We're here for suggestions, support ONLY

Friends,

I feel like I have to comment on the content of some of our members' messages. Please remember, that as far as I know, we have no oncologists/radiation oncologists as members. We DO have a few welcome nurses. Therefore, any "advice" given by our members is strictly their opinions, albeit some after much research and experience. I do not believe that anyone here should "tell" other members to take or not take any chemo/supplements/OTC drugs. Of course, that's only my opinion. I'm just concerned that specific members are being asked for medical advice.

If you have medical questions and need specific answers, I would hope you would ask your medical provider. And we're all here to cry with you, smile with you and share our own experiences, experiences which are different with each person.

Love and light,

Lisa

[Esther]

Absolutely, any advice you hear anywhere should be used as a starting point for your own research, and in all cases, reviewed by your oncologist as well.

That being said, I don't see any harm in board members sharing what they have found helpful for them, or information they've come across.

I appreciate all these opinions and take them as such. I like to hear from people who have managed to survive long term against all odds. They must have valuable stuff to tell us.

[Joe]

From the Block Cancer Foundation Website:

“DO IT RIGHT THE FIRST TIME” DAY

Richard & Annette Bloch

Sunday, June 3, 2001, which is National Cancer Survivors Day, is being designated as “DO IT RIGHT THE FIRST TIME” day! The significance is to try to get all Americans to promptly get a qualified independent second opinion upon the diagnosis of cancer before any treatment.

It has been estimated that in excess of 1,000 Americans die each week needlessly because they were improperly treated for cancer! This is not because the life-saving treatments are not available, but because the physician diagnosing the cancer is unaware of the latest and best treatment for that particular type of cancer. If we can make it a standard practice for every newly diagnosed cancer patient to have a second opinion, many of these lives and the suffering and anguish will be saved!

If a physician were diagnosed with cancer and knew he had gone to the best doctor already, do you think he would be treated without a second opinion? As Dr. Vincent T. DeVita, Jr., former director of the National Cancer Institute said, he had never met a doctor diagnosed with cancer who did not insist on a second opinion on the pathology, let alone the treatments! This is the patient’s life and they must be selfish.

The goal of “DO IT RIGHT THE FIRST TIME” day is to see that it becomes standard practice for every cancer patient to get a second opinion. Many top physicians automatically refer their patients for a second opinion prior to treatment. It is the patient of the physician who says, “You don’t need it” who needs it the most. The doctor who is afraid to admit that someone else might know something he doesn’t know, someone else might see something that he doesn’t see, or that he is human and might make a mistake is the serious threat! That is why the second opinion must become a practice in every case,
not just certain isolated cases.

Right now some people are worried about hurting their doctor’s feelings. “Do it right the first time” day must do away with that obsolete sentiment. Any physician who does not have enough self confidence to want their patient to have a second opinion is placing their feelings above the patient’s life and should not be practicing medicine. The oath of Hypocrites, which commands a doctor to do no harm, mandates a second opinion in every case of cancer.

[StephN]

Speaking of second opinions, most insurance providers will PAY for a second opinion from a qualified professional. I have had more than one second opinion, even a THIRD opinion before starting my adjuvent treatment for breast cancer.
If your doc does not understand your need for a second opinion, then he /she may not be worth the powder to blow them up (so to speak).

As Esther says, what experience/advice/opinion/research spoken of on this board is a starting point and it is for each of us to take what interests us and go from there to see what may apply to our own case/life.

There is an ADVISORY BOARD of medical professional attached to HER2 support.org. These are the people we should be going to for questions of a medical nature.

[al from Canada]

Steph,

To my knowledge members of the advisory board are consulted from time to time.
Al

[StephN]

AL,
It seems that mainly Christine and Joe get in touch with the advisory board members for specific questions. There does not seem to be an easy way for the board members to "ask the doctor."
Also Christine and Joe most likely are not able to read each and every one of the posts here to intervene with a query to the board if necessary.
We shall see how certain advice here gets handled.

[mamacze]

Lisa, Al, Steph,

It may be that the advice we give is "just" advice; but I am so grateful for the words of wisdom that I read; especially from others who have already walked in my moccasins and have experience to share, or sound data from folks like dear Al, Eric or Joe who are right on top of the latest research and news releases; often when I share a print out of their advice to share with my onc; he is happy to read it and comments on the quality of this web site. So I say, keep the advice coming!
Love Kim from CT

HI all, for those who know me, my Onc didn't even consider Herceptin before I got this site, and that was over 3 years ago now, and because I am still alive after the year 2000, which was my use by date, he considers me his consulting onc, you see, since this board with all of the ladies sharing what works and does not work for us HER ladies, we are an unknown quantity, and very unpredictable. We have tried the quote "Usual" protocol, and lets face it there is nothing usual or normal about us. If I had not come across Carboplatin being used with Her/Taxol it was out of the window tooooo toxic is what his nurse said, then armed with the info I faxed it to him and guess what, not only did I get Carbo, but everyone else he had on Taxol, and now I am combining Xeloda with Cytoxen (cyclophospamide) oral, what a brilliant combination he thought, he is considered one of the best in Australia, problem that he doesn't only specialise in BC, and for him to know everything that is happening for us in the way of treatment, he would never sleep, let alone absorb all of that valuable info, so with the likes of me and the other ladies on this forum, we have to educate our oncs, and along the way help all of the other patients they treat. So you see, an onc is as only as good as the info we give them, the other thing, it is so nice to see his nursing staff jump through hoops when they see me coming now, after they gave me a rough time there for a while, even the Director of Nursing apologised for their behaviour and pleaded with me to keep on coming, like I am going to say, no I don't want to any more, like where else am I going to go and have an Onc take any notice of me.

Love & Hugs Lyn

[Sandy H]

Lynn you are so right. I do the same thing with my oncologist and he says I am his easy patient. I come in armed with questions, information and suggestions on my care. This last time on chemo I asked if we could use only Taxol with the Herceptin and no carbo. He told me he would have to think about it then replied, "I have no reason to think about this with you yes, we can and if it doesn't work we can throw in the carbo later". The very first week following my first treatment he said, "it appears to be working and so that was a great idea, one less toxicity to your body" He said if all his patient were like me, so very pro active, his job would be so easy!! He says its us that live in our body and we should know it. Lets keep it the same we are all intelligent group of surviviors or we would not be on this board!! We may not agree with every thing here and that should be o.k. we are here to help and support. I would be so lost without this board and all you great people. Wish I could meet you all. Wouldn't it wonderful if we could have a big symposium some day and meet everyone on this board. I would love it and make every effort to be there. Good night its midnight here. Hugs, Sandy

Thanks Sandy, we must be doing something right, I think we are just about the old timers on this board and hopefully the ones that dropped off did so because they have finished treatments that have been tried and true and are all well, it would be so nice to be able to find out the tally on those success stories. We don't mind if they drop off and get on with their lives, Geee, it would be nice to be in that category, but I think this is our vocation in life, to lead by example and spare our sisters from unnecessary toxins and side effects if we can. I heard my onc tell an associate, definately new to his clinic, Oh Lyn, she is too hard, that was while she was walking him back to see me, I chuckled when she called my name, I said I think you will need to get Boris, she said of course she was the go between, when I sat down she said "so where is you pain" where that came from I have no idea, I streatched back in the chair grinned at her and said "well where do you want me to start" she had no idea of why I was there or even what was wrong with me, of course she could be forgiven for that, I just rattled it off, she was shuffling paper, scribbling notes, she said you have a connective tissue disorder, I said that's right, she was stumped as to what she was doing with me and through in the CTD as if she knew something about it, nup, she went and got Boris, so when he got in the room, she was witnessing a different language, she was chineses/english, Australians speak very very fast, Boris is Burmease but been he has been here since he was 7, one of the countries top oncs, so he is Aussie as far as I am concerned, bottom line was I couldn't have Abraxane, you can in America, we have to wait another 5 years to see if we get the same result, stupid government, any country that has a prime minister that looks like "Mr Sheen" should know he is only selling his own product, self preservation, interestingly engough his wife has Breast Cancer, I have offered to trial the new drugs for her in case she needs them in the future (Mr Sheen is a furniture polish with a little man with big eyebrows and glasses on the can, could easily have been charactured from him) Boris loved the combo of Xeloda and Cyclophospamide, I had faxed him those details as back up, he had all and I mean all of my paper work faxes in his bag, so no doubt his other patients will be getting it. In my complaint to local memember, I had my gripes about everything, there is a point to this story at the end, my now 22 year old son to this day cannot read or write, he graduated his senior year with a pass in English higher than his brother who is very intelligent, that was a joke, he had to keep bringing his assignments home with the corrections made and he had to re do it, or should I say I had to, anyway the then deputy principal, a lovely lady did not give up on him, she schedules a course with all hands on, seamanship, agriculture, manual arts and a bit of English and Maths thrown in for life skills, as soon as he left school he got a traineeship appointed by the local council in Civil construction, he did that for 12 months and during the break from that about 2 weeks, he got a job with a large road maintenance and he has been there ever since, still can't read and write but he gets Aus $53 a year equiv to you $28, anyway turns out that the lady that made the difference to his life, and maybe a few more, died of Breast Cancer last month, what a difference a survivor makes, obviously didn't get the treatment here in Australia that would have kept this great lady alive, not a mention in the local paper about her passing, my daughter who attends a different school found out from a friend well after she had succomb. The teachers told me when he was growing up not to expect much from him, because of his disability in literacy and numeracy the government put him on a pension as soon as he left school, thankfully he refused to fit that category and because of her and his determination he will make something of himself, one of the reasons I can't give him, he still lives at home, works dark to dark, no girlfriend so between me and his sister, 15 we have to look after his interests, so I told the politician he was just one of the reasons I had to continue to fight, he got 10 pages from me, I told him to get a copy before he read further, he has received it, his secretary said he will reply, where he will start is going to be interesting, I will keep you all posted. Keep on keeping on, you also are a true Energiser Bunny, (that is the battery icon, for those that don't know, a pink bunny, good choice of colour)

Love & Hugs Lyn

$53 is $53K, I couldn't give him, should have been, give in, and I had told the politicion to get a coffeee not a copy.

Ooops.

[Val Pfeiffer]

Lyn--
I would guess that you can buy marijuana and cocaine in Australia, right? It's too bad you don't have a black market for Abraxane. It doesn't seem right that you can't get your hands on what you need, but other street drugs are probably readily available.

You are doing the right thing by continuing to fight. You are helping so many people other than yourself.

When my story comes out, they also will be publishing it online. When they do (around the first week in October), I will post the link. Since your quotes are in it regarding the drug situation in Australia, maybe you can send the link to everyone you know, then they can send it to everyone they know, and if enough people read it, maybe someone high up will decide something has to change.

Val

Hi Val, I can't wait to get the reply back from my politician. You are right about the street drugs, and Cheech and Chong make their fortune turning it into a comedy, maybe they should put a royalty on their movies to go into drug research. I had a wicked idea for a fund raiser but no one ever takes me seriously, Wet T-Shirt competitions, lets face it, I don't know about anyone else but before BC I was quite a prude when it came to them, but now, just about every man and his dog has seen the one I got left, not that it is pretty to look at, but the "PINK POINTERS" may become extinct if the future generation isn't careful in preserving and protecting them. Some females do it professionaly all the time so there is a market for it, just a thought. Not too many men look the other way when they see them coming.

Love & Hugs Lyn

[jhandley]

Hi Sandy
I am about to start on Herceptin in two days time for the first time with Taxol as the accompanying chemo. good to hear it worked for you.
Jackie

[Lisa]

Friends,

For those of you who seemed to take offensive at my thread starter, please re-read it. It is imperative that we share experiences and research discoveries with one another. I just didn't feel right about members talking about curing others and definitively stating which supplement to take or not. As far as I know, there is still very little black and white about this damned disease.

Which is why we're all together here.

Love and light to all,

Lisa