Hi all

                Just a quick note to say that I have relapsed 1 year after my allo SCT. So just a bit peed off and friends and family in bits, and helping each other.

           The resend for posting this hear is that Brentuximab is been look at if they can get it for me or not. But I start the chemo (chIVPP) that got me to the SCT. This is to give me time I hope works agene (hay how off we go the roller coaster of cancer is picking speed).

                Will talk again when I can get my head around this yours Andy

 

Hi Andy I'm so sorry to hear about your relapse, you have been in my thoughts all day. Let us know when you hear back about the Brentuximab. I know it was being accelerated through NICE but I'm not aware of how they access drugs, hoe long it takes or what they base their decisions on - perhaps someone else out there knows? Keep strong and keep talking to us, Gilly J

Hi guys This is a first post tho I've followed the site for a couple years and many of the stories have been inspirational and compelling not to mention heart-breaking and I feel for you Andy after your recent news. As a husband and carer to my wife who has been fighting hodgkin's now for two years I understand the ups and downs that go with it. My wife is currently undergoing an allogeneic SCT having successfully got into a position where she was able to only following treatment with brentuximab. Only 6short months ago we were basically told it was the end of the road treatment wise as progression to the liver meant further chemotherapy would've been too toxic and potentially fatal. She had already endured 6mths of ABVD that left residual disease only picked up following an unscheduled PET scan as a result of parainfluenza 2 delaying progression to radiotherapy, that as it turned out would've destroyed a lung and not have got the residual disease! So we're thankful for these blessings. Further chemotherapy with GemCis got her into remission and allowed progression to an auto SCT with BEAM that was a horrendous experience which she was lucky to come through, but did to be told it didn't work and the disease was back more aggressive than ever. Steroids controlled it temporarily but liver surgery showed it was very advanced and options for palliative care were on the horizon! Our research lead us to Brentuximab, of which our consultant was aware but an application to get onto the compassionate named patient program was getting nowhere till they told us after 2weeks it was closed to new patients as it was originally set up for 200 patients but currently had close to 500 on it and there were not enough supplies of the drug. We did not take no for an answer and spent days contacting Seattle genetics and the Takeda oncology company and Idis Pharma who were responsible for the named patient program in Europe, as well as our politicians and anyone else that could persuade these companies to rethink, and were thanking God when the news came thru that a review of the program had opened up some space where others had dropped off. After only 2doses of brentuximab a PET scan showed CR, absolutely amazing, so we continued with it when my wife was in the best shape she's been in in 2years with no real side effects other than the fatigue which has been constant this 2years and even then nowhere near like the other chemo's. And after 8sessions she is in good shape goin into this allo which, please God, will do the trick for good this time...we'll keep praying this miracle continues, and so far the reduced intensity chemotherapy has been well tolerated, and it has been a completely different experience than the previous SCT and we hope that continues too. I hope this is of some benefit to you and I hope you get access to the brentuximab. Good luck.

Andy, so very sorry to have read that you've relapsed, hope they get Adcetris for you fast, keep posting! X

Badde, our daughter was one of those who had compassionate SGN as it was still known , and she at last got into remission, first time in 7 years ( diagnosed in 2004 ) we had heard that word! She's now 5 months post-allo and according to the consultant is doing fine, her energy levels are still pretty rubbish but improving, the anti rejection drug is now reducing and she is planning at last to be more than a 40 minute drive away from the hospital quite soon! Hope everyone soon has NHS access to this drug, it has done a huge amount for very many people! Keep posting, folk! x

Hi moomy Glad to hear the positive news about your daughter post-allo it brings some hope, though if this whole experience has taught us anything it's that everyone is different! BUt at the same time we learn to take the positives where we can and I'm sure your delighted to be able to come up for air for a bit after 7 no doubt taxing years! So well done to you and your daughter. I only hope we are in a similar position in the month's ahead, you gotta keep the faith Andy, keep pushing and things will happen, the doctors are good but by no means the be all and end all, so if the people around you can work on your behalf in anyway to get access to brentuximab then let them, it's amazed us what good people can achieve when the mind is focussed. Anyways 6days into the allo now and the aletuzimab drug caused a few issues but hopefully they are slowly settling down again. Busulfan tomorrow which my wife is a bit anxious about but hopefully all will go smoothly, we'll see... Take care Badde

Hi again, Badde, daughter had already had so much chemo that they did the allo using Campath, Fludarabine and Melphalan......l hope all goes well for your wife, the Melphalan was pretty nasty, but the whole total wasn't nearly as bad as the BEAM she had for the auto, and her room so much better! Recovery is a lot slower, partly due to the anti- rejection meds. After 6 months they reckon for the new cells to be excellent at graft versus lymphoma effect. That's what we are hoping for right now as she has a couple of teeny nodes come up, but as they are bilaterally identical and it's after tonsillitis, the Doc thinks it is just a reaction to that. She too had Paraflu type 2 but it was 3 weeks after she got home so she was pretty poorly, but got through it with just a few days back in hospital. .........keep posting! X

Hi moomy So day -1 here and chemo finished at last. Things goin alright except for the rough effect of all the drugs on the stomach and the sickiness associated with them all. Bloods starting to dip now and neutropenic so wary of infection. On antibiotics for pneumococcal virus that caused temp spikes early in week tho seems to have settled now and I hope doesn't cause any more problems. Just started on the immunosuppressant cyclosporin horse tablets while also getting iv potassium which seems a contra-indication as all the assoc lit says to watch for potassium od while on them. We'll take that up with Dr's tomorrow. But taking them things for 6months is bound to be hard but whatever it takes I suppose. I had enquired with the Dr's prior to this why Melphalan wasn't used for the allo as all the lit from America on RIC Allo SCT post brentuximab indicated good results using that drug with campath and fludarabine, but they just told me that is what they use here and the busulfan isn't as hard as the Melphalan, which is fair enough given what I seen of it last year with the beam. I just hope it doesn't affect outcome. ANyways we weren't so lucky as you with the room as it's pretty much identical, tiny and drab, but doin our best to brighten it with pics and cards from the children. At least this time I've got a recliner chair too which is a bit easier to sleep on than previously but just glad to be here to help and pass the time, hopefully the weekend will be non eventful ahead of the stem cells on Monday. We'll see how it goes... Take care for now Badde