Hi everyone. I have primary peritoneal cancer high grade serous... Grade 4. I am a young and fit 55 year old.
I am post debulking surgery and Dr has now said 2 rounds of Avastin and carboplatin ( had a bad reaction to paclitaxel on first lot of chemo) then a maintenence IV of Avastin for 12 months. Also I have asked for a PICC this time as my poor veins can't take any more prodding and poking.
Can anyone give any insight into what might lay ahead Please?
I am a NHS nurse of 30 years but its different when you're at the sharp end.
Thank you and hugs to all of you.
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pants22
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Hi. I trialled Avastin back in 2007/08 under the same regime you are being offered. Basically I had avastin along side carbo/taxol for 6 no cycles then avastin alone for a further 12 cycles (every three weeks). I worked full time whilst on the Avastin alone. I used to take every third Wednesday off of work, have the infusion then be back in work the next day. The side effects I experienced was aching joints and what I can only describe as a 'snotty nose'. Each morning I would go through approx half a box of tissues just to clean the mucus from my nose. Usually this was accompanied by blood which I put down to the nose blowing. Once clear I was usually fine for the rest of the day. I did also have a rise in blood pressure which was treated with BP meds which I stopped using a couple of months after completing the Avastin. The side effects of aches subsided about 3 months after completing Avastin and the 'snotty nose' about 4-6 months. I achieved a remission of nearly 4.5 years. I hope all goes well for you. Big Hug. Kathy xx
Hi Linda. I had a cannular fitted each time. I resisted having a PICC line fitted right up until my second recurrence in 2013 and in hindsight that was a big mistake. Basically it was fear of the unknown that led to my resistance but once I had one fitted after I ran out of veins everything was so much easier. You are totally right to be asking for a PICC to be fitted. There is the issue of making sure that the line stays dry when bathing or showering and swimming is a no-no plus you have to have it flushed weekly but trust me that nothing compared to the way it makes life sooooo much easier, no more prodding etc to try to find a willing vein! If I do have to have treatment again then the first thing I will ask for is a PICC. xx Kathy xx
Hi, I had a port placed in my chest for my chemotherapy. They run that medicine through that , so my veins wouldn’t be affected. I have it flushed every 3 months now, because I am taking Zejula capsules every day. I started the Zejula on July 3, but I do have some side effects also. I have blood work and a pelvic exam every month. Just waiting to see how it all goes.
I have ovarian cancer stage IV. I also had major surgery in between my 7 cycles of chemotherapy.
I would definitely recommend a PICC line, I had one inserted after 2 types of chemo and wished I had it put in from the beginning. It can also be used for CTscan contrast and blood tests which you are sure to have lots of. Good Luck x
Hi Pants22! I am primary peritoneal OC, stage 4 and 53 years old. I was diagnosed a little over a year ago. This is my 3rd line of chemo (I am platinum resistant) and started on taxol and avastin almost 5 weeks ago. Other than being super tired a couple days, along with some minor mouth sores and a little rash on the palm of my hands, I’m doing okay. I go in weekly for taxol and every other week for taxol and avastin. I tend to go in 1 to 2 times a week for a bag of fluids too. I do hope the taxol and avastin work for both of us!! My first line of defense was carbo/taxol and a trial drug (can’t remember name (Chemo brain) but I’m sure it was a placebo anyway). I was on that for 6 months and then saw spreading. My second line was Doxil for 7 months and then saw more spreading. The Doxil hit me hard with side effects - mostly mouth sores which left me unable to eat, drink and even painful to breath. So now I’m on avastin and taxol. When I was diagnosed my gyn/onc strongly recommended a port and it was the best thing I ever did! Never have to worry about finding a vein, time after time, especially when you’re dehydrated. I wish you all the best in the world. If you have any other questions re Taxol/avastin, please don’t hesitate to ask! xoxo
Hi, after I had my op in feb last year I started carbo/taxol & avastin but unfortunately I had a rare complication after the first infusion & needed more surgery. My oncologist decided as Avastin is not great for healing that I would continue with the carbo/taxol infusions & not have the Avastin . I only started back on avastin on my second last chemo & now I have had 22 infusions. I can get a little stiff at times ( maybe that's really a sign I am getting older 😜 , a little tired, my voice a little hoarse, no high blood pressure which can often be one of the side effects of Avastin but none of these stop me from doing everything I did prior to my diagnosis so I can say I would happily stay on it forever if it keeps the cancer away. Hopefully it works as well for you too . As for you getting a PICC line I can't help you as I have a port in my chest. I have never had any problems with it & even forget sometimes that I have it. My bloods can be taken from it just before I get my Avastin so no waiting around 😊 Good luck with the rest of your infusions & stay well X🌸
Hi , I am on Avastin having finished carbo/ paclitel in April. I am a similar age to you - just turned 54 . Avastin ( touchwood) has been ok. I get a bit tired and am achy ( waiting for a bone density scan). My CA125 is low but has risen 3 points across last 3 blood tests which makes me anxious , but otherwise life is good( again touchwood). I work 3 days in a demanding job ( from home), do yoga and Pilates and can walk a long way. O try to be kind I myself. Wishing you the very best, Sara xxx
Oh also my veins are crashing like crazy and I now wish I had a picc line. It can be stressful bring cannulated because of yhis. I'm not sure if this is accurate but I did read on this site once you start Avastin you can't get the picc line because of risk of bleeding so if that's your plan check and get done asap. Good luck xxx
Hi. This combo worked for me, and gave me three years remission. Avastin is very bearable. I had a runny slightly bloody nose and aching joints that did get me down at times. Also, my blood pressure increased, but BP meds controlled this.
I would happily take Avastin again if it was available to me.
Hi. I am on Avastin and chemo. Had a break from the Avastin due to a rise in my BP - think the chemo - and then because I was waiting for my op so have so far had 5 chemo and 3 Avastin. The second caused a bit of a nosebleed which I was told wasn't anything to worry about. No other nasal problems! Still have 15 cycles to go. Good luck.
Hi pants22, I was diagnosed with PPC in May 2019. I had 3 cycles of neoadjuvant chemotherapy prior to surgery.and then a further 3 cycles of chemotherapy, during which they started the Avastin infusions for maintenance therapy.
I have just had the 17th infusion of Avastin (out of the 18 cycles which are allowed by the Cancer Drugs Fund, England). I've had no real problems with Avastin so far. I have some minor side-effects such as runny nose, sneezing and aching joints (fingers, toes, elbows, wrists, hips - but not all at the same time). Sometimes I feel a bit tired especially when walking or working in the kitchen. All of these symptoms come and go and there is no real pattern within a cycle. Of course some of these may be partly post chemotherapy effects.
My hair is growing back, it's quite thick and curly but I feel like it's growing quite slowly.
Once I got used to the Avastin I started on a phased return to work, working from home.
I go for the Avastin infusion every 3 weeks. After the first couple of times it should only be a 30 minute infusion. I have my blood chemistry checked a day or two before and they also monitor my blood pressure and dip a urine sample to check for proteinuria.
I hope this helps but if you have any other questions just let me know.
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