Good morning/ evening, depending where you are in the world.
After 2 cycles of chemo and de bulking surgery, I was put on zejula in January, just had scan and it’s not working, so been taken off it.
I’ve now been given the option to go to London to see what clinical trials I could try or have more chemo. I decided to do more chemo and leave the trials till I’ve exhausted all other options.
But I’ve been told not to have the chemo yet and there is evidence that you will get the same results if I was to have it now, or leave it till such time that more symptoms present themselves. That sounds weird to me and worries me that it could spread to other organs, at the moment it’s just in lymph nodes in the chest.
Only reason I can see for waiting is to give my body a rest, though so far I’ve been fine on all treatments and feel fit and healthy.
Anyone had the same told to them, any thought would be appreciated 👍
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Elfed
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Hi Elfed, I have had 2 recurrences and each time started chemo within a week. I was told the same that I could wait for symptoms to occur (never had a symptom) but luckily have a consultant who agrees that for me waiting is not an option as I dont think I could cope with knowing the disease could spread elsewhere and poss not be beaten back. I think it depends on whether to can wait in terms of your emotional well being. Im considered to be a strong individual but being so means for me I have to deal with any problems head on, not just my cancer but anything. Hope that all makes sense lol. I wish you nothing but the very best in what ever you decide. Kathy xx
Thank you for your reply, I like you, am a very strong person and I like to feel I’m doing something positive, not just waiting and every twinge being a concern. But do worry it could be an overload as all my treatment so far is in less than 2 years
Hi Elfed, yes maybe it is time for a break, especially if your consultant says the impact of treatment will be the same. xx Kathy xx
Hi, I've been on watch and wait a couple of times when I haven't had any symptoms. I like periods out of the medical system and living a "normal" life. As Katmal says it all depends on how you as an individual deal with it and finding the right balance for you between quality and quantity of life. My oncologist was quite clear that the research doesn't show any greater longevity from starting chemo immediately something shows on a scan. Many of us are in a phase of chronic disease management, there is not a cure, so there are many choices that can be made along the way. I wish you good luck with your decision - it will be the right one for you and your family.
Hi Elfred yes I had this advice (to wait until symptomatic) from research team at Addenbrookes. It is best practice as gaps between treatments are beneficial and there is no evidence that waiting makes chemo less effective. Feels counterintuitive doesn’t it? Enjoy your time off! xx
It feels completely wrong to wait when you know something is growing inside, but I guess you don’t want to use all your options up too quickly
My Oncologist also prefers the watch and wait approach which although hard, I am enjoying just over 4 months of no treatment, my last ca125 was 102 but even after chemo and debulking it was only ever down to 38 so not sure if it is a good indicator for me as my CTscans are still all clear and I have no symptoms. My next checkup is in June but instead of worrying we have booked a cruise, even managing to forget some days that I have cancer. My husband recently retired so we are able to go out during the week and have some fun, yesterday it was to the cinema to see Dumbo, I do love a disney movie and the elephant is soooooo cute! I realise the watch and wait game is hard but please do be guided by your oncologist, mine says "I see a lot of people" I know what is best for you. I trust her! She says the longer you leave between chemo the better. I read this on watch and wait on a cancer website and it helped me to decide.
It lengthens the time period between platinum-based chemotherapy treatments, which may help the response to the drug, and reduce the chances of developing resistance to it.
It may improve your quality of life, because over the course of time if there are a number of recurrences, there would be less time spent having treatment and dealing with the side effects.
Research has shown that starting chemotherapy when a woman's CA125 level starts rising (but before there are any symptoms) does not have an affect on the success of treatment.
Good luck with whatever you decide is right for you xx
Thanks you for your reply and very good luck for the future. I think I’d be happier if there was nothing showing but these lymph nodes have grown a bit since November scan, so I can’t see they will stop without treatment. But like you, I don’t worry about it, just want to make sure I’m making the right decision. I’m just about to book to go see my daughter in Canada, I’ve got 4 grandchildren there and I haven’t seen one of them. To be honest in the last 2 years since diagnosed, I’ve had the best 2 years of my life, hubby and I gave up work got a motorhome and only really been home for treatments then off holidaying again each time, shame the cancer gets in the way 🤨.
I am not a fan of “watch and wait”, especially if the cancer is creeping into your lymph system.
Like Kathy, of Katmal-UK, my Oncologist agreed that treating quickly at recurrence, even without symptoms, was the best route for me, keeping the cancer contained to my peritoneum, and not letting it grow or invade bowels or organs or lymph nodes.
Carbo/Caelyx was my successful second line treatment, and it was both effective and easy to tolerate: one bad week and three good weeks each month.
I am BRCA 1 positive, so that makes things different, I know, but I still urge you to go ahead with treatment.
Hi Elfed. I think we are all different. I did 'wait and watch' for 7 months after 10 months of remission after 1st chemo. I try to weigh up balancing not letting the cancer spread with looking after my immune system, with not getting resistant to carbo platinum and quality of life. My Onc say's they wait for symptoms and I am v clear that I had/have very few symptoms and my CA125 is v reliable. But they don't hear me!
I am now balancing this all again 5 months after my 2nd chemo. My medical team seem not to be concerned if it spreads but I will start chemo as soon as that looks like its happening. Otherwise I am happy to have more time off, hopefully another 3 months, if I'm lucky.
So talk it through with the medical's, family, friends, us etc and do what feels right for you, knowing the pro's and cons of both options. Big hugs from the English gal in Australia.
Hi again. I found a wonderful oncologist who sends me for a pet/catscan every 3 months if my cancer marker is rising. But he is rare! Pet/catscans are really early warning signals unlike Catscans. I would be told at present on a Catscan that I was clear as my understanding is, it doesn't show anything under 1 cm. But I like to know what is actually happening in my body and don't jump into treatment until things start to look dangerous. My other oncologist at the chemo clinic wouldn't send me for a free scan 6 weeks after finishing my 2nd chemo.
By the way, also I would do a Phase 3 clinical trial if eligible so I could access certain drugs that are very expensive here until after 3rd recurrence! I think in UK they are available for free earlier. I feel Phase 3 trials are quite safe and possibly Phase 2 and we can withdraw anyway at any time if side effects are bad. Hugs from Oz.
Whatever you decide I thoroughly recommend going to London for clinical trials as I have been doing this for 15 months now. My situation is different as I am platinum refactory but I have to say that the trial drug has been easier to tolerate than the frontline chemo.
Clinical trials have always worried me. I used to be a buyer for a wholesale drug company many years ago and remember so many tablets would come out as a wonder drug, only to be recalled a few months later.
Hi Elfed, it is my understanding that the lymph nodes is a way for the cells to spread to other part of the body. If it were me, I would start on treatment right away.
I agree with the 🤷♀️. I am in the U.S. Had my debulking surgery in December, rough recovering but my surgeon recommended chemo right away. She indicated an optimal window after surgery was within 6-8 weeks. After chemo is completed I will have 28 days of radiation. This due to also having uterine cancer along with the OC. The more I read the more confusing it seems to get with regards to best treatment plan. But like you I feel best to go along with the recommendations of my oncologist and surgeon. But I do feel a second opinion is always beneficial.
Hi Elfed. I would like to add a thought re clinical trials. It is my understanding that the more lines of treatment you have makes it more likely that you will not be eligible for the trials. I am currently on carbo/caelyx second line for recurrence and plan is weekly taxol/trials if unsuccessful. I have already decided that i will see the trials team for assessment before taxol to avoid being made ineligible by too many treatments. I just thought it might be worth considering especially if you take the watch and wait option. It wouldn't do any harm to be assessed by trials team prior to starting the chemotherapy. Best wishes Jane
I’ve not heard of that being the case 🤨. I’ve always thought I would prefer to use proven treatments than ones they don’t know much about and keep them as a last resort. I’ll have to ask my oncologist a few questions about it
Could you please let me know what your oncologist says about this Elled? My friend who who is a staff nurse works at the Christie on the trials and it was he who told me this only last week. We use to work together at a different hospital and i have alot of respect for him professionally and i am quite sure what he tells me is correct. Also I completely agree with you on the tried and tested treatment 100% but i just think no harm can be done knowing what is available to try if your on a watch and wait period. I would be very greatful if you could let me know what your oncologist has to say on the subject. Best wishes Jane x
I stayed on 'watch and wait' for over a year after my first recurrence was diagnosed. It meant I had all that time to live a normal life without treatment and constant hospital visits, which I hate.
The cancer in my lymph nodes continued to grow very slowly, but hasn't spread to any organs.
I have been very grateful for that time without treatment and I don't regret the decision. It has given me time to recover from first line treatment and to understand more about how my own cancer behaves, which will help with future decisions.
Can't remember the size but they grew by 50% of their initail size in a year. We decided to start chemo because I began to get symptoms-specifically lymphoedema in my left leg.
Waiting really isn't an option especially since they're in your lymph nodes. I wouldn't wait myself, but it's always up to the patient. Good luck with your decision. So sorry the zejula isnt helping you. Perhaps there are other parp inhibitors that will target the cancer.
I was told the exact thing. I am in the US. My doc thinks it’s better for me to be stronger and let more time go between rounds of chemo. More time for me to get strong and also have a life.
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No more Carbo for me, what next?
what will be next?
Unsure what to do next
First post here and terrified, What happens next.
