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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).
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Comments
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To the ladies re follow up. I know it seems like not enough when you have been in treatment but that’s standard I think. I only see a regular gyn as there is no oncologist for it on the island. And you really don’t want too many scans as that exposes you to things You will feel cut adrift when you finish but it will get easier.0
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@Tinazzie, I share your concerns about follow up care. It sounds like we really have to advocate for ourselves - I would expect some pretty regular and close monitoring. @Fearless, I remember you mentioning in July about a project with Queens U to develop a framework for surveillance and support. Any updates on that?0
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I tend to agree about the scans, but just can’t figure out why the CA125 isn’t followed. It isn’t an expensive test. I feel it’s important to establish a trend so if there is a sudden change it will be obvious.0
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They seem to follow it more in the states. As you know it’s not always a reliable indicator. I need to check on having it done tho0
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Yes, gals..only to have maintained all that naivety. Some days I think I was emotionally far better off the less I knew. But I do feel some sense of security when I feel more in control and for me, knowledge allows for that. But whether you have side effects during or post chemo, just remember you've had months of toxicity flowing through your veins and our bodies, although react differently and at different times, what you're experiencing is somewhat expected. I can say, what you have is fixable. I just get frustrated that expectations aren't well managed at the end of treatment. For sure I was given the impression I'd just walk away and resume my old life in no time. NOT!0
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Hi @cbot! Glad you are making out alright with the Grastofil - and hope all goes well for round 5.
@BeamBlossom - you must be relieved to have all the chemo over with. Hopefully your blood count will start to improve soon and you'll start to feel better! I'm over in Nova Scotia.0 -
I feel a lot of anxiety mostly because my onc was so certain my blood counts would be back to normal, she didn’t even order a blood test to monitor them. That and the fact that they are actually getting worse not better as I move away from that last chemo, it is perplexing.On the upside, I was included in an intensive genetic study of 23 Known genetic Markers for various inherited cancers and I didn’t have any of them. This feels like good news for me and my family.0
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@Tinazzie, the Queens project is going slower than molasses. Academics don't operate with the same sense of urgency I did in the business world I'm afraid. So I'm just reviewing Phase 1 before publication..that's the synthesis of about 1600 surveys done over the last 10 years that inform our needs analysis. But what I can say is that the issue you all raise about post treatment follow up is high on every one of the surveys. Phase 2 will be development of a first cut of the framework and we'll be reaching out to get input from survivors. That was all scheduled to begin this fall but our timelines have been shifted out because of the pandemic. So one step at time but in the meantime, my counsel to everyone is to advocate for a regular cycle of check ups, each one with a CA 125, and to spend some time learning about symptoms and ensure your raise anything that might be suspicious. The combination of CA trending and possible symptoms are what flag the possible need for scan.
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This doesn’t work for those folks who had no symptoms.0
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@BeamBlossom the genetic results are something to celebrate. I wasn't as clear. No BRCA fortunately but I have two mutations of unknown impact. Actually it's been almost three years now so I should follow up with the genetic counselor to see if they've learned anything new about mine. Thanks for triggering a reminder.0
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Gals, you are all welcome to stay on and continue this chat. I need to exit unfortunately but regardless hope @BeamBlossom and @Tinazzie things are better for both of you soon. My favorite expression when it comes to anything to do with how I feel are: grin and bear it and this too shall pass. Fortunately that's always been an accurate reflection of my situation at any given point in treatment or recovery. Hope the same for you both. And hope to see you back with us next Thursday.0
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Bye everyone! Have a good week and good luck with those treatments!0
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Bye til next week beaming out good thoughts and hugs.0
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Till next week, everyone!0
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Happy Thursday August 27th and welcome to our special topic discussion today..RECURRENCE SYMPTOMS.
Many of you have expressed that your cancer snuck up on you...no clear symptoms seemed to be evident. Now, post treatment you're being told that part of maintenance is on you to monitor for symptoms but you're not clear what you should be looking for or what would be significant enough to warrant raising with your medical team.
So today, I thought it might be a useful discussion if those who have recurred could let us know what triggered your awareness that you might have a recurrence, beyond your CA scores. And for those who haven't recurred, any insights on what you're watching for.
This is not to say that if you have something off that topic to share or want to discuss it won't be entertained today. We welcome you to share whatever is on your mind....or to just stay silent and follow the discussion thread if that's what you prefer. We're just glad to have you with us.
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Hi @Fearless – hope you had a good week. I’m not sure if I can join the conversation later this afternoon, but hope you all have a good chat!
I completed my last round of chemo on Monday. As much as I was looking forward to ringing that bell loud and proud, I don't think I managed it! I was quite anxious and also ran into slight complications.
At the start of the session, I felt that that the site of the needle was quite painful. I was given a hot blanket to wrap around it saying it would settle. Then around 2.5 hours into my Taxol infusion, I noticed my left hand with the IV, was quite red and bumpy. It was thought to be an allergic reaction to the Taxol and the infusion was stopped and treated as such. The remaining dose of Taxol was discontinued. However, the same happened with the Carboplatin infusion and when the gyne doctor came by to examine it, it was thought to be a problem with the IV needle site and not an allergic reaction – given that this was my 6th round of taxol and that the red hive like spots were only on my left forearm and nowhere else – and breathing and other symptoms were fine. Soon after the needle was removed, the redness and swelling started to dissipate and decision was made to continue and complete the Carboplatin infusion in the right hand instead. Slight patchy swelling and redness remained in the left hand. 3 days later they still haven’t completely gone away and there are small bump-like areas that are a bit red and swollen. I just called this in to the nurses - just in case this is something I have to be concerned about.
I was quite disappointed that I wasn’t able to complete my dose of the Taxol infusion, but was assured that the 200 ml or so that was left in the last half hour of the infusion, would not impact my treatment in any way and that Carboplatin was the more important one, and that I received the full dose. Any thoughts?
PS. I just noticed today's special topic on Recurrences which I think is great. Will look forward to catching up on the discussion later. Thanks!0 -
@Tinazzie
I was also told it is the Carbo that does the heavy lifting in killing the cancer. My taxol dosage was reduced by 25% for my last 3 infusions.0 -
@tinazzie Sorry to hear you can't be with us but glad you'll follow the stream later. And sorry about your reaction to the last chemo. Strangely you mirror a bit of my experience so hopefully this is helpful. First of all I didn't get to ring the bell either, sniff sniff. That was a big disappointment as the last chemo I was to have got cancelled. It turned out, like you, I had had all my Carboplatin and the only thing left was a dose of Gemcitebine which they said really wasn't necessary...yes,
I too was assured it was the carboplatin that was the critical component. So we passed on that final infusion. As for your IV site sensitivity, I am very very prone to exactly that reaction when an IV is left in for a period of time. Hence I'd never have a PIK line installed. But always found once it was removed it would heal over a few days to a week. Just keep your medical team informed if it doesn't continue to improve or shows any signs of infection setting in. For me they used to mark the area of inflammation and then I'd watch to see if the redness reduced or started to overlap the mark.
But congratulations on finishing your chemo gal ! We'll all do a happy dance for you today !!!0 -
Hey @BeamBlossom Good to "see" you today. How are you feeling? Any improvement in post chemo side effects?0
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I’m not really sure, seems I’m better so long as I get about 10hrs sleep, if not all at night, then a nap will be needed. I’m hoping my blood work next week shows improvement in my counts.0
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I'm currently on maintenance and would be very interested in hearing from anyone with insight into recurrence. My ca125 isn't a good marker for me as it never got into the normal range.0
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Hopefully we'll have a few others join in today. But in the absence of just the two of us, assuming tinazzie has left now, perhaps I can talk to symptoms leading up to my recurrence.
Like most, I had nothing specific leading up to my diagnosis. Although in retrospect the warning signs were there. But so mild they could have been caused by anything and OVC was the last thing on any one's mind. It was a respiratory issue that prompted the CT that disclosed my OVC.
But for recurrence, I had educated myself on the subject so more attuned to what was going on in my body that might be worrisome. For me, it was a sudden and persistent onset of mild bowel issues starting in August. I raised it but there was a feeling that I had been overprescribed Metonia for some mild nausea and that might be having impact on my bowel function. So we did a CA125 (my insistence) and then weaned me off the Metonia over a 4 week period. My CA was mildly elevated at that time. Scheduled a six week follow up at which point the bowel issue was still there. Still mild though but my CA had doubled. The combination of the two was enough to warrant a CT and the rest is history. Two new tumors..but because we began investigation fairly quickly they were very small. From that came the treatment plan which, for me, ended up being the Olaparib Lite trial.0 -
Hello everyone, and congratulations to you @Tinazzie, on your final treatment. I am still waiting for round number 4, scheduled for Sept. 3. I finished the self injection of Grastofil (10 days), so we will see if it did the trick. I won't find out until I do my blood work next week. I am still in the middle of my first line chemo cycle, but would be interested in any info on what to watch for re: recurrence.0
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Hi @Readersmaven Glad to have you with us today. @beamblossom, hoping you see improvement in you blood work and if not I would expect that might give rise to some intervention that should bring your counts back up and I expect an improvement in your energy. Keeping my fingers crossed for you.0
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@Fearless thanks for sharing, I feel like the biggest challenge with this disease is that no two people have the same response and sho it's very challenging...just like with initial diagnosis.0
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@cbot hi and glad you're with us today as well. Keeping my fingers crossed for you also re your blood work and the ok to resume your chemo. How did you find the Gastrofil? Any side effects while taking it? It's a new one that I'm not familiar with...in my day (all three years ago) it was Neutrofil injections they used to up the white count. Most generally experienced some muscle aches, but fairly easily managed with an antihistamine and tylenol.0
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Hi @Fearless. The Grastofil was tolerable. It wasn't so much bone pain, which I hard been warned about - it was more of a general achy feeling; kind of like the flu. The first 3 or 4 days were the worst but that also coincided with the first 3 or 4 days post chemo so it was hard to sort out. I took Claritin and Tylenol and I managed ok.0
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thanks Fearless, my onc is aware of the blood results but I have not yet heard a response from her about it.0
