Join now

Already a member? Sign in

Welcome to Inspire!

What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.

Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.

How - Joining Inspire is completely free and usually takes less than a minute. Join now!

corner corner corner

Webinars info has me even more confused and frustrated.

minimammax4
0 Recommendations

I'm not sure I'm posting this in the right spot, but I'm here basically to vent tonight anyway. So anyone that reads this, is one person that I hope can understand.
I have been dealing with vhl for the last 6 years now when my daughter first developed signs of it. She was diagnosed 4 years ago. I have studied and studied, and read and read, and listened until I'm blue in the face. I thought I had a pretty good understanding of it till recently. Now, everything I thought I had learned of it, or everything I thought I knew, seems to be going down the tubes. So when the webinars came out, I thought, "this is perfect!" This will give me what I need! However! The more of them I participate in, and the more of them I listen to, I get more and more confused. I guess I just realized tonight, after listening to two of them, that I really have no concept of this vhl thing at all. I'm so lost when it comes to all this. The vegf thing, the protien thing, omg, i could go on and on. Then, not to mention how discouraged I am, and how frustrated, by listening to the sutent trials info, and how nothing I have ever reported as far as side effects my daughter had while on it, were never mentioned. She for some reason, has never been allowed into any trials. Every med she has been on, Avastin, Sutent, etc, has been at my insurance carriers expense. I've been in touch with the NIH, I've talked to all these people and spent hours upon hours on the phone these past few years. Sent scans to NIH, talked to everyone that anyone has ever referred me to, Nothing we have ever experienced, has even been mentioned. Her experiences, with Avastin, Sutent, or the side effects. We've asked questions that can't be answered. Our fate at this point, is undetermined. As with all with VHL I guess. At this point she is stable, and I thank God for that. Lord knows I have said my share of prayers. Not just for her, but for all of you. I'm so lost now in this whole vhl thing. I realized tonight, that my daughter suffers from a deadly disease, that I have no clue about. For as much as I have read, talked about, and tried to learn about, I realize tonight, that I have no concept in understanding it. It's way over my head.
I think there needs to be a more basic vhl101. Something to start us off from the beginning, as far as info on it, and somehow make it more easy to comprehend. Especially when you are dealing with new mutations, the first in the family to have it. Or...maybe I just need my own personal counselor to help me get a grasp on this? HAHA, find one that knows about it! Let alone one that can explain this thing to me! What causes it, what helps it, what hurts it, what this whole vgef thing is, vhl protein, and all this other info in the webinars we listen to. I'm not sure why, but I will still listen to the play backs, and take part when I can. Just in hopes that maybe someday, I can get a grasp on this. And.....then I have to try and explain it to my daughter???

Explore topics in this discussion:

Cancer Avastin Depression Stroke Stress Sutent

12 replies

gale

There is a VHL101 webinar. There is a handout as well. http://www.vhl.org/support/webinar.php

The VEGF and protein info is more technical and can be bypassed esp till the basic informatin is understood.

One thing to keep in mind is to be sure your daughter's immune system is healthy and it will be nice to her. To help keep her immune system healthy is by the food she eats and verifying anything that touches her senses should be as healthy as possible.

Gale

TinaDiane

Sorry you are so frustrated! Have you downloaded the VHL Handbook from the VHL Alliance web site?
It has alot of great info in it. It helped me when I first found out I had VHL.
Good Luck, We have all been there and have been unhappy, confused, scared, anxious, fearful and upset.
Tina

marie3

Minnimammax,

I hear you! This whole VHL thing WILL make you pull your hair out. The medical industry alone is quite scarey. How their minor mistakes can turn your whole life upsidedown. VHL came into my life approximately 6-7 years ago with an eye tumor. Soon to follow with some very minor spinal lesions. My 7 year old son has VHL, and is asymptomatic.

I won't go on and on...........but know that we share your frustration. Keep searching and you will find
doctors who are knowledgeable about VHL ,and who actually do care. Though they don't come easy. Keep asking questions.

Take care,
Marie

joyceg98

I'm very much open to hearing what you would like to see in a more basic webinar. Please watch VHL 101 and then let me know how it does or does not meet your needs.

And no "canned" program can answer all of anyone's questions. You may simply need a phone call with me or Gale or one of the hotline volunteers who can help you with the particulars of your situation.

There are no magic bullets for VHL at this time. Period. While there are some new drugs, they are not effective for everyone, and they do have side effects. They are FDA approved for "advanced cancer" (meaning metastatic cancer) which most people with VHL are able to avoid. None of them is yet approved for use with VHL per se.

We are still working toward having some help from a drug. The drug we need has probably not yet come to trials, but the drug companies are learning through these early generations of the drugs what needs to be modified to make them acceptable for our population. They need to be gentler (fewer side effects) and their therapeutic effects need to be better targeted and longer lasting. They are working on it.

Meanwhile the most helpful advice we have is the old-fashioned stuff -- eat your veggies, don't smoke, manage your stress, get plenty of sleep, keep up with your scans.

To many people that sounds like no advice at all -- what they want is a pill! But having dealt with VHL now for 46 years, and having listened to thousands of VHL stories since 1993, I can tell you with all sincerity that that is the BEST advice we have so far, and it has made an enormous impact on people's quality of life with VHL in the past 15 years.

Too much treatment can be as serious a problem as too little treatment. Each person has to work out the right balance for their particular situation. We are here to help you and your doctor find the right balance.

Best wishes,
Joyce

joyceg98

It occurs to me to say too that it is not necessary for everyone to understand how things tick inside the cell. The researchers have to comprehend that in order to develop the drugs, and it can be interesting if you are so inclined.

But don't feel that you HAVE TO understand it at that level -- most doctors don't understand at that level either, and they are still quite competent doctors.

Different strokes for different folks.

The high-level summary about clinical trials would be: "We're working on it, but so far no silver bullet. We do need volunteers willing to help test the drugs so we can learn more. Please consider it, but it's up to you whether this fits into your life or not."

Best wishes,
Joyce

Beverly2

Minnimamma,
I totally understand how you feel. Our son is also a new mutation...never before in the family. Our level of frustration is very, very high at times.

Our initial visits with doctors were frustrating because they didn't know what to say about this disease. I agree with educating doctors, but it's extremely stressful to know more than the doctors. We, as caregivers or patients, need a break from that level of stress. It's comforting to know that a doctor knows how to "fix" you.

We've also been frustrated with the lack of public interest in the disease. It think VHL is horrible. Absolutely horrible. (And I tend to think I have a positive attitude about most things.) Yet it's difficult to get the local businesses to supply backing or goods for a fundraiser, while these same local businesses are giving big bucks to fundraising for more common diseases. It's very frustrating!

And I too get frustrated about not understanding everything that happens in the cells of my son. I guess in a situation where we have no control (VHL), it's helps to feel that we are gaining some control by gaining information. I'm totally wondering why Steven's had two brain surgeries and multiple CNS tumors by age 18...and yet he's always lived that healthy lifestyle...always fresh foods, no second hand smoke, lots of water, regular exercise...I know it has to have something to do with his specific deletion, yet I don't understand it. That frustrates me.

The lack of face to face meetings with other VHL families is something that has always bothered me. Support groups are so important for something like this, and while this site is amazing...it's so much better in person. (I think us parents of VHL teens/young adults-Steven's since graduated as is in college now- need our own little group...especially those with a new mutation! It's nice to know we're not alone.)

I'm sorry for sounding so negative, I'm usually not. But I think your post hit a tender nerve in me. Let me add that we try to be positive about this disease on a daily basis and be proactive not only with Steven but also with the factors that frustrate us. That said, I understand your frustrations.

gale

Hi Beverly,

You bring up some very valid points, as always. Unfortunately, support meetings are done on an as needed or wanted basis. Some people just don't want to attend meetings and a lot of time and money goes into preparing one.

Right before you came on board, we held a regional VHL meeting in downtown Tampa.

As you know, when you go outside the box of communicating with people that know and want to help where VHL is concerned, it is very difficult.

Let's get together via conference call with a few key people to brainstorm on raising VHL awareness. If anyone has some thoughts they would like to share, but not want to be on the call, send me an email and I will share all ideas. No thoughts are too small.

I'll set up the call. If anyone would like to participate in the call and contribute, include a couple of dates and times that might be good for you. We would definitely like to accommodate as many people as possible.

Beverly, also ask Steven. Maybe we can get the students involved. They can be very creative.

Gale
us-fl@vhl.org

minimammax4

I appreciate all of you that responded to my frustration. I have listened to all the webinars, even participated in a couple of them. I have read the vhl handbook at least 30 times in the past 6 years when this all came up. But it all ends up going way over our heads. And I have spent many a emails and phone calls with Joyce and Fran.
It's just that when you get into all the information about vhl, and the vhl protein, and many other terms, and important factors, I get lost. When I'm lost, I can't explain it to dr's, my daughter who is actaully the one who has vhl, or anyone else!
I thought I had a pretty good understanding of it, till I listened to the most recent webinars. I agree that there should be a time when parents like me, Beverly, and others who are so frustrated can get together and just try and understand the basics of this.
I would like to compile a list of questions for myself to ask. Things about it that I don't understand, or things that have me so confused. Even some questions that my daughter might have.
Maybe after the Holidays are over, something can be set up either by conference call, or another webinar for us slow learners? ;-)
Thank you all again. I'm not giving up on trying to understand vhl, just now and again I get frustrated with all the information I have yet to comprehend.
Have a great day.

joyceg98

I would love to see your list of questions, and will be happy to work with you to put together something that meets the very basic need you are expressing.

A conference call would be great. Let's schedule it for early January -- how about Wednesday, January 7, at 8 pm Eastern time (7 Central, 5 Pacific). I think this also work for Australia.

I am happy to have a session also at a time that works for Europe -- how about Wednesday, January 7, at 2 PM Eastern US time (7 pm in the UK, 8 pm in Europe)

I will make the domestic and international free-phone numbers available so that you can dial in for free.

A few ground rules:

1. There is no such thing as a stupid question. Please ask whatever you need to ask. Or as one of my old teachers used to say, "The only stupid question is the one you didn't ask."

2. If the answer is still unclear or confusing, PLEASE ask for clarification. I will readily admit that since I've been doing this for a long time, it is sometimes hard for me to remember what a newbie doesn't know. So you will be DOING ME A FAVOR by asking me to clarify.

Let's work together and make this better!

Joyce

minimammax4

I want to Thank you Joyce for making this effort to accomodate us! I have been listening to the webinar replays again tonight, and getting my list of questions in order. But....as always, I got lost after the second one. Once it gets into, the vhl protien, elongins, exons, entrons, vegf, hif, oxygen, hproxic state, phenotype, genotype, metastastic, and the list goes on, I get totally lost. Way out there! Then there are the types of vhl. type 1, 2, a b, whatever! None of them however fit Kortney's so far!
Then I realized once again, there is no way enough information, or talk of those of them who are the new mutations! Like she is. In fact, in one part of the basic vhl101 webinar, it was stated that if you are not a carrier, it will not be handed down! Well, i am not and neither is her dad, however, she is the new mutation! There is not enough info out there on this. It mostly deals with inherited vhl.
So....With all this I have mentioned, I'm still frustrated, and have lots of questions.Maybe all this that I question isn't important to know. I find it hard to except that when it comes time to explain to Kortney about her vhl, and when I'm dead and gone, and she is just as confused as I am, and has to explain it to her kids, or her future family.
I would like to leave her someday, with a good understanding of just what she has. At her age, I dont expect her to take it on herself, but hoping she will soon. In the mean time, I would like to understand it myself, and figure out just how this happened.
I realize that until they find a cure, a drug, or whatever, we are stuck with it. And I'll probably never totally understand all this. But how do I tell doctors about this, when they take no interest to learn it on their own? Especially if I can't explain the process to them.
I'm looking forward to the conference call, and plan on attending both of them. Thank you once again for your efforts in helping out those of us who can't get a grip on this like we thought we might have had.

gale

Hi Joyce,

I'm glad to see a webinar is scheduled to help explain the many aspects of VHL, but everyone please keep in mind if everything was understood, VHL would no longer be a problem.

I would still like to hold a conference call separate from the webinar to help raise VHL awareness, if anyone is interested. Wouldn't it be nice to go to a doctors office, explain the symptoms and the doctor thinks of VHL?

Just a side note, my gp said when a patient comes in with VHL or pheo type symptoms, he has them checked for VHL. He is surprised he hasn't found one VHL patient yet. There's hope. :)

Gale

joyceg98

Sounds great, Gale. Can you and others please help to shape it? What should be included in such a call? Who should be invited?

A friend of mine (not VHL) has had an undiagnosed ailment for at least a year. She has been complaining primarily of depression, and occasional headaches and general malaise. Could be lots of things, but the depression has gotten the most attention -- prescription from an MD psychiatrist. She has seen a lot of doctors.

Last weekend she was in the car with her husband (he was driving) when her left arm went numb and she began having symptoms they thought were a stroke. They drove to ER at the nearest hospital for help. Long story short, she has a brain tumor.

So people with VHL are not the only ones who have trouble getting a diagnosis. We have all these wonderful scanning tools these days, but constraints on the use of them (they're expensive) -- think how much time and money has been spent in the last year seeing a multitude of doctors, taking unnecessary medications, and losing valuable time while her brain tumor continued to grow!

Much is wrong with the US Health Care system, and hopefully we are beginning to address them.

Thank you!
Joyce

Add to the discussion

Don't have an Inspire account? Join now!

Forgot password?

Group leaders

You