Hi everyone, I'm new here. I was diagnosed with 1C clear cell ovarian cancer a few months ago, I'm 30 years old. Don't know any one personally at my age that has/is going through this. Just finished my first round of taxol/carbo 3 days ago and have been experiencing terrible leg and body cramps/spasms. Presently lying in bed hoping for relief. I've been using a heating pad but the pain is all over my body and I just want to sleep. Going to ask the nurses about this tomorrow. Trying to stay tough and get through this, 6 cycles seems so far away right now..
Sending my love to everyone here.. please reach out if you'd like
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mimmi2089
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Be assured you are not alone. I’m an old lady but sadly there’s a lot of younger ladies with this god awful disease.
Leg pain appears to be a common side effect. I had it all the way through carbo taxol, but it lessened after the second treatment because my oncologist reduced the dose. I took codeine & paracetamol as ibuprofen is a no no on chemo.
Hopefully your nurse can advise your doctor so your second treatment can be adjusted.
Hi there Mimmi. I'm so sorry that you are having to go through this at such a young age. Life is so unfair sometimes. The pain you are describing has been a feature for many of us in carbo taxol. I agree with Joy about paracetamol and codeine. The other thing you can try is having a bath with Epsom salts in the water. That really helps. I also had some acupuncture which gave me some relief. When things are difficult for me with chemo, I tend to try and focus on how much the chemo must be hitting the cancer if it's making me feel lousy. Somehow mentally that seems to help.
Sending you lots of love and a big virtual hug. Sian xxxx
Hi, I really feel for you. I had lots of shooting pains on my first course, but now have just had my third and hardly anything. Another three to go, but things are working, so the good does out weigh the bad. Sending love. Jan x.
Hi I had the terrible leg pain you describe after my first chemo and questioned whether I could complete the course if it was going to be so bad. However someone suggested I had a good soak in an Epsom salts bath every evening (I did this on the day of chemo and for five days thereafter) and my Onc prescribed codeine and paracetamol which I took every night before I went to bed and the pain started. This definitely helped and took the edge off the pain enough for me to get some sleep. Speak to your Onc about this and there is no need for you to suffer like this. Hugs Kerry xx
Hello... sorry to hear that you are going through this. Def report to your team.. they can recommend pain meds and possibly lower your next chemo dose. I don’t know if this is helpful but when I was doing chemo each cycle produced different side effects... I had leg pain but only once.... other effects were easier to bear!
Best of luck with it... don’t suffer in silence! xx
Hi, I wads sad to read your post. You are so young to be going through this. Unfortunately leg pain is one of the side effects I experienced too and took cocodamol prescribed by my GP as it's stronger than what you can buy over the counter. It did help so maybe worth asking for that. I know 6 cycles sounds a lot and a long way off but hang on in there and hopefully it will do the trick! We will all be here for you anytime you have a question or just want to vent!. Sending you a big gentle hug. Kathy xx
Yes the pain is quite bad. I had it 2/3 days after each session of chemo and it lasted 3 or so days each time. .Warm baths and .Epsom salts did help as previously mentioned. Massaging with bio oil was helpful and very pleasan.t When I finally finished the course the pains did not return so keep that in mind. Its not a permanent problem but keep positive as its just a side effect of the zapping of the cancer. Lots of love and you are not alone in experiencing this problem. xx
This is terrible, having you suffer this disease at such a young age.
The leg pain (bone pain) side effects can be pretty unbearable, but like the others have said, they usually do fade after three to five days.
However extreme pain or extreme any side effect, like unstoppable nausea, extreme breathlessness, constipation or diarrhoea, or complete loss of appetite, should be reported to your CNS or your Emergency Chemo Phone Lune.
Sometime the dosage of Taxol can be reduce, while remaining effective. Taxol is usually the culprit. But Carboplatin can .cause other side effects.
So, talk to your CNS or the Chemo suite people and let them know.,they want to know.
Great advice above. Just wanted to say welcome but sorry you've had to come to us. You'll find kind, sage advice from a lovely bunch of people here. Xx
So sorry you are going through this at such a young age. You’ve been given some of the best advice from true worriers. I can’t think of anything else to say except stay strong and positive, God has given Doctors the knowledge to take care of this ugly C word. I am 67 years old and had my first experience with chemo when I was 37 and have had 3 more sets of chemo since. I’m only telling you this because they can do so much now to cure C, so one important thing you can do is stay positive and something I’m sure your Mom always said, drink lots of water.
Hi. I've just had my second round. I've learnt that you must keep in touch with your health professionals. Tell them about the pain. They can advise you and hopefully get meds for you. Are you in UK? If so make sure you apply for a medical exemption card from your GP so you don't have to pay for prescriptions. Please don't suffer because you think it's all just to be expected with chemo. Take the pain meds! Good luck xx
Hi there teal sister,im sorry your having to go through all this.at any age...IT SUCKS!!! You have a long journey ahead of you.i did the 6 sessions also.mine was 1x a week. A little less of a whammy! As time goes on my dr warned me that the effects of chemo will worsen...and it did!get to know your body.never feel bad calling nurses or drs at any hr.they are there to help you.
Its legal in alot of places now.i used weed and oils.gave me some relief.pain,anxiaty,and abitity to eat.
Be strong.try your hardest to make it to your chemo appts.they caught yours early,you will have a long life ahead of you.be strong! Rest!take one day at a time...its the best part of the future 💖
Hi my name is Liz I was diagnosed in April 2014 with clear cell stage 3c ovarian cancer. A guess your not drinking enough water . try eating a banana a day for potassium. I had taxol and intraperitenil chemotherapy, IP chemo, ask Dr about that approach. It can add 18 months to 3 yrs , before reoccurance . I have been cancer free 6 yrs come April. Also if your taking an immune booster. Try claritan. But no D. Just plain claritan. Take day after chemo every day for 5 days helps with joint pain. Best wishes, Liz
Same diagnosis for me and i am 39 😢. Last chemo was end of october 2019. I live in Belgium. Stay strong and You can reach out to me anytime! Many young people with clear cell. There is a special group in Facebook for this type of cancer xxx
I had terrible pains in my leg joints on my first round of carbo/taxel, ended up in hospital 2 or 3 times, feeling horrific, but when I had it for the thirď round my oncologist reduced the taxol dose and I hardly had any joint pain at all. Wishing all the very best my dear and you can be assured that we are all for you here. A big hug my dear. Anne XXX
Hi Mimmi , like you I had terrible foot and leg pain with taxol, after the first cycle I phoned the chemo unit and they had me back to see a doctor , he prescribed oramorph ,which helped ,I'd tried everything else, in my case the pain was worse each cycle ,by no 3 I could only walk with sticks ,not what you wanted to hear ,next three cycles I only had carbo ,much better ,my tumour shrunk by more than half ,I then had surgery ,followed by three more carbo/ taxol ,only aching that time .I'm now Ned ( no evidence of disease ) so it was all worth it , the pain and struggle I had with chemo is fading from my memory, so keep going ,ask for help and think positive , not easy when you're in pain I know ,we're all here for you .xx
No one should be going through this and especially at your age.
You sound very strong and determined , so, I know you will get through this. Yes, those horrible body and leg pains. Like someone just injected cold steel through your veins.
I was told to take Claritin. It really worked. Ask your onc team if you can take it. I’ve heard many women get relief from this.
Just rest, drink tons of water if you can, and just look forward to healing and getting strong again. The very best to you. Be good to yourself. God bless you.
Hi I was initially 1c and had the same chemo. I didn't have leg pain too much but felt rotten and severe tooth ache. I did walk the dog every morning. Just a short gentle stroll and that helped. I found movement and trying to avoid staying in bed helped distract me. You must also request relief from the doctor. They will change your doses. I went mad with the steroids and they cut that down.
I’m sorry you’re feeling so rough right now, I have been in the same situation. I was 38 when diagnosed and had Taxol/Carbo too. The first cycle was dreadful, with the same side effects you are experiencing. It wore off after 7/10 days and the second cycle and beyond wasn’t as bad. My theory is my body had a shock from the first cycle and took a big unexpected hit, then ‘got used’ to it. Incidentally the chemo did work for me and I went into NED. Heat pads are great, maybe invest in an electric blanket so that your whole body could get some relief.
Thinking of you, stay strong, you will get some relief x x x
So sorry. Uug. I was 43 when I was diagnosed 2 years ago. I had cramps but didn't get to the extreme yours seem to have. I had cramps more in my long arm muscles and hip area. After the first treatment I doubled up on my Gatorade intake. Well it wasn't exactly Gatorade but a more natural version of the same thing and tried to drink a gallon of water the first day of chemotherapy and 64 to 84 Oz the second day to flush out all the toxins. There's this product called S-caps online and in moderation it helps with the extreme cramping for me that I am going through with this particular therapy. They are just high quality sodium potassium magnesium capsules but they distribute very quickly through your body. Better check with your doctor about your blood pressure though. I'm so sorry. That's all the help I can offer and everybody is different so I don't know that it will be the same for you. But lot of times, reading through everybody suggestions I always found something that offered me at least temporary relief so I like to get as many suggestions as I can when I'm dealing with something unknown.
Hey, so sorry you are in so much pain! I'm a bit older than you (37)--stage 2a endometrioid type--but still considered "too young" for ovarian cancer. Fwiw my onc says being younger can make it easier to fight the disease. It bites, but we'll get through it. 💪💪💪
I was diagnosed in Dec. after an emergency oophorectomy, full TAH etc in early Jan and started my 6 rounds of carbotax yesterday...no side effects so far except from the anti-nausea meds (and steroids being surprisingly helpful for post-surgical pain), but we'll see what the next days bring.
Are you on a 3-week cycle? IDK that it's much comfort when you're hurting but at least what I was told is that side effects should be gone before your next treatment date, and if they're not, tell your doc because they probably need to lower your dose. (I'm sure more experienced folks will have better insights on this tho!)
Suggest that you get magnesium levels checked. Mine were not checked until chemo number 6 after I begged fir the test and was immediately sent for a magnesium infusion. Chemo commonly causes low magnesium levels and this causes horrendous cramps.
The Taxol and Carbo can cause real damage to part of the patients.
discuss your Oncologist possible change in your treatment.
one of them is stopping the Taxol and continue with the Carbo only or
Carbo + Avastin with lower doses of 1/3 or 1/4 every week istead of full
dose every 3 weeks. get weekly follow-up.
if your oncologist dont agreee to change the way of getting your treatment,
ask for second opinion of highier experienced expert.
Dont give up. Taxol is real dangeruos chemo!
wish you all the best !
yudalef
My heart goes out to you. I had that too. It’ll improve as the days go on. Take all the medication you’ve been given and hang in there. Allow yourself to sleep all day every day for the first week after each chemo, if you can. Remember to drink lots of fluids and eat lots. That helps a lot. 🤗
Hi Mimmi, i have also have ovarian cancer and i’m 29, you’re definitely not alone. Unfortunately mine is a different type ( mucinous ovarian cancer1c1 ) so can’t help much with your post im afraid. Hopefully you find a solution quickly for your leg cramps. Wishing you all the best in future. You’ve got this 🙂
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