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).

How long are you/did you take Taxol AKA Paclitaxel for metastatic ovarian cancer?

Options

Hello

Quick question:? How long have you/were you on Taxol? My doc says my 2 years of treatment is 'a lot' and maybe we should look at discontinuing it after we see my scan results. I was shocked because up to now he and also Dr. Osa at PMH (trials doc) both have said, "We keep doing it until it isn't working." I was shocked. Currently I use Taxol 3 x a month and add Avastin every 2 weeks. I have been mentioning side effects frequently lately (weight gain from steriods and Pregabalin), Neuropathy. How long were you prescibed Taxol. I will look in the Treatments section also but if any of you have experience with Taxol and can give me a quick answer that would be great. They work on different principals so I would be very relectant to stop one of them. I was upset after my appointment. He wasn't pushing his POV too much - but I'm in it for the long haul to have as much time with my family as I can and he KNOWS this. I can cope with the side-effects just trying to find a way to cope best with them.

Comments

  • Strongwoman
    Strongwoman Moderator
    Options

    @BellaDonna1959 It sounds like you are quite upset with what you heard. Did your team offer at the time and mention that you would discuss things further after the scan? Wondering if perhaps that although they have mentioned stopping it that they may have in mind an alternative that works as well or obtains similar results. Sometimes we do receive info that to us is "shocking" at the moment but when we have had time to really digest the info it does not seem as bad later. Time has a way of putting perspectives on things for us. I will use myself as an example, after my appt last month, I was fairly shell shocked but as I had time to process it, I have come to peace with it all. Not news I want to accept but the evidence etc is there. My body is telling me as well. It does not make it any less painful when I tell the ones I love either. It is in how I present it to them that will give them the way to carry on with the news and life as we navigate this last part of my journey. Please give yourself time to process your shocking news. I am sure the ladies will weigh in as they can on Taxol use etc BUT remember every one is an individual and although our journeys can be similar they are not the exact same. Your team will do what is best for you and your case, in the meantime, do your best to not go down the rabbit hole of info that can be out there. Be patient with yourself and as always, we are here, when you need us. Please be kind to YOU!!! 🤗

  • melissa
    Options

    @BellaDonna1959 I was only on Paclitaxel for my original front line 6 rounds so I can't say much about it other than my side effects were mild with the exception of joint pain. I can only imagine how that might have made you feel being told the possibility of stopping the drug. Two years does seem long and part of me wonders if the doctors are concerned about damaging your bone marrow to dangerous levels with the prolonged administration of the chemo. That being said, have you asked if they plan on offering you an alternative treatment? When you have your scan and if it shows that the taxol is working then, if that is what you want maybe they can be convinced to keep you on it? Maybe administered a different way, or lower dose to help protect bone marrow.

    Have you dipped into the research? Have you found any studies that say long term taxol is " safe" and effective

  • Strongwoman
    Strongwoman Moderator
    Options

    Good Morning @BellaDonna1959 Our friend @melissa has brought forth some good points in her post. Did they indicate why they want you to stop with an explanation like brought up above "wonders if the doctors are concerned about damaging your bone marrow to dangerous levels with the prolonged administration of the chemo." Did that come up at all? If not, maybe save it for your next appt and put on on your list of questions to ask. Another one would be what alternative chemo drugs are they thinking of replacing it with, why, efficacy, side effects etc?

    I have found a couple of articles around Taxol and provided the links below for you. They may or may not help but may give you some food for thought to pose questions at your next appt. I hope they help you:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7767101/

    https://www.nature.com/articles/s41571-023-00776-9

    https://www.ncbi.nlm.nih.gov/books/NBK589655/

    Here the articles are. I searched and found what I thought might be current, relevant and possibly give options to alternatives. Most of them also have the reasoning why the toxicity can occur, where/why and ways to combat it. This should give you at the very least talking points going into your next appt. I wish you all the best with this and that you and your team come up with a new protocol for you that is safe and effective.

    Take care 🤗

  • Thanks for the articles. He only said, "We could continue with the Avastin alone" which wasn't the agreed protocol of 'We do this until it doesn't work anymore then we try another drug.' So I was very surprised and upset because it sounded like he wanted to remove one of the drugs and not add anything else, even though the combo was keeping me stable and I still have a lot of cancer in my abdominal cavity plus a CA 125 that has never been below 68. I don't know what was going through his head, but I left feeling like he didn't know me and that he was suggesting a change that could hurt me without much being offered instead plus I was asking to manage my side-effects better, not give up and discontinue. Just an odd and disturbing 15 mins appointment - how could I begin to cover all the bases and I was taken by surprise. My blood counts are always pretty excellent so no effects there - just the tingling and numbness and the shortness of breath, weight-gain from dexamethasone and some edema. I'm managing the leg pain very well with Claritin thank goodness. Hopefully my next appointment with him will be more positive. I will fight for my right to continue as planned until 'it stops working'. Thanks for the info - very interesting.

  • Strongwoman
    Strongwoman Moderator
    Options

    Okay @BellaDonna1959 It sounds like you were trying to have a conversation at the moment but that it wasn't going well for whatever the reason(s) were. That happens sometimes esp with info we are caught "off guard" with. So, to start I think you have 2 things/topics you want to discuss at your next appt. You mentioned that you were speaking to them about side effects and how to manage of them…….to which drug specifically is this an issue for you? One or both of them? I would identify them singly and speak to them about each at your next meeting. If they are wanting to keep you on he Avastin solely, you could ask why specifically they are suggesting that. Is there not another combo that they could do instead and the efficacy rate and longevity of staying on either of them. If you CA 125 level is remaining at a "stable" rate and not shifting either way, I would say that is a good thing. It is not below what they would want to see it at to be NED but stable is good compared to trends up or down as you are being tested. You could ask as @melissa suggested about having the other drug at a reduced rate and see what is said about that. I am positive there are outcomes that perhaps the team has in mind for you as well. Remember to listen to why they are telling you they want to stop. Sometimes the risks outweigh the benefits and is why they ask to cease something.

    We can often at times feel like they "aren't hearing us" and that "they don't understand what we are going through" based on the info that comes out of their mouths. Some physicians are very clinical so the info that comes out is clinical and cold in the delivery, kind of just like facts. Then there are physicians that are empathetic to the patient that will allow for some of that empathy to come through with the delivery of what they need to tell you. Determining which one you have may help you when you enter your appt because you will know where the info is coming from and perhaps be able to be the same way back. For example, Mr, Clinical speaks, well speak back clinically like you are talking about a patient that isn't you but it is you in reality. Kind of like a detachment. Ask the questions as to why this treatment, is it the only treatment on the table, what other options are out there either now or later, what would they do if it were their partner, side effects, long term use of, if it doesn't work, what else is on the table. So basically pros/cons of whatever they are suggesting. If you get Mr. Empathetic, well you have a little more leaway with them and can ask questions like how it will affect you, affect the cancer directly, what they hope to see, side effects vs benefits, how this will affect you mentally/emotionally. For both I would be asking them where they want to see whatever the treatment is, head into. Are they expecting it to keep you stable, see a change that will trend upward or downward? What is their hope and vision for you?

    So lots to think about. I would also look at any and every clinical trial you feel you may be eligible for and talk to them about it. Don't worry about specifics, have your list ready and let them tell you if you would or would not qualify and why? Get them thinking that you are willing to try other things should they arise. You never know what will happen. When I went to my appt at PMH inquiring about clinical trial, that is how I ended up chasing down a possible change in meds, revisiting whether surgery could be done again, possible chemo therapy again. All from not being eligible for a trial and someone who cared enough to make suggestions for my main team to follow through with. My team had nothing left to suggest so for me, it was a positive and surprising visit. I came out more hope-full than before. Unfortunately for me, none of that worked out, but I was able to explore it to figure that out which is something. So, as you have time to process do some homework and go in there prepared. Let them speak first then ask all your questions, make sure you get them answered and although some can bring about emotions, try to keep them in check to get through your list and then process afterwards. I know you can do this and you are able to. One day at a time, start looking through info, get prepared and have the best possible visit you can after your scan comes back. There are answers and you will get them. Listen with an open mind and try to keep emotions aside for the time and then process it all in the days after. It can be overwhelming and I know you have some anxiety about getting to and from appts which adds to this. Being as prepared as you can be, should help to minimize a part of it for you. Be kind but make sure you get your questions answered as well.

    I hope this provides you with more hope and direction as to how to approach your next appt. I truly wish you the best at it and hope you keep us in the loop.

    Take care of you in the meantime. 💕

  • Thanks. I definitely have Mr. Clinical at Credit Valley Hospital - no emotion really. My doc at PMH (Dr. Osa) who did my Bio Diva study to identify mutations also told me to 'stick with what is working' many months ago and again recently when I asked him about Elahere - a new drug for platinum resistant cancer. He told me that folate receptor alpha testing (required to get Elahere) was only available through a study, which he is currently doing, but not in general, in Canada right now and again said to stick with the current treatment plan. Dr. Osa is more of a warm, feeling doc and I prefer him. If my CVH doc insists on removing Taxol, I will reach out to Dr. Osa for a consultation for sure. He is hard to get hold of unless you are in one of his studies. I was surprised when he answered my email to be honest.

  • Strongwoman
    Strongwoman Moderator
    Options

    Sounds like a plan @BellaDonna1959 Why not contact him now before your appt and see what he has to say. Can you get involved in that study, what would you need to be involved in it. If not that one, is there another one? Can't hurt to ask before then you can go prepared into your meeting with your other physician and be steering the boat so to speak. Worth a think over. Best of luck!