I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Dad's oncology appointment

Email this conversation Print this conversation
User
Posted 02 Mar 2018 at 17:53
Hi all,

Just thought I'd come on to say what's happening with dad. He had an oncology meeting today where we were told he would be getting 6 cycles of docetaxel chemotherapy beginning on Monday. We are glad this time has come but I'm very scared of what the side effects may bring. I hope he copes well and that it's effective for him as we want him around for as long as is possible.

He has no more back pain since starting the decapeptyl injections in January so the oncologist said that is a good sign already.

He was told to take some dexamethasone before the chemo. There was a bit of confusion about when as the doctor seemed to put the wrong instructions on the prescription but after double checking with the oncologist he has to take them at 10pm Sunday night, 7am Monday and 9am Monday for chemo that day.

Chemo is so daunting. And that's only for us who love him I can't begin to think how he must feel.

I think all I'm looking for is for you guys to tell me it's not the worst thing in the world, it's a positive that he's getting it and that it will be worth it all. Everyone is different as we know but reassurance is welcomed.

Thank you.
Miffy
User
Posted 12 Mar 2018 at 17:36

I hope your Dad is doing well.


When on docetaxel, I experienced very mild, almost non-existent, side effects. No sickness etc, Only slight aches in some joints for a few hours for about 1 day on say day 3 after an infusion. These aches were easily dealt with by taking paracetamol.


The worse bit was self inflected: I choose to wear a cold cap and the first 5 mins gave me a frozen headache that I’d only ever had when scoffing an ice lolly as a lad. But I soon learnt to take a couple of painkillers 30 mins before wearing the cold cap and the cap meant I kept what little hair I had!


The routine at my hospital is that locals come in over 2 days and those from far away enjoy the one stop treatment. Bloods were taken and checked 1-2 hrs later and decision made on whether I returned the following day for the infusion.


My main advice is to hold onto the yellow card notifying medics that your dad is on chemo and therefore potentially vulnerable to infection. If your dad gets a sore throat,  raised or lowered temperature or any of the other warning signs, check with your hotline and if you need to go to A$E for antibiotics make sure that the triage nurse reads (and understands) the yellow card, which essentially notifies medics that they are required to follow an emergency protocol that you get seen immediately. No waiting!


Best wishes. I hope this is of use.

User
Posted 03 Mar 2018 at 03:49

Best wishes to your dad Miffy my OH along with others have found chemo a lot easier than we were expecting ,the nurses on hand will explain everything and I’m sure it will be fine .The whole procedure usually took less than 2 hrs ,just tell dad to listen to his body and take things easy .
Debby

User
Posted 03 Mar 2018 at 10:02

Hi Miffy,

You already have my chemotherapy story so just to say best of luck to your dad and to tell him to take a good book or headphones and some music. He may not be as lucky as Merrivale’s OH. The quickest of my treatments was just under 4 hours - and that was with everything going like clockwork.

Dave

User
Posted 03 Mar 2018 at 22:04

Just a quick one about the Dexamethasone. Obviously for now your dad will have to take them as instructed but I would suggest that he asks at his first session if it’s ok to take the dose prescribed the day before chemotherapy earlier than 10pm. The steroid effect will probably mean that he won’t sleep much that night. That was the time I was told at first but my chemotherapy nurse at the first cycle advised that I take them much earlier than that to help avoid sleeplessness.

Dave

User
Posted 05 Mar 2018 at 00:30

The lack of sleep will be stress related and hardly surprising. The shock of having cancer, and the what initially seem drastic treatments, not to mention the realisation of everyone else’s worries are going to take their toll. There are things that can help. I currently am prescribed Sertraline for anxiety and Zolpidem for sleeplessness. I realise that not everyone wants to take these forms of medication but I found that a good nights sleep and being able to face the day without constant panic and climbing the walls makes life so much easier and happier. Neither of them give extreme feelings like unwanted euphoria etc but I am certainly living a far more happy and relaxed life than I was at the early diagnoses/treatment stage. My family have been a massive influence on how I feel now but the medications certainly have their place when used for the right reasons.

All the best

Dave

Edited by member 05 Mar 2018 at 08:23  | Reason: Not specified

User
Posted 05 Mar 2018 at 23:23
Tumeric is fine to take with the treatment. If you have any questions ring the helpline numbers that they would have given you at the time of treatment. Make sure your Dad takes his temperature regularly and any temperature above 38°c at any time or above 37.5°c at any two readings, taken an hour or more apart ring the helpline immediately. My partner had a temperature of 37.7°c as it happened we were due to see the oncologist that afternoon (about 7 days after the chemo), she ended up admitting him to a virtual isolation ward over the weekend (four nights) on an antibiotic drip. Everyone who visited had to put on gloves and an apron! He was very susceptible to infection and his neutrophils count was very low, thankfully with their care he got over it and his count came back up quickly, but if he had not been taking his temperature it could have been very different, sepsis can come on very quickly and can kill. I found out later he had had neutropenic sepsis which is classed as a MEDICAL EMERGENCY. Other than that the Docetaxel treatment went without any other problems.
User
Posted 07 Mar 2018 at 01:37
My partner was given sickness tablets but never took them as he did not feel sick at any point. I got him to take his temperature about every four hours through the day. I think the days that they are most open to infections are between the 5th and 10th days. Apart from the temperature there was no other sign, thankfully they caught it very early and got him on antibiotics, think they kept him in so long because it was over weekend and they did not want us to have to go into a&e on a Friday or Saturday night if he had to be readmitted. I presume they gave your father a card to carry with him saying he is on Steroids and is having chemo? It is important to take it wherever you go.
User
Posted 07 Mar 2018 at 10:06

I took the sickness tablets for the first three days after each treatment as I was advised that prevention was better than cure. I was given a full pack each time initially until I said I didn’t need anymore. So yes I did get more than three days worth but I never took them longer than that. I had bouts of retching quite regularly but not bad enough to do anything about.

As for temperature - I took that twice a day.

And just to add to Kita’s advice about the card. If your dad is unlucky enough to have to call the NHS out of hours service he must make them aware he is on chemotherapy. This all sounds a bit scary but is important.

Dave

Edited by member 07 Mar 2018 at 10:13  | Reason: Not specified

User
Posted 07 Mar 2018 at 17:35

Jiffy, I think three days might be tad optimistic. It could run into four or five if you unlucky.. I found the nausea effect diminishes gradually and not dramatically. On the fourth and fifth days, fewer tablets anyway, but hopefully none!

AC

User
Posted 13 Mar 2018 at 09:49
Originally Posted by: Online Community Member
Muddy how is your Dad doing? X


Hi PenP,

It was a week yesterday since dad's first chemo and so far so good. Got that taste people talk about but that's been it really. The nurses said days 7-10 usually the worst so I think he's a bit apprehensive but he's coped ok up to now thank goodness.
Miffy
Show Most Thanked Posts
User
Posted 02 Mar 2018 at 23:37

Well my father in law had chemo at age 79 and the biggest problem he had was the horrible metallic taste, and the fact that his wife wouldn't let him go to the pub in case he got an infection!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Mar 2018 at 00:01
Fantastic! If that's all dad's got to worry about then I'll be happy so fingers crossed! Thanks for your reply.
Miffy
User
Posted 03 Mar 2018 at 03:49

Best wishes to your dad Miffy my OH along with others have found chemo a lot easier than we were expecting ,the nurses on hand will explain everything and I’m sure it will be fine .The whole procedure usually took less than 2 hrs ,just tell dad to listen to his body and take things easy .
Debby

User
Posted 03 Mar 2018 at 10:02

Hi Miffy,

You already have my chemotherapy story so just to say best of luck to your dad and to tell him to take a good book or headphones and some music. He may not be as lucky as Merrivale’s OH. The quickest of my treatments was just under 4 hours - and that was with everything going like clockwork.

Dave

User
Posted 03 Mar 2018 at 22:04

Just a quick one about the Dexamethasone. Obviously for now your dad will have to take them as instructed but I would suggest that he asks at his first session if it’s ok to take the dose prescribed the day before chemotherapy earlier than 10pm. The steroid effect will probably mean that he won’t sleep much that night. That was the time I was told at first but my chemotherapy nurse at the first cycle advised that I take them much earlier than that to help avoid sleeplessness.

Dave

User
Posted 04 Mar 2018 at 09:20
Hi Miffy27 just to let you know my Dad is 72 and started chemo at the end of February this year. Like you we were all really frightened about the idea of chemo so I understand how you are feeling. Our experience so far is that yes, the steroids prevented him from getting much sleep (so rest when possible), the actual chemo being administered took one hour, Dad sucked on pineapple lollies (recommended) whilst having it and at the end, we were given a ‘red folder’ full of information should we need it. Dad spent the whole of the following week resting as much as possible on the settee (which he wouldn’t normally do but tried to do too much the day after and realised he had to listen to his body). I’d also recommend writing a diary of how he’s feeling because this is useful to look back on but also to let the medics know how you are day to day. I’ll post another update on my page when Dad has his next one. Thinking of you all xxx
User
Posted 04 Mar 2018 at 14:30
Originally Posted by: Online Community Member

Just a quick one about the Dexamethasone. Obviously for now your dad will have to take them as instructed but I would suggest that he asks at his first session if it’s ok to take the dose prescribed the day before chemotherapy earlier than 10pm. The steroid effect will probably mean that he won’t sleep much that night. That was the time I was told at first but my chemotherapy nurse at the first cycle advised that I take them much earlier than that to help avoid sleeplessness.

Dave



Thanks for the heads up Dave. He's not getting much sleep as it is since diagnosis but the consultant said it's stress related.
Miffy
User
Posted 04 Mar 2018 at 14:46
Originally Posted by: Online Community Member
Hi Miffy27 just to let you know my Dad is 72 and started chemo at the end of February this year. Like you we were all really frightened about the idea of chemo so I understand how you are feeling. Our experience so far is that yes, the steroids prevented him from getting much sleep (so rest when possible), the actual chemo being administered took one hour, Dad sucked on pineapple lollies (recommended) whilst having it and at the end, we were given a ‘red folder’ full of information should we need it. Dad spent the whole of the following week resting as much as possible on the settee (which he wouldn’t normally do but tried to do too much the day after and realised he had to listen to his body). I’d also recommend writing a diary of how he’s feeling because this is useful to look back on but also to let the medics know how you are day to day. I’ll post another update on my page when Dad has his next one. Thinking of you all xxx


Hi PenP,
Thanks so much for the tips, it's comforting to read that other people are going through this and it's not as bad as we are expecting. Obviously everyone is different but this has definitely given us some reassurance and hope that dad will cope just fine. He's a fit and healthy 65 year old so fingers crossed he takes it all in his stride. Hope it goes smoothly for your dad. Xx
Miffy
User
Posted 05 Mar 2018 at 00:30

The lack of sleep will be stress related and hardly surprising. The shock of having cancer, and the what initially seem drastic treatments, not to mention the realisation of everyone else’s worries are going to take their toll. There are things that can help. I currently am prescribed Sertraline for anxiety and Zolpidem for sleeplessness. I realise that not everyone wants to take these forms of medication but I found that a good nights sleep and being able to face the day without constant panic and climbing the walls makes life so much easier and happier. Neither of them give extreme feelings like unwanted euphoria etc but I am certainly living a far more happy and relaxed life than I was at the early diagnoses/treatment stage. My family have been a massive influence on how I feel now but the medications certainly have their place when used for the right reasons.

All the best

Dave

Edited by member 05 Mar 2018 at 08:23  | Reason: Not specified

User
Posted 05 Mar 2018 at 18:12

Well we went today. He was in good spirits all day although high blood pressure gave away how anxious he really was. His appointment was for 8.45am and we got out at 5.10pm, they weren't exaggerating when they said make no plans for that day.

Just to wait now and see how he copes with the treatment. Away home with a goodie bag of steroids and anti sickness tabs. He has an appointment tomorrow with his doctor which hopefully he is fit to go to. I'll tell him to mention his stress and problems sleeping as there's no need for him to struggle through with nothing to help him.

On another note, is turmeric alright to take with the docetaxel? I hear good things about this but forgot to ask today.

Thanks

Miffy
User
Posted 05 Mar 2018 at 18:28
Well done to Dad for getting through the day. Can I ask though, how come you had to be there all day? Just curious. My Dad has 10x sessions but we are just taking things a day at a time right now xxx
User
Posted 05 Mar 2018 at 18:45
Originally Posted by: Online Community Member
Well done to Dad for getting through the day. Can I ask though, how come you had to be there all day? Just curious. My Dad has 10x sessions but we are just taking things a day at a time right now xxx


It was pretty busy I don't know if that had something to do with it. And I think there was a bit of a back log, i had overheard that some people were meant to go last week but couldn't because of the weather. Also it was dad's first one so he got bloods taken in the morning and didn't get the treatment until around 4pm. We stuck around just to keep his spirits up it was a long day but would have felt a lot longer if he didn't have us to distract him. Hopefully the next one isn't so long the treatment itself was only an hour or so, the rest was just waiting about!

That's all you can do, just take it in your stride. Hope he copes ok with his treatment.
Miffy
User
Posted 05 Mar 2018 at 19:36

Glad everything went ok - except for the delay. I found that pretty much happened every time for different reasons. Not so bad if you just accept that’s all you are going to be doing that day.

User
Posted 05 Mar 2018 at 20:20

Just reread the posts from today Miffy. One of the reasons for your dad’s delay would have been because of him not having his bloods done until today. Once they have been taken and analysed the doctor then has to write the prescriptions for the treatment and I’m guessing give him a check up as well. The bloods and prescriptions are then checked and double checked before the prescription can be issued - and then it has to reach the ward/treatment room!

Dave

User
Posted 05 Mar 2018 at 21:08
Originally Posted by: Online Community Member

Just reread the posts from today Miffy. One of the reasons for your dad’s delay would have been because of him not having his bloods done until today. Once they have been taken and analysed the doctor then has to write the prescriptions for the treatment and I’m guessing give him a check up as well. The bloods and prescriptions are then checked and double checked before the prescription can be issued - and then it has to reach the ward/treatment room!

Dave



That makes sense! There was quite a wait between getting bloods and the beginning of treatment. He did actually get a blood test with the oncologist on Friday but that's maybe been something completely different then. I'm assuming that was psa related and today's is for the white cell count etc?

They gave him stuff to take down to his gp surgery so that he can get the bloods taken on a Friday before chemo on the Monday from now on so that should help speed things up. But to be honest it's a small price to pay as long as it works how it's supposed to I don't think he minds in the slightest!

Edited by member 05 Mar 2018 at 21:18  | Reason: Not specified

Miffy
User
Posted 05 Mar 2018 at 22:21

That was what I did - bloods done locally on the Friday beforehand. There was a sting in the tail though. I had to attend clinic at the cancer centre for bloods results and checkup the day before treatment. A round trip of 80 miles on two consecutive days. But as you say a small price to pay .

User
Posted 05 Mar 2018 at 23:23
Tumeric is fine to take with the treatment. If you have any questions ring the helpline numbers that they would have given you at the time of treatment. Make sure your Dad takes his temperature regularly and any temperature above 38°c at any time or above 37.5°c at any two readings, taken an hour or more apart ring the helpline immediately. My partner had a temperature of 37.7°c as it happened we were due to see the oncologist that afternoon (about 7 days after the chemo), she ended up admitting him to a virtual isolation ward over the weekend (four nights) on an antibiotic drip. Everyone who visited had to put on gloves and an apron! He was very susceptible to infection and his neutrophils count was very low, thankfully with their care he got over it and his count came back up quickly, but if he had not been taking his temperature it could have been very different, sepsis can come on very quickly and can kill. I found out later he had had neutropenic sepsis which is classed as a MEDICAL EMERGENCY. Other than that the Docetaxel treatment went without any other problems.
User
Posted 06 Mar 2018 at 09:45

Oh my goodness.
As far as dad was told it was take your temperature when you're not feeling great but I'll tell him to check it regularly regardless. I'm sure that was scary for you all!

Thank you for making us aware of that.

Miffy
User
Posted 06 Mar 2018 at 22:29

As I’ve told you I didn’t have any major issues but took my temperature regularly nonetheless

Dave

User
Posted 06 Mar 2018 at 23:03
Not a bad habit to get into. One day after chemo and all going well so far which is great. I noticed that they've only given metoclopramide for sickness for 3 days after treatment. Did anyone experience sickness past the 3 days?
Miffy
User
Posted 07 Mar 2018 at 01:37
My partner was given sickness tablets but never took them as he did not feel sick at any point. I got him to take his temperature about every four hours through the day. I think the days that they are most open to infections are between the 5th and 10th days. Apart from the temperature there was no other sign, thankfully they caught it very early and got him on antibiotics, think they kept him in so long because it was over weekend and they did not want us to have to go into a&e on a Friday or Saturday night if he had to be readmitted. I presume they gave your father a card to carry with him saying he is on Steroids and is having chemo? It is important to take it wherever you go.
User
Posted 07 Mar 2018 at 10:06

I took the sickness tablets for the first three days after each treatment as I was advised that prevention was better than cure. I was given a full pack each time initially until I said I didn’t need anymore. So yes I did get more than three days worth but I never took them longer than that. I had bouts of retching quite regularly but not bad enough to do anything about.

As for temperature - I took that twice a day.

And just to add to Kita’s advice about the card. If your dad is unlucky enough to have to call the NHS out of hours service he must make them aware he is on chemotherapy. This all sounds a bit scary but is important.

Dave

Edited by member 07 Mar 2018 at 10:13  | Reason: Not specified

User
Posted 07 Mar 2018 at 17:35

Jiffy, I think three days might be tad optimistic. It could run into four or five if you unlucky.. I found the nausea effect diminishes gradually and not dramatically. On the fourth and fifth days, fewer tablets anyway, but hopefully none!

AC

User
Posted 07 Mar 2018 at 18:28

Ok, I'll have to get him to get more then just in case. The tablets must be doing their job as he still seems ok today. Thank you all so much for your input. It's good to have somewhere to ask questions and get answers from people going through it. It's very much appreciated!

Miffy
User
Posted 11 Mar 2018 at 20:39
Muddy how is your Dad doing? X
User
Posted 12 Mar 2018 at 17:36

I hope your Dad is doing well.


When on docetaxel, I experienced very mild, almost non-existent, side effects. No sickness etc, Only slight aches in some joints for a few hours for about 1 day on say day 3 after an infusion. These aches were easily dealt with by taking paracetamol.


The worse bit was self inflected: I choose to wear a cold cap and the first 5 mins gave me a frozen headache that I’d only ever had when scoffing an ice lolly as a lad. But I soon learnt to take a couple of painkillers 30 mins before wearing the cold cap and the cap meant I kept what little hair I had!


The routine at my hospital is that locals come in over 2 days and those from far away enjoy the one stop treatment. Bloods were taken and checked 1-2 hrs later and decision made on whether I returned the following day for the infusion.


My main advice is to hold onto the yellow card notifying medics that your dad is on chemo and therefore potentially vulnerable to infection. If your dad gets a sore throat,  raised or lowered temperature or any of the other warning signs, check with your hotline and if you need to go to A$E for antibiotics make sure that the triage nurse reads (and understands) the yellow card, which essentially notifies medics that they are required to follow an emergency protocol that you get seen immediately. No waiting!


Best wishes. I hope this is of use.

User
Posted 13 Mar 2018 at 09:49
Originally Posted by: Online Community Member
Muddy how is your Dad doing? X


Hi PenP,

It was a week yesterday since dad's first chemo and so far so good. Got that taste people talk about but that's been it really. The nurses said days 7-10 usually the worst so I think he's a bit apprehensive but he's coped ok up to now thank goodness.
Miffy
User
Posted 13 Mar 2018 at 09:53
Originally Posted by: Online Community Member
I hope your Dad is doing well.


When on docetaxel, I experienced very mild, almost non-existent, side effects. No sickness etc, Only slight aches in some joints for a few hours for about 1 day on say day 3 after an infusion. These aches were easily dealt with by taking paracetamol.


The worse bit was self inflected: I choose to wear a cold cap and the first 5 mins gave me a frozen headache that I’d only ever had when scoffing an ice lolly as a lad. But I soon learnt to take a couple of painkillers 30 mins before wearing the cold cap and the cap meant I kept what little hair I had!


The routine at my hospital is that locals come in over 2 days and those from far away enjoy the one stop treatment. Bloods were taken and checked 1-2 hrs later and decision made on whether I returned the following day for the infusion.


My main advice is to hold onto the yellow card notifying medics that your dad is on chemo and therefore potentially vulnerable to infection. If your dad gets a sore throat, raised or lowered temperature or any of the other warning signs, check with your hotline and if you need to go to A$E for antibiotics make sure that the triage nurse reads (and understands) the yellow card, which essentially notifies medics that they are required to follow an emergency protocol that you get seen immediately. No waiting!


Best wishes.I hope this is of use.



Hi Mickey,

Thanks for that. Dad's in a similar position he hasn't experienced any sickness as of yet which is great. He's not worried about the hair he's lucky in that he shaves it all off anyway says will save him from doing it! Sense of humour is important, if we don't laugh we cry. I had a look in his pack the other day and couldn't see the warning cards people have been telling me about. I'll have to check again. Thanks for reminding me!
Miffy
User
Posted 13 Mar 2018 at 11:37
Miffy sorry I called you Muddy :o)
User
Posted 13 Mar 2018 at 14:10

Miffy, the warning cards could well be in the steroids packs as I seem to remember that is what they should be carried for rather than actual chemotherapy.

Dave

User
Posted 13 Mar 2018 at 15:15

Hi Miffy


I should have said that my hospital uses a yellow Alert card, but other hospitals may use different coloured ones.


Essentially the wording is something like that shown in the images in this article. ..


 


https://goo.gl/images/Vs2vvp


 


Show it if you have to go to A&E.


 


Best wishes


 


M

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK