Chemo for new diagnosis

[Valerieno1]

Hello I am new to this sight. I had a whipple 2009 with no follow up chemo In 2012 my blood markers started to climb but I have had c t scans every 10 weeks and they have been clear but in the last 2 weeks I have been told the cancer is back in the same place outside the head of the pancreas where the ampulla is they suspect it has spread to the liver I will have a Mir scan on Tuesday . Over the years I have read a lot about this horrible cancer and have no experience about chemo I am 72 in May . Is there any point in having chemo what would they expect to be able to do. Would it just prolong the my life by a few weeks my husband is devastated please help. Valerie Xxxxxx

[rsk1974]

Big hugs, must be terrifying for you all, only you can decide with your consultant whether you want the chemo. My dad had chemo following his whipple, he seemed tobauffer from side effects then they changed the chemo and he was okay on It. He would have tried anything and sadly for us even in the last week's we had with him he still wanted to try more chemo. It is such a personal decision and whatever you choose will be the right answer. Good luck.x

[rsk1974]

Big hugs, must be terrifying for you all, only you can decide with your consultant whether you want the chemo. My dad had chemo following his whipple, he seemed tobauffer from side effects then they changed the chemo and he was okay on It. He would have tried anything and sadly for us even in the last week's we had with him he still wanted to try more chemo. It is such a personal decision and whatever you choose will be the right answer. Good luck.x

[Didge]

Hello Valerie. This is a very personal choice. But first you need to consider how aggressive the cancer was/is (is it adenocarcinoma which is the most usual type?) or the rarer and usually slower islet cell or neuroendocrine. The fact that you have kept well for for so many years is very encouraging and even when your markers started to rise, here we are 3 years later! Chemo can help people last seemingly a lot longer and some have minimal side effects. On the other hand if you see no point, you can google alternative things like diet and see if that appeals to you as a more gentle approach to try to keep you as well as possible. The nurses here can give you good advice too but in the end it must be your choice what course you follow. If you are fit and healthy, age should be no bar to being offered chemo. Let us know how you get on! xxx

[J_T]

Hello Valerie, I can't imagine how difficult it must have been to hear those words. You will no doubt have a long discussion with your oncologist about what to do next and as others have said, that is a very personal choice. Everyone reacts so differently, to the disease itself, and to the treatments.

An example is Brian, whose wife posted today about his progress. He was diagnosed in 2010 had a failed Whipple and had Gemcap chemo and is still doing well today. Others fair not so well. There are others on the forum beating the odds and tolerating the treatment well. Some have undergone newer, but private treatments, ie Nanoknife with some success. I am sure your team will explain the pros and cons and what to expect, go with a list of questions.

Very best of luck to you.

Julia x

[Valerieno1]

Hello thank you for your post. I would like to hear some positive stories of people who have had chemo and it has worked even if for a littlle time I have a loving husband and two children and two grand children who are willing me on to have the chemo and fight perhaps I could try some and see if the side effects are too much to bear . I need a lot of information from my oncologist but it is so important too hear from the people who have been through it. Love Valerie

[Slewis7313]

Hi Valerie, sorry to hear that your illness has spread and you now find yourself seeking the best way forward. Whilst the decision is indeed a very personal one, I have taken chemo whenever I could with really good results. I am 60 years old and was diagnosed inoperable in December 2012. I initially had 3 months of GemCap (Gemcitabine in conjunction with oral Capacitabine). This was followed by 28 radiotherapy session, which resulted in a size reduction in my tumour, but it remained inoperable. I then had 10 months of no symptoms at all and no treatment. (During this time I had a failed Whipples in Germany). In May of 2014, my Tumour Marker increased dramatically into the thousands, with scans confirming it had spread to my Liver. I had in fact started to slow down a bit and feel very tired at the time, but no other symptoms. I started Folfirinox in June 2014 and am still on that regime, starting cycle 19 this Wenesday. The first few cycles were difficult, with sickness and some depression, bit it worked! My Timour Marker dropped from around 3000 to 88 on Folfirinox, though it is starting to creep back up (currently 325). I still feel good during weeks 2 and 3 of the cycle, with week 1 being a mix of good and not so good days. The bad days are generally days 5, 6 & 7 when I feel tired, shakey and a little depressed (no more sickness though). I currently feel pretty normal, have moved from a 2 week to 3 week cycle to give me more good free time and know chemo has been the right decision for me and my family on both occasions.

I hope this helps!

Steve

X

[MSH]

Hi Valerie, you must be pretty devastated to have this come back after doing so well after the Whipples. I think there is an argument for starting treatment based on raised markers, but the fact that it's been 3 years before anything has shown on the scan suggests to me that it might be rather indolent.

Regarding chemotherapy, the best regime is Folfirinox which the studies will show gives a median survival of 11.1 months. Some of us have had a good response and done somewhat better. Its been 2 years since I started with treatment and I'm well enough to go on a 5 week holiday in North America next month. I'm symptom free aside from a bit of neuropathy from the chemo, and would rate my quality of life as excellent. There is always hope.

My best wishes for a good response.

Mark

[Valerieno1]

Thank you so much for sharing your experience with me . I have up and down days today I feel there might be a chance that the fear of it spreading to my liver it still could turn out to be fat. Having said that I am a realist and I am starting to get pain in my back and tummy I am taking pain killers I will know next Tuesday when I will get the result of Mir scan. Thank you again. Kind regards Valerie xxx

[Guest]

Hi Valerie,

Sorry to read about your diagnosis, but pleased you found this forum. Everyone is so lovely here, I am sure you will get the help and support you need.

I think you and your husband need to have a long chat with your oncologist. Discuss things thoroughly and then decide.

Whatever you decide, will be the right decision.

My lovely Dad was diagnosed last February at stage 4. He was given a 'generous' 6 months. My Dad is still here. The first chemo he had was gemcitibine. He had good results throughout. The pancreas was stable and liver mets were shrinking. He then had a break, and the next scan wasn't so good. He is back on chemo, folfox, he doesn't feel he is doing too well on this one. He has a scan tomorrow, so we will see. But, he is still here, 8 months longer than they gave him.

As a daughter, I will respect and support any decision he makes. Though saying that, I am pleased he has given chemo a go. If it proves it isn't working, then at least he tried.

I would dome some research, ask some question and then decide. Please keep posting here, we all help each other.

Leila xx

[Valerieno1]

Thank you for your positive e mail. I am feeling a lot better than I was a few days ago I have just had my liver Mir this morning I will have results next Tuesday the 7th April a bit delayed due to Easter. We can do no more so we will try to enjoy easter and then see where we are but thank you Leiila I hope your dad continues to make progress. Xx.

[Valerieno1]

Hello thank you for your messages when I posted for the first time. I have now had my Mri scan and I have stage 4 pancreactic cancer which has spread to the liver I am to start chemo in two weeks on the drug gemcitabine and abraxane

I have not had chemo before as I had a whipple in 2009 which they thought was a cure. Is this mixture of drugs of drugs effective. I know there are a lot of negative stories of chemo for pancreactic cancer I am scared and I am trying to be positive for my husband and my family. I am pleased that this forum is so helpful when I feel alone. Love Valerie.

[Guest]

Hi Valerie,

Thank you for posting. As I said before, my Dad was diagnosed at stage 4 with spread to his liver. I was/am heartbroken and cannot possibly imagine what the patient feels. I don't have any experience of Abraxane, but a lot of people here do. My Dads first chemo was Gemcitibine. He got on very well with it an it reduced the liver tumours quite considerably. He is now on another chemo, which I don't believe has worked quite so well. I am hoping to get this changed next week.

Please keep posting Valerie, you need somewhere to come and share your feelings. Please don't keep them bottled up.

Leila xx

[MSH]

Gemcitabine/Abraxane is an effective treatment for pancreatic cancer. It may not be curative but the objective is to extend life and ease symptoms. It is not quite as effective as Folfirinox in trials but less toxic. Of course trials give an overall picture and individuals differ.

http://www.ncbi.nlm.nih.gov/pubmed/25638248

[Valerieno1]

Thank you for your posts I find them so helpfull This week continues to be a nightmare. Tues 7 diagnosed with stage 4 pancreatic cancer/liver cancer spread. Chemo team contacted me when given the referal pre blood tests concerned about blood sugars had to go to hospital yesterday told as half pancreas left from whipple is failing so I am now diabetic. Sugar level was 19.2. We have date now for chemo starting 24th April. I. Just hope I can fight as lots of you have for my loved ones. I am going to be on gemcitabine and abraxane. Thank you again for your posts. Love Valerie x

[J_T]

Hi Valerie, its a difficult time for you and your family, you are stepping into the unknown. Just know many have gone before you and have some good outcomes. Most people report the treatments getting easier after the first couple so keep that in mind.

Best wishes for your first time

Julia x

[Sueoliver]

Hi Valerie hopefully you will get some good results with the chemo. My Mum's blood sugar went up to 18 but they haven't classed her as diabetic! She can still eat what she wants, although that isn't much at the moment!

I hope it goes well on the 24th. Stay strong.

Love Sue x

[Bowie]

Valerie, hi I hope your treatment is going well and you are feeling OK. My husband was diagnosed with stage 4 on 27 March 2014, with spread to his lungs and an adrenal gland and told he had 12-26 weeks naximum, but probably nearer 12 weeks. Well he has been on Gemcitibine and Ambraxane and is still going, with shrinkage to the secondaries in his lungs, no trace on his adrenal gland and stable in his pancreas. The side affects have been fairly minimal, a fried brain feeling, his description meaning slightly irritated for a few days. I realise that this could all change, so we don't want to tempt fate, but his life for a 71 year old, is quite good. He cooks dinner each night, does the shopping, light gardening, pottering and manages a drink in our local before serving dinner, plus time with the children and grandchildren. He doesn't walk too much, as he's tired earlier, but make-ups for this by driving around a lot more. Anyway we sort of try and live day to day, but get scared every 8 weeks with the next scan. Anyway, what I'm trying to say is that everyone is unique and the experts' prognosis is based on empirical evidence which is changing all the time, with many people, with this evil disease unwell without the pancreatic cancer, so this does all affect the statistics negatively.

I hope the treatment works really well for you with minimal or no side affects. Fiona X