Mum just started chemo - bad reaction

[Lupoo]

Hi all,

New to the group. My mum was diagnosed with Advanced Pancreatic Cancer a month ago, she went to the GP with a bad cough and they did a scan and found some secondary parts on her lungs when she went for the CT scan they said it was Pancreatic.

She saw Oncologist and they started her on Folfirinox last week, she had her first treatment on Tuesday.

I spoke to her yesterday as she had to go into hospital Saturday night as she had been vomiting, non-stop diarrhea, they have given her some fluids and antibiotics as her temp was just slightly up. Last I spoke to her this morning she was waiting for Consultant to come over from {Place name removed - moderator} today and talk to her, she is in hospital on the {Place name removed - moderator}. Just hoping everything is ok and she is able to come home today.

Is this a normal reaction to the chemo drugs? Will they do something to prevent this happening again?

My mum is 65 she lives on the {place name removed - moderator} but I live in {Place name removed - moderator} so can be stressful if not knowing what is happening!

Thanks for listening.

Lucy

[Didge]

Sorry to hear about your mum. With chemo, they never know how each person will react and there are many things they can give to lessen side effects once they know which ones a patient will have. Even though they can be distressing they often do not affect the treatment plan so hopefully they will sort your mum out and she will be able to continue. Didge x

[sandraW]

Hi Lucy,

Welcome to the forum, the place no one really wants to be, but where you will get lots of help and support.

Sorry your mum had such a bad reaction to her folfirinox, but as Didge says there is lots they can do to help, they may even reduce the dose to help with the side effects, or it might just be a one off.My husband had 23 lots in total and only had one really bad reaction, so they decided something else was going on at the same time, but some people do have bad reactions all the time unfortunately.

Let us know how your Mum is doing, and I hope she improves soon, take care sandrax

[PCUK Nurse Jeni]

Hi Lucy,

Welcome to the forums.

This is pretty normal for the combination of drugs your mum is on - one drug in particular, the Irinotecan, can cause terrible diarrhoea.

However, a person with pancreatic cancer can also get diarrhoea from a lack of pancreatic enzymes - do you know if your mum is on any of these? Probably called creon, as this is the most common brand?

If not, then its likely that she should be on them. It would be good to ask about this, in case the diarrhoea is also from there.

Don't hesitate to contact us on the support line email address should you need any further help.

Kind regards,

Jeni, Specialist Nurse.

[Lupoo]

Thanks for your replies all. She is still in hospital but they won't let her come home until her temperature has stabilised, they thought for a while it might be an infection but it looks now, as you say, just a reaction to the drugs. She has spoken to the oncologist and will see him again on Monday to discuss the treatment options. She feels like she can't do it if that is going to happen every 2 weeks, I explained they might be able to lower the dosage or do something to help so I think she is going to have a think over the weekend. I know they have started the injections of white blood cells again now as they hadn't been doing that over the last couple of days, I'm not sure the oncologist was overly happy about that! Tbh outside of him and the Macmillan Nurse I'm not overly confident they know what they're doing there! The Macmillan nurse has been very helpful and popped in to talk to mum a few times though so grateful for that.

Mum has never really been ill and only ever been in hospital when she had me and my sister so I think it is a lot to overcome at the moment. She is talking of quality of life over quantity of time, although I don't want her to die I don't want her to not be able to do anything either. It's a lot for me to take in at the moment too, I'm sure you've all been through the same thing! My dad passed away in 2013 from a heart attack so she is on her own now. We also lost my sister's partner to Bowel Cancer earlier this year so been a pretty tough time for us all.

I know she is a strong person (and stubborn!!) so I will support her in whatever she decides.

I know they have mentioned the Creons but I don't think she has been given any so I will mention it when I am back up there again today.

Thanks for your advice and I'll keep you updated.

Lucy

[Didge]

Thinking of you Lucy. It is a tough road and one only your mum can choose. But hopefully with a bit of tinkering she will get a decent quality of life and some extra time x

[Sueoliver]

Hi Lucy,I am sorry to read about your Mum. My Mum was diagnosed in May 2014 and the prognosis was 8-12 months but she is still here 18 months later! This is a hard journey and if I can help you in any way with any information or support please ask the nurses on here for my e mail address.

You can read my Mum's story under Mum's diagnosis!

Take care and stay strong,

Love Sue X

[Lupoo]

Thanks Sue. She saw the Oncologist today and he is going to try her on the Gemcitibine(?) instead but once she has recovered a bit. Today she was saying that she keeps getting the urge to urinate all the time but is not able to, is this a common symptom and can anyone suggest anything to do about this?

Thanks,

Lucy

[Sueoliver]

Hi Lucy,

There are so many different symptoms and problems with PC I would seek the advice of a DR if it carries on. My Mum has been the other way where it leaks from her so not sure about your Mum's problem!

Take Care,

Love Sue x

[Marieb]

Hi

Your mums symptoms sound a lot like mine first time. I too ended up in hospital after my 1st cycle with a suspected infection, really bad dtomach cramps etc.

It was scarey stuff at the time as the chemo pump was still attached and you just don't know what to do for the best.

The decided eventually that it was an adverse reaction to Irinotecan which I was subsequently taken off of after cycle 4, I reacted to it even in the clinic.

Since coming off that it has been much easier to cope with.

The creon really is the answer to the diarrhoea, the replace the lost function of the pancreas enzymes.

With PC it's all a bit trial and error as they find a drug regime tailored to each patient. I am now just finished cycle 8 of 12 and doing fairly well. I was given an original prognosis of 11 months, 5.5 months ago, I don't feel I am any where near being on my road out in that timescale.

Your last question about needing to pee but struggling, I had that too...strange sensation, I never got to the bottom of it other than my specialist nurse saying that the bowels and urinary tract function are so closely linked that a problem with one can knock the other one off. I tend to discuss issues with her rather than my GP as she is more specialist and my GP can seem a bit clueless at times. It just disappeared on its own, but I would get her discuss it with one of her team.

I wish you both well, this stuff is so scarey, especially at the beginning when you are grasping for information and trying to figure out who to go to for answers.

Take care and keep coming back here, we will help you all we can

Marie X

[Lupoo]

Hello,

My mum passed away on the 13th March just one day after her 66th birthday and 6 months after she was diagnosed. It was such a short time but I took the time to visit her lots and be there with her and I am really glad I did. She died in the hospice and they were absolutely wonderful there, she enjoyed her time in there too and got to know all the nurses and staff there, she was always bossing them about and enjoying banter with them! They all do such an amazing job and I'm glad she was in such a comfortable, relaxed environment when she passed. In a way it was a blessing as she was in so much pain, the Doctor was amazed at how strong she had been and how she had been able to carry on given the extent of her cancer. In the end it spread to her hip bone and travelled up the spinal fluid into the brain which was when they knew there was little time left, luckily I had spent the previous weekend with mum as when we arrived at the hospice she was not able to really communicate with us although she was aware we were there. I focussed instead on the weekend we had spent together on Mother's Day eating cake It is such a horrible disease and agonising for the person and family to go through, I really hope more can be gone in the future to help fight this illness. Xxxx

[sandraW]

Hi Lucy,

So sorry to hear you have lost your mum to this truly dreadful disease, she sounds like a lovely lady, and it nice to hear she had such good care, Hospices are truly amazing places, sad to hear she had so much pain.

I'm glad your Mothers Day memories are so fond, those are the memories to hang onto, and let the memories of that last weekend fade away. sending love and strength to you and your family, take care sandrax

Edited April 7, 2016 by sandraW

[boa]

Lupoo

Sorry to hear of your Mother's passing but pleased that she was content in the hospice and enjoyed banter. Hospices are marvellous. Good too that you enjoyed time together. All cancers are horrible but PC is particularly nasty. Like you I hope the future brings a better understanding of the disease and longer survival times

Catherine

[PCUK Nurse Rachel C]

Dear Lupoo,

I am so sorry to hear this sad news.

On behalf of everyone at Pancreatic Cancer UK I would like to offer our heartfelt condolences. Our thoughts are with you and your family during this very difficult time.

From all the support team,

Rachel

Pancreatic Cancer Specialist Nurse

Support and Information Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Proud Wife]

Hello Lucy

I am so very sorry to hear your news. My sincerest condolences to all of your family. xx

[Lupoo]

Thanks everyone, we had a lovely funeral service on the 30th even though the priest turned up late I think mum would have laughed at that! I still see things and think I must call her to tell her about that and then remember but I spoke to my mum all the time on the phone so I guess that will happen for a while. She is with my dad now and I'll always miss them but I'm glad she does not have to suffer anymore. Thank you all for your comments. Xxx