Day +40
The rash did turn out to be mild GVHD but at this stage they are not worried. It isnt sore or itchy but the cream is sticky and thats worse than the rash.
His ciclosporin levels have been upped to 100mg twice a day. The upside is that its now only 2 tablets even if they are larger. We are waiting for the results of the 1st post trans BMB. Bloods continue to improve and Neutrophils are now well in the normal range.:D Gem |
Sorry to hear about the GVHD but glad it is mild. Hopefully it goes away soon. Glad to hear things are going well.
Laura |
Day +50
Well the rollercoaster continues! The increase in Cyclosporin heralded a nausea and vomiting week. Also he was very sleepy. Then it was upped by 25mg to 125mg twice a day to give a level of 150-200. After having an odd tingling sensation in his hand and head he was readmitted for scans, bloods and lumbar puncture. The good news is that the GVHD has subsided.
So far the results of the tests have shown no real problems and he will be coming off the Ciclosporin. Gem |
Ugh I remember the tingly hands when I was on Cyclosporin- and feet and hands so sensitive it hurt to walk barefoot on carpet. Nasty stuff! I was so glad when I came off it, I instantly felt more Me.
Good to hear the nausea week was only a phase. Lumbar punctures are not fun! |
Sorry for all the troubles. And thanks for keeping us updated. Thinking of you.
Laura |
Day 69
The last few weeks have seen Nicks Ciclosporin upped, and the side effects caused him to be readmitted. All tests proved negative for virus, infection and neurological problems. The levels were then dropped a lot, and another drug, Mycophenelate, added. After a team meeting the Ciclosporin was put at minimum of 50mg per day and some other drugs were left out too. He felt much better for it, but the skin GVHD surfaced again, but mildly on legs and arms. So up with the dreaded Ciclosporin again to 100mg.
The best news was that the 1 month BMB showed 100% donor. He has had the 2 month BMB and is waiting for results. Neutrophils are now normal, platelets range from 100-140 and haemoglobin around 9 which is still a bit low but causing no problems. The hickman line was removed this morning, GVHD has subsided and The dreaded Ciclosporin is being reduced again. So things are improving! |
Does anyone know any reasons for painful joints/ muscles that could be related to drugs or transplant?
Nicks skin is super sensitive at the moment but that seems normal following GVHD and ciclosporin. He mentioned at clinic but no one had an answer. He is still on 50mg per day ciclosporin. |
Have they tested the magnesium levels?
|
Thanks
I will ring and ask for the results from Mondays test. The magnesium levels are tested weekly at the moment. |
Day +90
Well, transplant wise things are progressing well. Counts have stabilised and the skin GVHD has almost gone. The consultant said he likes to see a tiny bit, and the few spots on Nicks foot are good.
Nick has had another odd episode and a readmittance to Kings. After many scans and tests it was shown to have been a TIA or mini stroke. The Consultant thinks that isnt transplant related but an unlucky coincidence. He now has Warfarin for 3 months, and yet more clinic visits with a different doctor. Would be nice to have a period without any extra medical involvement. Gem |
I wish I could give you lots of good news, but sadly not. Nick has had some weakness in his right leg since the TIA episode, but over the last 10 days has developed some rt arm weakness. He was admitted on Thurs for a CT scan, which showed 'something new'. A MRI with contrast agent has confirmed the appearances are probably a virus, JC virus or PML virus, which is destroying areas in his brain and causing his symptoms. They are going to try to fight it, but he has some cGVHD which is not fully under control and he will have to come off the cyclosporin so that may well become an issue. It all seems so unfair after all he has achieved so far. The transplant itself was successful and blood levels and BMB all good.
Wish us luck for this next horrible time ahead. Gem |
Prayers sent your way...
Gem,
I've read all posts of Nick's progress. Sorry to learn of the most recent situation. You're right, seems so unfair. The fight's not over, and you are a wondeful and loving caregiver. I will keep you and Nick in my prayers, and I hope that the doctors are able to fight this viral attack on this body. Hugs, Cindy |
Gem,
Sorry about Nick's setback - how discouraging it must be to have the transplant go so well and now be faced with this viral infection. Hopefully, the doctors will be able to get the virus knocked out soon, now that they know the source of Nick's problems. Do not give up hope! The MDS road is filled with many bumps and ruts but there are still smooth patches in between and hopefully, a long smooth stretch on the horizon. |
Gem
Wishing you all the best luck and yes it does seem unfair, please know that we are here to listen.
Hugs, Debbie |
Does anyone have any information about PML? I realise its quite a rare complication. It doesnt seem to have any treatment except withdrawing all immunosupression, steroids etc. They have ruled out other nicer viruses
Lets hope for the best..... Gem |
Hi Gem,
Here's the wikipedia link in case you haven't checked there already: http://en.wikipedia.org/wiki/Progres...athy#Treatment It looks like the treatments are experimental but they're worth checking with your doctors. Best of luck to both you and Nick. Hugs, Karen |
Quote:
I have been reading your profile and your bone marrow transplant experience. I am due to have a transplant 21 years after being diagnosed. I am due to go to Kings in London , i was refered there from Barts Hospital . I do have a choice of hospitals Barts or Kings, but after reading your experience i think i have made up my mind to go to Kings. Any advise you could give me would be great!!! I must admit im very anxious .. Take Care . Paul |
Gem
Just reading around the net withdrawing immunosuppressants is the standard treatment. They have made some headway with HIV infected patients who contracted PML, not sure if they are looking at some variation for transplant patients.
http://en.wikipedia.org/wiki/Antiretroviral_drug Hoping for the best. Hugs, Debbie |
Thanks for all your wishes. Nick has had immunosuppressants withdrawn now, and whilst the skin GVHD is still present it isnt significantly worse. The PML hasnt really changed much either, which is good. He still has similar sypmtoms to a stroke, with Rt side weakness.
I couldnt find very much info on the internet about the disease, and most referred to AIDS patients. I saw that in the info that comes with Neoral ciclosporin it mentions PML as a side effect! Paul, I would def go to Kings for a transplant. Despite the problems we are facing, it really seems to be a good unit and a very good experienced team. |
Gem - thanks for the update. I've been thinking about him!
|
Just a quick update.
We are back at home now, because there is no further treatment available for progressive multifocal neuropathy(PML), that has been shown to work. The mighty team from Kings has been discussing his case and involving all the other top specialists in virology, neurology, neurosurgery dermatology etc. And a few other consultants as well. He is surprising them a bit because his speech and movement are slowly improving, but classic PML tends to deteriorate. We can only hope he continues to confound. Gem |
JC virus
Hi starz,
Perhaps his own immune system can fight the virus now when he got new effective stem cells and all other drugs that can decrease virus fighting capacity like steriods and the other immunosuppressants for GVHD are withdrawn? Kind regards Birgitta-A |
Hi Gem.
Thanks for the update. I have no doubt that you have been in the best hands possible at King's, and if there was something the team could do, they'd have done it. Maybe Nick just needs the comforts of home to get a rest and allow his body to get fighting fit and overcome this. I'll be thinking about you both. melissa |
Nearly 6 months on...
Well, the latest update is that he must be fighting the PML. His aim was to get downstairs for Christmas and he has achieved that, and with relatively few problems. There is still a very long way to go. but he makes small improvements every day still. We have carers provided 3 times a day, but the midday one is becoming less necessary as his skin needs less cGVHD cream.
He is getting more frustrated because he cant do things, like making a cup of tea when he wants. At least its all in the right direction still. Gem |
Gem that's fantastic news! I can understand how frustrating it must be for him - I was stuck in bed for 9 days recently and it drove me crazy, so 6 months must be really, really hard for him. But he's clearly a fighter and doing so much better than any of the doctors expected! I'm really amazed that he was able to come down for Christmas once he put his mind to it!
I wish you both a Happy Christmas and New Year! |
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