Hi looking for advice or experience anyone might have taking this combination. This will be my first line of treatment for this cancer as have been on watch and wait for over a year. I have two tumours in my remaining kidney and mets in lung and scapula. Kidney tumour missed for two years on scans so had metastasized by 2019 when they were found. In 2016 I had both breast and kidney cancer with nephrectomy and lumpectomy. I still take hormone blockers and get pains in joints and fatigue from them so never fully regained my health and strength. I can't seem to find much about people's personal experiences of this immunotherapy. I know it can be very successful so here's hoping but I feel daunted about everyday life on it. I'm 61 and still working, not a lot of hours anymore because of covid cutbacks but a physical job as a cleaner. Manager very understanding but I am conscientious and like to do a good job, never take time off sick or go in late etc. I already have some fatigue from last cancer and often struggle to get through the morning. I live alone so obviously no one to fetch me things, get medications etc. I don't drive. Hopefully planning to move next year when my daughter moves into a bigger house with accommodation for me there. This has been the plan for several years. I know everyone reacts differently but I really wonder how generally people feel on immunotherapy. Am I likely to be able to go to work at 8 in the morning? I have very bad ibs which effects my daily life regularly and I read that diarrhoea is often a side effect. I am already now on the loo sometimes 2 -3 hours a day! Just any advice or people who have been in a similar situation appreciated.
Hi autumnwalks and welcome to the Online Community. I just dropped in, I don't have the same cancer as you, and noticed no-one has replied just yet. I'm sure you'll get some advice soon. In the meantime you could ask a nurse in our Ask an Expert section about that particular combination of chemo, but you should allow two working days for replies from our expert team.
When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear. It's free to call on 0808 808 00 00 8am to 8pm, 7 days a week. Have a look to see what is available by Clicking here .
To find information covering diagnosis, treatments and pages covering most types of cancers can be found on our Online Information and Support Section.
Sending welcoming hugs, B xx
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"Never lose hope. Storms make people stronger and never last forever” - Roy T Bennett
Hello @autumwalks, Nice to meet you, I’ve been away from the site for a while, just checked back in, found that you’ve been asking about the Ax/Av combination. I’ll give a general reply about my own experience of it now, because presumably you’ve been given plenty of factual information about it already, and then if you have any specific questions give me a shout.
Well, I’m on Cycle 12, and there’s 2 infusions of Avelumab to a Cycle, so this afternoon’s visit to the chemo room must be my 24th. I don’t know if I have been unusually fortunate, but I can genuinely say that I’ve had very few problems from this cancer treatment. The main demands of the Avelumab immunotherapy seem to be more in terms of time and travel. I have an hour’s drive to and from the hospital and I’ll be in the chemo room for about two hours. That’s every fortnight. And on the intervening week, I go for blood tests (which take only a few minutes). Once you’re used to the chemo room routine, having your blood pressure taken, getting the cannula in place, having a saline drip before and after the main stuff, you can read a book, have a coffee, scroll through social media, that kind of thing. Oh, and for your first few sessions, you’ll probably have intravenous antihistamine too, which can make you feel VERY woozy for half an hour or so 
Other side effects that I’ve experienced have probably been more to do with the Axitinib tablets, or so I’m told. I have had the occasional flare up of sore mouth, and inflamed toes, and only recently some stomach cramps; but these have been mild, really, and haven’t lasted long. Perhaps more likely to occur when I feel run-down, stressed. But all in all, very manageable.
As for tiredness, yes, that is something to be aware of. My work is physical and I certainly can’t do full days any more. I can’t say how much is the demands of the treatment, how much being 3 years after major surgery, or just my age . I can only give the somewhat trite advice, listen to what your body wants and be kind to yourself. You’ll find yourself feeling utterly wiped out now and again but if your work and family circumstances allow you to grab some recovery time, you can find the level of daily activity that feels right for you.
None of us knows quite how we’ll react to these drugs, of course, and I remember how daunting it all seemed when I was due to start. I was sure I’d get almost every side effect, all at once, right from the start. But I didn’t. I have even joked to the consultant, “Are you sure you’re not just giving me sugar-water?” So, yes, one or two minor things to deal with, and a new routine to fit around, but otherwise normal life (or what passes for normal these days).
I’m waiting for the results of last week’s CT scan so I’m a little on edge, perhaps, but previous scans have been very encouraging, with good shrinkage of my largest mets and minor ones very much held in check. Not expecting this scan to be any different. So...
All the very best to you, fire questions at me if you want, and let us know how things go when you start.
- Mark
Hi autumnwalks Hope I’ve managed to type your screen name correctly this time, Teresa, don’t know what happened before
I’m at Addenbrookes. I could probably get infusions at my local hospital - which in fact I could walk to. But three years ago, when I went in for day surgery for bladder cancer and they discovered my kidney tumour, they said, “You’re going to need a bigger hospital!” and handed me over to Addenbrookes to deal with them both. So I’ve stayed with them for treatment since and I’m happy with that even if it does mean a fair bit of travelling.
- Mark
