I am under no illusions that chemo is a walk in the park but I never could have believed I would be so happy to be told I have a start date.
I never heard again from my NHS consultant so I emailed this morning asking to be discharged. I was expecting to hear on Friday but it’s now Tuesday so I’m drawing a line under it.
We are going away on Friday for a few days in Devon before the chemo begins so it will be a lovely little break - calm before the storm!
It has brought it home to me how for some people who are waiting for scan results, the news will be bad and how devastating that must feel.
Life is so precious. I promise I will be making the most of the next few days.
Thanks ladies. I’ve not really been online for the last couple of days. So results of today…So all clear margins, no lymphnode involvement! Will need 6 cycles of chemo which will start in about 6 weeks ish to be confirmed 3 weeks apart, 1 year of Hepertin, some radiotherapy then Tamoxifen for 10 years. Back to work next week for a couple of weeks whilst I’m waiting for appointments then going to ask to work from home during chemo treatment to minimise risk of infection…at least that’s the plan
@chellebelle congratulations on the good news. Great that you have your plan mapped out too. I hope it goes as well as it can. I have worked on and off all through chemo. I managed 8 working days each cycle with 7 working days off. It is doable but i got more tired each cycle so the last two were much harder. Worth letting your work know just to manage their expectations. Let us know when you start and join your months chemo forum. We’ll be rooting for you.
Hey @chellebelle So happy for you that there is no lymph node involvement! That is great news. I start my chemo 2 weeks today. I have it every 2 weeks for 4 cycles then weekly for 12 weeks. Then I will have the mastectomy and reconstruction and radiotherapy. My new team at the Marsden are amazing. All my confidence and faith is restored. This is a good day for us. @frazzledmcsazza you are inspirational. I love that you continued working. I hope to be able to still do a decent amount of work and I can work from home so I can even have my laptop in bed. If I start chemo this month then I guess I should join the February starters forum then. Wow! This IS moving fast now. Yikes!
@salbert yes join the Feb forum. There are all different types of chemo some have more side effects than others so if you find you can’t work don’t be too hard on yourself. Glad you have a date now and confidence is somewhat restored.
@chellebelle Thats great news that there is no lymph node involvement.
@salbert so pleased you have a date and a treatment plan.
Please join the monthly chemo starters group, you will meet/people going through the same or similar to you, offer help, support or just be there to listen to you.
As far as work, ensure work are aware how you may be during chemo, you may have days when you can’t work at all. I think it is sensible to work from home if you can.
Most of all be kind to yourself. Chemotherapy is not easy but it’s doable. Some things may need to be put on hold and that’s ok.
Thanks ladies!! I guess mine will probably be in March as they said it’s gonna take about 6 weeks before I start but will see. @salbert hope everything goes smoothly for you x
Thanks @frazzledmcsazza@naughty_boob@chellebelle I will join the February Starters then. I feel like I am graduating and going to big school where there the teachers will be harsh but get me great results!
I have to be quick as I am on holiday and husband is waiting for me to go out. I will need to go over all the chemo advice that has been on this thread in weeks gone by to prepare myself. Right, better get in the shower, I’m getting nagged. I think we are off to Salcombe.
I read through chemo starter threads to get an idea of what to expect. Obviously nearly everyone is on different treatment plan sometimes you will find somebody on the same chemotherapy regime so you can compare side effects.
I’ve had such a lovely holiday. We are back tomorrow or Thursday (may stop on way home) and then it’s full steam ahead. I must have a read of all the cold capping stuff and February chemo starters and get fully prepped. It is daunting, I must say. I guess everyone feels that way. BUT it gives you the best chance of beating this disease and being super-shiny and healthy for the future so it’s the only path.
Another HER2 positive gal here! I was diagnosed in Jan. Found a lump while breastfeeding my 4 week old baby girl. I had just turned 34 and a brand new mom; talk about your world flipping. I’m mid way my chemo now and doing so much better mentally, just taking things one day at a time and focusing on my recovery. My husband and I are really good are doing research; he has a PhD so he does it for a living. First, I want to say that HER2 no longer belongs in the “bad” bucket. Many oncologists
would actually say is the most responsive to treatment; so in a way we are fortunate (at least I like to look at it that way). Sure, it is an aggressive type but the prognosis is really good. After 5 years , your chances of recurrence are the same if NOT lower than hormone positive cancers. I hope you are doing great! We got this
Nice to meet you @aroja086 What a positive message from you. I am also glad to hear now that HER2 has flipped from being one of the worst to one of the very best. It’s great that you are looking at this in a positive light when you are so damn young. I wonder if I would have felt that way at 34 and with a new baby. Probably not. All power to you and great to have your good energy on our thread.
@frazzledmcsazza I started chemo yesterday. I did one cycle of EC and cold capped. Last night I was sweating and couldn’t sleep so I cleaned the kitchen at 2am! I got to sleep around 2:30am and woke at 7am. I’ve worked all day and Dadsat. This is entirely due to the steroids, I am told. My nurse said that if I am still bouncing off the walls on Sunday then just have the one tablet in the morning, none at lunch and be prepared to hit a slump on Monday. Yikes!
Welcome to the group. Im so sorry to hear of your diagnosis especially with your baby being so young. It’s hard enough having a baby without the added inconvenience of cancer and you are so young. Are you aware breast cancer now also has a young women’s group that may be helpful to you.
Glad your first cycle went well, steroids work really well but they do keep you awake and wired! I’m sure some people enjoy that but not for me I hated the feeling. I only had them for 3 days a week for my weekly chemotherapy and I understand that different treatment regimes need more or less steroids.
Dear @salbert, I’m pleased to read you have the first EC behind you. For me the first was daunting in being a so much of a trip into the unknown. You and everyone else is so right about the steroids. I too was totally wired while I took them.
Take it steady and listen to your body.
Sending pink love. Sue
PS I’m mid rads now. This is day 7 of 10. Also being estrogen positive am now on the infamous Letrozole and Ibandronic acid tablets daily. X
I’m glad to hear you all had the same experience on the steroids. Another wired night is behind me and I’m feeling so energised and upbeat that I zoomed into my Saturday Drama Class this morning and took the whole session working on their LAMDA pieces. It felt wonderful to be able to do that but I know it’s all the steroids. When does the hair start to fall out, please?
Hope the radiotherapy is going well. I had 5 very intense days of both sides being done at the same session. Had terrible back and rib ache which still continues 5 weeks later. Advised to take paracetamol and give it time.
Is the Ibandronic acid tablets similar to zoledronic acid infusion for the bones? I have lots of aches and pains in my joints, hard to know if it’s Letrozole or just menopausal symptoms after stopping HRT last April. Told to take for at least 3 months, if not up to 6 months when for some the side effects lesson. Finger crossed as I don’t sleep well with the hot flushes/surges, sometimes I can get rid of the heat it lingers for hours!
Hi @naughty_boob and others. I’m putting most of my hot flushes, aches and pains, tiredness (mainly due to not sleeping well) etc down to the letrozole which I’m giving 3 months as apparently for many the symptoms subside by then. Let’s see. Yes Ibandronic Acid tabs daily is similar to the infusions. There are pros and cons to both but again I’m persevering for now. Radiotherapy has been relatively straightforward so far, but I’m told issues can appear after treatment ends, so I know I’m not out of the woods yet. With so many things going on still - Letrozole, IA, Rads, and ongoing Phesgo it’s hard to know what’s causing what in all honesty. To be honest I’m a bit fed up with it all, but committed to solidering on for a few weeks yet. Did I mention the over-active bladder that’s appeared too?..!!!
@salbert well done for getting through cycle one. You asked about hair falling out. It will depend on your treatment and whether you are cold capping so unfortunately as is often the case it is different for different people. I was on a different treatment to you (Docetaxel, Phesgo and Carboplatin) and I didn’t cold cap as one of my treatments said universal hair loss (so it felt a bit pointless). I started to lose my hair about two weeks after the first chemo. It was pretty much all gone before the second chemo. I had cut it short before treatment started but it was still a difficult few days. I finished chemo on 11th January and it is starting to reappear very slowly. Think I might have a full head of very short hair sometime in April (Fingers crossed). I hope that helps. Remember you might be different. Some of the women on my monthly chemo forum managed to keep all or most of their hair. Good luck. I hope you are one of the lucky ones and if not that you managed to cling onto the fact it is temporary.
@aroja086 sorry to hear of your diagnosis and good luck with your treatment. You sound like you are doing great.
Yikes!
