Marci

Hi All, How thankful I am to have all of you here, although I would have chosen a healthier reason as to why we are all here together. I do agree for a 2nd opinion and yes my mom is currently on the gemzar/carbo cocktail right now but I always try to think ahead for the next game plan sort of like a real nasty game of chess before your opponent jumps you. I feel as if I have had to educate myself through this process without any help from her oncologist. I am not angry that he may not want to do something right now but to know that he is not aware of all this is what makes me angry. My mom always cringes at thought of having to go and start over with someone new , the energy that drains from her just thinking of preparing to go is overwhelming. I am sure you all know what I mean. What takes a healthy person to get ready and dread going to appointment after appointment is 50 times harder for her and others with this disease debilatating her day in and day out. Again, thanks guys for all your support and advice I don't know how I would have managed so far without any of you. Hope life finds you well these days. Marci

Patti, Thank you, yeah I think it is time for a 2nd opinion. He knocks down everything that we researched even Radio Frequency Ablation. I cannot believe someone went from 4 to NED. Thank is wonderful!!! Hope these days find you feeling well and happy! Marci

Hi All, I have noticed alot of people on this site that take Tarceva. I had inquired with my mom's Oncologist and he knocked it down right away saying that studies show that only Asian descent women had benefited from this and that he didn't recommend it. I feel very frustrated b/c I see others who are not of that ethnicity group on this drug and I feel like he may not be aware of how many others are on this. I noticed on Ned's and Sandra's posts that they have or will be taking it. Just frustrated that he may not be aware as a professional of what is working for others. Any advice or comments? Marci

Thanks Carol for the info. I check into any options out there and then present them to my mom. Sometimes she shoots it right down but sometimes not so will try anything she is willing to do to stop this disease or at least control it. Again thanks for the Docs name Marci

Thanks guys, I do appreciate that. Yeah, I figured it wouldn't be that easy!!! My mom said the same thing that a person protecting themselves before cancer is different than one who already has it. I guess at times I am looking for a quick fix to relieve my mom's side effects etc. but have to be careful. Ned and Judy hope you are doing well. Thanks- Marci

Hi All, With all these different supplements out there and also being on certain medications its so hard to know which ones would be good. My question is what is the name of a person that specializes in that? Is it a herbalist? I also see some acupunturist are both. So confused here!!! Thanks! Marci

Thanks, I am not advertising anything just curious about things I am hearing and seeing out there. Marci

Hi All, Just curious as to know if anyone has heard of Zeolite and if anyone has taken it as a supplemnet to help in the fight against cancer? Zeolite which they say is a supplement of volcanic rock/ash they claim that is has cancer fighting abilities. Please let me know if any of you have heard of it and I would be interested in opinions. Also, I read broccoli sprout supplement can help in the fight as well, of course I am not making any claims since I have just read things here and there but Memorial-Sloane Kettering has something on there website which is a cancer hospital and they have something on there with the sprouts, maybe a clinical trial. Trying to cling on to whatever I can but want to be smart about it, I would never want to put my mother in danger with these. Thanks- Marci

Thanks Everyone for listening. I am trying to be more patient and understanding. I guess I just lost it today. Thanks for listening- Marci

Hi All, Just venting here. I just came into work and really can't focus right now. I just left the house this a.m. and had a blow out with my brother in which my mother witnessed and its just not good. My brother just turned 18 and is the baby of the family. He has always had everything done for him by my mom and myself and everyone else around. But things need to change a bit now I believe. My husband and I work F/T I do my mothers appointments, I clean, shop, cook, and my husband helps with the laundry all weekend long. He never gets to have any time to himself my husband b/c he is doing our laundry, my brother's laundry, my mother's laundry etc. I believe we should be doing ours and my mothers but my brother is 18 years old and is well and abled. I know he is young and this is hard but its hard on us too. He was home all day yesterday and walked by a bag of garbage and never brought out all day never walked to the mailbox for the mail. When I got home from work I got the mail and took out the garbage that he walked by all day. He spends his evenings out with friends every night socializing away from all that is going on. My husband and I are at home after work bringing the garbage out, laundry, cleaning etc. I find this unfair that we get no help with anything and I threw a fit. I guess I just hit a breaking point right now. We have always spared my brother from everything treating him like a king but reality is that can't be done anymore. Maybe I was wrong and now my mom is mad at me b/c she said I was picking on him. Once again, sparing him from all that is going on I believe. Sorry to vent just had to. Marci

Please know I am holding you and your mom in my prayers. Blessings, Marci

Hi All, Well, we met with the Onc. Doc yesterday and he gave us 2 choices of regimens to fight the cancer. The 1st was Carbo, Taxol, & Avastin which he said was very strong and had numerous side effects and dangerous ones especially b/c he said he had to inform mom that Avastin can cause strokes and heart attacks in rare instances but he doesn't know if my mom would be the rare case. Also, he told my mom her hair which is so pretty right now will immediately be gone. She was stunned with all this to say the least. Then he said well the 2nd regimen he would recommend if she says no to the 1st one would be Carboplatin and Gemzar which is more easily tolerated by people he said and likely my mom's hair would stay. My mom is leaning towards the Carbo/Gemzar one since she wants her hair and also wants less side effects. I am hoping this will help her with the new metasases she has now. I know hair should not be a consideration in this but its not happening to me with all this hair I have and my mother's hair was always her crown and glory to her. What an emotional and mental torture this is. Any info. on the treatments would be appreciated. Marci

Hi Tammy, My mom went through the same thing she did not get all of the side effects of chemo until afterwards. I believe their called late effects of chemotherapy. I had found info. on the American Cancer Society website as well as the Mayo Clinic has a piece on their website. Since we are all different some experience all, or some, or even late side effects. My mom did not lose her hair w/chemo but had thinning months later and she has continued and ongoing neuropathy. Hope this helps and I hope your mom feels better soon! Marci

Dear Lilliee, How I know what you mean questioning everything, if all has been done that can. I feel the same way with my mother and since we are not doctors ourselves I think we will always question the care and treatment they give b/c we want what is best for our loved ones and feel a sense of control in this crazy journey. Pray for the right answers and pray that the docs will be instilled with the right way of handling your dad's care. What we are going through is giving up control to the docs to do their job right and hope they are. Although, it is our job to question them and demand the best for our loved ones. I will pray for you and your dad that he will respond to his treatment plan now and have a speedy and painless recovery from what is going on. Love Ya- Marci

Hi Everyone, Well, my Mom is home recovering with staples and stitches etc. on her stomach from the surgery. It has been so rough for her. I stayed home for the week from work to care for her and comfort her. Not sure what I am planning on doing next week, she insists I go back to work since I am not a millionaire yet! Its funny how JoeB said the same thing my mom said about maybe it started in the colon and reached the lung. In my post, I mentioned my mother always had stomach problems for years and no one even gastro docs could not find anything. These things can be the smallest things I guess that grow and turn into big things and then you really take notice. I am not even sure if the docs know where this started. Anyway, I wanted to thank you all. You keep me going everyday! I hope you all are feeling well and enjoying life. Even through the most roughest parts of this I still insist her and I enjoy even just a minute of happiness between the bouts of the pain. Talk with all soon! Love Ya's Marci

Hi All, Thank you all for responding and praying for me and my mom. I truly appreciate it. Sorry I was late replying back so much going on. You all know how it is unfortunately. Talk with you all soon. Hope all of you are doing well and are feeliing well. Blessings, Marci

Hi Everyone, I can't remember what I posted last- I have been so overwhelmed lately. My mom's petscan had come back with bad news on Friday -7/25. You won't believe what happened next - After receiving the bad news on Friday my mother went home and my family came over and we rallied around her - she had a few scotches to calm her nerves after receiving the news. We went to bed and I went up to see her Saturday a.m., she was complaining about stomach pains -gas and stuff. My mom always had a very bad stomach her whole life with gas etc. so my stepdad and I figured it was just that. We kept checking with her and laying w/her she would tell us just lay don't talk she kept saying she just needed it to pass. So we waited but then after a couple of hours like 2 or 3 we said this is not right. So my aunts dropped by and convinced her to go to the emergency room (my mother can endure alot of pain) I am the complete opposite and I am big baby!! Anyway after arriving at the emergency rm they found out my mother needed emergency surgery to her small intestine b/c there was some blockage there and a perforation. They told us b/c my mother's body was so comprimised she may not make it through. Well she did -thank god!! She is in ICU now still healing from that surgery. The scary thing though is that the surgeon did say it was a tumor that was there and that we have to wait for the pathology to come back. Things are just getting worse and worse. I just can't believe that the tumor never showed on the petscan -very strange but I have no medical expertise so not sure why it didn't. Please pray for my mom for a miracle. I am sorry I can't be an ear for you guys right now but promise when things slow down I will, but I do think of you all as my second family in some strange way that we are connected by this horrible stuff. Marci

HI ALL, WELL WE GOT THE RESULTS BACK AND OUR JUST DEVASTATED. THEY SAID THAT MY MOM HAS A TUMOR IN THE CENTER OF HER CHEST, A SPOT ON HER SCALPULA, AND A SPOT NEAR HER BUTT AREA BY THE HIP. I JUST CANNOT BELIEVE IN THIS SHORT OF TIME ALL THIS TOOK PLACE IN HER BODY. I AM JUST BESIDE MYSELF. THE REPORT READS AS FOLLOWS IF ANYONE HAS ANY INKLING TO IT: FOCAL INTENSE ABNORMAL METABOLIC ACTIVITY WITH A SUV OF 6.0 FUSES WITH A SOFT TISSUE MASS IN THE ANTERIOR MEDIASTINUM CONSISTENT WITH METASTIC DISEASE IN A PREVASCULAR LYMPH NODE. ALSO NOTED ARE FOCI OF ABNORMAL METABOLIC ACTIVITY ADJACENT TO THE RIGHT SCAPULA AND AT THE SUBCUTANEOUS MUSCULAR JUNCTION OF THE RIGHT GLUTEAL MUSCLE CONSISTENT WITH SOFT TISSUE METASIS. THE ONCOLOGIST SAID WE WILL DO MRI AND BIOPSY THE BACK AND THEN PROCEED WITH CHEMOTHERAPY. HE SAID THIS DOES LOOK WORRISOME. NOT SURE IF I SHOULD CONTACT HIM PRIVATELY (I AM HER HEALTHCARE PROXY ) TO SPEAK WITH HIM ABOUT THE REALITIES OF THIS. WORRISOME OF COURSE BUT I NEED TO KNOW WHAT IS THE OUTLOOK FOR THIS AT THIS TIME. SO SCARED OUT OF MY WITS CAN'T IMAGINE HOW SHE FEELS , AND ALL I CAN DO IS HOLD BACK TEARS AND TRY AND COMFORT HER. THANKS FOR LISTENING AND ALL THE KINDNESS- MARCI

Thanks for the replies. I really do rely on coming on here for strength. I just feel very weak right now and I think I am having a breakdown. I have been good for sometime and thought of myself as being strong for not breaking down and carrying on with things for everyone but feel one of those breakdowns approaching and sometimes it just comes on me abruptly when I think of the reality we are in right now, as I write this I am sobbing on the computer at work with no one around thank god all have gone home for the day. Need to pull it together and get some strength together. Thanks Again for your kindness and concern- Marci

HI ALL, TODAY IS MY MOTHER'S PETSCAN AND WE ARE SCARED TO DEATH OF WHATS TO COME. TUESDAY NIGHT WE WERE IN THE EMERGENCY ROOM B/C MY MOM WAS HAVING SHOULDER PAIN AND NECK AND BACK PAIN. THEY DID A CATSCAN TO CLEAR HER OF ANY CLOTS ETC. AND DOC CLEARED HER OF HAVING HEART ATTACK BUT WE DO NOT KNOW WHERE THE PAIN IS COMING FROM NOW. ALLS THE EMERGENCY ROOM DOC SAID WAS TO GET IN TOUCH W/ONCOLOGIST AND HE KNEW SHE WAS GOING FOR PETSCAN ANYWAY ON THURSDAY SO WE TOOK THE REPORT WHICH HAD SOME THINGS UNDERLINED AND WE WENT HOME READING IT THINKING THIS DOES NOT SOUND GOOD THE EMERGENCY ROOM DOC FAXED IT OVER TO THE ONCOLOGIST ON WEDNESDAY AM RIGHT AWAY WHICH WAS SCARY HOW FAST HE SENT IT TO HIM AND TO MY MOTHER'S PRIMARY DOC THEN THE PRIMARY DOC CALLED AND INFORMED US THAT SHE FAXED IT TO ONCOLOGIST AS WELL . I AM SCARED TO DEATH THE CANCER IS BACK. I DON'T KNOW WHAT TO DO I FEEL SO LOST AND SCARED AGAIN. THE CALM PERIOD IN WHICH WE WERE IN IS OFFICIALLY OVER, WHERE IN BETWEEN THINGS WERE OK IT SEEMS WE ARE BACK ON THIS FEAR ROAD AGAIN. I AM FEARFUL FOR MY MOM NOW B/C OF SEEING HER IS THIS MUCH PAIN AND MY HEART BREAKS INSIDE AND I HAVE TO HOLD BACK TEARS TO STAY STRONG IN FRONT OF HER TO NOT GET HER SO ALARMED. I WAS SHAKING IN THE EMERGENCY ROOM NEXT TO HER AND SHE SAID STOP SHAKING WHY ARE U SO NERVOUS, I LIED AND TOLD HER I WAS COLD. ON TOP OF EVERYTHING ELSE MY JOB IS ON THE LINE - I MISS DAYS ON AND OFF DEPENDING ON WHATS GOING ON WITH MOM AND I HAVE OFFICIALLY RUN OUT OF VACATION DAYS, SICK TIME, ETC. THIS BALANCING ACT IS NOT REALLY BALANCED ANYMORE. NOT SURE WHAT TO DO ANYMORE - SORRY FOR ONGOING VENTING ETC. JUST FEELING SO SCARED AND LOST OF WHAT TO DO ANYMORE. MARCI

So very sorry for your loss. May you find peace in the days ahead. Marci & Family

Hi Carole, Thank You for your reply, I agree the best treatment is what I am looking for her not locations etc. Hope you are feeling well and enjoying the summer. Marci

Hi All, Haven't been writing in for awhile now although I check the posts daily to see how everyone is doing. I have been busy with functions you know this time of year they all happen at the same time! My brother is graduating high school on 6/27. Mom is so proud and grateful to be able to experience it with him. Lately, Mom hasn't been breathing very well, she had a cold and they put her on Levaquin although she told them she never responds to that, she wanted Zithromax but had to fight for it after the Levaquin. Patients know their bodies and yet Dr.s do what ever! I finally convinced my Mom to go to another Pulmonary Doc. the one she got referred to couldn't see her for a month - what good is the referral if you can't get to see the Doc. So anyway now she is finally convinced but has alot of anxiety b/c the Doc. I found is highly recommended by alot of people but isn't affiliated witht the hospital she goes to. Does anyone have the same issues with different docs in different affiliations. My goal is to get her breathing better and not worry about what hospital the doc. is affiliated with. Please give any advice on this or if you think its better to stick to all docs in the same hospital. Its frustrating b/c some of the best are from different affiliations. Thanks- Marci

Hey Kristi, Boy, do I know what you are going through. I go through the same thing with my mom's siblings not my own actually, they are my aunts and my mother's sisters so they are older then me of course and I have always been taught to respect my elders but sometimes they are just so wrong. Its very frustrating b/c you are living it all out day by day and your other brother who is not there is not. My husband once said about one of my aunts boy it sure is easy to give orders and opinions when your not the one here actually doing everything for your loved one. I know you feel overwhelmed and then to think that loved ones like that would give you support now more than anything else. I really don't have any words of wisdom for this except for what I started to do was instead of volunteering info. outside of the home I would only give out what was necessary information. I know that is a fine line for you b/c he is your brother and these are his parents too. You also can suggest him coming to help with the things you do - not sure if he lives locally or not but I did that as well and those with the biggest opinions started to quiet down. Good Luck and remember you do need some time for yourself or you will tire out and not be good to your loved ones. It is ok to take a break. Good Luck and Rest Up Yourself, Marci

Hi Shannon, So happy for you right now. Enjoy every minute of it with her! Congrats on your baby coming! Wait till you are able to tell your baby when they are older what a blessing they were coming to give joy to your mom and you now when you both need it most in your lives. Continued Blessings, Marci