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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Well, a long day but they gave me my rads tattoo in am and zap late pm. So at least all done in one day. Feeling tired now and not looking forward to the possible increase in pain for couple days. But hopefully it might then improve pain. At least that's what I hope.
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Re: October 2017 Chemo Starters

Jencat

i have read your post when I was first diagnosed as TN and think you may have had messaged me at some point. I am sorry to hear about your recent news but would echo what Shi said about considering trials. Prof Schmidt at Barts is always running some and he is a specialist in that field and i’ve heard some people have had good responses. Worth exploring.... 

wishing you all the best and fingers crossed for you and that you have a good and productive consultation today

Hugs

Aurore

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Re: October 2017 Chemo Starters

👭❤️ For this afternoon Jencat. Also see if there are any trials you can get on Jencat get your daughters to google trials and then bring up with your onc, there are new trials happening all the time as they develop new treatments ❤️ Worth trying ❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Jencat, likely they'll put you on zometa/zoladronic acid to help bones. I have the infusion every three months. Other than that I was just on Letrozole until that stopped working. Mine is aggressive though and ladies stay for years and years with bone mets. Bone mets won't kill you. It might progress but they have a vast canon of armoury, mines for ER+. Good luck today and let us know results. I felt much better with a plan in place..💗💗💗🏄‍♀️🧜‍♀️🤿🐧💗💗💗
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Re: October 2017 Chemo Starters

Thank you for the info buddyfan x

Got my oncologist appointment this afternoon, which my daughter's are feeling positive about because we'll get a treatment plan, but I'm dreading it. I think at the moment I'm a bit in denial and I think today's appointment will bring home to me that I can't be cured this time, even although the spread is so tiny x

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Re: October 2017 Chemo Starters

Hi Buddyfan,

 

we can always blame chemo brain, even 2 years on 🤯🤣🤣

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Re: October 2017 Chemo Starters

oops, my radio wasn't to sternum it was to sacrum! And I've only just started the chemo pills so can't blame chemo brain.
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Re: October 2017 Chemo Starters

Jencat, I was given a one dose radio zap to sternum because they noticed it there and didn't want it affecting nerves. Keep tabs on your ALP in your blood tests. Although it can mean other things, it also can mean bone activity, eg bone mets. Mine dramatically rose from normal 124 last August to 357 now. It was in 58 in Aug '18, but I think breaking my arm would have also raised it. Norm is 30-130. I guess it probably goes up on Zometa as well.
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Re: October 2017 Chemo Starters

 

Hi Buddyfan

 

Just been scrolling back through the forum and just wanted to say how sorry I was to hear about your bone mets too and to wish you all the very very best with the treatment. It must be a very worrying time but it sounds like your team are on it. Keeping everything crossed that the chemo side effects won’t be too bad for you. 

 

Take care and keep your chin up

 

Cherry Bakewell 🍒 xx

 

 

 

 

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Re: October 2017 Chemo Starters

Hi Jencat

 

Long time no speak!! I only visit the forum once in a blue moon now but I just wanted to say how sorry I was to hear that they’ve found a little spread - but as you say it sounds like the very best of bad news and that they’ll soon be able to zap it. At least you know where you stand now. As we all know only too well, it’s the uncertainty and the waiting for scan results that is the absolute worst. 

 

Anyway, hope you’re managing to keep perky. Take care of yourself.

 

Cherry Bakewell 🍒 xx

 

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Re: October 2017 Chemo Starters

I received the best of bad news on Tuesday. I was convinced the BC had spread after the 3D bone scan the previous week and I thought probably my spine as that was the area being looked at. I have got a spread, but is contained in one small spot in my sternum-got the impression it might be only mm's. BC nurse seemed to think it would shrink/disappear with treatment, hopefully she's right. Seeing the onc on Monday for a treatment plan.(The app was going to be in a couple of weeks, but ED made a bit of a fuss and said the past 6 weeks were taking it's toll on me) xx

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Re: October 2017 Chemo Starters

Hi buddyfan, I sent that message to you before it was finished and not making sense! Now I seem to keep losing my messages! What I meant to say was, hopefully the bone mets will soon shrink with the treatment and so glad your wheeziness isn't anything serious xx

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Re: October 2017 Chemo Starters

Hi buddy fan, thank you so much for asking after me x I'm staying with my friend for a few days, although ended coming a day later than I intendedas I felt so tired and now I've got a cold-I think it's the stress of the past few weeks.

Sorry to hear that you've got more bone mets, thopefully good your fear that it had gone to your lungs were unfounded.

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Re: October 2017 Chemo Starters

Hi Buddyfan,

 

Sorry to hear you’re lighting up like a Christmas tree but Good news that it’s not spread further than the bone mets. Hopefully the rads and chemo pills will keep it under control and improve things for you. What SEs do you get with the chemo 💊 surely they can’t be as bad as what we went through with chemo? Hopefully no 🏄🏻‍♀️ 🏄🏻‍♀️ and 🚂 🚂 

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Re: October 2017 Chemo Starters

Rads should be next week apparently. But just one shot.
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Re: October 2017 Chemo Starters

Hi buddyfan ❤️ Glad to hear no further spread even if you are our Christmas tree  on the bone front. Hope the rads on spine zap the tree lights to pieces, when are you starting rads? And 🤞all ok on the chemo pill and you get on with it ok ❤️ Hope your mil’s dialysis goes well for her too. ❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Good news is that it's still only in bones none in lungs or other soft tissue. But bones must have lit up like Christmas tree, some in skull, hips, top of legs and more in spine. So got to have radio to spine, hopefully to help that pain and starting chemo drug straight away. Well it would've been straight away if we had remembered to go back to the pharmacy to pick it up. Fortunately my mil goes into dialysis tomorrow so they'll pick it up. I expect another day won't kill me. 😒
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Re: October 2017 Chemo Starters

Hi buddyfan hope you got on ok today ❤️  I think jencats having a weekend away with her family ❤️ I’m sure she’ll pop on to see how you’ve got on today ❤️ 💕💕Shi xx

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Re: October 2017 Chemo Starters

Just waiting to go onto clinic for review. Has anyone heard from Jencat.
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Re: October 2017 Chemo Starters

❤️👭❤️for tomorrow buddyfan 😘💕💕Shi xx

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Re: October 2017 Chemo Starters

Buddyfan,

 

wishing you well for your appointment tomorrow I will be thinking of you 😘😘

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Re: October 2017 Chemo Starters

Jencat,

 

Thinking of you today, sending hugs 😘😘 

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Re: October 2017 Chemo Starters

Buddyfan and jencat thinking of you loads xx 

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Re: October 2017 Chemo Starters

👭❤️For tomorrow Jencat and 👭❤️For Friday buddyfan 💪💪💪💕💕Shi xx

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Re: October 2017 Chemo Starters

Jencat, Good luck tomorrow. 💗🧜‍♀️🏄‍♀️🤿🐧💗 I will be thinking of you. Mine is on Friday. I'm trying to convince myself that my wheezing is more the structure of my lungs than spread to lungs. My back feels like it is collapsing so I think my lungs might be a little scrunched. The antibiotics haven't helped so it's not an infection. But in the morning, when my body has relaxed overnight, my breathing is much better. I reason that if I had cancer there it would be permanent. So many worries so I know how you're feeling.
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Re: October 2017 Chemo Starters

We had a trip out to Harry Potter world was supposed to be returning at 4 but they didn’t get back until 5 because of traffic 

the parents were moaning loads the trip was delayed coming back but the trip was totally free as it was a reward trip no pleading some people x 

 

hope you are managing to stay positive xx

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Re: October 2017 Chemo Starters

The farm was good Sue and a nice distraction Smiley Happy Only problem was there was an accident on the motorway, so instead of a 20 minute bus journey back to school it took an hour and a half! Great fun with a lot of noisy children! I thought they'd have been more tired after a busy day! Smiley Happy x

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Re: October 2017 Chemo Starters

Hope the farm was a distraction for you jencat x 

 

buddyfan sounds like they don’t know their ars* from their elbow I honestly thought now everything was computerised the info would be available 

bug hugs to you and you so rock them gold pants x 

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Re: October 2017 Chemo Starters

Morning lovemama, thank you for taking the time to send me such a reassuring message. Really good to hear that things that lit up on your scan didn't end up being sinister. It wasn't my consultant that asked for the 3D scan after the bone scan, it was the person checking the bone scan pictures who said she wanted a closer look at my spine/chest area because there was a 'funny bone' that needed a closer look at. 

I have got a meeting on the 11th to get my results, an appointment I'm dreading in case I get news I don't want to hear! 

You're right about the sleeping and eating, but I'm finding both difficult at the moment. I'm helping on a school trip to a farm today, so perhaps sleeping will be easier today! xx

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Re: October 2017 Chemo Starters

Sorry you had such a palaver at the hospital yesterday buddyfan! Hope you're wrong about the spread of bone mets and the antibiotics make a difference to your cough. Thank you for your support xx 

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Re: October 2017 Chemo Starters

Blooming heck buddyfan, you’ve been pulling the whole blooming train with those worlds strongest men being left in the dust 😳what a day bet you were 🤬🤬🤬 think you should complain to pals and take it higher, you should not have to run around like that, the nhs are there to do that. Hope you get on better tomorrow. I can see you giving short shrift if you get mucked about tomorrow. Sending big ❤️❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Just realised my b****y typing isn't putting the paragraphs in. Sorry ladies.
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Re: October 2017 Chemo Starters

Well, the scan today was the simplest bit. What was a complete pain is that I got a call from Oncologica, who I've requested to do more tests, to say that WestSuffolkHosp seem to be to only hospital they've dealt with who won't release my hystology reports, despite Oncologica presenting WSH with my signed confirmation request. NO! WSH want me to sign their forms, present scans of my passport and driver's licence and then they'll put my records on an encrypted disc. Ffs, who still uses discs! Haven't they heard of encrypted emails and files. AND that could take 30 days. 30 b****y days. I haven't got time for 30 days. So, I spent a lot of time running around the hospital to oncology, records and then back to oncology. I asked to see my oncology nurse and she said she'll sort something out. Thank goodness for common sense. Still going to do all the above so that their records are ok. Back to WSH to have Zometa tomorrow. It's been non stop this week. 3 days at WSH. I pretty much know I've got more bone mets in my spine from the pain. Mainly more worried about the wheezing. So today I also made a gp apt. They gave me antibiotics to try in case it is an infection because I thought if it is an infection, I should get shot of it before I start the chemo pill. As well, if it doesn't work, then I've only got one day to worry about it before my review says yay or nay. Right off to scan all these bits. Jencat, it sounds like you're on a slightly more even keel. I'll be with you all the way next week. Think of me surfing the train in gold pants. 💗🏄‍♀️🤿🧜‍♀️🐧💗
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Re: October 2017 Chemo Starters

Hello Jencat, in Oct 2018, I was dx bone met to my sternum. On my bone scan, it showed a lit up on my sternum. On my CT scan, the radiologist made a comment something like that "1cm disruptive tissue at both vertexes of a lesion on my sternum and this co??? with metastasis".

In Jun 19,  on my most current bone scan , it showed a lit up in my rib bone and the head of my spine in my neck. On the CT scan 1 week following the bone scan showed 'nothing'. I told my onco there was an injury to my rib 2 days before bone scan. My onco then said the area might be healing and we would see in further scans. For the lit up in my neck was mostly arthritis. In both the Sep and Dec CT scans did not show anything in the two areas. In my file I saw  my onco had put 'injury' and 'Fibroxxx' for that bone scan.

Though your CT scan result most probably is ready (usually 5 days in CAN), I guess your consultant (no such position in Canada) may not have a chance to look at your CT scan and his request for another scan is simply due to a doubt basing on your bone scan. 

Though I understand your anxiety, I think you may be a bit early to guess if it is bone met,  8-) even before your team's review 8-) I am thinking  may be you can try to eat healthy, sleep well  to prepare for the treatment. Love  

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Re: October 2017 Chemo Starters

Hope your scan went ok today buddyfan x

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Re: October 2017 Chemo Starters

🤞for your scan buddyfan 😘
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Re: October 2017 Chemo Starters

Hugs Jencat x The scans are done, treat yourself to some nice things over the next week and stay away from Dr Google. Hopefully this is a local recurrence but if there is spread it will have been found quickly and treatment is getting better all the time. We really feel for you and are here for you 😘
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Re: October 2017 Chemo Starters

Hi buddyfan hope you are done and on way home now 👭 💕💕shi xx

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Re: October 2017 Chemo Starters

They're normally so good at west Suffolk hosp but still waiting for my nuclear injection. Apt at 9:30 and nuclear stuff has only just turned up.
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Re: October 2017 Chemo Starters

Thank you Whytefawn and Shi xx Love to all the Oct'17 girls xx

Thank you daisydi for taking the time to message me and for your reassurance x You're right, there could be other explanations why the 3D scan was needed, but I've managed to convince myself that the news next Tuesday isn't going to be good x

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Re: October 2017 Chemo Starters

Hi Jencat. Sorry the scan experience wasnt very nice. We're all here for you Jencat. Xx
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Re: October 2017 Chemo Starters

Jencat a nuclear medicine bone scan is very non specific.  It identifies bone activity but cant distinguish between things so sometimes they just need more information to make a proper diagnosis.  Try not to worry yourself too much, easier said than done I know x

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Re: October 2017 Chemo Starters

Hi Jencat when do you get results from all your scans you’ve had last week and this week? It’s good you bumped into your bc nurse, they have seen it all before so I hope you took a bit of comfort from that. Please ring the number on this site tomorrow there will be someone who will be able to speak to you with more informative reassurance ❤️We can only hold onto you gold hot pants and be an ear for you 👭 everyone sends their ❤️❤️To you and the girls 💕💕shi xx

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Re: October 2017 Chemo Starters

Thank you for all your good wishes x The scan was horrible! I've got a feeling the cancer might have spread as they also did a 3D scan on my chest/spine area as the consultant wanted to have a closer look at a 'funny bone'. The girl doing the scanning did say that this is often done and it doesn't necessarily mean it's cancer, it could be arthritis etc, but I'm not so sure! She also said that the consultant checking the scan is very through.

Fortunately because it's World Cancer Day, Macmillan had things going on and I bumped into my BC nurse and explained what had happened and had a long chat with her and she was very reassuring. She did say perhaps the 3D was taken because I moved, but I said I didn't think I had! She didn't give so much of an explanation after I'd said that. She said I will definitely be having a mastectomy, but it depends on the results whether it will be before or after chemo. If it has spread, she said I'd be on chemo tablets afterwards and said that she's known women to be on them for years. I'm not sure if that's right, but YD said the nurse should know more than me! As you can imagine, I'm anxious and feeling that the cancer must have spread xx

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Re: October 2017 Chemo Starters

Buddyfan

 

Good luck for tomorrow. 

 

Helena xx

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Re: October 2017 Chemo Starters

Jencat

 

Hope it all went well today sending you hugs to go with the big pants xxx

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Re: October 2017 Chemo Starters

Hi jencat 

how you doing today hope it wasn’t too scary xx 

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Re: October 2017 Chemo Starters

Thinking of you today Jencat. Hope it all goes well. 

 

Susie B xx

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Re: October 2017 Chemo Starters

Thank you all for your good wishes xx Just off to the hospital 😞 Thank you for holding onto my gold hot pants and hope lady bowlers big knickers are on there way! xx

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Re: October 2017 Chemo Starters

Jencat, the bone scan is just like the others. Just a bigger gap in between the injection and scan. Go and have a lovely coffee and cake. Don't expect them to say anything because they shouldn't. Mine's on Wednesday. 💗💗💗🏄‍♀️🧜‍♀️🐧