lisaRN Posted September 13, 2004 Share Posted September 13, 2004 Hello Everyone, Last weekend I was out with my son and my husband. We had been sofa shopping on Saturday but went home to think it through. We breifly looked at some local ads for tag sales and second hand sofas bu finally ruled that option out b/c with Ahmed sick it is difficult to move any thing that big. So by Sat night we decided to go back to the store on Sunday and order the one we wanted. We Sunday comes and we all get ready. It was about 3:00pm and we were still waiting for my son to come out of the shower. My husband kept asking what time does the store close. I said maybe 5 or 6, but wasnt real sure.... Anyway we finally get onto the highway around 3:30pm and head up to the store. we got about 2 exits and my husband started asking, "Where are we going?" I reminded him, "to the store to buy the sofa" He got real angry and kept saying is this what we planned??? I was puzzled b/c I wasnt sure where he was coming from? I asked him if he wanted to stop anywhere else first. He said "thats it, this is not what we planned, I'm getting out of here" and he opened his passenger door.... He freaked me and my son out...my son grabbed him from behind ( I was driving 65mph)..... I grabbed hold of him with my right hand.... we got him to shut door.... I was HYSTERICAL now, crying etc... I got off the highway and pulled over.... 'why are we getting off the highway" he was saying... after i calmed down a bit i told him that i did not understand why he did that.... he swore he didnt do it.... i told him we were going to the hospital instead.... He got so upset and was saying stuff like "oh so you thingk i am crazy". We sat for a while and calmed down.... he told me he thought i was driving to the beach....and he thought he opened the door when i got off the highway.... i didn't know what to think.... is this brain mets???? is it all the meds he is on b/c the meds HAVE effected his personality in a big way....he is very easily agitated now and ALL of this is out of the norm for him.... he said please we dont need the hospital now.... i am just tireed from the meds. my son and i decided not to take him to the ER on a sunday and put him through all of that when they prob would not do anything anyway until monday.... monday we saw an on call doc re: swelling in his hands and face and legs...(our onc is on vacation until next week) .... the on call doc sent him for an ultrasound to r/o blood clot.... (results of that were no blood clots ) when the nurse started down the hall towards Ultra Sound with Ahmed in the wheelchair, I snuck back to the doc quickly and explained what had happened, I told him i didnt mention it in front of my husband b/c i did not want to embarrass him... he said he would order a brain MRI Well he was okay with news of the test and had it on thursday.... Friday my cell phone was dead....forgot to plug it in.... and when i checked for messages last night i had 12.... 6 or 7 were from all different docs...first from the on call doc saying he wanted to make sure that the radiation doc called us... then from the radiation doc 3 or 4 times saying they needed to see us that day.... then a couple of calls from doc in New Haven that i had never heard of before.... i think from the message they said they were from the GAMMA KNIFE CENTER???? I'm not sure, does that make any sense... anyway, not one of the calls indicated why the urgency nor did they mention at all the brain MRI..... my son told me not to jump to conclusions but this MRI is the only thing that could have triggered all those calls, we had nothing else scheduled until the 20th which was just a follow up with the onc re: Iressa . I am so scared. Scared of what the results are and scare of the consequenses and the TX.... all that i have read is that tx's involving the brain are tough on the patient.... i feel like perhaps i opened a can of worms.... when we found out he had mets to the liver , bone and adrenal gland, the onc said he wouldnt do anything right now in the way of radiation. He said it is much more important to get the chemo in.... chemo was systemic and might not be tolerated in combination with RT which was Ahmed's experience in the beginnin....RT was a nightmare for him.... for 7 weeks he could only drink shakes b/c everything else burned in the esophagus going down.... my concerns are plenty... i wish his onc was here...i dont like going to all these appts we are being referred to w/o his advice.... second did i jump the gun with the open door on the highway thing...what if it was the meds? he hasnt acted strange at all since that happened and except for the mood swings.... is other wise himself.... i dont want him to go through all this hell b/c of one episode which if my son hadnt been there too, my husband might have been able to convince me wasnt a big deal.... oh what to do... Lisa Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 13, 2004 Share Posted September 13, 2004 Lisa, Of course Don Woods always says not to borrow trouble, so I am only going to say that since Gamma Knife is a way to treat brain mets, it could be--BUT on the positive side Gamma Knife is ususally only used if there is one or maybe two brain mets and they are small. I know you will find out in the morining and until then I will be sending loads of positive thoughts your way. Maybe the Gamma Knife is for one of the other mets. But either way, GAMMA KNIFE is a good thing! love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
MJ Posted September 13, 2004 Share Posted September 13, 2004 wow lisa, i'm so sorry about everything going on. i don't think that you overreacted at all in the car. you must have been shocked, and getting your family to safety under the circumstances must have been difficult. i'm sorry that i don't have any direct advice to pass on to you except to say that your son is right about jumping to conclusions (i know that's near impossible with all the experiences we have had with this disease). if the gamma knife office called, it may be a "better" sign since people have way less side effects with that procedure than with wbr (if indeed that is what is needed). my mom is currently having wbr while on iressa, so if your husband needs wbr, ask his doc if he can stay on the iressa while having treatment (it has made my mom extremely tired, but i think it's more from the wbr than the iressa). and i can empathize with you 'cause when my mom was trying to getting authorization to have wbr, her onco and primary docs were out of town, and they are the only ones that can authorize that treatment with the insurance. my thoughts are with you and your family. please pm me if you have any direct questions. God bless, mj Quote Link to comment Share on other sites More sharing options...
ginnyde Posted September 13, 2004 Share Posted September 13, 2004 Lisa, First, I think you were 150% right in mentioning the car episode to the doctor. If it is nothing you have peace of mind, if it is something, the faster you do treatment, the better the chances. My husband had whole brain radiation and while it did have side effects, I definitely think it was worth it. Hope you have good news today. Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 13, 2004 Share Posted September 13, 2004 Lisa, Opening a car door at 65 mph is NOT a "personality change". Confusion is something going on in the brain, agitation can be caused by the same... I've had scans of my brain due to some "issues" I've been having. No mets, but my brain (after a neuropschologist put me through a battery of tests) isn't functioning at 100%. It may NOT be brain mets, it also may very well be. I would think that BEFORE hitting full-scale anxiety attack, you would contact these doctors and find out what is going on. Don't put the cart before the horse, so to speak. Doctors don't leave detailed messages on phone mail - HIPPA has kinda made life harder on us with more than one doctor... My messages say things like "Have Rebecca call her doctor." Hmmm...WHICH one? GP? Oncologist? Radiation Oncologist? Neuropsychologist? ARGH!! Return their calls, find out what's up...and don't panic. Whatever it is, it is. Just form a game plan (sounds like there's a lot of players on your side) and get on with the getting on.. Here's hoping it's just "chemo brain", "cancer brain", or stress that has your spouse all whacked out! Becky Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 13, 2004 Share Posted September 13, 2004 Lisa, I am hoping you are at the doctor today with Ahmed. You were absolutely right to tell the doctor about the episode in the car. ANY change in behavior or new symptom should be reported to the doctor. It is always better to be cautious and have it be a reaction to the meds or something minor than to do nothing and have it be serious. Either way, it sounds like his doctors are wanting to start a treatment right away. My prayers are with you and Ahmed and your wonderful son. Please keep coming here and we will give you all the support we can muster If you need to rant or cry or just vent, feel free to pm me. Good Luck. TAnn Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 13, 2004 Author Share Posted September 13, 2004 thank you all so much.... everyone is absolutely right...and although I tried not to borrow trouble, the weekend was very difficult especially since i did not tell my husband about the messages or my suspicions... i spoke with my mom and my son and both agreed that telling him over the weekend would only make it more difficult... he probably would have been asking millions of questions that I need the answers to MYSELF. Well here I sit about 45 phone calls later....still no specifics other than the radiation onc wants to see us at 2pm we are off now.... i will try to come online later today.... thank God for this site....it helps so much to be able to vent here... and EVERYONE is so supportive of each other... my only hope is that i can give back as much as i get.... Lisa Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 13, 2004 Author Share Posted September 13, 2004 thank you all so much.... everyone is absolutely right...and although I tried not to borrow trouble, the weekend was very difficult especially since i did not tell my husband about the messages or my suspicions... i spoke with my mom and my son and both agreed that telling him over the weekend would only make it more difficult... he probably would have been asking millions of questions that I need the answers to MYSELF. Well here I sit about 45 phone calls later....still no specifics other than the radiation onc wants to see us at 2pm we are off now.... i will try to come online later today.... thank God for this site....it helps so much to be able to vent here... and EVERYONE is so supportive of each other... my only hope is that i can give back as much as i get.... Lisa Quote Link to comment Share on other sites More sharing options...
MJ Posted September 13, 2004 Share Posted September 13, 2004 lisa, i see that you are meeting with the radiologist today. my prayers are with you and husband. please keep us updated and take care. God bless, mj Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 13, 2004 Author Share Posted September 13, 2004 Not good news.... met w/ the radiation onc today and he told us they did find a 2cm tumor in the left parietal lobe of the brain... i pulled him aside and expressed my concerns w/o my husband... he said we dont have a choice but to treat this regardless of whether the changes we see are from the tumor or the meds.... he said that if this tumor is not treated it could cause right sided paralysis.... oh and the doc told me something i never knew.... he said most chemo doesnt cross the blood brain barrier.... so chemo and Iressa cannot prevent this! my husband is devastated and is much more depressed.... my son and i are trying to stay positive .... after all it is only one tumor and the doc said it is pretty small and in an easy area to tx.... they made an appt for us at the Gamma Knife Center tommorrow and said he absolutely needs the Gamma Knife surgery... he mentioned a randomized trial for Gamma Knife w/ & w/o whole brain radiation but mentioned that WBR can cause personality changes, short and long term memory loss, higher learning loss and recognition problems... we are hoping they get this quick enough that he wont need WBR but the doc said that one reason for going into the trial and taking the WBR would be to prevent any further lesions.... does anyone have any experience with this? are the side effects occuring in all patients? does it really prevent spread? I guess tommorrow we will learn about precisely what is next and why. I just keep thinking that if God wanted him already He could have taken him.... I thank God for every second but I pray we don't lose him.... Thanks again for all the support.... Lisa Quote Link to comment Share on other sites More sharing options...
MJ Posted September 13, 2004 Share Posted September 13, 2004 hi lisa, i'm so sorry to hear about your husband, but one brain met that small makes him an excellent candidate for the gamma knife procedure. from what i have read, the procedure doesn't really cause any side effects, but the procedure does take up half of the day. my mom's docs also said that they like to keep the patient at the hospital overnight, just to make sure that everything is okay. as for the wbr questions...there is really no wrong or right answer as far as i have found. some docs say that patients should go through with it, but from my research, i have seen patients who don't have the procedure who are fine (some are on this website) while others who do go through wbr still have more lesions appear after some time. i know that it's realy frustrating. my mom just finished wbr, and i'm going to be totally frank with you: i have never seen my mom so exhausted, thin and weak. she lost a significant amount of weight and she is tired all the time. however, others who have gone through wbr haven't had as many problems. i think generalized fatigue is a common factor though. i think you should totally talk to several doctors and find out their opinions. when my mom was diagnosed with brain mets, i called different hospitals and talked to specialists to get their opinions. please feel free to pm if you have any other questions. i hope this helps. my prayers and well wishes are with you. God bless, mj Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 14, 2004 Share Posted September 14, 2004 I am sorry to hear about the brain met, but glad it was found relatively early. Did your husband have an MRI or some other imaging test of the brain at DX? If so that might help you decided whether or not to do WBR, since that is a fairly short time for a tumor that large to appear ( I think). I also notice that your bio reads squamous cell--is that correct or is it adeno? It is rare for non-smokers to get squamous, so I was wondering.-also because adeno frequently mets to the brain whereas squamous does, but not so often and with fewer mets, from what I have read here on the board and elsewhere. That, too might help you decide. There is a member, Karen from CA who had gamma knife and then some other radiation afterwards--not WBR, so you might want to check with her about that. I know there are so many decisions to make and so much stress to make them under. You did the right thing by telling the Dr even if the symptoms he had in the car were not caused by the met. love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 14, 2004 Author Share Posted September 14, 2004 MJ, thanks for the reply, i am sorry to hear that your mom went through this too.... did she have any of the other symptoms i mentioned...such as the changes in memory etc...? thanks for all the other info .... it definately helps... Elaine, yes it is definately squamous.... that is what is so puzzling .... at diagnosis they said this type was mostly smokers.... we saw alot of scrunched up eyebrows.... then they told us that that NSCLC was slow growing... the medical onc said she had many many patients living 15-18 yrs.... i remember thinking angrily 15-18 yrs?... now I'm praying for 15-18 months.... what happened?? thnaks for all your support elaine, all my best wishes to you.... Lisa Quote Link to comment Share on other sites More sharing options...
MJ Posted September 14, 2004 Share Posted September 14, 2004 hi again, my mom hasn't had any other symptoms except that she started losing her hair after the 12th treatment (out of 15). however, i have heard that the symptoms can show up months/years after the procedure. but, once again, there is no real way to determine that. my mom's radiologist mentioned that he had a patient a few years back who had wbr and is still practicing law. just one more hurdle to overcome (and there are just so many! )! God bless, mj Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 14, 2004 Share Posted September 14, 2004 Hi, I have had three brain mets treated by the Gamma Knife procedure. When I was first diagnosed, I had one treated. Two more were identified approx. 18 months after the initial diagnosis and were also treated with the Gamma Knife. I would highly recommend the Gamma Knife. The procedure takes about a half day. I was required to stay in the hospital overnight for monitoring (what a joke). I had some mild headaches during the first week after the procedure but nothing serioius. After both times, I drove with my son (he's to visit relatives 2 1/2 hours away. Unfortunately, more mets have been identified and I now need to get wbr. I wish you and your husband the best. Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 14, 2004 Share Posted September 14, 2004 Lisa, I am so sorry to hear the news about the brain mets. You both have been through way more than your share. I really don't know much about gamma knife or wbr, but there are many here who have been through one or the other, (or both) that can lend you a world of information. Sending positive thoughts your way and success with the treatment. TAnn Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 14, 2004 Share Posted September 14, 2004 Lisa, This is going to be one of those decisions that only you and your husband can make. The gamma knife is probably the best way to go for now to get rid of the one tumor. As far as wbr is concerned, you are going to get a lot off different views. Some people do fine with it, and some don't. My husband did ok. He did get tired, got a very dry scalp and a little confused and slow to respond. The confusion really scared me, but it went away in a few weeks. It's been a year now since the wbr and he doesn't show any signs of trouble with confusion, etc. He started with wbr because there were too many mets to do gamma knife initially. Later, in Nov. 2003 he had Novalis (similar to gamma knife) to the remaining 6 mets and currently still has 4 mets, but they are not giving him any problems at this time. I forget the exact sizes, but I think the largest is 15 or 17 mm now, and the other three are very small. I'm not quite sure what you meant by this questions: does it really prevent spread? If you mean does the gamma knife prevent spread, I think the answer would be no. The gamma knife is a type of stereotactic radiosurgery (radiation) that focuses on that one met and zaps the life out of it (hopefully). It's believed the mets are spread to the brain via the bloodstream, and therefore, that's why wbr or pci is offered to hopefully kill any tiny mets that can't be seen. If you meant something else preventing spread, I'm not sure what it was that you were referring to. Karen, the lady that Elaine mentioned (Karen335), will probably be on here eventually and respond to you. She had gamma knife to one met, I believe, with a very good response - I think I recall that she had 100% reduction in the tumor and has not followed up with wbr, but I could be wrong, so it's best to hear it from her. I'll send her a PM and ask her to read your post. Best of luck to you, and let us know how it goes. God bless, Peggy Quote Link to comment Share on other sites More sharing options...
karen335 Posted September 14, 2004 Share Posted September 14, 2004 Hi Lisa, I just got Peggy's PM. I am not at home, I'm on the road in Florida. Trying to get away from Ivan. It's been exciting. I am sorry to read the news about your husband. I had one brain tumor that was almost 1cm. It was surgically removed and then I had Stereotactic Radiation (one treatment only.) I had the option of WBR or Stereotactic. I researched the two and decided the best for me was Stereotactic. I have not had any side effects to speak of, just fatigue for about two months. I had surgery April 6th and radiation June 4th, 2004. It is and individual choice. The met was in the Cerribellum (Sp?) area, back of head on the left side. My symptoms were dizzy, balance, nausea and vomiting. I am doing fine now. Have you asked about surgery to remove the met or mets? I was also on steroids, Decadron (low dose 2mg per day) I hope this info helps. Each person is different. PM me if I can answer any questions for you. Praying that your husband gets better. Stay strong and keep coming here and we'll help and support you.. God Bless and prayers, Karen Quote Link to comment Share on other sites More sharing options...
lisaRN Posted September 15, 2004 Author Share Posted September 15, 2004 thank you so much, peggy and karen.... you guys are so awesome to help me even when on vacation.... well we met with the Yale Gamma Knife Center today b/c our radiation onc locally said they are the only center in Connecticut.... we went into the consultation prepared thanks to everyone here and extensive research on the net last night for both wbr and gamma knife... together Ahmed and I sort of decided that since there is only one tumor right now.... why risk the side effects of wbr at this time... we are aware that it may become neccessary later... what we are hearing from the doctors is that say for instance he does do the wbr right now for 2 weeks worth of treatment, what if on day 15 new cells cross into the brain we have to realize that the wbr we did on days 1-14 cannot prevent the new growth... the problem was when we got to the appt.... the docs were like high pressured sales people.... they want him to go into the study.... we kept asking if we could do gamma knife alone and they said that if we did not do the trial, then we would have to do wbr at our local hospital and then come later for a "booster shot" of the gamma knife..... they are really pushing for him to enter the study.... now i am a strong believer in clinical trials.... and so is Ahmed but i also believe that you have to select and participate in them according to your comfort level with the treatments being offered.... in this trial, 100% of patients will receive gamma knife and 50% will be randomly selected to receive wbr additionally.... it just doesnt feel real comfortable....since they are so reluctant to treat with gamma knife alone , i feel that we need to start looking around for another gamma knife center....maybe in new york.... when we were in florida 2 weeks ago at mayo clinic, the radiation onc there mentioned this type of stereotactic procedure, she had said to call her if he ever needed it, i vaguely remember everything she talked about b/c we werent aware of this proble yet so alot of that stuff went right past me... anyway i plan to call her tommorrow morning.... our medical onc is still on vacation and totally unaware of any of this .... we have an appt with him on monday when he gets back.... i will be glad to get his opinion.... we really like him, he is straight forward and tells you like it is.... and he doesnt rush to do anything unless it is necessary... thank God we have had a pretty good experience with since we changed MD's... we are also scheduled to go to Mary Crowley Medical Research Center/ Baylor University next wednesday 9/22/04 to meet with Dr. Nemunaitis for a consultation to see if Ahmed meets the criteria for the lung cancer vaccine (GVAX) trial...this vaccine trial was reccommended to us by Mayo Clinic.... i am praying that nothing prevents us from going.... i know we are grasping at straws.... but at this point I feel so desperate.... if we here of anything that offers true, legitimate hope (even 10% success rates) you will see us there... thanks again everyone....absolutely everything you guys have to offer helps.... my prayers and thoughts are with all of you Lisa Quote Link to comment Share on other sites More sharing options...
karen335 Posted September 15, 2004 Share Posted September 15, 2004 Hi Lisa, Have you inquired about surgery to remove the tumor and thendo stereotactic radiation? My radiation onc was pressuring me to do WBR and I told them flat out NO. He then referred me to City of Hope in Duarte, CA and they did the stereotactic after running tests to make sure I had no other mets. Look at what FayA posted about brain met trials and treatments... Keep us posted, saying prayers that you find the right treatment. God Bless, Karen Quote Link to comment Share on other sites More sharing options...
Lisa O Posted September 16, 2004 Share Posted September 16, 2004 Lisa You are all in my prayers. Also, please have them double check. ALONG WITH the appropriate gamma knife and/or radiation, I have read some studies that indicate that Iressa does very possibly cross the blood brain barrier. I am not sure if it is a certainty but it can't hurt to check it out. My daughter had gamma knife last August and tolerated it extermely welll. I wish your husband all the best. Please keep us posted. Lisa Quote Link to comment Share on other sites More sharing options...
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