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Wish someone would help him


Guest Fifi
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Dad saw his Gastrointerologist yesterday. He said there is nothing more he can suggest, to help with the diarrhoea. He is booked in for a breath this coming Wednesday and will see what the results are for that. Otherwise, we don't see him now until November.


His weight is now 9 stone 8. So he has put 8lbs on. Very pleased with him.


I am going with him to the hospital on Monday to learn how to flush his PICC line. Very nervous.


Leila xx

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PCUK Nurse Jeni

Hi Leila,


No, no creon needed with alcohol, unless its Baileys or a cream type liqueur drink. But not with anything else - unless, of course, as Nikkis suggested, he is having food of any sort with it! But guess he knows that now - he will be a pro on creon by now!


Hope the breath test goes well - let us know how it went Leila.


KR,


Jeni.

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Hi Leila,

I hope you are now proficient in all aspects of line flushing, bet you did fine, good news your Dad is continuing to put weight on. We have been away for a few days so I am just catching up, take care sandrax

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  • 1 month later...

Hope it is ok to post.


Feel a bit numb today. Dad has been to the hospital today for what he thought was blood test, before tomorrows chemo. He has been on a 4 week break, as he got bad mouth ulcers and fevers. They have said he is doing well, that he is fit and looks fit. They have taken out his PICC line and sent him home. They said they will monitor him every 2 month. I really don't know what to think about this. Obviously I am pleased that he is doing so well, but can he really afford to wait every 2 month? I don't know.


As for the diarrhoea. That is still fairly bad. Not 30 times a day but but possibly 10. He is taking 3 codeine 4 times a day, 14 40,000 creon with anything he eats, 12 loperamide a day and a 30mg Octreotide injection each month. His appetite is huge, like I've said before, he is eating what must be 6000 to 8000 calories a day. He has been weighed today and he is 10 stone 7. I have finally got him referred to a specialist in the city, rather than the one in town. Just waiting for the appointment to come through. He apparently specialises in Gastro problems relating to cancers.


Leila

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Hi Leila


I think there are different schools of thought about continuing chemo. It is a balance between continuing vs quality of life. I know with Jonathan the Oncologist told us that they didn't think there was anything to be gained at all by continuing. The last 2 cycles of folfironox that Jonathan had knocked him for 6 a bit so he was glad to have a break from it.


Great that your Dad seems to be doing so well and well done on the referral.


Cathy xx

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Hi Cathy,


Sorry, I don't quite understand. Are you saying that he's at the final stages now? I thought maybe they had sent him home because the chemo had shrunk it as far as it could, and he would restart when the cancer grew again?


Leila xx

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Hiya


No, not at all. With Jonathan the chemo had stabilised the disease so the Onc didn't feel there was anything to be gained by him staying on it when he had had quite bad side effects the last 2 cycles. He came off it with a view to going onto something else when symptoms re emerged. He wasn't going to go back onto folfironox because he was suffering a lot with the side effects of oxalyplatin. The hospital he went to generally did 8 cycles of chemo then a break which is what happened. I know other places might do more.


Cathy xxx

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Ho Leila, I was wondering how you and your dad were doing. It all sounds pretty positive and it must ge great to be off chemo for a while, though I know it is a bit unnerving comimg off it initially. As long as they are doing regular tests and reacting if anything seems to be of concern, then I am sure it will be fine.


Please give my best to your Dad and keep us updated on his progress.


Take care


Steve

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Hi Leila,


Great to hear that your Dad seems to be doing well. I don't have experience of chemo break yet, but I think it sounds positive what you've just said. I think they stopped it because your Dad is doing well. If he will have regular check ups and tests it should be all fine.

Keep us updated.


Take care,

Susanna x

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Thank you Cathy, Steve and Susanna for your kind words.


Think it was just a shock that he's not having chemo no more.


However, we have good news today. I have been pushing for 5 months for dad to have a breath test for Small Bacterial Overgrowth. He finally had the test in August and we have been waiting and waiting for the results. We got them today and he has tested positive for it. This is what has been causing his diarrhoea. I am so relieved. They can hopefully treat it now. The antibiotics for it have to be ordered and dad will start straight away. I hope with all my heart that this stops the diarrhoea for him.


I am going to do a separate post for those who are struggling with diarrhoea. I know LMD's father is similar to mine and I would like her to see it.


Leila xxx

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Hi Leila, Nice to see you posting I was worried as we hadn't heard from you for a while, glad to hear your Dad is doing ok, and having a well deserved rest from Chemo, I did post on your other thread, but, glad that you have got your long awaited results on the breath test, hope your dad continues to feel well, take care sandrax

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Thank you for replying Sandra, when you have so much to do yourself. Dad started pills today, he had swallowed them before I even got my shoes off!


Leila xx

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  • 2 weeks later...

Dad had CT scan yesterday. The consultant called him today to say he has blood clots and to go in straight away. They have told him he has blood clots on both lungs. Dad never asked questions, so this is all I know. I will call tomorrow for more information. He is going to be given an injection and then he has to inject himself everyday.


Can someone please tell me what this means? How dangerous is this? Can the blood clots go.


He also had a anxiety attack because he is so scared.


Leila x

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Hi Leila,

Others will also tell you that blood clots are quite common in PC., the cancer makes the blood stickier as does the chemo, making it prone to clotting. Paul has had 2 one in his arm(back in January)and one in one of the main arteries going into his heart, and he is ok. They are very serious but the fact that they have found your Dad's before they have caused any additional problems is good news, and the injections should break up the clot and stop any more forming. Warn your Dad that the injections bliming hurt and bruise, but they are very easy to do.

Hope that helps,

Nikki

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Leila,

Just in case Steve doesn't see this soon, if you go onto page 2 of his post you will see that he had a clot in his lungs, found on scan a while ago, and I believe he has had no further problems with this,

Nikki

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Nikki is 100% correct Leila. I have been on Clexane for 19 months now. They seem to be pretty painless now, though my tummy is noticeably tougher than it was at the outset.


Steve

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Leila, your poor Dad, all these things are so scary aren't they. Trevor also had a small clot in his arm just under his Picc Line, after about 8 sessions of chemo, he could feel it easily, he started on Fragmin injections and though it took a while it did dissolve. I appreciate its was no where near as serious as your Dad but he could physically feel it getting smaller as the drugs worked. I hope your Dad improves soon, take care sandrax

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Sorry my post was a bit short Leila, but to elaborate; my clot was also on my lung and I (like your Dad) was very lucky that it was picked up on a scan, as they can be quote serious if allowed to develop. I am still on the jabs as Pancreatic Cancer is apparently different to many other cancers because clots are both a symptom of Pancreatic Cancer as well as a side effect of chemo! Some people are apparently diagnosed with Pancreatic Cancer as a result of being Hospitalised with a clot!


The important thing is that your Dad's was picked up early and they are easily managed with daily injections.


I found I got used to the jabs quite quickly and inject in my stomach flab (yes, I still have some!). I can just about make out where the veins are and avoid them at all costs. If you hit one, it is quite sore and will bleed a little. I find the softer the flab is, the less it hurts.


I am sure your Dad will get used to doing this quickly.



Give him my best and take care.


Steve

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Hi Leila


Just read your post. Hope things are settling with your Dad. As others have said, clots do seem common with Pancreatic Cancer. My Dad also has an injection (self-administered) every day for a clot he had in his leg. The clot occurred several months ago after he began chemo.


I also saw that you mentioned my Dad (and I) in relation to the diarrhoea issue- (so thoughtful of you, thank you)

Things have changed with Dad and we are in hospital at the moment :-(

Take care xxx

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Hi Leila


Like your Dad, Jonathan also had blood clots and took Clexane for a few months, like Steve does.


Sorry this is so short ... Am off into a meeting


Take care


Cathy xxx

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Thank you so much for all your replies. We both had such a upsetting day yesterday. My dad was so scared. To have such brilliant and supportive replies really helped. Dad feels less alone and more confident, and I feel happier that he feels happier.

Nikki, they have bruised already but he isn't worried because of you and Steve. I know it would have worried him otherwise.

Steve, dad was scared to do it on his own today, but he did it and was ok. Though I made him jump by texting at the same time!

Sandra, dad is on Fragmin as well. I called the hospital today and asked them to explain it to me. They say he has small clots in each lung and she expects the Fragmin to dissolve them quickly.

We also got results of the CT scan today, which show no change. Which is fantastic to say he hasnt had chemo since August.

LMD, hope the post was helpful to you? Sorry your dad is in hospital. It must be so hard. I'm hoping it isn't to serious and that he will be home soon?


Dad Has asked me to ask, maybe Sandra would be the best person as Trevor has taken Fragmin. Dad says his Diarrhoea is now very dark and very metalic, coppery smelling. Would this be because of the injections? Or maybe the antibiotics working and its just change?


Leila xx

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Leila,

I am so pleased to hear the scan was ok. As we all know, with this, we stop worrying about one thing for a while and then something new crops up to worry about, but I am glad you are both feeling better about the clots.Your Dad has done well just cracking on and doing the injections, our local district nurse tells us they have to go in everyday to do some people's (for months in some cases!) but they are not that difficult.


Don't know about the changes in your Dad's stools. Paul has some blood in his stools if he has a lot of diarrhoea, which his doctors have put down to the clexane (does the same as fragmin) that he is on, but it is not something they worry about, but I think it is always worth mentioning. One thing that did happens was that if Paul cut himself he would bleed quite a bit, but this has become less of a problem with time. Have you noticed any less diarrhoea since your Dad started the antibiotics?

Best wishes,

Nikki

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Sorry, Leila, Apart from his reaction to the chemo last time (my fingers are crossed as I am saying this as I don't want to tempt fate) Trevor has not suffered with diarrhoea, and found the fragmin made no difference to his stools. sandrax

Edited by sandraW
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