Date to meet the Oncologist.

[EmmaR]

Hello all, hope you are all ok silly question I know well hubby will see the Onc Friday the 25th with the hope of having some chemo at the moment he is still very tired and unable to do much started the Creon's so hope he will start to gain some of the weight he as lost 3 stone ! He is eating more but still small amounts ,he still feels his life is over but I keep telling him it's not it's a different kind of life ,and boy is it ! Bloody PC I think it's this forum keeps me sane reading all your stories people you meet when out shopping ( it has to be done ) haven't got a clue and I could gladly ignore them arrrrr rant over .

Kind Regards Emma x

[davidandsam]

Hi Emma

Firstly let me wish you and your hubby the very best as you start your crusade towards a different kind of life!.Good luck for the 25th, I hope that you will make a plan with your oncologist as to where to go from here. I remember well the feeling I had from my first meeting, we set goals and milestones as well as facing some of the harder facts of PC. It gave me a strength to start my fight and I truly hope it does the same for you and your hubby!.Chemo or otherwise I am sure you will feel that at least you are moving forwards.

It is easy to say "stay positive" and so bloody hard to do when you are facing such a challenge, but to look out of the window and see Summer change to Autumn is an achievement right ! little by little I am sure it will all come together for you!

All the very best of luck for the 25th and I hope your hubby starts to pile on the pounds (or is it Kilos these days??)

David

[Cathy]

Hi Emma

Yes, very best of luck for his appointment.

I'm sure now he has started on creons and hopefully the pounds (I'm an old fashioned girl David ) will start to pile on and he will feel more energetic. Let us know how you get on on the 25th.

Cathy xx

[Bee]

Hi Emma ,

Good luck for the 25th, as Cathy says for me I felt much better once a plan was formed and I knew where we were going! Creon is fantastic, sure it will help,

Keep us posted

Bee x

[Slewis7313]

Again, good luck on the 25th with the Oncologist. I know I (we) came away form our first meeting with some much needed positives, primarily an understanding of what could be done and a plan with timelines. Creons were a definite turning point for me as they stopped my weight loss in it's tracks and with the help of chemo, I soon started to slowly put some back on. I hope you see similare reslts soon.

Take care and keep posting!

Steve

X

[EmmaR]

Hello all thanks for your messages David you are right about seeing Summer change to Autumn, I am still worrying about Friday's meeting with the onc the specialist nurse said the treatment maybe Gemcitabine & Capecitabine is this what they call GemCap seen it mentioned on here ? how many times is it given in week and for how many weeks ,I know you can't say for how long as in months as that will remain to be seen but wondering how many hospital visits it will be for the first session hope my question makes sense.

Emma x

[PCUK Nurse Jeni]

Hi Emma,

Yes, this is GemCap. It is usually given in a 4 weekly cycle - this consists of a weekly infusion of gemciatbine for 3 weeks, followed by a week off. Your husband will also be having the capecitabine oral tablets twice a day for 3 weeks, then a week off (these you take at home). So, in one cycle, he will have 3 lots of infusions, plus 21 days worth of oral (chemo) tablets. This is normally given for 3 months, then a scan is carried out to assess how the treatment is working. If the results are good, they will carry on - usually with 3 more months. If not, they may switch to other drugs, if your husband is still fit enough to have treatment.

Don't expect to get the chemo on the first visit - its usually the following week.

Hope it goes OK - any questions, feel free to email us at: support@pancreaticcancer.org.uk

Kind regards,

Jeni.

[Slewis7313]

Emma, I was on GemCap for 3 months which was administered just as Jeni describes. One thing that might be of interest is that the Gemcitabine infusion has to be administered relatively quickly, which means the IV sessions were generally around 45 minutes.... quicker han some other drugs. The main side effect for me was that around 4-5 hours after the infusion, I went into a very deep sleep, usually until the next morning!

Good luck on Friday

Steve

[LindaH]

Hi Emma and Hubby,

It's always a little bit nerve racking Meeting your Oncologist for the first time. What will he be able to do for me, will he listen to what I want, will we get along together....etc.

I couldn't even pronounce the name of my Oncologist, I still struggle now nearly one year down the line, but I tell you Emma he is the nicest man you could wish to meet. Help me.....he never stops. He has phoned me twice as he is finishing work at 7pm just to ask how I am and are such and such tablets working for me. He loves it when I go into his office and say:

"Now Mr B, can I go and see so and so, or can I be placed on a list for this trial or that trial, what do you think about this new drug and oh by the way, I have written to Professor so and so in London and he wants my medical records, is that okay with you"

He seems to thrive on the fact that I WILL NOT take this lying down. It probably sounds a bit 'crass' to say this, but along with my family and friends, he is my rock.

As for his secretary....I wrote her an email last Thursday and said I know I'm asking the absolute impossible here, but I'm in a spot of pain, would it be possible to see Mr B sooner than the 29th. She phoned me a hour later and said would this Tuesday be okay. fantastic.

I go to see him tomorrow and I know he will help me. He has also made a second appointment to speak to the top Oncol at x(edited-moderator) I think just basically to see if there is anything more they can do for me.

Yep, I love my Mr B and I truly hope your Hubby also gets a Mr B.

Good Luck to you both Emma and yes, the Creon will start to help soon as long as you take enough.....Jeni and Dianne will be laughing at me now, I'm always emailing them asking if I'm taking too much and they are so patient as the tell me for the umpteenth time....."You cannot take too much Creon"

Linda x

[EmmaR]

Steve ,

Thanks for the info about Gemcap it's good to know some first hand info on the treatment (if hubby will have Gemcap ) I will at least know not to panic if he sleeps for hours .

Linda hope you have good news off Mr B ,

Hope everyone is upbeat at the moment .

Emma x

[cestrian]

Hi Emma & Mr X

I'm on Gemcetabine and a MEK inhibitor (or possibly Smarties) as part of a clinical trial and have had zero side effects just the odd, unpredictable, day when I've not been as lively as I'd like to be. I am 69 so it could just be old father time!!

Regulars on here will be fed up of me extolling the benefits of clinical trials but I would say without hesitation that if your husband qualifies and there is a suitable one in your area give it serious consideration. The oncologist I first saw gave me a very pessimistic prognosis according to which I'd already have shuffled off this mortal coil. The trial nurses, professor and other staff laughed at this and gave me amazing confidence and so much hope that I was encouraged to renew my Chester FC season ticket. The team's league position is my only current cause of doom, gloom and despondency!! I'm just about to start 3rd cycle of chemo and thanks to treatment and our beloved creons I've put back on half the weight I'd lost and feel much better than diagnosed. I did have a nerve separation operation by key-hole surgery that just stopped the pain like magic so do ask about this if Mr X (what's his name?) is in pain and as a result I'm being weaned off the morphine I was taking so now down to just one 10 mg tablet a day. My GP is delighted by this progress as am I and all my family.

Question whatever you're told and keep asking questions until you really understand what is being recommended. Some on here have really had to fight just to get creons prescribed.

Good luck to you both for Friday, I hope your oncologist is "top of the table" and not struggling against relegation!!

Love and Peace

Mike

[EmmaR]

Hello Mike

Mr X is also known as Jon ,your post as given me some positive thoughts as you diagnose is very similar to Jon,s He has just turned 71 and was very fit until recently but is very fatigued at the moment and is just hoping they will say he is up to having some kind of chemo Friday can't come quick enough only three more sleeps as the grandkids say while waiting for a special day to arrive !

Emma x

[EmmaR]

Hello ,

Not good news from the oncologist she was a very lovely lady and very professional but she delivered the news we didn't want to hear that Jon is not well enough for Chemo and I have to say he is poorly she said it would make him feel worst than he does now but have agreed to see him again in 2 weeks to see if he is any better but I cannot see how he can get there , our brilliant daughter sat in on the visit and told me after that she could see that our answers to her key questions just put it all in to perspective and by giving us two weeks to another appointment her dad could come to terms with things such as the onc saying that Chemo would only give him 6-8 weeks more time over all even if he was deemed well enough to go through the cycles ,bloody bloody hell ! the specialist nurse was wonderful she said to have a Macmillan nurse as soon as to help get his medication up to a better combination than it is now , Jon is very quiet and has that far a way look in his eyes which is breaking my heart , all he said was that he felt afraid and that there was no light at the end of the tunnel this dreadful disease what is it doing to us I know so many of you have been in this position so I just hope you understand what we are going through no I just don't hope I know you do ! To be honest I was somehow relived that there was no chemo because I don't think I could have watched him go through some of the side affects I know he might not have had them all but !! we didn't ask about timescales as that would only have made me watch and wait every minute , so unless a miracle happens in two weeks I hope we can enjoy what ever time we have left together , I went armed with all the questions that you all have suggested I asked and I got them all answered I think I impressed them with my knowledge about PC and it's treatments all thanks to this forum ,I don't think I let my man down I will keep you all posted , off to bed now with a very heavy heart and hope I can get up in the morning and say what as be come my mantra ( Yesterday's gone Tomorrow hasn't come and it's today and it's now and we are here and nobody knows what tomorrow will bring so we are no different to anyone else at this moment )

Love to everyone

EmmaR x

[belgrade]

Hello Emma,

So sorry to hear about your husband's prognosis. I know that sinking feeling only too well and just wanted to say I'm thinking of you and your family.

Take care,

Hilary x

[davidandsam]

Emma

So sorry to hear that your hubby will have to wait another two weeks for the answer. Your mantra is fantastic and I am sure such a mindset will help you all fight this damned desease together! We don't know what tomorrow will bring and I truly hope that each day your hubby will find that little bit of extra strength, to eat a bit more, to drink the fluids he needs and to feed from your positivity in in order for you to hear the words " let's start treatment" from the oncologist !

It's easy to say but from my experience I find that constantly feeding off the positive energy of those around me,( inlcuding our four year old daughter who know's no different, family and friends)gives me an energy and a fight that goes deep inside me. It allows us all to move forward.

I guess it's a blessing to not rush into the Chemo, these people really know their stuff and would not take risks with something so precious.

Good look to all in your family Emma and keep us posted !

David

[Bee]

Hi Emma,

I really am sorry that you had bad news from the oncologist, but as you say also a relief that at least fro now, no side effects of treatment to cope with.

It is so hard to watch the person you love go through this and I know sometimes I feel really helpless and frustrated that I can 't change things. But your mantra is definitely the one to adopt, live for today and cherish what you have and enjoy one another.

Take care and keep posting

Bee xx

[Cathy]

Hi Emma

As with the others, I am really sorry to hear that Jon's appointment didn't bring the news you (we) had hoped for. It seems strange doesn't it that something you want to make you feel better cant be administered as you aren't we'll enough. But the last thing you want is to make Jon more poorly as a result. It sounds like your oncologist is super so will be doing the very best for Jon.

Hopefully he picks up over the next couple of weeks. Stay strong and, as you say, cherish this time and don't think of what tomorrow might bring.

Cathy xx