Chemotherapy options

[DRAD3]

Hi Carole - so sorry to hear that it took admittance to A&E to get things done - I do get so angry on everyone's behalf - but great news that the stent procedure was done and is making such a difference. My husband was gravely ill one minute, one botched stent procedure sending him further downhill (like you I was unsure who to call, what to do) but second stent worked and it was uphill almost immediately - he told me at the time that he felt a difference instantly - it was amazing! You shouldn't have to chase and I don't think the pace things go is anything to do with being labelled no-hopers, it is just that the NHS is a massive extremely slow moving monstrous machine (I work for it, so I know!) and no-one intentionally misses things but things do get missed and those who shout the loudest get dealt with the quickest, so get yourself a mega-phone! Good on you for keeping positive and planning for good things ahead - attitude does make such a difference I am sure - keep it up and we will be right behind you!

Much love

Deb

x

[Sueba]

Hi Carole

I've just read your post about your husband,I hope everything is going to plan now and his stent is in and he is ready for chemo.We are in a similar situation,my 42 year old fit husband was diagnosed with inoperable PC in October,like your husband he had a stent fitted and has just had his 5th dose of the same chemo your husband is due to have.He has it every 2 weeks and takes about 5 hours to administer the first 2 drugs and then comes home with a pump on (with the 3rd infusion)for the next 48 hours.He was pretty sickly the first 2 treatments but seems to be tolerating it much better after adjusting his anti sickness meds.The main thing he's had to deal with is fatigue,he just has to listen to his body and rest,it is a very aggressive treatment but we take comfort from the fact it is getting easier and the optimists in us is hoping the tumour is shrinking.one mor chemo left in this cycle then a scan,then after that we're not sure,another 6 maybe?we will see!

We take each day as it comes,I try not to cry in front of the children,we have 17 year old twins and a 12 year old.They know everything that is going on with his treatment we try to be as open as possible.

Take care and take your strength from positive friends and family around you,I send you all my love and hugs,please don't hesitate to contact me if you want to share concerns on the chemo.Chin up!

Sue b

Xxxx

[Carole McGregor]

Hi Sue

So glad to get your message. I read your posts previously and was immediately struck by the similarities between our situations. I tried to post a message to you but not brilliant at this sort of thing and I think it disappeared into cyberspace somewhere !

Clive's chemo is scheduled to start on Thursday assuming that bilirubin (?) levels are ok. From what you've described it's exactly the same as what your husband is going through. We've been told that main risk is low blood count and inability to fight off infection so me and the kids are all having flu vaccination and I'm going to stand guard at the front door to vet all visitors. If they so much as sniff, they're not getting in ! Our twins (boy and girl aged 12) seem to be coping ok but don't like talking about it. I worry that I'm not giving them the time and attention they need to help them come to terms with whats happening to their Dad. All my energy is spent on supporting Clive and trying to keep everyday life as normal as possible. Does your husband have good days at any stage in his chemo cycle ? Have you been able to do much together while this is going on ? I try very hard not to think too far ahead but sometimes when that fear grips me I have to remind myself that whatever happens in the future, Clive is with me right here and now and I don't want to waste this time.

Sending you and your family every positive vibe I can muster. Our amazing husbands are young, fit and strong with two fantastic women fighting alongside them !

Carole xxx

[Sueba]

Hi Carole

So pleased to hear from you! Sounds like you're about to jump on the same roller coaster ride as us!

Micks bilirubin levels dropped pretty quickly once his stent was in so fingers crossed your husbands treatment starts on schedule. As I said in my previous post the main thing Mick has had to deal with is fatigue. Once his anti sickness meds were changed, it's funny how you get into a routine, he takes his time getting up in a morning has some porridge, then an hour later some jam on toast (with creon). We are very conscious of keeping his weight up. Then we find we have a small window of time from about 10:30am till 12 pm that we might go for a short walk or nip into town to do some jobs. He's always hungry about 12:30 and then he quite often has a bit of a nap in the afternoon on the settee (daytime tv very boring!) We find we quite often have visitors in an afternoon from about 2:30 pm which is great as they always perk us up! The boys usually get home about 4 pm and he's usually come round by then!! We find this is our routine the first week following chemo but the 2nd week he picks up even more and we find we can go out for lunch etc. We haven't done the cinema as I am worried about him catching any bugs!

Be very firm on that front! Mick caught a cold just after Christmas,he started coughing and his temp had gone up so I rang the hotline number the hospital had given us (we live in the northwest) and he was admitted overnight with the start of a chest infection! He was given antibiotics but it did knock him back a few days!!

He has chemo on a Friday and we find that the mon to thurs before it he is getting back to normal ready to be knocked back down with chemo. Its my youngest sons 13th birthday on Monday and we have booked a meal out in my sons favourite Italian restaurant.

He has lost some hair, but not all of it! And some days he looks better than others. I haven't worked since his diagnosis as I have needed to be with him not just to support him physically but mentally!! We have joked that's its a good job we still get on spending all this time together!

The boys are coping remarkably well, the youngest doesn't fully understand what's going on, which is fine, and the twins have been a fantastic support, very positive!

So like you I have to remind myself he's here now and to make lots of happy memories. I'm trying to just focus on every new day and not look too far ahead for now!

If you would like to privately email me please feel free to ask the moderator for my email.

You are coping really well I will be thinking of you and sending positive thoughts your way!!

Hugs!

Sue B

Xxxxxxx

[karen17]

Hi Sue B and Carole,

I'm a newcomer on here but had to post this message as your situations sound so similar to mine. My husband a healthy fit ( or so we thought! ) 51 year old was diagnosed with inoperable pc at the end of November. He has commenced folfirinox which sound like the same chemo as your husbands and is due to have the 3rd cycle tomorrow. He is tolerating it well with the only complaints being tingling and coldness in his hands and feet and a general feeling of tiredness on day 5. He is still working and we are doing everything as normal really. He tends to react to the chemo whilst it is being infused in hospital so they have to slow it down. We were there 10 hours a fortnight ago! It's an exhusting stressful day plus we have to travel a fair way as chose to be treated in another county. Do your husbands find they have strange cravings for food? Would be interested to know how the chemo affects them and also whether you have looked at other treatment options.

Karen

[Sueba]

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]

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]

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]

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]

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]

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]

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]

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]

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

Love

Sue B

[karen17]

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]

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]

Hi Sue,

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

[Sueba]

Hi Karen

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

Sue

Xxx

[Carole McGregor]

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]

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

[karen17]

Hi Carol,

I have been wondering how Clive has been doing and am so sorry to read your last post. I have to agree with you in that this MDT meeting seems very elusive. We also keep being told we have not been discussed as yet in the meeting. Although evryone we see is lovely it is just not the seamless joined up service it should be and people are not looked at as individuals. I am planning to write to the consultant surgeon for advice just so I know our case is looked at. Well hopefully anyway!

Will be thinking of you and hoping that you have good results from the scan.

Be strong

Karen xx

[Cathy]

Hi there

When I was waiting to be verified so I could post on this forum I read this thread and was almost shouting at my laptop "this is me as well!" My partner was diagnosed just before Christmas 2012, was fit and healthy, full of energy and now on the same chemo regime.

He has sailed through the last cycle with barely a blip, however, unlike Karen's Bob, hasn't been doing any rewiring or DIY (more is the pity). I may shove him outside with a hedge trimmer later if the weather stays dry

All the best for Clive's results Carol. I'll be looking out for your post.

Cathy xx

[Carole McGregor]

Hi everyone

Just thought I'd let you all know that we have been thrown a lifeline ! Scans didn't show any shrinkage but no progression either. Surgeon has decided that it is still worth attempting Whipples and surgery scheduled for 28th. He has given us a 50/50 chance of being able to remove tumour. Concern is 'cuffing' on scan adjacent to hepatic artery but he has had a case recently where this turned out to be inflammation probably caused by the Folfirinox. So, tissue will be analysed while Clive in theatre and if clear, the nasty little tumour will be history !

All very scary but we both know how lucky Clive is to be given this chance. He is feeling great and putting on weight every day. Even did the school run this morning - first time in seven months - mum had long lie for a change - bliss ! Twins will be away on activity week with school while their Dad is in hospital so they'll be too busy having fun to worry which is just perfect.

Thinking of you all and sending you much love.

Carole

[Cathy]

Hi Carole

Wow! That is fantastic news. So hopeful.

Have you a date for the surgery yet?

Cath xx

[PCUK Nurse Jeni]

Wonderful news, all the very best to Clive for the operation.

Kind regards,

Support Team.