Dean,
So glad to see you officially are locked down for transplant. Ironically, you waited so long and thankfully got a bed/room, and yet probably in about 14-16 days, you'll be considering every possible escape route out of said bed!
My husband did his inpatient as well, but he was glad he did that versus outpatient. The nursing team could respond to the slightest concern or discomfort, he had gentle nagging from the occupational and physical therapists getting him up and about constantly, and frankly felt pretty good being the "young" guy on the transplant floor. He did wind up with a sore throat, even after sucking on ice and popsicles, but the medicated mouthwash helped a lot.
I am sure your daughters would like nothing more for Christmas and birthdays than a healthy daddy who feels better. Think of this year as a "scheduling conflict," but there will be so much to celebrate when you are recovering and in the holidays to come. It is well worth the temporary inconvenience!
Forums
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texgal79 - Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 43
Re: Dean's Stem Cell Transplant (London, England)
Chad - Keep us updated. Fingers crossed you get through with no problems.
Tara - Thanks for the kind words. I hope your husband gets through the last part ok. Keep us updated. This must be very hard on our wives. You're doing a great job, I don't know how my wife is holding it all together but after the transplant it's one to tick off and hopefully feel a lot better.
Texgal79 - Thanks for your kind message. So pleased your husband is doing well.. You can now look forward to a great Christmas.
Well, just a quick update.
I had my high-dose chemo yesterday and had half my stem cells put back in today. Then the other half go back in tomorrow. Except for feeling sick and not fancying food, I'm ok. Every sickness tablet the nurses have been offering, I've been taking. Been warned things will get hard soon.
I have just had a sneaky look through my medical file. It says this:
Disease markers before transplant are: CR, paraprotein undetectable, light chains: kappa 15.56, lambda 4.56 mg/l, ratio 3.41.
I understand what CR means, but any tips regarding the rest would be a great help to me.
Regards,
Dean
Tara - Thanks for the kind words. I hope your husband gets through the last part ok. Keep us updated. This must be very hard on our wives. You're doing a great job, I don't know how my wife is holding it all together but after the transplant it's one to tick off and hopefully feel a lot better.
Texgal79 - Thanks for your kind message. So pleased your husband is doing well.. You can now look forward to a great Christmas.
Well, just a quick update.
I had my high-dose chemo yesterday and had half my stem cells put back in today. Then the other half go back in tomorrow. Except for feeling sick and not fancying food, I'm ok. Every sickness tablet the nurses have been offering, I've been taking. Been warned things will get hard soon.
I have just had a sneaky look through my medical file. It says this:
Disease markers before transplant are: CR, paraprotein undetectable, light chains: kappa 15.56, lambda 4.56 mg/l, ratio 3.41.
I understand what CR means, but any tips regarding the rest would be a great help to me.
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,
Glad to hear things are going well.
Sounds like you must have responded very well to induction given your M-spike went from 5.3 g/dL to being undetectable.
I don't know what your serum free light chain values were before your induction. A normal kappa value range is 3.3 - 19.4 mg/l and a normal lambda range is 5.7 - 26.3 mg/L and normal k/l ratio is 0.26 - 1.64 . So your kappa value is in the normal range and your lambda is just a tad low and your free light chain ratio is just a little high. This combination of numbers "might" indicate that you have a little bit of bone marrow suppression going on, which is a common side effect of many induction agents including Revlimid and Velcade.
All in all, it sounds like you are heading into the transplant with little or no disease burden, which is great news. Good luck with the next steps.
Glad to hear things are going well.
Sounds like you must have responded very well to induction given your M-spike went from 5.3 g/dL to being undetectable.
I don't know what your serum free light chain values were before your induction. A normal kappa value range is 3.3 - 19.4 mg/l and a normal lambda range is 5.7 - 26.3 mg/L and normal k/l ratio is 0.26 - 1.64 . So your kappa value is in the normal range and your lambda is just a tad low and your free light chain ratio is just a little high. This combination of numbers "might" indicate that you have a little bit of bone marrow suppression going on, which is a common side effect of many induction agents including Revlimid and Velcade.
All in all, it sounds like you are heading into the transplant with little or no disease burden, which is great news. Good luck with the next steps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dean's Stem Cell Transplant (London, England)
Multibilly,
Thanks, I've learnt a lot about this disease thanks to your postings and others, but I can never get my head around the ranges, etc. My induction treatment was CVD; I think in the States it's called CyBorD. So yes, I did use Velcade.
Does bone marrow depression improve, or is it just something you have to put up with?
Regards,
Dean
Thanks, I've learnt a lot about this disease thanks to your postings and others, but I can never get my head around the ranges, etc. My induction treatment was CVD; I think in the States it's called CyBorD. So yes, I did use Velcade.
Does bone marrow depression improve, or is it just something you have to put up with?
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)
Dean,
As I understand it, bone marrow suppression (myelosuppression) can usually resolve itself once a patient is off the offending drug or the offending drug dose is dialed back to a level where the bone marrow can recover. The development of myelosuppression is one of the arguments against long-term maintenance and one of the reasons some folks are pulled off of maintenance. But all myeloma drug treatments always seem to involve making tradeoffs (toxicity and side effects versus keeping the disease at bay).
Doctors keep an eye out for myelosupression by monitoring one's leukocyte, erythrocyte and thrombocyte levels. In your case, I want to be clear that your free light chain numbers look pretty darn amazing given where you started and that your bone marrow function is probably doing just great, or your doctors wouldn't be sending you into a transplant. It's only that a normal kappa + low lambda + high ratio can indirectly suggest myelosuppression, but all of your free light numbers are very close to being in the normal range.
Again, you seem to be headed into your transplant with a very enviable response to your induction treatment.
As I understand it, bone marrow suppression (myelosuppression) can usually resolve itself once a patient is off the offending drug or the offending drug dose is dialed back to a level where the bone marrow can recover. The development of myelosuppression is one of the arguments against long-term maintenance and one of the reasons some folks are pulled off of maintenance. But all myeloma drug treatments always seem to involve making tradeoffs (toxicity and side effects versus keeping the disease at bay).
Doctors keep an eye out for myelosupression by monitoring one's leukocyte, erythrocyte and thrombocyte levels. In your case, I want to be clear that your free light chain numbers look pretty darn amazing given where you started and that your bone marrow function is probably doing just great, or your doctors wouldn't be sending you into a transplant. It's only that a normal kappa + low lambda + high ratio can indirectly suggest myelosuppression, but all of your free light numbers are very close to being in the normal range.
Again, you seem to be headed into your transplant with a very enviable response to your induction treatment.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean,
Things probably have been tough for you the past few days. I hope you are starting to feel a little better. Good luck!
Things probably have been tough for you the past few days. I hope you are starting to feel a little better. Good luck!
Re: Dean's Stem Cell Transplant (London, England)
Thanks, Multibilly, for the info. And TerryH, yes, you're right.
Just a quick update:
Day 8:
Fortunately so far has not been too bad. The main problem for me is the feeling of sickness all the time. This for me has been tough. All I can try and eat every day is soup. Not been sick yet, but feel like it all the time, where it brings you down. Tried most anti-sickness medicines, so I think I just have to put up with this now.
I have been warned that days 7 to 14 can get worse, when your immune system is wiped out. The problem I'm causing the doctors is that my neutrophils are very slow coming down. When they do drop, the next day they go back up. Two days ago it was reading 3.31.
Anyone have any advice about this? The doctors said it should come down to 0. Maybe this is why I don't feel tired yet.
Will try and update when I'm feeling ok.
Regards,
Dean
Just a quick update:
Day 8:
Fortunately so far has not been too bad. The main problem for me is the feeling of sickness all the time. This for me has been tough. All I can try and eat every day is soup. Not been sick yet, but feel like it all the time, where it brings you down. Tried most anti-sickness medicines, so I think I just have to put up with this now.
I have been warned that days 7 to 14 can get worse, when your immune system is wiped out. The problem I'm causing the doctors is that my neutrophils are very slow coming down. When they do drop, the next day they go back up. Two days ago it was reading 3.31.
Anyone have any advice about this? The doctors said it should come down to 0. Maybe this is why I don't feel tired yet.
Will try and update when I'm feeling ok.
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)
Dean,
That's weird about the neutrophils. Mine got down to zero around Day +7 or +8. I had three pretty yucky days up until around Day 11 and by Day 12 I seriously felt like a new man. Hopefully you're just about to turn the corner.
I know how food doesn't really sound good when your stomach is so upset. I ate some really bizarre stuff only because it was the only thing that sounded good - frozen pizzas, pizza rolls, frozen egg rolls, yogurt and granola. I think I gravitated towards frozen foods because psychologically I thought it had no germs and therefore no risk of getting me sicker!
Hang in there, brother. I'm gonna be taking you up on that black cab ride in 2017!
That's weird about the neutrophils. Mine got down to zero around Day +7 or +8. I had three pretty yucky days up until around Day 11 and by Day 12 I seriously felt like a new man. Hopefully you're just about to turn the corner.
I know how food doesn't really sound good when your stomach is so upset. I ate some really bizarre stuff only because it was the only thing that sounded good - frozen pizzas, pizza rolls, frozen egg rolls, yogurt and granola. I think I gravitated towards frozen foods because psychologically I thought it had no germs and therefore no risk of getting me sicker!
Hang in there, brother. I'm gonna be taking you up on that black cab ride in 2017!
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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)
Sounds like you are doing well Dean. For me, I found "grazing" was the best way to eat. I would just have small snacks throughout the day instead of trying to sit down to a meal. In fact, the few times I got sick it was when I tried to eat a meal and it just didn't settle well.
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Mark Pouley - Name: Mark
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 53
Re: Dean's Stem Cell Transplant (London, England)
Hi Dean,
I found it really stressful when I felt so sickly and folks kept trying to force me to eat! I would not worry that much about eating, just try and take in enough fluids – broths, jello, popsicles, ginger ale, clear drinks – and some snacks as tolerated (crackers, toast, applesauce, etc). When your body is ready, you will be hungry again. Most of us have a few extra pounds to get us through episodes like this. The only food I ate for a while was those really salty cups of instant noodles.
I had an adverse reaction to anti-nausea drugs, so could not take much. My doctors gave me a single dex pill a few days – about Days 7-9 – to help me get through it. If you are not finding help for the nausea, there are different things they can try. Keep asking.
I found it really stressful when I felt so sickly and folks kept trying to force me to eat! I would not worry that much about eating, just try and take in enough fluids – broths, jello, popsicles, ginger ale, clear drinks – and some snacks as tolerated (crackers, toast, applesauce, etc). When your body is ready, you will be hungry again. Most of us have a few extra pounds to get us through episodes like this. The only food I ate for a while was those really salty cups of instant noodles.
I had an adverse reaction to anti-nausea drugs, so could not take much. My doctors gave me a single dex pill a few days – about Days 7-9 – to help me get through it. If you are not finding help for the nausea, there are different things they can try. Keep asking.
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
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