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April 2019 Chemo Starters πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

It sounds like both of you have had great success with cold capping and I'm envious of your fast growing hair Susanmanchester!  Smiley Happy  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

Member

Re: April 2019 Chemo Starters πŸ’–

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 

Member

Re: April 2019 Chemo Starters πŸ’–

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 outπŸ˜‰

 

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 β€˜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

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

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

 

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!

Member

Re: April 2019 Chemo Starters πŸ’–

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

 

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

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 Β£9 - Β£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

Member

Re: April 2019 Chemo Starters πŸ’–

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 

Member

Re: April 2019 Chemo Starters πŸ’–

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 

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

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

 

Member

Re: April 2019 Chemo Starters πŸ’–

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

Member

Re: April 2019 Chemo Starters πŸ’–

Afternoon!

 

Link to the final Daily Mail article today for those that are interested.  It's all about guilty pleasures Smiley Happy  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

Member

Re: April 2019 Chemo Starters πŸ’–

Most of the exercises have been various stretches, ranging from reaching up a wall whilst standing, and above my head whilst lying down. I would definitely get referred to a physio as only they can β€˜snap’ it. I’m not going to lie, it does hurt but it’s done gradually. Even my surgeon had a go at snapping it, on a follow up appointment after my op. It was after that, that I got referred for physio. She massages the cording but in a way that gradually snaps it or just loosens it a bit. She did say it may never go completely but it does look much better now. When she massages it, it can feel like a Chinese burn (if you ever did that as a kid)

I hope you get it sorted as it won’t go of it’s own accord x

Member

Re: April 2019 Chemo Starters πŸ’–

Thanks Kelly.  I'd be really interesting to hear about exercises recommended by your physio for cording.  I asked about physio but was told that cording normally gets better within a few weeks.  If it continues I was told to self refer for physio on the NHS.  Yours seems to be taking quite a while to get sorted.  Was it painful when the physio snapped the cords?  It certainly sounds it but I'm not sure what is involved? You are right, it looks really strange.  I can literally see the cording down my arm which makes it look quite disfigured when I put my arm above my head.  The veins are really hard and tight in my armpit and inside my elbow at the moment although it looks most disfigured on my lower arm.

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya Bramley

so sorry to hear that chemo didn’t get rid of all the c cells and that you ended up having further surgery. Fingers crossed surgery has got rid of the stragglers and if not, Radiotherapy sure will πŸ‘

I developed cording after my mastectomy, even though I was doing my exercises. I still have physio now to address this(op was in Feb). It’s much better than it was and my physio was able to β€˜snap’ some. It’s still visible but nowhere near as bad. It’s more of a cosmetic thing for me now. I have full movement but don’t like how it looks.  Guess I just want to look like I did before my op.

anyway, good luck with your Radiotherapy and Thankyou for the links regarding daily mail x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi All

 

Link to day 4 of the Daily Mail article in case anyone is interested.  I have never heard of purple sweet potatoes and I've not used oyster sauce before but it may be good to try in a stir fry?  Also sounds like a good excuse to eat dark chocolate every day Smiley Happy

 

Day 4 - https://www.dailymail.co.uk/health/article-7454449/Dr-WILLIAM-LI-picks-items-help-fight-specific-con...

 

Debi - sounds like you are doing brilliantly after surgery to have most of your movement back in your arm Smiley Happy  Keep up with the exercises.  I was really surprised after my first surgery to have nearly full movement in my arm a couple of weeks after surgery.  Just a pain that I have the cording this time after the second surgery.  I keep reaching my arms up to the top of the door frames in our house and holding the stretch for around 30 seconds just to try and release it.

 

Fingers crossed, you may have a complete pathalogical response from the chemo when you get your results next week with your consultant.  I understand that scar tissue left from chemo can also look like cancer?  Hopefully your pathology results will show that chemo completely killed off all the cancer cells.  If not and you need second surgery, you will be absolutely fine.  I had 2 x general anaesthetics just 3 weeks apart and recovered really well from both. Let us know xx

 

I keep asking myself if I could have done anything differently during chemo to get a better response.  I know my diet was really healthy, I exercised every day, slept well and kept a positive mindset throughout.  I just feel gutted to have been through such a brutal treatment plan and it was not the result I was hoping for.  I know it's not helpful to look backwards but sometimes it's really difficult not to on this roller coaster journey.  I think I just need to get going on radiotherapy now so I feel more reassured that any rogue cells left behind are being sorted. 

 

Onwards and upwards as they say xx

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Bramley

 

Reading your post you made the right decision to opt for a second surgery.  I too only had partial response to chemo - although it was a good response it didn't get rid of the lumps (breast and lymph node) completely.  I will certainly be opting for second surgery if suggested.  

My recovery from surgery on 4th Sept as been quite good, i am doing the arm exercises 3x daily which are helping loads and i seem to have most of the full movement back.  My arm is numb from under my arm at the back down to half way towards my elbow which i can put up with.  I had to have my drain taken out on day 4 because it had a blockage in it and started leaking at the wound end, but the district nurses come out every 3 days to check the dressing and any swelling. 

I have booked myself in for the Look Good Feel Better and my aromatherapy and nutrition sessions all in October so thats to look forward to. 

I am going to have a read of the Daily Mail articles, thanks for the info Bramley.

I will update you all when i get my results next week. 

Stay strong we've all got this.

Debi x

Member

Re: April 2019 Chemo Starters πŸ’–

Evening All

 

I've seen the Daily Mail are running a series of articles every day this week written by Harvard Scientist, Dr William Li.  He has spent his career researching how certain foods can help to prevent and manage disease including cancer.  It's been quite interesting to read and I've picked up a few tips.  Not sure how practical some of it is though!   If you are interested here are the links for the first 3 days (hope links work!):

 

Day 1 -

https://www.dailymail.co.uk/health/article-7441993/Harvard-scientist-Dr-WILLIAM-LI-reveals-foods-sav...

 

Day 2 -

https://www.dailymail.co.uk/health/article-7445443/Harvard-scientist-Dr-WILLIAM-LI-shares-ultimate-g...

 

Day 3 -

https://www.dailymail.co.uk/health/article-7450381/Dr-WILLIAM-LI-details-diet-disease-fighting-stem-...

 

Kelly - very good news that you are back on chemo after the issues with your heart.  Hopefully the rest of your weekly Paclitaxel sessions will go without issues and your neutrophils behave well and keep above the minimum required. 

 

Debi - glad you are recovering well from your surgery.  Fingers crossed your results will be positive and you can move onto radiotherapy.

 

I had a bit of a set back with my results after surgery.  The mammogram and ultrasound before surgery suggested that chemo was really successful and the tumour in my breast was no longer visible.  However during surgery a tumour of 1.6cm was removed and found to have active cancer cells i.e. the chemo did not achieve a complete pathalogical response.  The consultant was happy everything was out of my breast as there were good clear margins.  I also had 5 lymph nodes removed during the same operation; I already knew one was positive for cancer from initial biopsy at diagnosis. I was very relieved to hear that the other 4 nodes were clear.  However, there were a few cancer cells in the fatty tissue surrounding the one positive lymph node (on the outside of the one lymph node).   I was given the choice to go onto radiotherapy which would kill any remaining cancer cells under my arm or have further surgery to take more tissue away and also remove the rest of the lymph nodes as a preventative measure.  I opted for surgery and had the second operation for a full ANC clearance 3 weeks after the first surgery.  They took out 20 lymph nodes and found a further 2 with cancer cells so 3 out of 20 were affected (all on the lower level).  I now feel it was definitely the right decision to have second surgery as I would never have known that a further 2 lymph nodes were affected.  I have to say it has been more painful to have all the lymph nodes out rather than just a few in the first surgery.  I have developed cording down my arm from my armpit to my wrist so trying to stretch it out lots every day and massaging the very hard veins.   It's definitely starting to improve but very slowly.   I've been on quite a emotional roller coaster journey over the last 7 weeks since finishing chemo.  I'm gutted that chemo didn't kill all the cancer cells in either the tumour or lymph nodes.  I had full dose chemo for all 6 rounds of FECT without any delays.  I'm not sure how common it is for chemo not to achieve a complete response or whether I have just been unlucky?  I am very relieved and grateful that all the cancer has been removed and hopefully radiotherapy will kill any stray cells.  Just can't wait to start and get through radiotherapy now.  I've already started taking Anastrazole hormone tablets.  Knees are a bit achey but it could be because I've started running again post surgery.  Hopefully they will settle soon.

 

Hope everyone is doing well.  I think most of us have probably moved onto radiotherapy now?  x 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya All

update from me. Well after a few months break from chemo, due to heart probs, I’m now finally back in it. 

I’m on weekly Paclitaxel and have had 4 so far. I have to say that up to now, I’ve not really had any side effects. Few aches, tired n picked up a cold that I can’t seem to shift. Neutrophils are 1.6 so on the low side, but obvs still ok to have chemo.

Lizandsaeah- who runs the β€˜moving forward course’. I may look at this when I’m closer to finishing. Got 8 more chemo then 3 weeks or Radiotherapy left yet....but I’m counting down.

Deb- glad to hear your op went well. Fingers crossed all ok and you can crack on with your Radiotherapy x

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi2 

 

Happy to know your surgery went well. Make sure you get plenty of restπŸ›‹πŸ›ŒπŸΎ and keep going  with the arm excercisesπŸ‹οΈβ€β™€οΈπŸ’ͺ. Fingers crossed🀞 you'll have good news when you go for your results and are soon able to start radiotherapy.   

 

Take care, Susie B ❀❀

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you everyone for the reassurance and wishes.  After all the worrying and being anxious it was all fine.  

 

Well its 3rd day after surgery and i don't feel too bad.  A little sore and tired ( i usually sleep on my left where i have had the surgery!).  i have a drain in which will be taken out on Monday by the district nurse.  My results should be back on 20th Sept when i have an appointment with the consultant πŸ™.  I am doing my arm exercises three times a day and it does feel more moveable after them.  If my results come back ok next step will be radiotherapy.

 

I hope everyone is doing well, is everyone staying on this forum or moving over to the radiotherapy one?

 

Take care 

Debi x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi, 

 

Wishing you a speedy recovery after surgery tomorrow. 

I had node clearance in January and you have to look carefully to find the scar now!

 

3 more rads sessions to go now, then it's time to plan my return to work in November.

Anyone else doing the Moving Forward course? I'm starting one next week so I hope it'll help me to be realistic as I try to return to a more normal life as I know I'll need to pace myself, which I've never been good at! 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Debi2 

 

I had ANC and WLE back in June after chemo. I was absolutely dreading it😰😰😩😩 despite everybody in my Feb 19 group assuring me that surgery was easier than chemo. (I was taking anti-anxiety meds in the 3 weeks prior to surgeryπŸ’ŠπŸ’ŠπŸ’Š). And do you know what? They were rightπŸ€—πŸ€—πŸ˜Š. I spent my time prior to surgery chatting to the girls on here and playing games on my tablet. Admittedly I did have a bit of a wobble when I was taken for my surgery. Then it just got surreal. As in a comic book sequence one second I was having a cannula put in, followed by anti-sickness meds, pain relief, relaxant by one aneathatist whilst the other was putting probes and a blood pressure monitor on me. I have no idea when the aneasethic was administered.  Next picture I'm in the recovery room with a nurse telling me that it was all over, I had a small oxygen mask on, that she would check my BP and other signs. When she was happy I was recovering well she arranged  for me to go back to the ward to continue my recovery. I wasn't in any pain. I was a day patient and didn't have a drain. My surgeon thinks they are unnecessary but they all seem to have their own preferences. My wounds were also stitched and glued so no dressings. After the three Ts, tea🍡, toast🍞 and tiddle🚾 I was discharged along with a 'what to do after surgery' leaflet and a list of arm stretching excercises to start the next day. 

Good luck for tomorrow. You're a strong girlπŸ’ͺπŸ’ͺπŸ’ͺπŸ’ͺand you can and you will get through this.πŸ’•πŸ’•πŸ’•  

 

Susie B xxx

 

 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Good luck Debi. Thinking of you. I’ll be having the same but on 25 September but I will come home the same day. Thinking of you. We’ve done the worst part. X 

Member

Re: April 2019 Chemo Starters πŸ’–

Good luck Debi. 

Member

Re: April 2019 Chemo Starters πŸ’–

Good luck for surgery tomorrow Debi. πŸ’—

 

i had mine 2 weeks ago and it went absolutely to plan thankfully. I’ve had a good recovery and I’m just waiting now to start radiotherapy...the last hurdle! 

I hope you are all doing well. 

 

Ive just signed up to do a charity skydive for Beatson cancer charity with my friend on the 12th october! Just hoping I’m fit enough for it after radio. Raised over Β£835 already so will feel very guilty if I can’t do it! 

 

Xx

Member

Re: April 2019 Chemo Starters πŸ’–

Debi - just wanted to wish you well for your surgery tomorrow.  I'm sure you are feeling apprehensive but it will all be over before you know it.  Hope it all goes well.  xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

I hope everyone is enjoying the warm weather!  I am boiling what with the hot sweats and the weather.  My surgery date is 4th Sept and i am very nervous.  I am having wire guided wide local excision and auxiliary clearance. I will have a drain in for 5 days and stay in hospital overnight. Can't wait for this part to be over.

 

Stay strong lovely ladies πŸ’ͺ

Debi

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

😁post ops, no heavy lifting for at least 6 weeks, so no hoovering or carrying heavy shopping 😁 you will be amazed how quick your bodies knit back together after op, just be gentle with yourselves. My surgeon had me wash in hibiscrub for 4 days before op and then continue to use it after for about a month and I had no problem healing. I slapped aqueous cream on post surgery and got minimal  scarring, ❀️❀️ keep πŸ’ͺπŸ’ͺπŸ’ͺyou are beautiful and amazing πŸ‘­πŸ‘­πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi

 

Congratulations Christine18 on finishing your chemo, the cold cap looks to have worked a treat for you.  i too have finished chemo and this morning am on my way to see surgeon for date. I hope you don't have too many side effects and your surgery goes well.

 

Shi thank you for the advice, i wouldn't have known to go up two sizes either. 

 

Hope everyone else is doing ok and hopefully enjoy the sun when it appears!!

 

Take care 

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Thank you for all that advice! Very very useful. I had planned to go bra shopping after my SE wear off from Chemo. I wouldn’t have thought to go two sizes up so that’s really helpful. 

I love a good excuse for buying new PJs too! 

Thank you,

Christine πŸ’–

Shi Community Champion
Community Champion

Re: April 2019 Chemo Starters πŸ’–

πŸ‘πŸ‘πŸ’ͺπŸ’ͺπŸ‘πŸ‘well done Christine and double well done cold capping πŸ’ͺπŸ’ͺπŸ‘πŸ‘rest up, surgery is a doddle after chemo, get some short sleeve button front pj’s a pair of sliders and a dressing gown for hospital, take some hand cream and lip balm too, it gets dry after the op. Post op bra a M&S zip front sports bra is good as has racer back so plenty of room, go 2 sizes up I.e. if 34 get a 38 you could be a bit swollen after. Get some sticky dots that you can put on the door for post op exercises you can see your progress daily as you reach that little bit higher and further πŸ‘πŸ‘hope that helps and jump on a surgery thread and rads thread too πŸ‘ rads get a vest top, keep slapping cream on, dr organics aloe Vera and tea tree gel from Holland and Barrett good, moo goo, Aveno and e45 are used a lot. Keep πŸ˜πŸ˜πŸ’•πŸ’•βœ¨βœ¨Shi xx

Member

Re: April 2019 Chemo Starters πŸ’–

You look great !  

Good luck with the rest of it x 

Member

Re: April 2019 Chemo Starters πŸ’–

Well done on finishing, the time will pass quicker than you think. 

 

I'm already halfway through rads, don't know where the days go! 

Member

Re: April 2019 Chemo Starters πŸ’–

Hey lovely ladies,

 

I had my last Chemo yesterday. Decided to dress up and make a day of it! Was very emotional at the end! But also a little anxious as I now don’t have surgery until the 3rd October so I just hope that the chemo has done it’s job and the cancer doesn’t start growing and already in the mean time! 

Then I’ll be starting Rads in December. Such a long way to go still. 

 

Im just chilling in the garden today eating frozen grapes to help ease the nausea. Very tired today but can’t sleep because of the steroids. Can’t wait to chuck that last bottle of steroids in the bin!! 

 

Hope everyone else is doing ok. 

Christine x7B7B18C9-6576-4248-8D47-66DD71D6A065.jpeg

 

C25199DE-CD7B-4E4D-A744-43D7308E1BFB.jpeg

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Evening ladies, 

 

I've not been getting the alerts for posts so am now in catch up. 

 

Hope everyone is recovering well from chemo, I've got way more energy and being able to taste again means I've been eating everything in sight! Got most of my feeling back in my fingers which is good. 

 

Had session 7 of 20 rads today, does anyone else have breast swelling? 

Its like going back to post surgery! They've done another planning scan today due to the level of swelling, as it's increased each day since no 4. They were concerned about a possible infection but there's no evidence of that fortunately. 

 

Started Anastrazole today as well. Oncologist will see me again in October then I'll be put on an open access system where I have to go through the breast care nurses to be seen. 

 

Looking forward to my short break in late September, consultant suggested it would do me good before I go back to work. Just waiting to see occupational health to work out how my return will be managed. 

 

Heard someone ring the bell today, we didn't have this in my chemo unit, I got very tearful as I don't feel it's the end of anything, when looking at ten years of pills and three of injections and infusions. Couldn't even wipe my eyes as I was all lined up 😭 on the rads table. 

 

Trying lots of new things at Maggies during rads, liked tai chi and the choir, but I've confirmed I'm not artistic at all in the art classes!!! 

 

 

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Runningsue 

most of the time is spent lining me up

like a slab of meat ! There is nothing to it really but I live 20 miles from the hospital so a two-hour round trip is pretty tiring . Like everyone else will be so glad when it is all over already taking Letrozole and Vitamin D . No SEs as yet best to all x 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi ladies

Susanmanchester - how are u finding radiotherapy so far? I had my planning appointment this morning.  All seemed to go ok and im booked in to start next tuesday.

I enjoyed my holiday last week, didnt have a great week for weather but i got chance to rest.  I felt grotty most of the time and kept checking my temperature as my neutrophils were low but my temp stayed within the guidelines.

Hope everyone else is doing well?

Take care

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

had 2nd radiotherapy today 13 to go don't know about anybody else but pretty much at end of tether and exhausted . Will be v pleased to hand back wig tomorrow as never got to use it ... roll on Sept 5 

Member

Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Its been a bit quiet on the April thread the last week, hopefully you are all side effect free and doing lots of things.  I have been not too bad since my last chemo i just had some throbbing in my hips and lower back last night but took some paracetamol which helped me get to sleep.  Hot flushes have also been quite regular this cycle too, but other than the other usual SE doing ok.

 

Christine - hope you are doing well after your last chemo, do you have surgery to go?  I am looking into more healthy eating and trying to get out for a walk every day, even if its only very short.

 

RunningSue - i hope you enjoy the sea air, we are going to the coast at the weekend all being well as i seem to be craving fresh sea air too.

 

All the other ladies on the April thread - take care and say strong.  

Debi

Highlighted
Member

Re: April 2019 Chemo Starters πŸ’–

Debi - Congratulations on your last chemo session and glad you were able to ring the bell!  You may be high on the steroids but at least you know this will be the last lot of chemo side effects which is a good feeling.  Also really good news that your tumour has shrunk so much and hopefully this last round of chemo will make it even smaller.  Do you have a date for your surgery?  

 

Christine - glad to hear that you are also coming to the end of your chemo.  Thanks for sharing the link on the on-line course about exercise and disease.  I truly believe that small lifestyle changes, exercise and nutrition can make a  difference to our physical and mental wellbeing post cancer treatment.  I'm looking forward to getting back to the gym when I have some hair!  In the meantime I'll continue to walk/run every day as it makes me feel so much better in myself. 

 

Mandy - hope your chest infection is getting better and good luck for your sugery on 3rd September.  Like you say each stage of treatment is a worry as you don't know what to expect but hopefully it will all go smoothly and it will be another step closer to finishing treatment. 

 

RunningSue - hope you are feeling a bit better now after your final chemo.  I'm sure the sea air will help with your recovery.  I loved being by the sea for a week after my surgery.  It was just the tonic I needed.  Good that you have your radiotherapy planning meeting next week and hopefully can start soon after. 

 

Hope everyone else doing ok. xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hi all

 

Well i had my last chemo today and i am at the moment on a high - although that might just be the steroids!!  I did ring the bell even though i will be going back every 3 weeks to have my Herceptin and Pertuzumab. My MRI had shown another shrinkage some i am down to 5mm now from the 2.8cm at the start of treatment, hopefully it will shrink a bit more with this last dose.

Hope everyone is ok and moving on to next stage of treatment.  

Catch up soon

Debi

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Mandy and Nicola,

 

I also have TNBC. The rate of reoccurrence has only just started to worry me as I come to the end of chemo. As much as I will be so so glad to get Chemo over and done with as it has been a hell of a slog, I’m worried that it is nearing the end of treatment altogether. I have surgery to come and radiotherapy after so will be likely finished at the end of November/beginning of December. I think when the end is here I’ll be so relieved yet that’s when I will really start panicking about it coming back. 

I just keep telling myself that it’s not 100% reoccurrence so I’m hoping we are all in good hands and fighting this. I’m doing a course at the moment about exercise and disease (it’s free on a website called www.futurelearn.com so might be worth looking at) but basically it goes into depth about the relationship between exercise and fighting diseases like cancer. So my main aim after treatment finishes is to focus on getting really fit!! That will focus my mind and keep my body healthy. The course is free to join and there are no tests or anything like that. You can pay to do the final exam at the end and get a certificate, which I might do as it could help me at work, but otherwise it’s just a really good information tool. 

Hope everyone is having a good weekend and not getting too blown away! 

Christine x

Member

Re: April 2019 Chemo Starters πŸ’–

Hi Nicola,

 

i havent posted on here for a long long time as I’m also a member of a Triple Negative group and I find it hard to keep up with everything. I checked back in today and found your post asking if anyone else has TNBC, I have and like you I am also concerned about recurrence. I finished chemo 2 weeks ago tomorrow although I still feel rubbish as I have a chest infection. I have a mastectomy, full node clearance and DIEP reconstruction booked for 03rd September which I’m so worried about. I keep telling myself I worried about chemo too and now that’s over so hopefully it will be the same with surgery. Then it will be rads and like you I am hoping it will all be over by Christmas. 

 

It it sounds like you are doing really well and getting through everything,  chemo will soon be done for you and although you are worried about surgery I’m sure it will be a fantastic feeling to know that the tumour has finally gone.

Good luck with the rest of your treatment.

 

Mandy xx

 

Member

Re: April 2019 Chemo Starters πŸ’–

Hello ladies

Congrats to everyone who has had their last chemo this week and good luck to everyone awaiting surgery and results.

Im 7 days post my final chemo and unfortunately ive felt rough all week.  Ive had hot flushes, stomach cramps and the nausea seems to have got worse not better.  I felt so rough i asked for my bloods to be checked in case of infection.  The bloods came back clear but my neutrophils are low so i need to check my temperature to make sure it doesnt drop or go too high. 

 

Today ive come on holiday with the kids in a caravan for a week in yorkshire.  We had it booked since last year and we have all been looking forward to it but i feel so lousy.  We are right by the sea and im hoping the sea air and rest will perk me up.  

 

I have my radiotherapy planning appointment for 19 august so i should start the week after.  Has anyone started theirs yet?

Hope u are all keeping well?

Take care

Sue xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Afternoon all and what a windy rainy day it is!  Managed to do my usual walk this morning first thing but glad I had a raincoat and hood over my wig!  May have lost it otherwise, lol...  I'm not allowed to run post surgery so walking quickly in this weather!

 

Kelly - good news that you are finally back on the chemo band wagon after months of uncertainty.  Can you believe that we see that as a positive to be back on chemo, side effects and all.  What a strange journey we are on.  Lets hope it is a smoother ride for you now and you can complete your chemo treatments.  Good luck for the start of your weekly Paclitaxel in a couple of weeks.  So sorry to hear about your brother which must be just devestating for you all Smiley Sad   I'm sure you will do everything possible to fulfill his wish to get through your treatment plan and be well on the other side.  In the meantime be kind to yourself and take the time to grieve in your own way. xxx 

 

LynsH - great news that you have now finished your chemo.  Fingers crossed for your MRI and a straight forward guide wire lumpectomy and home by the evening.   Hopefully you will find the surgery easier than the chemo part of treatment.  At least you have some energy back with the children being off on school holidays.  

 

I'm like a cat on a hot tin roof and I can't sit still.  I will get my results next week and I can't think of anything else at the moment.  Just don't know what to do with myself but have to keep busy.  I'm currently working through loads of cupboards in my house clearing them out.  I'm sure it won't last after next week.....

 

Have a good weekend everyone and keep well xxx

Member

Re: April 2019 Chemo Starters πŸ’–

Hiya All

firstly Congratulations to all whom have finished their chemo and good luck to those due surgery.

Well I saw my Oncologist on Monday and following months of uncertainty, I am finally getting back on Chemo. Due to start the week after next and will be having 12 weekly sessions of Paclitaxel. 

Got my heart mri at last today, so hopefully that won’t change anything.

I previously mentioned that my brother was diagnosed with lung cancer, well sadly he lost his fight last week. I am completely broken but one thing he wanted more than anything, was for me to get better, so I will try to be strong and get through the next few months for him. It’s gonna be tough emotionally but I’ll give it my best shot x