Swollen tongue persisting a month & half after end of chemo!

Thanks for the link to the article Kym & also your comments. I'm glad I'm not the only one that got dumb looks from my oncologist! It certainly adds to the fear. I didn't expect any miracles within the first couple of months after chemo ended but certainly didn't expect this side effect to rear its ugly head again.

I've had a lot of joint aches & some weird nerve feelings throughout my body,  especially the backs of my legs. My nails are pretty crappy too. I lost one big toe nail & the other looks like it might all but fall off. They are growing at the nail bed now so that's a positive.

I have a triple neg cancer so no targeted therapies for me. I haven't heard good things about herceptin from people actually taking it. Glad in a way I don't have to. Karen, I hope you can find ways to get through your herceptin treatment as comfortable as possible & pray there is no further damage to your body.

I appreciate all your support ladies xo

Hi Kym, 

my onc put it this way. We are basically flooding our systems with straight poison so there is no end to the possible side effects. Herceptin made me ill but everyone had told me that it shouldn't do that. Well it did and I have since met others who were in the same boat. The fact is we are all different and stuff happens. Chemo has damaged my vestibular system. I finished treatment 6 months ago but the onc referred me to a physio as I keep losing my balance and have fallen several times. I have been very fortunate that my specialists actually listen to what I have to say and never dismiss what treatment may have done to my system. Good luck. Karen xox

Yes I was thinking dentist too! Maybe a gum infection or tooth problem causing it. Good luck. Karen xox

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4041377/

hi Tracey,

In my bc journey, I would have to say the worst part of it is the side effects but even worse than that is the oncologists dumb looks when it comes to side effects from this drug. 

I found this article which talks about swollen face and tongue. It is an interesting article compiled from many toxicity research studies on patients.

Im experiencing watery eyes, swollen body all over and chest tightness and not one oncologist who thinks its side effects of the drug. It's a wonderful healing drug but the after effects can be long standing.

Im finding, in public anyway there doesn't seem to be a lot of follow up for the after effects.

I hope you get heard soon.

cheers

Kym x

I agree, my dentist gave important and great support. XX Mandy

Thanks Mandy. I already asked the breast care nurses throughout my treatment & they hadn't heard of it either. Its just my tongue. I'm going to see if I can get in with a new GP tomorrow who specialises in treating chronic diseases including cancer. He may have seen this before. I will also go to a dentist.

Thanks for replying ?

Thank you for the suggestion Nadine. Definitely due for a dental appointment so I'm going to prioritise it.

Thank you ? xo

Hi Tracey

You mentioned that the nurses, oncologist and GP are perplexed. perhaps you could consult a dentist? It may be something completely un related to chemo. My dentist is a key player in my treatment team. Dentists are responsible for complete oral health including the tongue and if they don't know they may be able to refer you to an ENT or oral surgeon. Might be worth a try.

I hope it gets better soon. All the best.

Nadine

So sorry to hear of this ailment with your tongue. I will be praying it settles completely and you can start to move forward to full health. Love & smiles to you xxx