Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
OVdialogue – consider joining our team in the role of Community Champion. Over a few hours each week, you would be part of a team that helps connect people, support conversations and are thought leaders for OVdialogue. This is your opportunity to give back to those who have/continue to support you through the tough times, share your unique experiences, and help celebrate successes. For more details of what this entails, please reach out to @Mfallis (mfallis@ovariancanada.org).
Ovarian Cancer Canada is thrilled to share that we have some exciting updates on the way for OVdialogue. These enhancements are designed to strengthen our community and make your experience even better.
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Stay tuned for more details, and feel free to share your thoughts below. Let’s make this community even stronger!
Side Effects from Avastin
The complete list of side effects possible for Avastin are truly scary. My PMH oncologist wants me on Taxol and Avastin weekly starting next week hopefully to try to slow the growth of my rare and very aggressive stage 3C ovarian cancer spread everywhere in the cavity. What has been your experience on these drugs? Obviously, if it gives me more time, it's worth it...
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Hello @BellaDonna1959
I have read your post and have you tried typing Avastin in the search bar to see what others have said thus far about it?
Reading about side effects can be scary and anxiety can also creep into this as well and it is very difficult to not experience this. I think one should consider (when looking at side effects) is this, not everyone experiences them (and/or) all of them at once. Some have no side effects at all. Sometimes our choices for treatment aren't great as they do cause some side effects and it would be wonderful if they did not cause any at all. It is not the reality and we have to make the decision as to what is best for your current state and what the risks are should you decide not to.
As you mentioned in your last sentence, you have to weigh what benefits/risks are regarding taking or not taking them are and how you want to proceed with things. It is great to be informed and then use this information to discuss with your team as to what would be best and unique to your own situation. Have you asked about going on it and then if you are not tolerating it well, what options there are?
I wish you the best in whatever decision you choose.2 -
@BellaDonna1959 I'm going into my 9th cycle of Avastin/Caelyx next week. Day 1 of each cycle is both drugs, Day 15 is just an infusion of Avastin alone. As Strongwoman mentioned, we all react and respond to our treatments in our own unique ways. For me, the only side effect I can attribute to Avastin is my hoarse vocal chords and dry mouth. Totally tolerable when I think of the positive effect Avastin is having on making my Caelyx treatments stick. And for me, the list for Avastin isn't particularly scary to me either. Nothing there I haven't experienced from other drugs and was able to manage then as I would expect now if they occurred. The more annoying for me are the Caelyx side effects and so far I"ve been very lucky that they haven't hit me so far.
But wise of you to research before committing. I always think be prepared for what we could expect is half the battle in managing side effects that do arise. Good luck to you.0 -
Thanks for this. I met with Credit Valley onc who will oversee my treatments. He cautioned me that Avastin may not be covered as I'm 'platinum refractory' rather than 'platinum resistant' but he will go to bat for me with the government and have the hospital go to bat for me with the drug maker. It's always some damn thing or another. I start Taxol alone next week- low weekly doses - until we sort out the Avastin issue.0
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My problem with Avastin is constant nose bleeds. I do have other reactions but Benadryl takes care of them. I’m also on blood thinners due to cancer/chemo, causing clots…..so this doesn’t help my nose situation. Has anyone had trouble with nose bleeds?
thanks for any input/advice🥰
Lucy0 -
@LUCY_BC
Nosebleeds can seem minor but can be tough to deal with especially if they are frequent or if they need to cauterize
I had nosebleeds that were very bad as a kid and frequent and was told to run wrists under cold water until they stopped. So keep switching hands. It helped every time.
I do recall @Fearless_Moderator mentioning Nosebleeds as a result of a treatment. I am sure she has some insightful tips.
Hoping you receive some great info and that one or a couple things will help navigate you through them.0 -
I am also on Avastin, and having side effects or symptoms that I am unsure of their origin. Is it just a continuation of the chemo effects ( my last dose was mid-Feb), or are they a side effect of Avastin or are they symptom of on going active cancer. I’m not sure, and no one seems to know at this point, or at least willing to say. The most prevalent symptom I have is pain. Pain in my joints and muscles and lethargy. I’m told that Avastin has few side effects, in spite of the litany of s/e on the product info.0
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@BellaDonna1959 @LUCY_BC @Strongwoman
Strongwoman is right. I was on Avastin, actually a combination of Gemcitabine and Avastin for over a year. Every one of us is different and I managed to get through it with very few of the side effects and those that did emerge were so mild they did't interrupt my days. As a preventative I did use a very thick cream on my hands and feet every night before bed and in the morning and rinsed my mouth after tooth brushing with a combination of warm water and baking soda to help prevent moth sores. But the sores never developed in me as they did with a number of our members here. Some had it very severe. Enough to incapacitate them until their bodies adjusted to the Avastin and the sores lessened. For me the biggest issue was my heart. I went into to with a very strong heart and ended up with heart failure; that meaning not a heart attack but my heart function has been affected. We think that is a result of the Avastin for so long. Yes, I did get those silly nose bleeds. That side effect lasted about a month and seemed any time I leaned forward my nose would bleed. Fortunately it stopped quickly when I rammed a wad of cotton up my nostril and sat still for a bit. That side effect eventually went away thankfully.0 -
I am on a treatment break from Taxol/Avastin after 5 cycles (Taxol every week for 3 weeks and Avastin every other, then a week off) I have been off treatment for a month now. But when I was on I had blood clots in my nose and a lot of mucous in my nose and throat, bleeding occured when I blew my nose which was a lot but it did not run on its own. I also had a rash around my nose and mouth. It seemed to get worse the further away from treatment I got. A month off and the rash seems to be spreading and getting redder, my nose clots are gone but the runny nose is still there though less. I believe these are all Avastin related as I did not experience this when on Carbo/Taxol
I am now experiencing joint pain that I did not experience while on treatment which I find perplexing. Bending, squatting etc is much more difficult than it was while on treatment. I wonder if it is bc the drug is leaving my system. I read (somewhere) that the half life for Avastin is 28 days.
The rash is becoming unsightly. Has anyone else experienced a rash on your face like this and what did you do? Also has anyone experienced increased pain in the bones and joints the further away from treatment you got? Thank you.0 -
PS - my eyes are also very dry and itchy. When I wake up they are stuck together and sometimes feel like there are particles in there. Not sure if anyone else experiences this but thought I would throw this in there as well while on the topic. thx0
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My eyes drain as well, often stuck together in the morning. @mjmck21 the rash you are having, needs to be reported to your oncologist. Yes my bones and joints hurt a lot, even on morphine. I don’t know about anyone else, but when I’m having such persistent pain, I can’t help wondering if it’s another cancer. I know I’m being overly sensitive as far as cancer is concerned, but……it’s the nature of the beast0
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@MaryCatherine It is difficult to not let our minds go there especially when we are "fine tuned" to pick up on nuances within our own bodies.
I, too, have constant (chronic) pain but mine is back related which correlates with the internal abdominal pain due to reference. As for bones/joints being achy what also can occur is muscle atrophy (wasting) which can be from a myriad of things including: non-use, aging, medication, medications that cause bone loss which then causes the muscles to work harder to protect the spine etc, Those are just a few that come to mind. I do my best to be active, some days I am a little quicker and other days our elderly dog could do laps around me! I take it as it comes and feel it is all part and parcel with my new norm. I don't care for my new norm but have accepted there isn't much I can do to change it.
@mjmck21 I concur with @MaryCatherine and feel you should report your rash to your team sooner rather than later. If you have not already done so, take pictures as well. My rash when I was on the trial drug ended up being a toxicity to the drug. I did not find this out until months after. At the time I was only told "this is the worst rash reaction I have seen yet". So, please reach out to them especially if you don't have an upcoming appt. It may be very beneficial to you and to your recovery from said rash.
Due to surgically induced menopause, I find in general everything is much dryer. As for the eye issue, mention it in case there is something out there that can help to minimize what you are experiencing.
As mentioned above, very difficult to keep our minds to wandering into the "what next" or "what if" when we experience symptoms. I believe it is normal to experience it as long as we don't get stuck in it. I am doing my best to think like a child and find "newness" in the small insignificant things we take for granted, Like sunshine, flowers, smells of things, reminiscing etc. That stuff usually puts a smile on my face and takes my mind off of what it was stuck on. Hoping that may work for others as well.
Take care ladies and look forward to your future posts!0 -
@mjmck21 @MaryCatherine
Mjmck21 is right. Always report side effects to your cancer care team, especially skin rashes or issues with your eyes. I had neither while on Avastin myself; in fact had an easy ride with it. But we all respond differently. Your care team will be familiar with your symptoms and be equipped to help if they need treatment.
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