English Community

 View Only

Log in or create an account to engage on OVdialogue. 

Expand all | Collapse all

Caelyx and Bevacizumab treatment for recurrence

mjmck21

mjmck2112-26-2022 16:45

  • 1.  Caelyx and Bevacizumab treatment for recurrence

    Posted 03-01-2021 16:48
    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 


  • 2.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-01-2021 20:32
    I have mucinous ovarian cancer and will be following the same regime by the end of March. Would welcome some input as well.


  • 3.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-01-2021 21:38
    @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.


  • 4.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-01-2021 21:42
    Thank you Fearless, unfortunately my first chemo is this Thursday but perhaps I can join in next week. 


  • 5.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-01-2021 21:47
    @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. 
     <3 


  • 6.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-08-2022 15:02
    @DebbieK
    Hi Debbie K.  I was wondering how you made out with Caelyx?  I also have a recurrence and will be starting Carbo + Caelyx in a couple of weeks.


  • 7.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-08-2022 19:22
    @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. 




  • 8.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-09-2022 01:08
    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?  


  • 9.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-09-2022 03:17
    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 luck


  • 10.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-09-2022 15:34
    @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.  


  • 11.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-10-2022 00:44
    Hi @hope2022 Did you receive 6 cycles of treatment (I’m assuming) and at what point during your treatment were you monitored to make sure this combination of drugs is working? 
    thx Lucy


  • 12.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-10-2022 00:47
    sorry for all the questions but I’m still so surprised to have my 1st recurrence so soon


  • 13.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-10-2022 03:26
    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. 


  • 14.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-10-2022 03:37
    The caelyx / carbo combination worked really well for me. 


  • 15.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-10-2022 06:08
    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? 


  • 16.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 06-10-2022 17:09
    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.


  • 17.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-06-2022 20:42
    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.


  • 18.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-15-2022 01:13
    @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. 


  • 19.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-18-2022 22:51
    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. 




  • 20.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-19-2022 21:27
    @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.
     <3 


  • 21.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-19-2022 22:33
    @hope2022

    Hi. I start my Caelyx (monthly) / Avastin (bi-weekly) treatment tomorrow (Day 1 = Caelyx + Avastin). I will keep this conversation updated as I move along the treatment path.

    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?




  • 22.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-20-2022 00:10
    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!



  • 23.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-20-2022 18:57
    @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.



  • 24.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-20-2022 19:49
    @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.


  • 25.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-20-2022 22:11
    @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? 


  • 26.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-21-2022 00:23
    @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.



  • 27.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-24-2022 04:53
    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!!!




  • 28.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-26-2022 15:50
    @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. 
    <3  


  • 29.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 12-26-2022 16:45
    Thank you @Fearless_Moderator


  • 30.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-02-2023 04:02
    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. 


  • 31.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-02-2023 21:44
    @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.


  • 32.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-03-2023 03:22
    @Strongwoman
    Thank you so much for your response. I guess we all experience some level of anxiety waiting for results. I know this a new regimen for me, so hopefully better results this time. I hope you managed to have a good holiday season. 


  • 33.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-04-2023 17:24
    @hope2022 I feel your anxiety.  Most of us go through it waiting for test results so you're not alone.  What I can say is that expecting a CA result after only one treatment  to indicate efficacy of the treatment is unrealistic.  Give it at least one full cycle and more likely 2 or even 3.  Wishing you good luck with your treatment. That combination is usually quite effective and hoping that's the case with you  : <3


  • 34.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-04-2023 18:12
    @Fearless_Moderator
    My doctor just called to say my CA 125 had dropped to 32 from 50 after the first treatment. I really wasn't sure what to expect now that I am platinum resistant. Very surprised and happy.
    Thank you for all of your inspiring posts. I love reading them and they give me such a lift! I know you are on a tough journey yourself, but so positive. 
    With the last 2 chemo regimens I feel like I waited for them to be over before I started making plans and really enjoying life. I'm not going to make that mistake this time around!!


  • 35.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-04-2023 18:15
    @hope2022 what a great way to start off the new year.  I"m doing the happy dance for you. 


  • 36.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-04-2023 19:03
    @hope2022
      I concur with @Fearless_Moderator.  That is such wonderful news to receive.  I am so happy for you.  As you stated and is a motto I currently live with, live every day with intent as one never know what is coming around the corner.  There will be up days and down days for sure but live in the moment of happiness you were blessed with today with your news!


  • 37.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-05-2023 01:40
    @Fearless_Moderator
    @Strongwoman
    Thank you both so much. I really appreciate your comments. 
    Cancer sure lets us know that we need to make every day count. I don't think I did this before diagnosis. Kind of a gift that comes along with this disease. 
    I hope to join in tomorrow morning. 


  • 38.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-05-2023 16:06
    @hope2022 you make a very good point.  Surprisingly, if you look for them, this disease has given us gifts we didn't expect.  I realized that after my first recurrence.  Like you, the ability to live in the moment for sure.  And I've become, I'm told, far more empathetic, and softer, and more tolerant in my relationships. Things other might not realize in me.....The sky is bluer when it's blue.  No matter what the clouds bring I can see people and pets in their shapes. And the snow,,,,,it sparkles of a zillion diamonds.  

    So glad to hear you may join us today.  Stongwoman will be hosting for me as I have to drive my son to the airport to return to his home in Calgary (sniff sniff) but it's been a lovely long visit for us.  I'll be back in full swing next week and hope you'll enjoy today enough to join us again.  

    Cheers and may your progress continue ......I made 13 cycles ( a little over a year) of the combination before it stopped working.  Many go much longer so I wish the same for you.   <3
     



  • 39.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-13-2023 12:25
    I have been on Taxol and Avastin for several months and my hair is growing back on my head!  (Not my eyebrows or lashes).  Worst side-effect for me have been battered fingernail beds like someone hit them with a hammer but the nurse told me to put a natural nail hardener on them to protect them and it's dulled the pain.  I have blurry vision on and off - weird belly pains on and off and some loose stools for 2 days after treatment.  I get Taxol weekly - low dose - which may be reducing the side-effects and Avastin every two weeks.  I don't sleep well after treatment for two days.  I am allergic to Taxol so I have to take dexamethazone at home before each treatment and I get Benedryl as part of my IV drip.  I find it okay overall.  My large tumors continue to shrink so I'll take it!


  • 40.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-13-2023 13:37
    @BellaDonna1959
    Sorry to hear you’re experiencing these side effects but it sounds like you’re soldiering on!! Not sure if this will help…but when I got my Caelyx infusion (I’ve only had one so far), the nurse wrapped my wrists and ankles with ice packs (very, very, cold, long-lasting and uncomfortable (frozen) by the end of the infusion!) to reduce the potential for “chemo nail.” I hadn’t heard of chemo nail!! However, I do not get the ice pack treatment with my Avastin infusions. I’ve read that this ice treatment may not prevent chemo nail but it could lessen it. Everyone is different and if this is something that is affecting you with the drugs you’re getting, it may be worth discussing and trying at your next infusion. 


  • 41.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-13-2023 15:22
    @GloHo  I have been icing lately - it prevents the neuropathy but not the nail bed damage for me.  


  • 42.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 01-13-2023 16:03
    @BellaDonna1959
    Well, just thought I'd put it out there. I'm glad it may be helping with your neuropathy and it sounds like you are managing your other side effects and/or know what to expect now so that it's not as stressful when these things happen. Sending good vibes your way!


  • 43.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 02-03-2023 15:46
    Well…it got me!! Hand foot syndrome and mouth sores!! The side effects came on full force following my second Caelyx infusion. 

    Difficult eating and drinking due to mouth sores. Salt water/baking soda was not helping, Dr prescribed magic mouthwash. My pharmacist had to call my private insurance to get them to cover it. I’m not sure why they wouldn’t given a couple of the ingredients require a prescription…in any case, the $92 cost was reduced to $13 out-of-pocket for me through insurance. The mouthwash provides some numbing relief, but not for a long period of time. I am hoping that this $100 mouthwash will, at the very least, speed up the healing process. In the meantime, my husband (the cook in our house) has been making meals that require minimal chewing (mince and taters, Mac and Cheese, soup, pudding, jello) and I have been drinking Boost to ensure I’m getting the nutrition I need. 

    My hands started with sore, tight fingers (not much on palms). Left hand has minimal discomfort but right hand has two fingers that are continuously swollen, tight, sore and a little discoloured. 

    My feet started with a little soreness on the sides of the heels but they are now very sore on the balls of my feet and full heels (pressure points). I’ve noticed that I have callouses where there is soreness. Very painful to walk. 

    I had been doing everything I could to ward off these side effects (keeping my hands and feet moisturized continuously, icing during infusion), but here I am, flat on my arse trying to find something…anything…to provide some relief. When my feet first started, they were very itchy and sore. I tried hydrocortisone (only on sore spots) and it did provide relief. However, my oncologist told me to stop. Back to the drawing board. Keeping my feet moisturized with 10% urea wasn’t working. Then my feet started to have a burning sensation. That led me to Solarcaine (contains lidocaine). This provided short-term relief, but I found the stickiness when it dried bothersome/irritating. Next…

    I find the pain and discomfort worse in the morning and evening. In the morning, I soak my hands and feet in very cold water. Then after cleaning and drying, I slather Bag Balm on my hands and feet. Some relief, plus it is moisturizing. I then take my temperature and, if no fever, take a Tylenol. So far, this has been the best combo for some extended relief. I keep slathering on Bag Balm during the day to maintain moisture. In the evening, I repeat the cool water, Bag Balm and Tylenol before bed. 

    My Avastin only treatment was delayed a week because Avastin affects the healing process. So they are hoping the delay will allow me to heal quicker. I also know that my Caelyx dose will be reduced due to these side effects and depending on how well I can get this under control, the Caelyx infusion may have to be delayed or stopped. I see my oncologist in a couple of weeks, so will see where we go from here. 

    I have been dealing with this for about a week and I have been trying everything to relieve the symptoms. There is no sign that it is going to let up soon, so I guess I have to let it run its course and hope that it clears up sooner rather than later. At this point, I would welcome a delay in Caelyx in order to get this under control. I’m sure the drugs are working because my physical cancer symptoms are gone. I hate the idea of delaying or stopping but, honestly, quality of life with these symptoms is severely deteriorated. I will know for sure how well these drugs are working  when I get my blood work in a couple of weeks. I also have a CT scheduled for the end of the month. 

    CAUTION: Always check with your health care team before you try anything!! I am so thankful for the nursing triage system at my oncology centre…just one phone call and I can speak to someone who can confirm that I am (or not) doing the right things. Unfortunately, there is nothing on the market specifically for HFS. Everyone reacts differently to treatment, not everyone will suffer these side effects, and everyone will find relief in a different way. 


  • 44.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 02-05-2023 14:41
    @GloHo
      Sorry to hear that you are dealing with all of that and that others do as well.  It seems like we all get caught into some sort of Catch 22 where you are damned if you do and damned if you don't.  We all work within a system of 'well, that side effect was not as bad as X so I can deal with it but not the other'. It seems so unfair in some ways and who would ever think we would bargain things like that in order to heal and get better. 
      Good to hear though and you must feel good about the physical symptoms of cancer are abating. With everything you are dealing with, how is that affecting you emotionally?  That is wonderful that your hubby can and does like cooking and has adjusted your meals accordingly.  Not everyone has someone that can do that but that is wonderful.  I am fortunate as well as my hubby used to work in a kitchen, my oldest son currently does and then I have other relatives that cook as well.  I consider myself very fortunate indeed.  
      Since it sounds like you are not able to move around much without pain, is there anything you are doing to help pass the time?
      I have started watching on CRAVE, Brenee Brown's Atlas of the Heart.  I do enjoy both listening, watching and reading anything she has to say.  It gives me so much food for thought at times.  
      Wishing you more healing vibes as the days go by......


  • 45.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 02-05-2023 22:08
    @Strongwoman
    Hi! Well…I am emotionally exhausted…my eyes were dropping some tears this morning. I didn’t even realize until I felt something rolling down my cheek! Mornings are the worst. Sore, swollen, tender hands and feet. Gotta pee first thing, so have to get up and move regardless of how painful it is. Once I get the soak and Bag Balm done, there is some relief. I’m not going to spend too much more time on potential scenarios re my treatment. Have to see how I’m feeling in a couple of weeks and what my blood work and CT reveal. Will make my decision when I have more info and talk to the Dr. I don’t believe in wasting time and energy on things until I have all info. I do believe in spending some time on what potential options might be and figure out how I feel about each one.

    Thanks for your TV suggestion. Sounds interesting. I’m so bored and tired I can’t seem to focus on anything. So, I do some fiction reading, usually with the TV on for white noise (unless something catches my eye).

    It has been fabulous to be able to share my issues and to hear back from others regarding their experiences and suggestions for symptom relief. So grateful.


  • 46.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 02-11-2023 12:46
    @GloHo
      Oh those darn tears that seem to come out of nowhere. What you are experiencing and the pain of it all would be exhausting as well. Are you able to elevate your feet at night either with pillows or do you have a mattress platform that allows you to adjust it at a touch or the button?  I assisted my elderly Aunt in finding one for herself and she now wonders how she did without it.
      It is good to delve into available options and then weigh in your mind how you feel about them and if you would consider them on or off the table plus so you can ask informed questions to the team when they are suggested.
      I know you aren't alone in the concentration part of things and many are at various stages with this. Either due to waning interest, physical ability to carry the activity out, fatigue or if you are like me, multiple projects throughout the house in various states of non completion. Some days, I can't get the spark to start any of it.
      My interest in watching anything on the TV wanes from interest to disinterest depending on the day.
      Take it one day at a time, let yourself feel and be in the moment and go with it. If you feel you are getting stuck on the emotional end of things, reach out to your team and let them know. They may have some suggestions for you.
      When you are ready to share tour updated results, let us know. Or if you need some support here, just reach out.
     Hope you find a ray of something to hold on to this weekend and maybe the sun will come out for us all. That would be nice.


  • 47.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 02-16-2023 18:09
    @Strongwoman
    Thank you for your support, suggestions and words of wisdom. They are always welcome!
    My side effects started to ease around Feb 6...thank goodness! I am now just dealing with peeling hands and feet from the blisters that formed following the side effects. The blisters themselves were not painful, but the loose skin over the blisters is a nuisance now. But at least I can now walk and use my hands. The magic mouthwash worked on my mouth sores...it took about a week. So feeling better now and my head has cleared up again. It was hard because one day I was feeling great, planning an overnight in Niagara (or somewhere) for my hubby and I and then the next day all the side effects showed up and I couldn't walk or use my hands. The side effects came on really quickly even though I had been doing everything right...lotions, ice, elevation, etc. So glad it's over. However, had a visit with my Dr on Tuesday. Caelyx has been delayed for a month pending healing of my hands and feet from the blisters. I will continue with Avastin every two weeks. The Dr. wanted to stop the Caelyx altogether, but the Nurse Practitioner argued on my behalf for a reduced dose instead. Overall feeling good, but a little down because my CA125 was up...not that I'm surprised. I did expect it because they did not do my CA125 immediately before I started this combo and I hadn't had any treatment for a few months, so I did anticipate this. But now I have to wait until my next appointment to see the CA125 with Avastin only and then two months to see if the cancer is responding to Caelyx + Avastin. Hate the waiting, but now that I am feeling better again, I hope to occupy myself with things around the house and maybe actually get away for a night before I get another Caelyx infusion!!


  • 48.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-06-2023 14:38
    @GloHo
      Thank you!  I am glad you are having a break from it as well as a reduced dose.  It is important to get major side effects under control before proceeding. They will return quickly if not.  If they do return and the side effects are uncomfortable, talk to your team about it, I am sure they can come up with an alternate plan for you.
      It is important to do things when you feel well no matter what they are. If it is important to you, do it.  I believe from reading other ladies posts with HGSC, that fluctuations in CA125 levels during treatment is common.  
      The waiting on the other hand is difficult and our minds can wander to places we don't want them to.  Find things to do or outlets that can help you through this process.  Spring is coming eventually and I, for one, can't wait for the spring flowers to start poking through the soil. It is a sense of regeneration and joy for me.  
      My palliative doctor and myself chatted this week and she chuckled when I told her that I find my CT scan results interesting and that I love seeing them.  That is the old practitioner side of me though. I find everything to do with the human body interesting and especially in seeing how far we have come with medicine to date.  
      Well, I am off to accomplish a few more things.  I hope to be on the Thursday chat this week.  
    Take care and be kind to yourself!


  • 49.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-06-2023 14:58
    @Strongwoman
    I see you're catching up! I am so glad you are back at it. ??

    I am now on BP meds and am self-monitoring with instructions to increase if there is no improvement in a week. This is a good distraction ??.

    Hope you're able to join on Thursday. 



  • 50.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 03-07-2023 17:06
    @GloHo
      Thank you. Welcome to the BP club. LOL  There are many of us on one for various reasons.
    It takes me a bit to process at times and some times, I can't pinpoint what it is I am attempting to process.  Sometimes if I 'sit' in it and stay quiet long enough it comes to me. 
      I am planning on joining in on Thursday and may do so from my bed. It is where I am right now and have a lovely view of the outside. The sun is glistening off of the snow, the birds are flitting around and the squirrels are busy doing whatever they do at this time of year.  Busy, busy, busy creatures they are! The house is blissfully quiet as no one is home and I like it just like that. Yesterday, my hubby came to have an afternoon nap with me and I was silently so thankful when he left. He was tossing and turning and not settled.  I think I slept better after he left the room.  I am finding I sleep better that way now.  I love him to pieces but don't enjoy the disturbance or movement would be a better word while I am napping.
      Sounds like you have a few things on the go for this week and will catch up on Thursday unless you post something sooner.
    Take care and be kind to yourself!


  • 51.  RE: Caelyx and Bevacizumab treatment for recurrence

    Posted 04-08-2023 17:46
    I just started Caelyx (doxorubicin pegylated liposomal) and Avastin (bevacizumab) on Thursday for recurrance after carbo/taxol was giving me serious reations after 2 treatments. So far, I feel better with the side affects  and  I do not need to take the dexamethasone or the akynzeo .. I am also on anxiety meds and I know it caused more problems for me. Citropram (celexa). 
    My question is , how many treatments are you on for Caelyx and Avastin? No one has told me yet. I know i go back on the 20 th to finish the first round and then see my oncologists before starting the second round.
    I am reading alot of positive feedback on this  chemo. i am trying to stay positive too. Thankyou. 


Log in or create an account to engage on OVdialogue.