Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I have to agree with Anita, at the very least, get a 2nd opinion, if you cannot find a CML specialist, perhaps look for a good hematologist. As much as I love and trust my Onc, I would still ask for a 2nd opinion. Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Cheryl, I beg to differ with your Doctor. I have had Cml April will be 3 years now. I was not given but maybe 6 months to live and here I am today still taking Sprycel and alive with a good life. You really need to go see a CML specialist. As in someone that specializes in CML A transplant is not something like taking our your appendix. Then again you might want to ask this Dr if he has a friend he was going to suggest to do the Bone marrow transplant because he may just be trading work to a friend and all you are is a patient. This is your life. You have to take control and look at all the options available today. There are many people on here that are living and very few that have a BMT get to have that luxury. Anita ________________________________ From: thornton_cheryl <thornton_cheryl@...> Sent: Wed, January 20, 2010 4:16:58 PM Subject: [ ] not good news... I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Anita is right! I've been dx'd with CML for 7 years now, on Gleevec most of that time and still ticking strong! The Transplant is the LAST thing you want. Please, do get a second opinion from a CML specialist... even if you have to travel to a major cancer treatment center! Some people do need transplants for CML, but those are very rare these days. Treat yourself to a second opinion, you are worth it! The people in this group can probably give you the name of a specialist near you! Troxel On Wed, Jan 20, 2010 at 2:32 PM, anita <awristen1@...> wrote: > > > Cheryl, > I beg to differ with your Doctor. > I have had Cml April will be 3 years now. > I was not given but maybe 6 months to live and here I am today still taking > Sprycel and alive with a good life. > You really need to go see a CML specialist. As in someone that specializes > in CML > A transplant is not something like taking our your appendix. > > Then again you might want to ask this Dr if he has a friend he was going to > suggest to do the Bone marrow transplant because he may just be trading work > to a friend and all you are is a patient. This is your life. You have to > take control and look at all the options available today. There are many > people on here that are living and very few that have a BMT get to have that > luxury. > Anita > > ________________________________ > From: thornton_cheryl <thornton_cheryl@...<thornton_cheryl%40.ca> > > > <%40> > Sent: Wed, January 20, 2010 4:16:58 PM > Subject: [ ] not good news... > > > I thought things went well - he didn't think blast crisis from initial > reports, but testing he did says the marrow is now 50% - a transplant is the > only option and must be done asap..my sister has been typed but is not a > match... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Hi Cheryl: I do not know if this means anything, or if it will help. When I was diagnosed with CML, my Oncologist sent me all over the place for 2nd and 3rd opinions. He was great like that. He did not want me to just go on what he said. Everybody wanted to do a BMT on me, even after they found out I had no match. I did not jump to do any of it, and went back to my original Oncologist and discussed all the opinions with him, plus he received dictation from all these other doctors. He was shocked when I told him I would stay on Hydrea which was what I had to take to keep the cancer cells down being the initial treatment of Interferon did not work. I say by the Grace Of God, because my Oncologist did not suggest this to me. I heard about clinical trials for Gleevec. I told him that my decision was to go into the trial before we discussed a BMT. He did not agree, and did not encourage me. I just did it by myself. When I went to see the doctor at the trial, and told him how I felt. He totally agreed with me to do the trial, and he said if you have a BMT, your chances of making it will be less than if you try the Gleevec. That was back in 2000, and I Thank God Everyday that I MADE THE DECISION. I am still here and in remission, and I do not know what will happen down the road, but I am here 11 years later to say that I did what I thought best. This is a long post, but I want you to check all your options. After my Oncologist saw what happened he had me do consults on the phone with his patients who did not want a BMT and wanted to try Gleevec. He told me he was so happy and impressed that I was my own advocate for my health, and that he admitted I did the right thing. You can send me a personal e-mail anytime you want. A. > > I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Cheryl, when you say marrow is 50%, what you do mean? 50% what? I'm sure that's going to make a BIG difference in your options. I have been on Gleevec for 10+ years and am doing well, but I have never left Chronic phase. The suggestion to get more than one opinion is excellent advice. BMT is a huge step. Gay Bratton On Jan 20, 2010, at 4:16 PM, thornton_cheryl wrote: > I thought things went well - he didn't think blast crisis from > initial reports, but testing he did says the marrow is now 50% - a > transplant is the only option and must be done asap..my sister has > been typed but is not a match... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 Hi Cheryl, If I'm right then you've been on 800 mg Gleevec. I just want you to know that I failed on Gleevec in my first two years of treatment -- and was 100% positive (20 cells out of 20) when I went on Sprycel. Within 3 months I was PCRU and am still that more than 5 years later. There are so many options these days. You really owe it to yourself and those you love to get a second opinion from a CML specialist. Virginia [ ] not good news... I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2010 Report Share Posted January 20, 2010 I didn't read all the postings, but I think it would be good for your to obtain the lab report on the bone marrow biopsy and post it here. Hopeully you could scan it and share it but even if you have to type it verbatim - I would suggest you do. but lets make sure you " blank out your personal data as weel.  Of course its important to find a local CML expert as well.  But when I read 50% - I have trouble with what it means (50% CML positive, 50% Balst - or what).  Get that record - its yours and then share it with " our experts " .   keep asking questions, keep testing the boundaries and keep your team here posted.  good luck! From: anita <awristen1@...> Subject: Re: [ ] not good news... Date: Wednesday, January 20, 2010, 5:32 PM  Cheryl, I beg to differ with your Doctor. I have had Cml April will be 3 years now. I was not given but maybe 6 months to live and here I am today still taking Sprycel and alive with a good life. You really need to go see a CML specialist. As in someone that specializes in CML A transplant is not something like taking our your appendix. Then again you might want to ask this Dr if he has a friend he was going to suggest to do the Bone marrow transplant because he may just be trading work to a friend and all you are is a patient. This is your life. You have to take control and look at all the options available today. There are many people on here that are living and very few that have a BMT get to have that luxury. Anita ____________ _________ _________ __ From: thornton_cheryl <thornton_cheryl@ .ca> groups (DOT) com Sent: Wed, January 20, 2010 4:16:58 PM Subject: [ ] not good news... I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Is this information come from Dr Lipton ? Is he suppose to be a cml specialist ? Tell us where you live , to see if somebody can suggest you the name of an oncologist . Please , think about that before to choose BMT Emile # 527 of Zavie's Club I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Cheryl, I'm with Anita on this one. A specialist can help you sort this out. You are in Canada, correct? Is coming to the US to at least consult with a specialist an option? There are several very promising drug trials out there that might do the trick. Nine months ago, my doctors told me transplant was my only option--no treatment available would be able to help me. I went to a specialist (Dr. Shah at UCSF) and ended up in the Ariad drug trial and I am " undetectable " now and feeling better than ever. Lottie is in the SKI-??? trial (sorry Lottie--can't remember the exact name off the top of my head) and she is " undetectable " after 14 years or so and many different drug trials Obviously at the end of the day it is your choice the path you take...and I appreciate that location & timing may be a big factor. I just sincerely hope you have a chance to explore some of the other possibilities out there. As Anita said, a transplant is no cakewalk. In any event, my heart goes out to you! I was exactly in your shoes last Spring and can appreciate the emotions that must be going through you right now. Remember, you are not alone! Hugs, Beth [ ] not good news... I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Responding to my own post after reading other's responses...Cheryl--I would like to add that I entered the trial with my original doctors strongly discouraging me from doing so...they really didn't like my choosing to be in a trial. So, whatever path you end up taking, be prepared to look in your heart and do what you feel is right for you. Beth [ ] not good news... I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Hi Cheryl, What test did he do on you that showed 50% and is the 50% referring to blasts? I can't imagine that he could have done a BMB and gotten results back that quickly already??? Tracey > > I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Dear Chery, You have received some wonderful responses from the group. And I feel they are all right - a second opinion would be a great benefit to you. If coming to the U.S. is an option, catch the next jet!! We have very good CML experts close to the Canada border. Michigan is so close, depending on where in Canada you are of course. Keep us posted. We WANT to know how you are doing and care so much about all of us in this group. In the meantime, have your doctor check the donor registry to locate a match for you. It does not mean that you have to go the BMT journey, but if you do the process will be started. God's Blessings to you!! And prayers that someone will enter your life that can help you. Jackie S. From: thornton_cheryl <thornton_cheryl@...> Subject: [ ] not good news... Date: Wednesday, January 20, 2010, 4:16 PM  I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2010 Report Share Posted January 21, 2010 Cheryl - good luck with your decision, but please do take notice of our CML warriors here, they have a wealth of experience and knowledge to help guide you on your CML path. Regards, From: [mailto: ] On Behalf Of thornton_cheryl Sent: Thursday, 21 January 2010 9:17 AM Subject: [ ] not good news... I thought things went well - he didn't think blast crisis from initial reports, but testing he did says the marrow is now 50% - a transplant is the only option and must be done asap..my sister has been typed but is not a match... Quote Link to comment Share on other sites More sharing options...
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