Monday, March 31, 2008
No BMB Today
Why not? Jordan's platelets are too low, back down to 10K. HGB is already down to 8.5. He will get transfusions of both again today. The bone marrow biopsy is rescheduled for tomorrow. Fever bouncing around, down to 99.?, then up to 101.? Dr. Z said he'll try to get the Seattle appointment for next week. Ugh. This week. This week!
Sunday, March 30, 2008
Our Prayer
Just as we thought he would,, Jordan received two units of packed red blood cells along with the unit of platelets on Friday afternoon. Still, he didn't get that little boost he sometimes gets after a fresh supply of blood products. At first, he thought we were making a fuss about how much, or little, he was eating, but in the last day or two, he agreed that it's a valid concern. He's tried to eat whatever we've prepared, even making suggestions, but he usually takes one or two bites, and he's done. He's not hungry, his appetite is just AWOL! His mainstays have been water, Sprite, ginger ale,, Dreyer's frozen Fruit Bars,, and 3-oz orange and vanilla ice cream cups. Throughout the week, he's nibbled a bit of a pasta dish, a bite of a grilled tuna sandwich, a few grapes, some pretzels, maybe ten peanuts, and he got down a smallish slice of pizza on two occasions. When he drank not one but two strawberry smoothies yesterday, we were cautiously exuberant. Too much sugar, we wondered? This morning we tried a thin soup of chicken broth and potatoes smoothed out by a few seconds in the blender. He got all of it down! Maybe four or five ounces worth! True, it was like taking a big dose of medicine, all for the noble cause of nutrition. But then, oooooooooops, it didn't stay down. Back to ginger ale. And how about some raspberry yogurt? Yes? Good, here you go.
No one looks forward to a bone marrow biopsy, but we hope Jordan's will take place tomorrow nonetheless. We feel we're on a tight schedule, needing to do the BMB, allowing pathologists ample time to process the tissue samples, and then traveling to Seattle before the week is over. Unless Heavenly Father has another plan, a better plan, this is what we're praying for.
At this point, Shane and Brianna and I departed for church, leaving Dan and Jordan with strict instructions to get the labs done before we returned. We anticipated spending a nice, quiet afternoon together, doing some reading, a writing project, a little paperwork, mainly relaxing. When we pulled into the garage, we noted Dan's car was there, and we thought all was going according to plans. While at church, several friends had greeted us happily, concluding that Jordan was home and doing well since Brianna was with us. We tempered the conclusion a little by explaining he was home, but he wasn't feeling as well as we'd all like. When we walked in and Jordan was nowhere to be found, it was a let-down to learn that he hadn't been able to come home because he had a fever. Brianna swiftly gathered clothing, the laptop, books, a little food, and Dan took her to join Jordan for at least one night in hospital. His throat has been slightly sore for a couple of days, so maybe the blood cultures will turn up something this time. For now, he's receiving saline, antibiotics, and TPN, total parenteral nutrition. From Wikipedia: "TPN is the practice of feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids, and added vitamins."
Thursday, March 27, 2008
Here We Go, or Don't Go, Again
Back on Feb. 6th, a time we called our day of desperation, Dr. Z. walked into Jordan's hospital room with a bombshell of an announcement. "I may have to transfer you to Ohio for treatment," he stated, setting off waves of confusion and panic within us. We flew to the phone and the computer in search of treatment options closer to home, only to be encouraged to remain in Boise after all. Seven weeks later, no one so much as batted an eyelash today upon hearing that Jordan may be sent to confer with a sarcoma specialist in Seattle. This time, we are more than ready and willing to go! A consultation with a specialist is far less daunting than being packed off for months and months of treatment in a faraway place, and we have felt all along that we need a specialist on board. So, on Monday, when Jordan goes in for a bone marrow biopsy, we hope to learn more about this possibility. They couldn't recall the Seattle doc's name, only that it was Douglas something or other. A few minutes alone with the internet, and I think I may have found him. Could it be Dr. Douglas S. Hawkins? Stay tuned, for we shall soon see.
Jordan has been especially weak over the last few days, and he continues to be able to eat very little. He's lost another ten pounds, down about 30 pounds since Jan. He has one small mouth sore, and is in the midst of his first brush with thrush. It's in his mouth, and according to the doctor, it could very well be in the esophagus too. He started taking an antifungal, Flucanazole, and from more of our internet reading, he'll try to add a bit of unsweetened yogurt to promote the colonization of helpful bacteria that antibiotics often, or maybe always, destroy. Lots of antibiotics and a weakened immune system make candidiasis almost a given. The doctor also told us that he thinks he's figured out why Jordan was in so much pain last week. It was the Zometa. Humph! He wondered aloud if the high calcium reading was a mistake. Our feeling is that it was not. The calcium level slowly rose throughout the week. Now if the blood chemistry tests had been done every day, we could be certain, with no need for second guessing. We prefer a closer watch on all these crucial blood chemistry, and whatever else they're called, levels. Take LDH for example. We don't understand all we'd like to about it. We do know that when it rises, it's bad news, and when it rises a lot, it's really, really bad news. Oh, I hope that isn't too technical for anyone. Last week, it was at 1100. Today, 1584. Normal is about 200. That's bad news.
Jordan located one of his former role-playing buddies earlier this week, so he, Brianna, and Shane, along with the found friend, Ryan, and his wife, Audra, all enjoyed a six-hour escape into the world of fantasy games this evening. They plan to get together for another round of fun next Thursday. But next up on his agendum, Jordan gets two more bags of platelets tomorrow. They were down to 15K today. Hemoglobin was at 9.4. A little lower, and he'll be needing a serving of packed red blood cells along with those platelets. WBC's are abysmal at .1. We hope Neupogenn does its thing (stimulating WBC production), minus the bone pain!
Jordan has been especially weak over the last few days, and he continues to be able to eat very little. He's lost another ten pounds, down about 30 pounds since Jan. He has one small mouth sore, and is in the midst of his first brush with thrush. It's in his mouth, and according to the doctor, it could very well be in the esophagus too. He started taking an antifungal, Flucanazole, and from more of our internet reading, he'll try to add a bit of unsweetened yogurt to promote the colonization of helpful bacteria that antibiotics often, or maybe always, destroy. Lots of antibiotics and a weakened immune system make candidiasis almost a given. The doctor also told us that he thinks he's figured out why Jordan was in so much pain last week. It was the Zometa. Humph! He wondered aloud if the high calcium reading was a mistake. Our feeling is that it was not. The calcium level slowly rose throughout the week. Now if the blood chemistry tests had been done every day, we could be certain, with no need for second guessing. We prefer a closer watch on all these crucial blood chemistry, and whatever else they're called, levels. Take LDH for example. We don't understand all we'd like to about it. We do know that when it rises, it's bad news, and when it rises a lot, it's really, really bad news. Oh, I hope that isn't too technical for anyone. Last week, it was at 1100. Today, 1584. Normal is about 200. That's bad news.
Jordan located one of his former role-playing buddies earlier this week, so he, Brianna, and Shane, along with the found friend, Ryan, and his wife, Audra, all enjoyed a six-hour escape into the world of fantasy games this evening. They plan to get together for another round of fun next Thursday. But next up on his agendum, Jordan gets two more bags of platelets tomorrow. They were down to 15K today. Hemoglobin was at 9.4. A little lower, and he'll be needing a serving of packed red blood cells along with those platelets. WBC's are abysmal at .1. We hope Neupogenn does its thing (stimulating WBC production), minus the bone pain!
Tuesday, March 25, 2008
So Long
Oh, we're not going anywhere in particular, just to do daily labs, but it was yesterday that seemed so long. With Jordan's youngest brother, Shane, on spring break from high school this week, Jordan really enjoyed having him as his chauffeur for the day. Having one of his brothers around gives him a boost of energy and well-being like nothing else does! Even the nausea cleared as the day wore on, and on, and on.
First stop was the clinic for a CBC (complete blood count). Wo Nelly,, it showed a trip to the hospital for a couple of bags of platelets needed to be added to the schedule. They had fallen from 21K to 9K in one day! It takes the hospital a couple of hours to prepare for a transfusion though, so that left plenty of time to visit Brianna's attorney who is helping her work through the labyrinth of requirements for gaining permanent U.S. residency. We've heard enough stories of botched immigration applications, and the stakes are so high, that we gladly forsook our mostly penurious ways to enlist the aid of an experienced immigration attorney. She gave Brianna a copy of the following letter written by Jordan's doctor for inclusion with the application.
March 4, 2008
To Whom It May Concern:
Mr. Washburn is suffering from metastatic sarcoma to bone marrow, stage IV. This is generally considered a fatal illness. The presence of his wife, Brianna, in my opinion, is considered essential to this patient's health at this time. His wife has been extremely helpful for allowing us to provide chemotherapy to this patient, keeping close records of his care and his side effects, and notifying when there has been a change of condition. The patient has required numerous hospitalizations for infections while receiving chemotherapy.
We are respectfully requesting that his wife, Brianna, be permitted to stay in this country to assist us in managing Mr. Washburn's malignancy.
Yours truly,
Norman Zuckerman
So yesterday's meanderings led through the clinic, to the attorney, the hospital, then on to Best Buy, Carl's Jr., and a place called All About Games. They left home at about 11:30, and didn't return until after 8 PM! You'd think retiring to bed would be the next move, but no, Jordan stayed up until a little past midnight. We were waiting and worrying at home during all these activities, but are pleased and happy that he had the stamina to go out and seize the day!
First stop was the clinic for a CBC (complete blood count). Wo Nelly,, it showed a trip to the hospital for a couple of bags of platelets needed to be added to the schedule. They had fallen from 21K to 9K in one day! It takes the hospital a couple of hours to prepare for a transfusion though, so that left plenty of time to visit Brianna's attorney who is helping her work through the labyrinth of requirements for gaining permanent U.S. residency. We've heard enough stories of botched immigration applications, and the stakes are so high, that we gladly forsook our mostly penurious ways to enlist the aid of an experienced immigration attorney. She gave Brianna a copy of the following letter written by Jordan's doctor for inclusion with the application.
March 4, 2008
To Whom It May Concern:
Mr. Washburn is suffering from metastatic sarcoma to bone marrow, stage IV. This is generally considered a fatal illness. The presence of his wife, Brianna, in my opinion, is considered essential to this patient's health at this time. His wife has been extremely helpful for allowing us to provide chemotherapy to this patient, keeping close records of his care and his side effects, and notifying when there has been a change of condition. The patient has required numerous hospitalizations for infections while receiving chemotherapy.
We are respectfully requesting that his wife, Brianna, be permitted to stay in this country to assist us in managing Mr. Washburn's malignancy.
Yours truly,
Norman Zuckerman
So yesterday's meanderings led through the clinic, to the attorney, the hospital, then on to Best Buy, Carl's Jr., and a place called All About Games. They left home at about 11:30, and didn't return until after 8 PM! You'd think retiring to bed would be the next move, but no, Jordan stayed up until a little past midnight. We were waiting and worrying at home during all these activities, but are pleased and happy that he had the stamina to go out and seize the day!
Saturday, March 22, 2008
A Long and Winding Week
Five days of fun with Ifosfamide, Etoposide, and Mesna are behind us, but the nausea and vomiting linger on. Jordan came home today with barf bowl in hand. He's made good use of it several times already, all antiemetics having become ineffective. After repeated attempts at eating or drinking a little something, someone asked him if everything just tasted off. "Either off, or awful," he replied. Again we wonder if this is a premature release, although we do so prefer having him home.
This week's challenges included a day or two of fever, low calcium levels (brought on by the Zometa administered to correct the elevated calcium level), and the major problem of severe pain. Clearly, adjusting the pain meds is a tricky business, but it's hard to comprehend why Tuesday and Wednesday (as well as many other times) were so pain-filled, given that on Thursday, with the first use of Dilaudid and Oxycontin he found relief. Not immediately, but by the end of the day, he was much better, able to get up and stroll about the halls for exercise and a break from the confines of his too-cozy (cramped?) room.
Heigh-ho, on a brighter note, Harold worked his magic on the laptop. It's back where it belongs, providing a welcome link to a wider world. We've also ferreted out a couple of leads on other treatment options to present to the doctor, although our data is still insufficient. He agreed to take a look at our findings if we brought him articles validating the efficacy of clinical trials. The search is on, but it occurs to us that progress updates (or whatever the proper term may be), on clinical trials may not be within our purview. Another question has niggled its way to consciousness since we spoke with him on Thursday which demands an answer, most likely at tomorrow's appointment. And it is: You're searching too, right?
This week's challenges included a day or two of fever, low calcium levels (brought on by the Zometa administered to correct the elevated calcium level), and the major problem of severe pain. Clearly, adjusting the pain meds is a tricky business, but it's hard to comprehend why Tuesday and Wednesday (as well as many other times) were so pain-filled, given that on Thursday, with the first use of Dilaudid and Oxycontin he found relief. Not immediately, but by the end of the day, he was much better, able to get up and stroll about the halls for exercise and a break from the confines of his too-cozy (cramped?) room.
Heigh-ho, on a brighter note, Harold worked his magic on the laptop. It's back where it belongs, providing a welcome link to a wider world. We've also ferreted out a couple of leads on other treatment options to present to the doctor, although our data is still insufficient. He agreed to take a look at our findings if we brought him articles validating the efficacy of clinical trials. The search is on, but it occurs to us that progress updates (or whatever the proper term may be), on clinical trials may not be within our purview. Another question has niggled its way to consciousness since we spoke with him on Thursday which demands an answer, most likely at tomorrow's appointment. And it is: You're searching too, right?
Monday, March 17, 2008
Trials and Smiles
Jordan's birthday celebration may not have been a blast, but it wasn't a dud, either. The German chocolate cupcakes, recipe compliments of Liz, were a hit, and the visits and gifts (games, movies,a handmade quilt, aww, even those wacky bug vision glasses) were warmly received. When a four hour get out of Hospital Free card was presented by the staff, Jordan lost no time in requesting a meal of Brianna's delectable barbecued chicken. The downside of the day, though, was having to hand over his nearly brand-new laptop to a friend for repair. Still, the upside is having a friend who's willing to work on it, maybe keeping it from being shipped all the way back to California. Thank you, Harold!
The fourth round of chemotherapy began today with the twin dragons of Ifosfamide and Etoposide. Already, for an unknown (to us) reason, his heart rate dropped to 47 beats per minute. The normal rate is about 70-90 bpm. Another concern is that just last Thursday, he required two units of packed red blood cells, and yesterday, only 3 days later, another 2 units had to be transfused. The results of chemo just are not meeting expectations. This morning, phone calls were made on Jordan's behalf in search of additional options and information. The NCI responded by supplying links to 2 clinical trials ongoing at the NIH, with a promise of more trial data to come. We've been told that another bone marrow biopsy and more testing will be performed after this round. If warranted, we would like to have a new strategy for treatment in place.
The fourth round of chemotherapy began today with the twin dragons of Ifosfamide and Etoposide. Already, for an unknown (to us) reason, his heart rate dropped to 47 beats per minute. The normal rate is about 70-90 bpm. Another concern is that just last Thursday, he required two units of packed red blood cells, and yesterday, only 3 days later, another 2 units had to be transfused. The results of chemo just are not meeting expectations. This morning, phone calls were made on Jordan's behalf in search of additional options and information. The NCI responded by supplying links to 2 clinical trials ongoing at the NIH, with a promise of more trial data to come. We've been told that another bone marrow biopsy and more testing will be performed after this round. If warranted, we would like to have a new strategy for treatment in place.
Saturday, March 15, 2008
Misdiagnosed?
The jury's still out on that question, but we do know that Jordan should not have been released from the hospital on Thursday, the 13th. He was absolutely miserable all night, with uncontrolled pain and nausea, and very little sleep for him or Brianna. By Friday morning, we called Doyle and Phil for a blessing, after which Doyle transported us to the ER. Blood-flecked vomit was the last straw, giving us the final push out the door. Once at the hospital, there were more blood draws, abdominal and chest x-rays, liters of saline, 8 milligrams of morphine, and then it was back up to 4th South for admission. Grrr, we're thinking, just try dislodging us while Jordan continues to suffer with the same symptoms.
No chance of that, instead, we are introduced to a new medical crisis, hypercalcemia. Hy per cal whatia? Hypercalcemia: An abnormally high concentration of blood calcium. In myeloma, and other malignancies, the breakdown of bone,which is rich in calcium, is the main cause of high blood and urine calcium. The high calcium can contribute to weakness, loss of appetite, nausea, confusion, lethargy, and other symptoms. Its normal range is between 8.7-10.4. Jordan's was at 14.3, a medical crisis. and what do we do in times of crisis? Pray. And then? Go online to access the collective wisdom of our support teams. Friday night, I sent out a plea for input from the Rhabdo=-Kids listserve.
An excerpt from the letter of a rhabdo-friend, James Atkinson of North Carolina:
Bonnie, They probably will be able to get the hypercalcemia under control fairly rapidly, which is great since nothing makes you feel sick and wrong faster than too much serum calcium. Almost all of the symptoms you mention on the blog page could be attributed to hypercalcemia: nausea, loss of peristalsis, chest pain...all of it. Calcium is vital to every neural system we have, so when it gets out of whack like that, the body just does not work right. Because of the many unpredictable things that hypercalcemia can do to you, hospitalization is necessary. I will go out on a limb and say that I think that the Neupogen issue is a red herring. It can cause bone pain, absolutely, but not the other constellation of symptoms that you describe. My money is on the calcium this time.
From several articles provided by Michelle, another rhabdo-friend, I ten to concur with James on attributing the past week's woes to hypercalcemia. Along with the pain and nausea, Jordan developed a 102,8 degree fever, and delirium. To our great relief, he began to improve with a 1 miligram per hour morphine drip (yes I know I said no more morphine, but that was then, this is now), with IV Ativan, IV hydration, and two broad spectrum antibiotics, Vancomycin and Cefatazadime. Due to his hallucinations, we now know what lies buried deep within Jordan's subconscious mind. Anyone got a guess? It makes perfect sense, knowing Jordan. Fortunately, he is now lucid, the ileus has cleared, he's been able to keep food and liquids down today, even walking about a little for exercise. For the record, Zometa is the medicine being used to treat the hypercalcemia.
Meanwhile, James has raised another question which must be answered once and for all. It will be most uncomfortable to rehash the rhabdomyosarcoma diagnosis with our doctor, a man to whom we are deeply indebted, but we feel compelled to do so for Jordan's sake. The pathologists gave a differential diagnosis of either rhabdo or an acute erythroid leukemia. Here is James's mind-spinning correspondence:
A differential diagnosis of ARMS or acute erythroid leukemia suggests to me not a lack of guts but rather (i) lack of definitive data and (ii) an unwillingness to get the additional data, perhaps because of stupid bottom-line economics. Treatment for the two diseases is markedly different. I am surprised that they had "guts enough" to proceed with one protocol over another based on what amounts to a guess. From a cost standpoint, nothing is more expensive than a botched diagnosis. The bean counters never believe that. Diagnosis of AEL (and myeloid dysplasias in general) is determined by specific standards --- percentages of certain kinds of cells in the sample, among a constellation of other things. To muddy the waters, it appears that right now there are older diagnostic standards (FAB, or"French-British-American") and newer diagnostic standards promulgated by theWorld Health Organization, and that there is some degree professional disagreement between the two schools. The same patient might end up with different diagnoses depending on which criteria the reviewing pathologistuses. If the pathologists at UNM and Stanford were using the FAB criteria, their report should include additional classification data: classification M6a orclassification M6b. These refer to specific presentations within the marrow sample they had in front of them. If they were using the WHO standards, they also should have included specific blast measurements/counts, etc., that they used in order to generate the differential. It's such an odd differential that they had to base it on something ... more than just "small round blue cells" under the microscope. The cytogenetics of ARMS vs. AEL are different, so, again, if you can get someone to run the appropriate genetic assay, you should come up with a definitive lean one direction or the other. There may be separate assays for ARMS and AEL. I will say this: as rare as ARMS is in adults, acute erythroid leukemiaprobably is only marginally less so, and especially in people who have not previously been exposed to alkylating chemotherapy or benzenes. If you'replaying the numbers, that is to say, a de novo case of AEL overall probably is less likely than a case of ARMS, which is saying quite a lot given the utter rarity of ARMS in adults.
And if that's not enough, here's one more little tangle to unravel from another rhabdo-friend, Chris:
Bonnie, just to add to your already complex situation, if your son had ifosomide it is possible that he may have fanconi syndrome, it also causes a lot of those symptoms. My daughter has acquired fanconi syndrome from ifos. It damages the kidney tubules and affects the way the body converts vit D,. this inturn disrupts all the calcium, alkaline phosphatase, potassium, phosphate, and uric acid and glucose. It's worth asking the question as it is easily managed and saves lots of heartache.
Chris mum to Sarah erms 21/2 years off treatment.
No chance of that, instead, we are introduced to a new medical crisis, hypercalcemia. Hy per cal whatia? Hypercalcemia: An abnormally high concentration of blood calcium. In myeloma, and other malignancies, the breakdown of bone,which is rich in calcium, is the main cause of high blood and urine calcium. The high calcium can contribute to weakness, loss of appetite, nausea, confusion, lethargy, and other symptoms. Its normal range is between 8.7-10.4. Jordan's was at 14.3, a medical crisis. and what do we do in times of crisis? Pray. And then? Go online to access the collective wisdom of our support teams. Friday night, I sent out a plea for input from the Rhabdo=-Kids listserve.
An excerpt from the letter of a rhabdo-friend, James Atkinson of North Carolina:
Bonnie, They probably will be able to get the hypercalcemia under control fairly rapidly, which is great since nothing makes you feel sick and wrong faster than too much serum calcium. Almost all of the symptoms you mention on the blog page could be attributed to hypercalcemia: nausea, loss of peristalsis, chest pain...all of it. Calcium is vital to every neural system we have, so when it gets out of whack like that, the body just does not work right. Because of the many unpredictable things that hypercalcemia can do to you, hospitalization is necessary. I will go out on a limb and say that I think that the Neupogen issue is a red herring. It can cause bone pain, absolutely, but not the other constellation of symptoms that you describe. My money is on the calcium this time.
From several articles provided by Michelle, another rhabdo-friend, I ten to concur with James on attributing the past week's woes to hypercalcemia. Along with the pain and nausea, Jordan developed a 102,8 degree fever, and delirium. To our great relief, he began to improve with a 1 miligram per hour morphine drip (yes I know I said no more morphine, but that was then, this is now), with IV Ativan, IV hydration, and two broad spectrum antibiotics, Vancomycin and Cefatazadime. Due to his hallucinations, we now know what lies buried deep within Jordan's subconscious mind. Anyone got a guess? It makes perfect sense, knowing Jordan. Fortunately, he is now lucid, the ileus has cleared, he's been able to keep food and liquids down today, even walking about a little for exercise. For the record, Zometa is the medicine being used to treat the hypercalcemia.
Meanwhile, James has raised another question which must be answered once and for all. It will be most uncomfortable to rehash the rhabdomyosarcoma diagnosis with our doctor, a man to whom we are deeply indebted, but we feel compelled to do so for Jordan's sake. The pathologists gave a differential diagnosis of either rhabdo or an acute erythroid leukemia. Here is James's mind-spinning correspondence:
A differential diagnosis of ARMS or acute erythroid leukemia suggests to me not a lack of guts but rather (i) lack of definitive data and (ii) an unwillingness to get the additional data, perhaps because of stupid bottom-line economics. Treatment for the two diseases is markedly different. I am surprised that they had "guts enough" to proceed with one protocol over another based on what amounts to a guess. From a cost standpoint, nothing is more expensive than a botched diagnosis. The bean counters never believe that. Diagnosis of AEL (and myeloid dysplasias in general) is determined by specific standards --- percentages of certain kinds of cells in the sample, among a constellation of other things. To muddy the waters, it appears that right now there are older diagnostic standards (FAB, or"French-British-American") and newer diagnostic standards promulgated by theWorld Health Organization, and that there is some degree professional disagreement between the two schools. The same patient might end up with different diagnoses depending on which criteria the reviewing pathologistuses. If the pathologists at UNM and Stanford were using the FAB criteria, their report should include additional classification data: classification M6a orclassification M6b. These refer to specific presentations within the marrow sample they had in front of them. If they were using the WHO standards, they also should have included specific blast measurements/counts, etc., that they used in order to generate the differential. It's such an odd differential that they had to base it on something ... more than just "small round blue cells" under the microscope. The cytogenetics of ARMS vs. AEL are different, so, again, if you can get someone to run the appropriate genetic assay, you should come up with a definitive lean one direction or the other. There may be separate assays for ARMS and AEL. I will say this: as rare as ARMS is in adults, acute erythroid leukemiaprobably is only marginally less so, and especially in people who have not previously been exposed to alkylating chemotherapy or benzenes. If you'replaying the numbers, that is to say, a de novo case of AEL overall probably is less likely than a case of ARMS, which is saying quite a lot given the utter rarity of ARMS in adults.
And if that's not enough, here's one more little tangle to unravel from another rhabdo-friend, Chris:
Bonnie, just to add to your already complex situation, if your son had ifosomide it is possible that he may have fanconi syndrome, it also causes a lot of those symptoms. My daughter has acquired fanconi syndrome from ifos. It damages the kidney tubules and affects the way the body converts vit D,. this inturn disrupts all the calcium, alkaline phosphatase, potassium, phosphate, and uric acid and glucose. It's worth asking the question as it is easily managed and saves lots of heartache.
Chris mum to Sarah erms 21/2 years off treatment.
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