Three Infusions
Two at Mayo Clinic, and now the third at a highly-rated local hospital. We have made twelve 200-mile round trips to Mayo in Rochester so far just this year, almost one per week, and I ' m tired of the drive. Of course I ' ll do whatever it takes to stay alive, and Mayo is indeed a world-class center for myeloma treatment, so that sounds like whining. However, if the drive is not necessary, it is certainly more convenient (and safer) to have procedures like blood draws and even infusions done barely a 10-minute drive from home. My current Darzalex (daratumumab) regimen calls for weekly infusions for eigh...
Source: Myeloma Hope - April 24, 2016 Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs
Three Infusions
Two at Mayo Clinic, and now the third at a highly-rated local hospital. We have made twelve 200-mile round trips to Mayo in Rochester so far just this year, almost one per week, and I'm tired of the drive. Of course I'll do whatever it takes to stay alive, and Mayo is indeed a world-class center for myeloma treatment, so that sounds like whining. However, if the drive is not necessary, it is certainly more convenient (and safer) to have procedures like blood draws and even infusions done barely a 10-minute drive from home. My current Darzalex (daratumumab) regimen calls for weekly infusions for eigh...
Source: Myeloma Hope - April 24, 2016 Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs
Pomalyst and Darzalex
Darzalex (daratumumab) is a potent myeloma treatment by itself, buteven more so when combined with Pomalyst (pomalidomide), and that is what my Dr WG wants me to have now. I couldn ' t agree more. Two studies that have benefited other people have failed for me, one after the other, and my IgG and M-Spike have increased. Far worse, my most recent PET/CT shows five lesions in my bones including three scary ones in the spine, so it ' s time to bring out the big guns.
I ' ve been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-rece...
Source: Myeloma Hope - April 7, 2016 Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs
Pomalyst and Darzalex
Darzalex (daratumumab) is a potent myeloma treatment by itself, but even more so when combined with Pomalyst (pomalidomide), and that is what my Dr WG wants me to have now. I couldn't agree more. Two studies that have benefited other people have failed for me, one after the other, and my IgG and M-Spike have increased. Far worse, my most recent PET/CT shows five lesions in my bones including three scary ones in the spine, so it's time to bring out the big guns.
I've been taking Pomalyst again now for a month, 2 mg every day, with dexamethasone (DEX) 40 mg weekly, waiting for the drugs from the most-recen...
Source: Myeloma Hope - April 7, 2016 Category: Cancer & Oncology Tags: Darzalex infusion Source Type: blogs
Better DEX Experience
Three weeks ago Iwhined mightily about taking DEX. The worst problem was acid reflux the second night after taking it, but there were other issues too. I ' m happy to say that I have had better experiences since then.Acid reflux:
Lots of good people offered great suggestions regarding the heartburn (acid reflux). This formula has worked for three weeks in a row. After the worst heartburn of my life, now zero heartburn:I take the 40 mg of DEX with food at the Sunday evening meal, and the reflux happens (happened) Monday night.No food at all in the last few hours before going to bed Monday night. I f...
Source: Myeloma Hope - April 5, 2016 Category: Cancer & Oncology Tags: acid reflux DEX dexamethasone GERD hearatburn Source Type: blogs
Better DEX Experience
Three weeks ago I whined mightily about taking DEX. The worst problem was acid reflux the second night after taking it, but there were other issues too. I'm happy to say that I have had better experiences since then.
Acid reflux:
Lots of good people offered great suggestions regarding the heartburn (acid reflux). This formula has worked for three weeks in a row. After the worst heartburn of my life, now zero heartburn:
I take the 40 mg of DEX with food at the Sunday evening meal, and the reflux happens (happened) Monday night.
No food at all in the last few hours before going to bed Monday night...
Source: Myeloma Hope - April 5, 2016 Category: Cancer & Oncology Tags: acid reflux DEX dexamethasone GERD hearatburn Source Type: blogs
Whining About DEX
Dexamethasone (DEX) is a part of many myeloma regimens - my doctor says " everything works better with DEX. " I ' ve taken it before, and not liked it then, but this most recent experience is something new indeed.
Sunday night I took the " usual " 40 mg dose, ten little 4 mg tablets, at bedtime. In the past this has worked OK for me because the DEX doesn ' t interfere with my sleep that first night. And it didn ' t interfere Sunday night, I slept well. Monday, then, was " DEX day, " full of energy, as if 200% caffeinated all day. I got a lot done, including an energetic 4-mile walk/run.
Trouble sta...
Source: Myeloma Hope - March 18, 2016 Category: Cancer & Oncology Tags: acid reflux DEX dexamethasone GERD hearatburn Source Type: blogs
Whining About DEX
Dexamethasone (DEX) is a part of many myeloma regimens - my doctor says "everything works better with DEX." I've taken it before, and not liked it then, but this most recent experience is something new indeed.
Sunday night I took the "usual" 40 mg dose, ten little 4 mg tablets, at bedtime. In the past this has worked OK for me because the DEX doesn't interfere with my sleep that first night. And it didn't interfere Sunday night, I slept well. Monday, then, was "DEX day," full of energy, as if 200% caffeinated all day. I got a lot done, including an energetic 4-mile walk/run.
Trouble started ...
Source: Myeloma Hope - March 18, 2016 Category: Cancer & Oncology Tags: acid reflux DEX dexamethasone GERD hearatburn Source Type: blogs
The Study Is Over
For me. Sad to say, because this treatment was the easiest I ' ve ever been on, and it has worked well for other people (with other blood cancers). Yesterday ' s blood tests and PET/CT show progression of the myeloma, however, and after 13 weeks (a quarter of a year!) it certainly should be heading the other way.
According to Dr WG the PET/CT does not show any new lesions in my bones, which probably means that the study treatment was doing some good. However, it does show increased activity in the existing lesions. For a while we wondered if that increasing activity was " flare, " caused by my own immun...
Source: Myeloma Hope - March 10, 2016 Category: Cancer & Oncology Source Type: blogs
The Study Is Over
For me. Sad to say, because this treatment was the easiest I've ever been on, and it has worked well for other people (with other blood cancers). Yesterday's blood tests and PET/CT show progression of the myeloma, however, and after 13 weeks (a quarter of a year!) it certainly should be heading the other way.
According to Dr WG the PET/CT does not show any new lesions in my bones, which probably means that the study treatment was doing some good. However, it does show increased activity in the existing lesions. For a while we wondered if that increasing activity was "flare," caused by my own immune...
Source: Myeloma Hope - March 10, 2016 Category: Cancer & Oncology Source Type: blogs
No More DEX
For over a week I had to take a little dexamethasone (DEX) now and then to manage a severe pain in my back and lower right abdomen. I don ' t know for sure why the DEX fixed the pain when Vicodin didn ' t, but it was magic. DEX is a powerful anti-inflammatory, so my theory is that something was inflamed and pressing on the spinal cord, and the DEX reduced that inflammation.
If that ' s what happened, I don ' t know why the inflammation showed up, or why it went away. I haven ' t taken any DEX for three full days now, and I ' m glad to be off DEX because it can have serious side effects from long term use.&nb...
Source: Myeloma Hope - March 4, 2016 Category: Cancer & Oncology Source Type: blogs
No More DEX
For over a week I had to take a little dexamethasone (DEX) now and then to manage a severe pain in my back and lower right abdomen. I don't know for sure why the DEX fixed the pain when Vicodin didn't, but it was magic. DEX is a powerful anti-inflammatory, so my theory is that something was inflamed and pressing on the spinal cord, and the DEX reduced that inflammation.
If that's what happened, I don't know why the inflammation showed up, or why it went away. I haven't taken any DEX for three full days now, and I'm glad to be off DEX because it can have serious side effects from long term use. I ma...
Source: Myeloma Hope - March 4, 2016 Category: Cancer & Oncology Source Type: blogs
DEX is OK
My doctors have now told me that a little DEX to manage the pain is OK on the current medication study. DEX can also have a treatment benefit, in addition to pain relief, and I suspect that the study authors are at least slightly interested in that result too. My daily medication log will now include the DEX, if any, and the dosage.
It ' s working quite well - one 4-mg tab of DEX seems to last at least 30 hours before the pain returns. I ' ve had three tabs so far, with a fourth due today if needed.
My main doctor at Mayo would also like me to come there (180 mile round trip) for another scan. In emaile...
Source: Myeloma Hope - February 26, 2016 Category: Cancer & Oncology Source Type: blogs
DEX is OK
My doctors have now told me that a little DEX to manage the pain is OK on the current medication study. DEX can also have a treatment benefit, in addition to pain relief, and I suspect that the study authors are at least slightly interested in that result too. My daily medication log will now include the DEX, if any, and the dosage.
It's working quite well - one 4-mg tab of DEX seems to last at least 30 hours before the pain returns. I've had three tabs so far, with a fourth due today if needed.
My main doctor at Mayo would also like me to come there (180 mile round trip) for another scan. In emai...
Source: Myeloma Hope - February 26, 2016 Category: Cancer & Oncology Source Type: blogs
Adventure In Pain
Lots has happened since my last post, and this is a record of those events. I have to write it somewhere. It ' s interesting to me, part of the journey, but you ' ll be the judge. It ' s mostly whining.
Background for the reader: Last Wednesday I had an infusion of a study drug and an infusion of Zometa, and also began a week of oral Valtrex in case my back pain might be the prodrome for shingles. By Friday the pain in my back and abdomen was much more pronounced, continuing into Saturday. I posted about that here.Saturday, February 20, 2016:
I have a new respect for people who are obliged to ...
Source: Myeloma Hope - February 24, 2016 Category: Cancer & Oncology Tags: DEX dexamethasone kidney pain Source Type: blogs
