I am new to this so apologies if I ramble on… My mum was diagnosed with stage three invasive lobular breast cancer in June this year. She was also told that 37 out of 40 of her lymph nodes were cancerous but that it wasn’t in her bones of liver! From this she was given a very agressive tratment plan - 8 weeks of chemo to be followed by radiotherapy. She is over half way through her chemo and just had her first dose of taxotere and is not dealing well with the side effects.
She hasn’t got out of bed for the past week nore has she eaten much, has very achy bones and muscles and can barely keep her eyes open and is now telling me that she is going to refuse any further chemo and would rather die… not words you would ever want to hear from your mum. To be blunt I have no idea what to do and don’t want my mum to give up the remaining sessions of chemo as I am worried beyond words that the cancer will come back and that will be that.
Does anyone out there have any advice on what to do / how to deal with side effects etc…
Sorry, I can’t help yet - but this reply should bump it up and someone else may help. I’m so sorry that your mother is suffering like this - hard for you both.
I’m due to have TAX soon, currently on FEC. I’ve read many posts and I would suggest that in the first instance you ring the chemo suite and get advice. It may be that your GP can come out and prescribe stronger pain killers. As regards further TAX, talk about it with the onc, they may reduce the dose next time.
Hi Nelly
what an awful thing to hear your mother say; I’m sorry she’s feeling so bad.
I haven’t started tax yet, begin next week, but I can tell you I felt like dying after my 4th cycle of AC. I was pregnant and exhausted and some days just lay in bed and cried and told my OH that I couldn’t go on, I’d rather be dead than feel like this. I thought I’d feel that bad forever. After 4 weeks, I still felt like death. But after 6 weeks, I felt truly normal again! It’s amazing what our bodies can recover from. Is she having 3-weekly cycles?
Chemotherapy is relentless. It is frightening the way it grinds you down until you feel broken. But it does get better. I know I don’t need to tell you this, it’s your mum, but if you can convey to her that there is an end to it, it may be more bearable. I’m scared about the tax, but I know I’ll get better, after my experience with AC.
On a practical level, has she told her onc how awful she feels? Maybe there are drugs to counter side effects that could help, or even, perhaps, her dose could be adjusted? I’ve been told to report all side effects on tax in case a lower dose is needed.
I hope you get some help and your mother begins to feel human again soon. It’s a bloody tough ride through these toxic drugs, I have every sympathy.
Tax is harsh. I had my last one six weeks ago now and can still remember it clearly. Like Jane mentioned the dose can be reduced, mine was because despite having a neulasta injection my blood didn’t recover well for the next dose. I have heard that the first dose is then most important and as your mum has had that they may be willing to change it.
Please let your onc know all the side effects. I found there was something they could o for all of mine and that really helped.
It’s been six weeks now and I am feeling nearly back to normal. I still have aches and lack a bit of stamina, but I am so much better.
I really wish your mum well. Take care of yourself. Dx
It was must be heart wrenching to see your mum like this and hear those words but my husband saw and heard those words from me when I had my first cycle of TAC ( I had Taxatore along with two other drugs over 6 cycles).
The aching was so bad for me on my first cycle that I couldn’t sleep and settle. I was having baths at 5 in the morning to try and ease the aching. I just thought how can I go through this 6 times but I did. After about a week to 10 days after each cycle I started to feel better and had at least 10 good days after each cycle where I could be normal again and go out etc. I was dreading the horrible aching on the second cycle but it never came, I did have some aching but I was able to cope with it ( only needed paracetemol). From cycle 2 I took one sleeping tablet a night for five nights after chemo and I think this helped. I didn’t get the severe aching again on my four remaining chemos. The tiredness did get worse for me and by cycle 5 and 6 I was going back to bed each day but I thought why not, I didn’t have to go to work and the kids were at school so I rested as much as I can. I just thought whats a few weeks in bed if the chemo does its job and I have the rest of my life.
Your mum really needs to speak to her onc, they will be able to advise what strong painkillers she can take next time if the pain is as bad or like Stella said, reduce the dose slightly. There is generally something they can do to help with the side effects.
When your mum starts to feel better and has her good days she will probably feel differently too. I know once I had some good days I knew I would be okay for the next one.
I am 7 weeks post TAC and I have lots of energy and I don’t have the aching bones anymore. Chemo seems a blast in the past now although it was hard at the time but you do forget about it and once your mum has cycle 2 she will be half way there. Doing the sums helped me cope better.
Hi nelly i understand how your mum is feeling tax is not kind to our bodies but trust me it work it does the job its supposed to do you can get food drinks that r realy gud and also get a stronger painkiller for her aches give your mum a bit more time i said after everyone of my chemo im doin anymore but i did and it saved my life its just she may think she cant do it anymore but my guess she will a few more days can do a lot hope this helps
I am so sorry you and your mum are going through such a rough time. Tax is a tough chemo, and whilst I didn’t stay in bed for a week, it did take a huge effort to move from the sofa, and I spent a lot of time in tears wishing it was all over. But, as other have said above, the effects do wane after 7 - 10 days, so your mum should start to feel better any day now, and hopefully will feel well enough to want to give it another go. Also, I found the first Tax was the worst, the next two not so bad - so maybe it will be the smae for your mum.
Good luck - I hope you can help her decide to carry on with the treatment.
How I feel for you and your mum. I’m afraid I was the same as your mum, couldn’t get up, couldn’t eat,ached all over. I had a dark rash over parts of my body. I also seemed to get a high temperature every time I had tax.
The most important thing as I’m sure you’re aware is to check your mother’s temperature. All the times I felt my very worst I found my temperature was going up. Check through the day as I found mine was usually okay in the morning but always went up at about 5pm. if her temperature is high contact the chemo unit straight away.
Because of my severe reaction to taxotere (including neutropenic sepsis) I had the dose reduced by 25%. I felt terrible throughout all the treatment but not as bad as the first time. I was prescribed the maximum dose of co-codamol to help with the aches and pains (and there are other prescription only drugs too).
The other thing that may help is a drug called domperidone which can help with nausea and is taken before meals. I could only eat once I’d had this.
What got me through the 4 doses of tax was knowing that however terrible this drug was it was also potentially life saving.
May I suggest that you speak to someone in the chemo unit and tell him/her how your mother is feeling. It may be that once she picks up a bit she’ll be willing to go for the next dose. If not, then there may be other chemo options.
Your love and support will help your mum more than you can know.
take care, Elinda x
Hello Nelly,
Sounds like your poor mum is having a tough time and you too.
I think you should get in contact with her Breast Care Nurse or the chemotherapy nurses who can advise you who to contact to get your mum the medication to cope with the side effects.
I was on very aggressive chemotherapy because I had 27 out of 28 nodes affected and after my first Taxotere I felt absolutely awful. If anyone had then offered me the choice between living and dying I would have been tempted. I was shocked at how painful it was and struggled to cope. For the next taxotere I was given much stronger painkillers but found that the painful side effects weren’t so bad. In fact the first taxotere was definitely the worst one in terms of pain, the rest got easier.
Good luck with it all. It’s going to be tough for your mum and for you watching her go through it. Hopefully once her medication is sorted she will feel a little better and consider continuing the chemotherapy.
Gill x
sorry to hear she is finding TAX so difficult. I had three FEC and three TAX and to be honest the TAX did knock me for six! The side effects for me was severe fatigue and basically lack of appitite and any desire to do anything at all - I felt very down. I never really recovered between treatments either so I didn’t get a ‘good’ week.
Whilst it is harsh, its only a very short time in your life I would urge your mother to stick with it. It doesn’t get easier as such but the end gets closer and once the poisen is out of her body she will quickly recover. I finished my TAX is August, followed by RADS and whilst I do have some bone pain and stiffness and my nails are a mess - I am getting on with my life and putting it behind me.
The reason they give you TAX is that it gives you a better chance of long term survival so whilst emotionally she may feel drained at the moment she needs to grab it with both hands it will soon be over and she will get her energy and strengh back and be her old self in no time. good luck x
I am now 5 weeks post last tax and can honestly say the pain other side effects are a distant memory, please encourgage your mum to stick with it.
Painkillers are a must as many as she can take, hot water bottles to ease the muscle pain and keep as warm and comfortable as possible.
Give into it for the first 7-10 days and by the time the next tax comes around she will feel more like herself.
I also invested in a TENS machine which she might consider for pain relief?
Eating is so important to get the body back to fitness, I lived on watercress soupss to get my iron back up and when I lost my taste just added chillis to everything.
I even went off water so bought elderflower cordial to mix in with lemonade (which I’ve never drunk before) just to get a nice taste in my mouth.
I also found as soon as I felt better I got out walking, just to make me feel normal again.
My nails too are a mess after tax but I hide them by putting polish on them, during tax I did put black nail varnish on them as I’d read this helps to keep them.
Hope your Mum perserveres, it will be well worth it.
Hi, My wife has just had her fourth TAX. She has typically been “out” for about a week. It is rough, but talk to the oncology team.
The first dose was the one that has hit her hardest.
What I will add is that chemo really does work. My wife opted for chemo before surgery. She had a scan the week before last and the consultant could not find the tumour.
Hi - can only echo what saffronseed has said.
All chemo is hard and tax especially so for most people - but it is really important that your mother sticks with it- it is the ‘gold star’ of BC chemo. However bad she feels, it will all be over in a few weeks and after that she will start to pick up-though it takes time.
Do do all YOU can to encourage your mother- I think by the time you read this she may already be feeling a little bit better as the side effects don’t usually persist for the whole 3 week cycle.
I guess your mother is post menopausal but that does not mean it will necessarily be worse for her than for younger women- I was 66 when I had my surgery, chemo and rads and now, 2 years on, feel pretty good.
There are many drugs that the onc can offer to help with your mother’s bad reaction so do get back to he hospital. Best wishes.
Thank you ever so much for your responses it means a great deal to know that you have all taken the time to reply to my post. Since we have been thrown into the world of breast cancer in June I have discovered the kindness of strangers and seen many examples of the strength of the human spirit. Why does it take something horrible for us to appreciate all of this??? Anway I totally digress… So to update you all - I have made a list of your advice and given it to my mum. She is going to speak to her oncologist about the dose and hopefully will stick it out with the taxotere. She has also got out of bed and is leaving the house to go to a concert with me tonight so your words must have done something!! I think knowing she is not alone has helped although she does still feel like a wimp in comparision to all other breast cancer patients, but it is small steps I guess…
I’m so pleased that your mum has picked up a bit. She definitely isn’t alone!
I think the thing is that everybody is different and how we react to treatment varies enormously. I don’t think it’s about being a wimp at all. I only had 2 days off sick at work in about 7 years prior to my diagnosis and battled on at work through another quite serious health problem. Once I started treatment for breast cancer though I felt completely debilitated and had so many problems.
I agree about seeing kindness - I experienced so much of that while I was having treatment last year. From the neighbours who called in each day while I was having chemo to check on me and give me some soup, to the GP and district nurses who were amazing, and the lady in the barbers who cut my newly grown back hair for free etc etc
I wish you and your mum well and I hope she is able to continue with her treatment.
Elinda x
Hi I am so sorry your mum has felt so wretched and glad it seems she may be feeling a bit better. I had 3 fec and 3 tax and the first tax was very difficult, I had a lot of pain I felt I couldn’t lify my head up and was shocked at how awful it made me feel, I was also teetering on feeling it was too awful to go through and in a way we shouldn’t be even offered something so barbaric. But now I don’t feel that way as it does pass and the more you moan the more you get the pain out I found!! Boy did I moan! The second one was very different, it wasn’t so painful the effects were different, i was a bit dizzy, had awful constipation and gave myself piles as a result so always always address this before it happens with lots of fluid and nightly senokot I found worked from the day before i had the chemo and it didn’t happen the next time. I also had my white blood cell injections changed from the 5 daily dose to the one they give private patients which is a one dose as my oncologist thought this would lessen the pain from that and it certainly did. It made the chemo less difficult without that on top. My GP also gave me Tramadol pain relief which I didn’t need much but having the stronger painkiller made me feel better even if I didn’t actually take it alot. Also had some piriton which my GP said may help with some reactions but if not would atleast make me sleep!! With the 3rd one it was different again and although very tired and feel no energy left but that is more than bearable. Even after all this I know its worth going through, just listen to your mum, tell her you understand how she feels and keep doing all you are doing just a lovely clean bed, a soft mattress topper and a new very soft pillow can work wonders. Slather on the cream on her feet and ignore all the negative comments - i did it all - my daughters used to laugh and say that the evening news would say 'cancer survivor bludgeoned to death by despairing daughters!!!" Its only for a short time but its hard on you too, your mum doesn’t mean any of what she says about giving up - sometimes it just needs saying but hard for you, its you she staying alive for. All my healing thoughts love T xxxx