CHEMOTHERAPY URGENT DECISION

Hi Jo,

This is such a difficult time for you and your Dad and I am afraid there are no easy answers. It does sound as if your Dad knows his own mind and therefore as others have suggested if he is up for chemo then cycle by cycle he can try it. The medics will withdraw it if his body is struggling with it. Knowing that you support whatever decision he takes will be crucial. I know from my own experience that having my children behind my decisions makes it all manageable. You are having to manage impossible alternatives and whichever route you take you are moving to the point where the options disappear. I don't say this lightly but because the reality of treatment for those of us with spread is that at some point, the treatments run out! If you sense that your Dad is ready to say enough is enough on the treatment front then your role is even greater to support him through the rest of his life, to enable him to get as much from it as he can. You may not be there yet but look to this site for support at whatever stage you reach.

Don,t forget you have support here from a variety of individuals whose common experience is this Cancer. We are all thinking of you and hope that if chemo is the choice it affords some relief. He sounds a real fighter.

Hi Jo,

Just to re-iterate what others have posted. If your Dad goes for chemo, it will be closely supervised and it is possible to delay cycles if he reacts badly or there are other complications.  People react differently to chemo, my partner felt it was one of the easier treatments to cope with so there is no hard and fast rule. Get plenty of support for yourself at what must be a very difficult time. We are always here for you on the forum.

Fiona.

Just wanted to wish you and your Dad all the luck in the world, he's certainly someone who deserves it for all the strength and determination he has shown.

Best Wishes,

Steve

this is a big decision that your Dad has made, it is obvious from your posts that you love him very much indeed.

The first chemo session will also be one where a great deal of information is given to your Dad about managing any side effects and seeking any help should he need it. If the hospital will let you and providing your Mum is not still poorly it would be great if one of you could go and sit with him. Firstly to provide a hand to hold and some loving support and secondly to take some notes and try to absorb as much information as you can. Dad will be given a chemo record book make sure you understand what that is all about. Feel free to ask anything you need to on here too.

It is quite normal in your Dad's situation for the starting dose to be reduced, in some cases it is kept at the lower level throughout and in others only increased if he is tolerating it well and showing good benefits. It is a balance to try and ensure the best quality of life.

There are a few things that can help alleviate the possible side effects.

freezing some pineapple cubes and then sucking on them during chemo has helped many men avoid the taste issues and mouth soreness that can develop. using a mild antibacterial mouthwash every day can also help with that.

Others have said using a moisturising hand and foot cream and a nail cuticle nourisher helps protect nail beds and keep skin free from dryness that can cause cracking and soreness.

The steroids that are part of the chemo shold help with appetite but anaemia can become a bit of an issue, normally this is not due to a lack of iron intake it is just that the body cannot absorb it and so taking iron supplements or eating lots of spinach and high iron content foods may not help. Sometimes blood transfusions are necessary usually just a few units of blood will often help significantly.If this is needed a cross match test will be done first and then the blood infused over a few hours (about 90 mins -2 hours per unit)if it is deemed necessary it is usually done a few days before a cycle of chemo just to provide that extra lift in blood cell counts. they do provide a big lift in well being which can last for several weeks.

I wish your Dad all the very best and of course to you and your Mum too

xx

Mo

I hope your Dad does get to start his chemo, I hope this message will help you a little and maybe give you some hope. My Husband was really suffering badly before he had chemo he could hardly walk his legs were so weak and he was in constant pain from the mets in his spine. He was badly anaemic and was taken off all other treatments for the start of his chemo, he was given 2 units of blood 2 days before his first 70% normal dose of docetaxel chemo. He took steroids for a few days either side of his chemo and at the first session he also had a high dose antiobiotic infusion. We were in the chemo suite at our hospital for about 5 hours altogether and had a very thorough briefing from his lovely chemo nurse.

Prior to chemo Mick had been given MST (morphine tablets) but they made him sick so he was given several different pain meds with varying results until the Macmillan pain management nurse decided he should have Fentanyl patches. These worked brilliantly.

We saw a real iprovement after the first 2 cycles of chemo Mick began to walk without his sticks and even managed to drive our car for the first time in ages.

His PSA was erratic some times it went up others it came down but it never came down below his start point of 545 the main thng is that he felt the best he had since diagnosis and that continued through almost 6 months of chemo (7 cycles with a 5 week break for Xmas and the New Year after cycle 4) We had some difficulties controlling his blood sugar levels (he was a diabetic as well) but they were quickly and very successfully resolved.

During that 6 months we had several long weekends away and met up with our crazy Newark gang a couple of times socially as well. We had visitors all the time, Mick was sometimes a bit tired but generally well and happy.

What you are doing to support him is wonderful you are a fabulous loving daughter just like Mick's

keep posting and let us know how you are all getting along

xxx

Mo

Hi All,

Pre-assessment tomorrow for chemotherapy.  Dad has been out and about today to the barbers, the shops and the bank, there has been no stopping him.  However, he has noticed that the left hand side of his stomach is more swollen that the right, it feels harder on the left, but it is not sore and there is no pain. Hopefully this can be sorted whatever it turns out to be.  We will mention at the lymphedema clinic in the morning and then to pre-assessment in the afternoon.

Jo x

Thank you so much Soren

Jo x

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

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

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

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

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

Thank you Fiona. x

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

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

xx

Mo

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

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)!!