What resources would you like to have?

Jodiejw

Dear All,

I work for a company who are looking to put together resources for people diagnosed specifically with Triple Negative Breast Cancer, carers of those diagnosed and health care professionals. It would be great to hear from you all with regard to what resources you would like to be made available/ information you would like to have access to/ formats you would like the info to be available in. All ideas are welcome!

I look forward to hearing from you all soon.

Kind regards,

Jodie

dklaus

Hi Jodie,

I myself would like to have more information available on what exactly triple negative means and the impact that diagnosis has on treatment protocol. Statistics on exactly how rare are nice but unless they are realistic, forget about em. What treatment is common right now for different stages, grades,and lymph node involvement or not. Why certain chemo regimes are used. Information on what to watch out for after treatment ends. What exactly certain levels mean when taking those blood tests. Are there markers for triple negative and should they really be used? Written papers are a good avenue. Web sites are good but they need to be reassuring. Lists of trials currently going on and doctors names who are really up on treating triple negative and their locations. Basically all the information in one location.
Good Luck,
Debbie

Gagal

Wow,
I second what Debbie said, she pretty well covered it all.

Thanks

FloridaLady

I live in hope of more info. But I don't see it any time soon. I have been told by 3 cancer ctr's they do not have enough info done by researchers. All they know is each one of us could be very diff. and they can not find the common receptor. If you still have primary diease without mets. Example: Me 2nd mast. 27/28 nodes positive. Taken 7 chemo all failed. But no mets now. I was told I was ahead of technology by MD Anderson Houston. They do not have anything to offer except Phase I trials that really don't have a lot to offer me. They want me to try a Lukiema drug (not chemo) that they found I have a receptor for???? If you have mets they can better treat the met site but not solid tumor without mets.

Would they please move a little faster with research! They told me it could be a few years before they really know more.

As for resources: I like websites with current info from the US and what other countries are studing since they are five years ahead of the US. And what in clinical trials and with previous related trials results. Also what new info on treating side effects.


Living in hope.

PineHouse

Like FlaLady said: Move faster w/ research!!

And certainly FDA approvals! I read about a few "promising" drugs on pipeline, but unless they're approved by FDA, my oncologist may not give them to me. And I have mets... I don't have too many drug options left..

I guess I would like to get a lot of resources available, but at this point I don't know yet how to put those requests into words.

Maybe some list of alternative therapies (high-dose vit C, hyperthermia, pancreatic enzymes, etc.) and/or complimentary therapies (acupuncture, visualization, supplements, dietary changes, supplements, etc.) and their resources.

Renairis

Hi Jodie,
What a great question to ask-what can be done to help? I've been thinking about that alot too lately.
First I agree with everything written above!
Second, there are many women who are triple negative and brca1 and 2 positive. Financial Resources for research and funding for Universities and research compnies looking for different cures be it chemical, biological, and GENETIC are very important.
FDA apprval as listed above: the sooner the better. This is of utmost importance. In many countries, drugss won't be sponsored by the government or recognized by insurance companies ,if not FDA approved. For drugs that may be life saving, quicker approval is crucial.
User friendly sites for all new research being conducted for triple negative.
Rena