A forum for advanced pancreatic cancer issues

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laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Devastated

Postby laura » Tue Dec 17, 2013 1:29 am

hello cheryl, did leave a message to you on another thread, hadn't seen this thread then.

so so very sorry to have you back on here as a carer again, this time so much closer.

you must both be whirling with shock, that will settle down, honestly, thats when the fighting gloves go on and you both stay positive and fight.

so difficult for either of you not to have memories of MIL right in your face, you know that each case is differant and theres NO REASON that your hubbys wont also be differant.

sending you both lots of love, positive vibes, and strength strength and more strength.

bri is doing v good, hugs cheryl, laura xxx

charney
Posts: 74
Joined: Wed Mar 14, 2012 2:29 pm

Re: Devastated

Postby charney » Tue Dec 17, 2013 10:15 am

Hi Laura
nice to hear that Bri is doing so well, he gives us all hope. yes shock is
an understatement at the moment and as you say all so fresh with Audrey. Steve
is as I have said still very low but is at work, he suffers with pain and bloating
at the moment, not too bad in the day but seems to be worse at night. Hopefully
those boxing gloves will come out soon.
love and best wishes
Cheryl
x

Charney22
Posts: 21
Joined: Tue Dec 31, 2013 6:47 pm

Re: Devastated

Postby Charney22 » Tue Dec 31, 2013 8:37 pm

we'll spent most of today at a & e. Steve now has a dvt in his
Calf and has been put on claxane injections. the radiologist said that this would
Stop chemo starting has anyone experienced this. Mind you we are still waiting for
An oncology appointment. We were told we would receive a letter, we haven't yet , told
An oncologist would ring, not a word, maybe Xmas hadn't helped but think they will
Be getting a call soon. Certainly didn't help when we booked in at a & e and were informed
That according to their computer system Steve was still an inpatient on a ward and had
Been since 11th dec. this was the day he had his biopsy and he was only on ward a few hours
Slightly worrying

not sure what 2014 has in store but I send all my best wishes to everyone on this forum

cheryl xxx

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

Re: Devastated

Postby J_T » Tue Dec 31, 2013 8:47 pm

Cheryl, I would get on to PALS straight away. Who is running that hospital? Words fail me.

With regard to DVT. Ray had bi-lateral DVTs, ie in both legs, he was having his chemotherapy a few days later so I don't see why it should stop Steve's treatment. In fact quite a few people on here have DVTs, its quite common in PC and as far as I know it hasn't stopped anyone's treatment.


HNY
Juliax

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

Re: Devastated

Postby Cathy » Wed Jan 01, 2014 12:50 pm

Hi Cheryl

My partner had a blood clot in a vein in his arm earlier in 2013 and started on clexane. This didn't stop chemo.

However, more recently he has had clots in arteries in his leg and needed ops (2 of them) to remove the clots which were quite big operations. He needed ops as clots had stopped blood supply and could have meant he would lose his leg. This HAS stopped the chemo until the op wound heals and as they felt that restarting chemo so soon might cause another clot.

It might be worth your asking for a 2nd opinion if the clot was in a vein. I think it's quite unusual to need to stop chemo for that.

Cathy xx

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

Re: Devastated

Postby cestrian » Wed Jan 01, 2014 1:20 pm

Hi Cheryl

I have droned on about the pain relief operation that I had last June ad nauseam but I do thoroughly recommend that if Steve is well enough and is suffering severe abdominal and back pain that you ask about this. I do put my own good progress down to being pain free as constant pain or the use of morphine or other drugs can be quite debilitating. My own procedure was done via Key Hole surgery but I believe that this is only available in certain areas but still worth pursuing for the benefits it bestows.

I also had a clot but on my lung and this did not interrupt my treatment at all and I still have to have daily injections of Tanzeparin to thin my blood as PC and Chemo can cause clotting.

Good Luck and may your God go with you

Love and Peace

Mike

PCUK Nurse Jeni
Posts: 1074
Joined: Mon Jun 14, 2010 1:30 pm

Re: Devastated

Postby PCUK Nurse Jeni » Thu Jan 02, 2014 10:29 am

Well done to all the forum family again!

You are all correct - a DVT should not stop treatment starting (chemotherapy). As long as there has been treatment started for the clot, then chemo should be able to go ahead no problem. As others have said here, many people with pancreatic cancer get clots of some sort, and are put on injections usually, as this is the most efficient way to treat them when you are on chemo. It is not a good idea to have warfarin as this interacts with almost everything else you can think of, especially chemo, hence the injections.

Jeni.

Charney22
Posts: 21
Joined: Tue Dec 31, 2013 6:47 pm

Re: Devastated

Postby Charney22 » Thu Jan 02, 2014 11:28 am

Hi all
thankyou for your replies, puts my mind at rest,
as to when his chemo will start is anyones guess at the
moment, I will be contacting our consultant secretary today
to find out what is happening. thanks mike for your comment
on the nerve op, our consultant did mention this to steve as an
option so steve is going to ask about it when we finally get
our appointment.

Cheryl xxxxxxxxx

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

Re: Devastated

Postby cestrian » Thu Jan 02, 2014 3:54 pm

Hi Cheryl

Cannot recommend it highly enough,particularly if Steve can get it done as a key hole procedure as I did. It just made such an amazing improvement to my quality of life as I was able to come off all pain relief almost immediately. I had no problems at all and the abdominal and back pain was halted in its tracks! Bilateral thoracic splanchnicectomy as far as I can decipher on my consent form! Done under general anaesthetic but as day surgery so I was not kept in overnight though have sometimes wondered if that might have been no bad thing. I think you do have to realise this is real surgery even though nothing like the more serious operations some undergo.Each lung is collapsed in turn to allow access and then reflated so only a couple or three minor insertions on the back. I had this on a Tuesday followed by liver biopsy on the Friday and then wondered why I was frazzled!!

Love and Peace

Mike

Charney22
Posts: 21
Joined: Tue Dec 31, 2013 6:47 pm

Re: Devastated

Postby Charney22 » Fri Jan 24, 2014 3:55 am

My lovely husband is hospital . He had the celiac nerve block last Wednesday
Which did absolutely nothing for his pain, in fact his back pain was worse
He had got his chemo appointment date sent, not til end of the month, two months
Almost from diagnosis. His consultant surgeon who performed the block said this
Was not good enough and he would try to move it forward. And oncology would ring
Us 4days passed no one rang. Our gp contacted Steve s oncologist and eventually
They rang for Steve to see him., we went Wednesday this week and he was admitted
There and then. We were told the horrendous news yesterday that the tumor is causing
A bleed in an artery nr the liver, he has been taken off all blood thinning meds. But he also
Has blood clots in his lungs which need these thinners, they cannot treat both problems so
They are not going to treat the clots, and no chemo. Just a case of palliative care to keep
Him out if pain. two months from diagnosis and he hasn't been given a chance to fight
It. If they had rung us before Xmas as we were told and chemo would have
Started beginning if January who knows I feel so let down by the hospital right now , too many hiccups.
cheryl xxxxxx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Devastated

Postby Didge » Fri Jan 24, 2014 8:22 am

I am so sorry to hear this. I am afraid a lot of us are plagued with 'what ifs' - in my bf's case the first big one was how come the GP didn't diagnose it months ago or even a year ago when all us lay people diagnosed it with one google! I will be thinking of you xxx

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

Re: Devastated

Postby cestrian » Fri Jan 24, 2014 8:34 am

Hi Cheryl

So sorry to hear of Steve's difficulties and his latest setbacks are a real kick in the teeth for you both. My sincere good wishes for the successful treatment of his internal bleeding so they can continue with his blood thinners to disperse the clots and get on with his chemo.

It is so distressing when it seems the professionals have failed to give a fellow sufferer every possible chance to fight this disease but alas it carries with it so many of these damned complications that seem so often to hit us at the worst possible time. Keep the faith Cheryl, I'm sure Steve really values and relies on your support and I know how hard it must be for you to stay strong in the face of so much bad news.

Love and Peace

Mike

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

Re: Devastated

Postby J_T » Fri Jan 24, 2014 9:26 am

Yes Cheryl, I echo what Mike says. It seems all too often patients are badly let down, I don't know what the answer is but it's so shocking to me.

Hoping they can get Steve's bleed sorted so he get started on some treatment.

Julia x

laura
Posts: 385
Joined: Thu Jul 01, 2010 1:53 pm

Re: Devastated

Postby laura » Sat Jan 25, 2014 8:34 pm

my dear cheryl, i could not, not reply to your post. i just do not know what to say to you, my love to you both, and so many whishes of strength coming your way, it just HAS to get better for you both.

hear we/i are 4 years from diagnosis, and so many of you are relaying horrifying scenarios, have things not improved at all in the last 4 years concerning better diagnostic outcomes????

truly, all my fellow patients /posters/ carers, i wish you all so much luck care and peace, i feel so humbled. laura xxxx

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

Re: Devastated

Postby Cathy » Sun Jan 26, 2014 10:49 am

Hi Cheryl

I feel for you.

I just hope that the bleed is resolved quickly so Steve can get back on track with his treatment.

Cathy xx