Shingrix and peripheral neuropathy

@rwinney It seems like many people go into various treatments with the idea that it might help or possibly not. They of course hope so. But it seems like not many understand the risks involved in the treatment itself. This was definitely the case with chemotherapy in regards with the risk for the development of neuropathy as a result. Linda and I attended a class prior to chemo that gave us (supposedly) the risks involved. I believe that class either did not mention neuropathy as a possible side effect of chemo, or if they did mention it, it was seriously downplayed. When Linda did develop neuropathy symptoms after the 2nd infusion, she met with her PCP there in San Diego and she said to Linda "Oh, that will go away as soon as you stop the chemo". Her quick dismissal was a red flag for Linda, and it resulted in her questioning the whole chemotherapy regime, as I at the same time was feeding her a lot of "devil's advocate" info about chemo from the internet, and she ultimately quit chemo at that point, to the extreme consternation of many of her medical advisors at that time.

So I think everyone needs to be very careful about going forward with a treatment, given that downsides might exist that the medical profession will either not tell you about or will downplay in an inappropriate and dishonest manner in my opinion. You really have to be careful about the advice you get and who is giving it.

Rachel, it sounds like you are coming to the opinion that it may have been those treatments (needles, etc.) which you have received which may have contributed to the serious chronic disability you find yourself with now. I agree with your reticence or dubiousness about going forward with more treatments. It's a very sad statement about how little the professionals really know about what they are recommending to people, regardless of their good intentions or not.

Hank

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@jesfactsmon Hank, sorry to hear about your wife’s cancer. Is it ok if I ask what type of cancer? I understand it’s none of my business if you choose not to share. Just concerned for Linda which then means concern about you. Jen

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Rachel, 😲 and @jesfactsmon, @hazlenut, @hellenicola @avmcbellar, @johnbishop .

😥!! Oh my GRACIOUS what you've been through!! I am so sorry you've suffered so!

I like the way you approach it. Really no other choice. Water under the bridge. You don't complain, only deliver the info. Bless your heart ♥️

You're correct when you say these injections work for some and not for others (not your words verbatim).

I 've never heard of frying the nerves but it makes sense. I can't believe you weren't sedated! The only side effects of sedation I' ve ever had are the munchies! 🤣 Man do I ever blow my diet something awful on those days!

I worked in Healthcare 20 years and believe in specialty. I believe a well trained anesthesiologist of well repute is the best doctor to do these procedures.

I 'm dealing with almost identical cervical pathology and head Sxs as you described. My spine doc wants me to have steroid injection /s there too; occipital and /or C-spine. Oy vei.

Good talk. I will send up a few on you behalf. Deeply caring, your friend Sunnyflower 🤗💗

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@busterbrwn22
Sure, she had breast cancer. I love to tell people because of the great product called Haelan through which she has managed to remain cancer free for 5 years now after quitting chemo in mid course in 2014. If you want to know what that is, do an online search for Haelan951. I also have access to a lot of technical info I can send anyone interested.

I found out about it only because in August 2015 someone on the breastcancer.org forum mentioned it in passing. Linda now takes 2 ounces every single day. Best, Hank

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@busterbrwn22
Sure, she had breast cancer. I love to tell people because of the great product called Haelan through which she has managed to remain cancer free for 5 years now after quitting chemo in mid course in 2014. If you want to know what that is, do an online search for Haelan951. I also have access to a lot of technical info I can send anyone interested.

I found out about it only because in August 2015 someone on the breastcancer.org forum mentioned it in passing. Linda now takes 2 ounces every single day. Best, Hank

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@rwinney @jesfactsmon @sunnyflower @bustrbrwn22 and to all my Neuropathy Warriors, First, Rachel, you have gone through just so much. It is indescribable. My heart goes out. I do think that doctors have a way of not telling us all of the facts that we need to make informed decisions. As a patient, we often even don't know what we don't know, so we don't know what to ask. So much is at stake. Doctors are so busy, that they don't tell us essentials. Big Pharma dictates a huge amount of their choices. It is so sad that after the fact, we realize what we should have done, could have done, etc. My breast surgeon and oncologist look at me blankly when I talk about my foot neuropathy, as though my radiation or perhaps an autoimmune response to my breast tumor created my neuropathy. They don't want to acknowledge this. How bout the fact that studies show that yearly mammograms can create too much radiation in breast tissue, and can cause breast cancer. How much does the mammogram industry make every year? Money, greed, politics, doctor overwork and exhaustion......on and on in not letting patients know all that they should know. Sad. Just sad. Lori Renee

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Hi Hank, that is great that Linda has been cancer free, just wish she’d get more relief from her neuropathy. I had read your previous post about Haelan; that looks to be a fermented soy beveridge and is quite expensive. Have you considered buying miso paste and making your own broth for a fraction of the cost? I know that all fermented foods are very beneficial for your health (sauerkraut, kimchi, etc) Just a thought. Helen

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Thanks for sharing that Hank. Does Linda have any periodic diagnostics to ensure she is still cancer free? I know the 5 year mark is when they say you're out of the woods. I pray she remain so for the rest of her life!!!!!!! Sunnyflower @bustrbrwn22

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@helennicola
Linda had 5 outbreaks in a row from 2011 to 2015. When she told the oncologist she was refusing any further treatment, she was told to expect to continue having new cancers break out regularly. She started Haelan in Sept. 2015, right after the last lump appeared. Since then there have been no new cancers. She last saw her oncologist about 2 years ago. She does regular self searches for lumps, but to be honest, she's not really too worried about finding anything at this point.

Helen, I hear you about fermented soy. Yup, it's very good for you. Haelan however is something different in some significant ways, based on how it is made. It has been developed to have a number of properties that ordinary fermented soy foods do not have.

It effectively fights all cancer everywhere in the body. I have access to a zillion scientific articles about it which I am glad to share. If anyone is interested in further info about it, they can contact me.

Best, Hank

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@sunnyflower
She and I have gone past the point of worry at this point which is due to our confidence in Haelan, built from both experience and extensive reading about it. However, were she to be in a situation where she had to fight another outbreak, she has already decided never to undergo chemo again, ever. That includes radiation as well. So with that sort of mindset, having ongoing cancer testing (beyond self exams) seems moot. She is moving forward with life and we consider cancer to be in the past for her.

But we'll always accept your prayers, gladly. Thanks Sunny! Hank

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