Message for Juliana/Lily

Hi again to both of you and it's great to 'see' you back on the board. As and when you feel up to it, Juliana, do let us know how you're getting on.

Lily, again only if you feel able to do so, please let us know how Trevor is doing.

Hi all,

I have been reading the boards daily and realising how much (more) uncertainty there is around this particular type of cancer. Unfortunately, the forum seems to have become very busy again and I am thinking back now to the time when Trevor was diagnosed and how angry and upset I was because I felt that enough hadn't been done. I hope that the new members find the site as useful as I did at a very traumatic time.

I myself have not replied to the question (but very thoughtful of you to ask) because we were going through what feels like Scene 101 Act 27 in this very arduous drama which has more twists and turns than I can cope with. Just to recap (like all good serials...): Trevor diagnosed with Kidney Cancer (now 3 years+ ago), expecting 'all clear' last April to be told that there was 'something' on the pancreas, long investigation and given the definitive 'all clear' at the beginning of June, then sent to XX who told us it wasn't all clear and that he needed a splenectomy and total pancreatectomy, op planned for 12/8 but aborted due to arterial involvement, 10 days later T diagnosed with pancreatic adenocarcinoma, 12/9 starts on GemCap having been told that it was terminal and to get our finances in order, 6 months on told that tumours were stable but no radio as there were too many of them (this was new news), then told that kidney function seriously impaired and needed immediate hospitalisation and that also they would check to see if it was neuroendocrine (i.e. 6 months of the hated, wasted chemo), an almost 2 weeks stay did not uncover anything apart from hypertension (200+/90-100) and poor creatinine clearance, sent home with BP tablets, so....

All the time I have read others stories and thought 'this isn't him': his appetite is very good, he's not that tired, he still works every day and (apart from the swollen ankles), he looks (to me) fabulous...OK he has off days but don't we all. So I was hoping that it was neuroendocrine but knew it was a long shot. So when we walked into the Oncologist last Thursday and saw the Nurse Specialist there, I was expecting the worse but when the Oncologist shook both our hands (never before) I began to feel suspicious. I had all my questions prepared re. the possibility that it was non-functioning neuroendocrine but they all fell by the way side when we were told that they 'didn't think it was PC but mets from his renal cell'!!!!???? On top of that we were told that the tumours (that were previously stable) had grown between Dec and Feb. So without any new pathology or scans we have a completely different picture of the tumour and its (probable) diagnosis. Now on the one hand this could be good news BUT when I suggested this, I was given a strained smile. I didn't know how to feel: angry, relieved, confused but mostly numb. So much more could have been done last August and in the process the 'wrong' chemo has damaged his only kidney. I know that it's not an exact science but this just feels wrong. We may not be able to treat the Renal Cell now and the tumour only needed to shrink 1cm last August which we are now informed Sutent would probably have done.

We are awaiting an appointment at the xx to get another biopsy to confirm their theory, so I am not holding my breath until that is done. We feel spent but having also been truthful with the children and kept them informed and answered their questions including the 'big one' (OK we didn't say 'yes' but we did say that we would like to say 'no' but couldn't) we don't quite know how to play this one and I can't find the FAQ that guides you on 'what to say to your kids if you've told them one thing but have (potentially) been misdiagnosed but actually may find yourself no better off than before' (apologies for my flippancy but heck, sometimes it helps...

Signing out with hope and trepidation for our personal journey and my thoughts and hope for those of you and your families who read and contribute to the site.

I will keep you posted of any developments x

My Goodness Lily - it reads almost like fiction!! Whatever the outcome at the xx, let's hope that they can help Trevor and that the ultimate outcome is possibly better than you'd been led to believe.

I think in your position I'd wait until I had the results of the biopsy before broaching the subject with the children. It would be bad enough to tell them that the doctors had got in wrong once but then if they decide that it is pc to have to go back and say "no they were right the first time" would be tremendously confusing and traumatic - I'm sure it's bad enough for you and Trevor, let alone the little ones.

Yes, do keep us updated as and when you know any more. You're part of our little "family" now and we do want to know.

Best wishes and my thoughts are with you.

Nicki

Hiya Nicki,

Sorry I haven't posted. Been too ill, and too busy with kids birthdays and chicken pox :S

Will post tomorrow evening as I should have some info to share after my meeting in the afternoon with my oncologist - wish me luck.

Juliana x

Hi all,

Ok - had my appt with the oncologist.

Basically he is pleased with the Barium xray results as it shows no kinks/adhesions etc - but he says that due to the extreme amount of pain I am in he cannot rule it out totally and we need to do further tests.

So, they are going to discuss with my surgeon these options: Laparoscopy, ERCP (endescopy) and a Celiac Plexus Block (for pain relief). I should know within the next couple of days which route they want to take.

I also discussed my diet, I had to ditch the vegan diet as there were not enough calories in it and as I was losing weight rapidly (which I hadn't done whilst previously being on the diet) I was advised to return to a more balanced, more calorific if possible, diet. Which I have done, but unfortunately my weight loss continues - I am just holding on to the 7st mark atm.

As I've stopped all supplements, the only thing going into my system is food - and my enzymes. So I asked if there could be an issue with the enzymes. They said some patients found the enteric coating to be a problem, but not to the point where it causes pain and discomfort or weight loss.....however....everyone is different. So I asked if I could try something else, so hopefully today I will pick up some new enzymes to try - how funny would it be that it was the Creon all along eh? (wouldn't that be great though?!)

I also have some bloods to be taken, I am bruising quite extensively - even to the point where my ribs on one side of my body were all bruised and I couldn't understand why. Then one night I woke up, uncomfortable ache in my side....and realised it was a spare small button sewn into the label in the side of my pyjama top......talk about Princess and the Pea! That's how delicate I've become though....how annoying! I am predicting an increase in my CA19-9 - so watch this space....last reading in February was 30.....my guess for April is: 57. They are also testing my abnormally high B12 - however, they have said they have no idea what this means or what to do about it. Anyway....I will post results as soon as.

Sorry for my sporadic presence on the forums atm - too tired most of the time, or too busy with kiddies that are unwell - two little ones definately have chicken pox, so have my hands full. Plus I have a friend staying for 2 weeks (arranged months ago) so enjoying some adult chat in the evening.....what a novelty!

Hope you guys and gals are doing ok.....there have been some heartbreaking new posts on the site and I see you have responded quickly and sympathetically xxx

Thanks for asking after me and I'll log on soon,

Juliana x

Hi Juliana

Let's hope the further tests are as pleasing as the Barium results.

I'm sorry to hear you're having trouble maintaining weight (being flippant for a mo, you could have half of mine if you can persuade them to transplant it!). In a strange way I really hope it is the Creon - at least it would be a solvable problem!

Don't worry about infrequent forum visits - just let us know how you're getting on when you feel up to it. You have so much to deal with anyway and I know what you mean about there not being enough hours in the day.

I hope you're wrong about the CA19-9 but do let us know what the results are in due course.

Speak to you soon.

Nicki

Hi Lily

What a performance you have had. Your head must be spinning! I always found that the worst part was waiting for tests/results etc. That used to stress me out the most. I truly hope that you have better news when you finally do hear something definite.

Keeping everything crossed for you. Stay strong and positive!

Love

Ellie

x

Hi Juliana

So sorry to hear that you're still having a tough time of it. Not only you, but the little ones, too. You must be shattered, trying to sort yourself out, as well as them.

Thinking of you, sending you love and hoping and praying that your results won't be as bad as you are expecting.

Look after yourself.

Love

Ellie

xx

Hiya Juliana

nice to see you back on the forum again, don't apologise for your lack of presence, with two kiddies and some nice weather (finally) who wants to sit in front of a computer. You are always in my thoughts and I;m glad to hear that the barium results were good.

I hope the enzymes help with your weight loss, have you tried Fortisip as well. I'm sure you have, but they did help Blue as well as the creation of a stash cupboard, chocolate, dried papaya, biscuits and anything he fancies when we go shopping (although he ate my white buttons yesterday and I'm still reeling )

Nice to hear from you again.

Clair