A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

What the <expletive deleted> is going on?!?!

Postby Nardobd » Wed Aug 11, 2010 7:40 pm

Ted has been back on chemo for about a month because his tumour markers were rocketting. He had been getting a little more pain and feeling generally less well too, although the CAT scan showed no real change. I asked for a PET scan but this was brushed aside, the consultant saying he would only do a PET scan if Ted was having radiotherapy (which he doesn't want to do).

After a couple of weeks he started feeling less pain.

He went to see his consultant on Monday only to find that the tumour markers had shot down by 700 in one month. Don't get me wrong - I'm grateful and glad, but there's something not right here. In my experience chemo doesn't have an effect so marked, so quickly. Ted's feeling so much better and the tumour markers have always been a reliable indication for him. I've done enough research to know that this is very unusual and although I'm grateful there's an underlying worry that because it's "abmornal" there's another problem which isn't being addressed.

Does anyone have any bright ideas?

How is everyone else getting on? - Do keep us up to date with what's happening (good or bad)

Nicki

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: What the <expletive deleted> is going on?!?!

Postby Ellie » Wed Aug 11, 2010 10:14 pm

Hi Nicki

Glad to hear that Ted is feeling much better, even if you are confused!

None of the doctors/oncologists that we've seen have ever seemed concerned about tumour markers with Brian. I asked what his was only yesterday and the hospice doctor said they don't take too much notice as a small tumour can show a high marker and a large tumour a small marker, so they don't feel they give an accurate indication of what is going on. I know you have always been given more information than we have, so obviously it concerns you more when the numbers go up or down.

I hope you get an answer to the situation but if Ted is feeling better in himself, that can only be good news for now. Hope he continues to improve.

Love
Ellie
xx

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: What the <expletive deleted> is going on?!?!

Postby Nardobd » Sun Aug 15, 2010 7:41 pm

Thanks both of you. This kind of volitile movement in the CA19-9 is not something I've come across before and the reassurance is just what I need.

Nicki x

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: What the <expletive deleted> is going on?!?!

Postby clair2305 » Sat Sep 25, 2010 10:08 am

Hi Nicki

just wondering how you and Ted are?

CA19-9 tests are a trial to understand in themselves aren't they! I know Blue's oncologist says they are just one indicator and along with other indicators, eg CT scans, they make up the whole picture. I know when Blue's first CT scan showed progression that wasn't really progression because the tumours in the liver had grown in the month from having the first CT scan and chemo starting, they used the CA19 tests as an indicator, as they were falling. So really they are just part of the puzzle.

Lots of love

Clair

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: What the <expletive deleted> is going on?!?!

Postby Nardobd » Sun Sep 26, 2010 8:31 am

Hi Clair, Ellie, Juliana et al

Sorry, I know I haven't been posting much. There is a reason but it's sensitive. Suffice to say that PCUK are aware and doing something.

Ted is ok...up and down, like all patients. He has a scan next week and then a consultant's appointment on 4 October so we'll know more then. In the meantime his CA19-9 is reducing and we're hopeful that the chemo is helping.

How are all of you? I've read the latest posts and was sorry to hear that Blue and Brian were in so much pain.

Love
Nicki

clair2305
Posts: 154
Joined: Thu Aug 13, 2009 1:43 pm

Re: What the <expletive deleted> is going on?!?!

Postby clair2305 » Mon Sep 27, 2010 8:31 am

Nicki

sorry to hear there is an issue for PCUK to resolve for you. You are and have been a great support to me over the last 15 months and it would be a shame to lose you from the forum.

Fingers crossed for the CT scan, keep us updated.

Lots of love

Clair

emcee46
Posts: 31
Joined: Wed Feb 18, 2009 9:39 am

Re: What the <expletive deleted> is going on?!?!

Postby emcee46 » Thu Sep 30, 2010 10:13 pm

Hi Nicky ...

Can't add any more useful info. to this forum any more since the loss of my Dane in June ... but my heart is with all of you still fighting on. The only thing I can say is that, given that my girl had a really nasty version (the adenosquamous one) it must give a lot of hope to everyone that she didn't pass from the cancer sixteen months after diagnosis, but from the equally pernicious cachexia (basic malnutrition plus the accompaniments). Burst blood vessel and too weak to take effective action. Never forget that there are other enemies at the door - and the tumour(s) are getting to be the least of the worries in a lot of cases!
If anyone thinks my experiences in losing Ane with the above and, previously, my wife in 1995 to renal cancer, may assist them in their own fight, please drop me a line [[Moderator: address removed**]] and I'd be happy to try and help.

Love and best wishes to you all ...

Mark H.

[[**If any registered board user would like to have direct contact with Mark, please email us via moderator@pancreaticcancer.org.uk and we will forward your request. Thanks, Vee]]

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: What the <expletive deleted> is going on?!?!

Postby Nardobd » Mon Oct 04, 2010 1:27 pm

There's so many of you out there having really bad times at the moment, I'm almost hesitant to post our good news...

Ted's tumour markers continue to drop (now at 129 down from 1200) and this latest scan shows a slightly more defined and slightly smaller abnormal area of tissue in the pancreas. There are no mets (spread) to anywhere else in his body and the consultant is keen to simply continue the chemo for another three months unless the side effects get too extreme.

19 montbs on from original diagnosis Ted has officially been labelled "abnormal" by his consultant, who today said "It just goes to show how much we don't know"!

For anyone interested Ted has been using a small amount of complementary medicines in addition to gemcitabine chemotherapy, as follows: Omega 3 (one of the fish oils which some researchers think can help), Lemon balm (for mental calmness and strength), papaya fruit (mentioned in other threads on the forum). I've encouraged his positive attitude and determination to beat this disease throughout, which i think helps too and we've generally adopted a healthier diet than previously (nothing extreme - just thinking about what we eat and trying to cut down fats etc).

I'm not sure whether any or all of that has contributed to his progress so far. All I know is that I'm very, very grateful for our news today and I hope that this message gives hope and inspiration to others.

Love
Nicki x

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: What the <expletive deleted> is going on?!?!

Postby Ellie » Mon Oct 04, 2010 8:38 pm

Oh Nicki, what wonderful news for you both!! I am so very glad that someone is having some good luck and beating the odds! I know there are no guarantees, but to know that Ted's tumour has shrunk and there is no spread - that has to be great news in anyone's book!

When you think that Brian was "lucky" enough to have had a whipple and told he should be ok, but then it spread, and Ted was told they couldn't operate on his tumour and given a few months, yet here he is doing so well , it really does show that you can't simply give up when you get bad news. There doesn't seem to be any rhyme or reason to this cancer. I'm not being bitter when I say any of this - just trying to emphasise to anyone who has recently been diagnosed that you HAVE to stay positive and try to fight for as long as possible.

Don't want to spoil your good news though, so will just say - that I really am pleased that things are going so well. Good for you and Ted!!

Lots of love
Ellie
xxx

Juliana
Posts: 178
Joined: Thu Sep 25, 2008 1:36 pm

Re: What the <expletive deleted> is going on?!?!

Postby Juliana » Tue Oct 05, 2010 6:51 pm

Oh Nicki, that's just fantastic news. I am so happy for you both, you have both been through so much so this must be even sweeter with all the highs and lows.
Everything hinges on results - to get some good news makes a world of difference, life is lighter and the future feels realistic and attainable.

Sending you both a *big hug*

Juliana