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Clinical trial vs. interferon

shellbells
Posts: 3
Joined: Mar 2006

My fiance and I are having a terrible time making the decision of what treatment he should choose. Just a bit of background information, we're both 28 years old, got engaged at the end of October, bought and moved into our first home on New Years Eve, then found out he had cancer two weeks later. 8 years ago (age 18) he had surgery to remove a very thin melanoma from his upper left calf. January 12,2006 he was at his dermatoligst getting his biyearly checkup celebrating the fact that he was at his 8 year cancer free anniversary. He had a freckle removed which turned out to be benign, but that very same night he noticed a golf size ball growth near his groin. He knew to freak out b/c the dermatologist always checks his lymph nodes. We were told from many a doctor the chances were 1 in 10,000 that it would be cancer, sure enough, it was freaking cancer.
Anyway sorry to be so longwinded but 2/8 he had 13 of his lymph nodes removed and thankfully only one of them turned out to be cancerous. Now we're faced with the option of how to continue his treatment: standard interferon treatment OR a clinical trial that consists of an intense treamtment of biochemotherapy. To be exact the protocol # is W-00-0396-FB at Beth Israel under the care of Dr. Michael B. Atkins, consisting of a combination of cisplatin, vinblastine, DTIC, interferon alpha 2-b, G-CSF and interleukin-2 (IL-2). We have had a couple of dr.'s recommend the trial, but a couple have not. Obviously we want to do what's best so that the cancer does not come back. Yet we also want to know about side effects of both interferon, and if anyone is familiar with the clinical trial I've described, we'd both be so appreciative. Thank you at least for reading my message and my sincerest thanks if you have any advice/replies.

Allie001
Posts: 8
Joined: Dec 2005

I am so sorry you are going through this all, your story sounds like my fiance and mine. It is hard to make decisions like this, I know we got second, third and fourth options before we decided. I am 21 and a stage 3, right now I am in my 5th month of a year long treatment of Interferon. It has been tough with side effects, the first month was ok, but when I started to do the shots (3 times a week) at home my symptoms became worse. I get nausea (sometimes get sick) bad aches, chills and fatigue. I am not working and I don't think I will for the hole year, the fatigue and achy body is the worse. Make sure to drinks a lot of water, and have an electric blanket for chills.

I am not sure about the clinical trial, but I do know Interferon is not easy, but I see it as one year for many more years of life. If you have any other questions please don't hesitate to contact me. Good luck with whatever you decide, it's great you have each other.

shellbells
Posts: 3
Joined: Mar 2006

Allie001,
I am so sorry you're going through this at such a young age. I guess no matter what age cancer just scares the living crap out of you and everyone around you. Thanks so much for responding to me. I keep telling Matt to get on this website so he can talk to other people in his position, I really think it would help him but he's stubborn.
So you're in month 5 of your treatment, well you've made it this far just a couple more to go. I can't imagine feeling that crappy all the time, I guess you just have to take it one day at a time. I know for me I'm thinking about when Matt is better and we can start planning our wedding. We also had a trip to Aruba planned for May 21 that we actually still havenn't cancelled. We're thinking we're going to see how Matt feels at that time, and then proceed accordingly. If he feels up to it, a vacation for the both of us is much deserved. If not, then oh well. Matt and I went to another oncologist this passed Wednesday and he told us to go for the clinical trial. I think the both of us were just kind of sick of not knowing of what direction he should take, so we decided right there and then to just register for it. After a bunch more of tests, bloodwork, CAT scans next week, a computer will randomly select what group of the clinical trial he's in. I guess at that point it's in God's hands anyway because there's still a 50% chance that he will be in the standard year long interferon group, OR the intense biochemotherapy inpatient intense 3 month treatment. I'll definitely be back on this site letting others know what group he was put in, and his progress throughout.
If you wouldnt' mind I'd be interested in hearing your whole story, where the cancer is, where you went for treatment, if they offered you any other types of treatment.
Thanks again for responding, good luck to you and hopefully I'll hear back from you.
shellbells (Michelle)

strager
Posts: 1
Joined: Apr 2006

I had melanoma on my foot and more than half of my lymphnodes were infected. I did the interferon, and had trouble at first, but it got better as I learned how to handle it.

The first month was the hardest...The first two days I had really bad chills and nausea and headaches. I couldn't get out of bed. The doctor gave me some Kytrel to help and it did a lot. I also learned to take Benedryl right when I started the treatment because I started to learn that my side effects kicked in about four hours later. If I took the Benedryl before and during, I didn't have any issues.

During the shots at home, I learned how to make it easier by using an ice pack to numb where I was going to do my shot...That helped so much (the stomach was the easiest spot because there's little muscle). I kept taking the benedryl. I still had fatique and I still lost a lot of hair (not all, but I went pretty thin and had super thick hair before). I became rather thin, which is funny to me because I ate like an absolute pig.

My one year anniversary being "interferon" free is tomorrow, and I feel wonderful. I knew I felt bad, but until I felt like myself again, I hadn't realized what a huge difference it was. I worked full time throughout my shots at home but when I couldn't, my employer was very understanding.

Interferon isn't for everyone, and neither are trials. The decision has to be made between you both. It's a hard decision, but it's one you have to be comfortable with. I could have done a trial, but it meant nine weeks in a hospital an hour from home and the normalcy of my life at home was important in helping me cope, so I chose interferon nearby, which was the standard of care anyway. I'm happy with my choice...it allowed me to still live my life as best I could during this. So far, so good (knock on wood).

If you need to talk, feel free to contact me. I too am dealing with this at a young age. I was diagnosed at 25, after only three years of marriage. It was hard for both my husband and I, and it still is. We've been through all of the cycles...the worry, the doubt, the anger, and worry again. I feel for you but I know you'll get through it!

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