The next stage of the rollercoaster!

It seems like such alot has happened since I last posted on here. As you know after being told on his post chemo scan that all looked clear, my dads tumor marker kept rising, after several more scans a teeny tiny lesion was found on his liver at the ensd of November. we were told this by the radiologist we had gone to see about radiotherapy to the seat of the pancreas, he then proceeded to tell us that in these cases they measured lifespan in months rather than years and if pushed he would guess 6 months, just what we needed to hear the week before christmas! We then went back to see our lovely oncologist who said that there was a new treatment in second stage trials called abraxane which has caused a bit of a stir in the PC world ( an old chemo drug commonly used for breast and ovarian cancer presented in a new way to reduce side effects.) AS he had private health cover he suggested we applied for it and wait and see if they approved the application, they didn't, so we concentrated on having the best christmas we could under the circumstances and booking a holiday for the whole family. In the meantime unknown to us my mum had written to BUPA and goodness only knows what she said because we had a call just after new year to say that BUPA had reviewed the application and we could go ahead. My dad at this point is so well that it is hard to believe there is anything wrong with him, so decides that before he starts any more chemo he wants his holiday. On thje 16th January we went to Barbados for the most amazing two week holiday with my husband and children and my sister her husband and their children and mum and dad, everything was perfect and there was not a sign of illness, on our return he had another scan which showed very little growth of the lesion on his liver and thankfully at the moment no more have appeared (it measures 5mm). e started a new course of chemo on Tues 16th Feb (Abraxane and Gemcetabine) and we will see how he tolerates it and what effect it has on the tumor. I know miracles don@t often happen but at least we now have a little bit of hope for a bit longer.

I can't believe it's been a year since he was diagnosed, it sometimes feels like yesterday and sometimes like 100 years!

Thinking of you all.

LOts of love and Best wishes

Emma xx

Dear Emma

You must be feeling so positive now and i hope that your lovely holiday will stay fresh in your minds and give you the strength to get your dad onwards and upwards through his next round of treatment. I also know of a couple of people with tiny lesions on the liver which grew very slowly and didn't cause a problem at all. The thing is that it has been spotted and the medics can keep an eye on it. I think the oncologist may be jumping the gun a bit with his prognosis. My mum's cancer markers stayed quite low until close to the end yet she was very poorly indeed throughout the course of the disease (12 months from start to finish in her case). The cancer never spread to her liver, yet her bowels and pelvic area were fused with tumours - which were never picked up on the various scans, it was only when they opened her up to perform an emergency colostomy that they found them. I suppose the point I'm attempting to make is that she felt really ill and was in awful pain and as it turned out the cancer was progressing very rapidly, but the scans and blood tests didn't indicate that at all, in fact we were told on countless occasions that her condition was very stable.

It's how your dad feels that really matters.

good luck with the treatment, hope he tolerates it well.

Hi Emma,

So glad your Dad is in good health and able to enjoy the holiday, and have something to focus on with the new treatment.

I too thought 6months was a bit harsh, considering the lesion is so small - but each oncologist has their own way of working out a prognosis - it's much easier to go by how the patient is 'feeling' in themselves.

I hope your Dad tolerates his new treatment, and that it has a positive effect on the lesion. Keep us posted!

For chinup: sounds like your Mum went through it, bless - how did they not see the tumors from the scans....? What type of scans did she have, were they CT or MRi? CT is supposed to be very good for stomach and intestine, did they give a reason as to why they didn't show at all? Any info would be really helpful as I know all too well what it's like to rely on scans and bloods only to have the whole world turned upside down regardless of it all.

Kind regards,

Juliana

Hello Juliana

Nice to talk to you, and so glad you enjoyed your holiday so much, Gran Canaria is a favourite of ours for a bit of rest and relaxation!

I've just read about the results of your scan which sounded very favourable and I'm sure that I will be the first of many on this website who will be very pleased indeed for you, because you are one brave and inspirational lady.

Mum's early scan (for the diagnosis) showed a small mass (2.5 cm) on the tail of her pancreas which was inoperable so she started on chemotherapy (same cocktail as most people here). Her CT scan after 3 months, 5 months and about 7 months showed no change in the size of the original tumour and no change in something 'suspect' on her ovary. Her pancreatic cancer markers (blood) remained the same. As I mentioned she was never well, in debilitating pain which we always put down to problems caused by an inactive bowel due to the morphine. That pain remained constant, came and went with varying degrees of severity in the same areas (basically bowels, low down and back pain, plus pain round the bottom of her shoulder blades.) The morphine never really shifted it. After about 9 months she started complaining of a different sort of pain very low down, she described it as being in her bottom and made it hard to sit down. She went for another scan at around 10 months and they said that there was still no change although the pancreatic markers had risen slightly. Over the next few weeks she got more and more swollen up and couldn't eat or drink - her stomach was huge, her legs and feet swelled up aswell. She was in hospital at this stage and they said that from an Xray they could see that her bowel was blocked but they didn't know why - they took the wait and see approach giving her endless enemas to try and clear the blockage but in the end they had to rush her down for emergency surgery to bypass the blockage with a colostomy. (It was during the operation that they saw all the tumour mass in her pelvis). I'm pretty certain that she didn't have another CT scan at this stage, only the xray, but I cannot be certain.

I then asked the question why did all the tumour mass not show up on the earlier CT scan (which was only weeks before) and I was told that it was because mum's bowel was full from top to bottom with faeces and she had pockets of diverticulitis which made it very difficult to distinguish what was going on but that as far as they could tell, there was no new growth. I honestly couldn't get my head round that - because in effect they were saying that all the new cancer had appeared over a matter of 3 weeks. But I'm no expert and maybe what they said was accurate - they certainly were looking around the lower part of her abdomen during the scans because they were watching the ovary. And they were thorough, too, they picked up a blood clot on her lungs at the 5 month scan.

If I were you I would be very confident that the information you have been given as a result of your scan is pretty well accurate and that the medics are being very thorough. I know you will be worried by your continued pain but it is very likely to be down to digestion and I know from experience with mum that getting that right is hit and miss. Keep strong and positive, keep doing nice things, enjoy your family and keep your mind firmly on the very good news you received yesterday.

All the best XX

Hi Emma

I don't know whether the right analogy is a rollercoaster or a trampoline - Ted and I certainly have so many ups and downs that we sometimes don't even know what to feel! I'm so pleased, though, that there is a new treatment which your Dad can try and I hope it proves to be beneficial without too many side-effects.

Kind regards

Nicki

Well he has had two treatments now, he had to miss last week as his blood counts were too low. He seems ok in himself, he has had no nausea and the fatigue so far doesn't seem too bad, I appreciate that these drugs have a cumulative effect but so far so good. He is however losing his hair which didn@t happen on the Gem/Cap, psychologically I think he is finding this a bit tough. Does anyone have any advice on how to cope with this one? Thanks for all your support I really don@t think I could have coped this last year without the help and advice I've found on here. Big Hugs, Em x

When Ted suffered hair thinning on Gemcitabine, I teased him that at least he looked a little less like a mad professor! I think if your Dad is sensitive about it you can use one of the comments on the JHU board - the hair will grow back. In the meantime, perhaps he or you could invest in some nice hats which would help his self-confidence when out of the house.

Nicki

Emma

like Juliana said, keep us posted and I hope this treatment is going well for your Dad.

As for hair loss, Blue had very slight thinning (on his legs too haha) and I bought him baby shampoo which seems to have kept the thinning to a minimum. I think I saw it recommended on the MacMillan website, but can't be sure.

Take care.

Clair

Thank you so much everyone! As it is most of his hair has gone, he also seems to have come out in a lot of spots on his head which is a bit odd! We are at the hospital for chemo tomorrow and hopefully they will have his CA 19-9 results from last months treatment. Thanks again for all your kind words and advice. Catch up soon E xx

Let us know how you get on tomorrow Emma

Kind regards

Nicki

Hi Nicki, Not too bad as it goes thank you! Blood count OK and liverr function normal, no news on the tumor marker but the consultant doesn't seem to be interested in it until the end of this cycle when they will scan again The spots on his head and chest they think is follicleitis( not sure how to spell it bit basically inflammation of the hair follicles) he was given antihistamine and antibiotics. Other than this he is doing well, yesterday he helped put a roof on the extension so can't be too bad I guess? How are things with you? X

Glad to hear that it's not too bad Emma. Ted and I are both ok thanks. Like everyone he has good and bad days but thankfully the good outnumber the bad by some way at the moment.

Keep us up to date with news on your Dad

Nicki x

Hey Emma

Can you tell me where your dad is having Abraxane/Gemcitabine and how he is getting on? Do you know if others are getting this as I have only read about the USA trials.

Presswatch

Hi Emma

was wondering how your Dad was coping with the Abraxane trial. This seems to be a very new trial inthe UK and I think many of us are excited about it.

Take care

Clair

Hi all!

Sorry it has been a while since I posted but things have been a bit hectic at home with building work etc...As for the Abraxane, all seems to be going as well as we could hope for, the folliculitis has gone so he isn't itchy anymore. He had a scan at the end of his second cycle which showed a reduction of 20% in the tumor size which is fantastic news. His CA19-9 levels had dropped from the 800 mark to around 100, so the chemo it appears is doing it's job. He is finding the regime quite tough and doesn't usually make the 3rd week as his blood count is too low. He will have another scan at the end of his next cycle to see how things are going. Psychologically he was struggling with the first two cycles as it was making him feel very tired and fragile, although after his scan he does seem to be in a slightly better place mentally. Still a long journey ahead of us and nobody seems to be too clear as to how long he will be on the Abraxane for or what the best case scenario will be, there has been mention of if the tumour is shrunk significantly they may try to remove it but alot of if's and but's at the moment

At the moment we are in the process of converting a building into a bungalow for them and we will move into their house as they run a busy business and have a fair amount of grounds to look after. I think this has been great for him to have something to focus on and we are looking forward to spending that quality time with them. The only thing that worries me slightly is the children and how they will cope if he gets very bad, but I think the benefits will outweigh anything else and we need to live for today where he is reasonably well.

With much love Emma xx

Hi Emma

20% reduction in tumour size is great news, great to hear this.

Hopefully the sunny weather will help you conver the building for your parents...Friday is meant to be Fry-day apparently.

Take care

Clair

Hi Emma,

Amazing news - so lovely to hear something positive for a change.

You will find your Dad will have a renewed zeal for the treatment - now that he knows it's actually working. Chemo is soooooooo hard to do when the specialist tell you 'we're not sure whether it will help or not....'.

Best of luck with the build.....sounds exciting A great project to keep your mind off other things.

Take care,

Juliana

Hi Emma

Great news for your Dad and the whole family. I really hope things continue to improve.

Hope the build goes well too.

Keep us up to date on both counts.

Nicki xx

Hi again!

Well we got results of the second scan yesterday, good news again! Tumour has shrunk by 30% and CA19-9 levels are at 35. We had all managed to convince ourselves it wasn@t working as his hair has bizarrly started to grow back< so we were a bit shocked by the results. He will now have another 2 cycles and if the result is again positive they will look at radiotherapy at that point. Still such a rollercoaster of emotions but trying to enjoy the up's as much as we can! The building is nearly finished so if we could only sell our house we can enjoy our quality time!

With much love to you all as always

Emma x

Emma

it is so great to hear your Dad's news....is that another 30% or 30% in total. It's great news anyhow.

And I'm glad this warm weather is helping get the building works completed....fingers crossed for a speedy sale of your house.

I wondered if you could tell me where your Dad is having his Abraxane. I know it's through Bupa but just wondered where in the UK (just the region, don't want all your personal details) . My husband is not being offered anymore treatment and I know, from telephone conversations and emails to a research oncologist at Cambridge Research Institute that he also feels Abraxane is the way to go here in the UK, but I know it's not used within the NHS (only for breast cancer I think).

To be honest if it is felt that Abraxane would suit my hubby and I could pay for it (I know our family and friends would help too) then it's something I'd like to pursue.

Best wishes to you and your family.

Clair

Hi Emma

Glad to hear that the good news continues.

Kind regards

Nicki xx

Hi! He is having his treatment in xx under a brilliant consultant. The tumour has shrunk by a further 30% so eith my bad maths i think its about 60% in total. he has had a few blips with this cycle as his liver function test wasn't good last week but this week seems better so he will continue to have one more month of treatment then they have suggested microwave ablation of the tumour which I dont know much about. I'm happy to give yopu any details Clair that may help. When we were unsure if he would get treatment a friend who works for a large pharmaceutical company suggested contacting the company who make abraxane directly?

Hi Emma

thanks for your reply. I'm so pleased to hear your Dad is doing well. What's the latest?

I spoke to Blue's consultant about this and he is going to contact his colleague Dr xx at xx ....(I just said that on the PCUK forum there was someone having abraxane through xx in xx), I wonder if that is the brilliant consultant you are referring to.

I have emailed the European email address Abraxis Bioscience, listed on their website (the manufacturer's of Abraxane) twice and have had no response as yet!!! I wonder if that is down to them being bought by Celgene and the takeover means that staff are responding???? If you or anyone else knows any contact information for them I'd be grateful.

Best Wishes.

Clair

Hi Clair

Sorry It's been so long to reply but true to form we have had a bit of an up and down few weeks! It is dr xx that my dad is under. Let us know how you are getting on? Am happy to go into more detail via a private message if I can be of any help? x

Hi Emma

yes, we've had a few down weeks, no ups yet. I will update my thread. I know Blue's oncologist, Professor XXX , spoke to XXX and we are discussing Abraxane further, have another appointment next Tuesday. It would be nice to have some more detail via private message. How does this work on here?

Clair