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October 2017 Chemo Starters

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Re: October 2017 Chemo Starters

Thank you all so much for your lovely messages. Unfortunately I found out today that the cancer has returned in the same place as before. Not sure yet if it is a new primary or a recurrence, probably the later. I've been told I've got to have a mastectomy in the next few weeks and most likely chemo again, don't know yet if it is TN again, but it probably is. Only 'positive' thing is that they don't think it was there when I had my mammogram in August and it didn't definitely show up on the scan I had at the end of Dec, so hopefully it has been found early. As you can imagine, myself and my girls are feeling devastated xx

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Re: October 2017 Chemo Starters

Got everything crossed for you today Jencat 😘
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Re: October 2017 Chemo Starters

Jencat, rest of oct17 thread and ladybowler send ❤️👭❤️For you for today ❤️Please let us know how you get on 💕💕shi xx

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Re: October 2017 Chemo Starters

Jencat, runnerbean sends ❤️👭❤️For today to you too 💕💕shi xx

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Re: October 2017 Chemo Starters

Jencat, I’ll be thinking of you tomorrow, sending love 💕 Please let us know how you get on 😘😘

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Re: October 2017 Chemo Starters

Jencat big❤️❤️❤️And 👭👭👭 from jellytot for you xx

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Re: October 2017 Chemo Starters

Sending lots of love to you Jencat, will be with you (virtually) tomorrow xx

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Re: October 2017 Chemo Starters

We're all thinking of you Jencat xxx
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Re: October 2017 Chemo Starters

Hi Jencat 👭 glad your daughter is going with you tomorrow Jencat, it’s hard to know what’s what when waiting for biopsy results mine were back in 4 days back in 2017. But I think each trust is different. We have got your gold hot pants and you are not going anywhere. I saw buddyfan posted on another thread the other day too so her gold hot pants still working well too. Please let us know how you get on tomorrow 👭we are here ❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Hi Jencat

 

I just popped in to update you on the Zolendronic acid situation and read your post. I hope the results show that everything is ok and it's scar tissue that's causing the problem. I'll pop back later in the week to see how you are.

As for me I had my first Zoledronic acid infusion a week last Friday and no side effects apart from a very slight headache the next morning. Thank you for you earlier help and advice regarding TNBC and the infusion.

Sending you hugs ❤❤❤.

Take care.

Susie B from the still very chatty on Facebook Messenger February 19 group. xx

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Re: October 2017 Chemo Starters

Thank you Shi for your kind words xx

Chaffinch, thank you for thinking of me x I get my results next Tuesday, which will be over 3 weeks since I had the biopsy! Can't make up my mind if the delay is a good or bad thing! ED is coming home from Oxford today to come to the hospital with me and I think YD wants to attend too, so a family outing! Smiley Frustrated

I'm ok thanks, but worried as the doctor doing the biopsy said it was 50/50 if it was cancer again and feeling more anxious about it as the hospital date gets nearer! I'm hoping it is just hard scar tissue, that's what I was told at my check up in August and my mammogram was clear then. If it is scar tissue though, I'm hoping I can get some help with it as it's uncomfortable and painful xx

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Re: October 2017 Chemo Starters

Morning Jencat, I’ve been thinking of you. When do you get your results? Hope you’re doing ok 😘
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Re: October 2017 Chemo Starters

Jencat 👭 it is good your team are doing full checks, they should be doing this to check to be sure ❤️ Remember till anyone actually tells you otherwise you do not have it ❤️ First Christmas without a parent is very difficult but you do learn to live with it, it takes time ❤️And you get to that point when you are ready ❤️ Speak to your bcn or use the someone like me facility on here ❤️ Don’t worry alone Jencat, you could always start a new thread to see if others have had the same and see how they got on ❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Sorry to hear this Jencat. Hopefully it is the scar tissue giving you the problems and time will heal. We all know that waiting for results is the worst. Many fingers crossed 🤞 for you. Please keep us informed ❤️
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Re: October 2017 Chemo Starters

Thank you Sue and Shi for your Christmas wishes. It was hard times being our first Christmas without Dad, but we did manage to do some nice things. 

Feeling really worried at the moment-I had a clear mammogram in August and I was also examined by a consultant, who said the hard scar tissue I was complaining about was from radiotherapy and normal. However, my breast has continued to feel hard, lumpy and at times painful and then I noticed it looked a bit bruised by the WLE scar, so phoned BCN. Went for a check this pm and consultant didn't seem too concerned, but sent me for a scan. The radiologist doctor did seem more concerned though and did a biopsy and I also had a mammogram to check clip she inserted was correctly in place. I asked the doctor what she thought and she said she was on the fence about it being cancer again, 50/50. I spoke to my consultant afterwards and she said it could just be scar tissue (which if it is, nothing can be done about it) but it could be bc again. So now, I've got a sore boob and an anxious 2wk wait for results ahead of me xx

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Re: October 2017 Chemo Starters

Merry Christmas Jencat And Buddyfan ❤️❤️Sending much ❤️To you and your families ❤️❤️❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Merry Christmas Jencat and thank you for your card xxx 

love to you and the girls 

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Re: October 2017 Chemo Starters

Wishing you all a very happy Christmas xx

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Re: October 2017 Chemo Starters

Hey Buddyfan! Glad to hear you're recovering . 

Sending love and hugs xxx

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Re: October 2017 Chemo Starters

Hi buddyfan 😘 glad you are feeling better and op results were good 👍and wound behaving for you. Sending big ❤️To you as always, hope you get pampered over Christmas or are you expected to do the full roast and trimmings? 💕💕shi xx

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Re: October 2017 Chemo Starters

Had terrible episode of extreme pain in arm and back due to fever, probably contracted when I went to surgery for dressing change. Temp spiked at 40 at one stage. Lasted 3/4 days but actually feel better now than I did before. Op review was good. The wound is remarkably good, no swelling and very clean. They cut it all out, turned out to be 3 cancers there. I can't emphasise this enough... CHECK YOUR BOOBS. Don't rely on CT scans.
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Re: October 2017 Chemo Starters

Hey buddyfan 😘 that’s great news you are through op ok 👍 you dragged train driver off the back again didn’t you 😂🤣😂🤣😂 lot you be said for sponge bob square pants, dont forget about knitted knockers, if you haven’t already sent for them you can get ones to swim in too 😘  ❤️❤️❤️ Yep 2 years ago we were all coming up to half way through chemo 💪💪💪🥊🥊🥊🔫🔫🔫 and we are all still 💃🏻💃🏻🕺🕺💃🏻💃🏻🕺🕺🕺as best we can 😁 sending big ❤️💕💕Shi xx

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Re: October 2017 Chemo Starters

Had the mastectomy Monday week ago. Looks like it's healing well, not much swelling but it is very tender to touch as the bruising has started coming out. As lymph weren't involved, I think it was quite a simple procedure. Can't quite look at myself in the mirror. I have been out, sometimes with 'sponge Bob square boob' the temp softie, sometimes not. Back is gradually improving I think/hope, although it still feels like I've been thumped in my back when I first get up. I hope you're all doing well, two years down the line.
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Re: October 2017 Chemo Starters

Glad you’ve had your treatment. That’s a shame about the holiday though. Hope your surgery goes well and you are are recovered from it well before Christmas 😘
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Re: October 2017 Chemo Starters

Buddyfan, sorry you have had to cancel holiday. 😘 glad to hear calcium ok and treatment got go ahead 👍 you’ve  been 💪💪 telling people at your husbands concert well done, you are fantastic buddyfan ❤️❤️😘💕💕Shi xx

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Re: October 2017 Chemo Starters

Calcium was ok this week so I've had zometa and the rad zap. Went to a gig yesterday with my husband playing, back where we used to live. All a bit emotional telling people, but I'm glad I have. I've got to cancel the holiday as we can't afford to lose the humongous amount we have to pay on 20th to complete booking. The insurance wouldn't actually be enough to cover us, I was going to increase it when nearer the date to pay. Unfortunately that is now and I can't get a fit for travel yet until after the masectomy on 25th. Stay strong all of you.
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Re: October 2017 Chemo Starters

Hi Buddyfan,

 

Glad to hear you’re ok if a little shaken by your experience. You would think they could advise you to go straight to the doctors for a second test instead of sending the ambulance if they know some of them are false results. However saying that if it had been a true result you would’ve been happy they are so vigilant. It’s good your son now knows as that will take some of the stress away. Rant on here as much as you like, we’ll always be here 😘😘

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Re: October 2017 Chemo Starters

Hi Buddyfan,

just wanted to say I was thinking about you and sending support while you are struggling through this difficult side of your treatment. Hope rads go ok for you Friday. So frustrating when you have avoidable scares like the potassium fiasco - it’s scary enough without that. Let the tears through as they help you cope with the emotional build up. We are here for you. It’s good to share how you are feeling. Do you live anywhere near London? Could meet you for a coffee one day if you like? Sending hugs xxx 

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Re: October 2017 Chemo Starters

What a roller coaster for you buddyfan ❤️ It does seem a very odd system, you would think if they know that potassium test can give false positives, the first thing they would do would be a fresh test and that the paramedics would be trained to do it. Nightmare of emotions for you all. I was going to ask if you’d told the family about your diagnosis. You need their support and they wouldn’t like you to be carrying this alone. Wishing you a drama free week, hope your calcium levels improve do that you can get your treatments on time. You are in our thoughts feel free to come here for a rant any time and we will provide the hugs and support 😘
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Re: October 2017 Chemo Starters

👭❤️👭buddyfan what a week you’ve had, it’s good you’ve not cancelled holiday, focus on it, you will go on it 💪💪💪it’s ok to have a 😢 it’s good to get them out rather than bottling it up 👭❤️👭it’s good you are getting sleep and glad your show has told son 💪 you can concentrate on you 👍 Big ❤️As always buddy fan and we have got hold of your oct17 gold hot pants tight 👭👭like it not lovely lady 😘💕💕Shi xx

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Re: October 2017 Chemo Starters

Had a bit of a scare on Wednesday. I was offered chemo bus on Friday for my zometa bone infusion if I could get bloods done day or so before. Normally I get bloods at the hospital, chill for hour or so for lunch then have infusion. Chemo bus is half hour nearer so thought great. Had bloods done at 8:30 Wednesday. Got a call from hospital at 7pm to say potassium was High so they'd like to see me. Said OK, I'll go in on Thursday. They said no, we want to see you now. They asked how far away we were, I said 40mins and they said in that case call 999.😲😲😲. Called 999 said maybe an hour, so decided to go by car. Got ready to go, then son appeared and said did we know there was an ambulance outside. So that took less than 10mins. They did ecg as hospital had said my potassium was 7.5. The normal potassium level in the blood is 3.5-5.0, between 5.1-6.0 mild, 6.1-7.0 moderate, above 7 severe hyperkalemia, which can give heart attack I think. Tests were all OK but as my normally very good blood pressure was super sky high, I opted to go in the ambulance. As my back pain could have npbeen masking chest pain, I think that's why they diverted off their ordinary call. Anyway, they did immediate test at a and e and potassium ok. Apparently if blood test left too long, it can result in High potassium. But get this, doc said it can happen 4/5 times a night and maybe 1/50 is a true problem. Something wrong with the processes there. All those wasted NHS services must because blood test was left standing too long. Won't make that mistake again, I'm going back to normal blood test at hospital before infusion. Turned out my calcium was too low to have the infusion. zometa lowers calcium so they've given me calcium tablets and we're going to try again on Thursday. Then my radio is on Friday. Annoyingly clashing with a once a month really enjoyable club I go to. Oh well. Psychologically, I'm feeling a bit better. Sleeping OK, fewer tearful moments, although the slightest thing can still throw me. DH tolld my son, so I feel better that I'm not having to hide my feelings. Still can't get back to feeling I'm going to beat the average of 5 years, which is how I felt before this all blew up again. Doesn't help that DH's sister has been given terminal status for myeloma. It's all a bit too close to home for my liking. She's younger than me. It feels good to blurt out my feelings. DH is wonderful and son is giving even more hugs than normal, and that was a lot even before he knew I had cancer. Still haven't completely cancelled holiday . I know I've got to., told insurance, but not the holiday company. Thanks for being there. Hope you're all doing well. Have you got back to pre cancer fitness and capabilities?
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Re: October 2017 Chemo Starters

How are things buddyfan?
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Re: October 2017 Chemo Starters

If you want to eggy Jeff buddyfan you know our ears can take it, but a bleepty bleep always gets a 🤣😂🤣😂🤣 glad you’ve got a date for mastectomy 😘have you tried the surgery threads to see if anyone who has had a mastectomy can give you any support and advice? Sending big ❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Ha, I see I can't be that explicit with my language. Bleep was💩!
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Re: October 2017 Chemo Starters

As ever, thanks for the info ladies. Bit of a **bleep** day really, the breast care's doctor saying it hasn't spread anymore, only referred to not spreading to organs. However, there are some small spots in my sacrum and pelvis and a slight increase in the original mets around bra strap level. So the rads idea wasn't for the old area but for the lower area as she doesn't want the cancer to damage nerves serving the 'undercarriage' as she called it. I'll only get one zap so not onerous. My mastectomy will probably be on 25th Nov. They rang me with that info before we even got home. They've certainly been on the boil since deciding it was cancer again.
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Re: October 2017 Chemo Starters

Hi buddyfan

i bought some cheap travel bottles from the pound shop filled them with E45 and used to keep them in the fridge taking one out each day, taking it with me and putting it on as soon as I came out of rads and was getting dressed 

the ritual of going every day (I had 23 sessions)!was tiring but plenty of fluid and naps helps you get through 

 

 hugs to you x

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Re: October 2017 Chemo Starters

Hi Buddyfan, that’s really good news! As the others have said rads are ok you just need to keep slapping on the moisturiser and regularly air the treated area. I used e45, aloe Vera gel and moo goo. You do get fed up with the sight of the hospital though but its over in a flash 😊

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Re: October 2017 Chemo Starters

Buddyfan

 

Thats really good news and hopefully the back pain will now ease for you as well, its amazing when we are stressed how it manifests in our body. Sendimg you hugs

 

Helena xxx

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Re: October 2017 Chemo Starters

Buddy fan ❤️❤️❤️So pleased to hear no further spread 👍and good you’ve plan too. On rads it’s piece of cake, just keep fluid intake up and if you pace yourself and have regular naps you’ll be fine. Get air to skin while at home so loose tops and a vest top under if you are going out. Drapy scarfs round front is good too. Think the creams we used were moo goo, dr organics aloe Vera and tea tree gel, e45 and aveno. It’s just like being on a Sunbed and doesn’t last longer at all, the doing it everyday will be what gets on your neoprene pants 🤣😂🤣😂🤣by the way Cassie found penguin dressed as unicorn things in paper chase 😂🤣🤣🤣🤣so there you started trend with your licky penguin 👅 🐧 😁💕💕shi xx

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Re: October 2017 Chemo Starters

That’s good news buddyfan 😘 I didn’t find rads too bad, keep the skin well moisturized and rest plenty, just going to the hospital every day is knackering 😘
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Re: October 2017 Chemo Starters

Hi, I had scan on Sunday to check if any more spread. Review yesterday says no, thankfully. You can imagine how worried I've been. So had choice of mastectomy or lumpectomy plus radio. They said slightly better outcome long term with mastectomy so that's the way we're going. I don't mind. I just want to get rid of it all. They advised not to have reconstruction. I'm 61 and not precious about my figure. OH agrees and is ok with it. My back is in acute pain atm. I think it's stress and hoping it will ease up now. But we're seeing oncologist tomorrow to discuss rads on back before the op. So if there's any advice you girls can give re mastectomy or rads i'd be grateful. I didn't have rads first time around. Loved the neoprene pants. Thank you. You make me smile.
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Re: October 2017 Chemo Starters

Buddyfan, have your team got plan for you ❤️Just checking in to see where things are this week 😘💕💕shi xx

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Re: October 2017 Chemo Starters

😘 buddyfan and we know your pants are neoprene too 😘 unless you go diving in silk ones and not told us 😳💕💕shi xx

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Re: October 2017 Chemo Starters

Thanks for the info ladies. The pants made me laugh. Xx
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Re: October 2017 Chemo Starters

Hi buddyfan, it’s good to see your nhs team being so proactive ❤️ Don’t make any decisions about Maldives just yet. You could still go and then just tweak your plans around what’s comfortable for you to do when you are there ❤️❤️💕💕shi xx

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Re: October 2017 Chemo Starters

Hi Buddyfan. From my experience the mastectomy wasnt so bad. I had my surgery on the wednesday, the following saturday I went to london for the weekend. Was a bit careful about carrying heavy bags, when I remembered. I often forgot. I only took paracetamol as a pain killer after surgery and by the sunday I was forgetting to take them. Now my right side is still a little weaker than it use to be but i dont favour it at all. I went back horse riding 6 weeks after surgery but that was mainly as i was still recovering from chemo. Sending hugs xx
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Re: October 2017 Chemo Starters

His buddyfan, so sorry to hear about what you’re going though at the moment but glad to hear that you are being well looked after by the NHS. We all have a lot to thank them for. We may not be active in the forum much these days but we are never far away if needed. You can always count on our support 😘 I’ll ask Cassie to pop over with regards to your mastectomy question x

@buddyfan wrote:
Well, I've come to terms with the fact that I'm probably going to have to cancel our Maldives holiday in January. I couldn't sleep worrying about it so at 5am I called the oncology nurse answerphone and asked if I could pay to get a quick scan. I was called at about 9:45 to let me know she had spoken to the breastcare team and they were going to chase up when the ct scan will be. Called again at 10:30 by bct. So again,hurrah the NHS. My scan is Sunday week, multi discipline meeting the following Wednesday, so they've booked me an apt that wed pm. Again, hurrah. I asked how long the healing process takes after masectomy or lumpectomy. She said about the same and thought I might still be able to go on holiday. Trouble is, I know there will be alot of climbing vertical step ladders after snorkelling, which is tricky with my one good arm anyway. As that one Good arm is also on the side of my cancer I think that is asking for trouble so soon after the op. Those of you that had mastecomy, how long did it take you to heal, so you could pull on that side's arm?
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Re: October 2017 Chemo Starters

Well, I've come to terms with the fact that I'm probably going to have to cancel our Maldives holiday in January. I couldn't sleep worrying about it so at 5am I called the oncology nurse answerphone and asked if I could pay to get a quick scan. I was called at about 9:45 to let me know she had spoken to the breastcare team and they were going to chase up when the ct scan will be. Called again at 10:30 by bct. So again,hurrah the NHS. My scan is Sunday week, multi discipline meeting the following Wednesday, so they've booked me an apt that wed pm. Again, hurrah. I asked how long the healing process takes after masectomy or lumpectomy. She said about the same and thought I might still be able to go on holiday. Trouble is, I know there will be alot of climbing vertical step ladders after snorkelling, which is tricky with my one good arm anyway. As that one Good arm is also on the side of my cancer I think that is asking for trouble so soon after the op. Those of you that had mastecomy, how long did it take you to heal, so you could pull on that side's arm?
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Re: October 2017 Chemo Starters

Buddyfan, sorry you're having a rough time of it. We are always here for you, just let us know what you need. Sending hugs 😘 

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Re: October 2017 Chemo Starters

There is /fulvestrant-faslodex which I think is quite new ? and  Exemestane - which you can try I think Buddyfan.