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Interferon

bnp2
Posts: 2
Joined: Oct 2007

My daughter is still in the staging part for her metastatic melanoma. Probably late stage 3 or at least that is what we are hoping. Anyway, has anyone had experience with interferon? They are talking about 4 weeks of intravenous 5days on/2 days off. Then self injections 3 times a week. This is only preliminary idea for treatment until more tests are done. But she is very nervous about taking care of her 4 kids, going to work (secretary) and all her other endeavors. I told her I would ask some people that might have had experience with interferon.

Thanks in advance.

ralambe
Posts: 1
Joined: Oct 2007

yes i was on interferon after the first week of taking this med i had a vary bad reation had to go off i was do the same schedule that she has i was stage 4 ended up not replacing the interferon that has been a year now and still cancer free.

redhead40
Posts: 1
Joined: Oct 2007

I was on interferon for the same diagnosis. I did the month 5 days and 2 off and gave myself injections for a year. After much research I felt that this gave me the best chance for survival. Interferon is a very nasty drug and the side effects are brutal. The biggest side effect is drastic mood changes and fatigue. However with anti-depressants it can be diminished. Read everything you can on the drug and ask questions. Melanoma is hard disease and there are not alot of drugs to help treat it. I have 3 kids and work full time so I empathize with your daughter. When I went to the self injections I would make sure that I gave myself the injections before bedtime so that I would sleep through the majority of the side effects. It has been three years and I feel that I still made the right decision but it is a personal choice. I wish your daughter strength as she goes through this difficult time in her life

moolly
Posts: 1
Joined: Jan 2008

After I had a melanoma removed from my leg two years ago, the oncologist presented the only treatment that might help would be interferon. I took two doses intravenously and told them I would be better off dead. They told me that they didnt want me to take it in the first place. Another diagnostician said that he had never heard of interferon curing cancer either.
Another ploy of the major Drug companies to get rich and being able to pay druggists and and medical institutions etc at the expense of the patient at the expense of taxpayers.
Make a wise decision it is still your body. Having faith is the best cure.

murielh's picture
murielh
Posts: 4
Joined: Aug 2005

Depending on her case, interferon may not help. (It may not help anyway, but you know what I mean.) I was on it for only three days, when the doctors and I decided that my case would probably not benefit from the treatments.

Those three days were... unpleasant. It was like having the worst case of the flu I've ever had. Apparently, those side effects wear off and other ones kick in. I was glad to be off it, but if her case ends up pretty "serious," interferon is thought to stave off a relapse.

But as others said, research research research. Let us know what she decides.

saffire928
Posts: 1
Joined: Sep 2008

I too was diagnosed with Melanoma and am in the 12th week of doing the injections three times a week. The first month (the 4 weeks) intravenous was tolerable. Generally, I had the joint pain and fatigue and got a lot of sleep. One thing I asked them to do after my treatment was to keep me hydrated by giving me extra fluid bolus. I did have my days, however, I think I was pretty lucky. I work 40 plus hours a week and I probably missed about 3 total days from work. The injections I do three times a week and still experience the fatigue, but now I have some nausea and my hair is starting to thin out. The main thing is you have to remain positive, because it is real easy to feel sorry for yourself. I am lucky to have a great support group. Don't get me wrong it can be difficult to get through some days, but is tolerable.

skinner's picture
skinner
Posts: 15
Joined: Aug 2007

I have stage 4 and then have brain cancer; One dr. now says stage 5 and another says he will not stage it a 5 but a strong 4+,??? as for my tumors on my back I was to take the interferon 5 times a week for 1 month then 3 times a week for 11 months. Self-injections.
One thing I experienced is I live in a town that is small with the only closest place to give 5 day a week interferon is 40 miles away so I had to be driven everyday back and forth (2 hour trip) then I did finally make it through the one month but was so bad off I bout died!
I lost 52 lbs. had pneumonia, couldn’t walk. I quit. I have gone too organic eating; I take special vitamins and minerals and immune building supplements, I have gained back the weight, feel strong and last 2 brain scans are clear and last 2 PET scans clear. Dr’s are about themselves. I believe GOD and God giving my wife the strength and God giving us the knowledge to find the best vitamins and immune builders. You got to go with what your gut feels and keep a great attitude.

gd68
Posts: 4
Joined: Oct 2008

Hi Skinner,
Wow, you've been through a lot! I had surgery 19 months ago for stage 1a melanoma with regression... so, they did a sentinal lymph biopsy which was negative. Here I am, 19 months later, and it pops back up in my regional lymph nodes. I'm one of the "lucky" 14 percent who slip by the sentinal lymph node biopsy (after my surgery the inventor of the SLN biopsy published a paper saying it was not an effective diagnostic tool :( ) I've just had my surgery and am now a stage IIIc, which stinks. My husband has started a blog on www.network54.com specifically for melanoma. If you would like to chat about what immune building supplements your are using, I would be really happy to hear about it. I've been doing a lot of that, too.

how often do you have scans? My docs haven't discussed this and are sending me off to get radiation in a few weeks... not that I totally agree with the effectiveness of this treatment. Then, we would be doing a trial where I get vaccine and one long lasting peg-interferon injection once a week for 12+ weeks. I haven't seen any info about more or less side effects for this new interferon. If you have any thoughts, please let me know.

Best wishes,
gd

skinner's picture
skinner
Posts: 15
Joined: Aug 2007

Wow, I thought this thread was going to take off and have some informations we all could use. I am still doing fine and was wanting to hear from gd68 some more. is there another place that everyone is going to? I regisistered with www.network54.com and went under caregivers and found you but no answer. I would like to hear more info from others also. My email is: eyesofice2us@yahoo.com and I would like to know where everybody is giving more info, Thanks all. ~~Mike~~

bnlarsen
Posts: 2
Joined: Jan 2009

Just started 1st week on 11 month 3Xwk injection. My dosage is 25Mc x meter Sq body mass. Is that your dosage? Still have same joint pain and fatigue level?

rjscott
Posts: 1
Joined: May 2010

Hi, My husband is in his 2nd week of self injections of Interferon and there is a drug out there that has restored his quality of life. Its called Modafinil ( Provigil) and I think anyone who is on the Interferon treatment should look into this anti fatique medication. It is non addictive-and the side effects are so minimal. THIS WORKS !!! Its very expensive and most insurance company's will not pay for it. You might want to do a little research on this. It is mfg. by Cephalon drug company. It keeps you alert but not antsy. Doctors use it -Airline Pilots and Lawyers. Good Luck on your treatment. Stick with it...

kjeffe2
Posts: 1
Joined: Oct 2008

I just completed the 4 weeks of intravenous (5 days a week). This is a very nasty drug it was a VERY tough road! There were many days I wanted to give up but I felt I owed it to myself to do anything possible to try and reduce the risk of reoccurnace.
It was like the worst case of the flu you could imagine. I was unable to eat anything other than watermelon and suck on popsicles. I slept the majority of the 4 weeks due to fatigue and just to get through the nausea. I could barely walk up 3 stairs without having to take a break. I lost 15 pounds in the 4 weeks and really didn't have the weight to lose. I started to feel a bit better about 2 weeks after my intravenous was complete.
You daughter will definately need help with her children and forget about working during these 6 weeks.
I am due to start the 3 day a week self injection tomorrow.
Good luck to your daughter

hollyberry's picture
hollyberry
Posts: 176
Joined: Nov 2008

I did interferon for 6 days and almost died. I hope you fare better ,but don't hesitate to tell the docs when something doesn't feel right or your side-effects get worse.
You're in my prayers,
Hollyberry

silverqueen
Posts: 4
Joined: Feb 2009

Hello Everyone,

I first want to say I am so glad to have found this site...didn't realize how alone I have been feeling. After many months of investigation I had surgery three weeks ago to remove a blue nevus from my left temporal muscle that returned from pathology as a stage three melanoma. I have already begun radiation and microwave thermal therapy and will begin a year long treatment of a biological agent called Luekine.

If anyone has had any experience with this treatment I would appreciate feedback....and if I can be of any support to any one in this community...I am humbled to help.

Thank you,
Silverqueen

charron's picture
charron
Posts: 3
Joined: Feb 2009

Hi silverqueen, i am a recurrent matastisized melanoma person...lol I was just wanting to tell you, I understand the lonlyness of having cancer. all of a sudden EVERYTHING is different, or I guess we are different. your whole outlook on everything changes. I had never done chat rooms before, but the one off of this sites home page is really nice. you can chat, or just watch the conversation roll by, try it, it's a good place to vent if you want or to get a couple of laughs...Charron

silverqueen
Posts: 4
Joined: Feb 2009

Hi Charron,

thanks for the response and info re: chat rooms...I too don't have much experience w/chat rooms...but I got this far... I'm sure I can "stumble" my way into a chat!! I am off to catch a train to head for treatment....hope to meet up with you soon for a chat...

Siiver Queen

joyf
Posts: 2
Joined: Oct 2009

I so agree with you. Everything did change for me last year in December when I was diagnosed.
I am so glad I have found this site. Had a tumor removed with all of my lymph nodes in May. I was treated with Bio Chemotherapy to shrink it and it did. Radiation followed for 6 weeks. I am about to take Interferon soon. You are the first person I have contacted. How do I post my questions on this site. God bless us all and everyone is in my prayers.
J

jjk151
Posts: 1
Joined: Feb 2009

I had a new mole removed from my thigh last Nov. which turned out to be melanoma. The surgeon did a wide excision of my upper leg and removed three sentinel lymph nodes in groin. The node biopsy came back negative initially. Six weeks later, I received a call from Dr. saying the lymph nodes were positive for melanoma and that I had markers in my DNA. I opted to be in a study to have routine ultrasound and needle biopsies of remaining lymph nodes rather than the radical removal of groin lymph bed. I may be making a mistake but I am still in denial and am reacting quite conservatively. Just today my surgeon recommended an oncologist that may want me to do interferon treatments. I promised myself many years ago I would never do chemo if diagnosed with cancer. I am so afraid of this denial I am experiencing and wonder if I am able to make clear choices. I was intrigued with this Luekine treatment you mentioned. Can you tell me more about it?

silverqueen
Posts: 4
Joined: Feb 2009

I know your dilemma.. re: choices...I too struggled with the choice of interferon or luekine or vacccinations...I am following the advice of my oncologist on the choices...out of the three...Luekine is her recommendation. Now, vaccine or interferon may be the choice of other docs...and I know of others who have had good outcomes with either treatment. From my understanding Luekine is a biological agent that works with with the autoimmune system to help surpress further cancer cell growth...the treatment regime for Luekine is supposed to be easier to tolerate than interferon and provide similiar results. Luekine is given 14 days on 14 days off for a year through subcutaneuos self injection. I am not at the stage where I am receiving the Luekine...I am waiting to finish my last radiation/thermal therapy this Friday and from there I will take the next step to the Luekine. In your post you mentioned you had promised yourself no chemo...it is my understanding (and please anyone reading this correct me if I am wrong on this or anything else!) that interferon/Luekine are not chemotherapies...but biolgical agents which work differently on the body.

I know it's hard to feel as though you are making good decisions while on this roller coaster ride...for me... arming myself with knowledge, other peoples experiences, asking as many questions of my medical team as many times as I need to, and allowing myself time to absorb all the info has been key to feeling like I have landed on the best decision for me.

I hope this has helped...and remember ask as many questions as many times as you need to.

joyf
Posts: 2
Joined: Oct 2009

Dr.s say that I should of had Interferon no more then 57 days after surgery? Is this so?I am scheduled to start with weeks. thx for all of your help....I am new here so it is hard to navigate around. thx again

Mandy T
Posts: 2
Joined: Oct 2009

I ONLY have 4 weeks of Interferon left!!!

Yes, it was not an easy year...But, now, I can feel better about knowing that I am doing all I can to fight this disease! I still have a lot of living to do. I plan to get married and start a family!

It is doable. Just drink TONS of water, rest and stay positive! I'm not trying to make it sound easy-but that seems to sum up the last 11 months for me on it. It is different for everyone.

Here is a really good Melanoma Research Foundation website similar to this. I just found this board today! Both of these websites can help support, encourage, give information, and hopefully bring attention to this disease and lead to further research!

http://www.mpip.org/bb/bbindex.html

God Bless you all!
Mandy T
IIIa and ONLY 4 weeks of Interferon left!

mh1229
Posts: 22
Joined: May 2010

I have no experience with interferon but am a stage 3er. I have lots in common with your daughter, working mom with 4 kids. Mine are ages 12,8,5 and 1.
When I first began my reasearch on interferon I knew it wasn't for me. Besides the side affects I was also not impressed with the effectivness. Instead I went for a clinical trial. There are a few out there right now for stage 3, some that show real promise. I jumping through the hoops to enroll in the ipilimumab trail. If all goes well I will begin it on June 30th.
Some great resources (for me) have been Aim at Melanoma and Melanoma International Foundation. Lots of good stuff and links to find clinical trials and get questions answered.
Good luck with your journey...
Melanie

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