Starting iv chemo and celebrating a special 21st birthday

A lot has happened since my previous post on 7 August.

The bottom line health-wise is that I have moved onto a new line of treatment, intravenous chemotherapy involving a drug called paclitaxel. I had my first treatment session on 23 August and my second session yesterday.

Life-wise, our younger son has turned 21 and it has been a real joy to be able to celebrate this milestone.

We thought I might be catching a bit of a break on the cancer front. However, blood test results from a few weeks ago showed that, overall, things really weren’t going well in terms of my bone marrow function. In addition, the important CA 15-3 tumour marker had gone up again, meaning the cancer was more active than it had been recently.

The situation was complicated but the consultant concluded that it was time to come off the treatment I’d been on for almost four months – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin), taken once daily in tablet form – and move on to the next line of treatment, iv paclitaxel.

I knew it was coming and I understand the rationale for changing. We really need to get a grip on the bone marrow issue and we can’t ignore potential tumour progression. However, I’d hoped it might not happen for another few months. We’d discussed the matter at length and the consultant knew how keen I was to hold off iv chemo for as long as possible.

There were various reasons for this.

One reason is that I’m now tied much more to the hospital. I’m on a 28-day treatment cycle, with treatment sessions on Day 1, Day 8 and Day 15. Each session takes about two hours. You also need to have blood tests done before each of the three sessions of each cycle, etc, etc, etc.

Another reason is that I know this drug. I had it as part of my treatment for primary breast cancer way back in Autumn 2015. It had a very good effect on my cancer then and we obviously hope it will this time too. However, it is also responsible for the “chemotherapy induced peripheral neuropathy” – essentially nerve damage – that I have in my feet that even now can stop me from sleeping. During the day it’s not so bad, but it is there. We’ll keep a very close look-out while I’m on paclitaxel now for signs of additional damage. It would be too bad if the treatment worked well but again brought with it this distressing and, it has to said, potentially debilitating side effect.

Then there are all the other common side effects, including likely hair loss. I didn’t like losing my hair last time. If I lose it this time, I don’t think I’ll like it any better.

All in all, I think I can be forgiven for feeling rather nervous about starting this particular treatment again.

Despite my concerns, though, now that I have started treatment, I’m desperate for it to work and for me to stay the course. It’s not as if the previous regime I was on was a breeze. In fact, at times it was hideous, but you put up with a lot when you know there are limited options ahead of you, each potentially more toxic than the previous one.

Discussing it all with the consultant on 11 August, any hopes I had that my husband, two young adult sons and I might fly off to Spain in late August/early September went flying out the window. Following right behind were plans for a trip to my home city of Glasgow that I’d hoped to take before going to Spain. Other trips were and are – as of today, at least – still planned, potentially for later in September and certainly for October.

I’ve had dozens and dozens of appointments with doctors since my diagnosis of primary breast cancer in the summer of 2015. I’ve cried at only a few. This was one of those. It felt like we were definitely moving into new territory and I was feeling very sorry for myself.

The transition to chemo and the weeks preceding the move have been really quite traumatic. This may not be a complete list but they have involved tiredness and extreme fatigue, a lack of appetite, dry mouth, insatiable thirst, being tested for diabetes, sore feet, badly disturbed nights, joint pain that I’ve been told is not related to the bone mets, dental discomfort, a 2am trip to A&E with a high temperature and suspected serious infection (nothing was found), a couple of blood transfusions – and me feeling very, very low and dejected.

This is the fourth line of treatment that I’ve been on since I was diagnosed in April 2019 with secondary – incurable but treatable – breast cancer. When I was diagnosed, it had spread to my bones, with “bone marrow involvement”, meaning it was impairing the ability of my body to make healthy blood.

More than well over two years on, the various drugs I’ve been on have managed to keep the cancer from spreading outside of my bones and into, say, my liver, or my lungs, or my brain. I would say I have been largely healthy, despite experiencing some quite nasty side effects and, of course, despite having the illness in the first place. However, the real and serious problem at present is bone marrow suppression. We know the cancer itself is causing at least some of this but it doesn’t help that the treatments themselves can also cause your haemoglobin and neutrophils to fall. For those of you who are interested in the detail, my platelets are also not in a great way – that’s a new development and a new concern.

The plan initially is to have four 28-day cycles of iv paclitaxel, assuming it works and I cope with the toxicity. The number of cycles could be increased to six if things go exceedingly well. I’m not second-guessing anything. I’ve already had to have a one-unit blood transfusion and several neutrophil boosting injections between the first and second sessions.

Let’s hope things settle down, that I’m not afflicted with additional peripheral neuropathy, and that I can make the most of the two-week breaks between cycles.

I’m to have blood tests tomorrow before seeing the consultant for a mid-cycle debrief. They’ll take an additional vial of blood for a “cross-match”. This is when they test a patient’s blood against a donor’s blood to check that the two are fully compatible. This happens regularly now when I have my regular blood tests done, “just in case” I need a transfusion. I’m getting used to it.

I think I’ll need yet another set of bloods done the day before my third treatment session of this first cycle, which is scheduled for 7 September.

To say it’s been a tough few weeks – physically and emotionally – would be a huge understatement. Through it all, ordinary life goes on. Today, for example, I’ve felt great. I wrote this blog and this evening I went out on a three-mile walk. Earlier on, I had a nice chat on the phone with one of my brothers. Yesterday, between having bloods done in the morning and my chemo session late afternoon, I did a few hours’ work. I’ve been taking a bit of a break from work recently.

I’d been feeling so wretched that I hadn’t been meeting up so much with friends. You feel less like making plans to socialise in case you have to cancel at the last minute. A couple of weeks ago, my husband and I feared we’d have to pull out of at really short notice a lunch date in central London with friends we hadn’t seen since last summer. We’d really been looking forward to it. I’m so glad we made it – not just for the company, which as always was excellent, but to experience the zaniness of the place we had lunch. The photo is of Cath and me, somewhat over-excited in the sci-fi toilets; each pod is an individual loo!

Some days, I really haven’t felt like getting out of bed – especially when I’ve slept particularly badly that night. I do, though, one always feels better for it. On those days, even picking up the phone when someone calls to chat can be a real challenge. Friends and family know the situation well enough not to be offended.

It can’t be easy for my husband but, throughout this whole thing, he has continued to be an absolute rock.

Among all the turmoil, our younger son turned 21 – a real highlight and milestone for any family. Family-wise we did a couple of low-key things – not on the day itself as he was off in Cornwall with friends. After the year many young people have had, we loved thinking of him mucking about in the sea and on the beach and enjoying big wide open spaces on the very day of his 21st. We have no doubt whatsoever that he was feeling the parental love and affection from a distance.

I think I deserve a medal for the most quickly and imaginatively cobbled together birthday cake – a slice of malt loaf with a candle on top! A few of our son’s friends popped round one evening soon after his birthday for drinks before heading out to a party. I decided they should sing happy birthday to him. They duly obliged. You can’t say I don’t make an effort!

6 thoughts on “Starting iv chemo and celebrating a special 21st birthday

  1. Hi Maureen, So sorry to hear that you’ve had a rough summer. Your strong spirit & ability to enjoy life to the full, no matter what, never cease to amaze & inspire me. Not sure if you can have people sit with you during treatment but am happy to keep you company if it’s allowed!! Sending lots of love & happy bday wishes to F, Karen xx

    Liked by 1 person

  2. Hi Maureen, You’ve had such a tough time and I’m so sorry you’ve got to go back on paclitaxel. Do you have meds for the neuropathic pain? I find they help me sleep better. Well done for the walking. I’m always impressed by your determination. Love the 21st birthday cake! Happy birthday to your son, love Julia x

    Liked by 1 person

    • Thanks, Julia. I loved the cake too! We’re working on the neuropathic pain – trial and error. Long walks during day exacerbates it; sleeping tablets knock me out sufficiently for me to get a decent sleep but that’s not a long-term solution. Amtryptiline an option. Onc keeping v close eye on things. xx

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s