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October 2021 Chemo Starters

nicola2610
Member

Re: October 2021 Chemo Starters

@Jani62  huge congratulations on becoming a grandparent.  

Also, brilliant news about the impact the chemo has had on your tumours.  Seems several of us will be having surgery in March and can continue supporting each other.  

nicola x

Asharia
Member

Re: October 2021 Chemo Starters

Congratulations on the grandchild @Jani62 !🥂💐 Such wonderful news. As you’re at the same hospital do you live nearby them?  

Gosh, next week for surgery, that does feel soon. But better to get it all out as soon as possible.  I don’t know much about kadcycla as I’m HER-, but hopefully it won’t be as harsh as the chemo so far, and as you say it’s really good to have access to these treatments.

Take care,

Ash xx

Jani62
Member

Re: October 2021 Chemo Starters

@nicola2610 @Asharia 

I also saw my surgeon today! We really are travelling a similar path. The tumour has decreased in size around 80% so I am able to have conservative resection and mammoplasty using tissue from the right side of my chest, sort of under  the arm ( for me the flabby bit… I really do need to do some more exercise! ).

While I will have one breast considerably smaller than the other, my surgeon does not feel it will be obvious when I am dressed so no talk of surgery to the left breast at this time. I do have private health insurance and I believe I can get this reviewed, if I decide I need to, within in three years of cancer surgery.

I am seeing the cancer care physio this week and hope to have a date for my surgery within the next four weeks but it could be as early as next week! 

As the tumour did not completely disappear I have to have more chemo 
post op (Kadcycla 3/52). I am assured this has nothing to do with finishing the paclitaxel early. This did disappoint me as I thought it was just the two targeted therapies post op but I also realise I am lucky the state health system provides this extra levels of treatment to prevent recurrence. 

But the best news of all is today we became grandparents for the first time. We were at the hospital for my surgical appointment while it was all happening so we nipped upstairs to meet him. Needless to say he is the most perfect baby I have ever seen! ( don’t tell my kids!) Not that I am biased. 

It has been a good week!

Keep well everyone 

Jane

 

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia  So pleased you have also had a good appointment today.  

I forgot to say I’m having a radioactive seed implant put into tumour on my back a day or two before the surgery.  Partly because it will give direct radiotherapy to the small amount of that tumour which is left and partly because it acts as a kind of gps for the surgeon during surgery so he can pinpoint the tumour, the margins and remove them and the seed very accurately.  

 

Asharia
Member

Re: October 2021 Chemo Starters

Hi @nicola2610 ,

Sounds like a really positive appointment, and that you’ve got a good surgeon who understands where you’re at right now.  I can certainly understand wanting the quickest recovery time for now, and if you do want further surgery for reconstruction or symmetry later on it’s good to know the door is open.  If you can have surgery mid March, then hopefully by the end of March you’ll be feeling recovered and much better.

I had a surgeon consultation today as well coincidentally!  Less to discuss than yours I think, this one has always been scheduled as node clearance for me. Got some very good news though, the re-check of the pathology came back with plenty of clearance at the nipple so I don’t have to have that removed (I had a left nipple sparing mastectomy with temporary implant before chemo).  I’ll be in overnight on 31 March if my last two weeks chemo go to plan.

I still have radio to do after surgery, and then at some point I need to get rid of the temporary implant and have reconstruction.  I do have a high contralateral risk, so I’m currently planning a right mastectomy and bilateral diep at the end of this year.  But it is a long operation and a long recovery,so I’m not quite sure yet, something to decide once I’ve properly recovered from chemo.  

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia  I have had a really good appointment with the breast surgeon this morning.  The starting point “how are you feeling” really was a basic but most apt question for the discussion we had about surgery.  I have made my mind up to have a simple mastectomy, no reconstruction and obviously the cancer nodule on my back also needs to be removed.  In total 1.5 hours surgery.  Offered immediate reconstruction but I cannot have an implant because I’ve had radiotherapy before so it would effectively be tummy fat that was used - takes 6 hours. I said no thank you I’m so battered and tired from chemo.  Discussed options with good left boob and I decided that for now I’m going to leave it be.  I’m at no greater risk of breast cancer in it.  BUT they have left the door open for a reconstruction on right side, a reduction or mastectomy on left side at any time in the future nice I’m feeling better.  He said he understood that I wanted to just do what was needed to surgically remove the cancer and my reasons for that right now but he did not want me to feel that I. Time when I’m feeling better that all the other options were now closed off, they are not.  He said I may wait a while for those surgeries but they would definitely be open to me.  I feel that for me, how I feel right now, this was the best news.  Came away feeling ready for surgery.  I’m waiting for appointment and he is aiming for first or second week of March. My resting heart rate is improving, but still a tad high.

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia @Jani62 @louby_lou69 

Thankfully we had no storm damage and we are in the half of the village which did not lose power until 3am.  My eldest step son was not so lucky and I think he was without power from mid afternoon until 3am.  I am an Executor to an Estate and lots of fence panels out and sorting out boundary lines and therefore who was responsible for replacing the fencing.  All sorted this morning and work booked in for end of the week.  It’s amazing what you can get achieved from the sofa these days!  

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia  it is a change of career for me.  I’ve wanted to do it for so many years but it’s hard changing from a financial perspective but we finally got ourselves in a place that I could do it about 2 years ago and so I did the first year before this diagnosis and St Mary’s have kindly put me on hold for the year before starting the practical. 

Asharia
Member

Re: October 2021 Chemo Starters

@nicola2610 it sounds like you’ve had a really bad time with the neuropathy, I hope the hands do improve enough for you to do the podiatry degree. Would you be looking to move to podiatry as a career or is this something you’re doing for interest?

Great that you got out for a bit of a potter, that was something you couldn’t do a couple of weeks ago so definite improvement.  I’m looking forward to the sprouting hair 😆, some of my thin bits on top are a touch shiney so even a few mm would really soften them in.  It sounds like it’s likely to grow back white/grey though so I’m not sure what to do with that against the rest of my dark blond.  Might need to talk to the hairdresser about whether there are any gentle non-bleach dyes that would just tone it in. 

Asharia
Member

Re: October 2021 Chemo Starters

Thanks @Jani62 and @louby_lou69  , that’s really helpful.  I haven’t had anything quite like that, no shooting pain and definitely no clumsy feelings so I think I’ll continue to assume it’s either not there or just grade 1 which should resolve. The toenails aren’t lifting yet and fingernails ok.

Weather is more settled today, wet and windy here but more in the normal range for this time of year.  We had no major damage from the storm, so all good.  Very amusing photos from the o2 in London though, the roof ripped half off (no-one hurt). 

 

nicola2610
Member

Re: October 2021 Chemo Starters

@Jani62 @Asharia 

I still have neuropathy in every finger on both hands.  One finger on my right hand had permanent neuropathy from 8 years ago.  My grip on both hands at the moment is weak.  I drop things frequently.  My latest one being the yoghurt (unopened) on Friday and it hit the kitchen tiles and exploded everywhere!  I find holding a pen to write very difficult.  I can sign my name but could not write several lines - it doesn’t look like my handwriting.  I can use a keyboard better than a pen but I would say an hour of that at most and the tips of my fingers are sore.  I worry that it’s not going to improve.  I am willing it to improve every day but not difference yet, and my last chemo was 28 January.  I am doing a foot health practitioners course and if it does not improve then I won’t be able to complete the practical part of the course.  It was a stepping stone qualification to doing podiatry degree through St Mary’s University, so feeling a bit daunted by the prospect that something I’ve wanted to do for years I may never end up doing.  Would be one year of study being somewhat of a waste for me as well.  however I am for now remaining hopeful that things may reverse with the hand neuropathy.

As for my big toes, they feel like someone is giving them a tight squeeze and twist and they get very painful.  Again it’s neuropathy.  The other toes are more or less ok now, but the pain in my big toes will wake me up or mean I struggle to get off to sleep some evening with shooting pains and then it stops and I get off to sleep.

 

on good news - I have had been out of the house today.  I had to get a 21st birthday card for my niece so lovely husband drove me to a nice little retail centre in nearby village so I could have a little potter around and look at the cards myself.  It was lovely.  Out for half an hour and it tired me out but it was oh so lovely to be out.  @louby_lou69  I am impressed you are back at the gym.  Well done.  You so deserve that holiday, I do hope you go and really enjoy it.

 

The hair on my head had an overnight growth spurt.  Woke up this morning and it’s definitely sprouting 😂.  I even gave it a little bit of a shampoo in the shower this morning.  That felt odd, not done that since October last year!  I lost all my eyebrow and eyelash hair.  I have just a few eyelashes that are starting to grow through.  

Hope you all get to have the best weekend you can.  X

 

Jani62
Member

Re: October 2021 Chemo Starters

@Asharia  To begin with after the fifth dose I just had tingling in my toes and hot soles. After the seventh session  I had the odd sharp jab-like pains in my toes and the balls of my feet. Then the after session 8 I had a sleepless night while my big toes sang all night. Now they just feel half numb: like when they’ve been numb with cold and are “defrosting”. I was definitely a little more unsteady on my feet. I was also becoming really clumsy though I kept blaming this on my sore fingernails and not neuropathy.

Ten days later my big toes are feeling the same but I am assured it is likely grade 1 or 2 and reversible. It was a difficult decision and I feel both guilty and scared that I could not finish the whole course but the cancer care team have all been very supportive as have two colleagues who have had long term neuropathy post chemo.

My fingernails started to have rings following each session, and I hoped that was the full extent of the side effect but as they lifted they became painful and swollen. The cancer care nurses recommended vinegar or saline soaks, anti fungal cream but it just got worse. My GP ordered pathology for fungal infection which apparently is common but came back clear. They have responded very well to antibiotics but are misshaped and so ugly but they are growing out and I didn’t lose any. 

@louby_lou69 Take a holiday for sure! It is therapy for your well-being and as important as all the other therapies. 

I hope the weather is settling for you all 

Jane

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@Asharia 

We shan't be posting anything on social media at all. Although I know most of my colleagues would wish me well there's always one isn't there. I've had hospital appointments throughout every school holiday and spent the 6 week summer holiday recuperating from my lumpectomy so I think I'm due a few days away.

Neuropathy isn't nice at all is it, I started to feel some tingling from my last 2 chemos but my fingers feel fine now. Hope yours doesn't linger too long.

Asharia
Member

Re: October 2021 Chemo Starters

@louby_lou69 , definitely don’t feel guilty about having a holiday while off sick, the time off will help you recover better and is desperately needed for mental health. Teaching is very stressful, so you need to be in a good place before going back, not just about able to scrape through a day, otherwise you’ll just be off sick again shortly after.  Having said that, I’m not sure I’d tell work too much other than that you’re offline for a holiday to help recuperate, and certainly avoid social media posts dancing in a bar with a cocktail 🤣 because colleagues can be sensitive (although you so much deserve that and I hope you do it).

@Jani62 , I’m sorry you had to stop chemo early but I’m sure it was the right call.  Have to admit I’m really worried about this neuropathy side.  I think my hands and feet are ok, but not sure if I’m kidding myself just to get through and not being 100% honest with the oncologist.  I do sometimes have odd sensations, not numb or painful but sometimes tingly and sometimes a bit “muted” if you know what I mean.  But the symptoms aren’t consistent.  What were your symptoms that led to you stopping, was it the consistent numbness in the big toes?

My nails are also just this week starting to react, I’ve got a few sensitive toenails and two that are slightly discoloured. I’ll have the nurses take a look in case they recommend antibiotics, but from what I’ve read that should resolve after chemo, is that right? Just two more weeks to go so hopeful they won’t get too much worse. 

I’m lucky that my eyebrows and eyelashes are still there to some extent.  I do have to fill out brows with a brow pencil, and looking forward to being able to use mascara and eyeliner again in a few weeks to look more myself - I’ve held off during treatment to protect the lashes from pulling as much as possible.  So I’ll add that to the “looking forward to things” list!

louby_lou69
Member

Re: October 2021 Chemo Starters

Hi everyone 

We're in the Midlands so we only got the tail end of the storm, it did bring some trees down though. We are forecast snow today but so far, no sign. My partner works for a demolition/reclamation yard and he says they will be inundated today with people looking for tiles.

Well I am 10 days post chemo and starting to feel a bit more myself. My eyebrows are very patchy so when I go out I'm having to fill them in with an eyebrow pencil. Eyelashes  are practically  non- existent which I hate, so I can't wait for them to grow back. My nails have held out just a couple that feel tender.I've got a good covering of head hair now but it's still very patchy and I've still got that cancer look! 😞

I had my surgery last August so it's radiotherapy next for me. I went for my CT planning scan on Wednesday where they line you up and then put the three tattoos on. I'm having 5 intense sessions starting on the 2nd March, so three weeks to the day after my last chemo. The staff were amazing and great at explaining it all. 

Ive also re-joined my gym. I've been twice so far, taking it very slow and just building up stamina. It was so hard the first time but it felt so good to be working different muscles.

We've also booked a holiday to Egypt for some winter sun. I'm really looking forward to it but feeling very guilty that I'm going on holiday when I'm still off sick, but we haven't had a holiday since 2019, not even in the UK as both my partner and I have had ill health, plus Covid saw us cancel 3 holidays. I'm very undecided whether to tell my headteacher I'm going abroad or just keep quiet. 

I hope everyone has stayed safe from this awful weather and you all enjoy your weekend. 

Lou x

 

Jani62
Member

Re: October 2021 Chemo Starters

 

I hope you are all faring well through the storm. It has certainly made our news over here.

 @nicola2610 @Asharia 
I have had to finish my paclitaxel early as I was showing signs of grade 1/2 neuropathy. I am hoping my big toes rejoin me soon. They feel most peculiar but only occasional painful.  

I managed 8/12 doses but the team say I have made the right call to stop there. It felt quite unusual to walk out of the unit on Thursday, not having had chemo but yesterday was the best Friday I have had for a while! I am also looking forward to my tastebuds recovering.

My fingernails have been awful and I am now on antibiotics. All 10 lifted but they are at last improving and no longer painful. 

I have also been anaemic throughout and have had two transfusions to top me up. Sitting at 100 now so hopefully won’t cause any delays to surgery.  Still tired and tachycardic on exertion but      
hoping that improves now I have finished chemo. 

I see my oncologist on Monday, the surgeon on Tuesday, Herceptin Thursday: a busy week out in the big world! 

Plus side is I may get over to the UK to see my mother earlier! 

I have ordered Liz O’Rioirdans  book! Thanks for the the tip!

Stay safe everyone.

Jane

 

Asharia
Member

Re: October 2021 Chemo Starters

that is good service!. Excellent that you have a date to see surgeon, hopefully you can get a surgery date pencilled in or at least a clear path to where you need to be for them to go ahead. If you’re feeling this much better than two days ago things should keep improving quickly, surely once the chemo drugs are fully out of your system (3 weeks or so?) it must speed up.  

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia  After a little gentle nudge I have had a call back from the secretary and I am seeing the surgeon on Monday at 9am.  Think I will get my surgery date then.  Mindset is definitely changing to let’s get this part of the treatment done and get the recovery from that started, whereas two days ago I was thinking how on earth am I going to manage surgery.  I cannot physically walk the distance from front of hospital to breast surgery clinic at the moment so the Secretary is meeting me at main reception with a wheelchair and wheeling me round - there’s service for you! 

Asharia
Member

Re: October 2021 Chemo Starters

Love being pleased to mop the kitchen floor 😆🤣.  I know what you mean though, just being able to do normal things without worrying would be so nice.  I’m most looking forward to my taste buds going back to normal I think, followed by the anaemia easing off so I can run without feeling breathless (I’m not very anaemic, but where my white counts have held steady thanks to the filgrastim, my red has slowly but steadily dropped over the pac and is now 113 from my baseline of 130-140, which is most definitely enough to feel.  It needs to be above 100 for the surgery, so I hope it behaves!). Getting sleep back to normal would also be very nice, I suspect my husband is most looking forward to that so I stop waking him up!

It’s great your starting to feel ready for the surgery after the tough time you had. I would have thought you should have a date by now, have you had the appointment with the surgeon yet?  I’ve got my surgeon appointment on Monday and then surgery on 31st.  I thought they normally did surgery 3 to 6 weeks after chemo, but I know they wanted you to recover fully so I guess that’s the reason for the delay.  Hope you get a call back and some dates sorted soon.

Another big gust just now but no more branches down.  The big ones do seem to be getting more spread out though so it may be passing over now.  Stay safe everyone,

Ash xx

nicola2610
Member

Re: October 2021 Chemo Starters

@Asharia  well done.  Only a few more to go.  You are doing brilliantly.  My last chemo was on 28 January and it was only yesterday that the leg pain subsided significantly and my breathing is almost back to normal.  I cannot tell you how happy I was to be able to mop the kitchen floor this morning 😂 who would have thought such pleasure in every day tasks you take for granted until you cannot do them for months.  My husband has been great but I think he is not quite sure where the mop and bucket are stored 🤣.

 

I am also in a “red” and agree it is wild out there and the worst has not arrived yet. Husband did get into the garden last night and stowed away anything he could that he thought might be vulnerable.  We have a row of very tall trees within a reasonable distance from our house so hoping they all stay in place otherwise they could come crashing through our garden fencing😳.

Hope everyone is doing well.  I’m still waiting for a surgery date, but have left a message with the unit today for them to call me back.  Tbh I’ve felt so rubbish that was pleased I did not have a date to aim to feel well enough for surgery, but now I do feel like I’m on the right road to chemo recovery I feel better in my mindset to now deal with surgery.  

Have a lovely neighbour who has bought me some primroses for the garden and is even going to plant them in my plant pots for me at the weekend.  I love our garden so much, and she knows that as she gets to see part of it from her upstairs windows, so I think she’s being very kind as I’ve obviously not been able to get on with the garden as I would usually love to do.  

Asharia
Member

Re: October 2021 Chemo Starters

Phew!  Got another session ticked off, so just two more to go now. And made it back home before the worst of the storm hit.  It’s getting fairly wild out there, we’re in a red area.  Stowed everything in the garden as much as we can, one largish branch down so far and I’m hoping we won’t have too many more.  Anyone else seeing wild weather today?

 

hope everyone is well, and Lou that you’re recovering well from the chemo.  Are you starting to feel more normal now you’re a week past?

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69 @joeyhazza 

hi, I know it’s a lot to take in but honestly you will get there.

I had herceptin last time for 18 doses.  It’s so quick and I’m sure your employer will sort some arrangement - they have to!  

i also had Anastrozole for almost 7 years last time.  They extended it beyond five years for various reasons.  I’ll be honest - to begin with I had quite bad hip bone pain but after a while it eased off, I did have vaginal dryness but there are enough products out there that you can safely use.  Look up Liz O’Riordan on Twitter. She was a breast surgeon who has had breast cancer and talks greatly about vaginal dryness and what you can do to combat this.  I also watched a video she put up the other day about how to check your breasts.  I did not have nausea with anastrozole but we are all different.


I had Zoladex implants along with the anastrozole.  I have read before that some patients stop these because they find the injection painful.  My GP practice always put a bit of numbing spray on the skin beforehand and I can hand in heart say I never used to feel a thing and the injection goes it you hear a clicking noise when they deposit the zoladex implant (it’s smaller than a grain of rice) and that’s it.  Over with in seconds.  I know in 2020 the manufacturers changed the needle on the implant injection and it was supposed to mean that the spray was not required, or that’s what the nurses told me 😂 but I still asked for and was provided with numbing spray.  I think if it’s the difference between continuing with zoladex or not then they were happy to use it.  

I a, having herceptin with perjeta all in one injection (called Phesgo) once every three weeks for a total of 18 doses.  Last time it was just herceptin and perjeta was not available.  It can cause some temporary heart damage for some patients.  It did for me, and the first sign of that for me was my legs feeling like they were dragging me around through concrete. A very simple heart scan confirmed my left ventricular ejection fraction had dropped.  Cardiologist put me on ramipril which is a commonly used heart drug.  It worked within a few days and I was back to normal.  Once I had finished the 18 doses they took me off ramipril and my heart function returned to normal quickly.   I have a friend who has ongoing herceptin as she has secondaries and the herceptin suspends it where it is for now.  She has had over 160 doses of herceptin and regularly has her heart checks and to date no problems.  It really is a case of it can happen but not to everyone but they will safely check to see how your heart is managing.  

Hope this helps.

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@joeyhazza 

You're so close to the end now!
My school have been great so far. I teach in a little village primary and I've been there since 2001, so says a lot about the place. Very low turn over of staff. I know they will be fine with ongoing medical appointments.

My pay is now reduced to half which isnt great but luckily we have savings we can use if we need to. Im being re-referred to OH who I hope are going to help with a phased return the week before Easter. But it's not set in stone as I have radiotherapy next. 

Lou c

joeyhazza
Member

Re: October 2021 Chemo Starters

@louby_lou69 @I’m with you on this journey but am on zoladex rather than Herceptin.

It is all very overwhelming at times. I have round 7 of 8 chemo sessions tomorrow so off for my bloods shortly. I wasn’t aware of all the possible side effects of Anastrazole but that is what I will end up on too. Fingers crossed that it is kind to us both!

I lead HR in a MAT and just remember that your school has to make reasonable adjustments now as, like it or not, we are now automatically classed as disabled under the Equality Act so it is their duty. Therefore a reasonable adjustment will be to release you for medication on a regular basis, particularly when you know it’s coming. I know how hard it is with teaching.

Have a good Monday!

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@nicola2610 

How good is that feeling when you realise you don't have a PICC line anymore.

I spoke to my oncologist lead nurse yesterday for a telephone review. She said I will begin to feel less fatigued by 6 - 8 weeks, I'm hoping I start feeling more myself before then. She also talked about my ongoing Herceptin injections, I have 15 of these to go every three weeks. Apparently I can have them done at home (or work) as there is a company that are employed to do them. My issue is that I hope to be back at work in April so will have to come to some arrangement with them. They only give you a morning or afternoon slot, not a specific time which isn't really convenient when you're a teacher.

She also talked to me about Anastrozole, which I'll begin taking in a couple of weeks for the next 5 years. She advised me of the side effects, joint pain, nausea, vaginal dryness etc. I'm also going to have something called neratinib once the Herceptin injections have ended in December. I'll take this for a year and it's another newish tablet to tackle the PR/HR HER2 aspect. The trouble is this drug can give you diarrhoea initially so other drugs are given to help with this until it settles down. In addition to all of this I will I continue to have heart scans as Herceptin can damage your heart and also a bone density scan to check my bones are ok as the hormone tablets can give you brittle bones.

I came off the phone feeling like my head was going to explode. I'm so grateful for all that is available for me but it just seems like this will never end. I know things will begin to settle down into more of a rhythm soon.

Once Im back at work I'm sure school, the kids and the routine will push the last 10 months further away, not that they will ever disappear from my mind. 

I hope you all have a wonderful weekend what ever you're up to. 

nicola2610
Member

Re: October 2021 Chemo Starters

Phesgo number 4 today and my PICC line was taken out.  Still waiting for a surgery date but will ring them early next week just to make sure they have not forgotten me 😀

louby_lou69
Member

Re: October 2021 Chemo Starters

The 5 radiotherapy blasts were set last October at my first oncology appointment. Reading round it, it seems it's standard pretty much everywhere and is just as effective as three weeks.

My cancer was stage 2 and no lymph node involvement so not sure whether that has any bearing. Speaking to other people they say that radiotherapy is a doddle compared to chemo. I'm eager to get going with it though.

Ive got a list of house type jobs I need to do to keep me busy, it will be strange to not have that weekly cancer centre routine to form my week. But, as I told the staff as I handed over a bag full of thank you cakes, as much as I've loved their company I don't really want to see ward 202 again! 

Lou x

 

Asharia
Member

Re: October 2021 Chemo Starters

Yay!💃💃🥂

Well done for getting to the end, I hope you start feeling better really soon after this last one.  So you’re having the fast raisin over just one week, did you get an option for that vs the longer three week course or is it the standard now?

Take care, and enjoy that gym,

Ash xx

louby_lou69
Member

Re: October 2021 Chemo Starters

Well today was my last chemo, I really can't believe it. It all went well and I've had my PICC line out too and am now resting on the sofa with a brew.

Felt so good to have walked out of there even though I'm back next week for my CT planning scan for radiotherapy. Radiotherapy due to start in 3 weeks and hoping I get my confirmed dates when I go next week as we want to have a little holiday once I'm finished with radiotherapy. 

Im set to have 5 sessions of radiotherapy to the whole breast - my oncologist said because my cancer was predominantly lobular, zapping the whole breast would be the way to go. I've been moisturising twice a day for a couple of weeks.

I also plan on re-joining my gym next week and starting back slowly. I haven't been since Feb 2020 when Covid began, so it will be great to do something other than walking. 

Lou x

Asharia
Member

Re: October 2021 Chemo Starters

That’s really good to hear @nicola2610 , I’m glad things are improving for you so quickly.  As you say it’s only really 3 days post-cycle, so hopefully the little improvements will keep coming. 
Ash xx

nicola2610
Member

Re: October 2021 Chemo Starters

Hoping everyone has had the best weekend they can depending on where you are on your chemo cycle.  I’ve had some small improvements in my dreadful breathlessness over the weekend, and my dizzy head has stopped being dizzy.  I’m on day 10 after my last weekly chemo, so really I feel like I’m on day 3 free from a chemo cycle and I’m so pleased to say that the little improvements are coming frequently and in a positive direction.  

Asharia
Member

Re: October 2021 Chemo Starters

Hi Jane,

I’ve already had a mastectomy, and my PET and MRI scans before chemo were clear so I haven’t had more scans during chemo as there’s nothing to track as such.  Initial biopsies and scans showed clear nodes and a 17mm lump, which would probably have not required chemo depending on oncotype results.  So they only did sentinel node removal and being HER negative the protocol is surgery first.  But they found at surgery that the lump was bigger, had vascular involvement, and there was cancer in two of the three sentinel nodes they removed (one 1.1mm, one with micrometasteses).  My genetic tests also came back positive. So my risks went through the roof, and the plan changed to chemo, radio and full axiliary node removal.  They chose to do chemo first to get it started ASAP rather than risk a further months delay to do the nodes up front. So my 31 March surgery is node clearance, I’ll then have radiotherapy as well, they say about six weeks after surgery so mid may once I get back from holiday I think. 

I’m not actually sure when the next set of scans are, I’ll certainly insist on another PET and full body MRI before my third surgery, which will be contralateral mastectomy and reconstruction.  I’m not going through that much recovery time without assurance there’s no recurrence or spread at the time, and I’m very high risk for it given the nature of my tumour and family history.

I think you were waiting for a scan and the results of your tumour marker tests.  How are those going for you?

it did all seem so far away in October, just goes to show that we all do manage to get through it in our different ways.

Take care,

Ash

Jani62
Member

Re: October 2021 Chemo Starters

Hi@Ash

Well done for getting through number 8… it must feel good to have a surgery date. Have you had any other scans to see if it has reduced in size?  Do you have to have radiotherapy after your surgery? 

We are all nearly through this part of our treatment. It seemed so distant back in October.

 

Keep well, everyone

happy weekend

 

Jane

Asharia
Member

Re: October 2021 Chemo Starters

well, that’s no 8 done, just four more to go now.  Today went fine, although I found it tough for some reason, just felt like a real slog.  I guess it’s just attrition and a bad night last night.  Lou, you must be down to the last one, that must feel fab.

 And today I got a surgery date arranged for 31 March which I’m pleased about.  That does depend on the final 4 going smoothly with no delays or new side effects, as it a day short of 3 weeks after my “official” chemo end (they count from the end of the cycle not the last dose, is that what everyone’s does?).  They had a patient test positive for COVID on my unit last week apparently which really scared me, I really don’t want it pushed back as I’m desperate to go on holiday in early May.  But today’s test was negative so I will keep pretty much isolating and keep my fingers crossed I don’t get it.  

hope everyone is well, take care of yourselves,

Ash xx

Asharia
Member

Re: October 2021 Chemo Starters

Congratulations on graduating!  That must be a relief to be honest given everything you’ve been through. I hope you can rest up before your surgery and feel a bit stronger.

 

Take care 

Ash xx

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@nicola2610 

That's a relief isn't it. Your body has just had enough. Hope you have a few weeks rest and recuperation ready for the next bit.

nicola2610
Member

Re: October 2021 Chemo Starters

I have finished chemo!  My last weekly pax was due this Friday 4th February but my side effects, particularly the heart rate at rest of 119 bpm and the acute fatigue, and my oncologist has said no more chemo.  I am honestly relieved.  Was wondering how on earth I was going to do the next one even if they gave me another week to rest before doing it, but oncologist not even happy to do that.  So I’m finished with chemo.  Next step surgery and obvs surgeon wants heart rate down so they are giving me a bit longer than the usual three weeks before taking me in for surgery so still waiting for confirmation of surgery date.

Asharia
Member

Re: October 2021 Chemo Starters

Hi @Jani62 ,

I really hope your tumour markers are going down on Thursday and that the scans show the lump is responding, good luck with the appointment. It’s so horrible waiting for these results.  Im hoping to get my next surgery scheduled in this week, I know I’m going to be a mess waiting to find out if any of the remaining lymph nodes are still positive but trying not to think about it yet.


My fingernails are ok for now.  Not in great condition, a bit brittle and ridged but thankfully not painful or lifting.  I do have one completely black toenail which has split and fallen off once already, but the new nail underneath is still black and ugly.  I think that one is a combination of running and chemo - I injured it slightly around cycle 1, and I just don’t think it’s had any chance to recover despite me wrapping it very carefully for every run since then.  Hoping it will eventually grow back once this is all over. 

I have been anaemic after week 3 and 4 paclitaxel, but that improved in the last two weeks now I’m back on the Filgrastim.  Which is a bit odd as I know that’s only really meant to help white blood count, so might just be a coincidence I guess!  But even though my levels are “ok” I can feel it hugely.  I’m still running, but very slow now and do get breathless easily.  It may be silly to keep trying, but it’s psychologically very important to me as it’s one of the few things I can control. I’ve done 20k a week all through chemo so far, I’m determined to finish. 


I’m with you on tha fatigue though, and finding it really hard to cope with as rest or sleep just don’t help.  If anything complete rest seems counterproductive for me, I feel worse when I’ve sat on the sofa all day.  But I am now really struggling, I’m still currently working three days a week and not sure that I can keep going for the last six weeks of treatment.  Just wish I knew what the best answer was!

Take care, keep well and we will get there together,

Ash xx

Jani62
Member

Re: October 2021 Chemo Starters

Has anyone had issues with fingernails? Mine are awful, they started while on the AC with red then white lines and were tender, as if I had shut them in a door.

Once I started the paclitaxel, they started to lift away from the finger and now a couple have become ugly and painful. I had been doing recommended vinegar soaks when they started to lift but now I am on topical anti fungal cream and oral antibiotics.  I know I was washing up without gloves (I can hear my mum nagging me) and it is so hot and humid so fungal infections are common here. 

@Asharia we are on a similar timeline. I have 6 more paclitaxel to go and see my oncologist on Thursday. I am hoping my tumour marker has not risen again but if it has, I really want to consider having an ultrasound/ mammogram to see if there has been expected progress and if not, having the surgery sooner than later. 

I also have incredible fatigue and seem to be able to fall asleep often. Most unusual for me. I am again quite anaemic and have already had two transfusions but my GP thinks I will be having another one this week. Have any of you had the same problem? 

So glad  to hear some of our group  have nearly finished chemo, October 21 seems a long time ago now. It has been amazing to have people to talk with sharing experiences and making the whole thing more manageable. 


Keep well everyone, Jane

bookish
Member

Re: October 2021 Chemo Starters

@louby_lou69 So glad the O'Keefes has given you some relief! 🙂

I've been off chemo now since mid-November (starting new regime next week), and my hair is definitely growing back! I shaved it again once before Christmas, as it was just pale fluff, but now it's a completely noticeable dark couple of millimetres - with more grey than I remember having, perhaps. Okay, no, I was definitely going quite grey! 😉 The one 'meh' is that the very front seems a lot sparser than the rest. I'm hoping this will sort itself soon. Maybe I just rubbed that bit a bit more when it was going?

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69  Oh the fatigue!  I’ve been predominantly in bed over the weekend.  Having a shower for a few minutes wipes me out!  The stairs 😳, well let’s just say 12 steps and I have to pace myself going up them and sit down on the bed when I get up them!  But, just one more chemo to go, that’s what I keep telling myself.  

Asharia
Member

Re: October 2021 Chemo Starters

Hair is a weird thing, isn’t it.  My head hair, which was still looking really full after EC, has started shedding way more on Paclitaxel.  But my body hair is starting to grow back in places.  I can’t work out whether the head shedding is getting the post-chemo cold cap shed out of the way, or if it’s just being annoying on purpose 🤣.

I’m glad @louby_lou69 and @nicola2610 that you’re both almost done with the chemo.  I’ve still got 5 to go, but it’s starting to feel the end is in sight, had a conversation with the oncologist about surgery dates this week so tentatively starting to plan the next stage.  I’d love to know when your taste buds recover.  I’m so very fed up of everything tasting, well, meh.  Really looking forward to being able to enjoy some tasty food and a nice glass of wine! 🍷 

 

louby_lou69
Member

Re: October 2021 Chemo Starters

@nicola2610  you're not crazy! Mine is growing back too and is a horrible dirty grey/white mix. It's not healthy hair yet and if I pull a straggler the hair comes straight out. It's going to be an interesting 12 months with the hair growth.I have 2 paclitaxel left one on the 2nd Feb and my LAST one on the 9th. I just cannot wait. The fatigue over the weekend is just awful.

@bookish  I bought some O Keefe cream for my cracked heels and oh my goodness it's amazing. I've been using it for a week and it's made such a difference. Thanks for the suggestion.

nicola2610
Member

Re: October 2021 Chemo Starters

Call me crazy, but … I think my hair is starting to grow… it feels a bit more bristly.  Still got one more chemo to go on Friday 4th February. 

louby_lou69
Member

Re: October 2021 Chemo Starters

@nicola2610 Good luck with your running. My partner and I have always been into walking, gym and general fitness - we actually met in the gym 7 years ago. It will be good to walk up some hills and not feel breathless. But like you say, your cancer returned, it's such a lottery isn't it.

We have a holiday to Kos, booked in 2019 for 2020 and was then moved to 2021 but my partner was waiting for back surgery and I got my cancer diagnosis so it's now set for August this year. My son and his girlfriend are coming too. They were both 16 when it was booked now they will be 19 when we go😂

We're hoping to fit a holiday in, in April if my oncologist okays it before I go back to work and everything is ok. We have both had health issues and desperately need a break and mainly something to look forward to.

nicola2610
Member

Re: October 2021 Chemo Starters

@louby_lou69  I am looking forward to being able to get back to running, after I’ve had surgery.  I was running regular 5k in the last few months before chemo started but for many years before that I had got in to walking and would often walk 20,000 steps each day.  

My plan going forward is to get back into the running.  My husband and my sister in law used to go with me and we really used to enjoy it.  They still go.  My husband has worked up to doing 10k 😳 so I’ve got some catching up to do. 

I am also going to add in some resistance training with light weights as soon as I can safely do that after surgery.  The research on exercise shows that a combination of resistance with cardio training has the better outcomes for cancer patients, but I always caveat that for myself with it is a statistic.  I had shed five stone in the eight years between my two diagnosis, and led a very active lifestyle, and ate well, and I have not drunk alcohol in over 20 years.  It came back.  I broke down with the surgical consultant when I was first re-diagnosed and said I’d worked really hard to lose weight, exercise etc and what else could I do….he just said it was not my fault, I had done all I could.  

I think for me it gives me a sense of doing something to extend my life even if that is extending the time between a reoccurrence.  This could be complete nonsense but for me it works.  For other people they take a different mindset.  There’s no right or wrong approach it’s just the one that works best for each of us as individuals.  

I am also quite determined to have a holiday this year!  I got married in 2020 and due to the pandemic our honeymoon to NYC and then Canada was cancelled.  In 2021 we had a holiday booked for the September as part of our wedding anniversary.  It was just a little 5 days away in this country but we were really looking forward to it.  Instead, I got rediagnosed and we found ourselves on the merry go round of cancer and all the scans biopsies and appointments meant we decided to try to get them done and chemo started as quickly as possible so cancelled our holiday.  This year, we have promised ourselves a holiday.  My husband needs it as much as I do.  

louby_lou69
Member

Re: October 2021 Chemo Starters

@nicola2610  Thanks for explaining all of that, it's very helpful. I aren't phased about this really as it will mean the end of my active treatment apart from my Herceptin injections.

Ive even started thinking about re-joining the gym and get some advice from the staff there about a simple workout I can begin with to start getting my fitness back. I've been walking lots but reading about exercise stopping reaccurance is very good motivator.

@Pjsrlife that's good that there's accommodation for you. My mum used this when my dad was in hospital in Birmingham, we live in Staffordshire so driving up and down the motorway was very scary for her in her mid 70's so this was offered to her. It's a brilliant service, we really are very lucky arent we.  

nicola2610
Member

Re: October 2021 Chemo Starters

@Pjsrlife  That’s good that they have free accommodation for you.  I had radiotherapy eight years ago on my first diagnosis.  It was after surgery and chemo, so same as you are now.  Honestly, please don’t worry.  Radiotherapy is so much easier than all the things you have been through so far to deal with your cancer.  They will check you skin condition daily on each session.  The actual radiotherapy itself, they put you on the treatment bed, and your arms are strapped above your head, and they line you up on the machine.  They treat you very respectfully as obviously the top half of the gown is down and you feel exposed but they work quickly and professionally.  They step out of the room, but can see you and speak to you through an intercom.  Then the machine whirls up - first time that happened was when I got a bit anxious but honestly it is a matter of minutes and it’s over with for that day and one session ticked off your list.  Didn’t feel unwell at all.  Felt tired towards the end of the 15 fractions and 4 booster fractions to my collarbone that I had back then, but honestly it’s so much easier than chemo.

 

Hopefully you will be able to be with your family at the weekends during your radiotherapy treatment.

 

nicola x

Pjsrlife
Member

Re: October 2021 Chemo Starters

@louby_lou69

Thankfully my health board offers accommodation. Ive already stayed in it when I had my surgery. Its basic but clean. Theres no charge to stay and they give meal vouchers, we're lucky to have this option. Not ideal I have to be away from the kids, but it will pass in no time im sure!

I hope all goes well with your oncologist today. Its great talking about and moving onto the next step in our journeys but also for me very anxiety provoking. I think its because its the unknown again and losing that security of your chemo team.

Hope everyone has good days

PJ 💕

louby_lou69
Member

Re: October 2021 Chemo Starters

@Pjsrlife 

That's a lot of time driving backwards and forwards. They reckon it takes you longer to get undressed than it does for each radiotherapy session. We shall have to see how true that is.

Ive just had my 7th paclitaxel and have 2 more to go. The end of chemo is so close. I'm meeting with my oncologist tomorrow afternoon face to face! to discuss radiotherapy and ongoing Herceptin injections once chemo finishes and what hormone suppressing tablets I'll be taking. The plan is to have just five sessions of radiotherapy so I hope that's still the case. 

I hope everyone is ok

Lou x