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  #26  
Old Mon Aug 9, 2010, 08:57 AM
starz starz is offline
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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.
Gem
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #27  
Old Mon Aug 9, 2010, 12:49 PM
Laura Laura is offline
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Sorry to hear about the GVHD but glad it is mild. Hopefully it goes away soon. Glad to hear things are going well.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #28  
Old Thu Aug 19, 2010, 03:30 PM
starz starz is offline
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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
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #29  
Old Thu Aug 19, 2010, 05:31 PM
squirrellypoo squirrellypoo is offline
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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!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #30  
Old Fri Aug 20, 2010, 06:24 PM
Laura Laura is offline
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Sorry for all the troubles. And thanks for keeping us updated. Thinking of you.

Laura
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Laura; dx SAA; MUD transplant June 18, 09; ITP June, 2011; fighting multiple complications/GVHD and now low counts again...
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  #31  
Old Tue Sep 7, 2010, 09:53 AM
starz starz is offline
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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!
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #32  
Old Wed Sep 15, 2010, 03:15 PM
starz starz is offline
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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.
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #33  
Old Thu Sep 16, 2010, 05:06 AM
Chirley Chirley is offline
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Have they tested the magnesium levels?
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
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  #34  
Old Thu Sep 16, 2010, 01:47 PM
starz starz is offline
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Thanks
I will ring and ask for the results from Mondays test. The magnesium levels are tested weekly at the moment.
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #35  
Old Tue Sep 28, 2010, 06:01 AM
starz starz is offline
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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
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #36  
Old Sat Oct 23, 2010, 12:42 PM
starz starz is offline
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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
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #37  
Old Sat Oct 23, 2010, 03:19 PM
launch launch is offline
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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
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Cindy, wife of Ron 66 dx w/MDS(RARS)Feb'09,Vidaza 13mons. BMB 2/10 -5q/increased blasts. Watch/wait May-Jul10. Revlimid Jul-Aug10:A-Fib. BMB Aug18, 12%blasts. MDS to AML. Induction completed 9/21/10. BMB Oct10:CR. Consolidaton:10/25/10. Dacogen Dec27-29. SCT on Hold. Fevers/Nt sweats Jan11.
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  #38  
Old Sat Oct 23, 2010, 09:00 PM
mausmish mausmish is offline
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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.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com

Last edited by mausmish : Sun Oct 24, 2010 at 10:47 AM. Reason: Typo correction
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  #39  
Old Wed Oct 27, 2010, 08:29 PM
Debbie W Debbie W is offline
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Gem

Wishing you all the best luck and yes it does seem unfair, please know that we are here to listen.

Hugs,
Debbie
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #40  
Old Sat Oct 30, 2010, 05:27 PM
starz starz is offline
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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
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #41  
Old Sat Oct 30, 2010, 06:31 PM
mausmish mausmish is offline
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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
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #42  
Old Sun Oct 31, 2010, 04:11 PM
PJ1972 PJ1972 is offline
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Quote:
Originally Posted by squirrellypoo View Post
Hi Starz, and welcome!

It's nice to see another Londoner, and one at King's, too!! I had my transplant there almost exactly a year ago, and a RIC MUD, too! The nurses, doctors, and support staff at the DMU (and Davidson) are just utterly FANTASTIC. I cannot say enough good things about them. And the facilities there are really nice, too, with the new lcd tv/dvds and the nice wifi. The only bad thing was the food, but that wasn't the poor food service workers' fault (they were really nice).

If he's having problems with nausea, please, please speak to the nurses about it. They've seen everything, and have a solution for absolutely everything. They always told me to "never suffer in silence". I'd be wary of bringing anything in from outside without consulting with them first. Besides any interactions, everything you bring in could potentially have germs on it, too. My mom even opened up my post for me so I wouldn't touch the envelopes!
Hi There , My name is Paul and i am new to this site.
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
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  #43  
Old Tue Nov 2, 2010, 12:27 AM
Debbie W Debbie W is offline
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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
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #44  
Old Tue Nov 2, 2010, 06:24 AM
starz starz is offline
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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.
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #45  
Old Tue Nov 2, 2010, 10:19 AM
squirrellypoo squirrellypoo is offline
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Gem - thanks for the update. I've been thinking about him!
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #46  
Old Sun Nov 28, 2010, 06:19 PM
starz starz is offline
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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
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #47  
Old Mon Nov 29, 2010, 08:03 AM
Birgitta-A Birgitta-A is offline
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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
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  #48  
Old Mon Nov 29, 2010, 12:17 PM
squirrellypoo squirrellypoo is offline
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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
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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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  #49  
Old Tue Dec 28, 2010, 05:18 PM
starz starz is offline
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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
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Gem, wife of Nick (57), dx CMML Dec 2007. Treated with 7 cycles Azacytidine. Transplant 30/6 RIC MUD.
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  #50  
Old Wed Dec 29, 2010, 11:51 AM
squirrellypoo squirrellypoo is offline
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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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36/F - 1984 SAA treated with ATG [complete remission until] Oct 08 - burst blood vessels in eyes and low platelets; Jan 09 - AA & hypo-MDS; July 09 - BMT (RIC MUD PSCT) July 10 - 10k for Anthony Nolan (1yr post BMT! 53:48) Sep 10 - Wedding! I've run 5 marathons now!! (PB 3:30!)
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