Hey all, feeling a bit run down and fed up at the mo and not sure if it’s a bit of hayfever or the nasty Filgastrim. I seem to get upset tum each time but also have a constant dripping nose which has also bled on and off. I get a bit achy, tired and have a stupid dry cough. I don’t usually suffer bad from hayfever but wonder due to all these drugs and chemo is it worse this year? Am loathe to take anti histamines. Been a crap couple of weeks really. Finished my 4 EC last week (yay!) and thought I had 2 weeks break so was planning a little weekend to Wales to chill but nope, the oncologist ripped my head off and said she strongly advised against “going on holiday” and I was starting Pax and Phesgo next week! I argued with her I had been told it would be 2 weeks break to give my body a rest but frankly she didn’t give one! They wouldn’t change my chemo day either due to the fact I’m coldcapping. Guilt tripped into staying on Tues because they have to juggle patients on their lists who coldcap - doesn’t matter they only have 1 medium cap in the whole place anyway and put a large cap on me last week instead which was ridiculous, it hung over my forehead! They also expect me to go for blood tests every Sat morning for 12 sodding weeks in central London which I am refusing. It takes me an hour to get there on the tube, costs £8, and is packed full of people, it causes me so much anxiety, I hate it. I am seeing the oncologist this week so will ask or demand to go somewhere local on a Fri instead. I had an ultrasound last week which was pretty useless, they couldn’t tell if the lump had reduced or not and asked what did I think - er I’m not the dr!! Finally to top it all my MRI scheduled for 12.15 today was cancelled at 9am this morning, no reason given!
Hello
I’m sorry you’re having such a hard time of it.
I don’t know about the hayfever - maybe it is worse because you are run down from treatment and your body isn’t dealing with it so well???
Completely understand your frustration re the holiday. I was told I shouldn’t stay away anywhere more than 2 hours from my hospital while I was on IV chemo in case I had an emergency as it was preferable to be treated at your own hospital where they could fast track you through as one of their cancer patients whatever the emergency was.
I started on phesgo at the same time as IV chemo and once the IV chemo was done they said it was fine to go further afield but not abroad.
Can you speak to your GP about the need for a break and feeling rushed and pressured? Mine has been really good at supporting me and writing to my oncology team when she thought I needed a break too.
I do hope it can be sorted for you.
Sending you a big hug x
I started Docetaxal and phesgo 3 weeks ago (just haf 2nd dose today) i had 3 ec previously. I do feel like i have hay fever but not sure if the watery eyes are from eyeladhes falling. The runny nose is extreme, its like someone’s turned a tap on so i constantly had a wet face from these 2. I started Antihistamines for rashes and tjis dose seem to have eased the hayfever symptoms.
I’m sorry you are having a rough time. I suffer with allergies and hayfever and didn’t notice that much difference as my chemo started in September and I was on steroids which also help.
I think your oncology team probably want you to get on with your treatment. Many people have breaks due to illness, low blood results or allergy/ reaction to chemo. Maybe you could talk to your oncology nurse specialist or call the BCN nurses on 0808 800 6000 to discuss your situation.
I also cold capped and had lots of issues regarding the booking team as they needed a much longer slot to allow for the cap time. In my centre that had set days for cold capping and there wasn’t any flexibility to change. Even when I was ill, they struggled to book me back in.
Gosh that’s a lot of time and money to go for blood tests, is there an option to have your bloods done by a district nurse, that what I had as my cancer centre was 30 miles away and I had travel weekly for chemo and it was prohibitive to travel for bloods weekly as well. Another option is if your GP could do bloods as long as you have the blood form from your hospital.
Hopefully you will get more information from the ultrasound at your next appointment, from my own experience I found they were reluctant to say anything until it had been discussed in a MDT meeting. I suppose the MRI could have been cancelled due to staff sickness or the machine not working especially at such short notice, let’s hope you have a new appointment soon.
The sore nose could be from Docetaxel as you loose your nose hair the same with your eyes. You can get eye drops or gel to help with eyes, I wear glasses that helped a bit. With the nose many have suggested Vaseline helps. I would mention this to your team and see if they can help.
Take care.
I have no contact with my gp, never met him/her! They get copied into all my letters but other than a text with MacMillan numbers they are hands off. I do feel I don’t know where to turn sometimes as I asked questions of my oncologist who referred me back to the chemo suite who then contacted oncology again! I am just hoping I see the nice oncologist this week as you see someone different each time.
Snap my nose has been a tap from the start. I have an annoying dry cough too which is worse at night which is why I thought maybe hayfever. One nostril bleeds probably from all the blowing and wiping. I have hopefully now finished Filgistrim so will see what the next round of chemo brings.
I finished Filgistrim yesterday so hope to feel better soon as I think it causes me lots of issues, upset tum, cough etc. I get they don’t want me going abroad but it was 3 days in Wales and I had been even drawn a diagram by my breast nurse showing all the treatments and a clear 2 week break. I had circled this as reaching a point in my treatment and one where I could just pause before starting Paclitaxel and Phesgo but no, it’s 1 week and bang straight back to treatment. It just seems so brutal. The blood tests seem to be purely so they can go straight to the lab which is at that hospital on Sat ready for Tues. I am going to refuse though as I just cannot do that 12 weeks on the trot. I did think about asking if my gp surgery can do it instead. I am not giving in on this bit for sure! No idea what happened with the MRI, it had been booked for months by my surgeon and I even got a reminder Sat for it so yes, maybe it was sickness or an emergency or something. Just annoying as I had geared myself up for it all weekend, really didn’t like the laying down MRI experience.
A district nurse can come to your home or you can go to their workplace, mine was at a local community hospital where my GP was based. Always worth asking.
Like you I had very little to do with my GP during chemo apart from my helpline advising me to go to them to be checked for thrush, temperature etc which all needed medication. Lucky for me one of the GP’s had done some of their training in oncology.
Take care.