Not Dead Yet
Not even close, doing pretty well actually, though I should post more often. I was diagnosed with myeloma in July, 2003, and according to my math that's well over 16 years ago. My family and I go to two different support groups, and I get celebrated as one of the long-timers. I like that, so very preferable to being dead, I think. I've been on Pomalyst (Pom) since March of 2008, with the exception of one year when the Pom trial ended. Trials of three different experimental regimens failed me then, but Darzalex became approved and the combo of Darzalex, Pom, and dexamethasone (dex) brought my numbers way back down. Eventual...
Source: Myeloma Hope - December 18, 2019 Category: Cancer & Oncology Tags: Darzalex dexamethasone light chains PET Pomalyst radiation treatment scapula Source Type: blogs

Myeloma Beatdown
Blogging again. June 26, 2019. After a lovely, easy, three-year ride on a two-drug myeloma regimen, my right shoulder was hurting and a PET scan showed a lesion (a collection of myeloma cells showing bright red) in my right scapula. M-spike and IgG hadn't changed, but Lambda Light Chains had more than doubled. The myeloma was back. It never gives up. My Mayo doctor ordered radiation treatment of that lesion, and added dexamethasone to the two-drug therapy. Now, a month later, the ten radiation treatments are complete and I'm taking the dex. Last week's blood test showed Lambda light chains back down to normal again, a very...
Source: Myeloma Hope - July 31, 2019 Category: Cancer & Oncology Tags: dexamethasone Lambda Light Chains myeloma non-secretory nonsecretory PET scan Radiation scapula Source Type: blogs

More Coming
2019 July 31 I'll be posting again here soon. Don (Source: Myeloma Hope)
Source: Myeloma Hope - July 31, 2019 Category: Cancer & Oncology Source Type: blogs

Good News Again
Stable: Since April of 2016 my treatment regimen has been Pomalyst (pomalidomide) and Darzalex (daratumumab), with dexamethasone in the early months. That combination brought my IgG and M-Spike down to the lowest levels seen since diagnosis 14 years ago. M-Spike has not been above 0.5 g/dL since August 2016, and it was 0.5 again last Tuesday. IgG was 536 mg/dL, about where it has been for more than a year. This is wonderful. The Darzalex protocol (with Pomalyst) calls for infusions once per week for 8 doses, then every other week for 8 more, and finally once per month " until disease progression. &...
Source: Myeloma Hope - September 18, 2017 Category: Cancer & Oncology Tags: acid reflux daratumumab Darzalex GERD PET scan pomalidomide Pomalyst thyroid Source Type: blogs

PET Scan Looks Good
Before I started the current regimen, a PET scan last April 9 displayed five different lytic lesions, three of them in the spine. Last Wednesday's PET scan showed that all five lesions are significantly decreased, and most are gone. One isn't even mentioned.This is excellent news. We knew that my M-Spike and IgG were down to about 40% of their April values, but that doesn't guarantee freedom from bone damage. With these PET results, we can be pretty sure that no damage is occurring. As we looked at the PET images together, Dr WG showed me a small chunk missing from a vertebra - looked like about BB...
Source: Myeloma Hope - November 13, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex DEX dexamethasone lesion PET scan pomalidomide Pomalyst vertebra Source Type: blogs

How to Cure a Cold
They say there's no cure. And " they " may be right, but there are a lot of things that we can do. Heard from doctors fairly recently (but note: I am not a doctor):Gargle with warm salt water to sooth and treat the throat.Use a neti pot (nasal irrigation) to clear sinuses.Take Claritin (loratadine) and Claritin-D (loratadine with pseudoephedrine) to reduce symptoms. Other common-sense and folk treatments:Keep extra warm, particularly the chest. Especially avoid getting chilled.Get lots of sleep - morning and afternoon naps if possible. In my opinion this is the best thing we can do.Chicken soup wit...
Source: Myeloma Hope - November 4, 2016 Category: Cancer & Oncology Source Type: blogs

All Good News
Friday, August 19, 2016: Wednesday I brought a Mayo Clinic blood draw " kit " to the local clinic, where they drew the blood and shipped it overnight back to Mayo. Last evening the results showed up on Mayo's patient portal, and I'm happy! Since early April my treatment regimen has been 2 mg of Pomalyst every day, with infusions of Darzalex every week and then every other week, currently with 12 mg of dexamethasone (DEX) on the weeks between Darzalex infusions. During that time my IgG and M-Spike dropped about 20% per month until a month ago, then leveled off. Wednesday's results confirmed that IgG and ...
Source: Myeloma Hope - August 20, 2016 Category: Cancer & Oncology Tags: acid reflux angina colonoscopy daratumumab Darzalex DEX dexamethasone IgG M-Spike myeloma Pomalyst Source Type: blogs

Bright Sun and Clouds
June 22, 2016Bright Sun:After the 10th Darzalex infusion, with daily 2 mg Pomalyst and weekly dexamethasone (DEX), IgG is down once again, from 644 to 515 mg/dL, another drop of 20%. M-spike is down too, by a similar ratio, from 0.6 to 0.5 g/dL. Both myeloma markers are now at a level never seen in my 13 years since diagnosis, and apparently continuing down. It probably means that the actual count of myeloma cells in my bones is declining by roughly the same ratio, a very hopeful thought.Clouds: HEMOGLOBIN: For the first time in years my hemoglobin is down a little, at 13.2 g/dL, where it is normally over 14...
Source: Myeloma Hope - June 26, 2016 Category: Cancer & Oncology Tags: angina daratumumab Darzalex heartburn pomalidomide Pomalyst Source Type: blogs

Bright Sun and Clouds
June 22, 2016 Bright Sun: After the 10th Darzalex infusion, with daily 2 mg Pomalyst and weekly dexamethasone (DEX), IgG is down once again, from 644 to 515 mg/dL, another drop of 20%.  M-spike is down too, by a similar ratio, from 0.6 to 0.5 g/dL.  Both myeloma markers are now at a level never seen in my 13 years since diagnosis, and apparently continuing down.  It probably means that the actual count of myeloma cells in my bones is declining by roughly the same ratio, a very hopeful thought. Clouds: HEMOGLOBIN: For the first time in years my hemoglobin is down a little, at 13.2 g/dL, where it is nor...
Source: Myeloma Hope - June 26, 2016 Category: Cancer & Oncology Tags: angina daratumumab Darzalex heartburn pomalidomide Pomalyst Source Type: blogs

Review of ICER Report on Treatment Options for Multiple Myeloma
Who is ICER? ICER is the Institute for Clinical and Economic Review. As far as I can tell, it is funded primarily by insurance companies and by nonprofit organizations who, in turn, are funded by insurance companies. They claim some funding by the federal government as well. Other members include pharmaceutical companies who apparently participate in order to have some voice in ICER's proceedings. A quick Google search shows that the title of many of ICER's documents is " Building Trust through Rationing, " which I believe is their mantra and suggests that rationing health care is their real p...
Source: Myeloma Hope - June 12, 2016 Category: Cancer & Oncology Tags: ICER myeloma report Source Type: blogs

Review of ICER Report on Treatment Options for Multiple Myeloma
Who is ICER? ICER is the Institute for Clinical and Economic Review.  As far as I can tell, it is funded primarily by insurance companies and by nonprofit organizations who, in turn, are funded by insurance companies.  They claim some funding by the federal government as well.  Other members include pharmaceutical companies who apparently participate in order to have some voice in ICER's proceedings.  A quick Google search shows that the title of many of ICER's documents is "Building Trust through Rationing," which I believe is their mantra and suggests that rationing health care is their rea...
Source: Myeloma Hope - June 12, 2016 Category: Cancer & Oncology Tags: ICER myeloma report Source Type: blogs

Yellow Roses
Wednesday, May 25, 2016:My sweeties and I bought a nice bouquet of yellow roses to celebrate my latest treatment results. In the last four weeks on Pomalyst (pomalidomide)(POM) and Darzalex (daratumumab)(DARA) my IgG has dropped 20% from 807 to 644 mg/dL, and M-spike 25% from 0.8 to 0.6 g/dL. These numbers are the lowest that I have seen in my 13 years with myeloma. Not all of that progress comes in the last four weeks, of course. Here is a chronology of treatments and results since January, 2016:Wed Feb 17 First Zometa infusion, serious reaction to something, likely the Zometa (not relevant to these results...
Source: Myeloma Hope - May 30, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex DEX dexamethasone IgG immunoglobulins M-Spike pomalidomide Pomalyst Source Type: blogs

Yellow Roses
Wednesday, May 25, 2016: My sweeties and I bought a nice bouquet of yellow roses to celebrate my latest treatment results.  In the last four weeks on Pomalyst (pomalidomide)(POM) and Darzalex (daratumumab)(DARA) my IgG has dropped 20% from 807 to 644 mg/dL, and M-spike 25% from 0.8 to 0.6 g/dL.  These numbers are the lowest that I have seen in my 13 years with myeloma. Not all of that progress comes in the last four weeks, of course.  Here is a chronology of treatments and results since January, 2016: Wed Feb 17 First Zometa infusion, serious reaction to something, likely the Zometa (not relevant to thes...
Source: Myeloma Hope - May 30, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex DEX dexamethasone IgG immunoglobulins M-Spike pomalidomide Pomalyst Source Type: blogs

Pomalyst, Darzalex, and Corticosteroids
Weekly Infusion Number 6: Blood draw, doctor visit, pre-medications, and Darzalex, about 6 hours total. I took 20 mg dexamethasone last night, as part of the Pomalyst regimen, and received 100 mg of prednisone IV before the Darzalex, as part of that regimen. As before no problems, no infusion reactions. This is getting boring. Boring is good. I love boring. (Source: Myeloma Hope)
Source: Myeloma Hope - May 10, 2016 Category: Cancer & Oncology Tags: corticosteroids daratumumab Darzalex dexamethasone pomalidomide Pomalyst prednisone Source Type: blogs

Pomalyst, Darzalex, and Corticosteroids
Weekly Infusion Number 6:  Blood draw, doctor visit, pre-medications, and Darzalex, about 6 hours total. I took 20 mg dexamethasone last night, as part of the Pomalyst regimen, and received 100 mg of prednisone IV before the Darzalex, as part of that regimen. As before no problems, no infusion reactions.  This is getting boring. Boring is good.  I love boring. (Source: Myeloma Hope)
Source: Myeloma Hope - May 10, 2016 Category: Cancer & Oncology Tags: corticosteroids daratumumab Darzalex dexamethasone pomalidomide Pomalyst prednisone Source Type: blogs

Infusion Number Five
And the Orange County Marathon in California last Sunday, my 95th since diagnosis, Whooee - still on track for 100 marathons this year. This was also the third weekly Darzalex infusion at our local hospital. Arriving at the infusion center at 7:45 am, I left at 2:45 pm, total seven hours. That includes a blood draw for a CBC and metabolic panel, a visit with the doctor, the pre-medications (Tylenol, Benadryl, and prednisone), and finally the Darzalex itself. No issues. In particular, I have never had any kind of infusion reaction from Darzalex. Apparently that makes me a lucky myelomiac, because th...
Source: Myeloma Hope - May 4, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex Source Type: blogs

Infusion Number Five
And the Orange County Marathon in California last Sunday, my 95th since diagnosis,  Whooee - still on track for 100 marathons this year. This was also the third weekly Darzalex infusion at our local hospital.  Arriving at the infusion center at 7:45 am, I left at 2:45 pm, total seven hours.  That includes a blood draw for a CBC and metabolic panel, a visit with the doctor, the pre-medications (Tylenol, Benadryl, and prednisone), and finally the Darzalex itself. No issues.  In particular, I have never had any kind of infusion reaction from Darzalex.  Apparently that makes me a lucky myelomiac, bec...
Source: Myeloma Hope - May 4, 2016 Category: Cancer & Oncology Tags: daratumumab Darzalex Source Type: blogs

Stunning Myeloma Marker Results
In the three weeks of this new three-drug regimen, Pomalyst, Darzalex, and dexamethasone (DEX), IgG has dropped 39%, from 1330 mg/dL to 807 mg/dL, in tests done by Mayo Clinic. This spectacular result brings IgG to the lowest level I have seen since my diagnosis in 2003. To confirm that result M-Spike dropped 33%, from 1.2 to 0.8 g/dL, also the lowest value since 2003, when it was measured once at 0.52 g/dL. This appears to be a spectacularly good omen, but a few things temper my enthusiasm just a little: 1. Three weeks ago, at the beginning of the new regimen, my blood also contained about a half dose of a diffe...
Source: Myeloma Hope - April 27, 2016 Category: Cancer & Oncology Tags: Darzalex dexamethasone Pomalyst Source Type: blogs

Stunning Myeloma Marker Results
In the three weeks of this new three-drug regimen, Pomalyst, Darzalex, and dexamethasone (DEX), IgG has dropped 39%, from 1330 mg/dL to 807 mg/dL, in tests done by Mayo Clinic.  This spectacular result brings IgG to the lowest level I have seen since my diagnosis in 2003.  To confirm that result M-Spike dropped 33%, from 1.2 to 0.8 g/dL, also the lowest value since 2003, when it was measured once at 0.52 g/dL. This appears to be a spectacularly good omen, but a few things temper my enthusiasm just a little: 1. Three weeks ago, at the beginning of the new regimen, my blood also contained about a half dose of a d...
Source: Myeloma Hope - April 27, 2016 Category: Cancer & Oncology Tags: Darzalex dexamethasone Pomalyst Source Type: blogs

Neutrophils 3700
I was guessing 1700 / uL, with a little false bravado, actually just hoping they would be over 1000, so I was shocked to see the smiling nurse with the printout showing 3700, nine times as many as yesterday's count of 400. Yesterday the doctor and nurses were concerned about neutropenia, asking me how I felt. Based on prior experience, however, I believed that the neutrophils were there all along, just not measurable for some reason. After a good night's sleep they have to be teased out of hiding, or out of some other phase, or whatever neutrophils do. Note: I am not a doctor - what happens to neutrophils ov...
Source: Myeloma Hope - April 26, 2016 Category: Cancer & Oncology Tags: neutropenia neutrophils Source Type: blogs

Neutrophils 3700
I was guessing 1700 / uL, with a little false bravado, actually just hoping they would be over 1000, so I was shocked to see the smiling nurse with the printout showing 3700, nine times as many as yesterday's count of 400.  Yesterday the doctor and nurses were concerned about neutropenia, asking me how I felt.  Based on prior experience, however, I believed that the neutrophils were there all along, just not measurable for some reason.  After a good night's sleep they have to be teased out of hiding, or out of some other phase, or whatever neutrophils do. Note: I am not a doctor - what happens to neutrophi...
Source: Myeloma Hope - April 26, 2016 Category: Cancer & Oncology Tags: neutropenia neutrophils Source Type: blogs

Where Oh Where Have My Neutrophils Gone?
In advance of tomorrow's planned fourth Darzalex infusion, the doctors did a CBC with differential today to see how my neutrophils were standing up to the Darzalex / Pomalyst combination. Surprise! Neutrophils were just 400/uL, where the reference range for this lab is 1800 to 7700 /uL. In other words, my neutrophils measured less than one fourth of the value representing the very bottom of the reference range - the lowest count that I remember in almost 13 years with myeloma. Doctors and nurses were all asking if I felt OK, because a low neutrophil count (neutropenia) can result inneutropenic fever, potenti...
Source: Myeloma Hope - April 26, 2016 Category: Cancer & Oncology Tags: neutropenia neutrophils Source Type: blogs

Where Oh Where Have My Neutrophils Gone?
In advance of tomorrow's planned fourth Darzalex infusion, the doctors did a CBC with differential today to see how my neutrophils were standing up to the Darzalex / Pomalyst combination.  Surprise!  Neutrophils were just 400/uL, where the reference range for this lab is 1800 to 7700 /uL. In other words, my neutrophils measured less than one fourth of the value representing the very bottom of the reference range - the lowest count that I remember in almost 13 years with myeloma.  Doctors and nurses were all asking if I felt OK, because a low neutrophil count (neutropenia) can result in neutropenic fever, p...
Source: Myeloma Hope - April 26, 2016 Category: Cancer & Oncology Tags: neutropenia neutrophils 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 eight we...
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-recent stu...
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 fig...
Source: Myeloma Hope - April 6, 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 6, 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-mi...
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-mi...
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...
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 ...
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. I may nee...
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 emailed me...
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 tolera...
Source: Myeloma Hope - February 24, 2016 Category: Cancer & Oncology Tags: DEX dexamethasone kidney pain 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...
Source: Myeloma Hope - February 24, 2016 Category: Cancer & Oncology Tags: DEX dexamethasone kidney pain Source Type: blogs

Lots More Whining
Just can't get enough of it!Last Wednesday's visit to Mayo Clinic marked the end of the every-week 200-mile round trips, but the results didn't shed much light on my medical condition. Is the " flare " in my vertebrae due to the myeloma itself, or is it inflammation caused by my immune system attacking the myeloma? We're hoping for the latter, of course, and sticking with the current medication study, but this does require more than a little faith.Here is the whining:  Last night I was quite uncomfortable for much of the night. The neuropathic pain on the right side of my back became much...
Source: Myeloma Hope - February 20, 2016 Category: Cancer & Oncology Source Type: blogs

Lots More Whining
Just can't get enough of it! Last Wednesday's visit to Mayo Clinic marked the end of the every-week 200-mile round trips, but the results didn't shed much light on my medical condition.  Is the "flare" in my vertebrae due to the myeloma itself, or is it inflammation caused by my immune system attacking the myeloma?  We're hoping for the latter, of course, and sticking with the current medication study, but this does require more than a little faith. Here is the whining:   Last night I was quite uncomfortable for much of the night.  The neuropathic pain on the right side of my back beca...
Source: Myeloma Hope - February 20, 2016 Category: Cancer & Oncology Source Type: blogs

Some News Might be Good News
Tuesday night I felt a little back pain while in bed, unusual for me. As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October. Doctor WG called last night to talk about those results:Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae. That is very good news.However, we still don't know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation ( " flare " ) caused by my own i...
Source: Myeloma Hope - February 12, 2016 Category: Cancer & Oncology Source Type: blogs

Some News Might be Good News
Tuesday night I felt a little back pain while in bed, unusual for me.  As it happened, we had already scheduled an MRI at Mayo Clinic for the very next day to look at the nearby vertebrae, numbers T5, T9, and T11, and compare that with MRI images from last October.  Doctor WG called last night to talk about those results: Neither the doctor nor the the radiologist can see any significant damage to the bones of those vertebrae.  That is very good news. However, we still don't know for sure whether the PET scan hot spots are due to increased tumor burden or to inflammation ("flare") caused by my ow...
Source: Myeloma Hope - February 12, 2016 Category: Cancer & Oncology Source Type: blogs

No News Is No News
We still don't know if the current immune therapy is working. Are the vivid PET scan hot spots just " flares " of inflammation caused by my own immune system attacking the myeloma cells, or are they actually increases in the myeloma tumor burden? Yesterday's MRI of the thoracic spine may give us the answer, when those 3D images are compared with a previous MRI from last October. That takes an expert radiologist, and results should come today. A preliminary view seemed to suggest no changes in the bone structure of my vertebrae, but I'd like that confirmed before I run again. If you haven't heard, a...
Source: Myeloma Hope - February 11, 2016 Category: Cancer & Oncology Source Type: blogs