Hi I’m comming up to my last chemo for ovarian cancer stage 4 keep hearing about mantanance drugs what are these do they have side affects are they tablets or injected I’m so scared I will just be left after chemo as they said I could xx only have 6 every 3 weeks and I only had carboplatin don’t think Iv spelt that right but keep seeing people have had 2 sometimes 3 lots together please if someone could plz help me understand this more
Thanks so much xx
Hi there,I wanted to let you know if you were having treatment once every 3weeks.thats a heavy dose they were giving you.most important is ...are there any cancer cells left after all treatments are done. I hope 🙏 all will be ok for you for awhile to come
HiYou've done really well getting this far and I guess you will be pleased to be finished with the chemo after this last dose.
I don't know why you have been given a single drug or if you will be offered maintenance but think you should talk to your team. I imagine you will be given an opportunity to speak to your consultant soon after the last chemo. In the meantime you could contact the nurse specialist for information and tell her about your worries.
I really hope the chemo has been successful for you.
All the very best.
Liz xxx
I was diagnosed stage 3 in 2018, had 5 rounds of Carbo should also had Taxol but had bad reaction, so that one was dropped. Tested clear after treatment but unfortunately had a recurrence in 2020. At the moment half way through more chemo, this time Carbo/Caelyx which I have tolerated. If everything goes according to plan Oncologist hopefully will put me on a maintenance drug called Niraparib, obviously none of this helps you at the moment but perhaps gives you encouragement that there are always alternatives.xx
Was diagnosed with stage 4 ovarian cancer four years ago. Had chemo of carbonatin and taxol for several months, then in 2018 had radical hysterectomy..
Then Avastatin until September 2019.
In remission for eight months. Wonderful.
Then blood tests showed markers rising.
Had another operation, but during the operation, the surgeon found that my colon had stuck to the scar tissue, and had to fit me with a temporary stoma.
However, he managed to remove all cancer.
After a few months the stoma was reversed, and I have been on niraparib for nearly three months. Might be causing constipation, but that has always been fairly normal for me. Otherwise, all well.
I take one capsule a day. Weigh 62 kilos. ( live in France)
Hope all goes well with you., Ann.
Thank you, I see you and I weigh the same😁 also I also suffer from constipation which I will keep an eye on if I go on Niraparib. Wishing you well in your journey. Ginny (U.K.)
Hi, try to relax. It’s a long journey. You’ll get through it. First , I had 7 Chemo treatments for Stage 3. ( Taxol and Carboplatin). 4 treatments first, then major surgery ( total hysterectomy plus some of my sigmoid taken out) .After I recovered from the surgery, I had 3 more treatments. Was put on maintenance drug called Zejula , 2 capsules at night. Be aware , it goes by your weight. I found this out myself. Under 170 lbs. 2 capsules a day. Over 170 lbs , 3 pills a day. It makes a huge difference on how you tolerate the meds.
Zejula works more effectively if you’re Braca positive. I was not. I really didn’t have too much problems with the meds but they really affected my blood counts.
Dr just took me off Zejula the other day because of my blood numbers going down. Having my Port flushed today and bloodwork repeated.
Good news, Cat Scan last week didn’t show any cancer.
Hang in there my friend. You’ll get through this. I’m here for you anytime you want to talk. ❤️
Every treatment is specific for each case. I am also curious why they only used one drug. I had carbo, taxol, and avastin. It was the avastin that really helped with my CA125. It is crucial that you do communicate with your Gyne-Onc and ask questions. My doc did not want me on a maintenance drug. So far I’m 4 years out. Advocate for yourself and the women and professionals on this site are always here for you. Please keep us posted as to any next steps.
I finished chemo in September, 2019. I was put on Lynparza, a parb inhibitor in October 2019. I was originally put on 300 mg twice a day but it was lowered to 200 twice a day to make it easier for me to tolerate. I'm BRCA1 + which makes parb inhibitors more affective. Both my surgeon and oncologist have recently told me the statistics on parb inhibitors as a first line of defense after treatment have been excellent. I will be going off soon as I will have finished two years of maintenance. Side affects have been minimal: thinning hair, some nausea easily controlled with zofron, some joint and mussel pain. The drug is in pill form. I was stage 3b and so far blood work and scans are good. I go monthly for blood work so any changes can be quickly addressed. Everyone's plan is different according to their own doctor and diagnosis. Hopefully your doctor knows what's best for you individual treatment.
I was scared to death to take Zejula, a parp inhibitor, after reading about all the nasty side effects. After several months, my doctor suggested that I really get on it, it may give extra time before recurrence. None of this made sense to me since I wondered how would they know if Zejula kept away cancer recurrence longer than it returning on its own by not taking the drug, if I had not had a recurrence as of yet?? So, I started it, over a year ago. All my fear about side effects were uncalled for because I have had none. I take two pills, 200mg daily. I still wonder how they would ever know that this drug is what is keeping cancer away all this time since they have no past record of recurrence to compare it with. We are so scared when we are first diagnosed, and we do what the doctors say.... they should know best.(?) I had a complete hysterectomy, chemo before and after surgery and was told they got all the cancer. Chemo zaps microscopic cells but they can hide??? This is what I was told. Where do they hide so that chemo cant get to them? I wonder about that too. Just take it one day at a time, I guess. Chemo was easy on me... no problems with that until the last infusion....had an allergic reaction. Hands turned red and itched like mad, felt my heart beat weird...I called for a nurse. They instantly stopped the infusion, added Benadryl and infused that into my system.After a half hour, my last chemo was completed. I have no idea why one chemo out of 6 , suddenly affected me. Sometimes we allow ourselves to get so scared and we drive ourselves crazy with worry and then things go fairly well. The only time I start getting anxious and nervous is when it is time for my labs, my blood work and Ca-125 number. That always has me scared and I am so afraid to even look at the results. So far, so good. I can only hope my numbers stay low and I continue on the path. Good luck to you and hopefully, everything goes great for you.
There are several drugs post chemo. They are called PARP inhibitors and they are a oral daily pill. Avastin is another drug and it is an infusion. Ask your doctor was is right for you. Stay strong and positive. Every day if life is a gift.
Hello,I had carboplatin along with taxol. 4 Chemo, major debulking , then 3 more Chemos.
I’m now on Zejula for maintenance. I’m lucky that I don’t have too many side effects. Fatigue, bone and muscle ache andconstipation. Zejula given in pill form.
The dosage on Zejula depends on your weight. I’m the one who brought this up to my Oncologist. The lower the dosage, less side effects. Good luck. 😄❣️
Hi. I don't want to discourage you about maintenance drugs side effects, but I wish I had known going into it.... I was on Avastin for a year after the 6x3 treatments. There are very annoying side effects, and if that is the drug you will be on, and you want details, let me know. Best of luck to you and all of us!!!
Hi what was your side effects from Avastin
Ahhh, I don't want to scare you off! Please remember, that we each get different side effects which affect us all to varying degrees. Mine have been: joint, hip and muscle pain, nausea, periodic, whole body pain. Lots of fatigue, in clusters of days. Sometimes the fatigue has been such that I get out of bed and turn around and go right back to bed, and I have 1-2 more days of that. That usually happens about once a month (I have been finished my Avastin since February '21. I just think it's good to be aware of what might be, as the docs don't seem to tell us. Hopefully yours will be easy, as not everyone complains of these things.Best of luck and good wishes to you!
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