natalie

Al- My mom has Kaiser. I find that with Kaiser, the patient really has to get involved and be proactive with their care. Question the doctors, ask them why you don't have an oncologist (you should have one) and get a second opinion. Kaiser took 3 1/2 months to diagnose my mom. She had all the symptoms of a brain tumor but they wouldn't give her a CT scan because of the expense of the xray. Finally we got a scan after threatening lawsuit and low and behold, there was the tumor staring them right in the face. She had to go into emergency surgery and came close to dying. Al, I'm sure you are fine, but make sure that they've taken all preventative measures to reassure you don't get the cancer again. My intent is not to scare you. I think you are in a good position and just want to keep you there.

Good luck on the scans Lenny. I am saying a quick prayer for you. Let us know how it goes.

Rana- If you could pull it off you should go somewhere for a couple of days!!! I turned 30 last Thursday and my husband and I decided to go to Las Vegas while my aunt and uncle were in town keeping my mom company. I actually was able to have a good time and escape reality. I told the MGM Grand that it was my birthday and they upgraded our room to this huge "celebrity suite" as they called it. It had a jacuzzi in it, it's own bar and a room over looking the strip. Then my husband and I combined won $800.00! I just hope the luck keeps happening as my mom's MRI results are coming in tomorrow. When I was in Vegas, I had a couple of 5 minute depression moments, but I actually was able to laugh, have fun and actually forget about things for a while. Wierd things happened while I was there... A guy I was playing craps next to, volunteered the information that his father-in-law has lung cancer, then at the black jack table, a woman volunteered that she had breast cancer and beat it...out of no where. I didn't even mention about my mom to the lady at the black jack table...she just said she deserved to win and then went on with her story. It was strange...it was like they were angels talking to me letting me know that there are others faced with the same tragedies everywhere I go. Happy Birthday Rana! I bet your friends and family will make it extra special for you at this time. From your fellow Leo.

Thanks Terre, Donna, Jonathan, Don, Karen and Peg! I appreciate all your feedback and response. This cancer thing is so horrible. I feel like a mental case...one day I'm feeling great and positive and the next, a doctor can make me just come crashing down. They always want you to be "realistic". Just because I don't want to talk "realistically" doesn't mean I'm naive, I DO understand the situation, I just opt for "hope". I'm going to do everything in my power to help my mom beat this $%&**& thing. Now I'm mad. Watch out cancer, here I come!!!

I am so sorry for your loss. Margaret sounds like a strong, miraculous woman. If I remember correctly, you mentioned that you were not a religious person, please forgive me if I remembered wrong. I'm about to go "religion" on you... In no way am I trying to be evangelistic, just trying to offer you some comfort. I feel that she is an angel watching over you now and is with you every day so anytime you feel a wind blow imagine it's her giving you a kiss. I don't know if you feel like me, but my biggest turmoil and fear that I have thought about is life after death and no purpose to life. Read this months Reader's Digest there's an article on life after death. I know I've question my faith quite a bit lately and reading that article gave me much comfort. It mentioned people that had near death experiences and they saw members of their family waiting for them on the other side...scientists are starting to belief there is a life after death. That article gave me great comfort knowing that there is a purpose and that we will see our love ones that have passed some day in the future. I offer strong condolences.

That was cute! My favorite horse was the one on the right.

Oh! I forgot to say Thank you! Thank you to you all who responded so quickly, I really appreciated. Now I have another favor...can you all say prayers that my mom's MRI comes out clean? As all of you have experienced, the anxiety of this is just so overwhelming.

Well, I just got back from the hospital and the oncologist decided to postpone chemo today because she wants the results from a brain MRI that they scheduled yesterday. My mom has been having some headaches so she wants to see if she has more lesions or if her existing ones have grown. She said she will get the results on Friday and from there she will decide whether to schedule a chemo appointment for the following week or not. We have a neurology appointment for Aug 20th, so I asked our oncologist if she could expedite the appointment to sooner if my mom does in fact have some brain lesions that need addressing (I've expressed interest in Gamma Knife). She said that we could see a neurosurgeon, but that it wouldn't serve much purpose...then she trailed...I was afraid to ask anything further. The doctor gave me the impression that if they found more lesions in her brain that they weren't going to do anything any more at all...so right now I'm trying to figure out what to do proactively. I'm hope it's okay to postpone the chemo for a couple of days. What do I do here? If we do a clinical trial, we do it all on our own (the HMO we are with doesn't have any clinical trials for my mom) and it scares me because what if I pick the wrong one? Should I pick a Phase III trial as opposed to a Phase I or II? Since they are just giving her palliative care there at the hospital, I'm wondering if I should recommend to my mom to just go straight to a clinical trial in hopes of a CURE as opposed to PALLIATIVE.

My mom has experience severe numbing in her fingers and feet from the carbo/taxol treatment. She's tried two different nerve drugs that are suppose to help with the numbing but it has not. The doctor said that if it didn't get better by tomorrow (which it hasn't) that she would put her on a new chemo treatment. She said that she was going to give her Gemzar probably and only Gemzar because all the other chemo treatments have side effects of the neuropathy. I would rather have my mom treated with 2 chemo drugs as I have read they are more effective than just one. Has anyone been taken off a chemo treatment for the same thing and if so, what was your next protocal? Thanks for your help. My mom's appt is tomorrow so prompt replies are very much appreciated!!

That is great news!!! I'm am so happy to hear it!

Shelly, I can't even imagine how you are feeling right now. I'm thinking and pray for you and your family. I read an article last night in this months readers digest regarding near death experiences which is what it sounds like your mom just went through in that short time she stopped breathing. It was amazingly very comforting...it may give you some comfort in reading it. Take some small breaks from the hospital and go outside and take deep breaths and smell the air...it always helps me to collect myself and prevent panic attacks.

have they given you pills for the nausea? I actually had to ask my doctor for the nausea drugs, they never willingly offer them for some reason. My mom has two different ones. One strong one that she takes for three days after and one that she takes regulary. She hasn't had any nausea and she takes it before she feels anything. She's on taxol which is the cousin to taxotere (i think)

Hi Peggy- I would call the doctor when you have time alone to ask your questions. You have very good questions and deserve the answer. My mom doesn't like the questions either during appointments, so I reserve some of the scary questions by bringing a notebook with me, writing them down (so I don't forget) and call the doctor the next day. Good luck.

Hi Mike- I'm going to call you when I get home. My mom was treated in the Bay Area. Now she's getting treated in Sacramento so I can be involved, but I talked to some people and may be able to help guide you in the right direction. Talk to you soon. Natalie

Christy- We had some real negative doctors...really awful ones. They go by statistics...which are mostly outdated and skewed. My mom went through 3 doctors before I found the one she has now. I realized that I was the one who had to be blunt and tell them what we (my family) was looking for before they could spew statistics or give me that awful tilt to the side, firm lips nod. I told the current doctor on our first appointment before she had the chance to speak, very bluntly, that we were not interested in statistics or time frame. I told the doctor that we wanted a doctor who would be positive, get to know us as human beings, would be willing to research all treatments and be open to questions. She looked at me and smiled and said, "I can certainly do that." She then asked how long my parents had been married, where my mom was from, got to really know my mom. It helped turn the visit around. It wasn't a 100% clinical visit which was a little refreshing at that point. I think that if the doctor gets to know the individual better then they might be more apt to want to fight for you more. If you feel uncomfortable with the doctor, get another one. I think finding the right doctor is one of the most important steps to this whole process. Christy, I know 4 people (with various cancers) that have been given such and such time to live but are still here now years later. My mom is not an idealist and the doctors before were trying to force her to deal with it the way they think she should be dealing with it. They don't know what its like to be told you have lung cancer, etc., so how can they possibly know the best way to deal with it? She doesn't want the facts, and it helps her remain positive. The previous doctors think it's unhealthy but I on the other hand have acted as her advocate so that she can be removed from the facts and focus on her health. It works for her for the time being. Wow, I'm on a soap box here. sorry.

Hi Kathy! I'm sorry to all those I don't reply to posts. There are just so many of us on here and I wish I could answer to everyone. I access this at work so I respond to those that I feel I can contribute. I care about each and everyone of you on this board going through this. Have you read Lance Armstrongs book? He offered my mom so much encouragement and I highly recommend it. My mom read it last month and she talks about him all the time now. Whenever she feels down she thinks of him. She has been watching the Tour de France all week and it reminds her to be hopeful.

My mom is currently doing the Taxol/carboplatin treatment and just finished her second treatment last week. She has extreme numbness in her feet and now to her fingers. The numbness started immediately after the 1st treatment. To relieve her from the numbness, they gave her a drug (starts with an N, but I can't remember the name of it) that she takes incrementaly larger doses each week, but it's not working. The doctor said that if it's not relieved by our next visit to her, she would put my mom on another protocal. The doctor said the Taxol is what is causing her numbness and that it is nothing to worry about, but that she'd rather change my mom to another treatment that causes a lesser side effect. What's the next best line of treatment? Have any of you experienced this numbness? Aside from cramping in her stomach for a couple of days, that is the only other side effect she's had. Thanks for your feedback, I appreciate it!

Hi Julie- My mom also was diagnosed similarly with 3 brain mets and a large mass in the left lung. She lives a hour and half away from me too. (Her and my dad recently just decided to move from San Jose and move here next to me in Sacramento) Having her closer is a god send. I thought it would be impossible and couldn't believe I would be so lucky to have her near by so soon. I'm new to this whole thing like you too. My mom was diagnosed the first week in May and I have ups and downs but I'm definitely better than when I got the initial news...THAT was awful. I find it easier to deal with things when I'm with my mom. When she's away from me, I worry more and get depressed. I bet you feel that too. One thing that's really helped me is getting my mom to try supplemental (vitamins, Noni juice, etc.) things while she does chemo and it gives me hope...it gives her hope. I also try to keep up to date on new clinical trials and treatments. That also gives me hope. I tell people what I'm going through and there is always someone that can offer me a "miracle" story. It really helps to hear those survivor stories. Please feel free to private message me anytime. We are here for you and will offer you any information we can to help your mom fight this disease. One great thing about the people on this board is that we are all "fighters". I feel empowered by that.

Christina- I hope you can find someone to help you! You certainly have a large amount on your plate and shouldn't have to do all this by yourself. If I were in your shoes, I would have a small ceremony for family and close friends soon. My grandfather was cremated and we had a small ceremony in front of his plaque. It was a beautiful day outside and it was just close family members and it was short and simple. We did a family, friends, aquaintance thing separately Don't even think about the party yet...take it one step at a time. Once you have the small ceremony, then I would gather up a committee of people to help you plan the memorial party. I think you could have a memorial party anytime...2 months from now, 3 months, 5 months from now and it be completely appropriate since you did your small ceremony. I think it's a great idea to have a memorial party. You shouldn't have to plan around anyone elses schedule with the exception of close family members. You pick a date, if they are true friends, they will find a way to be there. Christina, you need to have your time to grieve. You take care of yourself and take it one day at a time.

'Dramatic' drug trial results offer hope for cancer patients Press Association Monday June 2, 2003 Early trials of a new cancer wonder drug have shown a "remarkable" effect in treating a wide range of the most common forms of the disease, scientists said today. The experimental drug, which has been given the trade name Omnitarg, attacks even the advanced stages of breast, prostate, lung, ovarian, bowel and pancreatic cancers. Also known as 2C4, the drug uses the body's own immune system to fight the disease by targeting a signalling pathway common to many different cancers that stimulates tumour growth. Scientists are excited about the drug's possibilities for treatment because dramatic results were seen in preliminary trials, which are chiefly meant to test the safety of a new drug, not whether it works. Dr David Agus, who led the trial at the Cedars-Sinai Medical Centre in Los Angeles, said: "What's interesting is that this drug effectively shrank tumours in several completely different types of cancer in early stage clinical trials. This tells us that the drug targets a growth-signalling pathway in cancer cells that is common in many solid tumours." In the study, 21 patients with advanced cancers received Omnitarg by infusion at three week intervals. A total of 19 patients completed at least two cycles of treatment, and two died at the outset due to complications of their disease. The researchers found that in 42% of the treated patients tumours either shrank by up to a half, or stopped growing. Three patients achieved partial remission - one with ovarian cancer, one with prostate cancer and one with pancreatic cancer. The ovarian and pancreatic patients remain in remission and have now been receiving Omnitarg for over a year. Five additional patients - three with prostate, one with lung and one with ovarian cancer - stabilised for at least three months after two treatment cycles. Dr Agus, who presented the results at a meeting of the American Society of Clinical Oncology in Chicago, said: "To see results that show activity in a safety trial is remarkable, especially since these patients were in the advanced stages of their disease and had no other treatment options open to them."

Shellie- I will pray for you and your mom. Please let us know when you find out. I will be thinking of you.

Rana! I'm so terribly sorry for your loss. My heart aches for you. May you find comfort in the memories you have shared with your mom. You are a great daughter and she is probably talking to God right now about how proud she is of you.

I agree! Some people really don't get it! Luckily I've had a lot of support, but I've also discovered who I need to disassociate from. I had one of my friend's call after five weeks of my telling her about my mom (first time I had heard from her since telling her). (She was the first to tell everyone about my mom as if it were the latest gossip.) She left me one message that said, "I know you are having 'personal problems', but I haven't heard from you and feeling a little neglected" Personal problems? how minimizing! She's feeling neglected? I didn't call her back, then I heard from another friend that she was telling everyone she was mad at me and couldn't believe I would do this to her after living with her for 7 years, blah blah blah. She's clueless. It really doesn't come as a surprise. I think when you go through something like we are all going through, there's a finer sense of clarity. I always knew deep down she was selfish...but now I have some sense of clarity as to what is important in life and I REALLY see the things I didn't want to see before. I find this new clarity as a gift. Life is too short to spend time with negative people or people that wear you out. There's already family members that are difficult to deal with, but they are family and you can't do much about that, but friends? If someone really sucks as a friend then it's time to kick them to the curb!

Oh! The new stadium is beautiful! If you go see the Phillies you can go see the new SF ballpark!

How fun! I am very familiar with the northern california area. I'm going to list things South to North as if you are driving down to San Francisco from San Diego. If you can, check out Monterey and go to Cannery Row. "Bumba Gumps" is a great restaurant where they serve buckets of shrimp. There is a aquatic museum center there too. You can rent kayaks and go on the beach and get a real close look at the seals. There is also diving equipment and bikes you can rent. Santa Cruz beach boardwalk and wharf is fun. If you have kids they will love this too. San Jose: There is a tech museum for computer whizes. Lots of nightlife with great restaurants in downtown San Jose. There is also a cute new Italian looking outside mall with some very nice stores called "Santana Row." It has a lot of character. Palo Alto: go to University Avenue for some shopping, lunch or dinner. Stanford University is right down the way. San Francisco: Fisherman's Wharf, North Beach area for dinner, Pier 39, Union Square (for some shopping), Palace of Fine Arts/Exploratorium ...if you have kids they will love the Exploratorium (Science Exhibits) Feel free to email me for info! I use to live in San Francisco and I'd love to help you with your trip!