AMay Posted December 20, 2016 Posted December 20, 2016 Hi guys I originally posted in the 'Introduce yourself' section and this is where we are now.. My mum has stage 3a adenocarcinoma NCSLC, treatment plan was put in place, due to a lymph node in the mediastinum being affected mum couldn't have surgery, so it was agreed mum would have intense chemoradiation. 30 rounds of radio administered every day Mon-Fri for 6 weeks and three rounds of chemo (week 1 carbaplatin and vinulerbine week 2 vinulerbine week 3 chemo free week - repeated 3 times) She started this treatment on 15th November and in the doctor's words is doing 'marvellous' having no side affects apart from indigestion. This has helped us all keep upbeat that my mum is still able to carry on doing everything she normally would with no fatigue or sickness as we were orginally prepared she may suffer with as a result of the intense treatment. Mum finishes her last radiotherapy session this coming Friday and has her third and final round of chemo starting on 29th Dec. We met with the doctor's registra today as we usually meet with the doctor every Tuesday just to touchbase. However, from speaking to the registra today, me and mum came away feeling a little disheartened. I said that I imagine we can't expect for all of the cancer to have gone after treatment but hopefully notice a shrinkage so where do we go from there, and he went on to say 'unfortunately with lung cancer, if it's not cut out then it's rare it will ever be cured, it might be a case of hopefully keeping it stable.' Mum will have a scan in a few weeks time as treatment can carry on working after its finished but if we go and there's a shrinkage but it is still there, I know both my mum and I then want to explore what's next. Is there anyone who has had chemoradtion who can provide some insight? How did it work for you? Did you require further treatment, if so what treatment did you have? I'm interested in talking to the doctor about Immunotherapy, however in the UK I know it's not readily available as such. We just want it gone, all gone!! Thank you in advance
Tom Galli Posted December 20, 2016 Posted December 20, 2016 AMay, Your mom's completed first line treatment -- the standard of care for non-surgical treatment -- and unfortunately her outcome is typical for lung cancer: little or no improvement. So to your question what is next. Targeted therapy: if her tumor displays markers (initial biopsy diagnosing adenocarcinoma may have included testing for tumor markers) that suggest a mutation, it may respond to targeted therapy. Here is information. Chronic disease: if her current first line treatment shows shrinkage, it may be possible to design a program of infusion with carboplatin and vinoreibine that is administered to hold her tumors in check. Some I know have been having chemo for years and it continues to hold tumors where they are thus allowing a near normal life. Clinical Trial: I don't know much about the UK medicine system but perhaps your mom qualifies for a clinical trial -- introduction of new treatment means or process into the medical system. Here is information. Immunotherapy: Do explore it. Do talk to a doctor. New advances are happening everyday. Here is information. But, even this is outdated because of frequent medical advances. I set my Google News App to report on lung cancer advances and almost everyday something new pops up in immunotherapy for lung cancer. How did it work for me? After metastasis to my left lung after a right pneumonectomy, my oncologist's approach was to keep trying chemotherapy as long as it showed an effect on the tumors till something "popped out of research." The something for me was CyberKnife. I had six cycles of taxol and carboplatin and after recurrence, six more cycles with the addition of the oral chemotherapy drug Tarceva. These knocked back my tumors but did not eliminate them. The CyberKnife did. This treatment spanned 28 months for me so persistence and patience was required. I completely understand you wanting it gone but you are involved in a cricket match, not a horse race. Lung cancer is persistant and you and your mom need to display more persistence. Stay the course, and do have a joyous Christmas! Tom
AMay Posted December 21, 2016 Author Posted December 21, 2016 Tom, as before, thank you for your detailed reply. I know I'm frantic, I just feel scared and I need to compose myself so I can carry on reassuring my mum confidently based on facts. I feel so sad and angry for her that right before treatment has finished the registrar in a word has said but it's not going to cure it. Surely there are people out there that do beat this crappy disease who haven't had surgery. As you say about Cyberknife. I've been exploring that. I wonder if there's a way that can eradicate the cancer from the gland in the middle of the chest because then mum would be a candidate for surgery to remove the tumour in her lung. Undortunatley mum's test can back negative for a mutation. We're never giving up, I know it's going to take time and patience. I just wish the attitude of the registrar reflected our determined approach to this. Merry Christmas to you and here's to a happy and healthy 2017. Tom Galli 1
Tom Galli Posted December 21, 2016 Posted December 21, 2016 Amay, I well understand frantic and scared, also sadness and anger. All are, unfortunately, common symptoms with lung cancer. I feel hampered in that I don't really understand the UK medical system so I can't help you in discussions with the registrar. In truth, I don't know what a registrar is in your medical system. We deal directly with our physicians and hospitals without intervention (for the most part) from third parties. Eric Byrne is a UK moderator of our forum. Perhaps you might message Eric, explain your discussion with the registrar, and see if he can help you negotiate approaches that might be beneficial to your mother. To connect with Eric, click on "Staff" and select the envelop icon under his name. I'll message Eric in advance and give him a heads up. Stay the course. Tom AMay 1
AMay Posted December 21, 2016 Author Posted December 21, 2016 Hi Tom It's the senior training grade for future hospital consultants, so I'm thinking now maybe his approach is that of a very 'textbook' nature. Luckily our next appointment will be back with the oncology doctor who we've regularly been seeing. That's a great idea, thank you I will be in contact with him. Again, thank you so much for taking time out to respond. Anna.
St Michael Posted December 27, 2016 Posted December 27, 2016 Hi Amay. I am sorry to hear of your moms diagnosis. My mother was recently diagnosed with 3a adenoaquamous lung carcinoma. She had three chemo sessions then surgery (lobectomy vía VATS). She did respond to the chemo. She has not had radiation (yet). Did your mothers doctor explain why they couldn't do surgery on the tumor and cut out the affected lymph node in the mediastinum? Stay positive. Several clinical trials are underway which are combining immunotherapys now and are showing promising results. New advancements are being made daily as Tom said. Although your mom may have not have had a dramatic response to chemoradiation , she may to other treatments. Thank god there are additional options out there and more emerging. God bless.
ngc4au Posted January 19, 2017 Posted January 19, 2017 My father started chemo/radiation this week. He had his first chemo treatment Monday and his first radiation treatment today. In addition to the chemotherapy he received an IV infusion of iron. Can anyone tell me how they felt after their first treatments? He is 73 and has been sleeping a lot since the diagnosis (3 months since the journey started). He is receiving one chemo treatment per week and daily radiation. How long did it take to start feeling bad, good, different???
Recommended Posts