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...
RandyW Posted May 27, 2007 Share Posted May 27, 2007 http://www.dfhcc.harvard.edu/news/news- ... e/122/322/ HKI 272 does not work Uh What????? click above link Avastin is experimental??? Uh What?? http://www.fda.gov/bbs/topics/NEWS/2006/NEW01488.html Thats all i got for Now!!! Quote Link to comment Share on other sites More sharing options...
wiesia Posted May 28, 2007 Share Posted May 28, 2007 Some remarks, My father was also performance status 3 at some point and the doctor was afraid to give him chemo. So he just gave him Avastin (no side effects from that one at all, so you should seriously look into it; it worked on the primary tumor of my father) and waited a week. After a week my father's condition being stable, he got Navelbine. No side effects from that one either. Btw, you can check on the web about the grading for performance status; it will give you an idea whether your father is indeed 3 or not. RFA, cyberknife etc are not generally used in stage IV. The reasoning is that with an agressive cancer like lung cancer it is most important to treat the disease systemically. Again, I would look more carefully into adding Avastin. Quote Link to comment Share on other sites More sharing options...
beat it Posted May 28, 2007 Share Posted May 28, 2007 Second, Third and Fouth opinions!!!!!!! Remeber the Oncologist works for YOU. If he or she is not willing to help and work with you and you feel this frustrated, I would vote to fire the Onc and move on. After my MIL's dx od stage 4 it became clear, the family wanted to fight more than the oncologist. Best wishes for you, Beat it!! Quote Link to comment Share on other sites More sharing options...
ernrol Posted May 28, 2007 Share Posted May 28, 2007 If it were me I would be calling M.D, Anderson in Houston. I believe that you are in Canada, but here is a list of places for second opinions: http://www.blochcancer.org/articles/xtrnew.asp If somehow you can afford to consult with M.D. Anderson it would be the move that I would make. From what you have posted I would come to the conclusion that your onc is not as well informed as some others. You need more opinions from better qualified people. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Chanwit Posted May 28, 2007 Share Posted May 28, 2007 For a while there I thought we had the same oncologist but as your Q&As continued I realized that our oncologist wasn't so bad after all. Maybe I'm confused but did you ask all those questions in one office visit? You certainly did your homework in short order. Your dad's profile sounds promising. You said that there was remarkable improvement in SOB and cough reduction. Those were the results my wife had after a few weeks on Tarceva and later scans confirmed that her tumor in her right lung was disolved. I hope his scans will show the same good results. Thanks for the suggestion that Wiesia made to Google 'Cancer Performance Status'. 'Performance Level 3 Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours.' Well my wife received her first Taxol/Carbo dose and radiation while in hospital and subsequent treatments while in wheel chair, on O2, and in bed more that 50%. Sounds like level 3 to me. Maybe we just have an oncologist willing to work with us if we are willing not to give up. You may need to plan for what's next because in our case her Tarceva good results started to slow down after 9 months. If Tarceva is working enjoy the good ride and catch your breath. Take care of yourself - happily - Chanwit Quote Link to comment Share on other sites More sharing options...
yirol Posted May 28, 2007 Author Share Posted May 28, 2007 Yeah, we faxed these questions to the oncologist prior to Dad's next appointment so that we and she could be prepared. Those are her answers. Very not good. Sigh. But, I've gotten so much info from these boards, it's pretty amazing. I couldn't do any of this without you. Just from this thread of postings alone, I now have EVEN MORE concrete questions for the oncologist. That performance chart....very interesting. Funny thing is my Dad sits in the hospital bed 50% of the time mostly because he HATES hospitals (they creep him out) and because he's of the old school where you just don't walk around in your jammies...or because he's afraid to leave the room and miss the doctors (not likely). And, when he is out of the bed, the doctors are SELDOM THERE and, when they come, they seldom ask him about where he went or what he did that day. So...to think that something like that goes into a medical calculation for treatment. Two ships passing in the night.... Thanks guys! Getting Plans B-Z together. Quote Link to comment Share on other sites More sharing options...
hockeyma Posted May 28, 2007 Share Posted May 28, 2007 Yirol Your dad is really sick. But I totally agree - if you can stabalize him on the right chemo without making him too sick then you will win some quality time with him. I don't know what hospital you had your discussion with this dr at....I am assuming Princess Margaret? I questioned alimta and avastin and was never told that either were not available. One does not work well with cancers that have a large mass as they cut off blood supply. As far as radiation - I know they did do radiation on Ger cause of all his pain - but you know what - we wanted it so bad for him it just seemed after that he had less pain but he went right down hill. I wish you the best and keep up the fight. You are doing the same that I did with questions and all - I seemed to have gotten a better response and more respect than you did. I think they either need to explain to you your fathers condition more thoroughly via graphs pictures or whatever - and I think that they need to treat you how they would want to be treated themselves if he was their dad. Have you got the ct scan discs....if you get them you might be able to see yourself why they might be talking this way and performance level 3. Need any more advise or another Canadian to talk to let me know - I am here for support. Heather Quote Link to comment Share on other sites More sharing options...
yirol Posted May 28, 2007 Author Share Posted May 28, 2007 Hi Hockeyma, Sent you a PM. - Yirol Quote Link to comment Share on other sites More sharing options...
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