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December 2020 Chemo Starters

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden 

One more to go, that's great! You got this!

I am two weeks post masectomy and waiting for histology next week, fingers crossed x

A little break sounds fabulous, once I know my treatment plan moving forward I am hoping to get away with the children 🙂

Sending hugs to everyone x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi It's gone very quiet on here and I suppose that's a good thing as it means that everyone is moving on. However, I keep thinking of you and wondering how you're getting on. Have you had the drain removed yet? I do hope things are looking up for you.

I had my 3rd FEC cycle yesterday, only one more to go now and I cannot wait. Mouth ulcers still appear but are under control. I need to self-inject for 5 days from Sunday to boost white blood cells as they were a little low this time but they had recovered by yesterday so chemo was able to go ahead. My oncologist doesn't want to risk any delay to the final chemo so it's a precaution.

Hubby and I had a couple of nights away on North Yorkshire Moors and spent a morning in Whitby. We really enjoyed being away from our local area for the first time in 9 months and it has given us both a huge lift. It's easy to underestimate how this cancer experience affects our loved ones and he has been such an amazing support.

Hope to hear from you soon and from anyone else who has the inclination to post something.

Best wishes to you all. 😊😊❤️❤️

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman Caroline. I'm echoing the sentiments expressed by the others. Really pleased to hear that you have passed through to the next phase, and returning to some sort of normal. I think that's what we all crave. Enjoy the summer, the animals and life. All the best xxx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman, Caroline. So pleased to hear that you are moving on so well with your life. How wonderful for you to have that feeling that life is beginning again. Thank you so much for all your support and understanding during the last few months. It was always a delight to hear from you and your honesty was much appreciated. Good luck and thank you. xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Hi Caroline, this message has made me emotional. You have been such a great source of comfort in many of your earlier messages and I am so pleased that life is returning to normal for you and you are moving forwards..

I am smiling typing this message and wishing you every happiness for the future 

Big hugs to you all xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Hi Caroline, it's lovely to know your name at last. I don't know if you will sign in again anytime soon but it's been a privilege to know you and I am so pleased that you are living a near normal life again.You have come through your cancer experience and are all the stronger for it as I suspect many of us will.

I am doing fine now, mouth ulcers under control and some fatigue but not too bad. I have only 2 more cycles to go, one on 10th June and then on 1st July followed by 5 days of radiotherapy at the end of July.

Like you, I will be on hormone blockers for 10 years. The hair will be the public reminder of what's been happening, I really want it to grow longer again.

I shall miss you but know you are going on to better times, I wish you well.

Sending love and hugs.

Karen x

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 and everyone

I've just caught up a bit and hope everyone's day today has been okay. @higgi I still have my fingers crossed that things calm down soon. @Shine13 and @PaulineS27 wishing you gentle recoveries from surgery. @grannyp well done for braving the party and all the other things you have been braving! @Karden I often think of you and hope that this round of chemo isn't being too unkind...

I'm back at work now and am kind of moving on I think. Although I still have 10 more herceptin jabs (number 9 on Monday - I have pretty meaty thighs so they aren't a problem, but I do agree about the going slowly) and 10 years of hormone blockers, I do feel that life is beginning again. I'm still quite self conscious about my teeny hair and my fake boob, but even that is getting easier. 

So I'm kind of signing off I think...I'm sure I will still drop in sometimes to say hello and see how everyone is doing. But I would like to say a massive thank you to you all, not just the ones I've mentionned. Your compassion, humour and empathy meant a great deal to me when I was in the miserable depths of chemo... And definitely helped me get through.

I wish you all the very best that is possible for us - and hope we all have a sunny summer, wherever or however that is.

Thank you, hugs all round, Caroline xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

 

Well have been really hit with fatigue since surgery which I was not expecting as a lumpectomy seems much easier to bear than the mastectomy/reconstruction.  Seems to be getting better, I guess I got off too lightly through chemo. I was feeling sorry for myself until I listened to a Macmillan talking book on fatigue. The advice was don 't stand in a shower it is to tiring and use a towel dressing gown so you don't tire yourself out drying yourself. Well I am no way near that bad, so I cheered up.  It is the concentration, decision making and thinking for work that seems to be the biggest issue. People defiantly getting on my nerves a lot less tolerable. @grannyp So I have been quite open as I thought I should have an explanation  for my grumpiness and short temper. 😃

 @PaulineS27  glad your surgery went well my underarm was painful.  I seem to have ended up with cording it seems really common, so I keep doing the exercises and Utube videos still a bit restricted.

@dipitdee  hope you are felling better not much fun on top of everything else.

Starting Kadcycla tomorrow so hoping it is not to bad and that goes on until the new year.  My sleeping is getting a lot worse but I think that is menopause kicking in. @higgi  the Herceptin injection was fine for me.  I think you need to make sure the nurse gives it over 5 minutes and not to rush it especially if you are a skinny one.  I would try once more and say it really hurt last time.  If we give out prizes for the most complications that might be your good self so well done!!!!!!!!!! Sounds like you have been coping amazingly well.

The good thing about these chat rooms is you always find someone having a tougher time and it puts thing into perspective and I start to think how lucky I am.  Though I guess the cancer was bad luck - but could have been worse.....................😉

I guess that won’t work for the person worse off………………………….hope I am not sounding insensitive.

We are so getting to the end of this but I think you have to allow months to get back to fullish normal. 

Xx😘

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Thank you everyone for thinking of me, I am now home and oh what a blessing that is. The hospital staff are lovely, but there is no where better than home.

The OP went well, they decided to put an expanded in so I have half a fake boob. I dont know about you ladies but my arm pit hurts worse than my boob and I'm not liking the restriction in movement 🤪 

@higgi I am having herceptin injections but I'm a size 14 and I dont find it too bad, it strings but no real side effects thankfully.

@grannyp I like to hear that there is joy after treatment and a new normal.

@Pyewacket thanks for the support and your suggestion about looking at over the muscle, I cant imagine the pain if it was under the muscle 😬

Hope you are all doing well xx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp Just seen your post after I finished my epic one! For my part I think it’s lovely to hear from people who have finished active treatment. 1) It reminds me that there is light at the end of the tunnel and that life should eventually settle into some kind of normality. 2) It reminds me that even when active treatment is over there will still be hurdles to overcome. Thanks for your posts x

@higgiI’m not getting herceptin injections but hopefully someone who has can advise you. If it’s too painful presumably they could still give you it by IV?

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

Hi All!
@PaulineS27 hope surgery went well today. Hopefully by the time you read this you’ll be at home relaxing and recovering x

@Pyewacket that’s great news that you’ve finished all your active treatment, time to get on with life and be able to make plans again now! Have you heard of MooGoo to help your skin post radiotherapy? I’ve got some to try just now and it feels lovely. I’ve got that to look forward to in another 6 ish weeks as they want me to start on the kadcyla first then take a break in my treatment to get radiotherapy. 

@higgi hope they get this chyle leak sorted and you can start to feel normal again and who knows...maybe even get out for a bit of exercise! 

It turns out sleep was the least of my problems post 2nd surgery, I ended up with an infection as my cold last week progressed to sinusitis after my immune system being well and truely smashed. Had to go back into hospital and eventually got sent home with antibiotics. Starting to feel a bit better so we had a lovely bank holiday weekend planned...until little ‘un started complaining of chills and headache and sure enough, has a fever! So more COVID tests and yet more isolating. Hoping she starts to feel a bit more cheerful and the test comes back negative so we can FINALLY get out of the house! 
Hope everyone else’s bank holiday weekend has a better start to it than mine! 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi all

@higgi you poor thing. You really are having a tough time & just when you should be thinking that things will get easier. I can’t offer any advice on this as I am not HER2+ but I am sure there is someone on here who can help. Good luck & hoping to hear better news from you soon. 
@Pyewacket good that you are now well on the road to some sort of normality. Like you, my active treatment is over & I just have bisphosphonates & hormone tablets - Anastrozole in my case due to my advanced age! I feel somewhat hesitant about posting here now as I do feel very well & I know that so many are still recovering from surgery & have months of targeted therapy ahead. But hope that we can give some reassurance that things do get better. 
I also love the ‘Titty Committee’ 😊 & really admire those of you who have been completely open with everyone about your situation. I suppose we are all different & have had different life experiences up to this point. I was going to say that there is probably an age element to it & that us old folk tend not to broadcast everything. But then realised that a childhood friend who is 5 years older than me recently announced her BC diagnosis on Facebook! So just different people I guess. 
I know what you mean @Pyewacket about expecting a rapid recovery. There are still spells of unbelievable tiredness. I have now decided to do the things I really want to do & that I enjoy & anything that is totally essential & only fo anything else when I haven’t been too busy. Otherwise it is a couple of busy days & wham, knocked out for a day😂 Hopefully this might be a good tip! 
Anyway I have rambled on enough -again. Hope that you are all as well as possible.  @PaulineS27 hope surgery has gone well  @Karden hope side effects are improving  And hope the rest of you are improving each day  xx

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Thanks pye hope u have a lovely weekend toooo ! Enjoy every second and make it quality ❤️
just a quickie for those who have had herceptin via injection .... how did u find it ? I had my 1st yday and they said leg wud ache a little ... well I cudnt even stand up last night !!! Any muscle movement kills !!! I’m very skinny n they said there was no fat to inject into 🙌 

not sure I can do another 12 of these I preferred the 2 hour infusion!!!! 

so just wondering how you found it thanks 🙏 😘xxxx

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Hello all,

@PaulineS27 hope all goes well for the operation for you - meant to post sooner so you'd have a chance of seeing my message... but I still don't seem to know what day it is!

My reconstructed breast is swollen and a bit tender now radiotherapy has finished, but nothing major and it's fading. The skin was a little pink but beyond that all fine. So I've got away very lightly.

@Guest user cording is a bugger, my sympathies. But the chyle leak and associated treatment sounds like a next level nightmare. Really hoping this phase passes soon for you.

@grannyp Glad you survived the party!

@dipitdee Hope you've managed some sleep this week with or without the sofa? How is it settling down and how's the drains?
I'm not her2+ so I won't be on Kadcyla, was just including it as an example of our array of treatments... don't want any division between our different flavours of cancer, all inclusive group here! I'm all done with active treatement now, surgery, chemo and radiotherapy done and dusted. Just need to take bisphosphonates and tamoxifen going forward.
So feeling very lucky compared to those of you here with things still ahead of them. Your 'Titty Committee' really made me laugh, I so wish I'd thought to entitle my update emails to folk that! Brilliant!

@Karden hope you get help with the nausea, my first two rounds of EC i didn't take the supplied nausea pills as it was so low level it didn't really worry me. By the third I was merrily throwing them down my neck though and they worked fine so hope a change in meds will help you. I only had the EC components not the F bit that you are having in addition - and first round I wasn't too tired, second round was very tired but recovered half way before next session. Third session i didn't really recover in the three weeks till my next chemo.

@Shine13 great news from the surgeon! Hope you get on the Kadcyla it sounds a good new option. Radiotherapy was fine for me (although a drag) hope it is for you.

Overall I'm fine, just tired a lot still. Yesterday was reasonably energetic but slightly stressful, and though sleeping well I feel very tired and groggy this morning. I'm expecting a steep linear recovery I think and that's plainly daft! But overall good here.

Hope everyone is getting through their week, and wishing you all a nice weekend. Well, @PaulineS27 is spending it in hospital... @Guest user will be spending it eating celery, in agony and unable to move... but APART from that i mean 🙂

Take care, Pye xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone @PaulineS27 @all best for tomorrow operation !!! Hoping it’s all a breeze ! 
residual cells will b blasted or melt away with kadcyla 🤞🤞🤞🤞

my cording is being dealt with by specialist physio ... so lucky to have 🙏 but can only do it when we know leak as stopped ... catch 22 ! 
I have venous cording caused by chemo ... v serious & axillary webbing from node clearance... not serious very treatable !! 

Update

10 ineedles in last 24 hours ! 6 stomach to control chyle leak , 1 covid number 2 , 1 boob inflate , 1 arm pit drain snd finally my herceptin n perjeta mini chemo cycle 6/18 !! ,(now a 15 min injection.. wow 🤩 ) 

Fluid taken from arm pit swelling (70 ml today ) to test for fats to see if chyle is still leaking after 3 weeks of fat free diet , pressure dressings n NO EXERCISE!!!
Torture on another level ... I can’t put into words ... as got severe cording in left arm from arm pit to wrist on top of everything... Any movement extremely painful 😣
Hoping praying it’s worked 🙏🙏🙏
Ows u all ? Big loves keep talking ❤️❤️xxx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

My goodness so much to catch up on.

@Shine13 yes my Op is Friday 😱 I am apprehensive to say the least, I know it is silly but its the anaesthetic that scares me but it has to be done so I have to put my big girl pants on!  I started chemo at the end of December so I only just sneaked into this lovely group. How are you feeling after your op? I just saw you had no sickness with EC, I found that the hardest of the treatments, made me so poorly. Paclitaxel Herceptin and pertuzumab were much kinder. On a plus note my hair is growing and I even have an eyelash lol 

@Guest user I hope your leak has stopped

@grannyp Its good to see you getting back to some sort of normality 

@Karden How are you doing?

@Pyewacket How are you after radiotherapy 

Take care everyone xx

 

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@Karden thanks for cording advice will check it out. Not sure I have any yet but it may still happen.  I had no sickness on EC they gave me dexamethasone, endansetron, domperidone and one for three days aprepitant.  The slight horrible feeling was relieved  by small regular snacks.

@PaulineS27 good luck for surgery I think you are the last may be- in the December group.

@Guest user hope your leak has stopped.

@grannyp glad things are getting back to normality I think my general confidance has taken a knock through all of this. 

Saw my surgeon  this  week, 5 lymph nodes cancer free though two had signs cancer was there , margins are clear  so no more surgery (thank God) but they found 1 mm of residual cancer, can you believe it so near to full clearance.   At least I have kept most of my axilliary nodes.  Overall a good result from chemo.  I see the oncologist on Tuesday so I am hopeing this will mean I meet criteria for kadcyla which seems less toxic  and even more targetted, fingers crossed and waiting for RXT start dates in 4 weeks.  

Hope everyone so doing ok.

xx

 

 

 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp I'm glad to hear that the party went well. I'm not a fan of large gatherings at the best of times so will have to ease gently back into socialising when the time comes. Time is really moving on for you with all the follow up checks which must be reassuring but could also be a bit worrying too. We are so lucky to be well cared for in the NHS.

@dipitdee I'm sorry to hear about the residual cells in the nodes but I hope the forward plan will zap them for good.

@Shine13 I had cording in spite of doing the exercises religiously but I persevered and it's completely gone now. If you google breast cancer cording exercises you will find lots of videos and I particularly liked the Australian woman, her exercises really helped. My cording extended down to my wrist at its worst.

@higgi How are you doing now, any improvement? I really do feel for you, what a rotten experience you've had. I admire your tenacity and the fact that you still can bring humour into your posts. You deserve a medal!

I have had the 2nd FEC and it's knocked me out more than the tax previously did. I didn't know I would be so tired. The low level nausea is getting me down too so am going to ask about different meds for next time. Any tips?

Hope everyone else is ok and moving forward. 👍👍

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Pleased to see that you are all being as positive as possible despite the further twists & turns on this difficult road we have all been travelling. Hope you all overcome whatever problems you are facing & we really do need to be grateful for all that can be done & is being done for us. Kadcyla seems to be an example of how things are moving on & improving all the time. It isn’t a treatment that affects me but I have seen lots written about it & it does sound like another big step forward for so many people. 
I had my 6 month check-up with my surgeon today. All was well & he was very happy, so sigh of relief there. Of course, only a manual examination & discussion but that’s fine for now. Will see him again in November but in the meantime I have a check-up with my oncologist in 4 weeks, a check-up with the breast nurse at the radiotherapy clinic in July & my surgeon is arranging my 1st annual mammogram for August. I feel I am constantly under surveillance- but better that than no checks. 
And I survived the party😂 A bit panic stricken at first but after a while it all seemed quite normal. Nobody mentioned my situation which was great as I could choose whether to say anything if the opportunity arose & I wanted to.  My other anxiety was that the last time I saw this group of people was at the same place the day before I went for my recall from screening last year. So a definite trigger for unpleasant memories. And this time I had my check up the day after seeing them which felt ominous. Fortunately better news this time. 
Anyway, enough about me. But hope that I can give some of you a little bit of comfort that we can get back to normal. We all have anxious & really scary times but you ladies do seem to be doing your best to look forward. xx

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13the cording feels like tight strings from armpit but it shoots right down my arm. I can feel them in my armpit. I had full range of movement but it was really tight when my arm was at full stretch. I think mine will only get tighter since I won’t be able to properly stretch them for at least another week. When I had my left arm stretched over my head I could see the cords like a rope running down the centre of my armpit. You can also get it running down to your breast or side.

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@dipitdee  The Kadcyla is good clever  stuff it was only agreed for primary breast cancer just after we were diagnosed so I would say anyone getting it is a lucky duckie.  A  year ago it was only used for secondaries must be very expensive.

What does cording feel like? is it painful or just restricts movement.   I am getting shooting pains with some small movement and wandering if I am getting it.  I seem to have a good range of movement,  ok doing the exercises.

Can t advise on drains as did nt get any.

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@higgi thanks for the offer of a bag, I’ve got one. Rather fetching red, white and blue striped number! It’s definitely managing to stop me getting too tangled. I will definitely look into getting a heart shaped pillow as my armpit is aching so badly and I can still feel some cording so I’m sure it’ll be a while before it settles down anyway.

 @Pyewacket don’t think the length of tubes they’ve left me will reach to floor, we’ve got quite a high bed. Might experiment with sleeping on my side in bed tonight. Sitting propped up on sofa felt ok pain wise last night, but I didn’t get much sleep. Are you going to be on kadcyla too then? I have come to the conclusion that despite the scariness, at least there’s another option nowadays to make sure they get as much of it as possible if chemo hasn’t completely got it. Can’t say they’re not throwing everything they can at us to keep us going! How are you feeling about it? Have you started your post surgery treatments? I’m like you, I told all my friends about my diagnosis. I keep everyone updated on my WhatsApp group, my ‘Titty Committee’! Saved me saying the same thing over again 😉 However I haven’t been working since I had my daughter 4 years ago. Was going to go back to work after she was 3 then pandemic hit. The thought of looking for work now and explaining to an employer I need time off for appointments makes me run cold. It’s thankfully not something I need to think about immediately but I’m definitely going to speak to Maggies or Macmillan for advice of how to tackle applying for jobs while still on treatment. Just need to get over this hurdle first.

Good luck with the house @higgi ! How exciting to have something else to focus on! Let us know how you get on xx

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

@dipitdee  Bit scary about residual cells in the remaining nodes after chemo, for you specifically, and for all of us. There was no sign of node involvment from the MRI for me, but surgery revealed the sentinel nodes were affected and then 7/23 axillary nodes. Perhaps it just shows us the importance of kadcyla, tamoxifen and other treatments we must follow up with. 

Regarding sleeping with drains in - I sleep in the left side of the bed, drain was in my right side. But i managed to trail the tube over my chest to the bottle which I sat on the floor next to the bed. Didn't have any problems other then waking sometimes when i got in a bit of a tangle. Suppose this depends how long they've left the tubes for you thought? Hope you manage to find a good nights sleep! 

@grannyp Glad your upcoming party is a little less daunting for you. I took the opposite approach to you and told everyone about my cancer whether they wanted to know or not, casual aquaintances included! Conversation was inevitably along the lines of 'oh thats a bugger, where are you in your treatment', then a tale about their/family members cancer.  I went back to work after my diagnosis as treatment couldn't start due to Covid, and was very anxious about dealing with everyone. Reactions varied from those i'm closer to wanting to know all the details, to those I know less well just giving an extra warm 'lovely to see you back'. Then of course as I work in a large blue collar environment some folk didn't know and it was just a 'oh you been on holiday again yer lucky sod?'. But it was all fine, I actually felt really warmed and supported, this was 3 weeks after my diagnosis. I know we're all VERY different but hope that helps a little x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Ps I also had a bag to put it in that breast clinic gave me ! .. I cud send it to you ??? X

higgi
Member

Re: HiRe: December 2020 Chemo Starters

@dipitdee  Just seen .. I had it in 3 weeks n never noticed it I was in that much pain with the chyle leak 🤣

hiwever it was a breast drain not arm pit ... take it yours is under arm ? 
have you got heart shaped cushion for under arm ? I use this and lie on back xxx 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @dipitdee  ... glad u got the surgery done now ANC ! 👊🎉 all gone now so hopefully u can relax more and yes kadcyla will work it’s wonders now for you I’m sure u will b put on that 🙏

still swelling under arm despite injections fat free n not exercise but hoping it’s just seroma now n not chyle 🙏🙏🙏 got stock regime out another week !!! 
feel so weak without my usual fatty diet 😂

this has been the hardest 4 weeks of my whole life and I have trust everything will work out and I will soon b better ... no swelling eating whatever I wish n exercise!!! 🙏🙏🙏🙏🙏🙏

to stop selves getting bored ... we put an offer in on a house ... waiting to hear OMG !!! Massive project but dream location ... tell ya mores if works out ❤️
love agsin to you all my warrior friends ... don’t exercise too much without me 😂🙌😘xxxx 

 

 

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

Oh...meant to also ask...does anyone have advice for sleeping with a drain in? Slept a few hours propped up on sofa last night as felt I needed to be more upright. Wondering how everyone else has managed it?

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

@higgiso glad to hear things are going on the right direction for you. Sounds like you’ve had a really rough time of it. Also excellent news the herceptin and perjeta seem to have worked their magic! Injections only will be so much easier!

@Shine13 Great news about your results too! I ended up with cording after my sentinel node biopsy even after doing the exercises religiously so look out for that. I watched some YouTube videos from a physio in Australia that helped too, felt a few satisfying pops which was great.

I’m just home after 2nd surgery for total axillary node clearance after 2 out of the 3 sentinel nodes they took out after lumpectomy showed residual cells. As nothing had shown up on any of the MRIs it was a bit of a shock and sent me into a bit of a spiral it wondering how bad it had been initially if there’s still cells there after chemo. Calmed down now and hopefully there’s nothing to worry too much about in the nodes they’ve removed today.

I am thinking that although the surgeon has told me I’ve had a good response to chemo but not a total response it’ll mean kadcyla instead of herceptin/perjeta for the next year. Have app with the oncologist on Tuesday so should find out more then.

@grannyp It makes me so hopeful so read that you’ve got some of the ‘old you’ back. It’s definitely something we all need to do in our way, acknowledging how we feel and being kind to ourselves. The Thursday before I had the news about the lymph nodes I was almost 2 weeks post surgery, feeling better and was starting to make plans...like stopping the online shop and venturing out to our wee Main Street more and looking at going to visit family in Scotland. Last week was yet another set back, and another lot of self-isolation and I have to admit I just got a bit sick of it all! I just really want to be able to make plans for the future. 
Going to try and relax this weekend as I’m pretty sure I’ll be needing the codine (getting the big guns out!). Hope everyone else manages to have a lovely weekend and that the rain relents a little x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

@higgi so pleased to hear that things seem to be going in the right direction. Fingers crossed that everything resolves itself. 
Seems that we are all moving in the right direction and treatment after chemo is generally proving more manageable. Hoping that those we have not heard from are having an easy time. 
I have just had a couple of days away from home seeing family and friends. Didn’t know how this would be, especially after reading the much recommended article by Dr Peter Harvey  which suggests we should make very tiny steps to move away from home and very gradually move back to our pre-cancer lives. Perhaps I am unusual but I loved my time away. I felt totally like the ‘old me’ & for much of the time completely forgot about all that has happened over the last 8 months. It actually felt worse coming back to the environment in which I have gone through my treatment but now feel that breaking away from my home situation has been extremely beneficial. 
We are all very different but I sincerely believe that we can help each other by sharing our own experiences as we go through treatment & come out of it. We may not identify with others’ views but it helps us to realise that there is no right or wrong way to deal with this bad hand that we have been dealt  

I am now still very apprehensive about the family party I have to attend but think I have rationalised most of this anxiety. I have been very private about my diagnosis & treatment & - other than immediate  family - only shared it personally with a handful of people who needed to know for various reasons. The people at the party will know the full story but not from me & I think that is what worries me- a very odd ‘elephant in the room’ situation! However I have also now been able to break away somewhat from focusing solely on my own situation & accepted that the party is not for me or about me. Hopefully this is a good step back into the real world & normal life. Will update you on how if all goes! 
In the meantime I have my 1st check up on Monday - 6 month post-op appointment with my surgeon. 
Sorry for rambling on somewhat but just hoping I can share some insight on ‘first moves’ after treatment. Have a good weekend everyone x

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 fab news !! 🙌 no drains wow .. I ad boob drain in 3 weeks but I did have mastectomy with full recon 😂n they can’t chance any fluid around implant . 

I had 2 nodes b4 chemo n after none in any out of 24 !! . thanks to herceptin n perjeta !!!! Whoop 🙌 hope it’s good for u tooo ! 
I can’t wait to exercise again... gone from 100 miles a week to nothing as needed leak to stop 🛑 I’m going stir crazy vegetating !!!!!! 
u might not need radio either if 100% response ... then we av decide whether we want it or not 🤣🥴🤔 got my meeting with radio consultant in 3 weeks ... that’ll b 8 weeks post surgery then to decide ! 
U on bisphosphates also ? 
keep going xxx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Sounds promising @higgi glad to hear.

My surgery is done and dusted. Feeling very good very little pain. My tumour was close to the  lymph nodes so they managed to remove tumour bed and 5 lymph nodes through one excision under the arm. No drains or fluid. I still have a pressure dressing on  but frantically exercising to avoid cording.

Lymph nodes were clear when checked but they want the detailed pathology report. This is good as had two lymph nodes pre chemo.  Hopefully will  collect on pensions after All.😁

Just RXT left to go oh and a year of herceptin etc.

I have hired a watt bike for a  year so on a mission to get back to my old fitness. On the whole recovery excellent but muscles definatly really weak despite yoga and cycling all through treatment in smaller doses  than usual.

Love to all I am taking less frequent postings as a good sign, we are moving on but lovely to hear how everyone is doing. 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone snd thanks @Pyewacket ! 
hope your keyhole surgery goes smoothly xx

Leak was only 27 ml thur so Cud just b seroma now but have stay on fat free n injections til next Tuesday n reassess then ... but less bandaging so gonna go jump in shower !!!!! OMG HEAVEN 🚿 

got specialist physio referral and appointment Monday .. ow bloody effecient is that !! 🙌  cording I’m coming for ya 👊

I started bisphospates on last chemo cycle back end March so due agsin sept . Started letrozole( tamoxifen for post ladies 😂 ) as an overkill 3/8 but might as well throw everything at it !!! Continue with her2 targetted for year so next herceptin n perjeta next wed ... that b 6/18 !!!!! Also my 1st injection of it 🙌

boob nearly fully inflated have 40 ml in 2x weekly ... not like the thought of the port etc but it’s all working ... one more to go then I’m 250 ml n a Bonny D plus 😂 

last anti biotic today hopefully ... only day 24 post surgery !! ☺️
but I’ve got my nail girl coming laters so it’s fab day !!! Bright orange mi thinks 😘

miss my exercise so much but WILL B BACK !!!!!  

Love to you all you super warriors xxxx

 

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Oh @Guest user thinking of you going through all this... insult to injury sums your current experience up exactly.

@donkeywoman my arm ached for nearly a week after my 2nd jab and i was a little hot/cold and poorly, felt nothing from the first jab. Glad to hear work is going ok, yes beware the travelling - I've felt far less tired last two days without the trip to Sheff and back for sure.

@Shine13 do you hope your surgery has gone ok, my sentinel nodes were the sorest bit by far! 

@grannyp glad to hear things are going ok, a party would put me into a panic in normal times let alone at the moment - but I'm sure you will handle it with aplomb

Final rads were on Tuesday yay! Skin still looking OK, slightly pink, and my breast (implant) and underarm are a little swollen, just fluid, nothing painful. It's great to have got past all the worst elements of treatment (well hopefully!)  I'm now waiting for them to remove my ovaries, although should be put on the injections to disable them in the meantime if there is a delay, then I can start on the bisphosphonates, and continue the Tamoxifen of course.  So nothing traumatic left to do (ovary removal is just keyhole surgery so don't expect it to be bothersome). Its really nice to take some exercise and eat well and know progress you're making isn't about to be trashed by surgery or chem or rads!

Hope everyone is doing well this week, Pye xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone thanks @grannyp @and everyone for your best wishes for me n this horrible chyle leak . I’m currently day 3 in of the injections to try stop the leak ... inject 3 x a day ... stings like hell and swells after !!! ( worst than the bone marrow or herceptin ones by far ) but if it stops it I can cope ! Already on Monday it had reduced to 27,ml from 140 b4 I started so hoping it’s done the trick ... off to breast clinic at 12 to reassess . Can’t wait to b able have a shower it’s 4 weeks next Monday !!!!! 
And u won’t believe it to add insult to injury I’ve now got the worst cording ever from arm pit to wrist ... so can’t move arm even if I was allowed to !!! So when leak is healed I’ll have that to work through with physio I guess . It was an accident waiting to happen as I’d had this complication n cudnt do any stretches . rghhhh 

keep going with those rads ladies and hope surgery ladies are feeling ok ( can’t remember your dates) xx xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone. Gosh, so much to catch up on. @higgi fantastic news on your results - the horrendous chemo was all worth it! But sorry that you are going through such a terrible time now. Hope that you are able to tolerate the drugs & they do the trick🤞
@Woodybird and @Pyewacket glad that the rads are going well. It definitely is the easiest part of treatment. The team were right in my case - any side effects were after the end of treatment but nothing awful- a bit of soreness & a couple of occasions when I was really tired. 
@Shine13 good luck with surgery tomorrow. Are you having a lumpectomy? And @PaulineS27 good luck with your surgery. Hopefully you won’t be in too long. 
@Karden hope the mouth ulcers clear up. I was fortunate not to suffer with them & can only imagine how horrible it must be. 
@donkeywoman glad to hear that work is going well. Funny you should mention the aching arm. I had the same after my 1st jab & when I had the 2nd the vaccinator warned me that it could ache for a few weeks as they had  heard of this happening to lots of people. And I hadn’t even mentioned that mine had ached for weeks!
And as for being overwhelmed in social situations!! I have been fine so far but yesterday I was invited to a family birthday party & it threw me into a complete panic. I usually love parties but the thought of this is terrifying me!! I had read lots about a loss of confidence after treatment but didn’t think much about it - until now. I will go as it is something I have to face & deal with & just hope that it will all be ok. 
I will be back at dance & yoga classes this week & that doesn’t worry me at all - can’t wait. And then a couple of days away to see family & old friends. So far that doesn’t worry me either - it was just this party that completely threw me. 
Anyway hope you all have a good week & that all treatment goes as well as it can. Take care everyone xx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 I was in for 2 nights, but my surgery was very late and I didn't come out of recovery until about 8pm, therefore they said they wanted me to stay a bit longer to keep an eye. A friend recently had mastectomy with immediate reconstruction using tummy tissue, she had to stay in for 4/5 days.

@higgi hope the drugs work without too many side effects 🤞

@Karden hope your mouth improves. I was recommended soluble paracetamol, similar to aspirin I expect. My onc did say I could use Bonjela, you might want to check that with your team depending where the ulcers are.

For me, I have just finished week 1 of rads. Despite my pasty white skin, no evidence of anything yet, but I've heard it tends to be week 2 when the skin is affected. As everyone says, this one's a doddle compared to the other 2 events in this cancer triathlon (borrowing Higgi's analogy).

Hope you're all having a good, if wet, weekend x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@higgi Thank you for the reassuring words, the support from this group is wonderful! 

I hope to get out in one day, I am having an over the muscle implant too as @Pyewacket told me about it and it seemed like a good option for me too 🙂

You are a real trooper and I hope that the drugs work with minimal side effects. You are nearing the end of this shitty journey! 

Sending love to you all x

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @PaulineS27 

@good luck with operation! Everyone I know just stayed in 1 night they like to get u out with drains in . If it wasn’t for my accidentally snipped thoracic duct , the mastectomy n total node clearance wud b fine ! I had no pain at all in breast site and have a tissue expander in over the muscle .. so I’m sure u will b in n out ❤️
Re the chyle leak : 

im still leaking n the swelling causes so much discomfort under the arm !!! But latest is that tomorrow they will reassess and start me on a drug that might stop it over 4 days if I can tolerate it ! It’s 3 injections a day with shit load of side effects !!!  Not looking forward to it but desperate so will try anything ! 
also need to have bloods done to check as I’m losing vital nutrients in the leak !! 

started leprazole too n hot flushes in abundance 🤣
continuing with antibiotics day 20 !! As I’m at risk of infection!! 

foob doing ok .. pumped up by 40 ml 🤩

Hope everyone else doing ok especially the mouth ulcers karden ! 
big hugs 🤗 xxxx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman I can not tell you how much better you have made me feel! I was totally getting wound up about 5 days in hospital, I know my daughter will be so worried and want a hug (she is 9) and they cant visit either. plus I was thinking it's going to be a hideous amount of pain if I cant leave for 5 days! Thank you for making me feel a little better 

I'm praying I get out quickly and i am such a baby about the anaesthetic and Operation, it's the unknown I suppose 😁

Take care and sending hugs xx

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 5 days?! I had a mastectomy and was out the same evening. And I was pleasantly surprised at how okay it was. Will think of you. I personally found the waiting for the op much harder than the recovery xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 

Thank you for asking, I'm doing ok. Bit apprehensive about the masectomy and a stay in hospital which they say can be up to 5 days 🥶 nope I gotta be out before that! I will go stir crazy 😂 

How long were other masectomy ladies in? 

Back at work, must be both good and strange xx

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 

My op is 28th of May, not looking forward to that to be honest but needs must. Good luck with your op too.

@higgi What fantastic news! fingers crossed that the duct thing resolves itself asap

@Karden Hope the mouth ulcers get better quickly

@Pyewacket 2 more to go!! 😘

Sending hugs to you all x

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Thanks @donkeywoman  hopefully day case but may stay in. Yes I find been with people all day quite tiring. I guess you have to build up your social stamina. It is hard to know what is treatment and what is menopause. I guess you have to pace yourself and don t expect to much, don t be hard on yourself.  Great you are back at work.

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 think our messages crossed. All the best for Monday - will you be home the same day? Ah, I hadn't thought of Herceptin affecting the taste. I can taste things but still have an unpleasant taste in my mouth. I thought it was a hangover from chemo, but guess it could be the Herceptin. My sleep is poor too - mainly hot flushes, which have increased since starting Tamoxifen. But I've not been a great sleeper for years, so it doesn't feel like a huge issues. And I do love a nap... x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

I've been quite behind on these threads as I'm now back at work and life seems a bit rushed again!

@higgi - wonderful news about being cancer free! But oh, that all sounds so uncomfortable and horrid. Let's hope it settles down soon and they don't have to do anything horrible to you... 

@Karden I could have cried for you when I read that you have mouth ulcers again. I remember when you had them before and they just sound so awful. I wonder if the aspirin gargle is helping at all? And it does sound as they may need to reduce your dose, doesn't it...

@Pyewacket - nearly done with the radiotherapy, good stuff. What do you have left after that?

@PaulineS27 - hope you are feeling okay? 

And @grannyp - wonder how things are with you. Hope you are still being able to get back to your walking and maybe even some light dancing?

It's been good to get back to work. I was expecting to find it tiring, but quite surprised how 2pm is like an alarm going off - must lie down! I have to factor in the 45minute drive as well, to make sure I am safe. I did work at home one day, but really feel I need to be in to see folk and start catching up with everything. There is only so much you can do with a computer and a phone. Generally I'm feeling pretty good. I have a very achey arm which seems to be from my 2nd Jab. I just spoke with a friend who is a pharmacist and she said she has heard of this with a few people - it might be that the needle may have hit a ligament and caused a bit of inflammation. Not a big problem and I'm sure it will pass, but it's yet another thing to wake me up at night! No big issues with the Tamoxifen so far - more night flushes I think, but nothing major. Herceptin jab on Monday. 

Does anyone else get overwhelmed quite easily? I am enjoying getting back to meeting up with friends and family, but it doesn't seem to take much for me to get a bit panicky and need to go somewhere quiet. I'm thinking that this is probably the combination of the breast cancer treatment and lockdown? Hope it goes away soon, as I find myself quite irritating at times!

Really hope everyone, especially those I've not mentioned, is doing okay, or at least as okay as possible xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Well no wonder they give us all this horrendous treatment it seems to do the job. Great news @higgi  just need to the sort the bloody duct thing but that is some news to pep you up and keep you  going.🥂

@PaulineS27  how are you? You must have had your surgery by now? Hope you are having a speedy recovery.

@Karden  I do feel for you back in chemo land at least you know you can do it and will be through the other side. So near the end.

@Pyewacket Glad radiotherapy is going well it sounds most peeps have found RXT not to bad which is great news I am not worried about that bit now.  I don t live to far from the centre which is a huge bonus.

Well I have enjoyed my treatment mini break,  under the knife on Monday but fairly minor,  compared to others.  I have a mind to tell my surgeon to watch out for the thoracic duct when she takes out the SA nodes.  

Still can t taste much so that must have been more herceptin rather than taxol.   Stomach still not right.  Slept through chemo but now the medically induced menopause has really kicked in so sleeping really badly going to put of drugs until I get  realky  desparate.

Hope everyone is doing well and  roll on some good weather.

Xx

 

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

@Guest user fabulous news that you are cancer free I am so chuffed for you! You seem to have as difficult a road as possible ahead despite that good news with everything going on though. Pressure bandage? Low fat diet? Fekk that it sounds like a nightmare, I whined enough about the normal post surgery swelling and my sports bra. Good job you have that sense of humour to keep you going!

@Karden mouth ulcers sound bloody miserable, hope they are able to reduce the dose as you mention.

I've just got two more radiotherapy treatments next week then that's that done and dusted. So far no problems with it other than tiredness. I'd expected to be physically tired, but am actually sleepy tired too. Not something to complain about in the great scheme of things though.

Hope everyone else is getting along OK, take care, Pye xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Thanks 🙏 

no it’s so rare there’s no reliable stats ! All I’ve read is 3 weeks ... then they have look at less conservative measures which my surgeon doesn’t want as there’s no evidence to say it’ll work or the implant will b ok with it as well ! 
check the gel out 😘xxx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Thanks 🙏 

no it’s so rare there’s no reliable stats ! All I’ve read is 3 weeks ... then they have look at less conservative measures which my surgeon doesn’t want as there’s no evidence to say it’ll work or the implant will b ok with it as well ! 
check the gel out 😘xxx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi I'm overjoyed to hear your wonderful news - 100% cancer free, the best news ever, no wonder you cried! I do hope your current situation improves soon though, have they said how long it's likely to take.

It's amazing that these drugs and surgeries do their job so well but pretty grim for many who have debilitating side-effects to deal with. I'm sure we will look back on this as a small moment in time. In the meantime, keep your chin up and keep us updated.

💜💜🤞🤞