Treatment while on immunosuppression

To all these lovely ladies your support is both amazing,necessary and we are all more than grateful for everything you read and reply to. So as no-one could answer my questions about immunosuppression (no offence to those who did reply!) I thought the experience I am going through would help others either going through it or just as an idea what to expect. I have just finished my first week on radiotherapy! Yay! I am not allowed chemotherapy as this would increase the risks and side effects I’ve been told by 30% so it’s not worth the risk. First day of radiotherapy was ok but the journey there and back knocked me out more than the treatment. By the 2nd day I wasn’t so scared I knew what to expect and the staff at the hospital I’m having treatment are all wonderful. So for 15 minutes a day I am getting rid of this cancer and making sure it won’t be back. But again I slept for quite a few hours as I was so tired. Awake on day 3 with a smile knowing I CAN beat this it’s easy. What I didn’t anticipate was the side effects hitting me all at once first was the diarrhoea I won’t go into details it says it all! So I told my team and they said it’s impossible side effects don’t start until after week 2. However there are exceptions to the rule and after week 1 I have diarrhoea,lack of appetite,hot flushes as I’m now in early menopause and burns when I pee(sorry tmi!) this is all because I have no white cells to kill in the procedure so it gets direct to where it needs to be, and therefore I get all the side effects after week one. The hot flashes I must admit feel awful and this has interrupted my sleeping as both the treatment and early menopause does anyway! But one minute you are so cold and wrapped in your duvet with your pj’s on. Then your so hot you go to the extreme of kicking off the duvet and your pj’s and sometimes my sheet lol! Day four and I get a call saying I have to come in early for blood transfusions. 7am in the morning I was up at the hospital for transfusions and I was so early nowhere is open. By 8:15 I found the Secretary and said I will be back in 20mins as radiotherapy are quite flexible and agreed to fit me in before my transfusions. Special socks on I walk into the room and lay down waiting for the nurses to move me where I need to be. And tbh I’m still having trouble not moving to help them! And then done. Go back to the ward where I waited for a bit and was told I’m going to have 3 units of blood so will take 5-6 hours. This dragged on I had books to read. Games and music when I got bored or tired of reading it. But it didn’t help. By the time I got home I hadn’t noticed that I had almost no fluid and only 2 gingernut biscuits as that was all the hospital provided,and I could truly feel the acid jumping up and down in my tummy. I also could feel something like knots in my stomach and the sensation that they were swelling. This was another side effect. And in my Dr’s words I have ticked all the boxes to what he had expected to happen with me. Now on my weekend off from treatment I would like everyone to know… As much as I’m complaining it’s not something to worry about. Just wanted to get the side effects of those on immunosuppression and who are worried. And those on their 2nd week and getting the side effects. I know what you’re going through just like so many others
Thank-you for reading

Hi Harlee :-)

Thanks so much for posting this, it makes really interesting reading for me and hopefully really useful reading for others. I am so sorry to hear that you are getting your first hot flushes all at the same time! At least I had just begun menopause naturally when I was diagnosed so I'd had a little bit of getting used to those first. Horrible aren't they! After five years I am now either very used to them or they are less severe than they were. You'll get used to dressing in thin layers like an onion :-)

Be lucky :-)

Hey tivoli!

I put this up as things like this will help others if on immunosuppression. But it also does make interesting reading. Hope you weren't insulted when I said couldn't get an answer,as you were the first to jump in and research and answer my question. Like I've learnt from this forum the more we share the more we know and that knowledge is purely through experience and might even stop others googling. Thank-you for replying and thank-you to both Lolli and yourself as you were the ones who went into detail and explained and kept me from Google. Fingers crossed that week two goes quick!

I can never thank you enough tivoli as you have put up with moaning whingeing crying and everything as has everyone who read and replied. Thanks to you all I feel I am in a stronger place now all except sleeping alot lol. I just can't stop!

So much gratitude hugs and kisses 


Insulted? Me? Never!

I agree with you that what's great about putting up stuff like this is that it makes Jo's an even more all-round resource, which will help to keep women away from Google :-)

Hope you sail through the rest of your treatment without too much bother.

Be lucky :-)

Hi there lady!

great that you are posting as it will help someone! Sorry you are having a quick start to the side effects but you will get through it and be a champion on this side! 

Get yourself a peri bottle and fill it with warm water and a teaspoon of baking soda. Spray while you are going pee as it will neutralize the urine and stop the burning sensation. It will also help to have siltz baths a few times a day. There is also many creams that can help in being uncomfortable down there and protect your skin and lady parts. Ask to see the skin care specialist at your clinic as she will have many tricks about more then just skin. Drink as much as you possibly can hold in your bladder at least 15 minutes before radio. This will help keep infection at bay and also prevent damage. 

Im routing for you all the way!!!!

Awww you girls! 

Having aparticularly bad week this week and put on new meds that make me sleep for 10hours. I'm glad if I can just help one person with the same questions I had as Google is far from our friend. Have stopped taking the pain med that made me sleep but have hit the wall where I can't stop crying and at times feel like not going for treatment...(I have no intentions of stopping just the thoughts I feel)

And so Lolli and tivoli as you are obviously angels of wisdom is this normal? And I mean that with all my heart you've been there since my first post and have helped me through hard times good times well let's face it everything so far. Along with many other wonderful ladies. I wish there was so much more to advertise you than just a card in a macmillan book. I found you by accident and so glad I did!  I am rooting for myself as well but can't get through this crying phase. I don't even know why I'm crying!

All you ladies are an absolute godsend 

Love you all loads big Christmas hugs and kisses to all!


I think the crying is perfectly normal. after all, this is a BIG deal you are going through. 

Last year this time I hadn't started my treatment but I was scared and worried and every other negative emotion that you can think of. if someone would've told me that fast forward a year I would be back to work, as busy as ever, feeling well, cancer free - I wouldn't have believed them.

This is a short period in your life. dose yourself up with pain med if you need them, sleep when you need, for as long as you need and eat what you want when you want. Get people to wait on you hand and foot if that's what you need. This will be over and done with before you know it and you'll be back up and running. in the meantime ,  enjoy daytime TV x x

Lots of love to you x 

Hi Harlee :-)

I can't remember now how tearful I was or wasn't but I expect I had some melt-downs. This treatment is exhausting in itself, the diarrhoea wears you down, the hot flushes wear you down, the travelling is exhausting, of course you break down in tears every so often. Come to think of it, I'm pretty sure I was forever breaking down in tears with my first hot flushes even if I wasn't during the chemo-rads. It really is a huge lot to be going through all at once. If I could take your hot flushes from you and let you only deal with the treatment I would do just that.


Be lucky :-)

Hi honey

its totally normal to cry, yell or whatever. It's all so overwhelming so don't feel bad. Buy yourself something nice when you feel like going out you deserve it. Every week I bought something new to celebrate another week of treatment done. It helped so much to have small goals not huge ones. 

Also buy yourself some sage tea as it will help with the hot flashes. 

You will get there we are all routing for you!!!!

big hugs to you!

Awww you gals!

I seriously don't know what to say just reading all your messages and knowing that it's normal brings me to tears! Everything is so exhausting and as much as I listened to you all (and trust me you have all helped me more than you can ever know!) I still somehow managed to convince myself I could beat it take on the world Christmas and everyday tasks that just honestly can't be done. I broke down because ice finally realised I'm not supergirl or wonder woman I can't truly do everything. My mum's been helping me alot more than I would like to admit to when it comes to childcare. I decided a few weeks back that I can't have my Lil girl around when feeling that ill. Don't want her to see me like this. Thankfully when I'm having a good few hours I only live 5 doors away so still can play. I miss her like crazy but it needs to be done. I have now been given fortisips as have lost quite a bit during these two weeks and my pain meds upped to the heavy stuff (which truly scares me) unfortunately I tried too much too soon regarding food and doubled my intake today including the fortisip calories and everything ended up coming back up by the end of the evening. Got to start changing Lil by Lil not extremes...however although it's been stopped medically I have stopped bleeding over the weekend as my Dr also gave me Transexamic acid,what a godsend of a drug that is! My bleeding had got to the stage where I had to literally use my phone to get help as was leaking more than before treatment and made a mess just getting on and off the seat. And now I don't even have to carry spares now! Anyway enough cheering and moaning I wish all you wonderful ladies a very merry Christmas I intend to have fun no matter my plan!

Love you all you women are truly an inspiration and a fountain of information everything people like me look for when going through this!

I am in awe with all of you.i was numb to the statistics and the knowledge was unbelievably low after what I know now. This website is a brilliant thing and women as amazing as you should shout about it! I worship all of you whether going through or finished whatever stage I honestly didn't understand the strength needed mentally and physically for this. You women to me are just.....well there are truly no words for you! And we need more with strength like yours to make others understand. I know I will forever be eternally grateful for anything and everything you all get me through.

I hope you all accept this as your Christmas card because you all deserve to know how truly brilliant you are!

Merry Christmas to all of you amazing women and a happy new year! 

HarleeKwin xxx