yirol Posted May 27, 2007 Share Posted May 27, 2007 These are questions we asked my father's Oncologist before his next appointment. We wanted to ensure there were no delays when he got to the Cancer Center for follow–up treatment/chemotherapy. Our questions are labelled "Us." Doctor's responses are in after "Dr.," and typed by us, verbatim. Our follow-up comments come after "US 2". 1. "Us": If Tarceva is shown to be failing, can Dad start chemotherapy immediately, i.e., on the day of discovery? Does the x-ray taken on Monday, 14 May 07, indicate in any way that the Tarceva hasn’t been effective? Can we discern from them that the tumors are growing? "Dr.": Don’t have any xray.... Based on May 18th xray .... no evidence of shrinkage BUT no growth either. Called stable disease. "Us2": Hospitals are 5 minutes away from each other. 5 minutes! I can and have walked information over! Since the original dx was not found through standard x-rays (in fact x-rays FAILED to make the discovery), how can we expect that "growth" or "stability" will be found through x-rays? -- 2. "Us": Dr. originally mentioned starting the single–agent Vinorelbine (or Navelbine) if the Tarceva is not working for Dad. We've heard Vinorelbine, in combination with Cisplatin, appears to provide a "survivor's edge." Why is there no plan to try the Vinorelbine–Cisplatin combination? "Dr": Combination chemotherapy has high likelihood of mortality (death) in someone as unwell as your father (performance status 3 if you wish to speak with other oncologists). "Us2": Dr. currently (as of today) indicates that, other than Tarceva, there isn't a next line of treatment "in the wings." Dad told repeatedly to accept "palliative care" in a "palliative bed" in the hospital, or go home with OHIP oxygen and a 2-days-a-week nurse. Even getting Tarceva was a struggle. WHY? Performance status "3"?! No one ever mentioned this ruler before. What goes and went into this ruler? How can we get Dad up to a "2"? No prior news and no prior communication about this is unethical. Not sure I believe this anyway. Dad's supposed "blood clots" that were never confirmed after a long flight went into an early equation that said he only had "1% chance" of responding to treatment.... as did his lack of treatment for weeks which would cause anyone to spiral. Cancer, Stage IV has a high-likelihood of mortality. Why not even DISCUSS the options and risks? -- 3. "Us": Will Dad be taking Neopogen, or anything else, to keep his white blood cell counts (WBC) up? "Dr.": No neupogen unless needed. -- 4. "Us": What about Avastin in addition to the Tarceva as a treatment option? "Dr.": No avastin – experimental at present. "Us2": From Day 1, Dr. and hospital NEVER mention clinical trials in conjunction with the flood of pressure to go home or accept palliative. -- 5. "Us": Since we expect Dad to start "aggressive chemotherapy" should Tarceva fail, what medications should he be avoiding now? "Dr.": No medications to avoid. "Us2": Hmmmmmm.... -- 6. "Us": There's discussion that "proton pump inhibitors (PPIs)" dampen the absorption of Tarceva. Since Dad is taking 30mg of Prevacid (a PPI) daily, should we be worried? "Dr": We can reassess prevacid if he progresses. Unlikely a large impact on benefit. "Us2": Hmmmmm... -- 7. "Us": The Tarceva website says: "When taking Tarceva with some drugs, such as blood thinners, e.g., Coumadin, there may be an increased risk of bleeding." Since Dad is on 5000 I.U. Heparin daily, should we be concerned? "Dr.": No increased risk with heparin. "Us2": No plan for Avastin? Plus, the question was about Coumadin, too, (blood thinners in general) which the docs have given Dad on and off since dx. -- 8. "Us:" When are we going to have a consistent diagnosis for the other "hot spots" on Dad's ribs, spine, hip, knee and liver? The two hospitals have varied in their discussions of these spots. "Dr.": Spots appear to be cancer. Already stage 4 thus I don’t think we need to investigate further but we do need to follow these lesions. (CT, bone scan next month). "Us2": Really no treatment now??? -- 9. "Us": When are these spots going to be treated? How are they going to be treated? Will radiation be used? "Dr": Radiation if pain. "Us2": Not what Dr. said on first meeting. On first meeting, she said, "there are a few spots, but nothing that a little radiation couldn't zap." No joke. 10. "Us": We’d like to know about these other chemotherapies: Carboplatin Taxotere Etoposide Gemzar Alimtas Avastin Cisplatin Taxol "Dr.": Other chemotherapies likely too toxic except Gemzaar. Vinorelbine has better evidence of survival benefit. "Us2": If Dad regains his strength and approves of it, will you commit to this treatment? -- 11. "Us": Was it important that the pleural effusion was checked for cancer (when they drained Dad's lungs)? SMH didn't check the fluid for cancer, only, it seems, pneumonia. Was this a mistake? "Dr." Not mistake not to tap effusion. -- 12. "Us": There are drugs that are being developed called irreversible EGFR inhibitors. They are supposed to work once Tarceva stops being effective. One that is in trials is call HKI–272. We’d like to know more about HKI–272. "Dr." HKI272 does not work. 13. "Us": Is Dad eligible for Radio Frequency Ablation (RFA)? Are his tumors "good candidates" for "getting cooked?" It is an avenue we'd like to explore seriously. If Dad is currently too weak for traditional chemo and not eligible for traditional radiation, can we pursue RFA now until he regains his strength? Does the hospital have any radiologists that specialize in this technique? If not, can they refer us to a place either in Canada or in the U.S.? (Even if OHIP doesn't cover the procedure, we'd like to know all of our options.) "Dr.": No RFA – won’t help. "Us2": An radiologist hasn't even examined the images for benefits of RFA! Quote Link to comment Share on other sites More sharing options...
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