sbf815

I am so happy for you. What a relief. It feels so good when you get that news!!! Stephanie

Just wanted to let you know that I am thinking of your family.

Lorrie, Thank you so much for answering my question. I know how the PET scan works with showing the cancer. I had just never heard about the SUV#. I wonder why they don't tell you that. The other thing I was reading yesterday while doing some research is that the PET scan will show changes before a chest or CAT scan will so why is it that we are not doing the PET scans instead of the chest or CAT scans, besides money. I will definitely ask this question next doctor I see. Just thought I would update you all on that info. Stephanie

My mom has had PET scans and I have never heard anything about a SUV#. What is it? Does it only pertain to the stomach? I want to put a picture of my mom by my entries and write about her past. I'm not sure how to do that. I am glad that you were persistant and got the answers that you needed. Stephanie

Ask your doctor about neurontin. It helps with pain in the nerves. Stephanie

Is there anyone on this site who suffers from mesothelioma? I talked to my mom's surgeon and she said she probably is not eligible for the EPP. That is only to extend life and help with symptoms. My mom's quality of life is good right now. I guess we won't know anything until next Friday. I'm jumping the gun but I've been waiting for this to come back. Everyone knows how waiting is. You think you are just going to have an answer but cancer and death are unpredictable. I am praying for you all. This is just so hard to go through. There are so many up and downs. Stephanie

It is your right to get all the treatment that you deserve. You have to be very persistant with doctors. The have the whole ego complex. Don't give up. Tell them that if they don't do the CAT scan and it ends up showing something that they will have a lawsuit. I'm sorry that the doctors are doing this to you. You know your body and your husbands and you are entitled to answers. The more persistant that you are the better. They will get sick of listening to you and do the scan. How do I put in pictures and history of illness? Stephanie

Thank you, you are all in my prayers also.

My mom was diagnosed with mesothelioma in Nov. 2005. The meso was rarer than rare. It wrapped around her esophagus and she had to have a feeding tube in in Jan2006. September cancer was deemed inactive. In October she had her feeding tube out and she had a burning party on Christmas eve with all of her family. She had a CAT scan last week and chemo this week. The oncologist here thinks that there is thickening around the lung again. She gets a PET scan next week and if it is positive then we are off to Boston again. The options are more toxic chemo, radiation, and the EPP(extrapleuralpnuemonectomy) the left lung, lining are removed along with lining of heart and some of diaphram. The lining is then replaced with a gortex lining. At one time I thought the operation was the answer but it seems like lately I have heard of so many people having the EPP, having great prognosis and within months they found a lump in their stomach where the meso. traveled and within months they died. She was on alimta/cisplatin. She had 8 rounds of cisplatin and then got neurapathy. She has still just had alimta. I feel so bad for her. Does anyone have any advise?

If she is in pain or really sick call your doctor immediately. There are so many medications to help with these side effects. Chemo is so different than it used to be. They have so many different meds to counteract these symptoms. Is the other chemo alimta? My mom didn't have any pain but definitely call her doctor. Stephanie

I will pray for you and your family. Good luck with everything. Stephanie

We went down to Boston and her oncologist there said that it is possible in some cases. She started getting nuerapathy from cisplatin/alimta. Her oncologist is suggesting that we now do the alimta every 6 weeks instead of every 3. My mom's cancer is inactive right now so they can do that. If it doesn't get any better then they are going to give her a break for awhile, which is very scary. Thanks for all of the advice!! My mom does take folic acid everyday and every threee weeks gets her B-6, or 12 shot. My mom also takes many vitamins. Talk to everyone soon. Stephanie

My mom has had 8 rounds of cisplatin/ alimta. This caused her neurapthy which she is happy to have instead of the alternative. She is now on her 4th or 5th treatment of alimta. Her neurapathy is getting worse. We asked her doctor here and he said that the alimta should not cause neurapathy. I have gone on the web sights and seen other people's stories and have found that yes, it can cause neurapathy. I told him this and he strongly disagreed. We are going to Boston tomorrow so they will know better but I just wanted to see if anyone else had the same experience. My mom has stage IIIb mesothelioma but a year later has inactive cancer cells. The chemo's worked so well. I am trying to figure out how to do a profile but haven't had much time. Stephanie

My mom has neurapathy in her hands and feet. The oncologists say she got it from cisplatin. She was on cisplatin/alimta. She has been off of cisplatin for a while and now is on just alimta. The doctor's say that the alimta does not cause neurapathy, even though it is getting worse. I have done research and it does show that alimta does cause neurapathy. My mom has pleural mesothelioma and was diagnosed last November with stage IIIb. They gave her 6-12. My mom responded so well to the cisplatin/alimta that her cancer is inactive. Her cells are not dividing. The meso. traveled outside the pleura and wrapped itself around her esophagus. She had to have a feeding tube in. My mom is just such a strong person. The alimta is making the neurapathy worse but she doesn't have much of a choice. I guess it is something she has to deal with but I don't know if it will be repairable because she has to keep having the treatment.