Guest Renee Posted January 11, 2003 Share Posted January 11, 2003 Hello all... I am so confused about this board. Just when I got used to the other it changes... Anyway. the problem now is that Mom has started falling and cant walk alone. She is so dizzy and tired that I'm worried. the doc's say that it is not normal, but that is all they say about it. I don't know what to do. I am trying to get her to another ongologist,but I need a referall that I can't get. Mom says she is dying. She hasn't been doing any chemo and we stopped her radiation. she has done 7 weeks and they say she needs 6 more weeks, Not possible!!!! Anyone know what I can do? Thanks Renee Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 11, 2003 Share Posted January 11, 2003 Renee, Get your mom in for an MRI ASAP. My dad showed symptoms similar to this and we got him right in for an MRI which confirmed 3 brain tumors. Lung cancer commonly spreads to the brain. There is much that can be done for brain mets. Also, when we called dads oncologist (christmas day, we called the emergency number) he called in a perscription for steriods to reduce brain swelling-which causes the dizzyness and whatever symptoms that happen. It is the swelling that causes symptoms and depending on where the brain mets are the symptoms can be different. Speech patterns, etc. can be affected. My dad was so sure the cancer hadnt spread to the brain because he never had headaches, but headaches are NOT usually a symptom. I don't mean to scare you, but the sooner it is checked out the better for your mom. If an MRI dosn't show brain mets, then they can check the next possibility. My dad had a procedure called Gamma Knife, it is NOT a knife, and there is no cutting involved. What it is is a concentrated radiation therapy. It is very high tech and only works on the brain tumers, leaving the healthy brain tissue alone. Therefore, there are barely any side effects. It is very effective. If you would like more info. please e-mail me. I first heard about it on this message board (the original version) from a woman named Kerry, whose father had it 2 times within a few years. We looked it up on Yahoo and found 2 hospitals where we live that do it (long island), and they had only opened in July-so dads oncologist didn't know about it. The procedure is not new, just more available. It has been perfected over the past 4 decades. There is always whole brain radiation as well. But the sooner this is checked out, the better. Also, I scheduled the MRI myself, because if I went with the appt. the doctors set up it wold have been a week and a half later than when I got him in... I simply called the hospitals radiology dept and explaind how concerned we were, luckily the woman said "can he come in now?" and he did. Please keep us up. Good luck. Take care, Deb Quote Link to comment Share on other sites More sharing options...
Ry Posted January 11, 2003 Share Posted January 11, 2003 Renne, it may be something as simple as dehydration. This will cause confusion and dizziness too. Try pushing lot's of water and see if it improves any. Quote Link to comment Share on other sites More sharing options...
renee Posted January 11, 2003 Share Posted January 11, 2003 I am terrified and confused. thank you for your advice deb. It made mom feel a little better also just knowing that someone else has gone through this it gave her a sence of direction. I will do as you suggested asap. Thanks again. To all of you Renee Quote Link to comment Share on other sites More sharing options...
Guest Estrea Posted January 11, 2003 Share Posted January 11, 2003 Sorry to confuse you, but please understand we are working to do what is best for you and everyone else out there...not to mention reduce costs. This is a better board and it has been donated...that's why we moved again. If you ever have any questions, please feel free to either email me (estrea@aol.com) or Rick (admin@freeimail.com). Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted January 12, 2003 Share Posted January 12, 2003 Renee-Very good advice about the MRI!! My mom had nsclc with mets to the brain. Those symptoms sound like ones that need checked NOW. You can see another oncologist for a second opinion but I would call your Mom's oncologist and tell him again about the symptoms and ask what can be done to find out why. Do not let him just say it is normal. It is not. I know some oncologists seem to brush off these symptoms (I have worked with several), you need to be pro-active, Drs. are working for us. At least they should be. Good luck, my prayers are with you and the other caregivers out there. Quote Link to comment Share on other sites More sharing options...
renee Posted January 13, 2003 Share Posted January 13, 2003 This just keeps getting worse and worse. she was diagnosed with stage 3b in September.... no treatments were done for 2 months, in that time she developed a third tumor in the left lung. We called the oncologist today and told him once again about the dizzyness and falling and memory loss, and of course we got the "That's normal" I know its not... for one thing lots of people are walking and driving themselves to treatment. He did finnaly tell us that she is now at stage 4 and she needs to go to a pain clinic. I suppose they just want to keep her comfortable until she dies. I broke down and mom was reasuring me...lol. how ironic. here I am the "care giver" and she is trying to make me feel better. I had to take a shower and compose myself. Please someone tell me of a survivor story with stage 4.... after been given 8 weeks of radiation. Sorry to be so long winded.... just having a bad day. Good luck to all of you and God bless us all. Renee Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 13, 2003 Share Posted January 13, 2003 Renee, Please forgive me but I've forgotten, does your mom have NSCLC or SCLC? When my dad was diagnosed (orig. SCLC-extensive stage which means stage 4) then it was changed to NSCLC extensive- it was still considered advanced which pretty much means stage 4. He underwent chemo, which the cancer never responded to because it is generally SCLC that responds. I'm not sure why the oncologist are NOT treating your mother. Whether it is SCLC or NSCLC, why did chemo stop? I think I remember you posting that she was having alot of side effects from chemo, but there are many different combinations of drugs. -yes the dizzyness is normal-if she has brain mets. I'm not sure why they wouldn't look into radiation or something, and even steroids to help relieve the swelling the tumors cause, thus reducing the dizzyness, etc.. Please forgive me for asking, but how does your mom feel about it? Did she refuse treatment? I'm so sorry that the doctors don't seem to be communicating with you. Were you able to get the referral for new doctors? Please keep us posted. I will keep you in my thoughts and prayers. And if your mom is up for it, maybe another doctor could give you more info. and offer a different approach. Take care, Deb Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted January 14, 2003 Share Posted January 14, 2003 Renee-It is time to get another oncologist to see your mom (unless she does not want any tx). You can call your family Dr and have him/her find another one in your vacinity OR call some of the larger cancer centers for referrals. How old is your mom, and how was health before the cancer? These may be some reasons the present dr is not doing much. There are tx tho that would make her more comfortable. Good luck. Also being one with ca, I know where your mom is coming from when she consoled you. It is a 'mom thing', we do not want our children, no matter their age, to worry about us. Let her console you when you need it, I feel better when I am able to let my girls 'unload' their worries about me. Quote Link to comment Share on other sites More sharing options...
renee Posted January 14, 2003 Share Posted January 14, 2003 OK lets see... mom was diagnosed in September with stage 3b NSCLC, no treatment was done until november so she developed another tumor and she is now at stage 4. I called the doc today and told him that she is out of meds and that I wanted a second opinion about her treatment, and if he would not refer her to another doc. I would go to the medical board at the hospital were he works. I told the S.O.B [ pardon the language] that my mother was dying and if something wasn't done soon I would find myself a good lawyer and he would wish that he HAD done something. It worked.... we had a CT scan done this afternoon on her brain and will find out the results in the morning. Her health was fair before she was diagnosed with cancer. She has had a history of pneumonia so her lungs were'nt very strong to begin with. Other than that she has not had any problems. She is 61 years old. She has started drooling and has lost about 20 lbs. even tho I shove food into her every day, all day. Just a bite or two, but it is something. She is more than a little dizzy... it's more like she has lost all balance or control of her limbs. She will loose a whole day.... she will visit with people go places or talk on the phone and not remember a bit of it. The doc. up until now, has called all of that "normal reaction to pain meds." Now she is on 20mg of oxycontin twice a day when she was on 50mg. Doesn't make sence to me. I don't think I will sleep very well tonight, but I expect there to be a tumor in her brain. I pray there isn't. Thank you guys for your words..... anything anyone posts makes me feel so much better not being alone. I still keep all of you in my prayers and I don't think I could ever express my gratitude for your concern. Renee Quote Link to comment Share on other sites More sharing options...
Debaroo Posted January 14, 2003 Share Posted January 14, 2003 Renee GOOD FOR YOU!! I know it is very difficult to go to a doctor and make demands, because we tend to hold them in such high regard. But using the fact that this is your mom as a source of strength must help alot. You did the right thing. My sister and I keep reminding eachother to remind eachother that we are doing all we can for our dad. You are doing all you can for your mom. And no matter what happens, remember that conversation with the doctor and the effect it had-it got things done! Like I said, maybe she dosn't have brain mets, but the sooner that is ruled out the sooner they can move onto the next thing to help your mom. And remember, if there are brain mets, there is something that can be done for them. Keep in mind that doctors are only human like the rest of us, and they can make mistakes just like the rest of us, both technical and judgement mistakes. My dad was misdiagnosed at first. It is our job to keep them in line, THEY WORK FOR US! And just like you or I could be fired for not doing our job, we can fire them if they don't do theirs! You are a good daughter. I guess that now it is our turn to take care of our parents just like they took care of us for so many years. Keep us posted, and I will keep you in my thoughts and prayers. Take care, Deb Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted January 14, 2003 Share Posted January 14, 2003 GOOD JOB RENEE!!! You must feel feel good about the fact that you now have done something to get that Dr off his bottom. Her symptoms could be several things, I thought a few months ago that my CA had spread to the brain, my speech began to get kind of slurry and I could tell I was having difficulty getting the words out. They did another CAT scan and all was ok, so we traced back to anything different and then my hubby remembered I had started on the neuontin(sp) for the neuropathy. I looked it up and there it was! Side effect-speech difficulties! So I stopped taking it and AMAZINGLY I was normal again (well normal for me ) But it could be brain mets, but it is always better to know so it can be treated. They might be able to do radiation to help reduce the size and steroids work well for the sweling. Keep the hope because there is always hope. Prayers are with you. Quote Link to comment Share on other sites More sharing options...
Guest Sovereign Posted January 15, 2003 Share Posted January 15, 2003 Hi Renee, So sorry to hear about your mom's troubles. I don't know if you are trapped by insurance or what but that sob, should be fired. On my birthday in sept I saw my oncologist who turned into a troll that day. I told him I was having problems with my thought process and he told me I probably had more metastasis. He refused to do anything further for me unless I would agree to radiation or chemo. I asked him how he could make such a statement without fisrt running test such as a brain scan to see what the problem was. He held his position and I left crying. I developed a headache that I attributed to the crying only it got worse over the next 3 weeks. I finally had squiggly lines in my vision like an old tv being on the outer limits station. I went to the ER and told them I had cancer with brain mets and thought the mets returned. The ER doc did not want to do a CAT scan so I told him I drive my 4 year old 12 miles to headstart, she's hearing impaired, and asked him if he wanted to be responsible for me having a seisure and an accident. To make a long story short they did the CAT scan and 1 tumor showed up. The follow up with the neurologist was for an MRI in 5 mm slices, it showed 2 more tumors then a gamma knife 1 mm slice MRI showed yet another tumor. It seems CAT scans will only pick up the larger tumors more than 1/2 inch. I was on decadron for two months and had every side effect known to the drug so steroids can be both a blessing and a curse. I am still having after effects from the steroids, hip and knee problems. Hang tough and keep those doctors on their toes. God Bless, Eileen Quote Link to comment Share on other sites More sharing options...
Guest Ruach Posted March 7, 2003 Share Posted March 7, 2003 with all the untreatable places cancer shows up, at least they have Gamma Knife to treat brain mets. If left untreated, their symptoms can be really scary -- but treatments indeed can be quite effective (I know from my Mom's experience). but keep in mind... alone, gamma knife is not a curative solution -- if the primary is not controlled, metastasis will likely continue and follow-up gamma-knife treatments required (along with other treatments as necessary, for other metastasis). Good luck... I've also seen my share of stubborn old Dr's who (a) refuse to listen to their patients ( think they know what's best for the patient in all cases, and that all patients can't think for themselves © won't acknowledge any treatments as being valid unless they [or a close affiliate] perform it themself. Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted March 7, 2003 Share Posted March 7, 2003 Yes very good for you renee AND i can not believe this doctors actions at all!! I would say something to the hospital anyway asking if this is how all their oncologist act? PLease keep us posted!! I hope you are holding up!! my dad is on OC 60 right now and god knows he is out there but he in no way forgets stuff or is dizzy! shame on that doctor for not being more proactive for your mom's sake! Quote Link to comment Share on other sites More sharing options...
mirrell Posted March 9, 2003 Share Posted March 9, 2003 hi renee, wow, congratulations. i sure hope she is doing better. i am thinking of you and patting you on the back for taking the bull by the horns. let me know how she is. mirrell Quote Link to comment Share on other sites More sharing options...
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