SCLC Treatment Questions

justwhatiwanted
justwhatiwanted Member Posts: 12
edited March 2014 in Lung Cancer #1
Hello,

My name is Heather, and I was diagnosed in 6/02 with cancer. I have what is called a Merkel Cell carcinoma (a very rare and highly aggressive non-melanoma skin cancer). Because it is such a rare cancer and they don't know much about it, they have a difficult time treating it; however, they have found that the pathology of the tumor is quite similar to a small cell lung cancer, and so frequently they treat it as such. That's why I am posting a message here.

I am usually posting messages in the Head and Neck Cancer area, since the tumor I had was in the neck and I am recieving radiation to the head/neck. However, most of these people are not following the same treatment as was prescribed to me with regards to chemo.

They want to do an adjunctive chemo after the radiation... 4 cycles of cisplatin and VP16. My question (yes, I am actually getting to it!) is to those who had a similar treatment... simply how was it? What were the side effects? Did you get radiation? Which was worse? Did you ever consider not doing the chemo? etc. etc. etc.

I must say, I am thinking about not going through with the chemo. I hear that the VP16 carries with it a chance of secondary leukemias, and can cause infertility. As I am only 26 years old and have no children, I am very hesitant to have to make that choice now... and because my life span is (supposedly) so long, my doctor says that the chances of leukemia are higher. But before I make a concrete decision on this, I really wanted to contact some people who have something at least CLOSE to what I have and get their opinions.

You can email me at schult70@msu.edu, or send me a message through ACSCSN. Thank you for your time.

Good health to all,
Heather

Comments

  • bobz1
    bobz1 Member Posts: 50
    #2
    so sorry to hear about your illness. I have been threw the whole range of treatments, been there done that.The most important part is Im ALIVE.I didnt have to take cemo, even though it was recomended. I didnt have to take the radiation but I did. 21 treatments. two secions of cemo 6 months apart.I was sicker then a dog.weaker then a new born baby,bottom line IM ALIVE. I would recomend doing every thing and taking everything your doctor advises.You can beat this thing,Ive seen it happen, but you got to fight, not give up because of what some one else said could happen.Thus is the first day of the rest of your life.We learn to take each day one at a time, and thank GOD for it.So dont give up. ask yourself what else can I do, find out what it is then do it.Best of luck, Ill pray for you,Hang in there...Bobz1
  • bobz1
    bobz1 Member Posts: 50
    #3
    so sorry to hear about your illness. I have been threw the whole range of treatments, been there done that.The most important part is Im ALIVE.I didnt have to take cemo, even though it was recomended. I didnt have to take the radiation but I did. 21 treatments. two secions of cemo 6 months apart.I was sicker then a dog.weaker then a new born baby,bottom line IM ALIVE. I would recomend doing every thing and taking everything your doctor advises.You can beat this thing,Ive seen it happen, but you got to fight, not give up because of what some one else said could happen.Thus is the first day of the rest of your life.We learn to take each day one at a time, and thank GOD for it.So dont give up. ask yourself what else can I do, find out what it is then do it.Best of luck, Ill pray for you,Hang in there...Bobz1
  • towanda
    towanda Member Posts: 19
    #4
    Dear Heather, my name is Cindy and i have small cell lung cancer. You and I are very similar cuz we are about the same age. I was 27 when they diagnosed me. I had cisplatin and v16. The first round made me sick and 1 week later my hair fell out. The second round was no picnic but it wasn't as bad as the first. I had 2 more rounds and they didn't affect me anything like the first two did. Basically, It's not going to be easy. There are pills that they will give you that do help A LOT! Girl, you need to fight with every bone in your body. You are 26 and probably a lot more healthy than a lot of others with a similar disease so you're body will be able to withstand more. They told me that it may make me infertile but 2 months after chemo stopped i got my period back and they seem to think that i'll be able to have more children. If you're really concerned, discussed with your doctor about freezing your eggs. That is an option! I had chemo and radiation at the same time and that was horrible! They gave me rads to my throat and chest twice a day for 3 weeks! I couldn't eat or drink anything for 2 weeks. It would have been much easier to just have the chemo then the rads but they were being very aggressive with me. What i am trying to say is, you're young and you're female(females usually do better and respond faster to treatment than males) and your other organs are in good shape so smile and fight this disease with everything you got. Oh, by the way, i'm in remission. I was diagnosed in Feb with an 8 cm tumor in left lung and a tumor the size of a baseball in my neck. If you would like to e-mail me, my e-mail is cynthiacole90@hotmail.com. Good luck girl and i will be praying for you. Cindy

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