Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 Hi everyone! I posted awhile back about my husband finding out he may have CML....Well results are in and he does. No real surprise - but here is what I know nothing about or haven't heard anyone in this instance- The hematologist said my husband has the PH chrom. but that it is a mutation of 3 chrom. rather than just 2...She said its a bit more complicated and poorer prognosis but she said she will be on top of things. As well- without treatment in chronic phase - how fast do you WBC go up? His bloodtests showed they went up 10000 or maybe its 100 000 in 30 days. Anyone?? My husband is bad and funny....(depends how you look at it) He says he is even a weirdo amoung other CML patients and maybe it means he really is a super hero with an unknown ability to fly or make things move...I think maybe the ability to feed the children chocolate for dinner is more his superpower! I would really appreciate any feedback - there seems to be so much more info here than anywhere else- He begins gleevec tomorrow - so we are praying the side effects are not too bad. Thanks so much! Shalyn " Catch on fire with enthusiasm and people will come for miles to watch you burn. " - Wesley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 At 10:26 PM 10/24/06 -0700, you wrote: >The hematologist said my husband has the PH chrom. but that it is a >mutation of 3 chrom. rather than just 2...She said its a bit more >complicated and poorer prognosis but she said she will be on top of >things. As well- without treatment in chronic phase - how fast do you >WBC go up? His bloodtests showed they went up 10000 or maybe its 100 >000 in 30 days. Anyone?? Hi Shalyn, There are others who have different chromosome variations, instead of the more typical translocation of 9 and 22. If his oncologist is not actually a cml specialist, you could consider getting a 2nd opinion from a specialist. Tell us where you live and we can mention some of the major cml centers. Or, you doctor could consult for you with a cml specialist, like Dr. Druker at OHSU. Only when someone has seen hundreds, thousands of cml patient, do they know the significant of some of the variations...but with today's treatment, it may be none. My first elevated blood test was 21,000 and a month later it was 93,000 (without treatment). And one last point, if you husband has siblings, he might want to have them tested just to know ahead of any need if he will have a related donor for a bone marrow transplant....this is pretty standard and easy to do. There is usually a blood collection kit that he could send to his siblings and they return the blood to the testing center (this is just blood out of the arm). C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2006 Report Share Posted October 25, 2006 HI Shalyn, Your husbands WBC was most likely 100,000, because I was told by my doc that 10,000 is still in the safe range. I can tell you that Gleevec knocked my counts down in only a month, so once he starts on that it should kick the snot out of that pesky WBC..hehe. It was funny you mention how your husband was joking about being a super hero because of his mutation, I was joking with someone in the group that It is a shame I couldn't get some sort of special power with my mutation. I had been going through some crap with various companies over the phone, and wished I had the power to send electical current through phone lines..hehe I take my Gleevec at night before I go to sleep to help with nausea, just make sure he takes it on a full stomach, and drinks plenty of water. Don't worry to much just yet about side effects. There are many who have very little or hardly none at all. Take care, Terry On 10/25/06, Cogan <ncogan@...> wrote: > > At 10:26 PM 10/24/06 -0700, you wrote: > >The hematologist said my husband has the PH chrom. but that it is a > >mutation of 3 chrom. rather than just 2...She said its a bit more > >complicated and poorer prognosis but she said she will be on top of > >things. As well- without treatment in chronic phase - how fast do you > >WBC go up? His bloodtests showed they went up 10000 or maybe its 100 > >000 in 30 days. Anyone?? > > > Hi Shalyn, > > There are others who have different chromosome variations, instead of the > more typical translocation of 9 and 22. If his oncologist is not actually > a > cml specialist, you could consider getting a 2nd opinion from a > specialist. > Tell us where you live and we can mention some of the major cml centers. > Or, you doctor could consult for you with a cml specialist, like Dr. > Druker > at OHSU. Only when someone has seen hundreds, thousands of cml patient, do > they know the significant of some of the variations...but with today's > treatment, it may be none. > > My first elevated blood test was 21,000 and a month later it was 93,000 > (without treatment). > > And one last point, if you husband has siblings, he might want to have > them > tested just to know ahead of any need if he will have a related donor for > a > bone marrow transplant....this is pretty standard and easy to do. There is > usually a blood collection kit that he could send to his siblings and they > return the blood to the testing center (this is just blood out of the > arm). > > C. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Shalyn, I'm extra weird as well. I have a slight, 3rd mutation as well which was found during my BMB after first being dx'ed. My Onc. said that it " may or may not " affect me in the long run. So far I'm doing great with Gleevec and life is normal. > > Hi everyone! > > I posted awhile back about my husband finding out he may have > CML....Well results are in and he does. No real surprise - but here is > what I know nothing about or haven't heard anyone in this instance- > > The hematologist said my husband has the PH chrom. but that it is a > mutation of 3 chrom. rather than just 2...She said its a bit more > complicated and poorer prognosis but she said she will be on top of > things. As well- without treatment in chronic phase - how fast do you > WBC go up? His bloodtests showed they went up 10000 or maybe its 100 > 000 in 30 days. Anyone?? My husband is bad and funny....(depends how > you look at it) He says he is even a weirdo amoung other CML patients > and maybe it means he really is a super hero with an unknown ability > to fly or make things move...I think maybe the ability to feed the > children chocolate for dinner is more his superpower! > > I would really appreciate any feedback - there seems to be so much > more info here than anywhere else- He begins gleevec tomorrow - so we > are praying the side effects are not too bad. Thanks so much! > > Shalyn > > > " Catch on fire with enthusiasm and people will come for miles to watch you > burn. " - Wesley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 I was dx in Jun 06 and my BMB showed an additional mutation between Chromosome #22 & #1. My hem/onc sent me to Emory Cancer center for a 2nd opinion and was also told they would just watch as it " may or may not " affect me. My WBC returned to normal ranges within 3 weeks after starting Gleevec. I found taking my pill in the middle of a large breakfast with a large glass of water cuts down on side effects. The first 3 weeks, I had slight nausea and joint pain, but now no nausea and some pain only in the evening if I've been extremely active. A couple of Advil seems to help with the join pain. I just had another visit and all are still in normal range except potassium down a little. For those just newly diagnosed, read all you can on the internet, get a copy of your blood test and keep a record, ask your doctor as many questions as you can. So few Onco are familiar with CML, so you really want to learn all you can. A question for the group. My dr recommended I take the flu shot, which I have never had, nor have I had the flu. Since our immune system is down, does the flu shot make you sick? I'll really a little scared to take one. Thanks Barbara from Atlanta Dx 6-18-06 _____ From: [mailto: ] On Behalf Of jmace2000 Sent: Thursday, October 26, 2006 10:31 AM Subject: [ ] Re: anyone else?? Shalyn, I'm extra weird as well. I have a slight, 3rd mutation as well which was found during my BMB after first being dx'ed. My Onc. said that it " may or may not " affect me in the long run. So far I'm doing great with Gleevec and life is normal. --- In groups (DOT) <mailto:%40> com, shalyn@... wrote: > > Hi everyone! > > I posted awhile back about my husband finding out he may have > CML....Well results are in and he does. No real surprise - but here is > what I know nothing about or haven't heard anyone in this instance- > > The hematologist said my husband has the PH chrom. but that it is a > mutation of 3 chrom. rather than just 2...She said its a bit more > complicated and poorer prognosis but she said she will be on top of > things. As well- without treatment in chronic phase - how fast do you > WBC go up? His bloodtests showed they went up 10000 or maybe its 100 > 000 in 30 days. Anyone?? My husband is bad and funny....(depends how > you look at it) He says he is even a weirdo amoung other CML patients > and maybe it means he really is a super hero with an unknown ability > to fly or make things move...I think maybe the ability to feed the > children chocolate for dinner is more his superpower! > > I would really appreciate any feedback - there seems to be so much > more info here than anywhere else- He begins gleevec tomorrow - so we > are praying the side effects are not too bad. Thanks so much! > > Shalyn > > > " Catch on fire with enthusiasm and people will come for miles to watch you > burn. " - Wesley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2006 Report Share Posted October 26, 2006 Barbara: I have been told both ways with the flu shot. I did not get one last year, my current ONC said it was not a good idea for the reason you stated. Anyone else got the word on this? T Stone barbara <barb521@...> wrote: I was dx in Jun 06 and my BMB showed an additional mutation between Chromosome #22 & #1. My hem/onc sent me to Emory Cancer center for a 2nd opinion and was also told they would just watch as it " may or may not " affect me. My WBC returned to normal ranges within 3 weeks after starting Gleevec. I found taking my pill in the middle of a large breakfast with a large glass of water cuts down on side effects. The first 3 weeks, I had slight nausea and joint pain, but now no nausea and some pain only in the evening if I've been extremely active. A couple of Advil seems to help with the join pain. I just had another visit and all are still in normal range except potassium down a little. For those just newly diagnosed, read all you can on the internet, get a copy of your blood test and keep a record, ask your doctor as many questions as you can. So few Onco are familiar with CML, so you really want to learn all you can. A question for the group. My dr recommended I take the flu shot, which I have never had, nor have I had the flu. Since our immune system is down, does the flu shot make you sick? I'll really a little scared to take one. Thanks Barbara from Atlanta Dx 6-18-06 _____ From: [mailto: ] On Behalf Of jmace2000 Sent: Thursday, October 26, 2006 10:31 AM Subject: [ ] Re: anyone else?? Shalyn, I'm extra weird as well. I have a slight, 3rd mutation as well which was found during my BMB after first being dx'ed. My Onc. said that it " may or may not " affect me in the long run. So far I'm doing great with Gleevec and life is normal. --- In groups (DOT) <mailto:%40> com, shalyn@... wrote: > > Hi everyone! > > I posted awhile back about my husband finding out he may have > CML....Well results are in and he does. No real surprise - but here is > what I know nothing about or haven't heard anyone in this instance- > > The hematologist said my husband has the PH chrom. but that it is a > mutation of 3 chrom. rather than just 2...She said its a bit more > complicated and poorer prognosis but she said she will be on top of > things. As well- without treatment in chronic phase - how fast do you > WBC go up? His bloodtests showed they went up 10000 or maybe its 100 > 000 in 30 days. Anyone?? My husband is bad and funny....(depends how > you look at it) He says he is even a weirdo amoung other CML patients > and maybe it means he really is a super hero with an unknown ability > to fly or make things move...I think maybe the ability to feed the > children chocolate for dinner is more his superpower! > > I would really appreciate any feedback - there seems to be so much > more info here than anywhere else- He begins gleevec tomorrow - so we > are praying the side effects are not too bad. Thanks so much! > > Shalyn > > > " Catch on fire with enthusiasm and people will come for miles to watch you > burn. " - Wesley > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 I have had a flu shot ever since my diagnosis 7 years ago, and have never gotten sick from it. I have also never had the flu. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 It's absolutely not true that the flu shot is contraindicated in people with CML! In fact, you *should* get it. The flu shot is NOT a live vaccine so it cannot give you the flu or make you sick. Whoever tells you that you shouldn't get it because of possible immunosuppression is wrong, and you should get it because with a compromised immune system you are more likely to get the flu and develop serious complications from it. And if you get the flu, you also risk infecting people around you. Thousands of people die from the flu every year, and these are often people who have chronic health conditions. People with CML should also talk to their providers about getting a pneumonia vaccine. It's so frustrating to see the myths surrounding the flu vaccine continue to linger on; I certainly hope that people here don't fall for these myths. Here are the people who SHOULD get vaccinated each year; as you can see, this list includes people with CML: People at high risk for complications from the flu, including: 8 Children aged 6 months until their 5th birthday * Pregnant women * People 50 years of age and older * People of any age with certain chronic medical conditions * People who live in nursing homes and other long term care facilities. People who live with or care for those at high risk for complications from flu, including: * Household contacts of persons at high risk for complications from the flu (see above) * Household contacts and out of home caregivers of children less than 6 months of age (these children are too young to be vaccinated) * Healthcare workers. Here is a list of the people who shouldn't be vaccinated without talking to their doctor first: * People who have a severe allergy to chicken eggs. * People who have had a severe reaction to an influenza vaccination in the past. * People who developed Guillain-Barré syndrome (GBS) within 6 weeks of getting an influenza vaccine previously. * Influenza vaccine is not approved for use in children less than 6 months of age. * People who have a moderate or severe illness with a fever should wait to get vaccinated until their symptoms lessen. This information is from the CDC. ~ G. www.upstairswindow.org www.cmlsupport.com RE: [ ] Re: anyone else?? <snip> A question for the group. My dr recommended I take the flu shot, which I have never had, nor have I had the flu. Since our immune system is down, does the flu shot make you sick? I'll really a little scared to take one. Thanks Barbara from Atlanta Dx 6-18-06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hi, Like the others on the list I have had a flu shot throughout my bout with CML without any ill effects. Zavie RE: [ ] Re: anyone else?? I have had a flu shot ever since my diagnosis 7 years ago, and have never gotten sick from it. I have also never had the flu. --------------------------------- Get your email and more, right on the new .com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 I will chime in also. Flu Shots are a HAVE TOO at my house. I have had one every year since my 1992 By-Pass surgery. I have yet to have any reaction to the shot. The Red Cross Nurse that gives the shots at my church has me on her " must check with list " and when there is a shortage in vaccine calls me to get mine early. My Wife also has medical problems and is a child care provider and she is treated the same way. Please don't lower your immunity and energy levels by exposing yourself to so preventable. H. > > It's absolutely not true that the flu shot is contraindicated in people with > CML! In fact, you *should* get it. The flu shot is NOT a live vaccine so it > cannot give you the flu or make you sick. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 Hi, Barbara. I got a flu shot last year without adverse effects. I never asked my oncologist. I had planned to get one this year, too - - maybe I'll run it by him this time. Warmest regards. (Dov) > > > > Hi everyone! > > > > I posted awhile back about my husband finding out he may have > > CML....Well results are in and he does. No real surprise - but here > is > > what I know nothing about or haven't heard anyone in this instance- > > > > The hematologist said my husband has the PH chrom. but that it is > a > > mutation of 3 chrom. rather than just 2...She said its a bit more > > complicated and poorer prognosis but she said she will be on top > of > > things. As well- without treatment in chronic phase - how fast do > you > > WBC go up? His bloodtests showed they went up 10000 or maybe its > 100 > > 000 in 30 days. Anyone?? My husband is bad and funny....(depends > how > > you look at it) He says he is even a weirdo amoung other CML > patients > > and maybe it means he really is a super hero with an unknown > ability > > to fly or make things move...I think maybe the ability to feed the > > children chocolate for dinner is more his superpower! > > > > I would really appreciate any feedback - there seems to be so much > > more info here than anywhere else- He begins gleevec tomorrow - so > we > > are praying the side effects are not too bad. Thanks so much! > > > > Shalyn > > > > > > " Catch on fire with enthusiasm and people will come for miles to > watch you > > burn. " - Wesley > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2006 Report Share Posted October 27, 2006 At 05:48 PM 10/26/06 -0400, you wrote: >A question for the group. My dr recommended I take the flu shot, which I >have never had, nor have I had the flu. Since our immune system is down, >does the flu shot make you sick? I'll really a little scared to take one. Hi Barbara, Most oncologists and cml specialists recommend that you get a flu shot. The shot is made up of dead virus, so it cannot make you sick. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 2006 Report Share Posted November 1, 2006 >I was dx June 05. Had my first ever flu shot 4 months later. I was not sick from it. I was told in no uncertain terms that I needed to get it. I will get it again this year as soon as it is available here... > I have had a flu shot ever since my diagnosis 7 years ago, and have never gotten sick from it. I have also never had the flu. > > > > > > > --------------------------------- > Get your email and more, right on the new .com > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.