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 (mfallis@ovariancanada.org).
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 (mfallis@ovariancanada.org).
Caelyx and Bevacizumab treatment for recurrence
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Comments
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@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.0 -
@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 :
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@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!!0 -
@hope2022 what a great way to start off the new year. I"m doing the happy dance for you.0
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@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!1 -
@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.0 -
@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.
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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!0
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@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.0 -
@GloHo I have been icing lately - it prevents the neuropathy but not the nail bed damage for me.0
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@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!1 -
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.0 -
@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......0 -
@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.0 -
@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.0 -
@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!!0 -
@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!0 -
@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.
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@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!0 -
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.0
