Lost it today.: Don't know where to start really... - My Ovacome

My Ovacome

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Lost it today.

fendweller
fendweller

Don't know where to start really ,after reading posts about parps I seem to have lost hope ,. I'm on second line carbo and taxol ,as always its affecting me badly despite a reduction ,I've one more cycle then a parp ,I'm brcca negative .I had high hopes of a decent quality of life and time, ,but now I've lost it ,the side effects sound dreadful and I've read they don't really work ,sometimes just weeks before your back on chemo ,I've tried to be positive but I just can't get it back ,tried calling my CNS last week and today but she's not returned the call .My husband is having a lovely afternoon in the garden ,I don't want to spoil that for him ,he's had a hard time with me this last week, missing family so much , feel free to tell me to stop winging ,I know you're all in the same boat ,but the parp thing is really worrying me.

Cheryl

55 Replies

Hi there. Try to breathe deeply! Yes PARPs have initial side effects and don’t always work but sometimes they work brilliantly and the side effects can’t compare to those from carbo taxol. You don’t know whether they’ll work for you. And don’t hesitate to ask for a lower dose—either start low and work up or start on full dose and reduce if necessary. I think we get fed up with the side effects because they’re not on a cycle and that’s hard to get used to. It took me six months to feel pretty fine but the nausea was mild and mostly gone after 2-3 months. After that I was very tired for a few months but not all day. I took two hour naps and was otherwise okay. Just try it and see what happens. You have nothing to lose! After a few months I was able to have a more hopeful mindset. When I finished my chemo and wasn’t ned I was very depressed but the PARP got rid of it. Hang in there. Xx

fendweller
fendweller in reply to delia2

Thank you for replying ,sorry to be so dramatic ,just lost the plot today ,tomorrows another day .xxCheryl

Hi Cheryl, my experience is similar to Delia’s. The Parps aren’t anything like the chemo at all. They take a little getting used to but I didn’t feel tired on mine particularly, or very nauseous, (just a bit) and it passed after 2-3 months. I’ve been on them 13 months and so far, so good 🤞

I can understand why you feel so low though, chemo is very hard. Parps are not in the same league.

What with Lockdown and depressing weather, everything is getting to us all, it’s so hard not to feel depressed, especially when you have unpleasant chemos to get through as well.

Hang on in there, better days are coming.

Lots of love and a big gentle hug xxxxxxxxxx

Thank you for replying ,as I said to Delia ,I lost the plot today ,well and truly ,trying to gather myself now ,xxCheryl

I know it’s scary I felt the same. Although I am BRACA+ I have been on Niraparib for nearly 2 years and I have had no side effects at all. Try not to stress and just take them and see what happens 😊 wishing you all the best, message me if I can help xx

Thank you so much for replying ,I've been rather dramatic today ,it just got to me , I will take your advice ,pleased you've been OK on Niraparib ,heartwarming news, long may it continue.Cheryl xx

I am brca negative. I decided against a parp after my first recurrence for much the same reasons as you have said. Now I am on recurrence number 2! I am also depressed and feeling hopeless about it.

There is no telling whether I would have done better with a parp or not. I had 18 months of chemo free time which has been lovely - but I think I will give it a go this time around after chemo. I read someone saying they asked for the lowest possible dose, I think that sounds a good way forward. I’m all for avoiding side effects where possible.

Sorry not much help but I get where you’re coming from x

Thank you for replying , as you say there's no way of knowing if things might have been different had you had the parp. 18 months free of chemo must have been good, I had 9 months ,which was lovely , I really hope all goes well for you ,I will give it a try and see what happens .xxCheryl

Hi Cheryl read your post and sorry you are feeling so low . Can’t offer any advice on Parps I’m afraid , stay strong, best wishes sending hugs 🤗 xx

fendweller
fendweller in reply to Spirit22

Thank you for your good wishes ,it means a lot .xxCheryl

Hi Cheryl. Sorry that you have been so low. Do hope the positive comments on here have helped you get over the worst of it. I think we probably all have days like that. Chemo is hard enough at the best of times. Add in all the other s**t going on at the moment and it’s no wonder you have felt low. I was chatting with a lady on Sunday who is having a very positive experience with niraparib and it seems it can make a real difference. Sending you love and positive thoughts. Jo 🌺🌼🌸🌻🌹

Its good to hear of someone who had a positive experience if Niraparib, I'm going to give it a go and hope for the best. Your right about it being harder with all the s**t going on ,seeing family used to give me such a boost , thank you Jo. XxCheryl

Oh Chery I wished Id seen your post earlier. We all have bad days and especially with everything going on at the moment. I cant speak for all parps just the one im on. Not everyone has side effects, some do and some more than others. Its like being on chemo, some tolerate it better than others. My side effects have been minimal. I wish I could reach out and give you a big hug cos I think above all else thats what we all need now. I hope you have a better day today. Kathy xx

fendweller
fendweller in reply to Katmal-UK

Thank you Kathy , I certainly had a meltdown yesterday ,feeling stronger today ,I will go ahead with the parp and hope for the best, we all need more hugs at the moment ,sending you one back .xxCheryl

Hi

We all have dark days and at the moment when there is nothing to look forward to in the calendar- little things like seeing family and friends even- and it's cold, wet miserable, it's not surprising. Go for the parp, you can change your mind later but possibly not if you don't start. In month 4 of niraparib and been fine after first month. Nausea, loss of appetite and feeling permanent state of exam nerves. Manufacturer dose is 300mg twice daily but my oncologist won't use that for anyone weighing less than 77kg, which may be a point to remember.

You're so right ,I'm going to give it a try ,I will take your advice and check the dosage ,perhaps ask to start low , you and the other ladies have given me some good advice ,thank you .xxCheryl

Hi Fendweller,Hope you are feeling a little brighter today. I'm BRCA2 and started on Olaparib last April. Unfortunately it appears to have now stopped working which goes to show that we are all affected differently. I can honestly say that I've had no side effects apart from a bit of constipation. I've actually felt healthier than I have done for years (but I'm only 53!). I walk about six miles a day, sleep really well, work and have two teenagers and a dog. I probably go to bed a bit earlier but that could be due to lockdown too. I did get a chest infection last September and was in hospital for eight days much to my disbelief but we had just stayed in a musty wooden hut in Cornwall for five days so that may have been the cause. If you are offered a Parp then I'd go for it. Some women do really well and others who think they'll do well sadly don't. Take care and good luck, Sticky3006 xx

Thank you ,I'm going to give it a go , I'm sorry it stopped working for you ,I hope you have a treatment plan in place ,I used to walk for miles before oc ,you've given me hope that I'll be able to do it again ,you certainty have a busy life ,take care .xxCheryl

Hello Cheryl - we all have days like yours, not that it makes your day any less significant to you. Although there is never a good time to have cancer, I think what we are all going through at the moment is of such monumental magnitude that its not surprising we crack occasionally. I had such a day yesterday, took myself off to bed at 9 and woke at 8am, it did the trick and today I feel like I have my mojo back.

Your team will come up with a good treatment plan for you, going forward you have lots of options even despite Covid, what I would say is that because I tried a PARP I was no longer eligible for any clinical trial that included any PARP. My team did not tell me that at the time, it may be different now, but do ask questions. Good Luck Lyn x

fendweller
fendweller in reply to lyn1987

Thanks for that Lyn, it wasn't something I'd have thought of , of course you're right ,everything is harder at the moment ,I'm sure everyone is having meltdowns ,I got in a major stress ,but as always you ladies helped. XxCheryl

Hello Fendweller, I don't often comment as all the other regular ladies are such a great source of knowledge, support and compassion but your post brought a lump to my throat and i just wanted to send you a virtual hug.I am about to start 4th line chemotherapy which will be weekly paclataxol I am not sure how long the course is yet as I will be speaking to my consultant on the 22nd.

The Parp I was given didn't work for me at all but neither did I have any side effects from it. What I wanted to say is that you must never ever give up hope, as long as there are treatments that can be tried there is the chance that the right combination is out there for us. Hopefully soon we will be allowed to start living our lives again and that will give us all the boost that we are all so desperate for.

With love June

Thank you June , I do feel rather pathetic getting in such a state when there are lots of you that have gone through so much more ,I'm sorry the parp didn't work for you ,I hope the taxol works wonders , I'll give the parp a try and hope for the best .Take care , sending love .xxCheryl

Hi Cheryl,I remember, post surgery, fighting infections and feeling so low I just wished fervently to die, but everything is temporary and I say thanks every day that I stayed for the wonderful ride and all the love and good health I am enjoying at the moment.

Nobody knows their tomorrows but for sure, better days will come your way.

Martine xxx

I feel for you. I’m usually an optimist and I think it’s helped me get through the tough times but recently I’ve had days when I’ve hit rock bottom and find myself crying over little things. I joined a zoom chat and saw my friend with her grandson of 1 year (they live with her) and I sobbed for an hour as I miss my grandkids so much. I’m just finishing my third line of chemo, had Parps and Avastin and have been told by my oncologist that depending on the scan will probably be advised to watch and wait to give me some time without treatment. This scares me. Am I running out of options. It’s difficult controlling my emotions when my husband and I are together so much. I feel I want to scream and shout but I hold it back so I don’t upset him. Hoping the good days come soon. On the plus side I had my first dose vaccine yesterday. Sending good wishes to you and hope that these dark days will pass soon. Cheryl x

Thank you for your good wishes ,I was feeling just like you yesterday , a neighbor took her dog out and I cried because I felt to weak to go out for a walk, my great grandsons sent me some drawings ,I sobbed ,its hard . I'm sorry you're having a difficult time too , hoping things improve for you soon .On the up side we're keeping tissue manufacturing going .xxCheryl

Please don't lose hope. You can't know until you try, what side effects you might get from a PARP - we all react differently. I've been on Niraparib since October 2017, and I have an excellent quality of life. I had very little nausea - I haven't had to use my anti sickness meds for so long, they're out of date. I was on the full dose until last year when my oncologist reduced it to try to improve my kidney function, which was erratic long before I started Niraparib. My CA125 crept up last year and towards the end of the year, a CT scan found a new tumour, but I stayed on Niraparib because the tiny bits of tumour I'd had when I started the treatment hadn't grown at all. A recent scan has shown no change at all, so the drug seems to be holding even the new tumour at bay. I am very sensitive to the sun, but other side effects are inconveniences, no more. I don't regret taking it for a minute - I had my first recurrence after only 7 months, and without the PARP inhibitor, I don't think I'd have been around to see the arrival of my 2 lovely grandsons and watch them grow into charming toddlers. Pre Covid, I travelled in the UK and Europe. I got a little dog to keep me company and walk with. I've done all sorts of activities and even now I do 4 Zoom exercise classes a week, sing in a choir (again Zoom at the moment), and lead as normal a life as the pandemic allows. Wishing you all the best. xx

fendweller
fendweller in reply to Numi

Oh my goodness ,how fantastic , thank you for replying ,that has given me back some hope of a decent quality of life ,I'm going to give it a go. Such uplifting news, long may it continue for you .xxCheryl

Hi Cheryl, I felt exactly the same as you after reading the reply's to your email and had a very dark week last week. I know there are a lot of people doing well on parps but they all seem to be Braca+ which I am not. My onc stress's that they don't know what is going to work and on who unless they try and I think that's enough reason to give it a go which I will when the time comes but I need to go through 2nd line chemo first and they are talking about postponing that due to covid which doesn't make me feel better because I'm not sure what the beast is doing. I hope that helped Sue xx

fendweller
fendweller in reply to SUE7777

I'm sorry your chemo is going to be postponed ,I've been very lucky ,no postponements , ,moved treatment to a green hospital .,so feel safe. I'm going to give the parp a go and hope for the best ,I was very emotional yesterday , I do know we must all be finding it really hard . I hope your team find a way of carrying on with your treatment ,I'll be rooting for you, I hope you you're feeling stronger now , you have made me feel better ,thank you Sue. XcCheryl

SUE7777
SUE7777 in reply to fendweller

Thanks Cheryl, we have enough to contend with Covid is just too much. Take care and stay safe Sue xx

fendweller
fendweller in reply to SUE7777

You too Sue .xx

Sashay2020
Sashay2020 in reply to SUE7777

She, I appreciate your mention that BRACA+ fare better than those who are BRACA- I am BRACA- and that impacted my decision to decline Niraparib after I completed front-line chemo. I desperately wanted some time off meds. I don’t know how many months I will have, but I do plan on trying the parp after second-line chemo. Sashay

SUE7777
SUE7777 in reply to Sashay2020

Hi Sashay, thanks for getting back. I would also like time off meds but when I'm in Lockdown it seems a bit pointless, I have felt really well for the last 6 months on Avastin and would have been doing so many things if it wasn't for Covid which has robbed me of time I could have spent doing things I love instead of being at home alone. Looks like the chemo will start when things get back to normal which won't be helping me. Sue

Sashay2020
Sashay2020 in reply to SUE7777

COVID has caused suffering for so many. I’m glad you are managing Avastin well and hope this year you can get out and the things you would like. Best

Sashay

SUE7777
SUE7777 in reply to Sashay2020

Thanks Sashay your an Angel X

Me too. I have just finished Carbo/Caelyx for a first recurrence and see my onc on the eighteenth with a view to going onto a parp. I too am brca negative, and am beginning to wonder if there is any point. I had persuaded myself that I was going to have a love!y summer this year, with C ovid On the decline and the chance to meet with family and friends, and now I just think that I am going to feel ill all the time, until the parps stop working!

fendweller
fendweller in reply to 27-359

That's exactly how I've felt for weeks , but after all the lovely replies I've had ,I've decided I'm going to give it a go, I couldn't see the point in anything, exercise ,make-up ,being happy ,but I've turned a corner today ,put some lippy on.The 16the is my last chemo ,so I'll be thinking about you ,talk to your team ,I could say I'll do it if you do ,but that's not how it works is it ,I truely hope you start to feel better soon .xx

Cheryl

27-359
27-359 in reply to fendweller

Thanks for that. I replied to you before reading the positive replies sent to you, and I must admit they made me feel better too. I had to smile when you write about letting your appearance go, as I too have stopped putting on make up and am currently wearing my old gardening track suit, as there is no point in making any sort of effort!Still, spring is coming, I get my vaccine next Saturday and I am going to give the parp a go if it is offered.

I am also going to follow you on line, so we can see how we are both managing. My onc seems to favour Rubraca for me, as long as my last lot of chemo has been successful.

Jenny

fendweller
fendweller in reply to 27-359

Let's do this ,I'll follow you too ,good luck .xxCheryl

Sorry your having a tough time. My oncologist told me at the outset of all this every treatment is unique because we are unique and they really don't know how one persons body will react against the next person. When reading posts it's easy to think of it as absolute that you will have all the negatives that you read. I do believe people who have had little or no affects don't post in groups like this for fear of upsetting anyone whose going through bad times. In essence you aren't reading the whole picture which makes it hard for you. You probably looked for posts hoping to get some reassurance and haven't found it, that doesn't mean it isn't happening. We look to this group for support which we get in abundance but it's s not the whole picture. You have come this far and this is a big blip in your journey but you will come to terms with what you want to do but remeber no two peoples journeys are the same. Xxx

What you've said makes perfect sense now I'm a bit more rational , thank you so much .xx

Hi Cheryl,I am so sorry that you feel so low. I have been taking rucaparib for 2months now and have no side effects on the lower dose which is 300mg twice a day. I am BRCA negative,but it does seem to be working. I did start on the highest dose, but I did feel pretty awful,but only took that for a very short period.. My Oncologist asked me last week if I wanted to try 400 mg twice a day which I have agreed to, but decided not to start them until next week as I had my Covid jab yesterday. I felt really well on the lower dose,but I do know that I can go back to that if necessary.

These things are always a gamble for all of us, but definitely worth a try . We all have good and bad days especially in this current climate. I would love to see my family but know it is not possible,however I am trying hard to look forward to better times ahead. Without the ladies on this site I don't know where I would be. Take care, and I hope the parp works for you without to many side effects. X

fendweller
fendweller in reply to Caleda4

Thank you for that ,I'm hearing quite a few positives about Parps now ,so feeling a bit more sane ,I've been worrying about it for weeks and getting lower and lower ,just cracked yesterday , I'm going to go with it and hope fie the best ,thank you for being so understanding .xxCheryl.

Good afternoon Cheryl! Parps work for many many people or they would never be licensed and approved by the NHS . Nirapabib does have low platelets side effects but they’d put you straight onto another if that happened. I’m BRACA negative. Although RUCAPARIB didn’t work for me I didn’t have any memorable side effects. Sadly I’m back on weekly Taxol number 13 of 18 which seems to be working up to now thank God. I’d stay on it forever as a maintenance treatment if at all possible. I’m told by my oncologist it’s a possibility if the end product is favourable. Please don’t be scared. There are more often than not many more options. I’m going to beg on my bended knees to try Oliparab . If no t back to the drawing board.

You’ve done it before and you’ll do it again.

Lots of love

Angela xx

Pleased that taxol is working for you Angela ,I'm going to give whatever's offered a try and hope for the best , I may be doing some begging to ,wishing you well .xxCheryl

Glad to see that so many have sent good wishes and encouragement your way, Cheryl. I understand how you feel. I have refused to take down my Christmas tree for fear that it will be my last. That must sound pretty nutty, but whenever I see it, it reminds me of my chemo free Christmas and makes me smile. Here’s to better days for you, me and all the Teal Ladies. Sashay

Enjoy you Christmas tree for as long as you want ,anything to cheer us up ,I may drape some pretty lights around the room to keep my spirits up. I'm feeling much calmer now thank you , xx Cheryl

Hi Cheryl, hoping that you are feeling a bit better after reading these wonderful posts. I am stage 4 ; had chemo, surgery, and then chemo again. I am BRCA neg. also and have been on niraparib since July. They lowered my dose to 100 mgs., because of my blood counts. I have neuropathy in my feet and tingling in my lower legs. I get a little tired, but my UTIs bother me the most. Don’t know what the cancer would do if I didn’t take this. Anyway, time will tell what side effects might crop up. I wish you well if you begin a parp. Hugs 😊 Donna

Thank you Donna ,I'm feeling calmer now ,you lovely ladies have saved me again ,I'm going to have the parp and see what happens .xxCheryl

Oh Cheryl, I am sure we all know how you feel. Like yourself I have days when I think life will never be normal again. I am just navigating my way through niraparib and spend most of my days just sitting around the house. I see you say your husband was having a lovely day in the garden and understand you didn’t want to spoil that for him. I sometimes feel really jealous of people who are fit and healthy. It annoys me when in the car I see couples out walking and know that I couldn’t even think about that. My husband and I used to walk all the time. Even my neighbours are annoying me, despite lockdown, in and out their houses like yo-yos!!! I understand you are apprehensive about taking a parp. I was exactly the same. I felt I didn’t want to take it as by that time following chemo I felt normal but also didn’t want not to take it either. I knew the ultimate decision lay with me despite what others may say. I was given the choice following the chemo and my husband asked the onc what she would do and she said she felt taking it would be the right decision. I was also worried as I can’t take tablets easily. I had a picture in my head they would be the size of horse tablets. They obviously weren’t and so far I have coped ok with it. Even better when I only take one now. It is a scary decision to make. I know everyone is different and we all make our own choices but I personally felt that to not take it to hopefully continue where the chemo had left off was not for me. I know we all have days when we cannot cope and things seem overwhelming but I always think of that song “ what a difference a day makes , 24 little hours”. Although things may be bad today tomorrow won’t be the same. Be kind to yourself x

fendweller
fendweller in reply to Kkaren

What wonderful advice , hearing you say about neighbors made me smile ,I've felt exactly the same , a neighbour takes her dog out four times a day and goes to the supermarket every day aaaaagggg , , I was so angry with everyone ,I've calmed down now , I tell everyone that tomorrow's another day ,but I'm rubbish at taking my own advice , I'm going to give the parp a go and see what happens , thank you for your lovely understanding reply .xxCheryl

I've been on parp inhibitors since 2015.it took a few months to get the dosage to suit me.Give me a quality of life as well as managing the cancer.Im advanced stage 4.Had been on Carbo/Taxol the Avastin later Carbo on its own.Then offered parp.Ive not looked back and am in contact with women who were put on the parp the same time as me.We're still here to tell the story.Cancer affects us more emotionally and psychologically at times than physical.There are different organisations that have help lines,it's good to talk .xx

fendweller
fendweller in reply to annieH1

That's so good to hear , all I was finding about parps was negatives , was feeling dreadful after chemo and with everything else going on I had a meltdown and lost the plot ,much calmer now and ready to give it a go ,thank you for replying ,its really helped .xxCheryl

I realize you wrote this a while ago and if you're anything like me, you've already come back up after what sounds like a pretty low down. But I just wanted to say I feel you! My therapist has often wags her finger at me for getting a case of the What If's? and tells me to stop thinking I know how things are going to be before they happen. I'm a big planner so of course I want to plan for every possible outcome before it even happens but if there's one things this crappy diagnosis and treatment (and covid) has taught me is there's only so much planning or What If-ing you can do. I don't like how it feels just yet, but I have been able to just starting living every day one day at a time, as trite as that sounds. I hate how that sounds, in fact. But it has calmed me down and kept my lows from being dangerously low. Hang in there. We got you.

What wonderful advice , you are right ,I have come back up now and am trying to live one day at a time ,not easy but I'm getting there ,like you I was a planner ,so as soon as I'm able I'm going to learn to be spontaneous .Thank you for replying,you and all the other ladies help a lot.xxCheryl

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