Anyone willing to share their experiences with concurrent chemo and radiation for nsclc? Hubby has some mediastinal(sp) lymph’s involved.
Dr scared the car out of me when he said”if you survive this treatment....”
I need to know success stories and reality for what to expect, please.
So I was diagnosed at 3B in July of 2015. I had concurrent chemotherapy (cisplatin & alimta) and 37 radiation treatments. I was 38-year-old and in otherwise decent health when I underwent the treatments. I had several connected problems (beyond severe fatigue) worth looking out for: because of the location of my primary tumor (upper right lung, attached to the inside or "center" wall) and the mediastinal lymph nodes involvement, the radiation field included a substantial portion of my esophagus, and badly burned it. It healed over a couple of months after treatment and went back to normal. But during the treatment, it became progressively worse and quickly reached a point where I couldn't swallow anything without extreme pain—including water or anything else. I crashed off some weight before they found the right pain management solutions, but part of my problem was that I waited too long to say anything.
Otherwise, the understanding is that the two treatments are more effective when they're done simultaneously. But the side effects are also more brutal. Aside from severe fatigue and the pain I talked about, I had a lot of the other stuff: nausea, vomiting, dehydration, etc.
I had a good response, considering the size of the primary tumor and the lymph node involvement. I did have a recurrence about nine months after I finished the frontline treatment (so now Stage IV) but that's not from the failure of those treatments as much as the aggressiveness of the disease. And I'm doing well for on an immunotherapy protocol.
I hope this helps, even a little.
I have stage 3 a and had surgery to remove right lung and I'm going on 3 rounds of Altima and cispaltin and then after 5 weeks of radiation.....will I have a reoccurrence? Did u have surgery to remove tumor?....now I'm really scared
Did u have surgery to remove the mass?/
No surgery, because it was 3B originally and already spread to a lymph node under the collarbone. In my situation, surgery would not have prevented the recurrence. But even when it happened, it was not the end of the world. I am still here!
missesthehoney i had stage3a they removed upper left lobe ,wanted me to do radiation i refused they said i was going to die. i done 6 months chemo the first day they gave me taxoli i was allergic to it ,so they changed it too taxetere and carplatin i did really well with it. it is now 5years and no more cancer. i,m cancer free. he should do good with it thats why i told you about me. the chemo or someone was watching over me. Theres a angel beside him always helping him its his angel. tell him to not give up to keep on fighting and hope a whole lot of hope. if it happened to me than it possible it could happen to him. i,ll pray for him to get better. susiejo1948
So great to hear you are NED and I'm also 3a 4 nodes removed from trachea that had cancer in them, they were surgically removed along with a 5 cm tumor, rul and Mrl also gone, so 2/3 of right lung gone and nodes gone, now I have to do 3 rounds of chemo and then 5 weeks of radiation...then I was told CURED
mrsthehoney, I was diagnosed March 2012 with stage 3A/3B lung cancer that had metasticised into the lymph nodes, at best only marginally borderline operable. I insisted on the operation and finally got the oncologist and surgeon to agree. I had targeted daily radiation that maxed out after 8 weeks treatment, and concurrently had weekly maximum potency chemo ( taxidere and cistoplatin ), and then on May 30, 2012 had a lobectomy of my top right lung lobe, and also cancer removal from the lymph nodes where possible. After surgery, I almost immediately started chemo again ( not sure but may have been every 3 weeks ) and continued this post surgery chemo for 2 years. And somehow, some way I am still here ( my prognosis had me with a 10 % chance, at best, of surviving 5 years). Moral, never give in and never give up, never. There will be tough times, but again never give in and never give up. Kindest Wishes to you and your husband, judg69.
Was diagnosed with IIIB NSCLC Squamous in Jan 2009. Did Surgery in Feb 2009,they couldn’ t get the tumor due to location. Then did concurrent Radiation 35(7 X 5). 2Cycles of Cisplatin/Etoposide then 3Cycles of Carboplatin/Taxol. Had lots of pain in Esophagus. Fentanyl patches helped lots. Also did a clinical trial.
David
Mine is stage 4 but my oncologist said it behaved like a 3b and treated it that way. I had cisplatin and etopicide. The fatigue was debilitating. I would wake up thirsty, grab my water bottle and then wake up again a few minutes later with the water bottle halfway to my mouth.
My nausea was minimal except the time I didn’t take my steroids as directed. When I had an issue they added zofran sublingual to my meds.
Try to walk a little bit each day, even if it’s only around the inside of your house. Join the family at dinner time, you don’t have to eat a lot but it’s stimulation you need and it counts as walking
Calorie packed meals are more important than a “balanced diet”. Eat 5 or 6 small meals a day. Stay well hydrated to protect your kidneys, add a sports type drink or use DripDrops in water to replace electrolytes that get washed away. Use a stool softener daily.
After a couple weeks, the radiation can cause burning pain in your esophagus. It doesn’t happen to everyone and a couple weeks after radiation ends the pain will go away. After each radiation treatment eat a tablespoon of honey. It’s been used for millennia to heal burns inside and out.
If you have pain with swallowing try eating the following: buttered noodles and rice, applesauce, oatmeal, cream of wheat, scrambled eggs with or without cheese, jello, pudding, Boost, mashed potatoes with gravy or butter, sweet potatoes, cream soups, yogurt, fruit cups, finely chopped meats (beef or pork even hot dogs if you crave) and ice cream. I did ice cream therapy almost every day, vanilla ice cream with fudge sauce and bananas. Some people like aloe juice, I didn’t find one I liked. Avoid pepper
If one of the chemo drugs ends in the suffix -platin, you will likely experience a metallic taste with everything. Use chopsticks or plasticware to eat, it will help reduce that metallic taste.
Hope this helps.
I had the same chemo and radiation (30 of the latter and 7 of the former) and did quite well. Doctors, I've come to learn, can speak rather thoughtlessly at times. Remain positive and best wishes for an easy treatment experience.
I was diagnosed with 3A this February. It was in the RUL and I had two lymph nodes involved. Went to surgeon and he said no way he would touch it because it was to big. Had 30 radiation and the same chemo that your husband is having. Had 6 rounds of that and then 4 of Alimta and carbo. I didn’t have any side effects from the chemo just mild nausea but they gave me pills for that and my hair fell out. Radiation was a little rough. Felt like a sunburn but again gave me meds for it. Last two weeks of radiation I had a very sore throat. Hard to swallow. They gave me something called magic mouthwash. It numbed my throat. Through all of that I was very tired. It effects people differently.
So 6 weeks after all my treatment the doctors were befuddled. Had a bronoscopy done and they couldn’t get a biopsy cuz there was nothing to biopsy. Went back to same surgeon that said no way and now he said WAY,, on November 17th he did robotic surgery and removed my right upper lobe and had to remove my right middle lobe due to all the damage from radiation and chemo. Also removed 15 lymph node. On the day before thanksgiving the surgeon called to say all lymphnodes NO CANCER both lobes NO CANCER and residual tissue NO CANCER and HAPPY THANKSGIVING!
What a blessing. Yes the road is rough but the key is to never give up. Will I ever have cancer again? I sure hope not but there is a chance it can come back somewhere else. If it does I will be ready for it and I will FIGHT! I always have this support group to help me along the way. Best of good news to you!
These replies have been amazingly helpful! I’m scared, and nervous for the next steps, but your sharing has helped. Thanks so much.
Mrsthehoney
I was dx March 2016 with 3b nscl. I was treated with carboplatin and taxol for 5 treatments. Radiation for 30 days concurrently 2.5 weeks into treatment my 8.5 mm tumor shrunk 75%. At 4 weeks my dr said the tumor was dead. I compleated all treatments and went home. I am Ned now and it will be 2 years in June. My doctors are very happy and amazed at my response. Your husband can beat this but he has to have a fighting attitude. Prayer and friends and family support got me through this hard time. I was scared to death until my drs had a plan to attack this demon. Prayer, support, Zoloft, and Xanax gave me the strength to get through each day. My attitude was each radiation treatment, every chemo treatment were my friends because they were helping me kill this devil. My point is, your husband is fighting for his life and he needs all these tools to do it with. May God Bless y’all in this journey and may He also heal your husband. God keep you in his arms
In Christ
Texas64
So thankful that you beat this monster. I appreciate your story. This is encouraging news! He’s got a fighting attitude, and we are ready to beat this devil.
Blessings to you for continued good health.
They removed a 4 cm mass rul and dr also removed middle right lobe and also 10 nodes which 4 came back posit e cancer on my trachea my surgeon says I'm cancer free and surgery successful, but now they recommend 3 more rounds of chemo, then after that 6 weeks of radiation to clean up maybe anything that's left.....am I going to be ok? I should be happy she said I'm cancer free...why don't I believe it
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