› Forums › Caregiver Community › Caregiver looking for some advice about interferon side effects
- This topic has 18 replies, 8 voices, and was last updated 13 years, 8 months ago by
ockelly.
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- August 30, 2011 at 3:07 am
Hi. I'm new to all of this and I have a few questions maybe you folks can help with. Been scanning this forum, but not seeing the info I'm looking for.
My wife is recently diagnosed with Stage3A. She had a positive mole removed in early June. The follow up sentinal lymph node (3 nodes sampled) came up positive for microscopic growth. She then had all 31 nodes removed from that armpit – all were negative and the PET was too.
Hi. I'm new to all of this and I have a few questions maybe you folks can help with. Been scanning this forum, but not seeing the info I'm looking for.
My wife is recently diagnosed with Stage3A. She had a positive mole removed in early June. The follow up sentinal lymph node (3 nodes sampled) came up positive for microscopic growth. She then had all 31 nodes removed from that armpit – all were negative and the PET was too.
We are looking at starting interferon next week. She will be getting the low dose regime from the start – no high dose IV – or at least that's how I understand it. Meeting with the oncology team this week and I'll get that clarified.
Problem is that my work takes me out of town a bit and I don't want to leave her to deal with side effects and kids etc on her own, especially at the start of the treatment, and I'm supposed to go out for a few days next week. I can't tell if I can safely leave the house to get groceries let alone leave town for 3 days.
Reading these forum postings, it looks like pretty much everybody taking the stuff feels worse than terrible. Can anybody say how soon she will start to feel it? Does it hit you after the first one, or does it take a few to build up? Can I be away at all during this beginning period or do we need to plan on her being incapacitated? Will it hit her immediately or does it kind of creep up? How long should we expect it to last after the first dose – hours or days?
Any advice is welcome, thanks
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- August 30, 2011 at 4:25 am
Welcome to the board. It has been slow lately, we have a lot of East coast members and I'm sure they've been busy with the storm. Hopefully some of the others will help you out.
I've never taken interfuron. It is now FDA approved to take it 2 different ways. One way is the high dose month (infusions at the Dr office daily) and then 11 months low dose. The other way is a lower dose (it's called pegulated interfuron) and it's over 5 years. From what I've read from others comments is that those taking the high dose feel it after the first dose – within hours.
You don't say how old your children are, that could make a difference. There are some on the board that have had very few side effects and have continued working, others have a difficult time. I don't think there is a way to determine how your wife will feel.
I would be prepared for the worse. Make plans for family or friends to check in and take the kids for the few days that you have to be away. Hopefully that won't be needed. Many do the infusion late in the day and then sleep away the worse of the side effects.
I hope your wife does well,
Linda
Stage IV since 06, currently NED
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- August 30, 2011 at 4:25 am
Welcome to the board. It has been slow lately, we have a lot of East coast members and I'm sure they've been busy with the storm. Hopefully some of the others will help you out.
I've never taken interfuron. It is now FDA approved to take it 2 different ways. One way is the high dose month (infusions at the Dr office daily) and then 11 months low dose. The other way is a lower dose (it's called pegulated interfuron) and it's over 5 years. From what I've read from others comments is that those taking the high dose feel it after the first dose – within hours.
You don't say how old your children are, that could make a difference. There are some on the board that have had very few side effects and have continued working, others have a difficult time. I don't think there is a way to determine how your wife will feel.
I would be prepared for the worse. Make plans for family or friends to check in and take the kids for the few days that you have to be away. Hopefully that won't be needed. Many do the infusion late in the day and then sleep away the worse of the side effects.
I hope your wife does well,
Linda
Stage IV since 06, currently NED
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- August 30, 2011 at 5:33 am
Welcome to our forum. I feel that although some people are able to handle interferon treatment with minimal problems, some people do have severe side effects.
Interferon is a very old drug that has a controversial history in its use as a melanoma treatment. Unfortunately, there is no way to be certain how someone will respond to it or if it will be effective according to one's expectations.
Melanoma research is advancing rapidly, and I urge you to look at the newer treatments that your wife may be eligible for. Recently there have been two new drugs approved by the FDA for melanoma, and there are others being tested in clinical trials.
If you would like more info regarding new therapies, please don't hesitate to ask.
Hope this helps.
Frank from Australia
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- August 30, 2011 at 5:33 am
Welcome to our forum. I feel that although some people are able to handle interferon treatment with minimal problems, some people do have severe side effects.
Interferon is a very old drug that has a controversial history in its use as a melanoma treatment. Unfortunately, there is no way to be certain how someone will respond to it or if it will be effective according to one's expectations.
Melanoma research is advancing rapidly, and I urge you to look at the newer treatments that your wife may be eligible for. Recently there have been two new drugs approved by the FDA for melanoma, and there are others being tested in clinical trials.
If you would like more info regarding new therapies, please don't hesitate to ask.
Hope this helps.
Frank from Australia
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- August 30, 2011 at 6:26 am
Hi Lizard… My husband is in his 7th month of Interferon. In most cases the first doses of Interferon cause the most dramatic side effects. Most patients will have severe rigors (shaking) and a high fever somewhere between 2-5 hours after the 1st and second doses. After those first few doses most patients can prevent a fever by premedicating with tylenol and advil.
Some do have to stop treatment due to side effects but many feel the treatment is tolerable (fatigue and other vague discomforts). For many, including my husband, it is the only treatment option besides watching and waiting. We needed to feel that we were actively going after the disease. Also, we agreed that if he ever has a recurrence we couldn't handle having to ask… what if? So here we are. There are many people on this site who will talk negatively about Interferon. I don't know that they understand how painful their words are to those who have no other options.
Just do your homework and decide what is best for your family.. no turning back after that. I would be surprised if the month of high dose is skipped. I have always heard that the first month is the most important.
Good luck to you and your wife
Kelly O
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- August 30, 2011 at 6:26 am
Hi Lizard… My husband is in his 7th month of Interferon. In most cases the first doses of Interferon cause the most dramatic side effects. Most patients will have severe rigors (shaking) and a high fever somewhere between 2-5 hours after the 1st and second doses. After those first few doses most patients can prevent a fever by premedicating with tylenol and advil.
Some do have to stop treatment due to side effects but many feel the treatment is tolerable (fatigue and other vague discomforts). For many, including my husband, it is the only treatment option besides watching and waiting. We needed to feel that we were actively going after the disease. Also, we agreed that if he ever has a recurrence we couldn't handle having to ask… what if? So here we are. There are many people on this site who will talk negatively about Interferon. I don't know that they understand how painful their words are to those who have no other options.
Just do your homework and decide what is best for your family.. no turning back after that. I would be surprised if the month of high dose is skipped. I have always heard that the first month is the most important.
Good luck to you and your wife
Kelly O
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- August 30, 2011 at 10:42 am
Hi!
I did interferon March 09-March 10. If she does the IV's she really needs someone around during that month. I was not able to drive myself home from the infusions because they gave me drugs to help with the side effects that made me very tired. The side effects would kick in a couple hours after the IV's or shots. Once I was on the injections it was easier, but my daughters were a littlle older and didn't need constant attention. If you have small children be prepared to help a lot during that year. If you can't be there maybe she has a sibling or good friend to help? My sister drove me to almost all of my infusions so my husband could go to work.
Hope this helps.
Amy S. in Michigan
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- August 30, 2011 at 10:42 am
Hi!
I did interferon March 09-March 10. If she does the IV's she really needs someone around during that month. I was not able to drive myself home from the infusions because they gave me drugs to help with the side effects that made me very tired. The side effects would kick in a couple hours after the IV's or shots. Once I was on the injections it was easier, but my daughters were a littlle older and didn't need constant attention. If you have small children be prepared to help a lot during that year. If you can't be there maybe she has a sibling or good friend to help? My sister drove me to almost all of my infusions so my husband could go to work.
Hope this helps.
Amy S. in Michigan
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- August 30, 2011 at 1:15 pm
Thank you all very much for the info – hard to know what to expect and that makes it hard to make any plans. I will appreciate any more info on pegylated interfuron that folks can pass on. Looks like it may not be quite as tough as the high dose, but still pretty rough in the beginning.
Our kids are pretty self-suffficient, 14 and 9, so they will only really need driving and homework help, otherwise they pitch in. Mostly I'm just trying to plan things so that I won't be out of town and her feeling like she's been run over by a truck as so many people have described with this drug.
Thanks again, take care, see you
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- August 30, 2011 at 1:15 pm
Thank you all very much for the info – hard to know what to expect and that makes it hard to make any plans. I will appreciate any more info on pegylated interfuron that folks can pass on. Looks like it may not be quite as tough as the high dose, but still pretty rough in the beginning.
Our kids are pretty self-suffficient, 14 and 9, so they will only really need driving and homework help, otherwise they pitch in. Mostly I'm just trying to plan things so that I won't be out of town and her feeling like she's been run over by a truck as so many people have described with this drug.
Thanks again, take care, see you
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- August 30, 2011 at 1:28 pm
Although I can't help you with any tips right now, I'm starting pegylated interferon on Friday this week, and have many of the same questions as you regarding the effects and how much help I'll need (and whether I can let my hubby go out of town too). I can give you a blow-by-blow review of how it affects me, just a few days ahead of your wife, but of course, her reactions may be quite different from mine.
In any case, I wish you good luck with your journey and hope that it doesn't disrupt things for you too badly.
Elisa
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- August 30, 2011 at 1:28 pm
Although I can't help you with any tips right now, I'm starting pegylated interferon on Friday this week, and have many of the same questions as you regarding the effects and how much help I'll need (and whether I can let my hubby go out of town too). I can give you a blow-by-blow review of how it affects me, just a few days ahead of your wife, but of course, her reactions may be quite different from mine.
In any case, I wish you good luck with your journey and hope that it doesn't disrupt things for you too badly.
Elisa
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- August 31, 2011 at 6:40 pm
Hi Lizard,
I did the high dose and then the 11 months low peg dose. Keep in mind everyone is different, but I think you wife will be okay since your kids are so much older. My daughter was 6 months old at the time so that would have been too hard for me to handle by myself. She's going to be tired, easily winded, have nausea, and headaches probably. I had all that but I think I handled it well as I was able to work full time while doing my shots.
Make sure she drinks a TON of water all the time, has Ibuprofen for joint pain, tylenol for headaches, eats lots of small meals, drinks smoothies with protein powder if she is losing weight, and make the kids clean the house! She should be fine driving. I'd have some meals made in advance for your kids when you are out of town or have neighbors bring meals over those nights.
Good luck to you and your family! I hope all goes smoothly.
Tracy
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- August 31, 2011 at 6:40 pm
Hi Lizard,
I did the high dose and then the 11 months low peg dose. Keep in mind everyone is different, but I think you wife will be okay since your kids are so much older. My daughter was 6 months old at the time so that would have been too hard for me to handle by myself. She's going to be tired, easily winded, have nausea, and headaches probably. I had all that but I think I handled it well as I was able to work full time while doing my shots.
Make sure she drinks a TON of water all the time, has Ibuprofen for joint pain, tylenol for headaches, eats lots of small meals, drinks smoothies with protein powder if she is losing weight, and make the kids clean the house! She should be fine driving. I'd have some meals made in advance for your kids when you are out of town or have neighbors bring meals over those nights.
Good luck to you and your family! I hope all goes smoothly.
Tracy
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- August 31, 2011 at 10:12 pm
http://www.projectsinknowledge.com/init/G/1628/1628-Handbook.pdf
This is
S I D E E F F E C T S M A N A G E M E N T H A N D B O O K
We are pleased to provide you with this Care and Counsel II Side Effects
Management Handbook, which contains comprehensive information about the side
effects of peginterferon/ribavirin combination therapy. Practical recommendations
are provided for both prevention and management of these side effects. Strategies
include important points for patient education, nonpharmacologic management
approaches, and adjuvant therapies that are helpful in alleviating side effects.**************************************
While originally written for hepatitis C patients on interferon, it's infomation is valid for interferon patients.
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- August 31, 2011 at 10:12 pm
http://www.projectsinknowledge.com/init/G/1628/1628-Handbook.pdf
This is
S I D E E F F E C T S M A N A G E M E N T H A N D B O O K
We are pleased to provide you with this Care and Counsel II Side Effects
Management Handbook, which contains comprehensive information about the side
effects of peginterferon/ribavirin combination therapy. Practical recommendations
are provided for both prevention and management of these side effects. Strategies
include important points for patient education, nonpharmacologic management
approaches, and adjuvant therapies that are helpful in alleviating side effects.**************************************
While originally written for hepatitis C patients on interferon, it's infomation is valid for interferon patients.
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- September 1, 2011 at 4:24 am
Lizard,
I don'thave 1st hand experience with peg interferon but I am a nurse and work with a group of docs who give it for hepatitis. They often mention the side effects as hard to tolerate (lots of mood issues, nausea, fatigue, etc)… similar to regular interferon.
My 2 cents after just hitting the half way point in my husband's year. We are counting the weeks and are so happy to be more than half way there. Not sure how long the Peg tx is but I remember hearing it can be many years. Think long and hard about the length of treatment before making your decision.
Good luck Kelly
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- September 1, 2011 at 4:24 am
Lizard,
I don'thave 1st hand experience with peg interferon but I am a nurse and work with a group of docs who give it for hepatitis. They often mention the side effects as hard to tolerate (lots of mood issues, nausea, fatigue, etc)… similar to regular interferon.
My 2 cents after just hitting the half way point in my husband's year. We are counting the weeks and are so happy to be more than half way there. Not sure how long the Peg tx is but I remember hearing it can be many years. Think long and hard about the length of treatment before making your decision.
Good luck Kelly
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