[Machelle]

Hi my name is Machelle. I am here looking for advice etc. My 12 year old daughter was diagnosed with leukemia (ALL) when she was 3 years old. She was on chemo every day for 2 1/2 years. She will be 7 years off chemo June 1st. She has so many late effects from the chemo. She has fibromyalgia, migraines and neurophy. I have been homeschooling her for 3 years now. She is really wanting to go back to school this year. I want her to try but I really don't see how she can handle it. My main concern right now is for her health. She was put on neurontin a month or so ago. It has really helped her neurophy. It has not completely taken it away. My daughter knows when it is time to take the neurontin again because her legs and feet will start tingling and burning again.
My concern is for a while now she starts to get dizzy, fast heart rate, hot or cold sweats, light headed, shakiness, nausea headache and shortened breath. She has had to get out of the shower before because she would get so dizzy. For the past couple of days she will start to see purple or everything goes to black. I think she is probably about to black out or pass out. I have messaged our neuro-oncologist (haven't gotten an answer yet) and she has an appointment Monday with the pediatrician. Is this common with neurontin? The neurontin has helped her so much she doesn't want to quit taking it. They did just increase her dose a couple of weeks ago to 2100 mg a day.

Any information or advice is appreciated,
Machelle

[Robyn6447]

First I want to say congratulations that your daughter has been off chemo for 7yrs! That is wonderful! While I can only speak about the med side effects that I have encountered I hope it might give you a little bit of info. I was dx'd with Trigeminal Neuralgia in 2004 by trying Neurontin, it immediately offered relief. I have been on it since and other things since then. I to have had to get out of the shower numerous times because I would get out of breath all of a sudden. It would only get like that while I was showering. I have hot sweats all the time but I don't know if I can attribute the meds to that or not since I'm 46 and perimenopausel. Interestingly tho they prescribe neuronton off label to help with hot flashes...Anyways my concern for your daughter is what I experience with the drug, I have major short term memory problems and loss. It has also affected some of my long term as well. When I first went on it I lost large chunks of time. There is actually a month when I first was dx'd that I do not remember. I cried and was very depressed about this for quite awhile. At my job my coworkers used to call me the school marm because I excelled at spelling. I literally had to start over learning to spell alot of words afterwards. I kept a dictonary by my computer for a long time. Don't even get me started on names! I used to be able to recall peoples names perfectly now I'm lucky to remember my own. Yes it is alot better than it was initially but there are still gaps and alot of frustration but I manage and it is a constant training/relearning experience. I have read that patients memories improve once they go off of it but it is still new enough they don't really have any long term studies to back it up.I would be leery about giving it to a 12yr old when the brain is still developing. How long has she been on it? The effects do settle down quite a bit after awhile but as with any drug you have to weigh the side effects against the benefits received.
Warm wishes to you and especially your special daughter who has endured so much but has come out ahead and now wants to be a normal girl going to school and doing the normal activities that girls her age are doing.
Btw hang on to your seat cause your entering the dreaded "boy stage!"

[Machelle]

Originally Posted by Robyn6447

First I want to say congratulations that your daughter has been off chemo for 7yrs! That is wonderful! While I can only speak about the med side effects that I have encountered I hope it might give you a little bit of info. I was dx'd with Trigeminal Neuralgia in 2004 by trying Neurontin, it immediately offered relief. I have been on it since and other things since then. I to have had to get out of the shower numerous times because I would get out of breath all of a sudden. It would only get like that while I was showering. I have hot sweats all the time but I don't know if I can attribute the meds to that or not since I'm 46 and perimenopausel. Interestingly tho they prescribe neuronton off label to help with hot flashes...Anyways my concern for your daughter is what I experience with the drug, I have major short term memory problems and loss. It has also affected some of my long term as well. When I first went on it I lost large chunks of time. There is actually a month when I first was dx'd that I do not remember. I cried and was very depressed about this for quite awhile. At my job my coworkers used to call me the school marm because I excelled at spelling. I literally had to start over learning to spell alot of words afterwards. I kept a dictonary by my computer for a long time. Don't even get me started on names! I used to be able to recall peoples names perfectly now I'm lucky to remember my own. Yes it is alot better than it was initially but there are still gaps and alot of frustration but I manage and it is a constant training/relearning experience. I have read that patients memories improve once they go off of it but it is still new enough they don't really have any long term studies to back it up.I would be leery about giving it to a 12yr old when the brain is still developing. How long has she been on it? The effects do settle down quite a bit after awhile but as with any drug you have to weigh the side effects against the benefits received.
Warm wishes to you and especially your special daughter who has endured so much but has come out ahead and now wants to be a normal girl going to school and doing the normal activities that girls her age are doing.
Btw hang on to your seat cause your entering the dreaded "boy stage!"

Hi Robin,

Thanks for replying. I am going to call Elizabeth's neuro-oncologist tomorrow. We have went back down a dose with the neurontin. Only 300mg. Elizabeth seems to be a little better today.

Elizabeth's oncologist and neuro-oncologist said most kids who are on or have had the vincristine (the chemo drug that caused the neurophy Elizabeth has) that Elizabeth had are all on neurontin. The dose concerns me a little. Our reumatologist told me he only put kids on 100 - 300 mg of neurontin.
The neuro-oncologist has Elizabeth moved up to 2100 mg a day. She said she can go up to 3800 mg a day. What is the average dosage for adults?

Do you think her symptoms might get better? She is not having any problems thinking yet. I hope she doesn't have that problem. If she does I will probably have to take her off of it since she has to learn at school.

Do you know any other meds that might be a good substitute for the neurontin?

Thanks so much,
Machelle

[mrsD]

One thing you might try is acetyl carnitine. This supplement has shown promise in Chemo patients to improve functions of the mitochondria which may be damaged by the drugs:

CNS Drugs. 2007;21 Suppl 1:39-43; discussion 45-6.
Acetyl-L-carnitine for the treatment of chemotherapy-induced peripheral neuropathy: a short review.
De Grandis D.
Source

Divisione di Neurologia, Ospedale Civile di Rovigo, Rovigo, Italy. ddegrandis@iol.it
Abstract

Peripheral neurotoxicity is a major complication associated with the use of chemotherapeutic agents such as platinum compounds, taxanes and vinca alkaloids. The neurotoxicity of chemotherapy depends not only on the anticancer agent(s) used, the cumulative dose and the delivery method, but also on the capacity of the nerve to cope with the nerve-damaging process. The sensory and motor symptoms and signs of neurotoxicity are disabling, and have a significant impact on the quality of life of cancer patients. Moreover, the risk of cumulative toxicity may limit the use of highly effective chemotherapeutic agents. Therefore, prophylaxis and treatment of peripheral neurotoxicity secondary to chemotherapy are major clinical issues. Acetyl-L-carnitine (ALC), the acetyl ester of L-carnitine, plays an essential role in intermediary metabolism. Some of the properties exhibited by ALC include neuroprotective and neurotrophic actions, antioxidant activity, positive actions on mitochondrial metabolism, and stabilisation of intracellular membranes. ALC has demonstrated efficacy and high tolerability in the treatment of neuropathies of various aetiologies, including chemotherapy-induced peripheral neuropathy (CIPN). In several experimental settings, the prophylactic administration of ALC prevented the occurrence of peripheral neurotoxicity commonly induced by chemotherapeutic agents. In animal models of CIPN, ALC administration promoted the recovery of nerve conduction velocity, restored the mechanical nociceptive threshold, and induced analgesia by up-regulating the expression of type-2 metabotropic glutamate receptors in dorsal root ganglia. These results, plus the favourable safety profile of ALC in neuropathies of other aetiologies, have led to the effects of ALC on CIPN being investigated in cancer patients. Preliminary results have confirmed the reasonably good tolerability profile and the efficacy of ALC on CIPN. The present studies support the use of ALC in cancer patients with persisting neurotoxicity induced by paclitaxel or cisplatin treatment.

PMID:
17696592
[PubMed - indexed for MEDLINE]

I am unsure is 7 yrs later, it would have the same effect, but since it is rather benign and has few if any side effects, it may help. It has been used for years by the HIV community because the retroviral drugs also damage nerves.

I'd start with 250mg a day, and work up to a gram a day for a month and see if your daughter feels better. This supplement is over the counter. See what your doctor thinks.

[Machelle]

Thanks for this information. I will try it. I hope it works.

Machelle

[Robyn6447]

Hi Machelle, I was just passing thru and wanted to know how things are going? Have you seen the neuro-oncologist yet and discussed the medicines with him? Please keep us informed of how things are going and I hope you all have a spectacular summer