Avastin rare side effects

[kristinaapril]

My mom started Doxil and Avastin for her first reoccurence of OC seven months ago. Mid-way (roughly August) through the cycle - Avastin was stopped due to high blood pressure, protein in the urine, and severe headaches. Doxil was continued until October - then stopped as mom decided to explore other options.

Mom got diagnosed with both Posterior reversible encephalopathy syndrome (PRES) and nephrotic syndrome likely due to the Avastin. Oncology and Neurology both expect these conditions to get better with time; but I was curious if anyone else had experience with these side effects of Avastin who could give any insite.

On the plus side, moms cancer burden is low (even though she was on a single agent for most of second line and stopped chemo in October) and CA 125 has come down on it's own. Since mom's only side effects are due to the chemo and not the cancer, Oncology put mom on Letrozole to help keep the cancer stable and allow her body to heal from the last chemo. If anyone had Letrozole, what were your side effects and how well did you tolerate the drug?

Hope everyone is doing well,

Kris x.

[Maus123]

Hi Kris. Hope your mom feels better soon, now that chemo is over.

I've been on Letrozol for 4 months now (on Avastin for over 7 months), and for me the side effects seem to be quite manageable (certainly preferable to Tamoxifen, which made me nauseous half of the time, urgh) . A bit of very occasionally feeling hot and bothered for a few minutes in the evening, and general tiredness (who knows, that could be Avastin as well) is all so far.

My rehab doc adviced me to take it in the evening instead of morning, to sleep off any potential immediate effects.

All the best for your mom. Maus

[Cnmart]

I've nearly finished my 15 months on Avastin - and I have suffered from headaches for quite a bit of that time - they got progressively worse in the last few months to the point where I had a brain MRI just to check - nothing to see, thank goodness. I find that migraine tablets help a bit...and to be honest they've very recently got less severe. I have had numerous joint pain issues, nose bleeds, stomach pains (indigestion) and tiredness on Avastin...which have all been tiresome, but nothing so serious that would make me stop taking it. Sorry to hear your Mum has had a bad time. xx

[Di16]

I've been taking Letrozole since April, take it in the mornings, find it easy to tolerate, & have little in the way of noticeable side effects. I have sometimes suddenly felt a bit hot in the evenings for a few minutes, but it's not difficult to deal with. I get tired, & mentioned at my last oncology appointment that I didn't know whether it was due to Letrozole or cancer. She suggested probably both. Di

[kat98116]

That is really interesting and concerning! I was put on Avastin/Doxil in June for my first recurrence. It did nothing so I switched providers to an integrative practice where I get low-dose weekly topotecan with Avastin every 2 weeks with IV Vitamin C. It seems to be working so far with CA 125 declining. I seemed to be doing fine with Avastin until about 3 weeks ago when I kept getting progressively worse daily headaches. My BP is bordering high, but so far ok as I normally run very low. No protein in urine so far. Anyway....they reduced my dose of Avastin by 50% this week and the headaches are fewer and lighter. I, too, suffer from the stuffy/bloody nose thing daily. It took a bit to convince them that the Avastin was causing the headaches even though it was a known side effect. I was on full dose for 6 straight months without a break....duh! Hope the letrozole does it for your mom!

[Jemjam in reply to kat98116]

Hi Kate, if you don't mind my asking where/what is the name of the integrative practice you switched to? I'm here researching for my mom. Best wishes to you.

[kat98116 in reply to Jemjam]

Happy to! Seattle Integrative Cancer Center, Tukwila, WA. Dr. Nick Chen.