So, the update from my kappa light chains being high is that my doctor will restage me. So I'll have a bone marrow biopsy (I asked for this under twilight sedation), 24-hour urine test, and a full body xray.
The doctor is thinking I'll start Velcade. So, of course, I need to know: will there be a reaction?
Or I guess I'm wondering what those of you on it have experienced and any tips for handling it. I'm assuming it's once a week subcutaneous (subQ).
Not sure if we will continue Revlimid. I guess we'll see how the tests come back.
Forums
Re: Starting Velcade - experiences, tips, responses?
Studies have shown that once per week Velcade is just as effective as twice!!!
Demand that!!!
You need to be VERY WATCHFUL for any sign at all of peripheral neuropathy and let your hem/onc know immediately if you have symptoms. Some people are very sensitive to Velcade such that once they have PN.... it STAYS!!
Best,
Steve
Demand that!!!
You need to be VERY WATCHFUL for any sign at all of peripheral neuropathy and let your hem/onc know immediately if you have symptoms. Some people are very sensitive to Velcade such that once they have PN.... it STAYS!!
Best,
Steve
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Steve - Name: Steve
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: December 2009
- Age at diagnosis: 55
Re: Starting Velcade - experiences, tips, responses?
I tolerated Velcade (twice a week) very easily. I also took dex on the day of my Velcade shot and the day after my shot. My Velcade was injected into my abdomen (subq). I always developed a bright red rash at the injection site, that lasted for more than a week, then faded away.
I did not develop any neuropathy. I did not have any other side effects. Actually, the dex was more difficult to handle than the Velcade.
Good luck to you.
I did not develop any neuropathy. I did not have any other side effects. Actually, the dex was more difficult to handle than the Velcade.
Good luck to you.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: Starting Velcade - experiences, tips, responses?
What Steve says is true. Once-a-week Velcade is preferred over twice-a-week dosing by some top specialists, including Dr. Rajkumar at the Mayo.
You can click on the link below to get the pdf of a transcript where he goes into this on slide 29 (there are some other good gems in that transcript).
http://tinyurl.com/lbbhn6d
Then there's also the "bubble trick" first posted by Dan in Phoenix on this thread:
https://myelomabeacon.org/forum/subq-velcade-welts-redness-rash-t1929-10.html
You can click on the link below to get the pdf of a transcript where he goes into this on slide 29 (there are some other good gems in that transcript).
http://tinyurl.com/lbbhn6d
Then there's also the "bubble trick" first posted by Dan in Phoenix on this thread:
https://myelomabeacon.org/forum/subq-velcade-welts-redness-rash-t1929-10.html
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Starting Velcade - experiences, tips, responses?
Christina,
I had to switch to Velcade due to a reaction to Revlimid after about 6 months of treatment, so now I receive Velcade on days 1, 4, 8 and 11, which is part of the Velcade first-line treatment. The Velcade website has a lot of info.
After 5 months of Velcade subq treatments with dex on Fridays, I have had some issues with neuropathy (just a small amount of toe numbness that my oncologist keeps a close watch on). I have also had some below-the-knee ache on both legs. I was prescribed Lyrica (pregabalin) 75 mg twice per day, which works very well. The Velcade treatments have worked extremely well.
Multibilly brings up a great statement about once per week treatments. Having more than 3 days between treatments could have the same effect and possibly fewer concerns about neuropathy. I myself will go over this with my own oncologist. Thanks, Multibilly.
Best of luck, Christina,
Castaway
I had to switch to Velcade due to a reaction to Revlimid after about 6 months of treatment, so now I receive Velcade on days 1, 4, 8 and 11, which is part of the Velcade first-line treatment. The Velcade website has a lot of info.
After 5 months of Velcade subq treatments with dex on Fridays, I have had some issues with neuropathy (just a small amount of toe numbness that my oncologist keeps a close watch on). I have also had some below-the-knee ache on both legs. I was prescribed Lyrica (pregabalin) 75 mg twice per day, which works very well. The Velcade treatments have worked extremely well.
Multibilly brings up a great statement about once per week treatments. Having more than 3 days between treatments could have the same effect and possibly fewer concerns about neuropathy. I myself will go over this with my own oncologist. Thanks, Multibilly.
Best of luck, Christina,
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Starting Velcade - experiences, tips, responses?
Christina,
Good luck with your Velcade therapy. I was on 7 cycles of twice weekly Velcade, Revlimid, and dex prior to my stem cell transplant, and it gave me a very good partial response. It also gave me very severe neuropathy.
My condition has progressed to a severe demyelinating neuropathy and I am now more concerned with my neurological problems than my myeloma. Contact your doctor at the first sign of neuropathy.
I wish you the best.
Good luck with your Velcade therapy. I was on 7 cycles of twice weekly Velcade, Revlimid, and dex prior to my stem cell transplant, and it gave me a very good partial response. It also gave me very severe neuropathy.
My condition has progressed to a severe demyelinating neuropathy and I am now more concerned with my neurological problems than my myeloma. Contact your doctor at the first sign of neuropathy.
I wish you the best.
-
Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Starting Velcade - experiences, tips, responses?
Common reactions include platelet drops and skin rash, and I had both of those. I also had to discontinue subQ injections (I am on a twice weekly schedule) just because of a cumulative effect of site reactions over time. I am now doing IV Velcade -- they start me on an IV drip, and then add in the Velcade shot into the IV. This has eliminated my site reactions tremendously. It takes a lot longer, though, as you might imagine. Twice in four courses I have had to not receive my 4th treatment due to very low platelets. They should check your blood levels before you take your treatments. Once weekly shots might work better with that situation? I'll discuss it with my hematologist on Tuesday.
As far as tips: To control or manage the rash, I suggest Head and Shoulders, daily. I also use it on the part of my body where the rash is the most troublesome (typically lower back, ankles, sometimes stomach), and it helps. My oncologist also suggested I use Benadryl at night, and if it is pretty bad, Allegra in the morning. This has helped a lot, but the antihistamines can leave you a bit groggy, and I've had to switch them out every so often because my body gets used to them.
I have experienced some neuropathy, but it is not too much. I think the neuropathy I have experienced from antibiotics is often worse, but the two can combine, so watch out for antibiotics as well.
As far as tips: To control or manage the rash, I suggest Head and Shoulders, daily. I also use it on the part of my body where the rash is the most troublesome (typically lower back, ankles, sometimes stomach), and it helps. My oncologist also suggested I use Benadryl at night, and if it is pretty bad, Allegra in the morning. This has helped a lot, but the antihistamines can leave you a bit groggy, and I've had to switch them out every so often because my body gets used to them.
I have experienced some neuropathy, but it is not too much. I think the neuropathy I have experienced from antibiotics is often worse, but the two can combine, so watch out for antibiotics as well.
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dranton - Name: Anton Tolman
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: August, 2014
- Age at diagnosis: 51
Re: Starting Velcade - experiences, tips, responses?
Make sure you tell your oncologist if you have any numbness, tingling, or pain in your feet, legs, or hands because, believe me, you don't want to get Velcade-induced peripheral neuropathy. God Bless.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Starting Velcade - experiences, tips, responses?
Christina,
I don't want to repeat what others have already offered. Here are 2 tips I have not seen anyone else offer:
Best wishes,
Daniel
I don't want to repeat what others have already offered. Here are 2 tips I have not seen anyone else offer:
- Ask the administering nurse to inject very, very slowly!! This will minimize injection sitepain and bruising.
- After your first round, if your numbers have improved or stabilized, ask to have the dose cut -- use only the minimum effective amount!
Best wishes,
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Starting Velcade - experiences, tips, responses?
Hello Christina,
Wish you all the best to you.
I was on my way for my 6th weekly Velcade shot when I started writing this. However, I was running late for my appointment and finally got a chance to edit and finalize my thoughts:
Yes, I am taking the dex-Velcade only once a week, too. I think this lets me have 5 good days every week. Please check if this can work for you, too.
First, just confirming that the Dan in Phoenix post that Multibilly has pointed out has been a major 'pain saver' for me, week after week. Last week, I tried to get the chemo pharmacy supervisor to try and train all the nurses, since that was my 5th shot, a new nurse every time and new discussion about the 'air bubble' technique. Nobody generally wants to 'learn' a technique from a 'pushy patient' ... though we are only trying to protect our interests and side effects. Some of the nurse were very open minded and declared that this makes a lot of sense, gets all the Velcade sub-Q, and, yes, it would leave a lot smaller residue in the outer skin layer. Maybe one day I can quote the Myeloma Beacon as reference and not have to drop names like Mayo Clinic in Scottsdale!
Also, confirming CabinGirl's experience: I have just had a few minutes of 'tingling' and that, too, only a couple of times over the past 5 weeks. No neuropathy. And the reaction to the dex is the only major side effect I face. I started following the pharmacist's recommendation and added 'heavy' to "take with breakfast." The extra food just before the dex helps me in the first few hours after taking dex.
Benadryl has helped me a lot to get some sleep (Thanks Tracy J); on the night of and the day after the dex-Velcade. My day-of and day-after dex-Velcade are difficult. A little exertion can lead to the heart racing and it lets me know to slow down and I have to just wait for the third day to resume my exercise and by the 5th day after dex-Velcade I am ready to go play golf or walk many miles at a brisk pace. All for my weekly Velcade regimen.
Avoid coffee and sugar (most sweets) on the day-of and on the day-after dex-Velcade. Anything that gives a 'boost'. dex already makes me quite hyper.
Please consult your oncology team to make sure that the dex and Revlimid (if you are going to take it) doses are optimum for you. I think the 7 day interval between the Velcade shots gives me a few good 'normal' days in between.
My own oncologist changed my weekly dex to 20 mg from the "standard" 40 mg written up by the chemo pharmacy before he signed off on the prescriptions. They had to refill my prescription at the counter but it has made a huge difference for me. 20 mg of the dex is all I can handle. Also, the latest literature indicates that even a 10 mg dex is sufficient to 'whet the appetite' of the plasma cells and get them to swallow up most of the Revlimid and Velcade ... and self destruct! I hope I can ask my oncologist to consider that, too, in my next visit in 3 weeks. Getting these levels right the first time can save you many weeks of trial and error, avoid nasty side effects and still get the optimum response.
And yes, as dranton wrote, the hemoglobin, platelets and WBCs / RBCs will all come down. In my case, they are now down to the 'just below the normal" levels so far. Again, a lot depends upon how strong a dose of the chemo you are given. Your chemo team would be checking your blood test before every Velcade shot, anyway.
Wishing you successful treatment with minimal side effects!!
K_Shash
Wish you all the best to you.
I was on my way for my 6th weekly Velcade shot when I started writing this. However, I was running late for my appointment and finally got a chance to edit and finalize my thoughts:
Yes, I am taking the dex-Velcade only once a week, too. I think this lets me have 5 good days every week. Please check if this can work for you, too.
First, just confirming that the Dan in Phoenix post that Multibilly has pointed out has been a major 'pain saver' for me, week after week. Last week, I tried to get the chemo pharmacy supervisor to try and train all the nurses, since that was my 5th shot, a new nurse every time and new discussion about the 'air bubble' technique. Nobody generally wants to 'learn' a technique from a 'pushy patient' ... though we are only trying to protect our interests and side effects. Some of the nurse were very open minded and declared that this makes a lot of sense, gets all the Velcade sub-Q, and, yes, it would leave a lot smaller residue in the outer skin layer. Maybe one day I can quote the Myeloma Beacon as reference and not have to drop names like Mayo Clinic in Scottsdale!
Also, confirming CabinGirl's experience: I have just had a few minutes of 'tingling' and that, too, only a couple of times over the past 5 weeks. No neuropathy. And the reaction to the dex is the only major side effect I face. I started following the pharmacist's recommendation and added 'heavy' to "take with breakfast." The extra food just before the dex helps me in the first few hours after taking dex.
Benadryl has helped me a lot to get some sleep (Thanks Tracy J); on the night of and the day after the dex-Velcade. My day-of and day-after dex-Velcade are difficult. A little exertion can lead to the heart racing and it lets me know to slow down and I have to just wait for the third day to resume my exercise and by the 5th day after dex-Velcade I am ready to go play golf or walk many miles at a brisk pace. All for my weekly Velcade regimen.
Avoid coffee and sugar (most sweets) on the day-of and on the day-after dex-Velcade. Anything that gives a 'boost'. dex already makes me quite hyper.
Please consult your oncology team to make sure that the dex and Revlimid (if you are going to take it) doses are optimum for you. I think the 7 day interval between the Velcade shots gives me a few good 'normal' days in between.
My own oncologist changed my weekly dex to 20 mg from the "standard" 40 mg written up by the chemo pharmacy before he signed off on the prescriptions. They had to refill my prescription at the counter but it has made a huge difference for me. 20 mg of the dex is all I can handle. Also, the latest literature indicates that even a 10 mg dex is sufficient to 'whet the appetite' of the plasma cells and get them to swallow up most of the Revlimid and Velcade ... and self destruct! I hope I can ask my oncologist to consider that, too, in my next visit in 3 weeks. Getting these levels right the first time can save you many weeks of trial and error, avoid nasty side effects and still get the optimum response.
And yes, as dranton wrote, the hemoglobin, platelets and WBCs / RBCs will all come down. In my case, they are now down to the 'just below the normal" levels so far. Again, a lot depends upon how strong a dose of the chemo you are given. Your chemo team would be checking your blood test before every Velcade shot, anyway.
Wishing you successful treatment with minimal side effects!!
K_Shash
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
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