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Beating Bowel Cancer Community

Bowel cancer treatment and side effects

TraceyJ61

Swollen tongue reaction to flush following Oxiplatin IV

Hi just wondered if anyone else has experienced this?

I started my 8th treatment which has been reduced due to this problem. All is OK while receiving the chemo but as soon as they put the flush in within a few minutes my tongue swells up and I start talking with a lisp. Can breathe ok its just my tongue.f Its happened at every treatment and it goes when I get home and have plenty of hot drinks and my house is warm. Apart from that I managing fine with the treatment and its working. I inform the HODU nurses at begining of treatment and have told my oncologist but they dont seem too concerned just advised I have hot drinks whilst receiving flush which I do but didnt manage yesterday as staff were too busy and there was no hot water on drinks trolley.

Its not just straight after treatment it a couple of weeks ago I had a CT scan fine with dye then 2 days after had MRI and she put a flush through my canula first and my tongue swelled up then but was ok after a short while I was ok with the dye.

Yesterday (busy day due to bank hol) HODU packed out and stressed busy nurses. When I mention about the flush the nurse suggested we didnt do it this time and cleared it with other nurses. By the time I received my flush the shifts had changed so when I informed the nurse about to put the flush on and reasons why the manager was called and I was told I had to have it and I said ok coz It will only last a few hours I will be fine once I get home. They checked my tongue after 10 mins and it was swollen and lumpy so they gave me hydrocortisone and piriton and it immediately went down to normal.

Has anyone else had problems like these?

Baxter2

Gosh that sounds a bit scary for you @TraceyJ61

I have had the reactions to cold following Oxaliplatin but no swelling.

You are right to continue to alert whoever is looking after you of this effect and yes, having a warm drink at the ready sounds a good precaution. Perhaps go armed with a flask?

I would have thought the flush was not the culprit, but more than likely the Oxaliplatin. I note that you also had this after a flush accociated with your ct scan though so it’s not clear what’s causing it to me.

Perhaps @Charlotte Nurse Advisor can offer some input here but she is on A/L at present so there may be a delay in her picking up this thread. When are you due to see your oncologist? It sounds important to discuss with her/him who ultimately authorises your treatment regime.

Hope you’re ok today and inside keeping warm. It’s just started snowing here and I don’t need to even venture out so that’s nice. I just hope my chemo nurse manages to get to me for my pump disconnect today though!

Sending lots of love and hugs,

K 💚💛💜❤️💙

jinnyp

Hi @TraceyJ61, I haven’t had anything as extreme as you but I had my 5th Folfox yesterday and after eating my breakfast cereal this morning my tongue has swelled up a bit and I have a lisp!!
I’ve noticed it before on a cold dog walk but it resolves soon after I am home.
I haven’t mentioned it to the doctors although I have told them that my face goes numb when out sometimes.
Until I read your post I had thought that I might be imagining it 😄
Take care and stay warm! Jane :x:

Bear G

Hi @TraceyJ61
Sorry you’ve had to endure this but you’ve done the right thing alerting your doctors and nurses. I’d suggest taking comfort from the fact they aren’t worried at all and, importantly, that it’s minor and short lived.
Do continue to alert them about it though.
Big hugs
Bear
:x::x:

DianeS

Hi @traceyJ I was also on Folfox and remember having one cycle that really caused my throat to get into difficulty and I was given an oxygen mask for the rest of the cycle. It didn’t happen again after that. I’m glad your team aren’t concerned, and I hope this is something that Is only temporary, Love D :x::x::x::x::x:

TraceyJ61

Thanks @Baxter2 @jinnyp @Bear G and @DianeS for your replies. Unfortunately this has been a problem since cycle 1 which has got worse over each additional cycle so am down to reduced treatment. The hydrocortisone and Piriton intravenously worked like majic though this is the first time they have administered this after treatment. The piriton hit me hard, slept solid for 2 days! only woke to eat and drink. Anyway no more side effects only if I go out in cold and breathe in the air it causes throat spasms/tingly tongue and lisp. I always make sure I have a scarf covering my nose and mouth and If I accidentally end up breathing in cold air just breathe into my scarfe and breathe the warmth back in slowly and my throat eases up which is very quick the main thing is not to panic. I also carry a flask of hot drink with me as well. But all in all other side effects are very mild. Fingers crossed that they dont stop treatment because of this as the chemo is working and I am coping. I have informed everyone oncologists/GP/HODU nurses at every visit of this reaction but until now they havent seemed concerned just puzzled. They have tried giving me the flush at room temperature to see if that made a difference but it didnt.

Baxter2 hope your chemo nurse got through the snow for you ?

Best wishes everyone and thanks again for your comments :x::x:

Baxter2

Hi @TraceyJ61

Glad they’re on to it anyway and like you, if the treatment is working, I hope it can continue!

My nurse did get here through to snow and pump off!

Hope you have a good day!

K 💚💛💜❤️💙

TraceyJ61

@Baxter2 Yeah well done chemo nurse you must feel so much better now it has been removed. Hope you have a good day too :x::x:

eyeofthetiger

Hi @TraceyJ61 I have the swollen lispy tongue thing too when I have the Oxy infusion but it also normally only lasts a few hours and is worse if I get cold. My Onc isnt worried by it either but said if it gets worse then a reduction might be necessary. I have loads of weird side effects, mainly mild neuropathy (evil in cold) eye pain if I cry, eye twitching spasms, cramps, hair loss, diarrhea, acid tummy with eggy burps but all manageable at the moment. The Folfox did such a good job last round that I am trying to continue with the Oxy as long as possible without ending up with any permanent damage. Hope your side effects remain bearable and that you can continue with the Oxy. The thing I struggle with the most is the Dexamethasone as I have high cortisol levels anyway and it gives me mania and dreadful mood swings so after discussing with Onc I haven't taken it this cycle, so not sure what to expect. Best wishes :x::x::x:

TraceyJ61

Hi @eyeofthetiger thanks for that reply. The way the nurses reacted they had me worried as they havent come across it before? even though I tell them every time at start of treatment. But this time when chatting to nurse at end of treatment she witnessed the lispy tongue as normally I am out of the ward straight after flush but this time they were busy and I was there longer so she went running for the hydrocortisone and piriton. The thing is the symptoms only last that evening and into morning and then subsides but they have reduced the last 2 treatments by half because of this but recent scans have shown that chemo is working so hopefully it isnt stopped all together. I get the mild neuropathy too and eye pain when crying (had to cut down on watching anything on TV that makes me emotional so sticking to action films) Am ok with the steriods though they do make me shaky and I have a rough couple of days following taking them with tiredness. Like you I am managing the symptoms and they are worth putting up with if chemo is working. :x::x:

Charlotte Nurse Advisor

Hi @TraceyJ61,

Apologies for the delayed reply to the tag from @Baxter2

I'm not familiar with this sort of reaction to Oxali but it does seem clear that this is a drug reaction. The most important thing is that your team know of this and whilst any drug reaction is worrying it does appear that this is being controlled with the prition and hydrocortisone.

Try not too worry about your team reducing the dose of your chemo, this is something that is commonly done and there is no evidence that reducing a chemo dose to manage side-effects reduces its effectiveness.

Best wishes,

Charlotte

TraceyJ61

Thanks for getting back to me @Charlotte Nurse Advisor thats reassuring to know. I was worried it was the flush as it only happens when they administer that.

TraceyJ61

Just an update on the allergic reaction. Have just had round 9 on half dose of Oxi - they were concerned about the reaction I had last time. Oncologist wanted to stop treatment but HODU nurse wanted to try giving me Hydrocortisone at beginning of treatment and keep a close eye on me during treatment to see if needed piriton at the end which I didnt. :)

Bear G

Fab news @TraceyJ61
:x::x: