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Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Mon Mar 06, 2017 10:44 am

Hello again...just a couple of questions that I have after reading through a lot of posts. I'm certain that somebody will be able to answer them. Why do people have different types of chemo? I never realised there were so many variants. Are some more aggressive than others? What are the markers that are often mentioned? Are they only relevant when the patient is on chemo? Thanks in advance Vee x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Hello

Postby Elaine123 » Mon Mar 06, 2017 11:51 am

Hi there Veebee I am unsure about the different types of chemo. Pete is on Abraxane and Gemcitibane three weeks on and one week off. I don't know if this can be considered an aggressive therapy but he has had quite a lot of side effects from it and also one episode of neutropenic sepsis. He starts his third cycle this Thursday and then in a months time he gets a ct scan. I know others are on folfirnex but that seems to be given to more physically fi younger people. Some here will be able to enlighten you further to this question. I hope Allen had a good weekend. Hugs
Elaine
X

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Mon Mar 06, 2017 6:22 pm

Thanks Elaine....because Allan's just on palliative we don't have indications of whether the disease is progressing or not. But,there seems to be so much worry waiting for blood or scan results for patients on chemo. Worry all round. Take care xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Hello

Postby Veema » Mon Mar 06, 2017 9:28 pm

I think it depends on many things...I believe folfirinox was originally a second line treatment for when there was spread to other parts of the body, but I think it also depends on where you are in the country and how fit you are (folfirinox is supposed to be a particularly gruelling regime)...Nige got folfirinox from the word go...and it worked for a while and he tolerated it well...some oncologists go for gemcap, some just gemcitibine (sp?), if you're lucky you can get abraxane.

You're right...bloods and scan results always put me on edge...I found a printout of Nige's CA19 numbers the other day in the back of my diary. CA19 blood markers are an indication (and only an indication) on the activity of the tumour...if the tumour is active, the numbers tend to trend upwards, a downward trend often indicates that the tumour is not active or becoming less so...but they can't be relied upon by themselves.

Hope that helps

Vx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Mon Mar 06, 2017 10:16 pm

Hi Veema....yes, it does help thank you. Vee xx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Hello

Postby Justamo » Thu Mar 16, 2017 9:19 pm

Hello Vee,
I've just read your post on Elaine's thread, and you sound so weary. I know what you mean about people asking how Allan is all the time. It does get wearing, especially if there isn't any particularly good news to share. And then people ask brightly, "And what about YOU. How are you COPING ?" What do they think you are going to say ? "I'm just great thanks, having a ball". And then they say, "If there's anything I can do, just let me know". If you rang them up and asked them to finish off the ironing they would vanish off the face of the earth.

Some dear friends of mine were shocked to discover that their 13-year old daughter had cancer of the bone in her leg. They had to spend a lot of time 150 miles away from home at the specialist cancer centre, and they set up a special e-mail address to share all the weekly news. (Incidentally, that child is now a 28-year old woman, living in France, and holds a very senior teaching post. There are some happy endings). The weekly e-mails saved a lot of precious home time answering the phone, and meant that they could devote some quality time to their other daughter, aged 11 at the time.

I don't think that a BCC e-mail is the answer to our 'kind enquiry' problem, it's just another little burden to bear. Along with trying to think of tempting meals, gaining all the weight your patient has lost, and getting sick of washing and ironing pyjamas. But I daresay that Marmalade, Proud Wife and Veema would each give their right arm to have to wash and iron pyjamas again. . . .

This forum certainly keeps you grounded, that's for sure. Anyway, Veebee, what I meant to say was just have a good old moan on here any time you want. Nobody will judge you, everybody understands. We all have empathy pouring out of our pores, if you know what I mean.

So just keep on keeping on. And if you'd like to finish my ironing, let me know and I'll get it couriered to you.
Love, Mo

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Hello

Postby Elaine123 » Fri Mar 17, 2017 9:07 am

Hi Vee I have this picture now of a large box of Mo's ironing arriving on your doorstep lol. I know exactly what you mean about retelling the tale to everyone that asks , I know they mean well but I long for someone just to stop me and say something normal like " how are you this week you are looking well " instead of the first words being " I got quite a shock when I seen Pete this week " arrgghh.
How is Allan this week .....omg now I'm doing it. Pretend I didn't say that , how are YOU this week. I am off this morning for my mammogram at the mobile breast screening unit and it's not one of the things I look forward to. I always find it very uncomfortable and make squirming noises which upsets the nurse somewhat. However it's a necessity and must be done. I really hope you are both having a good week. Hugs
Elaine
X

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Fri Mar 17, 2017 12:55 pm

I've been framing messen, as we say in the North, and am in a better frame of mind. So, thanks, Mo and Elaine, and please don't send the ironing! Actually, we've had a good few days, Allan was hardly eating anything at the beginning of the week and today he's had porridge, a beef sandwich and wants sausage and mash for tea. He only has small portions but the change is remarkable. We have a hospital bed in the dining room because of the pressure sore...The DN says it's not getting worse and I believe he's better for the resting. He's far more comfortable than shuffling about on the Repose cushion. Mammograms are an uncomfortable nuisance but are necessary. ..I had a cancerous lump in 2011 picked up by a routine mammogram. If only PC was as easy to spot as a breast lump. I'm going to clean and oil my sewing machine this afternoon while the old man's watching Cheltenham. My sewing has taken a back seat these past months. Have a good day. Vee xxx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Tue Apr 18, 2017 11:27 am

Hello again....because of the sad news on the forum in the past week I felt uneasy posting about our situation but I know you'll understand , so.......Allan has gained 6lbs in weight and we're fixating on this as it's the first gain since he began to be ill over a year ago. He's lost over 5 stone so this gain has lifted both our spirits. His appetite continues to be reasonably good and his mobility is better and his pressure sore is almost healed. I hardly dare hope for more. My thoughts are with Elaine and Ruthus' family but I wanted to share our little bit of good news.


Love Vee xxx

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Hello

Postby Wife&Mum » Tue Apr 18, 2017 12:46 pm

Vee, your little bit of good news is a real tonic and I'm so pleased you decided to post.

I hope Allan continues in the same vein for a very long time to come.

Love and best wishes
W&M xx

Sandiemac
Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: Hello

Postby Sandiemac » Tue Apr 18, 2017 6:41 pm

So glad to hear this, Vee. It's nice to have the other side of the coin at a time like this.

Sandie x

Marmalade

Re: Hello

Postby Marmalade » Tue Apr 18, 2017 7:29 pm

Super news Veebee,

Please don't ever feel you can't post because another is suffering, you and Alan and your story are every bit as important and dear to us. Posting on here is a great release and comfort to many and it is really important that you feel you can post at any time. When I lost Louis it did not stop me rejoicing in other peoples good news because I knew what a difference it makes.

How splendid that you are both feeling buoyed up by the weight gain, these are the things we hang on to and take pleasure in and no one would deny you that. Elaine calls them diamond days and they are.

Hope you have a lovely evening

Marmalade xx

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Sat Apr 29, 2017 10:57 am

Hello again.....since my last post things here are on the downward slope again. Allan hasn't eaten properly all this week...just a spoonful or two of porridge or a yogurt but we've been here before and then his appetite has rallied again. I seem to place a lot of emphasis on eating ! He's been very breathless after walking to the bathroom but this goes away when he's rested for a few minutes....no stairs to climb though, thank goodness. He's sleeping for much of the day but does sit up for an hour or two in between. The doctor came out yesterday and gave him a good examination and she doesn't think he has fluid on his lungs as he's not coughing anything up. The nurse offered him a zimmer and he refused it but I'm trying to get him to change his mind...not easy, I can tell you. When he's laid down he looks terrible but when he sits up his colour improves....has anybody else noticed this in their patient? Am I over analysing? 😐

I'm going out today with 3 old school friends for a bite to eat and a catch up. One of them lives in London and is up North for a meeting so we don't often get together....hard to believe that we've all been friends since we were eleven, so, that's 57 years....a long time. A couple of Allan's fishing friends will be coming from Lincolnshire to sort out the rest of his fishing tackle in the garage so he won't be alone for too long. I'm so looking forward to getting out for a few hours.

Hope everyone has as good a weekend as you can and love to all.


Vee xxx
Last edited by Veebee on Sat Apr 29, 2017 10:59 am, edited 1 time in total.

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Hello

Postby Veebee » Sat Apr 29, 2017 10:57 am

Wow, that's a super sized emoji.....

Marmalade

Re: Hello

Postby Marmalade » Mon May 01, 2017 9:53 am

Dear Veebee,

Sorry that Allan has not been too well, sadly this is why we call it the roller coaster, one can never tell which way things will go next.

I understand the zimmer thing as Louis didn't want his but we just explained that it was a way of him having a bit of independence and he did use it for a day or two. Eventually he became too weak to even walk the couple of paces to the loo. Allan is a poorly chap and muscle wastage, weakness and colour changes are all part of this horrible disease. I wish I could explain the rallies and the downturns but I can't, they seemed to have no logic to me.

It's hard to judge where Allan is on his journey and of course they all go through loss of appetite and then pick up again but eventually they all stop wanting to eat and it can actually pain them to do so. Your doctor will be the best judge of this. My rule was if he wants to eat feed him and if he doesn't, let him be. This can be very hard on the carers because feeding them is something we can do and feel as if we are helping. Increased sleeping can be due to increasing fatigue, the body is too weak to keep everything running so bit by bit things close down and the body conserves energy. It can equally be the effect of pain killing drugs or both things together.

If you have not already done so have a chat with your doctor or the palliative care team about what you might expect as things progress. Allan may rally and have another good up swing but knowing what to expect can give you a bit of confidence to manage things.

We kept flavoured ice cubes in the freezer to crush when Louis found swallowing difficult and sometimes, little tiny squares of food left near him tempted him to eat.

I do hope he has picked up a bit and all of this is irrelevant but if I can be of any support please ask the nurses to put you in touch with me.

Love to you both,

Marmalade xx