Awesome update AC! I have thought of you often and was glad to see your posting last night when I checked. Tthank you for sharing and so glad to see you are finding relief from the mystery rash and itching (your wife too) and that your lab numbers are normalizing. I am truly very happy for you.
I hope your celebration of Day 100 is but the start of the celebration of many future markers with multiple myeloma in check!
John.
Forums
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Pajarito - Name: John
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 16, 2016
- Age at diagnosis: 48
Re: AC's stem cell transplant in South Florida
Congratulations on Day 100, AC! That's certainly a big milestone. It's funny how the time from Day 0 to Day 100 looks infinitely long when you're on one side of it, but pretty short when you're on the other side.
I'm glad the new med is helping the rash/itching. I had bad itching, but no rash, for a week or two right after I got out of the hospital following my stem cell transplant. It put a damper on everything, but fortunately a prescription antihistamine (or time) cleared it up. If I end up being sent to hell, there won't be any fire. Instead, it will be gigantic hives all over my body; that's the worst torture I can imagine.
And thanks for all your work in documenting your transplant experiences.
Best wishes to you!
Mike
I'm glad the new med is helping the rash/itching. I had bad itching, but no rash, for a week or two right after I got out of the hospital following my stem cell transplant. It put a damper on everything, but fortunately a prescription antihistamine (or time) cleared it up. If I end up being sent to hell, there won't be any fire. Instead, it will be gigantic hives all over my body; that's the worst torture I can imagine.
And thanks for all your work in documenting your transplant experiences.
Best wishes to you!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: AC's stem cell transplant in South Florida
AC,
So glad to hear those terrific numbers! Congrats! Maybe you just needed a little bit more time to respond to the transplant, or a little more chemo to ice those devils!
FYI, my daughter and I recently had an itch fest such as the one you described. It looked like scabies, but none could be found. However, finally we were treated for scabies, and voila!
Gone! We also did a lot of laundry and cleaning. Who knows. Maybe it's another type of mite that is too small to see, but is thankfully vulnerable to the same treatment as for scabies.
Have a great next few weeks enjoying the end of summer.
Continued good health to you, and keep us posted on your progress!
Best regards,
Ellen Harris
So glad to hear those terrific numbers! Congrats! Maybe you just needed a little bit more time to respond to the transplant, or a little more chemo to ice those devils!
FYI, my daughter and I recently had an itch fest such as the one you described. It looked like scabies, but none could be found. However, finally we were treated for scabies, and voila!
Gone! We also did a lot of laundry and cleaning. Who knows. Maybe it's another type of mite that is too small to see, but is thankfully vulnerable to the same treatment as for scabies.
Have a great next few weeks enjoying the end of summer.
Continued good health to you, and keep us posted on your progress!
Best regards,
Ellen Harris
Re: AC's stem cell transplant in South Florida
John, Mike, and Ellen,
Thank you for the warm wishes.
I completed my first cycle post-transplant of Revlimid, Velcade, and dexamethasone (RVD) yesterday. I will receive my new kappa light chain numbers on Friday. I now get two weeks off thankfully to let me body recover. I can feel a different pre- and post-transplant with the RVD because now I feel like I am in a sauna for about 24 hours until the Velcade starts to leave my system.
Ellen,
I about fell out of my chair when I read your message (literally). When during your therapy did you have these symptoms. if you had the same symptoms and the same response to the drug, even though they could not verify the scabies, there has to be something to this post-transplant for some patients. I would hate for anybody else to go through 3 months of what I went through with the rash and itch that was about to have me committed somewhere, when there is a drug that will work. I am actually a little upset that the doctors did not give me the meds earlier (back in June). I have been on dex now (4 mg) since mid-June, and I have gained 15 pounds and my face its very round. I hope now that I am off the dex that everything will start going back to normal.
Thank you,
Anthony
Thank you for the warm wishes.
I completed my first cycle post-transplant of Revlimid, Velcade, and dexamethasone (RVD) yesterday. I will receive my new kappa light chain numbers on Friday. I now get two weeks off thankfully to let me body recover. I can feel a different pre- and post-transplant with the RVD because now I feel like I am in a sauna for about 24 hours until the Velcade starts to leave my system.
Ellen,
I about fell out of my chair when I read your message (literally). When during your therapy did you have these symptoms. if you had the same symptoms and the same response to the drug, even though they could not verify the scabies, there has to be something to this post-transplant for some patients. I would hate for anybody else to go through 3 months of what I went through with the rash and itch that was about to have me committed somewhere, when there is a drug that will work. I am actually a little upset that the doctors did not give me the meds earlier (back in June). I have been on dex now (4 mg) since mid-June, and I have gained 15 pounds and my face its very round. I hope now that I am off the dex that everything will start going back to normal.
Thank you,
Anthony
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
I'm glad to hear things are finally going better for you now that the itch has been vanquished. Good luck in your continued recovery.
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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: AC's stem cell transplant in South Florida
I hope every one is having a good weekend. I have a couple of questions regarding how I have been feeling this week.
On Tuesday my myeloma doctor decided to put me back on the dex since my rash and itch was almost gone. Before Tuesday, my doctor has decreased my dex from 4 mg per day.
On Tuesday when I received my Velcade, I took the 40 mg as usual. My doctor decided after Tuesday I would cut out the dex except on the Tuesdays I have my treatment. On Wednesday I didn't feel any different and went along my normal routine. However, on Thursday I felt like I had been run over by a couple or trucks and couldn't even keep my eyes open for an extended period of time.
This persisted on Friday and the same today. During my induction therapy, I never really had a dex crash and was wondering if that is what I am experiencing? I also didn't know if it was caused by my three months of battling the itch and rash where I never slept more than an hour or two during the night and my body is saying since it can sleep, it's time to sleep. I want to be active these past couple of days and especially this weekend, but I can barely open my eyes and get out of bed.
AC
On Tuesday my myeloma doctor decided to put me back on the dex since my rash and itch was almost gone. Before Tuesday, my doctor has decreased my dex from 4 mg per day.
On Tuesday when I received my Velcade, I took the 40 mg as usual. My doctor decided after Tuesday I would cut out the dex except on the Tuesdays I have my treatment. On Wednesday I didn't feel any different and went along my normal routine. However, on Thursday I felt like I had been run over by a couple or trucks and couldn't even keep my eyes open for an extended period of time.
This persisted on Friday and the same today. During my induction therapy, I never really had a dex crash and was wondering if that is what I am experiencing? I also didn't know if it was caused by my three months of battling the itch and rash where I never slept more than an hour or two during the night and my body is saying since it can sleep, it's time to sleep. I want to be active these past couple of days and especially this weekend, but I can barely open my eyes and get out of bed.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Hi AC,
Sorry to hear you've been run over by a couple of trucks. I hope maybe by today you're feeling better.
Speaking from my own experience, I did have what I'd consider to be dex crashes when I was on Revlimid, Velcade, and dexamethasone (RVD) "back in the day." But they would only last one or two days at the most and weren't as severe as what you're describing. Your theory about lack of sleep being tied in with this sounds plausible to me.
Also, I just wonder if you might have some infection. Have you taken your temperature to be sure that's normal?
If you're not feeling more like your old self by Monday, it might be worth calling your doctor to see what s/he thinks.
I hope you're feeling better soon!
Mike
Sorry to hear you've been run over by a couple of trucks. I hope maybe by today you're feeling better.
Speaking from my own experience, I did have what I'd consider to be dex crashes when I was on Revlimid, Velcade, and dexamethasone (RVD) "back in the day." But they would only last one or two days at the most and weren't as severe as what you're describing. Your theory about lack of sleep being tied in with this sounds plausible to me.
Also, I just wonder if you might have some infection. Have you taken your temperature to be sure that's normal?
If you're not feeling more like your old self by Monday, it might be worth calling your doctor to see what s/he thinks.
I hope you're feeling better soon!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: AC's stem cell transplant in South Florida
My experience with dex during induction was that I didn't get the sort of crash people talk about, though I'd be up and then tired and sluggish a few days later. It was noticeable, but not debilitating.
Then, about month 5, I started having what you're describing. I could barely move and remember times when my bladder had to be causing serious pain before I was willing to struggle to the bathroom.
I couldn't assign it to anything specific because nothing had changed - except cumulatively. This continued until I had been off induction for a few weeks, not constant by any means, but would slam into me and not let go for hours, lift a bit, then slam me again.
So very glad to hear the rash torture has abated! It's hard to imagine the implications of not sleeping for more than 1-2 hours night after night, but a numbing crash from it makes sense to this non-doc.
Then, about month 5, I started having what you're describing. I could barely move and remember times when my bladder had to be causing serious pain before I was willing to struggle to the bathroom.
I couldn't assign it to anything specific because nothing had changed - except cumulatively. This continued until I had been off induction for a few weeks, not constant by any means, but would slam into me and not let go for hours, lift a bit, then slam me again.
So very glad to hear the rash torture has abated! It's hard to imagine the implications of not sleeping for more than 1-2 hours night after night, but a numbing crash from it makes sense to this non-doc.
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moonscape - Who do you know with myeloma?: me
- When were you/they diagnosed?: 11/2015
Re: AC's stem cell transplant in South Florida
Thank you for the suggestions. I called the doctor and they took a look at the labs because that is what they were thinking too. All the labs came back ok. I really think it is the cumulative effect, plus the stem cell transplant, plus no sleep, and my body is just worn out. Interestingly, I felt better the two months after the stem cell transplant (June + July) than I did in August and right now.
I've had some difficulty getting lorazepam (Ativan) since I upped the dose, with my doctor's approval, to deal with the itch I had after my transplant. I describe the problem in this separate forum thread that I just started:
"Difficulty getting Ativan (lorazepam) prescription filled"
Hope everyone is enjoying their Labor Day weekend!
I've had some difficulty getting lorazepam (Ativan) since I upped the dose, with my doctor's approval, to deal with the itch I had after my transplant. I describe the problem in this separate forum thread that I just started:
"Difficulty getting Ativan (lorazepam) prescription filled"
Hope everyone is enjoying their Labor Day weekend!
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
I have now been through one round of consolidation therapy and before I took my 2 week break from chemo, my kappa free light chain level was 23 and looking good. I just received my kappa free light chain number from when I started my second cycle of consolidation treatment, and during the two weeks time period, my cancer number jumped from 23 to 70.
Does this bode negatively for me going forward? I take a break from Revlimid, dex, and Velcade, and wham, the numbers jump. This was just like May when I stopped the chemo and had the stem cell transplant and then after the stem cell transplant my numbers went as high as 183.
The chemo brings it down, but any break and it pops right back up. Anybody have any guidance or information that would be helpful to understand what's going on?
AC
Does this bode negatively for me going forward? I take a break from Revlimid, dex, and Velcade, and wham, the numbers jump. This was just like May when I stopped the chemo and had the stem cell transplant and then after the stem cell transplant my numbers went as high as 183.
The chemo brings it down, but any break and it pops right back up. Anybody have any guidance or information that would be helpful to understand what's going on?
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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