Side-effects

[Shorty864]

Good morning dear ladies,

I have been very down these days, mostly because of the side-effects Avastin has given me - such terrible fatigue (wanting to sleep all day and every day) - have never felt so tired in my life and on top of this I have had terrible backache, along with achy muscles, occasional diarrhoea and top of that the ascites is slowly on its way back (so will need a drain again). On Wednesday I will be having another scan to see if it at least the Avastin is still keeping the nodules/tumors at bay or stable as my oncologist stated last time I saw him.

Did not hear anything from London regarding a trial so as you can imagine I am not at my best at moment.

I am starting to do light gym and walking every day for a short walk and am hoping that this will built up the necessary energy to stop the sleeping all day and for a more positive self.

Sorry to moan my dears as I can see from reading here that a lot of you are not having an easy time yourselves.

Love to you all. Anne XXX

[Katmal-UK]

Hi Anne

Never apologise for having a moan or a rant. Bet there isn't anyone on here that hasn't felt the need at some time or another to do so. You are going through a lot and feeling down by the sound of it. Hopefully you will pick up soon and the exercise helps. Sending you a big gentle hug. Kathy xx.

[delia2]

Hi. What you’re going through sounds terrible. I have pneumonia and it’s nowhere near as bad as the fatigue from chemo. Have you tried palliative care? Maybe they’re waiting for your genetic testing to suggest the next step? You shouldn’t have to be this uncomfortable so I hope your team can try something different!

[Shorty864 in reply to delia2]

Dear Delia,

Thank you for your good ideas, the trouble with palliative care one always thinks that when we speak of them we are nearing the end, which is not necessarily true anymore.

I think I also have to chase up the teams in London for my own peace of mind.

Thanks a lot my dear and a big hug. Anne XXX

[Hidden]

Hi Anne - Moan away! I am told it wont help but I disagree, get it all out of your system. Then get something nice to eat, a nice bottle of wine and a fave movie, shut the world out and indulge, the rest will follow in time. Good luck with your CT scan. xx

[Shorty864 in reply to Hidden]

A big thanks Lyn, just had a nice talk with a doctor at the COC and he was very positive about my bloods which has cheered me up quite a bit. May do exactly as you suggested. Love Anne XXX

[Lyndy]

Sending you a big squishy hug Anne. You are certainly having a tough time right now.

Just make sure they have checked your iron levels on Avastin... mine plummeted and this causes tiredness.

I know it’s probably more than you can face atm but the trial team should at least give you an answer... you have offered to push forward medical science by letting them experiment on you... you deserve their respect.

Keep on keeping on... hopefully things will get better once you know what is happening on the treatment front and you have a way forward. Let’s hope Avastin has done its work for you xx

[Shorty864]

Dear Lyndy,

Will certainly be following up on your suggestions and totally agree with you that I deserve an answer one way or the other - how easily we become bashed up in this situation we live in. A big squishy hug to you and a big, big thank you for your lovely reply.

[Welshandproud]

Sending you a big virtual cwtch. You sound like you need one xxxx

[Shorty864]

A big thank you my dear. XXX

[Natsmb]

Since I too am on avastin and have been for a year-and-a-half now, I completely feel you. It's a really stinky medicine. Yes yes yes yes and yes on all of that. Tired achy hurting muscles fluid buildup plugged up nose. I'm so sorry. Not much helps with the fatigue. My friend who is also on avastin has many of the same complaints. How long have you been on it?

[Shorty864]

Dear Natsmb,

So sorry to hear that you are another Avastin sufferer and I would go on to say almost worse than chemo in the fact that with chemo you usually have 10 days of feeling shitty and at least a week feeling almost normal. Instead I get up every day and spend a good part of it, with hot water bottles, paracetamol and sometimes ibuprofen, before I feel I can face the world. I know I should not complain as it is doing its job, but sometimes it is hard. Love your description of Avastin "stinky medicine" - brought a smile to my face, sitting here amongst my cushions on my settee which has become my home both day and night.

I have been on it about 5 months. Do you also get swelling around your ankles?

However, I spoke to my COC doctor who seemed happy with my blood results, so something to make me feel better, apart from you dear ladies here on this forum.

Love to you and your friend from a very active lady who has been curbed by the stinky medicine - starting gym in a few days!!

Take care both of you.

Anne XXX

[Maxjor]

I think stressing the level of fatigue you are having to your oncology team or oncologist is important--not in passing but as in, what can they do to help you. And it's great you are taking steps (literally!) as I believe as hard as it feels right now, each day you do a little more walking, you will feel a little less fatigued. I don't think it will go away but it may allow you to stay up all day and in turn be a bit more active, helping get rid of at least some of the fatigue. I try to tell those that don't understand---a flat road or level surface feels like a steep hill when fatigued. Hard concept for others to understand who don't experience it--especially as you have it. Wishing you luck with finding some relief soon and good for you for taking steps towards that goal. So sorry you have to suffer like this. Hugs, Judy

[Lizchips]

Huggs Anne, I started taking her pollen in my yogurt I also take a extremely small amount of royal jelly from a local bee keeper. This seems to help me keep my energy up. Warning the royal jelly tastes aweful. I have to chase it with something. Royal jelly is what the queen bee eats she lives 5 yrs workers only 1 yr. I've been cancer free coming up 6 yrs April. I also take tumeric and curcumin. . I buy from local bee keeps, not intranet. Helps with allergies too. Best wishes .Liz.

[LittleSan]

Oh Anne, sounds like you're having a tough time. Not sure that Avastin should make you feel so rotten, it's supposed to allow a decent QOL albeit with side effects. I know I used to have a couple of weeks off to boost me again when it felt a bit tough. Have a chat to your team and see what they think. Wishing you well again. Sandra xx

[Iwillbeatit]

Hi Anne

I sympathize I have same issues . I have had 16 avastin so far and no new tumours or any growth. But so tired, joints hurt like help very stiff, nose sore and get bouts of severe diarrhoea. Consultant told me to walk more which I have been doing. Yesterday walked today in bed can barely move. It's a vicious circle. Good luck.

[Lindaura]

Dear Anne,

So sorry to hear how rotten you feel, but totally understand that you are at the end of your tether.

Especially if the dreaded ascites is sneaking back.

To me, that is always a bad sign and means your team should be trying something new.

Are you on the COC regime? Taking their meds, too?

I have got to say that most Cancer treatments make us feel awful.

They’re toxic, but what else can we try?

Speaking of trying, it looks like my trial, the DICE trial has failed for me for the most part. Once again, it has slowed progression, but has not stopped it.

So, back to the drawing board for me too.

Please get your team to pull something together for you, so you can stop the Avastin and try something else.

This battle is daunting.

Give your hubby my regards,

Hugs,

Laura

[Shorty864 in reply to Lindaura]

Dear Laura,

We are truly between a rock and a hard place.

Have you heard of Andrew Sewell and the new discovery of T-cells raising the prospect of universal cancer therapy at the Cardiff University - on the list is ovarian cancer - trials to start end of this year, hopefully?

Have you gone any further with your research into having another operation?

I am on the COC protocol - had a review from them this week which said: satisfactory full blood count, renal and liver profiles. Don't know where this fits in the grand scheme of things, but like the word "satisfactory".

When informed yesterday by the radiologist of the fact that I would get a dose of radiation, my reply was "if that was worse of my problems!" It at least made her laugh!!

My long suffering husband sends you is regards as well.

So sorry to hear that the DICE trial has not done much, this must be so depressing.

So here's to the next lot of toxins my dear.

Hugs back.

Anne XXX