Hi Dean,
I am glad you are starting to feel better and the rash going. Going home is a milestone. It's great that you will hopefully be home this weekend. I found it scary to be going home in a way but as my white cells were high enough I had to believe my doctor when I voiced these fears/concerns and he told me to "go home and be normal but sensible".
I will even be able to eat some of our usual Christmas dinner dishes. Now that's normal in my book.
Worry now is how I am going to do my Christmas shopping when I must avoid the malls. I suppose I will have to try online shopping.
So all the best for next while and happy Christmas to you and your family.
Forums
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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)
Hi,
Just over a week ago, I was discharged from hospital after my stem cell transplant.
At the moment, my doctors don't seem to be concerned, but every 2 days on average I need to get my platelets topped up. As soon as I do get the top up, within two days, I need another top up. This has been going on now a few weeks.
The doctors said once my immune system gets stronger your platelets will improve. But today my immune system from 1.7 has gone down to 0.5. So now I'm back on injections to try and boost my immune system back up. I feel I can't seem to move forward until my bone marrow gets working again. So today I've been told at this rate, I may need to pop in to hospital on Christmas Day just to keep a watch on my blood levels, which is a shame as I was hoping to escape hospital visits over Christmas. Apart from my blood levels having a mind of there own, I feel fine.
Is it normal to take a few weeks for blood levels to get back to normal?
Regards,
Dean
Just over a week ago, I was discharged from hospital after my stem cell transplant.
At the moment, my doctors don't seem to be concerned, but every 2 days on average I need to get my platelets topped up. As soon as I do get the top up, within two days, I need another top up. This has been going on now a few weeks.
The doctors said once my immune system gets stronger your platelets will improve. But today my immune system from 1.7 has gone down to 0.5. So now I'm back on injections to try and boost my immune system back up. I feel I can't seem to move forward until my bone marrow gets working again. So today I've been told at this rate, I may need to pop in to hospital on Christmas Day just to keep a watch on my blood levels, which is a shame as I was hoping to escape hospital visits over Christmas. Apart from my blood levels having a mind of there own, I feel fine.
Is it normal to take a few weeks for blood levels to get back to normal?
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,
I had my autologous stem cell transplant in June this year and had a stormy time. I failed to engraft until day 22!
On discharge, my platelets were 20. I had platelets given to me every day for 3 weeks. These were HLA matched. Unfortunately, my body just used to eat these up, meaning that after the platelets were infused, my platelet count would go up to 60, the next day they would be down again. After 3 weeks of daily platelets, my platelets went up to 40, so I had platelets every other day. The day I had my Hickman line out, I was told my platelets had risen to 60, so there was no need to carry on with the infusions.
My bloods are still recovering from the auto, last month being the best they have ever been. Unfortunately, after being told I was minimal residual disease (MRD) negative, 4 weeks later I was told I had relapsed. I am now considering an additional autologous transplant followed by an allogeneic. I only got 5 months out of the transplant. I live in the UK too. Glad all went well with your transplant.
Kind regards
I had my autologous stem cell transplant in June this year and had a stormy time. I failed to engraft until day 22!
On discharge, my platelets were 20. I had platelets given to me every day for 3 weeks. These were HLA matched. Unfortunately, my body just used to eat these up, meaning that after the platelets were infused, my platelet count would go up to 60, the next day they would be down again. After 3 weeks of daily platelets, my platelets went up to 40, so I had platelets every other day. The day I had my Hickman line out, I was told my platelets had risen to 60, so there was no need to carry on with the infusions.
My bloods are still recovering from the auto, last month being the best they have ever been. Unfortunately, after being told I was minimal residual disease (MRD) negative, 4 weeks later I was told I had relapsed. I am now considering an additional autologous transplant followed by an allogeneic. I only got 5 months out of the transplant. I live in the UK too. Glad all went well with your transplant.
Kind regards
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SusanTR1964 - Name: Susan
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 8th February 2016
- Age at diagnosis: 51
Re: Dean's Stem Cell Transplant (London, England)
Dean,
I am very happy your transplant has gone well. I hope your immune system will get stronger soon. It's a shame you may have to go to hospital over Christmas, and I hope you still have lovely time with your family during the holiday season.
My sister is also receiving injections to stimulate her immune system because of severe systemic mucositis she is suffering from following her transplant. Hers is now over 1 and they decided to stop stimulating and see if she manages to generate enough leukocytes on her own.
Sending best wishes to you and your family.
Susan,
So sorry you have relapsed so quickly after your transplant. Another auto and then an allo sounds like a big plan. My sister is now recovering from her first auto and she has now made a decision that she is not going to have another transplant, as the first one is being extremely hard on her. So we have to hope that she recovers well and that her myeloma remains stable for a good stretch of time. I do wish you all the best and hope your treatment plan works.
I am very happy your transplant has gone well. I hope your immune system will get stronger soon. It's a shame you may have to go to hospital over Christmas, and I hope you still have lovely time with your family during the holiday season.
My sister is also receiving injections to stimulate her immune system because of severe systemic mucositis she is suffering from following her transplant. Hers is now over 1 and they decided to stop stimulating and see if she manages to generate enough leukocytes on her own.
Sending best wishes to you and your family.
Susan,
So sorry you have relapsed so quickly after your transplant. Another auto and then an allo sounds like a big plan. My sister is now recovering from her first auto and she has now made a decision that she is not going to have another transplant, as the first one is being extremely hard on her. So we have to hope that she recovers well and that her myeloma remains stable for a good stretch of time. I do wish you all the best and hope your treatment plan works.
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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)
Gala,
Thanks and it sounds like your sister is improving, really pleased for you.
Susan,
Thanks for your advice. Sorry to hear your stem cell transplant didn't last long. Good luck with your decision regarding the allo. This is something I will be dealing with next after my transplant once my consultants decide to do mine early. All your info has been a great help.
Thanks and it sounds like your sister is improving, really pleased for you.
Susan,
Thanks for your advice. Sorry to hear your stem cell transplant didn't last long. Good luck with your decision regarding the allo. This is something I will be dealing with next after my transplant once my consultants decide to do mine early. All your info has been a great help.
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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)
Dean,
Glad to hear you made it home for Christmas even with a couple of speed bumps. I told Barbara that I will always feel a special bond with her, you, Tara's husband, and Ashwin, and that the world seems a whole lot smaller when there are people who you are rooting and praying for on so many different continents. Hope your recovery continues and that 2017 brings good health. I'll be in London in the early or late summer - hope to see you then and get that tour.
Glad to hear you made it home for Christmas even with a couple of speed bumps. I told Barbara that I will always feel a special bond with her, you, Tara's husband, and Ashwin, and that the world seems a whole lot smaller when there are people who you are rooting and praying for on so many different continents. Hope your recovery continues and that 2017 brings good health. I'll be in London in the early or late summer - hope to see you then and get that tour.
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chadsnow - Name: Chad Snow
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 19, 2016
- Age at diagnosis: 45
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean,
There is an excellent 2015 post by Multibilly in answer to a similar question about immune system recovery.
According to Multibilly, who is extremely knowledgeable on most multiple myeloma issues. it can take weeks or months for various parts of the immune system to recover. Hence, I would not worry too much. It does seem that you are on the road to a robust recovery. It's just that the road mentioned has dips and turns that tend to be unique to the individual.
Best of luck!
There is an excellent 2015 post by Multibilly in answer to a similar question about immune system recovery.
According to Multibilly, who is extremely knowledgeable on most multiple myeloma issues. it can take weeks or months for various parts of the immune system to recover. Hence, I would not worry too much. It does seem that you are on the road to a robust recovery. It's just that the road mentioned has dips and turns that tend to be unique to the individual.
Best of luck!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Dean's Stem Cell Transplant (London, England)
Thanks for again for your Kyprolis and Darzalex forum thread, Mr Potatohead. It has been a good read.
Today I got my blood test result which has confirmed my bloods are all in normal range. It's taken me around 7 weeks, but I'm pleased I've gotten there. Except for a winter cold I have recently picked up (my wife calls it Man Flu), I feel back to normal self. I also have a full head of hair again, which is a nice feeling.
No more tests now until March the 8th, which is a bone marrow biopsy. Then week after that I get the result, so fingers crossed.
Regards Dean
Today I got my blood test result which has confirmed my bloods are all in normal range. It's taken me around 7 weeks, but I'm pleased I've gotten there. Except for a winter cold I have recently picked up (my wife calls it Man Flu), I feel back to normal self. I also have a full head of hair again, which is a nice feeling.
No more tests now until March the 8th, which is a bone marrow biopsy. Then week after that I get the result, so fingers crossed.
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)
Great to hear, Dean. I am sure your results will be good. In my opinion, CR1 is the best time to use intensive therapy. Just for some positive thoughts, I have mentioned in the past that the wife of a former neighbor of my parents did an autologous transplant for myeloma in CR1 and she has now been in remission for 9 consecutive years with no maintenance. Positive vibes being sent "across the pond" that you have just as great of an outcome as she is experiencing!
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Mark11
Re: Dean's Stem Cell Transplant (London, England)
Thanks for your positive message, Mark 11.
Just in the process now of gearing up towards a mini allo. Ideally my consultant wants to do it with in the next 6 months. So I've decided to go ahead now while in CR1. The only thing which will stop this from going ahead, if I don't get a match. If it happens, I will update the thread on allogeneic transplant.
In the meantime, thanks for your advise on allo transplant, Mark11, as it's given me more knowledge. It has also given me the opportunity to ask the right questions to the doctors to help me make a more informed decision.
Regards, Dean
Just in the process now of gearing up towards a mini allo. Ideally my consultant wants to do it with in the next 6 months. So I've decided to go ahead now while in CR1. The only thing which will stop this from going ahead, if I don't get a match. If it happens, I will update the thread on allogeneic transplant.
In the meantime, thanks for your advise on allo transplant, Mark11, as it's given me more knowledge. It has also given me the opportunity to ask the right questions to the doctors to help me make a more informed decision.
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
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