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Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Chemotherapy options

Postby Sueba » Thu Jan 17, 2013 7:59 am

Hi Karen
What an awful situation we are all in with our strong, fit husbands!!

It sounds like your husband is coping really well with the chemo as it is a very aggressive therapy. Mick hasn't been able to work at all since diagnosis as everything seemed to move very quickly. He was in hospital having a stent put in, then biopsy etc, and with being a GP he would have been in contact with a lot of germs! Although we've both been going in at least once a week to sort out post, see staff etc. The main thing we've found with the chemo is fatigue, not something he's used to! A lot of this is due to being anaemic because of the chemo he is borderline to having a blood transfusion, although last time his red blood count had gone up slightly. Tomorrow will be his 6th chemo. When he is having the chemo he is fine for the first 2 hours (oxaliplatin, but becomes increasingly sickly/clammy with the 2nd infusion of irinotecan. He does get an injection to counteract these reactions which they now give before the 2nd infusion instead of at the start of chemo and that seems to help. He seems fine with the flouracil which he comes home with in a pump. We find that he is ok then till about day 5 or 6 (like your husband), but then has a few low days. We think this is when he comes off the steroids, then it takes him a few days to build backup to "normal"again! By Tuesday he feels well again and we get out for walks, shopping etc, giving the boys lifts etc... Ready to be knocked down on the Friday again with chemo!!!

We are off to have his bloods done today and hopefully ask what next after his scan next week!
Keep strong and hope chemo goes well!
Sue B
Xxxx

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Chemotherapy options

Postby karen17 » Fri Jan 18, 2013 4:09 pm

Hi Sue,
Thank you for your reply. My husband also reacted to the Irinotecan feeling clammy and profuse sweating. They now give him hydrocortisone prior to this infusion which appeared to be of great benefit yesterday. They also give piriton s/c which he hates as really painful. Only took 6.5 hours yesterday and would have been home early if not for the dreadful weather!
It would be difficult for your husband to work given that he has to see lots of people with infections. I'm a health visitor and now tend to ask clients to let me know if the children are ill before I go. My colleagues are a great support and will help me out if needed.
I'm sure that you will be constantly looking at current research etc. Have you looked into Nanoknife or chemosaturation? I give Bob Omega 3 fish oil in a fairly high dose daily. His oncologist said it was ok to take this. Have heard this is beneficial and anything is worth a try.
Fingers crossed for your scan next week and let us know what the next course of action will be.
Take care
Karen xx

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Chemotherapy options

Postby Carole McGregor » Fri Jan 18, 2013 7:54 pm

Clive started his first chemo cycle yesterday - hoorah ! At last, some action and a sense of fighting back. All went ok apart from young nurse who couldn't do a simple division calculation (even with a calculator ) and set flow rate for Irinotecan twice as fast as it should have been. Clive really unwell for a while, eyes suddenly hurt and very watery, lots of saliva etc. Recovered quickly after atropine injection and we have been assured no harm done (!) On the bright side, gave me opportunity to nag kids (again) about importance of maths homework. Now home with 5FU pump. Minor panic this morning when I came back from the school run to find him trying to eat cornflakes with his left hand whilst blood poured from his PICC line on right arm. Hasty drive back to hospital to have it looked at and re dressed. He hasn't eaten much since and I haven't forced the issue. Hoping his appetite will pick up a little in a few days ?

Haven't done much research on alternatives as yet. Still hoping that surgery will become possible. Before all this happened, it never occurred to me that there could be so few treatment options available for some cancers. Ashamed to think of it now.

Sue - Jeni has kindly provided your private email address as you suggested so hope it's ok to drop you an email directly.

Karen - If you want to share notes and discuss offline too, perhaps you could ask Jeni for mine / Sue's email ? Really impressed that you and your husband are both still working. I'm sure it must help. I'm afraid I find it hard to focus on anything else at the moment. Had call the other day from the office asking for some input on an issue I had dealt with before leaving - it was a really important client and I was heavily involved and I struggled to remember a single thing about it. Was that really my life only a few short months ago ? Feels like someone else, not me.

Take care
Carole

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Chemotherapy options

Postby Sueba » Fri Jan 18, 2013 11:11 pm

Hi Carole and Karen
Home after chemo number 6 luckily didn't get as much snow as forecast so not as bad a drive home as I thought it would be,just the odd hairy bit!
Micks sat in the other room watching tv having some quiet time after chemo,same reaction as normal during last hour,he has an atropine injection just before the irinocetin infusion but wears off for last hour when he goes sweaty and clammy.
We saw the oncologist yesterday who said the team will meet and discuss his scan then discuss the results with us the following day,however they've booked him on chemo 7 for two weeks today as you miss your slot otherwise.Obviously the best outcome would be that the tumour has shrunk massively and become operable but the surgeon originally told us that as the tumour is wrapped around the main blood vessels it prob will not become operable!but we have to live in hope and are possibly looking into nanoknife or possibly into surgeons with the skills to operate with veins/arteries.But probably as you two are doing we are taking each day at a time.
What we are learning is that NOTHING matters,just family and health and we are appreciating our time together as a family,taking photos and making memories.
Love to you both
Sue
Xxxxxx

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Chemotherapy options

Postby karen17 » Tue Jan 22, 2013 9:02 pm

Hi Carole and Sue,
Pleased to hear that Clive has had his 1st cycle of chemo. I agree you feel like it gives you the opportunity to fight back. Hope he's not feeling too bad and is managing to eat plus no more incidents with the Picc line!
I have been thinking about you Sue over the past couple of days as I guess you may have had the results of Mick's scan by now.
I would love to have your email addresses but have not worked out how to contact Jenni to ask for them!
Take care
Karen xx

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Chemotherapy options

Postby Sueba » Tue Jan 22, 2013 10:06 pm

Hi Carole and Karen
Hope both you are husbands are doing ok,yes would be good to have emails but I don't know how to get them!!presume a moderator will maybe read our posts and help us out?
No scan results yet Karen,he had chemo 6 on Friday and scan is this Friday,we don't get results till following Thursday when he goes for bloods then he's booked on chemo 7 the day after unless things change!one day at a time at moment!
How's your husband getting on?
Love
Sue B

DRAD3
Posts: 435
Joined: Wed Mar 16, 2011 11:22 am

Re: Chemotherapy options

Postby DRAD3 » Wed Jan 23, 2013 11:12 am

Hi all
So wonderful to see you supporting each other and hoping that this is helping you at this difficult time as you help your loved ones. Just wanted to say that I follow your threads and think of you and am sending love and strength. If support team do not pick up on your question regarding swapping emails, contact them directly and ask them to put you in touch with each other - they will certainly help.
love
Deb
x

susikus
Posts: 188
Joined: Wed Sep 05, 2012 11:01 am

Re: Chemotherapy options

Postby susikus » Wed Jan 23, 2013 11:51 am

I agree Deb, this is peer support at its very best. Just to say you can email Jeni at PCUK directly, her email is jeni@pancreaticcancer.org.uk and she will happily facilitate you swapping email addresses so that you can communicate directly. I too think of you all and send you my love, Sue, xxx

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Chemotherapy options

Postby Sueba » Wed Jan 23, 2013 5:30 pm

Thanks Deb and sue for your kind words and info on getting emails,hope you are both ok.
Love
Sue B

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Chemotherapy options

Postby karen17 » Tue Jan 29, 2013 10:56 pm

Hello there Carole and Sue,
I have not had the time to get online over the past week but have been thinking about you both and the rest of the online 'family'. We are ready for round 4 this thursday. The side effects seemed to last longer this time with hubby complaining that most foods are tasteless. It could be my cooking of course! Otherwise he has been physically ok but emotionally a little down.
I have finally emailed to ask for your contact emails so hope to be able to chat to you soon.
Hope to hear your news soon
Karen xx

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Chemotherapy options

Postby Sueba » Tue Jan 29, 2013 11:17 pm

Karen
Hi, sorry to hear your hubby's been a bit down hope he starts to feel better soon ( we find a good DVD, Peter Kay etc helps) Got your email address and I've tried to email you and Carole, but yours came back undelivered. See if you have any luck emailing me. Having a good week this week. Micks felt "normal" in his own words so we've been out for walks, coffees etc

Scan results Thursday!
Take care!
Sue
X

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Chemotherapy options

Postby karen17 » Wed Jan 30, 2013 9:39 pm

Hi Sue,
Will be thinking of you on thursday and keeping fingers x for good news xx

Sueba
Posts: 94
Joined: Sat Oct 20, 2012 4:08 am

Re: Chemotherapy options

Postby Sueba » Thu Feb 07, 2013 12:22 am

Hi Karen
Tried emailing you again but keep getting sent back!have you got mine?

Sue
Xxx

Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Re: Chemotherapy options

Postby Carole McGregor » Thu Apr 25, 2013 1:28 am

Hi everyone

Just wanted to vent my anger on someone and know you lovely people out there will understand ! Clive now completed 3 months chemo (folfirinox). Some really unpleasant side effects but on the whole, he has tolerated it reasonably well. Had scan 11th April and appointment today to find out conclusions.. Has tumour shrunk away from the vein ? Is it now operable ? Will Clive be given a chance to see our children grow up ? What kind of future are we facing ? Friends and family holding their breath. Legs shaky as we walked into the hospital. Kept waiting for half an hour (not unusual). Seen by someone we had never met before (again, not unusual). Looked sheepish (not good). It seems no one has actually looked at radiologists report yet. Cancer centre thought surgical unit had Clive's case listed for review at their weekly meeting. Surgical unit knew nothing about it. Seems to me that this 'Co ordinated' MDT approach exists in theory only. In practice, the various professionals in the NHS continue to work in silos.

So, our agonising wait continues. What we have been told is that radiologist's report is inconclusive. Status of tumour unclear because stent in the way and EUS may be required to get clearer picture. This will now be discussed by the 'MDT' tomorrow. No further chemo in meantime.

Oh, and to add insult to injury, we were given a slip to hand into reception on our way out on which the doctor we had just seen had recorded that our appointment had taken place on time. Unbelievable.

Right, that's that off my chest. Thank you !

Carole

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Chemotherapy options

Postby Sones » Thu Apr 25, 2013 8:52 am

Hi Carol I'm so sorry to hear but not surprised at your experience, it is totally unacceptable to treat people like this. Your are absolutely right when you talk about no coordination/ joined up working and the ever talked about MDT. I was sent from one department to another before my diagnosis and I only got it through shear determination and fighting the medical professionals. Only last week I attended my ongoing appointment with my gastroenterologist and was told by the nurse that my blood pressure was exceptionally high, this was passed on to the Dr as I went in and he immediately said "I don't deal with blood pressure' you need to contact your GP" , basically he couldn't be bothered. Each Dr specialises and many wont via from it.
On the up side I do have a lovely caring oncologist who is extremely supportive and will see me within days of making contact should I have any concerns - I go for the results of last weeks scan today.
I don't think it is unreasonable to ask to see the same oncologist each time Carol and would certainly be making my voice heard. I know we British don't like to complain but continuity/seamless service /dignity/caring are just some of the words quoted in all NHS documentation and in your case they need to put this into practice.
Sorry I'm ranting but it makes me so angry.
I do hope Clive's results show some positives, my fingers will be truly crossed and my thoughts with you.
Sue.x

Sue.x