Body pain

[Sjw9]

Hey lovely people I hope you are well

I’m having my 3rd round of chemo tomorrow for my lung disease and I’m dreading it. I’m struggling so badly at the moment with body pain especially in my legs. I’m also super tired and unmotivated…… I’m pushing myself to do things but it’s hard….. I still also feel a bit sick. I don’t feel like I’ve recovered from my last lot of chemo. Has anyone else struggled? I have hypersensitivity pneumonitis xx

[Annie31]

I've never had chemo so I'm probably not the best person to answer your query, but I would say, might it be an idea to get in touch with your oncologist/team and consult with them about tomorrow? I obviously don't know the protocol applied to each round of chemo, but I think I would also share your misgivings on whether I was well enough to resume at the moment! There are members on here that have had chemo and be able to advise you, but if it were me, I would be inclined to not wait and try to get the info I need from the 'horse's mouth'! Good luck to you!

[Sjw9 in reply to Annie31]

I will chat with them tomo but I’m guessing I willJust have to get on with it….. I am half way tomo thankfully xx

[Annie31 in reply to Sjw9]

All the very best for tomorrow!

[Sjw9 in reply to Annie31]

Thanks 😊 xx

[Hidden]

Be sure to tell them at the hospital how your are feeling. They do bloods first I believe and only if these are ok will they give you another dose.

I did refuse chemo myself but I do know how horrendous it can be.

Take good care of yourself and rest up as you need too,

Are you in touch with cancer support at the hospital? Certainly good to keep in touch with them while going through treatment and recovery. In my experience they are so good with diagnosed cancer patients.

Best wishes BK

[Sjw9 in reply to Hidden]

I don’t have cancer I have lung disease. I had my bloods last week and can only guess they were fine ready for tomo xxx

[peege]

I'm so sorry you're feeling so awful it must be so hard for you. I'm wondering if there's a Maggie's attached to you hospital, they were marvellous for my kids when their father was very poorly, a real haven of understandingandsupport. I'll be thinking about you tomorrow 🙏💐

[Sjw9 in reply to peege]

What’s a Maggie’s? A support group? Xx

[peege in reply to Sjw9]

Yes, Maggie was the lady who began them and they're based at many hospitals. We used the one in Fulham and a friend here in Gloucestershire uses one. Usually in separate buildings

[Sjw9 in reply to peege]

Never heard of them. Interesting thank you 😊 xx

[JerryMaren]

Hi soz to here ur feelin rubbish, I no chemo can be a real nastie thing 2 go thro, even if it ain’t for cancer. My mum did lodes of chemo at one time and I no she felt prety rubish too, and all I can say is take as much help as u can get, reach out 2 all the charitys or support groups u can find and most of all be gentel on urself. Don’t push urself 2 do stuff that ain’t importent, and get peple 2 help u do the stuff that is importent.

Good luck 4 tomoz… I hope it gets easier 4 u and I hope the chemo eases stuff 4 u x

[Sjw9 in reply to JerryMaren]

Thank you that’s really kind and helpful xx

[Hidden]

Hi. I have not had your condition but I have had chemo. The advice I received is not to push yourself to do things. Chemo is tough, if you feel tired rest. I used to hit a bump about 3 days after then gradually improve. We are all different but you are going through a lot so be kind to yourself. Wish you all the best.

[Sjw9 in reply to Hidden]

Thank you, I seem to be the first few days after. Sickness seems to hit pretty early on too. Just got to push though xx

[KJS15]

Hi Sjw9 I'm a HP person too who's also had the Cyclophosphamide infusions.

Definitely mention them to the team before your next cycle, tell them anything and everything that you feel is out if the norm, better to check and ask.

They do try and push you to tolerate the treatment as much as you are able to as it does seem to be showing benefits, but will stop it if it really is too much for you to bear

Also mention the nausea as there's good anti emetics out there so maybe you need a different brand.

Best wishes.

[Sjw9 in reply to KJS15]

Thank you how were you with the treatment? Did it help? Did your body hurt? Did you struggle with anything? Xx

[KJS15 in reply to Sjw9]

I had 9 cycles and struggled a bit with not sleeping for the first few nights as I've never had steroids so that kept me awake. But apart from the odd bit if tiredness and nausea I had no issues. Continued to work full time and showed a 10% increased in lung function. I've now moved on to mycophenolate as I'm too young to go onto maintenance infusions. Some others having the same treatment fared a bit worse, but mostly just tiredness and lethargy.

[Sjw9 in reply to KJS15]

That’s really good for you, it’s funny how different we all are. I don’t get on with Mycophenolate….. good luck with everything xx