kzander Posted September 5, 2003 Share Posted September 5, 2003 This is only my 3rd post to the message board, but after reading a few of the new topics, I felt I had to post. As I had explained before, my mom is a 47 yo mother of three girls. Over the summer she had been experiencing re-ocurring blood clots, when they finally did a CT scan to test for malignancies in the body. She saw a pulmonologist who concluded after a biopsy that she in fact did have Non-Small Cell Lung Cancer with possible spread to the lymph node system in the middle of the chest. Obviously, this came as quite a shock and we immediatly went to Mayo Clinic in Rochester for a 2nd opinion. Mayo Clinic turned out to be nothing but a nightmare. Upon arrival she was immediatly hospitalized with a deep vein blood clot in her right leg and in her neck. This in turned slowed testing down. The oncology department was so full that she was placed on the "dirty blood" floor and oncologists had to come to her. Everytime they came in the room they came in groups, and it seemed as though everyone had a conflicting opinion. One doc. would say this, one doc. would say that. Some gave her hope, and others completely dissmissed it. Finally, on the last day of her stay they were able to do a PET scan which concluded that her cancer was in a small spot on the left lower lung, in her lymph nodes in her chest, in two lymph nodes behind her esophogus, and two nodes in her neck. They turned her away with a chemotherapy perscription to "bide her some more time." The considered her inoperable as well. Needless to say, the family was CRUSHED. My dad and sisters and I had felt like we already lost our mom. This lasted until Wed. of this week, when she went in for her first chemo treatment in Bismarck, N.D. There was assigned a new oncologist for her treatment. This was where the ray of HOPE came in. She met with the new oncologist Dr. Amin -- he felt that the PET scan they had done in Mayo was inconclusive. She had SO many blood clots in her lungs, legs, neck that the PET scan may have picked these up as tumors. He feels PET scans pick up things that are not always cancer. She was not staged at the Mayo Clinic, and this new doc. felt that if she was still considered a stage III they were going in to operate. He felt she had a VERY good chance of beating this cancer and moving on! After hearing this good news, she went in for her 1st chemo treatment consisting of Taxotere and Carboplatin. It took 3 hours long and she has another treatment in 21 days. He feels they have to do the chemo 1st in order to shrink the possible tumors to help relieve her of these blood clots. After 4 chemo treatments he is going to go in with another biopsy procedure to take a look for himself, and then possible surgery. It was our 1st good day in a month! I just felt I had to share this story with all of you out there. It seems as though every doc. says something different and we are all dealing with the same disease! Something needs to be done!! My mom claims she was so dissatisfied with Mayo that she WILL NEVER GO BACK! Sorry this was so long, but I had to share!!! Quote Link to comment Share on other sites More sharing options...
norme Posted September 5, 2003 Share Posted September 5, 2003 Kristy, I know how you feel regarding all the different treatments. I don't understand why some get surgery, others don't. YOu would think that there would be a listing to go by, if you have such and such you do this, etc. It doesn't work that way. Also, some drs think of lc as death, others want to fight it for the patient. It is very confusing.....that is why, second opinions are so great I guess. Will say a few extra prayer for your mom and all of the family...Its a long hard road ahead so hang on and join the fight for survival.. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted September 5, 2003 Share Posted September 5, 2003 Kristy, sounds like your mom is finally in good hands. Please keep us posted. My wife took Carboplatin/Taxotere as her chemo and it was effective. Blessings. Don Quote Link to comment Share on other sites More sharing options...
rinksgal Posted September 6, 2003 Share Posted September 6, 2003 We almost went to the mayo clinic in Rochester, but it would have been a very long drive and he didn't really feel up to it. Instead we went to the James Cancer Center in Columbus Ohio, which is only an hour drive for our second opinion.. We have decided at this time to stay there. After reading your article I'm glad we didn't go there now!! My s/o starts taxotere in about a month after dong some more cisplatin and etoposide. I wish you and your mom the best of luck!! We all need hope and it is hard to believe how many different opinions is out there! I think we could go to 20 oncologist and they would all have different things to say... Good luck!! Christy Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 7, 2003 Share Posted September 7, 2003 Kristy, I know of some who are completely happy with their care from the very first place they go, and if that's the case more power to them. I've been to three major and one smaller cancer centers to obtain the care I need. I'll go where ever I have to in order to be the one allowed to choose my own quality of life, and my own chances for survival. I got discouraged along the way...several times. I was in this fight pretty much by myself for the first 3 1/2 years. But it can be done. You're Mother is fortunate to have you and your family as a back up...show the docs that she isn't in this alone. That she has those who will be there to help her recover from the treatments, that there are those who will be checking and double checking that what is reported and what is possible will be accurate and correct and appropriate for YOUR MOTHER and not some other nameless statistic. Learn everything you can about her condition and what the latest news is on treatment, not what was published 5 years ago. Best of luck to you both, From me, Fay, 48 years old and 4 year survivor of Stage IV Poorly to Moderately differentiated Adenocarcinoma with Bronchioloalveolar Features of the lung and hilar nodes, with possible subcarinal nodes as well. (Who also has an alleged benign left adrenal tumor and an alleged benign meningioma) Hold on to the hope. I'm holding on to mine from this moment in this world to the first moment of the next. Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted September 7, 2003 Share Posted September 7, 2003 Kristy, This sounds like a very good plan. I'm glad you found a doctor willing to fight with you and give you hope. It just makes sense to get the blood clots under control, try chemo to shrink the tumors, and proceed with the surgery if possible. I think it's good you got other opinions, but in the end, you have to go with what feels right for you. It's also really important to research on your own and learn as much as you can about what is being done and the options others are trying. I'm glad that you found this site. I wish you all the best. Jenny Quote Link to comment Share on other sites More sharing options...
kzander Posted September 7, 2003 Author Share Posted September 7, 2003 Once again, thank you all for the replies!!! As I said, things have been going a little bit better at the house. My mom had her first Carboplatin/Taxotere chemotherapy treatment on Wed. On Friday things started to taste very salty, and then yesterday, she was extremely nauseated. So nauseated that they finally took her up to the hospital and this is where she remained all night due to dehydration. She is currently on an IV filled with fluids and anti-nauseaus meds. Has anyone out there had that type of chemo treatment? She doesn't have another one for 21 days, but the docs already have a mapped out plan of what she will experience and when she will feel things. Can anyone share their experience? I myself and having my own time coping in Arizona. I really just want to be at home with her, but due to my job, I can't. We are all trying to take things one day at a time, but gosh, this is so hard ........... Does anyone out there take any vitamins/herbs/tea --- other supplements? I have been reading a great book titled, "Cancer Diagnosis - What Next?" It has some great suggestions about supplements. Just wonder what some of you took? Thanks again for the replies -- I'll keep praying for everyone! Quote Link to comment Share on other sites More sharing options...
Fay A. Posted September 7, 2003 Share Posted September 7, 2003 Kristy, I started Taxotere and Carboplatin on Thursday, and I haven't had too many problems yet. I was given extra IV fluid with each of the infusions of the drugs, plus an extra bag of fluid after. I've taken the Compazine as sceduled to combat nausea, and the Ativan at night. I won't say that I feel 'normal', but the nausea is under control. I've been drinking the 10 to 12 glasses of water each day, too., and eating small meals. Hope your Mom is feeling stronger soon. Fay A. PS are they giving her anti nausea meds in her IV before they give the chemo? I think that plays a big part in not being so ill. Quote Link to comment Share on other sites More sharing options...
norme Posted September 7, 2003 Share Posted September 7, 2003 Kristy, My Buddy is on taxotere only and it has not made him feel bad at all. he gets his third treatment this Tuesday...they are spaced every three wks. After this treatment they will stop, take scans to see if it has helped any.If not will try something else i suppose.... Quote Link to comment Share on other sites More sharing options...
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