CHEMOTHERAPY URGENT DECISION

User

Posted 18 Mar 2015 at 21:48

Wow, his leg looks amazing from the lymphedema clinic, the swelling has reduced considerably. He now just needs the stocking type for the near future. So thrilled for him.

The bloods were taken at pre-assessment at 2.30pm and we haven't heard so hopefully chemo tomorrow morning as planned. They will look at his stomach tomorrow, just to check.

I have given Dad my log in details, so he can read all your wonderful and supportive comments himself.

Thank you to all again, I will let you know how he gets on.

Jo x

User

Posted 19 Mar 2015 at 17:45

Hi all,

We are back from the chemotherapy, Dad has done really well. Fingers crossed this will be the way it is for the rest of coarse.

They were lovely on the unit which made things easier. The doctor on the ward checked the swelling to the left side of the abdomen and advise that it is probably muscular, and then checked his last scan and advised it was there previously.

I will keep you all updated.

Jo x

User

Posted 19 Mar 2015 at 18:13

Hi Jo

So glad that all has gone well with your dad today for his first chemo session. He sounds like an amazing man!! I know exactly how you are feeling at the moment as my dad starts his chemo docetaxel tomorrow morning. He is also a very positive person which I think must help them cope with the treatment and any side effects.

I look forward to keeping up to date with his progress.

Take Care

Rachel

User

Posted 21 Mar 2015 at 09:43

Thank you Rachel, how did your dad get on? We are lucky to have such special dads. Mine felt only a little sick on the night of the chemotherapy and had a sick tablet and felt fine. He has been having short walks with me and the dogs. Although he is not sleeping so well, some of that is due to the need to go to the toilet.

Hope all is well with you and yours.

Jo x

User

Posted 21 Mar 2015 at 12:29

Hi Jo.

Glad to hear that your dad is doing so well and yes you're right, we are very lucky to have such fantastic dads.

He did very well yesterday with the chemo. I spoke to him last night and he said he didn't feel any different than he did before he had the treatment! So far, so good!! As far as sleeping goes, my dad can sleep anywhere at anytime so long may that continue. Hope your dad continues his good progress and I look forward to swapping updates with you along their way x

Take care

Rachel

User

Posted 24 Mar 2015 at 12:09

Hi Rachel and all you other lovely people.

Just a quick update, Dad seemed not to bad for the first 2 days after the treatment, but is now extremely fatigued and has no appetite. He has pain in his back. We believe that this is possibly the side effects of the drug, but I am going to phone the chemotherapy day unit for advice, they will possibly give me some help with food supplement.

I hope all are well out there.

Jo x

User

Posted 24 Mar 2015 at 12:51

Hi Jo,

Sorry to hear that your dads having a tough time.

On my second cycle of chemo i had terrible back pain they said this was a tumor shrinking that caused it. My Mac nurse brought lots of pain killers round but within a couple of days it was gone and never came back.

Is your dads lack of appetite down to his taste buds, every cycle i had for 5 days everything tasted of rubber, for that time i lived on ice cream.

Hope things improve soon

Si x

Don't deny the diagnosis; try to defy the verdict

User

Posted 24 Mar 2015 at 22:34

Hi Jo and others

Sorry to hear that your dad has succumbed to a couple of the side effects of the chemo. Hopefully the fatigue and appetite loss wont last for too long. My dad has been very similar, he spent the first 2 days feeling fine, then the last 2 days sleeping a lot.

Interesting what you say Si, about back pain. My dad has said that his coccyx and shoulder have been quite painful since treatment on Friday. His coccyx is where his pain has always been and was the reason for diagnosis in the first place. Would be great if this was a sign of shrinkage.

Hope to hear that your dad is feeling better soon Jo.

Take care

Rachel

User

Posted 31 Mar 2015 at 00:08

Hi Rachel, I sincerely hope that it is a sign of shrinkage we can live in hope. We have been to see the oncologist today and he is happy to continue with the second course of chemo next week on the 9th April, but he wants to continue on the slightly lesser dose, I suppose if it ain't broke don't fix it. He would hate my dad to be completely floored on the full dose. He will review in 6 weeks. He said that if Dad improved they may not scan to see how he has reacted to treatment, but if he is still the same they will do.
Dad has had a couple of bad days and a couple of good days, so we are hoping the good outweigh the bad prior to his treatment next week. What a trooper he is, as I suspect your dad is. There chemo side effects seem similar, and my dad did suffer with the sore mouth a couple of days ago, I hope all going well for your dad.

My sister is making shakes with almond milk, linseed and fruit at present to ensure he gets all his vitamins.

Jo x

User

Posted 31 Mar 2015 at 09:28

Jo, Well done for being such a great support to your Dad !

Fiona x

User

Posted 01 Apr 2015 at 00:28

Thank you Fiona. x

User

Posted 01 Apr 2015 at 01:08

Jo you and Rachel are both doing a great job supporting your Dads ..it was a massive benefit to me having my daughter Karen at my side whenever she could be, it made her Dad triple proud of her too.

User

Posted 02 Apr 2015 at 00:01

Thank you Mo. It has made us closer than ever, which is very special for both of us. It must be special for you and your daughter.

Dad is having better days at the moment, we are heading to the next chemotherapy next week on the 9th, I have booked his bloods at the doctors surgery for 2 days before, so depending if they are ok, we should be good to go.

The swelling to his side is believed to be a muscle/hernia, but isn't bothering him to much thank goodness at present, probably got by lifting the heavy coal bucket doing the fire, what a man, so determined.

Jo x

User

Posted 09 Apr 2015 at 11:08

We are off this afternoon for Dads 2nd chemotherapy. Fingers crossed it won't affect him too bad next week. I have noticed his pain seems to be a little worse since his 1st chemotherapy. He is logging the extra oral morphine he is taking, to discuss with the Macmillan nurse as to whether he needs his medication increased.

Jo x

User

Posted 09 Apr 2015 at 14:45

hope all goes well today, sometimes the pain can get worse initially, Mick had to increase his pain meds and an additional drug called Lyrica added (it is one which works on pain spasms by treating within the nervous system) Using Oramorph should only be to manage break through pain and not as a long term relief so if he is having to use it much more often then his basic pain meds do need reviewing.

best wishes

User

Posted 09 Apr 2015 at 17:46

Hi Jo

Have been away for the past 10 days and only got back today. Hope your dad's chemo went well today and that his side effects aren't too bad. You mentioned before that he had lost his appetite. Did he get that back?

My dad's next chemo is meant to be tomorrow but I got back from holiday to find that he hasn't been too good for the last 4 or 5 days, back to feeling very fatigued and now off his food a bit (even though they told me everyday I was away that he was fine). Not sure if there is more going on that they are not telling me, but apparently they are not sure if 2nd chemo will go ahead tomorrow. Think it's really getting him down.

Thanks Mo for the kind words. My Dad lives in Kent, whilst I live in Glos so it isn't easy to be with him as much as I would like.

It's nice to be back on here and back in touch with everyone.

User

Posted 12 Apr 2015 at 23:58

Hi All,

What a weekend. Dad did have his chemotherapy, but they also booked him in as a day patient on Saturday for 2 units of blood.

His Chemotherapy was on Thursday, and I called round to see him with my daughter Friday teatime, he was going to light the fire, he took a small mat outside caught his foot and fell over, banging his head on a plastic plant pot and bruised his side. It gave him and the rest of us a shock, he was more bothered trying to reassure my 10 year old that he was fine, bless him.

We were at the hospital all Saturday getting his blood transfusion.

Today he is tired and has pain at the base of his back. His appetite is reducing again now. His appetite did improve slightly prior to his next treatment, but has never been fully regained. My sister makes my dad shakes most days, which apparently look disgusting but taste nice, they are made with almond milk, vanilla extract and different fruits, so we feel happy if he doesn't eat much else he has had vitamins in this drink and it is all natural. We wait to see how he is feeling for eating and all rush out to get whatever he fancies, as the following day he may not feel like eating at all. All dinners are made on a small tea plate so he doesn't feel put off. Its hard watching this big man not eating as well as he used too, but he is still with us and we are grateful. We all piled in the car last weekend and headed for a drive and stopped at a local fish and chip café, when he felt okay. It was fantastic the whole family together.

His Oncologist wants to keep him on the slightly reduced chemotherapy dose as he does not want to tempt providence.

I think Mo is right about his pain relief and I think a talk with the Macmillan is due. He has been logging the extra oral morphine he is talking so she can assess him.

Rachel I hope all is okay with your dad. It is a constant worry.

Much love and thoughts to all you brave people.

Jo x

User

Posted 13 Apr 2015 at 05:56

what a weekend for you all, ask your Dad if his fall was because he tripped or is he getting weakness in his legs. Sometimes the drugs and treatments and indeed the cancer itself can cause what I used to refer to as Jelly legs. If he does feel like his legs are a bit wobbly please make sure you tell the oncology team about this as well as about the increasing pain in his back.

The anaemia and low blood counts can cause a bit of diziness and fainting feelings as well. However there is a condition and compiication in spinal mets called Cord compression it can be detected on an MRI scan and if it is picked up quickly it can be treated quite successfully, usually with a short but quite intense series of localised RT. This can also relieve the pain significantly. If it is not detected or goes untreated it can cause much bigger problems. I do not want to cause you any unnecessary worry but It is something you need to be aware of. Your Dad should have a little leaflet telling you all about symptoms and what to do if you suspect it. If he does not then you should ring the nurse specialist or the Onco consultant's secretary and ask them to send you one in the post today,

Your Dad will have been given the 2 units of blood to boost hs blood count and reduce anaemia which is a very common practice and can be repeated quite regularly. Usually this does give quite a boost to well being along with the chemo steroids so this might help bring back a bit of appetite as well. The shakes your Sister is making are a great idea as well, you can also get high protein and calorie shakes on prescription, Mick really liked these and just one small carton is the equivalent of a good snack. Making meals small in appearance is also a really good thing. In fact I applaud you all as you seem to be doing the right things naturally.

Keeping the reduced dosage chemo is also a standard practice amongst oncologists when treatment is palliative. It helps to keep a balance in quality of life which really is important.

Thinking of you all

best wishes

Edited by member 13 Apr 2015 at 05:58 | Reason: Not specified

User

Posted 18 Apr 2015 at 16:18

Hi Jo

ight

Sorry I haven't replied for a while, I have had so much trouble getting onto this forum. I am now trying a different laptop and hoping this will help!!

Sorry to hear that your dad had a fall just after his last treatment. I hope he is on the mend from that now. Sounds like you and your family are doing a great job looking after him, especially with his fruit smoothies and his smaller plates. Hopefully it's making a difference to him.

My dad wasn't feeling too well at all the day before his last chemo (felt quite dizzy and weak), however, he perked up a bit the day of the chemo and they did do it. He was, however, admitted to the hospital on Monday night

due to having terrible pains in his head. They did a scan of his brain (expecting to find more spread) but fortunately found nothing. He was also sick a couple of times after the scan, after which he felt much better and the head pains went too. He was kept in for a couple more days so they could try and sort out his potassium/sodium levels and finally came home on Thursday night. He was very sleepy again yesterday but feeling a little better so far today.

Hope your dad is not suffering too much from side effects after his 2nd round of chemo. It certainly takes it out of them doesn't it.

Kind regards

Rachel

ps. I would really like to keep in touch with you Jo, so would it be ok for me to PM you if I can't get on this forum successfully (that's if it will let me on to message you in the first place, of course)!!

User

Posted 03 May 2015 at 22:21

Hi All, (and Rachel)
I haven't managed to get on for a while. It can be hard being daughter, mum, wife, sister, friend and run your own business. However, my priority is of course my dad. After the initial rocky start after his second chemo, he managed better than his first chemo after the 2 units of blood. He was delighted with a surprise visit from his brother from Swindon for a couple of days which gave him a boost.

We went to see the oncologist earlier in the week prior to his third chemo. He has booked a CT scan within the next 2 weeks, this will establish whether the chemo has made any difference to the cancer. It is a bit scary as if there is no significant change they will withdraw the chemo and no further treatment will be offered. We of course have everything crossed, he is such a fighter and was getting about, doing and hanging out washing, cooking and out with the dog a little last month. He didn't lose his appetite too much either.

His 3rd chemo was on Thursday, it was a long day as the drug wasn't ready and we had to wait a long time. His bloods showed his HB had increased from 84 to 99 but still low, I asked if it was possible for another transfusion as I thought it had helped. They agreed to 1 unit which he had on Friday. I also noticed the had to contact the oncologist as his liver reading was slightly high. I hate this disease.

Unfortunately, he has been quite unwell yesterday and today. It is heart-breaking as he is such a strong man, but he really can not push himself, the fatigue is awful, he is not able to eat much again, his mouth is sore and his back pain bad. He was sitting downstairs falling asleep, we told him he should go to bed and rest bless him and he did just cuddled down, couldn't be bothered with tv or anything. When he is relatively ok I will sit in the bed and cuddle up and watch tv with him. I really hope that he improves soon.

He has also lost a cap off one of his back teeth, although dentistry is not recommended, he is going to see if the dentist can just stick it back in place temporarily as he will get toothache.

Rachel of course you can PM me, I would love to stay in touch. x

Notification

Join the online community now.