Hello and Welcome to the online community

Well done posting that KT I have recently joined and thought it a bit quiet but not done anything, I stopped or postponed treatment just over a month ago due to concerns over being vulnerable to corona virus,  now of course really worried about being vulnerable to cancer, really am between the devil and the deep blue sea, really good  to see you are doing so well, mine progressed from rectal cancer to lymph nodes, I've had 12 cycles of folfiri and panitumumab and was 2 cycles into second regime in March when we stopped, plan is to wait until next scheduled scans in June to see what's happening,  still finding my way around site,  hope this finds you well

Hi , Thank you for replying, and yes I’m well. 

I have been struggling with that “between the devil and the deep blue sea” thought as well, for the day the decision needed to be made, the day I could change my mind and the day treatment would have been and on a few occasions since. It seems to have been a long three weeks for me. I thought I could park the worry until nearer the scan date, and then until the scan results, after all I’ve had nearly 5 years to practise that and I thought I was getting pretty good at it. What was getting in the way was the news being a reminder, my usual way of coping, which is walking in the countryside being out of bounds, and a self imposed thought that people wouldn’t understand or approve of my decision, as I don’t think I felt comfortable with it.

I needed a bit of time to process that I would feel the same way with either decision, that if there was no best decision there was no worst decision either, that it doesn’t matter what other people think, their decision would be right for them just as my decision on the day it was made was correct. If I start to feel ill or feel something changing then that decision can be reviewed, nurses contacted and an oncologist appointment made. If I worry again it’s going to be the same worry, nothing new has enter into the equation and worrying sucks. No one perfect and there will surely be days when I have an anxiety break out, in fact I had one last week

I have bought an exercise bike to replace my walks, I am trying to set 3 goals each day to get a bit of purpose into the coming days and weeks with a reward for achieving them, and trying to think of 3 positive things before going to sleep. There are some links within the coronavirus information to help with uncertainty and coping and we are not alone this time the whole country is out of whack and trying to cope with uncertainty we just might have a different or extra uncertainty, but there’s probably been no better time for people in general to understand.

I hope you’ve got your ways of coping, sorry for rambling on, I think I’m trying to say to myself that today everything is ok, I’ve got this and I’m coping, I may have a bit of a wobble sometime as it’s inevitable but it’s not today, and it’s ok to have a wobble. 

May any wobbles you have be short ones.

Hi again KT that is amazing and also comforting to see you have felt the same way as me about right/wrong decision etc and what will people think etc.

Grateful for your think through of all that, since my last post I have contacted hospital and had scans moved forward to may instead of June, I too am affected (is that the right word) in lymph nodes in both groins and abdomen, been a bit of soreness and swelling last couple of weeks hence concern and call to hospital. 

Immediately on changing scans my worries have shifted from cancer to covid if treatment starts again, like flicking a switch, nuts or what!

I too am missing the walking, still not sure if its good for lymph nodes (especially if i over do it) but definitely good for rest of body and mind and soul.

Wobbly days here too, and thanks for your words 

Hi , that flick of the switch moment is very understandable so I’m not agreeing with the nuts or what !  I hope that now a few days have past your feeling good that you have an earlier scan, and I hope your soreness and swelling is easing please let me know how you get on with your scan. 

I imagine your hospital will be a lot emptier than you can ever remember it when you go, and now that there are more test and protective equipment around I can imagine that the staff and you will feel safer and less anxious about seeing people.

Best wishes

Hi KT

Hope all is well with you, heres whats been going on with me, scans showed nodes enlarging in early May, 3 weeks for consultation after scan then 3 weeks for chemo slot so started folfiri and panitumumab(targeted treatment for advanced bowel cancer) on 15th June. 

Had two treatments now and once again having miserable time with side effects of panitumumab, rash nosebleeds etc. Just came on here to see if anyone had any tips on dealing with it, have read main MacMillan blurb but not much there.

I may see if I can alternative with each treatment as its really affecting my toleration of treatment as a whole.

Still being careful and shielding here have had some nice remote walks when off treatment 

Once again hope all is well with you

Hi , good to hear from you again. You and me both took a break from treatment due to Covid and both of us needed a scan brought forward. My gap til July faltered when I felt a lump in my groin, and called my team they organised a CT scan in May which was reported on as stable my consultant asked for a review and the review saw 2 more nodes showing as enlarged and a lesion on my liver. The restarted treatment 2 weeks later and arranged an MRI for one week later, the MRI has come back nothing of concern and one week after restarting my lump which felt like 4cms, (but the scan had shown as 2cms) now feels like under 2cms. So I’m feeling confident Pembro is working again for me. I have a CT planned and results due before my next treatment in 3 weeks. It was a bit concerning thinking that I may have to change treatment if the MRI had confirmed further mets, so a big relief to be ok, and I’m feeling CT is just to confirm all is ok. So that was the long way of saying yes I’m well, no side effects other than a bit of tiredness in the first week for me.

I’m sorry to hear you are suffering with side effects, I’ve had a rash before which my team when I rang them told me to take antihistamine like you would for hayfever, and use aqueous cream (e45 or similar). I’ve never had nose bleeds, I think must be concerning for you, have you had that side effect before? Have your team recommended anything for it? I wonder if anyone in the bowel group can help with their experience. The Macmillan support line or the ask a nurse will give help I’m sure as well. 

Shielding, yes when June’s change came I’ve been for a few remote walks, I have to really think where to go though as some paths are too narrow if we do meet people for me to feel comfortable ( a runner nearly bumped into me that first day). I’m not feeling very confident about shielding ending on 1/8 and I can imagine that I will still shop on line, that seems so much safer for the NHS staff I have to see when I receive treatment. Today with all the talk of pubs and hairdressers reopening for those not shielding to use has actually made me a bit tearful today, very illogical and unusual for me, I hope the news reports it’s been uneventful tomorrow and in 2 weeks time.

I suppose I should consider booking an appointment for my hair for after 1/8 as with reduced capacity I can imagine places will be booking well ahead, I usually go when it’s quiet, anyway and now I can imagine there may not be a time when it’s as quiet as it was. 

I hope someone else has the experience you need and will post or just pop in to say hello. I hope things aren’t too stressful for you at the moment.

Hello again KT

Similar circumstances to you in could actually feel node enlarged(somewhere near 4cms) near surface in left groin and in my case CT scan showed new activity in new nodes somewhere deeper in RH abdomen/groin.

Glad MRI was reassuring for you, you seem to have a good team working with you. 

The rash i have apparently  is a given with panitumumab unfortunately but does vary in intensity and requires 'grading'.  I have been down the full 'pathway' in trying to manage it, daily doxycycline,  emolient cream, hydrocortisone cream and eventually steroids during last 12 cycles last year, no real relief especially at end of regime.

Good advice i will try bowel cancer group see if anyone has had similar difficulties,  Im going to suggest alternating pan treatment every other 2 week conventional chemo treatment 

My team keeps changing , i need someone who is familiar with me rather than a 5 minute glance at notes i feel, unfortunately my MacMillan specialist cancer nurse retired in February,  she really was the glue.

I have been meaning to ring a nurse here as you suggest too.

I feel vulnerable when out too and with you on avoiding narrow paths etc (why are people out at 5.30am anyway?)

It will be interesting to see what happens after relaxation of rules etc today, we are a bit behind in Wales which i dont mind, im still going to be very careful whatever.

Hope you get youre hair sorted my wife has appointment sorted for August first one after theyve been closed Sun and Mon.

I need to see optician but theyre a bit vague re shielding 

Oops dinner ready

Catch up soon I hope