A forum to focus on treatment related issues and side effects from treatment

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PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Welcome to this new forum

Postby PCUK Nurse Jeni » Thu Apr 14, 2011 11:36 am

Welcome to this new forum focused on chemotherapy and radiotherapy treatment. We hope this will be a place where you can discuss your experience of these treatments.

lisaH
Posts: 8
Joined: Wed Apr 04, 2012 12:26 pm

Re: Welcome to this new forum

Postby lisaH » Thu Apr 05, 2012 3:31 pm

Thank you.
Early days yet for my mum who was diagnosed a few weeks ago. She's waiting for her blood count before she can start the chemo. She's been prescribed the gemcitibine and then an oral drug the week after (can't remember it's name, it begins with a 'c') and then gemcitibine again the third week. We didn't get a lot out of the consultant and haven't met with the chemo nurses yet so maybe I'm jumping the gun a bit. Mum was told it would be 6 months if she refused treatment (thankfully she hasn't) but they cannot see the tumor, they got the info from the cells and it is inoperable. I find this quite shocking.
My main concern is the fact that she will be having a large dose for 3 months and how much care she will need.
I work for a Carer's Organisation so they will let me have my annual leave at short notice but I have to plan it for when she is most poorly.
I have asked for 2 days after every treatment and of course will go after work and stay overnight when needed. Will this be enough? I also worry if she gets ill in the night.
Does anyone have any advice please?
I have read some blogs from some lovely and positive people and wish you all the best.
Lisa

louiepc
Posts: 238
Joined: Wed Aug 10, 2011 10:38 pm

Re: Welcome to this new forum

Postby louiepc » Thu Apr 05, 2012 5:40 pm

Hi Lisa,

Welcome to the site, I'm very sorry to hear about your mum.

On the positive side, great news that she can start chemo. Every person is different with the side effects, some people have been very fortunate and had none and felt loads better, put on weight, and have enjoyed life. Others, my mum included, get very tired and can sleep for days. Sickness is also a side effect, you can ask for anti sickness though.

I think you will literally have to wait and see how your mum reacts, I know that's not much help. One thing I would say is monitor your mums temp, a high temp 38 plus is not good, it could be a sign of infection, and you would need to contact yr chemo ward.

I hope things go well for your mum.

Take care louie x

rachelqt
Posts: 175
Joined: Tue Sep 20, 2011 9:18 am

Re: Welcome to this new forum

Postby rachelqt » Thu Apr 05, 2012 9:58 pm

Hi Lisa
Sorry to read about your mum. Gosh that is unusual that they can tell that your mum is inoperable just from reading cell counts, although this type of cancer seems to come with all different situations for everyone.

My Dad was on Gemcitibine for 4 months, half hour infusion every wk for 3 wks and a wk off (was suppose to be 6 months). He tolerated it quite well with managable side effects. Although it is all individual how someone will cope with it. They took my dad off chemo early as his tumor marker count came down quite well. He has now been off chemo for 2 months and seems to be doing well, good energy and eating well. His first scan is on the 16th of April and this will reveal how much good the Gemcitibine has done for him. Dare we feel positive??

As Louie says it is very important to look out for a low/high temp. A month back my Dad took shivers and then sweats. He needed to go into hospital for antibotic treatment, which left him very weak and down in the dumps for a while. Thankfully we were on the ball and got him in to hospital and he is doing good now.

You should get an education session before your mum starts the Chemo. Its good that you have a job that is flexable incase she might need some help. I really hope it goes well for your mum and if you need any advise or somewhere to let it all out, this is a great place for it.

Takecare Rachel x

lisaH
Posts: 8
Joined: Wed Apr 04, 2012 12:26 pm

Re: Welcome to this new forum

Postby lisaH » Sat Apr 07, 2012 10:31 pm

Hi Louie and Rachel,
Thank you so much for your replies. I will definately monitor her temperature when she starts treatment. I am happy your Dad is doing well Rachel, this gives me hope.
My mum is positive but does suffer from anxiety so we are taking each day as it comes.
Our visit with the chemo nurses is on 17th April and hopefully her bloods are okay enough from her jaundice and she can start treatment as soon as possible.
I did get a call from her consultant and he was very helpful and explained why he quoted 6 months if mum refused treatment. Reading other people's stories and experiences gives me an idea of what to expect but I intend to whisk my mum away shopping and for meals and weekends away if she can, when she feels well in the fourth week.
Again, many thanks,
Lisa

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Welcome to this new forum

Postby laura » Sat Apr 07, 2012 11:20 pm

hello lisa
my hubby bri has been on Gemcap, which is gemcitabine, the infusion part which he had for 3 out of four weeks, and capecitabine which is the tablet form of chemo, which he also had twice daily for three weeks, then one week clear.
bri had 19 consecutive months, his last one being last oct/nov has had two scans since then at three month intervals and results are showing tumour static and no mets, i/we do realise how lucky we are in the grand scheme of things.
like rachel said seems unusual that you can be told its inoperable, yet cannot be seen!
perhaps you could ask more explanation about that, dont be afraid to ask, ask, ask,my hubby also suffers from anxiety/ stress, your mum should be able to get some treatment/tablets for this, or a top up or increase if she already takes medication, bris just had an extra tablet added to his regime. ongoin chemo can cause different problems.
bri also suffered from bad shivering to sweats where he laid on towls and they and the quilt were soaked through, but only once in all those months did he have to be admitted with high temp and infection, so sweating doesnt always signify high temp, keep an eye on mum but try not to get paranoid about it, towards the latter months of chemo swollen legs were a problem, u find you just deal with these things as they happen, every one is so differant, you and mum will get used to how she feels and deal with it accordingly, we always found the oncology team were always happy to talk to us on the fone or call us back if we had a problem/query, hope whichever area/hospital is looking after you is as good as cornwall, think carefully about booking time of too soon, you may find mum will be ok, though sure she would love to have you around, when/if bri was feeling iffy, hed go to bed and invariable be able to sleep the symptoms off, fancying and the taste of food was perhaps one of the biggest problems he still isny eating such a varied diet as he used to, he was never sick on the chemo but did have two domperidone with every meal, will never know now whether they worked or not?! hope some of this waffle is useful, regards laura

lisaH
Posts: 8
Joined: Wed Apr 04, 2012 12:26 pm

Re: Welcome to this new forum

Postby lisaH » Thu Apr 19, 2012 9:04 pm

Hi Laura,
Thank you so much for your reply. I am so happy for Bri and wish you both the very best. I have taken note of everything you have said and hopefully my Mum will react well with the treatment. I haven't been on site for a while as she hasn't yet started the chemo. We went to talk to the nurses this week and they forgot to give her the consent forms so it will be another week and a half before she starts the treatment. At the moment she is not well which is worrying me, I think she may have cracked a rib as she has lost so much weight and probably overdid things, waiting for the xray. She is very positive but getting a bit scared of course. I understand that I can't drag her away on holiday as after talking about side effects we have to take each day as it comes. Your husband is a very brave man and obviously is a very strong person who loves life. I work for a Carers Organisation and come across things like this daily but you tend to detatch yourself when it's your work and you can't really understand the awful thing that cancer is until someone close to you suffers. I can't say its nice to talk to someone in a similar position as I wish nobody has this terrible disease but thank you so much, you have helped tremendously and I look forward to talking to you again with positive outcomes on both side. Bless you.
Lisa

lisaH
Posts: 8
Joined: Wed Apr 04, 2012 12:26 pm

Re: Welcome to this new forum

Postby lisaH » Tue Jul 24, 2012 10:48 pm

I haven't been on the forum since my Mum started her chemo in April. I am happy to say that after 3 months of gemcitabine and oral that her mass has reduced considerably and after the CT scan yesterday the results showed it hasn't spread any further from the pancreas and she is to have another 3 months. Luckily she has had minimal side effects from the drugs, just a bit of sickness for a couple of days. She is very sleepy and weak the day after so she sleeps that day but is her normal self on day 3. No temperatures but her taste buds are very unusual as to be expected. She does not cope well with the actual treatments and gets quite agitated in the chair and finds it very uncomfortable. We had the worst time on treatment 9 (the last of the 3 month cycle) and I truly thought she would refuse further treatment. When my daughters have been with her a few times (they are 25 and 20) she seems more positive, but breaks down when I take her. This is quite draining for me as I am cheerful and positive and wonder why this is. We went away for 3 days at the end of this cycle and I think this has given her something to be positive about. I find it difficult to go to every treatment due to work commitments and luckily my youngest daughter is home from Uni and has helped considerably by going with Mum when I can't make it. I am positive now that she will have the full predicted span of time and I just have to be positive for her but it is very difficult and I feel drained all the time and am beginning to dread each week. This seems really selfish of me and I try to be positive but find I am down for a few days a week which I can't explain. One thing Mum says as soon as we arrive at the hospital is that she can taste the chemo. We also have to wait from 1 to 3 hours past the appointment time each time as the medicines never arrive on time and this stresses her out quite a bit. Maggies who are connected to the hospital (name removed - moderator) are wonderful but Mum won't have anything to do with the wonderful activities they provide unfortunately. If anyone is visiting the (name removed - moderator) I would recommend visiting them, they are similar to Macmillan and are based in a treehouse type building which has an interior designed by Paul Smith.
Thanks to everyone who has responded to my posts and I hope you are all well.
Lisa

PCUK Nurse Jeni
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Welcome to this new forum

Postby PCUK Nurse Jeni » Fri Jul 27, 2012 12:34 pm

Hi Lisa,

This is really great news! I hope your mum continues to do really well with the next lot of chemo.

People do comment on the "taste" or even "smell" of chemo. If you speak to the pharmacists, they will say it does not have a "taste" or "smell", but people who are having it often comment on this, so it must be something you experience only if you are having chemo.

Jeni.