my mum has been offered chemo on the ... - The Roy Castle Lu...
my mum has been offered chemo on the ET trial, does anyone have any knowledge or experience of this?
Hi FrancesP
My husband is on the ET trial. He had his first chemo at the end of June and has just finished his fourth. We are waiting to see if he is going to have 1 or 2 more chemos and then he will be on maintenance treatment - don't know what yet. He is doing well and when he had a scan after the 2nd chemo cycle we were told his tumour had shrunk by 28%. Yey!! It's scan time again next week so we are keeping our fingers crossed that we get a good result again.
I've not heard of anyone else on the ET trial so would be interested in hearing how it goes for your Mum if she decides to take it up. We are in Leicester, where are you?
For the first time since the treatment started we are actually going away for the weekend and hopefully having a 'normal' weekend away! We so need it!!!!
Good luck to your Mum and also you and your family. I really know how hard it is seeing someone you love so much have this horrible thing!
Keep me posted and let me know what your Mum decides to do and her progress.
Love and prayers
Jan
x
Hi Jan
Thanks for your response. I think mum will agree to the trial. We went to see her oncologist yesterday and he has offered her the trial.
It's been a rollercoaster few months for mum. She was diagnosed with stage 3b NSCLC in july. The scans picked up a tumour in her upper right lung so she had a thoracotomy on 8 August. Very sadly, when the surgeon opened her up, he found the tumour had spread to the lymph nodes and there were small seedlings over the whole lung. So the op was for nothing. She was really affected by this as you can imagine. However, she is now resigned to it and has good and bad days. She had a few horrible weeks caused by an upper tract urinary infection, being constantly sick and feeling generally awful. We all feel her aftercare has been terrible. I think if a urine test had been done a few days after the op, the infection might have been picked up as it's likely to have been caused by having the catheter in.My dad has had to call out doctors, different ones each time all giving varying advice! Anyway, she is now much better and the infection is going, so that's good.
Mum lives in Thetford which is in Norfolk, but her treatment will be in Bury st. Edmunds which is in Suffolk. Whether that's why her aftercare was bad, I don't know. Her oncologist at Bury was very good and spoke to me and my sister too.
It has been a horrible experience watching mum suffer like this and I am writing everything down (I find writing therapeutic!). On the good side, I am finding I am appreciating life more, not worrying about things eg. what the house looks like, what people think. I feel much closer to mum too, we've been talking loads, appreciating the small thing in life. She has some fantastic freinds and family, several grandchildren. My daughter keeps drawing her pictures!! I have also found out who my real friends are, people I don't even know that well offering to help with the kids for example during hospital visits (I know the road to Papworth like clockwork!)
I hope your husband gets on well with the treatment. It does seem to me from what I've read that on a trial you get monitored more closely which can only be a good thing.
I hope you have a fantastic weekend away and both treat yourselves to lovely food and drink because you so deserve it!! Have alovely time.
Keep in touch Jan and thanks again
Nicki xx
Hi Nicki
Just wondered whether your Mum decided to take the ET trial and how she's getting on?
Steve has finished his 6 chemo sessions now.
Hope it's going well.
Jan
Hi Jan
sorry for late reply.
Mum has just had her fourth chemo (of six), she is feeling really bad each time so they have decreased the dose by 25 %, no shrinkage yet. She looks very frail and has lost loads of weight. The dietician has prescribed energy drinks but she hates the taste! She is not so sick now but she ended up in hospital after her first chemo - how she survived I don't know, she is one strong woman (Irish so that might be it!!). How is your husband doing?
Regards Nicki x
Hi Nikki
I do hope your Mum is starting to feel better now and that you can all enjoy Christmas. Hopefully chemo won't clash with Christmas! Steve is really well at the moment and we had our second follow up appointment with the consultant on Monday who was delighted with his response to treatment and said he is in remission at the moment! What a fab Christmas present! We know things could change anytime - but hope it's later rather than sooner - and also know that as Steve has to go every month for x ray and appointment due to the trial, anything that does crop up will be caught early and treated quickly and keep things at bay - as it will with your Mum. Your Mum is a strong woman, like Steve is strong and he has kept very positive (more positive than me at times I'm afraid but I do try!) and that really does count. So all of you hang in there and you WILL get through it. Back in May none of us thought we'd be sharing Christmas together but here we are! Now we have a family wedding in February, our Ruby Wedding Anniversary on 21st April and a new grandchild due on 22nd April to look forward in 2013! Hope you have lots to look forward to - it helps.
Do take care and keep in touch.
We both hope you have a very good Christmas.
Love
Jan
x
Hi Nicki
Sorry to hear that your Mum's had such a rough time. I really hope she continues to feel better.
I know what you mean when you say it's a roller coaster! Like you, I am writing about everything that has happened since April and I have entitled it “The Biggest Roller Coaster in the World” because that's how it feels. Myself, Steve and our family want to get off and can't!! I'm also writing down the side effects of the chemotherapy as it's good to compare each cycle and it also jogs your memory for when you visit the consultant. Friends and family are everything at a time like this and I know our 2 Daughters and our 4 lovely little Grandchildren help to take our minds of off things and brighten things up.
We saw the consultant today and as the scan results weren't back he decided to give Steve a week off to give his body a bit of a break before his 5th chemo if it goes ahead. It will depend on the scan results and what he thinks is the best next step. We knew it would be 4 chemo sessions with a possibility of 5 or 6 and then maybe maintenance treatment. Hopefully next week we will get a better idea of what's ahead for us.
We had a wonderful weekend last weekend in Cromer and Sheringham (we love Norfolk!) and it did us the power of good. It really was like weekends of old! We are looking forward to lots more to follow once we have a bit more freedom after the chemo finishes.
Keep me posted about your Mum and I shall be interested to hear if she does decide to go on the trial what chemo combination she is on and how she gets on with it. Steve is on paclitaxel/pemetrexed.
You look after yourself as well as looking after your Mum! I know how hard it is to be the 'carer' of someone you love!
(I tried to inbox you this but not sure whether or not it got to you so thought I'd post it here in case you didn't.)
Love
Jan
xx
Hi Jan
I have only just read this, I hope you didn't think I had ignored it. It didnt seem to reach my email address.
Am really glad to hear your husband is doing well. You have so much to look forward to. Mum is having her fifth chemo on Xmas eve, then her last in january. She should get the results of her scan on Friday. It hadn't shrunk at her last scan but we are hopeful that the chemo will keep the tumour stable. She is feeling good today, I spoke to her earlier, she had even been Xmas shopping! She is very strong and seems to know her limits.
I am glad you had a good weekend in Norfolk - we live in Wymondham which is near Norwich, let me know when you are next in the area, you can pop in for a cuppa.
Anyway, I will keep you updated with her progress. Like you we are taking each day as it comes. I have kind of learnt to live with it if that makes sense.
Take care and have a lovely Christmas, it would be great to hear how you are all doing,
Nicki xx
Hi again
That was a quick reply.
Glad to hear that your Mum seems to be doing better. She must be feeling better if she has been Christmas shopping. Chemo on Christmas Eve's a bit of a nuisance but if she's anything like Steve was he was not too bad for the first couple of days and then it kicked in! So maybe Christmas day and Boxing day will be reasonable for you all. We do hope so. As you say, you learn to live with it (I don't know how, but we all do). We never thought we would at first, like you I expect, but you don't have a lot of choice - no good being miserable all the time!
That's a lovely offer of a cuppa and we'll keep you to it! We are hoping to go to Sheringham in the summer again - although with monthly appointments we feel that we can't plan too far ahead - although we have got a big family holiday in Devon booked in the summer which was booked up just before the balloon went up in April/May! So fingers crossed for us all and you and your family too.
We have friends in Taverham and Norwich.
Once more, have a fab Christmas.
Best wishes to you ALL.
Love
Jan
xx
H Nicki
Just wondered how your Mum is doing? Hope things are well. Has she finished her treatment?
Steve is doing very well so far and we are continuing to have fun and enjoy life.
Hope you enjoyed Christmas.
Are YOU doing ok?
I've now got to take my Mum (89) for an urgent appointment on Tues 5 Feb to the breast clinic! Fingers crossed for good news there now!
At least we have grandchild no. 5 to look forward to in April - due the day after our Ruby wedding!.
Take care and keep me posted when you have time.
Love
Jan
x
