A forum for family, friends and carers of pancreatic cancer patients

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PCUK Nurse Dianne
Posts: 283
Joined: Tue Aug 14, 2012 3:29 pm

Re: Concerned husband

Postby PCUK Nurse Dianne » Fri May 11, 2018 9:45 am

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
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Tue May 22, 2018 9:00 am

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
Posts: 45
Joined: Thu Jan 25, 2018 10:52 am

Re: Concerned husband

Postby PCUK Nurse Rachel R » Tue May 22, 2018 3:41 pm

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-c ... pread-polo

https://www.clinicaltrials.gov/ct2/show ... =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
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Concerned husband

Postby Veema » Tue May 22, 2018 8:26 pm

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
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Fri Jun 15, 2018 7:58 am

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
Posts: 1055
Joined: Mon Jun 14, 2010 1:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Fri Jun 15, 2018 3:34 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Concerned husband

Postby Proud Wife » Mon Jun 18, 2018 6:57 pm

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

Saxon
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Tue Jun 26, 2018 12:12 pm

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
Posts: 1055
Joined: Mon Jun 14, 2010 1:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Tue Jun 26, 2018 12:25 pm

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
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Mon Jul 09, 2018 11:44 am

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
Posts: 283
Joined: Tue Aug 14, 2012 3:29 pm

Re: Concerned husband

Postby PCUK Nurse Dianne » Tue Jul 10, 2018 4:51 pm

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
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Wed Feb 06, 2019 1:55 pm

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
Posts: 1055
Joined: Mon Jun 14, 2010 1:30 pm

Re: Concerned husband

Postby PCUK Nurse Jeni » Thu Feb 07, 2019 3:55 pm

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
Posts: 24
Joined: Mon Jan 15, 2018 8:35 am

Re: Concerned husband

Postby Saxon » Fri Feb 08, 2019 2:18 pm

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
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Concerned husband

Postby Proud Wife » Fri Feb 08, 2019 6:10 pm

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