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

Re: Chemotherapy options

Postby karen17 » Sun Apr 28, 2013 5:11 pm

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Chemotherapy options

Postby Cathy » Tue Apr 30, 2013 11:02 am

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

Re: Chemotherapy options

Postby Carole McGregor » Fri May 17, 2013 11:11 am

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Chemotherapy options

Postby Cathy » Fri May 17, 2013 12:02 pm

Hi Carole

Wow! That is fantastic news. So hopeful. :)

Have you a date for the surgery yet?

Cath xx

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

Re: Chemotherapy options

Postby PCUK Nurse Jeni » Fri May 17, 2013 1:49 pm

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

Kind regards,

Support Team.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Chemotherapy options

Postby J_T » Fri May 17, 2013 3:30 pm

Hi Carole just catching up with Clive's story.

This is excellent news, really pleased for you both. Hope everything goes well!

Best wishes
Julia x

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

Re: Chemotherapy options

Postby Carole McGregor » Wed Jul 24, 2013 7:05 pm

Hi everyone

Had to think long and hard before posting again as the news this end isn't great and I know how hard it is to read discouraging stuff when you are going through this hell yourself. Clive's op wasn't successful. Despite clear MRI and CT scans only two weeks previously, Surgeon identified a small area in liver that was found to have been cancer at some stage albeit killed off by chemo. However, this was enough for him to decide not to proceed with removal of pancreatic tumour. He did do bypass of bile duct and duodenum. Truly horrendous time in hospital and Clive has been in a huge amount of discomfort since then. Seems to be mainly wind pains and digestive problems. Appetite also really poor again and is losing weight. Had meeting with oncologist who thinks he should have more Folfirinox although she has no experience of it in a post surgery scenario and so it would be a bit of a leap in the dark as far as Clive's ability to tolerate it is concerned. I know from Sue that Mick had a really difficult time with Folfirinox post Whipple. We've decided to wait for results of more scans to see if the disease has progressed before making a decision. Also exploring nanoknife.

It's been so hard. We cycled round Loch Lommond with the kids the weekend before the op and he has been unable to walk further than the end of the street since then.

So angry that the medical profession has so little to offer people fighting this disease.

Wishing you all the very best in your own personal battles.

Carole

KATB
Posts: 178
Joined: Thu Mar 28, 2013 10:41 am

Re: Chemotherapy options

Postby KATB » Wed Jul 24, 2013 7:33 pm

Goodness Carole, I'm sorry you have had a really tough time of it.

Don't write off FOLFIRINOX though. Everyone reacts differently and actually my dad tolerated it really, really well. The first couple were difficult but after that he was fine on it apart from being tired but he otherwise felt much better - he ate normally again and was up and about and doing a lot more normal stuff.

I know what you mean about the frustration around limited options. We are feeling the same ourselves with regard to dad now and I feel so helpless. The whole thing is making me a ball of anger. I can tolerate absolutely nobody - everyone and everything is irritating me and I feel like I need to go outside and do a massive scream :cry:

We have to somehow soldier on and keep our heads up - so hard, but keep posting as we are all here to support one another.

K
x

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

Re: Chemotherapy options

Postby karen17 » Wed Jul 24, 2013 9:02 pm

Oh Carole I am so saddened to hear your news. This damn disease is just so sneaky and cruel. Like Kate says don't give up on the idea of folfiranox as it does appear to be having some good results. It is very harsh though so best to make sure Clive is strong enough to tolerate it first. Do look into nanoknife too. We have been told that Bob is suitable for nanoknife but we will continue to explore other areas first.
Try to stay strong Carole and don't think twice about posting news whether good or bad. Its all about supporting each other whatever.
Sending big hug
Karen xxx

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

Re: Chemotherapy options

Postby Carole McGregor » Wed Aug 21, 2013 7:25 pm

Hi everyone

Thought I'd post a quick update to pass time at Princess Grace hospital while waiting for Clive to come back from theatre after Nanoknife procedure ! We've had a rubbish time since Clive's failed Whipple. Took him ages to recover from bypass and its only really since oncologist prescribed buscopan a few weeks ago that things have improved. His most recent scans from a few weeks ago showed no real change in tumour since the surgery which is great so we felt able to take the time to consult with various people on next steps. Tried to arrange Abraxane/Gemcetabine privately but consultant reluctant to take us on as we would be self funding (no medical insurance) and concerned that costs might escalate if there are complications. His suggestion was to get gemcetabine on NHS and Abraxane privately but NHS won't play ball. While waiting over two weeks for NHS to say so, pursued Nanoknife and here we are ! Plan now is to have standard chemo started next week on basis that it may be more effective as a result of Nanoknife. Need to do more research but presume this will be GemCap ? Won't do Folfirinox again just yet - we want to keep this at bay for as long as possible but Clive is much weaker than he was when he had Folfirinox at beginning ofthe year and we don't want to risk it. We celebrated our twins' 13th birthdays a couple of weeks ago with a lovely family meal out and want to have more good times like that while we can.

Have been reading all your posts. Laughing at holiday escapades, celebrating good news, crying when the worst happens but always comforted to know that I am not alone.

Much love
Carole

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Chemotherapy options

Postby J_T » Wed Aug 21, 2013 8:31 pm

Good luck with the nanoknife Carole!

We too, were refused to buy Abraxane privately with Gem on NHS! Infuriating!

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Chemotherapy options

Postby Slewis7313 » Tue Aug 27, 2013 9:05 am

Fi Carole, poor Clive really has been put 'through the mill' recently but hopefully Nanknofe will make a difference. Can I ask what Dr Leen is looking for / expecting as a sign of a good outcome for the Nanknife procedure. It is obviously relatively new and I think there are many people (myself included) who are really interested. My tumour has again been deemed inoperable after chemo / chemoradiotherapy and Nanoknife is one of the options at the top of my list.

Take care and best wishes to Clive

Steve

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

Re: Chemotherapy options

Postby Carole McGregor » Sun Sep 01, 2013 6:40 pm

Hi Steve

Proff Leen has been very honest. Nanoknife not a cure but hopefully will slow down progression of disease and extend life. He has only done 17 pancreatic tumours (loads on liver) so still early days though mentioned one patient has survived for 2 years post treatment. Big attraction for us was fact that he could deal with both primary tumour and liver mets, procedure relatively straightforward and to be honest, no one offering much else ! Clive did have a lot of pain post procedure which can happen but is now much better. In fact, said today that this is the best he has felt since failed Whipple back in May. Started chemo again last week (GemCap this time) and has been taking additional anti inflammatory painkillers so not sure what's made the difference - just grateful that it has happened.

Will keep you posted.
Cheers
Carole

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Chemotherapy options

Postby Slewis7313 » Sun Sep 01, 2013 7:36 pm

Thanks Carole, that's exactly what I needed to know. No guarantees with anything in this world, but you obviously hit it where you can! I'll continue to watch this space.

Take care

Steve

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

Re: Chemotherapy options

Postby Carole McGregor » Sat Oct 19, 2013 12:06 am

My dear friends

Clive's routine blood tests last week pre chemo showed low haemaglobin levels and so we were referred to local general hospital on Friday for a blood transfusion. We thought we would home in time for the kids coming back from school. A series of errors by hospital staff meant an 8 hour wait for the bloods to be made available. It was also decided that Clive needed antibiotics by IV which takes 24 hours and therefore required an overnight stay. Thats when our nightmare truly began. I watched him deteriorate over the weekend with a sense of rising panic. All the various doctors on duty that weekend did was order more blood and antibiotics although it was clear to me that it was making no difference. On Monday morning I contacted Clive's GP for help and arranged a private ambulance to take him home. Our amazing District nurses team then took over and could not have done more to care for him. I cuddled him throughout the night on Tuesday telling him about how I felt when we first met (love at first sight), reminding him of the wonderful things we had experienced together and talking about the amazing children he had brought into this world. He died peacefully in my arms on Wednesday morning.

He was an outstanding man - kind, gentle, funny and made me feel more loved than I had ever thought possible. Hannah and Jamie are like little lost souls, not sure how to feel or behave.

Thank you all for the support you have given me over the past year. I wish you strength to fight your personal battles and love to sustain you through the difficult times ahead.

Carole