HI Beth, All very interesting! Seems we were dx'd almost exactly 1 year apart. Sonce going back on Sprycel, I have been totally plagued with miserable back spasms; Baclofen does seem to help. I have also suffered greatly from sciatica and peripheral neuropathy ever since I was floxed by the antibiotic, Cipro.
Have I asked you whether or not you have taken the antibiotics Cipro, Levaquinn or Avelox? They are usually prescribed for Sinus infections, upper respiratory issues and UTI's. They have wreaked havoc on my body! And yes, I really do believe that absorption is key and from all of the response that I have received with similar isuues, I really am beginning to wonder, if over time, Sprycel may cause the low stomach acid, thus the low absorption, thus the increasing PCR. All pretty crazy stuff that doctors probably are not researching! We definitely need to stay in touch, Michele On Tue, Sep 17, 2013 at 5:15 PM, <[email protected]> wrote: > HI Michelle, I was diagnosed Feb 12, 2010. I did gleevec, then tasigna, > then sprycel since Nov 2010 until now..with a brief break in February/ > March of this year to try bosutinib which was not effective for me at the > dose I could tolerate. I was on sprycel at 50 for the first two years. I > took drug holidays briefly when I felt really bad, I went down to 40 a day > last year in October/ November and went off for 7 weeks beginning Dec., 5th > because I felt so horrible. Stayed off until Jan 28th....with that break I > came out of major mole. remission where I had stayed the whole > time....until going off the meds...it scared me how fast the cancer grew > off the meds..tried bosutinib,cancer got worse on it...so went back on > sprycel....did 70 for a month then 60 for two months...in PCRU for the > first time.....went down to 50 for 2 months, still in pcru..will do blood > work this week and see if holding remission....I had to go off meds for two > weeks to do back epiderals...am also getting ready to have a neck surgery, > remove C4 and C5...so off sprycel one week prior to surgery so I don't > bleed, then stay off while the body tries to heal initially from the > surgery...as sprycel can inhibit wound healing and change tissue structure > that is trying to heal...I will stay off as long as is safe, then return, > probably uptake at 70 again and titrate down once in complete remission. I > have a lumbar surgery to relieve sciatica that I have had for the last 17 > months that has disabled me physically.....but that surgery can only come > after the neck is taken care off....so..one thing at a time, I will write > and let people know when my surgery is so people can pray, those that do.. > I believe that all the positive energy sent in one direction really aids > healing...and I want the support. > > I am keeping my fingers crossed that you are really onto something...I > went and worked with an acupuncture person and NAET, who helped me to > absorb sprycel at 100% so I could take less of a dose to achieve a good > response. While I want that 'undetectable", I am learning that as long as > the meds keep us at very low levels of disease, it can stay that way > indefinately and people have better qualities of life.....so the goal for > many isn't complete remission....it's very low levels... and no pleural > effusions etc.... > > your journey is a hard road, your attitude is great, and we are kindred > spirits when it comes to > wanting to research everything and find no stone unturned.....along the > way I firmly believe we can help others...and as patients advocating for > ourselves and others, the discoveries we make can change the lives of > many....keep postig and letting us know how you are doing...I am pulling > for you... > > HI to all!!!!! > > Take good care, > > Warm regards, > > Beth > > -----Original Message----- > From: LearnToBallroomDanceOnline.com <[email protected]> > To: cmlhope <[email protected]>; bkbarney <[email protected]> > Sent: Tue, Sep 17, 2013 11:22 am > Subject: Re: [CMLHope] Taking a Poll! > > Hi Beth, > > Thanks so much for your kind response! Interesting that you also take > Apple cider Vinegar. > I am currently wondering if the Sprycel actually caused me to have low > stomach acid, as the first year I was on it I had a great response with > continual decreases in my PCR. > > It was the second year that the PCR began to increase, up until I > started the Vinegar theory! > I wonder if by you taking the vinegar all along, your stomach acid wasn't > affected. > > What is your dose of Sprycel and how long have you taken it? > > When were you dx'd? > > Thanks, > Michele > > > On Mon, Sep 16, 2013 at 5:29 PM, <[email protected]> wrote: > >> I just wanted to say that I so appreciate your posts Michele, and your >> beautiful family, and dancing...I think your vinegar theory is interesting. >> I have been taking apple cider vinegar, Braggs, as well as pill form to >> help alkalize my body.....maybe it is helping my CML...I have never taken >> it with sprycel for the acidity in the tummy issue, that is very >> interesting to me. There are also a few people who are trying to take >> sprycel with tumeric and have had a significant reduction in the cml >> numbers....tumeric follows the same pathways as sprycel does and may be not >> only an anti inflammatory, but enhances the effectiveness of the >> sprycel...I have not taken it myself yet...because my docs are concerned >> that it woudl enhance myside effect profile, as well as enhance the >> effectiveness of the drug....so howmuch sprycel to take....for each of our >> bodies is a good question...the least amount you can take to avoid >> toxicity, but the greatest amount to ensure a positive outcome and so that >> we don't become resistant to the drug....who knows? I think it's such an >> individual thing..truly....take good care, and keep us posted... warm >> regards, Beth >> >> >> -----Original Message----- >> From: LearnToBallroomDanceOnline.com <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Mon, Sep 16, 2013 5:40 pm >> Subject: Re: [CMLHope] Taking a Poll! >> >> I am actually taking Sprycel...I have ever taken Tasigna. >> >> >> On Mon, Sep 16, 2013 at 3:32 PM, Susan Zimmerman <[email protected]>wrote: >> >>> They are interesting and I did read them. But I don't know enuf about >>> tasigna to say what you should be doing! >>> >>> >>> >>> Susan F. Zimmerman >>> "Look among the nations and watch; be utterly astounded! For I will >>> work a work in your days which you would not believe, though it were told >>> you." Hab. 1:5 >>> >>> >>> -----Original Message----- >>> From: LearnToBallroomDanceOnline.com <[email protected]> >>> To: cmlhope <[email protected]> >>> Sent: Mon, Sep 16, 2013 4:06 pm >>> Subject: Re: [CMLHope] Taking a Poll! >>> >>> Sorry Susan, I guess you would have had to read previous posts, about >>> the PE, vinegar, increasing and decreasing PCR! >>> >>> http://www.leukemiasurvivor.co/2013/08/absorption-of-medication-could-this-be.html >>> http://www.leukemiasurvivor.co/2013/08/sucking-down-mothers.html >>> >>> http://www.leukemiasurvivor.co/2013/08/a-negative-pcr-really.html >>> >>> I have some interesting theories going on! >>> >>> Thanks, >>> >>> Michele >>> >>> >>> On Mon, Sep 16, 2013 at 1:40 PM, Susan Zimmerman <[email protected]>wrote: >>> >>>> I do not have enuf info to make a call on that at all.... >>>> >>>> >>>> Susan F. Zimmerman >>>> "Look among the nations and watch; be utterly astounded! For I will >>>> work a work in your days which you would not believe, though it were told >>>> you." Hab. 1:5 >>>> >>>> >>>> -----Original Message----- >>>> From: LearnToBallroomDanceOnline.com <[email protected]> >>>> To: cmlhope <[email protected]> >>>> Sent: Mon, Sep 16, 2013 3:36 pm >>>> Subject: [CMLHope] Taking a Poll! >>>> >>>> Hi All, >>>> So, I began taking Sprycel again after pleural effusion. Taking a poll >>>> of what YOU think my dosage should be! Here are the facts: http:// >>>> www.leukemiasurvivor.co/2013/09/back-on-sprycel-side-effects-re >>>> turn.html >>>> >>>> Thanks, hope you all are having a great day, >>>> Michele >>>> >>>> -- >>>> [email protected] >>>> www.LearntoBallroomDanceOnline.com<http://www.learntoballroomdanceonline.com/> >>>> -- >>>> -- >>>> [CMLHope] >>>> A support group of http://cmlhope.com >>>> ------------------------------------------------- >>>> >>>> You received this message because you are subscribed to the Google >>>> Groups "CMLHope" group. >>>> To post to this group, send email to [email protected] >>>> To unsubscribe from this group, send email to >>>> [email protected] >>>> For more options, visit this group at >>>> http://groups.google.com/group/CMLHope >>>> --- >>>> You received this message because you are subscribed to the Google >>>> Groups "CMLHope" group. >>>> To unsubscribe from this group and stop receiving emails from it, send >>>> an email to [email protected]. >>>> For more options, visit https://groups.google.com/groups/opt_out. >>>> -- >>>> -- >>>> [CMLHope] >>>> A support group of http://cmlhope.com >>>> ------------------------------------------------- >>>> >>>> You received this message because you are subscribed to the Google >>>> Groups "CMLHope" group. >>>> To post to this group, send email to [email protected] >>>> To unsubscribe from this group, send email to >>>> [email protected] >>>> For more options, visit this group at >>>> http://groups.google.com/group/CMLHope >>>> --- >>>> You received this message because you are subscribed to the Google >>>> Groups "CMLHope" group. >>>> To unsubscribe from this group and stop receiving emails from it, send >>>> an email to [email protected]. >>>> For more options, visit https://groups.google.com/groups/opt_out. >>>> >>> >>> >>> >>> -- >>> [email protected] >>> www.LearntoBallroomDanceOnline.com<http://www.learntoballroomdanceonline.com/> >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at >>> http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/groups/opt_out. >>> -- >>> -- >>> [CMLHope] >>> A support group of http://cmlhope.com >>> ------------------------------------------------- >>> >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To post to this group, send email to [email protected] >>> To unsubscribe from this group, send email to >>> [email protected] >>> For more options, visit this group at >>> http://groups.google.com/group/CMLHope >>> --- >>> You received this message because you are subscribed to the Google >>> Groups "CMLHope" group. >>> To unsubscribe from this group and stop receiving emails from it, send >>> an email to [email protected]. >>> For more options, visit https://groups.google.com/groups/opt_out. >>> >> >> >> >> -- >> [email protected] >> www.LearntoBallroomDanceOnline.com<http://www.learntoballroomdanceonline.com/> >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to [email protected]. >> For more options, visit https://groups.google.com/groups/opt_out. >> -- >> -- >> [CMLHope] >> A support group of http://cmlhope.com >> ------------------------------------------------- >> >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To post to this group, send email to [email protected] >> To unsubscribe from this group, send email to >> [email protected] >> For more options, visit this group at >> http://groups.google.com/group/CMLHope >> --- >> You received this message because you are subscribed to the Google Groups >> "CMLHope" group. >> To unsubscribe from this group and stop receiving emails from it, send an >> email to [email protected]. >> For more options, visit https://groups.google.com/groups/opt_out. >> > > > > -- > [email protected] > www.LearntoBallroomDanceOnline.com<http://www.learntoballroomdanceonline.com/> > -- [email protected] www.LearntoBallroomDanceOnline.com -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
