ITCHY!!!

My two year old is complaining of being itchy all the time at the site of a neurofibroma on her spine. It makes her miserable. Anyone else itchy? What helps?

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Oh yes.I itch most of the time.

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I scratch skin off some areas cause of a constant itch. Might have to learn to deal with it and build tolerance. Might try moisturizing creams. Ask the doc.

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Hi there, The itchiness probably comes from the fact that mast cells are involved in NF tumor growth. Mast cells are loaded with histamine and connected to allergy responses. They are highly inflammatory and promote blood vessels so that tumors are able to grow. One of the reasons Gleevec might work for plexiforms is because it affects a protein called c-kit that calls mast cells into action. The well known NF researcher Dr. Riccardi proposed that the drug Ketotifen which is a mast cell stabilizer could have a positive affect in reducing tumors in NFers. Unfortunately, it didn't appear to have quite the expected affect and his theory fell out of favour for a while until more was learned and mast cells were again found relevant to NF. Ketotifen was found by some to help with itching. However, there is some concern at least in theory that mast cells might offer some protection against malignancy and that until we know more, mast cell stabilizers might not be recommended. Not sure what the current thinking is on that but all of this ramble is meant to give you something to discuss with your doctor.

http://archderm.ama-assn.org/cgi/content/abstract/123/8/1011

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC297005/

http://www.jci.org/articles/view/20503/version/1
http://www.medicine.indiana.edu/news_releases/viewRelease.php4?art=272#

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I itch all the time. Especially here lately, but I find that if I take Atarax it helps some. I don't have any new tumor growths, just a lot of itching and it drives me crazy. I wake up in the middle of the night scratching sometimes.

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CindyLouWho,

The itchiness probably comes from the fact that mast cells are involved in NF tumor growth.

However, there is some concern at least in theory that mast cells might offer some protection against malignancy.

These statements seem to be contradictory.

How can something make tumors grow and protect against malignancy at the same time?
I'm confused.

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PVA, I don't think that statement is contradictory. NF tumor growth is not synonymous with malignancy. The majority of tumors in NF are benign. Mast cells are involved in the poliferation of benign tumors. There are not alot of mast cells found in MPNST, the cancerous tumors. That finding begs the question as to whether or not mast cells might actually have a protective affect. The question about the roll of mast cells in malignancy is an important one because it raises the possibility that inhibiting mast cells through the use of certain drugs could have some unforeseen but dangersous repercussions. As I said, I am not sure if there has been any updated thinking on that subject especially now that we have a better mouse model for NF. Did you see the article I posted called It Takes Two to Tango regarding the relationship between mast cells and schwann cells. This is the relevant piece.

Quote: "There is one caveat to bear in mind in regard to the role Nf1+/– mast cells may play as they nestle into their new-found microenvironment. With respect to the role of inflammation in cancer and the recognition that mast cells are one of the inflammatory cell types involved in protumor actions (26), it should be acknowledged that neurofibromas are benign tumors, especially the dermal neurofibromas, which never progress to malignancy. It is also important to recognize that the neurofibromas that develop in the mouse models are not dermal neurofibromas, but are more like human plexiform neurofibromas. These tumors often progress to malignant peripheral nerve sheath tumors (MPNSTs); however, unlike in other tumor model systems where inflammatory cells are in excess in tumor microenvironments, there are relatively few mast cells in MPNSTs (ref. 27; H. Zhou, personal communication). Is it possible that an influx of mast cells, drawn by a small cohort of malignant Nf1–/– Schwann cells, induces fibroblasts to synthesize the plethora of extracellular matrix seen in dermal neurofibromas, which could then serve as a “glue” to corral the deviant Schwann cells? By this reasoning, only when mast cells are lost, as seen in the MPNSTs, would there be diminution of the anti-cancer effects of mast cells in maintaining the benign nature of neurofibromas. Thus, until the paracrine/autocrine paradigm is deciphered in neurofibroma formation, it behooves the NF1 research community to continue working toward the identification of mast cell signals (inducers) that specify responses from the microenvironment before implementing clinical trials using agents that inhibit mast cell migration toward the tumorigenic Schwann cell. To this end, Yang and colleagues (2) will likely make more outstanding contributions both to the NF1 research field and to the work of those who are dissecting the roles of inflammation and the microenvironment in cancer."

Cindy

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Both of my girls have itchy skin too. I've used benydrill, but that makes them tired, so only use that if you can find a non drowsy type, but what helps a lot is the natural soaps I get at the whole wheatory store. And lotions. There is even a powder that stops itching and it's for the body. Medicated body powder. It cools the skin and traps in moisture. My husband complains of itchy skin too. It must be something common with NF-1 My girls are 7 and 9.

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oh hell.........i mean "heck" ya i have some very itchy areas....i even have a spot where my foot used to be (leg amputation in 92) and that spot still itches even tho the leg is gone!..pretty wild eh? lol
havent found any type of lotion or cream that works
i scratch em till the skin is ripped off sometimes

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My daughter, almost 9, is itchy. When she was a baby, before I had even heard of NF, she used to have scratches all over her torso from itching =[ . I had no idea...we are learning as we go.
I have tried 1% hydrocortizone creams that seem to help. Right now she has one that is on her upper inner thigh where we have been putting neosporin and a bandaid. Her itching has lessened through the years, but she does have more fibromas. I find it interesting that the itch is from more developing. I have a great NF doctor, but had not been told this so far!

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Thank you for all the info and for your help! I will be trying a few things:)

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Just found this forum. What I found helps is .... Bubble bath or Bathoil. When I first was told this, I thought it was an old wive's tale but I tried it for three months and it works ! My itchiness disappeared by 90%. So try it !

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on both legs from my ankle to my knee on front of legs my skin cells reproduce so rapidly that i scratch a layer of skin off every week nothing helps this it is worse in winter the itching drives me crazy the skin looks dried out and dead the skin underneath looks normal but starts over again it drives me crazy

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