Chemotherapy options

[J_T]

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]

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]

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

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]

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]

Hi everyone

Thought I'd post a quick update to pass time at 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]

Good luck with the nanoknife Carole!

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

[Slewis7313]

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]

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]

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]

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

[J_T]

Oh my dear Carole I'm so sorry you have lost your wonderful Clive and for it to be preceded by all those errors must be hard to bear. I am so glad though that you managed to get him home into a loving environment.

I can't quite believe we have lost yet another great man in such a short space of time, first Karen's wonderful Bob, then my darling Ray and now your much loved Clive. This really is the most horrendous of diseases.

I am sending much love and know that there are those of us in the forum family that know exactly what you are going through.

Be kind to yourself.

Julia xxx

[Cathy]

Oh Carole,

I am so so sorry to hear your terrible news. And so quickly as well!! My heart breaks for you and your children.

Clive fought a brave fight and I hope that you can get comfort that he died peacefully with you. I cannot imagine how you must feel.

I am thinking of you, Hannah and Jamie and hope that you can take comfort from all the love and support that people will, I am sure undoubtedly offer you in bucketloads, including from your forum family here.

We are thinking of you Carole

Much love

Cathy xxxxx

[belgrade]

Carole,

I am so sorry to hear to hear about your husband. I've been reading your posts since I started using this forum and Clive has been through so much in this awful fight. My thoughts are with you and your children.

Hilary x

[Bee]

Carole,

I am so sorry to hear of your loss,. It sounds like you had a truly awful weekend aswell before you brought him home, I am glad that you managed to bring him home and you managed to say the things you wanted to.

As for your children, I have 12 and 14 year old so can really identify with your situation. I hope you have lots of support around you and am sure you and your children will look after one another.

Take care

Bee xx

[Slewis7313]

Carole, I am so sorry to hear that Clive lost his battle with Pancreatic Cancer and that the system seemed to let him down when needed most. It was good to see that you recognized what was happening and you moved him to the place he obviously loved for his final days. Thanks for the help you have given me and others along your all too short journey and I will be thinking about you and your family over this very difficult period.

Take care

Steve

X

[J_T]

Hilary lost her dear Dave recently too, we have had a lot of sadness all at once it seems

Carole, it must be so hard for your twins too.

I'm sending love to each and every one of you in our forum family

Julia xxx

[nikkis]

So sorry to hear you and Clive have lost the fight against this ghastly disease. It must have been hard getting things organised to get him home, its fantastic that you had the courage and strength to do this.

Thinking of you and your children,

Nikki

[cestrian]

Dear Carol

So very sorry to hear of your sad loss, please accept my sincere condolences. So very sad to see another brave man losing the battle.

My love and prayers go out to you and the twins, I'm sure you will be a great source of love and strength to each other in these very difficult days and may your God walk with you.

Love and Peace

Mike

[Jwilson]

Carole. Sincere sympathies to you and your family. It seems that you had a horrendous time and dreadful treatment. Poor Clive and poor you. You made a very very brave decision to bring him home and you must be really glad that you did. So much kinder than in a hospital bed. Thank you for sharing all of this with us on the forum. It's a great support for those suffering this awful thing and their partners. Wishing you strength to get through the next dark days.

June x

[Dfarmer]

Thinking of you Carole. I'm pleased you managed to get Clive home which I know you'll take comfort from.

Dawn

X

[InfoForMum]

Carole, I've dipped in and out of your story to date, having started my own journey with Mum in mid August. I just wanted to add my thoughts to those of others. I know I dread dealing with the reaction of my children to losing their grandma almost more than I dread dealing with my own feelings. I can't conceive of the deep hurt you are going through watching your children starting to try and make sense of this. Please do get in touch with Macmillan as I've been told by a close friend that they were amazing with her young teenage children and provided lots of support to her in helping them deal.

Most importantly please make sure you get looked after by anyone you trust to invite in. More one day at a time. So sorry you have all this to deal with thanks to this bastard thing, but do come and vent, share, mull over events or whatever.

Take care

Sarah

XXX

[Sueba]

Carole

I really don't know what to say.......

Even though we have never met we have emailed each other over the last year and we have followed each other's up and downs etc we've had a laugh and I've always admired your sense of humour in awful situations.

It was obvious what a lovely man Clive was and how you have always fought his corner ,he must have been so proud of his lovely wife!

I can't imagine what you are going through and Jamie and Hannah (the same age as my youngest)well my heart just breaks....

Take comfort that you could tell him everything you needed to and a I wish I could be there to give you a hug.

Thinking about you and sending you strength

Love

Sue

Xxxx

[Birchen]

Carole

So very sorry that you have lost your much loved husband. Have read your posts since my husband was diagnosed in June. No words can cover how you must be feeling.

thinking of you and your family

Lyn x

[Carole McGregor]

Oh you lovely, lovely people. Thank you so much for your kind words. That you can find the time to offer comfort to someone you have never met in the midst of your own personal crisis leaves me speechless.

I'm not sure how I feel right now. Lots going on with people coming and going, funeral arrangements to be made, questions to ask about Clive's care but all the time feeling like I am living in a parallel universe not really connected to the real world. I do know I feel anger. My amazing sister (who Clive always said he would marry if I ever stepped out of line), registered Clive's death for me. When the registrar saw the cause of death she sighed and said how she had been discussing with a colleague just the other day, how many more deaths they had seen in recent years due to pancreatic cancer and in much younger people than before. It is a national disgrace. I have set up a web page on Just Giving for Clive to help raise funds in lieu of flowers. Don't any of you dare make a donation - this is for others to show their support for our battle - but you might want to have a look at the pictures of my gorgeous husband at his best. Those are the images of Clive I will hold in my heart forever more.

Sue - you give Mick and those lovely boys of yours a special hug from me.

Carole xxx

[J_T]

Carole, I can empathise with every word you have written, its just all so familiar.

I too, am focussing on old photos and trying to remember the healthy, full of life Ray pre illness.

Clive would be so proud of you. Do take care of yourself.

Wishing you the strength to get through the difficult days ahead.

Love

Julia xxx