Carolyn, sorry to read hubby is bad again - he's being put through the mill lately! Hope he is better soon.
Yes, bonariensis, the CT scan appointment arrived in the post yesterday. If it hadn't come I was going to ring my Oncs secretary on Monday. As it happens, I will still ring her to ask for a copy of the report from my last Onc appointment. She is supposed to send me a copy every time, but she usually forgets. It's so annoying as I have to ring each time. The CT scan is for Friday, 11th Nov, so still some time, but it means I will have to wait ages for thevresults again, I expect.
Re.the fire - will check out Arty Stuff thread!
Hi Racer Waiting seems to be a big part of all of this whether at the clinic or for results. How can i say try not to worry. All i can say is distract yourself with as many good things as you can and take each day, each hour at a time. B xx
Hi Racer, you poor thing. I hope everything works out.
sounds as if you are very brave too, my word!
yes i think honesty with the kids is best, they can cope with it generally.
lots of love
We were so lucky to be spared the Cathedral and the close during the war. Not for want of trying, though! We also lost so much the the planners that could have been saved - Bedford Circus was supposed to have been lovely. Apparently it could easily have been saved as it wasn't that badly damaged. City planners have so much to answer for, although Exeter didn't suffer quite so much as Plymouth - so ugly now (in my opinion - hope I don't offend any Plymothians on here!).
Hugs to all. Barton.x
Ps - sorry to turn this into a news/architectural thread!
Yes it's sad. The cathedral close is the heart of Exeter, particularly as so much of the old city disappeared in WW2.
Yes, Carolyn - so sad about The Royal Clarence! I think they recently did it up, too! The insurance claim is going to be horrendous! The shape of Exeter city centre has now changed forever - even if they rebuild to the same look out front, everyone will know it's fake. Was going up town this morning, but someone told me all the buses are stopping near the parcel office - too long a walk in each direction for me, so have postponed visit. Nothing urgent wanted, luckily.
hope things feel brighter and you have a peaceful werkend.
suskak, Natalie has a point..I used to come away from the dr thinking ooh, forgot to ask that! Now i note stuff on the ipad and just hand it over...my writing is very poor!
Waffles....am still not that oh fey with the meanings of. The two types of mets, but lovely onc. Said it was good that more were now sclerotic. So I have to trust him on thatxxx
I dont get a lot of bone pain, apart from my ribs, one apparently has a fracture which might be due to metastases or radiation...anyway they can be painful and catch me out. My knees are both past their sell by date, but thats not new!
Bernie, sorry to hear about yor scan results but keeping everything crossed that your clear everywhere else.
cant really add to what the others have said.....we are all here for you. x
Hi Bernie, Sorry that you have to be here but you'll have seen that you are not on your own and that there is a lot to hope for. My children are older but it was still hard telling them, particularly my daughter who suffers with depression from time to time. But she was supportive, did a lot of googling and told me things I ought to know. Around the time of diagnosis there was only so much googling I could cope with at once. We manage to look after each other. I hope you have finished with bad news for the time being. Enjoy tomorrow with your daughter. B xx
Yes Bernie and Jule, my onc said they were initially lytic but now sclerotic. He says sclerotic better as bones stronger.l an apparent improvement whilst on zo eta!
i promised Waffles. Id ask.. And the onc went off to look at my last ct. which apparently showed the change.
he initially was thrown at my question, but i told him we were all ganging up on the oncs and wanted to know. He was fine about it...I like my onc very much.
well done Waffles!
Bernie, im not a mum, but I do know from others that children hate having info kept from them, so maybe we worry too much about protecting them? Recently the converse happened, a friends daughter didnt tell him she was expecting her second child, when he was dying....she now regrets he didnt know he was going to be a grabddad again...maybe tne communication between parent and child has value xx
Bernie, just adding my welcome to everyone elses. Sorry you have had to join us, but you seem to have found the right thread! Everyone here is very welcoming, and you can come here to rant at any time, and someone will be along shortly with tea and bisciuts (virtual, I'm afraid), and plenty of sympathy and good advice. There are many very wise and knowledgeable ladies here.
Good luck, and best wishes.
Hello Janette. Re the flavoured drink before a CT scan - I have only had this once, just before my first CT scan, I think. All other times I just get the IV iodine (the one that makes everything feel abnormally warm as it goes in and makes you wonder if you have wet yourself!). There was once when I didn't have the IV iodine, and that was because I had high levels of something in my blood (bilirubin? Createnine?). They just did the scan without any contrast then. I have to say, I really didn't enjoy the drink, so not sad I haven't had it any more..
Hi Bernie, welcome to the forum, sorry you have had to join us but we are a friendly bunch and are always on hand to help / advice.
My most effected area is also my hip, I have mets in hips and ribs also. I was on tamoxifen initially after dx in 2014 but was switched to letrozole Oct last year, I have responded really well on this and lead a relatively "normal" life. We all understand the need to protect our sons/daughters from the worry of this disease but once you tell them it's surprising how understanding and strong they are about it, just tell her in your own time when you feel ready.
Thanks for the info on different types of mets, I've wrote them down for my Q & A next week when I see her for my CT results......I always go armed with questions for her!
Stresshead, I also have the canular injection for contrast as well as the drink......my organs must be glowing in that CT!!!!
Hugs Janette xxxx
Sorry you are having to join us but welcome. I hope you hear from your BCN early thisafternoon, the waiting is horrid isn't it. I would imagine that they will change your hormonal (Tamoxifen) to a different one maybe Letrozole, depending on if you are post menopausal. I hope you have lovely time with your daughter for her birthday and am sure you'll manage your brave smiley face. I think you are right to wait till she is home and you have more information and have had time to get a bit more used to the idea. You will be better placed to talk about it then - good luck!
Maria Louise, try not to worry too much, Oncs know that treatments sometimes take a while to kick in and they look at blood results, how you are feeling etc in addition to scans, I think it unnlikely they would change your treatment after the first scan. Hope the liver is just a random pain. Keep us up to date won't you.
Carolyne. once I'd been stable for a bit my Onc started to see me and scan me less frequently, so you could see it as a good sign. I'm every six months. My Onc has suggested I go to yearly! I didn't like the idea so at the moment am staying six monthly.
Re the different types of bone mets, I think lytic is where the cancer leads to a breakdown of bone without new bone being made so a kind of lacy/hole effect whic weakens the bone.Sclerotic is new bone being made without the breakdown of old bone first, which makes the bones become abnormally hard but weak. After radiotherapy and other treatments lytic bones can look more sclerotic as the healing/building process has made more bone calcifaction form. Simplictically that's how I understand it but others may have a better answer.
Hello to Bernie and Maria Louise...sorry you have had to join us but you are very welcome. Bernie, i know what you mean about teling your daughter. I think for all of us that is the worst agony. I have always had a policy that i never lie to my daughter and if she asks something she is always told the truth (although i do try be be lighthearted about it all). It will be a great strain on you not to tell her for a while but you will manage it. I didnt tell my daughter that i had had a scan this time round so she wasnt aware i had a results appointment. When i told her she said 'why didnt you tell me you were having your scan'? i think sometimes we try to protect them so much we dont actually reaslise how strong they are.
Re: type of bone mets...i have checked back on my letters and 'sclerotic' is mentioned so i assume thats what i've got??
Also very interested to hear about the aniseedy drink instead of iv contrast...or have i got that wrong?
If there is an alternative to having to have a cannula i'm all for it.
I know when i first had scans i had to drink water with iodine in it but now its just plain water. seems they discovered it was making no difference??
Love to all. xx
Hi Julie, Thank you for your response, my worry is that when I have my first scan since starting Zometa/Tamoxifen it won't have had enough time to kick and start working properly and that they may decide to change treatment straight away. The pain in liver area is more of an ache really so fingers crossed xx
Carolyn - Thank you for being there whilst you can't always answer the questions a quick response for you is always good, its shows that someone is always there and cares 🙂
Janette - Thank you for your reply ie, Tattoo, I have in mind a small one that i would like doing and I wasn't sure how to go about it but it seems like it should be ok to go ahead.
Hope everyone else is ok this morning, it feels very crisp here today, a hot chocolate day :). xx
Sorry you have had to join us but welcome. This is the best thread to be on as it is the most active. Everyone will be along to give you support. We all mainly take Denosumab with calcium tablets along with treatment for the tumours. I have had bone mets in many places and manage them quite well I am nearly 4 years now with treatment. There lots of ladies who have lived a long time with bone mets one 20+ years My phylosophy is I am living with Cancer not dying from it.
All the best love and (((hugs))) xxx
Hi Bernie, I'm so sorry you are back here under these circumstances but there are so many lovely ladies here with bone mets who can advise , help and support you and as you will find many are years down the line from secondary diagnosis, the thought of dropping this on our children is just heartbreaking , it was the worst thing for me but they do you proud and cope with it, sending you lots of love Xx Jo
Welcome Bernie! Great place to receive support and rant if you need. We share good and bad news. I'm sure you will receive many welcomes. FF
Never had that Nicky,
i have it i/v but have to drink 2 litres of water first...or is that the bone scan?
also, ladies, I DID ask the onc what type of bone mets ive got? I know theres another thread on this, but any way he said that initially, i had mainly lytic but now they have become maily sclerotic, so thats better for me!
Hi Marirose, no its an aniseedy flavoured clear drink, I've been having it since I started having my CT scans over 2 yrs ago??? Very odd, please someone jump on board and tell me you have the same!!!😮😮
Is the drink milky white I used to have one before the scan and then the contrast injection in the scan. But they stopped doing it they said it was unnecessary and they stopped doing it at both the hospitals I had the scan including a mobile one that helps out at my hospital. But if it was Christies I would certainly trust them.
You got us all confused or maybe they have alot left over and want to use it up lol
Carolyn enjoy your car maybe you will give driving it a go you never know you may find it easy. Then have car will travel but then if you live so near good shops you don't need the car only to carry home the goods.
Love and (((hugs))) to all xxx
Hhmm now I'm also confused 😞iv always had to drink the iodine drink slowly over an hour before my scan then I have the canular injection done, doesn't everybody have this????
Carolyn. I'm impressed. flabergasted even. It's what comes of living near all those car dealerships. Hope it lives up to your expectations and is comfortable to sit in. They rarely talk about anything like that in car reviews.
Moijan, Carolyn, think I misled you, I also have to have the canular injection for the contrast......hey I don't get away with it that easily!!!!
Maria Louise, regarding my tattoo no I didn't do anything to prepare or check with my onc first, oops maybe I should have, never even gave that a thought!
Hugs Janette xxxx
The Zometa should start to work straight away but you may not see much evidence of this till first or second scan after it's started. Pain can be a sign of healing
The Tamoxifen should kick in in about 4 to 6 weeks. I'm on a similar regime to you but am on Letrozole rather than Tamoxifen (I had Tamoxfan for primary) and so far the treatment has kept me stable for six years
Hope this has helped and you feel a little happier. xx