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Desperate and feel like walking away

36 REPLIES 36
Cackles
Member

Re: Desperate and feel like walking away

Evening all . My last taxingTax dripped it's way in today so that is it. Poisoning over., wine distributed and a large shop in Sainsbury's with 86 yr old mother and husband over and done with. Stocks of non healthy chocolate, cakes, biscuits, crisps, and carbohydrates of every shape and description bought . I an ready for the cornflour paste moth...or so I thought. Horrors. My lamb steak cooked with garlic, rosemary, red wine, onions, carrot and parsnip mash, green beans,broccoli and sauté potatoes tasted of NOTHING....only five hours and taste Gone....so unfair, my husband loved his.D...m chemo!!!! Do now in bed unable to sleep because of St. Eriod's and the missing sleep fairy he hires to disappear.
Instant Grumpy mood has fallen where there should be joy.....Why? What a strange drug. Husbands driving well criticised and then to find the Central Heating boiler had broken down and was oozing oil.... Greerrrr Heated blanket on and bed. To sleep perchance to dream of a better mood and the insertion of gcsf tomorrow .
Sorry ladies zi did say Tax bites in odd ways.
Cackles

Guest user
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Re: Desperate and feel like walking away

Hi Libby

Sounds like you are in a better place today.

I had my last TAX today and managed to cram in some Haagen-Dasz this afternoon before the chemo mouth re-appeared.

Mostly I don't bother with headwear. I have a wig but don't really think it suits me and can be a bit itchy at times. I live in a small village and everyone here knows I have BC so generally go out with the full Kojak (or Harry Hill, depending on your era!) Now that winter is coming, I generally wear hats but am going back to work on the 5th Dec and not sure my patients are ready for the bald look so it will be back to scarves.

Still tanked up on stroids but given that I only got 3 hours last night, think I might head to bed now.

Hope you have a good weekend.

Laurie x

libsue
Member

Re: Desperate and feel like walking away

Evening all,

I've had less pain today, still feeling exhausted but I've slept for most of the day, maybe I'll be standing outside the dark dark woods later! Hope I have company.

I've been thinking about all who had treatment today and hope you are all doing OK, and congratulations to those whose last treatment was today - it must be such a relief to know no more chemo.

Caroline is your avatar a picture of yourself? If so you look beautiful, surely the hair is yours not a wig? Wishing you all the best now chemo is over for you. Take care.

Cackles, thanks so much for clarifying a few things, a real help. Good to hear how much the helpline comforted you, I'll definitely call it next time I feel in need of professional support. Hope your treatment went well and the next few weeks are without nasty side effects. Look after yourself.

Alesta, I love your picture, it's loud and proud and good for you. I too am a baldy, in the house I go without headwear as it's more comfortable. Thanks for your tips. Take care.

BBB, thanks for sharing your experiences, helps me understand I'm not being over dramatic. You're now day 9 post last chemo, congratulations and all the best for a healthy future.

Has anyone heard of, or tried, Castor Oil treatment? My daughter advised me to try it; it's supposed to encourage your hair to grow back faster and thicker. I've been rubbing it into my scalp, eyebrows and eyelashes nightly, I'll let you know if it works! It's so cheap I thought it definitely worth trying afterall nothing to lose.

Take care everyone, and keep smiling. Hope you all have a good weekend.

Libby

BrainyBlonde
Member

Re: Desperate and feel like walking away

Just wanted to empathize with all the previous posts. I am now day 8 after my last Tax round of neo-adjuvant chemo and starting to feel like the Alien has packed his bags and is about to leave my body (probably via the toilet ha ha over the next few days - and good riddance!). I didn't have any injections with the Tax but have managed to get through despite feeling, during the first round, that I wouldn't be able to. What has really helped with reading the posts on this forum is that it made me realize that I wasn't such a total wimp after all. I felt so pathetic and felt that I must be making a mountain out of a molehill until I came on here. I feel that one of the worst side effects of Tax is the effect it has on your spirit. It really brings you down emotionally which makes dealing with the physical manifestations so much harder. Everyone I'm sure is careful not to frighten people but at the same time we need to acknowledge the reality of some of the horrible side effects because we know then that we are not alone. It has certainly made me feel better for knowing that. BBB

Guest user
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Re: Desperate and feel like walking away

Libby

Agree with Cackles about the helpline. I used it once when I was really distressed and the woman on the line was fab and spoke and listened for over an hour.

I also did one of their "Living with secondary BC" days in Birmingham earlier this year (they run all over the country) which was run by one of their nurse specialist and she was really great and answered a load of what I though were 'silly' questions in one of the breaks. I learned more from her in 15 minutes than in 4 months with my breast nurses and I learned that there are no such things as silly questions!

Stay informed and involved in your care. Good that your daughter is going with you. My husband always comes with me and takes notes. I have a little notebook and whenever I think of a question, I write it down to take to my appointment.

Laurie x

Cackles
Member

Re: Desperate and feel like walking away

Morning Supertrouper see you were trawling like me into the dark hours.. Your neo adjuvant means use of treatment agent before the main treatment. Strange because it IS the first treatment but it is no doubt it is a by blow from Surgery being the be all and end all..your chemo is given to shrink things pre surgery. I waffle it is the tax I take it all back for you but it might help others!!!!!

New girls I agree with everything Supertrooper says. Less people post if they are doing well than the minority that have problems. Peer support and the helpline are there for YOU when you are ready to use them . I did on many kccasions and Wlii call again happily because each call has been so useful and comforting.... I really mean that.

I am about to have my last Tax and I really don't feel worried. The unknown is the worst part of all of this.. The first step into an area out of your control. I have ice lollies to keep my mouth cold plus Iced drinks . Wine coolers to keep the finger and toe nails cool. So far I have had no mouth ulcers and I have lost no nails The lollies were a trick a Helpliner suggested who herself had chemo nine years ago.. Another Helpliner over twenty years post surgery for a large lump advised me to get my husband to ring and he now has chats with a gentleman from Wales who's wife had the same chemo as me. I needed a bit of research info and again they helped asking one of the Senoir Nurse Specialist for me. You don't feel rushed Just listened to.
Big Hugs
Cackles

Guest user
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Re: Desperate and feel like walking away

Hi libsue, I just found your post whilst I'm wide awake after Tax #3. I had 2 x FEC to start of which my first one was horrendous and I was violently sick for 24 hours.- the second one was a lot easier. They changed me to Tax on my 3rd chemo and did warn of aches but didn't warn how bad they were - again it was pretty horrendous so I called them the day after and I was advised to take ibuprofen 400 which helped a lot. I have to say that on my second and third Tax (third was just yesterday) the side effects have been much less with just a loss of taste and an upset tummy. My conclusion. Is that it's just the first lot of a new drug that your body just doesn't like - I could be wrong!
I hope you're next one isn't as bad but definitely speak to your onc nurse if you have bad SE's as guaranteed someone else will have had them and the docs will know how to ease it.
Caroline x

libsue
Member

Re: Desperate and feel like walking away

Hi Debs,

Yes, I am feeling much better, in particular my mental approach is stronger. Sunday/Monday/Tuesday I felt almost suicidal and didn't know where to turn, you know the score - chronic pain, exhaustion, feeling ugly and the rest, well thankfully I decided to turn to you ladies and I have never made such a great decision, feeling really pleased with myself for my fortitude, but feeling much more pleased and grateful to you ladies for pulling me out of the doldrums, you super people you. I hope in the future I can give back to others what I have been given here by you all.

Debs my husband is Italian, and although his command of English is brilliant he wouldn't be able to write things down at the speed necessary to keep up with what's being said, but as I mentioned my daughter will be accompanying me to my next appointment, so all will be well so far as remembering just what was discussed.

I think you are right re the sad stories, my cancer nurse told me not to focus on others as I need all my energy for myself, she said I have to believe my needs are as important as anyone elses no matter what their situation. I find it difficult though to reason like that, as I think I'm being a bit selfish focusing on myself, but you know that's another thing these wonderful forums have taught me - we all have a right to feel down, cross, bitter, fear, or whatever, but to benefit ourselves we should try to overcome these feelings. Well, for now I've overcome them and that's thanks to you all. Gosh, don't I go on!

Haven't looked at "standing outside the dark dark woods" yet, but I will.

Must go now and get some beauty sleep, that's a funny thought! How can I look beautiful with my bald head, dry cracked lips, eyelids which resemble a lizard, itchy spots on my arms and walking like a 100 year old woman? I'll tell you how, the first day I feel OK to go out I'll cover my arms, put vaseline on my lips (should look like lip gloss) pull on my gorgeous wig, haven't thought yet what I'll do with my eyes, though maybe cream eyeshadow, whatever I'll knock em dead - oh if only! But dreams cost nothing, and I hope I have a lovely dream, and you too.

Catch you all tomorrow, and all you ladies who are having treatment tomorrow I wish you well.

Libby

supertrouper
Member

Re: Desperate and feel like walking away

Libby, you sound so much better than when you first posted! Which is so good - you will gradually get your head round all of this and come to terms with what is happening.

My OH came with me to all my appointments and took notes so that I could read them afterwards - there is such a lot to take in!

Stay away from the sad stories - they won't help you. You will soon find threads (like this one) that you feel comfortable with posting in.

If you can't sleep take a look at the thread that is called "standing outside the dark dark woods"

I am going to bed soon - hope to read more of your posts when I get up.

Debs

libsue
Member

Re: Desperate and feel like walking away

Ahh, reading your post Laurie I've obviously got my adjuvants and neo-adjuvants mixed up, I should have said neo adjuvant. Do you think my neo adjuvant clinic appointment will be with my cancer nurse? The appointment is 30th Nov, the day before my next chemo, and I know I'll be having a blood test but I also have a clinic appointment. I last saw my Oncologist just before my last chemo, so don't think it's with him/her. Infact I know it isn't as I was told my next Onc appointment would be 19th Dec. I must sound so under informed and perhaps a little naive, you all appear to know so much more than I do. When I've had past appointments the news has been so shattering I've not been able to stay fully composed, and therefore haven't thought to ask important questions. BUT, that won't be happening again oh no no no, which is why my daughter is accompanying me to my next appointment.

Cackles, I didn't ring the helpline but it's good to know the back-up is there should I need it, I'm hoping now it won't be necessary for this cycle, however if I'm feeling desperate after my next Tax I shall not hesitate in ringing. I have read so many very sad stories on these forums, and they made me realise there's people far worse off than me, people without family to support them. I read one lady's thread which was extremely sad, the poor lady has recently lost her husband who had a brain tumour, and she has now been diagnosed with BC, had a traumatic ride so far and hasn't even started chemo yet, in fact she's not decided whether to have chemo or have a mastectomy. Ass I'm now feeling able to cope with my own aches, pains and tiredness I would feel guilty taking the time of the helpline which could be given to those in more need.

I like your term for steroids, St Eroids, makes me realise they are our friends dishing out tough love. I hope you manage a good nights sleep. I'm still here as I've slept most of the day. I hope all goes well tomorrow.

Thank you to you both.

Take good care.

Libby

Cackles
Member

Re: Desperate and feel like walking away

Libsue. Other adjuvant treatments are hormone therapy eg Tamoxifen, arimadex,femara, zoladex etc and the targeted therapies like Herceptin. Not everybody needs these? But many do. Did you ring the helpline ? they would answer any queries you might have. They are very good at supporting us through this c...p journey. They can put you in touch with trained volunteers that have been through that which you have. There is also Peer suport for husbands, mine finds it very useful to talk to a man whose wife had similar treatment to me. If your husband would like to chat things over the Helpline is there for the whole family.
I so hope you have got that Tax train off your chest-- it is too heavy!!! Tax does have a sting in the tail and bites when you ,east expect it......but it does what it is given to us for and that is so important.
Sleep well .I am awake because of the steroids or as I prefer to call them St. Eroids because they protect us from allergic reactions.
Cackles xx

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Re: Desperate and feel like walking away

Libsue

Adjuvant refers to a treatment that is given alongside another treatment e.g. chemo and zometa for bone mets. Neo-adjuvant which is a term you might also come across is when you have treatment e.g. chemo to shrink the tumour, before the main treatment e.g. mastectomy.

Good to hear you are feeling better in your mind and body. Hang on in there.

Laurie x

libsue
Member

Re: Desperate and feel like walking away

Bless you both, thanks.

Good luck for tomorrow Cackles. I can't wait for the day I'm able to say 'my last chemo is tomorrow' better still, my last chemo was last month/year.

Best wishes everyone, and good health and happiness to you all.

Cackles
Member

Re: Desperate and feel like walking away

Libsue so glad you are feeling slightly better and more positive. The girls have all said everything I would. The first was interesting!!!!! but the second much better. I have my last tomorrow thus the steroidal lack of sleep.
Best wishes
Cackles

Mazzalou
Member

Re: Desperate and feel like walking away

Well done, Libsue

Remember - a trouble shared is a trouble halved.

Hope that you sleep well tonight and enjoy the soup!

libsue
Member

Re: Desperate and feel like walking away

Hello everyone,

I've had a better day today. I got a sound sleep last night and woke up with less pain, I do still have lots of discomfort in my hands, feet and lower legs but I can cope with that. Last night I slept wearing gloves and thick socks and they definitely helped.

The state of my mind is better too, I had no tears today. Congratulate yourselves ladies as your comments and support were a massive factor in helping me. The most positive thing I've done since being diagnosed is to join this forum where the understanding and support is wonderful. Thank you everyone.

My younger daughter has arranged the day off work for my next adjuvant clinic appointment, usually my husband attends all my hospital appointments but his memory isn't great (think like me he's a bit stressed out with all that's happened), my daughter I'm sure will remember everything, she'll ask relevant quetions and will be assertive, so I'm expecting to get more out of this appoinment. What is the adjuvant clinic please? Will it be a discussion with my Chemo nurse?

I am now feeling more hopeful and expecting to improve daily - hope I'm not being over optimistic!

My husband bought some adult Bonjela and using that in conjuncion with my prescribed mouthwash has helped, I still find eating painful but tomorrow my husband is making a soup so that should be easier to swallow.

Again ladies, thanks so much for your help, you probably won't realise just how much your support and comments have been a comfort to me, both practically and mentally.

Guest user
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Re: Desperate and feel like walking away

Hi Libuse,
sorry you have been suffering so badly.
While not as horrid as your experience, my first tax was extremely unpleasant to say the least. the next 2 have been amazingly ...ok... i think there is a bit of trend of finding the first the worst, and subsequent taxes being slightly kinder. Obviously that is simply something i've picked up on, not the words of a doc!!
I have nothing but praise for the medical team who look after me, but i still echo other posts in that you must be firm with your onc. I asked 3 times (in 1 meeting) for stronger painkillers for a migraine type headache on FEC and only on the 3rd did he agree.
The very best of look and wishing you drastically diminished side effects from now on!!
Cannoliwings X

nymeria
Member

Re: Desperate and feel like walking away

Hi Libsue,

I just wanted to echo what others have said. I did AC-T and managed reasonably well on AC but docetaxel was nothing short of a nightmare and looking back now (Dec 2010 to April 2011) I know there were lots of times when I was desperate enough to walk away and I ended up in hospital so many times but I did eventually come out the other side.

You really do need to talk to both your onc and the chemo department about all this so that they can do their best to help you get through it. Remember that you don't have to suffer - ask for help!

Meanwhile sending you a really big hug!

Nymeria xx

Guest user
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Re: Desperate and feel like walking away

Hi Libsue
Just wanted to empathise with how you are feeling, like you the EC was okkish, but Tax hit me like a steam train, with all the symptoms you describe and I remember in the small hours desparately watching the clock waiting until I could take the next dose of painkillers. However....... I hope to give you some words of encouragement to stick with it from my experience ( which was now ten months ago) For me the first dose was the worst and whilst the other three doses were not pleasant ( particularly mouth & lack of taste etc) I did manage to complete the course. I am glad now that I did, there were many moments when I waivered, but I just kept thinking that this was the gold standard for chemo and it would eventually be completed. I bought a single electric blanket and put this on the sofa while I watched rubbish TV and dosed on and off - this was comforting. Be kind and gentle with yourself ....Sending lots of hugs

Angela

elinda45
Member

Re: Desperate and feel like walking away

Just to say I had the same experience as Laurie. I had one tax without the injection and I was in hospital for 5 days with neutropenic sepsis being pumped full of antibiotics. Horrible and frightening.

Sore, itchy, watery eyes are common during chemo. I found the best thing was Murine eye drops for dry eyes (but not Optrex). They'd been recommended by an opthalmologist for another problem prior to treatment and they really helped through chemo.

Elinda x

Guest user
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Re: Desperate and feel like walking away

Just a quickie to say my 1st tax was unbelievably bad- I literally felt as though I'd been hit by a bus 😞 I dreaded the 2nd so badly but tolerated it so much better. I got lots of very strong painkillers but had less need for them. In my case, the 1st treatment was a real shock to the system but it got a little easier. Still not pleasant but more managable.
All the best
tina x

Guest user
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Re: Desperate and feel like walking away

Libsue

Yes the injection (Filgrastim - Zarzio) can cause aches and pains. I usually get some back pain which lasts for a couple of hours.

You can have TAX without it although after my first one, I ended up in hospital for 5 days with neutropenic sepsis. This doesn't always happen. Have a word with your onc or chemo nurse. You should be able to have adequate pain relief. Do you take the injections at night? I found that was the best time, just before going to bed so I could load up of painkillers and sleeping tablets.

The steroids are stronger on TAX because of the increased likelihood of an allergic reaction. I have 8mg Dexamethasone (Decadron) twice per day on the day before chemo and a further 2 days after that. I take them as early as possible (usually as soon as I wake up and then another 4 hours after that)

With regard to your question of EC Vs FEC, it seems to be an onc's decision based on the individual. When I went to the Marsden for a second opinion, they said EC x6. My onc said FEC x3 and TAX x3.

I have the itchy eyelids and crusty eyes. Haven't used cream, just bathe them in salt water a couple of times a day.

I know it's all pretty horrible but the treatment will be over soon. I keep telling myself that the worse it is, the more it is kicking the cancer.

When is your next one due?

Laurie x

libsue
Member

Re: Desperate and feel like walking away

Hello again,

After re-reading all your comments and digesting them fully it seems many of you have had bad reactions to Taxotere/Docetaxol. I read a thread on here re Taxotere and gleaned that the zarzio injections contribute greatly to the dreadful side effects. Does everyone on Taxotere need the injections? Is it possible that for my next Tax cycle the injections won't be necessary? I'm sorry to fire all the questions but you all appear to be more informed than me. I also learned that the steroids prescribed when on Tax are stronger than when given EC, another question sorry - why do some of us start our regimen on EC and others on FEC?

I forgot to mention on my first post that I also have sore, itchy eyelids, did anyone else suffer this side effect and if so were you prescribed a cream for it?

I cannot fully express how grateful I am to you all for your support and help, thank you so much.

Libby

Mazzalou
Member

Re: Desperate and feel like walking away

Helo Libsue

I tell people that Docetaxel has a 'sting in it's tail'.

My chemo followed on from my masectomy with reconstruction and I started with 3 FECs followed by 3 Docetaxels and I know which of the 2 I prefer!!! OK - the FEC made my veins collapse so that I now have a sub-cutaneous port inserted as I am on Herceptin for a year, and I was sick on the 1st evening after FECs 1 & 2, and it did give me a headache, but compared to the 'Dreaded Docetaxel' FEC is a doddle. In fact, I felt so awful after my 1st TAX that I had to delay my 1st herceptin, and I felt as if I had doubled in age overnight! To make matters worse I must have been grinding my teeth so hard during that night that I managed to break a tooth! My legs even ached in bed.

I am now 6 weeks after my last Docetaxel and the dreaded chemo gremlins are still hanging on in there! I have swollen ankles due to fluid retention which is making my legs ache and feel like lead weights, I feel and look like a barrage balloon, and my feet and fingers tingle like mad. I feel worse now than I did after each of my docetaxel doses, and my chemo nurse said that this is often the case with residual chemo effects hanging around for a couple of months after the last chemo dose. My hair is beginning to grow back, albeit fuzzy so that I look like a 'fuzzy-wuzzy' badger! I will never, ever complain about having a bad-hair day again!!! However, my eyebrows seem determined to continue to disappear going the same way as my eyelashes. My nails are beginning to recover with pink bits pushing out the horrible discoloured bits, and the hairs on my legs are putting in an appearance once more!

I start my radiotherapy tomorrow so, and am due to have 15 sessions, the last being on December 7th so at least I can look forward to all my treatment (other than the herceptin which is not chemo) being over before Christmas.

I know that this doesn't sound very inspiring, but stick with it - if it didn't do the job then we wouldn't be given it. At your next pre-chemo session tell your chemo-nurse how you are feeling and I am sure that they can come up with some way of alleviating your symtons, but don't suffer in silence!

All I can say is that at my very first appointment with my Oncologist way back in June I was told that the chemotherapy treatment I was going to receive was referred to by the initials of the drugs in question – FEC-T. For those of you who are fans of Father Ted I would say that never was a treatment so aptly named!

Slendablenda
Member

Re: Desperate and feel like walking away

Libsue, what you've written on here could have been me a month ago. My Oncologist gave me the option of not having the final TAX because the side effects had been so severe. I opted to go ahead having come that far. It's now just over 3 weeks since my last one.
There is light at the end of the tunnel.
Although I still have some of the side effects they are diminishing and this week I have had a couple of days when I feel more like my old self
which makes me optimistic that things will continue to improve.
I ope they do for you too. TAX is tough, but you WILL come out the other end.
Good luck.

Lavenderlassie
Member

Re: Desperate and feel like walking away

Libsue,
Good to hear you Have a Plan. And lovely family help.
I did not have Tax, had FEC and had Filgrastim imjections all the way through. In the first cycle I had a big reaction to the Filgrastim with bone pain, big shakes and generally feeling ill. It was never like that again, was as if the first kick up the b*m to my bone marrow hurt but after that it just chugged along. Here's hoping that it might be like that for you with the Zarzio and so "only" Tax effects from now on. (I know, I know, don't shoot me ladies on Tax! I envy you for the good effect on the cancer but not for the s/es)

libsue
Member

Re: Desperate and feel like walking away

Hi everyone,

Thank you so much for answering my plea for help, you are all wonderful, it helps tremendously hearing from those who truly understand.

I apologise for my late response, I went away to soak in the bath followed by dinner. My husband cooked a beautiful meal (he's a chef) unfortunately I couldn't do it justice as my mouth hurt so much, I did manage to eat grilled fish but not the veg.

I am going to take your advice on board and discuss how tortured I'm feeling with my Oncology team. At my last appointment with the Oncologist, which was when I was informed my prescription would be changed to Docetaxol I felt rushed through the discussion and things weren't fully explained, after reading your comments I'll make certain that doesn't happen at my next appointment.

To answer some of your questions posed............

I am scheduled to have a further three Docetaxol cycles. I do have wonderful support at home, my husband is very helpful and my daughter is always ready to come round at the drop of a hat if necessary. My tumour is 5cms and grade 3.

Many thanks for all your tips and advice, and I shall be putting all into practice.

I will keep you up to date with my progress.

Thanks too to Lucy BCC for giving me details of the site helpline which I will ring tomorrow if still feeling low and desolate.

Take care everyone, and wish you all future happiness and good health,

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Re: Desperate and feel like walking away

Libsue

It's crap but it needs to be done.

I have my last TAX of 3 on Friday. Ended up in hospital for 5 days after the first and the second was worse than the first. Like you had awful hot and cold spells and on day 3 and 4 didn't get out of bed, except to go to loo. I took co-codamol 30/500 and ibuprofen regularly for the pain and zopiclone 3.75mg at night to help me sleep. Also hot showers were good before bed as El Kat suggested.

Hot water bottles were a big help for the leg pains, cream for the peeling feet, hydrocortisone and vaseline for my crusty nose (and lots of tissues) and chlorhexidine, bonjella and igloo for the mouth ulcers. Eating was difficult and over the course of my chemo I have lost 10kgs.

There is absolutely no need for you to be suffering with pain that makes you feel like giving up. Contact your onc / GP / BCN - whoever you need to, to get what you need and don't let them fob you off. Take someone along for support if you have to.

I had an argument with a locum GP who didn't want to prescribe me sleeping tablets and had the cheek to ask if I had tried any over the counter remedies (like Nytol). Hmmmm lets see, I have stage IV breast cancer and he's worried about prescribing sleeping tablets when I am having some of the most toxic drugs known to man! Sometimes you just need to be firm.

Good luck and hang on in there.

Lauire x

elinda45
Member

Re: Desperate and feel like walking away

Hi Libsue

I really feel for you and so sorry to hear what you're going through.

I don't often post about my chemo because I had such a terrible experience. I ended up having 4 x FEC and 4 x Taxotere and I don't honestly know how I got through except a very strong will to survive.

I was very, very sick with the FEC and lost 2.5 stone. The taxotere gave me a lot of pain mainly in my back and severe headaches, dizziness, sickness and loss of appetite,terrible weakness and skin rashes. After my first tax, I had a severe reaction and my dose had to be cut by 25% - you could discuss this as an option with your Onc. The second time I developed neutropenic sepsis and was hospitalised. I then had a high temp after each taxotere.

But I did get through it, terrible as it was. I kept thinking to myself if it's making me feel this dreadful then it must be destroying any cancer cells. Knowing that other women had got through also helped me a great deal.

I had various types of painkillers. Mainly I had high strength co-codamol, other times tramadol and also oxycontin.

You are though having some very specific side effects and you do need to talk these through with your Onc. Before your next appointment can you speak to your chemo unit or ring your Onc's secretary to explain what you've been going through? They really do need to know before your next session. Perhaps if taxotere isn't an option then you could have more FEC.

I found you do have to be quite forceful in explaining the side effects and how bad you are feeling. Looking back I wish I'd been better at doing that instead of putting up with so much.

I do wish you well.
Elinda xx

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Re: Desperate and feel like walking away

Hi Libsue

You sound like you're describing my experience of Taxotere to a tee.
It's horrible with the pain and the aches and not being able to sleep or get comfy, so my heart goes out to you.
It does end eventually, honestly it does!

Try hot water bottles on your cold parts, they did wonders for me. Take painkillers an hour before bed and keep some on your bedside table too.
Have ahot bath or shower before bed if you can too, I found I couldn't get out of the bath after.... whoops. But hot shower felt amazing in de-aching me.

I was given morphine and codeine, I found they both worked really well (not to be taken at the same time). I hobbled like a little old woman and I was miserable as sin.

Do bear with it, I know you dont want to do it, but if you accept it, get what help you can and prepare for it happening it makes it easier to deal with, I wasn't working through it.

So sorry you're so desperate, I felt the same. Keep with it, it's clearly having some effect on you, thats all that kept me going at the time xxx

Peachez
Member

Re: Desperate and feel like walking away

Hi LibSue, you're having a horrid time of it from what you say. Make sure they know about your side effects before the next dose, as others say, they can reduce it and it'll still be effective. Another trick TAX likes to play is to make you feel awful and depressed, (I was terrible after my first one with this)so bear that in mind, it won't be helping! It lifted gradually from days 5 to 10 for me.

and by way of encouragment, I couldn't walk more than 15 mins at a slow pace on TAX - in fact my feet got so sore sometimes I could barely stand - my last dose was end of April and I'm back to 3 miles in less than 50 mins, the dog can hardly keep up!

sarahlousie
Member

Re: Desperate and feel like walking away

Hi Libsue,

I know its hard at the moment and by the sounds of it your not having a great time on the chemo, but try and stick with this, it does work, I had the same regime as yourself and my primary tumour went from 6cm to 2mil in size after chemo, all the drs were very pleased with the response and that is what you want to reduce the tumour so they can operate on it, was your primary a large tumour? Speak to your onc and ask if they can reduce the amount of taxotere you are receiving, my last lot of chemo was reduced because I complained of numb fingers and toes, so they reduced the amount, Its all so hard on us but these treatments do work chemo does shrink cancer and the ultimate goal is to rid ourselves of this disease, so we have to stay strong and keep mindful that we are doing all in our power to heal ourselves. If I can get through it you can and you will.

Sending lots of love and light and healing vibes
Sarahlousie xxx

Guest user
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Re: Desperate and feel like walking away

Oh poor u xxxxxxxxxxxxxxxxxx

I posted like you on TAX , i too was deaperate and thought they were trying to kill me !! Unfortunately some of us suffer on it , i found that by taking the pain meds before my chemo and building up a level helped a wee bit . By day 8 i seemed to slowly pick up . I am sorry i can't help more , but i do feel for you . I hated Tax .xx I am now 4 weeks post MX , so we do get there .

I hope someone comes along with more tips . Take Care.

xxxxxx

supertrouper
Member

Re: Desperate and feel like walking away

Hello libsue

Sorry to read that you are having a bad reaction to Toxotere. I have had 4 EC and 3 Taxotere - will be having my final one next Wednesday. Like you I had a very bad experience with my first Tax - and they reduced the dose for the third. My second Tax wasn't a harsh as the first one. I think it was just my body reacting to the new drug and Taxotere is a very toxic drug! However, I saw my Oncologist yesterday and after examining me she confirmed that the tumour has shrunk so much that all she could feel was a very slight thickening - so the Chemo has done what it is supposed to do.

I know you are feeling dreadful - but it will pass and it will be worth it. I find that after the first 10 days I start to feel a lot better.

Hang on in there - read some of the other threads about Taxotere - there are a lot of ladies in here who are going through the same treatment as you and we will support you every step of the way.

Guest user
Not applicable

Re: Desperate and feel like walking away

Hello Libsue
So sorry to hear this. I had this stuff (or similar) after my fifth cycle of FEC as my blood count was so low. They didn't warn me it might hurt and i ended up like you in agony. I only had three injections though and so with painkillers it got better and then i only had one more cycle of FEC to do so i declined any more injections.
How many more cycles do you have to go?
My only advice to you is to try and stick with it - but keep in close touch with your BCN to make sure they know how bad it is for you and so they do all they can to help - because i think you will regret it if you walk away. They might be able to change you on to something else.
You dont say what support you have at home but dont hesitate to lean on people. My experience was they were so pleased to have something they could do to help me through.
I survived chemo and i am no hero - I moaned and complained all the way through - but I survived so you can too.
Stick in there if you can - we will all be rooting for you!!

Lucy_BCC
Member

Re: Desperate and feel like walking away

Hi Libsue

I am sorry to read that you are having such a difficult time with your treatments and just wanted to post our helpline number which you may wish to call for further support and information, the lines are open 9-5 weekdays and 9-2 Sat on 0808 800 6000

Take care
Lucy

libsue
Member

Desperate and feel like walking away

Hi everyone,

Briefly, I've had two EC chemo sessions and on the whole my body dealt well with the side effects. Last Thursday I had my first Taxotere/Docetaxol, gosh have I felt dreadful since! For the first five days I was injecting myself with Zarzio. Thurs/Fri felt OK, Saturday night my body started to ache, by Sunday I had chronic aches and pains in every part of my body, and although exhausted I couldn't sleep for longer than two hours as the pain woke me up. The pain was literally everywhere in my body, from head to toe, I even had earache and jaw ache, eating and drinking was difficult as it hurt so much when I opened my mouth. Monday I rang my Breast Cancer Nurse who arranged a prescription for very strong painkillers to be collected from my GP, and they helped alleviate some of the pain, Monday night I slept well. Yesterday and today most of the pain has been manageable, but I have pains in my fingers, calves, feet and toes; difficult to describe the pain but feels like my joints are frozen, and bending my fingers is painful, feels like it could be the nerves which are affected. Last night I couldn't sleep as my body was warm but hands, feet and lower legs felt cold.

I am now feeling desperate as I cannot get any relief from the pain and exhaustion. I feel like running away from my next chemo cycles, as I cannot face going through this all over again, and wonder if it's worth it! Should I say enough is enough and hope a mastectomy will kill the cancer, or is my treatment the only solution for a healthy future.

I would appreciate others comments, so please, please someone give me the benefit of your experience.

If I sound desperate it's because I am. Apologies if I haven't articulated my symptoms etc very well, but my concentration and memory are poor at the moment.

Thanking you in advance.

Good wishes to all.