SharKats Posted May 10, 2004 Share Posted May 10, 2004 I saw my onc this past Friday and she told me that if I didn't have radiation within the next month my tumor will be back as big and bulky as it was initially. (It was a big one blocking most of the airway on my right lung). I think she said this because my last lung scan said "non-specific nodular density" at about the original site. I am terrified of radiation - from what I've read it's not going to "cure" small cell and that it is mainly used for pallative treatment. I was hoping to get some feedback from those of you who have gone through chemo and then radiation. Would you mind sharing your experience with me, briefly, i.e., are you glad you had it, did it help you, did the effects really harm your quality of life? Thanks for any info you can give me. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 10, 2004 Share Posted May 10, 2004 I had chemo and radiation at the same time so I don't know if my info is what you are looking for. I also have sclc and the combination killed the original tumor (I have since gotten mets to the liver but the original tumor is DEAD). Side effects from my radiation were fatigue, problems with my esophogus (went away after treatment was done). I continued to work all the way through treatment (am still working) so it wasn't toooo bad, lol. You have to decide what you think is best for YOU. For me, the decision was to be as aggressive as possible the first time around. The combination did put me in to remission (stability) for several months while I did PCI also. Prayers for strength and healing being sent your way. God Bless, MO Quote Link to comment Share on other sites More sharing options...
S. Jane Posted May 11, 2004 Share Posted May 11, 2004 My father was given radiation 1 week before he began his chemo, and continued for five weeks. Was it tough? Yes! His esophagus bothered him, he got weak and fatigued, and the brochospasm he had was because of the radiation. Would he do it again? Yes, because from what we understand the combined treatment of radiation and chemotherapy is the most successful treatment in battling this aggressive SCLC. It took a while to recover from being hit with all that, but now he is doing very well. Difficult five months. Blessings is what we have now. Jane Quote Link to comment Share on other sites More sharing options...
Don Wood Posted May 11, 2004 Share Posted May 11, 2004 My wife had radiation along with chemo. She had many bone mets. Those that were giving her pain and/or threatening bone integrity were irradiated. It substantially reduced the bone pain, and helped the bones to heal. In her case, it was absolutely necessary to have radiation. The major side effect she had besides fatigue was her throat was irritated from the upper spine radiation, causing her difficulty in eating and she even lost her voice. It has all returned to normal since. Good luck. Don Quote Link to comment Share on other sites More sharing options...
SharKats Posted May 11, 2004 Author Share Posted May 11, 2004 Mo - you absolutely amaze me! To continue to work through chemo and radiation is mind-boggling. I am having trouble keeping RBC's up and am very SOB. I have trouble walking across the street and back to the front door. Jane, I'm so happy your Dad is doing well now - I can only imagine that it was a very difficult 5 months. And Don, Lucy has had amazing results with her treatment. Maybe I've read articles where people were affected horribly by radiation with no positive results and I guess I can't get it out of my mind. So many difficult decisions to make with this disease - so many differing opinions and results; it makes my head spin and the few remaining brain cells dizzy. Thanks for your imput - I really appreciate it. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 11, 2004 Share Posted May 11, 2004 I would do it again! I had both chemo and radiation last yr. I was tired, but it helped shrink the tumor and it is now scar tissue. I also broke my leg 1 week into the radiation so I really had fun those several weeks going to and from the hospital everyday (40 miles oneway) having to use a wheelchair! What a memory Good Luck Cindy Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted May 11, 2004 Share Posted May 11, 2004 Sharlene, don't get caught into thinking that radiation is only pallative. SCLC is quite sensitive to radiation, and it helps knock out large clumps of tumor. Radiation is considered important in eliminating tumors, not "just" symptom relief. Sure, it's tough. And the effects can linger. But worth it. Quote Link to comment Share on other sites More sharing options...
john Posted May 11, 2004 Share Posted May 11, 2004 I think most of the studies show concurrent chemo and radiation gets the best results. I think radiation and chemo work synergistically. Cary, posted an article a while ago that certain chemos halt the cell division cycle in a certain phase, this makes them more sensitive to radiation. There are drugs like Ethyol that may reduce a lot of the side effects of radiation. Radiation is "local" only, but I think the combination chemo/radiation is supposed to work the best. Again, there are more severe side effects and drugs like ethyol can be used. It is a tough decision, but get as much info as you can and good luck with your decision. Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 11, 2004 Share Posted May 11, 2004 Sharlene, I have no regrets doing radiation. I also wanted to hit the beast with all I could muster. My radiation was a bit intense as my Doc did 15 days twice a day. by the last few days along with the chemo I was finishing up I didn't feel that great. Fatigue, nausea, and the worse was not being able to swallow. This of course did clear up about a week or 2 after. I would do it again especially when you see a clean CT & Pet! Hope this helps. Of course your final decision will be yours. Good luck to you. Rachel Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted May 11, 2004 Share Posted May 11, 2004 Sharlene, I had combo radiation and chemo for pancoast tumor, and on surgery it was found to be dead. End of story. Would I do it again? yes!. Good luck to you, MaryAnn Quote Link to comment Share on other sites More sharing options...
SharKats Posted May 11, 2004 Author Share Posted May 11, 2004 My gosh Rachel - how did you cope with not being able to swallow for 2 weeks? That must have been awful!! Were you on a liquid diet? Wow - radiation twice a day along w/chemo!! That is certainly very aggressive treatment. I just thought of this also - what would someone do if you had chemo then radiation (or chemo concurrent w/radiation) and the tumor still came back in the original site? What then is used for pallative care? Quote Link to comment Share on other sites More sharing options...
Hebbie Posted May 11, 2004 Share Posted May 11, 2004 Like Rachel, I too suffered from SEVERE problems swallowing from radiation, my esophogus got FRIED! I had radiation 5 days a week for 6 weeks, at the same time as weekly chemo. I was not a happy camper by the end.....I had fatigue and dehydration but the worst was, by far, the soreness in esophogus. Would I do it again? IN A HEARTBEAT!!! Quote Link to comment Share on other sites More sharing options...
Remembering Dave Posted May 12, 2004 Share Posted May 12, 2004 Dave had chemo and radiation at the same time. We were told that SCLC responds very well to chemo and radiation. After Dave finished chemo (last longer than the radiation) he had his first CT scan after diagnoses and the tumors were gone! He had very little trouble with the chest radiation. I say go for it. It's not bad, from what we could see. and it just might make that monster go away. God Bless, Karen C. (David C's wife) Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 12, 2004 Share Posted May 12, 2004 Shar, In my case I wasn't so worried about pallitive care, I just wanted the tumor GONE. I think there are actually very few cases where the tumor returns in the same spot once it has been treated with chemo and radiation. In most cases there is an amount of scar tissue left aftet treatment (may diminish with time). What is it that you have heard that is keeping you from getting the treatment? Everyone I talked with before and after radiation has had some side effects but they we basically "minor" when compared with the destruction of the tumor. Esophogus pain is the BIG side effect but it goes away. Prayers for strength and healing being sent your way! God Bless, MO Quote Link to comment Share on other sites More sharing options...
SharKats Posted May 12, 2004 Author Share Posted May 12, 2004 Mo, I think it's because my 2nd opinion onc (professor of oncology @ Baylor College of Medicine) didn't want me to have radiation and chemo @ the same time since I have extensive stage sclc. He said it would make me so sick I may have to go off chemo and that chemo was the best treatment. He also felt when/if the sclc came back it would come back in my liver not my chest. When I was growing up I had strep throat all the time (seemed like it) and when tonsils were removed the gentleman left some tonsil material behind, ergo, still had a lot of sore throats and I just hate them. When I found out radiation burned your esophogus, I just thought if there were any other way to do it, I'd take the "other way". I was also told that since I had been a long time smoker that my lungs were damaged and the radiation would damage some (or a lot) of whatever healthy lung tissue was left so I would be SOB for the rest of my life. (Well, I'm already SOB all the time anyway - so........) Anyway, that's why I've been hoping to avoid it. Plus the radiation onc REFUSED to do it even though I went through all that measuring, marking, tatooing stuff once she saw it was in my liver (liver scans have been clear since first round of chemo). Did I make any sense with my ramblings? Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 12, 2004 Share Posted May 12, 2004 Shar, Only you can decide what is best or you. Yes it hurts like hades when your esophogus is involved but it goes away! I haven't noticed any SOB since radiation since they radiated a limited field. I would check in to it again as it really does seem to offer the best chance of stability or remission. Best wishes headed your way! God Bless, MO Quote Link to comment Share on other sites More sharing options...
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