March 2009 Rads Group?

Thank you Jeanne.  I agree with you about family.  We have some friends that are very wealthy but have no relationship with his kids at all and her family is suing her.  I'd rather be broke and have my family.

We love her boyfriend dearly but he's a celebrity here in our small town (football) and it's horrible being the girlfriend.  There are girls all over him.  I wish she would have met him after his football career.

You've mentioned not taking Tamox several times now.  (wasn't that you?) Why would you not want to take it? 

Ah nelia- that explains it! It's a wonderful poem, I had no idea that was you!  

I agree Jeanne.  Lots of scary side effects can come from medications.  The question I asked myself prior to making my decision is "What would bother me more, not taking Tamox and getting cancer or taking it and suffering other side effects including other cancers."   There are precautions that I have taken to prevent some of the side effects (my surgery last week) and I will monitor the others.  No one will be standing around talking at my funeral saying, "She was afraid of the side effects of the anti-cancer drug so she didn't take it.  Now she's dead.  What a waist."  It's a no brainer for me.  I'm also an odds player.  Have you looked at the odds of getting other cancers associated with Tamox?

I actually feel better now than I did prior to BC.  I don't like the Hot flashes but I would have gotten them anyway sooner or later.

How weird is radiation fatigue?  Saturday I attend the funeral (after the whole battery jumping/gasgetting thing) 2 hours away, drive an hour to visit a friend in NJ, have dinner, drive the 1.5 hours home, then do something stupid I admit, eat another dinner at 11pm and work out on the elliptical trainer out of guilt at midnight for an hour, have a cookie, crash.  

Sunday I begin to fade until I am barely moving. And I am sick from reflux- completely my fault.

Monday I can not move.  I can not wake up.  I am awake for barely 30 minutes in the morning because my kid is crying for breakfast, the instant the nanny shows up I crawl back to bed and stay there. Asleep.  until 6pm, I barely give the kid dinner, put him in his bed and go crawl back to sleep.  Water, chicken consommé- no food.  Reflux meds.

Tuesday, repeat Monday- although I feel much better.  I think I stayed awake most of the day, yes.   I add a bit of food and matzo balls. Finally bathe (not since Saturday, sorry TMI) and brush my teeth, wash hair. Remember the car is 2 month's past (April) inspection because I couldn't drive during RADS and schedule appt.

Today, 7am woke up early with the kid, gave him breakfast, then his bath, then early nap.  Bathe, finish packing for trip, strap the kid to my back, 1130am carrying the packed bags and kid the block or two to my car.  Surprise! The battery is dead again.  Guess it can't hold a charge.Pack car while the guys jump  it again.  Arrange for battery at the inspection.  12:18pm First time ever driving with the kid in a forward facing upright car seat, first time since he could walk and he can't sit still... He turns out to be a fabulous passenger!!!!   Still  not enough gas to make it to Philly, do the same stupid thing filling the tank while the car is running.  All the while I am passing him apples in "feeders"

refilling feeders while the gas is pumping..

2:06pm Arrive Philly parking garage practically on time.  Carry kid and his togs around the block to pick up some milk for his late lunch.

At the DDS I asked about the effects of Zometa and the possibility of osteonecrosis. My DDS is awesome- the director of the U of P dental school, qualified periodontist, endodontist, specializing in crown and bridge work (I have an implant and a whole lotta crap done in my mouth.  When I was a kid I had a tooth coming out by my nose). I am concerned about more then 5 years on a drug that could cause these horrible things.  He explains that osteonecrosis generally happens to patients who have problems in their mouth already,leading to infections.  Even still, there are proper treatments.  He reminds me that Zometa infusions taken by patients who don't have breast cancer, those with osteoporosis- the ones Zometa was intended for and other's like an older patient he has with Padgett's Disease (sp?).  They are on Zometa a very long time and still have dental work.  He sounded much like my BS when I asked if they could do surgery after radiation if I needed it on that breast.  They have to know what they are doing and be careful.  (of course that makes me wonder about all the docs who are "not careful"???)

and another thing, the last time I saw them (the last time I drove my car aside from Saturday) was before I knew if I was doing chemo, before I knew anything about RADS, before I was truly a cancer patient.  It was weird to be treated "normally" again by medical people.  Weird in a really GOOD way.  I don't know how to qualify it, but just the way the hygienist (who I have known for 20+ years) was so polite about asking me every little thing- instead of the gulag: NEXT, strip, put your boob here, I'll answer your question about the pain and fear you are in with a smartass responses I have become accustomed to.  It felt normal

4pm put the kid in the backpack again, grab his stuff and schlep him to the garage.  Car is dead again.  Get the guys to jump it.  I have known them 20 y ears too.

430pm arrive car shop, again, known them forever, pull everything out of the car, that is, not just what I packed today but also what I packed on Saturday.  It takes me longer to get all this and the kid otu than it takes them to complete inspection, check tire pressure, change the battery and send me on the way.  Repack car and kid

6pm, arrive at dinner with dearest friends in the world.  He went to law school with my Mom, he's like 85.  Show the kid off, he's adorable but yawning... it's bed time for him.  Dinner out with a 16 month old baby- 'nuff said.

8pm, drive home to NYC

10pm arrive home, put kid on back, unpack car- run into neighbor and make him carry the crap back to the building.  Put kid to bed, wash all the kid stuff from the day.

And I am still wound up.

Wonder if tomorrow I will crash like a meteor again and can't wake up all day.

Radiation Fatigue- one month later. 

Rachel...my experience with post radiation fatigue has been that if I "overdo" then the next day I absolutely crash.  Now, the weird thing is that the "overdoing" is in my mind, not overdoing at all. For example, I helped a friend open her cottage last weekend. All I did was help to pack up the vehicle - we didn't take much up at all (2 coolers with food, our overnight bags and a couple of boxes with cottage stuff), put the food away, ran the vacumn over the main living area - that was it for Saturday, Sunday we packed up the vehicle with the empty coolers and our bags...then drove back to her place. The drive to the cottage is about 90 minutes.  Monday I was soooooo tired I thought I would collapse.  So reading what you did, it doesn't suprise me in the least that you had a huge fatigue collapse.  While it may not seem that you are doing to much, you probably are if you are getting the fatigue that you describe.  You truly need to cut back and build up very slowly ...frustrating as all "you know what"!!

Hi Mfgibby,

    I love your picture.  Darling family!  Thanks for your information.  I don't have the BRAC gene, so, that is another reason that it makes sense to maybe not take the tamox.  And, I know there has been a lot going on in your life.  I just took my paperwork out and went thru it, as, I would never have remembered the percentages or anything.  lol 

     Anyway, thanks for the reply.  Have a nice evening!

  Jeanne

Kristi- boy I never heard anything about sugar stimulating estrogen or anything like that!  The only issue I know of is the ol' weight issue, and sugar being generally not nice, not nutritional, making you feel wiped out after the sugar rush and all that, but i never heard anything about sugar and cancer.  Jeez, have a cookie!  Have two!  

The deal with soy is- bottom line, they don't know.  (One kind of evidence says it's bad, one says it's good, another says it doesn't matter... ) They are currently finally doing studies that should end the dispute, but it will take years.  Until then,  I figure, if I am doing all this other crap I can avoid soy until they rent a clue.  (more about it on susan love's web site)

Here's more good news... if you are having hot flashes on Tamoxifen, then your recurrence rate is even lower!  I just posted a bunch of links on the Bottle O Tamoxifen thread... but here's some:

Tamoxifen-induced hot flashes cut breast cancer recurrence

Hot Flashes, Night Sweats a Good Sign for Breast Cancer Patients 

Meanwhile the whole City of New York is having a freakin Hot Flash today...

So yeah baby, YAY for the hot flashes!

Eh Mary, not surprising.  You can be feeling the effects for months... or even a year or two.  I try to think of it as it continuing to fight the cancer cells that long... 

Then again, you said a "great deal of pain"... which might be something else?

Very sorry to hear you're feeling pain

Mary, I also finished rads on April 15th, and I still have some pain.  My ribs are killing me and I can't sleep on that side.  And since my port is on the other side and digs into my chest when I'm on that side, I'm left with staring at the ceiling!  I also notice that when I carry in my groceries, the rest of the day is done for.  My back aches on that side, my underarm  hurts, and the chest area hurts.  I know I should NOT carry so many bags at one time, but I hate all the trips into the house.  I don't know how long it will last, but sometimes I worry about the rib thing.  I shouldn't, as everyone is complaining about it, but I hate all these nagging pains.  I'm feeling more and more like an old lady!

Hi Mary,

First, there is no such thing as a stupid question when it comes to bc or treatment, and, if someone tells you there is, then they are ignorant! 

Second, pain with rads is normal and my radiation oncologist said it can last for weeks, months or even a year.  There is no set time when our bodies heal from it.  We all react differently, just like we all had different radiation inre to treatment, machines, amount and so forth.

I hope you feel better soon.  I take prescription Ibuprofen for the pain that I have been having and it works great. 

Good luck!

   Jeanne

Kristi, Soy doesn't stimulate estrogen. It contains isoflavones some of which act in a similar but weaker way than estrogen. The issue is they don't know how these act in the body. They might bind to estrogen receptors and act like estrogen to encourage growth or bind but not stimulate growth so that they block the receptors. Or they might do neither. In any case, I don't think the oil contains the isoflavones. See http://extension.agron.iastate.edu/soybean/uses_isoflavones.htm which has a link to the USDA-Iowa State data base on amounts of isoflavones in foods. With the unknowns, you probably wouldn't want to load up on soy milk or tofu if you are hormone positive, but soy oil in salad dressing isn't likely to be a problem.

The dietary sugar feeding cancer thing is a myth:

http://www.mayoclinic.com/health/cancer-causes/CA00085/NSECTIONGROUP=2

http://www.uwhealth.org/news/cancermythbusting/13581

http://www.wingscancerfoundation.org/index.cfm?section=3&page=115

Thanks to Denali on the TCH thread for the sugar references.

Rachel, I haven't been posting here much lately. I feel rather out of step with the group because everyone is talking about still being tired and other remainders of radiation and I'm feeling fine. I do have one issue in my blood work in that my creatinine has stayed high at about the level at the end of chemo. I think I'm going to quit the bisphosphonate study because the Clodronate that I'm taking is likely contributing to the problem. At stage I, I won't get that much benefit from taking Clodronate so it isn't worth risking (more?) kidney damage by continuing.

But my chemo anemia is finally gone - my red blood cells and hemoglobin are back up to normal. I do notice that my radiation breast is still slightly pink - maybe extra blood flow is the cause of the heat that some are noticing there. And the nipple on that breast is still a bit larger.

I saw your post the other day about making baby food and then tossing it because your son didn't take to it. Babies often take a few times to warm up to a new food or change in tast so you may have given up a bit too soon. But also, since he is around a year, steaming or roasting veggies cut into finger size pieces might have more success.  By that age, our granddaughter had lost interest in food that she couldn't feed herself.

Rachel, Clodronate is a pill. Zometa and Clodronate both have "abnormal kidney function or failure" on the "Rare, But Serious" section of their side effects lists. I may have had more risk of that then you because I was already having excessive creatinine levels toward the end of chemo. I expect that they will monitor your creatinine with periodic blood tests while you are on Zometa. Even if Zometa didn't have possible kdiney issues, I don't think my onc would prescribe it for me outside the study. I'm not on hormone therapy and I don't have other risk factors for needing it for bone density so I don't need it for that and I don't think she would do it off label for preventing return of the cancer. In any case, my likelihood of recurrence is so low, that I'm not interested in using these outside the study. I participated more because I benefited from the brave women who enrolled in the Herceptin studies so if there was a study that might help others in the future I felt I should participate. I did that and I guess I'll be part of the statistics saying that some people quit Clodronate because of kidney issues.

One of the other drugs in the study, ibandronate, doesn't have kidney issues on its side effects list. Perhaps the study will find that one is the best.

It sounds like the baby food maker that my husband was wondering whether we should buy for our son and DIL. There was a review of it in our newspaper. I told him that it looked like a waste of money. My little mini-Cuisinart did a great job of pureeing fruit and veggies into baby food and it costs around $30. For storage, I froze it in ice cube trays and then popped the food cubes into a ziplock freezer bag. An ice cube is about an ounce so its a pretty good portion size to work with. And the puree stage doesn't last that long. For our granddaughter, I didn't need to do that many batches and then she was on to diced or matchstick cut food. 

I think it did need some water to do its job properly. The food processor will act that way too if one tries to chop something that is too dry. 

At first the baby will just spit out and play with the food bits but after a while they get the hang of eating them. We didn't worry much about chocking. Of course, we did make sure to be there watching her when she was eating just in case. She was never left unattended with solid food until she had gotten the hang of it. Another thing is to be careful about the shape and size you cut food to. What you want to avoid is disks and balls that can block the airway. So foods like grapes need to be sliced so they are half circles until the child is good at eating them (and we didn't do grapes much until she got a bit older because at first they need to be peeled which is a pain). Something like a hot dog or carrot should be sliced lengthwise too so it isn't in disks. 

When you make something soft enough for yourself, you could give him some diced pieces on his tray to work on while you eat. The important thing is that the food needs to be soft enough for gumming and to have tough bits like peels removed. And I don't think you have done any harm. Some babies just get ready for the transtion a bit later and at one year a lot of the nutrition is still coming from breast milk or formula. 

The wholesomebabyfood.com site is very helpful.

I did save a friend once with the Heimlich manuever. We were with a group of couples at a restaurant and were sitting on the side of a table against the wall when I noticed that he was choking on something. His wife was on the other side of him talking to the person on her other side. When something really blocks the airway, choking can be totally silent so she wasn't aware and I was the only person who noticed it. Anyway, being in the middle of a table on the wall side, only his wife or I could easily help him and she didn't know he needed help. We got up and I did the Heimlich. It took a couple of tries because I'm short so it was a bit of an effort to push high enough. It's like magic when the piece of food shoots out. So that's why I did always keep a careful eye on our granddaughter when she was learning to eat non-pureed food.

Now that you are coming out of radiation fog, you might also start teaching him baby sign if you haven't been doing that earlier. It was very helpful for our granddaughter to be able to communicate before she had the ability to say a lot of words. Our granddaughter enjoyed the baby signs DVDs. That might help with something you don't feel guilty about having him watch when you need a break. 

And at one, spending some time entertaining himself is a chance to grow too.

Samantha, good luck and have fun at summer school. I work in an autistic support classroom and could never sign up for the ESY program(extended school year). My son has adhd, so he has gone to summer school every year to keep up routine. This year the kids get a break too. The only thing we are doing this summer is continuing w/ speech classes for the children.

Rachel, just keep introducing new foods, he will eventually like the feel of something in his mouth. My 4 yr old and 8yr old still do not like the feel of certain types of meats, but they love most fruits and veggies which is good.

we had a quiet day today too. Went to church, had dinner at my MIL's and then came home and now I am watching army wives.

I did only the basics this w/e trying to rest my left side, to alleviate pain in my radiated breast. With not lifting anything over the w/e it feels better.

have a Great Monday. Only three more days.(2 are 1/2days) then SUMMER VACATION.