April 2019 Chemo Starters 💖

[Bramley]

Hi Debi

Glad the seroma has finally subsided and hopefully your BC nurse can put your mind at rest about the small hard bit.  I think we will always worry about any lump, bump etc in the future after a cancer diagnosis.  Sounds like you are doing some nice things too with aromatherapy and the look good feel better course. I was amazed how many lovely things they give you on that to take away.  Let us know when you have your dates to start radiotherapy and how many sessions you need. 

I'm doing good although feeling frustrated waiting for radiotherapy.  I actually start tomorrow and I can't wait to get going.  It will be nearly 16 weeks post chemo for me to start radiotherapy which feels like a lifetime.  I'll have 3 weeks of radiotherapy so will finish on 8th November.  I've booked a holiday to the Canaries for mid November which I'm really looking forward to.  It's been a long journey through treatment so it will be nice to finally get away to the sunshine.  My hair is still hopeless and I'm still wearing a wig in public.  It's definitely growing but oh so painfully slow and so grey!  I can't believe I was a brunette before diagnosis! 

Hope everyone else is doing ok?  xx

[Debi2]

Hi Everyone

Haven't heard from anyone in a while, i hope you are all doing well.  I just thought i would update you all on my progress.  I have now got an appointment to see the radiotherapy consultant (Thurs 24th), my seroma under my armpit has finally subsided although there is still a small hard bit still there so i think i will see my breast care nurse so she can just check its nothing sinister. 

I went to see a nutritionist at Haven and she gave me some really good doable changes for my diet.  I have been to one of the Look good feel better sessions which was really good with all sorts of goodies to take home.  This week i have an aromatherapy appointment at the Haven centre so i am looking forward to that too.

Love to all of you

Debi

[Debi2]

Hi NikNak5

I felt exactly the same when i came out of my meeting after surgery results, i too had clear margins and was told that all the cancer had been removed, but i still felt flat, worried and anxious that they had missed something.  I cried when i got home but it wasn't tears of joy, it was more tears for the unknown.  i am currently waiting for an appointment to see radiotherapist, i am 5 weeks post surgery.

Debi xx

[Bramley]

Nik Nak - I can completely understand why you are feeling so flat and confused.  When you are told there are clear margins you hope that the surgeon has removed all the cancer.  A mastectomy sounds very drastic after a lumpectomy with clear margins and a happy surgeon?  I completely understand there are no guarantees with breast cancer treatment but why would they recomend a lumpectomy and then afterwards give you the choice to have a mastectomy just for total peace of mind.  Can't quite get my head around it really.   If you apply this theory, all of us having or had lumpectomy's are in the same position.  If it makes any difference I would also make the same decision as you and go for radiotherapy to kill off any rogue cells that have somehow survived chemo and surgery.  Sending you a big hug xx

Lynsey - hope you are feeling less nauseous and your appetite has returned after the Zolodex? I've not had my first one yet as I needed a tooth extraction.  Due to start at the end of October. 

Hope everyone else is doing well xx

[NikNak5]

Hi Ladies

i got my results yesterday following surgery 2.5 weeks ago. I cam out quite flat & it wasn’t how I imagined it to be. The surgeon is happy with the op & outcome good, clear margin etc. but then said a cell could of jumped the margin so to speak so radiotherapy or for total piece of mind you could opt for a mastectomy but if we do a mastectomy we will probably find nothing - it’s personal choice. Now I’m scared that I still have cancer in my breast but I’ve opted for the radiotherapy. I imagined I’d come out of that meeting tripping the light fantastic but I came out & just felt numb & cried. Anyone else feel the same?? 

[LynsH]

Hi everyone! 

Hope you’re all doing well? 

Ive got a question regarding zoladex...has anyone else who is on it had a loss of appetite? Or nausea? 

I got my first subcut injection 2.5 weeks ago and for the past week have been feeling squeamish and not hungry. Food doesn’t taste great. 

Just wondering if anyone else has had similar? 

Thanks! Lynsey x

[mini mad]

Hi Susie B and all TN ladies,

im sorry that you seem to be getting a negative response re Zoledronic Acid.

i was told that i would be having this every 6 months for the next 2 years at my first appt with my chemo dr.   This is also my second TN in 2 years so dont know if this is why im having it and also im 69....

re gene testing i had this done automatically.  Again might be age related plus the 2 doses of tnbc , but i do have bc on both sides of my family and a 39 year old daughter.

Was relieved when the result showed no BRCA genes....

do let me know the outcome .  Keep pushing.... tc  mini mad xx 💖💖

ps ive finished my chemo now 👍🥳🥳🥳

[Susie B]

Thank you for your reply Bramley. I'll have a look at the information.

Susie B xx 

[Bramley]

Hi Susie, just to reply to your question on gene testing, I think each NHS trust has their own criteria for approving gene testing for breast cancer.  It's worth asking what the criteria is at your hospital.  I didn't qualify on the NHS criteria but as my Mum also had breast cancer I decided to pay for the gene testing privately.  I used a US company (much cheaper than getting it tested in the UK) and I was really happy with the service I received.  I put a post under the genes and breast cancer thread with more information just in case this is something you want to pursue for your own peace of mind (you will need to scroll down a bit to get to the original post):

https://forum.breastcancernow.org/t5/Genes-and-breast-cancer/Private-gene-testing-for-BRCA1-and-BRCA...

[Susie B]

Hi TN ladies

Regarding the Zoledronic acid I asked my onc about when I started my 2nd lot of chemo after surgery. Can't remember if I mentioned here I was on a trial, chemo FEC, surgery, chemo TC, rads. At the time he just said we'll talk about that later. When I asked again prior to my 4th and final chemo about Zoledronic acid he said it wouldn't be suitable for me as I was not receiving meds for hormonal bc. At least I think that's what he meant. English is not his first language but he understands it well. My trials nurse who attends all my onc also agreed with him. I didn't challenge this at the time having already decided I would contact my bc nurse, not the trials nurse, to double check. Anyway I rang her and she passed my concerns on to the appropriate person who the rang me back. When I told her my concerns and explained that I was TNBC, she said "We don't normally give Zoledronic acid in TN cases but I'll have a word with an oncologist and get back to you." Not exactly what I was expecting to be told. Anyway I told her what I had read on both this site and the Cancer Research UK website. Upshot is I have an appointment with the female onco that I have seen a couple of times and trust on 27th Nov after rads have finished. I have been told to see my dentist before then.i am now keeping my fingers firmly crossed🤞🤞.

As for genetic testing I've not had that as there is no bc within the close or wider family. Purely out of curiosity I wouldn't mind being tested but wouldn't know how to go about it. 

Like you I had  a lumpectomy and full ANC. 9 out of 14 nodes were positive which came as a huge shock for me. 

I intend to go armed and ready when I see the onc with all the information on hand incase I am told it's hospital policy not to give the Zoledronic acid to us TN ladies. You may wish to do the same.

As you know there is not much out there for us TN ladies, but research and trials are taking place. It just seems a shame some of us have to fight to get what is available.

My biggest fear now is recurrence but when I read about people like yourself who have had a return visit of this terrible thing and getting treatment and getting through it again it gives me hope for the future.

Please let me know how you get on with your next onc appointment. I hope you get some good news regarding the radiotherapy, there's no harm in asking for a second opinion. Leave a ❤ then I'll look for your reply.

All the Best, Susie B xx 

[Jencat]

Hi Louise,

I'm from the Oct'17 group and also TN. My onc told me about Zoldronic Acid and said that it helps to strengthen the bones and helps to prevent a spread there. I had Z A with every other chemo and for 3 years afterwards. I'm sure it could be beneficial to you, so definitely worth asking about. I'm also 60 (I was nearly 58 when I was diagnosed) It's a bit worrying that not all the onc's seem to be suggesting Z A, especially when we're TN and there isn't anything else that we can take after treatment finishes.

I was offered the Braca gene test, but I think I only just qualified for it as I was told it's only offered on the NHS if you're under 60, I don't know if that's correct. Good to hear that your GP is trying to get it for you x

[louisefpage]

Hi Mini Mad

Thanks for your reply.  I had Docetaxel and Charboplatin for my TN

Louise

[louisefpage]

Hi Bramley

Thanks for your reply.  I'm definitely going to follow this through with my onc.  I hope you have a great holiday,  sounds like you definitely deserve it.

Louise

[Bramley]

Evening!

Louise - I would ask again about the Zolodronic Acid infusions.  It sounds like you tick all the boxes.  Nobody in my medical team mentioned it to me but I asked my BC nurse, consultant and Oncologist about it and each of them told me that I qualified.  I'm 51 and at the point of diagnosis for BC, I hadn't had a period for around 12 months.  I was still having plenty of hot flushes though!  I was described as peri menopausal and the chemo has probably pushed me further through the menopause.  I'm now on Anastrozole for at least 10 years as I'm now considered post menopausal.

I was due to have my first Zoldronic infusion on Weds but my week hasn't exactly gone according to plan....   I have a dental crown and unbelievably it started playing up last week.  Dentist confirmed I had an infection behind the crown and put me on antibiotics.  She tried to do a root canal on Monday to save the tooth but was unable to access the roots so just did a temporary fix.  Her advice was to remove the tooth as it couldn't be saved.  I saw my Oncologist on Weds to discuss Zoldronic Acid but he won't let me start until the tooth is out and healed.  So today I had a tooth extraction and left with a big hole in my gum.  Hopefully it will heal well and I can get started on the Zolodronic Acid soon.  I'm seeing Oncologist again in a month to review the situation.  I will have infusions every 6 months via a cannular in my hand for 3 years (originally I was told 2 years).   To add to my frustration this week, I had my radiotherapy planning appointment which went fine but then told there is a 3 week delay in getting started.  I'm not starting until 21 Oct which will be 16 weeks post chemo.  That worries me as I know they usually like to start radiotherapy within 6-12 weeks post chemo.  I've questioned it but have been told it will make no difference to my treatment plan or prognosis.  I've been feeling a bit out of sorts as I feel nothing is straight forward at the moment.  I just really want to complete treatment and get my life back.  So in order to cheer myself up I've booked a holiday for my husband and I to the Canaries in mid November after I finish radiotherapy.  It will give us both something nice to look forward to  

Kelly - good to hear that you are now over half way through your chemo after the problems at the start.   It must feel good to tick each treatment off and see the end in sight. 

NikNak - hope your boob is settling down ok after surgery and all is good with your incision scars when you see your GP tomorrow.

Hope everyone else is doing well.  xx

[mini mad]

Hi Louisefpage,

im from the june chemo 2019 thread but saw your post n wanted to reply to it.

i am 69 and also have had breast cancer twice in 2 years and also TN both times.

i finished my chemo 6 weeks ago and are having the Zoledronic Acid ( already had one )

every 6 months ( next in Jan 2020 ) for the next 2 years,  for now.

was told about this on my first appt with chemo dr.

i have also had the BRCA gene test done as i have bc on both sides of my family and i have a 39 yar old daughter.   Glad to be told i dont have it 👍

re radiotherapy,  i had lumpectomy and 3 lymph nodes removed in march 2017,  all clear margins, followed by 15 radiotherapy sessions.

this time, same breast, left mastectomy and 3 level 1 ax nodes removed.  Margins all clear.

cannot have radiotherapy again as its the same left breast as before and my skin would break down.

Hope you get positive new re you having the ZA after your treatment.  What chemo did you have for your TN ?  I dont feel at all lost just relieved that its hopefully all over and i did ring that bell !!  Good luck.   mini mad xx 💖💖

[louisefpage]

Hi Susie B

I was interested to read your comments re zoledronic acid as this is something I am trying to find out about.

I'm 60 and post menapausal, have breast cancer for the 2nd time and it is TN.  Thetefore I thinl it would be beneficial to me.

However my onc has never offered it or even mentioned it.  I knew nothing about it until I saw a few posts on this site.  

I am disheartened that the onc has never told me about it. If it wasnt for you lovely ladies I would be none the wiser.

It makes me wonder what else may be available that they havent mentioned to me.

My onc  also dismissed the idea of me having braca gene testing - despite my reoccurance of bc and my dad and cousin dying from cancer and my other cousin having battled cancer.  Fortunately my GP is hekping me try and get this testing.  If not I will have it done privately.

I have had a lumpectomy - it had spread to 6 out of the 9 lymph nodes they removed (just like last time).  I have just finished my 6th and last chemo session and now feel a bit lost.  I'm not sure if I will have radiotherapy or not.  Onc says not - as I had it last time, so I cant have it again.  Hiwever I have managed to persuade her to refer me to the radiotherapy consultant to see what he thinks.

Personally I want every possible treatment  so this wretched disease doesnt return again.

I have now contacted my onc about zoledronic acid - will have to wait and see what she says at my next appt (not for another 5 weeks).

[Susie B]

Hi NikNak5

I had a lumpectomy and full ANC in June and didn't have a drain or dressings. I had internal stitches and glue was put over the surery site which dissolved over time. The ANC site had to be drained twice, the first 10 days after surgery, the second after 7 days. As for my boob, that was swollen for around 4 weeks but I think alot of that was due to the surgety. Just remember that like with everything we are all different as to how our bodies react to different treatments. Along with the exercises I also did a little massage on my surgery side. There are several video clips on YouTube. Just search lymphodeama massage and a selection of videos come up. In time your body will learn to cope without the nodes. Are you having radiotherapy next? If so that is when you'll need full movement in order to put your arms above your head and hold that position comfortably for around 15 minutes.  

My journey has been a little longer than yours as I am on a trial. 4 rounds of FEC, surgery, 4 rounds of TC., radiotherapy which is due to start on 21st Oct.

Hope the rest of your treatment goes well. Take care Susie B xx   

[Susie B]

Hi Kelly73

I'm from the February 19 group. I'm 62 and TNBC. I've looked into Zoledronic acid as that seems to be the only extra thing available to us TN ladies. My onc said it wouldn't be suitable for me, but I have since challenged this and am seeing another onc in November after radiotherapy, who hopefully will agree that I should have it. I tick all the boxes. I have checked on the Cancer Research UK website and read the results of the trials that took place regarding the use of bisphosphonates. Their findings were that although they worked well as reducing recurrence in post menopausal women, there was little evidence that they provided extra protection in pre-menopausal women. Ther's loads of inforation on their site so it's worth having a look.

Hope this helps. You may noticed that we are not very chatty in our group now. That's because we now maintain contact on Facebook Messenger. Me and some others still pop into this site so please leave any questions or messages on the Feb group and me or someone else will get back to you.  xx

[NikNak5]

Hi Debi

just wondered how you are getting on with your seroma? I had my drain removed today after 6 days. My boob is really swollen & feels like there is fluid in it. How long does the swelling take to subside - anyone able to advise? I seem to have a good use of my arm & am doing my exercises a few times a day & even managed to hang the washing out today. Simple things & all that. No more restrictions from the bag around my neck shloshing around. 

i hope everyone is getting on ok? I’m seeing my GP Friday who will take my dressings off to check my wounds.

keep your spirits up people, we’ve got this. 

NikNak

[Kelly73]

Hiya Debi

hope you’ve managed to sort of the seroma and it’s not causing you any more problems.

I asked my Oncologists Registra today, about the Zoledronic acid. I was told I won’t need that as I am pre-menopausal. Just wondering if anyone else in my position has been told the same?

Had my 7th session today, out of 12 (weekly), so feeling happy to be past half way 👍

Hope everyone is doing well x

[Oots]

Hi Debi

I had a lot of trouble with seroma after my mastectomy and partial lymph node clearance. Initially I needed to have a lot of fluid drained on two occasions, a small amount at a third appointment but then it almost abruptly stopped. 

Hopefully this will be the case with you too. 

Fingers crossed. 

Oots

[Bramley]

Debi, the seroma sounds really uncomfortable.  Hope they sort it tomorrow for you and it stays away for good this time.  If it's under your arm and you have had a full ANC with your lymph nodes hopefully you won't be delayed with your radiotherapy.   I had a full ANC and my oncologist said that I would only need radiotherapy on my breast and not under my arm.  Maybe you will be the same?

Jencat - yes my oncologist said that the zoldronic acid is proving quite successful at reducing the chance of cancer recurrence in the bones.  Apparently it creates a hostile environment in the bones for cancer.  Hopefully it will both strengthen and protect our bones. x 

[Jencat]

As you say Bramley, a couple of days of possible side effects is worth it if the Zoldronic Acid hopefully helps to protect our bones. My onc also said that in recent studies researchers had found that it also helped to protect against a recurrence. It seems to vary how many infusions people have x 

[Debi2]

Hi Bramley

No date yet for radiotherapy.  I am suffering with a seroma under my arm, i have had it drained twice and have to go tomorrow for it doing again.  It gets really swollen and is uncomfortable.  I hope this doesn't delay my radiotherapy when i see consultant.

Hope you are all doing well.

Debi

[Bramley]

Hi Jencat, thanks for the reassurance ref the zoldronic acid.  I am seeing my Oncologist on Tues for him to tell me about it and then having the infusion on Weds.  I haven't had my blood tested since July but maybe I will have bloods taken on Tues.  I hope I'm like you and don't get side effects but even if I do it sounds like it's worth it to hopefully protect the bones.  I think I'm going to have 4 infusions in total - once every 6 months for the next 2 years.  x

[Jencat]

Hi Bramley, just wanted to reassure you about the Zoldronic Acid. I had it along side every other chemo and have had 4 on their own since. The chemo nurse told me that flu like symptoms can happen for a couple of days afterwards, but I haven't had any SE's. (Apart from once, but that soon after my dad died, so I wasn't feeling great when I had it) It does feel strange and a bit emotional going back to the chemo unit. Have you been told to have a blood test a couple of days beforehand, I always have to have one before I have the infusion x

[Bramley]

Sue, that is very good news that you have finished your active treatment.  I bet you just can't believe that the only appointmnet on your calendar is now for your 6 week check up.  What a journey it's been but so happy that some are starting to come out of the other side.  Like you I was also diagnosed in February and it seems like a life time away now.

Debi - do you have your start date for radiotherapy yet?

NikNak - hope you are doing well after your surgery on Wednesday and your drain is behaving?  I assume you will get your pathology results in a few weeks?  And then on to radiotherapy for you too if all margins are clear.

The hospital called me last Thursday to offer me a cancellation for a CT radiotherapy planning appointment next Tuesday.  I'll be really happy to get started especially as I'm now nearly 13 weeks post chemo.  I'm hoping my radiotherapy sessions will start shortly after the planning appointment.   I've decided I have the slowest growing hair in the world!  I now have a light covering of mostly grey hair but still have a bald strip right accross the back.  Meanwhile eyebrows and eyelashes seem to be growing back well.  Just wish I had more on my head!  I also have my first zoldonic acid infusion next Wednesday.  Not quite sure what to expect with but it will be strange to back in the chemo suite with a canular in my hand again. 

Hope everyone else is doing well xx

[Runningsue42]

Hello ladies

I have this week had my final radiotherapy and therefore finished my treatment.  To say im emotional would be an understatement.  I cried when i rang the bell and i have cried every day since at the fact that there are no more appointments until my 6 week follow up in November.   My diagnosis in February seems a lifetime ago now.  

I want to say thank u to every single lady on this forum.  (Im crying writing this!!).   I wouldnt have got through these last 7 months without your support.  The advice and support i have received from you has been invaluable.  Its so reassuring knowing im not alone and ive shared so much with u all.

I want to say good luck to each and every one of you.  None of us chose to be in this situation but we have all come together and shared our lives with each other.  I would love to meet up with u all - not sure where everyone lives and how it would work logistically? I live in Warrington (cheshire).

I will continue to read all the posts and i will continue to offer advice and support as much as i can.

Take care ladies

Love and best wishes

Sue xxx

[Oots]

Hi NikNak5

I had two drains in after my mastectomy and partial node clearance. I didn’t feel any real pain when they were removed; I would rather call it a sensation. They asked me to breath out as they pulled and I didn’t realised it was gone after one breath. I didn’t look! 

Oots

[Debi2]

Hi NikNak5

I had a drain in and didn't feel a thing when the district nurse took it out, its best not to look.  I have had two lovely seroma's since my op and have had 300ml of fluid drained off at the breast care unit each time, i am now growing another and have an appointment on Monday for this one draining!

Hope everyone is doing good and has NikNak5 says we have come so far and done so well.  We are truly ladies with strength,  the journey has been rough at times but we are all getting there, keep it up - we've got this. xx

Debi

[NikNak5]

Hi Lindy56

so I had my lumpectomy & node clearance on Wednesday & all went well. Considering I’d never had surgery before it was ok & I wasn’t as scared as I thought I’d be. I came home with a drain which I’m now worried about as the district nurse has just been & she said it will hurt to remove it. Anyone else out there  thought it hurt when taken out?

any way that’s another part of the journey out of the way. Time to heal & then radiotherapy. I know it’s only Friday but I’m bored already.

Thanks Lindy56 for replying to me and for giving me the tip off about the bras on amazon x

hope everyone is ok? From April look how far we have come.

NikNak5 😊

[NikNak5]

So pleased for you Debi. It’s been such a long & unpredictable few months its not surprising you don’t know how to feel. Just take each day as it comes. 

NikNak x

[Bramley]

Very good news Debi and so happy for you.  No more surgery and you can now move onto radiotherapy.  I can completely understand how you are feeling.  I think it is so shocking to hear the word cancer at diagnosis and from that point you just don't know what to think or feel.  We have all been through so much since diagnosis both physically and mentally.   After months of treatment you can hardly dare to believe that it has gone.  I just remember feeling numb after the second surgery to hear those words.  I'm sure I was preparing myself for more bad news just in case. I hope once we complete our treatment plans, we can learn to trust our bodies again and move forwards in a positive way.   Keep the faith and keep talking xxx

[Shi]

Hi debi2 great news clear margins and all breast cancer now removed. This rollercoaster you find yourself on gives so many emotional ups and downs and you just need to hang in, cry when you need to, laugh and be silly when you want to, it’s all part of the journey and the healing 😘 Do please use the someone like me and the ask the nurse on here and also speak to your bc nurse at your unit, there are therapies you can have that will help support you with your emotions ❤️❤️Be kind to yourself you are amazing ❤️❤️💕💕✨✨Shi xx

[Debi2]

Hi Everyone

I had my consultant appointment on Friday and he told me that my margins were clear and i had 14 lymph nodes removed with just 3 showing involvement.  He said all my breast cancer was now removed.  That is a relief that i don't need any more surgery but i can't seem to feel elated, i don't know why but i feel apprehensive and scared and very very emotional.  Has anyone else felt like this after their surgery results?

I will have radiotherapy and carry on with Herceptin and Pertuzumab for a year which i knew about so no shocks there.  So why do i feel like this?

Debi

[Bramley]

It sounds like both of you have had great success with cold capping and I'm envious of your fast growing hair Susanmanchester!    I haven't regretted my decision not to cold cap, but now I don't have a lot of hair, I wonder if cold capping would have worked for me.  Can't go backwards though!  I'm just hoping I'm not one of the very few where hair doesn't grow back fully after chemo.  I have read of lots of ladies who end up with thicker hair after chemo than before.  Mine feels like a tennis ball at the moment with lots of fluff.  My eyebrows are growing back well and I've even got some eyelashes now which is definitely progress.  Maybe I'll put something in the recovering from treatment section of this forum to see if there are any other ladies who experienced slow hair growth.

Oots - so lovely to hear that you have completed all of your active treatment and are now on the road to recovery.  I think you are right, it's bound to take a long time to get back to normal, whatever the new normal looks like, after everything we have been through.  It's interesting that we all suffer with different side effects, both whilst on chemo and afterwards.  I feel blessed not to have struggled with fatigue either during or after chemo but I did suffer badly with nausea on FEC and lost every fingernail on my hands with Docetaxel (now thankfully growing back nicely).   I'm with you on the memory lapses, I seem to struggle to think of the right words and even more shocking with names, lol.... 

I saw my Oncologist today hoping to hear that I'd be starting radiotherapy very soon.  Unfortunately I won't have my CT planning session for around 3 weeks.  Think they have a backlog.  I told him I was worried as it's been 11 weeks since I finished chemo.  He just said not to worry as I had responded well to chemo and my surgery was successful.  He said he isn't worried about me and a few weeks delay will make absolutely no difference.  He pointed out that the Anastrozole hormone tablets I'm taking will already be protecting me.  I will have the first of the bisphosonate infusions (zoladex) in the next few weeks which will strengthen the bones and also reduce the chance of recurrence. I left with mixed feelings, obviously reassured by his words but disappointed to hear that I probably won't start radiotherapy for at least a month.   I will have 15 sessions over 3 weeks.  I asked about booster sessions but he said it wouldn't be appropriate or necessary in my case.  

Debi - hope your Oncologist appointment went well today and they got everything out first time.

Enjoy the weekend everyone with this fabulous weather xx

[Susanmanchester]

Eight weeks after chemo . I cold capped kept most of hair - bit thin - but it is literally sprouting out of the top of my head several inches at a time most weird so now much thicker . Eyelashes much thicker than they were eyebrows nearly there . Still bit tired and surgery site still itchy . On Letrozole no v bad side effects mainly mood swings insomnia . Also taking Vit D pomegranate juice turmeric and garlic . Up and down with new normal but getting there 

[Oots]

Hi all

I have not posted in ages. I was preoccupied with treatment and some other, very unhelpful stuff in the wider family. I have finished my radiotherapy at the end of July (15 sessions) and am now on tamoxifen. I had my mastectomy in February and my last of the four doses of TC chemos mid June. 

So, now I am trying to get myself back to normal and it’s harder than I expected. I read all your recent posts and saw questions and observations which show I am not alone.  So I thought I put down a a few of mine. Maybe they help?

Taste: my taste buds have recovered and I can enjoy food again. Sometimes I still have this tingling feeling on the tongue but not nearly as bad and food tatest as it used to. I have gone off some foods such as apples, prunes and TUC biscuits. Mainly due to negative associations. 

Hot flushes: I suffered terribly when I first started on Tamoxifen. I even started to have night sweats which I never had before. But two months later it’s calming down substantially. I only have them occasionally and then they are not as severe. I used to sit there dripping like a leaking tap. But now it’s more moderate. 

Hair: I had great success with the cold cap. I didn’t loose my hair but it did thin a little. So i can’t comment on hair growth up there. But i noticed elsewhere that 3 weeks ago, my hair started to grow again. That would have been two months after the last chemo. Up to that point, nothing substantial to see. My eyelashes are growing back slowly but they are curly and going in all directions. I find that my head hair usually grows 1 cm in 4 weeks (I used to dye my hair and the grey line was the indicator). 

Fatigue: This is my greatest problem right now. Around early afternoon I seem to hit a wall and I collapse. My body is exhausted and I need to lie down. During and just after radiotherapy I had to sleep every afternoon and I was never a snoozer in my entire life. Now (6 weeks after radiotherapy) I don’t sleep so much but I still have to rest. 

Neuropathy: I didn’t have any issues during chemo itself but this developed soon after I had finished. I have numb toes and sometimes fingers. Worse on the RHS of my body. The middle three toes of my feet feel as if there was a rubber band restricting them. And the top of the right toes I feel a pain when I touch them. It’s getting worse when I feel cold and/or stressed. So I bought warm socks and stopped talking to people ho stress me out😉

Muscles: my muscles are in a shocking state. It feels they’ve wasted away. I am now walking most days, for a mile each time and it is hard. Initially i managed to walk 200 meters but I have increased the distance. Some days it’s harder than on others and there is no obvious reason. My oncologist recommended to join a gym and work the upper body as well. 

Memory: I have sometimes trouble remembering words and names. That also gets worse with stress and I seem to have good and bad days with that. I can still do Sudokus as efficiently as before. So computing power is as normal. 

Overall I am not too bad and optimistic I can get better and to a more normal state. But it’s been tough. I have since met and spoken to a number of women who have all come through this and who seem back ‘to normal’ if that’s at all possible. they all said that it took a long time. That helps me feel confident and suggests I need to be more patient. Good luck everyone! We’ve got this!

I would be interested to hear if anyone has issues with fatigue and neuropathy too.

Oots

[Bramley]

What a gorgeous day it is and just sat in the garden with a cuppa

Pollensa - good to hear from you again.  Sorry to hear that you have had a rubbish time through chemo.  Like you say I don't think many of us get through the whole treatment plan without some sort of set back or bump in the road along the way.  Glad you have now finished chemo.  Believe me, it's amazing when your taste buds return.  I remember all too well how awful food tasted throughout chemo but particularly towards the end.  I think it took around 4 weeks post chemo for me to start enjoying food again.  Good news that you know your radiotherapy will start in early October.  I'm seeing the Oncologist tomorrow hopefully to start the ball rolling to get me in the radiotherapy system.  I'm just conscious that it's now been 11 weeks since my last chemo and I still haven't got a date to start yet.  It's because I had 2 x surgeries after chemo.  I'm very keen to get going now though! 

Can I ask everyone about your hair growth?  I'm getting a bit paranoid that mine is so unbelievably slow!  I didn't have a single hair on my head when I had my last chemo on 3rd July.  I'm now 11 weeks post chemo and although I do have some hair it's really not very much at all.  It feels like baby fine fluff and different colours including white, grey and brown.  I was mousy brown before starting chemo.  It's very patchy and no where near enough to even cover my scalp yet.  The longest hairs are probably around 2cm.  I'm happy with my wig but I'm really hoping to have enough hair for a short style by the time I go back to work in December.  Not sure if that is completely unrealistic (6 months post chemo)?  A lady I met through chemo suggested coconut oil as this had worked well for her.  I've been putting it on in the evening and leaving it on overnight for the last couple of weeks but I'm not sure it's made a huge difference.  I'm using a very gentle organic shampoo and conditioner every day and massaging my scalp lots to try and encourage hair growth.  Anyone else experiencing slow hair growth?  Any top tips? I hope I'm not alone with this issue otherwise I'll be even more paranoid!

[Pollensa]

Hello again,

It's a long time since I posted but I was having such a rotten time I couldn't be bothered! However reading what many of you have and are going through I realise we're all in the same boat and it's not been easy for anyone.

I eventually finished chemo on Tuesday. 6 sessions became 11 sessions. 8 days in hospital. Chemo delayed because nurses couldn't find a vein. Funnily enough, the last session was the quickest and most straightforward!

3 appt next week and radiotherapy beginning of October. It never ends does it?

I always thought I would feel happy with a big sense of relief when I finished chemo but no, still distinctly rough and wobbly. My mind hasn't caught up yet either. And still no working tastebuds!

Anyway, enough of my moans. Hope everyone is improving and starting to feel better. No matter what stage you're at!

Pollensa xx

[Bramley]

Evening All

Littlenoddy - so glad that you have had some good news after the difficulties you faced during chemo. Hope you are now home after your surgery on Friday and heal well.  Just radiotherapy to go now.

NikNak - good luck for your surgery next week.  Hope it all goes well.  They take such good care of you in the hospital and are so lovely I'm sure you will be absolutely fine.  Funny you should mention the pains in your knees and it hurting to stand up as I'm having the same issues.  I'm not sure if it's from the chemo or maybe the Anastrazole hormone tablets I started around 2 weeks ago.  I look a right old crock when I stand up and I'm hobbling around!  Hopefully it will settle down soon.  Well done you on managing to work on some days through chemo.  I've been off work since starting chemo in March.  I'm thinking I will go back for a few hours in the week before Christmas, just so I can put in the forms to get my IT accounts switched back on and catch up with my colleagues in the office.  Also want to go on the Christmas lunch.  I'll be on a phased return for a few weeks in the new year which will be managed by occupational health.  Like you I'm really looking forward to going back now. Another step towards normality after a very difficult year. 

Christine18 - that must be frustrating to have to wait quite a few weeks after chemo for your operation although October will soon be here.  Interesting to hear a few of us are having pains in our joints.  I haven't started on Zolodex yet but will ask Oncologist about it when I see him on Friday.  I hope that it doesn't make the joint pains worse.  Our bodies have been through so much it's difficult to know what symptoms are caused by what drugs.

RunningSue - glad your nausea has finally gone, Yay!.  It must have been a nightmare to have suffered throughout chemo.  Gosh can't believe you are already 9 sessions down on your radiotherapy.  Good news that your skin has been fine.  It sounds like you are enjoying running again.  I only started running when I was diagnosed; think it was adrenalin that got me out the door!  I'm really slow but I enjoy getting out every morning and I feel it sets me up for the day.  Not sure how I will feel as we head into the colder months but I'd like to think I will continue.

Take care ladies xx

[Lindy56]

Hi NikNak5,

I’ve not been on the forum for a while but have been catching up with conversations recently.  Thought I would reply to you.  I have had two surgeries now, the first 15th August was a lumpectomy and the second on 9th September was an ancillary lymph node clearance.  Like you I was very apprehensive before the first operation as I had never been under before either.  It was totally fine.  I didn’t have any effects from the anethestic and didn’t have much pain either. The second one went along the same lines, although I am slightly more sore this time and had to have a drain which was a bit uncomfortable. It had to stay in for the full 5 days but if you do have one it’s reasonably manageable.  Everyone is right when they say the surgery is the easy part.  You will be fine, you can do this. You are stronger than you think.   Kick that rotten alien into touch!  I purchased some zip front bras from amazon, Clouspo and Hopee  packs of two coloured ones for about £9 - £14 for 2. They are brilliant. Comfy and easy to wear and give the right support needed. Have been wearing them since my surgical corset from first op came off.  Make sure you have one to take with you when you go for appointment after surgery. Only regret is that it’s tricky to find light coloured ones, mine are grey, purple/pink and black. Sending you every good wish for the next part of this journey we are on.  Take care x

[NikNak5]

Hi Christine18

Just when you think yay chemo done, you get aches & pains. I’ve spoken to a few people & they have told me it’s a chemo side effect & will ease, but it is agony. It feels like my knees get stiffer the more I walk. I woke up last night as my knees and lower legs ached.

If will be good to get the surgery out of the way. I’ve been told the chemo is the hardest part, I wish you all the best for your surgery on the 3 October. 

NikNak x 

[NikNak5]

Hi Debi

thank you got your response. I’m a little scared about op as not been put under before. I’m having lumpectomy and possible drain. Did you purchase the bras with the zip up the front?? So glad that you are healing well. I will be glad when the surgery is done & I can start radiotherapy, it’s such a long journey.  Do you plan on going back to work soon (not sure if you work or not) I can’t wait to get back to full time work. I’ve managed to work some hours each week through my chemo.

Take care. Are you staying on this group or moving to the radiotherapy section?

NikNak 

[Runningsue42]

Hello ladies

Apologies ive not been on here for a few weeks.  I hope you are all recovering well after surgery and for those on radiotherapy i hope u are doing ok.

I finished chemo on 2nd august.  I felt poorly for a few weeks after my last dose but im finally getting my strength back and the hot flushes are reducing.  I have just started tamoxifen tablets and ive had hot flushes at night recently - anyone else on tamoxifen? The nausea that i had since day 1 of chemo (16 april) has finally eased away!!  Thought that would never go away!!

I started radiotherapy on 3rd september (my birthday!!).  Ive had 9 sessions (6 more to go) and so far so good. Ive been given a cream to use twice a day as the radiation can dry out my skin but its been fine up to now.  However the hospital only have 3 radiotherapy machines and 2 keep breaking so ive been sat waiting up to 2 hours but there are always lots of people to chat to and the nurses come out with tea and biscuits.

For the last 3 weeks ive been walking every day, only 3 or 4 miles, trying to keep active as i was very fit before i started chemo.  Plus i put on weight from the steroids and eating too much cake and biscuits!!  Ive started to put a bit of running into my walks too, im enjoying getting back to my running again.  

Take care ladies, speak soon

Sue xx

[Christine18]

Hi NikNak,

I had my last chemo on the 21st August and I’ve had really bad pains in my thumbs, shoulders, knees and hips. I mentioned it to my oncologist and she thinks it’s temporary and could be to do with the zoladex or it could be just another chemo side effect - joy! My hips have been so bad that I’m waking up during the night with pain. 

Hoping it goes soon! My surgery is the 3rd October, I’m gutted I have to wait so long! 

Christine x

[Debi2]

Hi NikNak

I had joint pain when i was on the Zarzio injections (the ones for your WBC) but they only lasted up to a couple of days after my last one.  Best of luck for the surgery, i had mine almost 2 week ago and its not as bad as i thought.  My arm just feels a little sore under the armpit and some numbness at the back of arm.  

Take care

Debi

[NikNak5]

Hi All

i had my last chemo on 28 August. I’m having my surgery on 25 September. Over the last couple of weeks I’ve developed joint pain in my hands & knees. My knees kill me when I get up from sitting. I’m quite an active person but these symptoms are new to me & I wonder if they are chemo related? Any one else suffered with similar?

many thanks

NikNak

[Littlenoddy]

Hello everyone. I haven't posted for months but I have read all of your posts and have been amazed at how you have all coped. 

I just thought I'd write because after chemo which was awful and stopped early due to neuropathy and liver damage I thought I'd write about something that has gone well

On Friday 13th I had a left breast mastectomy but after a lymphnode biopsy they found that my previously positive nodes had become negative so I did not need the expected ANC which I am grateful for 

The recovery from surgery has been far easier than I expected as I was very nervous about it. But its true that it's much easier than chemo

I will be going home tomorrow or Tuesday feeling like I've made good progress 

Radiotherapy to follow. 

Thank you all for your delightful posts which have kept me going

[Bramley]

Afternoon!

Link to the final Daily Mail article today for those that are interested.  It's all about guilty pleasures   Cheers!  A few healthy recipes too:

Day 5 - https://www.dailymail.co.uk/health/article-7458929/Dr-WILLIAM-LI-explains-certain-ways-cheese-red-me...

Kelly - many thanks for the info on stretches and physio.  I think I'm doing the same stretching exercises as you so I'll just keep at it.  I saw my consultant this morning and she agreed that I should have physio. She could clearly see the cording from my armpit to wrist. I walked along to the physio department in the hospital and completed a self referral form.  I asked how long the wait would be; 10 weeks for non urgent and 4 weeks for urgent.  I explained to the Receptionist that I was due to start radiotherapy in the next couple of weeks and struggling to get my arm into the correct position due to cording. Fingers crossed I will be able to see someone soon or I'll be chasing!  I have an Oncologist appointment next Friday (20th) and really hoping it won't be too long after then until I can start radiotherapy.  I'm desperate to book a holiday somewhere warm for when I complete treatment but obviously can't book anything until I know when I'll finish radiotherapy.

Glorious sunny day and looking good for tomorrow too.  Enjoy the sunshine ladies xx