There is an article in today's New York Times about a nationwide shortage of methotrexate, specifically the preservative-free form that is used for IT treatments. This effects ALL kids as it is part of all protocols that I am aware of in all phases of treatment.
My son is scheduled for his next LP on Thursday and I have not been informed of any shortage at our hospital.
Beyond what is being said in the media, is anyone aware of this shortage effecting their hospital or their child's treatment?
FYI - I also started this thread on the ACOR ALL-KIDS list
Thank you for posting! I just found this out yesterday and my heart immediately beat right out of my chest! My daughter's protocol calls for both the IT and intermediate dose IV MTX. I cannot bear the thought of what will happen if our kids DO NOT get this drug. I was sad to find out the news through the media and not our Oncologist so I have questioned what they plan to do if and when the shortage reaches us. Am waiting for a reply but will post it here once I find out. Here's a link to the video post I found: http://abcnews.go.com/Health/CancerPreventionAndTreatment/critical-shortage-childrens-leukemia-drug/story?id=15557922#.TzXxE664JeX
I've posted this on my facebook account to get this out to as many people I can to urge their politicians for support. Figure, if we overwhelm their offices it's bound to make the priority list. LLS has a good letter. Here's the link to that as well: http://www.capitolconnect.com/lls-widget/alertdetail.aspx?AlertID=187
Our doctors never told us about the shortage with the IV Zofran either which we depend a lot on during inpatient stays. I overheard another parent's concern so brought that to our doctor's attention. Overall, I find it very frustrating that we're the last to know something on this scale that directly affects our children.
My heart breaks for kids in frontline treatment. Lauren is in LTM and has 5 spinals left between now and December. Her NP emailed me about a week ago and told me about the shortage and they are clustering IT methotrexate so that none gets wasted. She is due for an LP 3/16 and it may get moved to the next week so none is wasted. It makes me feel nauseous and short of breath to think about how this could affect our kids. Sickening. This should not happen in this country.
My son was "denied" IV zophran. Ben (age 6, dx 8/15/11, st risk ALL) started IM 2 for protocol 932 on 2/1/12. In addition to the administration of IT methotrexate, the ENT did a sinus procedure. Ben had several areas in his sinus packed and cauterized (During DI, Ben became septic due to contamination from sinus infection). Every other time Ben has had intrathecal chemotherapy, the IV zophran was administered by the anesthesiologist. This time nothing was given, and I was not told until Ben woke up gagging (accentuated due to the sinus secretions).
When I asked the provider why I was not told, she indicated it was due to the "national shortage." I continued to emphasize that is WRONG to not disclose to the patient or family that this situation is effecting their childs care. Our highly rated Childrens Hospital is not being proactive about this issue (not developing or following a plan to deal with this problem)
I believe that the hospitals, who have the purchasing power to change this situation need to show leadership about this problem.
My son gets IV kytril for his nausea at his ITs. If they deny you zofran, you might want to try the kytril. It is more effective for my son, although I believe it is more expensive. I've also wondered if the 24 hour oral dosing would work. When my son gets a procedure, they give him a 24 hour dose of IV kyrtil during the procedure. Is that different from taking an oral 24 hour dose LESS than 24 hours before the procedure but more than the 6-10 hours they require for an empty stomach? I really don't know, but I wonder if there is a way to address the problem with oral meds. I know I would appreciate being able to have this conversation BEFORE the procedure with our NP (they do the actual procedure) and anesthesiologist, not AFTER!!!
Oral would not work, he was PRN for the intrathecal.
Also the "response" I got from the NP doing the spinal was that neither of the chemo drugs that she was administering that day was known to cause nausea, so that is why she did not pre-medicate with zophran.
Some of the responses I get are just maddening sometimes....
Here is a good article summarizing the drug shortage problem and what can be done. Please click on Angel03's link above to sign a letter to your legislators asking them to support the Preserving Access to Life-Saving Medications Act.
Here's a response from daughter's Oncologist:
"There is indeed a national shortage of methotrexate and COG, ASCO, etc. are all pushing FDA and other government agencies to push for resolve the problem. Over the past several years there have been a continuous stream of chemotherapy shortages in the United States in part because of some rulings toward the end of the Bush administration."
He has assured me that our hospital has enough to last for several months and that there are internal discussions going on to tackle how they will handle it if the shortage persists and reaches us. All-in-all, he's keeping his responses short, sweet and extremely vague so this doesn't give me a warm, fuzzy feeling inside.
Hope his response helps to ease your minds a little!
I also read the article in the NY Times on Saturday and nearly panicked. I even e-mailed a cousin who is an oncology researcher in France to ask about shipping us some if we need it. At the clinic today and we asked the doctor. He said that there has been a "shortage" for a while now, it's just that it's only now getting attention. He said that they have never had to wait more than a day for the methotrexate with the shortages, and they simply reschedule the patients for a day later when that happens. He also stressed that it hasn't happened very often at all. So, I am going to put my trust in that. After all, I put my little boy's life in their hands, I need to trust them on this as well. There are so many other things to worry about. We are inpatient this week while my Aaron gets IV methotrexate.
I liked your posting. Is it hard to get treatment if someone from the US had to go there right away. Please read my post. I think we are headed down the road with a lot a problems. The Methotrexate seems to be resolved. But, that's because we all hammered everyone about it. But, what's going to be the next thing? Larry
Just wanted to add to this discussion....My daughter takes Methotrexate in pill form as part of the Maintenance Phase of her protocol for Acute Promyelocytic Leukemia. I took her to St. Jude Midwest Affiliate in Peoria, IL just this past Wednesday and received the usual 4 week supply of Methotrexate pills. No shortage was mentioned. I read the articles about the shortage over the weekend and have thought about it a lot since.
I also went to our Children's Hospital on Wednesday. They didn't mention either. Here is the CBS Nightly news segment that I posted I'm YouTube. They said that they already closed a plant down this week that manufactures the Methotrexate. If it is just the liquid we still need that for LPs.
Our clinic (Children's Mercy in Kansas City) is now clustering spinals so that absolutely no methotrexate is wasted. There are shortages of other drugs, including iv zofran, versed, daunorubicin, propofol and ARAC still. This kept me from sleeping very well over the weekend. She got vincristine today ( a few days early because they asked me to come in today for an interview) and her spinal and vincristine due 3/16 has been moved to 3/20 so they can cluster spinals that day. I'm hope, hope, hoping they actually have methotrexate in March! Here's a link to the story local Fox News did today. This is scary, scary stuff. Unbelievable. Lauren needs 5 more spinals and my heart breaks for kids in frontline treatment.
I have been contacting our State Senators all morning. Our son also has Leukemia ALL. He has 5 more LPs that need Methotrexate.
I composed a YouTube video of the CBS Nightly news segment to make awareness in hopes it will reach the US Senate.
We're terrified. How can they do this to our children over money.
Tried to access your youtube video, but couldn't use the link. what did you title it? I will search it out that way.
Update from a different doctor at our hospital. I had the discussion this morning while Aaron was hooked up to his preservative free MTX. He is due for another LP in 2 weeks, and more IV MTX. We are of course, nervous. Today, the doctor said that they have been working very closely with the pharmacy here at the hospital, and were very aware of how much they have and who is due for dosages. She said that one of the issues is that once a vial of MTX is opened, they can not keep it for another day. So, when they run low, they will adjust patient schedules to make sure that they are seen all on the same day so they don't waste what they have. She did agree that it is day to day, but that they have been able to work schedules in the past to make sure everyone gets what they need. Not as reassuring as the first doctor I spoke with, but it has more of a ring of truth to it.
I will happily put a link on my facebook page to the youtube video when I find it. I would do pretty much anything to make sure my son gets what he needs to stay alive.
Sorry that was the mobile link to the video from my phone- didn't realize it.
Here is the URL...
But listen, just received an article from a friend that is a POSITIVE here...
FDA Thinks Shortage of Cancer Drug for Kids Can Be Averted
Thanks for starting this thread. LLS is very concerned with this issue and ask that you please take a moment to sign our advocacy alert to Help Preserve Access to Life-Saving Medications (see: http://www.lls.org/#/waystohelp/advocate/ ).
Please contact your legislators now and urge them to cosponsor the Preserving Access to Life-Saving Medications Act now!
Then share the link to our alert with your friends. You signature makes a difference!
I bet the average person hearing this story does not realize that methotrexate is almost 50 years old so this is not some super expensive drug. I guess that is the problem it so cheap that it is not as profitable as many of the newer drugs. It would seem that a drug that is so inexpensive and so needed would be given some type of government support.
The fact that these drugs are so old and therefore so inexpensive, has much to do with the shortage. It isn't profitable for drug companies to make these drugs - a problem exacerbated (inadvertently) by 2003 changes to Medicare, that capped price increases.
The bills pending in congress would require drug companies to notify the FDA of anticipated shortages or changes in production, but don't do anything to address the profit vs. life saving meds issues. You can check out the Senate health committee hearing on drug shortages from December - it provides some additional information about some of the causes and potential solutions.
The tragic irony in our family is that I had a cousin who died at 4 of leukemia in 1961, although she technically died of pneumonia. She was one of the first kids to receive Methotrexate via an NIH study. I tell people this story as often as I can to try to illustrate the pitiful status of pediatric cancer research and drug development. Marta would, literally, be old enough to be Joey's Grandmother, and she trialed the drug that has helped save Joey's life but contributed to his grand mal seizures and may now not even be available anymore. Yet that's the best bet we have, still, 51 years later. Crazy.
Margaret, I love learning your perspective. I was born in 1961. When I was in school a leukemia diagnosis was a death sentence. When I was in elementary school a girl who was a twin was diagnosed. She came to school a few times wearing a wig and in a wheelchair. Her twin brother would push her around. I think of her so often. Then a few years later a little girl who lived a few houses down from us was diagnosed and she didn't last long. Her poor mother lost a daughter and a husband to cancer in a one year time span, leaving just mom and her son. I've read the book The Cure of Childhood Leukemia---Into the Age of Miracles and I think about these little girls and how they paved the way for out kiddos. Reading the book also scares me because it talks so much about how the first remissions resulted in relapses in the CNS. That makes me so scared!
I've contacted representatives, called the drug manufacturers, even called the White House, and did an interview for local news yesterday. This is just appalling to happen in this country. I wish politicians would spend half as much time on this as they do arguing about Planned Parenthood and contraceptive co-pays!
I couldn't agree more! If you're on Facebook, please look up my name Margaret Rodgers Norris and you should see a public document titled Talking points RE: Childhood Cancer. I've been asked by our hospital's PR dept. to talk to the Washington Post. I'm not sure if it's going to happen or not but if they call, I want to be prepared! You can add a comment to correct/add to the document and I will copy and paste your comment and then delete your post since it's a public document.
Yes, I became aware of the shortage today because my husband found an article online. I have already spoken with my head nurse (doctor's right hand woman) and they are grouping the taps so they do not waste any medicine - as the other person's posting mentioned. They are not out of the liquid MTX yet at our clinic / hospital. The shortage is only affecting the liquid form used for IT - not the oral form. Regarding the zofran shortage, I have not heard of that. If your son, Ben, (my ALL son is named Ben also ) does not like to take the pills - there is a great meltaway zofran that my son used to take and it works just as well. I like the brand TEVA as it tastes better than the other brands. It would just melt on this tongue. We have an tap on Friday and they are not changing our day - but it seems they might be moving others because they mentioned grouping to avoid any waste.
Thought I'd post a couple of updates that I have recently found here.
First, a couple of the manufacturers have ramped up production on the preservative-free methotrexate (PF-MTX). You can read the press releases in the following links:
Second, the COG has released a letter to the Children's Cancer Community stating that though a solution is on its way, they will not be satisfied until all treatment centers have enough on-hand. You can read this letter here:
Third, here's a link to St. Baldrick's site that tells us what we can do in order to continue to make our voices heard:
Hope this helps to relieve your minds a bit!
Message was edited by: Angel03
Hopefully, I am sending this email out to everyone, I rarely go on this site. But, I wanted to share an email that I crafted to my friends which allows them to easily contact Federal Congress and Federal Reps by email about the MTX shortage. Obviously, you would enter your child's pertinent information at the bottom and throughout the letter, but thought I would send along as a template for anyone who would like to start making some 'noise' in the system. I think it's important that we rally against this and make it personal. Anyway, feel free to use if you like. Thank you to the person who posted the link to this form, it is fantastic and makes it so easy for our friends to contact government. I also talked via email to the VP of Communications at CureSearch (to thank her for posting the form) and she said they are hoping to release an announcement very soon that the preservative free will be batched and released soon. Obviously, this does not solve our long term issue, but. My son is having a tap tomorrow and they have enough for him, thank god. I hope others are finding this to be the answer for them as well.
When chemo is taken orally or through i.v./port., it does not penetrate the 'blood/brain barrier' which surrounds the spinal column for protection from typical illness. To ensure that the leukemia does not spread to Ben's nervous system and brain, he requires an extensive number of spinal taps which involve injecting this medication into his spine. This injectable version of the drug is the form that is experiencing an immediate shortage. Ben underwent 12 spinal taps in his first year of treatment. His current schedule involves 2 spinal taps every 3 months, for a total of 28 by the end of his plan in April 2014. I tell you this level of detail to explain how incredibly critical this medicine is to a child's prognosis and overall fight against leukemia. Our spinal tap scheduled in two days is safe, but future taps are in jeopardy. These are not my words, these are the words of our doctors. In our case, Ben has already been forced to eliminate another critical chemo medicine early in his treatment due to a severe anaphylactic reaction from the first drug, followed by acute and severe pancreatitis due to the substitute drug. We, obviously, do not want him deviating any further from the strict and effective regimen of his clinical trial.
If you could take five minutes today to complete this easy, online form at the bottom of this email - we would greatly appreciate it. I am hoping that the Federal Government steps in to alleviate this situation but in the meantime, the hospitals are taking every measure to maximize how we are using the drugs including 'clustering' children for their spinal taps so no medicine is wasted. The current manufacturers seem to be responding but they are up against FDA constraints for approving necessary capacity increases to offset another manufacturer's plant closing, along with increased demand.
Please review the article below as it explains the situation best:
Our clinic has asked us to create a 'call to action' and that is what I am doing with this email. The link to the online form is below. Your entry will send an email to our Federal Senators and Representatives specifically on this time sensitive issue. NOTE: do not use the green links on top, simply start reading at the center of the page and scroll down. You do not need to change any portion of the letter itself, just simply complete the open fields on the page. The information you will need to personalize your entry is below:
Diagnosis: Acute Lymphoblastic Leukemia
Date of Diagnosis: xxx
Age at Diagnosis: xxx
Child Is: Currently in Treatment/Newly Diagnosed (please look at options on link to properaly advise your friends what to enter)
People who know me well understand that this is a really difficult email for me to send - asking for help in this manner. So, I thank you for your understanding that it's a call to action for all children in this situation, not just my own. Mama Bear has taken over.
I thank you so much for your time and energy.
I have called my state Senators' and Representatives' offices. This is what I learned today: The Senate bill has not moved anywhere since the committee hearing back on December 15th. The House of Representatives has attached the bill as an addendum to a transportation bill (3889) in the hopes of moving it through more quickly than leaving it as a stand alone bill. I can't pretend to understand why this would be so, but I'm not a politician. The bill would require companies to inform the FDA if they are anticipating shortages of prescription drugs, so that the FDA can come up with alternatives and ideally circumvent the shortage. As far as I can tell, this appears to be a band aid approach to a deep problem, but at least it is a step in the right direction. I have asked to be kept informed of when the bill moves out of committee, and I will keep everyone posted on anything I find out. If anyone hears anything different, please post it here.
My daughter also requires IT Methothrexate. She is due to recieve it at the end of March. Our clinic has already mentioned they may change the date a bit so none is wasted. I have a question for anyone on the boards. I would like to contact my congressman about this and was wondering if anyone had a letter they had sent or a list of facts I could use to write the letter. I just want to make sure I get all the correct information in the letter. Thanks.
I have a letter, but it's on my other computer and I can't get it for a day or two. Curesearch, St Baldricks and Pac2 have sample letters on their site - from St. Baldricks, you can send the email directly to your legislatures. The sample letters talk specifically about the methotrexate shortage.
I added some specific legislative asks to mine as well, which are all supported by St. Baldricks, curesearch, Pac2, etc - 1) support the Preserving Access to Life-Saving Medications Act and do what they can to move the bill (to require drug companies to notify the FDA of potential shortages in advance) 2) to support the Creating Hope Act of 2011 (to incentivize drug companies to develop new treatments) and 3) to join the Childhood Cancer Congressional Caucus.
Methotrexate shortage is affecting my son's treatment. Methotrexate is also being used for Abortion. Let's not hope all the supply doses are being sent to clinics for that purpose. Let's tell our congress to never let this happen again. I would like to know if Planned Parenthood has stock piles of the drug. I have called around and spoken to a lot of people. No one can tell me the last time they received any of it. This drug has been around for 50 years. If the patient doesn't get it when they are suppose to Leukemia will develop in the spine and than go right to their brain. You figure out the rest. I'm not trying to fight the abortion battle. It's not my business. Take care of children is a big responsibility. It's not for everyone. But, Leukemia gets very little attention. Doctors/Oncologists all over the country are livid that this is happening. My son has only a year to go after the 2 and a half years he has already gone through. You may know someone in the future that this will affect. We will know by the end of the month if any new shipments are sent. If not than a real panic is going to happen because most medical facilities only seem to have enough to get through March and early April. My son will have to have a "LP" in early April. Let's pray they hospital has enough. Some doctors are talking about cutting back on dosage to preserve some. Not a good idea!!!
Ben Venue Labs was given the "EPA" award 3 years ago by Governor Strickland. The Governor and EPA went on and on how great the labs was. Like it was the best in the business. Now it's a DUMP? Really? A lot of questions have to be asked. I have made so many phone calls to why this is going on and everyone tells me it will be resolved in 2 weeks. Ok, that is a cop-out excuse if I have ever seen one. No other drugs have been stopped being made unless they have a recall for some adverse reaction they are causing to someone.
Yes, as others on here say other people battling cancer need MTX as well. They should not have to suffer either. Methotrexate does suppress your immune system as well. My son has to do a breathing treatment called Pentamidine every month so he doesn't end up with pneumonia. You are easily subjected to catching other illnesses as well because Methotrexate is shutting you down. But, people being treated for cancer don't take Methotrexate for a 1 time deal. If it was that easy and fast of a cure than we would never see cancer last that long in anyone would we. Here's your evidence about the procedure that got expanded in 1993 for all purposes. Thank you, Larry
Methotrexate and misoprostol use is a two-step method
Larry1826, can you please go into more detail about how your son's treatment has been affected? Thus far, I have not heard of any children that haven't received their IT MTX and if he isn't getting it, the media definitely needs to know.
Also, can you please provide where you got your information about MTX being used for abortions. I am aware of two "abortions" (to use the technical term) where MTX may be used. (1) Ectopic pregnancy and (2) molar pregnancy. Both of these are cases where the product of conception is not viable and the mother's life is in immediate and grave danger. I had the misfortune of experiencing a molar pregnancy a year ago and it was a terrifiying experience. I was fortunate that I did not require MTX, but I have met many women that did need it to kill cancerous cells that spread throughout the entire body very quickly. These women's lives are in just as much danger as our children's, so it is completely unfair to make the statement that you did. If, indeed, MTX is used in other, non-life threatening situations, then please provide more detail about those instances.
Please do not get off focus here. Are we all fighting for the same thing or what? The bottom line is all that matters right now and that is that there is a shortage. As parents we're just not going to sit around and play around with this. Pills or injection only can lead to shortage of pills as well. They are closing plants down. This is very serious.
I am not saying MTX is not injected into our children's spines. Lauren has already had something like 20 spinals. I'm saying I do not think the MTX used in some abortions is injected into the spine. The link Larry posted referred to oral MTX which is not in shortage situation. I said maybe I'm naive, but I don't think the PF MTX our kids need is being shipped to abortion clinics; meaning the abortion clinics aren't using PF MTX. Perhaps I was a bit vague in the first few sentences of my post and did not make it clear, but I am well aware of how many times PF MTX is injected into our children and I have been there holding down Lauren while she moans and groans and cries, then thankfully doesn't remember it. If you read the rest of my post I am also worried about the shortage of other drugs needed by not just our kids, but others. Versed is used for Lauren's spinals and was used when I had surgery last fall. It is one of the very basic drugs in short supply. I have nightmarish visions of PF MTX becoming available, and no sedation medicines. I am well versed in the treatment of ALL leukemia, as Lauren has been battling it since 7/30/10 and I have been with her every step of the way. I have dealt with Down syndrome and the world of special needs since her birth. I am not a cold hearted person or a poser on the board. I have been pounding the pavement to bring awareness of childhood cancer and the drug shortage. I am also worried about the shortage of other drugs and can't believe this is happening in this country.
I'm very glad you went into more detail about your situation. I know it must be very hard for you to open up like a lot of us have. Most of us like myself have just been trying to get through our children's Leukemia day by day. We aren't the type to be spiteful and mad at the world. But, so many of us are concerned because we see that a lot of things are starting to crop up that are going to be problems for our children getting treatment in the future. The day after I found out about the Methotrexate problem 2/14/12 I went into my walgreens pharmacy to get my son's 6MP. The Pharmacist said well we only have 5 on hand. There is a "Back Order" on it by Mylan. She said she will have to call around. I told my clinic and they called the pharmacy. The next day Walgreens had a new contract with another company. I got the 6MP the next day. If we don't start being vocal than nothing will get done. It seems like the people that get things are the ones that speak up. Our healthcare is falling apart but we shouldn't be the victims. We work hard and pay our taxes. T
The 6MP can run a bit low sometimes and there have been a few shortages both here and Canada in the last few years. But the pharmacists and doctors will call around and work it out. We have had to wait a bit a few times but never missed a dose. Nor have I heard of others missing doses. It is all frustrating for sure but unfortunately I do not believe you are going to discover a reason for it all and frankly we are all incredibly lucky as occasionally you will read on this very board from a parent in a different country that does not have the needed medicines or tests.
Hang in there this is a long battle. I distinctly remember being in the clinic in the first month of this nightmare being so frustrated while waiting for lab results. I could not understand why it was taking 2 hours and I just had to know now that his numbers were good. Well my agitation was getting so much that my wife finally told me hey you cannot piss these people off as they are doing there best and we will be working for them and depending on them for the next few years. She was so right. We get excellent care and are treated great both at our clinic and pharmacy. Yes we still have to wait so long sometimes. But we often see why as a new family is there or they are upset and need more help. Or a kid is really struggling and ours is not so we don't get the full attention of the oncologist.
Seriously hang in there we have to trust the system as they give us the drugs to keep our kids alive.
LOL. You sound like my husband. He doesn't understand why healthcare isn't run like other businesses. It's usually just Lauren and myself at clinic visits, but he's been with me for every unplanned ER run. He is SO impatient and it just makes the anxiety worse for me. I am a much more patient "people person" than he is under normal circumstances and you add the stress of an ER run and we're quite the pair. When in the ER or inpatient he expects someone to come the INSTANT the iv machine beeps, etc. I tell him the same thing---they have other kids to worry about, when it's our turn we'll get their attention, every time Lauren has had something really serious they are in here taking care of her. Let's just say if I get impatient with a nurse there's good reason. LOL. Like the one on the oncology floor who seemed totally confused by the fact we needed our pills crushed. Really? In a pediatric hospital? I finally told her to bring them to me because I can crush any pill, any time, anywhere. She kept telling me chemo pills couldn't be crushed and I kept telling her I have asked her onc and he is fine with it. Sometimes when inpatient I am so tempted to just bring her meds with us and administer them myself. Sigh.
I've found that our Walgreens has been out of all kinds of prescription drugs lately. I finally asked if their management had changed, because it seems like whenever we need a prescription filled we have to wait until the next day and I was told the manager had left and a new person was figuring out the order system.
I'd like to echo Jon's comment about the 6 MP. There were a number of times when our prescription could not be fully filled right away, and our pharmacist had to call around. It might have taken an extra day to get it filled, and sometimes it was a partial refill to get us enough until when their regular manufacturer fulfilled their next shipment obligation. I found that pharmacies with good relationships often share meds with each other. But we never went without. And if you have been on this forum for a bit, I believe a number of people have gone through similar experiences. But I don't believe any child was ever forced to go without. So for those now experiencing something like this for the first time with the 6 MP, this sometimes happens. But is has never been the situation like what recently occurred with the perservative-free mtx for intrathecal injections.
On the other hand, there was the ARA-C scare last year when adults who needed it were in danger of not receiving it because the scarce supply was being saved for the children, propofol was also scarce at one time, and now I hear of some zofran and IV morphine issues. So we all have to continue advocating for a better system for alerts and distribution when shortages occur in drugs crucial to our childrens' treatment.
Btw, on the zofran issue, my daughter never received it before LPs -- the sedation combo they used didn't seem to cause nausea (they used propofol and fentanyl). And she was a child who was constantly nauseated on other chemos, and usually was on a number of anti-emetics. Perhaps other sedation meds are more nausea-provoking? Also, her intensivist (who always did the sedation for the cancer kids) was adamant about using the brand-name proprofol, and not its generic, diprivan. He said that proprofol was vastly superior. It could be that diprivan causes nausea while propofol often doesn't?
Finally, Jackie, please stick around. I've been on these boards for three years, and it has been an INCREDIBLE source of support. Always feel free to ask any question, no matter how seemingly big or small, or to come here when you simply need support
Thought I would chime in about missing chemo due to "national shortages". Although I personally do not know this child, I am sad to say he missed chemo on 2/12 according to his Caring Bridge. http://www.caringbridge.org/visit/nicklascarter/journal
Check it out yourself. Several patients in Buffalo are no longer given any IV anti nausea meds following LP's and told that is because of national shortages, but I really suspect it is an insurance reimbursement issue. The substitute IV meds are very expensive (IV Kytril was $600 on my last bill) so we are only offered oral anti nausea drugs. A momcologist on the FB board deserves credit for pointing out that NPO is only need 8 hours before gen anesthesia and there are plenty of anti nausea meds that give long coverage.
I have had a few passing conversations with my provider in clinic about their strategy for managing their supplies, but I made sure the case manager from the Blue Cross write in her notes how disgusted I am about insurance companies not going to bat for us about this.
I had 2 MTX "injections" to terminate an ectopic pregnancy. It was not the preservative free MTX.
I've read the link on Larry's post and the MTX given is given orally (no shortage of pills) and sometimes an injection. I'm no medical person, but I sincerely doubt the injection is given into the spine, so doesn't need to be PF MTX. Maybe I'm naive, but I feel confident the PF MTX needed for kids with cancer is not being shipped to abortion clinics. Pediatric bone cancer patients need a lot more of the PF MTX than our kids do, sadly. But there are more kids with leukemia. All the way around the shortage is sad and I have contacted my representatives, called the manufacturers, called the White House hotline and spoke to a person and did an interview for our local news. Now I just pray that all kids who need the PF MTX get it. My heart breaks for newly diagnosed parents to be facing the daunorubicin, ARAC, iv zofran, versed and the IT MTX shortage. So hard to be told your child has this monster, then the meds needed to aggressively attack it in frontline treatment are in shortage. Many of the drugs on the shortage list are common, everyday drugs used for sedation and anesthesia. Scary to think we are in this situation in this country. Underscores the need for research to come up with new, better drugs with fewer side effects and more money to be made on them by pharma. Sigh.
Anyone knows if the shortage is world-wide?
Some news (may have already been posted...)
Are you serious? You doubt they need it for the spine? So this terrified father is making it up? I'm pissed right now. Yes THEY DO need the injection MTX for the spine! They are called LPs!!! My son needs and is scheduled for 5 more for the next 1 yr and 4 months to be cured!! If you're not familiar with this situation or Leukemia DON'T COMMENT
Just wanted to jump in and voice my opinion that Robbie's comments seem to have been misunderstood. I think she was saying that she didn't think the MTX used in abortion cases is injected into the spine, ie it is not affecting the supply for our kids. She, like the rest of us, knows very well that the MTX used for our kids' LP's is the PF-MTX.
Hope I'm not stepping on toes by speaking for Robbie.
I know this is a bit off subject, but not totally. I have been following this closely and hitting as many people as hard as I can about this, (pharmaceuticals and local and federal government), along with anyone who is networked with me. My daughter was just dx with B-ALL on Jan 20. So we are in front line and are/were willing to move where ever we had to to get PF-MTX (do you know you can get any drug you need from India without a script)? I was told this by my boss who was born and raised in India. Along those lines, I am a vet tech, and have a huge hand in ordering drugs for the clinic. The animal drugs are same as human, exactly, and I looked up PF-MTX, and yes it is used in the animal world. I just got word today that the shortage has been cancelled, and got mixed messages from my Onc vs his fellow, vs my Nurse Practitioner, vs my Home Health RN, so I didn't follow the road I would have if the shortage affected Madeline's tx. But I assure you we sent emails and made phone calls like crazy! Anyways, I was going to call my pharmaceutical reps to see if they had access to the PF-MTX, at which point I would have ordered them, and then freaked out that they were available to animals and not children! That being said, I also have heard and read about shortage of Propflo (used for our kids' sedation). I guaranty that there is not a shortage of that on the animal side, so I do not want anyone to worry about that one, its available! I am still going to talk to my rep though about the PF-MTX, just to see what their availability is/was, I'm super curious! This is unbelievably scary, and has been an emotional roller coaster, first the dx, then the hopeful prognosis, then dealing with steroids and induction, then hearing of the shortage (it was like hearing the dx all over again!), now hearing it has been taken care of. It's so frusterating, but I have to believe that there is NO WAY that a life saving drug would not be produced to produce other, more expensive drugs. I would like to believe that would be cause for a major class action suit or something. (Now time for venting). Aren't the people at the pharm. companies doctors? I do not know much about it, but I would think they would be pharmacists or some sort of doctor...didn't they have to take an oath? My daughter would not miss one tx of this drug without a huge fight here!
Margaret - Hoping you get a chance to give us an update on the FDA event. If I was near DC I would definitely want to be there.
This board is the place I go to keep my sanity I have no idea why this helps but it does for me and I am guessing many others. Can we all please try to focus only on the issue at hand and not bring in outside issues? Hey it is a free world post whatever you want but my point is I personally think it is bad for all of us if we get political on here. I know that if my child was just diagnosed I might be sort of freaked out reading this thread myself.
Amen, Jon (sorry, don't want to bring religion into the fray along with politics;) !
My head felt like it was exploding just trying to read through this thread and all the political tangents, etc, that were thrown into the mix.
All, let's stick to the facts. Last I checked, EVERYONE posting on this board had a child with cancer, and we all have children getting LPs, intrathecal Mtx, etc. When we start getting political and partisan we become divisive and risk alienating people who really, really need our help and support. Everyone's entitled to their own political opinions, but let's keep this forum as nonpartisan as humanly possible.
Jackie, please read some of my post. This isn't a money issue. New drugs cost a lot of money because of the money that has to be recovered from all the R & D that was put into it. Also, to cover any litigation from people that don't respond well. Once the Patent runs out than the generics start and the price comes down. Look at the price of flat screen TV's. 10 years ago you would pay $8,000 for a 25 inch screen. Today you can get a 60 inch for $1,200. This has nothing to do with money! It could have more to do with the cost of cancer and those who want to ration Meds. We know there has been talk in the last few years about it. Let's not be caught off guard. The FDA knew by shutting down Ben Venue labs there would be a shortage. They produce a lot of it in the market. They should have asked how many customers will be affected and contacted the other labs to help out and produce more.
I'm sorry if you took my venting as something else and if I do not have all my facts as strait as I should, but I'm only 4 weeks into this battle.I thought this was a place I could finally go to find some support without being talked down to or judged, especially when venting out of great, but I guess not even this is a safe place for support.
Please keep coming here for support, and I hope that you find lots of it here as you make your way through this. This board was a huge support for me when my DD was in treatment, and I hope that it can be that for you too. There are some wonderful, caring, wise mom and popcologists here who have been right where you are, and I know that they will be here for you, as they've been for me.
Wow, I've tried to follow this thread but it's 1) complicated 2) convoluted and 3) creating a sense of hostility that simply has no place here. I've been coming here for nearly 3 years, and Annie.zz is absolutely right - this is a place full of supportive parents who share the common goal of providing the best care for their cancer kids as they can without going completely crazy.
Jackie - please don't let this completely jacked-up thread reflect poorly on the good that can happen here. This is a place where you can feel supported.
Robbie - I know you are one of those caring parents always eager to help others, and I'm so sorry it seems like one of your messages was mis-understood.
Jon and Ann - couldn't agree more with your posts about keeping politics out of this forum. Hallelujah.
Larry - "please" take a moment to reflect on how your posts may be creating hostility and doing more harm than good at this point.
Everyone, my advice is to stick to the information reputable groups and your own clinics are providing about the shortage and continue to advocate for your kids with all your might.
Cha-ching, there's my two cents.
Agree Agree Agree with Kristen. It is important to carefully read posts before replying as well. I saw an example of a carelessly read post that lead to hostile words to a fellow journeyist. We are not the enemy and nobody here created this drug shortage. In fact, I would venture to say we all wish we had no need to worry about it. I have always loved the warmth and positive atmosphere found on this board. The open arms and accepting attitude of everyone has been invaluable. We have had many people from all walks of life and all kinds of perspective on the world and I have not seen the discussion devolve to this level before. It would be a very sad thing to lose the wonderful comfort of this resource. Please remember, most of us come from a fragile place, treat each other with kindness and always assume the best in the other person. OK- maybe I am a bit preach-y. I just hate to see this place become one where you have to carefully weigh every word and worry that someone will jump on you when you just want a little advice.
Agreement from here as well. It is our human nature that is lashing out without thinking things through first. I have thought from the begining how challenging the chemo shortage must REALLY be for those with a new diagnosis. There is so much to learn upon learning of your child's blood cancer diagnosis. Its very difficult learning the terminology, medicines, personalities of providers, comfort medicines, and then there is actually taking care of your sick child! Ultimately, I needed to learn to trust that this treatment process will result in a my child being restored to full health. And that is the why the methotrexate problem is so profound, the trust has been broken because the policy makers did not have enough insight to foresee this situation.
Larry I am with you on this. I'm disgusted by some of the responses of your post. We are crying out and taking action for the lives of our children AND all the children. I don't even want to hear from anyone who is not in this situation personally. One didn't even believe that they need the injection and spine! Why are they even on this leukemia society forum then? As yourselves we also have been fighting this for 2 1/2 years and winning. Our son only has 1 year & 4 months to be cured. The threat of losing the methotrexate after being told for 2 years that you'll be able to keep your son is terrorizing!!! We need HELP and a lot of it in this situation as it is not more problems. -Teresa
I am chiming in late but have been trying to follow your thoughts since the first post. I want to say that of course as parents of children with cancer we are on your team about drug shortages. I think part of what is happening here is that your posts seems to run off on convoluted and complicated tangents that are hard to follow. Another thing I have noticed is that while you are complaining that "WE" don't understand your posts "YOU" seem to have difficulty following the point in others comments.
For example "Nobody said "our kids" don't get MTX in spine " what was said was that abortions don't require spinals or PF MTX"
As much as you are complaining that under handed and twisted politics and business practices are involved in the shortages in my opinion "you" an educated "political scientist" seem to be adding the abortion information to our kids as a way to develop attention and perhaps sympathy.
One more thing the point of this forum is to support each other, so while you may have ruffled some feathers with your sometimes incoherent and some would say"bullying" posts You are "welcomed" here and we all hope your son has nothing but success in his treatments. I just hope you have not "scared" away other parents that "need" our help and aren't quite so "defensive"/ "offensive"
Not sure how others have been affected by the shortage but I thought I would share what's happening at our hospital. After being told not to worry, I received a call last Thursday stating that the shortage has reached our hospital and is only with the PF-MTX. My child's oncologist said while my daughter is "safe" for her next two treatments, children 10+ and in maintenance will be receiving a 50/50 mixture of the MTX with presevative and without. The doctor said if they don't get the shipment they expect to get in early March, they do not know what will happen but most likely the COG will alter my daughter's trial roadmap. Terrifying news!
On a good note, St. Baldrick's released a letter from Congress to the FDA so looks like our voices are being heard. For those interested, you can find the update and letter here: http://www.stbaldricks.org/about-us/headlines. Will stiill be contacting our local media and politicians to gain more support.
Praying this issue is resolved with minimal issues and in a timely manner though am extremely concerned that the pressure on the drug companies will produce mass recalls. Also am concerned the trials dependent on this drug will be thrown out the door. Praying something good comes out of all of this and wishing everyone stay strong through it all!
PF-MTX is preservative free methotrexate. It's the liquid, injectable form of methotrexate that is used for intrathecal administration (spinals) and for ALL kids and other who get high doses of the drug through IV.
the preservatives can cause reactions, especially when given in high doses and when given in the central nervous system. Because it's preservative-free, it can't be stock-piled as long, and it takes more care to produce and package.
I hope this is true. And the quality of the rush order drugs is good. Sigh. Breathe.
I just spoke with "CureSearch" and they said the FDA is taking the "Shortage" status off. Let's hope it's true and we don't get into this situation. But, when I went to the Pharmacist last weep to pick up 6MP they told me MYLA was on back order. They did get a new contract with another company. I brought up about the Methotrexate situation as well. I was told "Well you know these drugs cost a lot of money to make." I said "They have been around for years and now all of a sudden there's a problem." "We don't hear about any kind of problems with other drugs unless the are recalled because of side effects. If we all didn't speak out this would have gone unnoticed like it did in November, December and January. Why because we aren't in the news every day trying to get things moving like "Occupiers." We are trying to live normal lives and do the best for our children. We try to not let "Leukemia" get them down or in their way. I had the pleasure of coaching my son's "Flag Football" team this year. No one knew of his Leukemia situation. He played awesome!! Yes we do have some bad days like a fever or Vincristine Chemo bothering the back of his feet. But, we just keep doing our best to keep our Leukemia children happy. Great job everyone but as you can see because of the Methotrexate shortage we have to fight another battle we shouldn't have to.
We wanted to ensure that you have the most up to date information on this situation. Yesterday the FDA posted the information on the shortage. Here is a part of what was addressed:
First, FDA has prioritized review of and approved a preservative-free methotrexate generic drug manufactured by APP Pharmaceuticals and expects that product to become available in March and continue indefinitely. Second, Hospira expedited release of additional supplies, resulting in 31,000 vials of new product – enough for more than one month’s worth of demand – being shipped to hundreds of U.S. hospitals and treatment centers today. FDA is actively working with other manufacturers of methotrexate who have also stepped up to increase production in order to meet patient needs, including Mylan and Sandoz Pharmaceuticals.
If you would like to read the entire press announcement, please click on the following link:
My intention in initiating this thread, twelve days ago, was two-fold. First was to inform the community about the shortage of preservative free MTX. Second was to create a thread to succinctly record specific instances where treatment was impacted by the shortage.
Unexpectedly, one member who is clearly dealing the nightmare of ALL crossed a line that dominates greater discourse in our country, This time in the context of a shortage of a drug critical in protecting our children from CNS relapse. Until now I have refrained from responded, as I felt the the community could see past the details of one member's ill-conceived passion. Like any cross-section, this community is composed of members of varying knowledge, education, belief systems and understanding. We are all bound by our children's endless and torturous fight for survival. Of course there is passion that is sometimes off-putting. We all need to look past any political, or more often religious language, to the underlying intention. This intention is the search for the easiest path to our own child's survival and supporting others in this most horrible situation.
It was not until another member voiced support this misstatement that it was clear that things have gone awry. I would like to commend Robbieh in her initiative and restraint in clarifying certain facts. As the context her response was not explicit, it served to ignite an unfortunate dialog.
Larry, you may not understand why, although I found some aspects of your posts constructive, I found others other aspects misguided, ignorant and offensive. I do, however, appreciate and respect your intention, passion and love for your son. Please continue to monitor and search this board, as there is valuable information here that can be very helpful to your son and family. If you have any questions or value to add, please continue to post. If you have a something to provocative to say, please say it, but have the courtesy to qualify these statements as a question or an opinion. Although I personally support abortion rights, I do agree with Larry that if there were competition for a drug, it should first go to children with critical needs. However, this is not the case here. The stated correlation between the shortage of preservative-free methotrexate used in intrathecal injections and supplies of other forms methotraxate used elsewhere in medicine, has been debunked.
It might be better if we made an effort to keep threads focused on their original intention and spawn new threads for associated discussions.
I have an idea. Let's stick a fork in this discussion and say it's done. Wavy good bye. Toodles (to borrow from my mom). Au revoir. How about if anyone has new knowledge, learns that their clinic does not have enough MTX for all the kids, or some other necessary drug is unavailable at your clinic start a whole new post. That way maybe we can escape the bad karma from this thread. It started out well, but...