paul verdon

I can't believe I am writing this so soon but my sweet sweet Michael passed away on 5-19-09. He had a rough year since January with two emergency surgeries and three different radiation treatments. He also had chemo but couldn't handle the full dosage of the drug. I'm heart broken, and this illness is unfair and cruel.

Hi everyone Michael had pet/ct scans last week and we met with the onc. this morning. After 7 months on alimta and avastin the tumors and lymph nodes have increase a little. They went from 18mmx16mm to 20mmx18mm (approx). This was enough that the doctor said lets try something new. So today Michael started weekly treatments of Navelbine with Zomita. Michael is also getting a port next week. So once again I come looking for experience out there with this drug in hope of keeping hope alive. Thanks Paul

Congrats. We all know how good we feel when things are stable!! Enjoy your vacation. Paul

David You have really had a ride on the health journey. We felt so lucky not to have been diagnosed with HIV. We did have a scare with an x of mine who passed away in 84 a year after Michael and I meet. We thought how lucky we survived HIV, and then in our wonderful life together Michael gets lung cancer. It's been hard on me probably in some ways more than Michael. Michaels bones ache more than anything else but he only takes Aleve twice a day for the pain. When he gets his chemo treatments he feels aching all over but then it goes away or lessens. The Zometia according to the ONC causes the pain while it is working. He's feeling much better already from the radiation. My concern was the doctor said it usually works for a year which once again upset me. I have learned from this site however it can work for much longer and every one is different. Michael continues to work from project to project this last year. He is a film sound editor and works independently so when needed he stays at home. We do live for today and plan ahead for trips etc. We have wonderful friends and family and get a lot of support. Thanks for responding and lets keep in touch. Paul

Hi David I read your message and felt encouraged for my partner of 25 years (see his history below). Your sitution is very similar to Michaels becasue of the location of the cancer, and Michael is also on Alimta, Vastin and Zometia.He is responding well to this treatment and hasn't had much in side effects except a little tired. He did however have to start radiation last week for 10 treatments to his pelvic area. It's been one year for him and your back ground gives us much hope for many more years to come. Thanks for posting to this site. Paul

Hi Susan Michael is going through radiation on his hip also and has had 6 of 10 treatments with no side effects. Your discrition of your Mom sounds like something else is going on with the hip. Paul

I was going to send a PM to all of you but being at work it's to hard doing my personal stuff! I can't thank all of you enough for the information and prayers. You have given me the feed back I wanted from your own experience. Thank you. Michael felt better this morning after one treatment. I'm not sure if this was wishful thinking or not but we are looking forward to him feeling normal again. We happen to live in a two story house and a garage on a lower level so our home in not suitable for leg and hip problems. Thanks again to you all. Paul

After having such a good PET/CT Scan last week and reporting of the good shrinkage of the lung tumor and scaring of bone mets we were confronted with disappointment. Michael had pain in his thigh that moved to his hip over the last month or so. We thought it was a pinched nerve or muscle ace. Well it was the pelvic bone mets on the socket rubbing against the ball joint of the thigh. So we saw the radiologist and he started Michael on 10 treatments of radiation. He stated this would probably be good for a year which shocked me that it's not longer. I guess I'm writing to ask for feed back from experience here. It's hard accepting good news when it feels like getting radiation is bad news. And only one year! Paul

Hi Everyone We had the results of Michaels pet/ct scans this morning after 6 treatments of Alimta, and the last three treatments had Avastin added. This is such good news for us on his one year living with LC and here is what was the scans showed. The original lung tumor is now smaller than when it was found one year ago. The bone metastases are stable. The bad lymph node shrunk a little. The left flank tumor shrunk a little. Basically the CT conclusion was decreasing lung tumor, stable bone metastases in the chest, abdomen and pelvis, and stable left subcutaneous metastases. The PET scan still shows activity on the right shoulder blade, but the CT cannot even measure it and this is a stable condition from the last scan. There is partial overall improvement in activity, with the exception of the spinal mets, which are stable, and a slight increase in one spot. As you can see we are so greatful for such good results for a stage IV condition! Paul

Johnny As all these wonderful friends on this site have said there is hope. My partner of 25 years was dx July 07 with stage 4. There is a tumor on his lung and he has bone mets. We thought it was over last year. We have since found out that the doctors try to treat even stage 4 as a cronic problem. They try different types of chemo until they hit the right one. There are also clinical trials out there, so please get your mother to the right doctor. We interviewed 3. On the coming out issue. You should play that by ear. She has a lot on her plate now. You may find that as the treatments work and everyone's emotions settle down you may have the chance to bring it up. Try talking about a gay friend and see how she reacts. She may even know but hasn't talked about it with you(?). Paul

Hi All, Michael has his PET Scans results and we meet with Dr. Rosen yesterday.I know this sounds confusing, it was to us also. In short, the main lung tumor and the spinal lesions remain unchanged (yah)!! What pushes Michael close to the fence is a lymph node which has grown, and a new area of activity on his left shoulder blade. The new area glowed with activity on the PET Scan, but was not big enough to be pictured on the CT scan, so I guess it's really new. Dr. Rosen said it's hard to say the drug is working when we're still experiencing growth, but maybe the drug needs a little more time. Therefore we're proceeding with three more treatments of Alimta with the drug Avastin added back in. This is the drug he took initially which inhibits new blood vessel growth toward tumors. Side effects are few. We feel this is worthy of the good news topic. Any one with similar experience please let us know the good news. Paul

I want to thank all of you for the info for Michael. We started a bad week last week because of the growth in tumors with Tarciva. I have been reading everyones back ground and realize that some chemo treatments don't work for all but there are other treatments to try. A step at a time and by the way Michael looks and feels good so that's a good start. Again thanks everyone! Paul

Michael had disapointing news with the Tarciva considering he was covered in a rash all over his torso. We had the visit with the oncologist this morning to review the results of the latest scans last Friday and the tumor has grown a little. One of the spinal lesions is slightly bigger also, but everything else is the same or even a bit smaller. This means the Tarceva pill did not work and we now proceed to step three of treatments with a chemo drug called Alimta. It's administered intravenously every three weeks for six session with scans after three sessions to see how it's going. Anybody got incouraging news for us on this disapointing day? Any one on Alimta? Thanks all of you for all your support. It was a blow to me today maybe more so than Michael. Paul

Leslie As said above get a second or third opinion. We got three opinions for Michael. We are in LA and have great doctors for you here if you want a referral and are in So. Cal. Paul

Dear Corinne: Last June a chest X-ray discovered a 20 mm. tumour in my left lung and I felt I'd been handed a death sentence also, but this was not the case. I found a great oncologist here in Los Angeles at Premiere Oncology and have now completed six sessions of chemo therapy with Avastin and Zometa added in. Ignore all the statistics about life expectancy because there are new drugs which have only just become available and we're creating new statistics now. All this state of the art medicine resulted in 10 percent shrinkage of the lung tumor after three chemos, and stability after the sixth. Now I'm on a maintainance program of Tarceva which is a cancer pill. Hopefully it will provide years of stability and relatively normal life. The next few months will be different for you and don't be afraid to ask friends and family for help - and don't be afraid to let them help you. You'll be amazed at the support that's out there. Hang in there and feel free to ask any questions. You're not alone. Michael

Corrine This site has been helpfull to Michael (in white) and me. I am the caregiver and have received valuable information from this great group of friends that care and understand. Michael is also Canadian and we were in Edmonton; Red Deer summer 06. Michael's family is in Ontario. This is a scary dx for you, and all of us but there is hope and this group will help you. Paul

Thanks Ralph.

Thanks for all the helpfull hints. Michael is going to go off the Tarceva today (12-19-07)for a couple of days as recommended by the doctor and a number of you. We want this to work on the cancer and not reduce the dosage so we will go a day at a time. Thanks again, Paul

Thanks for the input. I guess we are adjusting to "it is what it is" because there aren't any choices. This web site really helps us hear from the real world experiences like your's and lets us make informed decisions. Thanks.

Thanks Ned for your last recommendation. Michael's Doctor also said that stopping it for a few days may help get rid of some of the rash. We kind of want to keep the Tarceva going for health reasons but I think we will call the doctor Monday. Thanks, Paul.

You have all really given us some guidance to follow, and check into further. Thank you so much. Longevity is more important than any thing, and we will look at options mentioned here to make michael more willing to live with the rash rather than reduce the dose. Thanks.

Thanks for the info. These are the kind of things we need to hear, good or bad. At least we can make informed decisions.

Michael has gotten a very bad rash from the 150mg of Tarceva which he has been taking since 11/29. The doctor first gave him "Clindamycin1%" generic for Cleocin. This made it look worse so then he was given 100 mg Doxycycl HYC 2 times a day. He has been taking the pills since 12/10. It looks just as bad and he has red splotches all over. My question is has any one got suggestions? Any creams or other antibiotics working out there? The doctor will most likely reduce the dosage of Traceva but we understand there is a correlation between the rash and the effectiveness of the drug.

Thank you for posting this. My partner was dx in June 07 stage 4 and of course we have been horrified since. He has responded well to the taxol and carbo and is over the 6 treatments. He is also on Zometa and Avastin. He just started Tarceva 150mg. We hoping you can lead the way for setting new records for survival that exceed the exising term and give us all hope.

We just joined this great group for support. The pain you expressed is the same I had when Michael was diagnoised with stage 4 LC, and I still feel today. Our life as of June 07 seemed to come to an end 30 years before I ever thought it would. Keep him eating I'm sure this has helped Michael survive the 6 heavy chemo treatments. We get his PET scan read tomorrow. We'll send a prayer for you both. Paul and Michael