After a roundabout route and three hospitals I have just been offered Avastin therapy which was a surprise - 18 sessions at three weekly intervals - I would welcome anyone else's experience - side effects and general health during a long period of treatment. Brief resume - diagnosed with small cell OC July 16, 6 sessions gruelling chemo with etoposide and cisplatin, 3 infection episodes involving stays in hospital, last one for 6 weeks with neutropenic sepsis, recovered, asked for second opinion at specialist cancer hospital, re-diadnosed with high grade serous OC, operation now possibility, confirmed and done at third hospital six weeks ago, now recovering well except for extreme fatigue, just seen consultant gynae/oncologist at same third hospital and given options of further treatment including 2 sessions carboplatin/taxol and 18 sessions Avastin. I feel this would not have been offered if not thought beneficial but very daunting to think of a further year of treatment. So far, apart from my misdiagnosis, I have been very impressed by my consultants and nursing treatment on the NHS.
Avastin Therapy: After a roundabout route and... - My Ovacome
Avastin Therapy
Hi. I had 18 sessions, three weekly during a trial 10 years ago. Minimal side effects, i worked fulltime, took a wednesday off every three weeks, then back to work the next day. Had muscle pains in legs and what I can only describe as a bunged up nose, used to go through half a box of tissues a day, also nose bleeds. Apart from that its no oroblem. I wish you well, Kathy xx
Glad to hear you're here to share your avastin success story. I'm on it now, had three so far. Mine began as colon cancer and has moved around peritoneum. Hopeful. -Carole
Hi Jan
I was diagnosed with HGS OC Grade 3 in Dec 2015. Had radical hysterectomy finding cancer all over reproductive organs, liver, kidney, bowel, bladder, diaphragm, appendix. Then had 6 sessions of chemo Carbo/Taxol and Avastin for 18 cycles. I finished Avastin in March this year. Side effects: constant migraines, my shoulders felt as if I had a ton weight, my legs ached, runny nose, my voice changed and sounded hoarse, my gums bled all the time even biting into a banana, they still bleed terribly when brushing my teeth and generally I was very tired. The end result I'm NED with CA125 at 4 (at diagnosis CA125 was 700). I hope this helps and prepares you for treatment. I wish you all the best.. it's worth it as now I feel great! Love Michelle x
I had an excellent quality of life on Avastin - it's not like chemo. Sometimes felt a bit stiff and I had a bit of stinging in the nose (something to do with blood vessels I think, as Avastin affects the vascular system). Otherwise I lived life as normal - did a lot of walking, even went skiing on it and took it to 3000 metres altitude, so there you go. I'd take more if you were allowed more than 18. I took it for a year till Feb 2017 and it held off the cancer till July of this year - now on chemo for recurrence.
Bless you.
Hi there, I would definitely take up the Avastin offer. I finished my chemo last August and started Avastin in November. It has really helpful me and though I do have some side affects, they're manageable and nothing like as bad as chemo.
I'd give it a go and see you how feel on it. My problems more recently have been how I feel emotionally. The continuing and seemingly endless treatment really got to me. But knowing Avastin is helping so much is a great motivator.
Hugs, T. X
Thank you all for replying so promptly. Your views have been very encouraging. It has surprised me how well I have coped emotionally (with the help of brilliant family and friends) but like Rosewall sometimes things do get to you. Personally I have found dealing with events one at a time and on a need to know basis helps and not to look too far ahead. Ie cope with the chemo - that is quite sufficient in itself - then think about the next phase. I am however realistic and knowledgeable due to my professional background. I think that having a good experience with consultants helps enormously and my Macmillan nurses are brilliant.
That's the way to do it - just concentrate on the 'moment' where you are. If you want a different take on supporting yourself try Penny Brohn UK's course 'Living with the Impact of Cancer' - they are based in Bristol and details of courses are on their website. The courses are about how to support yourself with diet, exercises, mindfulness etc and how to deal with other people and their expectations.
Hi Jan, good luck I hope it keeps you in good health. Take care Cindyxx
Good Luck with your next lot of treatment, (Jan?) I had six sessions of Carbo and Gemcitabine with Avastin, continued with the Avastin for another eleven Sessions. I coped pretty well with the side affects. I did get very tired and needed a couple of blood transfusions but I was so grateful to be able to have the Avastin as many people couldn't have it. I did get ache-y and had nose bleeds and scabs in my nostrils plus a hoarse voice but I had a remission of over two years, for which I was very happy. Am back on Chemo again at the moment - Carbo and Caelyx. I wouldn't hesitate to have Avastin again if I could. Hope this helps you feel better about it.
Best wishes, Solange 😊
I am on cycle 11 of the 18. I have had trouble with joint pain and the runny nose thing . Overall I feel pretty good and everyone tells me I look well
I found Avastin much less debilitating than chemo. I have my last treatment in three weeks, and so far it seems to have done the trick, though with this illness you never say never!
I have had a runny nose, often blood streaked and a couple of nose bleeds. Also quite a lot of joint pain, although i have now found a gel that is helping with that. There have been a few minor considerations like not being able to have dental treatment, and i am often very tired, falling asleep if i sit too long in my chair in the afternoon!
Generally speaking, i have felt well and been able to get on with my life. I wish you well and hope that you find as I did that the Avastin year passes without you really noticing.
Jenny
I had the 18 rounds of avastin and most of the side effects are manageable. I did get tired and had pains in my feet plus the hoarse voice and odd nosebleed but still managed to work part time and enjoy some fantastic holidays so give it a go, it's really do-able and will hopefully keep you in remission! All the best , love and hugs
Jane x
Hi I have also found Avastin easier to adjust to. I am half way through and my CA125 is 13 down from over 1000 at the start of diagnosis of OC. I am suffering with joint pain and find it difficult to walk about first thing in the morning. Swollen ankles and feet by end of day. I used to have nose bleeds but now get bleeding gums when cleaning teeth. All side effects are bearable and have been able to go back to work part time. My next hurdle is to exercise more as I need to lose about 2 stone!!. Wish you well
Angie
I would have the avastin, it worked well for me. I was upset when it ended, gave me 16 months remission . Good luck with whatever choice you make. Xx
Hi Jan. Avastin's been a God-send for me. I've lost count of how many infusions - perhaps 45. My arrangement is that I can stay on it as long as it's working. As you see, it's been working brilliantly to date. My first remission (no avastin) was 18 months. When the OC returned I was offered the avastin trial. So I had the usual amount of chemo - Carbo/Caelyx - along with avastin. When the chemo ended, I remained on the avastin 3-weekly. It's not a chemo drug & it doesn't 'wipe you out'. I sometimes feel a bit tired on the day I have the infusion but that may be simply because I had to get up early to go to the hospital. I have a port for the infusion & life is good. The only side effects I get are a runny nose (most of the time) & it's raised my blood pressure. I never had high BP previously. To stay on the trial, my BP has to be below 140, so I have to take pills to keep it down. It's now 5 years, 8 months since my initial diagnosis (3C) & 2 years 4 months in this 2nd remission. I have scans every 3 months. If you need any dental extractions, get them done ASAP. I believe that fillings are OK. God luck. Best wishes. Pauline.
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