A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

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LindaH
Posts: 186
Joined: Tue Jan 15, 2013 8:12 pm

new regime

Postby LindaH » Wed Nov 27, 2013 11:48 am

I went to talk yesterday - I say talk, but I feel so low at the moment I couldn't help but break down crying.

I went to see my Oncologist yesterday with the main focus being on the injection I had last Thursday which I didn't feel has worked to bring the pain under control as the pain is still there. Celiac Nerve Block.

Looking through my notes he could see that the injection had worked, in-so-much-as they severed the nerve in question, but unfortunately the pain I am now experiencing is all down to the cancer, which he thought would happen.

The cancer has apparently become active again in my liver which he feels is where the tumour is starting to spread more rapidly.

The treatment from here on in; is, more Chemo, but this time in tablet form, (Capecitabine) so I least I won't be sat in hospital most of the day. I will be having another scan within the next two weeks and I am now being treated for pain through the Trinity Hospice and they have started me off on a strict regime. I may have to take the DVT injections for the rest of my life, but that's no hardship considering what I've already been through.

It has upset me, no doubt about that, but I've go to get on with it and try to stay on this earth for as long as I can.

I'm now taking OxyConTin, OxyNorm, Pregabaline, Co-Amilofruse (ankles swollen with fluid)
and right at this minute - even though I take Omeprazole - my stomach feels very sore.

I will also need to have a blood transfusion Monday morning as my blood cell count is very low ( due to the tumour), which could take up to three hours, so I will take plenty of reading material with me.

I couldn't help but break down crying and I know my Oncol is upset for me, but he's not going to give up on me, so I'm not going to give up either.

One thing the Trinity nurse and doctor did say was not to give up on the injection, just because it hasn't stopped my pain within the usual time of 3 days, she said it might still stop it, but just take longer for me.

I've gone from taking no tablets at all.....or very little.....to taking 10 to 12 a day.

I just feel if I could combat the pain it would help me so much to carry on with life, but it's no quality of life when you're in constant pain. I shouldn't grumble, goodness when I think of dear sweet people on the forum going through much more than me, but I guess we are (what you would say, in the same boat with this disease)but then again we are also different, especially with pain, I'm such a softie I know I am.

I will be hopefully having a CT scan within 2 weeks, so that will show what is going on inside, I fear it may not be good news.

I do try to give myself a good talking to, but I don't feel as though I am listening, because I still keep getting down.

Linda x

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: new regime

Postby PCUK Nurse Jeni » Wed Nov 27, 2013 12:36 pm

Dear Linda,

So sorry to hear how things are for you right now.

I have heard of nerve blocks before which take a bit longer to take effect, so as they say, don't give up hope that they will not work. It may happen yet.

Sorry to hear that you have to have more chemo, but as you say, at least you can take it home with you and not have to be hooked up to drips again, etc...They are relatively well tolerated Capecitabine, although still chemo, so same rules apply to being vigilant with side effects, which I know you are anyhow.

The blood transfusion should make a huge difference to you in terms of energy levels and tiredness, if you are experiencing these (probably are if you are needing a transfusion). Depending on how many units you are having, they usually take 2 hours each, so if you are having 2 units (the least number usually given), then this would be 4 hours. Unless they give it faster, but I have not come across this before.

Hope it goes well, and you feel better after it. And don't worry about feeling down on here - you are entitled to. You are such a support to others, and you are so positive, its OK to have a day when you don't feel tiptop.

Take care,

Jeni.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: new regime

Postby Cathy » Wed Nov 27, 2013 1:37 pm

Hi Linda

I am also so sorry to hear this. Hopefully what Jeni says will happen and the nerve block will kick in and the blood transfusion give you a boost.

You and my Jonathan are treading similar paths at the moment. His last CT scan showed a small change from his previous including on his liver - this has cause him a lot of pain (also on oyxcontin 30mg x 2 day and oxynorm 20mg) but he is due to resume treatment tomorrow Gemcitabine and Capecitabine (GemCap) which we are hoping will stop it in it's tracks and deal with the symptoms. This is his oncologist's aim as she wasn't so worried about the small change itself (which was good for us to know).

Here's hoping that your scan doesn't reveal anything ominous AT ALL and you start to feel more comfortable soon.

I'll be looking out for your posts.

Take care

Cathy xx

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: new regime

Postby cestrian » Wed Nov 27, 2013 1:45 pm

Linda

"Fatigue doth make cowards of us all!" and if you add constant pain to that it is a no wonder that you are on a bit of a downer!! It is such a shame that the injection seems not to be doing its work but as wiser counsel than mine have pointed out it may just be taking a little longer to kick in - let's hope that's the case.

You are so brave with all that you are having to endure but you know that we are all with you and rooting for you as well as delivering virtual love and hugs to comfort you. Only this morning I was remembering with my wife the times before I was diagnosed and had had any treatment when the only relief from pain I could get was to roll up on the floor!! I felt awful and could not envisage being pain free but mercifully am lucky enough to be just that right now and it does make such an enormous improvement to your general well-being if you are not in that constant battle.

Love and Peace

Mike x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: new regime

Postby J_T » Wed Nov 27, 2013 11:34 pm

My goodness Linda, you have been through so much, give yourself a little slack! You are allowed to feel down now and again. You had high expectations from your recent procedure which may yet prove to be of benefit. We are all wiling for the thing to kick in!

Of course you will keep on fighting, you are a strong woman with a fab family behind you plus us raggle raggle lot ready to listen to you and support you whenever you feel the need.

Much love
Julia x

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: new regime

Postby cestrian » Thu Nov 28, 2013 8:19 am

These lesions on the liver seem to be a problem and it was because a small one of mine had escaped the effects of the Gemcitabine that my trial was terminated. Interesting to see the alternative chemo that is being tried to rein these in. Although mine is accompanied by a very small amount of fluid I'm having no pain or other symptoms from it at all. Had my usual chemo yesterday bloods all fine and as usual no side effects - lucky or what!

Off to Lanzarote this morning for our long weekend with friends who live there so I will try to forget everything and just enjoy the sun (hopefully)!!

Love and Peace

Mike

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: new regime

Postby J_T » Thu Nov 28, 2013 9:46 am

Have a fab time in Lanzarote Mike. I love it there so well jealous!

Julia x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: new regime

Postby Cathy » Thu Nov 28, 2013 10:52 am

Hi Mike

Yes, have a great holiday. So pleased you have so few side effects. My fella restarts treatment today and is feeling VERY apprehensive about side effects. Have an absolutely wonderful time.

Julia - raggle taggle indeed!! ;)

Cathy xxx

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: new regime

Postby Sones » Wed Dec 11, 2013 3:40 pm

Hi Linda just been thinking about you so thought I'd come on and ask how your getting on. Sue.xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: new regime

Postby J_T » Wed Dec 11, 2013 7:18 pm

Yes me too, not heard from you for a while Linda.

Wishing you well.

Julia x

PCUK Nurse Jeni
Posts: 1112
Joined: Mon Jun 14, 2010 1:30 pm

Re: Sad News

Postby PCUK Nurse Jeni » Mon Dec 23, 2013 1:29 pm

Hello to all the forum family.

It is with great sadness that Pancreatic Cancer UK have learned of the sad passing of Linda, who posted on here as LindaH.

Linda passed away peacefully last night.

I am so sorry to deliver this news at such a poignant time of the year, but I know that some of you were asking about Linda, and have been concerned about her.

We would like to extend our sincere condolences to Linda's family at this sad time.

Kind regards,

Jeni, Support Team.

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

Re: new regime

Postby MSH » Mon Dec 23, 2013 2:14 pm

RIP

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: new regime

Postby J_T » Mon Dec 23, 2013 2:15 pm

Oh No! I have been wondering and wondering about her. I thought she was doing okay.

This is so sad for her family and her forum family too.

Darling Linda, rest in peace xxxxx

Dfarmer
Posts: 32
Joined: Sun Jan 20, 2013 4:53 pm

Re: new regime

Postby Dfarmer » Mon Dec 23, 2013 2:42 pm

Rest in peace Linda. Thoughts and prayers are with Linda's darling family
X

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: new regime

Postby cestrian » Mon Dec 23, 2013 3:56 pm

May your God bless you Linda, RIP.

Sincere condolences to the family.

Love and Peace

Mike