Hi all

Wonder if anyone can suggest anything to help..... my dad was dx dec 2004, he is stage 4 with mets to liver and lung. He was on 12 cycles of Oxiplatin and 5fu, then 6 months break then Capecitabine & Irinotecan which hasn't worked. :( .. he is starting Cetuximab & Ironotecan in 2 weeks. He has a very sore bottom! :blob_fire and the skin on his hands and feet are very cracked and dry and causing him some discomfort. Has anyone experienced this and if so can recommend anything?

Thanks in advance, hope everyone is doing well x

PS does anyone know or have any opinions on AHCC?

Hi,

I am sorry for your dad's diagnosis...wishing you all the best.

I would ask your dad's doc about something in the way of a prescription for the sore bum. There is a hydrocortisone cream and foam I used during radiation that helped some. Also try Aquaphor (over the counter) for some "ahhh" relief.

Good luck and God Bless,
Cats

Hi fannyann

Husband also took oxaliplatin and as a precaution used a petroleum jelly based hand cream which worked cos his hands seemed fine (helped by the fact he was off work and not doing the washing up !!!!! :jester: )
Also when he had his radiotherapy, he was advised to avoid most types of shampoo/soaps/shower jels and used an over the counter acqueous cream (probably the generic thing that gocats was talking about), and a simple soap. The cream worked really well and he kept it in the fridge so that when he used it on his behind and "trouser department" where it was burnt it was nice and cooling. He still uses the cream to this day after showering. The cream works well on the toilet tissue for easy wiping too.

My mum took exolada (?? spelling). the side effects for her were too bad along with her other medical condtions. One of the worse effects was on her hands and feet where she developed some large and many small blood blisters. This was put down to a combination of poor circulation and also factor 8 deficiency. She also used the acqueous cream when her hands cracked and dried up. It sounds really terrible but she said it didnt hurt and it soon cleared up after she stopped taking the chemo.

I dont know what AHCC is.

Hope this helps. Good luck.
ktee

Thanks guys, I will get him some and see how that goes........hopefully it will work for him as well.........

Apparently AHCC is a food supplement taken from mushrooms...... supposed to be very good at boosting the immune system to help your body fight this monster and to help against the side effects of chemo........The Chinese are using it in trials to treat cancer patients without standard treatments....think they have had quite a good result so far from what I have read....

Thanks again!

Hi Ruth 6:11 Can you tell me what medication your brother in law has been taking please? My dad is stage IV with mets to liver and lung, his CEA was 600 went down to 81 then went back up to 130 in one week..... seems the second lot of chemo they were using was not working. He is now starting another chemo including monoclonal antibodies next week....... Thanks Fannyann
Hi Fanny, I wanted to move my answer over to one of your own threads so you would be sure to see it...
My brother-in-law is part of a Clinical Trial ID-NCT00129870 (L 9444) with 523 patients in the U.S.
He is getting:
bevacizumab "beva"
Leucovorin
& Oxaliplatin
with Magnesium & Calcium
they load his pump with 5-FU which takes about 2 days to infuse.

The clinical trial part of it as I understand it is that after 4 months they Discontinue the Oxaliplatin w/magnesium & Calcium for 4 months.
They continue the other chemos, and then add the Oxaliplatin w/m&c back in again in 4 months.

I don't know if I mentioned this, but my brother in law has always been a quiet, unassuming guy for the 31 years he's been a part of our family.
But.
With this, I have found out that you can't take the Marine out of him. He got his battle call and his mental attitute is so winning that they really do have him talk to other people with Stage IV who may be helped by seeing how well he is doing.

You and your Dad continue in my prayers,
Ruth
:angel:

I was on a clinical trial with Cetuximab (it is approved for certain types of cancer, but not mine), and my hands and feet were okay, i just got a *horrible* rash on my face. Keep eveything moisturized as much as possible. As for the dry hands and feet, that sounds like hand/foot syndrome, which is a side effect for the chemo i'm on now-- xeloda. Make sure he tells his doctor he's showing symptoms, as they may be able to adjust the dose to make the symptoms less severe. Make sure he doesn't let his hands get too hot- wash with lukewarm water, don't do repetitive motions that may cause friction and moisturize a million times a day.

For my bum, my doctor reccomended aquaphor, which i liked well enough. I used that during radiation, and now I use balmex when I have liquidy bowel movements.

If there's anything I can help with, please pm me

Thanks Ruth, that is very reassuring.....what do they say about you need to watch the quiet ones...they are full of surprises!
The main problem I have with my dad at the moment is depression.... he seems fine one moment then rock bottom the next. My mum died 3 years ago and he lives on his own, I see him twice a week and phone him everyday and my brothers go when they can as well... he is a difficult man to get through to...wont discuss his feelings but he must be petrified..... I think his last appointment knocked him down a lot.... finding out that 2 of the tumours have grown..... I believe a lot is in the delivery from the doc!!! Think she may need some bed side training!...so clinical!

Thanks Cinda, and everyone that has recommended things to help.... I have got the acqueous cream for his hands and some cream called anusol for his backside......(cant seem to get aquaphor in the UK)..... but they are still unopened on the side...he hasn't used them...... this will sound terrible, but my dad has always laid things on a bit thick in the past..... and I truly do not believe he is now, but if it hurts so bad why doesn't he use the creams I have got for him!........... mental exhaustion coming my way me thinks!! :confused:

hi fannyann

did not realise that you are in the UK too. i get husbands cream from the chemist which they make up in pots for him. It is called acqueous cream but you do have to find one that makes it up. It only costs a couple of quid and lasts quite a long time.

hope this helps.
ktee

.........yep, from the UK....I think we are outnumbered though!

I managed to buy a big tub of acqueous cream from the supermarket....cost about £2....but now you mention that your DH has it made up for him maybe I have the wrong thing...... the one I have is an emolient, petroleum jelly based cream....they prescribed it to my late mum when she went through the change...... I take it he uses this on hands feet and bottom?

It sounds like the same sort of thing i think. The one husband has says its "an external skin cleansing agent and an emolient for softening and soothing skin" and is called aqueous cream BP so i guess its also petroluem /paraffin based. Its a 500g tub.

Yes on hands whilst he was on oxaliplatin and also whilst during radiotherapy on bottom and rest of trouser department. Also if encountering diarhea probs where it hurts to wipe in which case he keeps the tub in the fridge and dollops some onto the toilet tissue before wiping. (note: we brits do not keep fridges in our bathrooms, honestly :jester: he just takes the jar to the toilet :D )

good luck
ktee

Sounds exactly the same........ the weird thing is that my dad hasn't had any radiotherapy........ he has only had chemo, up until today when he started monoclonal antibodies and chemo. He says that his bum is really sore and he has some mucous discharge now and then..... he has a stoma bag so there is nothing coming out that is irritating it...however the CT shows that the tumour there has not increased...... strange. When he saw the doc on Friday she examined him and (without detail, but you can guess) relieved some pressure there........ hopefully next lot of treatment will show some improvement......... x

Hi fannyann, I certainly understand the depression & lack of communication part.
You are describing my Dad from the day he was diagnosed at Stage IV until the day he died 5 years ago today...
Depression is absolutely normal given the circumstances - one of the stages that they talk so much about. Some men do better with an anti-depressent or anti-anxiety medication. My brother-in-law is on Paxil and I do think it makes a big difference.

And of course some men (my Dad was one of them) barely acknowledge that they HAVE feelings let alone sit around sharing them. Small wonder that they clam up faced with something this huge happening to them.
It was one of the hardest things for my mother to deal with - that they couldn't talk about so many things that would have helped her emotionally.

But since he couldn't talk about it she had us kids, and you have US - This is the best support group there ever was. I credit it with helping me get my feet on the ground after a year had gone by & I still couldn't deal with the loss of my father...
Hugs,
Ruth
:angel:

Thank you Ruth.... I am very sorry to hear about your dad..... cant wait for the day they find something to beat this monster for good! It is heartbreaking when you lose a parent........especially if it untimely.....my mum was only 52 when she died, and now my dad has this at 60.....
I think what has made things harder is being told one thing by one consultant then another by someone else. Unfortunately he doesn't get to see the same person every time he goes, although he is under the head doc for that department. When he had his first appointment he was told by the doc that he wouldn't die and they would use treatment after treatment until there was something, hopefully, to kill it off...... at that time they knew he was stage 4.....(although we have never been told this, it is just info I have found from the net!) Then at his last appointment he saw a different doc (actually a clinical nurse I believe) who told him the chemo wasn't working and they needed to change it... she said we are just prolonging your life but we haven't given up yet.... this really knocked him down. I suppose what I am getting at is no one has actually told him the situation...... again I only know as I read up alot...(sometimes a dangerous thing!!) This is doing my head in as I do not want to tell him what I have found for fear of knocking him down...and I may be totally wrong, I'm not a doctor..... but at the same time i'm worried that he is waiting around to get better and wasting his life in the meantime..... does that make sense??? He isn't a stupid man, and he knows his own body i'm sure...... but you trust what doctors say don't you..... and its an absolute roller coaster ride for all of us!

Sorry for going on!!! Just needed to vent I think...... makes more sense writing it down sometimes!

Big cuddles x x x

Would you believe that my Dad NEVER asked the doctors what stage cancer he had? He just went along with the treatments that were suggested. They never offered the information to him either.
My Mom finally asked (in those pre-HIPAA days) when my Dad wasn't in the room and they told her quite factually.
So I guess the truth is that doctors won't necessarily use the Stage IV terminal language unless the person asked. I don't know if this is "standard procedure" or not, but so far it seems to be pretty close.
I can't tell you how much my heart goes out to you. You used the word heartbreaking and it fits very well. I treasure each moment with my Mom as much as you do with your Dad.
A big hug,
Ruth
:angel:

Hello all

These situations sound oh so familiar to me. When mum was diag she was quite forthright with the docs to tell her what to expect, so they did tell her. Unfortunately she didnt want to tell us but her surgeon was good enough to take me and my siblings to a private room and explain to us what mum knew, which was that they would try and prolong life (given all her other medical conditions). But the infuriating thing was that, like fannyann said, here in UK you might never see the same consultant again ...... one guy even suggested to mum that she was a candidate for a liver resection even though the liver surgeon had already refused her. It made for some extreme highs and lows.

Husband situation was quite different to mums. I already had the worst details of the stage 4ers given to me by mums surgeon who was also the same surgeon for husband. He had quite a tricky scenario on his hands cos he knew that i knew what he knew ( this is sounding like a pantomime ) but he also knew that husband only wanted to focus on the next treatment or surgery he was having. He did not want to speculate on what might be. Again, there were a couple a times when consultants/registrars gave mixed messages but we stayed ontop of the information and i made sure that they realised we wanted to be in control as much as they did.

My dad passed away over 15 years ago with what i now know was cancer of oesophogus. Our NHS was a different piece of work back then and the nursing care he got was pittiful and I guess they had less ammunition to play with to fight it. As I remember it though it was left up to his GP to tell him and dad never did directly tell us the truth as he knew it. I was the only one in the family that he actually confided in to say that "the doctor thinks it might be cancer" and i was too confused/naive/scared to talk to anybody about what he had told me. The docs told mum only a few days before he died (his illness did take him very quickly) when it was evident that she did not know what was happening to him. He was already in hospital and barely conscious. She felt very angry about that towards the doctors for a long time afterwards. I never had the heart to ask her why she simply didnt just ask what was wrong with him earlier.

Hmmmm...... a trip down memory lane ...... and another ramble.

regards to all
ktee

Sounds like our dads are related Ruth!!! I suppose as I said before, you know your own body....... whats the point in having it clarified??
He went for his new treatment monday, and although he whinged about being up there 6 hours...and being chatted up by a lady who as he described " was nice, but had a few sarnies missing"!..... he seemed in better spirits, and said he felt different.... different isn't bad I suppose....

It is a nightmare Ktee, one doctor saying one thing and the other saying something totally different, I think I will put my trust in the "boss" at least he is the more positive one! and the others seem to go to him to confirm the next step...They have not mentioned surgery at all so I guess it is a total no go.....My brother mentioned that it may be a possibility in the future, but as I cannot be there for every appointment....I dont know how much is exact.....

You have had a ride with this Intrusive germ haven't you Ktee...... hope things will just improve and improve for you........