Guest guest Posted August 21, 2003 Report Share Posted August 21, 2003 Thank you Judi, you are a kind and understanding friend. Jan =^..^= mormar46 <mormar46@...> wrote:Hi there cat lady, I sure love your little kitty ears. I am a cat person myself, with a 15-year old Maine Coon who doesn't know he isn't a kitten. He inspires me. But then so do you. Geez, with all your problems you keep such a positive attitude (or is it " cattitude? " ) I admire what you've done for Richie--I know I would do the same for my grandkids if it were needed, but thankfully I don't think that will happen. My daughter and her husband are dedicated to each other and to their kids. They have weathered some tough times, and will surely have other tough times ahead. Duane is a cancer survivor--he had a malignant brain tumor 7 years ago--and he and met on line; Duane rescued from an abusive relationship. Life is a wonderful stew, and a stew wouldn't be the same without all the different ingredients. Some people put green peppers in their stew, and I don't like green peppers, but I'll eat their stew all the same because they made it. Thanks again for all you share with us, and please know that you are in my prayers too. Peace, Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2003 Report Share Posted November 29, 2003 Thanks so much, Tina - this was the best most informative article I've read in months. It really describes my condition. I started the cortisone today, to see if I feel better and if my thyroid meds act better - cause I've been increasing and increasing and not feeling any better. Jan > > > ADVERTISEMENT > > > > > > > from: SUGGESTIONS FOR AN APPROACH TO THE > > MANAGEMENT OF THYROID DEFICIENCY > > by Dr Barry J Durrant-Peatfield > > M.B., B.S., LR.C.P., M.RCS. > > > snip>>> > 5. Adrenal Insufficiency > > This might be more properly described as low adrenal reserve. Since > hypothyroidism adversely affects every cell, every tissue, and every > gland > in the body it is clear that the endocrine system as a whole will be > also > similarly affected. The adrenals will be subject firstly to lowered > efficiency resulting from a lowered vitality primary to > hypothyroidism, and > secondarily, to reduced ACTH stimulation from the pituitary. As a > result, in > general, patients with a protracted and/or severe hypothyroid state > will > have some degree of adrenal insufficiency. A significant level of > this will > be suspected in these situations: > > a. Longstanding and severe hypothyroidism. > > Episodes of extreme exhaustion, or collapse. > Bad response to minor illness. > . Multiple allergies. > Digestive problems - alternate diarrhea and constipation > Flatulence > Weight loss > Increasing arthralgia (fibromyalgia) and morning stiffness. > Pallor, yellow pigmentation (due to poorly metabolized carotene) > Fainting, dizziness > These patients often present with dark rings under their eyes, > looking quite > ill. Blood pressure is low, with a positive Raglan's sign. (Pressure > fails > to rise on standing). These symptoms and signs, it will be > appreciated, are > those of the early phases of 's Disease. > > A single estimation of blood Cortisol is usually unhelpful, but > De-hydroepiandrosterone sulphate (DHEA), the main hormone output from > the > adrenals, will be found to be low. Depressed levels in the endocrine > system > as a whole are likely to be found. The low adrenal reserve means > patients > are more or less well, until challenged by the stress of illness or > life > events--even the thyroid replacement therapy itself initially. And > this > partial failure will affect adversely T4-T3 conversion and the > integrity of > the thyroid receptors. > > It is essential to manage this insufficiency where present, or where > suspected. Remarkably, patients with symptoms, signs and blood > pathology of > low thyroid, may improve completely on management and correction of > the > adrenal problems alone; as conversion and receptor efficiency > improves, the > thyroid hormone circulating - partly unused - is brought into play. > > Adrenal insufficiency is dealt with by the provision of the two > hormones > most likely to be lacking; Cortisonehydrocortisone, and DHEA. (as > pointed > out above, low DHEA may be used to infer low cortisone output). The > treatment therefore, is the exhibition of, ideally, Hydrocortisone. > This > should be given in divided doses initially of 5mg qds; after a week, > 10 mg > qds may be used. This remains a physiological dose, not challenging or > suppressing the adrenal function, but supplementing it. In these > doses all > of the usual anxieties associated with cortisone do not apply, since > restoration of normality is being aimed at. > > This may need to be explained to patients long subject to media- > induced > fears of the horrors of corticosteroids (Their physicians may share > these > anxieties, unnecessarily). Dr McCormack Jeffries' papers on the > subject are > most worthy of study. DHEA has reached prominence in recent times as a > hormone of multiple, and magic properties. Certain it is that the > adrenals > secrete more DHEA than anything else, and the amount is inversely > proportional to age. It is metabolized to oestrogen and/or > testosterone, but > also has been shown to play a role in reducing obesity; in reducing > atherosclerosis and cholesterol; it inhibits the glucose -6- > dehydrogenase > enzyme in cancer; it improves immune response, and, possibly, acts as > a > neural facilitator. In physiological doses, there seems to be no > problem in > its long-term use. If levels are demonstrably low, it is reasonable to > provide replacement therapy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2003 Report Share Posted November 30, 2003 I have been going over all my old info when I read this and remembered you and the betacarotene problem that you have. It's a good idea for all of us to know what specific problems some of us have--this way it just triggers our memory to something we read somewhere. right now I am trying to help a friend whose family has depression big time--I told him to look into the thyroid/adrenal just to be sure this is not what they really have going on. You just never know??? Glad it could help---tina > > > > > > ADVERTISEMENT > > > > > > > > > > > > > > from: SUGGESTIONS FOR AN APPROACH TO THE > > > > MANAGEMENT OF THYROID DEFICIENCY > > > > by Dr Barry J Durrant-Peatfield > > > > M.B., B.S., LR.C.P., M.RCS. > > > > > > snip>>> > > 5. Adrenal Insufficiency > > > > This might be more properly described as low adrenal reserve. Since > > hypothyroidism adversely affects every cell, every tissue, and > every > > gland > > in the body it is clear that the endocrine system as a whole will > be > > also > > similarly affected. The adrenals will be subject firstly to lowered > > efficiency resulting from a lowered vitality primary to > > hypothyroidism, and > > secondarily, to reduced ACTH stimulation from the pituitary. As a > > result, in > > general, patients with a protracted and/or severe hypothyroid state > > will > > have some degree of adrenal insufficiency. A significant level of > > this will > > be suspected in these situations: > > > > a. Longstanding and severe hypothyroidism. > > > > Episodes of extreme exhaustion, or collapse. > > Bad response to minor illness. > > . Multiple allergies. > > Digestive problems - alternate diarrhea and constipation > > Flatulence > > Weight loss > > Increasing arthralgia (fibromyalgia) and morning stiffness. > > Pallor, yellow pigmentation (due to poorly metabolized carotene) > > Fainting, dizziness > > These patients often present with dark rings under their eyes, > > looking quite > > ill. Blood pressure is low, with a positive Raglan's sign. > (Pressure > > fails > > to rise on standing). These symptoms and signs, it will be > > appreciated, are > > those of the early phases of 's Disease. > > > > A single estimation of blood Cortisol is usually unhelpful, but > > De-hydroepiandrosterone sulphate (DHEA), the main hormone output > from > > the > > adrenals, will be found to be low. Depressed levels in the > endocrine > > system > > as a whole are likely to be found. The low adrenal reserve means > > patients > > are more or less well, until challenged by the stress of illness or > > life > > events--even the thyroid replacement therapy itself initially. And > > this > > partial failure will affect adversely T4-T3 conversion and the > > integrity of > > the thyroid receptors. > > > > It is essential to manage this insufficiency where present, or where > > suspected. Remarkably, patients with symptoms, signs and blood > > pathology of > > low thyroid, may improve completely on management and correction of > > the > > adrenal problems alone; as conversion and receptor efficiency > > improves, the > > thyroid hormone circulating - partly unused - is brought into play. > > > > Adrenal insufficiency is dealt with by the provision of the two > > hormones > > most likely to be lacking; Cortisonehydrocortisone, and DHEA. (as > > pointed > > out above, low DHEA may be used to infer low cortisone output). The > > treatment therefore, is the exhibition of, ideally, Hydrocortisone. > > This > > should be given in divided doses initially of 5mg qds; after a > week, > > 10 mg > > qds may be used. This remains a physiological dose, not challenging > or > > suppressing the adrenal function, but supplementing it. In these > > doses all > > of the usual anxieties associated with cortisone do not apply, since > > restoration of normality is being aimed at. > > > > This may need to be explained to patients long subject to media- > > induced > > fears of the horrors of corticosteroids (Their physicians may share > > these > > anxieties, unnecessarily). Dr McCormack Jeffries' papers on the > > subject are > > most worthy of study. DHEA has reached prominence in recent times > as a > > hormone of multiple, and magic properties. Certain it is that the > > adrenals > > secrete more DHEA than anything else, and the amount is inversely > > proportional to age. It is metabolized to oestrogen and/or > > testosterone, but > > also has been shown to play a role in reducing obesity; in reducing > > atherosclerosis and cholesterol; it inhibits the glucose -6- > > dehydrogenase > > enzyme in cancer; it improves immune response, and, possibly, acts > as > > a > > neural facilitator. In physiological doses, there seems to be no > > problem in > > its long-term use. If levels are demonstrably low, it is reasonable > to > > provide replacement therapy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2003 Report Share Posted December 1, 2003 My husband also has persistent depression, and his latest thyroid tests showed his T4 and T3 were in the bottom range of normal. I am giving him a bit of T3 and he is feeling better. Jan > > I have been going over all my old info when I read this and > remembered you and the betacarotene problem that you have. It's a > good idea for all of us to know what specific problems some of us > have--this way it just triggers our memory to something we read > somewhere. > > right now I am trying to help a friend whose family has depression > big time--I told him to look into the thyroid/adrenal just to be sure > this is not what they really have going on. > You just never know??? Glad it could help---tina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Hi Jan, First I want to say that I'm sorry you and your family have been going through so much stress regarding your grandmother. I also want to thank you very much for your post and your kind words. You may (or may not) have noticed that I ended up taking some slack for the original post that I sent out. It seems that some people were terribly offended when I suggested that some doctors may not know what they're doing when it comes to CML. Go figure. As far as your grandmother is concerned, you probably have read by now that being on just 200mg of Gleevec (as she was), is considered a sub-optimal dose and often leads to resistance. Also, I don't know any doctor who would declare a patient to be in blast phase without doing a bone marrow biopsy to confirm the number of blast cells in the marrow. I find it concerning that she is still on the 600mg dose with her ANC only being 0.5. That is quite low (no doubt from the overdose with Hydroxyurea). Many doctors would stop Gleevec treatment altogether with such a low ANC (absolute neutrophil count). You can find the Gleevec prescribing information in our files section (at the end of the FAQ). It mentions how to handle crashing counts such as when to stop Gleevec and when to restart depending on what the ANC is. The good news is that your Grandma is about to to see one of the biggest CML experts in the world! And there are several options open to her with the new trials so that's even more good news I wish your Grandmother all the best in the world, as well as your whole family. Please let us know what Dr. Druker says and how your Grandma is doing. Take care, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Hi Tracey, I post on Jerry's BMS board. The posts about doctors who are ignorant about CML has come up many times in our discussions. Partly to blame is the relative small number of patients. Some hematologists have never even seen a CML patient in their practice. We have also discussed doctors who can be very cold and uncaring and not really knowledgeable on how to approach patients with a potentially fatal disease. They are out there. To their credit, most (but not all) do care to learn about CML and do care about the treatment their new CML patients eventually receive and will dedicate time and energy to better themselves. That insensitivity seen in doctors is certainly not foreign on the boards as was your experience. My humble suggestion, which I have given to patients who are seemingly stuck to shall we say not brilliant doctors as well, is to show patience and to educate them on the disease and/or to the reality of the world. Make better use of your attention by dedicating yourself to those board members who understand and live by a better manners code. I caught your post because you talk about Jan's grandmother having such a low ANC while she is adviced to continue to take a strong medicine dosage. My wife, who is a CML patient, has been experiencing WBC and ANC count crashing while under BMS therapy. She has been advised by our doctor and the BMS team to stop taking the medication when she is crashing. If the crashing persists on a 2nd attempt, her dosage has been reduced. We have gone thru this cycle 3 times and are still fighting white blood and ANC stabilization. In between she has also been taking, under medical advice, Neupogen shots to simulate an infection and stimulate the bone marrow to raise white blood cells. Despite the stops and starts and the chronic problem which we are trying to find a solution for my wife has reached CCR, FISH negative and prcu in a 1:10,000 cells sensitivity test. I find it strage and very dangerous for Jan's grandma to keep taking a high dosage of Gleevec while her ANC is below the safe level of 1, when potential neutropenia problems can develop. I would worry a ton if I were Jan and seek other medical advice as early as yesterday. Please pass this email by Jan because I don't have her address. Sincerely: a care giver. _____ From: Tracey [mailto:traceyincanada@...] Sent: Tuesday, February 14, 2006 2:24 PM Subject: [ ] for Jan Hi Jan, First I want to say that I'm sorry you and your family have been going through so much stress regarding your grandmother. I also want to thank you very much for your post and your kind words. You may (or may not) have noticed that I ended up taking some slack for the original post that I sent out. It seems that some people were terribly offended when I suggested that some doctors may not know what they're doing when it comes to CML. Go figure. As far as your grandmother is concerned, you probably have read by now that being on just 200mg of Gleevec (as she was), is considered a sub-optimal dose and often leads to resistance. Also, I don't know any doctor who would declare a patient to be in blast phase without doing a bone marrow biopsy to confirm the number of blast cells in the marrow. I find it concerning that she is still on the 600mg dose with her ANC only being 0.5. That is quite low (no doubt from the overdose with Hydroxyurea). Many doctors would stop Gleevec treatment altogether with such a low ANC (absolute neutrophil count). You can find the Gleevec prescribing information in our files section (at the end of the FAQ). It mentions how to handle crashing counts such as when to stop Gleevec and when to restart depending on what the ANC is. The good news is that your Grandma is about to to see one of the biggest CML experts in the world! And there are several options open to her with the new trials so that's even more good news I wish your Grandmother all the best in the world, as well as your whole family. Please let us know what Dr. Druker says and how your Grandma is doing. Take care, Tracey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2006 Report Share Posted February 14, 2006 Hi , Thanks for your caring note. You speak very wisely It sounds like your wife is doing marvellously in spite of her low counts. Your story will no doubt inspire many others who are struggling with low counts and treatment interruptions. I certainly agree with you that having an ANC as low as Jan's Grandmother, is a concern. I hope her counts bounce back up on their own but most often the treatment does need to be stopped when they go this low. I hope she can consult with someone who knows something about this before she sees Dr. Druker next month as it seems her current doctor doesn't know much. Thanks again for your post and all the best to you and your wife. Tracey > > Hi Tracey, > I post on Jerry's BMS board. > The posts about doctors who are ignorant about CML has come up many times in > our discussions. Partly to blame is the relative small number of patients. > Some hematologists have never even seen a CML patient in their practice. We > have also discussed doctors who can be very cold and uncaring and not really > knowledgeable on how to approach patients with a potentially fatal disease. > They are out there. To their credit, most (but not all) do care to learn > about CML and do care about the treatment their new CML patients eventually > receive and will dedicate time and energy to better themselves. That > insensitivity seen in doctors is certainly not foreign on the boards as was > your experience. My humble suggestion, which I have given to patients who > are seemingly stuck to shall we say not brilliant doctors as well, is to > show patience and to educate them on the disease and/or to the reality of > the world. Make better use of your attention by dedicating yourself to those > board members who understand and live by a better manners code. > I caught your post because you talk about Jan's grandmother having such a > low ANC while she is adviced to continue to take a strong medicine dosage. > My wife, who is a CML patient, has been experiencing WBC and ANC count > crashing while under BMS therapy. She has been advised by our doctor and the > BMS team to stop taking the medication when she is crashing. If the crashing > persists on a 2nd attempt, her dosage has been reduced. We have gone thru > this cycle 3 times and are still fighting white blood and ANC stabilization. > In between she has also been taking, under medical advice, Neupogen shots to > simulate an infection and stimulate the bone marrow to raise white blood > cells. Despite the stops and starts and the chronic problem which we are > trying to find a solution for my wife has reached CCR, FISH negative and > prcu in a 1:10,000 cells sensitivity test. > I find it strage and very dangerous for Jan's grandma to keep taking a high > dosage of Gleevec while her ANC is below the safe level of 1, when potential > neutropenia problems can develop. > I would worry a ton if I were Jan and seek other medical advice as early as > yesterday. > Please pass this email by Jan because I don't have her address. > Sincerely: a care giver. > > > _____ > > From: Tracey [mailto:traceyincanada@...] > Sent: Tuesday, February 14, 2006 2:24 PM > > Subject: [ ] for Jan > > > Hi Jan, > > First I want to say that I'm sorry you and your family have been > going through so much stress regarding your grandmother. > > I also want to thank you very much for your post and your kind > words. You may (or may not) have noticed that I ended up taking > some slack for the original post that I sent out. It seems that > some people were terribly offended when I suggested that some > doctors may not know what they're doing when it comes to CML. Go > figure. > > As far as your grandmother is concerned, you probably have read by > now that being on just 200mg of Gleevec (as she was), is considered > a sub-optimal dose and often leads to resistance. Also, I don't > know any doctor who would declare a patient to be in blast phase > without doing a bone marrow biopsy to confirm the number of blast > cells in the marrow. > > I find it concerning that she is still on the 600mg dose with her > ANC only being 0.5. That is quite low (no doubt from the overdose > with Hydroxyurea). Many doctors would stop Gleevec treatment > altogether with such a low ANC (absolute neutrophil count). You can > find the Gleevec prescribing information in our files section (at > the end of the FAQ). It mentions how to handle crashing counts such > as when to stop Gleevec and when to restart depending on what the > ANC is. > > The good news is that your Grandma is about to to see one of the > biggest CML experts in the world! And there are several options open > to her with the new trials so that's even more good news > > I wish your Grandmother all the best in the world, as well as your > whole family. Please let us know what Dr. Druker says and how your > Grandma is doing. > > Take care, > Tracey > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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