Hi all,
For anyone who is interested, I will keep this thread updated from time to time regarding my stem cell transplant. I'm not sure if you have read a thread from the UK on a stem cell transplant before, but I thought it may be of some interest – especially as I have found everyone at The Beacon a great help and have learnt so much through others who have spent their time advising me.
Just briefly, I was diagnosed in April of this year, Stage 3. Our NHS system was brilliant and saved my life; I was in a bad way with kidney problems, etc. After 3 rounds of induction treatment, I was in complete remission (CR), but my team wanted to give me still a further 3 more rounds of chemo to hit it hard.
Now is my stem cell transplant with the possibility of a allogeneic transplant after. Some of you may have read my thread about a possible allogeneic transplant. I was thankful to all who here at The Beacon took their time to advise me. I don't know my team's decision regarding the allo until I get through my stem cell transplant first, then I will be informed.
At the moment, trying to get my head around the stem cell transplant is hard enough. Even though I'm young, I have always got side effects from most drugs, so I know my body well, and I'm mentally expecting the stem cell transplant to be tough with side effects etc. I so hope I'm wrong.
I won't be posting too much on my bad days, but hopefully if I'm up to it, I will post on some good days. Let's see how I go.
I've got a feeling this could be the longest thread on the Beacon. This is the reason why:
Tuesday, 8th November, booked in for my stem cell transplant. Sent home, no beds available.
Wednesday, the 9th November, sent home, no beds available. I have been warned this could go on up to 3 weeks just to get a bed. Let's see what happens tomorrow.
Good luck to Chad Snow, who is going through his transplant at the same time. Got a feeling, mate, you will be all over and done with and I will still be waiting for a bed . Ha ha.
Regards, Dean
Forums
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
Thank you, Dean, for volunteering to share your stem cell transplant experience with members of the Beacon community. We hope the transplant experience is a smooth one for you and your family.
For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
For others reading this who may be new to the Beacon forum, you should know that there are many other forum threads like this one, describing the stem cell transplant experiences of other Beacon community members. There is a list of these "transplant journal" threads at the end of this Beacon forum posting:
"Useful links to existing forum discussions"
in the section labeled
"Stem Cell Transplant Experiences of Beacon Forum Members"
Note that this "Useful links" posting is always listed as the first discussion thread in the "Treatments & Side Effects" section of the forum.
There also is a link to the "Useful links" posting in the sidebar that appears on every page of the forum. It's the last link in the part of the sidebar titled "Forum Discussions - View By Specific Subject".
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean,
We have recently moved from the UK to the USA and though my sister with myeloma lives in Russia, I still have a soft spot for the UK and the NHS (oh, I do miss 'free at the point of delivery' system!) I also worked in the NHS when we lived in England.
I hope you get a bed soon and that your transplant and subsequent recovery go well. Please keep us posted!
We have recently moved from the UK to the USA and though my sister with myeloma lives in Russia, I still have a soft spot for the UK and the NHS (oh, I do miss 'free at the point of delivery' system!) I also worked in the NHS when we lived in England.
I hope you get a bed soon and that your transplant and subsequent recovery go well. Please keep us posted!
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Dean's Stem Cell Transplant (London, England)
Thanks Gala.
I so hope your sister is doing well. Yes in the UK we do have a great health system and we take for granted that it's all free. Just a shame our system is under such pressure. Hence why I'm still hanging around at home. Still no bed.
Regards,
Dean
I so hope your sister is doing well. Yes in the UK we do have a great health system and we take for granted that it's all free. Just a shame our system is under such pressure. Hence why I'm still hanging around at home. Still no bed.
Regards,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean,
Thank you for your good wishes. I hope this week you will get a bed and will be on track with your treatment. Sending wishes of positivity and good health!
Thank you for your good wishes. I hope this week you will get a bed and will be on track with your treatment. Sending wishes of positivity and good health!
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
Re: Dean's Stem Cell Transplant (London, England)
One week on and I'm still waiting to get a bed.
Not knowing is the hard bit. Let's see what happens this week. Each day I miss is a day closer to not feeling great over Christmas with my daughters. Let's see what happens this week. I just need to crack on.
Dean
Not knowing is the hard bit. Let's see what happens this week. Each day I miss is a day closer to not feeling great over Christmas with my daughters. Let's see what happens this week. I just need to crack on.
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean.
Here's hoping you get your bed soon. I have also been told there is a delay for me, as the unit at my hospital is also full. So I'm in the same boat as you.
Hang in there. I believe God has a plan for each of us and though we don't see or understand it now, we must trust him daily. I can see His hand in my treatment and the timing of everything. For example I was at a point in the first stage of treatment where I was able to travel to UK to be with my daughter and her husband for the birth of my first grandchild. What a blessing. And I will hopefully be over the worst of the transplant by the time my son and his wife have their first child, my second grandchild, here in South Africa.
The best Christmas present you can give your daughters is that you will be around for many more Christmases.
Here's hoping you get your bed soon. I have also been told there is a delay for me, as the unit at my hospital is also full. So I'm in the same boat as you.
Hang in there. I believe God has a plan for each of us and though we don't see or understand it now, we must trust him daily. I can see His hand in my treatment and the timing of everything. For example I was at a point in the first stage of treatment where I was able to travel to UK to be with my daughter and her husband for the birth of my first grandchild. What a blessing. And I will hopefully be over the worst of the transplant by the time my son and his wife have their first child, my second grandchild, here in South Africa.
The best Christmas present you can give your daughters is that you will be around for many more Christmases.
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Barbara SA - Name: Barbara SA
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: November 2015
- Age at diagnosis: 55
Re: Dean's Stem Cell Transplant (London, England)
Thank you Barbara.
I'm still waiting for a bed. It's been over two weeks. Each day I have to wait for the phone to ring. The bed manager can call me up to 7 p.m. each day, and if a bed is available, I have to go that night. It's a nightmare, the waiting.
All the best of luck with your stem cell transplant. Let me know how you are getting on and hopefully you have a bed now. The joys. All the best,
Dean
I'm still waiting for a bed. It's been over two weeks. Each day I have to wait for the phone to ring. The bed manager can call me up to 7 p.m. each day, and if a bed is available, I have to go that night. It's a nightmare, the waiting.
All the best of luck with your stem cell transplant. Let me know how you are getting on and hopefully you have a bed now. The joys. All the best,
Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
After two weeks of waiting, I have a bed for this evening.
Tomorrow I will receive the high-dose chemo and 24 hours later been I will receive my own stem cells back.
Now the fun and games start. This is the part I'm not looking forward to, but it needs to be done.
Good luck to Chadsnow, who also is doing his stem cell transplant.
Tomorrow I will receive the high-dose chemo and 24 hours later been I will receive my own stem cells back.
Now the fun and games start. This is the part I'm not looking forward to, but it needs to be done.
Good luck to Chadsnow, who also is doing his stem cell transplant.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean,
So happy that you finally have got a bed. It must have been a nightmare waiting. My sister actually relapsed waiting for a bed, so this is no joke. I wish you to get through it with the least amount of pain possible and, most importantly, to achieve a lasting remission. Will be following your progress. Sending hugs.
So happy that you finally have got a bed. It must have been a nightmare waiting. My sister actually relapsed waiting for a bed, so this is no joke. I wish you to get through it with the least amount of pain possible and, most importantly, to achieve a lasting remission. Will be following your progress. Sending hugs.
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Gala - Name: Gala
- Who do you know with myeloma?: sister, LgA-k
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 48
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