I was diagnosed with stage 4 ovarian cancer a couple days before last Christmas so I am early in my journey and feeling very scared and discouraged. Since my tumor is too large, I can’t have surgery yet. I had my first taxol/carboplatin treatment last week. I had an allergic reaction shortly after starting. Then on days 3-6 I had severe sharp pains in my bones in my back and legs that broke through my pain meds. Now on day 8 I am still struggling with pain, bloating and nauseousness. Do you think my doctor should lower my dose? Is it normal to feel this awful? Not sure I can do more of this. Thank you for any responses.
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Buster98
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I am sorry you are having to go through this awful journey. But everyone on here is so helpful. Like you I had an allergic reaction after my 1st session. I remember the pains in my legs being really bad. Hoping this won't happen but I also broke out in a rash & ended up in A & E. They tried this combo again for round 2 but in minutes I broke out in a rash again. So they stopped the taxol
Like you I am stage 4 diagnosed last June. If I can help in any way fire any questions my way xx
Thank you so much for responding. I’m sorry anyone has to deal with this horrible disease, but thankful to have found this site. I do have one more question. I am having terrible bloating and pain with it. Can anything be done to get relief, or must I hope for chemo to take care of it?
Is your bloating in your abdomen? If the answer is yes. Ask for an ultrasound & if you have fluid it can be drained. I just had it done for 1st time today. Best wishes
You do seem to be having a few challenges, having a reaction first time is really bad luck.
Make sure you take the anti sickness meds as prescribed and contact your team if you have breakthrough nausea, there are lots of different ones they can try.
Bone pain is horrible and you need proper hard core pain relief, so if you are just using paracetamol, ask for something like cocodamol.
Report all side effects and discuss with your oncologist towards the end of the cycle. Chemo isn’t a picnic but it shouldn’t be ghastly either xx
Thank you so much for your response. Family and friends just can’t understand as much as they would like to. I will heed your advice and carry on. Much love.
I also had terrible bone/joint/ muscle pain with my first 3 chemo sessions. I got neuropathy on day 6 of first infusion and a year post chemo and it’s still the same 😭. I found that hot baths with Epsom salts helped to some extent along with a hot water bottle and a dose of co codamol.
I had my taxol lowered a couple of times because of the pains and neuropathy and it was removed entirely for the last round I just had carbo.
I took my anti nausea meds religiously and I must say I didn’t really have any issues in that regard.
If you are still feeling very bad I would get in touch with your chemo unit and ask for advice. In any event tell them exactly how you felt when you have your next round and they will adjust the dose. They build in a level of reduction to the dose so don’t worry you’ll still get what you need.
It did feel a lot more manageable round 4,5 and 6 so hold on in there xx Jen
Thank you Jen! I will make sure I have epsom salt ready for the next round. I have already mentioned to them how hard it was on me so hopefully they will lower it a bit. Much love and best wishes to you!
Dear Buster 98, others here have given great advice, just what I would say. Tell your oncologist and nurse team everything, they will help. I was so similar to you in regard to the pain in my legs. I’m stage 4a. It’s a difficult journey however there is advice love and support and understanding on here, plus Ovacome are wonderful if you call them. Sending you a big hug and luck and love xxxx
I had similar horrible bone pain after my first chemo session. It lasted approximately 4 days. It felt like a lifetime but it did stop. I got some strong painkillers in anticipation of the next session but, amazingly, no pain at all then. You never know, you might be the same x
Morning to youSorry to hear you are suffering, I can truly empathise with you as it is a scary place to be for sure.
I too was diagnosed with stage 4 just before Christmas and have had 2 rounds of the same chemo although I am also having Avastin. This is a targeted therapy they sometimes give to help stop the blood supply to the tumour.
I have also found the side effects to be pretty awful & at times feel the same as you. Pain, aching bones, endless stomach issues, for me nose bleeds most days, and I also got shingles this time round. There is no getting away from the fact that its a horrible journey.
I try to look on it that the chemo IS working and I know I will have days when I feel better, like right now. After 10 days of bad side effects I am now on my better week before my next round next week. You too will have better days and believe me you will appreciate them so much!
Having a positive mental attitude is difficult. What has helped me is keeping to a routine best I can, even on the worst days. Get up, wash/shower dressed etc. I try and walk even a little each day. Support around you is very important. Im blessed with lots of family & friends who will meet up with me on my terms when I feel up to it. Popping out for coffee, a stroll, whatever. Nature truly helps, the peace and quiet I love. Distraction, reading a great book, watching a box set or funny things on TV. Everyone is different and you know what may work for you.
I also connected with my local Macmillan centre who offer free therapies like reiki and massage or just tea & cake if you want and a chat! I also use an app on my mobile called CALM which has sleep stories, meditation and such like. I love it.
Its not easy and physical symptoms get us down, but look lets keep chatting if that will help, we are in this together.
Gosh! I am so sorry to hear about what you and other ladies on here have gone through. It is really awful. I wouldn’t wish this on anyone. Thank you for all your tips, and I will watch for you on here to keep chatting. Best wishes and more good days than bad!!
I agree that you should talk to your team (start with your chemo nurse) about how unwell you're feeling. Reducing the chemo dose is one option, but it may be that you just need an adjustment to the anti sickness medication (there are lots of different anti sickness drugs and it sometimes takes some trial and error before you find the one that works best for you). Similarly for the pain relief. Epsom salt baths are great, often very effective, so give that a try. Sending hugs!
Important to keep docs informed. There are always alternative options and you need to Marshall your forces for the long haul. Stay strong hugs from paris
Thank you!! Unfortunately I’m a very anxious person. It’s an inherited trait—lucky me. But I am trying to stay strong. All these responses from you and all the other wonderful ladies have been a blessing to me. Hugs to you too!
I remember having bone pain after my first two cycles of chemo ( carbo - taxol). They lowered my dose which made the following cycles of chemo more bearable. Hang in there, because medicine and chemo can be adjusted. Take care xx
Hi, sorry to hear you're having a rough time with the chemo. I've had two lots of the carboplatin taxol chemo and the very first one I really struggled with joint pain all over so much I was in bed for four days. The team changed my Filigastrim injection ( stimulates whits bloodcells) from single dose to five doses over 5 days which sorted the problem and I was able to get up and about. I still had issues with appetite and everything tasted awful but could at least get out for walks etc. I hope this helps and your team can resolve this issue, the first two weeks are rough but I always arranged something nice to look forward to in the third week which kept me going. Take care best wishes xxx
I’m sorry to hear you and other people had the same nasty bone pain I had. I just wish my team would have warned me it might happen. They probably didn’t want to put the thought in my head. The nauseousness was really bad from day 4 to day 7. I’m trying to fatten up now since I’m feeling better. Thanks for your input and best wishes to you too!
If they’ve given you neupogen (or something similar), that helps release white blood cells from your bones, that is the source of your pain. Take Claritin (Loratadine) a day or two prior to your infusions and keep taking it for 3-5 days after. This will definitely help with your bone and nerve pain.
My team told me about Claritin when it was too late. I will take it as you suggested and hopefully I won’t feel as bad this time. Thanks and take care!
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