Aaaannnnd we're off. I had my first Velcade injection today along with some dex. The Revlimid still has not arrived at my house, which I'm slightly worried about, but I'm assured that it's on it's way and I should be able to start soon. My current plan is to take the Revlimid before bed, and I'd love suggestions / alternatives if there are better ones.
I was attempting to follow Rick's advice pre-Velcade and I ate an entire large pizza last night in effort to raise my blood sugar. It was delicious, but a big break from the diet I have been following – I have been eating ketogenic. Mission accomplished in that my blood sugar was 96 at the hospital in the morning, but the carb loading had an interesting side effect. I have been relatively pain free for over a week in my left leg and shoulder – my worst spots. About 1 hour after finishing the pizza until this morning, I have been in a lot of pain. It's clear to me that this isn't good, and I'm going to have to resort to more subtle means to raise my blood sugar before Velcade in the future. (like eating a muffin 30 minutes to an hour before the injection maybe). This was a good experiment that validated a few things for me:
1) I can easily eat whatever I need to if I need to gain some weight in a hurry, and
2) The ketogenic diet suits me well (I'll continue to reevaluate).
Numbers:
My M-spike on December 8 was 2.6 g/dl (26 g/l), down from 2.9 on December 1, and I was only taking dexamethasone. That's certainly within lab-to-lab variance, but I'll take it as a good sign.
Blood protein back down to 8.1 today (Dec 13) from 9.6 on Dec 8, so that's also encouraging.
My white blood cell count shot up to 10.5 today (Dec 13) from 6.7 on Dec 8, but I was told that was expected from the dex pre-loading that the doc had me do (20 mg per day for 4 days from Thursday to Sunday).
Albumin is down to 3.6 today (Dec 13) from 4.3 on Dec 8. That's a bit concerning to me because it's the only time I've seen movement.
Still waiting for the beta 2 microglobulin result (for staging), and the bone marrow cytogenetics (for risk factor). That's honestly a bit maddening, but since it's out of my control, I'm trying not to think about it too much.
I'll be back at the doctor on Friday for another Velcade injection (doing twice a week), and a consult with the radiation doctor (hopefully to start zapping some of these lesions). I expect I'll keep this thread going through my induction, and start a new one when I get to autologous stem cell transplant.
Thanks to everyone for your kind words and advice in my introductory thread,
"Chris, 42, starting my journey" (started Nov 29, 2016)
If I have not acknowledged it in that thread, please know that I have been acting on most of the suggestions made and appreciate it more than I could ever say.
I'm wishing for good things for everyone on their journey, and am thinking about all of you going through your stem cell transplants so close to the holidays. I am learning a ton from you sharing your experiences.
Much Love
Forums
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: PostiveChris's RVD / VRD induction therapy
Chris,
Try eating a banana and have a glass of milk (1 or 2%) about an hour prior to having your glucose tested. They are much healthier than pizza and surprisingly will raise your blood sugar easily. Works well for diabetics suffering from low blood sugar as well. Keep an eye out as the dex can raise your blood sugar as well. Try to stay in a good range and your body will be happy.
Good luck.
Try eating a banana and have a glass of milk (1 or 2%) about an hour prior to having your glucose tested. They are much healthier than pizza and surprisingly will raise your blood sugar easily. Works well for diabetics suffering from low blood sugar as well. Keep an eye out as the dex can raise your blood sugar as well. Try to stay in a good range and your body will be happy.
Good luck.
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loveparis - Name: loveparis
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June, 2015
- Age at diagnosis: 61
Re: PostiveChris's RVD / VRD induction therapy
Hi Chris.
I'm glad you have started while awaiting the Revlimid (and the tests); we've had a few close calls with the process and shipments, but have been luckier in that it has managed to make it just in time.
I'm also glad you are still up to both humor and an occasional excess.
I'd agree that some fruit or a smoothie for breakfast before chemo and a well-packed snack at infusion / injection might be all you need sugar-wise. I hope the pain you had lets up and that you get a great response with the RVD.
My husband was intolerant to large meals, which we thought was the Revlimid. It really threw his gut and eating into disarray initially, but he managed to figure out what and when he could eat. So will you. But your observation has taught me today that perhaps the calorie load / larger meals were both pro-inflammatory and pro-tumor growth, and his then loss of appetite was the response.
My husband's albumin has bounced around a bit but was only low briefly during his autologous stem cell transplant. He still eats a lot of eggs and cold water fish and almost all our soups and stews are from bone broth.
rick
I'm glad you have started while awaiting the Revlimid (and the tests); we've had a few close calls with the process and shipments, but have been luckier in that it has managed to make it just in time.
I'm also glad you are still up to both humor and an occasional excess.
I'd agree that some fruit or a smoothie for breakfast before chemo and a well-packed snack at infusion / injection might be all you need sugar-wise. I hope the pain you had lets up and that you get a great response with the RVD.
My husband was intolerant to large meals, which we thought was the Revlimid. It really threw his gut and eating into disarray initially, but he managed to figure out what and when he could eat. So will you. But your observation has taught me today that perhaps the calorie load / larger meals were both pro-inflammatory and pro-tumor growth, and his then loss of appetite was the response.
My husband's albumin has bounced around a bit but was only low briefly during his autologous stem cell transplant. He still eats a lot of eggs and cold water fish and almost all our soups and stews are from bone broth.
rick
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rick - Name: rick
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: nov 2015
- Age at diagnosis: 50
Re: PostiveChris's RVD / VRD induction therapy
Quick update:
A little over 24 hours post pizza overload, and my pain is gone again – or at least back to pre-pizza levels, thank goodness.
A little over 24 hours post pizza overload, and my pain is gone again – or at least back to pre-pizza levels, thank goodness.
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: PostiveChris's RVD / VRD induction therapy
I started Tuesday as well. So far so good.
The only weird thing for me is that the dex (or something) is killing my appetite.
Not the steroid munchies I had expected.
Glad you are doing well!
The only weird thing for me is that the dex (or something) is killing my appetite.
Not the steroid munchies I had expected.
Glad you are doing well!
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Benny - Name: BM1971
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2/16
- Age at diagnosis: 45
Re: PostiveChris's RVD / VRD induction therapy
Glad you have got off to a good start.
Regards,
Dean
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: PostiveChris's RVD / VRD induction therapy
Thanks Dean, I've been following your transplant. Wishing you the best. I was in London a few times this year – I actually started feeling my symptoms after my trip there in April.
Benny, I found that anxiety was killing my appetite. It's back on track now after a 10 pound weight loss (some of which I also attribute to the dietary changes I made to eat more ketogenic). Glad to hear we'll be fighting together on a similar schedule. Looking forward to sharing experiences.
Some great news came yesterday from my primary care physician. The FISH analysis came back negative for everything that they were looking for. I'm not sure this is the extent of all of the DNA testing they're doing, and I haven't talked about it with my specialist yet, but I'm taking it as a good sign.
Probe Chrom. Target No. cells Result Comment
CCND1/IGH t(11;14)(q13;q32) 200 Negative no evidence of alternate IGH rearrangement
D13S319/LAMP1 del(13q)/monosomy #13 200 Negative
P53/D17Z1 P53 deletion at 17p13 200 Negative
Interpretation:
Normal 46,XY male karyotype
Negative by FISH for CCND1/IGH gene rearrangement
Negative by FISH for del(13q)
Negative by FISH for P53 deletion (this is also referenced as 17p13 in another part of the larger analysis)
Revlimid came today, and I'm going to take it at about 9 pm tonight. The process of getting the medication delivered was a bit stressful with me making several calls to the hospital and the pharmacy, but I suspect that now that I have a handle on how it works it will go smoother in the future.
Still waiting on that beta 2 microglobulin test to come back, but given the FISH results I'm a lot more at ease than I was a few days ago..
I'm back for another Velcade injection on Friday. I'm doing 2x/week Velcade for a 21 day cycle (including the week off), and daily Revlimid for a 28 day cycle (including the week off). The nurse mentioned that I won't get any pure weeks off because I'll always be taking something (except for the rare case where the Revlimid and Velcade weeks off are at the same time) and should expect my blood numbers to jump around, but that this was a more aggressive schedule (presumably because my body is ok to handle it) which should be more likely to produce positive results.
The only side effect of the Velcade was some constipation. I can't totally attribute it to the Velcade just yet, but I finally managed to solve the issue with some coffee this morning.
Much Love
Benny, I found that anxiety was killing my appetite. It's back on track now after a 10 pound weight loss (some of which I also attribute to the dietary changes I made to eat more ketogenic). Glad to hear we'll be fighting together on a similar schedule. Looking forward to sharing experiences.
Some great news came yesterday from my primary care physician. The FISH analysis came back negative for everything that they were looking for. I'm not sure this is the extent of all of the DNA testing they're doing, and I haven't talked about it with my specialist yet, but I'm taking it as a good sign.
Probe Chrom. Target No. cells Result Comment
CCND1/IGH t(11;14)(q13;q32) 200 Negative no evidence of alternate IGH rearrangement
D13S319/LAMP1 del(13q)/monosomy #13 200 Negative
P53/D17Z1 P53 deletion at 17p13 200 Negative
Interpretation:
Normal 46,XY male karyotype
Negative by FISH for CCND1/IGH gene rearrangement
Negative by FISH for del(13q)
Negative by FISH for P53 deletion (this is also referenced as 17p13 in another part of the larger analysis)
Revlimid came today, and I'm going to take it at about 9 pm tonight. The process of getting the medication delivered was a bit stressful with me making several calls to the hospital and the pharmacy, but I suspect that now that I have a handle on how it works it will go smoother in the future.
Still waiting on that beta 2 microglobulin test to come back, but given the FISH results I'm a lot more at ease than I was a few days ago..
I'm back for another Velcade injection on Friday. I'm doing 2x/week Velcade for a 21 day cycle (including the week off), and daily Revlimid for a 28 day cycle (including the week off). The nurse mentioned that I won't get any pure weeks off because I'll always be taking something (except for the rare case where the Revlimid and Velcade weeks off are at the same time) and should expect my blood numbers to jump around, but that this was a more aggressive schedule (presumably because my body is ok to handle it) which should be more likely to produce positive results.
The only side effect of the Velcade was some constipation. I can't totally attribute it to the Velcade just yet, but I finally managed to solve the issue with some coffee this morning.
Much Love
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: PostiveChris's RVD / VRD induction therapy
Second Velcade injection was yesterday. So far so good. All my blood numbers were good. I tried the banana trick, and that got my blood sugar to 93 before the injection. I'll take it!
There was a red spot at the spot of my previous Velcade injection, but I'm told and have read this is normal. It didn't itch or bother me, so it's all good.
More good news came in yesterday via the Beta-2 Microglobulin test. It seems I fit the criteria for Stage I based on my Beta-2 Microglobulin < 3.5 mg/L (1.45) and Albumin >= 3.5 g/dL (3.7 as of yesterday, has ranged from 4.4-3.6). For whatever that's worth given that the consensus seems to be that the staging isn't as important for treatment options or prognosis.
I'm taking the Revlimid ok also. No side effects so far, although if you asked my mom and wife they might suggest that I'm totally immune to the dex at all times.
We also met with the radiation oncologist yesterday and agreed to treat my femur and my C2/C1 neck area, leaving the T12 for now until I consult with the surgeon around whether or not he wants to do a vertebroplasty. It's not really bothering me (nor is my neck), but that's mostly because I've been taking it really easy.
We got to see the new Star Wars movie yesterday after the hospital, and it was really awesome to get out of the house to do something fun. I need to do more of that.
Next step is another injection on Tuesday and a visit with the nurse where I need to schedule the surgeon visit and ask about the Zometa scheduling.
I hope everyone has a nice, safe, healthy weekend.
Much Love
There was a red spot at the spot of my previous Velcade injection, but I'm told and have read this is normal. It didn't itch or bother me, so it's all good.
More good news came in yesterday via the Beta-2 Microglobulin test. It seems I fit the criteria for Stage I based on my Beta-2 Microglobulin < 3.5 mg/L (1.45) and Albumin >= 3.5 g/dL (3.7 as of yesterday, has ranged from 4.4-3.6). For whatever that's worth given that the consensus seems to be that the staging isn't as important for treatment options or prognosis.
I'm taking the Revlimid ok also. No side effects so far, although if you asked my mom and wife they might suggest that I'm totally immune to the dex at all times.
We also met with the radiation oncologist yesterday and agreed to treat my femur and my C2/C1 neck area, leaving the T12 for now until I consult with the surgeon around whether or not he wants to do a vertebroplasty. It's not really bothering me (nor is my neck), but that's mostly because I've been taking it really easy.
We got to see the new Star Wars movie yesterday after the hospital, and it was really awesome to get out of the house to do something fun. I need to do more of that.
Next step is another injection on Tuesday and a visit with the nurse where I need to schedule the surgeon visit and ask about the Zometa scheduling.
I hope everyone has a nice, safe, healthy weekend.
Much Love
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
Re: PostiveChris's RVD / VRD induction therapy
Chris,
Great news on your test results!!! I am on the same schedule as you. Had my 2nd round of Velcade on Friday. I too have the rash at the injection site but can live with that all day long! I am doing dex 20 mg 4x per week, and other than appetite suppression, I am handling it fine.
I start Zometa monthly on Tuesday and have been tolerating the Revlimid 25 mg nightly without too much trouble. Very much looking forward to seeing how my M-spike does after the first cycle.
Be well and keep rocking the positivity. You inspire me.
Great news on your test results!!! I am on the same schedule as you. Had my 2nd round of Velcade on Friday. I too have the rash at the injection site but can live with that all day long! I am doing dex 20 mg 4x per week, and other than appetite suppression, I am handling it fine.
I start Zometa monthly on Tuesday and have been tolerating the Revlimid 25 mg nightly without too much trouble. Very much looking forward to seeing how my M-spike does after the first cycle.
Be well and keep rocking the positivity. You inspire me.
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Benny - Name: BM1971
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 12/2/16
- Age at diagnosis: 45
Re: PostiveChris's RVD / VRD induction therapy
Oh wow. Velcade constipation strikes back. Today was worse than last time. I feel like I need a plan going into the next injection. I bought a stool softener and probiotic. Reading through the threads, this is a common issue. Would love to know what works for others.
Other than that, I feel like I'm just getting a little bit of the groggy "chemo brain."
Other than that, I feel like I'm just getting a little bit of the groggy "chemo brain."
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PositiveChris - Name: Chris
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 11/28/2016
- Age at diagnosis: 42
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