Paige Posted August 20, 2018 Share Posted August 20, 2018 Hi all! (Sorry for the long post but wanted to present circumstances and correct information). I really need some help and info. My mom was diagnosed with Stage 4 Squamous Cell lung cancer in January. 4.5 yrs ago she had a kidney transplant that has been doing great, then this. I have been fighting nonstop doctors, insurance, facilities etc. to get her the correct and good care she needs and wants. I am sure to follow all her treatments, medications, lab results, tests etc. (A lot has been overlooked or missed). From the start it took me over a month to get approved to go to MD Anderson from insurance and MD themselves, even with support from docs here, which ended up being a nightmare, but that’s a whole other story in itself. We finally found a good Oncologist (the one in the hospital when the cancer was found kept asking if she was sure she wanted treatment) after feeling there was no hope. The cancer was found in her right lung and in the pleural cavity, thus Stage IV. She has had 6 rounds of chemo of Carboplatin and Taxotere. In May - 2nd PET scan done at MD Anderson, we were told the results were 90% better!! Couple weeks ago had 3rd PET Scan and told Scan was very similar to previous at MD and the cancer in the pleural cavity basically looked non existent as couldn’t really see. However, mass within thorax, a right middle lobe mass has shrunk but still there and close to airways. Size is now 26mm x 18mm although maximal SUV did increase from 4.8 to 7.9. (Have researched SUV values but don’t really understand them, if anyone can help explain). Also read SUV values are not a very precise, accurate, or definitive measurement. The doctor was not concerned with this change and not sure correct. The original plan was to continue with Taxotere as maintenance. At appt. the Dr said at “board presentation” of case currently, they actually wanted her to stop chemo altogether, f/u w/ PET scan in 3 months and “see how looks” and whether cancer has progressed or not. (Not an idea my mother or I liked). The Dr explained to us about SABR Targeted Therapy, which he really wanted to do on the mass in the r due to being so close to airways, and stating it would not affect surrounding organs. He was going to get with MD Anderson doc, discuss, see if it might be presented to his board, and possibly move forward. We asked him to please do that, but irregardless we were liking what we heard so far, wanted to do further research, and MD Anderson was not the final decision maker. I immediately began researching and found SABR mostly used in early stages but has been successful in later stages. Long story short, doc never got with MD Anderson, not sure what happened, not being told, but was told “board” is of consensus to just do Taxotere for now, do PET Scan in 3 months and keep other in background for later possibly if needed. I wanted answers and told why. I was told because so far handling chemo ok (not true as side effects awful) and they’re worried about side effects of SABR. I asked what these side effects were as based on the research I did side effects were minimal and a lot less than she has now! Never got an answer. All this transpired over the phone. Therefore, at our next appt I want to be prepared! I’m furthering my research and ANY info that can be supplied would SOOO greatly be appreciated!!!!! I would really like to hear from people that have had the treatment or their caregivers. Info on side effects and outcomes too would be great!!!! I welcome all positive and negative info. We would like as much info as possible! I’m strong willed and willing to do whatever fighting that needs to be done for my mom, as long as she wants me too! She is very interested in this from what we’ve heard thus far. She is fighting this battle of cancer and is NOT ready to give up so I do all the hard fighting she is unable to do!! My mom is 75 and has been doing great since the kidney transplant before all this. I’m worried that due to her age and of course finances ( she has Medicare) she is being brushed aside!!! Thanks in advance for anyone reading this and willing to give input! I also send well wishes to all patients fighting this HORRIBLE disease and I send good energy to all family and caregivers who are FIGHTING the system and fighting others EVERY single day for their loved ones!!!! Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.