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December 2020 Chemo Starters

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp thank you for the kind words, my mood issues lasted only a couple of days thankfully! Then i had period type pains although no actual period again, so slotting it down to my delightful PMS making itself known. You're so right about everyone thinking normal service will now be resumed...not sure how that is going to pan out, I think it's time to be a little more selfish going forward for me (or even more selfish depending on your point of view!). Do hope radiotherapy has been ok for you - look forward to hearing about that as I think you are the vanguard of the group on this one i think?

@donkeywomanI'll be going in on my motorcycle, can then go 'the pretty way' to try to enjoy the journey, and hopefully find a corner of the car park to fit in, so will make the best I can of the jaunt. (Do have a car but it will be a miserable experience with the traffic, so bike it is!). Hope the blood transfusion works wonders for you. 

@Kardenglad you've got through the surgery well physically. It's a lot to take in so quickly just since November. I think I was lucky in that respect to have been put 'on hold' between diagnosis and treatment starting for 7 months due to covid, gave me a lot of time to adjust to everything mentally. Not a big help to you at the moment, but be kind to yourself and feel free to have a break from being strong and just flop 🙂

@HiggiOMG you're got it all going on! Only bit i can help with is to say I had similar surgery -  took a few months for it to settle. No pain really from the mastectomy, the node clearance gave me more issues. I really want my 3d tattoo nipple when treatment is over, poor little blind booby at the moment. But overall really happy, don't feel at all like i've lost a breast.

I've been very tired after my final round but coming up to 3 wks since my last chemo and I'm feeling pretty ok. Bit miffed to find I'm having various aches and pains now. I go for my usual walk, which i've only missed a few times through treatment, and I get pains at the side of my knees. Woke up with a pain half way down my forearm last night. Nothing bad enough to take painkillers for, but has made me aware of the damage the chemo has done and it's going to take some time to repair.

Monday is my initial radiotherapy appointment, I should have done a lot of research by now which i haven't... that's the weekend reading sorted I suppose!

Hope everyone is bearing up with their various gripes, love Pye xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi 

You did well to find it at 6mm, I had three tumours, all of which have responded well to treatment and are no longer visible, I am also HER2+ but no lymph node involvement can be seen on scans and MRI at the moment. I find out in 12th re surgical plan but thank you for the explanation as mine is likely to be the same as you as the tumor is behind the nipple.

Do you mind me asking if your lymph nodes showed on your scans? 

Sending a virtual hug to you and best wishes for a great result xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 @It’s a mastectomy that removes as much as possible save the skin 🤣 then we have radiotherapy in case any in skin ! 🤩 

I’m having over muscle implant with tissue expander because radiotherapy will harden the implant and I’m likely to have it replaced later (12 months) snd if I prefer I can go under the muscle then as it will b a new plane  n will fair better . 

I have full monty despite my invasive tumour only  being 6 mm as I’m her2 and it had already got to 2 lymph. 
xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @higgi 

What is skin sparing mastectomy? I was told that a mastectomy would be the most likely operation, see consultant on 12th April but I havent had a discussion about reconstruction options.

Oh yes defo too much to have a two hour infusion day after. I'm keeping my fingers crossed for you.

It's all up in the air for me still re the next steps but I'm hoping for just Herceptin but on a positive at least my PICC line is being taken out in two weeks, its the small wins 🤣 xx

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27i get my results Thursday 6 may .. I’ll either stay on herceptin n perjeta or if still some active cells left I’ll go to kadcyla. 
surgery date for left skin sparing mastectomy incl nipple n total axillary node clearance is Tuesday 27 April !!! ❤️ 
was bit much av 2 hour infusion of herceptin n perjeta day after do put on a week to may 5 th 5/18 targetted ❤️❤️

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Karden keeping my fingers crossed for negative results and just herceptin hand for you. I wont know my treatment plan until post surgery too, no date yet as still two more weeks of chemo to go 

@higgi I so admire all the exercise you are doing! You have really been through the ringer but you have got this!  

Hope everyone else is doing ok x

 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

@Karden @Aw aw thanks so much ! Off to sign the consent form to chop it all away 🤣😘 big hugs u r all superstars xxx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@higgi What an horrendous time for you and you still seem to retain your sense of humour!

I hope things will calm down and you will start to feel better so that you can enjoy your time in Tenby. You certainly deserve to have a good time before facing your operation. You have a very positive attitude and I hope it will help you to get through the next phase.

You're an amazing inspiration to us all. 👍👍👏👏xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi sorry bin off radar for last 3 weeks ! Had final chemo n was rushed into hospital with high temp 38.8 2 days later .. had IV antibiotics within the hour ,., tests done ... results ... no signs of infection but as I was started on antibiotics I had to complete 8 day course ... they gave me diarrhoea as in going 50 x day !!!! I was discharged home after 4 days . 
then I braved going out on real bike outside not on my indoor trainer ... n fell off clipped in ... badly bruised left leg otherwise ok ... am I crazy or wat ... did 42 miles no wonder I fell off 🤣

I completed my lejog that’s 1083 miles in 80 days !!!!! 
hiwever I have horrendous bone pain n feel flu like everyday as day passes ... aching all over bout 4 pm ... they think it’s the targetted therapy doing it’s job !!

Well today is 3 weeks post last chemo n start of my 18 cycles of mini chemo herceptin n perjeta ... I rocked up thinking it was a quick infection only to find I was having 2 hour bloody infusion.., that’s wat I have now every 3 weeks for another 12 months !!! God give me strength... so yes I’m so jealous of you all ! No seriously I’m glad u are all getting to the end snd I know I will get there at some point . 
I had pre op assessment today too . Date26 April ... full monty too ... skin sparing mastectomy and nipple removal and ANC ( total axillary node clearance) with pre pec implant ... 5 hour surgery. 

thrn radio 6-8 weeks later ! I even have 2 hour infusion week of surgery... I CAN DO THIS 🙏🙏🙏 

so that said I’m looking forward to 6 days in Tenby on Monday ... calm b4 the frickin storm 🤣🤣🙌

hope u all well ... I will keep ya posted and try make u laugh when I can ... xxxxx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone, sorry I haven't posted for a while but I have been following you all. I've been feeling a bit up and down emotionally and it's taken me a bit by surprise. Everything is going well so far. Chemo done, PICC line removed, lumpectomy and sentinel node removal done. I'm feeling better than ever physically, the wounds are healing well and I'm doing my exercises 3 times per day. I think it's hit me that even though the main treatment is over (other than radiotherapy) life is not going back to normal anytime soon. The scars and the ongoing medication and injections will be a constant reminder. I may, with the help of my lovely wig, look perfectly normal to people in the outside world but when I take it off at the end of the day I see the version of me who has been affected by cancer.

I know things will get better but after being so strong since diagnosis in November I think it's all just catching up with me. 

It's good to hear that everyone is moving forward with their treatment. This forum really is an amazing source of support and sharing everyone else's experiences has been so helpful.

I have a telephone appointment next Tuesday with my oncologist and expect to find out if the tumour site and the lymph nodes are still clear.  They will then be able to confirm the next step which hopefully will be 5 days of radiotherapy and continuation of Herceptin.

Best wishes to you all. xx

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Good to hear from you @donkeywoman Hope the bowel issues are settling down and just keep reminding yourself that you don't have to go through the horrible side effects again. I am sure that once you have the transfusion your energy levels will quickly improve and you will start feeling brighter and ready to 'get on with life'.

@Woodybird Hope you get your radiotherapy schedule sorted without too much delay. I was told from the beginning of chemo that radiotherapy would start 4 weeks after the end of chemo and it has. I also had some node involvement, so have to have the area above the collar bone treated as well as the breast and that means 15 days of treatment rather than the more intense 5 days. I wasn't too bothered about the 15 days but now that I am starting it does look like a long slog ahead of me! But 3 weeks of radiotherapy is infinitely preferably to the 3 months of chemo that I did! 

Hope everyone else is getting on ok. Anyone else heading for the chemo finishing line? x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone - I've been a bit absent the last few days, struck down with horrible constipation... and a power cut which left me cold and awake the night before last. Things improving now, thank goodness for Laxido (in fact I'm probably going the other way now!). 

Lovely to hear from everyone, getting to the end of chemo and, for some, moving on to radiotherapy, meds etc. I'm only day 5 and don't get my blood transfusion for a week, so not expecting to feel too lively until after that. But it's just a good feeling to know that I don't have to go through these days again. It definitely makes the discomfort, sleeplessness, anxiety and revolting mouth more bearable! 

@Pyewacket I agree re the Chesterfield team and was also lucky with both the surgeons I met (both women). And even the trip to A and E was okay, it just seemed a shame that there are not shared records between Chesterfield and Sheffiled, apart from in oncology. Hey ho. Good luck with the travelling, hopefully the roads will stay fairly quiet. Will you drive yourself or have a lift? 

All the best to everyone, good luck to those imminently starting radio and hope you all stay warm and cosy this week xx

 

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@Pyewacket like you was grateful to have the PICC line, worked very well for me and glad I didn't have to get stabbed each time. Amazing how quickly that has healed, I thought there would be a much bigger "hole". 

@grannyp don't apologise for long rambling messages, ever. They've been important, for you and us ❤️ Your next phase has come quickly, hope it goes well tomorrow. I have my planning meeting in a week, but they said it will take a bit longer to set up so might not start until 3-4 weeks after that (I had huge lymph node involvement so they want to blast multiple areas to try to minimise future risk).

Had a lovely day out yesterday at a country park, even met up with some friends for a picnic. Great to see people again. Although the sun was brighter than anticipated, perhaps with more wind, and I've burnt my face. Just getting over the steroid pink cheeks and now I have sun pink cheeks and nose!! 🤣 

Been a bit out of breath and light headed this time, but the nurse did say last week I was a touch anaemic. Beef and broccoli on the menu today (and maybe dark chocolate 😉) 💪 

Hope you've all had a good Easter weekend. Easter bunny brought far too much to this house🐰

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. A horribly cold windy one here & I am currently staying tucked up in bed putting off the moment I have to take the dog out! 
@Pyewacket, sorry that you aren’t feeling as bright as you were. Every day is different for us, I think, especially as we approach the end of ‘active’ treatment. The future, no matter how good our prognosis, seems particularly  uncertain and we are having to face navigating our way into the next phase of our life. Whilst also dealing with our family & friends who just want us to be ‘back to normal’. Not surprising that our moods fluctuate so much! When does your radiotherapy start? Hope it goes well & that the travelling doesn’t get too bad. 

A huge thank you to those of you who have described me as a ‘ray of light’. I am pleased that someone has actually read my ramblings & absolutely delighted if I have been able to give even a tiny amount of help to others going through a similar struggle. Putting my feelings, fears and hopes into words on here has been of huge benefit to me. It has helped me to identify & clarify my thoughts & worries at times and I have always felt better after doing this. Apologies for the long ramblings st times but I am glad that some of you have read to the end & taken a little hope/comfort/whatever away with you. 
I have also been very grateful for all of your posts. We have all helped each other to get through this very testing time. 
I start my radiotherapy tomorrow- just want to get it over & done with really. And started on the Anastrozole tablets yesterday, so will wait & see what joys they bring!! 
Take care everyone & hope that any treatment this week goes well. x

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

@donkeywoman  Woohoo last chemo congratulations! Regarding the Chesterfield team - I've found them all fantastic (well bar one of the surgeons who thankfully didn't actually do my surgery in the end, but probably a personality clash rather than him actually being at fault). I read about your A&E experiences with horror - all the best intentions in the world there ends up being a disconnect in this sort of situation, luckily I've not need anything 'extra curricular' so have been spared that nightmare. Yes I do have the pleasure of travelling to Weston Park daily for three weeks from sunny ClayX for my radiatiotherpy, and yes I am far more anxious about the travelling than the treatment!

@PaulineS27  thanks! Flopped a bit since my post here the other day, have a feeling it's the thought of returning to work in the not-as-distant-as-I'd-like future. But may also be hormones as my periods have now skipped two months, or lets face it, just about anything at the moment. Thrilled to read your updates regarding your tumours.

@Woodybird  and @PaulineS27Regarding fur control I'm trying this Fur Inhibitor to see if it can keep my facial hair minimised, been so nice not to have to peer at my chin, tweezers in hand for the last few months. Read somewhere that men have trouble getting their beard back after chemo, so maybe there is hope for mine 🙂 Perhaps too much info... but also using it my undercarriage, happy to keep the landing strip in hand manually, but it would be lovely to have those parts that don't appreciate being trimmed or shaved inhibited hair-wise. Probably won't work but thought it was worth a shot for the price.

Oh and Woodybird - isn't getting the picc line out great! It's done a wonderful job and glad I've had it, but damn i was glad to get rid of it.

@grannyp  your updates have been so much a leading light for us all, you've been so open and honest about your doubts and fears (your initial fear to do chemo at all was so heart rending), yet such a great example overcoming them. Thank you.

Great to hear your update @dipitdee  sound like me you've been thankful for all those who have kept up posting here it's been such a great help. So sorry to hear about your brother in law, wishing for a positive outcome for you all.

Hope everyone is having a lovely Easter weekend, take care, Pye xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@dipitdee oh enjoy the Easter egg hunt, I did mine yesterday as my sister was off work and could do the running around 😂 after all the chemo my body doesn't always play ball, love the sound of rolling an egg down the hill! 

Not heard of Kadcyla and I dont see my surgeon until 12th April but I am assuming full mastectomy will still be in the cards even though tumours appear to have gone, but as you say it all depends on the residual tissue and lymph nodes, it must of been a difficult decision to make re lumpectomy and mastectomy.

Oh I do hope you can get to Scotland soon, I bet it is beautiful too x

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

Thanks @grannyp and @PaulineS27, it’s been a tough couple of days, especially since we’re so far away from all our other family. Can’t wait till we can actually go up to Scotland and be supportive in the flesh! @grannyp it’s nice to have choices isn’t it, but it gives you a lot to think about. At the time I was diagnosed it was supposed to be mastectomy first as there were 2 tumours (now one has gone) and because of where they were. I always thought I just want everything gone to give me piece of mind, but when lumpectomy became an option and I had time to think, the thought of a less invasive procedure with a quicker recovery time trumped my fears. And I think it was @Karden who reminded me that there’s no ‘better’ option in terms of long term prognosis. 
@PaulineS27 I’ve been told if there’s lymph node involvement detected it’ll be herceptin plus pertuzumab and if there’s any residual tumour detected in the sample after surgery it’ll be kadcyla. I’m preparing myself for kadcyla as although my mri showed a good response, it wasn’t a complete response. I’ve had another round of chemo since then but the fact my nipple hasn’t returned to normal makes me think there might still be something there. Who knows, I guess that could be fibrous tissue but better to prepare for all outcomes. 
Hope everyone is managing to enjoy the Easter weekend! We’re looking forward to an Easter egg hunt in the garden in the morning, followed by egg decorating then finding a big hill to roll said egg down. Does anyone else do that or is it just a Scottish thing? Hubby thinks I’m mad! Fingers crossed taste back to normal by tomorrow and I can indulge in a wee bit chocolate and a glass of red wine with my lamb roast! 

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Thank you @grannyp I am trying to enjoy the brighter weather and yes so pleased with MRI results

@dipitdee I am the same as you re post surgery treatment, but it's so we can make informed decisions when we know of there has been any lymph node involvement, at the moment it's not showing on any scans but they will double check. Sorry about your brother in law, sending a virtual hug your way x

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi @dipitdee So sorry to hear your news about your brother-in-law. Hoping that his prognosis continues to be good and treatment goes well. How cruel life is at times - it often seems that some people get so much thrown at them. To have this happen while you are still going through treatment seems so unfair for your family. 
But pleased to hear that you are feeling ok - apart from the cold - after finishing chemo and I am sure you will get some ‘normal’ days before your surgery. And glad that you are happy with the surgery decision you have made. I had surgery first and a lumpectomy was recommended, with only a passing reference once to the fact that I could consider a mastectomy if I wished. I was still in shock then but did know I wanted a lumpectomy if possible - I think I was kidding myself that less radical surgery meant that the diagnosis was less serious! In the same situation a few months on - & after chemo - I have no idea what decision I would make but know it would definitely be harder. 
Anyway good luck with the surgery and all subsequent treatment. 
And good wishes to everyone else. Hope you are all having a good Easter weekend despite the freezing weather. x

dipitdee
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone,

I’ve not been posting but have been reading everyone’s posts the last few weeks and it’s great to see people finishing chemo and surgery and preparing for the next lot of hurdles coming our way! 
I had my last chemo a week ago and was prepared for the fatigue to be worse again, but it’s not been too bad. I have however picked up a cold from my daughter that I’m struggling with. I’ve got surgery at the end of the month and I’m so looking forward to having some feeling relatively normal post chemo days before then! 
I’ve decided to have a lumpectomy in the end but I found it really difficult to get my head around as originally before the chemo I’d been down for a mastectomy. I think it was the needing radiotherapy part that really got to me. I’d got it in my head that it’d be chemo, surgery , done! (Apart obviously from the herceptin and the hormone therapy). 
Depending on the outcome of the surgery I’ll either have just herceptin, herceptin and pertuzumab or kadcyla for the next year but really hoping that after surgery life can return to a little bit more normality. 
We have had some bad news today though. We found out that my brother-in-law who is 48 has just been diagnosed with bowel cancer. It seems like they’ve caught it early and they don’t think it’s spread but it’s really knocked my husband for six. We’re just starting to feel positive about me getting towards the end of my treatment and now here’s my brother-in-law at the start of his!

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning all. And so much good news to read on here today. @PaulineS27 , great news on your mri. By the time your chemo is finished & you have your surgery the results should be even better. It must make you feel that going through the horror of chemo has all been worthwhile. And good luck with your final 3 weeks - they will soon be gone! 
@Woodybird and @donkeywoman - whoopee!! Chemo all finished. Hope that the side effects are minimal and manageable and that you are soon both beginning to see an increase in energy and looking forward to moving on. @donkeywoman, sorry to hear that your hb had dropped further and that you need some blood but hopefully that will quickly do the trick. 
@Pyewacket, great to hear from you and pleased that you are also finished and are now recovering and looking forward to moving on. Hope the lotions and potions work both for growth & inhibiting! And I have said it before, but I really do have huge admiration for all you ladies who have been able to almost embrace the hair loss. It was the one thing that I found just too difficult. 
Well, we are all now at or near the end of chemo and should congratulate ourselves on getting through one way or another. We have different routes to take now on our treatment plans but the worst part is over and the support on here has been great in helping us through this. 
I continue to have pretty good energy and am increasing my walking distance and speed, doing my prescribed exercises and generally being more active. Enjoying my last few ‘treatment free’ days before radiotherapy and hormone tablets start. Pity the weather isn’t good over the long weekend but I think we are all learning to take what is thrown at us in every aspect of our lives and get on with it as best we can. 
Hope you all have as good an Easter weekend as possible x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Thank you

My bloods were dropping by 0.5 per week which would of meant a blood transfusion by the last chemo session, however the nurse told me to eat a good quality red meat with a glass of pure orange Juice and you know to my surprise my bloods have increased for two consecutive weeks.......i was being quite strict with very little meat and no dairy, It is worth a try as it is the only thing I have changed and my bloods have improved, fingers crossed it helps you too.

I officially confirmed today there is such a thing as chemo sweats lol I nicked named my hot flushes, chemo sweats not knowing if its menopause but my consultant said it is actually a side effect of chemo 🙂 

Hope you are feeling better in a day or two and it must feel great to know you have had your last chemo....woo hoo!!!!! xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 that's great news, so pleased for you. Good to be getting the picc line out soon. And fingers crossed that the surgery sorts the rest 🤞.

I've had my last chemo today, phew. I am having a unit of blood the week after next as Hb down to 87. 

Feeling pretty tired and flushed (steroids) but manageable so far. Hope you are doing okay @Woodybird ?

And everyone of course. Good night x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Woodybird and all, I have had the results of my MRI and thankfully they are very pleased as my tumours are barely traceable, still no lymph node involvement on the scans so fingers crossed the biopsy after surgery will confirm no cancer cells. I also have agreement to get my PICC line removed after my last chemo in three weeks.......so pleased!

The next part of my treatment plan wont be decided until after surgery but I am hoping to avoid radiotherapy and Pertuzamab but there is light at the end of the tunnel.

Sending love to you all x

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Good luck, you got this 💪

@PaulineS27 you'll be there before you know it. Hope you're feeling ok after yesterday.

@Pyewacket I was going to say the same as Pauline - like the sound of the inhibitor, I too have enjoyed being hair free in certain areas 🤣 Let us know what you're using and if it works 👍

All went well yesterday. PICC line removed. On my steroid high at the moment, but sleep evaded me last night, so will take it easy today. 

Hope you've enjoyed the good weather. Hopefully we're too far south for this snow business but take care out there if it does arrive ☃️

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman you got this! last one woo hoo!! fingers crossed your bloods are good - I had my chemo today but next week marks my last cycle but I have it weekly so its 3 weekly session.

My bloods are holding out and are a little better this week after I started eating meat and drinking orange juice at same........ it's the only thing I changed after chemo nurse suggested it and bloods are better so I'm.hoping they hold out for the next 3 🙂 xx

 

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Evening everyone

@Woodybird - I hope chemo went ahead and all was as okay as possible. Hopefully you are resting now, but maybe you can have at least some feeling of 'that's it for that bit..'

@Pyewacket - oh, a fellow Chesterfield patient! How are you finding them? Everyone has been lovely and helpful, but I find the split between Chesterfield and Sheffield a bit disjointed sometimes. Like, you go to A and E and they can't see your chemo notes and the chemo team don't know you've been... You go to Sheffield for radiotherapy, don't you? Is that far for you? I'm lucky not to need radiotherapy (unless something has changed of course) - I live near Matlock, so it's a bit of a trek. All the best with all you have to come and of course hair regrowth, or not, as you prefer! 

It is good, as @PaulineS27 says, to hear of how people are doing as they come to the end. Bloods done today, so all being well, last one tomorrow. Big girl pants going on in the morning and I will try to stay cheerful (ish).

All the best to everyone x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Pyewacket 

So glad to hear you are feeling brighter and the posts on here have also kept me going on those down days

Do let us know how your lotions and potions work, I'm with you on the eyelash thing, oh how I miss mine 🙄

Enjoy the weather everyone, I hear it is going to snow next week?? 

Take Care

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

A huge thanks to all you regular posters, I've been here avidly reading everything every couple of days. However could barely muster the energy to keep family up to date, let alone input here too. I tend to withdraw when unwell. I've been silently supporting you all throughout, and taking great comfort from the posts.

Had my last chemo on 19th March, I've already had my surgery so just radiotherapy, biphosphonates, ovaries removed and 10yrs tamoxifen/AI to go, be a doddle after chemo though!

Today, to mark having recovered from my final session and hopefully now on the up and up, I've treated myself to some lotions and potions supposedly to aid hair regrowth (oh and one to inhibit too - thought I might try and use the opportunity to keep those parts I'd rather not get so furry again in check). Whether they will make any difference or not we'll never know, but it's nice to have a change of focus from have I got enough medications / food / dressings / strength to get to the otherside of the next chemo session.

Now the weather is warmer and I don't need a hat I'm enjoying terrorising the locals with my bald head which I've accepted just about now, but oh to regain my eyelashes. Although my recent research into the return of hair indicates alot of people lose their last straggling eyelashes a few weeks after their last chemo... grr!

Well wishes to you all, hope we are all going to continue using this thread through the rest of our tribulations.

Pye xx

PS: @donkeywoman  I'm at Chesterfield too btw, just in case you ever need to compare notes!

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman I'm so glad you said that @grannyp is your guiding light because that is just how I feel on these low days knowing I have four weeks of chemo to go........its the inspiration to know that the body does start to recover and feel more normal even though more treatment is to follow.

@Woodybird and @donkeywoman hope your final chemo goes smoothly 🙂

Hope you are all enjoying the sun, the children are living the garden xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all,

What a joy to see the sun and blue sky today... And to know that we can let the hens out on Thursday (they've been in a small run since early December because of avian flu, feels as though we have been sharing the feeling of incarceration!).

@Woodybird I'm so with you - keep dreading that they will say I need to delay a week - nooo! But like you, I feel that I'm okay, so hopefully we will both get it done this week. I will think of you tomorrow.

@grannyp really glad you are getting your energy back, good to get some reserves before radiotherapy. Hopefully that will go by quickly and smoothly. Do you feel more like you again now? You are my guiding light at the moment! 

Hope everyone can enjoy a bit of sun to lift the spirits xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone

Hope you are all doing ok and enjoying the sunshine - and the first bit of lockdown relaxation! 

@Woodybird and @donkeywoman Hoping that your final chemo sessions go well tomorrow and Thursday. @Woodybird, just remain positive that all will be ok with bloods for yours to go ahead. We always know that there is a possibility of delay, especially as we get near the end and our bodies are rebelling more against the dreadful poisons. And @donkeywoman, I totally empathise with wanting to run away. I had that feeling with all of my treatments but particularly with the last couple. I thought the last one would be different but I still would have done almost anything to avoid it!  

I am sure that you will both soon be bouncing back from everything that chemo does to us. We are undoubtedly all the same, thinking that after that final day in the unit we will miraculously feel 'normal', almost forgetting that we still have to go through the usual side effects! But you will soon start to have more energy, move on to the next stage (unfortunately, there is more treatment for all of us!) and look forward to rebuilding your life.

@Karden Hope your recovery from surgery is going well.

@PaulineS27 Hoping that your mri results are good and that your last few treatments go as well as possible.

And hoping that anyone we haven't heard from a while is doing ok with whatever stage of your treatment you are at.

As for me, my energy continues to be good. I am walking further and more quickly and start my 'exercise medicine' routine today. My days are definitely looking more like they did pre-BC and I am hoping to enjoy another week of this before radiotherapy starts next Tuesday and a big chunk of each day is taken up with that.

Feeling very relieved today - had a blood test yesterday to check on my liver function which had been elevated before my final chemo. Nobody mentioned it at the time and my treatment went ahead but my consultant mentioned a few days later that she wanted to check that everything was coming down. Although she stressed that she had no concerns and the nurses also confirmed that it was undoubtedly due to paclitaxel, that didn't dampen down my worries. Whatever the logic and the reassurance, we are always going to think that there is a problem. Anyway, the nurse called early this morning to say that all the markers were much reduced from the last test - one apparently is still slightly 'out of range' but has halved from the previous test. So no further action needed! Guess this was just a taster of the anxiety we will always be living with.

Anyway, now to do some work and then I hope to enjoy the sun for a few hours. Take care everyone! x

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13 its certainly been a long slog and the fatigue is sure kicking in, with weekly paclitaxel I'm not getting the white blood cell injections which I'm feeling 🙄

Hope you are doing ok x

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Just want to get it over with, have PICC removed, then feel some sort of normality. I know it won't quite be like that, but I can hope.  Nurse at the PICC clinic today was talking about people having to delay a session because of poor blood results. I think she was trying to remind me that it's not a given that Wed will be the last day, so I don't get too deflated if something goes wrong! It will be fine, I'm sure 🤞

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 that must be very tough chemo on top of MS that also causes fatigue.   I hope the next month flys by but it is getting harder.

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi Everyone,

@Woodybird Glad it's not just me with the factor 50

The MRI thing is silly really but it's when I realise I'm claustrophobic and can feel the panic set in 🤣 and suddenly you get hit by anxiety about results too 

@grannyp the wellness counsellor seems great, the mood swings do take is by surprise dont they 🙄

@Karden Glad the op went well and you are feeling ok x

@donkeywoman @Shine13 I have MRI for my MS and over the years my claustrophobia, which is only in the MRI tunnel has increased, silly really but I have to keep talking to myself to get through it 😂😂 I kept telling myself the surgeon needs the results to guide him, you can do this 🤣🤣

I needed to read this forum today, the fatigue hits hard and knowing others are coming through the other side gives me hope x

 

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Thanks ladies threads are very encouraging it great to see people coming to the end of chemo. @Karden  I  am up for a lumpectomy and SA node so sounds ok.  Sounds like there could be a quick bounce back according to granny p.  Pauline 🤞for your MRI results, I had one and they are not to pleasant.

I have had  quite a good weekend apart from usual tiredness/ funny stomach I just accept  these days.  4 more weekly taxol to go.

Hope everyone had a good weekend.

Xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all

@Karden so glad surgery went well and you are home and it sounds as though recovering really well. Yay, another big hurdle behind you.

@PaulineS27 I'm guessing the MRI was pretty horrible,  I've not had one but think I would struggle. Hope the wait doesn't feel too long..

@Woodybird you are a day ahead of me. I wonder how you are feeling about your last chemo? I half want just to get on with it, half want to run away! But at least we have some sunny days first, then it's getting chilly so we won't be missing much. All the best for Wednesday 

@grannyp I am totally with you,  give the wellness counsellor a go. I would accept any tips that might help with the mood ups and downs. You seem really good at getting on with things, however you are feeling. But it can be quite exhausting,  can't it, the dragging yourself up sometimes? Hope it's helpful and that tomorrow feels a better day. I agree, I imagine the emotional rollercoaster will continue...

Hope everyone is feeling okay this evening and that we can all enjoy some sun and warmth next week, with the sun cream in abundance of course xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

@Karden Really pleased to hear that surgery went well. Sounds like your surgeon did a good job. Brilliant that you have full movement of your arm. They seem to prepare you for not being able to lift your arm and that it will only improve with the exercises but I never had any problems - just a bit of tightness as things started to heal. Hope that you continue to recover well & you can soon look forward to ticking off radio as well. 
@PaulineS27  Fingers crossed for your mri results. All the anxiety returns each time we need to wait for results doesn’t it. I guess that is something we just have to live with. @Woodybird Only a few days left now until you also finish chemo. Hope your last one goes ok & that any side effects quickly disappear and you start to regain your energy etc. 
My energy is still pretty good. I totally expect to have days when it isn’t so good and I expect it will have a bit of a setback with radio. My mood is pretty grim today though after a really good phase. This whole rollercoaster keeps hitting us with a big dip just when we don’t expect it. Again I guess it is something we have to learn to deal with and live with. I had a really good morning out & about doing my usual Saturday morning shopping for the first time in ages but I did have to force myself out & I have had to make a big effort to just get on with stuff since I got back. Going to take myself off for a quick walk now & hope that helps a bit  Hoping tomorrow will be a better day!

I have been given access to a ‘wellness’ counsellor at the clinic where I am having radiotherapy and I decided to take up this offer. They can perhaps give some advice for dealing with the mood swings - and it can’t do any harm, can it. 
Hoping you are all having a good weekend. Enjoy the sun xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Surgery went well and I have no pain, just tenderness around the wounds. The lumpectomy scar is around 2inches long and extends from the edge of the right nipple going horizontally towards the breast bone with hardly any mis-shaping of the breast, the surgeon has done a great job and the underarm wound is also neat.

I was the last one into surgery on Thursday so it was a long day of waiting and by the time I came out of recovery the pharmacy had closed. This meant me staying overnight as I needed meds for the next morning. It wasn't bad though and I was back home by 11am just feeling tired after a broken night. I don't think anyone sleeps well in hospital do they?

I can move my arm freely and can extend it straight above my head so I'm very pleased with my progress. I will see the surgeon for a follow up appointment in 3 weeks then discuss dates for radiotherapy.

Glad to hear to that many people are doing well and that energy levels are improving for those who have finished the chemo.

Enjoy your weekend. 😊😊

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 factor 50 for me too, my skin doesn't know brown, only pink 🤣 Sorry to hear about claustrophobia, not what you need!

@Karden hope you're home and recovering.

@grannyp great news, thanks for sharing. That's quite a quick pick up in energy levels, so looking forward to similar results. Last one next wed for me. I've got radio appt next week, just initial chat I think, with a view to starting end Apr/early may.

Keep it up ladies 💪 x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman 

Oh yes we sure need some sunshine and definitely a factor 50 for me 😂😂 I burn at the best of times 🤣

Had an MRI today, I have discovered I'm clastrophobic 🙄 It feels like an anxious wait to get results now........it reallyvis an emotional roller coaster isnt it 

Fingers crossed your hair starts to re-grow quickly x 

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

That is good news @grannyp I so hoping to get back to normal quickly. That is very encouraging.  I have rxt after the surgery still a bit to go on cancer pathway.

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone. Hope you are all doing ok. @Karden hope surgery went well & you are now recovering at home. 
@donkeywoman less than a week now until your final chemo - good times! 
I am now more than 2 weeks post-final chemo and my energy the last couple of days has definitely reached a new level. I am walking much more quickly on my dog walks without getting out of breath and I am getting back to pre-BC levels of daily activity - not there yet but definitely better. Hope that gives done hope to those of you approaching the end of your chemo journey. 
Had my radiotherapy planning meeting & scan yesterday. All went well & everyone was so lovely & explained everything clearly. Just want to get on with it now but I will also enjoy the next 10 days of ‘normality’. Not sure how many of you are also going to have radiotherapy? 
Also had my zoom assessment for what they are calling ‘exercise medicine’. Just had to do a few basic exercises to show what movement I have. Now have a set of exercises to do at least twice over the next week. These will then change each week as I - hopefully!! - get stronger & have more stamina. All pretty straightforward & basically we just need to do anything to strengthen our muscles. The other thing I am going to be doing is increasing the distance I walk & the speed, even if only in bursts at first. 
Hope you all have a good weekend & that side effects are as kind as possible to you. xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Morning all. @Karden wishing you a speedy recovery.

I see an April chat room, sad there is a growing pipeline of women coming through the treatment pathway.  I am harassing anyone I know over 45 to get a mammogram. Hoping to pay it forward and someone gets picked up  earlier.

I had nt realised pertuzimab meant longer without hair. Good job I am happy with the wig looks better than my own hair. People can t tell the difference unless they are been polite!!!

I bet a wig in the summer is not and itchy. Has anyone got caught in the rain yet I bet that is a real problem and you can see all the mesh.

Just had Paclittaxel today only 4 weeks to go, so nearly there. Hoping with a dose reduction last 4 weeks will be bearable.  If my neuropathy gets worse on a lower dose they  might have to take 2 weeks off and extend to the end of April. That will be  horrendous.

Enjoy the weekend everyone.

Xx

 

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone

@PaulineS27 Hope your first few days post chemo have been manageable? and that @Karden surgery went as well as possible yesterday and you are now home and resting up. And fingers crossed that you both have 'just' Herceptin and hair will soon grow back. I will be having ongoing Herceptin too and definitely hoping for hair growth...

Hope everyone else is doing okay this week? And looking forward to some proper sun and warmth next week (we will have to slap on that Factor 30!) after a chilly weekend (up here in Derbyshire anyway). xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Karden 

Fingers crossed for no pertuzamab, I too would love to have some hair and eyelashes! 😂

I am encouraged to hear you line has been removed, I have become used to the line but would live to shower without the big waterproof sleeve 🙂

Sending positive vibes your way.

Had cheno today so I'm enjoying being at home looking out at the garden, although it needs a little attention lol 

 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27  I am home from hospital having had Herceptin for the last time via IV and the line has been removed. It was a straightforward process but it feels a little weird not to have it in my arm after 4 months of being familiar with it.

Re possibility of Pertuzamab, I'm same as you and may need it but I hope not as it's one that causes hair loss and I'm so desperate for my hair to start growing again. 

I have good veins and they could use a cannula if necessary but I'm keeping my fingers crossed that I won't need it and also for you. 

I'll be back on here on Friday. Hope you're all enjoying the sun, even if it's just through the window. X🌞🌞

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Karden sending hugs and thinking of you.

Its good to hear that your picc line is being removed, that is a milestone in itself 🙂 I asked if mine would be removed and consultant said no as I may need pertuzamab, I will question that as chemo nurses said I have good veins that could be used of needed.

Hope to hear from you on this forum when you feel up to it x

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 I am having herceptin and pertuzamab with chemo but will need herceptin and he said possibly pertuzimab post surgery? 

Radiotherapy has yet to be decided but I think most people have it so it's quite possible.

I am on countdown, these last few weeks seem like quite a slog but I am staying as upbeat as possible.

@donkeywoman makes me smile to see you at the end of your chemo journey x