CancerCompass message board discussion started by Luckystar on 9/1/2005 http://www.cancercompass.com/message-board/message/all,2854,0.htm Sun, 12 Oct 2008 00:00:00 GMT Sun, 12 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi all, My dad was diagnosed with NSCLC lung cancer in June 05, and has had a total of 3 treatments using a combination of chemotherapy along with a new drug Avastin. It has done wonders for my dad. He has liver mets, bones mets, and just recently we found out through the MRI scan that it has spread to the brain. Using the new drug,his tumor in his left lung has broken down and necrosed in the center, and his lab results had seemed to drop down dramatically. The only concerned now is the brain mets....does anyone know if this new medicine avastin help w the brain mets.... The radiation doc says that he needs whole brain radiation immediately, but the problem is I don't know what side affects may occur.... Memory loss? Brain damage????? worried and confused, luckystar Luckystar Thu, 01 Sep 2005 00:00:00 GMT Hi Kathy N. Hello my name is john and I also have nsclc lung cancer w/brain mets. I had surgery to remove 1 large tumor and also had my whole head radiated. As for side affects I guess maybe everyone might be different. I had 14 radiation treatments as for side affects I lost my hair, my head was burnt like a bad sunburn and had a little hearing problem. That's about all I had. So hope I may have helped you out. If you have anymore questions please ask I wish you luck and hope to here from you John M. John91 Sat, 03 Sep 2005 00:00:00 GMT Hi, I'm thrilled with your success with the tumor using Avastin. My husband has had Carbo/Taxol/Avastin for 4 rounds and we go today for our CT Scan results. As for the brain mets, the treatment seems to be tied to the number of mets at first. Most of the people I talk to agree that they have had WBRT recommended to them if there are more than 4-6 brain mets. The side effects I read about can be serious, but the argument is that one can surely die from the brain mets growth sooner than the cancer tumor and the Docs want to give even the smallest ones that don't show up yet a good dose of radiation to deter them and the bigger ones from growing. However, after the initial treatment seek out advice how to proceed if the mets grow or return. There are other options than GammaKnife out there; look up Novalis Variable Beam. It has more accuracy capability for some shapes of mets. I would also like to talk to someone who is one to two years out with WBRT. Anyone? aly Sweet Pea Wed, 14 Sep 2005 00:00:00 GMT My 57 yo mom was diagnosed with NSCL mets to brain with 6 marble size tumors 'showered' over her brain. They did 10 rounds of whole head rads and between the Decadron and the rads, she was kind of a mess. Her head was very burned and she lost all her hair quite painfully. I wish I could describe what changes have happened but they are so vast, it is impossible to tell what caused the damage and if it is permanent. Her personality is so different, she is very emotional and short tempered and really is just not the same person. I pray that I get a little bit of her back as she heals. A recent MRI has shown significant shrinkage, but tumors are still present. Taxol/Carbo Chemo also has her so weak she has taken a few weeks off but uinfortunatly she is just not gettting her energy back. Mskimberly Fri, 16 Sep 2005 00:00:00 GMT Kim, with stg 4 disease do you find it is worth feeling so lousy? my mom has stg 4 with mets to brain but she doesnt have enough energy to leave the house more than her chemo day. would it be better to just live out life as is, does your family push you, are you waiting for them to say enough or is it what you want. Daughter#2 Sun, 18 Sep 2005 00:00:00 GMT my mom has stg 4 lung ca with brain mets. she underwent 3 weeks (15 treatments) of full brain radiation which removed 3 lesions.She then had a one time stereotactic radiotherapy to remove the last lesion. she has not had any problems with severe memory loss,confusion or seizures etc. she does seem a little forgetful at times ie.. "where did i put the keys" etc.. but i'm not sure if that isnt from the chemo and fatigue she has now. she is very exhausted which is the most common side effect of the radiation per her md. hope this helps Daughter#2 Sun, 18 Sep 2005 00:00:00 GMT Its actually my mom and not me, but my honest opinion is this... I think that my mom is miserable. If this is all there is (sleeping half the time and too weak to make it to the bathroom and too confused for more than a simple conversation) she would just prefer to let go BUT... nobody will say this is permanent. Nobody knows. I think if she knew this was what would happen then maybe all those people who said quality over quantity of life is what matters were right. I think maybe I am being selfish to push her to stay for me and my kids. But is my step dad selfish to keep her for himself? As I sit here feeling like I might die myself from the heart ache, maybe it would be better.... but I am 35 and too young to not have a mom. I am so scared my kids won't remember her. I am just so scared of everyhting. Mskimberly Tue, 20 Sep 2005 00:00:00 GMT Kathy, My mom was diagnosed with Stage IV NSCLC one year ago. Her most life-threatening issue was brain mets. A couple of things regarding your dad's brain mets: - Whole brain radiation: We declined this treatment based on our homework which showed signficant and permanant side effects. Maybe worse than the cancer itself. This is a very serious decision and alternatives should be investigated. - My understanding is that Avastin can be dangerous when used in the presence of brain mets. Avastin can cause hemorraging which in the brain can be probablematic to say the least. - My mom abandoned chemo (and was not a candidate for Avastin) and has been on Tarceva. We are getting miraculous results. We know the drug will stop working at some point. But she has already outlived the statistics with a relatively good QOL. Hope this helps and best wishes battling this terrible disease. Paul. Moms Son Tue, 11 Oct 2005 00:00:00 GMT Hi! I have the same cancer as your Dad (dx in March). I have spine and now brain mets. I did whole brain radiation for 4 weeks and just finished it last Friday. It's hard to say what side effects I had from it b/c of all the meds I'm taking. The Dr. said I'll continue to get benefits from the treatment for a couple of more weeks; so we haven't done a scan yet. I had started on Decadron and Dilantin b/c of a seizure I had before we started the radiation (how we found the brain mets). Dilantin is for the swelling and Decadron is a steroid. I felt great while on the Deacadron; good energy, felt like "my old self". That prescription was finished a couple of weeks ago. Then I crashed from coming off the Decadron - no energy, no appetite. A Dr. I'd not seen before Friday told me that 1 mg of Decadron is equal to 30 mg of Prednisone! So know about the meds; I think they should have weaned me off of it gradually. I know that I don't think as clearly or quickly; the cause I don't know; seizure, tumors, radiation? I think the radiation does cause fatigue. That's the main thing I've noticed. Best wishes to you and your Dad. Susan Susan in Georgia Tue, 25 Oct 2005 00:00:00 GMT Oh yeah! I forgot about the hair loss!! I lost all my hair again and eye brows. And my scalp and forhead and ears are very dry with flaky skin. My forehead and ears look sunburned. Susan Susan in Georgia Tue, 25 Oct 2005 00:00:00 GMT Hi There... I recently had surgery (in sept) to remove my top right lobe...since then doctors have been humming and hawing over what treatment is best for me...I have gotten 2nd opinions...I have cancer in both lungs..nodules are very very small..cancer has also spread to outside the windpipe on right side (3 cm area)...what I'm concerned about is...my right ear has been aching...I had a brain CT scan in Sept when I left the hospital...also a bone scan in August...chest/abdomen CT scans in Oct and all showed clear...my ear doesn't show infection...(naturopath said) but I wonder if this could mean that I have something in my spine..leading to brain? sounds stupid I know..but I really don't know what to look for...I'm afraid that doctors will just tell me its nothing...have you guys ever heard of earaches with brain mets? please advise...I'm seeing doctor on Monday...to find out about treatment...they all had a big meeting Friday to discuss my case...I can't believe I am still waiting around to be treated...other than the earache I am well. I have energy and feel good. but am really scared. Andrea1 Sat, 05 Nov 2005 00:00:00 GMT My husband had WBRT last fall. He was diagnosed with NSCLC January, 2004. Treated with carbo/taxol with shrinking of the tumors. In July he had a seizure and we found brain metastasis. In the fall of last year, @August or September he had the whole brain radiation. He subsequently had four lesions treated with stereotactic radiation at three different times. He has had some balance problems but we are not convinced it is due to the radiation treatment. He has been weak from the chemo so his leg muscles are out of condition. He goes 3 times a week for physical therapy to build up his leg muscles. He has some short term memory problems but we have noticed a marked improvement over the last few weeks. Getting back to his old self. Hard sometimes to tell what is caused by the radiation/chemo/general weakness. Diana Diana21 Wed, 09 Nov 2005 00:00:00 GMT My father was diagnosed in may 05 with NSCLC. The cancer was found by accident. He started chemotherapy in June 05 with avastin. My father had no symptoms of anything. After 6 chemo treatments he started getting confused. Oncologist said it was a side effect of the chemo and suggested we take a break. After a continuos downfall in balance, speech, memory etc. we did a ct scan that came back negetive. After another week I asked for an MRI. It came back and we were told that there were little "outburst" maybe tia's on the image. The diagnosis we ended up with was that it didn't look like typical strokes, and it didn't look like typical brain mets, but if we did WBRT,if it was brain mets we should see improvement. If we didn't, then maybe something else is going on. So after 14 WBRT treatments, there was absoulutely no improvement. Doctors said that since my father did not have any arterial blockages, then it MUST be mets! As of today, my father is on hospice care. In a four week period in august 05, my father went from driving a car to basically looking like a complete stroke victim. Is it ironic that he had no symptoms of anything until chemo with avastin? Doctors said they have never seen a patient decline that fast. His awareness and speech comes and goes. Still looking for answers. Ande1rk Thu, 01 Dec 2005 00:00:00 GMT hi there my mom was just diagnosed with brain cancer with mets i really dont no how i am feeling still in shock can u rely to me and share me your story all the best deanna Tuxdevon Mon, 12 Dec 2005 00:00:00 GMT My father was also diagnosed with Stage IV NSCLC. He was diagnosed due to a hospitalization in which we thought he had a stroke. In Dec 05, they found a large mass on his right upper lobe and 2 metastasis in the brain. He started 10 treatments of Radiation Therapy with his last treatment ending, on December 28th. One week later, he was hospitalized. He was very weak and was dehydrated and he just wanted to sleep. This was Jan 5, 2006. It is now Jan 16th. He now is now confined to the bed and has dementia. Every now and then he will recognize the family. It's very painful seeing him in this condition. It happened almost 1 week to the day of his last Radiation treatment. The doctors are not doing much. He's being monitored and they are pushing us to contact Hospice. In speaking with the doctors, the average life expectancy is 2-4 average with someone with my dad's symptoms. I am very surprised at his rapid decline. Has anyone heard of a decline like this, and have they gotten a little better? Chris_ca_bay Mon, 16 Jan 2006 00:00:00 GMT Hello Kathy, Sorry to hear about your father. My father also was diagnosed (by accident) in June 2005 with nsclc with liver mets. He had no symptoms of anything. Cancer was found on a check up. Started chemo in June 05, with avastin. After six treatments it showed tremendous results on the lung and liver...however he started to lose his memory and had trouble with his motor skill. M.R.I showed small "specs" in his brain and we were told that it was either tia's or mets. Although it didn't look like typical mets, they assumed it was. From Aug 1 to Aug 26 he went from driving a car to not being able to walk, talk, move etc. We then went through 14 wbrt with no results whatsoever. My father died on Jan 2, 2006 after being home on hospice since August 26. Read the warning on the avastin and the high risk of stroke and hemmorhage. My mother is convinced that the high doses of avastin caused him to have strokes. I don't know???? I hope it works better for your father. Ande1rk Mon, 16 Jan 2006 00:00:00 GMT Christopher, I am experiencing a similar situation. In August my father told me that he thought he had lung cancer, but he did not want treatment for it. I took my father to the hospital on 12/19/05, because he was having symptoms of a stroke. He was right he did have lung cancer and it spread to the brain. I didn't know this could happen. While in the ER he had two seizures, and has not been the same since. He is on medication for the seizures and the swelling, and under hospice care in an assisted living facility. He is still mobile and able to get around, but he has to have someone keeping an eye on him. I can see him declining and getting worse everyday. I was given the prognoses of 4 months. If the doctors are pushing for hospice care you should at least contact your local hospice and see what they recommend. It is a great organization and they will give you advice even if you do decide it is not the right option for him. Good luck. Jessicab7439 Wed, 18 Jan 2006 00:00:00 GMT