Bowel cancer treatment and side effects

Cakey68

Capecitabine + Avastine

Hi all,

I was taken off the Capecitabine just before Xmas after three weeks as my hands and feet became swollen and very sore. I was taken off Capecitabine for three weeks and then given an adjusted dose .

Two weeks in and all appears to be well . No sore mouth, hands or feet ( Shouldn't speak too soon!)

@Bear G. I noticed you added a post for Calmurid Pro. Could you tell me where i can get this from as although my hands and feet are back to normal, I have loads of dead skin on my feet.

Keep well

Lee

HH79

Sounds good @Cakey68 thanks for sharing. I just googled on Amazon & got from there. Lots love :x::x:

Cakey68

Thank you Bear G @ HH7(>

@Colin1966

How is your brother getting on with his treatment ?

CD1966

Hi @Cakey68 - I think you might have meant your last query for me. This is an update I wrote last week. I'm going to post it in the Nurse section shortly too, as no one appears to have come across this situation, or the new drug which was mentioned to my brother by his onc. Hopefully your team have got your dose sorted out now and you're feeling better?

"I just thought I would update on my brother after his latest scan results this week, and see if anyone here has experience or suggestions.
He had been on cape+oxy (sadly without Avastin this time as he can't get it funded again) since June, and the oxy was removed in November as his team were concerned about the accumulating side effects. He was off chemo altogether over Xmas to give him a break, for about 3 weeks, I think.
He had been scanned in November and the mets in his lungs (which are very small) were still showing shrinkage, but his hip was still giving problems and the scan wasn't able to conclusively show whether what was there was post radiotherapy calcification or whether there was still any tumour activity left there. I know he was worried as he was getting pain there, and obviously that makes us all worry that it is the cancer again.
He was scanned again last week and they still can't give a definitive answer about the hip. They're still saying it looks like calcification but that there also seems to be some soft tissue activity which could be tumour or could be inflammation as a result of the calcification. I don't understand why they can't do a scan which could give a definitive answer? He had a CT again this time - does anyone think he should be asking for a different one?
The trouble is that although the cape+oxy seems to work on other organs it does not seem to work on his hip/bone area, so that is why he had to have radiotherapy to blast it. We're hoping that, if nothing else, he may be able to have some more radiotherapy on the same area.
Having been off chemo completely for a few weeks, he's also been told that the lung mets show slight growth, which is obviously not what we wanted to hear, so his team are putting the oxy back in as that is what seems to give his cancer a kicking.
And to cap it all, his bowel tumour seemed to have been obliterated by earlier chemo/radiotherapy and has not really shown up on any scans since, until this last one: apparently this showed a "thickening" of the area where the tumour was. Could he have radiotherapy on that area again? This was last treated with that about 2 years ago and it seemed to be successful.
Has anyone else come across a situation like this?
Also as he is KRAS mutant he is limited on what drugs he can received. His onc has mentioned applying for some special funding for a drug called Xilonix, which comes from the US. His onc was apparently involved in the European trials for this. Has anyone come across it?"

Cakey68

HI CD1966,

Yes my last post was for you ... Brain fog ! LOL

I was told at my last scans in November that all my tumours showed signs of growth . I was on chemo prior to this but has to abort after 3 cycles as my platelets kept dropping too low.

The two tiny mets in my left lung, two in my liver grown and some show in the rectum as well as active nodes in my perennial sack .

I was put on Capecitabine & Astatine now as maintenance. I have been told to view this now as a chronic disease. I believe @Bear is on the same treatment.

I have agreed to trials in March to test for the Gene with the Gene test they took at the beginning of this journey . I think this is to see if i am able to take other treatments post gene test .

I will keep you all informed.

I hope your brother keeping high spirits .. I have now come to the conclusion that worrying does not solve anything so i live as much as a normal life as possible . As i said to my Oncon, I am the only person who does not think i have cancer!!

Best wishes

Bear G

Hi @Cakey68
This is indeed the regimen I’ve been on for over 4 years and (fingers crossed) it’s done a great job of keeping things under control.
I see this as a chronic condition too and the treatment as maintenance much the same way as they treat hypertension and diabetes.
The key is getting the balance right do the side effects are manageable - capcitabine dose reductions and good use of Doublebase worked well for me.
Big hugs
Bear
:x::x:

Cakey68

HI @Bear G

Thank you for your post.

My cousin sent me some Neutrobase from Spain which is very good for the skin too .

So for the new regime seems to be side effect free. I have my scans in March so will see if it is all working ..

The nurses tell me good stories and long term survival rates with this maintenance regime so fingers crossed .

Best wishes

Lee

CD1966

Hi @Cakey68 - sounds as if you and my brother have various similarities - I just wish he could get Avastin again as we are convinced that really did help him when he was allowed it the first time around. I'm so pleased to hear you're in good spirits as well. It's so important to try to keep a positive mindset, I think. My brother just likes to try to keep normal. All power to you!

Bear G

Just a bit of practical advice that doesn’t always get passed on regarding capcitabine. If you get some of the common side effects (such as hand and foot syndrome) you should stop taking the tablets for that cycle and let your team know.

This is in the product license (I’ve pasted some of the info below).

I asked my doc about this when I was having problems and said I didn’t want to stop the tablets as it would reduce the effect - he said that side effects like the sore hands almost act as a sign that you’ve got enough drug in and that it’s ok to stop.

I get the feeling that not everyone is told this. Please talk to your doctor or chemo nurse before doing this.

Big hugs
Bear
Xx

This is taken from EMC
www.medicines.org.uk/emc/medicine/28412

STOP taking Capecitabine tablets immediately and contact your doctor if any of these symptoms occur:

Diarrhoea: if you have an increase of 4 or more bowel movements compared to your normal bowel movements each day or any diarrhoea at night.
Vomiting: if you vomit more than once in a 24-hour time period.
Acute renal failure: low urine output or no urine output as a consequence of dehydration.
Nausea: if you lose your appetite, and the amount of food you eat each day is much less than usual.
Stomatitis: if you have pain, redness, swelling or sores in your mouth and/or throat.
Hand-and-foot skin-reaction: if you have pain, swelling, redness or tingling of hands and/or feet
Fever: if you have a temperature of 38°C or greater
Infection: if you experience signs of infection caused by bacteria or virus, or other organisms.

Cakey68

Thank you Bear G .Things seem ok at the moment .. Fingers crossed.

CD1966 - I think i have just thought . Sod it! Iam not going to let it beat me . I am 50 this year and have bought a weight bench and am starting running this week. I was fairly fit before cancer found me nearly 3 years ago.

Apart from very mild nausea some mornings . I am not getting another side effects . I even have a couple of pints every now and then .

I Also started a business LOL ... I am and a surveyor so i can work from home . I know some people will think i am mad but as long as i feel well, i will continue to live in denial.

Best wished

:x:

Bear G

@Cakey68
I set my business up halfway through my folfiri, I was 49!
You go for it!!
:x::x:

Cakey68

:)

Cakey68

Hi All,

Taken back off Capecitabine tablets this time due to low platelets ( 52) so now waiting to see what they have up their sleeve.....still being given Avastine so thats good.

Any ideas if and how i can raise my platelet level ?

@Bear G , What business did you set up?

@CD1966 , Hope your brothers is doing well?

Best wishes

Lee

charly

Hi there @Cakey68
I have also had issues with hand-foot syndrome from Capecitabine and had a 3 week delay between cycle 3 and 4. Now almost finished no5 and all ok so far. My oncologist advised me to soak hands and feet in warm water with sea salt in it - good healing properties. I do this every night for 5 to 10 minutes and then cream them up- my choice of cream is Kiehl’s Ultimate strength hand salve, but everyone seems to have different things that work for them. I haven’t had a dose reduction as the oncologist said I am on a low dose already as I am not very tall and not very heavy. I hope you continue to be well on it. Thank you @Bear G for the info - wasn’t given that before I started - frustrating not to have these things, but glad I’ve found this forum!
Charlotte :x:

Cakey68

Thank you Charlotte,

Did you platelet levels drop as well ?

charly

Hi Lee
They dropped over the course of the first 3 cycles, but still within acceptable parameters and have gone up a bit again after the delay I had. Almost done with cycle 5 - counting each day!
Glad you are able to stay on the Avastine. Can your nurses advise on what to do about the platelets? So frustrating for you - hope it sorts itself out soon.
Cx

CD1966

Hi @Cakey68 - sorry to hear you're having trouble with the Cap tablets - are they taking you off them for good or just for a break? I'm sure someone on here, maybe @Bear G, gave some info a while ago about injections which could deal with low platelets? I hope I haven't imagined that? At least they are still giving you the Avastin while they work out what to do. My brother isn't too bad at the moment - back on the Cap + Oxy, which isn't nice but does seem to work for him. He needs to get rid of the lung spots and for his team to work out whether the 'thickening' in his bowel which showed up in his last scan is anything or not. It's around the place where he had his chemo-radiotherapy on the original tumour, but as usual with him they don't seem sure whether it's anything or not. Likewise in the top of his femur: they can't tell from the scans whether what is showing there is anything nasty or just calcification from the radiotherapy which he had after his hip op. He is just keeping on keeping on! Hope you're not feeling too bad?

Cakey68

HI

Glad yo here your brother is on top of of it.

I feel absolutely fine which confuses the hell our out of me ... I really dont feel ill at all apart from fatigue some of the time ...

Keep week

Cakey68

i have an other blood test tomorrow so should find out more then...................

CD1966

My brother is the same @Cakey68 though does have pain from the site where he had radiotherapy at the top of his femur. This is, they tell him, either calcification or further tumour material growing but they can't tell which (not quite sure why). He is now starting his 4th year of treatment so it's just a matter of keeping going and finding any other treatment(s) which work. Good luck with your blood tests - keep me updated!