Big Decision

Hi Thirds

Sorry to hear you are having to make this big decision. Like the regimen suggested for you, I had 6 rounds of chemo at three week intervals: 3xEC followed by 3xdocetaxel plus herceptin and pertuzumab. I am not a spring chicken and I managed it.

Not sure what drugs your onc is planning for you? I found the first few days after the EC, I felt a bit poorly, but after that things improved each cycle till it was time for the next. With the docetaxel, I felt least well at about a week after getting the drugs and usually had a day when I stayed in bed resting at that point. It also gave me a loose tummy. 

The team were very good and gave me great support meds. They were also at the end of the phone each day if there was anything I wanted to check out or talk over. Most days during chemo, I was up and dressed at my usual time. However, it was wintertime and I often had an hour or so of nap on the couch after lunchtime. As Sheilding, I did online shopping and got food supplies delivered. I had good family near by, who formed a support bubble with me.

I lost my hubby a year before also, but that made me more determined to do what I can to survive this. My grown up kids dont need to be losing their old mum so soon afterwards.

I completed the chemo in March 2021, then had surgery and radiotherapy. I still get the H&P every three weeks and that continues till March 2022 and I have started on Letrozole.  All in all, I am feeling pretty good now. I am back to my usual busy bee self doing gardening, housework and even have been painting the shed and fences etc with wood preserver this week!

The chemo is doable, with a little planning around how to manage. Hopefully you will also have some family or friends who are not too far away to help out.

Wishing you all the best

Wallydug

Thank you for your reply Wallydug.  I know that Docetaxel is one of the drugs that will be used.  Also epirubicin, paclitaxel and cyclophophamide.  To be honest it was a huge amount of information to take in as I had not been expecting chemotherapy to be suggested.  She also went through an awful lot of side-effects that rather scrambled my brain.  Did your children have to come to take care of you at any point? I know that my daughter would do that but she is self-employed and has already come twice when I had my operations. I really don't want to burden her again unless I have to. I found your email very reassuring.  I am thinking that I will give it a go.  Thank you

Hi Thirds

The only one on your drug list that I did not have was the paclitaxel. My brother gave me a lift to and from chemo appointments. I could have driven there each time, but was wary about driving back as I worried about how I might feel. I didn't need them to take care of me,  as such, however I was delighted to see them when they popped in. 

I know exactly what you mean about the side-effects listed on the consent forms. Extensive is an understatement! I was scared witless too, however, did not have the vast majority of them. Of course, no one knows how they will react until they try them. I think medico-legally they have to list every possible thing that anyone has potentially had which could have been related to the chemo

If you are having epirubicin with cyclophosphamide, ask if you can have Aprepitant as a support med. for those doses.  I wasn't given that the first round and had a bad headache that night. When I told the Onc at the review appointment, he wrote me up for this support drug. I believe that the tabs [one an hour before chemo, and one on each of the next two days] are over £100 each. I had to remind the chemo nurses at the day hospital each time that I was to get these and that was always their response "these tablets are over £100 each"! However, they transformed the experience. If you are going to be having EC together ask for this support med. I think the NHS always likes to try the cheaper drugs first, but if you are going to be home alone you want the smoothest time possible.

Also, with the docetaxel, my Onc offered to decrease the dose because of the diarrhoea. I used loperamide, up to the maximum dose, which they also gave me. I declined to have the dose reduction because I was afraid I might not get the full treatment effect and I knew that I would not forgive myself if the treatment hadn't worked. I would always have wondered, what if....I was not going out anyway, except to medical appointments, so not really going far from a loo.

It was doable and on the basis of my experience, I would not want to put anyone off having chemo treatment.

In the end I got a complete pathological clearance. After surgery the pathology report showed that there was no cancer left where the lump had been or in two nodes that they could tell had previously been cancerous. They were completely fibrosed. Of course I would prefer never to need chemo again. However, although I would be pissed-off, I would not hesitate to have it if it was going to prevent recurrence or buy me time.

My mantra to get by on the days when I did not feel so good was: "If it is doing this to the whole me, just think what it is doing to the pesky cancer cells" and "this is just for a short while".

You could start and see how you get on. As my story shows, they can tweak the support meds and they can tweak the doses if need be. I am happy to talk to you if you want.

All the best

Wallydug

Thank you so much for your informative and supportive email.  I am going to give it a go.  The information about the support meds is very useful.  I really appreciate you taking the time to reply to me.  It has helped so much.

Totally agree with what Wallydug is saying. Similar experience. Had 3EC, then 4 Docetaxel plus phesgo (injection to target the HER2+ bit).

Definitely request the Aprepitant... Made the second and third EC much easier. Don't worry about the BCN commenting on the cost... Mine did too. LOL. 

Stock up on provisions so you can keep any shopping to the minimum of fresh stuff needed. I normally tend to batch cook and freeze so during my chemo we worked our way through the freezer.

I'll be honest, I did find the chemo challenging but at the same time totally do-able. For me, too nervous to drive myself there and a little wobbly after, so not able to drive myself home. Personally, I would find a way to get a lift there and back. All the best.

Good luck.

Hi 

I had a lumpectomy in August and will be seeing my oncologist on the 22/9 to discuss chemo. The drug regime you mentioned is exactly what I'm getting (this could change I suppose when I actually meet her).  I also need to have radiotherapy and take Tamoxifen afterwards too, 

I find it so bizarre that my cancer has been removed and I have clear margins. I feel fit and well, yet within a matter of weeks I'll be struggling with chemotherapy side effects. I know that the chemo is there to 'mop up' any remaining cancer cells but it just seems such a strange situation. 

I suppose we have to trust the medics and our faith in them. I'm 52 and have a lot of living still left to do. 

Good luck with your decision. 

Lou x

Thank you for your reply and your suggestions.  I am going to go ahead with it and yesterday was really busy with so many appointments being arranged. I feel that I need more information.  Hope your treatment continues to go well.  I will hang onto "this is doable"  All the best.

Thank you Jacala for your response.  I was surprised too because they said that they had got everything cancel cell wise and then chemo and radiotherapy are suggested.  The oncologist did say that it was my decision and the improvement in the odds of living longer are not huge.  (You can use the Predict tool that they use to work this out for yourself, it is on the internet.)  I think as you say we have to trust them and I really don't want it to come back.

All the best for your appointment on 22nd which will be the day of my first chemo.  Hope your treatment goes well.

Take care.

Thirds

Ive used the Predict tool, it's weird because it's numbers, percentages that seem irrelevant to me as a person. 

I don't want chemo (who would) but if I refused it and the cancer returned I just wouldn't forgive myself so it's gotta be done.

Hugs x