Worst News/Good News

FloridaLady

Worst... I still have cancer after 7 chemos and two seperate mast. Just got results of Pet. A couple nodes up deep under arm pits on both sides. Already had radical mast. both sides. Doc in Fla have no treatment known to help me at this stage. (after 7 chemo no response) Good news no mets after 19mths of continued tx. I now have neruopathy that has completely disabled from work and life due to MD Anderson trial I just did. (I'm typing with a pencil) My family does not want me to go back to Houston for Phase I trials after the knowingly gave me a extremely toxic does. 250mg when 180 mg approved the next month. I tired of the medical community telling me they don't know what to do. I am moving to alterative medicine until they have some facts on how to tx triple negs with no mets.

I am not a large rat for billion $ drug companies.

Living in hope.

TenderIsOurMight

Dear FlaLady,

Typing with a pencil due to fingers being numb and clumsy, and you still have a sense of humor in your post. You are one strong Lady!

I guess one question I have is will the PET show a change in a few weeks in the arm pits, since you just finished therapy? Your immune system must be working, in addition to the past chemotherapy, as your PET was otherwise negative.

Treatments for neuropathy focus on the Neurontin and Lyrica. I got a lot of fluid retention from them, which caused my blood pressure to rise, so be aware. Plain old, and cheap amitriptyline (70 mg, tad higher) is helpful in taking away some of the lancating pain, so you might check into this with your doctors if you have no heart problems to contradict it's use. No drug takes away numbness, but tincture of time may. Oh, I feel for you...

Sending good vibes your way,
Tender

PineHouse

Fla,

Sorry I'm on the board here only sporadically, so I'm not familiar with your chemo history.

Are you saying that you've been on various chemo for 19 months and nothing got rid of cancer in your armpit nodes? But they don't grow either, right? Would you call this a "stable" disease? So your chemo(s) were actually able to control your disease but you can't take them anymore because of side effects?

I have had quite a bit of chemo myself for the last 10 years, on & off. I'm battling lung mets now. Although the current treatment (Carboplatin) seems to work, I'm constantly searching for and trying to learn about alternative therapies.

I know there are many promising drugs on the pipeline, but I'm sure my onc won't give them to me at this point (I anticipate needing them soon) since the insurance won't cover.

I do believe alternative therapies are not less effective than chemo. There is just no documentation or enough studies on alternative therapies showing what kind of therapies are useful for what kind of group.

I also agree with you that each of us is unique and we don't respond the same way to treatments. You mentioned that you may be offered some drugs for leukemia. I think your oncologist kind of stepped out of general “guidelines”, thus customizing your treatment. Maybe it’s worth considering. Remember there are drugs used for bc that were originally approved for other cancers such as colon cancer, non-small-cell lung cancers, etc.

Wish you the best outcome. Soon!

Lisa40

I can only imagine how discouraged you are, but try not to give up. I sure you've heard the expression if at first you don't succeed try, try, again. Have you already tried Sutent and Dastabanib(SP?) ? My onc. mentioned both of those in Feb. as options. I think it is time to contact and interview other doctors. I know you don't want to do clinical trials and I don't blame you. Maybe there are some phase 3 drugs that are out? I hope you are able to find a new doctor that will go to bat for you and keep looking for new drugs. Hang in there. Lisa

TenderIsOurMight

Dear FlaLady,

Perhaps turning some of your energy now into preventing muscle and weight loss would be of great assistance, as you wait to see what decision tree and re-tests show. Avoiding cancer weight/muscle loss, also known as cancer cachexia, is a truly worthy and life-sustaining goal.

As it's not a commonly referred to term, my take of cachexia is as a generalized, system wide process in which an inflammatory reaction cascade (visualize a waterfall), muscle wasting or loss, weight loss, glucose intolerance, and shift to oxygen deprived (anabolic) pathways in blood and tissue ensues. Unfortunately, this cascade of events is harmful.

Surprisingly, nutritional intervention in terms of high calories in diet, when studied did not improve weight or lean body mass. So more than just high calories appear needed, and some are pursuing work on the hypothalamus (a part of your brain up and behind your upper nose) appetite-suppression signals by suppressing the signal, using an old breast cancer standby megestrol and medroxyprogesterone acetate. These do result in an appetite increase, but the weight gain is not so much lean muscle but water and fat. While the final results are out, it may be worth discussing with your oncologist to see if he might consider them now or down the road a bit.

There's evidence the thiazolidinediones (pronounced THIGH-ah-ZO-li-deen-DYE-owns) like Avandia and Actos and used in diabetics to counter insulin-resistance, may be of benefit in preventing cachexia. Sounds counter intuitive, as if your thin, without a lot of adipose (fat) tissue, why would this work? Well, your fat cells get active and start secreting free fatty acids, and this causes some degree of insulin resistance. So this drug class, enhances our insulin sensitivity in our tissue. These may also help maintain muscle, so important in how we metabolize products in general.

To counter the inflammatory cell cascade waterfall- contribution to cachexia, fish oil appears helpful (scientifically called eicosapentaenoic acid (EPA for short), and one of the principal omega-3 fatty acids. But always only if your doctor agrees and no liver damage is present to begin with. EPA works by inhibiting a protein called NF-kappaB (NF-kB), which plays a major role in cancer cachexia. Curcumin also similarly interferes with synthesis and release of inflammatory cytokines, all of which contribute to local changes in our tissues.

Green tea works too, causing inhibition of VEGF (vascular endothelial growth factor) expression and tumor cell growth in breast cancer cells by novel synthetic analogs of the green tea catechin, epigallocatechin-3-gallatin. But I'm sure you know this already.

Well, this is a brief summing up of cachexia prevention efforts. I didn't mean for it to be too complicated, but these drugs, it seems to me, may offer an additional path to good health during these trying times for you.

Lastly, I'm sure you know about the monthly intravenous bisphosphonate, Zometa (zoledronic acid) in helping to prevent skeletal-related events (SREs). I don't know your details too much, so just mention it to lend a hand.

I hope this helps you. I will keep you in my thoughts daily.

Tender