After effects from treatment for chemo and radio

Hi Nicky I am getting minor tinnitus which is of little  concern at the minute. I suppose time will tell how this pans out Thanks for the response , All the Best Regards Min  

MarkEL said:

There’s not really much about this treatment that is nice is there, other than it’s meant to make us well again!

That’s so true. My oncologist told me he was going to really fry the back of my throat  and that the cancer would take a year out of my life but that he would cure me He did; it did and he did fix me. 

Hi min all I have now at 31 month is dry mouth at night. I tend to have a 20 mjn power nap on day after lunch but if we’re out and about I power in through. Am up around 0830 bed after 2300 every night. Food wise some meats are a challenge but am still seeing improvements so that give hope. Alcohol for me I wasn’t a drinker before at at mjn mouth doesn’t tolerate even a sip of wine. Apart from that  I can easily walk 6-8  miles as and  cycle upwards of 60 km when I bike. 

Hi Min,

I’m just over 6 months post treatment. Like some of the previous comments I’ve had some dizzy spells and also head butted the bedroom door in the middle of the night on the way to the loo, so now I sit for a moment then get up slowly. Interestingly when I mentioned this to my GP she asked me to monitor my B/P twice a day for 7 days. I’ve been taking B/P tablets for the last 20 years, but following these readings and a further monitoring period she has reduced my B/P tablets from 10mg, down to 7.5mg and now I’m on 5mg. I no longer have dizzy spells during the day, it’s only when getting up in the middle of the night.

I now have what I can only describe as electric shock type sensations when I bend my head towards my chest. It’s painless but the shocks are felt in my upper legs and feet and last a split second. This has been diagnosed as the classic symptoms of L’hermittes and can be caused by radiotherapy. There are a couple of other people on this forum who also have it. People with MS suffer with it. Apparently there is no cause for concern and it will disappear in time. 

My dry mouth is improving and I only need a couple of sips of water during the night. I use Oralieve dry mouth relief regularly during the day, always carry one with me and there’s always one in the car. I didn’t get on with Xylimelts nor chewing gum but others have found this helpful. My taste buds are returning, but certain foods I loved I find I no longer get on with or they taste totally different now.  I probably eat about 70% of what I used to (I’ve gone from an overweight 84.6kgs size 18 on day 1 of treatment to 68.9 kgs). I’ve been told by the ENT consultant that I need to put some weight back on. We always drank wine with our evening meal and I wasn’t adverse to a G&T or two, but I now can’t tolerate alcohol and stopped last June and I think a lot of my weight loss is due to giving up alcohol.  As I eat my dinner whilst I can initially taste it, this taste does gradually decrease as I consume more on the plate or towards the end it does become quite dry or un-chewable. However this is also now getting easier and for some strange reason I use a lot of vinegar in my food which the dietician believes gives me a hit of flavour. 

I’ve ended up with Tinnitus but that is now improving. My hair that I lost from the nape of my neck is growing back and what I call my crazy chemo hair on the rest of my head is calming down, it got quite fine, thin and flyaway. I’ve developed Lymphoedema (my turkey gobbler neck) but I’m now seeing a Lymphoedema nurse for that and it is improving. I’m meticulous with my dental hygiene and had them checked in December and I’m seeing the dentist again in 2 weeks. I’ve been prescribed Duraphat toothpaste to use for life and I’ve also been given Fluorigard mouthwash. 

I still worry about every niggle I get but that is becoming less. One thing I have noticed is that I’ve had the most fabulous fingernails since treatment ended, they’ve never looked so good.

Sorry I’ve rambled on a bit, but looking back I now see how far I’ve come. In the first few weeks after treatment when you feel your worst I could never have imagined I’d be where I am today, I feel so well and hopefully this will continue. If the side effects don’t get any better than they are at present, well I can live with that it’s a small price to pay. 

Hopefully this will have helped you in some way Min

Carol x

Hi Carol 

good piece it’s remarkable how our bodies cope and adapt. At 31 month I am still noticing small improvements .

Hazel x

Thanks Hazel, yes it’s amazing how our bodies can recover from the bashing it receives following the treatment. 

Carol x

Hi Carol You sound like you are doing great coping with everything. Its a bit mental that we know we have to take the treatment and deal with the fall out later that no one can predict but we just know there is  a massive list of things that could go wrong . I think we just fix the problem and we will worry about the fallout later . Omg the thoughts that were going through my head were unbelievable as just in serious panic mode . Giving up the booze can only do you good even if its only for a while . I think I can safely say I am in the worse pain now I have ever felt since this started and I have had , one long morphine and 2 teaspoons or oramorph and throat is still sore even have the difflam spray. I might have to have the xylocaine which makes my throat really weird , sorry going to sign off ALL the Best Regards Min 

Hi Dani Yes he told you the way it was and didn't mince his words All the Best Regards Min 

Hi Mark EL

Oh those unpredictable bowels not a topic that we like to talk about too much. Unfortunately those unpredictable bowels are a long term side effect for me. Much worse when I was on morphine and strong pain killers, now as a result of diet and not enough fibre because of my eating issue related to my operation. I have to take daily Metamucil which is a high fibre drink to keep things moving and that will be a long term thing for me. It’s not much of a chore though to keep things ticking along.

 I expect when you are able to tolerate more fibre the issue will resolve. Those darn vegetables, can’t live without them.

Lyn

Thanks  Rhondda you have just enlightened me as I get these sudden jerky movements which I seem to get quite often but they come and go . Just off to research that name All the best Regards Min