Concerned husband

[Saxon]

Update.

Sticking with the folfirinox and she will be having another scan after the next treatment. Her normal consultant agrees that as the symptoms are reducing and tumour markers coming down, it must be working.

Everyone is excited as genetic tests have shown that she has the BRC A genetic mutation and it is thought that this caused her breast cancer 10 years ago and the current PC. Apparently there are other treatments that might be effective, but we would have to fund these at £4K a month.

Would this be immunotherapy - I couldn't make the appointment as tied up at work?

[Justamo]

Was this appointment very unexpected Saxon ? Shame you couldn't get away from work to attend it.

Mo.

[PCUK Nurse Jeni]

Hello Saxon,

That's good news to hear that your wife is to carry on with the folfirinox. It seems sensible to carry on if she is clinically improving and that the tumour markers are reducing - it indicates there is a response, which is good.

Not sure what the drugs might be - do you have a name at all Saxon?

If not, don't worry, maybe your can ask at the next appointment, or if you are unable to make it, you could get your wife to ask about them, and get the name written down? Might they be available on a clinical trial at all perhaps?

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

Jeni,

Thanks, will ask at next appointment.

The consultant did say that it's not currently part of a clinical trial.

[Saxon]

My wife had her latest treatment yesterday. Just had a nurse led consultation. She is now having to have an anti histamine drip as having allergic reactions to the chemo, but it all went well.

The plan is for a scan next week to see what the treatment is doing. All things going well, she is being put forward for a PARP inhibitor. Apparently the specific drug is new and only being tested in the USA.

Does this sound right?

She also has to complete another 3 chemo cycles and be shown to have the chemo working as I understand things.

Saxon

[PCUK Nurse Dianne]

Good morning Saxon,

Good to hear that your wife has been able to continue on treatment and I am sure she may be looking forward to a short break from chemotherapy, maybe an opportunity to have some time away from hospitals and all that it involves.

If you have any further information about the PARP inhibitor, please do come back to us and we can do some research for you, there are quite a few research trials taking place, so it is a little difficult to appreciate exactly what this is at present.

Hopefully you are able to enjoy the lovely weather and a 'chemo break' for a while Saxon whilst waiting for CT scan results, of course we all understand this can also be an anxious time.

All best wishes,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

Support Phone line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[Saxon]

Morning!

We've had some good news back from the latest scan results. They are now showing a 25% reduction in the main tumour and some reduction in the secondary's on the liver. This means that she is now eligible for the PARP inhibitor trial - I've been sent a link from this site and it is the POLO one - it's the Olaparib drug? Anything further than what's on the link would be appreciated.

It is a blind placebo trial with a 3:2 ratio - as we've been led to believe. We are also investigating the opportunities to fund this drug ourselves to ensure that we get the real drug and not the chalk alternative.

She's developed an allergy to one of the chemo drugs and has been suffering with nausea, so is being prescribed more steroids both pre and post chemo to counteract these effects. she's having to set alarms on her phone to remind her which drugs to take and when as there are now so many.

[PCUK Nurse Rachel R]

Hi Saxon

That is great news to hear. You must both be extremely pleased with that outcome.

In terms of the POLO trial I have a couple of other links here for you to look at. I wasn't sure if you have seen these. To be honest there is probably not a great deal more information contained within them but they may be useful. It would be good to possibly touch base with one of the contacts contained in the links if you have further specific questions.

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-olaparib-for-pancreatic-cancer-that-has-spread-polo

https://www.clinicaltrials.gov/ct2/show/NCT02184195?term=olaparib&cond=Pancreatic+cancer&cntry=GB&rank=2

You are also very welcome to call support line to talk through any other queries, the telephone number is in the signature below.

With kindest wishes

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Veema]

Great news that the tumours are reducing...but I have to say, that good as trials are, I wouldn't want to risk getting the placebo, especially as the chemo she is currently on seems to be working well.

Good luck with whatever you decide.

Vx

[Saxon]

Thanks for the responses. Not been in a good place recently, so not been logging on much.

My wife has 1 chemo treatment left out of 12. It's really taking it's toll on her, so will be glad to finish that. The tumour markers have gone up again a little (we don't get told the actual figures so that we don't obsess over them) and my wife has been getting some of the original symptoms back, so like everyone says we're riding that roller coaster.

We have an appointment to see the specialists and discuss the parp inhibitors in the next few weeks, so will have to wait and see what the results of that are.

[PCUK Nurse Jeni]

Hello Saxon,

Thanks for the update.

Sorry to hear things are not great at the moment. Your wife has done amazingly to tolerate the chemo so far - it gets tougher as the cycles go on.

I am sure that once that is finished, they will do an updated CT scan.

I hope the appointment goes well next week.

Please do not hesitate to contact us if we can help at all.

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Proud Wife]

Good luck to you and your wife Saxon for your appointment with the specialists x

[Saxon]

Afternoon,

Just a quick question. My wife has now complete her chemo sessions and is starting her recovery from the side effects of that.

She is suffering quite badly from numbness in her fingers and feet, we knew that this was a side effect. Do you know how long this will take to recover, or is it very much dependent on the individual?

Saxon

[PCUK Nurse Jeni]

Hello Saxon,

Thanks for your query.

It is very much dependant on the severity of the issue in the first place - for example, if it was only present when handling something cold, then its less severe. However, if it was present all of the time, even when not touching anything cold, this is more severe.

However, once the chemo is withdrawn which causes this, hopefully, the condition should improve. However, it may and can take several months before this happens.

The key is to note any differences in her symptoms and keep a record of this - ie: you should be noticing an improvement over time. If this is not the case, it would be good to discuss this with her oncologist at her follow up appointment.

Kind regards,

Jeni.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

Morning!

Another recovery based question

My wife has been accepted onto the Parp inhibitor trial, but her platelet levels need to be over 100 and they are currently around 75. Assuming that this is a side effect of th chemo, is their recovery period quick or slow or does it depend on the individual?

Saxon

[PCUK Nurse Dianne]

Good afternoon Saxon,

thank you for your question, always welcome. Saxon it may be that your wife's platelets will continue to increase as she has completed her previous chemotherapy in recent weeks. I wonder how frequently these are being checked on bloods, and are you able to see a steady incline in these over the last few weeks?

In general you will find this depends on the individual, however if you are able to look back over most recent bloods you may find that this is slowly increasing and give you some reassurance that they are moving in the right direction.

It is good to hear that your Wife has been given some additional treatment options, and I wondered if you have had a conversation with the trial team about time frames for the trial, ie how soon after previous treatments she is able to commence chemotherapy.

I hope that helps Saxon and of course be in touch as you need.

Kind regards,

Dianne

Pancreatic cancer specialist nurse

Pancreatic Cancer UK

Support phone line: 0808 801 0707

Email: nurse@pancreaticcancer.org.uk

[Saxon]

Not posted for a while.

Whoever thought of comparing this journey to a roller coaster ride couldn't have hit the nail on the head more precisely.

My wife got the trial parp inhibitor drug and started back in August 2018. Things went well, she regained her normal self after the Folfirinox and returned to work. A scan showed that the tumours had shrunk compared to the ones taken after the Folfirinox was finished. However, the tumour markers started going up and the pain returned. In October another routine scan showed that the liver tumours were once again growing and as such she was removed from the trial.

She returned to the oncologist who immediately put her on Gemcitabine, with intravenous courses once a week for 3 weeks, with daily chemo tablets and then a weeks respite. The side effects were not too severe, so she kept on working. We then found out that when she was on the drug trial she was actually on the placebo, not the drug, so in some ways it was good that she came off it so quickly.

Since Christmas the pain has been getting worse and she ended up being admitted to hospital last week so that they could address the medication to help with pain relief and the sickness. She had a scan at the same time and the overall conclusion was that the cancer has progressed and the pain is being caused by a growth in or against the celiac axis.

In the meantime, the oncologist has managed to get a drug company to agree to provide the actual parp inhibitor from the trial she was involved with on compassionate grounds, so he has stopped the gemcitabine chemo and should be starting the drug imminently.

My wife is coping as best she can, but has recently been getting quite down, as everything she is going through doesn't seem to be helping - particularly when the pain is so extreme. There is nothing that we can do to assist her when that happens, apart from continuing to be there for her and support her as much as we can. I know that it is hard for her and I don't want to sound selfish, but sometimes I don't know if I'm ringed, bored or punched as not sure if I'll come home and find her curled up in a ball of pain or out with her friends as she's feeling OK.

I don't have any questions, but just wanted to share. It's been up and down so many times and in the last few weeks it's been hard to cope whilst trying to maintain some form of normality for the children.

[PCUK Nurse Jeni]

Hello saxon,

Thanks for the update.

A lot has been going on.

Just wondering, where is the main pain which your wife is suffering from? And what medication is she on currently to help her?

If you prefer, you can email us directly, and perhaps we might be able to offer a few suggestions?

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

Jeni,

My wife's pain moves around, but can be in the upper stomach and then in her back on either side. The oncologist says it's to do with the celiac axis being affected. They're talking about doing something to anaesthetise the celiac access.

As well as pain medication (cocodamol and oramorph), my wife uses heat blankets/hot bean bags and rubbing the affected area can help, although sometimes nothing seems to touch the pain for hours on end.

Any advice would be welcome.

[Proud Wife]

Hello Saxon

I'm so sorry to hear of the pain your wife is suffering. I don't normally post any more but I always found a Friday evening ahead of a long weekend a very lonely place when my hubby was suffering. Therefore, I'd like to share our experience...

Whilst I am no doctor, I'm a little surprised she's not been prescribed a slow release morphine tablet or the like. Its so important that your wife is able to keep on top of her pain and then use the likes of co-codamol and oramorph for "breakthrough" pain otherwise it can become harder to control. As I said before, I have no medical qualifications whatsoever but can only tell you how my husband's pain was treated. Every patient is different of course but the 2 medications you have mentioned were used by my husband simply as top ups for the breakthrough pain in addition to the slow release morphine tablets he was taking twice (if I remember correctly) daily. Ask for referral to pain management specialist perhaps?

In the meantime, keep a track of how much oramorph your wife is taking on a daily basis, I believe that helps doctors determine start dosage of slow release morphine.

All the very best to you and your wife

Proud Wife (I still am and always will be) x

[PCUK Nurse Jeni]

Hi Saxon,

I will email you.

KR,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

It’s been a very up and down few weeks since I last posted.

My wife finally started the parp inhibitor drug and has been on that for 4 weeks. In the meantime the pain management initially improved and then went down hill together with a loss of appetite and increased sickness. The sickness got so bad that the other week I took her to hospital where she was admitted for a potential stomach blockage. They couldn’t find anything, but after having a stomach drain in and then increasingly stronger laxatives together with steroids, they got things going enough to let her home last Thursday on a strict diet of no roughage and having foods blended.

She was also told during this stay that a recent scan has shown further progression of the secondary liver tumours. As a result of this she is now being taken off the parp inhibitor and put onto another chemo treatment – carboplatin.

Chemo should have started on Monday, but after being discharged she spent all her time in bed in pain and also she started to get very bloated – she looks like she is 7 months pregnant. She felt like she was going to burst. So took her back to hospital on the Monday where she has been re-admitted. The swelling is due to the tumours producing fluid and this being retained around her stomach.

She was also told that she couldn’t have chemo until they’d drained the fluids and her platelet levels had improved as were lower than 75. They did a blood test in the morning and this showed that the platelet levels are now below 10, so they cannot do the drain or the chemo. She has had a platelet infusion and now waiting for the platelet levels to pick up.

She is very low. The see saw of being in pain and then no pain, being sick and then constipated, the swelling and then bad news on the tumours and platelets and now being stuck in hospital has depleted her spirits.

I’m sure that there’s loads of you out there with similar and worse experiences, but it just gets hard to cope for all of us as well as my wife.

[PCUK Nurse Nicola]

Hi Saxon,

Its Nicci here, one of the nurses on the support line. Saxon I am so sorry to hear that your wife has been re-admitted into hospital. It must be very difficult for you to see her feeling so low in mood and struggling with all these symptoms.

Saxon I will email you directly to discuss this in more detail, I hope that’s okay.

Kind Regards

Nicci

Nicci Murphy

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Saxon]

Just to let you know that my wife sadly succumbed to complications related to her pancreatic cancer on 29th March 2019. The end was quite sudden, with being admitted to hospital on the Monday and everyday there was a plan to take some action to address her ailments, but on the Friday morning, with her being uncomfortable, in pain and suffering from the other complications; we were told to think short days. She was given oxygen and pain relief and slipped away just over 4 hours later surrounded by her mother, sister, son, daughter and me (her husband).

From being diagnosed 16 months ago and being told to think months not years, she has fought valiantly and the time she had was spent doing the things she loved and being with family.

She will be greatly missed by all of us.

[PCUK Nurse Jeni]

Dear Saxon,

We are so sorry to hear of this news about your wife. We are all sending our condolences and best wishes at this sad time. It sounds as though it was quite sudden - I hope that you and the family were well supported. It is good that your wife was surrounded by all those who meant so much to her.

Thank you also Saxon for being a regular part of the forum family, and for your support to others on here.

Thinking of you and the family.

Jeni & all the nurses.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707