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December 2020 Chemo Starters

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone,

I got the news I didn't want yesterday. I'm starting 4 more cycles of chemo (FEC) from next Thursday with Herceptin injections running alongside. This means that the last chemo will be on 1st July.

There was still a bit of cancer in the tumour that was removed but confirmation that the lymph nodes have never been affected.

They want to give me every chance of avoiding a recurrence in case there's a tiny cancer cell lurking somewhere that could have broken off the tumour.

If my tumour had been 100% cancer-free then its likely that  any break-off bit would have been too.

I have to ask myself whether I would have done better on the standard treatment of 6 cycles (3 of each type) rather than the 4 Docetaxel that I've had.

It means I'll have 8 in total although I can stop at any time. I'm going to try and complete at least 3.

I'm dreading dealing with side-effects again just when I'm feeling so well and my hair has started growing. I will also need to have the PICC line back in.

I'm trying to focus on the positive long term benefit but it's a real challenge. ☹️☹️

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

@Shine13 and @PaulineS27  - all the best for tomorrow and today - bye bye to picc lines and chemo!

@higgi - so glad you had a good time in Tenby and plenty of walking (70km!). But sorry to hear you've had a crash in mood. It sounded so familiar to me, that horrible feeling that we might go through all this and it might still come back. You always sound so positive and energised, but we all have to accept those times when it all feels too much, don't we. Hugs to you and hope it passes before too long. But do share how you are, if it is of any help, won't you? 

@Karden - hope you continue your good recovery from surgery. And any news about future treatment? Sorry, I know you were expecting to hear on Tuesday, but can't remember if that was yesterday or next Tuesday... Have been thinking about you.

Hope everyone is having the best week possible. I'm off to the hospital for a blood test today, but have had a pretty 'normal' few days - went to Bakewell for a Seasalt shop yesterday, and had coffee with a friend outside a coffee shop. That was so lovely!

@Pyewacket - have you started radiotherapy? hope the journey is okay and the roads not too busy

Hugs to all x

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@higgi  It is easy to loose perspective especially when your tired and having numerous cancer conversations. I just remind myself all these months of treatment has really driven up survival rates especially for her2.  I guess most off us were picked up with mammograms so small tumours even with lymph nodes are good.  My tumour was also near the nodes so I had two nodes next to each other.

@PaulineS27 hooray you have finished just two days left to go for me. Can t come soon enough. 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13 We are actually on our last week, my chemo is tomorrow with a PICC Line removal 🙂 oh the excitement of having a shower without a big plastic sleeve...........

@higgi The emotional side of things is a strange one isn't it, you try to stay positive and focused and then it hits you out of the blue. I am glad you had a nice break and after all the treatment you are entitled to a few down days, you have got this! I was just saying to my sister that as my Op approaches I think I will be nervous and a pain in the bum lol I love how you keep up with your exercise, it will help with your recovery I am sure. A year for HER2 will pass in the blink of an eye and on a plus note it has got to be better than chemo. Sending you a virtual hug 

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone lovely reading all your updates ! I had a lovely week away in Tenby ... 1 cycle that’s all as way too hilly but walked 70 k that week n drank a lot of wine 🤣🙌

then I suddenly felt very down like grief -wasn’t expecting that ... physically I’m absolutely ok but feel an overwhelming sense of loss n impending doom re future ... I was so looking forward to surgery but now I feel scared re not being able do much risk of complications etc . 
I keep worrying about results to follow n my year of ongoing infusions for her2 !!! 
then I thought more suffering and then I’ll probs get secondaries... 

trying stay strong but it’s hard to b upbeat all time ... and I get fed up of bone pain n suffering everyday ... grinds u down 

I will have surgery a week today then 3 weeks of radio 6-8 weeks after that . 
Think I got down cos everyone going out n I still isolate due to surgery 

I’m still exercising but having a feel sorry for self few days . 

love to you all . Hope it’s all going well xxx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 Yes are here yet last, my last day is Friday. The last 5 months have gone really quickly.

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman Glad you are feeling brighter and yes I am hopeful the Herceptin etc will be kinder too

@Shine13 We are on our final week of chemo!

@Karden I hadnt even heard of cording, @Pyewacket this is such a useful group, thank you for sharing your experience. My appointment for the surgeons should be in the next week or two 

Hope everyone has had a lovely weekend x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman I'm really pleased to hear that you're feeling so much better following the transfusion. 

Take it one step at a time on the exercise front and you'll make good progress over time.

Hope everyone has enjoyed the weekend. 🌞

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Pyewacket Thanks for your experience of cording, it's encouraging to know it's likely to heal.

Re radiotherapy, I will be treated at Sheffield too. Even though I'm waiting for the chemo decision on Tuesday I still have an initial radiotherapy appointment on Wednesday. I've found all the staff at Sheffield (Weston Park and Hallamshire) really fantastic. It's important when you're feeling at your most vulnerable.

Hope your visit to the dentist goes well, whatever you're having done. x

 

Pyewacket
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone,

Seems to have been an eventful week or so for most folk. Really appreciate everyone's updates. Thanks to @grannp regarding the 3 week vs 1 week raditherapy - I was a bit miffed to find out I had to do 3 weeks, thinking it was just Sheffield being behind the times, but your explanation makes sense in my case.

@Karden I had the cording, its a bugger, they say it's just your arm usually but i also had from breast up to my neck and from my armpit down my side to the bottom of my ribs too. Kept up with the stretches and massaging it, a bit uncomfortable, but it went in a couple of months. Just reaching my arm up high while sat or waiting for the kettle to boil a few times so you feel it 'pull' is all i did really. Hoping for the best outcome for you regarding the residual tumour and further chemo. Whenever we think the waiting for results game is behind us it seems to crop up again...

I had my initial radiotherapy consultation last Monday, i liked the consultant and the staff were gold standard as I've become accustomed to. I'm just worried about capsular contracture of my implant, I'd be so gutted to lose it after waiting out through Covid to have an immediate reconstruction. But I was aware of the risks, and was considering refusing the radiotherapy to the chest wall and just having my lymph nodes done - but the discussion in the consultation has made me come down on the side of getting the chest wall done for the sake of preventing recurrence. Which is after all why I'm going through chemo / radiotherapy / tablets / voodoo after all. 

So another week is upon us, I have the bloody dentist to go to...I'm anticipating this with more terror than chemo but it probably won't end up being quite as bad. Hopefully.

Pye xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello everyone, 

@grannyp hope you have a lovely time at the zoo - which one? Great day for it and good to get out there now that we can. @Karden - you are so good when you get this kind of news. I think I might want to spit my dummy out... But as you say, you need to wait for Tuesday and then take their advice. My fingers will be firmly crossed for you... 

Glad that @Shine13 and @Pauline are nearly done with the chemo. I may be making a big mistake, but I'm just assuming that the Herceptin (Tratszumab) and hormone blockers (Tamoxifen I think for me, but not confirmed yet) will be okay and I will just carry on as normal! Oh well, I don't want to anticipate a bad time, as I know I can be a bit neurotic and create my own side effects! 

I've had a good few days since the blood transfusion - I'm sure it has speeded up the recovery from the last chemo. I'm trying to increase my activity, particularly walking, each day. I had a go at yoga - couldn't even sit on the mat properly and downward dog was a definite struggle! 

Hope everyone is doing as well as possible and can enjoy the sun xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Thanks all, it looks like I need to prepare for 3 weeks RXT at least it is the last hurdle.

  It is a lovely day out and managed to sleep in untill 10.00, first lie in since chemo began always seem to wake in the early hours. 

This  cording thing seems very common I thought it was a rare complication. 

Bye for now

Niamh

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Morning everyone. Hope you are all doing ok. Regarding the 5 or 15 days rads, my understanding is that the 5 days intense treatment is now standard for those who just need the basic rads to the breast. For those of us with node involvement - or other complications - 15 days is still standard. Before my chemo started my oncologist did discuss that they are looking at a shorter treatment period for people needing the nodes treating as well as the breast but she didn’t know when this may happen. 
15 days is a bit of a drag if you have a relatively long distance to travel but I have just told myself that another 10 days is nothing really after the last 6 months! Fortunately I have still not suffered any reactions. Six sessions to go & the radiographers did say that any reaction/tiredness can peak around 10 days after the end of treatment. But so far so good. 
Enjoy the sunshine today if you have it. I am off for a family trip to the zoo! x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Woodybird Thanks for the info on the exercise website, I'll have a look at that. The surgeon says my arm movement is really good despite the cording so radiotherapy will not be a problem. Like you, I feel it more when I reach into a high cupboard and I can see the actual cord in my armpit. I'm hoping it will improve gradually over time.

I hope everyone is able to enjoy this sunny weather, I'm going to do some light gardening today and make the most of being outdoors. 🌞🌞

 

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

I'm having 15 sessions like @grannyp. Maybe it's to do with the cancer type and whether you have surgery or chemo first 🤷‍

I must admit, I was not brilliant with my exercises, just about managed daily, nevermind 3 times a day. But I'm pleased with my movement and is more then enough for the radiotherapists. However, just in the last week I have experienced some tightness in my wrist when I'm stretching, into a cupboard for instance, which I think might be cording. This is now 6 months after surgery (can it really be that long 😳). It might be that I'm using it more. I think I'll have to go back to doing the exercises regularly again (I stopped once I was comfortable getting my arm over my head and only do them now when it feels a bit tight). I suppose it just goes to show, you need to keep working at it.

FYI - I found an app called BAPS from the Welsh health service, which has some different exercises to those the hospital gave me. I found that quite good.

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Guest user Only one left now and you're done. I hope you enjoy your pub lunch. I have been told I will have 5 days radiotherapy so I think it's more common now.

I saw my surgeon yesterday and all is ok although I have some cording. I will carry on with the exercises and I've found some good ones online which I will add in. I've also been advised to massage the area 2 or 3 times a day and that it should clear over time. 

Has anyone else experienced this and what worked for you?

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Hi all sitting in the chemo lounge having my penultimate chemo. Yippee just one more to go. So close to the end. @Karden 🤞 sorry to here about your news a blow when your mentally set for the end. You have paid it forward as I 'll be mentally prepared. My MRI scan was clear showing both tumours and lymph node clear. Really unexpected as my oncologist had prepared me for only a partial respose due to triple positive which seems to complicate things

That is prob the best way to handle it expect the worst and be pleasantly surprised😁 I am generaly very optimistic thankfully which prob helps with these times.  But wil prepare for bad news following surgery.

@grannyp  Glad to hear RXT going well.   How many days is everyone having I was told the Marsden have a new concentrated regime  of one week but now they are saying I 'll have 3 weeks treatments.  I am going try and explore the week ong version that has the  same outcomes there is a paper out.

Well hope everyone gets a good weekend and starts to venture out.  I have an outdoor pub lunch for 6 on Sunday  very exciting. Will put the lipstick on  - realky a waste of time in COVID times.  Pencilling in eyebrows is hard I don t how the young uns pencil in there heavy even slugs.

Xx

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@grannyp glad to see you are half way through radiotherapy and doing well, the exercise sounds great, well done for getting to the gym for expert advice 🙂

@Karden I am keeping my fingers and toes crossed that you wont need more chemo, but if you do you got this! As you said, what is the alternative, it's to give you a bright future xx

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Evening everyone. So much to catch up on from you all. I haven’t been on here for a couple of days as been busy - the radiotherapy wipes out almost half the day & have had lots of ‘real life’ stuff to deal with. 
@donkeywoman hope you are beginning to feel the benefits of the transfusion & that your mood is holding up. I think we have said before that at this stage that the emotions do start to come into play & the reality of what we have gone through starts to become clear. 
@Karden you seem to have had a really good response to chemo. Hope the next few days waiting for further results passes quickly. You seem to be being very pragmatic about it & have the right attitude to further chemo if it proves necessary. Those of us having chemo after surgery know all about the possibility of those stray cells & we just hope the chemo has got them if they has escaped - we have no way of knowing but just have to trust. And as you say we have to do all we can for the future. 
For those of you wondering about hormone treatment, I started taking Anastrozole 11 days  ago & so far so good. The side effects do sound horrendous but as with chemo we have to be warned about everything. I had some aching limbs last week but just carried on as normal & exercising etc & the aches stopped after a couple of days. Also had a couple of fairly minor night sweats - but I occasionally get those anyway! Still early days but I am hopeful!! So don’t worry too much. 

@Woodybird I am also having bisphosphonate by infusion. Had 3 doses with chemo & will also have 1st ‘stand alone’ one in June. As you say, difficult  to say about side effects so far - was it chemo or bisphosphonates??  Good to hear that you have had your radiotherapy planning & will soon get that done & ticked off. It is nothing compared to chemo & surgery. 

@PaulineS27 & @Shine13 not long now until you both reach the end of chemo. It must feel frustrating seeing others moving in but we all have our individual plans tailored to us & our very personal diagnosis. Keep smiling - you will soon be there. 
I am now half way through radiotherapy & it is going well. No problems so far. The staff are lovely & the cream they gave me seems to be doing the trick as so far no soreness etc. I am also doing my exercise ‘treatment’ & am doing this week’ two exercise sessions in the gym at the clinic as they can now open. That was great - even though gyms are not my thing - & the advice & support is tremendous. Next week I see the wellness counsellor. 
Thinking of all of you at the various stages of your ‘journey’ & hoping that all the various decisions etc are not too difficult to deal with. Take care everyone xx


Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@Karden Difficult to know. My first dose was alongside my first chemo, so who knows what was causing what side effects, it was all new at that time!! Next one will be in June.

Keeping my fingers crossed for you 🤞

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Woodybird Yes, I agree. I will def have it if recommended as I need to do everything I can to prevent future problems. 

How are you getting on with the bisphosphonates or Is it too early to tell?

There are so many hormone inhibitors too but it's good to have options. Radiotherapy next, you're getting nearer to the finishing line, hope all goes well. xx

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@Karden Just seen your latest message. Sorry to hear that. But you're right, what is the alternative. They seem to have given a good explanation why it would be necessary. Try not to worry (!), you can't affect the result. They just want to give us the best chance possible for the future. If you have to do more chemo, so be it. It will be hard for today you, but future you will thank you for it. Much love x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Sorry, I seem to have posted the same update twice and I can't delete it. Apologies. 😟

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone,

 

I received a call today from my oncologist and have been thrown a curve ball.

 

There's a possibility of me having more chemo (4 x FEC) pending further lab tests on the tumour residue removed but I won't know for sure until next Tuesday.

 

She says I had a good response to chemo (4 x Docetaxel) as the tumour reduced from its original 25mm. There's a 4mm and a 1mm residual tumour removed at surgery but the additional tests will show if any live cancer activity. Even though all 7 lymph nodes are clear and have never had any cancer cells in them there's a possibility that a tiny amount of cancer too small to show up on scans could have moved via the blood circulatory system and could lay dormant in a bone.

 

Further chemo would kill this off reducing the chances of a secondary recurrence in the next few years.

 

If the additional tests show that the residual tumour has no activity then no more Chemo needed.

 

I now have 6 days to wait and worry and the thought of having chemo again fills me with dread but what's the alternative?

 

I can only hope that Tuesday brings good news. (Face to face appointment with the oncologist). ☹️☹️😟😟

 

 

Woodybird
Member

Re: HiRe: December 2020 Chemo Starters

@Karden I didn't recognise the names of those drugs you mentioned but the class of drug is the same as I'll have. I've already started the bisphosphonate, but I'm having zoledronic acid by infusion, so I'll be back to the hospital every 6 months for that. Not sure which oestrogen blocker I'll get but I don't think it's that one, I'm sure the onc gave it another name. 

I think I've stopped paying proper attention to the side effect list. The lists for chemo were never ending, and no one gets all of them. Just have to hope I don't get the "bad" one 😂

I've been measured and scanned for radio. Got 2 weeks now for them to set everything up before I start. Surgery was before chemo, so I don't have the comfort of seeing tumor shrinkage and knowing it has worked/done it's job. Just have to put my faith in it 🙏

Good to read all your messages. Keep on keeping on 💪 x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone,

I received a call today from my oncologist and have been thrown a curve ball.

There's a possibility of me having more chemo (4 x FEC) pending further lab tests on the tumour residue removed but I won't know for sure until next Tuesday.

She says I had a good response to chemo (4 x Docetaxel) as the tumour reduced from its original 25mm. There's a 4mm and a 1mm residual tumour removed at surgery but the additional tests will show if any live cancer activity. Even though all 7 lymph nodes are clear and have never had any cancer cells in them there's a possibility that a tiny amount of cancer too small to show up on scans could have moved via the blood circulatory system and could lay dormant in a bone.

Further chemo would kill this off reducing the chances of a secondary recurrence in the next few years.

If the additional tests show that the residual tumour has no activity then no more Chemo needed.

I now have 6 days to wait and worry and the thought of having chemo again fills me with dread but what's the alternative?

I can only hope that Tuesday brings good news. (Face to face appointment with the oncologist). ☹️☹️😟😟

 

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Shine13 Yes, as you say it was worth it for the shrinkage 🙂 and the tablets can't be as challenging as chemo, I am staying hopeful that the side effects will be kind to me 🤣

@Karden we could all stand next to each other and jump up and down to make music as we rattle with all the pills 😂🤣 x

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@Shine13 Yes, I hope we don't get the worst case symptoms, especially because of how long we need to be on these drugs.

I have been advised that they can try alternatives if it's too unbearable or give even more meds to counteract the bad effects. Great! We'll all be rattling!! 😅😅

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

I guess this chemo is good stuff great shrinkage @Karden @PaulineS27  so it was worth it.😉I have been looking into the oestrogen blockers they don t look like much fun,  fingers crossed we don t get the worse end of symptoms.  Can 't be worse than chemo I suppose.  

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden 

You are right, it's a big decision 😥 I'm hoping to get some further guidance from the plastics team as well as reading material. I should have the operation about 4 weeks post chemo.

Thank you for the info on the drugs, they have mentioned I will need drugs for bones and hormones too but again I will know more post op. The side effects don't sound great but as we all react to drugs differently I hope you dont get any of those side effects or mild very ones if you do 😘

 

Karden
Member

Re: HiRe: December 2020 Chemo Starters

@PaulineS27 I'm glad you're feeling ok about the surgery but it's a big decision re reconstruction options but I think you will have lots off information and support to help you make the right decision for you.

Re the meds I mentioned, Letrozole reduces the amount of oestrogen which stimulates my HER2 cancer to grow. I will be on them for 10 years.

Side-effects: aching and pain in joints and muscles, difficulty sleeping, low mood, fatigue, osteoporosis, headache, diarrhoea and more.

The Ibandronate is one of a group of drugs called bisphosphonates which will reduce the chance of osteoporosis and secondary cancer in the bones. This will be for 3 years.

Side-effects: gastric problems, nausea, joint and muscle pain, stomach pain, dental problems and more.

@donkeywoman Glad to hear you're coping and enjoyed the sun this morning.  As we always tell each other, it's one day at a time. 

 

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden 

Fantastic news about the surgery and no lymph node activity. how do you feel emotionally now you are most of the way there, asides from injections and meds? 

I feel ok about the surgery, well as ok as anyone would but its the reconstruction options that I am yet to make a decision about, I will see the plastics team within the next two weeks.

I wont know about radiotherapy and next steps until post surgery but I'm hoping for just Herceptin 🙂🙂 I havent heard of the meds you listed so not much use, be interested to see what others experiences are

Hope everyone is doing ok xx

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi @Karden , that sounds pretty good, they've got it all and now they are just going 'belt and braces'. And the chemo did its job reducing that tumour. I don't know what Ibandrinate is I'm afraid... I'm waiting to hear about oral meds... do you have a date to start radio? I'm pretty good today thanks and just take my mood as it comes! (For now). The sun this morning really helped.

Hope everyone is doing okay today xx

Karden
Member

Re: HiRe: December 2020 Chemo Starters

Hi everyone, I received a phone call today from my oncology team re update post surgery. It all needs to be confirmed after the MDT meeting on Wednesday morning but it's good news overall.

The residual tumour was removed and measured 5mm ( it was 25mm at diagnosis). It showed very mild HER2 positive activity but no furthermore chemo needed.

7 lymph nodes were removed and all non cancerous.

Future treatment - Herceptin every 3 weeks by injection until December.

Letrozole and Ibandronate tablets to start soon.

Referral for radiotherapy to breast only.

I'm nervous of taking the Ibandronate as side effects are concerning - does anyone have any thoughts on this? Letrozole not much better, there's such a lot to consider re possible side-effects and management of these, they just seem to suggest more meds to manage them.

@donkeywoman I hope you're feeling better following the blood transfusion and that you're less tired. How's your mood? I'm largely ok but but need to feel accepting about the meds still to come.

@Shine13 Only 2 more chemo sessions, you're nearly there! Hope you're feeling ok and coping with side-effects.

@grannyp How's the radiotherapy going?

@PaulineS27 Do you have a date for the mastectomy? How are you feeling about it?

Sending hugs and encouragement to you all. xx👏👏

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@higgi hope you are enjoying your break away

@donkeywoman Hope the blood transfusion kicks in and you feel better soon. 

@Shine13 Had my mastectomy confirmed today, my tumour was 26mm - now less than 2mm 🙂 and two small one 9cm and 7mm are gone. MRI 2mm tumour is barely visible.

There were some variations in measurements between ultra sound and MRI and no lymph node involvement seen on scans but they will be checked after surgery. My cancer is ER/PR and HER2 positive and high on the receptor scale so I dont think they are taking any. chances. Just got to make decision about reconstruction surgery.

We have got this! we might be stragglers  😂but its just two more weeks of chemo to go!! 

I think we are all numb at times then have breakthrough moments of being fed up of treatment! I think it is great you are exercising 🙂 my energy varies but some days just making dinner for the children and some housework is enough for me 😂

Hope everyone is doing ok x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hi all

Back from the hospital,  blood transfusion done. Feel tired but fine. Think it takes a few days to kick in! It was really strange being back at the chemo suite,  having an infusion but not coming home to bed full of dread about how the next days will be. I was hoping to feel elated but am a bit flat, which is fine. I did say I would roll with the waves...

@Shine13 I would not worry about the emotions, they will arrive when they/you are ready! I was pretty blank much of the time and think that it's only now that I've finished most of the treatment that I have the capacity to feel stuff... Have others found this? Wonder how you are feeling @Karden ? 

And I've been thinking of @grannyp and hoping that the radiotherapy remains manageable. Hopefully @higgi is having a good break from it all in Tenby and @dipitdee is enjoying some good days. @PaulineS27 how are you doing?

All the best to everyone xx

Shine13
Member

Re: HiRe: December 2020 Chemo Starters

Hi all

I am getting really bored of chemo and the weekly trips.  Just two more sessions to go.  I guess been bored is a good sign it means I don ‘t feel to bad.   As they reduced my dose because of the neuropathy I am not feeling too be bad just tired.  Still doing a lot of walking and cycling trying to keep my strength up.  I am defiantly a lot weaker.   

@donkeywoman Hope you are feeling better soon.  The emotional side and mood swings have n’t really hit me at all.   Only been in tears once.   I am wandering if I am in denial…………..I seem to be fairly happy and quite numb to it all- maybe deluded😁 .  Fully expecting it to hit at some point maybe after treatment like karden - hope you feel better soon to.

I feel like I am in slow lane still on chemo chugging away, but it really good getting up a heads up from all the posts as everyone seems to be ahead of me, except poor Pauline also stuck at the back.

@PaulineS27  @higgi  ……………… Your updates are Interesting as I have two tumours and a lymph node, but I am been offered a lumpectomy.   I am wandering if this will change now - I hope not.  I have an invasive tumour 23mm very close to DCIS of 7 mm.  These have more than halved in size and the lymph node has shrunk probably gone.  My team seem quite positive about the lymph node.  I am told I may not need an axillary clearance if there is less than three nodes involved in surgery biopsies. I won ‘t have a plan for another couple of weeks yet I guess. 

It is confusing with all the different treatment options.  I am trying to trust my team, or it will get very stressful comparing to others and wandering if there is a better option for me. 

@higgi  It was all over the Sunday papers last week that they have s/c version of Herceptin and pertuzemab and in some area’s patients will be injected at home.  My centre is getting trained up so hopefully   I won ‘t need the infusions.  I think I will probably be on Kadcycla though as fully expecting to have some residual tumour.  That will be a 3 weekly infustion for a year. I just hope I don 't feel to bad on it but will teh hormone and bone stuff I guess will tae a lomg time to feel "normal again"

 Love to all, ❤ good luck this week for treatments.  Getting  hard to keep track who is having what now.

xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

Hi @donkeywoman @the reason I have it by infusion is I’m on herceptin and perjeta and perjeta only available by infusion! Arghhhh 😂

Just heard I have to self isolate 2 weeks b4 operation that’s from Tuesday next week !!! But I’m in Tenby ... ah well I’m self isolating in the hot tub in Tenby ... wish I cud send u pix ladies 😌😜😘

love to you all 😘❤️

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@donkeywoman I think I am doing ok 😂 well most days. As you say it's such an emotional roller coaster and at moment i am focused on the end of chemo, I am hoping to get a more defined plan for surgery and then I can focus on that step. I have asked to be put on a counselling list for post treatment as like you, I do think the emotional side may need looking after post the physical treatment. Luckily enough the Nightingale Centre offer this support locally. I am on the list but can always decline it if I dont need support, however its good to know they could be there if needed.

Sending love to you all x

donkeywoman
Member

Re: HiRe: December 2020 Chemo Starters

Hello all, sorry for radio silence, I'm doing okay, but just seem very unfocussed and weary at the moment. Hoping to come round a bit next week.

Even though our treatment regimes are so different, many of your posts rang big bells with me. And others made me remember that I'm very lucky... (sort of,,).

@Karden oh, I so get what you mean about the emotional side of all this. I was diagnosed at the end of September but also feel that it's been quite quick.. My husband and I were saying just the other day how much has happened and changed in that time. Wow, no wonder we are all feeling a bit all over the place. People love to tell me how well I look (I don't, I'm just still chubby and they see me outside when I'm wrapped up and pink with cold!). I know they are being kind, but when you feel rubbish, it doesn't really help, does it? I've noticed that as I feel better physically, the emotional stuff kicks in more. I admire my brain for that, face one bit at a time was always my plan. I've not really worked out what to do with the thoughts and feelings, so for now I am letting them wash over me as they pop up. And talking to my closest friend or hubby as I feel the need. How about others? And the outside/inside bit also struck a chord with me. It's very useful to be able to put on a good show for the outside world, but can be very tiring and take its toll when you come back to the 'inside'. I have wondered how this will operate when I get back to work (just over a month, theoretically). Hugs to you @Karden 

@higgi - oh, you've been through a lot - and still you keep exercising! You are a force of nature indeed... And what a drag that you are having your targetted therapies via an infusion - do you know why? Yet more time sat in a chemo chair. But your fabulous attitude and strength will see you through.. And use us for some support when needed, won't you?? All the best for surgery - but more importantly right now, have a fabulous time in Tenby xx

@Pyewacket - I like the sound of the scenic route, but go easy on that motorbike, we all know what the roads of rural Derbyshire can be like! all the best for the start of radiotherapy - hopefully once you get going on it, it won't seem too long a time. And good thoughts about taking some time for you - not necessarily selfish, possibly just much needed?

@grannyp you are right into radio now - glad it is okay so far and roll on the end of it so you can get on with recovery. As always, your words are wise and interesting...And @PaulineS27 how are you feeling? I know you have lots to deal with , but you are always very good at responding to everyone else. All the best for the appointment on Monday, hope you have your list at the ready?

And everyone else, hope your days are going as well as possible. If it would just warm up a touch, we could really enjoy the spring xx

 

PaulineS27
Member

Re: HiRe: December 2020 Chemo Starters

@higgi Got to love a bit of positivity, your medical team seem wonderful and I am sure they know their stuff so are sharing happy vibes 🙂 Please keep us updated when you feel up to it x

Yes mine is considered multi focal too 🙄 however we are getting closer to the end of treatment which is a step in the right direction, I just keep ticking the treatments off as I go, think it's how I cope mentally 🤣

@Pyewacket A motorbike trip taking thecpretty route sounds like a fab idea x

 

 

grannyp
Member

Re: HiRe: December 2020 Chemo Starters

Good morning everyone. Just catching up on your posts. @higgi, what a lot you went through after your last chemo - you poor thing. Glad you are now recovering. Enjoy your well deserved break before moving on to surgery. Such a good idea to have some time away from it all. 
@Karden it is all so hard, isn’t it. I totally understand what you mean about the emotional turmoil. We are warned about the fallout when ‘active’ treatment ends but it is something we don’t think about until then - too busy just getting ourselves through the treatment both mentally and physically. As you say, you look like ‘you’ to the outside world & physically you feel good but that reality of what you have gone through & how that now impacts your life must hit you like a ton of bricks. And you have gone through it all so quickly - really good for you to have had all your treatment so quickly but no time to stop & think. Take care & be kind to yourself for a while. And also I would say to try to enjoy life - we have all been through enough ****!! 
@Pyewacket hope your radiotherapy appointment goes well. The final stage of this triathlon is starting for you - almost there! 
My radiotherapy is going ok so far - day 4 of 15 today, so still some way to go. My 1st session was around 20 minutes but the next two I was only in the treatment room for around 20 minutes. The radiographers told me the 1st would take longer as everything had to be set up exactly but now all programmed in, so they press the buttons & away we go! The breath holding is probably the worst bit. It isn’t that I can’t do it, it’s just that I am so conscious of not releasing any breath that it seems to go on for minutes, not seconds!! They have assured me that the machine will stop if I do release the breath but I am determined to do it. As a yogi of many years, I should be able to easily do the breath holds!! Anyway, any if you with the right side being treated probably won’t need to do this bit. 
The hour’s drive there & back can be a pain but I am actually enjoying having that time to myself. 
Will let you know how I continue to get on. Take care everyone & good luck with the ongoing treatments. And with the emotional turmoils xx

higgi
Member

Re: HiRe: December 2020 Chemo Starters

hi Pauline re the nodes ... yes one on ultra sound scan seen n the other on Mri once I knew  I checked n cud feel  it . I cudnt believe it I’d had no idea Unfortunately my 6 mm invasive tumour was to left of breast very near arm pit that’s why it had spread to node even so tiny ... I did have another 2 DCIS 2 cm but they not invasive so hadn’t spread any Wer .that’s why I’m having mastectomy as it’s classed as multi focal breast cancer .  It’s a worry when you know it’s in lymph but they were very positive saying 2/24 lymph is good 🤣🤣 got to laugh ! 

xxxx

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 🙂

@Guest userOMG 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