I just went back through the archives and found a few of the threads about vincristine. Just wanted to post again and see if there were any updates.
Here's our story today: Elsa (19 months, pre-b ALL) finally started IM 1 today with a dose of vincristine and her first dose of IV methotrexate. She cried the whole way home from clinic (20-30 minutes) in her carseat, but finally fell asleep about 5 minutes away from home. Since it was nearly bedtime, I took her out of her carseat to get her changed into her jammies/ready for bed. That's when all hell broke loose. She was totally hysterical, arching her back, screaming, and totally rigid in pain. She doesn't talk yet, so she couldn't tell me where she was hurting and she wasn't pointing to anything in particular - just arching her back and screaming. She cried (I hesitate to even use the word 'crying' because it is not strong enough) for about 45 minutes. We tried to give her a dose of morphine, but she spit it out/choked on it. Finally, I took her outside and, in a really enthusiastic voice, started giving her a silly tour of our condo complex - stopping at all the Halloween decorations and acting like a big clown. This finally calmed her down enough that we could get a dose of Morphine into her and, meanwhile, we had called the on-call Onc - who basically just talked us down from the brink of hysteria ourselves.
Elsa has had problems with vincristine in the past with crying, pulling at her feet, and hitting the sides of her head (jaw pain?) and we have previously treated her with morphine. Usually, we have to give her morphine for Days 1-7, once or twice per night, after each dose of vincristine. During the day, she is her normal self, though she has a hard time napping - i'm guessing becuase her feet bother her more when she is laying down. Night time is rough though.
We are going to talk to our Onc about Neurontin tomorrow - or from the sounds of previous threads, maybe we should ask about Elavil too. Anyone with a really good experience with the Elavil?
Anyone else with kids who have really violently painful reactions to vincristine? Toddlers or pre-verbal kids, especially?
For those of you whose kids take morphine/other narcotics for pain, how often do you give them when they are really having problems? The prescription says every 4-6 hours . . . tonight we might actually have to live by those parameters.
Any other thoughts on vincristine? I know that some of you have had doses withheld during treatment - what was the "tipping point" where your Onc said "no more vincristine."?
I'm convinced there is just nothing, nothing, nothing worse than seeing your child like that. . . . She's finally sleeping for now, but I know she will wake up again. Hoping for an easier time getting her to take the morphine next time.
Thanks for listening. Sorry such a long post.
We briefly did the codeine/ondansetron around the clock for pain/nausea, which I think was every eight hours, at least for the latter. It does help to get 'ahead' of the pain.
My son is a teenager, so communication was a bit easier. I am so sorry for those who have to figure this out with a young child.
I'm betting you've already read some of my prior posts about Elke's issues with vincristine. So sorry to hear about Elsa's pain. You're right -- there is almost nothing worse than seeing your child in agony and being helpless to stop the suffering.
We would give Elke morphine every 4 hours when the pain was at its worst. And I can tell you that it really only seemed to last 3 hours -- I could tell immediately when it was wearing off, and it was usually around the 3 hour mark when Elke would start experiencing bad pain again. DO NOT feel bad about dosing her as frequently as you are allowed to. If they tell you you can give it every 4 hours (like they did with us), then they have decided that that is a safe dosage for your daughter. (Caveat: morphine made Elke nauseated and itchy. I almost always gave her zofran and/or hydroxyzine (antihistamine) with every morphine dose. Morphine can also be highly constipating. If Elsa has had issue with constipation, make sure you are treating it proactively).
Ask your onc about Neurontin and Elavil. As you may have read, Elke started out on Neurontin during Induction, but it never really adequately addressed her neuropathy, despite increasing the dosages a number of times. Our chief onc and Elke's neurologist both feel strongly that Elavil is vastly preferable for the treatment of neuropathy. It seems to have worked better for Elke, although it, too, never quite took away all of the issues (Elke is still on it, OT, for residual neuropathy). Some people have been prescribed Neurontin or Elavil just for the period of time around the vincristine doses, but our drs feel strongly that it should be taken on a daily basis throughout the month for significant cases of neuropathy. Also, they both should be tapered up and down, so it would be difficult to do so if they weren't being taken throughout the month.
"No more vincristine" first came from our oncs at the end of Induction when Elke experienced vocal cord paresis (partial paralysis) so badly that she was constantly choking and having severe episodes of apnea (would just stop breathing and turn blue). She also was completely unable to walk or stand at the time. So the first several times they held the vincristine was due to physical, motor issues. We did have several times when vincristine was held or reduced just due to pain constantly requiring narcotics, the last being a month or two before she went off treatment. That last time I had actually asked them if they would consider cutting her dose (which they had done many times in the past), as the pain had been extremely severe recently and required narcotics consistently even after that first week or so. I would not hesitate, if I were you, to broach the subject of perhaps reducing Elsa's dosage in the next go-round. But first I would see how long the severe pain lasts, and how often she requires morphine. Make sure you're writing everything down so that the onc can have an accurate record of her reaction to the vcr, so that an appropriate decision can be made about what to do next time.
Hope she feels better soon. IM was a horrible phase for Elke. I know some thought it was not all that bad for their kids, but it was pretty horrendous for Elke. It may be a time when Elsa needs more supportive meds to get her through.
My eight year old son is in the consolidation phase of ALL0434 t-cell lymphoblastic lymphoma. His has had very bad nausea and headaches since his Peg and Vincristine last Tuesday. We are using his max dose/frequency of liquid oxyconton and zofran- it barely keeps up with his headache. He says the pain is in the center of his forehead. Keeping him hydrated is tough with all the vomiting, but three times this week he was given IV fluids and that did seem to help quite a bit.
During induction phase, he had major mobility issues that the Dr attributed to Vincristine. He would just fall down with no warning (when I absolutely had to take him to the store, he used one of those motorized things... he still had all his hair and seemed happy enough, so everyone stared at me like I was nuts). He said his legs felt "wobbly". For several weeks, he could only walk very slowly, for short distances- we are talking bedroom to bathroom, maybe 15ft. He said it hurt when he stood up or layed on his back. At one point, his right are was having tremors/shakes.
My heart goes out to you!
My situation was my own, so not sure how much it may apply since I'm an adult. Vincristine messed up my fingers, and I was prescribed a nerve drug, which didn't work, so I switched to Lyrica, which didn't work at first until my neighbor (a neurologist) suggested I increase the dose. He said that many oncologists don't really understand nerve drugs and he thought my dose was far too low. I kept increasing the dose (close to the physician's desk reference max) until I got results. Then each month I would decrese the dose until I was off Lyrica.
Point - seek a neurologists' opinion and see what advice you get, it might be far different from that of the oncologist. My primary care physician too didn't really understand the dosing, I educated him, as well as the oncologist, on how high I could dose. My neurologist neighbor saved my sanity because AT NIGHT the pain was worse. I theorize, and my neighbor seemed to agree, that keeping the brain stimulated also helped (I think your distraction helped because of this) because part of the brain is 'occupied' by other stimuli so the nerve pain sensations get less 'attention'. I notcied that when I had a conversation with someone that the pain was less.
I hope you find a solution soon, and if my experience helps in any way then that is what this site is for.
Thoughts and prayers for you all!
I didn't read all of the responses but Ann gives really good advice. The thing about narcotics is that they work better if given around-the-clock. If you wait until the pain starts, it is much harder to get it under control. Of course this rule of thumb is for when you know to expect chronic pain. At this point in treatment it is really hard to know what to expect and how bad it will be, so you refrain from giving meds in hopes that the pain won't come and then you look back and wish you'd given them. It's something that you just have to figure out over time.
Emma used neurontin throughout the first two years of treatment because she did have the 'all over' pain from Vincristine. As verbal as she was, she just couldn't put into words exactly what hurt. Between that and the codeine we were able to keep the pain manageable. As she progressed in treatment we were able to take her off neurontin but she stayed on codeine during the week following Vincristine right up until the end. We also had to give a stool softener with it because the Vinc, the codeine and the Dex all cause constipation which just complicates everything.
Hope that helps and that you are able to find what works for Elsa.
Edited to add: I posted this on your blog but I'll expound on it here. We gave benadryl at night during Vinc week as well. It helped Emma sleep better than the narcotics did (codeine tended to wire her). It also controls nausea which is an added bonus. I'm no nurse but I think it's pretty much one of the safest meds you can give. Someone correct me if I'm wrong about that. Keep in mind, though, that some kids spaz out on benadryl. Might be better to try it at naptime if she's never had it before.
My daughter is a teenager (14), so she is very vocal/verbal about the pain. With that being said, I can empathize with seeing your child suffering and being unable to stop it. My daughter has been incredibly sensitive to the Vincristine since the beginning. By the second week of Induction, she was unable to walk without assistance, was falling quite a bit and unable to do simple tasks with her hands, like holding a pen/pencil, using scissors, and eating utensils, and buttoning/zipping clothing. She has had severe neuropathic pain from the VCR (calls it tingly pain) in her hands/feet most severely, but also has had the severe jaw pain/back pain, headache, and trunk pain from the VCR as well.
As for pain management, she gets Morphine every 3-4 hours. Like Ann's Elke, it starts wearing off for Leann at the three hour mark or so. I can tell, because when she is in the most severe pain she becomes withdrawn and just lays on the couch/bed in silence. We have also added Ultram as a pain reliever because the morphine wasn't cutting it. She was on Neurotonin initially for neuropathy (beginning in Consolidation), but we kept having to up the dose until it was maxed out, so she was swapped to Elavil. Elavil seemed to be working for awhile but within the past two months it became evident that the Elavil wasn't enough, so now Leann is on a combo of both the Neurotonin and the Elavil.
I also second the need to manage constipation/itchiness/nausea with the narcotics. I dose her with Miralax and Kytril/Hydroxyzine along with the Morphine/Ultram to stay ahead of those side effects.
In addition to the peripheral neuropathy, Leann has also suffered from central neuropathy (bowel problems- slow motility caused by damage to her nerves in her esophagus/GI tract- leading to her being tube fed via g-tube) and autonomic neuropathy (blood pressure/temp issues, headache, dizziness).
Leann first had doses of VCR held in Consolidation (did not receive any of them) because her team (GI, onco-doc, neuro) warned me that her neuropathy could be permanent if we contiuned to give her VCR. She has had doses completely held off and on since then and in fact, her team recently made the decision that from here on out (until the end of treatment) Leann is not to receive more than a 25% dose of VCR, due to the severity of her neuropathy.
Thank you all for the thoughtful responses.
So far, we have been lucky this week. After her initial episode of violent pain, she has done great. It's puzzling though. After her consolidation dose of vincristine (Day 1), she needed nightly morphine (just once/night) ever night for the 7 days following the dose. During induction, we were dosing her with morphine, at least, once a day, but that was probably the vincristine + steroids that was making her so crazy. For the past two nights (she got the vincristine Monday), we have given her one dose of morphine at bedtime and she has slept through the night (which is pretty rare for her) and woken up in a great mood. Tonight, I am going to skip the nightly morphine and see how she does. I know that someone suggested keeping ahead of the pain, but I am just so nervous about all this narcotic use in such a young child. I feel like I really need to hash out if she needs this morphine or not. Our nurse also suggested tylenol (checking for temp before, of course), so we shall see.
So far, I am unable to identify any kind of pattern! It is apparent that she is not experiencing the really severe side effects like Elke and Leann have - though I'm always on alert for anything that seems out of the ordinary. Thank you so much for sharing your stories - it SO helps me feel like I am more prepared and better educated. Though, of course, I would rather it not have happened at all, to anyone.
Elsa does a lot of toe-walking and ocassionally hits the side of her head (like her jaw hurts) but so far, she is active and seemingly happy during the day, even without pain medicine. I'm just so scared that, with each dose, we will experience the same kind of horrible reaction that she had this past Monday and, from the sounds of it, vincristine has increasingly awful effects with every dose. *sigh*
Talked with her Onc and he is puzzled too. Her reaction was just so violent and awful (and then over so quickly) that he is not sure exactly what was going on. I had never seen her like that before. He thought possibly vincristine pain PLUS constipation? Who knows. The plan for her next IM#1 appointment is to spread out each medication by two house, so that we can really see which is giving her a reaction. He even wants to spread out the IV Zofran so we are going to have a looooooong day. Counts and Zofran at 8:00AM. Methotrexate at 10:00AM (but who are they kidding? that will really be 11:00AM by the time pharmacy actually makes the darn drug). Vinchristine at 1:00 Wait for another 2 hours. And then tack on the mysterious 1-2 hours of extra time that seems to weasel it's way into EVERY SINGLE clinic day. Ugh. But at least, maybe, then we will have some answers as to what exactly is making her so crazy. Or maybe we will be lucky and she won't have any reaction at all and everything will be just peachy. Maybe.
I was telling my friend the other day: Elsa was scratching her back all day and I immediately started silently freaking out. Oh gosh. Is she having a reaction to something? Is she getting some sort of skin infection? Is she having pain back there? Is she this? Is she that? AH!!! I miss the old days where a scratch was just an itch. I used to be that mom where someone would look at me and say, "Um. Your daughter is eating a mouth full of sand and covered in dirt," and I would reply, "Oh that's OK - it's good for her immune system!" I miss those days too.
Thanks again for taking the time to share your stories and advice. Thank goodness for these boards.
Thank you for all the info here!
Gabbie has had ankle issues more so last winter and had been pretty good with her month dose of vincristine this summer. Last month however she started to complain of some leg pain, and this month increased leg pain, jaw, elbow and then she says that it just all hurts, but her legs the worst. She also started talking about stinging pain and a twisting feeling in her jaw and legs.
I appreciate all the pain managing tips!
Georgia, I just want to say I think you are handling this perfectly. This is exactly what you are supposed to do until you see a pattern and even then you should back off a bit sometimes to see if the narcotics are still necessary.
I remember one time Emma went absolutely NUTS in the clinic room when awaiting her spinal MTX procedure. The doctor came in and saw the fit and after months of me trying to figure out on my own what to do, which drugs to give, etc. and not being able to find an underlying cause for these episodes, she got on the ball and jumped in to help. After that we had the support we needed to figure out where the pain was coming from, how to handle it, etc. It's not an easy thing to do when you have a toddler who can't tell you EXACTLY what hurts.
So just keep doing what you're doing. You're on the right track.
Just thought I would put in a brief update about Elsa since it seems like there have been a few vincristine questions floating around. Wish we could say that we are in a better place, but things have been so up and down that I can't say we have figured much else out.
We did finally get Elsa on Neurontin. We initially gave 50mg. in the morning and 50mg. at night, but they have upped the nightly dose to 100mg. I am trying to avoid having to give a midday dose, just for convenience sake, but I think we might be going there next. Elsa got her last dose of vincristine almost two weeks ago (it was her last dose of IM#1) and it has been rough ever since. It seems that she has peak pain/discomfort/crankiness for about 5 days after the dose and then AGAIN from days 7-10 afterwards. Yes, Do I remember correctly that I read that some other kids had similar "biphasic" reactions to the medicine with two peaks of symptoms? It is still just a guessing game since she is still non-verbal, but I can say that, almost every night for the past two weeks, she has woken up around 1AM and been unable to go to bed again until around 4AM. Ugh. She seems happy enough if we are distracting her with an activity at that time, but if we try to lay down and relax, she just thrashes and cries. So play-doh and books it is in the middle of the night in our house.
I am just absolutely dreading DI, but I guess it is probably not worth the worry since I don't have any control over it anyway. Onward we move - even if it feels like we're crawling sometimes.
On the upside, I started going to therapy! Probably more than anyone wants to hear, but I say so because it has been SO helpful for me. I know it is just one more appointment to remember, but I am trying to take care of myself a little better and it has been a really good experience. It's only one hour/week, but the things we talk about follow me throughout the week in a helpful little cloud. I haven't allowed myself to really "feel" very much for the last five months and therapy is helping me deal a little with some of the trauma we've lived since diagnosis.
My heart has gone out to Leanne's mom and Nana with the recent relapses. I keep up with the boards, but sometimes I am just speechless as to what to say. Your strength is incredible and you are both in my thoughts.
Several things came to mind when I read your update:
First, how big is Elsa? That sounds like a fairly low dose of Neurontin. We worked our way up to 250 mg of Neurontin 3x/day (and yes, I think that mid-day dose is impt) when Elke was three years old and in the 30-something pound range. Now Elke had very severe neuropathy, but that's 750 mg of Neurontin daily to Elsa's 150 mg. Even if Elsa's a bit smaller, it seems like a low dose. I would ask about increasing the dose by putting a mid-day dose in, to keep meds in her system consistently during the day to control the neuropathy.
Second, if she still doesn't adequately respond to the Neurontin, ask to switch to Elavil. Even on 750 mg of Neurontin a day, Elke's neuropathy was severe. The Neurontin just didn't do it for her. And, as mentioned, her chief onc and neurologist both think Elavil is a vastly superior drug for treating neuropathy.
Third, do you give Elsa pain meds when she is like this at night? Our oncs were insistent that if Elke's sleep was consistently broken up like that, she was clearly in pain. Thrashing around and crying are symptoms of that. If you are not already doing so, try giving her something for pain before she goes to bed and see if it makes a difference.
I'm sorry that she's still feeling this way. Some children feel neuropathy consistently throughout treatment (heck, Elke still has it and she's almost 11 months OT). As for different "phases" of neuropathy during the month, Elke's was usually most severe the 10 days after the vcr, then she would have about a week of feeling slightly better, and then it would become more marked again the week before her next dose. Her neurologist said that the vcr would initially damage the nerves and cause pain, then the nerves would be deadened for a bit, and then, towards the end of the month, the renewed severity of the pain was the nerves "waking up" again.
Hope she feels better soon.