Mucositis

Hi SJW58 …… sorry to hear this.

I thankfully managed to keep clear of having a naso-gastric tube as I had no real mucositis problems.

My consultant put this down to their investment in using rather expensive mouth wash called Caphosol.

From talking with others they often say that things improved once the new graft develops and the immune system is able to heal.

Hey Mike, 

Aha no! I haven't had my conditioning treatment yet but the transplant team have signalled to me that mucositis can be a big problem and they tend to fit NG tubes as standard in case it's an issue. Not keen! So was wondering what other people's experiences had been on here.... 

Sorry I read your question wrong….. if you can get them to give you Caphosol, like me, you may well miss the pleasure of the feeding-tube. My team find that they are using these tubes less because of the investment. 

Hi Sarah

I got some Caphasol from the advice on these forums,it may have been Mikes can’t remember ,and I had no Mucositis. However I did decide to have a nasal gastric tube which though a little unpleasant during the fitting wasn’t a problem. I was very poorly after the transplant and ended up in critical care for 8 days so I think it helped my recovery as I was properly nourished during that time. 
Hope all goes well for you x

Mark

Hi Mark, 

Thanks for your message. I’ve just ordered some caphosol and realised I did have it through my previous Chemo. 

I hadn’t considered that there might be other reasons for the NG tube - such as getting very sick - that I should take into consideration as well, so thanks for that. 

i actually had a NJ tube before - all the way to the jejunum as I was very ill - and it did make my throat sore after a while but it also saved my life. 

I hope you are doing well now Mark and your period of poor health wasn’t very long? 

I go into hospital on Sunday. Wish me luck!! 

Thanks again, 

Sarah

Hi again Sarah

I have been very lucky since my transplant, I was only admitted for a week at about 4 months with high temps. It was about a year before I started to feel fairly normal again. There has been bouts of skin problems ,dodgy stomach ,shingles etc but compared to others I count myself blessed. I will be 5 years post transplant in May and apart from the traumatic memories of the early days of diagnosis,chemo,infections etc life is back to normal again.

I will be thinking of you on Sunday x

Hey Mike!

I purchased my caphosol and will ask permission to use it. I have had it before actually. Love the mixing thing. Makes me feel like a scientist. Did your Dr suggest which day to start on it? Any thoughts?

Hoping to be admitted tomorrow.

Thanks for your help!

Sarah

I started it on the first day I started conditioning so day T -11 for my first Allo then day T -7 for my second.

I set alarms on my phone for every 3 to 4 hours  to make sure so used it and for 2-3 mins to make sure I was using it long enough.

Hey Mike!

I just wanted to thank you for your Caphosol recommendation. I followed your advice to the letter.

In the hospital they kept saying to me "When you get mucositis...". They inspected my mouth every day.

I didn't get it!!! Apart from a bad week of vomiting, I was able to eat nornally. (The food was terrible. My husband bought me food in). I only lost 3lbs. So thanks so much for that.

I am home now. The hospital stay was a humbling experience. It's very early days but I feel pretty well. Able to do stuff round the house, go for a walk and do a bit of exercise. I've had a bit of a GVHD skin rash but the steroids have helped.

One day at a time, eh!?

Thanks again for your help Mike. I hope you remain well!

All the best, 

Sarah

Hi again Sarah SJW58 and great that the Caphosol did the trick.

Not many hospitals even know about Caphosol but my unit are convinced that the investment saves money in the long run as people get home quicker and recover quicker.

A day at a time is a good approach.

My consultant also gave me this basic scale for classifying where I was on the recovery journey.

50% = when in the hospital going through the transplant process.

60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.

70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.

80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.

90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.

100% = No physical after effects and able to do multiple tasks including being back to work.

She also said on average the recovery is about 6 months with your recovery improving about 10% per month post SCT