I am also researching clinical trials and will discuss them with my doctor early in the new year. So, I am just navigating through the plethora of information for each trial to determine which one(s) are most suitable for my situation.
It does sound like we are on a very similar path...different drug combos. It is always interesting to hear how others are being treated. I like to have the information in my back pocket so that I can raise potential treatment options with my doctor who can then explain why that particular combo would/would not work in my personal situation. I like to keep her on her toes...I am proactive and determined!
What is the schedule for your Taxol/Avastin treatment? Weekly - bi-weekly - monthly - alternating?
Community Connection: Ovarian Cancer Canada is looking for volunteers! Could you help?
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).
OVdialogue – consider joining our team in the role of Peer Support Volunteer. 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 ([email protected]).
Caelyx and Bevacizumab treatment for recurrence
Hi My name is Debbie I was diagnosed in April 2020 with high grade serous ovarian cancer C3. I am having a recurrence and have been identified as Platinum resistant I am staring a new regime of treatment on March 4 of Caelyx and Bevacizumab, I would like to hear from ladies who have experienced this combo treatment, hoping to get some good tips on managing or preventing some of the possible side effects.
Thanks in advance
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I have mucinous ovarian cancer and will be following the same regime by the end of March. Would welcome some input as well.1
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@DebbieK
Welcome to OVdialogue. I"m sorry to hear of your recurrence and that you're platinum resistant, I have heard of great success with the Caelyx Avastin combination though. You might want to order two booklets from Ovarian Cancer Canada...By Your Side (for initial diagnosis and treatment but full of useful information) and Still By Your Side(for those going through recurrence). Both booklets are very helpful in guiding you through your journey and be delivered in both soft and hard copy. I recommend ordering both..the soft copy to have quickly and the hard copy for it's ongoing journaling capability. You can find the order form at https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources
And @DebbieK and @glenda if you go to the search box (top right hand side of your screen just above the yellow New Discussion box) type in key words like Caelyx, Avastin, Bevacizumab to find discussions on those topics. There have been a number of our community in discussion on those drugs fairly recently and you might find those discussion threads informative.
And just a reminder that we hold our live real-time online chats on Thursdays at 1pm EST. Love you join us. Just sign in to OVdialogue and click on the Discussion topic: TEAL THURSDAYS.... to enter the chat.1 -
Thank you Fearless, unfortunately my first chemo is this Thursday but perhaps I can join in next week.0
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@DebbieK absolutley. Our group ebbs and flows as the members have either time or inclination to join us. You're welcome anytime. And good luck with your first treatment. I too am high grade serous and in my first recurrence, although platinum sensitive so my cocktail is Carboplatin and Gemcitabine. So far so good at the half way mark for me so wishing you the same success.
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@LUCY_BC if you want to reach out to a member the way to flag them is either to private message them or in a comment as you did above put the @ sign in front of their screen name. That sends a notification to them there is a message waiting for them to respond. I took the liberty of editing your post above to include the recipient with the flag.
Hopefully DebbieK will see your comment and respond accordingly.
I can tell you that Caelyx is very commonly used for those who are platinum resistant. What it's combined with or at all can differ though. I was eventually found to be platinum resistant and have been on the same course as was DebbieK...Caelyx and Avastin, also known as Bevacizumab since early December last year. That combination has been successful for me with some of my recurrence showing shrinkage and the rest having stabilized. Side effects, for me, so far have been tolerable. Several friends I have made in the six years I've been in treatment are now on the same course that's being recommended for you, Caelyx + Carbo and to my knowledge, while treatment is fairly new for them, they are seeing a positive response. Hopefully you'll experience the same.
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Thanks so much for the info. As well as the positive feedback regarding Caelyx. Question: did you have any issues with your hands or feet while on Caelyx?0
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Hi Lucy, I also recently completed caelyx and the carbo combination. My hands and feet were fine. I did get the mouth sores after the second treatment and there was a slight decrease in my dose. The Magic Mouthwas worked really well. Constipation was also a problem starting a day or two after the first treatment. Other than the fatigue, those were the only 2 side effects I experienced. Good luck1
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@LUCY_BC unlike many of my friends who did experience hand and foot sores, the issue didn't impact me. Like everyone else I slathered cream on both morning and night so I'd credit that, but so did they and still experienced the sores. By the way, Udderly Smooth cream seems to be the the one of choice for most of us. I've had a little tenderness on the edges of my tongue from time to time, and only one mouth sore the entire time so compared to most I think I've been lucky. What I have had is really severe fatigue, a fairly constant sore throat, and a hoarse cough. My doctor has suggested lowering the Caelyx dose in hopes of reducing my fatigue but right now I'm sticking with the full dose. The fatigue is annoying but not unmanageable. Magic mouthwash also works for me for the sore throat and cough.
I've had friends who've had every side effect imagineable, some have had fewer side effects bur more severe and some, like me, seem to tolerate the Caelyx fairly well. Like all treatments, we all react differently so I find it better to prepare for the worst and hopefully be pleasantly surprised.1 -
sorry for all the questions but I’m still so surprised to have my 1st recurrence so soon0
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No worries at all about questions. I know what that is like. Yes, I did receive 6 chemo treatments. I did have a CT scan after the third cycle and then approx. 6 weeks after the last one. My was for a recurrence as well. It's so difficult when a recurrence happens.
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The caelyx / carbo combination worked really well for me.0
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Excellent news, I’m so happy for you. I feel so much more @ ease in trying this new combination of chemo. How often do they continue to monitor?0
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My understanding is that I will be monitored with the CA 125 bloodtest. I may have a CT at some point, but I am in no hurry to have one. They create a lot of anxiety for me.0
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I have just been diagnosed platinum-resistant and am on my second recurrence. I am BRCA-negative which factors into options for drugs that can be used.
Background: My initial treatment was Carbo+Taxol with a 2.5-year remission. Treatment for the first recurrence was Carbo+Taxol followed by Zejula for maintenance. Unfortunately, Zejula was not effective and my second recurrence was diagnosed after two months.
The treatment for my second recurrence is Caelyx + Avistan (Bevacizumab). Avistan every two weeks + Caelyx every 28 days. I expect to start within the next week or two. So sad that it is getting more difficult to get into the hospital's chemo schedule.
@Fearless_Moderator Your journey gives me hope at a time when I'm feeling anxious and unsure of what lies ahead for me. Thank you.
I would be interested in hearing if anyone else has been undergoing this treatment plan.0 -
@GloHo
I'm sorry to hear that you are now platinum resistant. It's a tough place to be.
I too have just become platinum resistant. My journey sounds similar to yours.
I just started yesterday on Taxol & Avistan. Diagnosed in 2018 and treated with Carbo & Taxol, first recurrence last year and had Carbo & Caelyx. Niraparib did not work for me as well. Remission lasted just under 6 months, so I had 2 Carbo treatments as I was on the cusp of 6 months. They weren't effective, so here I am with this new regimen.
I hope you start your start your treatment soon. It's stressful waiting.0 -
Hi all,
Apologies for the lengthy post and I hope this is in the right place.
I am also in recurrence and it was very quick. Not sure its even a real recurrence. Diagnosed Nov 2021 Stage 4, responded very well to Carbo/Taxol (x8) and cyto reduction surgery was considered very successful in terms of what they could see. Last chemo in July but never really got the CA down below 58 and it was slowing increasing. We started Zejula with the hope that it would slow things down end of September and came off of it after 6 weeks because symptoms returned including a pleural effusion. CT scan showed its everywhere, deposits on most organs. I'm in some form of pain or discomfort breathlessness most of the day, although still active - walks Tai Chi, etc. It's devastating. Like others I knew this would return but hoped for at least 6 months.
Now I find I am in a time sensitive situation and seeking some specific information. I also know that anything you share is person specific but I have been dealing with this for a year, know how my body reacts so can safely take in details and use it to critically assist me in my decisions. Treatment begins this Friday I am being given a choice of weekly Taxol and bi-weekly Avastin OR bi-weekly Caelyx and Avastin. I can go into why but thought in the interest of time I would leave this part out for now.
I apologize if this has been discussed but I have been over related posts many times concerning the two options making notes but really could use some further details about personal experiences with these regimens. I will post specific questions that I hope make it easy for folks to respond to. I'm still on the fence here and need to go in Thursday with my decision.
1. I'm primarily interested in anyone who has had experience with both regimens at some point one followed by the other and in any order- weekly Taxol with biweekly Avastin and bi-weekly Caelyx with bi-weekly Avastin or vice versa. I would be very interested in how you would compare your experience between the two concerning side effects impacting quality of life (fatigue, shortness of breath, brain fog, platelets, neutrophils, were you able to return to work at all, travel etc) as well as how the weekly regimen impacted your life. I'm looking at two days a week involving the infusion, oncology appointment, waiting at the pharmacy, blood work etc and everything is backed up so long waits. Were you able to get all of this done in one day for example? Also really important did you and your team observe that one regimen was more effective than another. Faster response to pain, fullness, pleural effusion if you had one ect
2. Or If you just had weekly Taxol and Avastin - same questions as above except for the comparison. I can see more details in the posts on Caelyx but open to other as well.
I'm also aware this may be too in the weeds for the group and would be happy to connect with folks individually in separate messages. Just let me know.
Thanks so much everyone!. These kinds of details will really help me to think through my options.
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@mjmck21 Ouch. For me, given choices drives me crazy. Some days I'd rather my oncologist just gave me one option (the best in her mind). Then again if it's an either/or for you it's good to know if you choose one and don't respond as expected or side effects produce too much discomfort, I'm assuming you can switch over to the other option. If that hasn't been discussed I'd suggest you ask your oncologist about that possibility.
Also, when given choice I know the standard answer to the question " do you think I should choose" is always met with "it's your choice to make". I find phrasing it a bit differently often gets me what I want; that being "if your spouse or parnter had exactly my condition which would you want her to choose?" Works almost every time for me.
As for comparing experiences it's important to remember the response and reactions are individual so what is one person's experience may not be yours. I did go through 13 cycles of Caelyx & Avastin recently and after reading what, in some cases, seemed like horror stories about side effects stretching from excruciating mouth sores or foot and hand rashes so painful it affected walking, I stocked up on everything recommended to ease discomfort. Yet, orher than slathering cream on my hands and feet nightly I never had need of anything else and sailed through treatment with no issues. And my response to the treatment also lasted much longer than the average. So do be cautious about making a decision based on the experience of others. If one protocol sounds more effective than another, remember your team is there to help mitigate any uncomfortable side effects and there is always to the option to just stop the treatment if necessary and look at alternatives.
I have no experienced with Taxol personally so can't compare the two for you. I"m highly allergic to it so it's not considered viable for me. However, I can tell you one fairly consistent outcome of both treatments. Taxol will cause you loss of hair. Caelyx and Avastin cause mild thinnig of hair but no one I know, including me has lost their hair to the treatment regimen. As far as the amount of time spent, for me it was one treatment of Caelx and Avastin lasting about 2.5 hours on Day 1 of each cycle, with bloodwork and a clinic appointment beforehand and then on Day 15 one treatment of Avastin only for about a half hour and with just blood work required ahead. Side effects used to hit (they were primarily extra fatigue, some belly bloating, a bit of constipation, and a hoarse voice) on Day 3 or 4 but generally resolved by Day 5. As I said I was very lucky compared to others. I had no side effects from the Avastin only.
I hope this helps. Whatever the case, I hope what course you choose provides the outcome you're looking for. God bless and Merry Christmas.
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Thanks so much @Fearless_Moderator. What you say does align with what I'm learning so far about Caelyx and Avastin. The 'choice' issue is actually the opinions of two different oncologists and it gets a bit complicated but I am prioritizing quality of life more now so trying to get a clearer picture of what my life would look like under each treatment. I am not someone who does well with choices between options that I don't really want anyway and that are so close. First time around it was all about the treatment and I just sucked up the effects since it was literally saving my life and at first it worked really well. I had a few wonderful months. Now that is not possible.
@Fearless_Moderator you have mentioned the fatigue on Caelyx/Avastin is difficult. At least when you started. Is this still the case? Would you say it is more or less than other treatment options you have experienced? (knowing we all feel it differently, but I was floored by carbo/taxol)
@GloHo the Taxol/Avastin would be weekly. Week 1 would be Taxol and Avastin, Week 2 - just Taxol and repeated. The Caelyx/Avastin would be Day 1 Caelyx/Avastin, Day 15 Avastin, Day 28 Caelyx/Avastin
@gloho if you have any studies you found helpful I would love to see a couple. I would do this as well but find that I have much less time to make this decision this time around.
@hope2022 I will add you here, just noticing you are starting Taxol/Avastin in this thread. I guess I'm interested in knowing a bit more about the decisions that go into each treatment option as well as side effects, recovery from side effects. How weekly chemo impacts your quality of life.
Please anyone else feel free to add in as able.
Thanks everyone!
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@mjmck21
Hi. Had a chance to do a quick review/search of some trials available. Had my chemo treatment this morning, so had some time on my hands. Hoping at least some may be applicable to your situation...if not, let me know and I can continue searching with whatever other criteria is specific to you. I have posted a message to you with the links.
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@GloHo I hope your treatment went well this morning.
@mjmck21
It sounds like we are all on similar drug combinations. I started last Tuesday on Taxol and Avastin. It will be every three weeks for both, 6 Taxol in total and the Avastin will be ongoing. I was given a choice between weekly Gemcitabine or the Taxol every 3 weeks. I am not good with choices, so I went with what my doctor thought may be slightly more effective. I thought weekly treatments might be a little wearing, but then again keeping my hair would have been a bonus too! I made the decision last Monday and started chemo the next day, as my chemo spot had been previously booked. I had Caelyx last year and had not had Taxol for over 4 years.
There was an option for a clinical trial studying 2 standard doses of Avastin, and a chemo drug, but decided against it.
The higher dose is the standard dose for OC and the lower dose is apparently a standard dose for other cancers.
I have some small tumors and one fairly aggressive one by the spleen, so I felt more comfortable with the current standard dose.
I am open to clinical trials for the future, my doctor is right on top of that. You never know when the right one might come along. Sorry this was a long post, I hope it all makes sense.1 -
@hope2022 thanks for the info. How are you feeling on Taxol?. I would love a 3 week option.
The Taxol/Avastin combo for me would be weekly Taxol and bi-weekly Avastin whereas the Caelyx/Avastin would be bi-weekly. To be honest the frequency is where it shifts me toward the Caelyx/Avastin, although at a population level the Taxol/Avastin option is considered slightly more effective and faster. Weekly would basically tie me to the clinic in ways that I'm not sure I could cope with, but then again we all don't actually know what we can do until we get there and a slight chance is nothing to pass at. I'm pretty far along in recurrence though so quality of life that involves seeing people, doing things and having enough good days is important. Anyway whatever we start with, my oncologist says we can move to another option if it doesn't work. But I'm only allowed 1 line in the recurrent setting or I would be excluded from a Clinical Trial at Princess Margaret. This one involves Durvalumab immunotherapy. I'm not basing treatment decisions on the clinical trial however. Makes it too confusing. I will cross that bridge at a later date.
How are you finding your first dose?0 -
@mjmck21
It's been a week since the treatment and I feel good today. The first several days were a little rough, but each days gets better. I had Caelyx last year, so it wasn't an option this time around. It does have a few advantages, keep your hair and a much shorter infusion. I understand what you are saying about quality of life. We all want to have as many good days as we can and be able to enjoy things and have a little fun too! Is your doctor leaning towards one of the regimens? When I made the decision last week between the two regimens, I tried to put the side effects and the frequency of the appts. aside and just went with what my doctor felt was just a slightly better option. I guess only time will tell. I hear what you are saying about the Durvalumab clinical trial. Maybe a good option for the future.
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Hi everyone thanks you for your responses to my questions. I thought I would provide an update. In the end both my oncologist and the consult from Princess Margaret agreed that the Taxol/Avastin combo would be better for me. I have a lot of symptoms again including pain as well as fast spread over many organs including my lungs which is frightening and very painful at the moment. They are unable to drain anything to provide relief as its small pockets of fluid rather than one area. They have ruled out blood clots thankfully
Week 1 Taxol/Avastin, Week 2 Taxol, Week 3 Taxol/Avastin and then surprise! a week off. I can live with this. It gives us about a week and a half after recovery to go away, plan more activities etc. Just hoping like mad that it works to shrink some of this and keep it stable for awhile but especially to reduce these immediate symptoms which are making life really difficult. Last year when I started Taxol/Carbo it worked very quickly. Anyway hoping a lot of that was the Taxol. I will be getting a port inserted as well as well as a psychiatric consult as I am experiencing anxiety that is changing who I am. Last week I raged so much I was throwing things. If you knew me you would not believe it. I am very emotionally measured as a rule. The model patient in fact. Keep myself informed, as reasonable questions, think about how the system is under threat now and health care workers are doing everything they can etc. Also I am following your lead @Strongwoman and looking into palliative care and hospice now so that I have everything set up even though there is still a decent chance I will not need this right away. But it gives me some agency and I don't want to be caught off guard.
Anyway thanks again everyone and hope you all have the best holiday season!!!
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@mjmck21 hears hoping the treatment plan dries up that fluid. It usually does and fairly quickly from my own experience. That should give you some relief. And thanks for sharing your referral for psychiatric assistance. So often we don't recognize we need added professional help to manage the emotional aspects of this journey we've been forced into. Here, our psychiatric assistance is sub-par unfortunately, but I've found excellent support from one of our cancer centre social workers.
Hope you were able to enjoy your holidays and wishing you success with your new treatment and support. 1 -
Thank you @Fearless_Moderator0
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On Tuesday I will have my second treatment of taxol and avastin. I just had bloodwork yesterday and have not received the ca 125 result yet. I feel very nervous about getting the result. Not really sure what to expect. If anyone else is on this regimen, i was wondering if your ca125 changed after 1 treatment. I know we are all different, so it may be a bit of a silly question.0
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@hope2022
Nervousness and anxiety are normal responses. I am not on the same treatment protocol as yourself but in my past experience, CA 125 levels take 2-3 days to come back with results. This may not decrease your anxiety waiting but may ease it a bit knowing that a delay in receiving the response is the norm and not an alarm.
I am interested in hearing from others about what has occurred for them at this same point in treatment.0
