Wow, 10 years post transplant. That is great!
-Chris
Forums
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: subcutaneous Velcade
Ok. My partner just had his sixth shot of subQ Velcade today. He hasn't had any side effects any more. Nothing at all. His jaw is a little tender sometimes but he says it doesn't hurt. No PN, no nausea really, nothing else. So that's been great. On week 4 his potassium level shot up but its come down again now. His platelets are ok but the paraprotein level only dropped very slightly. His IgM and IgA has lowered. His free kappa has come down. The doctor seems concerned about the paraprotein level barely dropping. Will see how it is a couple of weeks time when we can get the next reading.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: subcutaneous Velcade
I received Velcade IV from May 2010 (date of my dx) through Aug 2011. In Sep 2011 I started Velcade subcutaneously. I receive weekly injections. In addition I take two Metanx (a B6, B12, and alpha lipoic acid supplement) pills per day.
The peripheral neuropathy (PN) in my hands and feet was pretty severe with the IV method. My manual dexterity was at times impaired to the point that I couldn't close the buttons on my shirt. And the burning in my feet was so strong that it made walking painful.
The PN in my hands and feet has dissipated since Sep. The manual dexterity in my hands has improved. I now can walk (25 minutes/day) and the pain is tolerable.
I'm glad I switched, I plan to continue Velcade subc with Metanx, and I encourage other to check out this approach subject to approval by their oncologist.
Pete N
The peripheral neuropathy (PN) in my hands and feet was pretty severe with the IV method. My manual dexterity was at times impaired to the point that I couldn't close the buttons on my shirt. And the burning in my feet was so strong that it made walking painful.
The PN in my hands and feet has dissipated since Sep. The manual dexterity in my hands has improved. I now can walk (25 minutes/day) and the pain is tolerable.
I'm glad I switched, I plan to continue Velcade subc with Metanx, and I encourage other to check out this approach subject to approval by their oncologist.
Pete N
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Pete N - Name: Pete N
- Who do you know with myeloma?: me in south Florida
Re: subcutaneous Velcade
Bortezomib/Velcade- induced peripheral neuropathy can be very challenging. I am glad to hear that your peripheral neuropathy has improved with dose reduction, change in administration, and supplements. If you are still impaired or in pain. There are additional medications such as gapapentin, Lyrica, or cymbalta that can be utilized. Further, there may be alternate medications you may be able to utlilize for your myeloma that do not cause PN. Obviously, I do not know your myeloma history at this time, but part of our job is to maximize your quality of life as well.
Hot or cold compresses may also help(be careful of electric ones however). Capsacin creams, vitamin E, or cocoa butter salves a couple times a day are also beneficial.
This is the list I give my patients:
Multi-B Complex Vitamins: with B1, B6, B12, B6 at recommended daily allowance. -B6 dose should not exceed 100 mg
Folic Acid 1 mg/day
Vitamin E: Up to 400 IU daily
Supplements:
Acetyl L-Carnitine: 500 mg twice daily with food AND Alpha-Lipoic acid: 500mg a daily with food
-OR a combination pill of : Alpha lipoic acid 200 mg Acetyl-L-Carnitine 500 mg: take one tablet twice a day
L-glutamine: 500mg TID with meals and can titrate up to 3gms daily
Cocoa butter: (rich in vitamin E and other emollients): Apply to extremities twice a day with gentle massage
Hot or cold compresses may also help(be careful of electric ones however). Capsacin creams, vitamin E, or cocoa butter salves a couple times a day are also beneficial.
This is the list I give my patients:
Multi-B Complex Vitamins: with B1, B6, B12, B6 at recommended daily allowance. -B6 dose should not exceed 100 mg
Folic Acid 1 mg/day
Vitamin E: Up to 400 IU daily
Supplements:
Acetyl L-Carnitine: 500 mg twice daily with food AND Alpha-Lipoic acid: 500mg a daily with food
-OR a combination pill of : Alpha lipoic acid 200 mg Acetyl-L-Carnitine 500 mg: take one tablet twice a day
L-glutamine: 500mg TID with meals and can titrate up to 3gms daily
Cocoa butter: (rich in vitamin E and other emollients): Apply to extremities twice a day with gentle massage
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: subcutaneous Velcade
My partner has had 10 SQ Velcade injections but his paraprotein level is only dropping by 0.5 each time - went from 14.5 to 14 to 13.5. His platelet count is good. - 260. Everything else has remained almost unchanged from his previous results. He has suffered no side effects except a bit of redness and itchiness at the injection site but no nausea, no PN etc. The specialist says the SQ isn't working. That he was expecting a dramatic drop and its not happening. He wants him to swap to IV.
I was wondering what sort of drop in the paraprotein or M spike level other people achieved with SQ Velcade and in what time period and also what drop was achieved with IV Velcade and over what time period.
I was wondering what sort of drop in the paraprotein or M spike level other people achieved with SQ Velcade and in what time period and also what drop was achieved with IV Velcade and over what time period.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: subcutaneous Velcade
My husband had terrible local reactions from the subQ Velcade. The first couple of times there was no reaction whatsoever. Then we noticed it was a little red at the injection site. The following week it was VERY red. It was about six inches all around and felt hot to the touch. It ultimately peeled. It was quite nasty. He then went back to the IV. After a few weeks, he tried subQ again--same thing happened. He was very disappointed because his neuropathy is far worse in his hands with the IV Velcade. Anyone else have this happen?
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Mama4242
Re: subcutaneous Velcade
Does Sq Velcade bring about results the same as IV Velcade, but slower? That is, is it as effective as IV Velcade in the longer term, but not necessarily in the shorter term?
My husband's specialist is used to the dramatic drop from the IV patients and the drop in my husbands results has just been very slow. So as long as its going down, I would have thought it was working, even if its a lot slower ?
My husband's specialist is used to the dramatic drop from the IV patients and the drop in my husbands results has just been very slow. So as long as its going down, I would have thought it was working, even if its a lot slower ?
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Subcutaneous Velcade v IV Velcade
While studies seem to indicate that Sq Velcade is only a slight difference with IV, from what I can read IV seems to drop the M spike dramatically. With the Sq, my husband's experience is that it is dropping very slightly and very slowly.
I wanted to know whether other patients have experienced the same and if so, did they continue or swap back to IV or add dex and other medications or does it just take longer to get the same results.
I wanted to know whether other patients have experienced the same and if so, did they continue or swap back to IV or add dex and other medications or does it just take longer to get the same results.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
Re: subcutaneous Velcade
Had Iv Velcade in spring 2011 prior to Sct
Iga dropped fron 65 to 35 in 3 cycles. Only at the end of 3rd cycle did pn show up in my feet. We had planned to stop at for Sct
August 2011 started subq Velcade as Sct only got me 9 months and Revlimid failed. On cycle 9. Still no pn. Velcade has quit working but that is another story. Getting 2.7ml split in two needles. Usually do shot in back of arm, but sometimes that gets sore and switch to tummy. Stomach usually gets redder and sorer. Seems to be getting worse the longer we do this.
I have 14'4 iga multiple myeloma. Next up pomalidomide trial
Iga dropped fron 65 to 35 in 3 cycles. Only at the end of 3rd cycle did pn show up in my feet. We had planned to stop at for Sct
August 2011 started subq Velcade as Sct only got me 9 months and Revlimid failed. On cycle 9. Still no pn. Velcade has quit working but that is another story. Getting 2.7ml split in two needles. Usually do shot in back of arm, but sometimes that gets sore and switch to tummy. Stomach usually gets redder and sorer. Seems to be getting worse the longer we do this.
I have 14'4 iga multiple myeloma. Next up pomalidomide trial
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Merek007
Re: subcutaneous Velcade
Thanks Merek007. Can I ask what your M spike was when you started and in what sort of increments it came down on the sq Velcade. My partner's IGa hovers between .65 and .67 g/l (Australian measurements) which I'm assuming is the same as your 65 but I'd really like to know the M spike or paraprotein level.
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laetetia - Who do you know with myeloma?: De facto
- When were you/they diagnosed?: 2001
- Age at diagnosis: 53
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