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Thanks for the info on the support group. I am a part of another established support group. I hope we can get this one established and get many people to join. It helps so much. I have met wonderful people and made some great friends, who we e-mail, and talk on the phone. I will give you links to the support group and other sites where you can read stories about people with meso. You can keep friends and family updated so you can limit phone calls and repeating yourself. It is wonderful. http://www.mesothelioma-care-community.net/thankyou.htm http://www.caringbridge.org/visit/joancastronova http://www.caringbridge.org/visit/judymorales http://www.caringbridge.org/visit/richardelling

All this info is accurate. If you have a specific reason why you think you were affected talk to your doctor to see if you can get first, chest x-rays yearly but more importantly, CAT scans yearly. When caught quickly you can sometimes fight it. If you get a bad cold and can't get rid of it, make sure you see a doctor, and tell them your concern. If you have any unusual chest pain, rib pain, back pain that lasts for a while and you can't get rid of it, go to the doctor. It does take years to incubate and the average age you discover it is 50-60 however there have been babies and teenagers with this disease. Hope this helps. Stephanie P.S. Go to the MARF site and just keep doing research. They have come a long way with research. There isn't a definite way to predict early detection but keep informed to see if they come up with something. I am thirty three and I am at risk. My mom has it and my dad was around it for years. We did his laundry. It is scary!!!

I just wanted to let you know that my mom swishes with peroxide and colase. She says that she swallow a little of it. This last treatment she didn't get any sores at all. The only thing is that she did get a cold sore but the doctor said that could be a viral thing, not from the chemo. Will, I am adding you to my prayer list. Stephanie

I'm glad to hear the good news!!! Good luck, Stephanie

My mom had this problem when she was first diagnosed. Her tumor was strangling her esophagus and she would choke on phlem, especially when she drank water. I think some of it is the chemo. I'm not really sure what it means but at least it is coming up. Good luck, Stephanie

Congratulation!!! enjoy Stephanie

My mom had alimta and didn't have a hard time with it but that was also after having alimta/cisplatin. The cisplatin was hard on her so the alimta wasn't that bad. She was just tired.

I have added you and your family to my prayer list. God Bless, Stephanie

A PET scan shows any metabolized live cancer cells. It is one of the best ways to measure the cancer. My mom has had CAT scans that looked okay and then the PET scan showed what was really going on. You need to push. The second thing is any good doctor wants and encourages you to get a second opinion. Sometimes with doctors you have to be persistant. If they still refuse you have a right to all of your medical charts. You can contact medical records and get a copy of everything, which you should regardless of anything. I get a copy of everything. Then you can send this copy to the doctor(s)that you want to. They make disks now of all x-rays. Have them put everything with pictures on a disc so you can send those also. Make sure you get two copies of everything so you have your own copies. On more than one occasion I have had to take matters in my own hands. Doctors sometimes refuse to listen to patients because of self diagnosing on the internet. You know your body the best and you need to push. I had a problem last spring, no where near the seriousness as this,and no doctor would listen to me. It came to be three months later that I could not walk and persisted that my doctor see me. I only got in because someone cancelled. Come to find out I had a ruptured disc that fractured a vertebrae that pressed on my spinal cord and bruised it. The doctors tell me if I did not persist and come in that day I would have been paralyzed. Fight for yourself. Good luck, I will be praying for you!! Stephanie

My mom doesn't have the same cancer but she was on cisplatin,alimta for eight treatments and her cancer went away. After the eight treatments she went to maintenance, alimpta for another six treatments until it came back. My mom actually handled the alimpta well. She was tired but I just don't think there is much they can do for fatigue. They have come a long way but unfortunately it is one of the major side effects. My mom is now on doxil. She has pleural mesothelioma. She then went on Gemzar which she hated but that was every week where the alimta was 3 weeks off, one week on. The gemzar worked for about a month and a half and now she is on doxil which is the same as alimta. The doxil really makes her exhausted. I think the doxil has been the worst for her regarding fatigue. My mom worked up until her sixth treatment with alimta, cisplatin. I hope she feels better. Stephanie

I have a friends daughter that has one and the tube actually comes off and there is just a little port. You just screw the tube in when it is time to eat. My mom had a feeding tube last year with the tube attached and wasn't thrilled about it. She had discomfort from the tube rubbing so maybe if they can put the other one in it will be good. You should really have a feeding tube. You need the weight gain to help you fight and deal with chemo. My mom had hers in for about a year because she couldn't swallow. She has mesothelioma and the tumor had strangled her esophagus. She had it out in December and had a burning party at Christmas Eve. Good luck. Stephanie

When my mom was diagnosed I took charge and got all of her medical records, did research. I also talked to the doctors separately and just asked him, telling him that I wasn't holding him to anything. When asked about decisions I turn it around and ask them what they would do if it was their mother. What type of cancer is it? Is it mesothelioma? If it is you need to go to a meso specialist. These doctors deal with this much more than any oncologist being that meso. is rare. Good luck.

My mom was on the alimta that really helped her. The side effects were not horrible. She is on the Gemzar now which she is not tolerating very much. My mom just got scans back and I am confused. I just read in your history that you had the same thing happen so maybe you can help. My mom's CAT scan came back and it showed that everything stayed the same or slightly grew and she has two more enlarged lymph nodes but the PET scan looks great. We go to the doctor tomorrow. If it is bad news I don't know if she will continue with chemo. Hopefully she will because I guess it is working if the PET scan looks good.

scans are done and usually as long as it is working they will keep him on the alimta because it isn't that bad. If it is not working they will go on to a different chemo. Hopefully the chemo has worked well enough that he can have surgery. This is very important: You have to find a doctor that specializes in mesothelioma. Regular oncologists don't deal with meso all of the time because it is rare. We deal with our oncologist here but all orders come from Dana Farber in Boston. There have been so many times that regular oncologists have given late stages and then when seen by a meso specialist it isn't that bad and surgery can be done. Of course surgery is not a definite cure. It can help or it can make it worse so there are many hard decisions to make. We see one of the head surgeons at Brigham and Women's who works with Dr. David Sugarbaker who is the best in world. He has designed special tools to do the exptrapleuralectomy that is done to remove the lung, lining, lining of heart and some of diagphram. Then a new heart lining and diagphram are made with gortex. I actually watched the surgery live on the Brigham and womans web page. It was amazing. Good luck. I am praying for you.

My mom was diagnosed Nov. 2005. She was in stage IIIb and was given 6-12 months to live. My mom has been healthy her whole life so this was just such a shock. They had to remove 7 liters of fluid. You only have 5 liters of blood. She was in the hospital for two weeks. We then went to Boston, Dana Farber to meet with oncologists and surgeons. My mom cannot have surgery because her meso is rare. It actually wrapped around her esophagus and went behind her lung and is very close to the heart. She had to have a feeding tube last year because her esophagus was only the size of a pencil is a spot. My mom had 8 rounds of cisplatin and alimta. The cisplatin was the hard part. She got nuerapaty really bad. Last May they didn't think there was anymore that they could do and then in July her cancer was deemed inactive!!! She then just had alimta. She just had fatigue and the neurapathy. The side effects really weren't that bad. In Jan of this year we found out that the cells were active and she is now on Gemzar. She is having a hard time with the gemzar. She is tired. She had to have a port put in two weeks ago because she had no veins left, which is what the gemzar does. She is having such a hard time mentally with the gemzar. She has been talking about giving up the chemo. I think she was just going through a down stage. She had her two shots, nulesta and something elso which boosts blood cells. She feels human again when she has these every three weeks. She has scans this week and we will know if it is working in two weeks. If it is not working I don't think she will continue. This is a tough tough disease. There is no cure but with surgery you can get a chance. On my other meso support site a friend's husband was diagnosed almost three years ago and is doing well. He had to have radiation last summer but he just went back and it is still inactive. The other web site is www.mesothelioma-care-community.net. Go to our stories after registring. I have been looking for people on this web page dealing with meso and haven't been able to find anyone. It will be nice to be able to talk. My e-mail address is Farina01238@verizon.net. Feel free to contact me. I in no way have the answers but I have done hours and hours of research on line and in the hospital libraries. I make sure I ask any question I don't understand and make sure I understand everything. I have a folder with tons of notes and I get all medical records so we have out own copies. I am praying for you. Love, STeph