Danhole Posted August 15, 2012 Share Posted August 15, 2012 After my lobectomy, and being a stage 1B NSCLC survivor to being a stage IV with a large brain tumor requiring a carniotomy, I have been pretty freaked about the brain tumor thing, knowing there is still a piece of it in there. So my focus has been on whether or not chemo wouuld work on my brain. Well as of last Fri. (8/10) the onc. told me that we need to look at the fact there is cancer floating around in my bloodstream and we need to get that stopped before it spreads anywhere else. Now I have a proposed protocol but I am tired! All of this has happened so quickly, IMO and I feel confused, disoriented, sleepy, depressed, and still having pain. I would like to take a break to recover from one thing before I move onto something else. it seems like I have half of the side effects already. So, in your opinion or experience, is it okay to take some time off to recoup or should I be pushing onwards to get going on the chemo, having a port o cath put in being the first step? Thanks all. Hang onto hope. Dani Quote Link to comment Share on other sites More sharing options...
eric byrne Posted August 15, 2012 Share Posted August 15, 2012 Hi Dani, I am really sorry to hear of your brain tumour that has developed since your stage 1b dx,its so unfair,my young Baptist Church Minister,visited me often soon after my dx,to give me support,last year was also dxd with a brain tumour,he is only 31,married with a young family,I was so sad for him having to face this journey at such a young age.His name is Ross and he has just finally completed his chemotherapy treatments,following surgery some months ago,Ross's surgeon was unable to remove the tumour completely.Due to his fatigue, Ross has been unable to keep up with his normal pastoral duties,whilst he was going through his treatments,I just want to share with you that Ross has come through everything with flying colours and is making a steady return to work.He is so full of life and optimism,he is such an example to everyone who is going through difficult times with their health. My own gut feeling,is to proceed with your treatments as suggested by your oncologist,I would want to do everything to have all the remaining cancer cells in my body destroyed as like yesterday.I do wish you every success with your treatments whichever way you choose.God Bless. Quote Link to comment Share on other sites More sharing options...
RandyW Posted August 16, 2012 Share Posted August 16, 2012 you have to do what you have to do... If you feel time is of the essence, go for it and live life anyhow... If you want to take a break for a while you have that right also. It is your decision to make. My thought if I was in the scenario would be goo with Treatment and live life like I would want to at the same time! Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted August 16, 2012 Share Posted August 16, 2012 I trusted my oncologist and started chemo when he suggested. He let me make the decision to take a 90 day break after chemo only stabilized tumors and did not shrink them. Almost immediantly the cancer started to grow again. I had forgotten what normal felt like and thought I was still having side effects. I did not call my doctor for about 10 weeks and ended up in ER. I was fortunate to have the ALK mutation and Xalkori, the genetically targeted therapy for that mutation was now available outside of clinical trials! And it is working! I am also stage 4 and will always be in some sort of treatment. Once cancer is spreading all through your body, it is more difficult to completly eliminate it. It is treated as a chronic ilness. Listen to your oncologist and make your decision. My experience tells me that my oncologists has more experience with treating cancer than I do. I wish you the best and whatever you decide will be right for you. I can only share my story. If it was me, I would not want to allow the cancer any more time to spread and damage your body. You will be in my thoughts and prayers. I know how hard it is to make decisions when your body and mind are fatigued. Do your best and never give up hope. Susan Quote Link to comment Share on other sites More sharing options...
Danhole Posted August 16, 2012 Author Share Posted August 16, 2012 I feel like the WBR really took a toil on me. Since then I have had so much fatigue, stuffy ears, radiation burns around my ears and on scalp, no hair, a lump on the surgery incision that was biopsied, no results yet. My face started swelling on the surgery side, and the lump started leaking fluid. Also my pain from the lobectomy has moved and really hurts a lot, but had an X-ray to check the ribs - no results yet . . . And to top it off I am either having bad allergies or a summer cold with a cough. I was being weaned off the steroids but w/all the other stuff going on he put the dose back up. I should have called him (rad onc) already so he can redo all that but I just haven't. Quote Link to comment Share on other sites More sharing options...
curlysue50 Posted August 16, 2012 Share Posted August 16, 2012 Dani: Reading your profile and wondering when you were told you are stage IV. Did the biopsy of brain tumor show it was a metastases from the lung tumor? Did they do a PET or MRI before your lung surgery? When they found my lung cancer they did full scans to see if where I had spread. I guess they could see bone mets when they did x-ray, so knew at that point there were mets. It is a good sign that they don't see more tumors, but if they are telling you it is stage IV, that does mean cancer cells from your primary tumor have spread through your bloodstream to another area of your body (your brain tumor), if I am understanding your explanations correctly. I am sorry you have had to endure 2 surgeries. Do you feel comfortable talking to your oncologist? I would let him know how you are feeling. Like you need time to heal. I know when I was going through chemo I attributed how bad I was feeling to the chemo. Actually looking back, some of it was from the effects of the cancer on my body. Be sure to let your oncologist know all your symptoms of pain and fatigue. All that is concerning to you. It is hard to go through cancer. I felt as if the life was slipping out of me. But, I took my onc's advise and am now on a treatment that is working for now. Do the best you can each day. Don't give up, even when it seems impossible and hard. You are stronger than you know. Thinking of you. Worried about you. You are not alone. Susan Quote Link to comment Share on other sites More sharing options...
Danhole Posted August 16, 2012 Author Share Posted August 16, 2012 Susan, I had the first PET scan back in March, but no brain scan. They felt it was curable, I could have the surgery (4/30) and it would all be over in a few months. No big deal . . . Then came the brain tumor, the stage IV DX (6/12) & surgery (6/20) which was a metastases from the LC. The rad. Onc did another PET scan 7/9 to see if there was anything else in there before he started the rad on my brain, and that was clear, thank God! I am compiling a bunch of questions for the reg. onc before I go any further with this. I appreciate all the input. I am still having enough issues w/mental confusion and fatigue so it helps to see the questions you are asking me. At this point he has said we should get going, but not a whole lot else. But I think he is approachable. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 18, 2012 Share Posted August 18, 2012 Hi Dani, I'm not a cancer survivor and I can't begin to know how that feels. I just want you to know that my prayers are with you and I'm so sorry you are having such a hard time. Hugs, Sue Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.