update on shingles and caelyx

[lorraine71-Australia]

Hi my lovely ladies it's been awhile this singles has really knocked me around it;s made my right eye very sensitive to light, as for treatment my oncologist has told me no more chemo this is hard as in my heart i thought i would beat this beast, i gave it a good try 4 years in that time i've made some lovely friends on here and lost some amazing ladies. To all you lovely new ladies read all the positive post a read up about the new treatments, there is always hope take care my friends Lorraine💙💙💙

[Hidden]

As if you didn't have enough to deal with, Lorraine. Shingles is horrible and takes ages to recover from. So sorry you have that to deal with too. Wishing you the very best. xxx

[lorraine71-Australia in reply to Hidden]

Hi Mac, Thank you the singles is getting better, my oncologist has me on a pro inhibitor I will go back in 3 weeks and we will see, she gave me a 30% chance will could work we all react differently so here hoping..Take care Lorraine xx

[Hidden in reply to lorraine71-Australia]

Fingers crossed for the parp inhibitor, Lorraine....xxxx

[lorraine71-Australia in reply to Hidden]

Thanks xx

[Maus123]

Oh no, I'm so sorry Lorraine. You're such a great woman, always supporting others with good advice no matter your own situation.

How are you feeling at the moment, aside from the shingles? And will you try for a second opinion?

Many hugs, Maus.

[lorraine71-Australia in reply to Maus123]

Hi Maus, Thank you love the singles is getting better I'm now on a pro inhibitor. My oncologist gave me 30% chance it might work I go back in 3 weeks, she has mentioned a trial.

I have a re feral for a second opinion but with all that has been going on the last 6weeks the singles and te fall I did my knee in it's been hard.

You Ladies on this site and sadly our missing friends have help me so much in the last 4 years I think we need to give back to each other.. Take care my friend Lorraine xx

[Maus123 in reply to lorraine71-Australia]

Glad the shingles are retreating a bit, Lorraine. When you've recovered some more, hopefully a second opinion will show another path to try (like the trial you mentioned), if you feel up for it. Sending hope & hugs. Maus

[Manchesterlady]

So very sorry to hear this Lorraine. You are a wonderful support on this site always encouraging everyone when you are going through so much yourself. Sending love and wishing you all the very best .

Sheila xxx

[lorraine71-Australia in reply to Manchesterlady]

Sheila, Thank you for your best wishes I'm coming out of my dark place the shingles is getting better.

Take care I hope you are back on treatment very soon and with good results Lorraine xx💙💙

[babyboy1]

Hi Lorraine, wishing you the very best, remember they are always coming up with something new now, so it shouldn't be long before what you need is just around the corner!xxxDawn!🌺🌹🌺

[lorraine71-Australia in reply to babyboy1]

Hi Dawn, Thank you love for your lovely wishes Take care of yourself Lorraine xx

[Hidden]

Morning Lorraine - although I am new on here I already know that you are a fighter, you have given me and many many others invaluable advise and you will long continue to do so. Shingles causes depression and it is this that has caused you to go to a dark place, but believe me when I say that "it will be alright in the end and if it is not alright at the moment, then it is not the end" keep fighting, get a second opinion if you have to but don't give up......your instincts were right you will beat it, once the shingles has passed you will feel very differently. I am here for you any time. Take care Lyn xx

[lorraine71-Australia in reply to Hidden]

Hi Lyn , Thank you love I am coming out of my dark place the shingles is getting better,now back to the cancer, Take care of yourself and I hope you got the results of the scan with good results ..Lorraine Xx💙💙

[ShropshireJo]

Hi Lorraine. Really sorry that you are still suffering the after effects of shingles. It is a horrid condition, especially on top of all you’ve been going through in recent years. Sending you love and a gentle hug. Jo 🌺🌼🌸🌻🌹

[lorraine71-Australia in reply to ShropshireJo]

Thank you Jo, The singles is getting better the worst was that shooting pain in yt eye that has stopped. you also have had a hard time lately, I hope you managed to start treatment againe..Take care Lorraine xx💙💙

[Kryssy]

Oh Lorraine. I didn't want to hear your news, especially as we've come to know each other this last year. I'm not far behind you so know exactly how you feel. My shingles is still the same after two months treatment and perhaps Lyn is right that it causes depression as I'm in a very dark place right now. The news you have been given is devastating and I am really upset for you. Having gone through so much these last four years you should be looking forward to a long and cancer free life. It just isn't fair. I'm so sorry. Not many of us beat the beast but you are courageous and dignified in knowing that you have to retreat. You are a beautiful person and you deserve better than this. I am upset and angry that you have reached the impasse.

All my love to you and your family.

Kryssy xxxxxx

[lorraine71-Australia in reply to Kryssy]

HI Kryssy, Thank you for your lovely words, I hope your shingles is improving mine is getting better that shooting pain in my eye has stop, it also coursed my eye to be sensitive to light.

Now back to the cancer my oncologist has me on a pro inhibitor she gave it 30% chance off working I'll know in 3 weeks also talked about a trial. I hope you are in a better place and treatment is helping .Take care my friend Lorraine xx💙💙🙋

[Kryssy in reply to lorraine71-Australia]

Hi Lorraine. I'm so pleased there's something else for you to try. I was really upset to think that it was giving up time for treatment. That can't happen to you. You are one of the special people, so positive and helpful. You are also in a good cancer care country so I know you will be well looked after. Fingers, toes and tits crossed for you.

I think there may be a turn in my shingles this last couple of days. The pain has eased a lot and the spots don't look so angry. Won't celebrate yet though as another 2 months still to go on tablets.

Having no problems at all on Hycamtin. No side effects whatsoever, which is really surprising the chemo clinic. I did feel slightly wobbly on Tuesday afternoon when I got home from treatment but it passed. It was very hot and I was tired, which didn't help. I've been up since 4am today. Been busy but am tired now. It's just gone 8am so I may slip back into bed for half an hour and kick out the snoring beast and grab his warm spot. We are getting chilly mornings now but it's still hot during the day. I'm still white, even though my skin has improved since stopping caelyx. No tan for me this year.

Keep well my lovely. Love and hugs xxxxx

[lorraine71-Australia in reply to Kryssy]

Hi Kryssy , I do hope your singles is improving and all the best love with treatment .take care Lorraine xx💙💙

[LittleSan]

Hi Lorraine, I've been going through this shizzle and more for 7 years now and yet my darkest days mood-wise, I've ever had, was after having the active symptoms of shingles 18 years ago. Mine passed after a few weeks. Hope you can see the wood for the trees soon. Wishing you peace, strength and serenity whichever way the path takes you. Love and hugs. Sandra xx

[lorraine71-Australia in reply to LittleSan]

Thank you Sandra, Yes the shingles did help to put me in that dark place it's finally getting better now back to the cancer.

Take care of yourself and I hope your team has your treatment plain in place with good results Lorraine xx💙💙

[ZenaJ]

I can only say how deeply sorry I am to hear your news Lorraine. You've been here for everyone along the way giving us hope and encouragement. I can only send you a big hug and my best wishes for you and your family. We are all still here for you.

All my love Zena xxx

[lorraine71-Australia in reply to ZenaJ]

Thank you Zanaj , this is the good thing about this site we are here for each other and you have been for me many times when I've needed it..Take care my friend Lorraine xx💙💙

[ZenaJ in reply to lorraine71-Australia]

Will always be thinking of you Lorraine. xx

[lorraine71-Australia in reply to ZenaJ]

Thank you💙💙

[January-2016-UK]

Shingles is so hard to cope with even without the added complications of this disease and its treatment. I know you've had a number of caelyx cycles and it is reputed to be hard on the heart. You've always been so very upbeat, I hope there maybe something else for you. Perhaps a second opinion. All the best!

[lorraine71-Australia in reply to January-2016-UK]

HI Thank you yes the shingles did put me in a dark place it;s getting better,so now back to treatment my oncologist has told me no more chemo but mentioned looking fora trial .

How are you ? hope you are in a good place Take care Lorraine 🎈✨🎆xx

[Nancy222]

I'm so sorry to read your post, Lorraine. I had noticed you weren't on the forum as much and was concerned.

How do you feel about no more chemo? I understand that right now you're in a place of disappointment and pain, but perhaps taking a break, letting your body heal from the shingles, then you might be able to gather your inner resources for a second opinion. I read your profile again and you've been on chemo for such a long time with few breaks. Big hard hugs on what you've been through.

You've been such an inspiration on this forum -- one classy lady. Please keep us posted on your next steps, and allow us to support you the way you've supported so many of us.

XXOO

[lorraine71-Australia in reply to Nancy222]

HI Nancy, Thank you for your lovely words,I'm feeling better the shingles did send me to a dark place it's improving that shooting pain to my eye has stopped.

Now back to the cancer as for no more chemo it does feel strange be course while Ihad chemo most of the time I got results but my history is as soon as I go off chemo my 125 goes up so I have had a lot in the last 4 years.

My 125 was 800 about 8 weeks ago so I've been on a pro inhibitor and go back in 3 weeks to see if it can stabilizes the count my oncologist gave me 30% chance it might work she also talk about looking for a trial.

Take care of yourself Lorraine xx💙💙

[Nancy222 in reply to lorraine71-Australia]

Fingers crossed that the 30% is in your favour, and that a trial is in your future. It's difficult, I know. XXOO

[Yoshbosh]

Oh no, Lorraine, not the news you wanted to be given, I’m sure. Are there any other clinical trials you could be considered for? I hope once you get over all the side effects from the shingles, you are able to get your head straight. You’ve been through so much.

Sending love and hugs to one of our shining stars ⭐️

Vicki xxx

[lorraine71-Australia in reply to Yoshbosh]

HI Vicki.Thank you for your lovely reply I am starting to feel better from the shingles, now back to the cancer My oncologist has me on a pro inhibitor to see if she can stabilize the marker my last test it was 800 and she will look for a trial

Take care I've not kept up with all the news lately so I hope you ok ..Lorraine xx💙💙

[marylondon]

Dear Lorraine, shingles is awful but don't give up hope. Your immune system has taken such a battering with all the chemo over the past 4 years so give yourself time to rest and restore yourself and have plenty of treats . We are all behind you and sending you love, strength and support . Thank you for all your massive support over the years.

Mary xx

[lorraine71-Australia in reply to marylondon]

Thank you Mary, Finally feeling better from the singles that shooting pain to my eye has stop now need to clear up the rash and lets see what treatments for this beast my oncologist can find .Take care I hope your team came up with a good plain..

Lorraine xx💙💙

[marylondon in reply to lorraine71-Australia]

Very glad to hear that your shingles symptoms are reducing . So horrible especially when affecting your eye . You sound more like your old self ; talking about possible other treatments.

I ve had my 5th Carboplatin, not been that easy . Then hopefully Niraparib .

Mary 💐

[Hidden]

Lorraine, you have been a wonderful support on this forum, sorry to hear you are having a difficult time and please do not feel it's the end if you cannot take chemo. There may be other options, you just need to find what suits you best. Keep on fighting. Perhaps a break from chemo is what your body needs to overcome the shingles. Other options like juicing, a healthy diet and exercise could work to help your body fight this disease. This is what I did eight years ago when I was too weak to take more chemo. I also took Salvestrol supplements during that time. Don't know if this was the reason I was able to remain chemo free for 7 years or was it just a lucky break. I had a further reoccurrence six months ago and decided to try chemo again and have just completed eight rounds, which I found very difficult so hoping for a positive result. Taking a break from chemo sometimes may be the correct course of action for the body to recover. Best wishes. Una xxx

[lorraine71-Australia in reply to Hidden]

Thank you Una, for you positive post I've made friends with some amazing ladies and I've lost some but always found if I've needed advice or encouragement this is the place to come .

we need to keep sharing this between us especially for the new comers who are looking for support.Take care Lorraine xx💙💙

[RonLitBer]

Lorraine, hope you can get the shingles resolved soon. All the previous posts seem to have covered your options very well. Just wanted to provide some clinical trials and am wondering if you have been tested for any of the now added mutations besides BRCA 1&2. Would there be a possibility of trying Avastin perhaps after the shingles are resolved? I did a pretty preliminary search and there seem to be a number of clinical trials in Australia for ovarian cancer specifically. I am not sure if the specific locations are doable for you.

clinicaltrials.gov/ct2/resu...

There seem to also be a lot of trials for solid tumours in Phase 2 as well in Australia.

clinicaltrials.gov/ct2/resu...

Roni

[lorraine71-Australia in reply to RonLitBer]

Thank you xx💙💙

[Joy13]

Hello Lovely Lorraine. U r a kindred spirit in the journey and also an Aussie like me.

U have sent me some lovely replies and I am so appreciative.

There is so much knowledge and wisdom in this group and ai don’t know that I can add anything.

Just a feeling that there WILL be another option for u and/or that your body might do with some recovery time to strengthen for the next thing.

U r just so vibrant.

Just know u r in my mind and also my heart.xxx

[lorraine71-Australia in reply to Joy13]

Thank you for your lovely reply ,yes this is a great lot of amazing ladies who will also be there for us..Take care my friends Lorraine xx

[tara108]

Hi Lorraine. So, so sorry to hear this. Shingles is so aweful. Hope you feel better very soon. Please also get a 2nd and 3rd opinion. Chemo isn't the only option if you choose to continue other forms of treatment. I dodged Caelyx this time even though I know it works for many! I just have a strong feeling it won't work for me but that's a future discussion!

This is a hard path for us all and I am always touched by the support we have between us. Hang in there and thinking of you and sending lots of hugs from Sydney.

[lorraine71-Australia in reply to tara108]

Thank you Tara, My singles is improving , I hope you are ok... take care Lorraine xx

[tara108 in reply to lorraine71-Australia]

Hi again Lorraine. Thanks for checking in about me. Great news that Yes, I am back in remission after 5 chemo's and now CA125 is down to 16 after 9 chemo's and all on lower dose of carbo/taxol. 14 weeks cos of various things stopping chemo and I wish I could just get on and finish. But I know how lucky I am to have a good 2nd result and so much better quality of life this time and really hoping for a longer remission this time! We shall see. Hope your shingles are all gone now and you are maybe looking at a clinical trial? Let us know when feels right for you. Big Hugs from Sydney.

[lorraine71-Australia in reply to tara108]

Thank you keep well Lorraine xx

[Juleswhee]

Hi Lorraine , sorry to hear this, as the others girls of said you are supportive of all of us and your replies to our woes are always helpful and calming . I do hope that there is another option for you . Sending a massive hug across the world to you , keep strong my teal sister x Julia xx

[lorraine71-Australia in reply to Juleswhee]

Hi Julia, Thank you for your reply starting to feel better with the singles, I hope your treatment is going well take care Lorraine xx

[Maxjor]

Hi Lorraine--so sorry to read your post and what the oncologist said. The shingles are so tough, then being told no more chemo must be very hard. How are you feeling about it--would you consider looking into second opinions as there are other treatments besides chemo that might be possible. If you feel you are not able to do more we hope to be a support for you while you figure out the rest. Thinking of you and so sorry you are in this situation. ooxxo Judy

[lorraine71-Australia in reply to Maxjor]

Judy thank you ,The singles is improving and now I'll be back to see my oncoligest next week to see my options, I hope all is well with you take care Lorraine xx💙💙

[Janet235]

Just to let you know I am thinking of you through all your recent trials and tribulations... it must be very strange to get the point as you say of not actively fighting this disease with chemo any more... it seems always other health complications get in the way and compromise the ones ability to take any more and when quality of life becomes more important over quantity...

Hope at least you can recover from shingles which sounds very nasty and find some combo which is going to ease your poor battered body.

Stay in touch for as long as you can you are a big part of our family.

Love and hugs Janet x🌈

[lorraine71-Australia in reply to Janet235]

Thank you Janet for your lovely words, and yes this is a lovely family of friends there is always advice and encouragement.

I'm feeling better with the shingle now so will see my oncologist next week about options.

Hope you are feeling better i know you are hve had a hard time take care Lorraine sending my love 💙💙 xx I know you are looking forward to the new grandchild that is wonderful

[cathy46]

Lorraine so sorry to hear your news am feeling very sad for you but hopefully a break from chemo may help your body go into fight mode again I hate this bloody disease sending lots of love 💖 Cathy

[lorraine71-Australia in reply to cathy46]

Thak upo Cathy starting to feel better from the singles now will see my oncologist about options, I hope you are feeling better take care my friends Lorraine💙💙 xx

[Neona]

Shingles is so horrible but will go eventually. Please do go for a seconond or even third opinion. I paid for a consultation in London and Wow - what a difference! Sending lots of love, Wendy

[lorraine71-Australia in reply to Neona]

Hi Wendy , thank you for your reply, i'm starting to feel better from the shingles, i go back to ny oncologist next week hopefully she may have options, the shingles did put me in a dark place so I'm glad that's over ..take care of yourself Lorraine💙💙 xx

[Luci22]

Another hard post to read - I'm so sorry you are going through this and also hope there could be another option somewhere. Your input and presence on this site looks like it has helped and inspired so many on here. I wish you strength and peace and hope those shingles disappear too.

[lorraine71-Australia in reply to Luci22]

Hi Luci,Thank you for your nice words yes we are a very supportive community , I've made some amazing friends on here. so you are in the right place for advice and encouragement,

How is your mum?

Take care of you both Lorraine xx💙💙

[ellseybellsey]

Lorraine I am so sorry to hear this, you have always helped me think more positive about some of the challenges I have faced.

Do you have the opportunity to get a second opinion. Sending you virtual hugs.

Ellsey XX

[lorraine71-Australia in reply to ellseybellsey]

Hi Ellsey, I'm glad I've help you at times this is what this is site is all about,I will see my oncologist next week so hope she will have options .

Hope your treatment is giving you good results, take care my friend Lorraine xx

[Mopsie]

How miserable for you sorry to hear you are having to deal with this. Hoping you can get a second opinion you deserve another chance after your hard fight over the last 4 years.

Good luck and love

Maureen xx

[lorraine71-Australia in reply to Mopsie]

Hi Maureen, thank you for your reply i am starting to feel better from the shingles.

will be going back to my oncologist next we hopefully she will have options.

I just got a lot of my scans and reports incase i do go for a second option I asked the clinic nurse and she printed them out ,hope that helps

I hope you are ok take care Lorraine xx

[kat98116]

Oh Lorraine. I'm so sorry to read this post. You have been a great source of comfort to me on this board. This is no direct comparison, by any means, but when I had the terrible mouth sores on Caylex (Doxil) after just one treatment and only 4 months remission after front line I went to a very dark place. (I mean a "let's just end it now" place.) Once the sores cleared and I could eat and talk again I was better emotionally. Relentless pain and the arduousness of this journey wears down the very best of us....and you are among the very best! I hope that some rest and recovery will ease your pain and give you the strength to objectively look at your options. In any case, know that you are not alone! Hugs from Kathy in Seattle.

[lorraine71-Australia in reply to kat98116]

Hi Kathy, thank you for your lovely reply this is the best reason to be in this community we are here for each other.

The shingles did put me in a dark pace but I am feeling better.

I go back to my oncologist next week ..take care of your selk Lorraine💙💙 xx

[kat98116 in reply to lorraine71-Australia]

Oh I'm so glad! Feeling better, for me, makes a world of difference in my mental state. Do keep us posted, AND yes we are all here for you!

[lorraine71-Australia in reply to kat98116]

Thank you ..Lorraine💙💙

[Hidden]

I'm so sorry to hear your news Lorraine - is there any chance of getting on to one of the "non-chemo" trials or treatments? I'm really hoping there are some other options for you. Take care, love Dawn

[lorraine71-Australia in reply to Hidden]

Hi Dawn, I will be going back to see my oncologist next week ,maybe she will have options.

I hope your treatment is still giving you good results ..take care Lorraine xx💙💙

[Howick01]

Sending you lots of hugs🌻🌻🌻🌻🌻

[lorraine71-Australia in reply to Howick01]

Thank you...Lorraine💙💙 xx

[Solange]

Hello Lorraine, I'm so sad to read your news. You certainly didn't need shingles on top of cancer!! I do hope your eye will recover soon. As for being told that there's no more Chemo for you, I'm so sad. I could weep. Please don't give up hope - new things are coming along all the time now. Could you get a second opinion, maybe? Please keep in touch and let us know how you are, now and then, if you feel like it.

With loads of love, Solange 😊🤞💐

[lorraine71-Australia in reply to Solange]

Hi Love , Thank you for your reply I am feeling better from shingles it did put me in a very dark place. next week I go back to my oncologist we will see if she has options.

Hope you are ok i will keep in touch take care my friend Lorraine xx💙💙

[Solange in reply to lorraine71-Australia]

Will be keeping my fingers crossed for you. Xx😊🤞

[gmc920]

Thinking of you, Lorraine, and sending hugs and good wishes. I hope that all side effects from the shingles clear completely (and soon!), and once that happens, your immune system will be able to rebound. Sending lots of support and positive thoughts your way 💕

xx Gina

[lorraine71-Australia in reply to gmc920]

HI Gina. thank ypu love yes i am feeling better from the singles now back to see my oncologist next week she if she has options .

I hope your ok take care Lorraine💙💙 xx

[Seasun36-uk]

Hi Lorraine, sorry I haven’t replied sooner, been away for the weekend.

I have been thinking of you a lot (& Hertsmum & Suzanne).

You are such a source of support for all of us ❣️

I am willing another course of action/drugs, other than chemo. Your body has had so much to deal with, a break might be good, but I know you want to be actively fighting the OC. What about cryotherapy? I don’t know much about it. (See post from Ronlitber). At least it is not a drug to process.

Please ask your team for other options.

Much love & good thoughts flying over the sea from UK to Aus 💚💛💜💜💛💚

[lorraine71-Australia in reply to Seasun36-uk]

Hi Thank you for your lovely reply best wishes from down under ..

Take care Lorraine xx💙💙💙

[BeeWild]

Hi lovely lady xx such another hard post to read! The ladies as usual have rallied and given their brilliant advice please ask your team regarding alternative treatments x

You have always always given the best advice and a positive outlook and I thank you for your help and support on my journey I really do hope something comes up for you my lovely teal sister xx

Sending love and hugs

Bev xx

[lorraine71-Australia in reply to BeeWild]

HI Bev, thank you for your reply I starting to feel better from the singles I will see my oncologist next wee, hope she may have options.

hope your treatment is going ok and you got the port sorted out, I've had my port 3 years now with no problems..Take care Lorraine💙💙 XX

[Rlenesue]

So sorry to hear this, Lorraine... you gave it all you could... you're doing everything right, just the body doesn't want to cooperate. Much love.

[lorraine71-Australia in reply to Rlenesue]

Thank you ..Lorraine Hope you are ok xx