HiMy first time on here so hello everyone and looking forward to some support.
Just been diagnosed with stage 1c2 ovarian cancer. Full laparotomy removing all ladies bits and omentum.
No cancer cells found in my omentum or ascites...all contained in tumour 14cm by 15cm but I have aggressive cancer clear cell carcinoma.
Just had my first chemo of paclitaxel and carboplatin and wiped me out.
Feeling very scared and isolated at the moment so any help or positive support would be so appreciated
Hello there, I dont have you type of cancer, but what I can say is be kind to yourself,rest when you have to, try and walk a little each day if you can,even if a very short walk. Keep your fluid level up and try to eat as well as you can. When I had chemo I try to drink at least 1.5 litres of water throughout the session and I found that this helps,so that you keep hydrated.I hope that you feel a little better soon. Take care.x
There will be somebody on here that has the same type of cancer as you ,that will respond.
HiThank you for your reply and lovely advice.
I'm drinking lots of water but my legs are my worse. Terrible aches and tremors. Sleeping is awful.
I'm gonna make sure I go out tomorrow even if it's just a small stroll.
Thank you again
If your legs are like that, you mention it,to your Oncologist,or Macmillan nurse,because that could reduce the dose slightly. My legs were affected by the pacletaxol the very first time it felt like someone was stabbing me. The dose was reduced and I was much better the next time around. Everyone is affected a bit differently. Enjoy your stroll tomorrow. Sending hugs.x
Thank you again, I have logged all my side effects so will defo mention these at my next infusion x
Thank you again, I have logged all my side effects so will defo mention these at my next infusion x
Hello Bunnyj
There is no need to feel isolated or scared on this forum. The ladies on here are brilliant, we reach out to each other.
I was diagnosed with Stage 2b High Grade Carcinoma last July and had full debulking on 20 June last year. I completed 6 sessions of taxel and platin, my last session was on 20 November.
Love and hugs.
Beth xx
Thank you BethMeeting ladies at my first chemo really helped me. Been so isolated since diagnosis. My family are amazing but still not told some of my distant friends of my diagnosis. I had full debulking 23th Jan and my first chemo 2nd march. The recurrence is whst scares me
I totally understand your fear of it recurring. I am the same.
Love and hugs xx.
Hi Bunnyj
I’m hoping that I can give you a bit of hope.
I was diagnosed in October 2017 Stage 4b. I had debulking surgery followed by Carbo Taxol followed by Avastin. ( I lived in France and was treated there). Ava Aston ended in January 2019 at my request as I’d had enough.
Now back in the UK I am still cancer free no recurrence so far.
I have been very lucky and I try hard not to dwell on what might be, rather to focus on the here and now.
Leg pain was awful at first and my oncologist reduced the dose and to be honest I coped reasonably well.
Try and stay positive and only tell people when it’s right for you.
Good luck.
Joy
Hi Joy, so good to hear all the positive outcomes regarding recurrence. Hearing positive remarks Is so what I need as I suffer from terrible anxiety. I'm back for my 2nd session 23rd March so will mention the leg aches, to be honest its the only side effect that is effecting me the most.
My family are brilliant but my partner is so tired as I'm keeping him awake at night. I almost feel guilty that I'm putting him through this as his working full time and looking after me and all the house work...dinners. etc
Hi Bunny: For the leg pain, I'm assuming they gave you some kind of pain meds to take. Don't try to be a hero and tough it out - try to consistently take the meds ahead of the pain getting a hold on you. That will make things easier. If the pain meds give you side effects (like constipation), then add a gentle laxative that will keep things moving, along with lots of water. Wishing you all the best! Deb in Colorado
Hi, thank you for your reply I'm taking ibuprofen and paracetamol now to help with pain and some piriton as I've got itching also.
Actually feel a bit bettervthus morning just the damn leg shakes and aches x
I don't know if you have restrictions on what drugs you can take, but during my active chemo treatment I took hydrocodone (very serious stuff!) for the 4-5 days after infusion to deal with the leg pain. They told me to use the heavy-duty meds to keep ahead of the pain but only take it for those few days, then wait till the next infusion. Maybe this is a UK-US difference in treatment, but it might be worth asking. Deb in Colorado
Thank youI've spoke to my community nurse and shes already sorting things for me when I go for my 2nd session
Hugs and love to you x
Hello, I don’t have the same type of cancer as you but I definitely get the feelings you’re having and the nerve pain. I had the same chemo and my legs and feet drove me nuts on the first one. I mentioned it to my oncologist and she lowered the dose slightly on the next one and it definitely improved. The other thing that helped was a hot water bottle and then an iced towel (got mine from Amazon) A friend also let me borrow her foot spa and that did provide a bit of relief too. For me there wasn’t any pain medication that made a difference but it did tend to be at its worst for about a week and then it went off. Sleep when you can in the day to make up for the night and sometimes I just got up and watched tv or read in the night because otherwise it got too stressful lying in bed and not sleeping. Take care, be kind to yourself and you will get through day by day xx
HiThank you for your reply. I think sleeping when I'm tired is the best advice as I get anxious when I go to bed worrying about if I'm gonna sleep which makes me worse. My body clock Is all over the place and anxiety is going up and down. Better sleep last night but still restless from the laparotomy. I'm gonna try the water bottle tonight.
Thank you
Hi Bunnyj, welcome to a club no one wants to join. However, now you’re here don’t ever be afraid to ask for advice or have a moan. We’ll be here and we’ll understand. Congratulations, you’ve survived the first chemo, none of the rest will be as bad. You didn’t know what to expect and now you do. It’s no walk in the park but logging your side effects is a great idea, you can look back and kind of have an idea of what to expect. I know it’s easy to say, but try not to think of recurrence at the moment, focus on each day. It will get easier. Good luck and hugs. 🤗 Gill X
HiThank you for your message, I do actually feel better this morning but the leg aches are so bad. I've got to stop focusing on the ifs and buts and focus on today. Thank you Gill really do appreciate your support.
I had stage Ic ovarian cancer (mixed clear cell and endometrioid) plus endometrial (womb) cancer stage Ia. I had 6 cycles of carboplatin alone (not allowed taxol because I have a bad allergy history. Completed treatment in November 2006 and have never had a recurrence. 16 years plus!
Hi, so good to hear that you have had no recurrence. Amazing! Thank you for your message.
Hi, my diagnosis was also clear cell stage 1c2, (20cm) full hysterectomy December 2021, followed by 6 paclitaxol and carboplatin. I found having a bath in Epsom salts then spraying Magnesium Sleep (Holland & Barrett) on my legs before bed helped a little, also an electric blanket! Chemo is tough but doable, drink plenty of water as constipation can be a problem and for me this was a side effect! I found my worse days were 3-4 days after chemo but would usually feel okay after that so definitely rest up on the days that you feel you need to.
This is such an individual thing that we all handle differently. I can't offer much advice but can tell you there are a lot of us out here that have survived this disease and after quite a few years still around to tell the tale. I believe a positive way of thinking really helps and carry on as much as possible as normally as you can. Talk to people, professional and on here and we'll do our best to see you through it. All the very best. Zena x
I was where you are in 2008. Carbo/Taxol very fatiguing. Loss of hair unpleasant. But it worked! I was cancer free for 6 years. Please keep up your checkups. Praying the treatment works for you. I kept telling myself, “it’s time limited”, and it was. Be kind to yourself and your body (warm massage?).
Thank you.Gotta be more positive and defo kind to myself. Xx
HiI had 6 rounds of carboplatin/ paclitaxel. My pain came from my lumbar spine down my legs. I have stage 4 high grade serous carcinoma. I think the best painkiller was Lyrica. 25 mg am and 75 mg pm started 3 dd before chemo. Also, watch out for immune suppression causing shingles as a source of nerve pain in legs. I got a small rash on my left lower back after first chemo. Shingles caused inflamed lumbar spine nerve roots. Agony. Oncologist didn't notice but my GP did. Same happens with genital herpes that you may not know you have because your body was dealing with it before. Acyclovir or similar cures shingles(herpes zoster) and genital herpes and could stop the pain.
Hi Bunnyj. You've already survived so much, so it's obvious that you are a strong, courageous and amazing woman. You are now in the company of the many other strong, courageous and amazing women on here so definitely not isolated. Please don't feel that fearing reoccurrence of this effing horrible disease makes you less strong. We don't hide our heads in the sand. We all know it's a possibility but for me, I look that fear in the eye & tell it that I don't have time for it. I'm busy with my treatment and busy living the best life I can for as long as I can.As everyone else has said here, talk to your oncology team to try to make side effects as manageable as possible. It WON'T last forever and you WILL get through it.
I told my husband to sleep in a different bed when I was at my worst. It took the pressure off me & he had a better sleep so he could cope with all the extra "stuff" he had to do. I also took sleeping tablets for anxiety for 2 weeks after chemo. It helped me cope. This whole experience (8 years, 2 reoccurrences & now on Avastin) has made our relationship much stronger.
We are all here on this journey with you & always sending love and hugs. xxxxxx
Hi Aunty Orange, thank you so much for your lovely and kind words...everyone on here has been amazing and I'm so glad I signed up.Today its constipation, rang my community nurse and she has popped so meds to me. My team so far have been amazing.
I may ask for some sleeping tablets to get through the next lot of chemo so thank you.
Sending you lots of love and hugs and again thank you for your support
Xx
Hi - some ladies on here have mentioned constipation as being a side effect of the chemo. In my case it was the anti-sickness pill I was given (Ondansetron?). Once I had worked that out and stopped taking it (I never felt sick anyway but was doing as I was told!), I was fine for the next 5 cycles. Then I had to have more treatment 18 months later, they gave me Ondansetron and the same thing happened. It just took one tablet with me to cause the constipation. I am now on niraparib which has the same effect but the prunes sort it out. Good luck.
HiThank you, I will take a look to see what anti sickness pill I was given. I can honestly say I have never experienced constipation like it! Ended up back in hospital....was impacted.
X
Omentum and surgery
After surgery
Side effects of niraparib
Coping with side effects.
Scared and not sure what to do
