endometria cancer/ immunotherapy

Hi Hanna

Am sorry to hear that you are having pains in your hip and leg due to the spread to your sacrum. I hope that the acupuncture will help. It does sound worth a try. 

Fatigue can be really hard to manage. I will pop a link to the Macmillan booklet and it have some good ideas that may help.

Coping with fatigue (tiredness) | Macmillan Cancer Support

Jane

Thanks Jane, I will read it through

Hi Hanna, so sorry to hear your news sending lots of hugs and support.  It is so much harder coping with the side effects of our treatment when it doesn’t seem to be working.  I’m on a two week break as my body wasn’t coping, hopefully I’ll be sufficiently recovered to start again next week.  The break is giving my body chance to recover, blood pressure and thyroid responding well to medication, mouth and throat virtually back to normal - which means I’m able to eat and drink again, nausea and tiredness decreased, joint & muscle pain reduced so I’m feeling much more myself at the moment.  Hopefully the tests next week will show my kidney function is recovering sufficiently too to restart.

I’m seriously impressed you get out every day for a walk etc.  some days I wasn’t getting out of bed as I was so tired so don’t beat yourself up, listen to your body.  I know how difficult it is to want to do stuff but equally have no energy to even think about it but try not to get too frustrated.  We’re moving house and it drives me potty that I have a long list of “stuff to sort” but normally no energy to sort it.  I’m driving everyone mad this week while I feeling better by getting them to make decisions and tackle jobs that need doing while I have the energy to wield the whip :) 

Mary xx

Hello Mary, yes I think a break from the medication is a good thing. I will have one shortly I hope as I have to have back tooth out and you have to stop the tablets a week before, my dentist wouldn't do it because of my medical situation and referred me to hospital so just waiting for an appointment. Also I am waiting for acupuncture for the pain in my hip and left leg as the orthopedic doctor didn't think I could have more radiotherapy at the moment. I found waiting for the appointments just adding to the misery! 

Yes I force myself to do things but anything involving bending is painful, walking is reasonably ok but it isn't the same anymore. Yesterday we went out to eat, I couldn't swallow anything! brought the dinner home with me. I just didn't feel like eating at all. Had something later.

Are you downsizing? Lucky you! we should have done it years ago, now I just can't be bothered going through the rubbish which we have plenty. The house is too big for the two of us anyway, ideally a bungalow would be best for us. Maybe when I feel better will think again. My review with the oncologist is on the 12 June, another long wait.

I am glad that you are feeling better, hopefully when you go back on the tablets the side effects won't be as bad.

Keep well and will be in touch

Hanna xxx

Hello Hanna, just checking in with you to see how you’re doing?  I posted an update on the other thread and then realised you might not see it :). I restarted my treatment yesterday so we’ll see how it goes, my daily chemo tablet has been reduced from 20mg to 14mg so I’m hoping this will help with the side effects.  

How did you get on with the acupuncture?

take care

Mary

hello Mary, so niece to hear from you I am a bit confused re my treatment - i was due an infusion and anther 3 wks supply of the Lenvina tablets but a nurse rang and said that my treatment will be postponed untill I see the doctor on the 12th. I wasn't prescribed any more tablets by  the nurse. I Was hoping that i will less tire but it is still the same on top of hip pain. My first acupuncture is next week. I will post an update, shortly

Keep well

hanna

Hello, I spoke to the consultant today and it was not good news as the immunotherapy/chemo treatment has not worked, my scan showed the secondary tumours in my liver have increased significantly.  So although I have tolerated the treatment much better since they reduced the chemo tablet dose they are stopping the treatment.  They have offered to start me back on the chemo I was on last year only weekly instead of three weekly.  I may also be eligible for a trial.  It’s thrown me quite a bit - so I asked for a face to face appt which I’ll have in a couple of weeks and they are sending me some more info.  I haven’t told the family yet and am not looking forward to that, especially as I cannot remember what he told me!  I really felt rough the first week after chemo last year so the thought of having weekly treatment is worrying.