Faith&Hope Posted October 16, 2018 Posted October 16, 2018 Hello, all. Husband was diagnosed back in June/July, went through CTs, 2 Biopsies. There is 1 in lung (about one inch? Not operable), the other between lungs (9mm+/-) Just finished 39 radiation and 8 weekly chemo. Getting ready for 2 full strength chemo 3 weeks apart and then one year of Immunotherapy (Durvalumab sp?) coming up. Sorry if I am not familiar with all the terminology, but maybe I don't want to. (Maybe I am still in partial denial.) My question: Has any one of you survived this? My husband is in his late 60s, but was healthy and working everyday before this. In addition to praying all the time, I would like to talk to people who's been through and maybe support one another. God bless and keep each one of you.
Robert Macaulay Posted October 16, 2018 Posted October 16, 2018 Just finished very similar treatment this year and now on Durvalumab started late August on now on #5 infusions next week. The two full strength chemo were challenge for me with the side effects but do not last and my hair is now growing back. lol. You can read about this drug and posts on myself and one other on this site getting this drug. There is very good article on this drug and well worth the read on the Durvalumab posts. Welcome # 3 Durvalumab member Bob
Faith&Hope Posted October 16, 2018 Author Posted October 16, 2018 Thank you for your reply, Bob. My husband had a difficult time after the last weekly chemo and ended up in the hospital for 5 days (fever and very low WBC) and before they gave him his last weekly chemo, the doctor gave him 1 unit of blood transfusion. So I am concerned about the 2 full chemo and we have a doctor's appt on Thursday and hope she will go over the details of her plan of attack. (If not, I will ask.) So we are looking forward to being done with chemo and receive Immunotherapy every two weeks. I will go read posts about you and the other and the info on this drug. Thanks again. Signed, Durvalumab member #3's wife.
LexieCat Posted October 16, 2018 Posted October 16, 2018 Hi, and welcome! Yeah, Bob and our other Durvalumab member, Kleo, will be your best resources on this. In addition to which, their posts are HIGHLY entertaining! There IS hope--the progress in fighting lung cancer these days is amazing! Glad you found us!
Robert Macaulay Posted October 16, 2018 Posted October 16, 2018 If your husbands blood work is good and the doctors give the go ahead I would take the two full doses. They asked me prior two the second dose if I wanted to continue and I am glad I said yes. Bob
Faith&Hope Posted October 16, 2018 Author Posted October 16, 2018 3 minutes ago, LexieCat said: (Oops. Didn't mean to click on quote.) Thank you, LexieCat! Thank you for your encouragement. Most of the time, I feel hope and then I happen to hear other people talking negatively and then get scared. So this is a nice place.
Faith&Hope Posted October 16, 2018 Author Posted October 16, 2018 Robert Macaulay, thank you for your advice. It will be tough but I agree that he needs to receive two full dose. I just pray that he does not end up in the hospital again with Neutropenic something.
Steff Posted October 16, 2018 Posted October 16, 2018 Faith&Hope, My mom is currently on immunotherapy. Although her journey is different, her outcome is one you were asking about....she received alimpta/carbo (chemo) + Keytruda (immunotherapy) for the first 6 sessions, then continued with Keytruda only. She had a tough go in the beginning - about halfway through the first 6 sessions, she was hospitalized for 2 weeks, she was full of infection and had pneumonia. It was a scary time. But she survived and 6 weeks later was at a Jimmy Buffett concert with me - she was on steroids, but she was there and having a blast. So, even if the chemo beats down your husband, he can bounce back. It may take some time and it may be very scary, but he will recover. If your husband's experience with immunotherapy is similar to my mom's it will be rather uneventful compared to the time on chemo. Take Care, Steff
Faith&Hope Posted October 16, 2018 Author Posted October 16, 2018 10 minutes ago, Steff said: Faith&Hope, My mom is currently on immunotherapy. Although her journey is different, her outcome is one you were asking about....she received alimpta/carbo (chemo) + Keytruda (immunotherapy) for the first 6 sessions, then continued with Keytruda only. She had a tough go in the beginning - about halfway through the first 6 sessions, she was hospitalized for 2 weeks, she was full of infection and had pneumonia. It was a scary time. But she survived and 6 weeks later was at a Jimmy Buffett concert with me - she was on steroids, but she was there and having a blast. So, even if the chemo beats down your husband, he can bounce back. It may take some time and it may be very scary, but he will recover. If your husband's experience with immunotherapy is similar to my mom's it will be rather uneventful compared to the time on chemo. Take Care, Steff How kind of you to share your mom's experience. It does sound scary when she was hospitalzed, but very encouraging that your mom was at a concert only 6 weeks later. Wow. We asked about flu shot and our onco said that he could get the flu shot a day before his first full chemo. I am not so sure, so we will ask her again about that when we go in Thursday. Maybe she will go ahead and order an extra blood test to make sure? I will let y'all know what happens, just in case it helps someone else. PS: At the advice of his Primary, hubby received a 6 year pneumonia shot when it was suspected to be LC.
Steff Posted October 16, 2018 Posted October 16, 2018 And immunotherapy is even less picky - my mom was told she should get her flu shot asap, but could get it anytime. They did it in the infusion room for her, right after her Keytruda drip.
Faith&Hope Posted October 16, 2018 Author Posted October 16, 2018 That's wonderful that they did it right there in the infusion room. I am going to ask them about it. (Hubby is not as vocal as I am, lol) Also, I am finding that people who work in infusion rooms are very caring special group of people.
BridgetO Posted October 16, 2018 Posted October 16, 2018 Hi Faith and Hope, Faith and hope are good things to have. I think you'll find a lot of them here on these forums, as well as support and information. I haven't had experience with the durvalumab. My lung cancer was stage 1a and I needed only surgery. However, I have had two unrelated other cancers, one of them advanced and with a "dismal prognosis", so I have been through radiation alone , concurrent chemo and radiation, and chemo alone. I've had neutropenia (once down to ZERO neutrophils) and needed tranfusion for low red blood cells. That was all 7 years ago. My lung cancer was 2 years ago. I am now NED (no evidence of disease) on 3 cancers. So I believe in hope! Let us know what questions you have and how we can support you. And I agree that durvalumab #1 and #2 (Bob and Kleo) are entertaining! Bridget O
Faith&Hope Posted October 16, 2018 Author Posted October 16, 2018 BridgetO, thank you. When I let my imagination run wild, I get scared, really scared. I will no longer google ANY statistics for sure. So that's how I came up with my name here - I think all of us need faith and hope. Y'all have made me feel better already knowing that #1. We are not alone #2. If I have any questions, so many of you have been through my questions and are willing to answer and help. #3.This is a very good support site. I've lurked for a while, but I am glad that I decided to join in. Who knows, I may one day be of some help to someone in return. When something like this hits you or your loved ones, the whole perspective changes.
Tom Galli Posted October 17, 2018 Posted October 17, 2018 Faith&Hope, I believe your husband will have little problem with 2 infusions. There may be side effects, but these are expected and medication is very effective in controlling problems. As for immunotherapy, it is a godsend. Immunotherapy has widened the survival curve substantially for late stage lung cancer diagnosis. Now it is successfully being used to treat small cell, an unusually resistant form of lung cancer. Keep your faith and hope. These are important. You both will be challenged. And after treatment there will be a new normal to adjust to. But, you can do this thing. To add dimension to your hope, if I can live so can your husband. Stay the course. Tom
Faith&Hope Posted October 17, 2018 Author Posted October 17, 2018 Thank you, Tom. I have been praying on and off that my husband will be able to withstand the 2 full chemo, as he is still very weak 2 weeks after the last weekly chemo and radiation. And you sounding so confident about him being able to get through it made me smile and feel better. Thank you. You should know, having been through so much. I read a little about Immunotherapy and it sounded pretty good, but had no idea that it is being used to also treat small cell (which I didn't know was so resistant). It must be really good stuff! Yes I will keep my faith and hope, even if with clenched fists on some days, but I will. Thank you again for such kind words and encouragement. You keep on living and helping others, we will keep on fighting the battles until we win the war. Thank you again, Tom.
Kleo Posted October 17, 2018 Posted October 17, 2018 Hi Faith&Hope, I was initially given the same treatment plan. I was Stage 3B...or 3A...I'm still not sure which. My lung tumor was much larger though! I didn't end up doing the concurrent chemo and radiation, but I did do 4 full dose chemo..then followed up with 35 radiation. Do you know the name of the chemo he's been on? I was supposed to get Taxol initially but they changed it. Instead I had 3 Cisplatin & 1 Carboplatin, combined with Alimta. I did feel pretty icky for the first week following infusion, but then I was ok for the next two weeks. Having the 3 weeks to recover in between doses really helped! I've now started my durvamulab...had my first dose last Wednesday! Gosh that's a funky name they came up with for it though. Hard to say!.😜 Even my infusion nurse had trouble pronouncing it!! haa!
Faith&Hope Posted October 17, 2018 Author Posted October 17, 2018 Kleo, I believe he's been on Carboplatin and Taxol combo along with radiation. I do hope you and Robert Macaulay (and soon to be durvamulab member #3, my hubby) get the best results from it and become NED status ASAP. Best wishes to all three of you! When the ONC said the name, I tried to repeat after her, but by the third time, I gave up, LOL! I got as far as Dur-Va?? She ended up giving us a printout of it. By the way, I will now go read the Durvamulab thread.
Robert Macaulay Posted October 17, 2018 Posted October 17, 2018 1 hour ago, Kleo said: i Faith&Hope, I was initially given the same treatment plan. I was Stage 3B...or 3A...I'm still not sure which. My lung tumor was much larger though! I didn't end up doing the concurrent chemo and radiation, but I did do 4 full dose chemo..then followed up with 35 radiation. Do you know the name of the chemo he's been on? I was supposed to get Taxol initially but they changed it. Instead I had 3 Cisplatin & 1 Carboplatin, combined with Alimta. I did feel pretty icky for the first week following infusion, but then I was ok for the next two weeks. Having the 3 weeks to recover in between doses really helped! I've now started my durvamulab...had my first dose last Wednesday! Gosh that's a funky name they came up with for it though. Hard to say!.😜 Even my infusion nurse had trouble pronouncing it!! haa! Dur va lum ab The instructions were in the goody bag. lol
Kleo Posted October 17, 2018 Posted October 17, 2018 But Bob...I didn't get a goody bag! 🤣 I'll practice pronouncing it. Use it in sentences and stuff. She sells durvalumab down by the sea shore. How now brown durvalumab cow.
Robert Macaulay Posted October 17, 2018 Posted October 17, 2018 My nickname for the drug is Pacman. And it goes where no man has gone before.
Faith&Hope Posted October 17, 2018 Author Posted October 17, 2018 I like that name Pacman. Shoot them and gobble up those cancer cells, Pacman! Search and destroy!!!
Robert Macaulay Posted October 17, 2018 Posted October 17, 2018 And it goes were no other drug went looking for the bad guys that were hiding,
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