Chemo following mastectomy

AlisonMew

Hi! I am a 55 year old woman that has just undergone a bilateral mastectomy following my TNBC diagnosis. My tumour was 18mm with two other DCIS lesions in my right breast. The sentinel lymph node was clear, much to my relief! No evidence of disease in my left breast but I had had a biopsy of suspicious areas in that breast 15 months ago (where nothing showed up in my right breast!), so I decided to remove all breast tissue and have an immediate reconstruction. That was performed on 18th October and I will start chemo (FEC-D) on the 19th Nov. I will have 3, 3-weekly rounds of FEC, followed by 3, 3-weekly rounds of the Docetaxel. As I have had a full mastectomy, I will not need radiotherapy. I have been reading others' blogs and am keen to find out when the side effects begin after the first round of chemo. I have a couple of events with my kids 6 days after the first treatment and wondered if I will be up to attending these?

I know the next few moths are going to be rough, but feel it is a small price to pay for doing everything possible to ensure that the cancer doesn't return. This will just be a speed bump along the path and Iam confident I will come through it just fine!

 

Deanne

I finished chemo seven weeks ago. I also had 3x FEC and 3x Docetaxel. Everyone has different side effects with chemo but for me I was over the worst of the FEC by about day 5. I would have been fine to go out on day 6. However, you will have to be careful because of your immune system. This is usually at its lowest from around day 7 to 14.

As a general pattern with FEC I used to give myself 5 to 7 days to get over the nausea and tiredness, then limit my exposure to crowds etc for the second week and then enjoy normal life the third week before it all started again.

Docetaxel was different and I never felt really good at all while undergoing this chemo. But everyone is different and you may have a better time than I had.

Seven weeks after having that last dose I feel great. I am able to do normal activities, exercise etc. I have had to have radiation as my cancer had spread to the lymph nodes. I am almost finished this and am looking forward to being over the speed bump soon!

Hope this info is helpful. I wish you all the best for your chemo and hope that you are able to attend the events with your kids. Look after yourself.
Deanne xxxx

Deanne

I finished chemo seven weeks ago. I also had 3x FEC and 3x Docetaxel. Everyone has different side effects with chemo but for me I was over the worst of the FEC by about day 5. I would have been fine to go out on day 6. However, you will have to be careful because of your immune system. This is usually at its lowest from around day 7 to 14.

As a general pattern with FEC I used to give myself 5 to 7 days to get over the nausea and tiredness, then limit my exposure to crowds etc for the second week and then enjoy normal life the third week before it all started again.

Docetaxel was different and I never felt really good at all while undergoing this chemo. But everyone is different and you may have a better time than I had.

Seven weeks after having that last dose I feel great. I am able to do normal activities, exercise etc. I have had to have radiation as my cancer had spread to the lymph nodes. I am almost finished this and am looking forward to being over the speed bump soon!

Hope this info is helpful. I wish you all the best for your chemo and hope that you are able to attend the events with your kids. Look after yourself.
Deanne xxxx

Robyn W

I am at day 5 of my second round of chemo,which is a ..Its not too bad actually,and I have found the things that have helped me the most so far,are drinking water(lots), eating well,resting EVERY TIME you feel like it,and walking every day(my oncologist told me that you can't underestimate the importance of this).The most noticeable side effects for me are slight nausea,tiredness,which is def more this time,and very unusual food cravings There is so much that I can't eat,but the next day I suddenly feel like it!!And a yuk taste in my mouth all the time. I have liked using Biotene mouthwash and toothpaste.The worse days for me are day 5 to,7,and because of the risk of infection from days 9to 14, I have stayed away from shops ,schools public transport etc,on those days.For me it's not worth taking the risk.Like Deanne says,everyone is different,and I just think you need to use common sense.I might just say also,on the days when I am really tired,I have no interest in going out.It is not tired like you have known before!xoxoxRobyn

AlisonMew

Dear Deanne,

Thank you so much for your quick response. My son is receiving an award at the Exhibition Centre for coming first in Victoria in a persuasive writing competition. He is 17, and I desperately want to be there to see him receive this award - I am just so very proud of him!. Then later that same night, he leaves on a 6-week exchange to Germany and I want to go to the airport to see him off. So I guess I need to be aware of limiting contact with crowds as much as that is possible.

When I read other posts on this site, I feel a bit of a fraud as I do not have the feelings of anger or depression. Don't get me wrong, I have my moments of feeling sad and emotional, but mainly, I am feeling as though I have been incredibly lucky to have found this early, to have been able to have the surgery and to be receiving great care! However, I am also aware that it is early days for me and that I may have to remind myself of some of this positivity when I am feeling crap after several rounds of chemo!

Thanks again for resonding to my questions. I hope you continue to feel great and climb back up again. The power of connectedness is just wonderful - thanks again and all power to you!!

Alison xx

AlisonMew

Hi Robyn,

Thanks for your rapid response and for your advice. I am walking every day to help recover from the surgery and to keep my system (ie. bowels) going as I am still on some strong pain killers. I am also trying to eat well, even though I do not have much of an appetite, so I can be as strong as possible for the upcoming chemo. I will take on your tips for my treatment regime and hope to keep as positive throughout - although I am sure this will be a challenge at times!

Thanks again!

Alison xx

Robyn W

You are so right about the walking.I am almost obsessed with it!When I spoke to my oncologist at the first appt she asked did I exercise,and I told her I walk a lot.Her reply was,DONT STOP!I have not forgotten this,and like you said,it keeps your bowel,and also your muscles,functioning.It doesn't take long for things to stop working .xoxoAll the best,and remember that this site is the most amazing place to come for advice from all the ladies who have done it!

AlisonMew

HI Julia,

The advice was that since I had a bilateral mastectomy with no lymph node involvement, I would not need radiotherapy. If I had chosen a lumpectomy or single mastectomy, then I would have had to have RT. Not sure if the size/type of tumour had anything to do with it, but I think it was about little/no breast tissue remaining after surgery.

Alison

Deanne

Hi Julia
I was told I would only need radiation after my mastectomy if it had spread to more than one lymph node. Cancer was found in 5 of mine so hence the need for radiation for me.
Hope this answers your question.
Deanne

Janey235

Welcome to this network where none of us want to be but welcome all the same. Love your attitude Alison, you are beginning this 'journey' with the best mind set you can. I something's get sick of other people telling me that being positive is the best medicine but I'm sure not going to go around with a defeatist attitude.

My chemo was 4 by 3 AC and 4 by 3 Docetaxel although my last Docetaxel was cancelled so I only had three. With the AC (similar to FEC) I started to feel the side effects around day 3 to 4 and they lasted for at least the first week. The second when your immunity reaches it's bottom level, you're supposed to be very careful. I felt quite good that week but I tried to avoid crowded places. Perhaps you can check with your Oncologist and if you are very careful to use a sanitising hand wash and avoid touching things like hand rails etc., you could go to your son's event. Not sure about the airport though as there are international travellers that you may come in contact with who may be carrying germs you shouldn't be near. I never thought I'd be this paranoid about hygiene but your risk is very real. I ended up in hospital with infection twice during my chemo.

Having said all that, you may not experience side effects that badly and you may cope very well in the 'low immunity' week. Everyone is different as they say. But gear yourself up for Docetaxel, I found it was a nasty drug.

I wish you wellness for your chemo Alison.

Love Janey xxx

PS you look great for 55!

AlisonMew

HI Janey,

Thans for your reply - yes, I had been thinking that I probably wouldn't go to the airport. You are absolutely right about risk of infection - I trained as a microbiologist, so I really should know!! Somehow, when it is me, I don't think as clearly!!

I have another week before the chemo starts and part of me just wants to get it going, so i can get through it and another part of me is happy to just enjoy this last week of pottering around, going for walks and coffee with friends. I also need to ensure my son has everything he needs to go to Germany for 6 weeks.

Hope you are travelling well.

Love,

Alison

PS. Thanks for the compliment - the photo was taken 2 years ago so I can't claim it is very recent and I'm sure I have aged a bit in the past few weeks!

AlisonMew

It has been a rough week since the first round of FEC - with nausea, stomach upsets and now bone pain in my lower spie from the Neulasta. I will be asking for stronger anti-emetic drigs next time! Panado, Osteo is helping with the bone pain but I wondered how long I should expect this side effect to continue? The nausea is still present in the background and I am stil taking Pramin 4 hourly, some 7 days after the infusion! HOw much longer??

I have managed to attend my son's medal presentation on Monday and even went to the airport to see him off (taking care not to get too close to people and to wash my hands thoroughly when I got home!) - MOnday was a good day but then I crashed yesterday (the next day) -perhaps I tried to do too much?

I feel like I am blundering through this with a blindfold. I know wveweryone is different, but surely someone can give me an idea of how long these side effects with go on for??

Alison

Deanne

Sorry to hear you are still feeling the effects of the FEC. It is not knowing how long the effects are going to last that I found the hardest and most frustrating part.

I found that eating what I felt like rather than what I would normally eat helped. It was often salty foods although I craved roast pumpkin and broccoli too! I nearly drove everyone mad sending them out to get my latest craving. I tended to eat small amounts but very often. I found this helped more than the medication after the first 3 days.

I sometimes felt a liitle nausea until about day 10. I found walking helped also. Drinking very cold water helped me too. I always felt really good for a week or so before the next round and made sure I packed lots of good times into that week. I would spend my not so good days planning for what to do when I felt better.

It is a bit of a roller coaster ride. You feel better one day then not good the next as you are discovering. Just make the most of the good ones and veg out on the not so good ones. I concentrated on using any energy I had to prepare good food and go for a 30 minute walk. Anything else was a bonus. You really have to just go with it.

Hope you are feeling better soon. Take care. Deanne xxoo