Bad side effects after 1st and 2nd treatment. Advice please

1 reply
132 subscribers
51 views

Husby is 2nd time around.

1st bowel cancer 2013.

Metastasis has it in adrenal and lung (enough to cause partial collapse).

1st chemo started Tuesday 2nd June. Cetuximab and Irinotecan with 5FU and folinic acid.

Pump came off Thursday 4th. By the 7th PE, clot on the good lung. Now on Apixiban. By Tuesday 9th bad mouth ulcers. Difflam type mouthwash dispensed.

Bloods on 15th followed by consultation. A one week postponement of treatment to resume on a reduced dose.

So 23rd June he's back in the chair. Atropine given before the Irino part. Pump on. Pump off Thursday 25th. Ulcers start up again. Made it over the weekend but it was getting harder for him to use the difflam and take food and drink.

Monday night the diarrhoea kicked in. Tuesday 30th we're back to hospital and he's admitted. Can barely swallow water. Forcing himself to take lukewarm soup, yogurt, soft ice-cream etc. 36 hours IV fluids.

All the mouthwash variants including unlicensed lidocaine hydrochloride and hydrocortisone. (Says so on the sticker)

He's home tonight. Friday 3rd July. Still on soup and jelly and custard. Wants a steak. Home for our 17th wedding anniversary. Yay. Bit of begging to get that.

Thing is we're due for consultation again Monday and we think they want to try the same treatment again. He's not up for it and I don't think he's wrong. The treatment was supposed to give quality of life. Extend a guestimate 18 months to maybe 3 years. He can't go out in the sun. He can't eat solid food. The dietician suggested if no improvement a feeding tube. Hard to see where the quality is.

Before treatment he got breathless but was healthy and physically fit. It was a chest infection that flagged the true problem.

Has anybody out there had anything similar who could give ushooe or advice? We actually think this has reduced life expectancy.

He had oxipilatin for first bowel treatment. And managed it. Does anybody know if that would work on a met to lung?

Looking for hope so I can support better.

Thank you if you made it to the end

Sierraoscar (littlerose)

court 6 hours ago

Hi Sierraoscar

Sorry to hear your husband has such a difficult time just now . Couple of points we found required a lot of consideration . Stage 4 treatments are limited in terms of options . What you need to discuss with your oncologist is what it is classed at if he stops this treatment . Can it be revisited or is it classed as failing that treatment . There is very tight rules around Cetuximab and I would think it might not be abled to be used again . My mum was on it for ten months alone and I have to say it was very tolerable on its own . It did have a lot of side effects but unlike chemo they took a turn then actually receded . They did not accumulate or get worse but actually reduced then a different one popped up . They even can in an order. . She had a few six week breaks . Cetuximab causes a lot of loose bowls and strips the magnesium so she had to get help balancing that out and keeping her magnesium rich foods up . We found dark chocolate and home made granola helped .

The mouth ulcers stopped and I think we used immodium but can’t quite remember. But with the right balance she was able to go out and about . That was just on it alone with no chemo . Again I think there are rules around just using it on its own .

I definitely think he needs a good chat with his team to ask all the rules . Find out all the options and fully understand the implications so he can make an informed decision.
If you want to get ahead of that to prepare for your appointment you could look at the Nice guidelines to see what is recommended or possible .

My mum did well on Oxaliplatin when she was younger but after recurring she had to go to a second line option . However some oncologist seem to be able to repurpose treatments and use them again but I don’t know how they go about that .

It is a difficult balance isn’t it . We had some tricky moments too and it took time to get the balance right . But I can totally understand he wants it to balance out for him so his quality of life is retained .
Thinking of you both .

Court

Helpline Number 0808 808 0000