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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Thinking of you tomorrow Jencat. I had a bone scan before chemo it was fine. Biggest problem is laying still while it takes the pictures. Let us know how you get on xx
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Re: October 2017 Chemo Starters

Jencat 👭for tomorrow’s bone scan ❤️❤️ Glad you’ve sorted out the ct scan error, everything sends you into orbit, it’s natural ❤️ Ladybowlers big pants are flapping for you and the rest of us have firm grip on your gold hot pants ❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Hi Jencat,

you had a bone scan before ?

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Re: October 2017 Chemo Starters

Thank you buddyfan and lovemama for your helpful emails. I phoned the CT scan dept this morning and the CT scan this Friday was a mistake! Like my cousin, who was a nurse had said, because last weeks scan had been arranged verbally over the phone I hadn't been taken out of the system! Logically I thought that was probably the case, but there was still a part of me that wasn't sure!

I've got my bone scan tomorrow, which I'm feeling very anxious about! To the point today where I didn't 'feel right'-my legs felt like jelly and my head had a tightness around the back. I was beginning to think that perhaps something was seriously wrong as I've felt a bit like it all weekend, but I think it started actually when I received the letter on Saturday about the scan, so I think it's probably stress and I'm on heightened alert at the moment about everything and have been for quite a while now+add to the mix lack of sleep and not eating properly! I don't feel so bad this evening, I'm trying to distract myself a bit! I need lady bowlers gold pants and big knickers for tomorrow though! xx

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Re: October 2017 Chemo Starters

A typo in my previous post, IORT is for lumpectomy incision. 

 

https://www.cancercenter.com/cancer-types/breast-cancer/treatments/radiation-therapy

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Re: October 2017 Chemo Starters

Jencat, I found my first lump in July '17. At that time my back was only debilitating after couple hours gardening or such like. When I got confirmation of cancer, plans for lumpectomy and chemo I think the stress sent my back into spasm. So when I started chemo my back was pretty bad. Because, it didn't seem to get substantially better during chemo, they did more scans. Found an unhealed fracture in the middle of my back, who knows from how long ago. Did an mri and confirmed I had mets to me day after Christmas. I haven't had this recent sort of pain before. It's not like an ache from doing too much work or even a spasm pain, just a multiple pin prick sort of pain where the mets are. I've also got a bit in sacrum now one on iliac but no pain from them. I think a lot of my pain is from my poor back posture. After 40 years of no nerves to part of my back I now have Scoliosis as well as a knackered neck from the accident. So, generally I've always had pain in my back and neck, but usually lower back or between shoulder blades not in the middle. I wonder if the mets pick on weak areas, my mets are near my unhealed fracture. I think the alp marker in your bloods can indicate increased bone activity, eg broken bones, mets etc. Mine is high atm. Re your scan, just ring ct appointments to confirm which scan it is. If it's CT, ring your oncologist or specialist nurse to sort out. I've often rung them.
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Re: October 2017 Chemo Starters

Hello Jencat, I am just wondering if you can clarify with your onco (not sure, or  your consultant) re the arrangement of CT scan. (I live in Canada) In Canada, only the doctor can order the CT scan. In my case, my first CT scan was ordered by my GP and it covered only my chest area. After I was referred to cancer clinic, my onco immediately ordered another full body (including head) with dye contrast CT scan for me. So, my personal view this is only a mistake if the same doctor had ordered it. My understanding the dr usually order other scans like PET scan, MRI if any doubt.

Besides, In this couple weeks waiting time, you may like to take some study if there is any trial may be suitable for you. (CT7001? immunutherapy ? plasmaMATCH ? etc. My understanding most of the trial is only available for 1st time treatment after diagnosis. If chemo is required, you may not be able to get the same regime as last time, within 2 years. Furthermore, you may also want to ask your surgeon if you can be offered IORT (?? radiate to the tumor bed during surgery??)  during mastectomy surgery.

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/clinical-trials-search?populate=...

Finally, wish you all the best in your scans and sorry for the popping in. love, MelMel

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Re: October 2017 Chemo Starters

I've got the bumph for both buddyfan. The CT scan last Wednesday was arranged over the phone, so I was told verbally and got given bone scan info when I picked up the letter myself after the CT scan. Yesterday's CT scan letter for next Friday contained all the info with it. I'm hoping there's been a mistake and I've not been taken out of the system! Two nurses have told me that they're sure that's the case. Why would I have the same scan twice, surely if there was a problem they'd want a different scan?

I hope you don't mind me asking, but did you have bone pain before you were diagnosed or did a scan pick it up? The trouble is I'm 60 now, so bound to have some aches and pains, especially if I've been bending over the computer for too long! x

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Re: October 2017 Chemo Starters

My neuropathic pain is in my long time ago injured left arm. The nerves were pulled from the spine so I get neuropathic pain in my hand. Have done for years. The pain I feel from (I think) my mets in spine is very different, like a very bad nettle sting so bearable compared to neuropathic pain. Jencat, just double check they are geared up for the correct scan. You should have received the bumph telling you which one it is.
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Re: October 2017 Chemo Starters

Hi Shi, the normal meds I take for my neuropathic pain seem to take that bone cancer pain away. It just that horrible reminder when it does appear rather than the actual pain.
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Re: October 2017 Chemo Starters

Hi buddyfan, so sorry that you're struggling too and in pain and I can understand how worrying that must be for you. Is your neuropathic pain in your spine too? That's strange that it is more painful than the cancer, I'd have thought it would have been the other way round. I suppose that what makes it so difficult, our minds automatically think bone pain is mets, when it could be wear and tear etc. Hopefully your bone pain today will be something like that.

Hopefully too your wheeziness is just caused by the time of year and there being lots of germs about. 

Hope your review goes well on the 14th and your fears will be unfounded.

Thank you too about the reassurance of bone mets xx

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Re: October 2017 Chemo Starters

Hi buddyfan, thank you very much for taking the time to send me a message and for your reassurance x

Yes, I've had a bone scan before I had chemo-the radiologist was very kind and took pity on me and told me after the scan that everything was fine! I went to give her a hug and she said don't do that, they'll know I've told you! Had several CT scans before and as you say, I wasn't told anything, so I don't know why I thought the one last Wednesday would be any different!

Gave myself a bit of a talking to and told myself it was the weekend and nothing regarding the hospital would happen today! I was wrong! When the post came there was a letter for a CT scan next Friday! Phoned up CT Dept, but of course it was closed being a Saturday! As you can imagine, I got myself into a panic, even phoned ED in Crotia! The letter is dated the day after my CT scan, so of course my immediate reaction was something must have been seen and my anxiety was made worse because I did receive two Private Number phone calls on Thursday. However, thinking logically no message was left, ED wasn't phoned and I'd phoned BCN to see if it was them who'd phoned and it wasn't. So if I was meant to have this scan, then they would have known about it then or phoned yesterday. Also, why would they do the same scan twice?! Plus the scan is for Friday and BCN had said both scans have to be done by Thursday at latest for MDT meeting next Monday. Then I phoned my cousin who is a nurse, who said because my CT scan was arranged verbally over the phone, the people who arrange the appointments would probably not know this, so sent out a standard letter. (ED's friend who is also a nurse said the same) Hope they're right! xx

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Re: October 2017 Chemo Starters

Hi buddyfan ❤️ Hope your scan next week goes well ❤️ Can your team give you anything to dull the pain in your back buddyfan? I hope they can 😘 💕💕shi xx

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Re: October 2017 Chemo Starters

Hi Jencat, hang on in there. I know exactly how you're feeling atm. I'm wheezy so I've convinced myself it's gone to lungs. This morning I was woken up by the cancer pain in my spine. It's a totally different (and not as bad) pain as my neuropathic pain but has totally scared me. The cancer has damaged my back so it is debilitating but I don't normally feel that cancer pain. So it all adds up to being paranoid. I've got the bone scan next week and review on 14th. I don't worry about the scans. That's just part of the process. Don't bother asking them anything. It takes a multiple discipline team to analyse your results and path forward. Have you had the bone scan before? I guess you're having the same one as me. Mine is the one that they inject the radioactive stuff in and then you have to go off for 2 or 3 hours to let it seep into the bones. It's no big deal, just time consuming. Even if it has gone to the bones, you can live with that. It's not a killer. Thinking of you. Kxx
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Re: October 2017 Chemo Starters

Hi Jencat

 

I'm so sorry you've been messed around. It's awful that you now have to wait even longer before you get any results through. Being TNBC myself I am very much aware of the chances of recurrence so knowing that bone and CT scans can be performed in that order on the same day is of immense help. 

Sending you virtual hugs ❤❤❤❤❤ 

Susie B xx

 

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Re: October 2017 Chemo Starters

Jencat ❤️ Please use the phone number on here and the someone like me option too. You know the team can’t tell you anything, we know you want answers there and then because you just want to know. Sorry they mucked up the way round your scans have taken place which puts you into next week for other ones. It is good they are being thorough you are being looked after Jencat ❤️💕💕shi xx
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Re: October 2017 Chemo Starters

Jencat I am sending all the positive vibes I possibly can and thinking of you loads 

 

try not to let the worry monster nibble away at how far you have come 

 

you, your daughters and us will stand strong together lots of love and the biggest hugs 

 

I wish you wasn’t so far away so I could deliver the hug in person xxxx

 

 

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Re: October 2017 Chemo Starters

Thank you Chaffinch x Think I'm just over-thinking everything and analysing every ache and pain and then worrying that I might have got cancer in places where I don't have any symptoms! x

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Re: October 2017 Chemo Starters

Sending hugs Jencat, stay strong we’re here for you. We all understand how hard the waiting is try not to jump to conclusions I know it’s easier said than done. They have caught you early and will be fighting for you. Great to hear BC team are helping out and bring supportive 😘
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Re: October 2017 Chemo Starters

Thank you Oct'17 and Feb'19 girls for being in the gold hot pants with me and Helena for the bloomers! Smiley Happy Had a call about the bone scan on the way to the hospital for CT scan! They can't do it until next Tuesday, the day I'm meant to be getting the results, I'm meant to have it tomorrow at the latest! Phoned up BC nurse and she said she'd see what she could do and then phoned me back to say I couldn't have scan tomorrow because of the dye in the CT scan! When I mentioned it at the CT dept they said it would be ok if the scans were the other way round, so they phoned bone scan dept, but unfortunately they hadn't got any free slots! This means I won't get results until 11th Feb! BC nurse assured me that a week won't make any difference to treatment plan and that if I'm having op, it won't be delayed. However, as you can imagine, it does have an impact on myself and my girls mentally! ED is not happy that there seems to have been a bit of mis-communication between the departments!

Overthinking the CT scan! Staff there were really friendly, but I didn't think they were quite as much after the scan had finished! I did ask one of the radiologers about the pictures and he said they can only see a few and there's a couple of thousand-I thought he looked a bit shifty when he said it, so now I'm thinking perhaps they've seen something on the scan! I know from previous scans that they can't tell me anything, so not sure why I think today would be any different! xx

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Re: October 2017 Chemo Starters

Jencat

 

 

and for good measure here are the bloomers as well, freshly laundered as itough pants.jpgt was not raining when I put them out this morning 🙂 🙂

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Re: October 2017 Chemo Starters

Jencat

 

Here you are my darling, special gold big pants for you, we have all climbed into the pockets to hold your hands.  Sending you much love and hugs

 

 

gold hotpants.jpgHelena xxx

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Re: October 2017 Chemo Starters

Hi Jencat 👭 hope your scans have been smooth today and you’ve got date for the others you are to have 👭 well looks like between us oct17 and the feb17 gangs you’ve a lot hiking into your gold hot pants 😁I’ll tell ladybowler you’ve given a shout out to her big bloomers, I’m sure she can rustle some up ❤️😘💕💕shi xx

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Re: October 2017 Chemo Starters

Hi Jencat, Daisydi here from Feb 19.  Just popped on to say we are all holding your hand and get those big pants on.  Hope it all goes well today.  x

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Re: October 2017 Chemo Starters

Thank you Shi x Yes, good hospital is being very thorough, but making me feel anxious how quickly it's all happening. I need you all to be holding my gold hot pants this morning as feeling very wobbly about the CT scan! I could also do with ladybowlers big pants as well! xx

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Re: October 2017 Chemo Starters

Thank you very much Claire x Hope you are keeping well xx

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Re: October 2017 Chemo Starters

👭❤️👭Jencat glad your daughter is going with you, hopefully you can also ask about the bone scan, chivvy them up a bit so they can get you treatment plan sorted ❤️ Just remember we have all got hold of your gold hot pants 💪💪💪 one step at a time Jencat your team will know what to do and it’s good they are being thorough. 😘💕💕shi xx

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Re: October 2017 Chemo Starters

Jencat,

so sorry to hear your news. Just wanted to let you know you’re in my thoughts and prayers. I hope you will have a quick and efficient team looking after you through surgery and chemo. My Mx healed very quickly and the immediate recon with silicone implant has been very effective. We are all here for you! XxClaire

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Re: October 2017 Chemo Starters

Hi Shi, I got a phone call this morning from CT Dept and I've got that scan tomorrow am. YD is going to take me. Haven't heard about bone scan yet, but BC said phone them tomorrow morning if I haven't heard anything. Feeling very anxious about it xx

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Re: October 2017 Chemo Starters

Hi Jencat, have your scans been set yet, keep on at them so you get them done ASAP. Have you got your girls with you while treatment plan being sorted? Sending ❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Dear Reboot, thank you very much for your card and lovely message, that was so kind of you and much appreciated xx

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Re: October 2017 Chemo Starters

Hi Sarah, (Implausible) Thank you so much for taking the time to message me, I really appreciate it. Hopefully it's been caught early, but got to have scans this week, which as you can imagine is making me feel very anxious as my mind is on overdrive and analysing every ache and pain! Thank you for the encouraging info about your friend doing so well, that's encouraging to hear xx

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Re: October 2017 Chemo Starters

Ps Susie, love to the February '19 group xx

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Re: October 2017 Chemo Starters

Thank you Susie and so pleased that you were able to have the Zoldronic Acid and without any side effects (I didn't have any either) xx

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Re: October 2017 Chemo Starters

Thank you Mai and pleased to hear that you're still doing well xx

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Re: October 2017 Chemo Starters

Hi mini mad, thank you for your kind message. As you can imagine, I'm feeling very anxious at the moment about it all. I've got to have a bone and CT scan in the next couple of days to check that the bc hasn't spread. Nurse said this morning that I'll more than likely have a mastectomy, but because this is a recurrence I have to have these tests first, which is really worrying me. I feel like I'm aching everywhere! xx

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Re: October 2017 Chemo Starters

Jencat, think we’ve all been lumpy since finishing rads, don’t be hard on yourself, you did spot something wasn’t right and got yourself checked out ❤️ You are doing the best you can and you are doing all you can ❤️ Gold hot pants held good and tight we are all holding each other’s 👭 ❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Jencat and buddyfan we are all thinking of you and sending lots of love xx 

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Re: October 2017 Chemo Starters

Hi buddyfan, thank you for your reassurance about having the mastectomy and pleased to hear that you have healed from it so well and quickly. I feel anxious about everything at the moment, mostly the CT and bone scans that I've got to have sometime this week. Hopefully it has been caught early and it wasn't there on the mammogram in August and was overlooked, although I had a manual examination as well and the consultant said everything felt fine. I keep blaming myself that I didn't realise a bit sooner than I did that there was a problem. I can't feel a lump, well no more than usual as I've been lumpy since finishing radiotherapy. I'm overthinking everything at the moment.

I'm sorry that you're waiting for scans as well this week and I can understand your anxiety. I do hope that despite your concerns, the bone mets haven't progressed and nothing is found in your lungs. We certainly do need those gold hot pants buddyfan! xx

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Re: October 2017 Chemo Starters

Buddyfan ❤️ Glad to hear Mx went well. If you get moved onto cape, I have read some ladies on secondaries threads been having some good results with that, if you get put on cape might be worth posting to get their experience but I know I’ve read positive things about cape. Your body’s been through a lot buddyfan so take it gently and you know we are 👭on tightly to yours and Jencat a gold hot pants, is oct17 gang come with 🥊🥊🥊🔫🔫🔫🤸‍♀️🤸‍♀️🤸‍♀️🏹🏹🏹🏹we are here for you and Jencat, everyone sends ❤️❤️❤️👭👭 💕💕shi xx

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Re: October 2017 Chemo Starters

Hi Buddyfan. Glad to hear your mx went well and healed fine. Sorry to hear about the other treatment. Hopefully they can get something sorted for you quickly. Sending hugs let us know how you get on xx
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Re: October 2017 Chemo Starters

Thinking of you buddyfan 😘 🤞for you please keep us posted x
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Re: October 2017 Chemo Starters

Although my mastectomy went really well, my review had yet another unexpected 💩 turn. Assuming letrozole had stopped working, they switched me onto exemestane last autumn. However, my blood ALP is still rising, indicating bone activity (prob more mets?) and other markers 💩 , so at the review they said more scans and I will probably have to move onto capecitabine, the chemo drug. Presumably means no more long haul 🏝🤿🧜‍♀️🏄‍♀️. On top of that, I've been wheezy since Christmas, just later in day and after exercise. So of course I think that it's moved to lungs which will be a whole different ball game. CT scan next week and review 2 wks later. I think this review will be the most worried I've been for a review. 😥
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Re: October 2017 Chemo Starters

Jencat, I'm so glad you caught this reoccurrence quickly. It really pays to check yourself and know your body. I was the same, CT scan, review 8wks later showed all ok but I felt a lump which turned out to be reoccurrence. 8wks gap because I delayed it until after my holiday not nhs delay. Mastectomy went brilliantly, no swelling, healed really well. Good luck with treatment going forward. We really need those gold pants, don't we?💗🤗💗🤗💗🤗💗🤗💗🤗💗
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Re: October 2017 Chemo Starters

Jencat you are very welcome. We wanted to send you something to remind you that we are all here with you and for you. Anytime you need us we'll be here dont be afraid to give any of us a call. Xx
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Re: October 2017 Chemo Starters

You are most welcome Jencat, we’ve got your back 😘
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Re: October 2017 Chemo Starters

❤️😘❤️Jencat when are your scans next week? It’s good they are being thorough Jencat and keeping close eye on everything and good on you for being vigilant and noticing something not quite right again, and getting it checked out, you are proof vigilance is so very important. We’ve got your gold hot pants and meesh has got the 🔫 ready and I’m sure buddyfan will be along with her when you need them 😘😘👭💕💕shi xx

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Re: October 2017 Chemo Starters

Jencat, you are welcome! Hopefully they made you smile, if only briefly. We will always be here for each other, just let us know. Sending love to you and your girls 😘😘

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Re: October 2017 Chemo Starters

You know we will always be here for you remember our notebook from meet up our numbers are in there we are available on the other end of the phone lots of love xx

 

 

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Re: October 2017 Chemo Starters

Dear October '17 ladies, Thank you SO much for my beautiful flowers, it was very kind and thoughtful of you and I feel quite overwhelmed! They were a lovely surprise! x Thank you too for all your support, I really appreciate it. As you can imagine, I'm feeling anxious at the moment with the prospects of having scans next week and over analysing every ache and over thinking everything! They're going to recheck my mammogram to double check nothing was overlooked then, although I also saw the consultant and he said everything felt fine, so hoping the cancer has just appeared since then! I suppose I'm in a bit of shock that it was clear then and not now! Hopefully everything will seem a little easier once I've got a treatment plan. Anyway, thank you once again my lovely friends and love to all of you xx