Van55 Posted March 31, 2010 Posted March 31, 2010 I hope this is the right place to start this thread. I already introduced myself. I had a left malignant pleural effusion DX. Saw the thoracic surgeon today who said the tumor is non-resectable. I will undergo a pleurodesis next week in hopes of permanently removing the fluid and making it easier to breathe. I see the oncologist tomorrow regarding chemotherapy. Quote
Patti B Posted March 31, 2010 Posted March 31, 2010 Van- Good luck with the pleurodesis - I have never had one but many here have. After you meet with your oncologist, let us know what your plan of action is - maybe we can give you some pointers on side-effects of certain chemos. Hugs - Patti B. Quote
RandyW Posted March 31, 2010 Posted March 31, 2010 when the fluid is removed you wil feel like a new person compared to the before effects!! Quote
jaminkw Posted March 31, 2010 Posted March 31, 2010 Don't know if the procedure I had is what you are scheduled for because I don't remember what it was called. But I do remember that when they drained the fluid off, that was the end to the excruciating pain in the left side of my chest. I wasn't a candidate for surgery either because the malignancy was in the chest wall with no tumor. I'm into my third year and second remission so they are controlling my IIIB dx very well with chemo. Judy Quote
jstdzy Posted April 1, 2010 Posted April 1, 2010 My Mom had a pleurodesis, that's were they put talc between the lung and the chest wall right? She stopped building up fluid right then. Worked great for her. Thanks for posting, let us know what chemo they put you on! Dana Quote
recce101 Posted April 1, 2010 Posted April 1, 2010 Hi again, Van. Getting rid of that pleural effusion will be a welcome event, and you'll feel a lot better afterward. My lung was so messed up from a pleural effusion (which had apparently been there undetected for months) that part of the lung couldn't be reinflated enough for the pleurodesis to stick, but with chemo it gradually resolved on its own and the fluid never returned. Aloha, Ned Quote
Van55 Posted April 1, 2010 Author Posted April 1, 2010 Saw the oncologist today. He's sending the cancer cells from the thoracentesis to a lab to determine their DNA. Will await that result before a course of treatment is prescribed. Prognosis is pretty gloomy at this point unless a catch a few breaks with regard to mutant cancer cells. Quote
jstdzy Posted April 1, 2010 Posted April 1, 2010 Van, You can just never tell how this "cancer" and "treatment" stuff will turn out. You might just be flat amazed! Sending prayers anyway! Dana Quote
Van55 Posted April 14, 2010 Author Posted April 14, 2010 My pleurodesis surgery was a week ago today. 6.2 liters of fluid were drained. My lung blew a leak on re-inflation that had to be patched. 1 hour procedure turned to 5. I am still hospitalized with chest tubes in. Air leak and fluid output continue to be watched conservatively with hope that they will take care of themselves naturally. I feel excellent. Appetite is back. Vitals are perfect. Tons of energy. Would like to get this part behind me and get on the attack of the cancer. Quote
Joppette Posted April 15, 2010 Posted April 15, 2010 I wish you continued success and a good outcome. Glad to read you are feeling great! Judy in MI Quote
jaminkw Posted April 15, 2010 Posted April 15, 2010 Sorry things are moving forward slower than anticipated and that you're still in the hospital. But am really happy to hear you are feeling well and strong. My experience tells me that is a good sign. Many of us don't have symptoms or think we don't before dx, but I do know that since then feeling really well is usually a sign of positively attacking the cancer. Keep us posted. Judy in KW Quote
eric byrne Posted April 15, 2010 Posted April 15, 2010 Hi Van, You have been through the wars,hopefully the worst is now in the past,you sound great despite your problems,I do hope your test results go well for you,please keep us up to date on your progress-all the very best. Quote
recce101 Posted April 15, 2010 Posted April 15, 2010 Wow, 6.2 liters is a LOT of fluid! It's no wonder you're feeling better without it. Like some others have said, you might be amazed at how well you do on chemo. Feeling strong when starting chemo is a terrific asset. Keep us posted! Ned Quote
Bud Baker Posted April 15, 2010 Posted April 15, 2010 Van, Glad to read that you're feeling better. That's always a good sign. Here's wishing you great success with your chemo. Quote
jstdzy Posted April 15, 2010 Posted April 15, 2010 Van, Glad you are taking all this so well. Get well soon so you can go kick some cancer in the can! Dana Quote
Van55 Posted May 3, 2010 Author Posted May 3, 2010 I was finally discharged from the hospital 12 days post-surgery. I have continued to feel better as the surgical wounds are healing, but the pain at the incision sites has been slow to go away. Tomorrow is my first visit with the oncologist since my discharge. Presumably he will have the lab analysis of my cancer cells, plus the MRI of my brain and the P.E.T. scan. I am hopeful that the cancer is confined to the lung area and that chemotherapy will make me one of the lucky long-term survivors. A Tarceva regimen would be welcome, but he said it's a bit of a long-short. Thanks for all the good wishes. Keep me in your prayers, please. Quote
Joppette Posted May 3, 2010 Posted May 3, 2010 Hi Van, glad to hear you are out! prayers coming your way for sure! Wishing you a good meeting with Onc. Judy in MI Quote
Van55 Posted May 4, 2010 Author Posted May 4, 2010 Well, the tests show that the cancer has not apparently spread outside the lung cavity, which is good news. The less good news is that I don't show the EGFR genetic marker that would suggest Tarceva as the treatment of choice. I will probably be sent to the Duke Cancer center for further evaluation and a treatment recommendation. Quote
RandyW Posted May 4, 2010 Posted May 4, 2010 Duke is undoubtedly a top notch facility for cancer care!!!!Keep fighting !! Quote
Van55 Posted May 12, 2010 Author Posted May 12, 2010 Wow. What to do. Duke is in Phase II of a study designed to predict which cancers are resistent to Platinum chemotherapy and which are not, and to tailor the chemo regimen accordingly. To participate in the study I would need to proved a fresh tissue sample for biopsy and RNA analysis. If the analysis suggests that my cancer is not resistent, I would be given 4-6 cycles of Cisplatin plus pemetrexed (alimta?). If the analysis suggests that the cancer is platinum resistent, I would be given 4-6 cycles of Pemetrexed plus Gemcitabine. Chemo would be adminstered at Duke (3 1/2 hours each way) every three weeks. Chemo probably won't start until early to mid-June. Duke is out of network for my insurance provider, and I don't know whether insurance will cover all or any part of the costs of my participation in the study. Local oncologist (who referred me to Duke and trained there) would probably put me on four cycles of Carboplatin plus Taxol plus Avastin followed by maintenance doses of Alimta and Avastin. Duke doesn't use Avastin in its study. Local treadment would probably start as early as next week. Duke estimates that about 50% of people with non-squamous adenocarcenoma have a platinum resistant one. Quote
recce101 Posted May 12, 2010 Posted May 12, 2010 Duke is out of network for my insurance provider, and I don't know whether insurance will cover all or any part of the costs of my participation in the study. I believe the costs of a Phase II study would be borne by its sponsor, and you or your insurance would be responsible only for any tests/procedures you would need whether you're in the study or not. I haven't participated in a cancer clinical trial, so others who have, please jump in to verify or correct what I've said... All of the treatment options you listed have been proven effective for adenocarcinoma. From my experience, I would say that Alimta (pemetrexed) has far fewer side effects than Taxol. It wasn't available to me when I started treatment in 2006, though I did receive it later. It caused some fatigue and a moderate amount of swelling here and there, but no adverse effects on my taste or appetite — a real blessing compared to Taxol. Ned Quote
Van55 Posted May 18, 2010 Author Posted May 18, 2010 It turns out that I have the ALK genetic marker. People who have this marker are responding with amazing success to an "experimental" drug (pill) made by Pfizer. Unfortunately, the drug hasn't been approved by the FDA as yet and there are presently no clinical trials for which I am eligible. I have decided to participate in a study being done by US Oncology. I will be assigned to receive either: (1) Carboplatin + Alimta + Avastin followed by maintenance on Alimta and Avastin; or (2) Carboplatin + Taxol + Avastin followed by maintenance on Avasitin. Hopefully whichever therapy I am assigned to will work on me, but I have the possibility of the Pfizer drug becoming available to me either way. Quote
RandyW Posted May 18, 2010 Posted May 18, 2010 Thank you for being a pioneer in Lung cancer research!!! Quote
Van55 Posted May 25, 2010 Author Posted May 25, 2010 The battle against my cancer begins in earnest tomorrow morning. I have been assigned to the half of the clical trial group that will receive" Carboplatin Pemetrexed (Alimta) Bevacizumab (Avastin) I will four three week cycles of this cocktail followed by "maintenance" dose of Alimta and Avastin. This is the experimental treatment being compared in the study vs. the state of care treatment. If anyone has practical thoughts on the side effects of these chemicals and what to do to minimize them, I would appreciate your expressing them here. Thanks. Quote
Van55 Posted June 8, 2010 Author Posted June 8, 2010 Not that anyone has asked, but I am now nearly two weeks post my first chemo infusion. I have experienced no nausea, vomiting or other miserable side effects (knock wood). I do experience some fatigue, but I suspect that's almost impossible to avoid, given the drop in the red cell count. Last week's blood tests were within expected limits. I'm encouraged, so far. Quote
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