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PCUK Nurse Jeni
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Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Mon Feb 22, 2016 1:15 pm

Thanks folks.

This has been taken care of last week.

Jeni.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Mon Feb 29, 2016 5:01 pm

I hope everyone is doing as well as they possibly can on the forum. I have just had my CA-19 marker readings after my 4th Folfirinox and they have gone from 390 at start of treatment to 280 after 2nd treatment and 96 after 4th!! I know they are only part of the picture but after 4 months of having no good news at all it's a nugget!

I have just had 5th chemo today and now sat resting on sofa in front of fire. This will be the first chemotherapy without the 5 day steroids so will be bit of a test to see how I get on. I've been given some additional anti sickness tablets so these will hopefully help and I've started having acupuncture and have been given some anti sickness wrist bands. I've managed to keep well in between treatments so far and have continued to cycle. We keep making the most of our holiday home in Spain in between treatments and just having sunshine has been such a bonus.

I've been meaning to change my car for a while now and have been looking at fiesta's. One came up with what I want color and feature wise. Interestingly the registration was CA then finished with PC!!

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby sandraW » Mon Feb 29, 2016 6:04 pm

Hi Ruth,
It must be a sign, great news on the CA19's too.
As I mentioned in a previous post Trevor didn't have the steroids and managed fine so fingers crossed you will too, he never used any anti sickness either, apart from the one time he had a bad reaction, but the consultant was convinced, as was I, that there was something else going on at the time, fingers crossed, very tightly, that you will be fine, and back on that bike. take care sandrax xx

Wife&Mum
Posts: 397
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Re: Mum of 42 recently diagnosed inoperable PC

Postby Wife&Mum » Tue Mar 01, 2016 5:40 pm

Wow Ruth, great to hear that your markers have gone down so dramatically - suggests that Folfirinox is doing its job really well!
I hope too that you're feeling fine without the steroids.
Take care
xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu Mar 03, 2016 10:53 am

Thanks Wife and Mum

I've been feeling pretty wiped out after this 5th chemo and no steroids. I've been sleeping a lot the past few days but this might also be influenced by being prescribed another strong anti emetic which can make feel more drowsy. I'm starting to come around again now and will see how I get on the next few days.

How are things with you and your husbands recovery?
Ruth x

Proud Wife
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Joined: Sun Jan 17, 2016 9:28 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Thu Mar 03, 2016 1:32 pm

Hi Ruth

Really, really pleased to hear the fantastic news on your CA19.9 markers. To me, that definitely means you are responding to treatment. Not long now to your scan which will hopefully give you a further boost. Are you finding the tiredness/sleepiness easy to cope with than the steroids?

In the meantime, just listen to your body and sleep when you need to sleep.

Take it easy
PW xx

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Mon Mar 28, 2016 1:29 pm

I have not been on the forum for a while and thought I would just post a little update.

I had my mid treatment CT scan on Thursday last week. I won't get the results for a few weeks as the Consultant said the scan needs reporting on and then they need to discuss my case in the MDTM which happens on a Wednesday. I doubt all of that would have happened by this Wednesday due to the long Easter weekend, so it sounds like my results and case will be discussed in the Wed 6th of April meeting.

Well, it's been a disappointing morning for me today. I was due to have my 7th cycle of Folfirinox today but at my review on Thursday my neutrophils were only 1.1. The hope was they would have increased to 1.5 or above by today. We got to the hospital at 8 a.m. I had my bloods taken at 9 a.m and we waited for the results over the next hour. My name was called out to go up to the treatment centre and I had my hopes that that this meant my bloods were ok and the 7th cycle would go ahead today, however the nurse on the ward told me that although my WCC had recovered really well since my 6th cycle, my neutrophils were 1.3 and although borderline it's deemed too risky for treatment to go ahead as Folfirinox is so toxic. Treatment has been deferred to next Monday.

I felt really disappointed as I had really wanted to have the treatment today for a few reasons. The first reason being to just get it out of the way, the second reason being we are going to our place in Spain on Thursday and had hoped to stay until the Wednesday, which would have meant an escape until my next review on the Thursday. We will have to come back on the Sunday night now. The third reason being I just don't like having to go to the hospital! But then who does!

The nurse said that so far I have tolerated treatment really well and I am a bit of a wonder woman in how well I have tolerated it, but as my neutrophils haven't been right on two occasions now she will discuss whether the dose needs to be reduced and altered with the Consultant tomorrow. She said it was very common for dosages to be adjusted and most don't make it through the 12 treatments without some alterations in dosage. We suggested whether 3 weekly treatment would be an option and keep the dose the same, as this would give my body time to recover and also longer in between treatment to feel well and do things. She said this could be a possibility and to discuss with the Consultant so we will have to wait and see.

I am feeling ok about this now and will make plans over the next few days whilst feeling well and will also look to a shorter but lovely break in Spain.

Ruth

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby MSH » Mon Mar 28, 2016 2:17 pm

It is so frustrating when treatment is postponed particularly when it impacts on travel plans. It was always my neutrophils which prevented treatment with Folfirinox. During my first course I was given Neulasta which boosts the neutrophil count. This allowed me to have treatment on schedule and prevented any further infection,(I had a fever probably secondary to an infected stent after the very first cycle). In fact I've seen it argued that anyone with a stent should have something like Neulasta whilst having Folfirinox. During my second course, treatment was every 3 or 4 weeks as they wouldn't use Neulasta again. I still had episodes of grade 4 neutropenia (<0.5) but escaped infections as my stent had disappeared.

The plus side of delayed treatment is that you have an extra "good" week so enjoy your time in the sunshine.

Mark

Proud Wife
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Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Mon Mar 28, 2016 2:26 pm

Hello Ruth

Good to hear from you.

You haven't mentioned how you got on without having steroids? Personally, I think it's a good idea that you have folfirinox every 3 weeks as I mentioned before because it did allow my husband time to recover and he managed the whole 12 cycles, although Oxyliplatin (forgive spelling) was removed after cycle 8 or 9 due to neuropathy. I would however, recommend that you keep a close eye on your CA19.9 markers.

Looking back now at my hubby's scans and blood results with the information that we now have, progression must have started before cycle 12 had been completed although to what extent I don't know. All I do know is that he had cycle 12 in January and by scan last week, further spread has been significant between January and now. Now, we will never know if that's just natural progression or was it because treatments were spaced out longer than recommended.

It's just such a hard balance, risk -v- reward and only you can decide what works best for you and your life style. 3 -4 weeks between treatments allowed us to have a good few holidays which I strongly believe has helped my husband's physical condition and enabled him to endure all 12 cycles. I can understand why you would want to escape to you place in Spain whenever you can! xxx

Proud Wife
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Joined: Sun Jan 17, 2016 9:28 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Mon Mar 28, 2016 2:36 pm

Was there a specific reason why you were not given neulasta during your second round of treatment Mark? Initially when hubby was having folfirinox fortnightly, he had a neulasta injection every other treatment. Once he changed it to every 3 weeks, he was told he needed a neulasta after every single cycle.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Mon Mar 28, 2016 3:45 pm

Is neulasta the same as the Filgrastin injections Mark? I take the Filgrastin injections for 5 days post chemo. One thought as crossed my mind today and that is each time I have my review I am weighed fully clothed and with boots on. Last time I was weighed on the hospital scales I was 9 and a half stone but when I weighed myself at home without clothes I was only 9 stone. I know they work out dose according to weight so think I need to brink this up with my Consultant.

PW - I am sorry to hear of your husbands progression. I hope he is managing to have quality time still. In answer to how am I doing without steroids,...I am definitely more tired and sickly for a few days following the chemo but am managing this with sleeping and taking a stronger anti emetic. I seem to pick up on day 4-5 and feel my normal self the second week. I have found my moods have been more even without the steroids. I know everyone is different and some people find steroids vital in managing sickness. I have been lucky with this so far! My appetite isn't as good either and I have to make sure I am making myself eat

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby MSH » Mon Mar 28, 2016 5:23 pm

Yes Filgrastim has the same function as Neulasta.

PCUK Nurse Jeni
Posts: 1082
Joined: Mon Jun 14, 2010 1:30 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby PCUK Nurse Jeni » Wed Mar 30, 2016 10:24 am

Hi Ruthus,

Sorry to hear about your delayed chemo and interruption to your travel plans. Think for most chemo regimes, 1.3 would be reasonable for a neutrophil count, and many oncologists would go ahead on that reading. However, as you rightly pointed out, Folfirinox is a lot more toxic, so its not worth taking the risk - its just a shame that the trip to Spain will be cut short.

With regards to weighing, it really doesn't matter if you are weighed with your clothes and shoes on, as long as you are weighed the same way every time, and on the same/similar scales. Tracking weight will still work as long as you are weighed the same way every week. so, I would not read too much into this. Most hospital scales are digital, and are calibrated regularly, even the old fashioned ones are calibrated! So, it should be fine. Fluctuations in weight which would impact dose banding are still picked up as long as its consistently done.

Kind regards,

Jeni,
Pancreatic cancer Nurse Specialist.
Support Team.

Ruthus
Posts: 177
Joined: Tue Nov 17, 2015 2:39 pm

Re: Mum of 42 recently diagnosed inoperable PC

Postby Ruthus » Thu Apr 07, 2016 6:37 pm

Well I have just returned from my mid CT scan and results/review. It has been a very anxious afternoon and we ended up waiting 2.5 hrs before we saw the doctor. The good news is that my mid point CT scan shows there is no spread and the cancer is contained. The doctor said this is good news and they see the disease as stable. I have now had 7 chemotherapy sessions and the plan is to continue to 12. I have only had once two week cycle as either my bloods haven't been ready or we have been on holiday. I have mainly had 2.5 or 3 weekly cycles.

Although the mid scan results are positive, the information which threw us off kilter and upset us was the measurements of the tumor. When I had the initial CT scan at a General Hospital at the start of November we were told the tumor measured 1cm x 1.9cm. Today the doctor told us that the initial tumor size was 3.5 x 2.4 cms and the mid scan indicates it is 4.1 x 2.3 cms. We questioned this and he told us that the staff at the specialist cancer hospital where I am being treated reviewed both scans this week and these are the measurements which are much more accurate.

I have spoken to my husband and we have thought that as I didn't start chemotherapy until 6 weeks after the first scan there could have been continued growth and actually the chemotherapy has shrunk it.

We were also hoping my case would have been discussed in the Specialist Multidisciplinary meeting this week but it wont be discussed until next week and I will have a further wait. I was hoping to find out information today with regards to arterial and venous involvement but this won't be determined until next Wednesday.

I had been hoping that nano knife maybe an option for me but am now worried the size of the tumor maybe too large.

Proud Wife
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Joined: Sun Jan 17, 2016 9:28 am

Re: Mum of 42 recently diagnosed inoperable PC

Postby Proud Wife » Thu Apr 07, 2016 7:34 pm

Hello Ruth

Oh my goodness, those 2.5 hours must have been the longest hours ever. It is excellent news that your scan has shown no spread and it contained. That's brilliant.

Was your initial scan at the general hospital a contrast scan by the way? My husband initially had a non contrast scan which is not as clear a contrast one. If both scans were reviewed at the same time, then I would trust what you were told today but have you got the sizes round the right way as it would appear the mid scan shows it to be larger?

I think you are right about the 6 week wait for chemo. My hubby finished chemo in January and 2 months later there has been significant growth. I have no idea about nanoknife but would be interested to hear when you learn more as my hubby's pancreatic tumour is larger than yours and I keep wondering if nanoknife is an option for him.

PW xx