Well after being warned I was definitely in recurrence in June, I had my scan results and there's been marked progression 'of concern'. Many small volume nodules and tumours dotted around my small and large intestines and omentum. My scan report states "increase in size of mesenteric nodes but no obvious adenopathy" which seems a contradiction but hey ho, it is what it is and there's carbo/taxol waiting for me! I've had a fabulous, treat-filled summer so I'm hitting the ground running but still yelling "don't panic, don't panic".
Love to all, Sandra 💐 xx
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Fab photo, having had 2 recurrences all I can say is you can do this! Hope treatment goes 'well'. Might be worth you asking if you are eligible for a parp inhibitor after chemo, just a thought..... best wishes. Kathy xx
Thanks Kathy. Yes, as long as the chemo is a success I'll be offered Olaparib or considered for ICON9 trial. So everything crossed 🤞. You are my role model so I'm hoping my treatment will be as successful as yours. Hope you're well. Xx
Hi. What's the ICON9 trial, not heard of that one. I hope you do get on Olaparib and are as successful as me. I can honestly say that the side effects are negligible. Everything crossed for you. Do let us know how you get on. xx
Icon 9 is a phase III trial combining Olaparib with cediranib (acts like Avastin) so as I had a great response to Avastin this may be a good combo for me, if not then I'd still be on Olaparib on the control arm. Will keep you posted. Xx
Great photo San.Wish you well with the treatment.I had this when I was diagnosed 6 treatments. It's my only experience of chemo but really wasn't that bad Love Ann x
Thanks Ann, I'm hoping to steer through it as well as I did first line but I'm 7 years older and now have Bronchiectasis so will take extra care of myself. Hope you're well. Xx
Thanks. Yep, I look and feel well apart from the 'Biggies'. Hopefully this will give me a good foundation to tolerate treatment again. Hope you're well. Xx
You have such a well-balanced view on it, Sandra. You have done so well and it's 'only' third line!! Maybe see you down at the Christie. I am in for clinic and chemo 6 tomorrow. x
I have done well Christine and I keep refocusing on that when I have my 'moments'. I'm at the Christie tomorrow morning for my kidney function test and to choose my wig so I'll try to find you. Hope your fabulous ca125 halving has given you a boost. Xx
I have had a boost from that Sandra, but am so lethargic from the Cisplatin it's taken the edge off! I am bloods 1120, clinic 1220, chemo 2.00. In theory ....
Gorgeous photo, you look a million dollars despite facing 3rd line. I love your no nonsense attitude, way to go! Beautiful children too, you are blessed 🤗🤗
Thank-you, that's really kind. It took ages to take the photo - we just couldn't get the two little ones to pose together! Grandsons are fabulous, I'm truly blessed. Xx
Hi again! Chemo hadn't done the trick after the first three sessions, Onco suggested stopping as some had grown and had another new tumour but, as some were stable, we agreed I could continue for the last three, as I said I wasn't ready to give up. 😊 Xx 🤞
Fabulous photo, three beautiful boys and one very glamorous grandma. The wig service at Christies is really good, I got quite a nice one there. I also got a couple from Simply Wigs, fabulous on line service and a mind blowing number of wigs to choose from.
I hope this treatment does it’s job for you, you couldn’t be in better hands than the Christie, they’ll do their very best for you. I did my trial (ICON8) there, the world lead fellow on that particular trial is based there, he works alongside the prof so you have the top team fighting on your side.
Keep as well as you possibly can be during your treatment lovely and let us know how it goes. Hugs and love from a dull and blowy Lancashire ❤️Xx Jane
Ah thanks Jane. I really feel privileged to be under the care of the OC at Christies. And feel safe and supported. Yep I'm half a mile away from the border to south Lancs and it's definitely been a blowy one! Xx
Sorry to hear it's back to chemo but go for it and let it knock out all of those pesky oc cells. Lovely pic of you and grandkids. They certainly help to keep you going don't they?
I'm sorry you have to start 3rd line chemo, but like others, I hope it will reduce those nodules before they can cause real trouble. New plan: Let someone else open oven doors while wearing a wig .
Here"s to few/no side effects and a good result. Hugs, Maus.
Ah thanks Maus, yep certainly learnt my lesson with the oven! Have bought myself a Huff bandanna to wear around the house. It's really pretty but I look like c..p in it though!
Your picture reminds me of when my boys were little. They were so full of energy. My daughter was always quiet in comparison.
Will you be using a cold cap? I was reading about them the other day and didn’t realise that they are not terribly expensive yet not all units have one. The trial sounds interesting. I’ve not been able to twist any arms for PARP inhibitors despite trying to for years now. It’s Kathy’s journey that has kept up my interest in them. It’ll be wonderful if you can also have the same result.
Good luck with everything - you sound amazingly straightforward and have an attitude that will kick this out again..and yes The Christie is such a good hospital feeling safe is another good factor (may bump into you there!) all the very best T xxx
Will look out for you T. I've chosen a short silver bob wig so look a little different to normal. I look distinguished for the first time in my life! xx
Your report is contradictory and maybe that will work in your favor--your attitude and how good you look make me think (KNOW) you've got this! What a great photo---LOVE the boys and you. Wishing you luck and that its not too difficult. The PARP after would be great (either arm) so plans in place always help too. oxox Judy
Beautiful photo ! Just want to wish you all the best. I will more than likely be joining you on that Carbo/Taxol train in Oct as now on watch,and wait until scan on 2oct . The journey is getting all too familiar but it does beat the alternative ! Take care.
Sandra, Reading through your post and all the replies I cannot be but uplifted by the positive attitude of everyone. Love the pic! I'm a grandma too and they are whom I live for. Struggling now with first recurrence after only 4 months remission on caylex/(Doxil) Avastin and having a really hard time....lots of dark thoughts. As you said, kick 'em to kingdom come! Hugs from Seattle USA
I went for treatment number 2 on Thursday but my platelets were too low. That never happened to me during first line chemo. I’m hoping I’ll be okay to get it on Tuesday.🤞
Thanks Carole. I'm still on chemo at the moment - just done dose 5 of 6. Unfortunately I can't get on the Icon9 trial because it's for 1st occurrence only but almost certain to get on Niraparib and possibly an Olaparib Trial if I can swap some other meds I'm on for a lung condition. My ca125 is walloping down each dose from 3000 but unlikely to be below normal at the finish line but at least chemo seems to be working.
Oh yes, I'm looking forward to Christmas with the boys. We've booked to go on the Santa Express Train with them on Christmas Eve, so that should be special.
Sorry to hear you have recurred Sandra but your in good hands at the Christie and sounds like your nearing the end of your chemo now. Love the photo, I imagine the boys have helped spur you on through the horrible treatment. Glad you have some nice things planned with them over Xmas once all your treatment is finished. Santa express sounds lovely! 🎅 🚂 🌲 ⛄️ Good luck with your last chemo. Jo xx
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3rd line treatment in less than 2 years!
Ready to go here I come OCTOPUS Trial
cruise here I come
Venice here I come!
