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Van55

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Posts posted by Van55

  1. Did you get a port or are you veining it?

    Vein so far. Oncologist said that was fine so long as they have no trouble finding a vein.

    Do what you can to get some light exercise - it helps relieve the fatigue. I can't imagine why, but it appears to do study after study. Me, I preferred ice cream.

    I try to walk a mile a day. I think I should increase that. The surgeon has released me to play tennis as of June 30, and I will try that as well. I was playing 3 times a week or more before being diagnosed. Little did I know that I was playing the last 6-8 weeks with the pleural effusion having practically collapsed my left lung. Good excuse for losing -- now that I know about it!

  2. 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.

  3. The Pfizer drug known as PF 02341066 now has the trade name Crizotinib.

    I have the ALK genetic marker but am not yet eligible for the trial because I haven't completed a round of chemotherapy.

    I hope you are admitted to the trial and have the kind of results that I have read about anecdotally and scientifically. Apparently the inhibitor has great promise for those who are ALK positive.

    My prayers go out.

  4. 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.

  5. 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.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

  10. 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.

  11. 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.

  12. I seem to get a bronchial cough every winter. This winter was no exception. I thought it would clear up on its own, but finally went to the doctor early this month. Advair was prescribed and I was sent for a precautionary xray.

    Xray was mildly suspicious, I was told, so I was sent for a CT Scan on March 10.

    CT Scan was abnormal and I was sent to a pulmonary specialist. He showed me the films and my left lung was virtually collapsed and casing filled with fluid. Thoracentesis was done the next day, March 18.

    Yesterday I was advised that the fluid contained cancer cells consistent with primary lung tumor. The repeat CT Scan showed the fluid had built up again, and no tumor can be visualized as a result.

    Next appointments are with an oncologist (April 1) and a thoracic surgeon (no date set).

    Needless to say, I am alarmed. No cancer in my family ever.

    I've looked at some of the great survivor stories on these pages, and I hope someday to tell another of them.

    I'm 63 years old and communicated with my 25 and 22 year old kids today. I had to comfort them and insist that we all keep a positive outlook.

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