Caregiver looking for some advice about interferon side effects

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

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

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

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

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

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

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

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

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

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

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.

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.

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

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