Two shots per Interferon low-dose day?? :-(

This topic has 24 replies, 9 voices, and was last updated 13 years, 11 months ago by Vermont_Donna.

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- January 8, 2011 at 4:05 pm
- Quote
Melanoma Mom
Participant
Our 14 year old finished the month of high dose Interferon yesterday. Yay! He did very well, all things considered.

Our 14 year old finished the month of high dose Interferon yesterday. Yay! He did very well, all things considered.

On Monday he starts training and use of the needles to inject the lower- dose Interferon. I was surprised and disappointed to hear that he has to do TWO shots each time to get the correct amount injected. Have others had this situation? He is 6 feet tall and I know it is a ratio of medication using your weight and height. From my understanding, the use of "epi-pen-like" Interferon injections were discontinued in 2009 so we will have to mix the medication ourselves.

Just bummed for him …. expecting three shots a week and how we have doubled that. Please let me know if you have any further info regarding this. Our local children's oncology unit is great, but the Interferon is an unusual drug for them to deal with, since so few children get Melanoma. I'm wondering if I should contact our main oncologist at Dana-Farber?

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- - January 8, 2011 at 4:13 pm
  - Quote
  dian in spokane
  Participant
  I've been coming here since 2003 and I've never heard of this. not once. I guess it could be completely normal, but I've never heard of it.
  
  dian
  - January 8, 2011 at 4:41 pm
    
    Quote
    Becky
    Participant
    
    When Ben first started low dose it was the epi pens. Then they discontinued them and he was sent vials (premixed) and syringes. He totally freaked becuase the needles looked huge to him. He wouldnt let us give him the shot but he had a block about doing it also. I called the pharmacy to try to find smaller needles. They said the smallest ones (like ones diabetics use) would have to be used twice becuase they couldnt draw enough med the first time. Well, that didnt go over very well either.
    
    Finally we managed to find a smaller needle (27 gauge? something like that) that he could use just once.
    
    So maybe they sent the small syringes/needles?
  - January 8, 2011 at 4:43 pm
    
    Quote
    Becky
    Participant
    
    I hit send too soon…but I am thinking becuase he is being seen at a Childrens hospital that is what happened?
    
    Also, see if you can get the pre mixed vials, much easier I would think.
  - January 8, 2011 at 4:43 pm
    
    Quote
    Becky
    Participant
    
    I hit send too soon…but I am thinking becuase he is being seen at a Childrens hospital that is what happened?
    
    Also, see if you can get the pre mixed vials, much easier I would think.
  - January 8, 2011 at 6:00 pm
    
    Quote
    dian in spokane
    Participant
    
    well..that makes sense I guess. I never used the epi, I used single dose shots. But I did not have to mix my own, mine came preloaded, and I had to pick them up at my center once a month. They did it that way so we could bill them as 'treatment' It was kind of convoluted.
    
    But.. maybe it's the whole needle size thing!
  - January 8, 2011 at 6:00 pm
    
    Quote
    dian in spokane
    Participant
    
    well..that makes sense I guess. I never used the epi, I used single dose shots. But I did not have to mix my own, mine came preloaded, and I had to pick them up at my center once a month. They did it that way so we could bill them as 'treatment' It was kind of convoluted.
    
    But.. maybe it's the whole needle size thing!
  - January 8, 2011 at 4:41 pm
    
    Quote
    Becky
    Participant
    
    When Ben first started low dose it was the epi pens. Then they discontinued them and he was sent vials (premixed) and syringes. He totally freaked becuase the needles looked huge to him. He wouldnt let us give him the shot but he had a block about doing it also. I called the pharmacy to try to find smaller needles. They said the smallest ones (like ones diabetics use) would have to be used twice becuase they couldnt draw enough med the first time. Well, that didnt go over very well either.
    
    Finally we managed to find a smaller needle (27 gauge? something like that) that he could use just once.
    
    So maybe they sent the small syringes/needles?
- - January 8, 2011 at 4:13 pm
  - Quote
  dian in spokane
  Participant
  I've been coming here since 2003 and I've never heard of this. not once. I guess it could be completely normal, but I've never heard of it.
  
  dian
- - January 8, 2011 at 5:05 pm
  - Quote
  Melanoma Mom
  Participant
  Ugggg. Now I am definitely going to contact our Oncologist at Dana-Farber. If he could just do one shot – and use pre-mixed meds, I think the next 11 months would be easier for all of us!
  
  Keep the comments coming and I will let you know what I find out.
- - January 8, 2011 at 5:05 pm
  - Quote
  Melanoma Mom
  Participant
  Ugggg. Now I am definitely going to contact our Oncologist at Dana-Farber. If he could just do one shot – and use pre-mixed meds, I think the next 11 months would be easier for all of us!
  
  Keep the comments coming and I will let you know what I find out.
- - January 8, 2011 at 5:31 pm
  - Quote
  MaryBZ
  Participant
  I used Intron-A (interferon) May-June of 2009. It is like an epi-pen so only one shot each of the 3 days was necessary. I did just visit the Intron-A web site and it is still available, however, it appears it is used in patients 18 years and older. Not sure why?
  
  Mary
- - January 8, 2011 at 5:31 pm
  - Quote
  MaryBZ
  Participant
  I used Intron-A (interferon) May-June of 2009. It is like an epi-pen so only one shot each of the 3 days was necessary. I did just visit the Intron-A web site and it is still available, however, it appears it is used in patients 18 years and older. Not sure why?
  
  Mary
- - January 8, 2011 at 7:34 pm
  - Quote
  akls
  Participant
  I was 6 months into the "pens" when they stopped making them. I had to do my doses after that in two injections. We used 27 gage needles and they weren't bad. Just make sure you rotate the injections sites. I don't know why they stopped making the pens or if they ever plan to bring them back.
  
  Amy S. in Michigan
- - January 8, 2011 at 7:34 pm
  - Quote
  akls
  Participant
  I was 6 months into the "pens" when they stopped making them. I had to do my doses after that in two injections. We used 27 gage needles and they weren't bad. Just make sure you rotate the injections sites. I don't know why they stopped making the pens or if they ever plan to bring them back.
  
  Amy S. in Michigan
- - January 8, 2011 at 7:39 pm
  - Quote
  Phil S
  Participant
  Great, glad your son finished his high dose month with minimal difficulties. My husband is in his eighth month of interferon, and he mixes his medication. The way our medical insurance worked for coverage was that we had to get the Interferon from a Florida based drug company and they send us a shipment monthly to our house. You are right that the amount of interferon he takes depends on his size (weight, etc.), but our local doctor felt that 18MIU Intron A (the amount in one vial from our drug company) was close to the amount Phil should get in each injection three times per week. So, he only has to mix and take one shot three times per week, but since they may want your son at a higher dose, he may have to mix the drugs from two vials. Best of luck with everything and God Bless! Valerie (Phil's wife)
- - January 8, 2011 at 7:39 pm
  - Quote
  Phil S
  Participant
  Great, glad your son finished his high dose month with minimal difficulties. My husband is in his eighth month of interferon, and he mixes his medication. The way our medical insurance worked for coverage was that we had to get the Interferon from a Florida based drug company and they send us a shipment monthly to our house. You are right that the amount of interferon he takes depends on his size (weight, etc.), but our local doctor felt that 18MIU Intron A (the amount in one vial from our drug company) was close to the amount Phil should get in each injection three times per week. So, he only has to mix and take one shot three times per week, but since they may want your son at a higher dose, he may have to mix the drugs from two vials. Best of luck with everything and God Bless! Valerie (Phil's wife)
- - January 8, 2011 at 11:35 pm
  - Quote
  triciad
  Participant
  Congratulations on finishing the high dose! I just finished my 11 months of low dose October 30th! When I began last October, there was a recall on the "epi pens" of interferon. Of course, that's what the hospital trained me on, so I had a friend who is a nurse train me on the injections. My dosage was 15 mu 3 times a week. At first, I was doing the two shots 3 times a week using a 21 gauge and very long needle…I think it was 1 1/2 inches long. I was sick throwing away so much medicine because I only needed 15 mu…they came in 10 mu vials. Then my insurance company insisted I do "mail order." The surprise was that their supplier had 18mu vials, so I didn't need to use 2 vials anymore. Also, the insurance company was horrified that I was using a 21 gauge long syringe. They supplied me with 25 G 5/8 syringe to mix/draw down the interferon and a 27 G 1/2 to give the shot. I did, however, have to mix the interferon powder with the liquid. It wasnt' so bad.
  
  My point is that my oncologist is the one who wrote the prescription for the 21 G long needles. My insurance company pharmacist is the one who saved me the added pain of larger, unnecessary syringes. More importantly, different suppliers have different doses available. Ask your pharmacist about looking into larger vials of interferon.
  
  Best of luck to you and your son throughout the interferon journey. Please let me know if i can help!
  
  Tricia
  - January 9, 2011 at 5:44 pm
    
    Quote
    Jan in OC
    Participant
    
    My husband was in the middle of his first month (in 2009) on self injections of Intron-A when the company recalled the "epi-pens". The drug must be kept refrigerated and they were having stability issues with the pens. We got the interferon from a mail order company in Florida. It came premixed in vials of 18 mu (that was his dosage every shot, so it worked out well). The original needles were hugh, but they did supply smaller needles (25 or 27 gauge). However, the syringes were smaller and did not hold all of one dose, so 2 shots were required each time.
    
    Talk to your pharmacy and the doctor. They should help with this. Good luck with Interferon.
    
    Jan
  - January 9, 2011 at 7:13 pm
    
    Quote
    Melanoma Mom
    Participant
    
    I am guessing that we will end up with two syringes per dose. Bummer! I didn't realize that this happened. Our Pediatric Oncologist at Dana-Farber is talking with the Melanoma specialists and getting back to me tomorrow (Monday), but I'm not expecting any change. They have supplied 27 gauge needles and the vials hold 20 mu.
    
    Tomorrow begins needle training with the home health nurse …. the fun never ends.
  - January 9, 2011 at 7:53 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    It is a big deal to take on all this medical stuff…you get so overwhelmed with the thoughts of what you need to do, have to do, want to do, to beat this cancer. Learning how to mix the interferon and then draw it up and then inject it is scary, novel, and so not what you thought your son's and your life would be like. But you will soon be old pros at doing just what you need to do, and will soon mix, draw up and give the injections without hardly a thought.
    
    I did 11 months of the epi-pen version of interferon…easy to do and it had a short needle. I then did 7 months of leukine…had to mix it, draw it up, change needles, all while keeping an ice pack on whichever thigh I was going to inject….I did it at bedtime and slept most of the effects of after taking two benedryl and two tylenol.
    
    It will get easier, take one step at a time. I hope your son is learning how to do this. It will not be hard for him either. I am glad he chose to go the 11 months of injections. Interferon is an immunotherapy and that will hopefully help your son's body to fight off any lingering melanoma cells.
    
    Best of luck,
    
    Vermont_Donna
    
    stage 3a
  - January 9, 2011 at 7:53 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Hi,
    
    It is a big deal to take on all this medical stuff…you get so overwhelmed with the thoughts of what you need to do, have to do, want to do, to beat this cancer. Learning how to mix the interferon and then draw it up and then inject it is scary, novel, and so not what you thought your son's and your life would be like. But you will soon be old pros at doing just what you need to do, and will soon mix, draw up and give the injections without hardly a thought.
    
    I did 11 months of the epi-pen version of interferon…easy to do and it had a short needle. I then did 7 months of leukine…had to mix it, draw it up, change needles, all while keeping an ice pack on whichever thigh I was going to inject….I did it at bedtime and slept most of the effects of after taking two benedryl and two tylenol.
    
    It will get easier, take one step at a time. I hope your son is learning how to do this. It will not be hard for him either. I am glad he chose to go the 11 months of injections. Interferon is an immunotherapy and that will hopefully help your son's body to fight off any lingering melanoma cells.
    
    Best of luck,
    
    Vermont_Donna
    
    stage 3a
  - January 9, 2011 at 7:13 pm
    
    Quote
    Melanoma Mom
    Participant
    
    I am guessing that we will end up with two syringes per dose. Bummer! I didn't realize that this happened. Our Pediatric Oncologist at Dana-Farber is talking with the Melanoma specialists and getting back to me tomorrow (Monday), but I'm not expecting any change. They have supplied 27 gauge needles and the vials hold 20 mu.
    
    Tomorrow begins needle training with the home health nurse …. the fun never ends.
  - January 9, 2011 at 5:44 pm
    
    Quote
    Jan in OC
    Participant
    
    My husband was in the middle of his first month (in 2009) on self injections of Intron-A when the company recalled the "epi-pens". The drug must be kept refrigerated and they were having stability issues with the pens. We got the interferon from a mail order company in Florida. It came premixed in vials of 18 mu (that was his dosage every shot, so it worked out well). The original needles were hugh, but they did supply smaller needles (25 or 27 gauge). However, the syringes were smaller and did not hold all of one dose, so 2 shots were required each time.
    
    Talk to your pharmacy and the doctor. They should help with this. Good luck with Interferon.
    
    Jan
- - January 8, 2011 at 11:35 pm
  - Quote
  triciad
  Participant
  Congratulations on finishing the high dose! I just finished my 11 months of low dose October 30th! When I began last October, there was a recall on the "epi pens" of interferon. Of course, that's what the hospital trained me on, so I had a friend who is a nurse train me on the injections. My dosage was 15 mu 3 times a week. At first, I was doing the two shots 3 times a week using a 21 gauge and very long needle…I think it was 1 1/2 inches long. I was sick throwing away so much medicine because I only needed 15 mu…they came in 10 mu vials. Then my insurance company insisted I do "mail order." The surprise was that their supplier had 18mu vials, so I didn't need to use 2 vials anymore. Also, the insurance company was horrified that I was using a 21 gauge long syringe. They supplied me with 25 G 5/8 syringe to mix/draw down the interferon and a 27 G 1/2 to give the shot. I did, however, have to mix the interferon powder with the liquid. It wasnt' so bad.
  
  My point is that my oncologist is the one who wrote the prescription for the 21 G long needles. My insurance company pharmacist is the one who saved me the added pain of larger, unnecessary syringes. More importantly, different suppliers have different doses available. Ask your pharmacist about looking into larger vials of interferon.
  
  Best of luck to you and your son throughout the interferon journey. Please let me know if i can help!
  
  Tricia