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Mum of 42 recently diagnosed inoperable PC


Ruthus
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Thanks all


I am hoping that by the time we have finished collating all the money from the quizzes, Just Giving and the concert that we will be in the region of £25,000.

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  • 3 weeks later...

Hello all

I want to wish all of you a lovely Christmas. I know that will be difficult for many but I hope that in the face of things you manage to enjoy this time and have atleast some relaxation and comfort with family.

I am feeling much better about Xmas this year than last year. Last year was awful as I was in a state of shock after diagnosis. This year I feel much better about things even though I have stage 4 PC! We have just had a lovely 10 day break in Spain again and I managed a 20 mile bike ride.

I am due to have gemcitabine, start of 5th cycle this p.m. I'm not looking forward to it to be honest and could do with a week off.

Anyhow, I must crack on with it.

I am remembering the people who we have sadly lost on the forum this year. People who were inspirational and great source of support for me when I was first diagnosed. I am sending love and thoughts to their families.


Love Ruth xx

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Hi Ruth,


Horrible that you are having chemo this week but fantastic that you have had a good break and are doing so well. You are so good to us all, encouraging us, and doing such a grand job with raising funds and awareness that we forget how lowering the treatment is for you. I will be thinking of you and all those who are walking (cycling in your case) this path everyday and hoping that you are given the strength and resilience you need.


Much love.


M xx

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Hey Ruth.. I have seen the photos (and the monkey dance video) and it looks like your Christmas was a rip roaring success and it was lovely to see. Are you not the Capecitabine anymore? I noticed you only mentioned Gem for your last treatment. I hope you have a lovely new year and remember, you can always take a sneaky week off... I don't think the occasional one makes a huge difference but in terms of enjoying quality time it can make a huge differnce to life. x

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Hi Ruthus

I have just posted in the 'success with Folfirinox' section of the forum to give hope to others as my dad had a very similar presentation-the tumour had encapsulated arteries and we were inoperable, it was the worst thing imagineable. My dad was really fit and healthy too! Dad had 12 cycles of folfirinox (he still had hair at the 12th session albeit it was thinner- it wasn't a drastic change though just very gradual...hairs on pillows etc which was upsetting for me to find as his daughter but the effectiveness of the Folfirinox out weighs the hair loss. It was fatigue and loss of appetite that dad suffered with and still does. The oncologists are great at modifying the dosages too if you can't tolerate the Oxiliplatin (dad had 80%), he did get some peripheral neuropathy into the last two fingers in his left hand also. Dad completed 12 cycles and proceeded to surgery as it became operable(we couldn't believe it!). Dad is now recovering following the Whipples and the surgeon is really pleased with his progress. I hope this helps you! x

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Hi there - I am still taking capecitibine as well as gemcitibine. I am due 2nd IV gemcitibine infusion tomorrow. After this cycle I have one cycle left then rescan. I was thinking the other day about how this illness is effecting me and the worst aspects of it. For me personally the worst aspect currently is weight loss. I have an ileostomy which is rare and unusual with whipple patients but something they perform more commonly in Germany. I have found this the most difficult thing to manage and control.

Due to the ileostomy I find diet difficult to get right as certain foods can go straight through me. Psychologically it's also not very pleasant.

The next thing is sleep. I sleep solidly for ten hours each night. I know my body needs this but I find it so hard to get up in the morning. The next thing is feeling the cold. I am sure my low body weight doesn't help with this but chemo will also make this worse. I sometimes feel nauseous and my appetite isn't great but overall that's it! I know this won't last but in terms of pain I have none. I am sure if my weight was a stone higher and I didn't have this ileostomy id be feeling pretty normal.

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P.S we had a lovely Xmas. I'm glad you liked my daughters monkey dance (on Facebook). We had a lovely family day with parents and children. Last year I couldn't face any of it but I felt totally different about it this year. We even had lots of friends around the other day for games and food.

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Hi Ruth, I haven't been on this forum for a long time but wanted to see how you were getting on as you were diagnosed the same time as my grandmother. Unfortunately she passed away in August because of liver Mets and poor liver function. But she was well until only two days before, so I am very grateful for that.

We used to visit an oncologist who is very knowledgeable with the liver and he recommended Sam-e. I truly believe the addition of this supplement kept my grandmother very well until the very end. It takes some pressure off the liver and we saw the difference 4days after she had started taking it. In particular it helps most with Bilirubin levels. Both of her oncologists were very enthusiastic about it and recommend it to other patients. This is all I came on to say, so I hope it could help some time.

I read through some of your recent posts and want to say how amazing you are. People like you are inspirational. Thankyou

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I have looked up that SAM-e as I am trying to detox dad's liver at the moment and I just want to mention from my research that Web-md report it is a major interaction with any anti-depressants and should not be taken at the same time so, as with all these things... consult you doc first because I know a lot of people with PC are also on anti-depressants. I just thought I would quickly mention it. x

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Dear Ruth


I've just come on to say how in awe I am of you. What you've only gone and achieved this year is quite staggering. I look forward to saying exactly the same to you this time next year and the year after....


Lots of love

PW xx

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Yes, i didn't mention that SAMe is most notably used for depression in this country so there would be interactions. Fortunately for my grandma, she had only very recently begun a trial of an antidepressant and so managed to replace that with SAMe, it also meant she could wean off the urso acid aswell, which meant alot less swallowing pill!

we were very fortunate that we were in a position to try it with the support of our oncologists and it actually had the desired effect. I know of others who have had similar experiences, but these cases have been breast cancer with liver Mets, not pancreatic. I pray that SAMe could be helpful for someone on this forum as I just want to think that my grandmother's death has created some positivity rather than just terrible heartache

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Thanks for the suggestion Helliomo. As I take antidepressants it's probably not such a good idea for me. Thank you all for your kind words and messages. Firstly, Happy New Year to all of you. Here's hoping 2017 brings better things for us all. I have a querie and wondered if anyone else has experienced anything similar. I've been fortunate enough to never have had a whipple attack or any pain at all. I know I'm very lucky in this respect. I'm currently taking Gemcap and am in 5th cycle. I've tolerated it very well but since around cycle 3 during the last week I feel nauseous, cold and tired. This past week I've felt continually nauseous and anti emetics don't seem to really help. I've also had a few bouts of intense cold where I literally feel cold to the bones. I can't get warm and get very shivery. It's a bit like flu. I had it really badly yesterday and had to go to bed early just to get warm. I'm not sure if this is the chemo or the illness and just wondered if anyone has experienced anything similar. X

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Ruth the coldness is a common symptom and short of long johns etc we have not got over this with dad. I have two things to say on this that is always crap not to be definitive....


Firstly, just trust your own instincts re infection... I believe 20% of infection does not have a raised temperature. If you get worse then go to the hospital and don't move until they test your bloods etc. Also, if it carries on and the NHS poo poo you then speak to prof again re infection as I have found he is a bit more forward thinking than the NHS to deal with this. I think you are private as well but some centres will right it off to PC too quickly. We all know you are not ready to roll over to defeatism. Infection is your greatest risk.


Secondly, unfortunately from my experience the chemo effects are cumulative and so the chances are it is that. Hang in there until the next scan so you can make an informed decision. There are 2 lines I see with people.. persevere like dad and counter all the side effects or take a break and regroup before you get too ill to take the treatment. I would try the first option if it was me. You know we brought dad back from hell when he was on his knees two months in. Are you on Emend? It is the gold standard nausea treatment but some have to push for it.


Also, my dad got this anticipatory nausea that built up towards treatment and low level Lorazapam (suggested by PCUK) sorted this. There was also a travel sickness patch that you can buy in boots that worked amazingly (this may have been PCUK suggestion as well). If you are not on it then let me know and I will find out what it is.


What I have learned is there are solutions to most things... the only ones I have not seen is to coldness and tiredness.


I hope that helps is some way.


xxx

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Hi Ruth


My hubby had a few episodes of this where his bones would almost rattle he was so cold. I knew straight away an infection was brewing either in chest or urine. I would get yourself checked out tomorrow just to be on safe side. If it is an infection the sooner you get treated the better lots of love xx

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It actually crossed my mind last night that it could be an infection and I'm not very good at taking my temperature anymore. I will test it but in a way the last place I want to go is hospital so think I've been avoiding this. I know if an infection is brewing immediately starting antibiotics is recommended. I actually feel much better today than the past three days so am putting it down to the cumulative effect of chemo as it started the day before chemo (anticipatory nausea which I get each time now) and for three days afterwards.

I mentioned to the nurses last week re the nausea and they were very good in saying if it persists to discuss it with them and they will look at things e.g antiemetics and other possible causes.

The nurse I spoke to said she had done her dissertation on anticipatory nausea and one lady who had had treatment 8 years ago suffered with this particularly badly. She bumped into one of the nurses who treated her 8 years later and the lady vomited. It just shows how powerful the mind and associations are.

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Oh Ruth, I know the last place you want to go is to the hospital but if you ever suspect an infection then you must go. There is a reason they have the 'golden hour' (I think it is called) that means for cancer patients from the moment they check in they must be given broad spectrum antibiotics within an hour and then the hospital should find the cause. I am sorry if I am teaching you to suck eggs and I am sorry I am blunt but this is because it is often not the cancer that kills the patient, it is infection. Not only does the chemo make you more at risk but the cancer does, and as with everything around PC - especially this blasted one. Please don't get complacent on this. You know I follow a tremendous amount of stories and it is infection nearly every bloody time if not end game PC.


I am glad you are feeling better though and the chemo is cumulative so it does sound as though it is that. Please remember dad if this gets worse for you.. the PCUK nurses got us through every blasted symptom to get dad back to a 'new normal' and he got so bad I thought he was going to throw the towel in. Anticipatory nausea is nasty.. the worst side effect we encountered by a mile but low level lorazapam cured that for dad and it is important that you do everything to nip it in the bud straight away. Lorazapam may also make you feel spaced out for a couple of weeks but that did go for dad. From my research the longer it goes on the harder it is to treat. The patches dad has found relief with are scoperderm and I think you can just get them from a pharmacy so these could be worth a try - that cheap little patch was a golden find for dad (I think it helps with excess saliva etc as well).


xxx

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I know all of what you have said is true Dandygal. Thankfully I am feeling much better now and it does seem to have been a blip over the weekend most likely associated with cumulative chemo. Plus I went out on my bike the day after chemo and fell off whacking my hip on the tarmac. Not the best thing at all and so I don't think that helped, as well as it being very cold and me getting very cold whilst out with friends on the bike.


I checked my temperature yesterday and the day before and it was fine, plus the nausea has alleviated and the intense cold has pretty much gone. I know how important it is to act on any suspected infection and there is that golden hour where antibiotics should be taken immediately. I have some in stock! I have to admit though that when I was feeling so cold and rough on Sunday night all I wanted to do was be in my own bed and sleep. I was so tired and I thought if my temperature is high I really don't want to have to go through all of the ringing the hot line and going into hospital. I would have done it if I had to but the thoughts I had when feeling so rough was complete avoidance and just go to bed.


It will be interesting if the anticipatory nausea returns tomorrow in preparation for Fridays final 3/3 gemcitabine in cycle 5. We will wait and see.


xxx

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Good to hear you are feeling better Ruth, you must have taken a big thwack falling off your bike!


You are being very good and you obviously know the routine about infections. Good woman for knowing what to do and when but you are our bright star so we all worry and fuss if you are down or a bit poorly.


It must be horrible anticipating this noxious stuff and just because you are a star it doesn't mean it's not awful and that you don't feel fed up or angry or miserable with it sometimes. You do so well that sometimes it's easy to forget that this is a very serious business and a mental as well as physical drag. I hope it helps to know that so many of us are hanging about in the background pushing from the fourth row (one of Louis' favourite sayings), willing you on and here for the bad days as well as the good.


You are very much in my thoughts, M xxxx

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Ruth the last thing you needed was a fall from your bike eh! Glad you didn't do too much harm. I'm on to wish you all the best for Friday will be thinking of you and will hear how you get on....good luck

Elaine

X

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I too am pushing from the fourth row Ruth, and hope that you get the nausea and chills better controlled. My husband has also suffered very shivery spells from time to time - they usually pass after a day or two. No explanation so far but reading of others' experiences they seem to be quite common amongst the Whippled and a bit of a medical mystery.

xx

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