I don't know if I have a question per se. I've taken myself off all chemotherapy. I'm not a hundred percent sure I will stay off of it. I am well aware that without this very strong chemotherapy I've been on for 2 years, for over 2 years, the cancer could increase. But, the side effects to the treatment have never quite resolved themselves. Unlike what I was hoping, the pain and nausea and exhaustion and muscle cramping or actually increasing. I decided that I wasn't willing to trade this much pain and discomfort for what was left with my life just too extend it out longer.
I'm really not sure what to expect when treatment stops. I just know that I feel confident but advancing stages of cancer might be painful but trying to do it along with the pain from the chemo wasn't something I was willing to do.
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It sounds as if you are acting in your best interests, maybe you need a break or maybe you will not go back to it but only you know what feels right for you. I hope you feel a bit better in yourself once it stops! xx
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The muscle cramping sounds like low magnesium which is very common after chemo. I have to have weekly magnesium infusions. Have you looked into clinical trials for targeted therapies- these can be much easier to tolerate than chemo as they target only the cancer cells.
I agree with the other Ladies try to get some different treatment and maybe ask for a 2nd opinion about your treatment. All the best and take care. Sue xx
Hi. I took the same decision last November. Brief history: first diagnosed 2008 then following hysterectomy and chemo was NED for eight years. 2016, huge shock when it recurred. Since then rounds of different chemo combinations with ever shorter periods of respite. Last year took a heavy toll with my body struggling to cope with the chemo. I was hospitalised on five different occasions for periods of a week or more with infections or low bloods or both and basically didn’t have a normal life for eight months. All along, it has been the effects of treatment that have made me really poorly, not so far OC. My plan was to be able to spend quality time with my family, travel if I could, generally live life to the fullest before the disease caused me serious problems. Obviously Covid has been a huge barrier to those plans. I chose not to have blood tests or a scan until symptoms appeared. I’m now awaiting a scan for symptoms that could be OC related. I don’t think whatever happens I’ll have more chemo. But the door isn’t closed. We are all different but I thought my experience may help you think about your future. All the very best, whatever you decide in the short or long term. Jo 🌺🌼🌸🌻🌹
Hi Jo. It’s good to see that your decision has worked out so far. But it’s too bad about Covid spoiling your plans (and mine and everyone’s). I am very interested in people who stop treatment. Right now I’m doing well on a PARP but I’ve been told I will be on treatment forever. So thanks for posting this.
Thank you. Thank you for the support. This is the third attempt at treatment. I never responded to any first line chemotherapy. They put me on a trial drug opdivo which did not work. I got a second and third opinion. At that point, all the opinions agreed with my doctor, opdivo was the next drug they would try me on and after that they suggested trial drugs.
I'm very thankful I did not attempt either of the two trial drugs available at the time. They ended up stopping one of them because it was very damaging to women's livers and kidneys. And the other one has proven to be effective only for a short time but has left some pretty severe impacts on the patients organs.
At that time, rather than the trial drug I went with avastin. It definitely medicated my tumor growth. In fact a couple of tumors completely disappeared. Since then my ca-125 is have just steadily but very slowly increased. So it keeps the drug from really growing but has really impacted the quality of my life.
I am definitely a bit jaded about attempting any new treatments at this time. My body is so beat up. In the last couple months, it's been very difficult to control the pain even with more drugs. My energy level has reduced so much that I cannot fix my own food now. Bless my family's heart, they're taking shifts 2 stay with me until one way or another I don't need them anymore.
I am hoping and praying that six months of letting some of this crap leave my system will give my body a chance to heal. The plural desus surgery I had in February has not completely healed.
So I guess it's entirely possible I'll be far more interested in some hopeful looking treatments once I can he'll from some of the damage of this one. I think the clincher was when I started dropping weight at 2 lb a week and couldn't seem to put it back on.
I’m Sorry you’re going through such a hard time, thank goodness your family are there to support you. I don’t know how I’d have coped with the past four years without my family helping and putting up with my emotions cos it’s damned hard to go through all this. I’m glad too you’ve found support and encouragement from this group. All our experiences are different from one another but there are also many similarities which can resonate with our own particular circumstances. I think our bodies need time to heal after aggressive treatment. All the very best Jo 🌼🌺🌼🌸🌻🌹
It sounds like it’s a brave but necessary decision. You’re the only one who knows how you’re feeling and what you’re able for. Trusting your instincts is important too.
There comes a point where the quality of life left (short or otherwise) is more important than the length of it, I think for all of us. Certainly, for me, after my debulking in January 2018, I refused adjuvant chemo and had two years of more or less normal life instead, a decision which, far from regretting, I shall be eternally grateful for making, though I've had chemo this year, starting at lockdown, because other palliative treatments such as ascites draining were stopped for a while, just at the point where I started to need it.
Some of us carry on with treatments until we're told there's no more possible, for whatever reason; others decide to stop sooner than that, which I'm guessing is probably dependent on how badly one is coping with treatments. I've been offered rucaparib, and I'm not keen, because I can see my quality of life will be negatively affected - I might try it for a while, but I'm tempted to finish the chemo (just had the 5th, or maybe even stop chemo now and miss the sixth) and take whatever time I get being free of medical treatment instead. At the very least, the idea of having to continue to self isolate for another 3 months because of rucaparib is abhorrent to me, I'm pretty sick of being stuck indoors all the time on my own because of chemo, never mind adding another 3 months to that time, though it does sound as though the amount of fatigue from the drug probably means I'll have no energy to do anything anyway. I can't see the point of taking the drug if all I can do is just carry on breathing with some extra indeterminate period of time in which to do so, and then be offered more chemo. We're all between a rock and a hard place, aren't we, and the presence of Covid doesn't help. I think you're right to give yourself a break, even if you take up more treatment a bit later ... good luck, and take care.
Hi Miriam. I sympathize with your views on drug free quality of life but wanted to say I’m on Olaparib and it’s not that bad. I did have mild nausea for the first month but took one anti nausea pill in the morning and was fine. The fatigue is not like chemo fatigue. I get sleepy and take a nap. Otherwise I feel good and am walking four miles a day. Just my experience.
Thanks for that - I imagine rucaparib is similar, though its a different drug. I might try it because we all react differently to medication, don't we, but its the thought of more isolation that's really putting me off, well, that and the real stumbling block of not being able to take erythromycin, an antibiotic, while on it, and since I've trouble with 6 teeth and infections due to chemo, I can't start the rucaparib anyway till I get extractions done. Which seems impossible currently, dentists are still not operating anywhere normally, only doing xrays and dishing out pills, and the labs that make dental plates are all closed too.... bit of a conundrum, that... shame I'm allergic to the other antibiotics they could use instead. Plus there's a preferred six week window for starting rucaparib after chemo - I can't see how that can be managed, cos you have to wait 6 weeks after finishing chemo to get that sort of dental treatment anyway. Ho hum, nothing's easy, is it...
Got a question for you - do you find you're constipated or have diarrhea on the drug? The Professor of Oncology told me I'd get diarrhoea, but the chemo nurse (who's also an expert in PARPS) told me no, its constipation?
Hi. You do have a dilemma! The teeth thing is a nightmare! I was constipated while taking odensatron for nausea but now I have occasional diarrhea but I take magnesium every day too. The diarrhea has only been bad twice in six weeks and I think it was caused by an overload of raw vegetables.
That's the other thing - I eat mostly vegan when not on chemo, so lots of pulses, beans, nuts and veg, and that includes a daily raw veg leafy smoothie, though I've included a little meat and fish while on chemo; so I also recognise that diet changes might be necessary that I'm not thrilled about because it will be less generally healthy. There's a reason why my magnesium and other electrolytes have remained reasonable during chemo - diet, as well as my usual magnesium/calcium supplement, the chemo nurse actually commented I must have a good diet, without asking what I ate though. They've told me I will have to take domperidone 3 times a day all the time I'm on the drug, not odensatron, which does makes me constipated too. Not thrilled about that either... but if the tooth difficulty can be overcome, I probably will try it, if I can face the necessary isolation. Not sure I can, to be honest, I'm bad enough on the depression front as winter approaches in normal times anyway... life has to be worth living in some way, otherwise, what's the point, stuck inside, with no social contact, more or less up to Christmas. Gotta get the balance right between becoming suicidal whilst trying to live longer... not an easy decision to make, I'm finding, especially as the drug might only give me an average 5 months longer anyway. Pain in the proverbial, this disease...
The isolation is just another choice isn’t it ? It’s only advice , we don’t have to. Whilst being very careful I have not adhered entirely to the rules and this W/e have gone away for a one night hotel break with some golf thrown in . Now it may be that I shall pay the price but I do not feel that to live in isolation when your days are numbered makes sense ?? Carpe diem ?
Anyway just a viewpoint , I hope you are well and teeth problem gets solved. I’m on olaparib btw
Of course you're right - once you've been on the drug a little while. After chemo, I don't see my son for the following two weeks (I feel rough and/or sleep most of it anyway) and then I might see him during the third week, as my immune system starts to recover a bit and I feel more human, and knowing, as I've not been anywhere, I can't pass Covid onto him. With rucaparib, I certainly won't be isolating for 3 months solid, regardless, provided I can function okay - but I want my sister to come and stay the weekend like she used to, and it seems she's more afraid than I am of me getting Covid, never mind getting it herself! I've been sanguine about getting Covid (for obvious reasons, big deal, at this stage in my life) though I take precautions because I don't want to pass it on to anyone else... from the Covid point of view, from late September throughout winter is the most risky though, because we're all shut inside most of the time without doors and windows open, and I am aware that other loved ones are anxious about not giving it to me...
Believe it or not, I miss being able to go in the sun as much as seeing people right now, I love being outdoors - the carboplatin has affected my skin, which is now a bit sore, peeling all the time and fragile, worst on my arms. Since I usually do a lot of gardening and see a lot of people while I do that, as well as catching some sun to top up my vitamin D, its a real drag, and I note there are warnings about sun exposure on rucaparib. My arms are currently covered in livid red marks, the slightest brush against something and that's what happens.. and I watch the summer whizzing by, keeping out of the sun or wearing thick, long sleeves, honestly, what a waste of my favourite time of year, its infuriating😭🙂 Still, the truth is, without the chemo, I'd likely be well on my way out if not gone already by now anyway, so I can't really complain...
I went to the garden centre (masked) the day before my third chemo, just after they re-opened - I needed bedding plants, wasn't going without those this year, and had my son over for dinner last weekend, indoors, again with sensible precautions, I'd hate to risk giving it to him...he's no longer a lad! He made sure every door and window was wide open while he was here, but at this time of year, that's obviously not a problem. I suppose its largely down to how well I feel on rucaparib whether I do much or not... and I won't know that until I try it. And if everyone else can get over the fear of infecting me... I need to get my teeth sorted!
Hi Miriam, I’m on Olaparip for over a year. I’ve been very lucky and had very few side effects, especially now. It’s impossible to know how you will cope with it until you try it.
Thanks for that, I know you're right, I won't know unless I try - I was bit puzzled why he wants to use rucaparib for me, can't find many people on that one, so its hard to get a feel for how other people feel on it, but its apparently because of my genetic blood clotting problem - rucaparib has slightly less effect on blood thickening. The disadvantage with it is not being able to take erythromycin ... quite important when you're allergic to penicillin!
I’ve been taking Rucaparib for 14 months. At first I had a lot of fatigue, so they decreased my dosage to 300 mg twice a day. I have tolerated the reduced dose very well. I still have mild fatigue. My labs are good. I have noticed I get really red in the sun, but it’s not like a sunburn. It doesn’t burn or peel. It just fades away over a couple of days. I didn’t realize there is a problem with erythromycin. I can take penicillin, but that’s definitely something we all need to know. Treatment decisions are hard! I hope you make the best decision for you!
Thanks for that... hope I'll be better in the sun with rucaparib than with carboplatin. Rucaparib interacts with a shockingly high number of drugs, something like over 500, to a greater or lesser extent. I checked the list to see, was horrified to see erythromycin on it, along with diazepam, heparin, things I use fairly regularly, plus other drugs I use occasionally, though occasional use shouldn't be such a problem. Even a flu vaccination is listed as an interaction. Such a pain I'm allergic to so many antibiotics, leaves me no options really, but I'm told, if I need a week of erythromycin here and there once in a while, as long as I've been on rucaparib for a while, I can stop for week or so and then restart. Nothing's easy, is it😉
My oncologist did say the fatigue would be ongoing, although hopefully less of it as time goes by, once you get used to the drug.
My brother-in-law is an oncology PA. he says one of the things that's very challenging about chemotherapy treatment is that the best they can do with predicting drug interactions and identifying side effects from drugs interacting with other drugs is up to five drugs. After 5 it's really not scientifically possible to test for all the possible combinations of drug interactions that are likely to occur. I realized that along with my chemotherapy they've added a steroid and an allergen medicine, and that's just three prescription drugs! By the time I add in my blood pressure medicine to address the heart damage, my painkillers etc. It's as many as 9 prescription medication
I'm sure that's true - I know the information about erythromycin with rucaparib is based on the knowledge of how both drugs work independently in the body and how they are eliminated,so they work out from that there's likely to be interference with one or the other or both if taken together - but they don't have experience of what actually happens when someone takes both together. One problem is, we and our systems are all different from one another - I remember being given erythromycin when I was permanently on warfarin by some doctor who obviously didn't check for interactions, and the next time I needed it, a different doctor didn't want to give it to me because, apparently, most people haemorrhage if they take erythromycin at the same time as warfarin. But not me, it had no effect on my warfarin levels at all, I was fine, so their predictive methods are not 100%, they can't be. There's a drug called omeprazole that stops acid in the stomach so you don't get heartburn - they gave it to me in hospital after surgery instead of my usual ranitidine, and I had raging heartburn within 20 minutes that lasted all day, two days running. I went mad at them and insisted on having ranitidine instead on the third day, no heatburn, despite their protestations that omeprazole couldn't possibly give me heartburn... but it does. I've since met someone else who has the same problem with omeprazole, but it works well for most people. Pity we can't predict how each individual will react...
I hate taking medicines - seems the more you take, the more you need, not least to offset side effects of some of the drugs given. I know the average 60 year old takes 8 different meds a day, even without cancer, and how many of those are interacting with each other I wonder. Up until I was 68 and got cancer, the only drugs I was on was a blood thinner, ranitidine and asthma inhalers, so I was lucky I suppose - since then I'm on the way to being a pill popping queen, it seems, and I ain't happy about it, but what can you do... to some extent, any drug we are given is experimental, because we are all different, aren't we.
Hi Miriam, I've been on Rucaparib for 12 weeks now and haven't had many side effects at all. A little constipation but docusate twice a day seems to keep that at bay. I'm not sure this working for me yet but I think you should give it a try.
I can't tell you how relieved I am to hear its a bit of constipation you and some others get and not diarrhoea, hope that's my experience, constipation's somewhat easier to handle! I'm thinking I will try the drug - after my 5th carboplatin last week, the skin on my arms is so sore and painful (it was a bit after the 4th one, but its much worse now) I think I'd prefer to go straight on the drug, teeth permitting..
Hi. I totally respect your choice. You’re so young! I hope you get feeling better and can go from there. I also hope you get a second opinion if you haven’t already from a top specialist in clear cell. Xx
I totally understand your decisions, I am very nearly there myself. My 1st and 2nd line chemo did not get me to NED - the PARP then given did nothing and my cancer galloped on. I am on my 3rd line of chemo and the cancer is stable but no shrinkage of tumours.
I have only had barely 6 months not taking anything at all, I can't remember what its like to
have bowels that work properly, or plan an outing and not fear diarrhoea or nausea.
I have two more infusions and if that doesn't work I think I am ready to give up on the chemo route for a short while anyway, just to give my body a much needed rest from the incessant hammering.
I wish you all the best and hope you find some respite from your suffering, with restrictions lifting all be it slowly, now is the time to get out and have some fun, our National Trust tickets have never been more welcome. xx
Gosh! I'm with you. So true about not being able to remember what it feels like to be normal. I really hope that you see results in the next couple of treatments. It's very discouraging, isn't it? That's kind of my thinking. Without result sweats going to happen next and every time I take on a new treatment I add side effects. Blech. It's such a challenging decision. The one hand you feel like do I really want to exist like this? And on the other hand you don't want to give up any opportunity that could bring healing.
My heart goes out to you. Since 2016 I have had two rounds of heavy duty chemo for OC, a year apart, post surgery. I did not tolerate it well and had many side effects. I, too, took a hiatus for approx. 8 months and now am on a PARP inhibitor, maintenance pill called Rubraca. Few side effects and mostly arrested growth of tumors. Best drug for me. Do some research and see if this might be an option for you.
Hi tarney, when you say "mostly arrested growth" what exactly did you mean. Hope you don't mind me asking but I'm awaiting results re Rucaparib and needing some support.
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