almost to the finish line I hope: I was newly... - My Ovacome

My Ovacome

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almost to the finish line I hope

tntknc profile image
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I was newly diagnosed in January 2013 with stage IIIC. I have been receiving Taxol/Carbo and my last treatment will be June 4th. I am seriously looking into going on Avastin for a maintenance because I like the idea of taking away the blood supply to the cancer cells so they can not create any new blood vessels for making new tumors. It sounds good when I think of it in these terms and makes me feel like I am taking back some power of my own body but I would love to hear from others that have tried this, what was their outcome? Any feedback would be most welcomed.

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tntknc
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12 Replies

Just sending my best wishes love x G x

wendydee profile image
wendydee

The are quite a few friends on here who are having Avastin. I think your oncologist has to apply for Avastin as it hasn't been approved by NICE but is available to individuals by application. Look on the Ovacome website for info. It's ovacome.org.uk. I'm sorry, I cannot help with any personal experience, but I'm sure someone will be able to. Just wanted to say all the best and hope the treatment goes really well. I like your idea of visualising the tumour being starved of blood cells. It's a good image.

Love Wendy xx

Sunfleury-UK profile image
Sunfleury-UK

I hope you have something lovely planned for yourself when you finish treatment in June- its not long now! Best wishes Sxx

HerThing profile image
HerThing

As suggested above, Avastin is only available under certain circumstances. Whippet put up a recent post detailing the criteria which I am sure you could find with a little searching. My wife Angie was eligible as her surgery after 3 first line infusions of carboplatin left residual disease in excess of 1cm. (Diagnosed in December at same stage as you).While she opted not to use it others obviously do. For us the risks outweighed the benefits. Best wishes for a good outcome after your chemo and a long period of remission. Andy x

tntknc profile image
tntknc

Thank you for all of your responses. This is such a hard place to be in life and it is so awesome to have others to talk to and bounce things off of that are in the same place. What a lovely group of people to be involved with!

Whippit profile image
Whippit

It's good you're getting to the end of your treatment and I hope it leads to a really positive outcome.

I posted up a blog, Avastin - 'Bevacizumab NICE Approved Criteria', which lists the criteria for its approval. There are also postcode issues. If you live in Scotland it's not available, if you are treated by certain NHS Trusts in Wales you will not receive it.

If you find you are eligible it's worth discussing with your oncologist whether they would recommend it for you. It is associated with some worrying side-effects and your consultant would be best placed to advise if it's something you would benefit from and whether your NHS is likely to be successful if an application is made.

Let us know how you get on. x with love Annie

Alice23 profile image
Alice23

Tntknc - I read your news this morning and discussed it with my son and his words were, "what an inspiration of a woman! Her strength helps your fight"...so well done truly wonderful and remarkable. I was diagnosed IIIC in early/mid April and am just at the end of round 1 of 3 cycles of Taxol/Carbo before debulk in the middle. Hats off and all love

tntknc profile image
tntknc

Thank you for the kind words. I had my total hysterectomy/debulking before starting chemo, it all happened so quickly. Its a tough thing to get used to this "new" way of life and sometimes I feel like I am not so strong but like others have said there are good days and bad days and the further away from the beginning of this monster starting up in my life the more good days I have. I find it gets difficult for about a week to week and a half after having had treatment and the nuelasta shot but I am relieved to see the end of this round coming to an end on June 6th!

With hugs to all! :) Tracy

Hi tntknc ... I am so pleased you are coming to the end of this - it'll take you your usual time to recover from the last chemo, but the idea of side effects being felt for the last time is exhilarating!

Is there a reason you are thinking of a maintenance regime - because if you haven't yet had your final scan and CA125 you don't know what the state of play is yet! I was diagnosed 3c in July last year and am NED still, after my first 3 month checkup (yay). Under those circs, which I hope you share, I don't think any more drugs are actually necessary or prescribable. Hence the discussions here about complementary maintenance therapies ranging from iscador to ibuprofen... Of course if you have been led to believe you won't be at that point, then I apologise - no way to tell from your previous posts!

Love

Sue xxx

tntknc profile image
tntknc

At my last treatment which was almost 2 weeks ago my ca125 was a 12 but I have not had a scan. I guess the reason for considering the maintenance for me is I would feel like I was doing something proactive to keep the cancer cells down, not give them a chance to recur since the rate is so high which is what my onc told me in the beginning. Everything is so new to me and just trying to keep sane. I am planning on changing my eating habits to more whole/natural foods as I believe that will be a positive. I just want to hold the cancer off as long as possible and I am afraid of doing nothing but waiting and seeing what will happen next. Many decisions to make and discuss with my husband. Thank you for telling me about you Sue and I am thrilled to hear your great news! I still have some time before I have to make a decision so I am open to reading everyone's thought, experiences, knowledge, etc.

Hugs, Tracy

Thanks Tracy! So: as I thought. Do you know I would really stop stressing about anything other than getting to the end, right now.

I do understand this imperative to keep DOING something though - and I could get you started on the eating thing: I recommend a great book by Dr Servan-Schreiber which you can find in amazon/iBooks called "Anti-cancer: a new way of life". If you are looking for healthy proactivity re eating and lifestyle, that in my view is about as good as it gets (I read a lot!) I feel great right now, and I put that down to truly healthy eating for the first time ever. The medical community see no provable, demonstrable link between eating and keeping cancer at bay - how could they? No drug company would fund a large scale empirical trial on that, there is zero incentive. But there is massive social statistical proof about things like green tea and turmeric/spices, from national cancer rates and recovery records in parts of the world even where the healthcare is substandard - plus there are helpful indicators from small scale scientific trials. So it isn't overall scientifically proven - but it is a hugely powerful way of viewing the role of food in maintaining an environment which at least does not cause, encourage or foster cancer. It is also practical and doesn't take the joy out of food like Budwig etc - but some principles are shared. i did myself a couple of handy mindmap posters to have up in the kitchen as reminders. I have also followed the advice to clean up my external environment too - ditching chemicals, learning how to make less damaging (and polluting) home and office cleaning stuff. Again, did my research, happy to pass on!

You might want to look at some of the posts on here by drdu about ibuprofen... It's promising and though provoking, re maintenance.

Best of luck with it all, here for chats whenever on all this type of stuff!

Love

Sue xxx

tntknc profile image
tntknc

Thank you so much for all the above information! I will definitely be looking into those things. In your writings, you have a very strong sound which leads me to believe that you feeling better now than you have in a very long time and that is my goal with some serious lifestyle changes! You are an inspiration to me which gets me excited about coming to the end of this treatment time. Some days when I think about not going back in for three months after being seen every 2 to 3 weeks is quit daunting. It just would be nice to do something proactive to my body, for my body to keep the monster away for a good long time!

Hugs, Tracy

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