Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Sue, You did menetion a few more things here that I did not mention.I do have the skin rash,blotches,welts type things,skin is several shades lighter(ghost like).Female issues so I had an tubal and Abdlation to help with those issues and It has helped some(have't had an Iron Infusion since Jan.Hair was thinning so much I cut it off short.I am now graying(could be age am 41 now)never had grey before but hey age...Hair texture is different as well,NOt as curly.Lactose intolerant as well.No vomiting(haven't been able to physically vomit since my RNY surgery in 2001)A real issue when you get food poisoning..I get the eye,face and hand swelling(along with Abdomin look 5 months preggo)weight gain and loss of 10 pounds on a weekly basis Monday I weigh 139 fri 149.Frustrating but not a true fat weight gain.Fatigue,pain swelling everyday.Very little physical activity.In bed living on Narcotics.. How do you work through these issues? I take more meds to help with the issues but the haven't gotten any better but it is just now going on a year in May.Maybe another year f this and I will be able to get out of bed and function in society.There are no Specialists near me.I can't make the several hour drive to where there might be one(UCLA maybe?).Dr. wants to give a sufficient amount of time with gleevec to see if things improve with symptoms as others here have suggested(things get better w/time)So I am waiting.The more meds I take to treat the side effects the more issues I develope.So what are the steps that others here do to manage the side effects?I see the word manage and think there is something I could/shoud be doing to MAnage my side effects because right now they are managing me.. Any tips?Specific? Thanks SharonS - In , " Sue " <hollie@...> wrote: > > Sharon > > I wholeheartedly agree with Marcos > > Early stages of treatment - 600mg > > I have had huge side effects even from early dose of 200mg to settle me in - but step at a time and you get thru. > > Skin related: Hives, welts, ring worm type rash - perhaps a psorisis - shingles - multiple episodes, water blisters, > a doosey of a blood blister rash, other undefined weird looking rashes and marks that come out of nowhere > > Skin getter paler - so I will be one of those people that you can say is a ghost that walks - sun intolerant these days. > > Hair - did not grow quickly - but did not fall out as I have heard a few people have this issue - > quite thin - but lately getting thicker and believe it or not curly not just wavy. > > Lactose Intolerant type: Had to learn to eat around glivec medication > > Vomiting - Big " D " - (now gone - that was at least the first year every couple of days) > > Odeama's - eyes, face - fingers, tops of feet > > Weight Gain dramatic - weight loss dramatic > > Fatiqued - from sleeping like sleeping beauty - a bomb could of gone off to days of rest for hours at a time to now one day a week perhaps. > Could not exercise , could not walk up steps or really walk a street lenght at all. Amazing like little things you think you are walking fast > but as people walk past you - you realise you aren't - now walking back to normal. > > Pain - bone pain, bone ache, muscle ache, like Marcos at times could not walk without pain but you work thru that. Worse was the lower spinal pain, and deep inner > hip pain and other times there has been aches along the long bones and stuff like collar bones. Terrible chin soreness and tops of feet that I wore > thongs and bare feet at work. > > Hormone issues - Yes the Famous Bleed-out - that was really just a dramatic attention seeking moment - radical hysterectomy - then infusions, transfusions, > > Eyes - Vision problems at times > > That was over first 18 months and nearing my two year anniversary: > > Now PCRU - Yeh!! Zero Club No 1197 Yeh !! That does not mean that you do not get side effects or your general chemisty is not affected. > > But like Marcos - it gets better - Unlike Marcos I don't think I could climb a mountain or deep sea dive - but I do not ride my horses anymore > but I can work them on the ground - have controlled exercise - just started gym - CURVES - I think you have curves over there - 30 minute work-out for the girls > - walk my dog and work the property. > > and Sharon you can work thru the issues - one at a time - you seek support and become your own health advocate > > My suggestion is to gather good medical people around you and seek a CML Specialist second opinion to make good decisions on your treatment plan. > > Sue (Aussie) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 I have these issues as well but am 41.So is DOB the issue in my case also?lol..I have terrible bruises all over.I get bruises from my insulin needle even..lol SharonS In , " Sue " <hollie@...> wrote: > > Read s next side effect info > > Even though PCRU I have also > > developed fragile skin, > bleed very easily > and bruise extremely well. All I had to do was bump lightly into an object ........... > > Thanks - another side effect that I know is a glivec reaction - thought it maybe from some other condition known as DOB (date of birth) > > Cheers > Sue (Aussie) > > Sharon: > > > Sharon > > I wholeheartedly agree with Marcos > > Early stages of treatment - 600mg > > I have had huge side effects even from early dose of 200mg to settle me in - but step at a time and you get thru. > > Skin related: Hives, welts, ring worm type rash - perhaps a psorisis - shingles - multiple episodes, water blisters, > a doosey of a blood blister rash, other undefined weird looking rashes and marks that come out of nowhere > > Skin getter paler - so I will be one of those people that you can say is a ghost that walks - sun intolerant these days. > > Hair - did not grow quickly - but did not fall out as I have heard a few people have this issue - > quite thin - but lately getting thicker and believe it or not curly not just wavy. > > Lactose Intolerant type: Had to learn to eat around glivec medication > > Vomiting - Big " D " - (now gone - that was at least the first year every couple of days) > > Odeama's - eyes, face - fingers, tops of feet > > Weight Gain dramatic - weight loss dramatic > > Fatiqued - from sleeping like sleeping beauty - a bomb could of gone off to days of rest for hours at a time to now one day a week perhaps. > Could not exercise , could not walk up steps or really walk a street lenght at all. Amazing like little things you think you are walking fast > but as people walk past you - you realise you aren't - now walking back to normal. > > Pain - bone pain, bone ache, muscle ache, like Marcos at times could not walk without pain but you work thru that. Worse was the lower spinal pain, and deep inner > hip pain and other times there has been aches along the long bones and stuff like collar bones. Terrible chin soreness and tops of feet that I wore > thongs and bare feet at work. > > Hormone issues - Yes the Famous Bleed-out - that was really just a dramatic attention seeking moment - radical hysterectomy - then infusions, transfusions, > > Eyes - Vision problems at times > > That was over first 18 months and nearing my two year anniversary: > > Now PCRU - Yeh!! Zero Club No 1197 Yeh !! That does not mean that you do not get side effects or your general chemisty is not affected. > > But like Marcos - it gets better - Unlike Marcos I don't think I could climb a mountain or deep sea dive - but I do not ride my horses anymore > but I can work them on the ground - have controlled exercise - just started gym - CURVES - I think you have curves over there - 30 minute work-out for the girls > - walk my dog and work the property. > > and Sharon you can work thru the issues - one at a time - you seek support and become your own health advocate > > My suggestion is to gather good medical people around you and seek a CML Specialist second opinion to make good decisions on your treatment plan. > > Sue (Aussie) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 , I live in mond,Ca.It is a couple hours north of Los Angeles,Ca. SharonS In , Rosen Lum <rrosenlum@...> wrote: > > > Sharon, whereabouts do you live? Answer offline if you prefer. The nurse practitioner who co-facilitates the leukemia lymphoma support group I attend is very well connected and seems to know everyone who treats this illness of ours with skill and talent -- I'd love to see you get the expert attention you deserve. > > in the S.F. Bay Area > > > From: serenitywon@... > Date: Mon, 27 Apr 2009 16:56:28 +0000 > Subject: [ ] Re: Sharon: > > > > > > > > > > > > > > > > > > > > > > > > > > > Sue, > > You did menetion a few more things here that I did not mention.I do have the skin rash,blotches,welts type things,skin is several shades lighter(ghost like).Female issues so I had an tubal and Abdlation to help with those issues and It has helped some(have't had an Iron Infusion since Jan.Hair was thinning so much I cut it off short.I am now graying(could be age am 41 now)never had grey before but hey age...Hair texture is different as well,NOt as curly.Lactose intolerant as well.No vomiting(haven't been able to physically vomit since my RNY surgery in 2001)A real issue when you get food poisoning..I get the eye,face and hand swelling(along with Abdomin look 5 months preggo)weight gain and loss of 10 pounds on a weekly basis Monday I weigh 139 fri 149.Frustrating but not a true fat weight gain.Fatigue,pain swelling everyday.Very little physical activity.In bed living on Narcotics.. > > > > How do you work through these issues? I take more meds to help with the issues but the haven't gotten any better but it is just now going on a year in May.Maybe another year f this and I will be able to get out of bed and function in society.There are no Specialists near me.I can't make the several hour drive to where there might be one(UCLA maybe?).Dr. wants to give a sufficient amount of time with gleevec to see if things improve with symptoms as others here have suggested(things get better w/time)So I am waiting.The more meds I take to treat the side effects the more issues I develope.So what are the steps that others here do to manage the side effects?I see the word manage and think there is something I could/shoud be doing to MAnage my side effects because right now they are managing me.. > > > > Any tips?Specific? > > Thanks > > SharonS > > > > - In , " Sue " <hollie@> wrote: > > > > > > Sharon > > > > > > I wholeheartedly agree with Marcos > > > > > > Early stages of treatment - 600mg > > > > > > I have had huge side effects even from early dose of 200mg to settle me in - but step at a time and you get thru. > > > > > > Skin related: Hives, welts, ring worm type rash - perhaps a psorisis - shingles - multiple episodes, water blisters, > > > a doosey of a blood blister rash, other undefined weird looking rashes and marks that come out of nowhere > > > > > > Skin getter paler - so I will be one of those people that you can say is a ghost that walks - sun intolerant these days. > > > > > > Hair - did not grow quickly - but did not fall out as I have heard a few people have this issue - > > > quite thin - but lately getting thicker and believe it or not curly not just wavy. > > > > > > Lactose Intolerant type: Had to learn to eat around glivec medication > > > > > > Vomiting - Big " D " - (now gone - that was at least the first year every couple of days) > > > > > > Odeama's - eyes, face - fingers, tops of feet > > > > > > Weight Gain dramatic - weight loss dramatic > > > > > > Fatiqued - from sleeping like sleeping beauty - a bomb could of gone off to days of rest for hours at a time to now one day a week perhaps. > > > Could not exercise , could not walk up steps or really walk a street lenght at all. Amazing like little things you think you are walking fast > > > but as people walk past you - you realise you aren't - now walking back to normal. > > > > > > Pain - bone pain, bone ache, muscle ache, like Marcos at times could not walk without pain but you work thru that. Worse was the lower spinal pain, and deep inner > > > hip pain and other times there has been aches along the long bones and stuff like collar bones. Terrible chin soreness and tops of feet that I wore > > > thongs and bare feet at work. > > > > > > Hormone issues - Yes the Famous Bleed-out - that was really just a dramatic attention seeking moment - radical hysterectomy - then infusions, transfusions, > > > > > > Eyes - Vision problems at times > > > > > > That was over first 18 months and nearing my two year anniversary: > > > > > > Now PCRU - Yeh!! Zero Club No 1197 Yeh !! That does not mean that you do not get side effects or your general chemisty is not affected. > > > > > > But like Marcos - it gets better - Unlike Marcos I don't think I could climb a mountain or deep sea dive - but I do not ride my horses anymore > > > but I can work them on the ground - have controlled exercise - just started gym - CURVES - I think you have curves over there - 30 minute work-out for the girls > > > - walk my dog and work the property. > > > > > > and Sharon you can work thru the issues - one at a time - you seek support and become your own health advocate > > > > > > My suggestion is to gather good medical people around you and seek a CML Specialist second opinion to make good decisions on your treatment plan. > > > > > > Sue (Aussie) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 , I live in mond,Ca.It is a couple hours north of Los Angeles,Ca. SharonS In , Rosen Lum <rrosenlum@...> wrote: > > > Sharon, whereabouts do you live? Answer offline if you prefer. The nurse practitioner who co-facilitates the leukemia lymphoma support group I attend is very well connected and seems to know everyone who treats this illness of ours with skill and talent -- I'd love to see you get the expert attention you deserve. > > in the S.F. Bay Area > > > From: serenitywon@... > Date: Mon, 27 Apr 2009 16:56:28 +0000 > Subject: [ ] Re: Sharon: > > > > > > > > > > > > > > > > > > > > > > > > > > > Sue, > > You did menetion a few more things here that I did not mention.I do have the skin rash,blotches,welts type things,skin is several shades lighter(ghost like).Female issues so I had an tubal and Abdlation to help with those issues and It has helped some(have't had an Iron Infusion since Jan.Hair was thinning so much I cut it off short.I am now graying(could be age am 41 now)never had grey before but hey age...Hair texture is different as well,NOt as curly.Lactose intolerant as well.No vomiting(haven't been able to physically vomit since my RNY surgery in 2001)A real issue when you get food poisoning..I get the eye,face and hand swelling(along with Abdomin look 5 months preggo)weight gain and loss of 10 pounds on a weekly basis Monday I weigh 139 fri 149.Frustrating but not a true fat weight gain.Fatigue,pain swelling everyday.Very little physical activity.In bed living on Narcotics.. > > > > How do you work through these issues? I take more meds to help with the issues but the haven't gotten any better but it is just now going on a year in May.Maybe another year f this and I will be able to get out of bed and function in society.There are no Specialists near me.I can't make the several hour drive to where there might be one(UCLA maybe?).Dr. wants to give a sufficient amount of time with gleevec to see if things improve with symptoms as others here have suggested(things get better w/time)So I am waiting.The more meds I take to treat the side effects the more issues I develope.So what are the steps that others here do to manage the side effects?I see the word manage and think there is something I could/shoud be doing to MAnage my side effects because right now they are managing me.. > > > > Any tips?Specific? > > Thanks > > SharonS > > > > - In , " Sue " <hollie@> wrote: > > > > > > Sharon > > > > > > I wholeheartedly agree with Marcos > > > > > > Early stages of treatment - 600mg > > > > > > I have had huge side effects even from early dose of 200mg to settle me in - but step at a time and you get thru. > > > > > > Skin related: Hives, welts, ring worm type rash - perhaps a psorisis - shingles - multiple episodes, water blisters, > > > a doosey of a blood blister rash, other undefined weird looking rashes and marks that come out of nowhere > > > > > > Skin getter paler - so I will be one of those people that you can say is a ghost that walks - sun intolerant these days. > > > > > > Hair - did not grow quickly - but did not fall out as I have heard a few people have this issue - > > > quite thin - but lately getting thicker and believe it or not curly not just wavy. > > > > > > Lactose Intolerant type: Had to learn to eat around glivec medication > > > > > > Vomiting - Big " D " - (now gone - that was at least the first year every couple of days) > > > > > > Odeama's - eyes, face - fingers, tops of feet > > > > > > Weight Gain dramatic - weight loss dramatic > > > > > > Fatiqued - from sleeping like sleeping beauty - a bomb could of gone off to days of rest for hours at a time to now one day a week perhaps. > > > Could not exercise , could not walk up steps or really walk a street lenght at all. Amazing like little things you think you are walking fast > > > but as people walk past you - you realise you aren't - now walking back to normal. > > > > > > Pain - bone pain, bone ache, muscle ache, like Marcos at times could not walk without pain but you work thru that. Worse was the lower spinal pain, and deep inner > > > hip pain and other times there has been aches along the long bones and stuff like collar bones. Terrible chin soreness and tops of feet that I wore > > > thongs and bare feet at work. > > > > > > Hormone issues - Yes the Famous Bleed-out - that was really just a dramatic attention seeking moment - radical hysterectomy - then infusions, transfusions, > > > > > > Eyes - Vision problems at times > > > > > > That was over first 18 months and nearing my two year anniversary: > > > > > > Now PCRU - Yeh!! Zero Club No 1197 Yeh !! That does not mean that you do not get side effects or your general chemisty is not affected. > > > > > > But like Marcos - it gets better - Unlike Marcos I don't think I could climb a mountain or deep sea dive - but I do not ride my horses anymore > > > but I can work them on the ground - have controlled exercise - just started gym - CURVES - I think you have curves over there - 30 minute work-out for the girls > > > - walk my dog and work the property. > > > > > > and Sharon you can work thru the issues - one at a time - you seek support and become your own health advocate > > > > > > My suggestion is to gather good medical people around you and seek a CML Specialist second opinion to make good decisions on your treatment plan. > > > > > > Sue (Aussie) > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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