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View Full Version : Level 4 melanoma spread to 1 lymphnode .Year of interferon?


maemae
09-11-2008, 07:51 AM
I am a 43 year old mother of two beautiful girls. I am newly remarried to the man of my dreams. I had a mole removed 18 years ago. Level 3. This was a misread and did not get a call for 2 years. Had wide excusion 10x3x2 and told it was clear and the doctor must have gotten it all 2 years ago. Here it is 18 years later and I have put on some weight due to my new marriage. my girls are grown and having the time of my life. Gyno checked thyroid and said it was low so she put me on meds. The nite before my med rechecK appointment I found a pecan shape swollen lymphnode in the left groin ...my original mole was on the same leg on my calf. they sent me to the surgeon the next day and I was admitted to the hospital and they removed it. I was awoken and told it was back. Next, pet scan still showing red in my hip socket so back to exploratory surgery. They removed my overy and phylopian tube. Results of those came back benigh. then they presented my case to the tumor board and back to the hospital for the removal of all the lymphnodes in my left groin and a port put in for interferon. I had interferon for 30 days straight and became so sick I could not raise my head. I had horrible side effects even for a month after. I am still short of breath. I am suppose to start my 3 shots a week at home and don't know anyone who has had this. My melanoma is a level 4 now. i have not had another pet scan??? Everytime I ask my doctor he says I don't need one yet. This all has happened since April 14th ,2008 . I went to Moffitt for a second opinon and they also told me the only thing I could do is interferon. Is there anybodY:confused: out there that I can relate to? :confused::confused:

mahnee
09-11-2008, 10:14 AM
Hi - I am sorry about your diagnosis. If I am understanding you correctly, you are a stage 4 now. If it is in a lymph node, you are stage 4, not level 4.

I also had severe side effects from Interferon. In fact, it nearly killed me. I could only do 6 of the high dose treatments. My kidneys shut down and I was ready to die... was hoping I would die at that point.

As long as your oncologist is keeping a close watch on you and your side effects - you should be okay. But make sure you keep them informed of ALL of you side effects.

As far as the PET scan, I only had one - when I was first diagnosed in 06. I am stage IIB right now.

Have you looked into any trials? Although I believe if you are doing the Interferon, you cannot start any trials until you are done with that. But check into trials to see if maybe something will be acceptable.

I hope all turns out well. Keep us posted on how you are doing.

maemae
09-11-2008, 11:25 AM
Hi - I am sorry about your diagnosis. If I am understanding you correctly, you are a stage 4 now. If it is in a lymph node, you are stage 4, not level 4.

I also had severe side effects from Interferon. In fact, it nearly killed me. I could only do 6 of the high dose treatments. My kidneys shut down and I was ready to die... was hoping I would die at that point.

As long as your oncologist is keeping a close watch on you and your side effects - you should be okay. But make sure you keep them informed of ALL of you side effects.

As far as the PET scan, I only had one - when I was first diagnosed in 06. I am stage IIB right now.

Have you looked into any trials? Although I believe if you are doing the Interferon, you cannot start any trials until you are done with that. But check into trials to see if maybe something will be acceptable.

I hope all turns out well. Keep us posted on how you are doing.
Thank you so much for concerns. Do you have it in any lymphnodes?

gaguyo
09-11-2008, 11:33 PM
Hi maemae,
I also have stage 4 melanoma. I was first diagnosed back in 2000. It was in my left hand and it spread to the lymph nodes in my left armpit. The first lypmh node they biopsied came back positive so they ended up removing them all. After that I also had a 30 day interferon treatment. I did get some side effects (weakness, hair thinning, loss apetite). When I was done with the 30 days, I had injections every day for the next year. After 7 months on the treatment, I started having allergic reactions to the interferon (hives all over my body). The doctor told me that I had gotten enough of the interferon and that I could stop the treatment but I decided to finish the whole year. After that the cancer went on remission for six years and it came back last year. It spread to different parts of my skin. I started a treatment called biochemotherapy, it is interferon, interlukin and regular chemotherapy drugs. I was supposed to have 6 cycles of the treatment but I could only take four. I was getting very ill after the treatments and the doctor decided to stop it. The tumors on my skin did not shrink with the treatment so they were removed with surgery. The last treatment that I had was on may, so far I have had 2 pet scans and they came back negative. I am very sorry that you are going through this, I hope that everything works out for you and that you stop having side effects from the treatment. God bless you!

maemae
09-12-2008, 04:01 PM
Hi maemae,
I also have stage 4 melanoma. I was first diagnosed back in 2000. It was in my left hand and it spread to the lymph nodes in my left armpit. The first lypmh node they biopsied came back positive so they ended up removing them all. After that I also had a 30 day interferon treatment. I did get some side effects (weakness, hair thinning, loss apetite). When I was done with the 30 days, I had injections every day for the next year. After 7 months on the treatment, I started having allergic reactions to the interferon (hives all over my body). The doctor told me that I had gotten enough of the interferon and that I could stop the treatment but I decided to finish the whole year. After that the cancer went on remission for six years and it came back last year. It spread to different parts of my skin. I started a treatment called biochemotherapy, it is interferon, interlukin and regular chemotherapy drugs. I was supposed to have 6 cycles of the treatment but I could only take four. I was getting very ill after the treatments and the doctor decided to stop it. The tumors on my skin did not shrink with the treatment so they were removed with surgery. The last treatment that I had was on may, so far I have had 2 pet scans and they came back negative. I am very sorry that you are going through this, I hope that everything works out for you and that you stop having side effects from the treatment. God bless you!

maemae
09-12-2008, 04:16 PM
Hi gaguyo! Thank you so much for taking the time to drop me a line. I have not been able to talk to anyone with a Stage 4 and in their lympnodes that had been thru the interferon treatments. I have been so scard about my diagnoses! It has really helped me to hear of your very positive outlook on life and your treatments. I have been told that the year of interferon treatments was not proven to be effective and my doctors have left the decision up to me. It sounds like it has really helped you. I have been on 30 days of interferon and interluken in a port. I could not even raise my head off the pillow by the 3rd week. I am afraid of these 3 shots a week and I am suppose to start them Monday. You have given me great hope. Thank you and God Bless You for taking the time to give me your info on this drug and illness.

gaguyo
09-13-2008, 12:00 AM
Hi maemae,

I know exactly how you feel, believe me. Back when I was first diagnosed the doctor told me that the interferon was an experimental drug, they really didn't know if it was going to work or not, but that was the only treatment available then. I guess it did help me because the cancer went on remission for six years. Last year when the melanoma came back I was very scared because I know that this is hard to treat but I read about the treatments available and learned about the interlukin. I never imagined that it was going to be so tough, I would go five days to the hospital and I would get the treatment there and then go home for three weeks. I felt so sick that by the second cycle of the treatment I wanted to quit. I was supposed to do six cycles but only could do four. I wish I could help you more but all I can say is to be very strong and don't give up. I would have liked to have someone saying this to me when I went through it. It makes a big difference to hear it from someone that has actually been there. I would imagine that the injections will not be as strong as the treatment given when you are in the hospital. I wish you the best, take care!!!

gaguyo
09-13-2008, 12:05 AM
maemae,
the year of treatment is interferon only or is it combined with the interlukin? If it is only interferon, you shouldn't feel very sick. When I was on it (the interferon shots), I did have side effects but I was able to work and do everything normal.

llorrac
12-30-2009, 10:38 PM
I am a 43 year old mother of two beautiful girls. I am newly remarried to the man of my dreams. I had a mole removed 18 years ago. Level 3. This was a misread and did not get a call for 2 years. Had wide excusion 10x3x2 and told it was clear and the doctor must have gotten it all 2 years ago. Here it is 18 years later and I have put on some weight due to my new marriage. my girls are grown and having the time of my life. Gyno checked thyroid and said it was low so she put me on meds. The nite before my med rechecK appointment I found a pecan shape swollen lymphnode in the left groin ...my original mole was on the same leg on my calf. they sent me to the surgeon the next day and I was admitted to the hospital and they removed it. I was awoken and told it was back. Next, pet scan still showing red in my hip socket so back to exploratory surgery. They removed my overy and phylopian tube. Results of those came back benigh. then they presented my case to the tumor board and back to the hospital for the removal of all the lymphnodes in my left groin and a port put in for interferon. I had interferon for 30 days straight and became so sick I could not raise my head. I had horrible side effects even for a month after. I am still short of breath. I am suppose to start my 3 shots a week at home and don't know anyone who has had this. My melanoma is a level 4 now. i have not had another pet scan??? Everytime I ask my doctor he says I don't need one yet. This all has happened since April 14th ,2008 . I went to Moffitt for a second opinon and they also told me the only thing I could do is interferon. Is there anybodY:confused: out there that I can relate to? :confused::confused:
Hi
I had a ulcerated melanoma removed from my back in october 2009 and all my lynph nodes removed under my right arm in november and I am about to start the interferon treatment (1mnth full on and then injections 3 x a week for the remaining 11 months). I read your story and wondered how you coped and what side effects you had. I hope all is going well for you.