Husband newly diagnosed

[Chrisf]

Hello,

A month ago today my husband was diagnosed with pancreatic cancer that has spread to his liver. He was told he had months rather than years. He is 54 and I am 51 - we thought we had another 20 or 30 years.

We have five children, one just finished uni, 2 at uni and twins about to start in September so we were about to find ourselves on our own. We are all absolutely devastated.

We live in Manchester so close to Christie hospital, where he has been told he will have Abraxane and Gemcitabine and has been accepted on a clinical trial, which may involve giving Abraxane 24 hours before the Gemcitabine.

But we have already had setbacks - first a blood clot in his leg, so he's on daily Fragmin injections, then on Thursday morning we had to go to A&E as he has an infection. He's currently waiting for a scan (delayed from yesterday as they were too busy) so may not be home today.

I have seen how much support everyone on here gives each other - I feel so lost and he has gone from an active healthy man to an invalid in the space of a few weeks.

Christine

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[jay]

Sending you a massive hug Christine so sorry you have had to join the forum but everyone is so supportive. Hope your husband gets home today .

love Jayne

xx

[Guest]

Hi Christine.

So sorry to read yet another person posting on here, but at the same time, I am pleased you have found us.

Firstly I would like to say, to try not to think about the time limit that has been put on you. I know it is hard, I really know that. My dad was diagnosed in February, with stage 4 that has spread to his Liver. The oncologist told me he has 6 months. I seemed to be on a count down then. My dad is having gemcitibine and a Maestro trial drug and every scan has shown shrinkage on his liver and the pancreas is stable. My dad also feels well, with the cancer. It is other issues that are making him unwell. So please don't take much thought to the time put on you.

Please don't wait too long for scans and appointmennts. Please chase them up as much as you can do.

Please keep posting Christine.

Leila xx

[sandraW]

Hi Christine, welcome to the forum, the place where no one wants to be, but as Jayne and Leila say, the place where you will get lots of support and advice.

The Nurses are great, they are available weekday by phone and email and will also post on here, their advice is invaluable.

It is, absolutely devastating, when you are first diagnosed, but the treatments now are a lot better than they were, and people are seeing some good results. Once your husband can start treatment, you will feel you are fighting back, the waiting is awful but things will get going soon I am sure.

Your husband is young, mine is 68 now and its a year since diagnosis, he was lucky to have surgery, 4 months later it was back in his liver, but at the present time he is feeling and looking really well.

Remember keep posting, whilst we cannot always give advice, we are very good at listening, and supporting, take care sandrax

[J_T]

hi Christine and welcome to the forum.

So sad to hear of another young man with this cancer. You are lucky to be in Manchester where they have specialist pancreatic centres. Me and my husband were originally from M/cr but moved to the Lake District in 2005. When he was diagnosed in Mar 2013 I kind of wished we were still there because there is no specialist centre here and to be honest, while our oncologist looked after us well we found ourselves giving him info from this forum that he didn't know about.

The diagnosis really rocks you but as Sandra says once you start getting treatment, you feel like you are doing something and it really does give you a boost.

Just another note, it is very common for pc patients to get blood clots - legs, arms, lungs, anywhere.

Good luck to you both.

Julia

[Chrisf]

Thank you so much all of you. I'm glad to say he has just been discharged (at 9pm!) as the scan was delayed until late afternoon. But thankfully the stent he had put in 3 weeks ago is not blocked as we had feared and is draining properly.

The main problem now is that after 3 days of immobility his leg is very swollen and painful - I wish they would encourage mobility in hospitals as I think this could have been avoided.

Thank you Leila for the advice on time - I have been panicking that every day that he is in hospital is a day less with us. I will try and relax a bit more particularly after all your positive stories.

I was about to post the above when we had a phone call from the hospital - they have found a clot on his lungs and I've had to take him back in. So worried for him.

[Slewis7313]

Hi Christine and welcome to the forum. I was 58 when diagnosed in December 2012, remain inoperable, but still doing well. You have already been given some good pointers from other members, but on the clotting issue, I too had a clot on my lung which was picked up in a CT scan before it had chance to give me any serious symptoms. I have been on daily Clexane (similar to Fragmin) jabs since then (March 2013) and have had no recurrence. They check my platelets as part of the regular blood tests to keep an eye on this.

To reiterate what my friends here have stated, please keep pressure on the Doctors regarding any tests / scans and bear in mind that predicted timelines have proven to vary in so many cases. Focus in on the your treatment, which in your case is a new combination of drugs in the UK and has a good balance of efficacy and side effects.

I wish you both the best on your unwanted and somewhat daunting journey.

Please stay in touch.

Steve

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[Chrisf]

Steve, Thank you so much - I have sent your message to Pete this morning as it seems so hopeful. I was terrified all night that I was going to get a call from the hospital and was on the point of ringing the ward several times. Pete has already texted me though to set my mind at rest. I am annoyed that this has happened - I feel that more could have been done to prevent it building again.

It will delay treatment of course, but hopefully not by too long. And I was worried that this problem with clots would mean he couldn't have treatment but you have reassured me on that.

I hope that you continue to do well - I have read some of your posts elsewhere and it does give us some hope.

Christine

x

[wackywacky]

Hi Christine welcome to the place we don't want to be, we have a lot in common though same ages 51 and 54 not as many children as you, more set backs than I can count (read my post another ones got it) not had blood clots yet! and we are on Abraxane and Gemcitabine but we have it all on one day only started it last Tuesday due to all set backs. First diagnosed every thing went to plan got dates to start chemo but got jaundice then every thing went down hill but 13 weeks from being diagnosed we started chemo. My experience when they feel good you do when they feel crap you feel crap and think your worlds coming to an end but with grit and determination we will fight the little B the best we can. Every one on this forum are exceptional people and give goods advise and support x

[Chrisf]

Thank you wacky - it's horrendous isn't it? Just heard that he can come home though and that bringing him back in last night was probably an overreaction. I'm actually more concerned that they tried to give him a double dose of Clexane because they'd forgotten to record the first one.

Steve, I've tried to reply to your thread Clexane - possible alternative? but it seems to be locked and I can't message you either. I wondered if you ever got anywhere with the tablet form of heparin?

Thanks to all of you - I feel much better today.

Christine

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[Slewis7313]

Hi again Christine. I was indeed very interested in the new tablet form of heparin (or equivalent) and my Oncologist did some investigation. However, Heparin is recognised as being a well established treatment particularly for cancer sufferers and there is a reluctance to move away from it. I was all set to push harder on this one when someone else here developed serious clotting problems after coming off Clexane. It may have beem coincidence, but it certainly made me sit up and have a hard think about it and I decided to continue with Clexane for the time being at least. That said, the nurse administering my chemo last week asked if I was aware of a new tablet form of anti-clotting treatment, so perhaps they are slowly considering adopting this one?! I have an apointment with my Oncologist this Thursday, so will ask if there was any more feedback from her colleagues on this one.

Steve

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[Cathy]

Hi Christine

I'm sorry to hear of your diagnosis but you can see from the replies that you are not alone. My partner's cancer had also sperad to his liver. I know how you must be feeling - this will be a bit of a steep learning curve but use this forum and the nurses here, both will help in bucket loads.

My partner also had a blood clot (in his arm originally) which cleared up pretty quickly after clexane injections were started. Clotting is a common side effect of certain types of cancer (and also the treatment) so it is good injections have started so hopefully this won't be an issue in future.

All the very best

Cathy xxx

[Chrisf]

Thank you Cathy - you are right that the support here is amazing. And I hope that you are doing OK too.

Steve, did you find anything out about the oral anticoagulant?

I haven't been able to post for a few days as it's been the worst week of our lives. Pete came out on Sunday but on Tuesday suddenly started with chest pains. The hotline number told me to ring 999 and they were there within minutes. We spent all day in A&E while they tried to work out what was happening, as he was feeling generally OK, although SATs were low and heart rate was raised. In the end he was moved to a chest ward, we came home for a couple of hours while he went for a CT scan, and then went back for evening visiting.

However, as soon as we got there, the professor who was at the hospital that day came to talk to us and I could tell it was really serious. I asked to speak to her alone and she said that the scan had shown that he now had massive clots on the lungs and that they were travelling from a new clot in his thigh and they didn't think they could stop it. She said that the only hope was to put in a filter into the vein going to the lungs but it was a very unusual procedure, and not everyone can have it. She said that there was a very real risk that he would not survive the night. It was horrendous. I had 3 of our children with me, and they each went to see him for a few minutes while I rang the other two. One got on a train straightaway (although it's a four hour journey) while the other is in Cornwall and couldn't get back that night.

But then the professor had a call from an 'interventional radiologist' (I think) who said he would assemble a team and come in to do the filter procedure. He went down at 8.30pm and we wandered the corridors for a while then went back to the ward and waited. And 45 minutes later, there he was being wheeled down the corridor, sat up and smiling! It felt like the best moment of our lives.

Since then he has continued to recover quickly and is coming home tomorrow, no longer on oxygen, although obviously weakened. And he will be seeing the oncologist on Tuesday to plan the cancer treatment again.

I would like to publicly thank the two nurses on here, Jeni and Dianne. I have been sending ever more panic-stricken emails to them over the last few days and had the most amazing support from them. But not just support - also very valuable information that I desperately needed as we went a couple of days without seeing a doctor. Thank you both - you have helped me to get through the week.

So I'm about to go and visit him armed with a cool bag of goodies and some sparkling elderflower presse as it's our wedding anniversary today. I hope now we have turned a corner and things will start to improve.

Christine

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[Cathy]

Have a wonderful aniversary Christine. What wonderful news!!

I am so pleased to hear your husband is feeling better. Now he is on the injections hopefully they will kick in and this won't be an issue again.

My partner was on clexane for a few months but came off it after some very good CT scan results. Three months later he developed clots in his arteries in his leg. I remember at the time talking to the oncologist about coming off the clexane and whether we should have stayed on. The reply was that it was a measured risk. Jonathan was delighted to stop the injections but I sometimes wonder, with hindsight, if we should have stayed on.

Enjoy your special evening!!

And, yes, Jeni and Dianne are super!

Cathy xxx

[sandraW]

Happy Anniversary to you both, glad you had such wonderful support from Jenni and Dianne its nice to know they are here for us all.and great news that your hubby is feeling so much better now. Lets hope he recovers well and can start his teatment, take care sandrax

[wackywacky]

You are correct Christine it is horrendous, but there is no over reaction with this thing, do what you think is best you know your other half better than anyone else and if something is wrong you know. Anyway crap bit over with Happy Anniversary to you both and glad hes feeling better x

[Slewis7313]

First and foremost, happy anniversary for yesterday. I did ask my Oncologist again about the tablet form ant-coagulant and the response has not really changed. With Pancreatic Cancer, Clexane has a really good track record and they remain very reluctant to move away from it. I find it difficult to argue against their logic after 16 months on it with no reoccurrence.

Great to hear they have managed to resolve the problem with the filter, though I must admit I have never heard of this procedure (no doubt Jeni and Di have).

Hope you are able to enjoy the weekend!

Steve

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[Chrisf]

Thank you everyone for your anniversary wishes. I did take in some treats last night ... but he was fast asleep!! When he woke he wasn't hungry or thirsty either but we sat out in the sun for an hour and celebrated anyway.

Cathy, he had been on the injections for a couple of weeks already and the clots still seemed to keep on coming. He's now on a higher dose, twice a day for a while until we see the haemotologist. But he came home this morning and is OK, although very tired. I read about you and Jonathan too - I'm so very sorry. How are you doing 6 months on?

Steve, thank you for the information on the oral anticoagulant. I will ask our haemotologist too when we see him, but I wouldn't want Pete to be a guinea pig with this either given the problems he's had. And the filter is not a common procedure at the hospital he was at but the radiologist who did it (who covers several hospitals) seemed to have done it many times before. Dianne has come across it too.

Also, does anyone have any tips for giving these injections other than keeping at 90 degrees and making sure you hold a roll of fat (there's not much left though)? His stomach is sore where the injections have been and is causing more pain than anything at the moment. And of course it's worse with 2 a day.

Thank you again,

Christine

x

[Slewis7313]

As far as the jabs go, all I can really say is the softer the flab feels, the easier they tend to be. If you can see veins, then obviously try to avoid as they hurt (you know when you hit one as the spot bleeds afterwards). I was for a while injecting in my thighs (standard procedure in German Hospitals) as my tummy was sore, but you need to take advice on where to do this.

Not much help I'm afraid, especially when losing weight/fat.

Good luck!

Steve

X

[J_T]

Belated anniversary wishes from me to you both! So glad to hear the procedure went well and Pete is feeling a little better, if tired. Glad you both got to sit in the lovely sunshine and hope you soon get some treatment sorted.

You are right about Jeni and Dianne too, what would we do without them?

Best wishes

Julia

[Cathy]

Hi Christine,

Glad you managed to have a little celebration. And thank you for asking after me. I'm not too bad thank you. I've been busy, friends have been great and I've also started to get involved in the charity and doing stuff for them. Mainly I've been focussed on a benefit we are putting on for PCUK in September locally.. Lots of Jonathan's friends will be performing.

Re the jabs, that sounds a bit like Jonathan as the clots reappeared but stick with it as the injections should help in time.

I think anywhere fleshy, so the thighs too as Steve suggests. Try to use a different site each time as the skin can bruise, I used to go from 1 side of Jonathan's tummy to the other (I did them for him). I got him to sit down if I could as there is more flesh then (tho he himself preferred to stand). They will become routine in no time.

All the very best

Cathy xxx

[sandraW]

Hi Christine, Trevor hates his injection, he is on fragmin, but we make quite a joke of it, Trevor tells everyone that he started to worry when I wrote 180 on his tummy and went to the other end of the lounge, to take a good run up...... but it does do its job, Trevor only had a small clot in his arm under his PICC line and although it took a while it slowly but surely dispersed. he did try to do them himself, as he went away for a few days without me,

but it took him half an hour to build up the courage to do it. Then whilst he was on the ferry he asked the nurse to do it for him, then came home and said I was doing it all wrong,he said the nurse shot some of the liquid out to remove the bubble, and said he didn't need to pinch his tummy !!! so when I then showed him the instructions he realised, yet again, I WAS RIGHT, quite a common occurrence in our house lol.

It must be hard on your hubby having to have them twice a day, the only other thing I can suggest is a nurses uniform and stockings and suspenders that might take his mind off the injection, take care sandrax

[sandraW]

Hi Cathy, WAVES, glad you are doing ok, well as ok as you can be, lovely that you are so involved helping the charity and thanks for all the support you still give on here, we all really appreciate it, take care sandrax

[PCUK Nurse Jeni]

Many thanks Christine for your kind comments, and Happy Anniversary!

Jeni and Dianne.

[Chrisf]

I haven't been able to post here for a while. Pete died two weeks ago. I have posted here http://forum.pancreaticcancer.org.uk/viewtopic.php?f=26&t=1496