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Help coping with Docetaxel/Taxotere .... Please.

Red1
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Hi. I was diagnosed with grade 3 breast cancer in may. A swift and successful op was followed by FEC-T chemo. I've had all three FEC sessions and coped really well and was positive and active.  I had my first Taxotere on Monday and am not coping at all.  Whole body ache , muscles and joints, headaches, kidney pains, swolen glands, lethargy and over emotion.  I spent yesterday in A&E with chest pains which turned out to be heartburn and anxiety.  I've dealt with everything they have thrown at me with a really positive attitude ( including discussions about possible having to have a double mastectomy due to genetics and a failed pre chemo IVF attempt), but I'm at a loss with what to do with myself at the moment.

I did start taking codeine and paracetamol but that caused severe constipation and bowel issues.

Basically I'm at my lowest and need positive boost.  A week later and I still can't get out of bed!   I've two more sessions of Taxotere and want .... Need to get myself prepared for the next one. 

Does anyone have any suggestions of anything that can help me .. Please.

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    Hi Red, 

    I just had my first Docetaxal dose over a week ago.. Have you rang your chemo hotline? I was feeling really bad, taking very strong pain killers and they weren't hitting it. Did they check your bloods in A&E?? Anyway, like you im a very positive person, was dealing very well with it all, had 3 rounds of EC first.. Now two rounds left of Docetaxal.. Im floored.. I ended up in hospital 4 days after treatment.. So my advice is dont be scared to ring the chemo hotline, they know what to advise and whether or not you should go in.. I wish I rang sooner.  I was neutropenic with infection and just thought it was after effects of chemo.

    So always stay in touch with the team.. Im out now on antibiotics.. I have to agree, as much as I dont want to get off the couch.. I make myself walk around the park everyday and try to do some laps.. Its atiny park but at least i know Ill make it home.. Im a single mum, so I have to get up.. My boys are 5 and 8...ive family support, but id love someone to help me 24/7... Its a lot to deal with... But as I say.. We're now closer to the end.. 2 more to go.. Then an operation for me... And immunotherapy for a year but chemo and op are the big ones to get over.. You'll get through it.. And there is life after chemo. Keep the thoughts positive.  Take pain killers when you need them. And a bit of movement / chatting / getting out of the house helps.. Even if it is to moan

  • Offline in reply to Deviner
    Hi, I completed 4 doses of EC (1 every 3 weeks). I'd go around 10 days of feeling crap, nausea, constipation, diarrhea, mouth sores, joint pains, metallic taste in mouth; I hated it! But by my third week I felt somewhat normal, would tire quick but normal. Then i stared my 4 doses of docetaxel. I've had 2, 3rd one tomorrow. Scared to the point of not being able to sleep properly. The pain is horrendous and for me it moves from anywhere to anywhere. Paracetamol Ibuprofen/codiene didn't work. Pain starts on day 3 and lasts 6 days. I've been prescribed Gabapentin, spoke to my oncologist after the first docetaxel. It takes the edge off the pain which means taking paracetamol with it actually works. So got it again. Other effects for me are tingling in feet, skin peeling off, mostly in feet, toe nails highly sensitive. I have lost ALL taste buds. I can smell but can't taste anything! It's horrid and depressing. I struggle to drink which I know makes things worse. I have severe bloating which is so uncomfortable its almost painful. My skin, when I rub my fingers or touch my face, arms, legs etc feels different, almost plastic-y! And there is no normal feeling throughout the 3 weeks. I was informed that I would need a mastectomy as to the way the tumour is growing in the breast. I was initially told to have the chemo in the hope they could conserve the breast! So I queried the need for the remaining 2 docetaxel. Been told its best to as it helps the operation be morebsuccessful. So going through the rest of the horror. Operation will be 4 weeks after my last dose. Then I will start on radiotherapy. I haven't had much information about that yet. I'm fortunate in that my husband is self employed. But I'm on SSP and we can't afford to have him stay at home every time I feel crap. I have other family and friends help but they have their own lives that need to go on. My kids are 10 and 5. 10 year old is self sufficient. 5 year old not there yet. Fellow sufferers, keep your hopes up. We can get through it! Get the B**tard out for good! We have each other even if we don't know each other. Sorry for the extended message but reading these chats means I'm not alone and I'm not a hypochondriac (as believe me I've thought it) Best of luck to you all xxx
  • Offline in reply to MRah

    Your story kinda reads similar to my wife's when she was on Docetaxel. Except she would always end up in hospital as her temp would spike along with the joint pains. They had no idea, and still have no idea why her body was reacting the way it was. But they had to keep treating her with antibiotics on the off chance it was an infection. an infection was never found, though. Painkillers, she had all the same things as you. None worked. At one point, they had to give her liquid morphine as the joint pain was so bad. She only took that a couple of times. Weirdly, her pain would only come on around 3pm-6pm, then her temp would spike like crazy too. So into hospital she went each time.

    An absolutely horrid drug. All that said, she was down for a mastectomy too, except, the docetaxel absolutely obliterated the cancer. So she then got a lumpectomy. No cancer cells were found, and she was deemed "no evidence of disease". That finished months ago, but she's still whacked by the docetaxel on and off. But it was worth it when looking at the larger picture. As horrid as her experience was, it had its payoff.

  • Offline in reply to ProfBaw

    Hi ProfBaw,

     

    It is a horrid drug and going through the side effects of chemo is just unbearable at times (for me and some others unfortunately!). Sorry to hear your wife suffered as she did. I often feel like it's too much and want to give in. But I know that's just wrong. Perseverance!! - currently getting pumped of the lovely docetaxel!

     

    That's really great that she had that positive response though, seems worth it and hopeful for the rest of us! I know everyone is different. 

     

    Carry on being her strength and pass on my love to her xx

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    I am currently fighting breast cancer....I had abreast surgery for a lumpectomy on my right breast in January, they said initially they had removed it all, good to get back to life.....not a chance.....they said then that they wanted to send my tumors off to the USA for the oncotype DX test which returns in 2 weeks to see if I need chemotherapy or just luckily jump straight to radiotherapy, they were very sure radiotherapy would be all I needed along with hormone replacement pills ....I had just got engaged and said I would wait to book my wedding if this was the case to be sure.

    I was then told after returning after the 2 weeks that my rest hadn't returned and that I should go ahead and book my wedding as they feel I should be good for radiotherapy.....they booked me in for another 2 weeks....no results still booked again for another 2 weeks but then suddenly they wanted me to go through chemotherapy options and sign the paperwork for it.....well....this wasn't even a thought on the last appointment....so this scared me....deposit paid down for the wedding, photographer, venue stylist paid for cake deposit made and dress bought etc.....well.....it appears that apparently my tumors were not sent off and would never be, as my cancer was grade 3 stage 3...I would definitely need chemo.

    I was devastated.....as anyone is.....I was told this on the phone whilst I was checking for my results...I was then asked on a Friday this is, to nip to hospital as they want to take my bloods for me to start chemo on the Monday!....well....this went down like a lead balloon as you could imagine as I now had 3 days to prepare for chemo and was on the phone listening to this news whilst out with my fiancé and children looking for flower girls dresses and suits in the middle of town! I broke down and must have looked rediculous crying in the middle of town with my family...

    Now when they were getting me to sign the chemotherapy paperwork a couple of weeks prior they stated that I'd be on mild chemo and would be ok for the wedding and the side effects I shall be used to by then....3 cycles 21days apart of Epirubicin and cyclosporine, and 3 cycles of T doxetacel.....I had no idea what this was but when I turned up at the hospital chemotherapy daycase....I was told it was the red devil chemo for the first 3 cycles and to be prepared for losing my hair and energy and lots of bone and joint aches.....fun times!

    Well I lost so much hair in sections I ended up buying a wig...still got a wedding day to go ahead with....and thankfully after my third cycle lost a few lashes but nothing major and a few eyebrow lashes...I can cope with this.....but the bone aches joint aches and feelings worthless with no energy past midday on the daily I was not doing well.

    I found out that it was best to take my injections for the five days at night time as I was feeling super tiered and ready to sleep, after taking ibuprofen and paracetamol and waiting for it to kick in prior to giving myself the jab, then laying down to sleep the injection off....I did this from cycle 2 and now 3. This worked for me but meant I woke up with a headache and sore breasts from surgery spots and scars...throbbing all over and body weakness to the fullest....I have 2 young children to wake up and get ready for school Mind you....so this took its toll for sure.

    I am now 6 weeks away from my wedding day and 2 weeks away from my first of 3 doxetacel cycles to end my chemotherapy. 

    I am so scared.....how am I going to cope for my wedding....how am I going to be able to cope with my kids....and I am seriously wondering if I am going to be able to just cope in general reading all the side effects, this red devil chemo has killed me....and boy have I struggled daily to just do washing pots cook n clean...

    I feel mood swings are a major issue for me right now I go from not talking for long periods of time to just not being able to smile through funny things etc....is this normal? Is this going to get worse?

    I've been with my man for years and this wedding is long awaited, but I don't want to be struggling with everything but all paid for now! 

    I'm so scared it's rediculous and worry how I will cope, I just wanted to share my story and thank others for being very honest with us about everything they're going through.....we're not alone....others are dealing with much worse and we have a lot to be grateful for I get that....but my scared levels for this next 3 cycles is scaring me more than when I was told I had cancer and needed to lose half my breasts to get rid of it. 

    It's nice to get this all of my chest and sorry again for the rambling....

    It's great to have a forum like this to just be honest about my thoughts and feelings.....love to you all! Don't give up! We got this! We shall prevail and eventually be us again! ️ ️

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