CHEMOTHERAPY

[gillvb1]

Hi,

My Dad has pancreatic cancer and we have been told that the Whipples operation removed the tumour but that Chemotherapy is needed to zap any rogue cancer cells. Can anyone give me their experiences of being treated with the drug Gemcitabine (Gemzar) please? Hope to hear from any of you soon, Kind Regards, Gill x

[Ellie]

Hi Gill

Sorry can't help with your query (my husband having different chemo), but just wanted to say hi and ask how your dad is doing.

Hope he's still making a good recovery.

Best wishes

Ellie

x

[megascops]

My Mum had this with cisplatin as well

They were very effective for a while.

It was on a 14 day cycle, she felt ill (lethargic) around day 5-6 of every cycle. So try to plan nice activities for him round the time of the cycle he is feeling most well (no point in bothering to try to do too much with him at the worse time of the cycle, better to organise nice things at the best time to give him quality things to look forward to. Take unpaid leave from work if necessary to do this, you won't regret it, I promise).

There are several side effects, probably different in every person, most likely nausea and diarrhea. They can be treated quite effectively. But they are quite predictable from one cycle to the next, e.g. if he feels bad on day 5 of the first cycle you can bet he will feel the same on the next.

They’ll probably give him anti-nausea tablets when he goes for the chemo.

The side -effects are not too bad but they are likely to get a bit worse over the period of treatment, not massively so but they do tend to get worse.

[lorraine]

Hello

My dad is in his last set of chemo (1 week to go) he had chemo today, but was also told that he needed to go in tomorrow for a blood transfusion (sorry not sure how to spell it). He's been very low his week,in bed most of the time .Is this anything to worry about? Dad has p/c which they are only now treating with chemo untill next week.He will then be rescanned,but he seems to have gone down alot in the last few weeks.

Lorraine

[chinup]

Hello Gill

Just want to say all the best, it's great news that your dad's operation went well - if he gets through as much chemo as possible he should have a really great chance, good luck.

Edited January 21, 2009 by chinup

[gillvb1]

Thank you to all who replied to my post. Chinup - you are not rambling - you have provided me with very useful information which I will refer to over the next 6 months of my Dad's Chemotherapy. My Dad had his Whipplies on 1 October 2008 and will start his first cylce of Chemotherapy on 5 December 2008. He will receive Chemotherapy on a weekly basis for 4 weeks, then every month for the following 5 months. Let's hope he responds well to treatment. He has recovered amazingly well from the Whipples with no side effects at all other than he is now taking Enzymes with food. My Dad is nearly 75 years old but is as fit as a fiddle and if anyone can make it he can - I've got everything crossed! Still feeling pretty negative though, I know that this will be an up hill struggle and I wouldn't wish this situation on anyone. Best foot forward and thank you for all your support which, believe me, is what keeps me going in the unknown future ahead of me. Love, Gill x

[chinup]

Gill, hope your dad is doing ok with the chemo. X

Edited January 21, 2009 by chinup

[kazzie]

hello,just thought I'd say that you must be happy that is really good news to hear ,as with this disease it is the best we can all hope for,enjoy your xmas and have a good time.xxx Karen

[chinup]

Karen, thank you for your good wishes, as you say it could have been a very different story. We are just making the very best of this break, my mum has just been round for sunday lunch and managed to polish off a plate full, it was such a boost for us all to see her tuck in as it has been an awful year and like all of you we have been beside ourselves with worry. Not sure what the future holds and there is a certain inevitability about this disease isn't there?

All the very best to you and your family xxx

[gillvb1]

Hi all, just a quick note to let you know how my Dad is doing. He has completed 3 weekly sessions of chemotherapy and has had no side effects at all. He is in the peak of health and continues to do really well. Dad visited the Consultant for a checkup yesterday and was told that he was one of those who had 'come through it'. I don't know whether to be rejoicing or not - as the last post stated, this condition seems to have an inevitable outcome. So far so good though. Happy New Year to you all. Love, Gill

[chinup]

Great news from you, keep us posted and all the very best to you and of course your courageous dad, XXX

Edited January 21, 2009 by chinup

[Joyce]

Hi gilvb1

I am new to this site and came across your note.

My husband is fighting pc and is using the drug you mentioned. He has done well on this, (he also as a ulcer and taking medication at the same time) feels tired on the day of the chemo and the day afterwards but otherwise goes out shopping, meals walks etc. His pc was inoperable also and we thought the worst. At his first scan after the first set of chemo it had stayed the same, no bigger, no smaller, and not ventured elsewhere. So on second course of chemo and will await to see what shows on next scan. He's had flakey skin on fingers and feet but moisteriser sorted that out. No hair loss, eating well a little tired. Obviously, this may change on his second set we will have to wait and see.

Hope this is of interest to you.

Take care Joyce

[kazzie]

Hello Joyce,I was reading your last post and my Dad has been attending our local hospice after every chemo to see the mcmillan nurse for alternative massage on his hands and feet ,as he is diabetic it has done wonders for him to aid his circulation and the condition of them.Has your husband enquired after this.I think it is quite a feelgood factor as well.

Karen

[Joyce]

Hi Karen

Tks for message

John is able to manage his skin problem with creams but will enquire re mcmillan. How old is your father and how is he doing. This is long road we travel especially at this time of year and it is sometimes difficult to cope with a husband with cancer. But he is focused and strong and togther we will tackle this. Hope the info re effects of drugs were of interest.

[kazzie]

Hello Joyce,I am so glad to hear how John is doing,when is his second scan ? My Dad will be 68 in a couple of weeks and only retired because if this 5 days before xmas,and this week he had his results from his scan and we had fairly good news as well as we could hope for with this disease.My Dad is very focused and very open to alternative medicene ,which is why he has been taking his honey.We went in shares with him on an allotment before he was diagnosed with this and that has kept him going to planning what he wants to grow so that has a very positive attitude,we are all here when you want to talk,take care Xxx Karen

[Ellie]

Hi everyone!

Great to read so many positive things on here lately. Gill, Karen & Chinup - all your latest reports were encouraging! Glad things going ok for you all.

My husband is doing well, too. Just about half way through his chemo now and still only getting nausea, some tingling in his fingers and other bits & pieces, which he can cope with. His biggest problem has been going to have blood taken each week,to be tested for the warfarin he needs to take, as well as for his chemo. He has had so many blood tests done over the last 5 months that his veins are now very weak. The nurses take about 3 attempts to get the blood and he is in some pain with it. So, it's been decided he would be better to have a Hickman line put in his chest so they can administer the chemo through that. He should have had it done yesterday. We turned up at the hospital at 7.30am, but there was a mix-up and after he'd got undressed, taken a cocktail of tablets, had blood tests etc, they realised his blood was too thin to operate and he had to come home. He's booked in again next week, once he's stayed off the warfarin for a while.

Just wondered if anyone else had had a Hickman (or central) line put in for chemo? I believe you can get infections in it, but the hospital think that if it's flushed out every week before his chemo, that it should be ok. I hope hubby is doing the right thing, having it done. I know he hates having blood tests now, so it does make sense for that reason. Just don't know how he will feel about having the tubes hanging out on his chest....

Best wishes to everyone

Love

Ellie

xx

[Ellie]

Hi All

Just an update on the Hickman line. Hubby was in hospital for the day, but all went well. I must admit I felt squeamish when I saw what he had. Seeing the after effects of the whipple didn't bother me, but I would hate to have this done. It must be worse for a woman, I think.

I think it probably looks worse than it really is though! He isn't too bothered by it and it made it easier to have his chemo this week, so that will be worth it. We joke about him taking his shirt off on a beach - it would scare everyone, I think! That's when I realise just how much he's gone through - whipple, bowel op, so 3 big scars from that and now this line in his chest. Poor man. I didn't realise that chemo damages your veins so much. Maybe because he's had so many blood tests from his many trips to hospital, plus the chemo, that they're getting messed up.

We still have so much to be grateful for though. Having a few days away with our daughter in Cornwall at the end of next week, so that will be a boost for us both. Just have to avoid those beaches! )

Thinking of everyone and hoping you are all coping. Please keep in touch and update everyone on progress. I think we all get some strength and companionship from everyone's reports.

Love

Ellie

xx

[gillvb1]

Hi all,

I have been away from this site for a while and thought I'd post an update on my Dad's progress. You may recall that my Dad had the whipples op in November 2008 and the tumour was successfully removed (or so we hope). My Dad has just had his 75th birthday and is doing exceptionally well. His appetite is good although he is taking enzymes with each meal. His Chemotherapy started in December 2008 and will continue until June 2009. My Dad has no symptons to report. He is not losing his hair nor is he nauseous. I have noticed that he tends to be a little absent minded, losing his train of thought etc, but hey, who wouldn't be like that after what he's going through. All in all, so far so good. Ellie, Joyce, Chinup, it's good to keep up to date with your experiences. Take care, Gill

[kay1961]

Sory I haven't been writing lately, but I have been looking at the site, and find it very comforting to hear from people in the same boat! My husband John has recovered enough from his operation (whipples that they couldn't complete due to finding growths on his liver & lypth nodes during the op) and he had his first course of chemo last Tuesday (Cisplatin given by infusion) and then Etoposide given in tablet form for the next two days at home.

He has been very poorly since Wednesday morning, had great difficulty keeping the chemo drugs down, had to take 3 in the morning and 4 in the evening for 2 days. He was given anti sickness drugs to help with the nausea. They did not work very well, and he has been sick, or felt sick all the time since Wed am. He has also had diaohrea (sorry about spelling) since Friday. He had not eaten anything since Wednesday, and was only drinking sips of water, because he was so sick. He also had severe restlessness, and found this very upsetting. This stopped on Saturday thank goodness.

He has had some still lucozade today, and tonight asked for a small ham sandwich. Which he has been able to keep down so far.

So maybe he will start to feel a bit better from now on, Until the next time which is on 22/4/09.

Has anyone else had these side effects, and does anyone know if they will be the same next time he has chemo! Any help or advice would be most welcome, I feel so useless, that I can't help him with this situation, other than just being here!

Hello to everyone, and hope your loved ones are coping ok with this awful disease.

Love

Kay xx

[Ellie]

Hi everyone

Just had the worst birthday ever. My husband was called into see the specialist today, to be told that cancer has now been found in his liver. We were both devasted. He had ONE more chemo session to go (tomorrow) and we hoped that would be it, but now that's been cancelled and they are talking about starting him on Gemcitabine in about 3 weeks time.

The oncologist seemed to be saying that it is worth trying the new chemo, but if it doesn't have any effect, then that's it. I can't believe it. To get this far and think he'd got a good chance and now this. Part of me wants to collapse in a heap but the other part is having to stay strong, keep hopeful and positive and pray that because the cancer is only small, the chemo will work.

I'm going to read up as much as I can on other people's experiences and treatment, to see what CAN be done. He seems pretty well in himself, apart from headaches & backache, which may be the chemo he's been on so far. We need to see if those symptoms disappear once it's out of his system. Otherwise, they could be related to something else which is going on.

The fight has just got that much harder.....

Ellie

x

[chinup]

Dear Ellie

So sorry to hear that you have been given that news on your birthday, I can imagine you don't know which way to turn at the moment.

Please wait and see what they suggest next and consider carefully the options you are given. But please, if I can give you one piece of advice, don't let the cancer be the only thing going on in your lives. I know that sounds like a pretty harsh thing to say but as long as your husband feels reasonably fit and well apart from pain (which can and should be controlled) then remember that he may have cancer, but it doesn't have him. Get out together and do some nice things - it is a good idea to take a break from thinking about it, even if it is only for a few hours. It's amazing what a break can do. It's very encouraging that your husband still feels himself and I am sure that the medics will take all that into consideration, even though you may not realise it. There are lots of treatments for secondaries in the liver.

Go and try to make the best of the rest of your birthday and face whatever comes next when you know what the options are, keep brave and strong and together!

all the very best to you both, xxx

[Nardobd]

Oh Ellie, so very sorry to hear your news. Ted, my husband, is on gemcitabine and he's doing very well on it, very few side effects other than a slight stomach problem, which was sorted out by giving him a gastro-resistant drug, which I hope will at least give you a little optimism. Ted's CA19-9 (tumour markers) have come down from 879 to 86 over 2 months treatment - I know it's only an indication, but at least it's a positive one! I hope your husband will get an equally good result from the gemcitabine.

Good advice from Chinup too: Ted had been feeling very vulnerable but agreed to go into our local town this week and we just had a few hours looking in the shops etc - it did him the world of good. So, whatever you enjoy doing together, spend some time doing it.

There are always options, although you might have to press the doctors to find out about them. Once you've recovered from the shock, see whether you can meet with the nurse-specialist or liaison to go through the detail. Your local McMillan Centre will also have information which you might find useful.

Our thoughts and prayers are with you.

Nicki

[Ellie]

Thanks, Chinup & Nikki.

Your replies have helped me a little. I was very down yesterday, but today I think we are both coping a lot better. I am NOT giving in to this thing, but I really did think, from what all the docs had said, that he was going to be one of the lucky ones. His tumour was supposed to be one that could be dealt with more successfully. It was caught early. He was doing SO well! One last chemo to go!

I have read of people in the USA being treated by a combination of 3 chemo drugs together (haven't got the names in front of me now) and that seems to be successful in getting rid of liver tumours, but our oncologist has only suggested the one. She seemed to be saying that even if he has the new chemo, that it will only perhaps give him a few more months than if he didn't have it! I don't understand it. He's not ill and weak and has put well over 2 stone back on since he lost it after his whipple! Are the docs just giving me the worst case situation? I want to think that this new chemo will help in a big way. Maybe I'm just being over-optimistic.

Anyway, we are carrying on as normal now - one day at a time again. We are going away in our caravan for Easter, with our best friends, so there may be a few tears, but there sure will be a lot of fun and laughs too. I'm convincing myself that mind over matter DOES work!

I will come back after our break and read up on everything, think about what I want to ask the docs, see what they can offer us. In the meantime, thanks again for your support. It's what I need right now.

Hope everyone has as good an Easter as possible.

Love

Ellie

xx

[Ellie]

Hi again

The chemo combination I've read about people having in the USA is Taxotere, Xeloda & Gemzar. It seems to have worked really well for some people over there.

Has anyone here been given this treatment, or heard of it being used?

Ellie

x

[Nardobd]

Hi Ellie

Gemzar is another name for Gemcitabine, so that is one of the tripple combo. I asked Ted's consultant about adding in other drugs and he felt that the advantages were statistically insignificant and that the toxic combination would be too much for Ted to cope with. However, everyone's different and each consultant has their own opinion, so I think it's worth asking about this combo when you next see the nurse specialist or consultant.

Some doctors do give the 'worst case scenario' - when we were first told Ted was only given months to live but the consultant has revised that to 'at least 18 months to 2 years', even if the chemo didn't have any effect. I think it's something that you probably need to clarify. It's so hard to talk about it, particularly with your husband sitting beside you, isn't it? I sat down with Ted before our last appointment and told him that I was going to ask some very difficult questions but that I didn't believe he couldn't get better - I just had to know the answers so I couldn't walk on eggshells. He completely understood and I was able to pin down the consultant.

There's no such thing as being "too optimistic"! Everyone I've spoken to says that a positive mental attitude is essential if you intend to beat this horrid disease. I hope you have great fun over the Easter weekend and that the break gives you some time to get things clear in your mind.