recently diagnosed and looking for advice please

[SteveBee]

Hello my name is Steve and my wife is 52 years old and in otherwise good health and has been diagnosed with advanced pancreatic cancer- adenocarcinoma which is in the tail and inoperable. This was on the 9th of Feb, we had a biopsy under CT scan and have already started chemotherapy with what i understand is the standard first line drug Gemcitibine. We are two weeks into a 7 week course and have a review meeting with our consultant in a week before potentially embarking on the last 4 weeks of the 7 weeks. I wondered if anybody could tell me if they have experiences of Gem not working and if so what other chemo/therapies were offered. When we first met our consultant we were in shock as we thought we were being assessed for gall bladder/ulcers!

Can anyone please tell me where we might go from here medically in the time we have left as we have a young child and every day is precious.

[clair2305]

Steve

I don't want to bombard you with stuff, but do read my posts. My husband was diagnosed in July 2009 with PC that had spread to the liver. He is 42. He was on the Telovac trial, which is looking at developing a vaccine to control PC. There are three strands to the trial i) just Gemcitabine and Capecitabine, ii) GemCap followed by the vaccine and iii) GemCap and the vaccine at the same time. The selection for what strand is made by a computer and my hubby got strand 1, the standard chemo.

He is no longer on the trial, as his PC showed progression which wasn't really, it was because of his first CT scan being done a month before treatment starting.

He is continuing to have GemCap off trial and has just finished cycle 7, (3 weeks on, 1 week off). The CT in December showed shrinkage and the one at the beginning of this month showed it was stable.

there is lots of information out there, and my advice to you, which was what the nurses at the hospital told me is keep a diary and a notebook, as you can write questions down as you think of them.

For my husband at the moment, GemCap is working, the last 3 cycles he has missed week 3 because of low platelets and neuts (you will get to grips with platelets etc in time). I think he may be due a break (and a holiday).

I feel for you with a small child as well. My stepson is 18 and lives with us. As my husband and I have only been married two years, we do not have children and now that will probably never be a possibility.

If you need anymore info, please ask. I or others will respond to you. they are a good bunch on here and have been a great source of support to me over that last 6+ months.

Clair

[Ellie]

Hi Steve

So sorry to hear about your wife. Many of us on will know how you are feeling, having to learn about your wife's illness and see her go through the system, finding out what will help her etc. Everyone seems to have a different treatment, a different reaction and different sorts of problems, so it is not easy to generalise, but we all know how hard it is to cope with the effects of it all.

I wish both of you lots of luck and strength to cope with what lies ahead. One thing that has kept me going since my husband was diagnosed is to take one day at a time and try to stay positive. If the going gets tough, then we are here for you. We share the good and bad times on here and it does help to know that other people are going through the same thing as you. If you're feeling down, then someone will write and offer you advice or support.

Best wishes

Ellie

[Nardobd]

Hi Steve and I'm sorry to hear your news. Like you, we thought my husband had gallstones only to be told three days later "it's a matter of months, not years". It turns your whole world upside down and I feel for you.

Ted, my husband, has had gemcitabine monotherapy (ie without any other drugs) and responded very well to it. He finished chemo just over six months ago now and (as far as we know) is still stable.

Contrary to Penny's experience, we've been told that there are second and even third-line therapies available when it "all starts to become active again", which is our consultant's very tactful phrasing. One of these is capecitabine and there are other chemotherapies which may be offered.

Do enquire whether your wife will be offered chemoradiotherapy after her chemo. This is a much weaker dose of chemo combined with daily radiotherapy in short sessions. Most patients take up this treatment, although Ted chose not to. His consultant advised it offers, on average, about an extra three months statistically and Ted felt that the additional time spent at the hospital and possible side-effects outweighed this for him personally. Of course, everyone has to make their own decision.

Why do you ask for experiences of the Gemcitabine not working? I know it's a scary thought, but it's relatively unusual. Your wife won't feel any different whether it's working or not and, in fact, due to the side effects might even feel worse whilst on chemo, I know that Ted did, especially toward the end of his six month course. Seven weeks seems very short indeed for a course of chemo and you might want to ask the consultant why only such a short course is being advised.

What happens next medically is as individual as the patient. Some people go on for a couple of years or longer, some seem to fade away fairly quickly. I've been told that a positive attitude and never admitting defeat assist in longer survival but whether that's just "people being nice" or wishful thinking I don't know. Ted is certainly still very active, although he gets tired quicker than he used to, and to look at him you really wouldn't think he was so ill.

There are a number of interesting trials going on, including PhotoDynamic Therapy and Abraxane, as well as some interesting information coming out about natural therapies which might help in conjunction with traditional therapies. If your wife would like to take part in one or more of these trials the first thing is to ask the consultant whether he would support this (there's no point in doing the research and getting your hopes up if the consultant would block any referral). If s/he says they would then you can look at what trials are available and ask for a referral to those which you think might be appropriate.

Do let us know how you get on at your appointment and ask as many questions as you need - there's usually someone on the board who has been in a similar position and can help.

Take care

Nicki x

[SteveBee]

Thank you so much for all your replies. You've given me lots of very valuable information and it's also comforting to know that there are other people out there who can understand some of the feelings and fears we're going through right now. At the moment, we don't believe Helen's cancer has spread beyond the pancreas and she is otherwise in a reasonable state of health. I guess the reason why I wanted to know what might happen if Gemcitibine didn't work was because I didn't feel I knew all the options that might be open to us when we first saw Helen's consultant, so I just wanted to try to get as much info about the various options as I could. It's all still so new to us and there's a lot of get our heads around. But then you all know full well what that is like.

I'm sure I'll find myself back on the forum again soon. We're seeing the consultant next week, so it will probably be after that. In the meantime, thanks again to everyone who has responded. I really appreciate you all taking the time and trouble.

Steve

[scp38]

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Edited August 9, 2010 by scp38

[clair2305]

Susan

I think the first few weeks from having the CT scan that gives you the dreaded news and seeing an oncologist to starting treatment is horrible, as I know it was for us. I won't bombard you with info but will say what I said to Steve, get yourself a notebook and diary, write down any questions you have for your appointment at XX . I know from our experiences at xx the oncologists do answer your questions, they give you more information and we also have a named nurse as well as a Mac Nurse.

Take care.

[scp38]

Th

Edited August 9, 2010 by scp38

[Ellie]

Dear Susan

I am so very sorry to read your post. Everyone on here will understand how you are feeling - shock, horror, upset, terror. You feel your world has been turned upside down. And yes, the very worst part of all is the waiting. Waiting to see someone, waiting for tests, waiting for results. I found that once we had the info, it was easier to come to terms with it, deal with it and get organised.

There is so much information available to help you online - use this site, particularly for the emotional support you'll need - but have a look at the Cancer Research and Macmillan sites. They have so much info and in easy to read and understand sections. Yes, it will be upsetting to read it at first, so do it in small sessions. Then try to take one day at a time!! You have to stay positive and be prepared to fight this awful thing. Everyone reacts differently to the treatments and even the doctors can't be 100% sure what will happen to you. You only have to read posts on this site to see that many people have done better than the doctors expected.

There are so many people on here that will listen to your worries, answer your questions and be here if you need someone. None of us want to be here, but I think it's a very close-knit and personal site and you feel people genuinely care.

I wish you all the very best of luck in getting yourself sorted out.

Best wishes

Ellie

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[Nardobd]

Hi Susan

You've already been given some great advice by Clair and Ellie, which I can't better but I just wanted to add another voice to say that we'll always try to help if we can. The users of this discussion board are genuinely caring people who completely understand the shock you're experiencing right now. So, whether you need practical advice, moral support or just a shoulder to cry on, don't be embarassed to ask.

Take care

Nicki

[scp38]

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[scp38]

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[Nardobd]

Hi Susan

Yes, do ask the oncologists about Omega 3. There was a report somewhere that it was helpful but I can't find it easily. I've put Ted on it anyway - after all, he's currently on a break from chemo and if it might help we can't afford to ignore it.

You certainly do not have to do this alone. There is lots of support available to you. One person I suggest you make good use of is the nurse specialist that's allocated to you. We've found ours very helpful indeed and she always has time to listen to worries and give simple advice. Additionally, if you do need a rapid appointment s/he knows the system and will ensure that you get seen asap.

Apart from the clinical team, there are lots of support avenues, one of which is this discussion board. We're all in the same boat, either having pc ourselves or being the relative or close friend of someone who has or had pc. There are people at all different stages of the disease which is great because there's always someone who understands what you're going through. We might not be able to help physically but the emotional and moral support given and received is wonderful.

If your daughter is inclined, why don't you suggest that she joins our little 'family'? She can post her worries and concerns too and maybe it will help her. Don't forget this discussion board and PCUK as a whole is for those AFFECTED by pancreatic cancer which includes those who are or were watching their loved ones as they fight this horrible disease, so sshe would be very welcome.

If there's anything we can do please just shout.

Kind regards

Nicki

[scp38]

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[scp38]

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[smilodon]

Hi Susan

Firstly I am so sorry that you are in this situation. I can so relate to your emotions . I was diagnosed with PC via a ct scan on the 8th Feb . This was supposed to be operable, and was due to have a Whipple procedure, only to be woken by the surgeon and told that they hadn't picked up the spots on my liver until that moment when they had done the laparoscopy , so all they could do was give me a double by-pass op.( Now in my 2nd week of gemcitabine). Anyway back to the emotional rollercoaster. My op was on the 8th March. It took me until 3rd of May to really surface again and look forward with some hope. My family and friends were the biggest help, followed by MOST of the hospice people ( some shouldn't do that job, they really shouldn't) and the great oncologist at the xx. Surgeons I found as a rule to be quite adept at driving out all hope, as they are not quite at ease dealing with people who are conscious; my last appointment with them ended with the words- ' go and enjoy yourself, because the clock is ticking'. I ask you, what a thing to say.

Back to the 3rd May- simply put I found hope in a book by Matthew Manning ( Google him) and also spent a day at the Harry Edwards Centre in Shere; I have taken control of my diet, my pastimes and putting my all into my family. It makes a difference. PLUS I know it's difficult, but do all the bad things NOW- like wills, funeral ideas, ie get your house in order and you can get on with living your life without those nagging things in the background. It's not being defeatist, it's being practical.

I wish you all the very best. And remind you that statistics are made to be proved wrong ! Let's hope we all do that, so we can tell 'em where to shove 'em !

Regards

No not regards

Forgive me...

Much love

Martin

[Juliana]

Hi Steve,

From what my oncologist has told me Gemcitabine is currently the best form of chemo for treating pancreatic cancer, usually it has mild side-effects (no total hair loss and constant vomiting etc), but everyone is different so you just have to take it day by day.

My experience with Gemcitabine and Capecitabine has been questionable, my team can't say whether it has done any good or not, I tolerated it fairly well first time around (experienced some scattered hair loss, about a 3rd of it came out - so no need for wigs etc, and some rare stomach spasms, mild nausea), second time around I was just on Gemcitabine and found it emotionally hard to go through with as in my mind I was filling myself with toxins that may not even work.

I am now considering Capecitabine as my little veins just can't put up with the canulas and I found going to the CDU (chemo day unit) to emotionally draining, and the smell (just a clinical clean type of smell) turned me to the point of vomitting. So - capecitabine tablets in the comfort of my own home sounds more appealing.

There is something you may be interested in, a chemo sensitivity test. Basically your cancer cells are tested against various types of chemo treatment to see which it responds best to. This is done in vito (outside of the body in a test dish/tube) and has a 70% accuracy for working in vivo (within your body). It is quite popular in the German Cancer clinics, but some private practitioners in the UK do offer this service, for a fee. I am going to visit this Dr. next week - so will ask about the cost:

http://www.drhembry.com/specialised_diagnostics.html

Best of luck, and let us know how you and your wife are doing.

Juliana

Hi Susan,

I have to say what an amazing result you have had with your chemo combination, 90% is fantastic - I know you were hoping for more, but to know that all the horrible side-effects you are putting yourself through mean something. Hold onto that, to see progress gives you the focus to go through with it - makes all the suffering worth while. Trust me, it's much harder to do when you do not see results, or if your results are worse.

Omega 3 is definately useful, it has been posted on here a while ago. The other one that my oncologist actually recommended me to take was Turmeric, he advised there had been trials with positive results, the only problem being is that the pharmaceutical companies won't invest in it as they cannot patent it - so can't make money from it.

With regards your hands and feet, have you tried Aloe Vera gel? Get the proper 100% products from the health shops, they are not that expensive for the quality and quantity you get. You could also combine it with some lavender oil as that has great healing properties along with aiding sleep and relaxation.

Take care,

Juliana

[scp38]

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Edited August 9, 2010 by scp38

[Ellie]

Hi Susan

Good for you, being so strong and positive! You sound ready for a fight now, so wishing you all the best for your treatment. I'm sure we all hope it will have good results.

Best wishes

Ellie

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[scp38]

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