Radiation Therapy side effects

[janeike]

I will be starting radiation therapy soon for Stage 111a squamous cell nsclc. I have finished chemotherapy and had quite a few side effects with that. I am wondering if there is anyone out there that has done radiation therapy after chemo and have experienced any side effects. I meet with Radiology Oncologist on July 10th for discussion and markings and to set up schedule. Any and all information will be greatly appreciated.

[anrean]

You are doing the right thing by getting as much info as possible so that you can ask some of the right questions! I've had rads alone, rads before chemo and rads after chemo. The worst reaction was progressive tiredness into extreme exhaustion. Not a bad reaction and easily conquered by having a friend drive me. I also "burned" at the rads site. Tried their recommendation of AquaPur and hated it. I decided to try Bag Balm and although my doc didn't know anything about it, his colleague grew up with horses and thought it might work - it was great! Bag Balm is used by farmers to stop chapping of cow udders and for small cuts and bruises in horses - it is much lighter than AquaPur and contains a small amount of antibiotic; I used it all the time on my horses and figured it couldn't hurt.

Had a very strict routine for myself - shower close to rads time and DO NOT use any powder or lotion anywhere near the rads site. Get rads and about an hour after apply the Bag Balm. This seemed to work great.

Wishing you all the best!

[janeike in reply to anrean]

Thank you so much for your advice. Where can I find Bag Balm? I have read that a lot of people get a pretty bad sore throat. Did this happen to you? How long ago was your treatment and how are you doing now? Jane

[anrean in reply to janeike]

Bag Balm can be found at Walgreens or any farm store. Check with drug stores in your area that carry lotions, too. If you cannot find it, let me know and I will send you some. My experiences with rads were both breasts and right lung, so I didn't have any problems with my throat. Now I am dreading rads to vocal chords because I won't be able to control with happens inside me as easily. I had liver in 2002, rt breast in 2004, ovarian in 2006, left breast in 2009 and now lung ca with tumors on the vocal chords. It's been quite a journey, but so far so good. Lauri-Anne

[janeike in reply to anrean]

Wow, you certainly have been through a lot. I too have had multiple cancer diagnosis. 2002 adenocarcinoma RLL, 2009 Bladder Cancer, 2015 Melanoma, 2016 Squamous cell URL. The only diagnosis that required any treatment after surgery was the Squamous cell URL. I had mets to lymph node so that made me stage 111a. The chemo kicked my butt and I imagine that the radiation will too. That's why I am looking for information from anyone that has been through it. When do you start the treatment on your vocal chords? I would imagine that that will affect your throat for sure. I hope there is something they can give you for any discomfort. Please keep me updated on how you do and thank you so much for responding to my post Jane

[anrean in reply to janeike]

WOW - you've been through a lot, too. 15 year lung ca survivor - congrats!! Please know that rads is a cakewalk compared to chemo! I maintained a relatively normal life with rads, but chemo kicked my butt even with the neulasta. Being tired was manageable for more than 1/2 of the rads. It was toward the middle and definitely at the end that the tired changed to pure exhaustion,,,but my body was already tired, and that needs to be taken into account. I go in August to decide what to do about the vocal chords, and about the lung ca. The lung ca is adenocarcinoma but modified by a slow-growing subtype. No biopsy yet on the vocal chords - this will be my 1st 3 month visit and he wanted to see how it would grow without being invasive - my choice to not be invasive. The lung ca is in both lungs, so, well, that's just the way it goes. Already zapped one tumor with rads and it took almost forever to die. Just taking it one day at a time. I hope all goes well with you and you find the Bag Balm!! LA

[janeike in reply to anrean]

Hi Lauri-Anne, I ordered Bag Balm through Amazon. Thank you for your advice on this. It sounds like something I could use even after radiation. I will pray for you that you have an uneventful radiation therapy for you lung cancer and vocal chords. What stage lung cancer do you have?

[anrean in reply to janeike]

Hi So glad you found the Bag Balm. I use it all the time when I get a cut or chapping - it really is great stuff! In some ways I am very blessed - this ca was caught because I went to a community screening and so they were caught very early. There was a total of 13 nodules, and the one they zapped was stage 1a, There are 2 more at stage 1 and then 10 that are too small to stage yet. I'm taking a very laid back approach to this - don't want to do anything invasive or that is going to make me deathly ill. Mine are adenocarcinoma (very aggressive type) with a subtype that starts with m that I can never remember (very slow growing) so I have time. I'd like to get through the summer without doing any more treatment...I go in August 17 to see how much they have grown again. Last time they grew just a tiny bit, so maybe I really can get to September before doing anything. Yeah, I know, everyone is not happy with my attitude, but this is my 5th go round and I'm tired of chemo and rads taking away good time. I'm going on vacation next week - camping in Presque Isle, PA and in Sept going to the National Aquarium. When those are done I will start to be concerned again. A little bit angry that my spring was taken away by a very bad fall that damaged the nerves between and around the rods in my back (fractured it is 1988) and I was on 6 weeks of bed rest. Life sure is complicated, isn't it...hehehe I'm praying all goes well with you. Where are you in the process?

[janeike in reply to anrean]

Hi, you said this is your 5th go around! Do you mean that you have been diagnosed with lung cancer 5 times????? I have had cancer 4 times and think that is way too much. I had surgery in December to remove the tumor. That is where they found that it had metastasized to a lymph node so I just completed 4 months of chemo and will meet with the Radiology Oncologist on Monday to discuss the treatment plan with him. I hope that we can start the process right away. I am anxious to get this going so I can be done. I had horrible side effects from the chemo so expect to have them from the radiation as well. I am usually very positive but having gone through the hell of chemo I just know that I will get them from radiology. I hope that you enjoy your vacation. You will have to let me know how it went. I appreciate your being in contact with me. Thank you.

[anrean in reply to janeike]

Hi again! No, not 5 times with lung ca. Liver, rt breast, ovarian, left breast and now lung. Radiation is a cake walk compared to chemo, so don't get too upset about it. The biggest problems I had were exhaustion around the 15th treatment that progressed to the point I'm not sure how I got through it, but keep in mind my liver was compromised and didn't like rads and I ended up with a bile bag each time to give the liver a rest. Burned bad on the first rads, but that was the doctor's lack of knowledge - he left about 2 week after I finished! The 2nd rads wasn't so bad, especially with the Bag Balm. Of all of them, the liver was the worst - they did a radical whipple which basically means they took everything out, took 52% of my liver, bile duct, gall bladder and part of pancreas, and 13 ft of intestine, then rebuilt what was left. I was fortunate - he was so sure he got all of it that I escaped chemo and rads. Liver still acts up a lot, but I just cope with it. Wouldn't wish it on my worst enemy! I remember clearly being anxious to have everything done immediately, but I've learned that immediately isn't always necessary. I talk to my dr very openly and honestly about what I want and what he thinks needs to be done. We zapped the first lung tumor and now we can ride it out so I have some time to have fun before winter sets in. My best advice to you is to relax and not anticipate the worst. It isn't going to be fun, but it also isn't going to be that bad, either. A trick I learned was to wear button down blouses that had no metal and no bra- that way I didn't have to change into a gown. I had a window of time right after each rads where I felt okay, about 45 minutes for me and I used that time to get home and head to bed. On the days I went over that 45 minutes because I saw the dr once a week, I had someone drive me. It really isn't that bad - just roll with it and it will be over before you know it. I cried the 2nd time they told me I had to do rads - just couldn't imagine doing another 36 visits, but I rolled with it and it was over sooner than I thought. Oh, yeah, I also took the time to reward myself for each day I made it through the 2nd rads - a Dunkin Donuts iced coffee...hehehe Good trick that worked! You WILL be fine, even though it is scary. I celebrated my last day of rads with a nice dinner that weekend...anything to look forward to so that I made it to the end!

[janeike in reply to anrean]

My goodness you have been through the mill and still have a nice positive attitude! I am very impressed!!! I always try to keep it positive but sometimes the true feelings come out and I have a pity party for myself but after that I bring back the positivity. That is what keeps me going. That and my family. You are someone to admire and I am very glad that I have "met" you.

[anrean in reply to janeike]

I am glad to have met you, too! Helping and encouraging someone else always makes things better!! Don't get me wrong - I have my moments, but I've learned they cannot take over. I have a terrible fear that one of the 12 remaining lung tumors is going to win - and I'm tired after 15 years of fighting. My favorite sport - kayaking - has come to an end; I don't have the energy or stamina to do it any more and am now looking to sell the kayak and all gear. But I just switch things over to what I can do. This camping trip is going to be a lot of fun, but I know I can't keep up with my friends and worry that they will hang back to be with me instead of doing wonderful things and then telling me about them. But they are adamant that I go, so out to uncharted territory I head. The thing I dread most is someone feeling pity for me. I don't want things to change, but slowly this is the cancer that is robbing me of my life. For all the others there was a start date and an end date that were clear. This time I'm in limbo and a quick round of surgery, chemo and rads won't give me back the breath I have come to cherish. But I'm fighting to hold on to as much as I can, and I guess that is what counts most.

[Mimirussell in reply to anrean]

Good to know about Bag Balm , wish I had known about it when I was going Rad.back in 2015 .The Aqua Pur didn't work for me ,plus was greasy. Thanks for info.Mimi

[Jewilliams]

I had chemo and radiation together I am still trying to recover

[janeike in reply to Jewilliams]

That is tough doing it together. What kind of chemo did you have and how long was the radiation therapy for? What is your diagnosis?

[Jewilliams in reply to janeike]

Chemo was cisplatin and etoposide. Radiation for 30 treatments. I had terrible time with dehydration. And afterwards ended up with blood clots. Am finally getting my appetite back but still tired

[janeike in reply to Jewilliams]

I started off with cisplatin too and had such bad reaction to it that my oncologist changed my treatment to carboplatin and taxol for 2 treatments which I still had bad side effects but nothing like the cisplatin. If I ever need to have chemo again it will never be with cisplatin. I am glad that you are getting your appetite back. How long has it been since you had chemo and radiation? I will be having the same amount of treatments that you did.

[Jewilliams in reply to Jewilliams]

I had stage 3b squamous cell backcourt. Normally they don't do surgery they just treat you with chemo and radiation. My case was different as the inside of the tumor had an infection and was rotting. Every time they would biopsy I would get extremely sick as it would release that into my system

[Jewilliams in reply to Jewilliams]

Didn't mean backcourt meant nsclc. I am still suffering with extreme fatigue

[janeike in reply to Jewilliams]

I am 3a squamous cell. When did you complete your treatments? I finished chemo a couple of weeks ago and am still very fatigued and also had 2nd diagnosis of bronchitis which I am still fighting. I had surgery to remove the tumor and they found a lymph node that had it too. Not a good thing. I hope that you regain your strength soon. In the meantime I guess you have to listen to your body and rest when it tells you too. Please keep me updated on how you are doing. Jane

[janeike in reply to Jewilliams]

How long ago did you have your treatments? What state lung ca do you have and how was the radiation? I hope that you are feeling better. Jane

[Mimirussell in reply to Jewilliams]

I went through chemo & rad at same time ,chemo was easy for me ,rad. they burnt my esophagus, so I had trouble eating & drinking .33 rad treatments .It took months to heal my esophagus. I am to go on Iressa soon ,was on Tarceva since Oct .,had a lot of side effects. Just had another pet scan ,new cells pooped up since Feb. God Bless everyone with dealing with cancer .Mimi

[janeike in reply to Mimirussell]

Thanks for your reply Mimi. I hope that your esophagus is fine now and I wish you good luck with the rest of your treatments. I hope that you have little to no side effects. Jane

[Mimirussell in reply to janeike]

Thank you Jane ,I am soon to go on Iressa, just got off of Tarceva .My pet scan showed new cancer cells ,so here I go again .God Bless you & everyone with Cancer Mimi

[ThePurplePlace]

For me the worst part of Radiation was the intense "fatigue" of going daily and at that time, I was driving myself back and forth to each appointment. (NOTE: I did not want my Hubby to have to take all the time as "Vacation" time and we had a trip planned that was coming up right after I finished Radiation). In hindsight I wish I had known how fatiguing it was going to be and if I had known, I would have asked family/friends to help me out with rides. The hard part is that we are young and all my friends and family work and most have full time jobs, so getting time off can be a challenge and my center did not offer any "night" appointments. I was perfectly fine to drive, but I do think doing the driving did add the fatigue, by the end I could NOT wait for it to be over.

As for the "burning" esophagus (his can happen and is a know side effect for any "chest" radiation). My Rad Onc gave me an RX for "Magic Mouthwash" which I was able to fill at my local pharmacy -- drugs.com/pro/first-mouthwa... - it helped. It contains licodaine and helps sooth that area. I also made sure I ate soft foods and nothing spicy or "rough". My skin did not burn too badly, but I was also given a cream from the Radiation center called "My Girls Skincare", which was designed for Radiation Burns. Here is a link mygirlscream.com/, to purchase it from Amazon, they also sell a "My Guys" version.

After the first few visits I learned to come home, lay down and take a nap and that did help the fatigue. The actual "appointments " after the initial set up, are fairly brief. I was only there for about a total of 30 minutes each time and that included checking in and changing into a special "top" that they gave us there. The commute was about 25 minutes each way and because the appointment times varied (we did not get to pick our times) there were days I was traveling back and forth during rush hour and that made those days even worse.

I was SO happy when I was finally done -- it was the one treatment I really dreaded and it really wiped me out. More than chemo, and I think it's because of the commute. My Chemo and all my other tests are done at my local center and that's only 10 minutes from home -- so much better. Of course, I had just finished Chemo at that time, so I'm sure that played a role in my fatigue levels....! If I did not have the extra commute, I'm sure it would have been much easier...

Good Luck,

Lisa

[janeike in reply to ThePurplePlace]

Thank you so much for your information Lisa. It sounds like fatigue is going to be my biggest worry. I had that really bad from chemo but I had most all side effects from chemo! Starting to feel pretty good now except for neuropathy. Hoping that will subside soon. Have you had any scans to see if you are "all clear"?

[ThePurplePlace in reply to janeike]

Yes, I have had several scans/MRI's since my diagnosis which was back on 3/27/15. I have Stage IV NSCLC and also started this battle with brain tumor and Pulmonary Embolism. I was very suddenly, very ill and the only symptoms I had were two days of what we thought was vertigo. Never have had ANY signs or symptoms of Lung Cancer, so to be Stage IV and had it already spread to my brain, was quite a shock.

Now, I am doing well, my brain tumor was very successfully treated with Cyberknife and I have had Chemo, Radiation and most recently Immunotherapy (Opdivo) for my Lung Tumor (nodes). I now only have one teeny 'blip' that shows up on my latest CT scans and my Oncologist feels it's very likely just a bit of scar tissue for my main lung tumor. My nodes are all clear and my brain tumor has been clear for over two years now. I have been stable for almost 11 months and have been off treatment since last August. I'm enjoying life and love spending time with my very first grand baby ( a little girl who was born in February), she's like a dream come true and something I truly never thought I was see when I was diagnosed with late stage cancer 2+ years ago. I feel very thankful and lucky to be doing well. I did reach NED the first Summer (2015) after I finished Chemo (Carbo and Pemetrexed) but then had progression in the Fall, which is went I was send for Radiation (followed by the Opdivo). I'm MUCH better now and again having a wonderful Summer and living my life...!

I hope you too will have excellent results - and won't find it as exhausting as I did. Some people find it a "breeze" as compared to Chemo -- however, we are ALL different and we all react different to each treatment. Best wishes....

~ Lisa

[janeike in reply to ThePurplePlace]

Lisa, I am sooooo happy that you are NED and that you have that cute little blessing of a granddaughter! You gave it the good fight and you won! That is the way to do it; I will post how I make out with the radiation. Just anxious to get it started and be done with it. Thank you so much for sharing your story Jane

[ThePurplePlace in reply to janeike]

Hi Jane,

just a little FYI -- I am not currently NED (but I am stable) and I'll happy take Stable any day over progression. I did reach NED the first summer after my diagnosis, but then had progression the Fall. Thankfully, I did respond very well to Opdivo, (despite some side effects) and I am doing well and have been "Stable" and off treatment for almost 11 months now! Something I truly never imagined when I was diagnosed with Stage IV NSCLC back in March of 2105!!

Lisa

[janeike in reply to ThePurplePlace]

Lisa, I will pray that you remain stable or better yet, that you will get to the NED stage! Won't that be something to celebrate but in the meantime, we'll go for stable and no treatments to boot! Thank you for sharing that with me. Jane

[cloft]

I did have radiation and developed pnemonituts. You really need to trust your medical team and tell them any little changes you are experiencing. Most times it is nothing but then it could be something that can develope into something. I know some people had skin issues. My doc told me to cover back and chest with pure Alo Vera daily. It worked no issues but you do need to stay out of sun or wear protective clothing. You can do this . Hang in there and prayers heading your way.

[janeike in reply to cloft]

What are the symptoms of pneumonitis and how was it treated?

[ThePurplePlace in reply to janeike]

My Pneumonitis (low grade) was totally asymptomatic - it was found each time during my routine CT Scans and in my case was caused from Nivolumab (Opdivo) and is one of the known and common side effects, also known as "Immune-Mediated Pneumonitis". It was also be caused by Radiation and if that's the case it's typically referred to as "Radiation Pneumonitis". Because mine was "low grade" and asymptomatic, it did not require treatment, other than to stop the Opdivo treatments to allow it to clear. If it were to go to a higher grade, my Onc told me I would then need to treat it with Steroids (Prednisone) and possibly have to stop Opdivo permanently. It can be a very serious side effect. The symptoms I was told to watch for would be a cough, shortness of breath, chest pain or discomfort. I've been very fortunate and even though I had Stage IV Lung Cancer, I've never had any symptoms from the cancer or the Pneumonitis.

Good Luck on Monday -- I'm sure you'll learn a lot more once you go for that appointment and have your markings and set up started.

[janeike in reply to cloft]

Thank you so much for your reply and the prayers! I do believe in the power of prayer. I pray for you and all of the others in this group that are fighting this nasty disease. God Bless

[Rita91]

I'm in the process of getting whole brain radiation. This is my 2nd dose of radiation, my 1st being in Jan. of 2015. The initial treatment (10 days-10 mins a day) followed brain surgery to remove a tumor. I was left with neuropathy on the right side of my body which I haven't really found relief from having tried several different scripts (each with there own side effects) Because of metastases I'm now undergoing wbr and find the neuropathy is worse along with my balance is compromised and my eyes are irritated. I really don't know (and haven't been able to find out) if these conditions will go away.

[katherineNED]

I had radiation after chemo (cisplatin side effects were horrible!). I was scheduled for 30 treatments (5 days a week for 6 weeks) and the commute was during rush hours which some days took 3-4 time longer than normal. The stress of the commute plus the worry of getting in on time wore me out! I had an irritated esophagus from the radiation. It made swallowing difficult so I stuck with soft and cold foods whenever possible. This didn't happen until half way through treatment. You can also get something called magic mouthwash (prescription) that will numb your throat. I didn't like the taste or the numbing before eating. He then prescribed an oxycodone liquid. It was OK but I found eating the soft food and cold food helped more. I developed radiation pneumonitis (still have it from treatment that ended 10/16!). It was pretty bad for the first 2 months. I had a high fever, shortness of breath and extreme fatigue. Went to the emergency room and was given antibiotics and fluids. Saw my primary after that and he diagnosed the radiation pneumonitis. I was on prednisone for almost 2 months and an antibiotic for a couple of weeks. I usually took a nap during the days I had radiation but my energy was still low. Make sure you drink plenty of fluids. I had to get fluids towards the end of treatment. I found out on my last CT scan a few weeks ago that I have radiation pneumonitis still! The only symptom I have now is some pain in the area and difficulty taking a full breath sometimes but at least it isn't as bad as it was originally and really didn't know I had it until I got the results of the CT scan. Best wishes on your treatment. It sounds as though you're a cancer warrior so I imagine you'll sail through radiation!

[janeike in reply to katherineNED]

Thank you so much for this information! Yes I am a cancer warrior and will fight the good fight this time as well. With all of the cancer that I have had, I have not had to go through chemo and radiation so this is all so new to me and I am so grateful to you and everyone else that has reached out to give me advice. I will certainly keep you all updated and look forward to anymore tidbits of information that you can give.

[Ruthie1950]

I had 34 treatments of radiation. I had 12 treatments of chemotherapy. I was very sick from the chemotherapy but the radiation side effects were extreme exhaustion. I dealt with the radiation far better than I did the chemotherapy. If you feel tired, don't be ashamed to lie down and rest. Your body is going through a lot and you need to listen to it. Your energy level will increase after the treatments are complete.

May God bless you through this difficult time.

[janeike in reply to Ruthie1950]

Thank you Ruthie. I have been tired from the chemo among other side effects so I guess I am used to it. I just hope that all of these treatment have done the trick and all of the cancer is gone. Looking forward to having some sort of scan so we will know.

Again, thank you and I will post how things go.

[bri9876]

I had lung radiation then 10 sessions of brain radiation that made my hair fall out. Now I can't walk but they told me whole brain radiation vs.death in about 8 weeks . My husband and l decided to take our chances.