catlady91 Posted October 8, 2021 Share Posted October 8, 2021 Hi Justin, I'm sorry to hear that the diagnosis is lung cancer but on the bright side, the treatment plan is with curative intent which is great. You're probably going to have the same treatment as my mum had. My mum had radical chemoradation followed by immunotherapy. My mum is currently NED (no evidence of disease). I agree with the others that having a treatment plan helps to take away the anxiety. Stay positive and keep us updated xx LouT and Judy M2 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted October 9, 2021 Author Share Posted October 9, 2021 Hi thanks for the reply, the radical treatment does sound a bit daunting how was your mum through it, I'm glad she is NED that's brilliant you must all be so relieved, i think being told you will be treated with curative intent really does help with the anxiety and overall mental stress,take care. Many thanks Justin xx ChiMama, catlady91 and LouT 3 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted October 11, 2021 Share Posted October 11, 2021 On 10/9/2021 at 8:47 PM, Justin1970 said: Hi thanks for the reply, the radical treatment does sound a bit daunting how was your mum through it, I'm glad she is NED that's brilliant you must all be so relieved, i think being told you will be treated with curative intent really does help with the anxiety and overall mental stress,take care. Many thanks Justin xx I won't lie the treatment was tough for my mum as she had a lot of side effects and unfortunately some of them are long lasting but generally now her health is really good. However, it doesn't mean that you will have lots of side effects or will struggle with treatment. Each person is different and the oncologists wouldn't be giving you such radical treatment if they didn't think you could handle it. Unfortunately some people are too unwell, too weak and too frail for radical treatment and are given only palliative treatment. The doctors said that my mum was/still is in extremely good nick for her age. I wish you all the best with your treatment. It sounds daunting but stay positive and think that this treatment is killing the cancer. No pain, no gain. I agree that being told that the treatment is with curative intent is a lot more hopeful. The first doctor (who wasn't the oncologist- he was the lung specialist) said that my mum's cancer is treatable but not curable which was very hard and bleak news to hear but the oncologist told us that my mum's treatment is with curative intent which made us feel far more hopeful. Of course cancer that isn't curable isn't necessarily a death sentence these days. It seems in the US some doctors are of mixed opinion as to whether cancer is "curable" and some don't use the word "cure". Some people on here, even long term survivors don't like to use the word "cure". I hope you have supportive friends and family around you to help you get through treatment. And of course you always have us. Keep us posted. LouT and Judy M2 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted October 14, 2021 Author Share Posted October 14, 2021 Hi thank you for the reply your message was very helpful and it's nice to hear positive stories and good news, I will keep you updated Kind regards Justin LouT and catlady91 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted October 23, 2021 Author Share Posted October 23, 2021 Hi just to let everyone know I'm starting treatment on Monday, 6.5 hours chemotherapy I'm hoping the oncologist will have the bio marker results and that I'm a candidate for immunotherapy treatment as well which may cut the the chemotherapy down, Many thanks Justin Tom Galli, RJN and LouT 3 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted October 23, 2021 Share Posted October 23, 2021 Good luck to you. One of the resources you might want to check out is a book by Rebecca Katz called “The Cancer Fighting Kitchen”’. It’s loaded with good recipes and tips for managing nutrition during chemo. I found it better than any of the hospital hand outs. Keep us posted. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted October 23, 2021 Share Posted October 23, 2021 Justin, I'll join my Lungevity sister in wishing you "Good Luck" and please follow some of the recommendations you read about or even find on our forums. But always be willing to share symptoms with your medical team so they know what is going on. All digits will be crossed for you. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 1, 2021 Author Share Posted November 1, 2021 Hi and thank you for the support, I started the treatment last Monday I'm having cisplatin and vinorelbine chemotherapy via iv for 6 hours and I start the radiotherapy this Thursday I have to say I thought the first couple of weeks would be a bit easier but definitely is tough, I'm having a chemotherapy tablet tomorrow instead of the iv, the side effects seem to be a bit brutal but hopefully it will be worth it, all the best to everyone Take care Justin Quote Link to comment Share on other sites More sharing options...
LouT Posted November 1, 2021 Share Posted November 1, 2021 Justin, Sorry to hear about the side-effects. Please always remember to keep your medical team updated on the effects you feel as there are often things that can be done to ease the symptoms. BTW, if you share some of them here you'll likely find folks who have also experienced them and can offer some tips and tricks on easing them. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted November 1, 2021 Share Posted November 1, 2021 I always recommend palliative care. And acupuncture can help. I should have engaged palliative care 6 weeks earlier than I did. I also went through rough times with chemo and radiation but have come out on top. Hope you do too, Justin. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 13, 2021 Author Share Posted November 13, 2021 Hi everyone, Quick update on everything so far, I've done seven radiotherapy sessions and 2 weeks of chemotherapy, unfortunately my white blood cells are to low so not sure if treatment will go ahead as planned on Monday, they told me a blood transfusion will be done if necessary next week, I asked about the biomarkers but nothing yet. I hope everyone is well take care Justin LouT 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted November 13, 2021 Share Posted November 13, 2021 Justin, In my chemo-radiation treatment, both my red and white cells dropped dramatically. I had injections of Neulasta and Procrit each week and these two drugs allowed me to keep on therapy schedule. Stay the course. Tom LouT and catlady91 2 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted November 15, 2021 Share Posted November 15, 2021 Hi Justin, sorry to hear that your white blood cell count is low. I think it's normal that chemo depletes your body. My mum had an extremely low level of magnesium after chemo to the point that she had to be hospitalized. Luckily she pulled through. More amazingly that after all the treatment that my mum recieved, her blood results were completely normal. How are you tolerating treatment so far? It's a rough ride but stay strong. Hopefully the blood transfusion will make your body stronger and you'll be able to resume treatment. Mum found the chemo hell but the radiotherapy wasn't as bad. She still had side effects but they weren't as bad as chemo. As for the biomarkers test, maybe they already did it. In my mums papers they wrote her cancer subtype and EGRF wildfire and PDL1 80%. I had to Google what it all meant but those are the biomarkers. You mentioned that you'll be having immunotherapy so it's likely that they've already done the biomarkers. They wouldn't be able to do the immunotherapy without knowing. Best to ask your oncologist though. I find in the UK, doctors don't really explain anything to patients. My mum always writes down questions to ask when she has an appointment. Thanks for keeping us updated. I'm wishing you lots of strength. Please stay in touch and keep on updating us. Xx LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 15, 2021 Author Share Posted November 15, 2021 Hi Thanks to everyone for the support, the chemotherapy has thankfully gone ahead despite the bloods being low, I have a transfusion booked for next week, yhe chemo is a bit rough definitely but it is bearable, I have asked again regarding the biomarkers and the oncologist said the results still aren't back yet, as soon as I get any more information I will update, I'm so pleased your mum has got through this and is now enjoying her life again x, many thanks Justin catlady91, LouT, Tom Galli and 1 other 4 Quote Link to comment Share on other sites More sharing options...
catlady91 Posted November 15, 2021 Share Posted November 15, 2021 I'm glad that you're well enough to go ahead and that the chemo is bearable. Everyone reacts differently to chemo. My mum tends to have a lot of side effects with most things. She found the immunotherapy side effects tough too but some people get few or little side effects on immuno. Mum has her scan coming up next week so I'm feeling really nervous. I think I worry more than mum about it. She's been fine health wise so pray to God she's still NED. LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 16, 2021 Author Share Posted November 16, 2021 I hope everything goes well for your mum and all good news, I know how difficult it must be for family members I know how worried mine all are, but stay positive for the news you all deserve. Take care Justin xx LouT and catlady91 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 21, 2021 Author Share Posted November 21, 2021 Hi I had the blood transfusion done and its definitely made a huge difference to my skin colour nowhere near as pale, unfortunately my biomarkers came back negative for immunotherapy so a bit worried what may happen after the chemotherapy and radiotherapy treatments are finished, the radiotherapy has caused my chest area and oesophagus area to be really sore to the point where eating is really difficult and swallowing has anyone got any suggestions on how make it a bit easier to put up with, many thanks Justin Quote Link to comment Share on other sites More sharing options...
RJN Posted November 21, 2021 Share Posted November 21, 2021 Glad to hear the transfusion helped. Sorry to hear you are not a candidate for immunotherapy. Did you get any info on other bio markers, such as KRAS or EGFR mutations? If you have these, you could be a candidate for targeted therapies. I was told I can have a new targeted therapy called Sotorasib as a third line after immunotherapy and chemo because I have the KRASG12C mutation. Rower Michelle and LouT 2 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted November 21, 2021 Share Posted November 21, 2021 Ugh, esophagitis. I had a severe case of it and know how you feel. I always suggest a palliative care specialist to get that pain under control. I couldn't tolerate the usual opioids like oxycodone, so I ended up on methadone, which controlled my pain well. All the advice to eat soft foods, stay away from spicy foods, etc. was irrelevant for me because I couldn't eat or drink, and what I could tolerate changed hour by hour. I did eliminate dairy because of the acid reflux the esophagitis caused. I also took pantoprazole (prescription anti-acid) for a while. You'll want to stock up on Ensure in case eating is too difficult. If you get dehydrated, ask your medical oncologist for hydration at your infusion center. I went 3x a week. Get that pain under control quickly so it doesn't cause other complications. The good news is that the esophagitis is temporary. I had it for 5 months, but remember, I had a terrible case. I know of others who have it for only a week or so. Hope you're in that group. BridgetO and LouT 2 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted November 21, 2021 Share Posted November 21, 2021 Judy is always a good resource for these types of issues. In addition some people have also used Manuka Honey with a high floral count US equivalent of two teaspoons twice a day in warm water to aid the healing process too. LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 26, 2021 Author Share Posted November 26, 2021 Hi and thank you for the replies,I have been given some antacid and anesthetic medicines but it's not really sorting the pain out, I only have 3 more radiotherapy treatments left so hopefully it will get better soon, the oncology team have said the cancer is shrinking already and that they are really pleased with the outcome so far, I finish the chemotherapy on the 24th December so hoping for a better new year lol, Kind regards Justin LouT, PaulaC and LeeLee1908 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted November 26, 2021 Share Posted November 26, 2021 Justin, It's good news to hear any tumor shrinking. Hang in there as so far the result sure seems positive. Lou Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 26, 2021 Author Share Posted November 26, 2021 Thanks lou it definitely does make you feel like everything is worth it LouT 1 Quote Link to comment Share on other sites More sharing options...
PaulaC Posted November 26, 2021 Share Posted November 26, 2021 (edited) On 11/21/2021 at 12:45 AM, Justin1970 said: Hi I had the blood transfusion done and its definitely made a huge difference to my skin colour nowhere near as pale, unfortunately my biomarkers came back negative for immunotherapy so a bit worried what may happen after the chemotherapy and radiotherapy treatments are finished, the radiotherapy has caused my chest area and oesophagus area to be really sore to the point where eating is really difficult and swallowing has anyone got any suggestions on how make it a bit easier to put up with, many thanks Justin Hello Justin, it’s been a bit since I’ve been in here but was reading through your post. I wanted to let you know that I went through the same diagnosis. Diagnosed on Feb 13, 2018. They found the spot during a X-ray Dec 29, 2017. It does take a while to get things going. Stage 3b and told no chance for surgery. The main tumor was in my left upper lobe and 3 lymph nodes in the center of my chest. I was given a cocktail of Carbo/Toxal and 28 days radiation. My esophagus was a huge problem and I actually had to go see a digestive health dr to help me swallow. I went in twice for her to stretch my esophagus. They challenge was keeping my strength up. I drank a lot of ginger ale and water. I tried every type of ice cream, anything to get my calories. Like you I had no markers. I went through the whole treatment only missing one chemo day due to low white count. I finished radiation and remember being so weak I thought I was hiking a mile into the center. I know it was a long story but the end results were they were able to shrink the tumor and the radiation took care of the lymph nodes. I was able to have the surgery which removed my upper left lobe and the effected lymph nodes. I’ve been NED since Oct 2018. the biggest thing for you is figure out what you can swallow and if you have any questions just ask me. sending positive and healing thought your way Paula Edited November 26, 2021 by PaulaC LouT 1 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted November 27, 2021 Author Share Posted November 27, 2021 Hi Paula thank you for the reply and the support,when you here good stories it really does help and make things worth doing no matter how difficult, I'm so pleased you are well and getting on with your life after such along and hard journey, I honestly think if my esophagus wasn't as bad I could manage the rest of the side effects alright but now it is bad even when I'm not swallowing or eating I do have pain relief but it's not really working hopefully it will start to get better when the radiotherapy has finished next week, I don't know if they will offer surgery after this but I would like it removed if possible did they remove your lymph nodes aswell, thank you for messaging me it really helped take care, All the best Justin x LouT 1 Quote Link to comment Share on other sites More sharing options...
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