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Treatment - what should I expect?

scryerj
Posts: 1
Joined: May 2003

Hi. My name is Susan. I was diagnosed with Stage IIIB Melanoma in February of this year. It started as a mole on my back. The mole was removed and checked. I have had two surgeries; the first was a wide excision at the tumor site and a Sentinel Node Biopsy. That lymph node showed some melanoma cells, so the second surgery removed all lymph nodes under my right arm. I have also had a PET scan, which looks for cancer cell clusters in the soft tissue and body organs. Both the scan and the second biopsy came back negative. My Dr. is recommending either a Clinical Trial (if he can get me into it) or Interferon. He says that he doesn't really like Interferon because of the associated risks(?) Can anyone help me understand what the risks are and what the treatment is like? I need to know what to expect as far as personal life, work, etc. Also, I want to go back to work as soon as I can after this last surgery. How long has it taken for you to go back to work after the lymph node removal?
I guess I am just looking for answers from people who have experienced this too. I trust my doctor, but he doesn't have quite the same vested interest in this as I do. Thanks for any replies, and I will add you all to my prayers.

tracymomof2
Posts: 1
Joined: May 2003

Hi Susan my name is Tracy I am Stage 3a diag feb 2002 same situation 1 node pos. Interferon for 11 mos. If you have any questions about Interfeon email me. I did a clinical trial biochemo vs interferon and ended up getting the interferon with no iv for the firsat month started out with self injections of 20 miu. It wasnt a cakewalk but I did it and I,m a woos! I went with a trial because I felt I would be watched more closely. They havn,t failed me yet I am cancer free and have cts and bloodwork every 3 mos. If I want a Pet I just have to ask. Hang in there and ask anything you'd like.
God Bless, Tracy

Tomsan
Posts: 3
Joined: May 2003

Hi Susan,
I also went through both surgeries and first was positive and second time they took twelve more from under my arm. I was out of work three days the second time. I've been treated through UCLA Med Center and with very in depth research I opted for the interferon. I did thirty days of intense IV followed by eleven months of self injections three times a week. This is the best chance approach that has the best clinical results I've seen so far. The biggest downside of the interferon are flu like symtoms, aches, chills and very low energy level. I didn't want to take a lot of time off work so I scheduled my first thirty day IV's for 4:30pm and left work one hour early every day. My IV's took hour and half and I drove myself home (30 minutes). By the time I got home I would have severe chills so I would dress warm and immediately go to bed for two hours. I took benadril to knock down the chills. After two hours the chills would go away and I would get up and eat dinner with the family. (I tried to minimize any change to family, work, or personal life.) After dinner I headed back to bed for an early night of fever and chills. I'd get up at 6:00am very tired but no other symtoms. I'd go to work, take a 30 minute nap at lunch, work and then head out for the next day of treatment. After about one week my tolerance level improved and the chills lessened.

When I started the self injections I picked Sunday eve, Tuesday, and Thurs so I could get some energy level back for weekend activites. I never missed a day of work. I could keep my scedule even with travel to Japan and around the US. I tried to make it part of my routine and not think about always being tired. I rode my bicycle an average of 50 miles per week, took my kids skiing every other week etc. You learn tricks to keep going like cat naps on the chair lift.

One other side effect is loss of appetite and a chemical or plastic taste from the interferon. That's no problem either. I ate what sounded good and kept to my normal meal times. They tell you to eat lemmon drops to kill the plastic taste but I preferred using eucalyptis cough drops.

I'm now two 1/2 years cancer free and felt the one year of inconvenience a reasonable trade. Rule number one is change your routine as little as possible, keep your head down, and charge!

Have your doctor e-mail me if he has any questions as to the benefit of this treatment!

You'll do fine!

tblake
Posts: 1
Joined: May 2003

Hi Susan! My name is Blake. I was diagnosed with a level 5 melonoma in February of 2001. I also had the sentinel lymph work done and they also removed a place the size of Rhond Island, well atleast it looks that way to me, and removed the affected lymph node and and its surrounding neighbors. I also had a pet scan before starting interfuron last April. I pretty much had the flulike symptons and incredible fatigue most others describe. I also had trouble with white counts dropping every two weeks and had to have leukine for a week at a time. At this time I have completed 39 weeks of a 52 week protocol. I am just finishing up a 4 week rest from treatment as I had some trouble with keeping my blood oxygen levels up and I seem to have darkened a level or two on my skin tone. Some of the other issues with the interfuron treatment are that it seems hard on the liver as the medecine and copious amounts of Tylenol are hard on it and I always feel very dehydrated. The bottom line is though....It seems to be a good treatment for our type of cancer and I'll shoot for a 85% survival rate over a 15% any day of the week. Hopes this helps a bit , God Bless and good luck. Blake

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