My Ovacome
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Confused and in pain. Can anyone help?

Hi everyone. I hope someone can give me some advice.I have had first line chemo (taxol and carboplatin) and I have had 11 of my 18 avastin infusions and am delighted that my Ca125 has dropped to 23 from over 11 000 at the start. Unfortunately the more avastin treatments I have, the worse the side effects become. My neck is sore, my feet hurt when I stand up, I am absolutely exhausted all the time, I have headaches, mouth ulcers and joint pain in my right thumb and hand. This is making it more difficult for me to open tins, peel veg, write and even to drive.

I am on the Icon 8b trial and am really grateful that I have been able to have Avastin and I know that it has been helpful in reducing my Ca125 but I don't know if I can keep going with it for another 21 weeks. I feel in such a dilemma. Can anyone offer any advice? Thank you

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Hi Have you discussed this with your trial team? They may be able to lower the dose or offer some advice. Hope you are able to complete the trial especially as you have done so well regarding your CA125. Big Hug xx Kathy xx

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Thank you Kathy. Sadly this is the dose I have to have. It's all calculated by your weight. Thank you for the hug - greatly appreciated xx

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Hello

As Kathy says discuss with your team.... I made the decision to stop Avastin after 16 sessions..my Onc told me that they don't actually know how many sessions are optimum. In the meantime I would have thought anti inflammatory painkillers like Naproxen might help- I take these for Rheumatoid but I'm sure they helped with Avastin. Don't put up with pain...it makes you very tired.

Why don't you call the CNS or your GP right away? Xx L

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Thank you Lyndy. I am seeing my onc on Thursday. I had to have a CAT scan last week because I keep getting breathless. Luckily it was clear and I don't have the blood clot they feared. I will talk to them about Naproxen. Thank you xxx

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Hi, I know how you feel ! I hurt from my neck down to my feet. My wrists are weak now, I can't turn my head and walking is becoming even harder, finger joints are also swollen. The skin on my hands and feet has started to peel off leaving it painful to walk as my heels and toes are sore. I've had 21 treatments now and I'm having to pay for it myself. I do think why am I putting myself through the pain of the drug and the financial hardship it is causing. But I know I shall carry on with it as long as I can pay for it as my ca 125 is still 12 after 13 months of a recurrence. I just wish I could get funding for the drug. So I do understand how you feel but I would carry on with it as I am. X

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Poor you. It sounds like agony. I really admire your strength and determination. I'm very much in awe of you and would love to continue with the treatment but I'm not certain that I can. Thank you so much for your reply. You really are inspirational xx

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Hi there yes the foot pain and knee pain is unreal and I ended up wearing ankle and knee supports, I used paracetamol for the pain, I would suggest you get shoes which are supportive to help you balance your legs, I wear asic gel runners for walking and supportive flats or boots for this time of year. Soak your feet in a basin of epsom salts. You can now buy it in Dealz. If you want you can also put a cupful in your bath water. It took me about an hour to melt out in the mornings. I found a little walking on the flat helped a bit. I had about 20 sessions in all. I began to improve once treatment had finished

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Thanks for that. That sounds like very good advice. I have been soaking my feet in epsom salts but it is the right thumb and right hand that are really causing major problems at the moment. I find it painful to open tins or write or even drive very far. It's reassuring to know that things improve when treatment has finished.

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I’ve just had my 16th Avastin (out of eighteen). I was selected and randomised for the ICON8b trial but was withdrawn at the last minute because they thought I had a tumour bothering my lower bowel (I didn’t!).

After 6 cycles of Carbo/taxol with my operation in the middle, they decided to give me the Avastin. I can’t say it’s been easy - the tiredness is fairly debilitating and I also have pain in my neck and shoulders. I can’t take Ibuprofen type drugs due to acid reflux and asthma, but I think it would help if your team agree. I have very sore mouth and gums, but can control this to a degree by not eating certain foods - crisps are particularly problematic and certain acidic foods like tomatoes are a no-no! I use a babies toothbrush and toothpaste which is very gentle compared with adult stuff.

I get very frustrated with the fatigue and have just started to have acupuncture which I am told may work. If you can, and of course it depends on your situation, pace yourself - I try to do something active every day (my new active, not like I used to be). Wednesdays are always busy - horse riding and dancing and I have to get a birthday present tomorrow, but I’m reserving Thursday for a rest (although it does include a CT scan)!

I would chat with your CNS for advice and although it would be great if you finish the course, you are the only person who knows how you feel. Good luck and best wishes, Ali x

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Thank you Ali

I will certainly speak to my team tomorrow and see if they can offer anything that will help me through the next cycles of treatment xx

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Hi

I had Avastin after 1st line treatment also and had many aches and pains. My oncologist seemed to think it was still an after effect of the taxol, but reading and listening to other ladies, it appears to be all done to Avastin. The pains eased after a while but I still felt tired for a long time after. Have you tried BioXtra mouthwash plus Mycostatin for mouth ulcers? I find these are very effective.

Best wishes

Juliet

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Hi Juliet

I will have a look out for these. It's always good to get a recommendation. Thank you x

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Hi

I too had a lot of side effects from the Avastin, fatigue being the most difficult and frustrating one closely followed by foot pain. They completely peeled about half way through but only once! I was given naproxen plus omeprazole to protect the stomach and I now wear soft comfy shoes! As others have said, do discuss this with your onc and CNS as there will be things they can suggest to help. Sending love and hugs

Jane x

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Thanks Jane. Greatly appreciated x

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Hi

It's strange how the chemo drugs affect us all differently. Back in August I had my first carbo, taxol avastin dose. Two days later the neuropathy started and two days after that I was hospitalized with paralysis from feet to hips and both arms and hands. Excruciating pain. But it was the taxol that did it. After that they wouldn't give me taxol again and I had taxotere once. Hospitalised again with severe vomiting. Now I have weekly carbo and avastin only and after about six weeks I don't have any side effects at all. Neuropathy going week by week and I'm getting my life back.

I tell you all this boring stuff as maybe you are experiencing something to do with a taxol avastin conflict. The taxol is a nasty substance and some can't take it. All of the people I've met in chemo are on avastin as a deterrent either with regular chemo for their particular cancer or avastin only. None have side effects from avastin, except a bit of fatigue. I am one of a small majority of baldies so I know who has had Taxol and they all have varying degrees of neuropathy.

I don't live in UK so get avastin as standard but I know how precious it is for most of you. It seems to be having a great effect on you too with a brilliant drop in CA125. I don't take any other meds as anti sickness and mouth drugs don't agree so Dr Onc stopped everything except Emend for three days during chemo and two days of steroids. Before each chemo I get an infusion of something which stops side effects, can ask the name next week if you like, then avastin, then carbo and finish with an infusion for flushing it all out.

Do speak to your team as perhaps the avastin isn't the baddie here but as I said, we are all different.

Good luck

Kryssy xx

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Thanks Kryssy

My taxol and carboplatin chemo stopped in march so I am only on Avastin at the moment. I will ask them tomorrow whether they think it might be a conflict. The trouble is that we are letting so many toxins into our bodies, it is difficult to see what exactly is causing the problem xx

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Hi, I agree with all the Avastin comments I'm now on my 62 infusion, and last few days my thumb and middle finger so painful if I knock them by accident the pain I want to cry! I am tired at times and my joints ache constantly, my nose is the worst,at one time it was waking me up every hour at night running and burning as if a needle was being thrust into it, then in the mornings so blocked up, stolid, I have to use a salt spray! But just as I was going to come off it slowly it decreased, just runs and occasionally burns. All the time I have to keep telling myself this is what's keeping me alive and quite active. My ca125 has come down to17, and I've had a scan yesterday will see prof to see if they will carry on as I know this Avastin is so expensive. My downside is being canulated, I seem to be given junior nurses every time so I come out with lots of cotton wool over my hands and end up black and blue. Twice I've been booked in for a port first time my blood pressure went awire, they thought I would have to come off, then it righted itself, and the second time my protein went mad so cancelled again, could be third time lucky or something else will crop up!!

Sorry for the ramble, I read the comments everyday, but I don't feel I have much to offer with advice in comparison to most of u ladies I've learnt much from u all

Thanks

Michele

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Thank you Michele It is encouraging to know that others have continued with the avastin despite all of the nasty side effects. So sorry to hear about your canulas. They sound painful xx

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Help may be on the way for you. I think it is not the Avasin, and here is the reason. I am on Carbo- Taxo large dose every 3 weeks,l but NOT Avastin. I have had great pain in my joints - fingers, wrists, ankles, neck, ribs, and skin in neck and chest, also, tingling in fingers and bottom of feet.

I have relief now from my oncologist.

First, vitamin B-12 and magnesium, both otc, which have decreased the pain. Yesterday, he prescribed otc Tumeric, daily, and changed the Magnesium to prescription strength ESOMEPRAZOLE MAG 40 mg. Daily to get these symptoms down further. And I just had my last round yesterday - so it's obvious he believes these will bear fast acting and I agree, as I got relief within 4 days of starting the b12 and magnesium tp improve the worst of my cycle within 3 days and they did!

Also Benadryl can be taken at the worst time to help - I had no idea it is a mild muscle relaxant and will help you sleep.

Please ask your oncologist about these tomorrow! I think you may get significant relief and might be able to stay on the Avastin without the worst of these symptoms!!!

My best to you and very gentle hugs!!!!

Judy

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Hi JUdy

Thank you ever so much. I'm certainly going to talk to my onc tomorrow about these supplements. They sound very promising. Thank you xxx

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Wonderful! Please let us all know what your oncologist says and does.

Also no need to be pushy but feel free to question your oncologist why if he says no.

All That input may help others.

All that input may help others.

I forgot to tell you before, Be sure you are getting plenty of fluids - at he least 68 ounces a day of non caffeine beverages. I'm in US so you can convert to liters.

Good luck tomorrow.

Big hug,

Judy

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P.S. I totally agree with the comments regarding supplements for the neuropathy. Also, Taxol can bring on neuropathy many months after you've finished so don't be fooled that because you finished in March that it can't be the problem. Someone on the forum suggested I try L-Glucamine so I did some research and found that Alpha Lipoic Acid was also good for dealing with the neuropathy and is given to chemo patients in US and Germany, often before they begin chemo. When I was released from hospital, still partially paralysed with it but able to shuffe about but not even able to cut up my food nor hold a cup, I started my L-G and ALA and just two months later I can run (a bit) walk well, do pretty much everything except that the very tips of my fingers and some toes are still numb. Most of all, no pain. Each week there is improvement. Dr Onc was very impressed yesterday when I saw him in the chemo clinic and he has always said to continue taking them as he's keen to see how I respond so that he can inform other patients. I was the worst patient with neuropathy that he'd ever seen and to be in that state after just 2 days was unheard of. At the time I just wanted to die to be honest.

I know I'm on a reduced third dose of carbo/avastin every week so perhaps that may be an option - provided you don't live a long way from chemo. On the down side, my body doesn't totally recover of toxins before I'm blasted again but my bloods are done weekly and so far I'm good and no side effects. My heart rate is fast and I had another cardiograph yesterday but all was good. They said I was having too much caffeine but I don't have caffeine in anything, not even tea. When I got home I told hubby and he admitted that he's been making me caffeine coffee to help me be less tired. Just forgot to tell me!!! Not had any since yesterday or today and already my heart rate is easier and doesn't thump through my chest. He's either trying to kill me or is just going through the over thinking process. Hmmmm ...

Let us know how you get on tomorrow but go armed with information and ask questions.

Bon chance.

Kryssy xxx

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Thank you Kryssy

I had no idea that the side effects of the chemo could last so long. I'll see what they come up with tomorrow at the appointment.xxxx

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How did your visit go with your oncologist? I'm hoping you will get relief.

I go into the side effects of my 4th carbo/taxol tonight or tomorrow, and am most curious if the addition of the stronger magnesium and turmeric will make an additional improvement in the side effects. I will post when I know more.

Big soft hug.

Judy

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