In this August 23 2014 posting, "Self-injecting Velcade - my experience", coop223 reports that he has been doing his own Velcade injections at home with his doctor's approval and some training at his clinic. There have been replies posted by five other people, but nobody else has reported being allowed to do this.
So I'm wondering how common it is.
--Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
Re: Self-injecting Velcade - how common is it?
I got Velcade for 3x3 weeks twice a week. One of the times without any other treatment.
The nurse explained that they considered giving it to be self injected at home. But that since during the initial treatment before ASCT [autologous stem cell transplant] it was only for 6 or 8 days, and since many of the patients where old and nervous, they did not propose it. She also said that they wanted to talk to the patients about side effects and make sure that the dose was reduced or treatment stopped if the peripheral nerve symptoms got too strong or affected fingers/hands.
Next week I will get Neupogen injections every evening at 22.00 (10 pm). Since I asked about the option to do it myself with the Velcade, the nurse said that they would normally arrange for the local home nurse service to drop by at 22 to do it. But that I could also do it myself. We agreed to the latter. And if I panic, then to take the car to the heamatological department at the hospital and have a nurse do it. It is only 20 minutes by car.
Neupogen, Velcade and for example diabetes injections that do not create the risk of anaphylactic shock can obviously be self injected. But with some of them, like Velcade, communication is very important.
Another issue is distance. In the US, Sweden, Norway, Australia and many other countries, distance is a serious problem. In my country, Denmark, most people live within 1 - 200 km (120 miles) from the nearest hospital with myeloma specialists. Half of the population probably has less than 1 hour by car, or pretty good public transport (or even on bicycle) to the treatment. If you have a long distance, self injection is probably a means to improve your quality of life. Short distances and nice smiling nurses (men as well as women) may change that
The nurse explained that they considered giving it to be self injected at home. But that since during the initial treatment before ASCT [autologous stem cell transplant] it was only for 6 or 8 days, and since many of the patients where old and nervous, they did not propose it. She also said that they wanted to talk to the patients about side effects and make sure that the dose was reduced or treatment stopped if the peripheral nerve symptoms got too strong or affected fingers/hands.
Next week I will get Neupogen injections every evening at 22.00 (10 pm). Since I asked about the option to do it myself with the Velcade, the nurse said that they would normally arrange for the local home nurse service to drop by at 22 to do it. But that I could also do it myself. We agreed to the latter. And if I panic, then to take the car to the heamatological department at the hospital and have a nurse do it. It is only 20 minutes by car.
Neupogen, Velcade and for example diabetes injections that do not create the risk of anaphylactic shock can obviously be self injected. But with some of them, like Velcade, communication is very important.
Another issue is distance. In the US, Sweden, Norway, Australia and many other countries, distance is a serious problem. In my country, Denmark, most people live within 1 - 200 km (120 miles) from the nearest hospital with myeloma specialists. Half of the population probably has less than 1 hour by car, or pretty good public transport (or even on bicycle) to the treatment. If you have a long distance, self injection is probably a means to improve your quality of life. Short distances and nice smiling nurses (men as well as women) may change that
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: Self-injecting Velcade - how common is it?
LarryD,
I think that Coop described his self injections of Velcade and his reasons for doing them really well in the post you have linked to. Everyone probably feels differently about self injection. I am hoping to start my stem cell harvest and storage in December so I will be doing self injections of Neupogen. I live 200 miles from the hospital that will be doing the cell harvest, so I need to do the self injections starting at home and leading up to the harvest while staying at a hotel a few days before. As Lev commented, distance can be an issue for a lot of us.
I am on my wife's insurance and the wording in that policy for cancer treatments like Velcade injections show it to be in a setting like an oncologist's office or hospital. Not sure if they would cover self injections. My Velcade injections are $1612.00 each. You might want to look at your coverage and see how it covers those injections and see what they approve of as far as self injections go.
I live fairly close to my local oncologist so I go in there for my Velcade subQ injections. I also have an Aflac cancer policy that pays me a dollar amount for each injection I have done in the oncologist's office. So I have gone that route. If I didn't have Aflac and had a high out of pocket for the injections, I would probably take Coop's advice and do the self injections of Velcade if my oncologist would allow it and also if my insurance would still cover it. I don't like thinking about costs for everything and dealing with multiple myeloma, but most of the drugs like Revlimid and Velcade are very expensive and having those covered as much as possible is part of this journey.
Castaway
I think that Coop described his self injections of Velcade and his reasons for doing them really well in the post you have linked to. Everyone probably feels differently about self injection. I am hoping to start my stem cell harvest and storage in December so I will be doing self injections of Neupogen. I live 200 miles from the hospital that will be doing the cell harvest, so I need to do the self injections starting at home and leading up to the harvest while staying at a hotel a few days before. As Lev commented, distance can be an issue for a lot of us.
I am on my wife's insurance and the wording in that policy for cancer treatments like Velcade injections show it to be in a setting like an oncologist's office or hospital. Not sure if they would cover self injections. My Velcade injections are $1612.00 each. You might want to look at your coverage and see how it covers those injections and see what they approve of as far as self injections go.
I live fairly close to my local oncologist so I go in there for my Velcade subQ injections. I also have an Aflac cancer policy that pays me a dollar amount for each injection I have done in the oncologist's office. So I have gone that route. If I didn't have Aflac and had a high out of pocket for the injections, I would probably take Coop's advice and do the self injections of Velcade if my oncologist would allow it and also if my insurance would still cover it. I don't like thinking about costs for everything and dealing with multiple myeloma, but most of the drugs like Revlimid and Velcade are very expensive and having those covered as much as possible is part of this journey.
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: Self-injecting Velcade - how common is it?
Hi LarryD,
It sounds like for Coop223, all of the stars aligned and self-injection of Velcade is ideal. However, as you point out, there were several posts with no mention that others were doing this, as it is not common.
While it is certainly feasible and likely preferred by some, I think the biggest barrier is the requirement for reconstitution (i.e., mixing the appropriate amount) that makes it a liability for the company (Millennium, with whom I have spoken), the insurers, pharmacies, and doctors. While other drugs are certainly "mixed" at home, because this is cytotoxic (cell-killing) therapy, the dosing implications are significant. Therefore, I would guess that patients who have pursued this may have come to a hard stop – either by their doctor, insurer, pharmacy, hospital, etc.
That being said, for the appropriate individual who gets trained and understands the implications, and whose doctor and insurance company supports it, I think it can be very beneficial.
Best,
Heather Landau
It sounds like for Coop223, all of the stars aligned and self-injection of Velcade is ideal. However, as you point out, there were several posts with no mention that others were doing this, as it is not common.
While it is certainly feasible and likely preferred by some, I think the biggest barrier is the requirement for reconstitution (i.e., mixing the appropriate amount) that makes it a liability for the company (Millennium, with whom I have spoken), the insurers, pharmacies, and doctors. While other drugs are certainly "mixed" at home, because this is cytotoxic (cell-killing) therapy, the dosing implications are significant. Therefore, I would guess that patients who have pursued this may have come to a hard stop – either by their doctor, insurer, pharmacy, hospital, etc.
That being said, for the appropriate individual who gets trained and understands the implications, and whose doctor and insurance company supports it, I think it can be very beneficial.
Best,
Heather Landau
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Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Self-injecting Velcade - how common is it?
It's worked for me just fine. Easier than what diabetics have to do. Measuring is easy and I've had no problems. As I'm retired, money is an issue. For the 6 months I've been self injecting, I've saved approximately $2500 out of pocket. Money is an issue you also have to consider as cancer treatment is expensive, as you all know.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Self-injecting Velcade - how common is it?
Yes, Dr. Landau, I knew that the need to mix the as-supplied Velcade with saline and draw out the correct amount for the individual dose would be an issue. Not everyone can handle this, perhaps not even the majority of myeloma patients. But for those who can do it reliably, it can be a valuable option for increasing quality of life.
I have studied the procedure in the FDA-approved prescribing information for Velcade,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021602s040lbl.pdf
and it seems to me quite straightforward. Velcade is supplied as a powder, always with the same amount per vial (3.5 mg), and it's always mixed with the same amount of saline, so there is little risk for error in that step. Then the correct amount must be drawn for the dose, and the remainder must be discarded. The volume needed for the individual should be calculated by the doctor or pharmacy, precluding mistakes in arithmetic by the patient.
So the main thing that requires special care and a bit of skill is getting the right amount into the syringe. At many clinics, one person does the measurement and another checks it, for safety; this same procedure is possible at home if the patient has a competent caregiver.
Apparently self-injection of Velcade is uncommon, but I think it's an option that most clinics should consider offering, at least to selected patients.
Regards,
Larry
I have studied the procedure in the FDA-approved prescribing information for Velcade,
http://www.accessdata.fda.gov/drugsatfda_docs/label/2014/021602s040lbl.pdf
and it seems to me quite straightforward. Velcade is supplied as a powder, always with the same amount per vial (3.5 mg), and it's always mixed with the same amount of saline, so there is little risk for error in that step. Then the correct amount must be drawn for the dose, and the remainder must be discarded. The volume needed for the individual should be calculated by the doctor or pharmacy, precluding mistakes in arithmetic by the patient.
So the main thing that requires special care and a bit of skill is getting the right amount into the syringe. At many clinics, one person does the measurement and another checks it, for safety; this same procedure is possible at home if the patient has a competent caregiver.
Apparently self-injection of Velcade is uncommon, but I think it's an option that most clinics should consider offering, at least to selected patients.
Regards,
Larry
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LarryD - Name: Larry D'Addario
- Who do you know with myeloma?: wife
- When were you/they diagnosed?: September 2012
- Age at diagnosis: 65
Re: Self-injecting Velcade - how common is it?
Interesting article related to this subject. I know if I ever have to take Velcade in the future that I would look into this option.
A Lassalle et al, "Home administration of bortezomib in multiple myeloma is cost-effective and is preferred by patients compared with hospital administration: results of a prospective single-center study," Annals of Oncology, November 2015 (abstract)
Related forum thread:
"New study about self-administering Velcade at home" (started Jan 9, 2016)
A Lassalle et al, "Home administration of bortezomib in multiple myeloma is cost-effective and is preferred by patients compared with hospital administration: results of a prospective single-center study," Annals of Oncology, November 2015 (abstract)
Related forum thread:
"New study about self-administering Velcade at home" (started Jan 9, 2016)
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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