Late effects and problems

Great idea moomy..... and ((hugs)) to your lass.

My second Allo SCT was on 21st October 2015.

Over the past 4 winters I have been back in hospital 5 times (31 days) with Chest Infections, Lung Fungal Infections, RSV Virus, Pneumonia x2, Sepsis x2, A Fib and three months of low blood counts caused by GvHD so regular blood transfusions every second week and GvHD of the skin....... but these issues have all been effectively controlled and I have only had I/G's once post the RSV Virus.

I have no functioning Spleen and will be open for infections for a long time but with 4 under 7 year old granddaughters around the house it looks as though my baby immune system is holding its own. 

The main issues I am still fighting are muscle wastage in my legs and arms, nerve damage where my neck growth was and some Peripheral Neuropathy in my hands. 

I have found that regular exercise can help a lot. So we do walk as much as we can, keep active around the garden and I go to a circuits class once a week at my local Maggie's Centre where we are supported by a cancer trained fitness instructor. I know that the class makes a difference as during the times when the class is not on I can see the difference in my mobility and pain levels.

Keep your eyes fixed on the greater good in all this.

Daughter is now in the local hospital having antibiotics I/V, they took it pretty seriously! Just hope it helps her not to feel so unwell quickly. 

she too finds problems after her long years of treatment, (2004- present) and although still only just into her 40’s she still finds she needs to take time out from work every so often as she does tire now and then, sometimes completely inexplicably. We find we sometimes need to point this out to her! She’s quite thankful when she realises this, that she has never been given a permanent orchestral position, thinks it would be too much (and not particularly well paid either!) 

about exercise, yes, she uses her lungs as much as an athlete and now they have a dog, regular walks are definitely on the list! Her peripheral neuropathy (feet and fingers though now not quite as severe) results in cramps every so often, really debilitating (and her blood work is absolutely fine) which can really only be helped by heat. They are always worse and more often when she’s tired, too. 

she also of course has the worry of possibility of breast cancer occurrence, partly due to radiotherapy exposure but also due to a very early menopause, needing HRT to protect bones and heart. Yesterday she was due a MRI with contrast rather than a mammogram (they are trying to avoid too much radiation!) but inexplicably burst into tears when they eventually found a vein and so it had to be rescheduled. A long phone chat helped her to see it as the result of all she’s been through over the years. 

Hugs xxx

Ah moomy, she has had a rough journey but she is an amazing example of perseverance on the SCT Rollercoaster.

I often think I am off it then it just starts to move again - just to remind me that the ride is not over yet and I do not like rollercoasters at the best of times but this one I did not choose to be on.

It's great that you have an open communication as this make such a difference when it comes to the times when you feel like you are stuck or sinking in a muddy Scottish bog ;) 

((hugs)) all round.

I am nearly two years on from allo for AML.  In my first year I had two e-coli infections but only one needed hospital treatment. My immune system (measured by CD4) is still only three quarters of where it should be. I had kidney damage due to chemo which tends to give borderline normal results - last blood test showed abnormal. Not sure what I can do about that except drink even more water. 

Because I have been trying to eat a 'safe' diet especially when out, I have tended to err on side of hot snacks rather than salads. But now I have gained weight and my cholesterol is too high. So I have to weigh risk of bacteria + infection versus cholesterol + stroke. 

My stamina has improved in the last few months, though I find I can do too much and then take a few days to recover. Sometimes I think I am using my illness as an excuse to avoid things I don't want to do - but it is necessary to manage my energy and keep some in reserve.

We have a new partner at my GP surgery and she asked me to go in and discuss how things were going. It was very refreshing to have a proactive approach and not wait until something has gone wrong. 

Tessa

That’s good, Tessa, sometimes new GP’s or a change of GP practise (as happened for daughter) makes them fascinated in the whole history. I guess not many GP’s see allo patients in their run of the mill surgeries!

had a text back from daughter, their small hospital is very efficient, (small, a bit of a ‘cottage hospital,  no A&E) and the staff are super friendly, she says, her CRP (measure of infection) was pretty raised as was her temp but all other bloods were ok and chest X-ray was clear though she had crackles when the doc listened, so she had I/V antibiotics (Doxycycline) and sent home with that antibiotic too, and to return if she didn’t feel much better within 24-48 hours. That’s excellent service. She said she already felt hungry so had a decent meal and back to bed. Her housemate is on the case too, and looking after her, texting me to say please don’t worry, bless! 

Hugs xxx

Latest news is of some improvement, a big dinner (always a good sign when she can eat!) and she’s lying on the sofa cuddling the puppy! 

Doxycycline must have been a good choice! 

Hugs xxx

Great idea for a thread, moomy!   Posting in a 'Late Effects' thread is like being moved up to Big School!

So pleased to hear that your daughter is doing ok after her recent bout of infection. 

I am now 18 months post-Allo.  

I have been completely off all immuno-suppression since mid-March, following  a year on steroids for acute gut gvhd.  CD4 count at last test (February) was 0.11, which is miles below any semblance of normality.  It is due to be re-tested at the end of May (next week), where I hope to see some great improvement at last! 

It is a surprise to me that I haven't really caught any infections or viruses at all in 18 months, apart from a bout of gall bladder infection that put me in hospital for a week on IV antibiotics - and that could have happened without the transplant. 

I have had some kind of reaction in my joints for the past month, which has been quite debilitating.  Knees and hips are worse, but there is also pain and stiffness in hands, feet and shoulders.  I am waiting to see what that is about!  I have been in purdah for 18 months and was just starting to think I might be able to return to exercise classes soon, but I can hardly walk, let alone dance! 

I eat a wide range of things now, though would still avoid buffets and shellfish.  I would not eat green salad or unpeeled fruit away from my home, where it is home-grown and then washed and rinsed very carefully.  I know that nothing here has been picked by workers with e-coli on their fingertips!  I love salad, so have investigated recipes  involving peeled vegetables as an alternative.  Mary Berry's beetroot and carrot slaw is really good and it also is good with celeriac as an alternative to the beetroot. Low cholesterol too, Tessa! :)  I would eat a lot more of it, except husband is not  a great vegetable dish lover. 

I get a veg box delivered roughly fortnightly from Boxxfresh.  Fabulous quality veg grown locally and considerably cheaper than buying the same from e.g. Waitrose.  They only deliver in Hampshire, but it might be a company that would interest you, Tessa? 

I have dared to go out to a pub with friends.  I always ring in advance, explain the situation and get them to reserve me a table away from the Great Unwashed.  I take wipes to clean the table and cutlery and only choose 'safe' hot meals from the menu. We only go at times we know it is unlikely to be busy - so rural pubs, lunch-time, mid-week.  But it's good to be out! 

Hugs to all. xxx

"Big School"

"The great unwashed"

I just love this 

I aim for 10,000 steps a day but my realistic average is 4,000 to 5,000 per day.

LOL!  I should have said "The Great Unwashed and Anti-Vaccers"!    There's a worryingly large increase in measles in Chichester - all arising from unvaccinated uni students.  Those not vaccinated because of the scare some years back are now just of the age to be off to university and spreading the lurve.

It's my hobby horse!  It infuriates me and my GP in equal measures! :) 

We paid for our four granddaughters to have the chickenpox vacations done as these are not standard for children.

Yes, I do think there may well be a ticking time bomb sitting out in our community’s due to “Anti-Vaccers” 

We may all need to get badges made saying

“Anti-Vaccers keep clear”

With a  on it - lol