Hello my friends, Well my oncologist has told me she has no more options and as I'm feeling to weak to go on a trial she has booked me in for palliative care, I do feel down becourse while I was on treatment I felt like I was doing some thing now I'm not on any treatment and my 125 has gone up to 1500.
I've had quite a lot of chemo in the last 4 years and my body is feeling it ,I'm trying to keep bad thoughts out of my head it's hard.
My daughter is my full glass person and want's me to try for the next few weeks to get some strength up and try for a second option, I'll see how I feel then the Prof I won't to see is away till the end of next month.
I am so glad I found this site over 3 years now and in the time you all have been amazing ,many times I've needed someone to talk (correspond) with and you have not let me down, i also remember the lovely ladies who are not with us.
Keep up the good advice and encouragement ladies especially to any one new to our community.
My hope is that a treatment will soon blow the beast to bits. I'm feeling ok and will keep in touch.Take care all Love Lorraine xx💙💙
Written by
lorraine71-Australia
To view profiles and participate in discussions please or .
Oh Lorraine, that is devastating news, my heart goes out to you - a huge hug is winging its way from Coffs Harbour right now (... feel it yet?). I think your daughter is right to continue hoping, a rest and some special care for a few weeks may help to build your physical and mental strength sufficiently to try other treatment options.
Has your oncologist ruled out trying the parp inhibitors, there is one that is now available on the PBS?
I hope you'll find, as many do, that the palliative team are able to make a real difference to your quality of life. The shingles on top of everything else was really the final straw!
Going for a second opinion is wise, when you're a bit stronger.
PARP inhibitors are completely different from Arimidex.
Not sure which one is prescribable in Oz, but it's probably Olaparib/Lynparza.
Thanks Mac I thought Arimidex was a parp inhibitor take care Lorraine xx
• in reply to
So Arimidex is one of the oestrogen inhibitors like Letrozole?
xx
• in reply to
is my understanding, yes.
Gosh, I've never heard of your PARP! But my trip to Oz last year did bring home how the world groupings split up differently, on some fronts at least. My Niraparib was nowhere in site there at that time. Good luck on both fronts with it. x
I'm going pretty well, second scan on the trial coming up in a few weeks, so the proof will be in the pudding (now where did that phrase come from?).
Yes Mac27 is right, it is the Olaparib/Lynparza parp inhibitor that is on the PBS. I'm on a different parp inhibitor called Pamiparib (BGB-290) - a Chinese invention, so hoping it will improve my Mandarin at the same time as curing OC!!!!
That's tough news, Lorraine. I'm so sorry you have to deal with this situation, and I'm afraid for you.
I'm with Dawn though. Recovering some strength if possible (and maybe even getting rid of the shingles) over the next few weeks, then speaking with another prof for a second opinion sounds like a worthwhile goal.
I hope the palliative care nurses or maybe even a nearby hospice can maximize your chance at that break and ensure you're not plagued by shingles or other pain in that time. Instead, you deserve a breather and some comfort to start with. Hugs. Maus
Hi Maus, Thank you for your reply ,The singles is a lot better and all I need now as I said is to try and get my strength and my mind in a better place.
I'm waitting for the palliative care to come that won't be till 9th next month we have a
terrible shortage here off care as for Hospice we do not have any other then the hospital .
There's the start of good news, about the shingles all but disappearing. Chuffed for you and hopefully the pain is gone too.
Ah, in that case I think you've got all the excuse in the world to just ease your mind and body into a better place and relax for a bit, until the process moves on. Hugs, Maus
Hi Lorraine , I remember the advice you gave me when I first stumbled across this forum and am feeling totally inadequate to say the right thing to you now . Please rest and recuperate the best you can to enable you to try something else . We hope each day that a new discovery will batter this awful disease we share into submission and I pray that you will continue the fight very soon .Sending a great big hug across the oceans . Julia xx
This is a tough disease and you have endured a lot through your treatments. A break building up your strength will give it a chance to face whatever you decide to do next. All the chemo you have done over the last few years is hard.
I've got to reply to you, even though I'm in hospital at the moment feeling crap. You, of all the girls, was the one I thought would beat this. Such a fighter and even in the face of such devastating news you only think of others. I feel proud that you are one of my cyber sisters and helped me so much through my year of sh*t. Yes, I'm going to swear today, sod it. . Keep strong my friend and gather your loved ones close. Big love to you, Kryssy xxxxxxxxxxxxx
Hi Kryssy, I'm sorry love to hear you are back in hospital , in my heart I thought I would be alright but in the last few years we have lost some amazing ladies who put in a great fight.
You have been a help me when i've needed it .
I hope your home soon and feeling a lot better and continue with treatment giving you good results ..take care my lovely friend Lorraine💙💙 xx
Thank you. Yes, it's tough when it's our turn to say au revoir, especially as we're not ready yet. No matter what we do, say or wish for, what will be will be but the friends we have made on our wretched journey carry us through it. Some have gone ahead to wait for us and we'll be waiting for those that come along after us. Don't be scared my darling. We'll all be there holding your hand. All my love xxxxxxxxxxxxx
Hi Lorraine, so sad for you to hear such devastating news, words are just inadequate, I hope that you can recover some strength and are able to go on a trial, my thoughts are with you and your family.
Lorraine, that is really hard news for you to get your head round, and especially when you’ve been through as much chemo as you have. Your daughter is right though, now is a good time to give yourself the chance to rest and recover your physical reserves and the mental resilience you’ve shown us so wonderfully through all the treatments. Sending love and the warmest hugs Jo 🌺🌼🌸🌻🌹
That really is rubbish news Lorraine but like your daughter and others have said, take the break to recuperate and build up your reserves again then look at second opinions and other options.
This must be so hard for you to get your head around when you’ve been so proactive in trying to beat this beast!
I’m sure once your body is feeling less battered you can take on the challenge again x
Look at Lily Anne, she has had so many trials and tribulations but she’s still here fighting and she will get to see Sarah Millican in November I’m sure! You will be the same x
Sending you the biggest hugs, you’ve been a great support to me and you will continue to be xx
Lots of love and respect for your attitude and bravery
Hi Bev Thank you love for your reply and yes lily- Anne is a fighter.
I 'll get my head around it and continue take care Lorraine xx
Hello Lorraine so sorry to hear your news, if you take a break from all the treatments tests and hospitals and get your mojo back, then go see your professor next month when you will be fighting fit for a new treatment. In the meantime enjoy everyday laugh live love! I will look forward to hearing all about your adventures and what your next treatment is going to be, keep fighting! Virtual hug coming over to you. Lyn xx
I agree with Helen on this. You have had a tough bit of news Lorraine and I am so sorry. But hopefully you can rest a bit, recover a bit and then get more options with a second opinion. Sending you love xx
Hi Lorraine I am so sorry to hear your news, you've had a tough time lately (stating the obv!) I agree with your daughter, maybe take some time to regroup and rebuild your strength and then go for a second opinion. Sending you a big hug. Take Care. Kathy xx
Hi Lorraine, yes my treatment is still giving results, thank you for asking. However, I dont underestimate how very lucky I am and wish constantly that others, like yourself, were so lucky. There seems to be so many ladies recently going through such a hard time and its so hard to read updates. I suppose all we can do is be here for one another, just wish there was more to do, say...... Take care. Kathy xxx
So sorry to read this - I hope that the palliative care team can help ease any issues you have and help you prepare for whatever might be - it may be thaf once you regain some strength , options become available so always worth seeking a second opinion - thinking of you x
Lovely Lorraine, I’m sorry your oncologist has delivered such devastating news for you but I’m afraid I’m one of those sometimes irritating glass full people and am with your daughter, maybe a rest and then another opinion could be the way forward for you. Of course only you can make this decision and must take stock. Whatever you decide you know we’re all here for you to support and help you in any way we possibly can even if it’s just virtual hugs over the interweb.
Love and hugs winging their way from a damp and chilly U.K. ❤️Xx Jane
Thank you my friend, my daughter always knows the right thing to say to me.
I know that the ladies are always here for each other that is way i'm so glad I found this site over 3 years now and have corresponded with some amazing ladies you included.
So sorry to hear this Lorraine. Such devastating news. I agree with your daughter. Build yourself up a bit and then make a decision. Sending lots of love xx
Big hugs from the UK! I just want you to get strong again! Your body has been through so much with all the drugs and then shingles too. Your posts are always so kind & thoughtful Lorraine. I wish I could magic things better...please keep in touch & let us know how you are.
I'm with everyone else (daughter too)---hoping you can get your strength back and consider some other options besides chemo. I am so hopeful there is something that can work well for you while keeping your strength up. Thinking of you Lorraine. oxox Judy
I have been reading these posts since my sister was diagnosed in January and I am grateful for your wise posts and believe like your daughter, regain your strength first. My prayers and hugs from the states to youLorraine. Nancy.
Thank you Nancy I'm glad you found our community and I'm sure you have had good advice and support, that is way i'm glad i found this site over 3 years ago now and corresponded with some amazing ladies.
How is your sister? I hope she is ok take care both of you Lorraine xx
Dear lorraine you are just amazing and full of love and gratitude like all the other ladies on this site. Know that you are also making a big difference in others lives during these struggles.
I know there has been challenging news including your own challenges posted on these updates. I feel bad when I say she went from stage 4 a, high grade in January to no evidence of disease and a ca 125 of 10 in july. She just finished her 8th chemo and next month we meet with her doctor about maintenance medication. Are you brca negative? We did talk about the parp inhibitors and also avastin.
How are you now? Prayers for your beautiful self.xoxo nancy
Hi Nancy, don't ever feel you should not post good news we all like to hear positive results and it helps new ladies who are worried that there is hope.
I hope it continue for your sister ..Take care both of you Lorraine xx💙💙
Yes a bitter blow for you after your tremendous resilience in dealing with all the chemo over the past 4 years . Time now to restore yourself and Palliative care will help with your quality of life . Then you can review your options with the new Prof. There is always Hope . We are all behind you .
Hi Lorraine, I just wanted to send a big hug and best wishes that you get some rest and regain strength over the next few weeks, then reevaluate options with the new prof. Sending love and support from Ohio.
Lorraine, I can't add much to what has been said. We seem to be echoing your daughter. The fact that the shingles are gone is really good to hear and hopefully it will give your body a chance to build up some strength. Second opinion, a PARP or a clinical trial may also provide some additional help if the chemotherapy has run its course. You have always been so upbeat and supportive to others perhaps its time to turn some of that in your own direction.
Dear, dear Lorraine -- hang out with your loved ones, rest, laugh, and know that women from all over the world are sending loving thoughts your way. You have inspired so many people on this site. I'm sending this message with much love and respect. XXOO
Thank you Nancy for your lovely words and I have also been inspired, from some amazing ladies on our site. I'm glad if I have helped in any way as we all know it a hard journey and with the support of our ladies who understand what we are going through helps.
Oh sh___t Lorraine! You are such an inspiration to me as I feel we are traveling similar paths. I'm with your daughter! I know for me that when I'm feeling poorly my mental state follows me down the rabbit hole. I pray that your poor body will rest and recuperate along with a refreshed mind. Love and hugs from Kathy in Seattle.
It’s honestly not so bad on palliative care. No more veins to find, sickness or side effects. The body is amazing and now mine isn’t fighting poisons it’s doing a grand job of fighting the cancer as doesn’t have divided resources.
I know I’m not a shinning example as I do know I’m clinging on for November but I was clinging on for April and June too
I’m not sure how your health system works but do you have a hospice support? They are great for patching you up and sending you home.
Sort out some mini goals that you want to do, make memories and put OC out of your mind. Enjoy today.
Thank you Lily-Anne, some of our lovely ladies have said that I've been a inspiration to them you have been that to me.
I'm so glad I found this site over 3 years ago now and corresponded with some amazing ladies.the support is important from someone who understands what you are going through.
As for hospice there is not one near me at all so it would be in the local hospital.it would be nice it they was one,
My goal at the moment is to get all my Christmas shopping done I've been doing it on line.
and to get some strength back, it would be nice to be able to spend a little time in the garden spring is on it's way.
I thought about Christmas shopping then I sort of discounted it now you’ve made me think again. I can picture myself on the edge of a cloud feet dangling, despairing at Hubby not doing any Christmas shopping and the kids being so disappointed, especially the little ones.
My imagination should have a full stop!
Let me know how the shopping goes I may yet change my mind again
Hi Lilly-Anne we think a like, I've always loved Christmas and with this thought in my head, I might miss this one I have started my shopping most on line, my husband said that the family would not expect me to give Christmas present , hopefully I still be here and you also.
My daughters love to read so I've ordered gift certificates at the book shop as for the grandchildren they are getting older now and it's harder to shop for them, I've always giving them money for birthdays and a gift under the tree , i might have to give them a Christmas card with money this year.
I hope we both get to enjoying Christmas with our families ,
Lorraine, I believe you will adjust and will strengthen mentally and physically, because you’ve proven what a strong lady you are going through such a lot of chemo.
Never say never, no one knows what the future holds. Enjoy your ‘you’ time just now, you’ve lots of support here xxx
Sow and you will reap the rewards. All the posts you sent on this forum giving comfort, advice and common sense are coming back to you from all your friends and supporters just when you need it. Get strong, my dear, it'll make you'll feel better again, just as LilyAnn said. Gina xx
Hi Gina, thank you for your reply , i have also had great support from this site I'm so glad that I found it over 3 years ago now and made some lovely friends and corresponded with some amazing ladies from all over the world who understand what we are going through.
Let hope that in the very near future a treatment can be found for OC.
Hi Lorraine Sorry to hear this, but hopefully they will try a parb inhibitor for you, your body has been through so much and shingles is awful to deal with even if you don't have cancer to battle with too. Try and repair your body with good nutrition, gentle exercise, I found reflexology brilliant when I was at my lowest during chemotherapy and after getting a bad flu in the middle of it and I also take two shots of juiced wheatgrass every day I avoid sugar and dairy and eat as much raw veg as I can. I do yoga daily. I'm new enough on this I was diagnosed last November aged 35, but I always read your posts and you are very inspirational and strong. Your daughter is right what other way can we look at the glass only as full. Sending you positive energy. xxx Take care Clare
I'm so very sorry to read your sad message, Lorraine. I do hope you'll feel much stronger soon, having a rest from treatment. I can completely understand why your Daughter wants you to try something else when you feel stronger and I hope you will be able to. New treatments are being trialed all the time and maybe there will be something you can face doing. I hope you can get a second opinion. I couldn't reply to your message this morning - I was too upset for you. I hope you can have a calm and peaceful time and feel surrounded by love from your family and friends. I'll be thinking of you and looking to see any messages you Post.
Sending much love and a virtual hug and 💐, Solange 😊
Hi ,thank you for your reply , as soon as i get my head around this news and manly get my strength, back i will see about the second option ,my oncologist telling me i had no more options did set me back.we can only keep trying.
I hope your treatment is giving you good results take care Lorraine xx💙💙
Dear Lorraine,so sad to read your sad news, but hopeful that now no more chemo, your body will be able to repair and help your strength to build up. As I read your history, I see your continuin strength and positivity which as we all know is a massive plus for all of us trying to overcome this foul disease.
Much love, strength and support to you my dear kindred spirit
So sorry to hear this, Lorraine. But I am actually convinced that time off chemo can be healing, so try to pack in the treats and some time in nature. I get what you are saying about the importance of feeling you are doing something with treatment. Maybe you can look at this time off in the same way - nurturing and healing the body? On the subject of palliative care, my cousin has just transferred to this and found it a much more positive experience than she expected. You have the possibility of a second opinion, so I think you are keeping all the doors open. Wishing you much strength and courage on this tough old journey. xx
ps I don't get hung up about my CA125 - prior to starting the Rotterdam I didn't know what it was and it didn't make any difference. Later I found it was 18000 and I had been walking about doing stuff and not feeling too bad!
Lorraine words won’t express how I feel reading your post, I hope the palliative team help you build up your strength and able to fight this hideous disease again.
Hi Ellsey, Thank you for your reply .I've had so many well wishes from our ladies ,I'm so thankfull I found this sitre over 4 years ago ,it helps to be able to correspond and make friendswith someone who understand ..hope you are ok take care Lorraine xx
Sorry to hear your crappy news, however, just wanted to reply to say that my mum had 8 lines of chemo in as many years, and was told there was nothing left available for her apart from a trial, so she hot footed it to the chrystie, sadly half way through it was clear it hadnt worked as she was so weak, her oncologist sent her home with a long suply of steroids in the hope they would at the very least make her more comfortable and give her a tad longer, they did, within 2 days she was walking a park with my 2 and her dogs (the park takes at least an hour for one route!!!)
Months down the line she was fit enough to have another line of chemo.....
Maybe you could ask for some to help get you ‘up and rubning’?
Dear Lorraine I’ve just joined this sight and so am responding as one starting this fight and new to this sight . I’m so sorry to hear your news. Everybody has given all the good advice. All I can offer is my very best wishes for you to keep positive, and be at peace in this time of respite from the drugs before the next trial. I loved LillyAnn’s advice. Sending you healing thoughts and love from Scotland xx
Hi Thank you for your reply , yes it's hard to get your head around it .but i try and get my strength up and then go from there. I hope your treatment give you good results ..take care Lorraine xx
Dear Lorraine am so sorry to hear your news hopng that pallitive care will give you some pain free time so you can do some things that you want to do and also help to get some strength back you are in my thoughts sending lots of love and hugs Catherinexox
Hi Catherine. Thank you I can not sleep at the moment it's 2.30 am here and I had so many lovely reply's from are teal sister that I make a cup of tea and here I am.
Yes I'll try and get my strength back and go from there, the hardest thing at the moment is my appetite.
I hope you are ok thank for the love and hugs if best wish could curer this beast i would be cured just from all my lovely reply's ..take care Lorraine xx💙💙
Thank you Cathy, I am feeling better the shingles is just about gone and I eating a better also ,I will go for the second opinion next week.he may say the same thing as my oncologist but need to know.
glad to hear the shingles have cleared I seem to be going ok on olapirab my ca125 was back down to 12 and the tumour on my spleen has shrunk I see my oncologist Tuesday and he will probably want another scan have been on them every 3 months Side effects are minimal so far a bit of nausea and heart burn occassionly but always seem to be tired Will keep my fingers crossed for your upcoming 2nd opinion and hope something else is available for you xox Cathy
You are the one most highly looked up to women I know I this site. You have such wisdom you have shared to others and oh so strong! I am going along with your daughter let’s see where you are in a month with rest, hopefully you will be strong enough to try something else. You are a wonderful person who has always replied, one of the first I must add, to me when I posted. Your wisdom, strength and knowledge is at the top. I am sending my love and prayers to you Lorraine. You get strong! ❤️ Peggy xx
Hi Peggy,Thank you for your lovely reply, especially as I know the heart break you are going through,yes my daughter is right I will try and get my strength up and go from there.
I hope those lovely grandchildren can help with your broken heart ,,
Thank you so much Lorraine! I believe my grandchildren are helping. ❤️ Stay strong Lorraine. Sending my prayers and thoughts and lots of love to you. ❤️ Peggy xx
Hi Lorraine, really sorry to hear this but like your daughter has said, maybe time to pause and get your strength back.
You are such a lovely person, your warmth shines through and you're always here to give love, advice and support for everyone. We're all here for you Lorraine.
Hi Michelle, Thank you for your lovely words that is the thing about this site we are here for each other,I've corresponded with some amazing ladies in the last 4 years.
Hi Lorraine. I am still adjusting to finding myself in the world of cancer. When I think I am sinking into self pity and the black hole of fear I look on this site and the posts from people like you give me comfort, hope and knowledge. Just wanted you to know how much you have helped me and to return some positive thoughts to you. Xx
Hi Thank you I'm sorry to read you need to be here but you have found a very supportive community with some amazing ladies to help you with advice and most of all to help you out of the black hole, staying positive is not always easy.
It's 3 am here and I've not been able to sleep so answering and reading post from all over the world how great is that.
You've fought this for the past four years and it's a good idea to give your body a rest to recover from all those successive chemo sessions and having to battle the symptoms of shingles on top of it all. God willing, with the help of your consultant other options might present themselves.
Your daughter is right to keep you looking on the positive side of things. Take care Lorraine..we're thinking of you. Xxx
Hi Maryanne, thank you yes my daughter always lifts my spirits as do all my lovely replys on here. I'm finding it hard to sleep It's 3 am at the moment and I"ve been reading post and answering so I might try and go back to bed for a while.
I'm so sorry i woke you up Lorraine... didn't think of the time difference how silly of me. Yes, fitful sleeping is something we all experience and it can be quite annoying. Will let you catch a few winks now Lorraine. Keep up the gpod fight and sweet dreams. Xxxx
I’m sorry it has taken me a few days to reply to you, but I have been having a few challenges on my side.
I’m really sorry that your onc can’t suggest anything else at the moment. Hopefully as others have said, once you have had some time to regroup and get your head straight, you will be able to consider what next (if anything, because that’s fine too).
I have found the palliative care team in hospital to be far more useful than the actual medical team. One of the most junior doctors who has seen me, has actually been the best person and has helped my symptoms enormously. I look forward to her visits each day. I hope you are able to get some good help like that too.
Hi Vicki, thank you for taking the time to reply I know you are having a hard time
(this beast of a thing).
I was upset when she told me no more options but as soon as I feel a bit better I'll try for a second option. 💙💙love and hug from down under Lorraine xx
Hi Lorraine. I have only just read your post and, like all my teal sisters, I am sending you love and gentle hugs, hoping you will feel stronger soon. There is amazing global support winging it’s way to you because we all care. (I’m in North Yorkshire, England). Love & 🌸🌼 Carolyn x
Thank you Carolyn, yes the support from our teal sister 💙 over the last 4 years has help me many times.I'm glad I found this site I've corresponded with some amazing ladies around the world.
I'm so sorry to hear this news Lorraine. My wish is that you are well taken care of with palliative care and that you can build up strength as the others have said. It is still possible to gain some strength I hope. Your daughter is a great warrior along your side. Take all the help and support you need. Big hug 🌼
Hi Luci, yes Lee my youngest is my full glass daughter my eldest can not coupe with it the same way,she is supportive, and takes me to appointments but can not handle talking about what might be a head, that is way I find this site so important to me I can correspond with someone who understands.
I hope you and your mum are ok take care Lorraine xx💙💙
Oh I can imagine how your daughter feels. As of now my mom is ok, knock on wood, she has a follow up in Oct. But I know the feelings and the fear as a daughter, its all out of love. Take good care, try to build that strength if you can. I once posted about some liquid nutrition about getting in high dense nutrients, which intuitively sounded good. I'll have to make a post about it, if it's useful. Take care. 🌼
I have not written on this site before but I have been following all you lovely ladies for several months. And I have read much of what you have written over time and you have always been an inspiration to me. So firstly, thank you. Then I see just how many replies you have had. 100 !! Which must mean you've been a help and an inspiration to loads of people in the same dreadful situation. I hope you are feeling the strength and thoughts we are all sending you from all over the world!
I really hope that after the palliative care you will feel much better and stronger and able to resume normal life again and retain your great sense of humour!
Hi Guri, Thank you for replying to my post, I'm glad you have started to correspond with us you will correspond with some amazing ladies and there will help you along the way.
I've been lucky in the last 4 years to have made so many cyber friends and lost some beautiful souls that has been part of my journey.
With all the new treatments and trials I hope in the VERY NEAR future this beast can be
eliminated. Take care of yourself love Lorraine xx
Oh Lorraine. I just saw your post. I am so sorry to hear this and when you feel a bit stronger please talk to someone about the possibility of parp inhibitors or anything else to see if they may help. I am also not sure if they are on PBS in Oz unless on a clinical trail but will ask when I next see my oncologist, Monday week.
Also can you get some home care with nurses visiting until the 9th and some help at home? Sending much love and big hugs from Sydney.
Hi Tara Thank you for your reply, I will try and see prof at Randwick women's hospital when he gets back in 3 weeks for a second option,
I go to Penrith cancer clinic now ,Which hospital do you go to ?
my oncologist did not mention pro inhibitors.I trid to look it up but could not find much information for here in Oz.
Nurse is suppose to ring before palliative care come,it's very hard in my area the mountains and Penrith the amount of cancer patients is terrible and only getting worse.
Hi again. I have heard good things about the Prof. at Randwick women's hospital.
It is PARP Inhibitors. Type it into google and There is alot of information on them also on the Inspire ovarian cancer thread in USA. The main ones are olaparib, Rucaparib and niraparib. They do have side effects and seem to work better for women who are Brca 1 or 2. ie genetic, but they do work for some non genetic women. They can stabilize and slow down the cancer returning as a maintenance drug. There is also avastin. But your Prof will know this far better than me and also if its suitable and available for you.
I go to Royal North Shore hospital on the N. Beaches and a chemo clinic in French's Forest. The new hospital is opening 4 klms away at the end of october.
Yes I understand its hard to get care in the mountains but didn't know about Penrith.
I am sort of ok and looking forward to finishing my 2nd line chemo and hopefully having a break from treatment and a reasonable remission! But who knows?
Lorraine I’m sorry that you’ve had this news. Let the palliative team care for you and help you gain your strength. Do go for that second opinion and at least this way you will know in your heart that you left no stone unturned and I’m sure your daughter will feel comforted by this too.
I’m starting 5th line this week and those options are getting very limited but I’m giving this my best shot. I’m like you Lorraine, one of the oldies on the site. I have been on this road for 4 and half years with a lot of treatment but I’ve also had some amazing times. I want to see my youngest daughter become an adult. That would make me so happy. It’s 3 years away but only God knows the beginning and the end and nothing is impossible. That’s the one thing that convinced me to start chemo again when I had only finished a month ago. Will say a prayer for healing and peace in your head and heart for you this evening. Hugs xox
Thank you Julie for your reply and prays, I;m feeling a bit better to-day ,it's hard getting my head around the fact that I'm not on treatment ,when I was having chemo I always thought that at least I was doing some thing to control it .
When the pro gets back in a few weeks I will go for a second opion even ifor peace of mind that I did try.
I hope your next treatment gives you that time to see your wish for your daughter to become a adult...Take care Lorraine xx
Thank you Lorraine. Are you Brca ? I am and have had 2 different parp inhibitors - Rucaparib and Olaparib. They were much easier to tolerate than chemo.
There’s also a girl on Facebook called Fi Munro. She’s non Brca and on a trial using 3 drugs. Would be worth looking at all this before you meet the Prof for a second opinion and at least you’re prepared xo
Hi Julie, I'm negative so not sure if i have too many choices with the parp inhibitors my oncologist did not suggest any, I'll try and find out about them.Cheers Lorraine xx
Keep reading your on going posts and finding it difficult to reply because I also feel I am coming to a cross roads of whether to carry on or accept that further treatment is not going to be good for my body.
I hope you can continue to post for a lot longer yet.
Your body might surprise you ( like Lily Ann ) and go into relief and recovery mode now more chemo.... well, maybe not for a while yet anyway.
I too will not be having more chemo at present. My choice but guessing Oncologist would agree. Body just too weak. Not ruled it out for when I can build up some strength.
Just wanted to send love courage and strength to you. Also a second wind once you can get your strength back... I love that you have a daughter who is glass full. And courage to your other daughter...❤️ Much love and keep us posted.
Thank you, yes my daughter always makes me feel better arfter talking to her my other daughter just gets too upset she copes in her way I'm lucky to have them both.
Hugs Lorraine xx my mum was also told in the last week that chemo is no longer good for her and has been referred to palliative as she won’t stop bleeding from tumours in her vaginal vault, my heart just breaks.. I feel lost, I feel empathy for you and your daughters. Mum has also fought this for four years with countless chemo, radio, surgeries.. we are also in NSW.. if your daughter would like to meet or just chat, I am happy to chat.. take care and lots of hugs xxxx
Hi, I;m so sorry your mum is at this stage ,I know how she feels it's hard to get your head around the fact that there is no more treatment,at least when I was on chemo you have hope.I have the palliative care nurse coming on Monday to talk.
If your mum would like to talk or you just message me.
Hi,I live at Winmalee near Springwood in the mountains I do go to Penith caner clinic, is thatt where your mum goes .I've been looking for a holistic near me there is none in the mountains but mt Druitt hospital has a good one I've been told. if I need one I hope I can go there and not Nepean hospital when the time comes ..cheers Lorraine xx
Mum has been going to Westmead Hospital cancer care centre, but her palliative is at Mt Druitt and the dr there has been really great and supportive. I’ve had a little look around and it’s not what I expected it to be, the nurses are friendly and it has a lot of light coming through. If you ever get to go to Mt Druitt, please sing out as mum lives really close by xx
I read your message while I was in Lourdes so I'm sorry it has taken this long to reply. I was really sad to hear that they are not offering any treatment for now. I did the only thing I could do for you. I prayed really hard at the Grotto and lit a big candle for you and all the other lovely ladies. I hope that very soon they can come up with an alternative treatment. I can see you are not ready to give up and stil have hope. You are still being your usual helpful self on the website despite everything. Well done. Take care.
I am sorry to respond so late Lorraine, Hurricane Florence slowed me down and this was the first message I saw on line. I am so sad about your news. I do hope you can rest and recoup because there is always hope...no matter what. It must be so hard to wrap your brain around stop after 4yrs of fighting this insidious disease. I send you love and support from North Carolina. Valerie xx
Hi Valerie, Thank you for thinking of me , i hope you and your family are ok arfter Florence I've see these Hurricanes on our TV news and they are so destructive,
I'm finally feeling a bit better ,fatigue is the main thing .
I have a second option in a couple of weeks he may say the same thing but at least I have tried, I must admit is was easier when I was on treatment becourse, I felt like I was doing something to fight now it's all stop and it does play with my head.
I need to get myself in a better space for my family and of course my OC friends,with all the love and best wishes from our community it has helped.
I hope you are ok take care my friend Lorraine xx💙💙
Well there is always that great physician who walked the earth 2,000 years ago. He wasn't just alive then, he is now, I know because I came face to face with him about twelve years ago - yes really! For five days I was here on earth and yet with him. Its a long story but one that changed my life for ever, it couldn't not change it really. Why me? Heaven only knows but there it is, it happened. I am just a very ordinary house wife and was a bit reluctant to post this but I think he wanted me to, so I have. If its not for you please ignore it. I just want you to know that my love and prayers and best wishes are with you.
I dont write often but do follow all the posts and yours have always been amazing so sorry for your end of road options but get strength and try second opinion even my mom is not responding at all to chemo tumors have grown in size and we have also been suggested palliative care its heartbreaking especially like you she feels worse with no active treatment take care may god give us all strength to fight and endure this monster like Australia we dont have a hospice care and its either home or hospital
Hi India, Thank you for your reply, sorry your mum is in the same position, I'm feeling a bit better so will have my second opinion next week, he may say the same thing as my oncologist but I need to try,I had the palliative care nurses call to the house and Feel that it was a good thing to be in the system, palliative nurse and Dr will come to the house .
How does your mum feel would she go for a second opinion?
Give my best wishes to mum and take care Lorraine xx
So sorry to read this Lorraine, but like all the other ladies in hoping you feel much better, and manage to get a second opinion...you've been such a warm presence on this site and I expect most of us aren't ready to see you go!! Lots of well wishes from Leipzig, Christina xxxxx
Hi Christina, thank you for your reply,I am feeling a bit better and will go for a second opinion next week , he may say the same thing as my oncologist but I need to try .
I've been on this site now for 4 years and corresponded with some amazing ladies the advice and encouragement has been so important in helping me.
I hope your ok you take care of yourself Lorraine xx💙💙
Please stay positive and that's the only way to beat the terrible disease. I am a firm believer of immunology because God has equipped our bodies with very strong self defense mechanism. The Resurrection power in Christ also is in our bodies and I pray that you stay positive and faithful and may the Lord heal you.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Lady care magnet & chemo & surgical menopause
No more chemo
Palliative care - transition
