Chemotherapy options

[Carole McGregor]

Hello everyone. This is my first attempt at posting on the discussion forum so fingers crossed I get it right ! My lovely husband has recently been diagnosed with pancreatic cancer. We've been told that it is borderline operable and his surgeon wants him to undergo a course of chemo first to try and shrink the tumour before deciding if surgery is to go ahead. We asked for a second opinion and this confirmed our surgeons position. I know that this is a relatively new approach in the treatment of pancreatic cancer and there are, as yet, no completed studies or trials to assess the effectiveness of it. I just wondered if there was anyone out there in a similar position ?

We have our first appointment with an oncologist next Wednesday and I would really like to know what is considered to be the most effective approach for this horrible cancer. There has been some Press coverage recently about some cancer drugs not being as readily available where we live than other parts of the UK and I want to make sure Clive doesnt lose out. His surgeon mentioned a new(ish), more aggressive chemo drug that he may be offered. Does anyone know what what this might be ? Clive is a relatively fit 59 year old and is up for anything that will give him the best possible chance of being around to watch our 12 year old twins grow up.

My heart goes out to all of you affected by this cruel disease.

[suef]

Dear Carole,

I am so sorry to hear your sad news, but you have come to the right place. You will get lots of support and practical information here.

Although I have not had chemotherapy (I had a Whipple directly), a dear friend of mine was in the same situation as your husband. She had chemo to shrink the tumour, which was close to a major artery, and then had a successful Whipple. Is now recovering well.

I do urge you to contact the support staff on this website, who have medical qualifications and can give you excellent advice. You can email support@pancreaticcancer.org.uk or phone 020 3535 7099.

I wish you and your family much courage. Do keep in touch.

Sue F

[Carole McGregor]

Oh Sue, thank you so much for replying. Knowing that there is someone out there surviving in a similar position to Clive is just the kind of thing we hoped to hear. Many, many thanks.

[laura]

dear carole, my hubby bri, diagnosed feb 2010, whipple attempted apr 2010 tumour round mesenteric vein [ smv] 19 months chem comm june 2010, 2 or 3 shrinkages during treatment, chemo stopped, for a break, nov 2011, seen 3 monthly by oncologist also scanned at same time.

bri had Gemcap, gemcitabine intravenously, capecitabine orally, for 3 out of every 4 weeks, he tolerated this well, will be put back on it if neccassary,

brian was just 61 when diagnosed, is doing ok, although the tiredness is still with him, all in all tolerated chemo very well, certainly not aggresive.

i understand that surgeons can NEVER be sure if operable untill they open people up, as the pancreas is hidden, this was certainly the case with brian,

we live in cornwall and recieve excellant treatment from our team, i hope you will too.

write down your questions and the answers you are given,

you can read my [many] posts by clicking on my name, the very best to you and hubby

kind regards laura x

[PCUK Nurse Jeni]

Hi Carole,

Well done on your first post!

I would imagine that the treatment they are referring to would be a regime called FOLFIRINOX - a combination of 3 drugs (Oxaliplatin, 5FU and Irinotecan).

Drop me an email on the support line and I can explain more about this, or do call if you prefer.

Best wishes,

Jeni.

[suef]

Dear Carole,

Just a little note to wonder how you are getting on?

Thinking of you,

Sue F

[Carole McGregor]

Hi all

Had a really good meeting with oncologist. Clive is to get Folfirinox for next three months. He is to have a PICC line inserted so that he can be treated as an out patient but because of the Xmas holidays this can't be done until mid January. We were given the option of starting earlier on an in-patient basis which we've taken so Clive will be admitted on 28th of December. All a bit scary and there is a lot to take in but it feels good to have things moving on. We were due to have our usual pre Xmas weekend in London with the kids (Slava's snowshow this year) but have decided to cancel. Clive having periods of discomfort and probably not wise to expose him to bugs on planes and trains anyway. We will need to tell the kids now what is happening and just trying to work out how best to do this.

I know I'll have loads of questions as this progresses and its great to have Jeni and this forum to turn to. Do you think I'll be able to stay with Clive for more than just the normal hospital visiting times ? The oncologist said he would probably have his pick of beds given the time of year so I'm hoping things will be a bit more relaxed than normal. He is bearing up well but understandably apprehensive. I thought I was doing brilliantly till I started crying while out shopping today !

Thank you Laura and Sue for your replies. I've read your other posts and I'm stunned at how you manage to find the time and energy to support so many people while you have your own battles to fight. You both have very big hearts ladies.

Carole xxx

[PCUK Nurse Jeni]

Hi Carole,

Good to hear your update. Things are moving in the right direction, and it is always a relief to patients when they "feel" as though something is being done to attack the cancer.

I would imagine that you would have some leeway with regard to visiting, especially at this time of year. Usually, hospitals are a bit more relaxed at Christmas. I assume they will carry on with the plan to insert a PICC at some stage, so than subsequent cycles can be given as an outpatient? You will be able to stay with Clive in the chemo unit. Some places have restrictions on the number of visitors who can accompany the patient when having chemo, but most of the time it is 1-2 visitors per person. (usually due to space).

Sorry to hear that you had to cancel your Christmas show - is there anything locally you could attend as a family? Might be nice before chemo starts as you can never tell how a person will react to chemo, and Folfirinox is a strong combination.

I would like to wish you and the family a peaceful Christmas, whatever you decide to do.

Kind regards,

Jeni.

[laura]

hi there carole. so pleased that things are starting to happen for your husband, makes you feel better doesnt it?

i always went with brian for his treatment, and whilst we were usually only there for max 2hrs, others were certainly there all day!

in our dept there are lovely reclining chairs and total support and care. whilst some slept thru their treatment, friends or relatives stayed with them, we were well suplied with tea etc, and some took their own food in,[ take book, ipad, comp etc!]

we found ours a real family enviroment, i hope you too have a good experience,

i would suggest you keep your talk with the children short and to the point, you will find that if they want to know more, they will ask you, its very important they can trust you, so try to avoid telling little "fibs" easier said, i know. so all the best with that hurdle, you only have to get over it once, you say you do things as a family, well that includes this as well, so go on be strong!

love and best wishes to you both, love laura xxxx

[jamescotterell]

Hi carole

i know what you`re going through as i recently lost my step dad to this evil disease - he was 58. I wanted to let you know about another option if you`re interested. it`s more suited to advanced patients who are only having chemo (surgery is always the best option), but you maybe interested as a back up plan.

I am a geneticist/biochemist and I did everything in my power to give melvyn the best chance. Through this process i realised that there are powerful tools out there that we use in biological research to give people a better chance but they are simply at too much of an early stage for the NHS to have picked them up. We used them...

We sequenced part of the genome of his cancer and normal tissue in order to identify exactly which mutations are driving the cancer. Using this information we suggested a drug/trial to his oncologist which was more suited to his specific cancer. Cancer shouldn`t really be considered one disease and the best therapy depends exactly on what type of cancer that person has (i.e. which combination of mutations).

Unfortunately we were thwarted in the end by a mixture of red tape and ignorance of the oncologist to basic cell biology and couldn`t get the treatment we wanted even though they weren`t offering him anything else! We should have switched to a more experimental hospital earlier, lesson learnt.

Anyway if you want to contact me i can give you more information on what we did and how this can be done. It`s another option. Just ask the moderators to pass you my email.

Merry christmas! Good luck with the cancer reduction! let`s hope he`s one of the lucky ones who can be operated!

James

[suef]

What a wonderful forum this is, with so much knowledge and experience out there, all being shared so generously.

I do strongly underline something that James said - don't give in to bureaucracy, keep fighting! It will help to keep you going and it will probably make a difference to the care your husband receives. One health worker told me 'Every patient needs a strong advocate', and I do believe she was right.

Merry Christmas everyone!

SueF

[Carole McGregor]

Hi all

Clive's chemo was supposed to start yesterday but we were sent home from the hospital when his blood tests indicated a problem with his liver. He is to have an ultrasound scan on Monday and his bloods are being monitored in the meantime. The doctor on duty (no one we had met before) had zero communication skills. We are not stupid people but struggled to understand what was going on. Think it's something to do with the inability of his body to deal with waste products and risk of crystals forming in his blood ? We were told that if the tumour is now causing a blockage they would go ahead with chemo anyway. When I asked what would cause the chemo to be aborted, we didn't get a clear answer. It's all so frustrating. It's been several months now since Clive was first diagnosed and still nothing has happened ! Hospital is like a ghost town with few people around and the oncologist in charge of Clive's case on holiday. Makes me wonder if the medical staff on duty are just happy to keep things ticking over until the big guns come back to make the decisions.

Sorry - not making much sense I know and not asking you all out there to make a diagnosis but has anyone had a similar setback ? All childcare arrangements now scuppered and having to keep family and friends on standby should Clive's treatment actually start.

Carole

[claralondon]

Hi Carole

so sorry to hear you've had this obstacle to the all important chemo for Clive. I am not medically trained at all, but through my Dad's experience I can tell you that his oncologist delayed the start of chemo for 3 weeks because Dad's Bilirubin levels and one other liver enzyme needed to come down. Due to the location of Dad's PC, his bile duct was blocked and this caused an excess of Bilirubin (leading to jaundice) and also messed with his liver function. They placed a stent in the duct before he'd seen the oncologist, and at the oncology meeting they were told that the levels had to come down before they could start chemo. He was told to wait 3 weeks and have two Liver function tests during that time. Happily the levels came down and chemo was started.

As I understand it, some of the drugs used for PC are particularly active in the Liver and therefore the medics need to be happy that liver function is stable before commencing treatment. That said, since I was concerned when Dad told us of the delay, I looked into medical info on the internet about what would happen if the liver function didn't get better, and it seems there are other drug regimes they can try, or, they adjust dosing, or of course there is stuff they can do to help resolve the liver function (Stents/bypasses etc). I would imagine they would have to have tried everything possible before abandoning chemo as an option, so whilst I am sure it feels extremely worrying and frustrating, in my non medical opinion, I am sure it's unlikely at this point they will be considering aborting chemo.

I imagine they just need the consultant oncologist to review the situation and prescribe the next course of action before getting started and if he or she is away then there will be a bit of a delay. Of course it is terribly distressing to learn of this just as you've psyched yourselves up for the treatment. I know some people on here have talked about getting the bloods done a bit before the chemo date, through the GP, and then getting the results via the GP so as to avoid pitching up to the hospital and being let down - not sure if there is an option for this where you are, but it might be worth trying. You could also try ringing the oncology department handling Clive's case and ask them to tell you again what the issue is, and perhaps head to the GP so they can explain it to you, or come back on here and see if anyone has specific experience.

Really hoping you get some better news soon. I know how difficult this all is. Much love to you and your family.

[susikus]

Hi Carole, I am sorry you're in this horrid situation and share your frustration. I agree with all that has been written and have two more nuggets of information that might be helpful. Firstly we were told that gemcitabine is excreted in bile and therefore the liver must be functioning well and there be no bile duct blockages before it can be given. This could be true for other chemo options too. I am someone who likes/needs to understand why, not just be told, then it makes sense to me and I can accept it. I used to find it so frustrating just to be told with no explanation!

Also - were you assigned a specialist nurse? We were and I believe we all should be. Ours was a specialist liver and pancreas nurse and she did all the liaising with the other specialities and organised all the data for the MDT (multi disciplinary team) meetings. If you have a contact then ring her/him, daily if need be. Be lovely but persistent. Ask questions and advocate, advocate, advocate...

And keep us posted. I found this forum and PCUK website more helpful than any other source. I also discovered, really far too late, that our hospital had a superb Macmillan centre next door to the oncology outpatients and they had some superb information booklets and books. This discovery was by accident, weeks after diagnosis and shortly before Pete died, so really far too late for us - why did no-one think to tell us about it? It is the story of the NHS I am afraid - you need to do the work to find out what is available.

Lots of love

Sue

xxx

[Carole McGregor]

Thank you all for your really helpful and supportive responses. I've calmed down a bit but still quite worried by the continuing delays. I've read so many dreadful accounts of how quickly this disease can progress and I find myself watching Clive all the time for signs of change.

Stent procedure is scheduled for Tuesday and we've been told that chemo should start a week later if all goes well. Apparently there was some debate as to whether stent really necessary as Clive's bloods indicate that liver function is improving but on balance, doctors believe it better to do procedure now to avoid any further possible disruption of chemo later. Sounds logical I guess. As Clive told one of the doctors at the Cancer centre last week, whilst I'm not medically qualified, I do watch a lot of Gray's Anatomy !

2013 is going to be a challenge for us and I dont know what is ahead but I only need to scan the stories in this forum to realise just how lucky we are to be still in with a chance.

Best wishes to all

Carole

[suef]

Dear Carole,

So sorry to hear about your ongoing problems. Do keep pushing the NHS, especially over holiday times when key people vanish. And if someone tries to 'blind you with science' make them explain clearly. It is the mark of someone who really knows the topic to be able to explain it clearly rather than just using long words.

It sounds as if you are acquiring a lot of knowledge about PC, and that is really useful because the symptoms and treatment are really not well known in the NHS except amongst those who work in the field. MY GP's practice have never had a case in all the years they have been active (I was diagnosed and operated in Belgium).

Good luck and take care,

SueF x

[DRAD3]

Hi Carole

Glad to hear that Clive's liver function has improved and the stent procedure booked - all goods signs that he will continue to feel better and things are moving in the right direction and picking up pace (it is scary to be in need of medical help during the holiday season when all the hospitals are like ghost towns - xmas gets in the way of life sometimes don't you think?!) Fingers crossed that things continue to go well and that chemo can go ahead as planned. Keep positive and take care of yourself too.

love Deb

x

[Carole McGregor]

In panic mode again. Clive jaundiced this morning and feeling awful. Called NHS 24 who had doctor out in 20 mins. He checked him over and left his number to call if Clive becomes disorientated or confused. He was reassured and feeling better. Gave him a sandwich for lunch and he went downhill after that. Really sick. Now resting but not feeling much better. Presume stent will sort problem but can we wait till Tuesday ? He doesn't 't want me to call NHS 24 again as he doesn't want to be in hospital if there is nothing they can do immediately to help. Feel the weight of responsibility here. I hope I do the right thing. Why do these things always happen at weekends ?

[suef]

Dear Carole,

So sorry to hear about Clive's jaundice etc. How is he this morning? How are you?

Hopefully the NHS will be back at work tomorrow, there is really no excuse for this lack of coverage over holidays.

Thinking of you!

SueF

[DRAD3]

Hi Carole - have you not got the number for the hospital he is being treated at? Once chemotherapy starts you will probably be given telephone numbers as a matter of course but I don't see why you can't follow this procedure now if you have any concerns. If you have the oncologists name, ring the hospital, ask for the on-call oncologist and explain where you are in the scheme of things and what you are worried about. Not sure what hospital you are under and whether this is possible - let me know. It is important that you get the necessary support - it is very isolating I know and having people on the end of a phone is crucial for your peace of mind - I would start getting together as many names and numbers as you can - hospital, oncologist's office, clinical nurse specialist, macmillan (or similar) nurse - you can't have too much help. Good luck.

love

Deb

x

[Trevor F]

Abraxane ---- knockout stuff, but it works.

I had a Whipples resection in June 2009 and I keep going

[PCUK Nurse Jeni]

Hi Carole,

Sorry to hear about the problems Clive is experiencing.

If you are more worried about him, and if he dis-improves again, do take him to your local A+E. Jaundice can make him feel very unwell, and nauseated. Also itchy.

Let us know how you are getting on.

KR,

Jeni.

[Carole McGregor]

Thank you all for your messages. Clive ended up in A&E late Saturday night (quite an experience given where we live !). He became increasingly unwell, vomiting bile and quite distressed so I called NHS 24 again and they sent a doctor out who called an ambulance. Relieved to report he had his stent procedure brought forward as a result and he is already looking and feeling much better and should be home tomorrow. I had frank conversation with our GI nurse this morning - two months on since diagnosis and still no treatment, unnecessary trauma for Clive avoided if stent had been done sooner etc etc. Tried to be lovely but firm as Sue suggested. Now realise that I have to chase, chase and chase again and not rely on 'the system' to do right by us so my first call in the morning will be to the hospital where Clive is to have his chemotherapy to make sure they have him scheduled in again although I have been assured that this will happen. Trying not to wonder if we have been unofficially put in the 'no hope' category and so given low priority. Have to hold on to my vision of the future - chemo will work wonderfully, tumour will shrivel, surgery will be complete success, our lives will be our own again and our plans for the future no longer on hold. Nice eh ?

Best wishes to you all

Carole

[suef]

Dear Carole,

Good that you are pushing! Be polite but firm! Remember that every patient needs a strong advocate - and that is you!

Take care!

SueF

[susikus]

Well done Carole on being 'lovely but firm'. And you are already making progress. I think that the NHS is a slow old beast. Everyone means well but the organisation is not slick and you have had the misfortune to need help over the holiday period. Now, hols are all over, it is time to identify the people who can really help you and keep on pushing, do everything you can, leave no stone unturned. Glad to hear Clive is feeling better already - how is he feeling mentally? You and he working together will make a strong team. Good luck and do keep us posted.

lots of love

Sue

xxx