I just wanted to share that last Thursday I passed the 1000 day mark. It doesn't seem long ago that I was counting towards the 100 day post SCT.
It has been a journey that's for sure but I can now honestly say that I feel over it and life is getting my back to normal. I thought I had some GVHD of the skin as I itched a lot but after my recent trip to sunny Australia I have realised that it isn't GVHD but that I am just sensitive to temperature change. When I am in a warm climate in sunny weather I don't itch at all. I come back to the cold UK and in and out of hot rooms to cold outside and I itch. So I have been reducing my cyclosporine and hope within the next few weeks I will have taken myself off it all together. This in turn will hopefully lead to me coming off my blood pressure pills as this was fine until I started cyclosporine. Then hopefully my immune system will get to the point I can come off the immunoglobulins.. Well that's the plan i have put together in my mind.
Short term I will see if I can get some UVB treatment at local hospital.. Longer term well perhaps if I can stay healthy for a couple more years then it will be time to pack our bags and emigrate down under (my wife is Australian so not such a crazy idea!).
For all of you leading up to a transplant or just gone through one keep positive.. There is most definitely light at the end of the tunnel..
if I could figure out how to post a pic I would of me on day 1000 down at Bondi Beach last week.. A few beers were had by all that day!
Congrats, all milestones are important, who knows a 1000 day countdown to moving to Aus.
Getting off those drugs will be good and I am sure you will feel much better all part of that roller caster ride.
Looking bonza Paul. Good on yer mate! My husband has just celebrated his 2nd re-birthday and we have booked that holiday of a lifetime to Australia and New Zealand. I will know things are returning to a new normal when I can start looking forward to going without the fear that something will happen to stop us.
Interesting to read of your sensitive skin. My husband has bright red skin blotches all over and is suffering from itching. Doctors have ruled out GVHD but think it is psoriasis. Hopefully the warm weather will help with the itching as he is really suffering.
I went through a stage when I looked like I had psoriasis in early 2014. I had sessions in the UVB light booths at the Royal London and after 8 sessions it was gone. The sessions were about 5 seconds each!
Last year when I went to Gran Canaria in October the itching stopped within 12 hours. Same this time in Aus. So I know for sure its not GVHD so will speak to my consultant in a couple of weeks at my next clinic appt and ask for a UVB referral To get me through to the summer.
Maybe ask if your husband can give it a go.. Steroid crmeans etc didn't help but UVB and sunshine fixes it!
such wonderful news for you and thank you for sharing. I am in the waiting game at the mo to see if I even make it to stem cell, thinking I will be lucky to have it Cos that at least means ghe salvage chemo has worked to get me in remission for it.
Anyway good on you, I dream to live in aus! al the very best X
love your news! That is really great to hear! Go, Paul, go! (even to Oz if you need to!)
Just an update on my husbands skin which is getting worse. I asked his consultant about UVB and he is going to refer him to a dermatologist to see if they can help.
For about 15 years my husband had mild psoriasis which attacked his joints giving him psoriatic arthritis. The treatment caused his AML. Post transplant his mobility has improved dramatically and he has become a new man.
Obviously we are concerned at the return of the psoriasis and how bad it is. He is mixed chimerism with 93% donor cells. They wanted to give him a DLI but couldn't get further cells from the donor as he was psychologically traumatised.
The consultant explained that my husbands 7% cells have told the donors 93% that 'we attack the skin in this house'. He says they will have been trained to do it now and a DLI couldn't reverse the bad habits they have been taught.
Ironically if they start attacking the joints again the treatment is the one that caused the AML in the first place, so fingers crossed.
It's my big birthday next week and hubby is taking me away to Dubai so we shall see if the sunshine helps.
really hope Dubai helps him! And you, too of course!
I guess it may show whether UVB will help your husband's skin. I didn't realise psoriasis was linked to AML, cruel.
Moomy it was the treatment that he received for psoriatic arthritis that caused 'therapy related AML'.
Hi, yes, I realised that but my typing didn't make that clear, sorry. It's really unfortunate. Was it medication or light therapy or a combination?
He was on Methotrexate for over 10 years then they added a new drug, just out of trial called Humira. He had monthly blood tests to monitor the Methotrexate. As soon as the Humira was added his WBC dropped and he became neutropenic. We only know this now and it is so apparent looking at the blood book that he had to carry everywhere with him. It appears that the GP and Rheumatologist were only looking at the inflammation aspects of the bloods and completely missed what was happening. He went on Humira September 2012 when his neutrophils were 2.50, the next blood test they were 1.12. By January 2013, his 60th birthday when we went to the Caribbean and we were eating beach barbecues they were 0.86 and in May when we jetted off to Texas they were 0.52. They continued to drop until GP picked it up in July 2013. By then it was too late and Therapy Related AML was diagnosed.
Hope that drug Humira has now been dropped, or if still given, watched carefully?
It's still being given and is a fantastic drug. However it does need monitoring more closely than it was in my husbands case.
The good news is we have fought to raise awareness. Our GPs practice have treated it as a significant event and procedures there and at the rheumatologists have changed. Hopefully others will be spared the hell that we have experienced.
It's a real pity it needs one sadly bad experience to push things forward. And the greater shame when it's your hubby that is that one experience.
Sending you both hugs xxx
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