› Forums › General Melanoma Community › 1st day Interferon Update!! :)
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mombase.
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- August 16, 2011 at 5:23 pm
Hi all!!
I mainly wanted to post for those of you getting ready to do Interferon. I saw Donna is feeling very anxious and nervous about starting. I saw some people have said things to her that is seriously uncalled for. These things were also said to me. It only created more fear where there was already enough fear! If I could give any advice to those of you thinking about Interferon or getting ready to do it, please don’t listen to anyone but your own heart and your doctor! Having said that, here’s my first experience.
It started on Saturday getting my PICC line installed. The picc line doesn’t hurt going in!! They sent me over to the hospital to get a chest xray to be sure the line was put in right. The process only took about 2 hours total, it’s a very sterile process. The PICC line will only stay in for 1 month during high dose then come out.
My first infusion was yesterday. The infusion center in my area is comfortable with tv’s and headphones. You can bring in your laptop or a book, they have a refreshment center with soda’s, water, and snacks. The nurses have been doing this for years and make you feel really comfortable.
They gave me 2 tylenol orally, then hooked me up to the IV for the saline, anti-nausea, and benedryl medicine. Next is the Interferon. I felt a little sleepy from the benedryl. They gave me 40 million units of Interferon. I felt fine leaving the facility and went to the store to get some water and soup. Bad idea! I should have went straight home because in the check out line I started feeling nauseated. Not bad but I wanted out of there! I made it home and walked straight in to bed. The side effects took about 1 1/2 hours to kick in.
I had a fever of 101.8 at the highest, chills, and body aches. This lasted about 5-6 hours but I was sleeping most of the time. I slept about 12 hours last night and woke up with body aches and a slight headache. The chills and fever were gone.
I go back in today at 2pm. This time I’m doing my errands before I go in so I can come home and lay down.
I would have to say that all and all it wasn’t as bad as I thought it was going to be. I have a weird taste in my mouth, that was the first thing I noticed. I’m taking everyones advice about drinking plenty water and I got some bananas.
This morning I’ve been playing frisbee with my dog and getting ready to take a shower to do it all over again.They keep a close eye on you with blood tests every week for the first month and once a month after that so if it becomes too hard on your body they’ll reduce the dosage.
Denise
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- August 16, 2011 at 5:48 pm
Hi Denise,
I can see how the weekend posts made things worse for those of you starting new treatments.
I am glad that is over. Keep your chin up and keep on the positive side of this treatment. Seems like it was workable for you and I wish you luck and am praying and hoping this will help you kick mel to the curb.
I think posting your feelings will help others also..
Judy wife if Gene Stage IV
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- August 16, 2011 at 5:48 pm
Hi Denise,
I can see how the weekend posts made things worse for those of you starting new treatments.
I am glad that is over. Keep your chin up and keep on the positive side of this treatment. Seems like it was workable for you and I wish you luck and am praying and hoping this will help you kick mel to the curb.
I think posting your feelings will help others also..
Judy wife if Gene Stage IV
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- August 16, 2011 at 6:27 pm
Denise, I'm so glad you posted this update, and so glad that things went well for you yesterday. Hope that continues!
So how is the PICC line now that it's in? Is it uncomfortable? My surgeon's PA told me this morning that it was a little uncomfortable, but definitely better than all those needle sticks.
You've helped me enormously by posting this. I know that my reactions could be different, but now I have more of a concrete idea of what to expect, so thanks for that!
Donna
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- August 16, 2011 at 6:27 pm
Denise, I'm so glad you posted this update, and so glad that things went well for you yesterday. Hope that continues!
So how is the PICC line now that it's in? Is it uncomfortable? My surgeon's PA told me this morning that it was a little uncomfortable, but definitely better than all those needle sticks.
You've helped me enormously by posting this. I know that my reactions could be different, but now I have more of a concrete idea of what to expect, so thanks for that!
Donna
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- August 16, 2011 at 7:10 pm
Hi Donna,
Your so welcome! I know I was scared too! I’m not looking forward to going back today but at least I know now what to expect. Cyndy who started yesterday as well had a headache and body aches, no fever or chills. I think her dosage was 30-35 million.
I just took a bath and had to tape a plastic bag over the PICC line. It’s on my upper arm inside. I wouldn’t say it’s uncomfortable, more like a nuisance. It’s definately better to get the picc line put in! Other wise they’d have to tap your vein everyday and it could collapse your veins! Also the medicine is strong so with the catheder in your main artery it dilutes the medicine with your blood. You can’t feel the catheder going in or while it’s in.
You’ll be ok, let me know if you have any other questions.Denise
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- August 16, 2011 at 7:10 pm
Hi Donna,
Your so welcome! I know I was scared too! I’m not looking forward to going back today but at least I know now what to expect. Cyndy who started yesterday as well had a headache and body aches, no fever or chills. I think her dosage was 30-35 million.
I just took a bath and had to tape a plastic bag over the PICC line. It’s on my upper arm inside. I wouldn’t say it’s uncomfortable, more like a nuisance. It’s definately better to get the picc line put in! Other wise they’d have to tap your vein everyday and it could collapse your veins! Also the medicine is strong so with the catheder in your main artery it dilutes the medicine with your blood. You can’t feel the catheder going in or while it’s in.
You’ll be ok, let me know if you have any other questions.Denise
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- August 16, 2011 at 7:12 pm
Denise,
I'm glad you are doing so well! I know it's not easy and some days will be better than others. I didn't even run errands during that month. I pretty much just slept when I wasn't getting my infusions. What a helpful thing for you to post your first day! It will help those starting soon so much to know what to expect. I remember getting that IV and wondering when will it hit me? You are right it's about one or two hours later. Just remember take medication when you need it. No need to tough things out.
Good Luck with the rest of your week!
Amy S. in Michigan
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- August 16, 2011 at 7:12 pm
Denise,
I'm glad you are doing so well! I know it's not easy and some days will be better than others. I didn't even run errands during that month. I pretty much just slept when I wasn't getting my infusions. What a helpful thing for you to post your first day! It will help those starting soon so much to know what to expect. I remember getting that IV and wondering when will it hit me? You are right it's about one or two hours later. Just remember take medication when you need it. No need to tough things out.
Good Luck with the rest of your week!
Amy S. in Michigan
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- August 16, 2011 at 7:21 pm
Denise,
I'm so happy that you're finding the treatment tolerable. Please make sure you drink PLENTY of water. I noticed a big difference on days that I didn't drink enough. Also, see if you can get your infusions a little later in the day. That will leave you with more time for errands/activities and then you can go straight to bed.
The Interferon formula –
Positive attitude + PLENTY of water + whatever you can eat + 2 Tylenol before bed + plenty of sleep = a good chance of keeping in going!
Some people do all of the above and still have difficulty…but it's a good starting point.
Best of luck to you that your treatments contintue to be tolerable!
Tricia
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- August 16, 2011 at 7:38 pm
Thanks Tricia and Amy! It’s been your earlier posts that have helped me! I’m definately drinking lots of water and called my doc earlier for some sleeping aids. I had a little trouble sleeping last night but I think it was anxiety.I’ll try to post more later Donna. I’m not sure if you got my message on your earlier post. If your on Facebook you can look me up there, Denise Orff Kirley. 🙂
Denise 🙂
Thanks everyone for the support and encouragment!! 🙂 -
- August 16, 2011 at 7:38 pm
Thanks Tricia and Amy! It’s been your earlier posts that have helped me! I’m definately drinking lots of water and called my doc earlier for some sleeping aids. I had a little trouble sleeping last night but I think it was anxiety.I’ll try to post more later Donna. I’m not sure if you got my message on your earlier post. If your on Facebook you can look me up there, Denise Orff Kirley. 🙂
Denise 🙂
Thanks everyone for the support and encouragment!! 🙂
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- August 16, 2011 at 7:21 pm
Denise,
I'm so happy that you're finding the treatment tolerable. Please make sure you drink PLENTY of water. I noticed a big difference on days that I didn't drink enough. Also, see if you can get your infusions a little later in the day. That will leave you with more time for errands/activities and then you can go straight to bed.
The Interferon formula –
Positive attitude + PLENTY of water + whatever you can eat + 2 Tylenol before bed + plenty of sleep = a good chance of keeping in going!
Some people do all of the above and still have difficulty…but it's a good starting point.
Best of luck to you that your treatments contintue to be tolerable!
Tricia
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- August 17, 2011 at 12:56 am
Denise, and Donna
I am happy that your interferon treatment is going well. Your posts have really helped me as well as I am about two weeks off from having the same treatment. I have a good idea as to what to expect. I look forward to continue to hear from you on your treatments. Like everyone hear I pray for us.
I read some of the posts from the weekend as well. My decision came down to I would rather do something than nothing at all. Like many of us, I have something to live for, I have to beat this cancer for my family.
Thanks,
Mike
Stage 2c
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- August 17, 2011 at 12:56 am
Denise, and Donna
I am happy that your interferon treatment is going well. Your posts have really helped me as well as I am about two weeks off from having the same treatment. I have a good idea as to what to expect. I look forward to continue to hear from you on your treatments. Like everyone hear I pray for us.
I read some of the posts from the weekend as well. My decision came down to I would rather do something than nothing at all. Like many of us, I have something to live for, I have to beat this cancer for my family.
Thanks,
Mike
Stage 2c
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- August 17, 2011 at 1:08 am
I'm so glad you posted your first treatment experience. Like they have said, everybody responds differently, but yours is pretty similar to others. Like others have mentioned, getting the infusions later will help. However, my husband chose to do it first thing in the morning – once his body adjusted, he wouldn't get side effects until late afternoon, and he was a morning person anyway (did his infusions at 6:30 am!)
I'm wishing you all the best Denise!!
Maria
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- August 17, 2011 at 2:27 am
Day 2, about the same as yesterday. Fever of 101, severe chills and shivering and body aches. I got some sleeping pills from the doc today to help me sleep through the side effects. The first day I had some lunch before treatment, today I had a chicken sandwich before and came home to some chicken noodle soup before the side effects kicked in. It’s weird that this stuff makes your regular aches and pains hurt more. I bite my nails and bit them today really bad, Note to self…don’t bite your nails!! My fingers felt tingly and like they were asleep. Also my incision area has been painful, as well as my knee and shoulder I’ve had problems with. I guess it has something to do with the Interferon attacking bad cells. If anyone knows why this is please let me know! Tonight I’m more tolerable to the side effects. I have had mild nausea but haven’t lost it yet. I also have pills for that. Only 18 more high dose to go!! It’ll be over before you know it!!
@ Mike…I read your profile and see that your tumor was ulcerated as well. When I went to San Fran to the Melanoma center they said they don’t normally recommend interferon but with ulcerated tumors it has been documented to help more. My second cousin had a lage ulcerated tumor on her chest as well and did nothing. One year later she passed out at work and the melanoma had spread so far that there wasn’t much for her to do. She did chemo as well as interferon and passed away less than a year later, she was only 22! The way I look at is if I do nothing and it comes back then I’m going to kick myself for not doing anything. If I do it and it comes back then at least I did something. Like I told Donna go with your heart and what you feel is best for you and your family.
Do you start on 8/29? I’ll keep posting to update the daily effects.
Best of luck to you!! Take all the advice others are giving about later infusions, plenty of water, and eat when you can.
Thanks so much Maria. I just took a sleeping pill so I better get going!!
Denise -
- August 17, 2011 at 2:27 am
Day 2, about the same as yesterday. Fever of 101, severe chills and shivering and body aches. I got some sleeping pills from the doc today to help me sleep through the side effects. The first day I had some lunch before treatment, today I had a chicken sandwich before and came home to some chicken noodle soup before the side effects kicked in. It’s weird that this stuff makes your regular aches and pains hurt more. I bite my nails and bit them today really bad, Note to self…don’t bite your nails!! My fingers felt tingly and like they were asleep. Also my incision area has been painful, as well as my knee and shoulder I’ve had problems with. I guess it has something to do with the Interferon attacking bad cells. If anyone knows why this is please let me know! Tonight I’m more tolerable to the side effects. I have had mild nausea but haven’t lost it yet. I also have pills for that. Only 18 more high dose to go!! It’ll be over before you know it!!
@ Mike…I read your profile and see that your tumor was ulcerated as well. When I went to San Fran to the Melanoma center they said they don’t normally recommend interferon but with ulcerated tumors it has been documented to help more. My second cousin had a lage ulcerated tumor on her chest as well and did nothing. One year later she passed out at work and the melanoma had spread so far that there wasn’t much for her to do. She did chemo as well as interferon and passed away less than a year later, she was only 22! The way I look at is if I do nothing and it comes back then I’m going to kick myself for not doing anything. If I do it and it comes back then at least I did something. Like I told Donna go with your heart and what you feel is best for you and your family.
Do you start on 8/29? I’ll keep posting to update the daily effects.
Best of luck to you!! Take all the advice others are giving about later infusions, plenty of water, and eat when you can.
Thanks so much Maria. I just took a sleeping pill so I better get going!!
Denise -
- August 17, 2011 at 2:55 am
Denise,
The planned start date is for 8/29 correct. It maybe delayed a day or two after that date to get a second opinion. My initial site on my leg was 7mm in depth and ulcerated. It was about the size of a number 2 pencil eraser. There was a moderate repsonse of white blood cells in the tumor. It basically grew in a spot on my leg where I had an existing mole.
My doctors said I was very lucky the cancer did not go to my lymph nodes. At this point my doctors are trying to determine if a 2mm spot on lungs is cancer or something else(They feel at this point it is likely something else but want to be sure). At this point I have no cough or breathing issues.
A major reason I decided on interferon was that I read a earlier post from MichaelFL that contained a link to some data that interferon is a far more effective treatment on ulcerated tumors than non ulcerated ones. I hope to crush my cancer once and for all by this treatment.
Again I wish the best in your treatments and will be watching for both Yours and Donna's responses.
Thanks,
Mike
Stage 2c.
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- August 17, 2011 at 10:06 pm
Mike, I hope this thing on your lung is not melanoma!! Gosh how scary!!
Letus know when you find out!
I’m at the infusion center watching maury! This place is awesome!!
I had some back pain last night so today I bought a heating pad.
The nurse told me that my doctor will give me vicodin so tomorrow I’m making the call for that. Even though the side effects suck they are tolerable!! This will be #3 of 20 so only 17 more to go!! I’m looking forward to having the weekend off!
Denise -
- August 17, 2011 at 10:06 pm
Mike, I hope this thing on your lung is not melanoma!! Gosh how scary!!
Letus know when you find out!
I’m at the infusion center watching maury! This place is awesome!!
I had some back pain last night so today I bought a heating pad.
The nurse told me that my doctor will give me vicodin so tomorrow I’m making the call for that. Even though the side effects suck they are tolerable!! This will be #3 of 20 so only 17 more to go!! I’m looking forward to having the weekend off!
Denise -
- August 17, 2011 at 2:55 am
Denise,
The planned start date is for 8/29 correct. It maybe delayed a day or two after that date to get a second opinion. My initial site on my leg was 7mm in depth and ulcerated. It was about the size of a number 2 pencil eraser. There was a moderate repsonse of white blood cells in the tumor. It basically grew in a spot on my leg where I had an existing mole.
My doctors said I was very lucky the cancer did not go to my lymph nodes. At this point my doctors are trying to determine if a 2mm spot on lungs is cancer or something else(They feel at this point it is likely something else but want to be sure). At this point I have no cough or breathing issues.
A major reason I decided on interferon was that I read a earlier post from MichaelFL that contained a link to some data that interferon is a far more effective treatment on ulcerated tumors than non ulcerated ones. I hope to crush my cancer once and for all by this treatment.
Again I wish the best in your treatments and will be watching for both Yours and Donna's responses.
Thanks,
Mike
Stage 2c.
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- August 17, 2011 at 3:57 am
Denise,
Thanks for posting the updates on your experience. It's really helpful to read what you've gone through to help me prepare for my own start tomorrow. I'm glad to hear that you're taking it with a positive attitude and managing the side effects. I hope you're sleeping peacefully now and that the treatments continue to go alright.
Big, supportive hugs,
Elisa
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- August 18, 2011 at 2:47 pm
Day #3 was great!! I had absolutely NO side effects yesterday!! My fever only got to 99 which made me feel a little flush but other than that I felt great!! Today will be day #4 and I'm hoping it will be the same!! Maybe my body is getting used to it?!!
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- August 18, 2011 at 2:47 pm
Day #3 was great!! I had absolutely NO side effects yesterday!! My fever only got to 99 which made me feel a little flush but other than that I felt great!! Today will be day #4 and I'm hoping it will be the same!! Maybe my body is getting used to it?!!
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- August 17, 2011 at 3:57 am
Denise,
Thanks for posting the updates on your experience. It's really helpful to read what you've gone through to help me prepare for my own start tomorrow. I'm glad to hear that you're taking it with a positive attitude and managing the side effects. I hope you're sleeping peacefully now and that the treatments continue to go alright.
Big, supportive hugs,
Elisa
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- August 17, 2011 at 1:08 am
I'm so glad you posted your first treatment experience. Like they have said, everybody responds differently, but yours is pretty similar to others. Like others have mentioned, getting the infusions later will help. However, my husband chose to do it first thing in the morning – once his body adjusted, he wouldn't get side effects until late afternoon, and he was a morning person anyway (did his infusions at 6:30 am!)
I'm wishing you all the best Denise!!
Maria
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