my lovely dad

[DRAD3]

Chemo does muck about with things, including the platelets. Don't panic, Petra, I am sure this will rectify itself ready for next time. Think of it as an extra recovery week, which won't do any harm. Fingers crossed that the CT scan gives some good news and keep positive, despite the uphill struggle - you will get there, as will your Dad - we are behind you giving you a big push!

lots of love

Deb

x

[petra]

Thanks deb, the doctor said she would be in touch re the CT scan today, have been a complete bag of nerves all day got to about half four and my partner rang the ward now they say it will be monday! I understand they havr so many patients but when you get youtself ready for some news its a bit crushing when you don't hear anything! P xxx

[karen17]

I agree Petra that seems so unfair when you're waiting for such important news. I know they are really busy and pushed but they need to put themselves in your position.

Try to just enjoy your weekend and stay strong. Will be thinking about you on monday

Karen xxx

[DRAD3]

You are right Petra - I think they under-estimate just how stressful it can be waiting for results and to say one thing and do another is not at all helpful - just adds to the daily burden. I do hope that you manage to switch off a little bit over the weekend and relax - hard I know. You keep positive - you are doing great!

Deb

xx

[petra]

Thanks everyone!!!! Its just too stressful all the waiting and wondering and thinking all the time, I feel like I live and breathe PC which is no way to be!!! Was so rediculously nervy today I took dad to the local for a pint of his fave bitter I couldn't stay in the house a moment longer!!! Love P xxxxx

[PCUK Nurse Jeni]

Hi Petra,

How are things? Have you had any news of your dad's CT results?

Regarding your other post about platelets, this is quite common with Gemcitabine. 89 is not really that low, but too low to give another dose of chemo on top of, as it will make them lower. Usually, this rectifies itself by the time the person goes for the next dose. The body will make them itself at its own pace.

And, you are right - they will not transfuse platelets. Except in haematological diseases, where the platelets can be as low as below 10 sometimes! Or if a bit higher and there is bleeding. But, not at 89. They should be above 100 for chemo ideally - some oncologists will use their discretion and might give chemo if between 95-100. But, they prefer to wait for the body to recover itself.

KR,

Jeni.

[petra]

Hi everyone, thanks so much for your thoughts about my dads ct results, thee doctor phoned us today, at last because I couldn't of taken the anxiety for much longer! So, there is good and bad news the actual primary pancreattic cancer has not changed which is great, however there is a new lesion on the liver and the previous two have grown. But, I am trying to see the positives. Yes I would love to have seen no more liver mets and the old ones and the pancreatic tumour to have shrunk, but it hasn't spread anywhere else and in four months of very patchy treatment (he has never had more than two doses in a row without something going wrong, almost always only had a half dose and in total has had nine doses) there is only one new lesion. He is very well in himself, I was hoping for a better liver picture as his lfts are normal. So what the oncologist suggests is to start capecitabine, but not with gemzar as she says he will never be able to tolerate this. What are tour thoughts on this? Aand why hasn't the liver responded as well as the pancreas? Kind regards, P xxx

[DRAD3]

Hi Petra

My husband had the same result - no change in the pancreas but new liver mets. Not sure why this happens. Hopefully the new treatment will stop any further progression - keeping everything crossed that this is the case. Keep doing what you are doing and seeing the positives - this attitude is crucial in keeping you going. So glad he is feeling ok in himself - long may this continue.

much love

Deb

x

[petra]

Thank you deb for your kind words and wishes, got pre chemo on 27th so will see what the plan is then. I've just been in to my dad with a cuppa, and I had a good look at him and cannot believe how ill he is, he looks so well and is heavier than he has been in years! It all just seems so unfair! I think maybe giving up work has helped although I know he really misses it!anyway since diagnosis last august my brother has sought help for alcohol problems and really looks like he's sorted his life out which is a great worry off dads mind and another reason I think he is well in himself, he hasn't got that too worry about at least! And to me that's another reason to be grateful, really couldn't cope with my poor dad and a wayward sibling at the same time.....much love P xxx

[DRAD3]

Hi Petra - I can remember going out with my husband and people saying how well he looked. Whenever we were at hospital appointments, sat in waiting rooms, it was always me that the staff would approach, assuming I was the patient! We used to laugh about that - I must have looked awful (sleepless nights and worry took its toll!) Whenever we would go out, people would say he was looking great - they didn't realise that we only ventured out on his good days. I am sure some people thought we were making it all up to get attention (some people gossiped as much apparently!) - my husband used to say that it would take him to actually die before people would realise - I think that was the case for some people - close friends and family knew the reality of it though. My husband was only 46 when he died and it sent a shockwave through our community of family and friends and I know many of us (me included) started really looking at life and at ourselves. I am sure that is what your brother has done. It is a wake up call, makes you get everything into perspective and you suddenly realise what is important. Sad that it takes something awful to be a catalyst for positive change but life does seem to be like that. I do hope your brother continues to do well in his recovery and that you pull together as a family - your Dad will be so happy.

Lots of love to you Petra

Deb

x

[petra]

Oh deb, I'm sorry I didn't realise your husband was so young,and there's me going on about how my dad is too young still to be given a PC diagnosis.....cancer really Is wicked.dad wasn't too great yesterday he went a horrrible green colour and said he felt sick and giddy...soon passed though although he was so tired he couldn't even go to the shop, so sad to see my dad like that to think only six months ago he was commpletely normal and working full time!! Your right about a serious illness giving perspective it certainly made me see things clearly! Much love, P xxxxxx

[Catherine]

Hello Petra,

How is your dad getting on now and how did pre chemo go? I'm really pleased that your brother is seeking support. That must be a huge weight lifted off your dads mind. How are you bearing up with it all? I can relate to the looking so well thing, my mum looks better than she has in ages and it is hard to understand that she has this thing inside her that is trying to do its worst. I hope your dad hasn't been green again.

Lots of love

Catherine xxx

[petra]

Hi there Catherine and Deb, pre chemo was not good!!! I don't know why, I may have mis interpreted what the dr said (slight language barrier) but I was under the impression that dad had one new metasteses on his liver, she showed us the imaging and counted seven!! what a shock. My poor dads face it was horrid. I really cannot imagine why this confusion/mis information has occured but anyway it is what it is I guess and i'll get on with it. So he has done a week on capecitabine now, a few bouts of nausea but otherwise ok so far, I guess side effects may come later?? hope not. He is putting the cream on his hands and feet religiously, although one day he feels like eating a certain type of food and then the next day the thought of the same food turns his stomach. I wonder if this is attributed to the chemo. He has been referred to a community chemo nurse who is coming to see him on Tues. Also, i asked if he could have GemCap and she said no this is contra indicated as he was barely tolerating half dose gemcitabine. I thought they could give it a try at least but i am not an expert on this does anyone have experience of stopping gemcitabine and being started on capecitabine?? is the capecitabine better for liver mets? I am so thankful the pancreas is stable which means that he got benefit from the three cycles of gemcitabine, although there is progression in the liver> Although maybe without the chemo the liver would have been worse? Just hope he can tolerate this capecitabine he is having two weeks on one off then pre chemo. Hope you are all well, Love Petra xxx

[DRAD3]

Hi Petra

You remind me of myself while Gary was having treatment. So many questions and what ifs. I still do this now - he was on GEMCAP, then had Gemcitabine with radio. I now hear of more success with the radio combined with Capecitabine so wonder whether he would have fared better with that or was his cancer more aggressive/other things going on? So wish we knew it all! I guess we just have to try different things and hope for the best - that something is just suited for your Dad and it does the trick. I recall the sore hands and feet being the worst aspect on capecitabine, so hopefully your Dad will do OK. I think you will find the taste in food roller coaster not at all unusual - I just filled the cupboards will all sorts of things and hoped that I had something in that was fancied (I did have to go on special shopping trips sometimes) - worth it to make sure he ate tho!

Take care Petra

love

Deb

x

[Catherine]

Hi Petra,

I'm sorry about the pre chemo. What a shocker!!! Lets hope he tolerates the Capecitabine better and it gets to work quickly. I would take Debs advice and stock the cupboards with all sorts, then you will have what he fancies at the time in hopefully. Good luck for Tuesday, I'll be thinking of you xxx

Deb bless you, it must be horrid wondering and thinking. I am sure thinking needs to be banned - it's certainly bad for my emotional health. I admire you so much with your words of wisdom and kindness to others. You always know what to say.

Lots of love to you both

Catherine xxxx

[DRAD3]

Thank you Catherine, for your kind words. I am a thinker, you are right. I have a need to try to make sense of everything! I do believe every experience in life, good and bad, is a lesson to be learned so can't switch off my inner student! I am not a religious person but have been leaning towards buddhist teachings lately which tell us that life is a journey to enlightenment - I have been wondering about that too!

Love to everyone, keep strong.

Deb

x

[Catherine]

Hello Deb,

You're very welcome. I think Buddhism is a good way to go, it has certainly brought peace to those who I know who have gone down that route. I'm a thinker too, I have taken to making hearts and bunting to give my mind a rest. My first lot are on sale at our hospice. I figured I might as well try and be useful.

Take care

Catherine xx

[petra]

Hi everyone hope you are all ok, sorry havent posted in a while have been so busy trying to sort out a job, hopefully starting very soon-paperwork overload!! dad is doing well with his capecitabine, anti sickness working quite well, the main problem is his feet which are a bit sore, he has cream and soaks them in salt water three times a day as requested by his dr, seems to keep things at bay he is still able to walk around. got another CT on 24th of april, just hoping and praying the liver is more under control!! he has a lovely community cancer nurse who comes to see him she is very good. he doesnt sleep too well and seems a bit down sometimes, i think i am becoming a hard case as i seem to be less upset by such things, getting used to the rubbish situation i guess......i can understand why he feels a bit down as only 8 months ago none of us were affected by this awful disease! has anyone heard about the new study using metformin(diabetic drug) with patients with advanced cancers??? apparently good results have been shown in pancreatic patients as the drug starves the pesky cancer cells of the glucose they need to grow and survive. also any news on nanoknife?? would love any info the PCUK nurses got from the trip to find out about it> much love, Pxxxx

[Catherine]

Hello Petra

Lovely to hear from you. Good luck with the job situation.

I'm glad your dad is doing well with the capecitabine, I hope his feet have settled down. I haven't heard much about metformin, though my mum was on that to control her diabetes until November last year and her cancer has responded well to treatment. Could be coincidental though.

I hope the CT scan shows positive things. Thinking of you

Love Catherine xx

[PCUK Nurse Jeni]

Hi Petra,

Thanks for the enquiries.

I will email you separately about these questions you have raised.

Kind regards,

Jeni.

[petra]

hi jeni, yes that would be great, thanks x

[LindaH]

Hi Petra,

I have been reading with interest about your lovely dad and I sincerely hope the turning point for him is now in hand.

I was diagnosed in December last year with inoperable tumour in my pancreas and unfortunately has now spread into my liver, but to be honest my oncologist wasn't overly bothered about this as I am on the chemo combination of Cisplatin and Gemcitabine coupled with good sickness control in the form of Cyclizine 50mg tablets taken at regular intervals. My oncologist is convinced if the chemo works -for me- it will also work to stop the spots in the liver.

I am 59 and I seem to be tolerating the treatment quite well *touch wood*. Unfortunately (I keep using that word) my tumour is a rare tumour with no statistics as there are only around 25 known cases in the UK, so nobody knows whether my treatment will work to either shrink my tumour or stop it in it's tracks....it's in the lap of the Gods at the minute.

I was interested in reading about Metformin and I will ask Jeni about it as I was also discovered to have Diabetes type 2 at the same time as I was diagnosed with pancreatic cancer, so basically I thank you for bringing this to the forefront as I for one am always looking for something to hold on to that might just help me to live longer, as I have been given a possible longevity of one year, but my daughter is only 21 and I so want to see her graduate, find the career of her choice...etc...like we all do.

Good luck with all you try to help your dad, I know I would try anything, I'm not giving up without one hell of a fight.

Linda xx

[petra]

Hi Linda, and everyone!! Hope you are all as well as can be!!l Linda yes jeni will be able to give you info re metformin, I really don't see any reason why u should not have it although u may have to pitch your point to your consultant as I have often noticed that in this situation if u don't ask I don't get!!!! Sounds like your on a good dose of chemo and tolerating it well , I do hope you continue to do well. Dad has had a very torrid time of it of late, he had a mini stroke back in April I found him in a right state about 8 in the morning when I got home from a nightshift, and ended up back with him on the ward where I had been working all night oh the irony! Seriously though it was so distressing to see him like that

I will never be able to forget it and his face in the

Ambulance, really horrid. Latest scan showed no brain mets ( they thought maybe that had caused the problem) stable disease in the panc no new mets in the liver but growth on the ones there already albeit slow, so not too bad!!! Saw a different dr the other day his platelets too low for treatment so we are to wait Another week, he has already had two wks off due to being completely washed out by the chemo, I don't think it's right he should see different Drs, this one kept enc him to stop treatment she was so pessimistic!! Now dad thinks he's on his way out....never mind lets hope for better news Friday!!! Much love Petraxxxxxxxxxxc

[petra]

Hi everyone, just to let you know my beloved dad passed away 13th aug at home with his kids around him, was very peaceful at the end and palliative care were great his symptoms were well controlled. I am quite devastated to think I won't speak to him again and I miss him already but am keeping busy with funeral plans all the donations are going to pancreatic uk, can't thank Jeni and Dianne enough they have been great! I hope my dad has gone somewhere lovely where illness doesn't exist and PC is unheard of of course! This is a great forum and thanks for everyone's support, everyone is so positive and nice there is no negativity or nastiness it's really great! Kind regards, Maddy xxx

[Cathy]

Hi Maddy

I am really saddened and sorry to hear of your lovely Dad's passing - but glad it sounded very peaceful.

I hope the funeral goes, or has gone perfectly and to let you know we are thinking of you.

Cathy xxx