Guest guest Posted July 23, 2001 Report Share Posted July 23, 2001 Reg Reynolds If I remember correctly, go to / Click on " My Groups " Click on " Files " > From: " Crawford " <laurac5@...> > Subject: Re: ablls > > <snip>I can never remember how you get the archives however -- can someone > post > that again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Yesterday my primary MD prescribed Lipitor for high cholesterol (220) bad LDL was 148. He is aware that I am HCV positive since 1992. My last treatment with the combo was completed Nov 2000, liver counts are 52 and 55 (this was my 3rd episode with IFN and Reb). I am concerned about taking this med , should I be? Dr.Misra would appreciate your opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Yesterday my primary MD prescribed Lipitor for high cholesterol (220) bad LDL was 148. He is aware that I am HCV positive since 1992. My last treatment with the combo was completed Nov 2000, liver counts are 52 and 55 (this was my 3rd episode with IFN and Reb). I am concerned about taking this med , should I be? Dr.Misra would appreciate your opinion. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hi, Your AST/ALT are nearly normal, so its okay to take Lipitor, keep a check on your enzymes though every 4 wks . Your cholesterol however is not very high, if you give up red meat and fats, along with regular exercise..it may be sufficient to bring it down, if you havent done that , then its worth trying for 3 months before commencing Lipitor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hi, Your AST/ALT are nearly normal, so its okay to take Lipitor, keep a check on your enzymes though every 4 wks . Your cholesterol however is not very high, if you give up red meat and fats, along with regular exercise..it may be sufficient to bring it down, if you havent done that , then its worth trying for 3 months before commencing Lipitor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 3, 2002 Report Share Posted January 3, 2002 ONe of my children is recovered from autism, albeit with the autistic moms eye, probably shadowings here or there. The other is severe, seizures too. More injured too from vaccinations Just today my son was put on valtrex, clonadine and also certex for histamines. His neuro histohistamines are whack. (three times that of normal-which indicates to me a swelling took place in the brain from vaccinations). The valtrex is changed from gancyglovier, since we didn't see a lot of effect on gan. I would still be weary of the mercury, even if it comes back normal limits. Read the autism mercury site to see what I mean. Mercury cleaves tight to those bundles in the brain, and will not easily display their toxicity since they are so tightly bound to them. My son also came out normal limits, but then when we did a challenge DMSA it was pouring out of him. I would really check the stealth virus angle personally. It will help you see that even if there may not have been a vaccinosis injury, it can certainly awaken the virus layed hidden. www.ccid.org Also, order a seizure e book (free) from williss Langford. Many things overlooked that will become obvious to you. Email him at willissl@... . Also list, had another seizure today, at RITE AID no less....great timing NOT. Kathy Re: [ ] Digest Number 602 > Kathy, > We did test her blood for mercury and it came back negative or " within normal > limits, " but it was over 3wks. after the vaccinations. I've read conflicting > opinions on the best timing/methods to test for mercury toxicity. I've heard > it's important to check soon after vaccinations as the mercury tends quickly > leave the blood to find and saturate the body's fatty tissues (i.e., brain) > and remain latent for years. So, who knows, very frustrating... As I said > earlier, my daughters physicians don't agree with any of my thoughts. They > tend to want to dismiss it as " genetics " even though we've never had anyone > on either side with epilepsy. So, It might be difficult to get them to order > it. I wonder if it matters who orders it, I could have one of the > cardiologists in the area I work do it for me. Thanks for the info. I've read > a lot about autism and I believe Jordan was on that track several months > back. I think we intervened just in the nick of time. I had been reading > about it, there is a lot of info. out there. Her physician had already > diagnosed her with a developmental delay at her 1yr. appt. Thank the Lord > that's changed now. What else are you doing to treat the stealth virus > besides the antiviral meds? How are your children now? Do they all have > epilepsy/autism? > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 To Happy Mom: Congratulations. To finally hear your child call out to you is a special moment indeed. My apraxic guy was 4 years old and that moment will stay with me forever. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 RE: Autism Hello Darla, I also agree with the suggestion to get Dr. Debi Drake's CDs on Autism & Leaky Gut. She's also big on nutrition. Its my belief that so much is linked to poor AMINO ACIDS. Check that out on the Nutrition Panel and also take a look at the Vitamin K levels. A diet rich in greens are generally loaded with natural Amino Acids. ie: Spirulina has 20 essential Amino Acids and I know Chorella has quite a few also. I use a nano-clustered Spirulina for better absorption and a safe Amino Acids complex called " Protivity. " Feel free to email me and I can send you more info. FYI: Low Amino Acids can also result in low Serotonin levels too. Personally I can feel the difference if I'm low in Amino Acids - edgy and easily distracted. ADD 'used' to come up on the Brain Scan an no longer does - also I 'used' to have the symptoms of dyslexia too = all cleared up. I think its due to a better diet , better nutritional supplements & the QXCI for me. Hope this helps! > Subject: Autism > > Does anyone have any good supplements and protocol on the QX for autism? > > Thanks, > Darla ===== (`'·.¸(`'·.¸ ¸.·'´) ¸.·'´) «´¨ Love, ** ¨`» (¸.·'´(¸.·'´ `'·.¸)`' ·.¸) ¸.·´ ( `·.¸ `·.¸ ) ¸.·)´ (.·´ `*. *. The whole world can love you, but that love will not make you happy. What will make you happy is the love coming out of you. That is the love that will make a difference. ~~~ Don Ruiz ~~~ http://alternativehopeforhepc.com http://alternativehope.royalbodycare.com (membership discount pkgs.) ***Free Audio Tape & Info Pak - Call: 877 367-9875*** The Q2 Energy Spa - http://alternativehopeQ2energy.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hey Cam: 4 years ago when I was where you are now in your survival; I had to: 1) fire my diagnosing Oncologist; #2) educate myself with information from my sister & brother survivors who were 'in the know', and #3 communicate with my current Oncologist. I was hospitalized many times, given Procrit injections, adjustments of dosage from 200-600 m.g. and finally 300 m.g. proved to be my niche to reach " 0/Negative " on the FISH Test. Many Hematologists & Oncologists say that 300 or below is not beneficial to our survival or our becoming 'resistant'. I cannot stress enough that as we are all statistics. . .we are also individuals in our survival. My age, weight, & overall health made it impossible for me to tolerate 600 or 800 at the beginning. . .I went through H**l with side effects as my body adjusted to the gold. My body also didn't tolerate 400 m.g. until a year ago. I don't know your age, weight or overall health, and your H/O may be a Newbie to this also. Therefore; Relax & Enjoy your new life as a survivor, arm yourself with information and get support from the group, and remember 'too much information in some cases may be more detrimental--than not enough information'. Take care, I have All in my prayers. " K " " I AIN'T FINISHED YET " !!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 " I Aint Finished Yet " and all--- I am soooooooooo glad you wrote this email---it is important to remember that of course there are certain " rules of thumb " when treating CML and any disease for that matter--but--ultimately---we are all human beings and all respond differently! My husband was diagnosed July of 2006. He was on 600mg of Gleevec, could not tolerate it, then went to 500. He then became severly neutropenic and was hospitalized for 1 month and taken off Gleevec. It was resumed at 200mg and quickly went up to 300--where he stayed for about 1.5 months while his numbers steadly increased. He has now been back on 400mg for about 2 weeks now, and doing well. But--who knows...maybe in another couple weeks they will realize 300mg is his " magic " doseage. We, too, (along with his doc that we really like), know that 400mg is optimal doseage---for MOST people. But, is an individual and his doctor has to treat him that way, using her knowledge in treating other patients, of course, but responding to 's body and what his body is telling her to do. We live in the Los Angeles area and are lucky to have had access to some very good doctors, many of whom are out of the City of Hope Cancer Center, and many of whom were involved in the trials of Gleevec. But, even they were differering in opinions when it came to my husband's neutropenia and whether or not to take him off Gleevec, reduce it, give him WBC boosters, put him on a bone marrow transplant list, etc. I feel like the more posts I read on this forum, the more " scared " I get about my husband's future. But--then I remind myself that what might be the " norm " for most people with CML, might not work for him. I am glad to know that " I Aint Finished Yet " has achieved a 0/Negative " on the FISH Test with only being on 300mg...thanks for sharing! Weez >From: IAintFinishedYet <kttweety@...> >Reply- > >Subject: Re: [ ] Digest Number 602 >Date: Wed, 17 Jan 2007 04:44:12 -0800 (PST) > >Hey Cam: > 4 years ago when I was where you are now in your survival; I had to: 1) >fire my diagnosing Oncologist; #2) educate myself with information from my >sister & brother survivors who were 'in the know', and #3 communicate with >my current Oncologist. I was hospitalized many times, given Procrit >injections, adjustments of dosage from 200-600 m.g. and finally 300 m.g. >proved to be my niche to reach " 0/Negative " on the FISH Test. Many >Hematologists & Oncologists say that 300 or below is not beneficial to our >survival or our becoming 'resistant'. I cannot stress enough that as we are >all statistics. . .we are also individuals in our survival. My age, weight, > & overall health made it impossible for me to tolerate 600 or 800 at the >beginning. . .I went through H**l with side effects as my body adjusted to >the gold. My body also didn't tolerate 400 m.g. until a year ago. > I don't know your age, weight or overall health, and your H/O may be a >Newbie to this also. Therefore; Relax & Enjoy your new life as a survivor, >arm yourself with information and get support from the group, and remember >'too much information in some cases may be more detrimental--than not >enough information'. > Take care, I have All in my prayers. > > > " K " > " I AIN'T FINISHED YET " !!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Dear , It was really interesting hearing your husband's story. We are kind of in the same boat. If you don't mind my asking how low were his neutrophils when he was hospitalized? Were all his counts low or just neuts? Did he ever use growth factors and if so which ones? Sorry for all the questions but your situation seems very similar to my husbands. Coralee Wife of Cam Dx June 2006 On Jan 17, 2007, at 1:03 PM, Cervera wrote: > " I Aint Finished Yet " and all--- > I am soooooooooo glad you wrote this email---it is important to > remember > that of course there are certain " rules of thumb " when treating CML > and any > disease for that matter--but--ultimately---we are all human beings > and all > respond differently! My husband was diagnosed July of 2006. He was > on 600mg > of Gleevec, could not tolerate it, then went to 500. He then became > severly > neutropenic and was hospitalized for 1 month and taken off Gleevec. > It was > resumed at 200mg and quickly went up to 300--where he stayed for > about 1.5 > months while his numbers steadly increased. He has now been back on > 400mg > for about 2 weeks now, and doing well. But--who knows...maybe in > another > couple weeks they will realize 300mg is his " magic " doseage. We, > too, (along > with his doc that we really like), know that 400mg is optimal > doseage---for > MOST people. But, is an individual and his doctor has to treat > him that > way, using her knowledge in treating other patients, of course, but > responding to 's body and what his body is telling her to do. > We live in > the Los Angeles area and are lucky to have had access to some very > good > doctors, many of whom are out of the City of Hope Cancer Center, > and many of > whom were involved in the trials of Gleevec. But, even they were > differering > in opinions when it came to my husband's neutropenia and whether or > not to > take him off Gleevec, reduce it, give him WBC boosters, put him on > a bone > marrow transplant list, etc. > > I feel like the more posts I read on this forum, the more " scared " > I get > about my husband's future. But--then I remind myself that what > might be the > " norm " for most people with CML, might not work for him. I am glad > to know > that " I Aint Finished Yet " has achieved a 0/Negative " on the FISH > Test with > only being on 300mg...thanks for sharing! > > Weez > > >> From: IAintFinishedYet <kttweety@...> >> Reply- >> >> Subject: Re: [ ] Digest Number 602 >> Date: Wed, 17 Jan 2007 04:44:12 -0800 (PST) >> >> Hey Cam: >> 4 years ago when I was where you are now in your survival; I had >> to: 1) >> fire my diagnosing Oncologist; #2) educate myself with information >> from my >> sister & brother survivors who were 'in the know', and #3 >> communicate with >> my current Oncologist. I was hospitalized many times, given Procrit >> injections, adjustments of dosage from 200-600 m.g. and finally >> 300 m.g. >> proved to be my niche to reach " 0/Negative " on the FISH Test. Many >> Hematologists & Oncologists say that 300 or below is not >> beneficial to our >> survival or our becoming 'resistant'. I cannot stress enough that >> as we are >> all statistics. . .we are also individuals in our survival. My >> age, weight, >> & overall health made it impossible for me to tolerate 600 or 800 >> at the >> beginning. . .I went through H**l with side effects as my body >> adjusted to >> the gold. My body also didn't tolerate 400 m.g. until a year ago. >> I don't know your age, weight or overall health, and your H/O >> may be a >> Newbie to this also. Therefore; Relax & Enjoy your new life as a >> survivor, >> arm yourself with information and get support from the group, and >> remember >> 'too much information in some cases may be more detrimental--than not >> enough information'. >> Take care, I have All in my prayers. >> >> >> " K " >> " I AIN'T FINISHED YET " !!! >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 Hi Weez, There have been several members of this group who have responded well to 300mg of Gleevec. If you read the articles I posted, you'll see that it is doses of LESS THAN 300mg that are not recommended by the experts. I am of the opinion that knowledge is power and the more you know, the better you are equipped to deal with any situation. I know of a patient who was taking their Gleevec when they felt like it, which was about once a week, almost as if it was a drug for arthritis. If she felt well, she thought she didn't need the drug, she had no idea that she was supposed to take it everyday and she also didn't know that what she was doing was dangerous. This group serves more than one function which may or may not meet everyone's needs. We try to educate patients on the various aspects of living with CML, and we offer emotional support to those who want it. When people ask questions, someone usually tries to answer them but I guess in doing so, other patients could become scared of the answers. I have found though that the more I learned, the less scared I was because I understood what was going on and I made a plan to deal with it. Not knowing what to do and not knowing what was going on, was far more frightening than knowing and having a plan of action. Take care, Tracey > > " I Aint Finished Yet " and all--- > I am soooooooooo glad you wrote this email---it is important to remember > that of course there are certain " rules of thumb " when treating CML and any > disease for that matter--but--ultimately---we are all human beings and all > respond differently! My husband was diagnosed July of 2006. He was on 600mg > of Gleevec, could not tolerate it, then went to 500. He then became severly > neutropenic and was hospitalized for 1 month and taken off Gleevec. It was > resumed at 200mg and quickly went up to 300--where he stayed for about 1.5 > months while his numbers steadly increased. He has now been back on 400mg > for about 2 weeks now, and doing well. But--who knows...maybe in another > couple weeks they will realize 300mg is his " magic " doseage. We, too, (along > with his doc that we really like), know that 400mg is optimal doseage---for > MOST people. But, is an individual and his doctor has to treat him that > way, using her knowledge in treating other patients, of course, but > responding to 's body and what his body is telling her to do. We live in > the Los Angeles area and are lucky to have had access to some very good > doctors, many of whom are out of the City of Hope Cancer Center, and many of > whom were involved in the trials of Gleevec. But, even they were differering > in opinions when it came to my husband's neutropenia and whether or not to > take him off Gleevec, reduce it, give him WBC boosters, put him on a bone > marrow transplant list, etc. > > I feel like the more posts I read on this forum, the more " scared " I get > about my husband's future. But--then I remind myself that what might be the > " norm " for most people with CML, might not work for him. I am glad to know > that " I Aint Finished Yet " has achieved a 0/Negative " on the FISH Test with > only being on 300mg...thanks for sharing! > > Weez > > > >From: IAintFinishedYet <kttweety@...> > >Reply- > > > >Subject: Re: [ ] Digest Number 602 > >Date: Wed, 17 Jan 2007 04:44:12 -0800 (PST) > > > >Hey Cam: > > 4 years ago when I was where you are now in your survival; I had to: 1) > >fire my diagnosing Oncologist; #2) educate myself with information from my > >sister & brother survivors who were 'in the know', and #3 communicate with > >my current Oncologist. I was hospitalized many times, given Procrit > >injections, adjustments of dosage from 200-600 m.g. and finally 300 m.g. > >proved to be my niche to reach " 0/Negative " on the FISH Test. Many > >Hematologists & Oncologists say that 300 or below is not beneficial to our > >survival or our becoming 'resistant'. I cannot stress enough that as we are > >all statistics. . .we are also individuals in our survival. My age, weight, > > & overall health made it impossible for me to tolerate 600 or 800 at the > >beginning. . .I went through H**l with side effects as my body adjusted to > >the gold. My body also didn't tolerate 400 m.g. until a year ago. > > I don't know your age, weight or overall health, and your H/O may be a > >Newbie to this also. Therefore; Relax & Enjoy your new life as a survivor, > >arm yourself with information and get support from the group, and remember > >'too much information in some cases may be more detrimental--than not > >enough information'. > > Take care, I have All in my prayers. > > > > > > " K " > > " I AIN'T FINISHED YET " !!! > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 I will get all the info to you in the next day or so--I have so many numbers, etc. floating in my head from that time. My husband knows ALL of it--though is not a member of this forum--ironically, me, the worried wife is a member! He feels really good most days and feels he doesnt need to focus so much on CML...he needs to be educated, yes, but dwell on it, no. Is that how your husband is?! They tried everything to boost his counts while in the hospital--I am sure of neupogen, and I will get you the name of the other one as well. Basically, his doctor (she has about 8 patients on Gleevec), really felt that it was a matter of TIME before his counts went back up.....something did not want to hear after being in the hospital for weeks with no end in sight, and his counts remaning low. He had severe fevers for about 10 days--that usually spiked to 103 - 103.5. He had no immune system and was in isolation, and through all of it baffled his docs because for the mosat part, he felt pretty good. His onc explained how Gleevec is such a " wonder drug " because it only targets the cancerous cells...where as chemo, radiation and other forms of treatment actually cant differentiate between " good " (healthy) cells and " bad " (cancerous) cells. When my husband was diagnosed with CML, his WBC was 449,000--off the charts. His doc (whom, I might add is our second oncologist--first one had no experience with CML and had horrible bedside manners), explained that she believes his counts got completely wiped out because the majority of his cells were cancerous...and...that is what Gleevec targets. So, because most of his cells were cancerous, Gleevec was killing off those cells...leaving him not many healthy cells. Makes sense. So--she kept explaining that we need to give it time for his cells to regenerate. He was off Gleevec for 1 month, and they slowly slowly got him back on it. I wrote to Dr. Druker during that time (he invented Gleevec), and he was quick to say: " STAY ON GLEEVEC and if need be, take WBC boosters. " Druker did not think it was a good idea to be off of Gleevec at all...we mentioned this to my husband's onc, but ultimately we let her treat my husband since he was HER patient and not Dr. Druker's....she knows his entire history! All in all, this is a " touch and go " situation. My husband's onc checks his blood counts weekly and has for 4 months now. Just this week she said " lets wait 2 weeks to check it out...and then hopefully once we 'stabilize', we can go a month, and then longer. " But, it is better safe than sorry, so my husband went for his weekly blood draw today. I am at work, and dont know the results yet---so who knows...maybe his counts have dropped a little. I might add that the only reason we found out had CML was because he was having numbness on the left side of his mouth and a little in his left hand--that is what got us to the ER. After tests it was revealed that at the age of 33, he had suffered a stroke because of a blood clot in his brain all due to CML. SCARY SCARY summer last year---he had to undergo 3 emergency brain surgeries, leukopherysis treatments, was on hydrea, then started Gleevec. And--to complicate things more--I was still on maternity leave because our first child was only 2 months old when all of this happened...in a matter of one week I went from a happy new mom, to a stress case who was staring single-motherhood straight in the face with a husband who was in the ICU. I believe that everything happens for a reason...and we have gone through some rough times with CML (and brain surgery that he almost did not make it through)...but we have learned tons about this disease and life in general...so out of bad, good things happened. I have also learned to not get all caught up in the NUMBERS. Healthy people's counts fluctuate all the time, also...so if one week 's counts are lower than another week...I used to freak out. But now, I take each day one day at a time, I pray alot, and I thank God each day for my husband, my son, and the doctors and scientists who have created such amazing drugs. Hang in there and I will email you 's numbers when I have the specifics in front of me. Regards, (aka Weez) >From: coralee williams <coralee.williams@...> >Reply- > >Subject: Re: [ ] Digest Number 602 >Date: Wed, 17 Jan 2007 14:01:21 -0700 > >Dear , > >It was really interesting hearing your husband's story. We are kind >of in the same boat. If you don't mind my asking how low were his >neutrophils when he was hospitalized? Were all his counts low or just >neuts? Did he ever use growth factors and if so which ones? Sorry for >all the questions but your situation seems very similar to my husbands. > >Coralee >Wife of Cam >Dx June 2006 > >On Jan 17, 2007, at 1:03 PM, Cervera wrote: > > > " I Aint Finished Yet " and all--- > > I am soooooooooo glad you wrote this email---it is important to > > remember > > that of course there are certain " rules of thumb " when treating CML > > and any > > disease for that matter--but--ultimately---we are all human beings > > and all > > respond differently! My husband was diagnosed July of 2006. He was > > on 600mg > > of Gleevec, could not tolerate it, then went to 500. He then became > > severly > > neutropenic and was hospitalized for 1 month and taken off Gleevec. > > It was > > resumed at 200mg and quickly went up to 300--where he stayed for > > about 1.5 > > months while his numbers steadly increased. He has now been back on > > 400mg > > for about 2 weeks now, and doing well. But--who knows...maybe in > > another > > couple weeks they will realize 300mg is his " magic " doseage. We, > > too, (along > > with his doc that we really like), know that 400mg is optimal > > doseage---for > > MOST people. But, is an individual and his doctor has to treat > > him that > > way, using her knowledge in treating other patients, of course, but > > responding to 's body and what his body is telling her to do. > > We live in > > the Los Angeles area and are lucky to have had access to some very > > good > > doctors, many of whom are out of the City of Hope Cancer Center, > > and many of > > whom were involved in the trials of Gleevec. But, even they were > > differering > > in opinions when it came to my husband's neutropenia and whether or > > not to > > take him off Gleevec, reduce it, give him WBC boosters, put him on > > a bone > > marrow transplant list, etc. > > > > I feel like the more posts I read on this forum, the more " scared " > > I get > > about my husband's future. But--then I remind myself that what > > might be the > > " norm " for most people with CML, might not work for him. I am glad > > to know > > that " I Aint Finished Yet " has achieved a 0/Negative " on the FISH > > Test with > > only being on 300mg...thanks for sharing! > > > > Weez > > > > > >> From: IAintFinishedYet <kttweety@...> > >> Reply- > >> > >> Subject: Re: [ ] Digest Number 602 > >> Date: Wed, 17 Jan 2007 04:44:12 -0800 (PST) > >> > >> Hey Cam: > >> 4 years ago when I was where you are now in your survival; I had > >> to: 1) > >> fire my diagnosing Oncologist; #2) educate myself with information > >> from my > >> sister & brother survivors who were 'in the know', and #3 > >> communicate with > >> my current Oncologist. I was hospitalized many times, given Procrit > >> injections, adjustments of dosage from 200-600 m.g. and finally > >> 300 m.g. > >> proved to be my niche to reach " 0/Negative " on the FISH Test. Many > >> Hematologists & Oncologists say that 300 or below is not > >> beneficial to our > >> survival or our becoming 'resistant'. I cannot stress enough that > >> as we are > >> all statistics. . .we are also individuals in our survival. My > >> age, weight, > >> & overall health made it impossible for me to tolerate 600 or 800 > >> at the > >> beginning. . .I went through H**l with side effects as my body > >> adjusted to > >> the gold. My body also didn't tolerate 400 m.g. until a year ago. > >> I don't know your age, weight or overall health, and your H/O > >> may be a > >> Newbie to this also. Therefore; Relax & Enjoy your new life as a > >> survivor, > >> arm yourself with information and get support from the group, and > >> remember > >> 'too much information in some cases may be more detrimental--than not > >> enough information'. > >> Take care, I have All in my prayers. > >> > >> > >> " K " > >> " I AIN'T FINISHED YET " !!! > >> > >> > >> > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 17, 2007 Report Share Posted January 17, 2007 -- I agree that knowledge is power, I am getting less and less scared the more I know--you are correct. In fact, after I posted that message, I realized exactly what you are saying. Some days it seems like posts are all " down " , and other days they might be all positive. Mostly, I just feel so horribly bad for those who, unlike my husband, are not having good outcomes with Gleevec, and I get scared for the " newbies " out there who might be scared like I was. I truly can say that although it has only been 6 short months of living with CML in my family...we have learned TONS---thanks to this forum and all the info out there, and our docs that we really like and trust. We also have gotten less and less scared about the disease, and hope that all the newbies out there arm themselves with information, and realize we are living in an AMAZING time to have a disease like this---medical advances and technology are happening at such a rapid rate that who knows...in a few short years maybe there will be a CURE. Take care! Weez >From: " Tracey " <traceyincanada@...> >Reply- > >Subject: Re: [ ] Digest Number 602 >Date: Wed, 17 Jan 2007 21:37:32 -0000 > >Hi Weez, > >There have been several members of this group who have responded well >to 300mg of Gleevec. If you read the articles I posted, you'll see >that it is doses of LESS THAN 300mg that are not recommended by the >experts. > >I am of the opinion that knowledge is power and the more you know, >the better you are equipped to deal with any situation. I know of a >patient who was taking their Gleevec when they felt like it, which >was about once a week, almost as if it was a drug for arthritis. If >she felt well, she thought she didn't need the drug, she had no idea >that she was supposed to take it everyday and she also didn't know >that what she was doing was dangerous. > >This group serves more than one function which may or may not meet >everyone's needs. We try to educate patients on the various aspects >of living with CML, and we offer emotional support to those who want >it. When people ask questions, someone usually tries to answer them >but I guess in doing so, other patients could become scared of the >answers. I have found though that the more I learned, the less >scared I was because I understood what was going on and I made a plan >to deal with it. Not knowing what to do and not knowing what was >going on, was far more frightening than knowing and having a plan of >action. > >Take care, >Tracey > > > > > > > " I Aint Finished Yet " and all--- > > I am soooooooooo glad you wrote this email---it is important to >remember > > that of course there are certain " rules of thumb " when treating CML >and any > > disease for that matter--but--ultimately---we are all human beings >and all > > respond differently! My husband was diagnosed July of 2006. He was >on 600mg > > of Gleevec, could not tolerate it, then went to 500. He then became >severly > > neutropenic and was hospitalized for 1 month and taken off Gleevec. >It was > > resumed at 200mg and quickly went up to 300--where he stayed for >about 1.5 > > months while his numbers steadly increased. He has now been back on >400mg > > for about 2 weeks now, and doing well. But--who knows...maybe in >another > > couple weeks they will realize 300mg is his " magic " doseage. We, >too, (along > > with his doc that we really like), know that 400mg is optimal >doseage---for > > MOST people. But, is an individual and his doctor has to treat >him that > > way, using her knowledge in treating other patients, of course, but > > responding to 's body and what his body is telling her to do. >We live in > > the Los Angeles area and are lucky to have had access to some very >good > > doctors, many of whom are out of the City of Hope Cancer Center, >and many of > > whom were involved in the trials of Gleevec. But, even they were >differering > > in opinions when it came to my husband's neutropenia and whether or >not to > > take him off Gleevec, reduce it, give him WBC boosters, put him on >a bone > > marrow transplant list, etc. > > > > I feel like the more posts I read on this forum, the more " scared " >I get > > about my husband's future. But--then I remind myself that what >might be the > > " norm " for most people with CML, might not work for him. I am glad >to know > > that " I Aint Finished Yet " has achieved a 0/Negative " on the FISH >Test with > > only being on 300mg...thanks for sharing! > > > > Weez > > > > > > >From: IAintFinishedYet <kttweety@...> > > >Reply- > > > > > >Subject: Re: [ ] Digest Number 602 > > >Date: Wed, 17 Jan 2007 04:44:12 -0800 (PST) > > > > > >Hey Cam: > > > 4 years ago when I was where you are now in your survival; I >had to: 1) > > >fire my diagnosing Oncologist; #2) educate myself with information >from my > > >sister & brother survivors who were 'in the know', and #3 >communicate with > > >my current Oncologist. I was hospitalized many times, given >Procrit > > >injections, adjustments of dosage from 200-600 m.g. and finally >300 m.g. > > >proved to be my niche to reach " 0/Negative " on the FISH Test. Many > > >Hematologists & Oncologists say that 300 or below is not >beneficial to our > > >survival or our becoming 'resistant'. I cannot stress enough that >as we are > > >all statistics. . .we are also individuals in our survival. My >age, weight, > > > & overall health made it impossible for me to tolerate 600 or 800 >at the > > >beginning. . .I went through H**l with side effects as my body >adjusted to > > >the gold. My body also didn't tolerate 400 m.g. until a year ago. > > > I don't know your age, weight or overall health, and your H/O >may be a > > >Newbie to this also. Therefore; Relax & Enjoy your new life as a >survivor, > > >arm yourself with information and get support from the group, and >remember > > >'too much information in some cases may be more detrimental--than >not > > >enough information'. > > > Take care, I have All in my prayers. > > > > > > > > > " K " > > > " I AIN'T FINISHED YET " !!! > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 18, 2007 Report Share Posted January 18, 2007 At 10:18 PM 1/17/07 +0000, you wrote: > " STAY ON GLEEVEC and if >need be, take WBC boosters. " Druker did not think it was a good idea to be >off of Gleevec at all...we mentioned this to my husband's onc, but >ultimately we let her treat my husband since he was HER patient and not Dr. >Druker's....she knows his entire history! Sorry, this does not make a lot of sense. There are a handful of very top CML specialists in the country....like Drs. Druker, Talpaz, others at MDACC and some other good facilities. Dr. Druker has treated hundreds of patients on Gleevec......so I would put what he said above what a local onc. who has a handful of patients 'thinks'. It is true that he did not have the full history of your husband, but he does know how to deal with side effects from Gleevec. Also, you are in a partnership with your doctor.....you have 'hired them'........I would not allow myself to be labeled " his or her' patient!........ that's my 2-cents about the situation. C. Quote Link to comment Share on other sites More sharing options...
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