's pretty good.

I think they will try a different chemo. Radio is targeted and external and only takes about a week or so which will be a time to boost her up. We have a debate at the moment about whether to eat the blackberries straight off the bush or wash them. The only diet I ever followed with the GI diet as I had gestational diabetes but when I had chemo I realised it's actually quite hard, or was for me, to collect the huge variety of vitamins and minerals by eating the right foods, a real challenge. I'm no chef so I tend to go for a small variety of foods I know the family will eat, one is a creamy tarragon sauce with chicken, with the vegetables in it rather than on the side, everyone gets more veg that way. If my husband cooks it he won't put carrots in because he doesn't like cooked carrots but you're then missing out on minerals from the earth. He doesn't like any root veg. Zinc and vitamin C are widely recommended for boosting immune systems. I like oranges but only if I peel them and slice them thinly which is a chore. I've looked at some of the ready boxed up meal plans, which although expensive might offer some kind of solution.

Though I'm loath to recommend them boxed cereals do have added vitamins and that's a quick way to up the intake.

I thought vitamin deficiencies were a thing of the past but when I looked into it I realised I don't really get enough of anything. Leafy greens and pulses barely show up on my menus. If the bags of spinach look too damp they get fed to the swans and cygnets at the moment. 

I got through chemo by adding a chopped up apple to porridge, along with a spoonful of honey and cream, plus some nuts, seeds and dried fruit. 

that's my little rant on vitamins and minerals.

I'm trying to find a nice list of available chemo drugs but as Londonmumof2 says it's not just about the type of drug, they can also vary the dose and the cycle, so that are quite a few options. 

https://breastcancernow.org/about-us/news-personal-stories/triple-negative-breast-cancer-explained

that's quite a nice article, I didn't realise there was a targeted therapy, that's good

There you go, a nice list. She can go through it with her team so they can work out which one/s will be most effective for her. 

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/chemotherapy/chemotherapy-drugs

hugs

Carolyn

xxx

Hi Carolyn28, 

Thanks. Yes, I think my Mum can only take in so much information at a time. I visited just before she started the chemo, and she had a massive folder full of all the paperwork they had given her. I'm hoping to visit again next week now that she isn't shielding. 

I'll ask her what she normally eats, I don't normally eat there because I'm vegetarian and like different things, but I reckon it's fairly healthy with meat & 2 veg, fish etc. I know what you mean about it being hard to get ALL the right nutrients! I eat a lot of nuts, pulses and fruit but barely any veg which I know is bad. I do like veg but hate cooking...my Mum does cook though. But so many people eat tons of takeaways and junk food, I figure if you're not doing that it's got to be better. Maybe not optimal, but I imagine few folk are eating an optimal diet. 

Thank you for the extra info about chemo drugs etc, it's much appreciated. 

I hope you are keeping well yourself? I hope it's ok to post in this group rather than the friends & family one. 

hi Fanu you can post in any group you feel is relevant to your situation and also where you find someone to chat to, I don't come on here very often nowadays but I remember the blind panic and felt a real need to find people like me. So I stick around to haul the newbies into the lifeboats.

take care

Carolyn

xx