Starting chemo on 6th MAY 2015 - triple positive with HER2 - tips please?

Hi Sid

I also have my first round of FEC chemo on Weds. Sorry that I don't have any tips but we will be going through a similar journey. I think it lasts 3 hours so I am going to take books and snacks.

Have a good night on Saturday. I haven't got too many plans but will hopefully have a good family long weekend.

Hiya,

Just popped over from the Main Breast group.

There is a huge discussion on there called the April Chemo Club which was started because so many new members were starting chemo this month.

It contains loads of information regarding anything and everything chemo related and mostly deals with FEC-T, but includes other chemo regimes.

If you want to take a look click here, it currently runs into round 35 pages and a May Chemo Club discussion for new members is being started later tonight.

Hope this is of some help, take care, George & Jackie

Hiya,

Maybe we can share tips and experiences. See if we can support and help each other through our treatment. Apparently on the main breast cancer site there is a May Chemo blog starting. I got a message about it yesterday. There is an April one too with lots of info re FEC T treatment (and I mean lots - a tad overwhelming for me).

I wonder whether it is worth joining that or setting something up ourselves on the under 50s forum? Happy to chat though (private message me if you want to). 

I hope your first treatment goes well and that you aren't too nervous about it. I've got a busy day before - I'm seeing the nutritionist and the wig lady and then off to get more bloods done, another appointment with the consultant and more form signing and off to the hairdressers to get my hair cut (very short)

Enjoy your weekend

Sid

Hi there

I finished FEC-T chemo on 11 March and have now had 2 lots of Herceptin. I'm also waiting for results of genetic testing. If that's positive then I'll be having my ovaries removed and my teenage daughter will have to be tested when she's 18. .

I haven't any tips really as everyone reacts differently. FEC made me very sick after the 1st one so  started having premed anti sickness drugs through the i.v instead of pills as they weren't strong enough but apparently that's unusual.

You mentioned shaving your head. The wig people I went to advised against doing that so I just got it cut as short as possible once it started falling out. I know a lot of people do it though. My hair  is now coming back fast and have a g.i Jane now. Unfortunately, that's where the resemblance to Demi Moore ends!! The hair loss process is a bit upsetting at first but once it's gone, it's surprisingly liberating. I used to spend ages in the morning washing, blow drying and straightening. I can't see me going back to that. I think I'll be staying short. I've never bothered wearing the wig either. I stuck to hats and now it's warmer I just front it out. The first time I did it was the hardest but people don't tend to pay much attention.

Is it 18 weeks chemo? I had 3 FEC and 3 docetaxel. You'll be amazed at how fast the time goes. Before you know it, you'll be finished.

If you want to know anything else, I'd be happy to try and answer.

Good luck with your 1st treatment

Hi Weeble

thanks for the response. I hope the genetic results come through soon for you. I've been waiting 2 weeks so should get my results back in another week and then I can decide what I want to do.

Did you have the herceptin at the same time as the FEC? I am going to be given the herceptin with the FEC and the pertuzumab. I hope I don't get double sickness?? Thanks for the tip about the hair. I will have a crew cut on Tuesday. I used to have my hair very short but now I have very long curly hair so losing it is not something I am too happy about. But it will grow back hopefully.

I'm not sure at the moment how many weeks chemo I am going to have - probably 6 months worth however this might change depending on how I respond and dependent on what type of surgery they decide to do. Initially they said a mastectomy then they said maybe lumpectomy but probably mastectomy. I will require a hysterectomy even if I don't carry the BRCA gene mutation.

You sound very positive which is reassuring. So thank you again for replying. I am sure I will have lots of questions once I kick off on Wednesday. 

Sid

Hi again

No I didn't have Herceptin with the FEC. I was supposed to start it with my last docetaxyl.

Unfortunately, I had an allergic reaction to my 2nd docetaxyl whch meant the 3rd/last one had to be given with hydrocortisone and more slowly so oncology decided to give the Herceptin on it's own at a later date. I'm now coming up to my 3rd Herceptin and it's a walk in the park compared to chemo. I've had no side effects with it whatsoever.

I had a bilateral mastectomy (no reconstruction) on April 10 and am recovering well. This was my choice as my cancer was bigger and more aggressive than they originally thought. I wanted to reduce the risk of recurrence as much as possible and it was a no brainer for me. It's a bonus not to have to have mammograms in future especially as the one I had failed to pick up the problem.

You're very lucky not to have to wait long for your genetic test result. I have been told 3 months but it doesn't really matter as it won't affect me so much and my daughter is only 16 so too young to be tested just now.

All the best. Hope to hear how you get on with your first treatment.

I will be a day behind you, I am starting chemo therapy now on thursday 7/5. I am having the chemo neo adjuvant and will be having surgery once the chemo is finished. I am hoping that I won't suffer too badly with side effect because my plan is to carry on working and I also have 3 young children.

Hi Mimselina

Just reading your post and am struggling to find the right words. I cannot imagine what it must be like to go through something like this with 3 young children to look after and whilst continuing to work. Well done you and I hope you manage to do that.

My son is older so thankfully is self sufficient although the bank of mum is still very much up and running. I want to work too  but think I will have to do this sporadically and only when I feel up to it. I'm feeling quite apprehensive about going in to work whilst not 100%. I haven't told many people and don't want them to see me with my hair loss etc - I am a very private person and don't want to have to justify myself to people. My  day to day job is very physical so during my treatment I will have to be put on to restricted duties and there's always someone who questions why and for how long and then feels they need to share this with their colleagues (and mine).

Do let me know how you get on and whether you feel strong enough to work. If it helps I can share my day to day side effects as I will be a day ahead of you??

Hi Weeble,

Thanks for the reply. I am finding it very interesting and useful to hear about your experiences. Glad to hear that you are recovering from the surgery so well. I am considering bilateral mastectomy too so it's great to hear your personal views on this. 

When you had the allergic reaction what did they give you and how long did you take to recover from this reaction? That must have been quite horrid for you. I am also encouraged by your positivity and pragmatism. I have heard so many people getting so down and depressed with their cancer that it is a breath of fresh air to read your progress.

I am a very positive person and pragmatic too. I just want to get on with this, with as little drama as possible and deal with any issues as and when they might arise. I will update you next week after my first session.

best wishes to you and please continue to update me on your progress.

Stay strong and keep smiling.

The sun is shining and the trees are in blossom. Sid

Hi Sidney

I was told beforehand that an allergic reaction to docetaxyl isn't unknown. All they did when it happened was to stop the infusion and give me hydrocortisone and piriton. They then waited half an hour and started the treatment again but gave it slower. I was absolutely fine after that.

I feel I have much to be positive about and this whole episode in my life has made me a much stronger person. I can't say I didn't have weak moments but they pass. Friends and colleagues have said to me they 'couldn't do it' but I think until you find yourself in that position, you don't know what you're capable of and most people would surprise themselves.

I had a follow up 12 days after the mastectomies with my surgeon and was told all the tissue they removed was clear. As far as I'm concerned, I'm now cancer free and the Herceptin and tamoxifen are going to keep me that way.

Now, I'm going to have to start thinking about going back to work (not so good)!

All the best for Wednesday. Feel free to message me if you want to know anything else.