Bowel cancer treatment and side effects

Jane39

5FU Pump running slow - any tips ?

My 5 fu pump has mostly never finished within the prescribed 46 hours . It’s been on for 24 hours now and is so slow . My team are aware but wonder if anyone has learnt any tricks or tips with position etc . The line is not twisted , the white valve has constant skin contact . My PICC line is fine and flushes easily . How much do people have left ? Thank you

scruffysheep

My hospital also trains partners/ friends to remove the 5fu pumps. The first cycle we had to go back so hubby could be talked through the process and the next 10 he did at home. I only went back fir the last to be disconnected because they were taking my picc line out at the same time.
It would have driven me mad having to wait for a district nurse (who possibly didn't know what she/he was doing) to come round to do it.

Polly 1

How are you now @Jane39 ? How did the last few days compare with previous cycles?

C has had a few naps but nothing like the usual fatigue. No tummy problems either. He reckons his skin hasnt been quite so bad, and definately not as painful, but still very red and sore. He finishes his short 5 day course of Doxycycline tomorrow but not sure if it has helped or not.

Jane39

Hi @Polly 1 . Good to hear hubby feels slightly better especially with his skin .
I’ve had no skin rash / dryness or pustules yet .... had the usual red glowing face from chemo and steroids . Have had tummy spasms but not quite as bad and fatigue is less .

I am taking doxy continuously again as advised . We all get such different opinions from our oncologists?

Hope you both have a good day :x:

Polly 1

It's really strange @Jane39 for the first 11 treatments he didn't really have a problem with his skin. Then he had a 5 week break for possible surgery. After that its been quite bad.
This time very red but not quite as painful as previous cycles. He's had a nap or two most days but no major fatigue. No tummy spasms either so I presume that was 'evil Irene' aka Irinotecan. He feels much better in himself just fed up of his sore bits! Hopefully will calm down tomorrow.

Jane39

@Polly 1 . Poor C . That looks so painful and sore . I had similar ( but no where near as bad!) after cycle 12 , but was on holiday and thought the sun exposure and factor 50 creams were the cause . No wonder he is fed up . Do any creams help ? Will they not let him try continuous antibiotics? My oncologist was telling me about the research and results show the benefits are significant with antibiotics. Before I had a break off them after 6 months I was managing an alternative day
Doxy ... just thinking of everything as that looks so painful 😣

Jane39

Hi @Polly 1 . How is C doing with his cycle ? Hope his skin hasn’t been to painful . :x:

Polly 1

Hi @Jane39.

His skin quickly calmed down after my last post thank goodness. His face still remains pink but everything is so much better than it was. No mouth ulcers or any other problems so together with the reduced fatigue much better thank you. As the weather got cooler it helped as well.

He is due his next chemo on Wednesday. He is going to have a 2 week break at the beginning of September so he can get a dental crown sorted.

How are you getting on? Is it chemo day for you tomorrow? :x::x:

Jane39

Hi @Polly 1 .
Im so pleased to hear that . C face looked so painful . Also good that overall things were better for him .

I started with a small skin reaction to face and chest on day 11 but it's minimal. Overall I think things are better without Irinotecan. Mostly struggled with the steroid crash day 4 -5 and tummy issues from day 5-9 ( but not as bad as it has been) .

I had treatment today - a day early but only because of capacity at the unit . Back to my normal Tuesday’s after that :x::x:

Polly 1

Glad to hear all went OK @Jane39 and hope this cycle is the same - are you still having Dexys tablets as well as IV?
Our chemo unit always say they can extend a cycle by a day but can never shorten it - it's funny how each unit has different 'rules'.
You say you got a small skin reaction on day 11 - was it all normal before then?

Jane39

@Polly 1 . Thanks . Yes , I have Dexy tablets ( no IV) on treatment day and then it’s been reduced to 2 more days . I’m seeing consultant next week so will
ask to reduce more . But I may reduce or not take tomorrow’s dose ( naught me !).

Skin had almost completely got back to normal after the 4 week break and the signs crept in at end of the new regime.... little face and chest rash and finger tip cracks . No dryness or sore nail beds . Hair not so dry and brittle. The break has definitely helped . Don’t forget though , I’ve been put back on continuous Doxy and it was when I stopped it that my skin definitely got worse ( was on it for 6 months followed by a 2 month break).
:x::x:

Jane39

@Polly 1 . Hi . How is your hubby getting on with his skin and side effects . I saw my consultant yesterday and he was happy for me to do the next cycle with no Dexamethasone! Hoping it helps and I’m not sick ! :x::x::x:

Polly 1

Hi @Jane39 pleased you can try with no Dexys - C dosnt miss it at all. He just has some IV with Piriton before the Cetux. He didnt feel sick at all. It does seem strange not having any tablets to take while he is attached to his 5FU pump but he feels fine.
This cycle had been very good so far his face has still been very red but not so painful just a prickly feeling
Hope all goes well without the Dexys :x::x:

Polly 1

How is it going @Jane39 are you still not taking the dexys? Hope all is well :x::x:

Jane39

Hi @Polly 1 . Third cycle witout the Dexys. I feel so much better not having that awful steroid crash and fatigue at day 4 / 5 ( after Dexys finish). No sickness or nausea - so win win ! Pump went really good this cycle and completely emptied in 49 hours ! Didn’t go anything different but kept as straight as possible 😂. Disconnected myself too !!!! Finally got oncology nurses to agree after support from my consultant. Is C going for his Hickman today ? :x::x:

Lirio345

Yeahh @Jane39, so pleased to read that you are finally allowed to disconnect your pump as well! It is so liberating 🙂. When disconnecting mine last night, and for the first time in 18 months I watched in slow motion as two glass vials of hepsal rolled on the floor and broke! Luckily I always ensure I have plenty spare, take very good care, Kim :x:

Polly 1

Glad to hear all is still going well @Jane39
Sorry I cant remember have you got a picc or portacath or something else? It must be great to be able to deal with it yourself.
C is having his pump disconnected at the chemo unit this afternoon so they can remove his picc line. He is due to get his Hickman line put in next Wednesday ready for chemo the following Wednesday all being well.

Jane39

Hi @Liriodendron345 . Thanks . I just didn’t see the problem as I’ve managed central lines all my nursing career and my oncologist was happy . I informed the chemo nurses that I would be doing it 😉. I have great district nurses on stand by if needed. I feel that I can have more freedom and go away even when I’m chemo -great ! Hi @Polly 1 . I have a PICC . Did C have his line out .... hope his skin will improve quickly for him . Hope his Hickman insertion goes well . Have a good weekend all :x::x:

Lirio345

Yes that is what was so puzzling @Jane39, - with all of your experience ...... anyway, you are now empowered! Take very good care, Kim :x::x:

Lirio345

Maybe a slight exaggeration @Jane39! I did ask for training after I read about the more remote communities in USA and Australia which are more difficult for Community Nurses to cover, so maybe you are right 😀😀😀. Kim :x::x:

Polly 1

Yes all went OK with the line removal @Jane39 thank you. It was C's 4th removal and he was fine although even though I tried to look away apparantly I went very pale and the chemo nurse was worried about me 😕