Does anyone have any tips for surviving this? Up to bedtime yesterday I was saying that I was coping really well with no side effects. Then I woke up at midnight in agony - from a nightmare that I was being tortured. The pain was just extraordinary. I think I had a panic attack as well. I woke up from sobbing in my sleep.
I can’t take Ibuprofen, my partner has a bad cold so I’m keeping an eye on my temp which limits how much paracetamol I dare take. Luckily I had one lorazepam left (given them to take with the steroids) and a couple of codeine from my SNLB. That gave me 5 hours sleep before the pain woke me up again. Like the worst sciatica down all 4 limbs, and every joint feels like it has been hit with a baseball bat.
I’ve tried warmth, tonic water, mindful breathing, keeping moving, and also the above drugs. Any suggestions for what I can ask the doctors for to help me get through this? I took my last codeine at 6 this morning. I have a check up at the hospital, to get my SNLB results, this afternoon.
I know I can get through this, I know it will pass, I know that it is worth it. I want to live. But I was demented with pain last night and earlier this morning. I’m still in the kind of pain that even a toughie would take painkillers for, but it is a lot lot better than it was.I’m scared of what will happen when this morning’s codeine wears off. So 2 questions:
What can the doctors give me? What else can I do to bring the pain down? I will try anything!
EDITED A FEW DAYS LATER:
I’m pleased to report that it does get better and that I am now through the worst. Here are my top tips which I have put right at the top of the thread to make it easier to find. I’m not a doctor and I’m not advising you, just telling you what I did The advice & support below is lovely, but if you have found this as a result of the kind of searches I was doing hysterically on Sunday night, here’s the summary:
It does pass - you just have to get through it.
Proper pain relief is essential - ask your oncologist or your GP for something at least as strong as dihydrocodeine - Tramadol if they will give it to you.
Paracetamol and ibuprofen can help but they are nowhere near strong enough on their own. If your doc won’t give you a codeine based painkiller then if you mix the full does of paracetamol & codeine with the full dose of ibuprofen and codeine, the codeine adds up to about 30mg which is a half dose of the good stuff.
As soon as you start to feel joint or limb pain, take the max dose of painkillers and keep taking them every 4 - 5 hours in daylight hours. The info leaflet in the box will give you the real maximum dose, which may be higher than your Dr has prescribed.
Keep on top of the pain, easier and lower dose to keep topping up than to deal with an outbreak of pain.
My partner had a bad cold and I felt ill as well, so I took paracetamol only every 8 hours so that I could keep an eye on my temperature.
Stay in bed on the bad days - it feels like flu, so treat it as flu.
I found that a warm bath helped, but if the water was too hot (how I like it normally) if made the joint pain worse.
Rest the joints. They are inflamed - so don’t stir them up further by going for a walk. But when the pain has dropped then get moving again.
Other things I found on the web - take Clarityn, drink tonic water for the quinine. I did those and who knows if they made a difference.
Read about other people’s exprience with chemo - after I did that I realissed that this really would pass. that stopped me from panicking so much and actually when I relaxed and stopped panicking the pain was not so bad.
Hi,sorry your having the bad pains,I had the same when I was on docetaxol I was given co-codamol and although they made me very sleepy and a bit spaced out they really helped with the pain.Really hope the pain eases soon,and good luck with your results.All the best Melxx
Take the maximum strength of whatever painkillers you can tolerate - if necessary get some strong ones from the doctor. Don’t wait for the pain to come back before taking the next dose - it is much easier to prevent pain than to deal with it once it is there. This might not be much help this time, but for your next tax anticipate the pain and start taking the painkillers first. This is not a time to be frugal with the pain meds, take them regularly, as often as allowed, for a few days, to get you over this part of the cycle.
AAAAARRRGGGHHHH!!!..the tax truck!!!..it hit me after 3 days…had first tax on a tuesday and felt OK…felt OK weds…thurs…then on the friday morning I got up and had been run over by a steam roller…hit by a train…I was in agony…as RR says don’t be frugal with the pain killers…I took ibuprofen as it was all I had in the house but got stronger pain killers from my onc…Please mention this to whoever you are seeing this afternoon as you need all the help you can get to keep the pain under control…if it’s any help…my second and third tax were not as severe with the se’s as the first one…keep an eye on your feet as well as I had a burning sensation in my feet and a lot of the skin on the soles came off after 2 weeks…best wishes…M
My doctor gane me Tramadol for the Tax pains, they are dreadful so feel for you x take whatever gets you through its not the time to be a hero I hate taking pain killers but could not have survived tax without them, it does get better hun x
Hi Fiona , I was admitted hospital with the pain while on tax , like you it was agony I was demented with the pain and lack of sleep, they put me on morphine but it took afew days for it to take even the edge off, I think you might find out its nerve pain and not joint/muscle pain, just a week or so after I finished rads the pain came back wasn’t sure if it was herceptin or Letrozole causing it, the consultant told me to take evening primrose!!!Grrrr don’t think she was taking me seriously as nothing seemed to dull the pain,in the end went to ,y GP and she thinks it’s Peripheral neuropathy caused by the chemo and meds she put me on Gabapentin And the difference in only a few days is such a relief, so maybe have a chat to your BC nurse or onc as it might be nerve pain and not muscular. Xx
I had this with my 1st Tax 2 weeks ago and just like you tried to survive without pain relief but it got too much and at 3.30am on a Saturday the pain in my knees was agony. I took paracetamol that i had at home then in the morning went and bought Ibrufen. By mid afternoon i had called my hospital to ask what else i could take and they told me to call out of hours doctors and request something as you cant buy anything stronger over the counter. I was given Codeine but the lady said if that didnt work i could try Co-codemol or Tramadol. The Codeine seemed to make it more manageable for me but it took me 2 weeks to recover from that dose. My side effects included nose bleeds, oral thrush and mouth ulcers as well as the usual bone ache and loss of taste buds. Hope you feel better soon.
Thanks everyone. Just back from hospital. Surgeon told me to take paracetamol and I just broke down and cried. Eventually he agreed to give me 3 days worth of codeine. BCN was lovely and said to ask the oncologists for something beforehand next time.
Best news though. My biopsy was clear.
Hi…assuming this is your 1st Docetaxel? If so, the start to take painkillers - i alternated paracetamol/co-codamol and ibuprofen/voltarol every 2 hours (check with your team) - 2 or 3 days before your next chemo. This worked for me, and I felt much less pain 2nd and 3rd time. Also if you have had another chemo regime before TAX the pain is exacerbated as the other chemo is still in your system, and if you have the GCSF white blood cell boosting injections, this also makes the pain worse :(. Great news about your biopsy i am 3 months post chemo and feel great with a few minor side effects that will eventually abate…but itnfeels like a dim and distant memory…good luck xo
Hi ladies
I have my second dose of docetaxel tomorrow. I saw oncologist today and complained bitterly about side effects. My main problem was diarrhoea (for about 10 days), I did have joint/muscle pain but believe me even that pain was overshadowed by the tax trots. I digress - after my first dose I was given tramadol by the chemo nurse along with the booster injection (to be administered by me) - didn’t ask for the tramadol so I assumed it was standard practice and did take them so probably helped in keeping pain under control.
They have decided to reduce my dosage from 100% to 75% so hoping things won’t be as tuff this tine round (to be honest, when I spoke to onc she said that the team were reducing the dosage for most patients so I can only assume that others did their fair share of compaining) - onc also gave me Loperamide to help with trots. Over the past 3 months I have taken more pills than I have during my lifetime (and I’m 65). I was probably a bit of a martyr in that I would just suffer thinking I’ll take a pill if it gets any worse, not any more I take them before the pain starts. They told me this after my mastectomy, take the pills, don’t wait until the pain starts, easier to control before rather than get rid of it once it starts.
May all your SEs be minor. Take care all.
Maggie
I would also start on the painkillers early, I would have my treatment on a Tuesday and by Friday midnight the side effects would kick in so I would start the painkillers Thursday night, and build them up, then by Tuesday/ Wednesday I would start lowering the dosage, you must keep on top of the pain because when it gets a hold on you it’s really hard to cope especialy when you have all the other side effects. X
Such great advice. Thank you so much. You are so right about starting to take painkillers before it starts. I’ll know to do that next time. Thank you. It was great to be able to have this online conversation.
I’m sorry your having such a tough time Fiona, that sounds really bad. Speak to your onc, I know people who’s steroids were gradually stopped instead of just stopped and that apparently helped. I got strong cocodamol from my gp that def helped and when I spoke to my onc she told me not to be a hero, take what you need when you need it. It def gets better I promise and I’m on my second lot and found the tiredness worse than the pain second time round. A hot shower helped me, plus hot water bottles, lying down, not pushing it too much, having some energy drinks helped too. It’s a hard one for side effects with the pain and mouth issues and stomach issues!
Hi! Starting Docetaxel in a couple of weeks and trying to get myself prepared! Thanks for all the pre-warning and advice, no doubt I’ll be back on then for inspiration from you brave people who have already been there. Thank goodness for this forum, good luck to you all xx
I’m pleased to report that it does get better and that I am now through the worst. Here are my top tips which I have also put into my first post. I’m not a doctor and I’m not advising you, just telling you what I did
The support and practical advice above was a lifesaver.
Little Bear - sad you are going through this but happy you have found this forum. It was pretty bad but it didn’t last more than a few days. I hope that your experience will not be as bad as mine and I hope that the points I’ve written below are helpful.
It does pass - you just have to get through it.
Proper pain relief is essential - ask your oncologist or your GP for something at least as strong as dihydrocodeine - Tramadol if they will give it to you.
Paracetamol and ibuprofen can help but they are nowhere near strong enough on their own. If your doc won’t give you a codeine based painkiller then if you mix the full does of paracetamol & codeine with the full dose of ibuprofen and codeine, the codeine adds up to about 30mg which is a half dose of the good stuff.
As soon as you start to feel joint or limb pain, take the max dose of painkillers and keep taking them every 4 - 5 hours in daylight hours. The info leaflet in the box will give you the real maximum dose, which may be higher than your Dr has prescribed.
Keep on top of the pain, easier and lower dose to keep topping up than to deal with an outbreak of pain.
My partner had a bad cold and I felt ill as well, so I took paracetamol only every 8 hours so that I could keep an eye on my temperature.
Stay in bed on the bad days - it feels like flu, so treat it as flu.
I found that a warm bath helped, but if the water was too hot (how I like it normally) if made the joint pain worse.
Rest the joints. They are inflamed - so don’t stir them up further by going for a walk. But when the pain has dropped then get moving again.
Other things I found on the web - take Clarityn, drink tonic water for the quinine. I did those and who knows if they made a difference.
Read about other people’s exprience with chemo - after I did that I realissed that this really would pass. that stopped me from panicking so much and actually when I relaxed and stopped panicking the pain was not so bad.
Hope you are getting through it all
For your info - more a future note rather than any use in your treatment, as you need the strong meds just now - there are alternatives to ibuprofen, I am allergic to ibuprofen but can take a very similar drug in the NSAID family called dichlophenac, which has the anti-inflammatory properites (unlike paracetamol) so is great for joint pain. It is sold over the counter under the brand Voltoral, but my GP gave me a load of it on perscription as Voltoral is rather pricey.
Hope you don’t need it!
Vx
The advice & support below is lovely, but if you have found this as a result of the kind of searches I was doing hysterically on Sunday night, here’s the summary: