Good & Bad about Rads?

Fla Lady,

You have certainly been through the ringer, I hope you find something that works for you soon.  I think that doctors don't treat us like individuals because of the fear of a lawsuit.  They can hide behind their standard protocol guidelines which works for most, so they don't have alot of motivation to step outside of those and do something novel.  I also don't think many doctors do actual research, I think they implement the receipies developed by others.  You have been to the major breast cancer research centers, but at those, rather than treating your particular disease, I think they try to fit your disease into the research they are interested in and have been funded to pursue.  I wonder if at MD Anderson you had ended up in a different principle investigators office if you wouldn't of ended up with a different treatment.  Unfortunately, as you have found, I think its up to us the patients to figure out what we think will be the best treatment and then go seek that out, rather than a doctor deciding what is the best treatment and sending us there to get it.  Its an easy job for those whose breast cancer is the garden variety, but almost impossible for women whose disease is not.  I have wondered why the doctors aren't interested in discovering what about your makeup is preventing mestatsis.  Perhaps there is a protein or something that is inhibiting the spread to distant organs.  That would seem like an exciting discovery if they could pinpoint it.

Hi Ladies-

I had a "breakout" of skin mets in June while taking Abraxane/Avastin.  There were only a few spots at first, but then in a matter of weeks, they progressed to the opposite side of my chest (left side had original tumor plus inflammatory breast cancer last year) all over the right side of my chest.  I had bilateral mastectomy last September.  Because these skin mets are creeping all over my chest and I have noticed a rash also, I have been recommended to have radiation to the right side to try to control the skin mets.  I am willing to try it because they are growing and spreading  rapidly.  I hate that I have to have radiation AGAIN but I honestly do not know what to do at this point.  I will also be starting a trial of Alimta and hopefully that will treat me systemically.  

I agree with you FloridaLady that since you had a recurrence so soon after completing radiation, it did not "work" for you.  I had a recurrence after 5 months.   The doctors just don't have a protocol set up to treat skin mets.  I will try radiation again because I cannot stand to see this spreading on my chest and hopefully the chemo Alimta will help the cancer on the inside.  

Ugh!  This is all so frustrating.  FloridaLady--are your skin mets stable or growing?  

~Hugs

Laura 

Hi Florida Lady-

I will definitely look for curcumin and give it a try.  My skin mets are out of control (on my stomach and creeping toward my back).  My radiation oncologist who has 25 years experience with breast cancer said today that I am one of his biggest challenges.  Ugh.  He is going to keep radiation going to my right side twice a day but is not sure what to do with left side since it had its limit of radiation last year.  Radiation did help me get my cancer under control last summer, but I guess it did not irradicate ALL the cancer since it came back.

I had my first chemo yesterday of Alimta (not an approved breast cancer drug) and according to a skin biopsy of the mets and a molecular profile this chemo should target them.  I will have to wait a few weeks and see if there is any change for the better.  I feel like the skin mets are spreading like wildfire...so I will try curcumin.   I was diagnosed with inflammatory breast cancer last June so I know the cancer is in my nodes and now traveling aound via lymphatic system.  So far it is only in my skin and nodes in neck, no other organs involved. (Something to be thankful for.)

I have had Adria/Cytoxen, Taxotere, Xeloda with radiation, Avastin, Abraxane, Taxol, Sutent and now trying Alimta.  I am triple negative.  I think I may need to try Gemzar or one of the platin drugs.  I just hope I still have time to try out some other chemos before this friggen disease kills me!  

So tiring to be fighting this for 20 months straight with no break in action.  I agree with your first post above that we as patients have to make the decisions on what we think works for us.  Leaving it up to one doctor to decide is too much like a shot in the dark.  I stay active in my treatment, we all have too.  Its just hard to make such important decisions when we are already under so much stress with the side effects of the treatment and the shock of the diagnosis.

Thanks for listening.

Laura 

Hello Lauralynne, Flalady and Watergirl and all,



I saw FlaLady so had to read her update; sounds good to my ears, FlaLady! I know though how frustrating to not be able to just take one medication to rid it all. The homeopath sounds very interesting: just verify before you try anything too new.



I wanted to write about the Curcumin. Lauralynne, I hope you might ask your radiation oncologist to research the new papers out on it. Curcumin has been found to be effective in undoing the effects of a protein we get after a lot of chemotherapy (much more common with multiple, different chemotherapy, not as common with initial breast cancer treatment with chemotherapy, please don't confuse this), called multi-drug resistant protein, of MDRP. This MDRP is a small molecule, and very common and unfortunately, unless it is reversed, chemotherapy has trouble working.



I am not big on natural agents, being more a believer in medicinal agents. I stumbled upon Curcumin when I was reading generally about chemotherapy failure and resistance to it (again, not common with initial treatment regimens). Now even I knew that Turmeric contains Curcumin, and that it has been used in the middle east for years as a natural medicine. So, I looked a bit deeper and found that it has been so effective, now clinical trials are starting utilizing it.



Curcumin has side effects: primarily GI, upset stomach, trouble if you have biliary problems. There is an encapsulated form to help bypass the stomach.



It appears Curcumin is particularly effective in BC patients with skin mets, while they are taking a (new) chemotherapy.



So, I just wanted to let you know about this. You have to make your own decision. Maybe you could research it a little, or , if you are too sick, I can try to help you.



I will keep you all in my thoughts,

Tender

Edit addendum: Well, looking at a paper on oral absorption of Curcumin suggests it takes a lot (6 to 8 grams of 66% pure curcumin), and doesn't go far behind the gut wall: just low levels of serum curcumin were found, if much at all. So, obviously while animal studies show a benefit, they're going to have to refine their knowledge on how to get it into the bloodstream before we see any of the benefits listed above. What a shame. I'll post more if necessary after I review a paper by M.D. Anderson Hospital.T.

Hi, Floridalady: Thanks so much for your informaiton. My sister is knocked down by the news - mets to liver. We will wait for pet scan next week and get more detail for the situation. You have mentioned "hair net" and radiation damages cells and blood flow, would you tell me more about it? Thanks.

How was your day? Are you still working? Take easy!!!

Jin