Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 Hi Everybody, I got my latest PCR result. Last time I said I was PCRU, actually taking a closer look with the dr to the 4 month old test report (and at the definition of PCRU) it was positive but too low to measure (signal fall below the linear model of the assay, for the exact phrasing), what is I am guessing about a 5 log reduction with Stanford's lab precision. That's ok, still a lot better than a year ago. Same thing today with the new result, too low to give a number. On another subject, I scrapped myself on the shin, climbing a week ago and the wound was looking nasty (after I went to the swimming pool) and I had a bit of a fever yesterday (100F), so I called Kaiser and got an appointment right away. It's not too bad, but still a 100F fever. I am on antibiotic for 10 days. No swimming for a week, but I can climb if I feel like it. I am still hoping to dive Saturday (I have a dry suit), I ll see if the fever goes away by tomorrow. Cheers, Marcos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2008 Report Share Posted July 11, 2008 I am in Palo Alto. I go to the Santa Clara Kaiser for the hemato/oncology department and at Mountain View for lab, pharmacy and small things like today. Actually I haven't seen my hematologist for over a year, although we communicate once in a while by email or phone. I satisfied overall with Kaiser, as long as I stay in good remission (and in the US) I ll probably stay with them. I thought 3 years ago about switching insurance to be able to go to Stanford's cancer center, but my experience with them has been horrible, so I stayed with Kaiser. I also see and I am in touch with a cml specialist in Paris, France. Marcos. On Thu, Jul 10, 2008 at 7:09 PM, Sharon & Denny <onthewtr@...> wrote: > Marcos > > Another Kaiser member. Where do you live? > > I live in Northern Calif and I am very happy with Kaiser and how t hey have > treated me. > > Sharon T > > _____ > > From: [mailto: ] On Behalf Of Marcos > Perreau Guimaraes > Sent: Thursday, July 10, 2008 6:53 PM > > Subject: [ ] PCR result > > Hi Everybody, > I got my latest PCR result. Last time I said I was PCRU, actually > taking a closer look with the dr to the 4 month old test report (and > at the definition of PCRU) it was positive but too low to measure > (signal fall below the linear model of the assay, for the exact > phrasing), what is I am guessing about a 5 log reduction with > Stanford's lab precision. That's ok, still a lot better than a year > ago. Same thing today with the new result, too low to give a number. > On another subject, I scrapped myself on the shin, climbing a week ago > and the wound was looking nasty (after I went to the swimming pool) > and I had a bit of a fever yesterday (100F), so I called Kaiser and > got an appointment right away. It's not too bad, but still a 100F > fever. I am on antibiotic for 10 days. No swimming for a week, but I > can climb if I feel like it. I am still hoping to dive Saturday (I > have a dry suit), I ll see if the fever goes away by tomorrow. > Cheers, > Marcos. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2008 Report Share Posted July 12, 2008 Hi Marcos, I hope your shin is doing better now and that you were feeling well enough to dive today. I'm sure you know that your PCR results are excellent so congratulations on them! Do you know if it was quantitative or qualitative? Usually qualitative PCR's are more sensitive than the quantitative ones so if it was qualitative, then you're more than likely undetectable on the quantitative one. Happy Diving, Tracey -- In , " Marcos Perreau Guimaraes " <montereyunderwater@...> wrote: > > Hi Everybody, > I got my latest PCR result. Last time I said I was PCRU, actually > taking a closer look with the dr to the 4 month old test report (and > at the definition of PCRU) it was positive but too low to measure > (signal fall below the linear model of the assay, for the exact > phrasing), what is I am guessing about a 5 log reduction with > Stanford's lab precision. That's ok, still a lot better than a year > ago. Same thing today with the new result, too low to give a number. > On another subject, I scrapped myself on the shin, climbing a week ago > and the wound was looking nasty (after I went to the swimming pool) > and I had a bit of a fever yesterday (100F), so I called Kaiser and > got an appointment right away. It's not too bad, but still a 100F > fever. I am on antibiotic for 10 days. No swimming for a week, but I > can climb if I feel like it. I am still hoping to dive Saturday (I > have a dry suit), I ll see if the fever goes away by tomorrow. > Cheers, > Marcos. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2008 Report Share Posted July 13, 2008 Hi Tracey, It was a quantitative test. I still feel pretty good, after 3 years not getting in MMR I am not going to complain. My leg wasn't bothering me and no fever, so I went diving. I had to skip the antibiotic as I don't want to try the effects at 12 atmospheres. We couldn't locate my UBO (Unidentified Bathymetric Object, as I call them), either a bug in the map (happens quite often), a bad depthfider or a mistake writing down the numbers. So we got back to the wreck we found in 2005, but Neptune was not with us and the current was ripping. We tried and I spent 20 mn hanging on the line waiting for my buddy to scooter up the float, my right arm must be 3 " longer. When he finally got there we decided to call it, it would have taken most of our bottom time to get down the 350' line fighting against the current. A nice day on the ocean anyway, some whales and dolphins. Marcos. On Sat, Jul 12, 2008 at 3:35 PM, Tracey <traceyincanada@...> wrote: > Hi Marcos, > > I hope your shin is doing better now and that you were feeling well > enough to dive today. > > I'm sure you know that your PCR results are excellent so > congratulations on them! Do you know if it was quantitative or > qualitative? Usually qualitative PCR's are more sensitive than the > quantitative ones so if it was qualitative, then you're more than > likely undetectable on the quantitative one. > > Happy Diving, > Tracey > > -- In , " Marcos Perreau Guimaraes " > > <montereyunderwater@...> wrote: >> >> Hi Everybody, >> I got my latest PCR result. Last time I said I was PCRU, actually >> taking a closer look with the dr to the 4 month old test report > (and >> at the definition of PCRU) it was positive but too low to measure >> (signal fall below the linear model of the assay, for the exact >> phrasing), what is I am guessing about a 5 log reduction with >> Stanford's lab precision. That's ok, still a lot better than a year >> ago. Same thing today with the new result, too low to give a > number. >> On another subject, I scrapped myself on the shin, climbing a week > ago >> and the wound was looking nasty (after I went to the swimming pool) >> and I had a bit of a fever yesterday (100F), so I called Kaiser and >> got an appointment right away. It's not too bad, but still a 100F >> fever. I am on antibiotic for 10 days. No swimming for a week, but > I >> can climb if I feel like it. I am still hoping to dive Saturday (I >> have a dry suit), I ll see if the fever goes away by tomorrow. >> Cheers, >> Marcos. >> > > -- Marcos Perreau Guimaraes Suppes Brain Lab Ventura Hall - CSLI Stanford University 220 Panama street Stanford CA 94305-4101 650 614 2305 650 630 5015 (cell) marcospg@... montereyunderwater@... www.stanford.edu/~marcospg/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Oh. Well, I am not sure what to think then. I am really trying not to worry and get my self all upset. What should I do? Dr. Tallman was very happy with the change from 42 to 10. I had really been hoping to see it go down. I am not sure what to do. Jen > > > > Hi, > > > > I would be concerned. From your numbers it looks like the Gleevec is not > > having any effect. There has to be a reason for this. > > > > Zavie > > > > > > Zavie (age 71) > > 67 Shoreham Avenue > > Ottawa, Canada, K2G 3X3 > > dxd AUG/99 > > INF OCT/99 to FEB/00, CHF > > No meds FEB/00 to JAN/01 > > Gleevec since MAR/27/01 (400 mg) > > CCR SEP/01. #102 in Zero Club > > 2.8 log reduction Sep/05 > > 3.0 log reduction Jan/06 > > 2.9 log reduction Feb/07 > > 3.6 log reduction Apr/08 > > 3.6 log reduction Sep/08 > > 3.7 log reduction Jan/09 > > 3.8 log reduction May/09 > > 3.8 log reduction Aug/09 > > 4.0 log reduction Dec/09 > > e-mail: zmiller@ > > Tel: 613-726-1117 > > Fax: 613-482-4801 > > Cell: 613-282-0204 > > ID: zaviem > > Tel in FL: 561-429-5507 > > > > > > > > > > > > _____ > > > > From: groups (DOT) <mailto:%40> com > [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > > > > Sent: February-04-10 6:07 PM > > groups (DOT) <mailto:%40> com > > Subject: [ ] PCR result > > > > > > > > > > I received my result from my last PCR. It was 11.3. My previous test was > in > > Oct, that was 10.5. The PA told me not to be worried about it. It isn't > much > > of a change. I have a bone marrow biopsy scheduled next week. She said > they > > will do another molecular with the marrow. > > > > Jen > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Hi , I agree with Zavie. In the world of PCR's, a 42 and a 10 are almost identical. In order to have a meaningful change in a PCR, the number would need to change by at least a decimal. For example if you went from 42 to 4.2 than that would be a one log reduction. Still not a HUGE difference but a bit more meaningful. To put it in perspective, it's estimated that CCR is about equal to a 2 log reduction. In your case that would be 0.42. It's great that you're having another BMB soon, this will give you a much clearer picture of what's going on. Let us know when you get the results. Tracey > > > > > > Hi, > > > > > > I would be concerned. From your numbers it looks like the Gleevec is not > > > having any effect. There has to be a reason for this. > > > > > > Zavie > > > > > > > > > Zavie (age 71) > > > 67 Shoreham Avenue > > > Ottawa, Canada, K2G 3X3 > > > dxd AUG/99 > > > INF OCT/99 to FEB/00, CHF > > > No meds FEB/00 to JAN/01 > > > Gleevec since MAR/27/01 (400 mg) > > > CCR SEP/01. #102 in Zero Club > > > 2.8 log reduction Sep/05 > > > 3.0 log reduction Jan/06 > > > 2.9 log reduction Feb/07 > > > 3.6 log reduction Apr/08 > > > 3.6 log reduction Sep/08 > > > 3.7 log reduction Jan/09 > > > 3.8 log reduction May/09 > > > 3.8 log reduction Aug/09 > > > 4.0 log reduction Dec/09 > > > e-mail: zmiller@ > > > Tel: 613-726-1117 > > > Fax: 613-482-4801 > > > Cell: 613-282-0204 > > > ID: zaviem > > > Tel in FL: 561-429-5507 > > > > > > > > > > > > > > > > > > _____ > > > > > > From: groups (DOT) <mailto:%40> com > > [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > > > > > > Sent: February-04-10 6:07 PM > > > groups (DOT) <mailto:%40> com > > > Subject: [ ] PCR result > > > > > > > > > > > > > > > I received my result from my last PCR. It was 11.3. My previous test was > > in > > > Oct, that was 10.5. The PA told me not to be worried about it. It isn't > > much > > > of a change. I have a bone marrow biopsy scheduled next week. She said > > they > > > will do another molecular with the marrow. > > > > > > Jen > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Thank you both for opening my eyes to this. I have left a message for Dr. Tallman to contact me. I am also actively looking for another Dr. I will travel anywhere. Any recommendations? > > > > > > > > Hi, > > > > > > > > I would be concerned. From your numbers it looks like the Gleevec is not > > > > having any effect. There has to be a reason for this. > > > > > > > > Zavie > > > > > > > > > > > > Zavie (age 71) > > > > 67 Shoreham Avenue > > > > Ottawa, Canada, K2G 3X3 > > > > dxd AUG/99 > > > > INF OCT/99 to FEB/00, CHF > > > > No meds FEB/00 to JAN/01 > > > > Gleevec since MAR/27/01 (400 mg) > > > > CCR SEP/01. #102 in Zero Club > > > > 2.8 log reduction Sep/05 > > > > 3.0 log reduction Jan/06 > > > > 2.9 log reduction Feb/07 > > > > 3.6 log reduction Apr/08 > > > > 3.6 log reduction Sep/08 > > > > 3.7 log reduction Jan/09 > > > > 3.8 log reduction May/09 > > > > 3.8 log reduction Aug/09 > > > > 4.0 log reduction Dec/09 > > > > e-mail: zmiller@ > > > > Tel: 613-726-1117 > > > > Fax: 613-482-4801 > > > > Cell: 613-282-0204 > > > > ID: zaviem > > > > Tel in FL: 561-429-5507 > > > > > > > > > > > > > > > > > > > > > > > > _____ > > > > > > > > From: groups (DOT) <mailto:%40> com > > > [mailto:groups (DOT) <mailto:%40> com] On Behalf Of > > > > > > > > Sent: February-04-10 6:07 PM > > > > groups (DOT) <mailto:%40> com > > > > Subject: [ ] PCR result > > > > > > > > > > > > > > > > > > > > I received my result from my last PCR. It was 11.3. My previous test was > > > in > > > > Oct, that was 10.5. The PA told me not to be worried about it. It isn't > > > much > > > > of a change. I have a bone marrow biopsy scheduled next week. She said > > > they > > > > will do another molecular with the marrow. > > > > > > > > Jen > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 > > > Oh. Well, I am not sure what to think then. I am really trying not to worry and get my self all upset. What should I do? Dr. Tallman was very happy with the change from 42 to 10. I had really been hoping to see it go down. I am not sure what to do. > > Jen ____________________________ Hi Jen, When people just give numbers, it is hard to tell what they are talking about??? if this is %.........then I disagree with Zavie and Tracey........ if you went from 42% leuk. cells to 10%, I think this is a good change....it is a 4x (4 fold) change, and I think it was in a short period of time???? Please get your doctor to explain exactly what the numbers mean and then let the list know. We all get differnt kinds of tests results, esp with PCR.....so it is hard to know and for us to interpret someone else's results without knowing what the numbers are referring to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 5, 2010 Report Share Posted February 5, 2010 Jen, First, consult your doctor for medical advice. The doc is looking at the actual results with the ranges and measurements from a particular lab. If you dont feel your doc is an expert in cml then change docs. People online will give you their best info but they are not licensed to actually advise you, nor do they have all the info needed to do so. Second, at a recognized cancer center in the US I was told not to rely on PCR testing until after I reached 0 out of 20 in cytogenetic testing (the CCR complete cytogenetic response folks talk about). Then after reaching that level of response the PCR becomes more precise. Until then it may be indicative but not precise. For instance my first or second PCR was 34 then UP then down. I totally freaked when it went up and i was told MANY times... The PCR is too sensative when levels are high in the beginning... Wait... I did and then all of a sudden it was O.1 then lower. I now only get a PCR report that says " less than 0.01 " . That way if it goes up by .00001 i will never know. And honestly I am glad. That way i can focus on maintaining stability in the disease and not a tiny fraction one way or another. I'm giving you this example because different places do things differently. That makes it hard to compare numbers out of context...online. The main point here is... Followup with your doctor (hopefully an expert) and confirm where you are in response to the drugs... Have you reached CCR and are now really looking at PCR tests more closely... Or is it too soon to use PCR results only. Breathe deep and keep trying to contact your doctor. You are the customer! That's my 2cents. Rhonda Sent from my Verizon Wireless BlackBerry Re: [ ] PCR result > > > Oh. Well, I am not sure what to think then. I am really trying not to worry and get my self all upset. What should I do? Dr. Tallman was very happy with the change from 42 to 10. I had really been hoping to see it go down. I am not sure what to do. > > Jen ____________________________ Hi Jen, When people just give numbers, it is hard to tell what they are talking about??? if this is %.........then I disagree with Zavie and Tracey........ if you went from 42% leuk. cells to 10%, I think this is a good change....it is a 4x (4 fold) change, and I think it was in a short period of time???? Please get your doctor to explain exactly what the numbers mean and then let the list know. We all get differnt kinds of tests results, esp with PCR.....so it is hard to know and for us to interpret someone else's results without knowing what the numbers are referring to. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2010 Report Share Posted February 7, 2010 Dear & Zavie, Now I know why Dr Cortes never gets excited about the decrease in my PCR!! : ) I would think it was good news, but he just agreed it was going in the right direction. I can't wait to get that decimal point moved. Thank you for putting it in my slow-minded terms. God Bless, Jackie S. ________________________________ From: traceyincanada <traceyincanada@...> Sent: Thu, February 4, 2010 9:56:14 PM Subject: Re: [ ] PCR result Hi , I agree with Zavie. In the world of PCR's, a 42 and a 10 are almost identical. In order to have a meaningful change in a PCR, the number would need to change by at least a decimal. For example if you went from 42 to 4.2 than that would be a one log reduction. Still not a HUGE difference but a bit more meaningful. To put it in perspective, it's estimated that CCR is about equal to a 2 log reduction. In your case that would be 0.42. It's great that you're having another BMB soon, this will give you a much clearer picture of what's going on. Let us know when you get the results. Tracey > > > > > > Hi, > > > > > > I would be concerned. From your numbers it looks like the Gleevec is not > > > having any effect. There has to be a reason for this. > > > > > > Zavie > > > > > > > > > Zavie (age 71) > > > 67 Shoreham Avenue > > > Ottawa, Canada, K2G 3X3 > > > dxd AUG/99 > > > INF OCT/99 to FEB/00, CHF > > > No meds FEB/00 to JAN/01 > > > Gleevec since MAR/27/01 (400 mg) > > > CCR SEP/01. #102 in Zero Club > > > 2.8 log reduction Sep/05 > > > 3.0 log reduction Jan/06 > > > 2.9 log reduction Feb/07 > > > 3.6 log reduction Apr/08 > > > 3.6 log reduction Sep/08 > > > 3.7 log reduction Jan/09 > > > 3.8 log reduction May/09 > > > 3.8 log reduction Aug/09 > > > 4.0 log reduction Dec/09 > > > e-mail: zmiller@ > > > Tel: 613-726-1117 > > > Fax: 613-482-4801 > > > Cell: 613-282-0204 > > > ID: zaviem > > > Tel in FL: 561-429-5507 > > > > > > > > > > > > > > > > > > _____ > > > > > > From: groups (DOT) <mailto:% 40groups. com> com > > [mailto:@ groups. <mailto:% 40groups. com> com] On Behalf Of > > > > > > Sent: February-04- 10 6:07 PM > > > groups (DOT) <mailto:% 40groups. com> com > > > Subject: [ ] PCR result > > > > > > > > > > > > > > > I received my result from my last PCR. It was 11.3. My previous test was > > in > > > Oct, that was 10.5. The PA told me not to be worried about it. It isn't > > much > > > of a change. I have a bone marrow biopsy scheduled next week. She said > > they > > > will do another molecular with the marrow. > > > > > > Jen > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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