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

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Carole McGregor
Posts: 50
Joined: Thu Dec 13, 2012 9:19 pm

Chemotherapy options

Postby Carole McGregor » Sun Dec 16, 2012 10:19 pm

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
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Chemotherapy options

Postby suef » Sun Dec 16, 2012 10:54 pm

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

Re: Chemotherapy options

Postby Carole McGregor » Sun Dec 16, 2012 10:59 pm

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

Re: Chemotherapy options

Postby laura » Sun Dec 16, 2012 11:22 pm

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
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Chemotherapy options

Postby PCUK Nurse Jeni » Mon Dec 17, 2012 10:35 am

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
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Chemotherapy options

Postby suef » Wed Dec 19, 2012 9:56 pm

Dear Carole,

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

Thinking of you,

Sue F

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

Re: Chemotherapy options

Postby Carole McGregor » Fri Dec 21, 2012 1:12 am

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
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Chemotherapy options

Postby PCUK Nurse Jeni » Fri Dec 21, 2012 10:17 am

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

Re: Chemotherapy options

Postby laura » Sat Dec 22, 2012 1:26 am

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
Posts: 10
Joined: Tue Dec 18, 2012 1:58 am

Re: Chemotherapy options

Postby jamescotterell » Tue Dec 25, 2012 9:23 am

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
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Chemotherapy options

Postby suef » Tue Dec 25, 2012 6:56 pm

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

Re: Chemotherapy options

Postby Carole McGregor » Sun Dec 30, 2012 12:40 am

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
Posts: 5
Joined: Mon Nov 26, 2012 8:16 am

Re: Chemotherapy options

Postby claralondon » Sun Dec 30, 2012 6:36 am

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

Re: Chemotherapy options

Postby susikus » Sun Dec 30, 2012 8:21 am

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

Re: Chemotherapy options

Postby Carole McGregor » Thu Jan 03, 2013 11:49 pm

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