Starting Chemo March 2015

pboi

Special...glad to hear you're done and itwent well. I haven't started Zometa yet, and noticed you had the Prolia injections. Did you consider Zometa? I know they are different drugs. Is the Prolia more effective? Pros and cons doing one vs. other? I definitely would rather have an injection vs. infusion. Wondering if I should ask for Prolia instead?

PB

Italychick

SpecialK, awesome that everything went well for you!

Trvler

Awesome news, Theresa! I know you are hugely relieved.

K: I am glad everything went well for you, too. ( I was telling someone about you today. Met a 10 year survivor at my daughter's IEP meeting.)

MO called me again today wondering what I was doing. I sent her a Dear John email. Hopefully, that is the end of her. I was sickly sweet, as she was.

SpecialK

Thanks all! It was a long day of incredibly boring sitting around - like being in an elevator - nobody was talking. That is why I think I probably posted too much on BCO, lol! I got up to get coffee and started chatting with the people near the Keurig and pretty soon it was a group convo!

trvler - glad the firing is done, I'm sure it's a relief! Funny I came up in your conversation today!

pboi - my MO likes Prolia because of the mechanism by which it works. Zometa is a bisphosphanate which costs the bones to strengthen them, which can make them brittle and less elastic. Prolia is a monoclonal antibody, like Herceptin, and it works for post menopausal women by slowing old bone removal and allowing the new bone creation to catch up. This is a process that seems to have a lower spontaneous fracture rate. I think it is probably more expensive than Zometa, and it is a twice yearly sub-q injection, the cartridge is very similar to Neulasta. Some have had issues getting insurance to cover it - seems to be a smoother process when requested by an MO than an endocrinologist

Trvler

K: Not that funny. I have told many people about you.

SpecialK

trvler - I'm flattered, and so glad if our interaction has brought you info, reassurance, or comfort of any kind

ksusan

SpecialK, glad you're past that. Heal well. Do you have a URL you like for the Virgin Diet?

SpecialK

ksusan - thanks! I have to rein myself in from being too active - the derm is concerned because this in low on my shin so has the propensity to split open so I need to be good. When I started the Virgin diet I downloaded her ( JJ Virgin) first book. It was just ok. You can basically use the linkedsite, but if you want some recipes this later book explains the premise and has good recipes.

http://www.amazon.com/The-Virgin-Diet-Cookbook-Del...

http://www.chewfo.com/diets/the-virgin-diet-by-jj-...

I can also PM you a list of products I like because they fit the parameters of the plan - since eating much that is processed is not allowed it took me a while to identify things I could use - that was one of the hardest things because it involved so much label reading

KBeee

Special K, glad all went well.

Leigh, one of my Sept 2013 chemo sisters just recently got Aunt Flo back. Do not take chances because you should not get pregnant while on Tamoxifen.

SpecialK

kbeee - thanks! How are you doing

ksusan

Thanks, SpecialK, I'd appreciate that.

SpecialK

ksusan - I will compile it and send it to you tomorrow. Doc instructions - no standing today, and I need to peruse the pantry/freezer/fridge

pboi

SpecialK...I'm interested in the Virgin Diet too. Can you PM me your list too? Thanks in advance!

And thanks so much about the info about Prolia and Zometa. I'm going to ask my MO on Monday about them.

PB

ksusan

Thanks, and no hurry.

Italychick

SpecialK, me too? I gotta stop being a fat ass. I'm probably the most in shape fat person I know

Meme117

congrats Theresa ! R u going every 3 months then? With all your biking I'm surprised the weight doesn't fall off.

Glad to hear all went well SpecialK.

Going to nutrition class next week and to a class on cutting out sugar the following week. I don't use sugar but I've yet to start reading all the labels.

Katie I received an email about the makeup in the look good class from the breast cancer action group, good job maybe changes will be made.

Italychick

Maryellen, yes, every three months. But my understanding is that most of the follow up will be physical exams. My breast doctor feels me up pretty good lol. I do have an MRI and a PET scheduled next year, but am doing some hard thinking about those tests.

I think my exercise kept me from blowing up like a balloon, but I did gain around 18 pounds during chemo, so I guess it will just be a slow process to get rid of it. It's hard because I lose fat, but gain muscle, so weight loss is slow. Breast doctor told me today I look thinner, but the scale doesn't agree. Well, it is down 6-8 pounds depending on what day it is.

As for sugar, just avoid processed stuff. All processed carbs become sugar pretty quick. The biology class test used to be put a piece of bread on your tongue and see how quickly it tastes sweet.

I gotta quit eating cookies, that's a big part of my problem. But they are so darned good

Trvler

Ok, this story just keeps on giving. Remember when I has such a struggle about my husband's niece babysitting while I was gone because she is irresponsible? Now she wants me to write her a recommendation letter. Ugh. I can't even think of anything good to say except my kids love her because she lets them play on her phone all the time and plies them with sugar? Does that sound good?

SpecialK

Since there are several who want this list I will just put it here! The Virgin Diet is hard because it eliminates so much, many look at the plan and say "I can't give that up" so you really have to be committed for it to work. I don't really think it is a plan you can do some of the time - you won't receive the benefit. I should add that I lost the weight gained with chemo and the first months of AI drugs, down to less than my pre--chemo weight (which I thought was already about 5-10 lbs. more than I wanted to weigh) during the spring of 2014 when I had three surgeries, almost back to back. I did zero exercise and still lost 22 lbs. My former boss who introduced the diet to me lost the same amount of weight, and improved her arthritis in her hands - which was her reason for doing the diet to begin with - the weight loss was a happy by-product.

Cutting out corn, soy, peanuts, eggs, gluten, dairy and sugar is HARD. Most of those ingredients are hidden in most of the food we consume that is not in its whole form. You have to read labels, and you will find that if you follow this diet to the letter, you can't eat very much of what you were eating, or drinking. I had already eliminated dairy and soy prior to starting this diet, but I didn't realize how sneaky soy is, and found more corn and sugar in things than I thought was there. The way I found was easiest was to just use fresh things, some frozen, and very little that was canned or processed. I do use canned tomatoes and beans, but I use organic ones and try to find them in cartons rather than cans. We aim for low-glycemic, mostly organic, fruit and vegetables. So limited potatoes, grapes, bananas, fruit that is super sweet is obviously higher in sugar.

If you are an intuitive cook this should be relatively easy. If you need a recipe, you may need the cookbook, but I found that I developed a few recipes - usually combos of lean protein and vegetables over quinoa or brown rice, wild rice, or gluten free pasta was my go to. I made a lot of salads with different combos too.

For breakfast we usually did the shake (1/4 c. frozen organic blueberries, 1/2 c. frozen organic strawberries, 1 scoop of PlantFusion Vanilla Bean Protein Powder, enough unsweetened vanilla almond or coconut milk to get the right consistency), gluten free waffle with almond or cashew butter, gluten free oatmeal with berries. I usually get Van's waffles, and Bob's Red Mill gluten free quick oats.

Lunchs/Dinners were salads, or a plate that should be about 1/4 lean organic or grass fed protein, 1/4 of brown rice or quinoa, or gluten free pasta, and the rest low glycemic veggies. I followed the Clean 15/Dirty Dozen on which to buy organic.

Here is a list of stuff I keep on hand: frozen organic berries, lots of green vegetables, kale, romaine, sweet potatoes, strawberries, blackberries, blueberries, apples, occasionally pineapple, fresh salsa, or jarred organic salsa, different kinds of beans, individual packages of prepared organic brown rice, frozen bags of cooked quinoa, I cook up chicken breasts and rib eyes and portion them and freeze them for salads, also ground turkey and ground beef.

Prepared foods I use: Earth Balance Soy Free "Buttery Spread", Wholly Guacamole individual packs, hummus, Drew Roasted Garlic Salad Dressing, Drew Smoked Tomato Salad Dressing, So Delicious Coconut coffee creamer, So Delicious CocoWhip (coconut milk), Califia Farms Butter Almond Milk Pecan coffee creamer, So Delicious, Silk or Blue Diamond unsweetened vanilla almond or coconut milk, Cindy's Kitchen Barcelona salad dressing, Whole Foods 365 cooked beans, Pomi cooked tomatoes, Stubbs Barbeque Sauce, Mia's Kitchen pasta sauce, Barilla gluten free pasta, Tinkyada or Trader Joe's brown rice pasta, Just Mayo "mayonnaise", Wanja Shan organic Gluten Free low sodium Tamari soy sauce, coconut oil, brown rice flour, coconut flour, stevia, taco sauce.

I do occasionally use a splash of soy sauce in cooking, but use the one mentioned above. The reason soy is eliminated on this diet is due to the exceedingly high percentage of the crop in the U.S. that is GMO, and therefore doused in a lot of pesticide - same reason for the corn, So, I will occasionally use organic soy and corn, but very sparingly. Also, with sugar - it is very hard to eliminate it completely, so I try to stick to things with 5 grams or less - the coffee creamer and barbeque sauce above, and I only use a little.

One thing that people find is that they will incur some expense when first starting this way of eating. You will find over time that you have less "stuff" in your fridge and pantry - sauces and things. For me, the cost ended up evening out over time because I needed more whole foods and less processed ones. Hope this is helpful - ask me questions if you have them!

ksusan

Thanks, SpecialK. That's no so far off from what I usually eat now (though I take the point that this is a diet where "almost" doesn't count). For me the difficulties would be that I have diabetes (so a lot of the gluten-free grains are a blood sugar problem) and my wife has a number of food intolerances (acquired as a side effect of HCV treatment), so beans, for example, are out if we're going to cook anything we can eat together. Still, I think it would be possible to follow this for some period of time. I'm hoping to kick-start my metabolism and knock down to a BMI of 29 (about 10#). At that point, I'd be happy to hang at that weight for a year to reinforce it as a new set point.

SpecialK

Sitting at the MO waiting to get my port flushed, and realized I forgot to add that I keep all kinds of nuts in my freezer. I also haveEnjoy chocolate chips, which are dairy/soy/nut free. I like to make a little cup of trail mix as a treat with the chips, nuts and some dried cranberries. I use about a tablespoon of the reduced sugar Craisins - I have it maybe once a week.

pboi

Thank you so much SpecialK, it is so helpful. I appreciate it!

PB

SpecialK

ksusan - if you are eating pretty much this way now, it probably wouldn't be hard to adapt this and just don't include the things that are problems for you and your wife. There is no requirement to eat gluten free pasta or beans, it is just that you can if you want to - so if you can get along without pasta, beans, etc. you can still do this. Having a co-morbidity that involves certain foods makes this tougher but not impossible. While weight loss is a facet of this way of eating the primary focus is inflammation - which can keep people from losing weight even on a sensible diet - like I already was doing too. I was actually pretty surprised because it didn't seem that different from what I was already doing but the elimination of sugars from all those hidden sources, the change to non-GMO and GF stuff, worked for me and everyone I know that has tried this. What you can do is try it somewhat short term and see what happens - but I will add the disclaimer that it took a little while for the weight to start coming off, but then it was steady - a pound a week.

pboi - happy to help. I do have some recipes too if you need them, but I do a lot of Greek type salads, pasta/rice/beans with veggies or marinara and beef or turkey, roasted protein of all kinds with salad or veggies and quinoa/brown rice. Living in Florida lends itself to a lot of salad eating year round because it is hot outside, so it makes this kind of easy - we do a lot of main dish salads for both lunch and dinner. I actually even have a waffle recipe using no flour or eggs - we have them with berries that have been cooked down to a syrup instead of maple syrup.

Eliminating sugar, in the form of overt things, like in your coffee or desserts, is hard for a lot of people and you may be cranky for a couple of weeks. Once that has passed you may find that you have no sugar craving. I am not tempted by dessert and I find if I have something I am good with a bite or two. I now find desserts to be cloyingly sweet and actually don't like the taste of most of them anymore. Weird, I know.

ksusan

Thank you. I eat in a pretty South Beach-y way but I can make a commitment to something more stringent/adherent at a time that works (like, not when I'm heading to a multi-day conference where most of my food is provided during mealtime speakers). My preference is to work from whole foods anyway. No dairy or eggs is a challenge because I'm finding meat nauseating and can't eat many beans/peas/lentils or my blood sugar will rise (also the problem with gluten-free pastas--many have 40-70 carbs/serving and I can't eat that and maintain my diabetic health). It's an entertaining puzzle.

molly1976

I quit sugar for a while in my 20s and would get a headache if I ate even the smallest amount! It's potent stuff.

Special, what do you typically order at restaurants? I have been vegan before and it was eating outside the house (restaurants, at friends' houses, etc.) that made me quit. I find it really easy to eat a restrictive diet when I'm doing the cooking, but it's so much harder when the options are out of your control.

SpecialK

ksusan - whenever I wanted to lose a few vanity pounds I always did South Beach and find it to be an awesome plan. It is a great way to eat permanently, the Mediterranean style is super healthy, and I think what most people should do. I tried to do that after treatment and it no longer worked for me, I was so bummed because it is food I'm naturally inclined to eat.

Molly - your post, and ksusan's, regarding what to eat away from the house is what makes the Virgin diet somewhat problematic. Generally, I order a salad at lunch, or steak/grilled fish/chicken and a salad for dinner. Unfortunately, I turn into the Meg Ryan character from When Harry Met Sally, and ask for things to be left out, or on the side, etc. there are a couple of places near my house that have great fresh food that hits all the marks for this diet, so we usually eat there, if we go out. I think it also surprises people when restaurants will customize orsubstitute for you though. Honestly, we don't go out to eat very often, I tend to want to cook at home - old habits, I used to be a caterer so if I can cook it better than the restaurant can, I don't want to pay for it, lol!

Carrie37

My foobs hurt. Does it ever end? I am in such a bad mood!! I already posted on another forum but I hate these TE's. I can't even stand it. I wonder what it feels like to live without some sort of ache, pain, or side effect? Feeling very overwhelmed. Saw my counselor yesterday too which helped some. But damn these TE's!!!

IndyGal35

Thanks for the great info as always, K!

Carrie, I have been struggling with my TE's so much too. How expanded are you right now? Can your doc do smaller fills further apart?

Remember how I told you guys that my cousin's friend (our friend now too) got a liver transplant in Indy this week? Well, we woke up in the middle of the night to the craziest phone call from my dad. After many years of constant septic infections and a low MELD score (8-10), my dad has also been on the liver transplant list for 3 years with zero momentum. Somehow, a liver came through for him overnight!

It took several hours to get an all-clear, but we got to the hospital around 5:30 AM, and he was transplanted by 10:30 AM today!!! He's still on a vent, but they are weaning him off of it as he starts to wake up. Its the last thing I ever expected, and, strangely enough, his ICU room is literally next door to our friend's. The Lord works in mysterious ways. Organ donation is such a precious gift. I am grateful to the donors' families tonight

Jackbirdie

Lee- that is amazing. Sending healing thoughts to your Dad, your friend, and both of your families.

DavisD

Carrie and Lee-It will be so much better when you get those damn things out! I feel your pain and remember it well.

Theresa-So glad all turned out well! you deserve some good news:)

Haven't been online much. Struggling w/fatigue and nerve pain again. I'm hangin though