Oh crikey dikat! Everything crossed that your soon home in bed and it's a blip, but better be safe than sorry.....xxxx
Currently sat in a side room in A&e. Started feeling a bit shivery yesterday and temp was hovering around 37.6 reached 37.8 an hour or so ago, thought I better come. That’s what it was last time I was admitted with neutropenic sepsis. Had diarrhoea today too! Bloods been done so guess it’s just a waiting game now! Just want to go to sleep 😴
Yes, I second that. Thank you for all of your help. It’s made getting through this horrible journey that little bit easier. I especially loved the 80’s jukebox !
Hi Mary Kamille
Moving Forward is run by this charity and the NHS. They are countrywide and help you when you have completed treatment and have primary breast cancer. My oncologist recommended it. I'm booked in for September. Worth having a look at especially as hospital appointments will lessen off as we finish chemo and Rads.
So pleased for you Jayne. That's all such good news and has given you a wonderful boost! Long may it continue. Hope you are treating yourself to something nice today. TLC of yourself is so important and families don't always realise that and can be even more demanding as individuals. Especially for young mums like yourself.
Not so hard for me as am in late 60s and most of family is other side of the country. (Bliss - often!)
Nevertheless, husband's nephew is pressing to come to stay for a few days at the end of his walking holiday and I could really do without that!
Keep smiling! XX
Hope you are doing OK. I haven't booked for anything and don't know what 'Moving Forward' is all about. I still have Radiotherapy to come. Have had surgery and just had my last (6th) Chemo. XX
Another appreciative lady wants to add her thanks, Shi. You've been there for all of us with encouragement and lots of emoticons (can't seem to do them myself on here) when you made us all smile. Makes all the difference.
As to others who are nearing their last cycle but have had delays - all looking good on my 6th at the moment, and am hopeful the taste bother will only continue to improve.
Unfortunately, DiKat no bell on my oncology chemo unit either. What a lovely idea that was!
Will keep posting and reading and connected even if we do enter other threads as well. Hugs for everyone! XXXX
Glad you are going to keep chemo thread as vase thread, you’ll all meet lots of other ladies on ops and rads threads, those having ops might not yet have gone through chemo, so you will be able to let them know if after op they find themselves needing chemo you can point them in direction of chemo thread and pass on your tips and tricks 👭👭❤️❤️That’s the beauty of the bccf, we all ❤️❤️Each other and take care of each other 👭👭 dikat what can I say, the chemo sent me 🤪🤪💃🏻💃🏻🕺🕺so glad I’ve made you 😁sometimes through the chemo. The oct17 thread I’m from we’re brilliant we had each other 😂🤣😂🤣😂most days 💕💕✨✨Shi xx
Very pleased that you have seen someone who has explained it all to you! I think that the drs get so used to patients looking on the internet, they make assumptions that we have the information. Unfortunately we still need it explained to us! Brave of you to go for a double mastectomy. I do wonder if I should have done the same though there is no indication of the likelihood of cancer. It’s just I’m very unhappy with my body image now.
We shall ring ring the bell together on the 23rd April xx
Drummerswidow, I too have my final Chemo on Tuesday 23rd April. We can be the last together.
I spoke to the oncologist on Thursday and saw a different one to previously and he was so helpful and good at explaining things. Why oh why have I not seen this man before. I'm not having any scans now as I want a double mastectomy and they will measure the shrinkage etc when the op is done. The chemo and radiotherapy is for long term health, not to treat what we have (apparently) as they will be cutting that out so no real need to kill it. I did not know this - why did I now know this ???
Also - interesting fact, lumps do not always get smaller, but the cancer can still be killed, so its just an indicator that things are working but if the lumps do not reduce much in size, this does not mean that Chemo isnt doing its thing.
Honestly he was amazing - I came out with a whole bag of goodies from the pharmacy for the side effects that I could have done with 4 months ago.
I feel so much more positive since that appointment, like maybe there is a future after all.
Surgeon appt on Monday so see what that brings
Good idea about keeping the thread going Shi. I for one will definitely need the continued support of all these wonderful ladies. Thank you so much for all of your advice, support and many words of wisdom too. Not forgetting the smiles you have brought to my face at times 💕💕💕
💃🏻💃🏻🕺🕺💃🏻💃🏻😁😁😁😁🛎🛎🛎🛎🛎well done everyone and those on the way to ringing the bell 💪💪💪the martinis are on those already sipping them now ❤️❤️❤️Us Oct 17 bounced off to rads and ops but always kept our chemo thread as our ‘home thread’ and kept in daily touch there, so we all came home together if that makes sense, we 👭👭👭all the way😘😘which you have all done too 😘😘💕💕✨✨Shi xx
Well done on your last chemo maryKamille. Hope you treat yourself to a glass of red. Pleased that you got some good info from the dietitian.
I managed to get that 2/3 days where tastebuds improved too so was nice to have a little respite! Take care and stay in touch xx
Very jealous you are all finishing your chemo. Unfortunately because of a set back my last chemo will be Tuesday after Easter Weekend. I should have finished a couple of weeks ago. Well done all of you for finishing this part of the horrible journey! I hope the last lot of side effects are not too bad.
I too have had something picked up on my CT lung scan but they think it may be scar tissue from mastectomy. Will have to chase up next week.
I’ve got 2 more chemos to go. Can’t wait, especially to get my PICC line removed. Someone said to me today, ‘I bet you can’t get back to normal’. Unfortunately I can’t see that life will ever be ‘normal’ again! Got Radiotherapy in May to look forward to. AND then the scary bit when the safety net of hospital appointments is removed!
I had a very bad bout of bronchitis round about 2011. It was just after hubby had given up smoking and I reckon it was the passive smoker in me that bought about the bronchitis as never had it before and I read somewhere that when people give up smoking (or passive smoking in my case) the lungs then expel all the crap from the years of smoking/passive smoking. I did have antibiotics though. But I put the nodule down to that.
Only other thing I can think of is that I had radio therapy when diagnosed with BC first time round, back in 2009. Maybe that caused a nodule.
But I do know they are very common and most are not troublesome and they only keeping an eye on it just incase. xx
On subject of lung nodule I had scans for that, too. I had a 3m one at start of Chemo treatments which Oncologist reckoned was scar tissue but wanted to be sure. This story may help you.
I had a bad infection in 2016 (Christmas time) and they (GPs) would not give me antibiotics for it - because everyone cutting down on those. Shame, because I was coughing blood so badly after no medication six weeks' later, except a useless inhaler (never had one of those before either), that the nurse who was doing a breathing test on me at the practice simply refused to do it. She said I wasn't well enough and booked me straight in to see the doctor. He sent me for Chest XRAY and gave me antiobiotics. All clear within a week and relief (i.e. no coughing/blood) within 3 days of medication.
That's a long story but may help if you have had any kind of lung infection in the past which your nodule probably relates to, too - scar tissue.
Anyway, up-to-date scans this year and end of last showed no change in the nodule and Oncologist has had his theory confirmed. Just being careful, I guess, and we can't quarrel with that. Try not to worry. XX
Hi absolutelyannie and all you lovely ladies
I have finished the round and it has been like being in a Boxing Ring at times for me and for others who have had more SEs and seemed closer to a temporary knockout, too! We've done it and at what point did we really, really ever think we would get here? Just proves what we all know now - there are so many inner resources we brave ladies have to draw on. Everyone gets lots of hugs and pats on the back - but not too hard!
I have a week's holiday booked before the end of the month and then it's straight into Radiotherapy - 15 sessions over 3 weeks. But I get weekends off. No idea what it will do to me and not thinking about it right now either. Wait and see.
Good luck to everyone whatever their stage and will keep reading and posting, promise! XX
Many thanks for your good wishes. All went well, as Staff Nurse managed to cannulate me for the last one (so glad I never had a PICC line) and I had a 2 or 3 days respite just before the day of the 6th Chemo, when taste/texture beginning to improve.
Oncology Nurse who took over said my last pre-Chemo b/ts were noticeably much down - immune system - and she wondered if I had had an infection. That could have made things worse. I did have several days during the two previous Chemos when I felt like I had the flu, shivery and cold, but without a temperature or fever to prove it!
I lost 2 kilos in 3 weeks on the 5th one - acutally about 2 weeks, because first week is Steroid buzz and appetite appears in short bursts to help things along.
Anyway, the last pre-Chemo b/t was much better and we went ahead with the 6th Chemo on Thursday with me feeling more positive.
I had the dietician phone me today (Friday) and she has been most helpful and is sending me stuff. The Registrar thinks problems will continue now through to the end of Radiotherapy and maybe beyond. But she is a most unpleasant woman and my Consultant is now off on holiday, so he can't add his 'pennyworth' to any discussion.
At least the dietician's actions may prepare me for any further eating problems. It's amazing how much negativity creeps in with the lack of energy - no fuel = no energy.
The last Chemo is certainly something for us all to celebrate and although it won't be with a 'nice' meal, I might go mad and have a small glass of red wine. That tastes alright!
Take care and keep us up to date with your surgery etc.
Thanks for the info re; pain/tingling etc at surgery site, it must be the T. Thanks also Dikat for the info. I know it’s easier said than done to worry about the pain under your arm and feeling fibrous tissue in your other breast Dikat, but I guess now that we have the chemo in us “urrgh” we will be pretty healthy in terms of lack of cancer cells floating around in our bodies. Hopefully we are at peak “cancer free” just now. You’ll certainly feel that after surgery. It’s amaz that your tumour has responded so well to treatment 👍
Good luck Go cat and LB2 for your last chemo, mine is on Wednesday and I’m dreading it. I don’t have a bell to ring either LB2. One more poisoning to go😢 Hopefully we will never ever look back on this truly horrible chapter in our lives.
Well done ladies who have finished the chemo, my last one on Monday so will be relieved to have the PIC line removed then. Feel like I am 2/3 of the way through, surgery done, chemo almost done then radiotherapy to follow although it should not be so arduous. Feeling left out that we don't have a bell to ring on my ward!
On T I have also felt tingling / slight burning senation on my surgery site, must be one of the side effects, I guess it is still healing under there. I had lumpectomy not mastectomy.
Hope the last round of side effects are managable for everyone, enjoy the sunshine if you have some, x
Yay, pleased your last one is done gocat. Hope the side effects aren’t too bad this time. I’m expecting mine to kick in Saturday but must admit I feel mega tired today. Only 3 hours sleep last night though and steroids don’t seem to be giving me energy rush this time. Keep us posted. Ringing that bell 🛎 for you xx
Phew got my last chemo out the way. They tested my blood again as neuts were 1.09 and red cells were HB9 .
All I was told when they bought the chemo bag round was my bloods are in the range but didnt know the numbers. I like to know these things. They wanted to check my neuts hadnt gone under 1.
Anyway, back home now. Guess side effects will kick in from Sunday as per usual but hope they are not as bad as before as just had 80%.
Got CT scan in 3 weeks to check a nodule in one of my lungs but oncologist doesnt seem too bothered about it and says its common to have them. Then will see him 3 weeks after the CT scan for result .
I know I haven’t had surgery yet and not sure where your scar etc. Is from your sentinel lymph node surgery but since having T I have been having pain under both arms not just the left side with the affected nodes. It freaked me out a bit because that’s how I started before being diagnosed so was convincing myself something sinister was happening on the right. The MRI is showing benign breast changes since first MRI and when I mentioned it to my Macmillan nurse who rang me this morning she said it would be down to the chemo, not sure if that helps. I have got my appointment with breast surgeon on 23rd April so not too long to wait so she has told me to mention it to her. She reassured me that MRI would have picked anything up but has said maybe I could have an ultrasound to check what these benign changes are for further reassurance. I will take any reassurance I’m offered. Feel like this is going to be an ongoing battle with all the worries xx
Thank you so much for this info, it’s so helpful and it’s great to know how other folk have got on.
I haven’t done my exercises since starting chemo, so you might be right about that. I will start doing them again again, if the pain continues. I think I did read somewhere that T can cause irritation to surgery sites. My healing has been grand, but I have suffered from terrible inflammation. I feel like Michelin woman.
I did have an immediate diep reconstruction, but at the time no one thought I would need chemo. I don’t think the reconstruction site would be damaged too much with radiotherapy. I think I would be more at risk of constriction if I had have had a silicone reconstruction, but radiotherapy I think you are right, radiotherapy doesn’t come without risks.
Of course I would rather not have it, but i need good advice from my onc, I guess to reassure me why I don’t need it...
Are you going for radiotherapy Wahini? It all feels a bit like an unlucky lottery regarding recurrence.
Anyway, thsnknyou for your input, much appreciated.
Hi Sunnydaze, I felt like the T hurt my surgical site too, especially the removed lymph nodes (I had 33 auxilary removed). I find it harder the stretch fully while before the Ts I had no trouble with this. It seemed like it got worse after T cycle but my oncologist told me yesterday that it was not a side effect of T. Maybe it is related to not doing the exercises every day due to T fatigue?
My radiotherapy is available to me if I want to. I had mastectomy, 2.7cm grade 3 tumour, 7cm DCIS, and 2 lymph nodes involved with macro changes. In some places in the world they would not recommend radiotherapy with this diagnosis. Radiotherapy will only reduce probability of local recurrence and it can do damage as well. Did you have immediate reconstruction or one planned in the future?
Kit kat18, Go Cat, Mary Kamille, absolute Annie and anyone else I have forgotten who might be having chemo today. By eck, indeed! You definitely look great Dikat.
My last chemo is this coming Wednesday, so a few days to go yet. I am dreading it though. I have been getting quite a bit of pain near the sentinel lymph node removal site, has anyone else suffered from that post surgery and on T?
I am actually dreading my last chemo, my body has had enough! Surgery and chemo has been very gruelling. No bell to ring at the end of chemo at my hospital - shame! 😢
Apparently, i am not down for rads and I am not seeing my onc until the 10th May. I need a good explanation as to why not. Mastectomy, grade 3 tumour 4.3cm + DCIS. Only 1 lymph node involved ( a micro met) but probable vascular and lymphatic invasion. I think that would point to rads, but I’m not a medic.... it’s a bit unsettling, so I hope they come up with a good explanation.
Hugs to all and very well done. You are so right. I ain’t taking no crap from anyone 💪💪💪✌️😘
Thanks Marlyn and Wahini for your kind words.
Marlyn it won’t be long before you are ringing that bell now you are at the half way point! The second half does seem to go faster.
Wahini, I don’t blame you wanting to hear both lots of information about rads before making the decision. Keep us posted.
My Oncologist has given me his opinion with which way I should go surgery wise. I will be interested to see if it correlates with what the breast surgeon says although I know that ultimately it’s my decision. Have a good day all. I’m feeling a bit palpy today but might be down to the celebratory couple of glasses of Prosecco I had last night! Never done that on a chemo day before, 🤪
Congratulations DiKat, I know it has been hard for you but you got through and you look great already.
Good luck to those who have their final cycle today, I hope it will go well for you.
i still haven't decided on radiotherapy, I wanted to see my surgeon yesterday but he got sick unfortunately. Him and the oncologist seem to have different views so I would like to see both before I make up my mind.
Just dropping in from the February starters, and wanted to say you're all fantastic! You all inspire me...dikat....ringing the bell!!! Yay!!! I know you probably felt rough but by eck you look good!
Thanks kc72 and good luck for your last 2 chemo. We are all coming to the end now! It felt like such a long way off in the beginning and look at us now! We are all amazing strong fabulous women and I don’t think any of us will take any crap from anyone in the future 💕
Woo hoo Dikat. Great pics. Must be amazing feeling ringing the bell. You’ve done it. Hope you’re ok this coming week and best wishes for your next steps.
Good luck tomorrow kitkat18, marykamille and gocat for your last ones. I’ve got 7th one tomorrow and my last one in a fortnight.
Absoluteannie sorry to hear your news. Hope you’re ok after you see oncologist and next chemo. Keep strong, treatment plans change as docs get more info on what they are dealing with but am sure their goal remains the same - to get rid of it in best way possible for us. Take care.
Good luck gocat and kitkat18 for your last chemo sessions.
It did feel weird ringing that bell when this is only the first part of my journey. I will keep you updated as I carry on my travels. Nice of those of you who have said I look well. Don’t be fooled - mixture of steroids, make up and decent wig. I will probably be on the floor white as a sheet in the next couple of days 😂😂😂
Woohoo Dikat, brilliant that you are finished chemo, it’s been a hard road. Good luck MaryKamille for yours tomorrow, it will be my last one too although there is no bell to ring in my unit. May all our last doses be extra effective and the side effects minimal! Here’s hoping anyway xx
Looking great there DiKat. 🙂
Good luck for your last chemo and with dietician maryKamille.
I've got my last chemo tomorrow. Wont be ringing the bell as they dont have one lol
Hubby said I looked so white today. Hope my bloods are ok. I've been eating iron tabs like they are smarties lol.
Chemo will be reduced by 20% this time because of previous side effects, so hoping that is correct and wont get bad side effects.
Still got slight numbness in fingers and up to yesterday was breathless when walking on the flat, was ok today though when I took the dog out for short walkies. Maybe the iron tabs are working at last. Blood was HB9 last chemo, but they said ok to have chemo. WBC were ok last time but only had 5 jabs after last chemo. Previously had 7 jabs. Anyway, all will be revealed tomorrow lol.
I got to ring the bell too. Maybe a bit soon as I could be back after surgery. but i got such pleasure out of ringing it anyway knowing I would be having a break from chemo. Always trouble finding veins. that i dont need to worry about for a while!!!!
Best of luck on the next stage of your journey but do keep us informed via this forum.
You look far to healthy and young to be trodding this rotten path. Still onwards and upwards
Did you finish chemo today and I hope you got a chance to ring the bell. What is the next stage now for you. I do hope you will progress and have less trouble with SE this time round but at least you will have a break if you have had your last lot today. Every good wish for the next stage
So, 6 rounds of chemo done...it’s probably been the hardest thing I have ever done in my life but despite the numerous side effects I have suffered, I’ve done it. The support from all of you ladies has been amazing and don’t think I would have managed without you wonderful ladies. I know I have got a long way to go with surgery, radiotherapy and approximately 9 months of targeted therapies which I have found out today will be given as infusions now the pertuzimab is being added to the Herceptin. That means more cannulas! I believe I have got the most difficult part out of the way first though. Thank you ladies from the bottom of my heart 💕
Woop 🙌 woop! Well Done Dikat. I hope the se’s are going to be ok. Love and strength for the next week.
Good luck for your last chemo maryKamille. I know I will feel crap in a couple of days but know I will be able to cope with it being the last time and hopefully you will feel the same. Hope the dietician can help sort out your eating problems xx
Been catching up on posts - everything seems to be moving so fast now! You asked about surgery - yes, had full mastectomy last October. Started Chemo mid-December. That's all in 2018 of course.
Surgery was the easiest thing. Once drain is removed (4 days later in my case) there was no pain and it all healed really fast. Did not have reconstruction as I am in my late 60s and did not see the point - operation is longer and if they have to go in again, not as easy. That's what I was told, although I could still have the reconstruction in a year's time if I want it.
I really think age is a big factor in all this and we all seem to be told different things.
Don't panic. It will get sorted and you will find decisions are not so hard to make - they do guide you forward and try to make it sound as though you have options and choices, which we do to a degree.
Lots of hugs XXX
That's wonderful news, DiKat. So pleased for you. I have my last Chemo tomorrow and someone called 'Gemma' is going to find me apparently - she knows where I will be at any rate - and it is to do with dietician. So, I am hopeful that I will find a way around this eating difficulty. Didn't get any respite at all on my last Chemo so expecting more of the same. But at least that bit of the treatment will be over!
I had surgery first. They knew I had lymph node involvement. 26 nodes removed and 17 affected. My invasive cancer tumour was 6 cms but I had ductal cancer of 3 cms as well. Surgery first was the only real option after discussion with my surgeon. My tumour was a fast growing one so my feet didn’t really touch the ground when my case had been discussed at the meeting.
This cancer business sucks. We’re all strong but it keeps on on trying to bat us down. I hope you get decisions quickly now but I know it’s a lot to get your head around. Do you have good family/friends support as well? Thinking of you xx
Fingers crossed with having the previous 80% fantastic response it might mean you can still opt for Lumpectomy and like Shi says, maybe worth pursuing the reverting to EC route. Good Luck x
thank you Shi. I was thinking and have said to my oncologist when she phoned (and while I was picking myself up from the floor from the shock of a consultant ringing me!!!!)
I said and will ask if it is possible to have EC. I dont know why I was changed to T and the annoying thing was that I had to have the ultrasound after seeing the consultant. Usually have it the day before I see oncologist.
I had a similar problem with EC - just a few mm reductions after 2 sessions then a massive reduction after 4 sessions.
I have a great big back of choclates to work through now so trying to stay positive.