What happens when avastin finishes?

[Mad_Mags]

Hi ladies, after finishing carboplatin and paclitaxel I am now on no 14 of 18 avastin. I have just had a scan and have new small growths in my liver and lungs. However a previous growth in my abdomen continues to shrink. I am a little worried that when my avastin has finished that the cancer will come back with avengance. Has anyone been in a similar situation? What happens after the avastin has stopped? I keep asking the oncologist but she says let's wait and see..,......

[Lyndy]

Hello...this is a tricky one with no definitive answers! I had lung nodules during Avastin but they did nothing and it was felt that they had probably been there over a long period of time without any ill effects. Then about 10 months after Avastin my ca125 began to climb and a scan showed 3 lymph nodes bigger than they should have been. But that was in January and I’m still symptom free and not yet on treatment.

I know this is hard but your Onc is right....don’t spend time worrying, go out and live your life...whatever happens next no one can predict xx

[Seasun36-uk in reply to Lyndy]

Hi Lyndy. This links up with the previous post about CA125 testing (& my reply). So if I understand correctly, with you, there are tiny amounts of cancer....but - until you have symptoms, no chemotherapy is needed? Is that correct? How does your Oncologist explain it all to you? Hope you don’t mind me asking...

Linda 🌷🌷

[27-359 in reply to Seasun36-uk]

Hi Linda. The way it was explained to me is that hitting the cancer hard when it is only a small amount is not the way to go, as the chemotherapy will harm your body and your life more than leaving for a while. The body can only take so much toxic treatment so it is better to leave treatment as !omg as possible before blasting the little bu##ers! The longer the time between treatments, the more the body will be able to cope.

Jenny

[Seasun36-uk in reply to 27-359]

Thanks Jenny.

I was thinking of ladies with stage 1 or 2 where they receive ‘heavy’ chemo too....but I guess that is because it needs to be eradicated before it spreads and the body can ‘tolerate’ first chemo better...

Linda x 🌻🌸🌼

[coksd in reply to 27-359]

Ya i think that was what the onc was saying to me treating it earlier doesn't change the outcome and there is only so much the body can take, my biggest fear are the plural effusions coming back as before diagnosis I had the swollen tummy, shoulder pain rib pain and then the point of no return the plural effusion - the only way to treat it was draining it then chemotherapy. Such a scary disease to deal with. Clare xx

[19Mary in reply to 27-359]

There was a report in The Lancet saying something to the effect that long term its best to leave as long as possible before restarting chemo or other treatment. Sorry I can't find the reference.

[Mad_Mags in reply to Lyndy]

Hi Lyndy, thanks for your reply. I am living my life and at the moment am healthy and well apart from the obvious. My concerns stem from the fact that I had surgery last August a complete debulking by the time I had my first scan seven weeks later I had a 4cm growth which is pretty quick, wouldn't you agree.? I guess that if I don't have symptoms I should be glad really. I guess I will just wait and see what the next scan shows. Thanks for your advice. Xx

[coksd in reply to Lyndy]

Hi Lyndy Did they decide to wait until you developed symptoms until they decided for more treatment I was on avastin only since June I had 12 in total it was starting to affect my kidneys and my CA 125 was up a bit, i have some enlarged lymph nodes and i have small volume ascites I went to the GP today and he isn't too concerned I am going for a second opinion on wednesday as I booked it last week and not happy with onc anyway. Do you get any pains or any sickness. I am a bit scared not on anything to control the cancer just natural oils and cbd paste for now. Thanks Clare xxx

[Superkim]

Hey there, Mags.

I was on Avastin for almost 2 years when my CA125 began to climb. When this trend continued, we did some tests to find out that there was fluid around my lungs that had to be drained. (not as bad as it sounds). After that my doctor kept me on the Avastin but added other drugs to the mix including cytoxan and femara. When they stopped working, I had my second set of 6 rounds of carbo/taxotere. That ended in April of this year and I have been on Zedula (niraparib) since May. My CA125 has been steadily going down and I feel really good.

I didn't tell you all this to scare you, just to let you know that there are lots of routes the oncologists can take and if you stay tough and up to date on the research, there are always new drugs and therapies coming available.

I was originally diagnosed in 2007. While there have been some rough moments, I make sure that I feed myself good food, work out, keep my support system in tact and those things have been crucial in letting the chemo do it's job while remaining as healthy as I can.

Good luck to you!

Sincerely,

Kim

[Lewisriley47 in reply to Superkim]

Sorry to hi Jack Mad Mags post and I see you have been on zejula since May. Can I just ask are you on three capusules a day, as I am considering asking the oncologist if I can lower the dose as I am hardly sleeping even with a sleeping pill! Also do you take your capsules in the morning or evening.Thanks Pam x

[Superkim in reply to Lewisriley47]

No, I am on 2 pills. 200mg. My oncologist wanted the fewest side effects with maximum efficacy. Aside from some tongue sensitivity, I'm not having any adverse effects.

[Lewisriley47 in reply to Superkim]

Thank you I will definitely see if I can lower the dose as like you I don't having adverse effects.

[Superkim in reply to Lewisriley47]

If the drug is working for you and the docs want to keep you on it, it's worth asking. Good luck!

[Mad_Mags in reply to Superkim]

Thanks Kim and I hope this doesn't sound off but in a way it's good to know that you are still well and very positive after so long on treatment. It really has given me hope and I feel a !ittle more relaxed about the whole situation. Hope you continue to be strong and well. Take care Mags xx

[Superkim in reply to Mad_Mags]

For me, the biggest ah ha moment is when I realized that cancer is very often a chronic disease. If you can wrap your head around the idea of dealing with it and moving on, it's easier to move forward. If you go into remission and stay there, great! If not, you're ready. At least that's what helps me. Attitude and support help me out exponentially!

And I'm really serious about the food and exercise. If your body is stronger, your recovery from any meds and side effects will be easier. Eat a lot of whole foods, greens, berries, legumes. Meditation, yoga, walking....all really helpful when you feel run down.

I've also been looking into fasting. There is a lot of new research regarding intermittent and long term water fasting as a way to heal damaged dna. Just in case you're interested.

I'm routing for you! xoxo

[Mad_Mags in reply to Superkim]

Hi Kim I am really impressed with your positivity it comes through really strong, you are an inspiration! Hope you don't mind me asking but what grade was your cancer at diagnosis. I was grade 4. When I had my surgery I had heart failure on the table which has made my situation even harder to deal with. Also I have been diagnosed with type 2 diabetes. I totally get what you mean about staying healthy though. I have just finished the 8 week diet plan to cure my diabetes and am now medication free for that. I swim regularly and hike at least once a week with my husband, sister and her partner. I eat really healthy and I am working on getting stronger and stronger. Very interested in the water fasting thing especially since I have the BRAC1 gene do you have any links to information I could look at please?

[Superkim in reply to Mad_Mags]

I am leaving work now, but I will send some links tonight.

Grade 3C in 2007

Two major surgeries to remove tumors in 2008 and 2014. (other minor procedures)

Sounds like you've had quite an ordeal and are doing a lot to stay active. Stay strong and I'll send you some info that will hopefully help

[Mad_Mags in reply to Superkim]

Thanks so much Kim xx

[Superkim in reply to Mad_Mags]

I've added some links that I hope will be useful. I figure I will go where the research leads me...and so far, it's led me here.

articles.mercola.com/sites/...

Walter Longo - a little technical, but he's the expert in the field

healthpromoting.com/

The TrueNorth Center in California where I plan to do my water fast.

rogelcancercenter.org/livin...

A reference of healthy whole foods

nutriciously.com/vegan-doct...

A list of all the plant based doctors and their links. I follow all of them. They are pioneers in their field. Each one has really good info. You can find all kinds of videos on youtube.

I hope this helps!

[Mad_Mags in reply to Superkim]

Thanks Kim I will definitely do a little research and good luck with everything xxx

[coksd]

Hi Mags I am stage 4 too I was diagnosed last november started Chemo with avastin from dec to april my lowest ca 125 was only 181. I then went on avastin from June until September 6 sessions I had 12 in total was CA 125 went up to 395 then I had a CT scan it dropped back to 310 and that the avastin has started to affect my kidneys and too me off it so Im off it now and it is worrying. I am going to seek a second opinion this week, I am on watch and wait until I develop symptoms I have been offer two chemo-therapies to consider Gem and Caeylex so there is a plan but I wish there was a better one such as immunotherapy I have enlarged lymph nodes and small volume ascites in my tummy. I am taking Frankincense oil and CBD paste and juicing. every pain or tinge is worrying. keep us updates how you are getting on Take care Clare

[Mad_Mags in reply to coksd]

Hi Clare I understand your worries it's difficult to cope with the fact that there's something inside you that may harm you. If it was on the outside you could see whether it was healing or not! I hope the situation improves soon for you and good luck with your treatment xxx

[MostlyHarmless]

I've given up asking this question at clinic as none of the doctors or nurses will give an answer. I get the impression they just wait until the cancer comes back then look at options. My CA125 was going up but slightly but has now reduced again. I wasn't too worried because I was warned it might vary a little. I had an extra scan last week as I wasn't feeling 'quite right' - lots of little things which, as a whole, were making me uncomfortable. I also have a lung nodule but I was told it was probably there already and not a problem. On a positive note (I know, not like me to be positive is it?) the results came back with no change from the last one done in June - no new growth.

[Star_Trek]

Monsters came back immediately.