I hope your well at the moment. I too have been spoken to about the ‘Allo’, with the possibility of a cure dangled also, however, you are right the stats are a little scary. A friend of mine who is a little older than me at 47 is having his ‘Allo’ at the moment at Christies and although he was rough for a few days initially he’s feels much better at the moment, which, is encouraging. I think the best thing to do is take each step at a time and see what transpires however if I have a reasonable experience with my ‘Auto’ then I’ll probably opt for the ‘Allo’ in future, if, that’s an option at that time.
Anyways, I’m off for now, be well and keep positive and we’ll no doubt chat again soon.
Hi Scott,
Well I hope you’re friend is doing ok after his allo. And you of course..
I’ve been gathering information since I last wrote. It’s a continual process in our situation I suppose!
I went to London last week fir a second opinion on the tandem transplant. My stem cell prof wants be to have my auto, now planned for May, a couple of months recouperation and them the allo. My haematologist doesn’t want me to have the allo. This sent me a little crazy for a while. I’m still getting used to having myeloma let alone making decisions on my life. The prof I saw in London was helpful. She suggested getting through the auto, having a bone marrow biopsy test after a couple of months then this should be able to give them a good idea of how well it’s worked and how lengthy my remission should be expected to be. I think she was the missing piece in my puzzle. I’m trying to chat to a few people who have been through the auto to see how their health is. I’m more scared of being poorly long term than anything else. I want to live my life, not be poorly forever.
You’re right, perhaps opt for the auto in the future if possible and of course if needed!!!
I’m currently fundraising like crazy for myeloma uk. I’ve vowed to keep hoping until a cure if found or I drop dead! ;-))
I’m up to about £15,000 since last September. It’s a drop in the ocean but every penny counts. Hey, if you’re on Facebook and you want to, look up GoTeamFox. That’s my page. I put all sorts of myeloma related stuff on there. I’m no good at writing so didn’t fancy a blog so it’s a way of keeping in touch and educating my team. I have a great support network.
Well, I’d better get going. Hope to speak again soon. I really hope you’re ok and keeping positive.
I am doing really well thanks and I’m approx 7 weeks post Auto Transplant now and feeling great! I was quite lucky with my SCT because I didn’t really struggle at all. I had my High Dose Chemo (Melphalan) and then Stem Cells returned to me 24 hrs later (after plenty of IV fluids) and then was sent home again until my counts started to drop. Approx 5 days later I returned to Hospital and they admitted me when my counts were nearing Zero. Overall I only spent 9 days in Hospital and was allowed home when my Nuetrophils had risen sufficiently. I must admit I did feel occasional nausea, lost my appetite and had a sore tongue for a few days but apart from that was ok. I lost about a 12 pounds in weight (never a bad thing) however have soon gained again since I came home. I was tired initially however after a few weeks that started to subside for me and I got stronger each day.
I have been back at work now for a couple of weeks (phased return) and I have not felt this well for a long time. I have had conversations with my consultant about the tandem RIC allo (Reduced Intensity Conditioning) and I have the option also of a Myeloablative Full Auto which some believe offers the best long term remission and possible cure. If I have the RIC allo I’ll have it approx 4 months after Auto which they said is the optimum time to have it. The regime is not as bad as the Auto initially because it is lower dose chemo however the GVHD can be a problem. My friend has really struggled with GVHD of late and has just come out of Hospital after a month with problems with his gut.
The Myeloablative is very risky I’m told and I am being steered away from that however I’m still undecided. I have heard about people being in Hospital for months after and others who have come through it without many too many problems however its not to be underestimated. As you know everyone’s experience is different and you can never tell how you’ll be after treatment.
I have had a relatively easy experience with my Auto and don’t fear the RIC Allo and apparently have two fully matched donors already…the only thing I have to decide is do I want to gamble everything on a Myeloablative Full Allo in the hope for high reward at the end of it. I’m undecided at the moment however need to make a decision over the next week or so. I’ll let you know what I decide.
Keep up the great work with the fund raising £15K is awesome and you should be really proud!
My advice is to go into the Auto expecting to be really ill and anything else will be a bonus. Be strong of mind and you will be ok.
Hi Emma,
I hope your well at the moment. I too have been spoken to about the ‘Allo’, with the possibility of a cure dangled also, however, you are right the stats are a little scary. A friend of mine who is a little older than me at 47 is having his ‘Allo’ at the moment at Christies and although he was rough for a few days initially he’s feels much better at the moment, which, is encouraging. I think the best thing to do is take each step at a time and see what transpires however if I have a reasonable experience with my ‘Auto’ then I’ll probably opt for the ‘Allo’ in future, if, that’s an option at that time.
Anyways, I’m off for now, be well and keep positive and we’ll no doubt chat again soon.
Cheers
Scott
Hi Scott,
Well I hope you’re friend is doing ok after his allo. And you of course..
I’ve been gathering information since I last wrote. It’s a continual process in our situation I suppose!
I went to London last week fir a second opinion on the tandem transplant. My stem cell prof wants be to have my auto, now planned for May, a couple of months recouperation and them the allo. My haematologist doesn’t want me to have the allo. This sent me a little crazy for a while. I’m still getting used to having myeloma let alone making decisions on my life. The prof I saw in London was helpful. She suggested getting through the auto, having a bone marrow biopsy test after a couple of months then this should be able to give them a good idea of how well it’s worked and how lengthy my remission should be expected to be. I think she was the missing piece in my puzzle. I’m trying to chat to a few people who have been through the auto to see how their health is. I’m more scared of being poorly long term than anything else. I want to live my life, not be poorly forever.
You’re right, perhaps opt for the auto in the future if possible and of course if needed!!!
I’m currently fundraising like crazy for myeloma uk. I’ve vowed to keep hoping until a cure if found or I drop dead! ;-))
I’m up to about £15,000 since last September. It’s a drop in the ocean but every penny counts. Hey, if you’re on Facebook and you want to, look up GoTeamFox. That’s my page. I put all sorts of myeloma related stuff on there. I’m no good at writing so didn’t fancy a blog so it’s a way of keeping in touch and educating my team. I have a great support network.
Well, I’d better get going. Hope to speak again soon. I really hope you’re ok and keeping positive.
Emx
Hi Emma,
I am doing really well thanks and I’m approx 7 weeks post Auto Transplant now and feeling great! I was quite lucky with my SCT because I didn’t really struggle at all. I had my High Dose Chemo (Melphalan) and then Stem Cells returned to me 24 hrs later (after plenty of IV fluids) and then was sent home again until my counts started to drop. Approx 5 days later I returned to Hospital and they admitted me when my counts were nearing Zero. Overall I only spent 9 days in Hospital and was allowed home when my Nuetrophils had risen sufficiently. I must admit I did feel occasional nausea, lost my appetite and had a sore tongue for a few days but apart from that was ok. I lost about a 12 pounds in weight (never a bad thing) however have soon gained again since I came home. I was tired initially however after a few weeks that started to subside for me and I got stronger each day.
I have been back at work now for a couple of weeks (phased return) and I have not felt this well for a long time. I have had conversations with my consultant about the tandem RIC allo (Reduced Intensity Conditioning) and I have the option also of a Myeloablative Full Auto which some believe offers the best long term remission and possible cure. If I have the RIC allo I’ll have it approx 4 months after Auto which they said is the optimum time to have it. The regime is not as bad as the Auto initially because it is lower dose chemo however the GVHD can be a problem. My friend has really struggled with GVHD of late and has just come out of Hospital after a month with problems with his gut.
The Myeloablative is very risky I’m told and I am being steered away from that however I’m still undecided. I have heard about people being in Hospital for months after and others who have come through it without many too many problems however its not to be underestimated. As you know everyone’s experience is different and you can never tell how you’ll be after treatment.
I have had a relatively easy experience with my Auto and don’t fear the RIC Allo and apparently have two fully matched donors already…the only thing I have to decide is do I want to gamble everything on a Myeloablative Full Allo in the hope for high reward at the end of it. I’m undecided at the moment however need to make a decision over the next week or so. I’ll let you know what I decide.
Keep up the great work with the fund raising £15K is awesome and you should be really proud!
My advice is to go into the Auto expecting to be really ill and anything else will be a bonus. Be strong of mind and you will be ok.
Chat Soon 🙂
Scott