Vincristine for ITP treatment

Just a quick update on Emmy's treatment with Vincristine. She had her third and final infusion yesterday. It took only about 15 minutes after we got all of the other stuff out of the way. Right now she is holding at 130k we will check her platelets next week and see how this last dose effects her. We are hoping for a few months remission or possibly, dare I say it, a complete remission
She has had basically no side effects. I will keep you updated on if it works long term or not. Vincristine has been the best treatment thus far for Emmy, much better than steroids or IVIG. I would highly recommend giving it a try.
Shauna

Shauna how wonderful for you and Emmy She is probably thrilled to keep up with her active sports and get on with life! I look forward to hearing her future counts
LaMonica
mom to Camden (9yrs) dx 6/09

thats a new treatment that ive never heard of, hope for the best!

Actually it is and older drug and something that they used to use. They often use it on children because they say it is less toxic than other drugs. 4 weeks after her first infusion she is at 161k. We are keeping our fingers crossed that is lasts awhile. Still no side affects just mild hair thinning.
Shauna

Shauna:

I'm impressed with this news! Can't say I've ever heard of Vincristine being so successful and having no side effects. I'll file this one away in my memory for the next time it comes up!

Good for Emmy!

We had the opposite side to this treatment. If anyone is considering vincristine and wants to know about our experience just let me know!

After ten treatments of nplate with no success, Doc wants to try vincristine next. My wife and I are more than a little scared using chemotherapy on our four year old. No bleeding just lots of bruises from playing with older sisters.

When Julianne was 13, and was four months into her diagnosis, she was running counts in the low teens and not enjoying life much due to all the restrictions and fatigue. We had a long talk with her hema about options, which he explained would increase once she was deemed "chronic" (which was then at the six months mark). Vincristine was an option which he explained, but didn't go so far as to recommend at that time. We had the full discussion about hair loss, neuropathy, etc. He urged me to read about it before considering it, and to keep up hope that things may improve and it may never be needed. We both left the office crying. When our doctor friend asked me at a school function about what was going on with her ITP, and I mentioned this to him, he looked horror-stricken and urged me to read up on it and to avoid it unless it was the last resort. When I read up on it, and when I learned about Mollie's experience (see molliesmom's post), I knew we'd never go for vincristine. That's not to say no one should, but please be fully informed before you choose it.
Norma

Well it was nice while it lasted!
Its been about 6 weeks since Emmy got her Vincristine treatment and she is back down to 27k She was at 161k just 3 weeks ago then to 94k now to 27k. Very disappointing. We are not going to treat for awhile (unless needed), she will just have to be safe and sit on the bench during soccer games. Her hair has really thinned but only our family can tell (she had a lot to start with). We may try Rituxan in a few months, but for now no more meds.

Sorry to hear that. I'll put Vincristine back where it was on my treatment list - near the trash pile.

My daughter is 16mos old and she has had 3 treatments of the Vincristine and the last was on 8/30/10 and numbers were going up and this past Mon they were back down and now her walking has gone downhill. She has been walking for 4 mos. and all of a sudden she is down to crawling and walking some but has to hold on to something, has no balance and seems week. Chemo Dr. says not the chemo but a neuro Dr. says it is so now we are going to go to another hospital to get another opinion. Did your child have any problems with the walking?

Yes, I would like to know about your experience with the Vincristine. My child is 16mos old and has had 3 treatments of it and counts were going up but now going down and she has been walking for 4 mos. and now she can hardly walk, back to crawling and has to hold on to something to walk or needs help to keep from falling. We are trying to get into Duke Hospital next week to see if this is the chemo side affect or something else going on.

Dear hbangel,

I'm sorry to hear about your little girl. It sounds like something is not right, and I'd encourage you to really listen to your motherly instincts. I was wondering if she had also received her vaccinations in the last few months, as well? I often do work with autistic kids, ones with seizure disorders, learning disorders and behavioral problems. This regression in walking or talking or social interaction is very common, and most of the time it does seem to happen within a month or two of the vaccines.

I've also seen this regression in walking happen in dogs, who are even more heavily vaccinated than humans. In fact, this was the case with a puppy that was given to my daughter recently. He seemed to have multiple other issues, besides the dragging of his legs and excessive sleep and tiredness (not normal for a puppy). I ended up giving him a homeopathic remedy that is often useful for counteracting vaccines, and fit the rest of his symptoms, and even the next day, we could see a big difference. Within a couple of weeks, he was like a completely different puppy. His walking became normal, seizure activity had stopped, and his autistic-seeming behaviors had totally disappeared.

Homeopathy can help to undo some of the damage of vaccines, whether in animals or humans. Homeopaths have recognized this damage and been able to help reverse it for two centuries, now.

If your daughter is like this from the Vincristine itself, that can also be helped with a homeopathic remedy. In my Materia medica, Vincristine sulfate is listed as causing these symptoms for the Central Nervous System, so it does look like that might very well be the case for her:
CNS
Neuritic pain; sensory loss; paraesthesia; difficulty in walking; slapping gait; loss of deep tendon reflexes; muscle wasting; ataxia; paresis; foot drop; cranial nerve palsies; convulsions; vertigo; dizziness; motor difficulties; sensory impairment; paraesthesia.

From what others have posted, this does not seem like a very good option for your little girl.

I wish you the best,
April

Dear hbangel,
I'm sorry to hear of your daughters difficulties. Emmy did not have any issues with walking or any of the other side effects listed above from Vincristine. She had some tingly feeling in her extremities, hair thinning and constipation. She's 13, so she's been walking for a while the vincristine didn't last very long for Emmy, I think total it was about 6 weeks.
wishing you the best,
Shauna

April,

Thank you so much for the information, it has been very useful. She had her last set of shots 2 weeks before she got ITP which was the mumps, measeals and rubella shot. Since my last post her walking has improved but still not where she was at and hope just the chemo side affect. So far everything else such has her eating and speech are the same. We go to the neuro dr. next Tuesday and we are also going to start physical therapy. We get another count next week and if they have dropped low enough to treat I am not ready for another chemo until we found out more unless they are so low and that is what we need to do. She has been fine though all of this b/c until now she had no idea that anything was wrong with her. As soon as her walking changed, she changed. We clap and give praise when she walks on her own. As I am sure all parents wish, I wish I could read her mind b/c being 16months she can't tell you what is wrong. You are so right about mother instent, so far each time her counts had dropped, I was calling it 2 days before that numbers were down. Thank you again for your help and take care.

Dear hbangel,

There have been quite a few parents that have posted here, who have noted a similar appearance of ITP, shortly after a vaccine. The most frequently sited is the MMR, though because multiple vaccines are so often given at one time, it makes it really difficult to know which one specifically they're having a problem with As I said, I have had a number of children on the autism spectrum as well, and the MMR and the DTP shots seem to be the ones giving the most trouble.

These kids can have tremendous amount of improvement from simply antidoting the particular vaccines or drugs they were given. Usually after that, a constitutional remedy can be chosen to strengthen the vital force. But these simple methods can make a huge difference, and some you can do yourself. The same principle can be applied to the Vincristine.

Remember--all the vaccines contain much more than just the particular viruses. These adjuvants are harmful in their own right:

A vaccination adjuvant is an ingredient , such as aluminum, that the pharmceutical company puts in its vaccination to boost its efficiency in your immune system so that the vaccination can be "diluted" and served up to more people. That sounds like a fairly smart things to do--sort of like adding more water to the soup to feed more hungry people. Only it's a little more dangerous than adding water to soup. The danger lies in the fact that it super-charges your immune system. Any immune system in high gear is a dangerous thing--and an immune system in high gear in response to a foreign agent such as aluminum or any of the other enhancers, is even more dangerous. Auto-immune diseases are formed this way; from super-charged immune systems out of control, destroying themselves.

April