Avastin

[Catlin]

I am new here. Ovarian cancer Stage 4, inoperable. After completing one line of Taxol/Carbo I am now on just Avastin every three weeks. Would like any advice on supplements to take with tis, or any to avoid. I heard that it causes joint pain for many ... anything I can do to prevent this?

[Katmal-UK]

Hi Catlin. I was on a trial for Avastin in 2007/8. Didnt take any supplements. Yes it did give me achey joints but I worked full time on treatment so it wasnt that bad. Also keep tissues handy as another common side effect is a 'snotty' nose. Good luck with it xx Kathy xx

[Nancy222]

Hi Kathy,

Hugs on the diagnosis. One thing I've learned from hanging around this forum is that it's filled with super smart women that will help you.

When I asked about supplements when I was on treatment, the oncologists all said no. I honoured that, and actually still do. But sometimes I wonder... So, I'll be following your post.

[harpist_UK]

I found my year on Avastin easy - it gave me a good quality of life and not much stiffness. I kept exercising and walking a lot and I'm sure that helped. I hope it works for you!

[Purple-iris]

Hi Catlin

I finished my year of maintenance Avastin this January. It was much easier than chemo and I managed to get back to the gym and Zumba with the help of some physio after chemo .

I did get aches and stiffness in my legs and first thing in the morning could hardly move but once up and moving around this would wear off mostly . Enjoy lots of dog walking .

I think it can affect any areas where you have any inflammation or arthritis. My weakness before diagnosed was my knees and I had a couple of weeks where these were particularly bad but I was having physio at the time and this helped.

As Kathy mentioned it can affect your nose and sinuses . I used to get congested throat overnight and had to sometimes get up and rinse my mouth .

Also causes fatigue which would sometimes just wash over me from no where !

But very doable and I wouldn’t hestitate to go back on it again if / when I need it and can fund it as only available at present for firstline on nhs in U.K.

I was told NOT to take turmeric as a supplement as it has a blood thinning affect as does Avastin . Also not to have dental treatment . My gums were always sensitive and I did get more bleeding when brushing my teeth. Going to the dentist soon and not looking forward to it !

Good luck with the avastin and hoping it does it’s job for you with minimal side effects.

Love and best wishes Kim x 💜

Stage 4 Uk London Guys

[Pendle99 in reply to Purple-iris]

Your post has brought music to my ears. Before OC i went to at least 2 zumba classes a week and i miss it so much! I have 2 more rounds of chemo then just the Avastin for a year. Hooray I will go to zumba again xxx

[Purple-iris in reply to Pendle99]

Yes I love it . Has definitely helped my recovery both physically and mentally, great for the brain to focus on something. Have also started Latin and ballroom dancing classes again as used to dance many years ago .

Best wishes for your remaining chemo.

Before you know it you will be back to Zumba . As they say ‘keep dancing’

Love and best wishes Kim x💜

[Irisisme]

Hi Catlin,

I was on Avastin but can't add to good advice in previous posts. I had mild nose bleeds but just slightly inconvenient.

Baths with Epsom salts may help the joint pains (if you haven't got a PICC line in).

Good Luck,

Iris x

[Kryssy]

Hi Catlin,

As there's nothing on your profile I don't know exactly how much cancer you have but, like me, you are stage 4 so know it has spread outside the pelvis. Also you are inoperable like me and there's a very good reason for that so I hope that you accept that you are better off without surgery. I had carbo/taxol for one month and then another tax drug and then carbo only for the rest of the chemo. Avastin was started with the first chemo and now I'm on 3 weekly avastin only. I did get aches in my back and knee and was told that the avastin can cause aches in weak muscles or, like Kim says, it affects arthritic joints. I've a prosthetic right knee because of an injury and it's a bugger - but then again it always has been. I've always had a problem with my lower back so expected aches there too. To alleviate the aches if they get too bad I use Diclofenac gel which I get prescribed free. I take extract of New Zealand Green Lipped Muscle every day which helps the joints. I don't have arthritis, except in the flipping plastic knee - which I didn't have before by the way.

I take Vitamins B6, C (2,000 mg), D3 and E. I did try B12 but it pushed my potassium levels up too much. I also take Omega3 fish oil and Magnesium and a good probiotic, I did take L-Glutamine and Alpha Lipoic Acid last year after the taxol almost paralyzed me and I take it a couple of days before each avastin dose now only as occasionally I get the tingling from the PN increase a little. I've always taken supplements so this lot is nothing new. In fact, I take less now than I did before cancer. I rarely take conventional drugs, except chemo of course as that would be stupid, and indulge in the odd whacky bun for my MS. (Jeez! When I list my ailments it's a wonder I'm still here.....). Oh yes, I do have a small ulcer way up in the bridge of my nose which tends to bleed a bit more since the avastin. It's needs cauterizing but I can't be bothered having it done. Lived with it for years so will continue on - maybe.

I've been lucky not to have blood pressure issues with avastin all through and I can't really say that I get any side effects with it now - supposing that raging flu has nothing to do with it. But, as you know, everyone is different. Some girls sail through with taxol while one dose put me partially paralysed in hospital. There's no rule of thumb. There's always going to be a trade off for something which potentially has the power to help us girls until someone comes up with something kind in the long off future. Whether you can put up with that is all a matter of how you deal with pain. Some girls cry when they pluck their eyebrows We all have different levels of dealing with stuff. I am sure you are going to be a toughie. Good luck and be well. xxxx

[Cnmart]

Hi Catlin, so far I've had six doses and have noticed the following...most of which are just a bit annoying - and not really awful. Hopefully they don't get worse of course:

Nosebleeds , joint acheyness, itchy skin (but no rash of any kind), and recently indigestion and wind (no bloating!!)

Best wishes from Leipzig

Christina

[DanielleRice]

Hi Catlin, I'm in the same situation as you: inoperable late stage cancer, 13 rounds of carbo/taxol (last 3 with Avastin) now just on Avastin. I do everything Krissy does vitamin wise. I'm still waiting for my neuropathy to go away. So far I'm only getting joint pain when I move from sitting to standing but it goes away quickly. I have not had nose-bleeds (in fact my nose bleeds went away as I had them all through chemo). What I have gotten (and it is linked to Avastin) is "geographic tongue." My tongue looks like there are white, lacy maps on it. It makes it hard to heat spicy or sour foods. But the ladies on the forum have been most helpful. It cannot be treated. I was treated for thrush but it is not the same. But it can be managed. I brush with SLS-free toothpaste, and swish and gargle with a bicarbonate of soda solution in water. I've also been trying the CBD oil (hemp oil, without THC, the stuff in marijuana that makes you high) and that has a soothing effect as well. Oh, another thing that I found helpful to know: if you're getting your CA125 measured, don't expect it to stay in one place. It will go up and down so don't let that bother you! Good luck!!

[Hidden]

Hi Catlin, I really cannot add more to the answers the other ladies have given you on here. Yes you get tired all of a sudden so pace yourself, and do take a rest when you need to.

[AndreeP]

Hi Caitlin, I’m in the same situation as you, but I’ve been on Avastin maintenance since August 2017. Supplements have to be vetted by the oncologist to avoid contra-indications. Side effect that I have is some joint pain in my neck and shoulders, very manageable and I find water stretching exercises help a lot. I also have a lot of air build up in my gastrointestinal tract. Avoiding carbonated beverages and over eating helps a lot with this. Sometimes I take an over the counter gas tablet and that gives relief. Good luck and I hope this helps!