Folfirinox and effects

[Brian]

Hi,

Michelle was put forward for a clinical trial but this entailed eating a vast fatty breakfast, which I would struggle to eat and the Professor said would be too much for him, and take about 20 tablets a day. So it really wasn't suitable for Michelle.

Michelle then developed a large blood clot running the length of the Portacath tube across her chest, this resulted in the swelling of her face and neck and breathlessness and as a result I had to call the paramedics and she was admitted to hospital and when she was discharged she has to have a daily injection of blood thinner by the District Nurses.

It was then suggested by her Oncologist to come off the Filfirinox and start Chemotherapy of Carboplatin. She has had 2 sessions of Carboplatin and this has been less rigorous for her and she hasn't been vomiting.

Does anyone else know of Carboplatin?

Brian

[Cathy]

Hi Brian

Nice to hear from you again. It sounds like Michelle is doing ok by and large? You may have gathered if you have been keeping a track of this forum that blood clotting is a fairly common occurrence in pancreatic cancer. Jonathan had one as have a number of the others. If you felt you wanted the freedom from the district nurses each day and you were feeling confident, you could give Michelle the injections yourself. It's quite straightforward to do. The nurses would probably show you if you asked them.

There is a link here with info about the drug Michelle is on.

http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Individualdrugs/Carboplatin.aspx

It's a platinum based drug and I know from our experience that one of the possible side effect, tingling in fingers and toes, can be cumulative. Now the weather is getting cooler Michelle might benefit from nice warm gloves and socks.

Is this still a trial? I ask as I couldn't find anything much in relation to pancreatic cancer although have read somewhere that there was a bit of a move towards using a breast cancer chemotherapy drug for PC.

Keep us posted and I do hope that this suits Michelle more and that she does well on it.

Kind regards

Cathy xx

[Brian]

Dear all, Michelle developed an infection and became jaundiced on Thursday 24th October and urgently had to be admitted to Accident and Emergency for intravenous antibiotics and fluids. She was stabilised and scheduled to have a stent fitted on Tuesday 29th October. However, Michelle's veins collapsed and she was in pain as they attempted to insert lines for platelets. They were unsuccessful and when I visited that morning the nurse and doctor advised me of the situation and it was agreed that all medical care would stop and Michelle would be made comfortable. I spoke to Michelle and told her that there would be no more taking of blood, no more needles or pain and she immediately became more relaxed and relieved.

She had visits from family and friends and was able to smile and laugh again for the first time in 7 months as we recounted happy memories. Michelle gave a final smile and then passed away in the afternoon on Tuesday 5th November with myself and our two children present.

Michelle was a wonderful, courageous and strong woman who fought so hard to beat this horrible disease and even though she twice overcame breast cancer having had a lumpectomy and a mastectomy in the past 15 years, she couldn't beat pancreatic cancer.

My thanks to everyone on the forum for their support over these long and difficult six months.

Regards

Brian

[Bee]

Hi Brian,

So sorry to hear of your loss, but it sounds like Michelle was calm and relaxed with her family by her side which is lovely. I wish you well and hope you all have lots of support around you.

Take care

Bee x

[J_T]

Dear Brian, I am so sad to hear of your loss. I know Michelle had a difficult time during her illness and I know how hard it is to watch the person you love suffer so much. May she rest in peace.

So many have left us recently, its just too sad.

Much love to you and your children.

Julia x

[belgrade]

Hello Brian,

I am so sorry to hear about your wife and understand how you feel, having lost my husband to this awful disease just two months ago. My thoughts are with you and your family.

Take care,

Hilary

[nikkis]

Hi Brian,

So sorry to hear that Michelle has lost her fight against this vile disease. Hope it is a comfort to you that you were with her at the end and she passed away peacefully. Thinking of you and your family,

Nikki

[Brian]

Many thanks Bee,Julia, Hilary and Nikki for your kind words.

Brian

[J_T]

Brian hope you are doing okay and have support around you. Tough times.

All the very best

Julia x

[Cathy]

Hi Brian

I am so sorry and sad to hear that Michelle lost her brave battle.

it does sound though that you enjoyed some peaceful and special moments with her before she passed away and I do hope that that offers some comfort for you now.

Thinking of you

Cathy xx

[Brian]

At Michelle's funeral on saturday, we asked everyone to wear something pink or purple to raise awareness of research into breast and pancreatic cancer. Over 250 family, friends, neighbours, work colleagues turned up to pay respect to Michelle.

All of them remembered her as a caring, friendly, strong woman with a cheery smile and a kind word for everyone. At the funeral service my daughter Lynsey and son Andrew found the strength to stand-up and tell of happy memories of their mum. I also was able to say some words and read verses from the poem called 'You'...I think Michelle lifted me out of my seat and was there beside me at the lectern.

Lynsey has set up a 'Giving page' for raising funds for Pancreatic cancer research and it's already at £900.

Brian

[J_T]

That sounds wonderful Brian. Don't how you and your children found the strength to stand up and speak, how lovely.

Well done on the Just Giving to. We raised quite a bit at Ray's funeral and I've been told more donations have been made since.

Best wishes

Julia x

[nikkis]

That is a lot of people who cared about Michelle. I am sure that is a great comfort to you. Glad the funeral went so well. You must have been so proud of your children and Michelle would have been too. They sound like a credit to you both.

Take care Brian,

Nikki

[PCUK Nurse Jeni]

Dear Brian,

We are very sorry to hear of the passing of Michelle.

On behalf of the charity, please accept our sincere condolences.

It sounds as though the funeral was lovely, and that the family did a great job - well done in such hard circumstances.

Kind regards,

Jeni.

[Parker]

Hmmm reading a few standard responses to this on here, just had my 43rd treatment with the inclusion of oxaliplatin again due to changes in number and size of lung metastases. My initial dose 85mg was reduced to 50mg and stopped after 9 due to neuropathy. Disease remained stable for over 12months. In answer to an earlier question could I recommend 1 dose reduction and 2 definitely lengthen the intravenous to max. This does help but I'm now on the Saturday following folflouracil bottle removal on Friday. I choose not to take steroids due their affect on sleep, ie non, except for the treatment on a Wed's but after 43 it is beginning to take its toll on recovery.... It'll be 2yrs since diagnosis in July and obviously it has proven difficult but I can only recommend the above and crack on as best you can.... There simply is little alternative other than pack in and give up..... I'm still pushing hard Rock climbing as I have most of my life and try to get 10 days out of 14 but the Wed's > Saturday, taste, appetite, fluid intake is testing to say the least...however I now fear that the disease is beginning to take over what is left..... Grim but grateful to at least get into my 60s...

Regards to all....