Dis Breast Cancer Survivors Part II -GAGWTA!

Status
Not open for further replies.
Mom had her last radiation on Thursday, so she is finished with treatments!

Yay! Hope her other arm is feeling better soon.

I'm glad she's going to CH. She can't make an appt without a referral? :mad: ...I think there's no excuse to delay a referral (I mean, that should be among the day's highest priorities), but most docs wouldn't treat something beyond their scope of practice/range of specialty themselves.

The only problems I have with the doc is that she's dragged her feet, not believing there was a more serious problem for a year and now she won't make the referral. Now Katie's blood is all messed up, she's sick all the time and her hair is falling out and she's only wanting to refer them to the place she chooses? That's a load of bull. I'm praying that they got in with children's yesterday. Not sure why children's has to have the referral from the primary doctor? Maybe it is insurance. Sometimes red tape makes me so mad. And I know my cousin doesn't have the money to pay without help of insurance. She's been through a messy divorce and has 3 kids...one in college in California.

I know getting the referral can get dragged out (friends have told me this) especially if you have to wait an inordinate time to see the PCPO (and this happens too).
However, if there is suspicion of somehting as dangerous as leukemia, I would think , like Linda, the doc would "take the time to do the referral."

I don't think they'll have any trouble getting in with the hemotologist once they get the referral. It's just infuriating. Now Katie is feeling really sick again. She has another terrible cold. Then she usually ends up with a terrible infection. Now we know it's probably because her blood count is all screwed up. She had a terrible staph infection in a cut on her finger a few months ago. They had a terrible time clearing it up. My cousin now suspects that this was beginning then. I wish I could do some research, but not having any of her reports I don't have much to go on yet.

I loved the Godwink. Pretty cool. Now I'm wanting cake.:rolleyes:

I either had food poisoning or a virus last night. I was sick all night, but I'm feeling much better today. Thank goodness. I've been sort of taking it easy today.
 
I had a double dose of boiled crawfish, last night DH and I went to Sammy's Grill for boiled crawfish and we also split a fried shrimp po-boy.

Those dang crawfish were so good, I picked up some to go today. They give them to you right out of the pot so they are still hot. I think they taste spicier when they're still hot and it is certainly easier to pinch the tails and suck the heads when they are hot.

They could not be better as the shells are thin this early. Even the claw meat comes out good.

Having the crawfish takes the sting out of not going to Mardi Gras. DD13 did go to with a friend and her family to a local parade last night and another tomorrow in Pass Christian (Mississippi).

I bought more plants and bulbs and dirt and pine straw. I got winded just getting everything out of my car.

I think it is nap time. Maybe it was the Abita beer that did it?

Your cousinhas been through heck and back, Merry. Please keep us updated.

Hope you feel better today.
 
GTAGWTA Ladies, Good Evening

just a quick post as ds is out here throwing up, so I already typed his college paper for him as he is insiting on going tomm. I need to limit my germ contact for sure right now.

Linda - I liked your cake story, you made me very hungry for cake too.

Also Linda and Ann - Hope you do o.k. in the storm that is suppose to be coming tomm

Elizabeth - I thought of you as my ds went to lifeguard class today for his cpr and aed, another girl there used to live in Dallas too as her mom worked on the same govt. project with dh. Well the swimming instructor calls them "The Dallas Duo!!":rotfl2:

I went to church today.. It was good to be there b ut it tired me out. I think everyone was shocked to see me for sure. 2 people even brought meals for the ds to take home and then someone cme over later too. We are swimming in food and I dont know what to do with it with one ds sick and dh have dinner meeting for the next 3 days. I guess I will freeze some of the stuff.

Hope to talk tomm.
 
Definitely freeze some of it. It may come in handy later. You could even divide it up into single servings if you'd like.

Hope your DS doesn't have what I had. My DH had it last night and is fine today, so at least it seems to be short-lived.

We've been discussing phones. We're switching our home phone to voice-over IP soon. We already have it and it works great. Now we just have to work on switching our phone number to the new line and close the old one. We also need a few more cordless extensions to have it configured the way we want.

GAGWTA!
 

GTAGWTA Ladies. Good Morning!!

Calgon take me away!!! Well ds 1 is still throwing up and insisting on going to college tonight?? I am trying to keep my distance. Had ds2 go get some gingerale at the store. He also helped fix my running toilet before he left. Never a dull moment. Today I am calling the dietician again to clarify some stuff about the diet allowables and the endo to ask about the one pill I have or maybe 2 about red dye in them, which is not supposedly allowable, the rad. onc. said, if you really need them then take them etc. The endo wanted me to phase out the one med slowly anyway, so I will find out about that. Ds is sleeping so I am trying to type quietly and stay about 3 feet away from him. That is all I need before I go into the hosp.

If anyone here had chemo, what food did not tast metallic. The rad I am getting has the chemo effect plus flu like sympton, oh how fun will that be? I will have dh leave the food in something disposable like 3 feet away etc. My head spins thinking of this. Thank the good Lord my dh haa a good background in radiation from his job etc. He understands alot of this stuff, so that is a blessing.
 
lmp, where you will pick up your son's germs is in the bathroom. If possible, have him use one and you use another. Also have someone clean it really well and then spray with Lysol before you use it - especially faucet, toilet and door handles, and change towels, don't touch his clothes, etc, too. These GI bugs are very virulent and easy to pick up. (Your DS should be meticulously washing his hands to protect you from whatever he has.) I'd hate to see you sick with something like that on top of all your other physcial problems right now.

If anyone here had chemo, what food did not tast metallic. The rad I am getting has the chemo effect plus flu like sympton, oh how fun will that be? I will have dh leave the food in something disposable like 3 feet away etc.
I've never heard of a chemo effect from radiation. Do you have a link?

I had chemo. After the (red) infusion, there was a strange taste in your mouth and going to the bathroom you could see the chemo drug come out. :earseek: Food, to me, though, never tasted metallic. One thing you have to be careful about with chemo is eating your favorite foods as you can develop "negative associations" with them. It happened to me. But they tasted fine at the time. :rotfl: Not sure if this is what you mean.
 
Its some kind of radioactive isotope that is only given to thyroid cancer protocol patients. Its an ingestible pill and she told me (the rad. oncologist) ingested too. I think the shots I am getting are thyrogen to really up the TSH so the pill acts like chemo and uptakes into all the remaining thyroid tissue to kill the cancer cells if that is how I remember it correctly. I am glad my dh knows about this stuff. He says its a neat way to radiate!! Gheesh. Can you tell he has dealt with this before, but not medically, just scientifically. The pill is given after an anti nasuea drug is othat I will get the:
Flu Like symptoms
Metallic taste (I need to ask her for how long)
Very dry and hoarse throat (Have to bring sour lemon drops she said)

I did read someone else on the boards went through this and had all these symptoms too. I sent her a pm but havent heard back.
 
LMP, I'm not much help. Here's what a dear friend of mine said. She had the metalic taste in her mouth and she said old fashioned lemon drops were the only thing that helped her. Not lemonheads or any other lemon candy. They had to be the hard lemon drops, the kind that are kind of dusty looking on the outside. Know what I mean? They're sort of hard to find, but she said they were a life saver for her because everything else tasted weird....like she was sucking on spare change. Yuck.

Keep away from DS. You don't need his germs. It's bad enough to be sick in the best of circumstances.
 
Oh I remember the weird chemo tastes. Everything changed for me with regard to food. All I could eat was oranges, bananas and chips. It was weird.

Sorry I have been out of touch, my dad was brought back to the hosptial by ambulance early Sat morning. He was admitted and then released Sunday evening. He is doing better, but it was so horrible to get that call. I am exhausted...I was with him most of the weekend.

GAGWTA!

I am having my final (I HOPE) plastic surgery on Wednesday. They also found a lump on my radiated side which they claim is fine (radiation changes) but "lets biopsy it while we are there". I am a little nervous. Can't wait to be done.:hug:
 
Chemo taste for me was not so much about anything tasting metallic, but I just didn't like the way a lot of things tasted. Most things, actually, unless it was sweets/desserts. Except for speghetti with meat sauce, that's the only food that ever tasted good. Couldn't even touch a hamburger, or fries, etc. Everything eventually became normal again, but it took a good long while.

Maureen....:hug: sending lots of good thoughts to you for Wednesday!

LMP.....sounds like Calgon needs to take you away really soon! I hope you continue to avoid those germs.

I just got some new pictures of our puppy...he's 4 weeks old and about two pounds now - getting cuter every day! I can hardly wait until next month to pick him up!

:goodvibes GAGWTA!!! :goodvibes
 
Hi,

This is long, sorry.

It is so wierd that tonight I finally come to this thread for advice and you are talking about metalic taste in the mouth.

I will give you some background, hopefully you can help or lead me in the right direction. My DMIL has breast cancer. She was diagnosed in 2007 summer had a lumpectamy (sp) and lots of lymph nodes were affected. She was estrogin respecptive. Sorry for the spellings please bear with me.

But the metalic taste is horrible she cannot eat, cannot drink.

She is 65. Does anyone have any hints or things that helped you get through the metalic taste, oh and she is constantly nausues.


Thanks for you time and bless everyone of you going through this horrible disease, you are truly special woman.

Sharon
 
Welcome, Sharon. Glad you found us. I'm sorry to hear about your MIL.

I was going to ask if she had chemo originally. (I take it her cancer was invasive if she was node positive.) And besides the bone scans, has she had other scans, like CTs of the rest of her body?

Usually when you get chemo they have you on a fairly strict regimen of anti-emetics. Is she on any? If she is, is her medical team aware she's still feeling nauseas? Sometimes they may be able to adjust the meds.

This has got to be very hard on all of you. :hug:
 
Welcome, Sharon. Glad you found us. I'm sorry to hear about your MIL.

I was going to ask if she had chemo originally. (I take it her cancer was invasive if she was node positive.) And besides the bone scans, has she had other scans, like CTs of the rest of her body?

Usually when you get chemo they have you on a fairly strict regimen of anti-emetics. Is she on any? If she is, is her medical team aware she's still feeling nauseas? Sometimes they may be able to adjust the meds.

This has got to be very hard on all of you. :hug:

Thanks for the welcome, yes she has had CT scans, MRIs Pet scans, she gets alot of tests.

I really do not know what anti-emetics are, if it is a medication, she only takes oxicodine around the clock for pain, nothing else, her onocologist told her to stop taking the tamoxofin because it was not working.

Her docs do know she is nausues but they say after she has chemo it will be better, and that even though she has lost alot of weight, it will not really hurt her.
 
Hi Sharon, sorry about your MIL. There is a really great website that might be of help to you www.breastcancer.org There is a lot of information there in a very easy to understand format. Have you ever talked to the docs yourself, or just getting the information from MIL? From what you said, it does sound confusing that she didn't have chemo before, but each case is different and there must have been some reasoning behind it. I don't have any good ideas of what to do about the metalic taste as I didn't have that problem, but I'd say try milkshakes. I loved milkshakes while on chemo, they were sweet and creamy and just felt good going down.
 
:grouphug: ~~~***GAGWTA sistas***~~~:grouphug:

Sharon- I'm so sorry your mil is suffering. I had a really hard time with being nauseous on chemo, metallic tastes, funny smells...The anti-emetics are anti-nausea drugs. There are different ones, Zofran and Emend are two big ones, and often they are given with other drugs like ativan to help them work. Sometimes our bodies take over and it just doesn't work. Things that helped me: eat small meals several times a day, keeping something little in your stomach does help, sometimes you can only nibble on crackers and that's ok, but when she can eat go for comfort foods, things you would eat if you had a cold or flu, some of my fav.s mashed potatoes, Lorna Doone cookies...stay as hydrated as possible, suck on mints/candies, try to keep cooking smells to a minimum, use relaxation/meditation techniques, long soaks in the bathtub, relaxing music, basically every comfort measure you can think of. It may not completely take the sick feeling away, but it helps.:hug:

Maryann- See above post... I hope your son is feeling better!:hug:

Maureen- Keeping you and your dad in my thoughts and prayers...especially for Wed.:hug:

Cheryl- I've been dreaming of a dog ever since watching the Westminster dog show:cloud9: ...what breed is it?

Hubby was doing better, but it seems the inflammation around his heart is taking a while to resolve. He is home today. He didn't take any meds last night because he felt ok. Woke up at 1 a.m. in some pain. He did not wake me up. I woke up before 5 and he told me. I told him to call and they said they are not concerned, because it has not gotten worse, it's just taking a while to resolve. I hate to scold him, but gee, when will he get the message that you do not hang out and do nothing when it comes to your heart, you call...

I got bad news that one of my bc sistas from my old group found out that she has many. many, multiple mets...bones, lungs, liver...checked her brain on MRI yesterday and awaiting results. She was originally dxed a few years ago, then had a local recurrance about 18months ago. Elevated tumor markers showed up on routine bloodwork. She suffers from fibromyalgia so she was already in pain.
I hate cancer.
:grouphug:
 
:wave2: GTAGWTA Good Morning Ladies

Welcome Sharon- I hope the sistas here can give you lots of good advice and I hope things will go well for your MIL. I am taking oxy now, but try to keep it to 1 at night.

Laura - I hope your dh will be on the mend, slowly but surely.

Maureen - Prayers for your surgery on Wed.

Linda - I am still dreaming of cake, O.K. some nice church lady made us a huge apple pie.

I called the dietician yest. and she never called me back, will try again today, along with the endo. Hooray, ds is feeling better and even had chicken soup, crackers and cereal last night. He took 2 tylenol and is sleeping right now. His classses are mostly at night this semester so he can rest all day probably today. I start the yucky diet on thurs, I dont kow how this will work out. I need alot of encouragment. I am sure I will be going crazy after a while. Looking at what everyone else can have and I can have NONE of it, then when I can, I will have the chemo effect,, gheesh. Not to think about the 40 lbs. I already lost. I could loose some more, to get to weight from ds #3, that is another 50 lbs. and I wouldnt want to loose any more than that. So I guess its good I am a little on the pooh side to begin with.

So what kind of store did any one find the lemon drops in. We have stores like CVS, Walgreens, Rite Aid, grocery store, dollar store, Big Lots etc. I just dont have the energy to run to all these stores to look for it, If you call the sales associates arent that smart around here. They just generally dont want to bother to look up anything for anyone.

Wishing you all a great day, its sunny here, but really cold.
 
I don't have any direct experience with this, but I do have a cookbook with both recipes and tips, it is called Eating well through cancer and was written by a local recipe author after her dad went through treatment. It was written along with a local oncologist.

Some tips for changes in taste:

Cancer and its treatments can cause changes in your sense of taste and smell. Try foods or beverages that are different from ones your usually eat. Keep your mouth clean by rinsing and brushing which in turn may improve the taste of foods.

Season foods with tart flavors such as lemon wedges, lemonade, citrus fruits, vinegar, and pickled foods. (if you have a sore mouth or sore throat, do not use this tip.)

Tart candies, peppermint or lemon drops may reduce the sensations of bitter or sour taste. Try choosing sugarless kinds. Try drinking lemonade.

If you experience the metallic taste in meat, try marinating meat in a reduced sodium soy sauce or fat free Italian dressing to intensify the flavor. If red meat doesn't work, try eating chicken, seafood, or beans for protein.
Add strongly flavored juices or relishes.

Add extra seasonings to give the food more flavor such as onion, garlic, chili powder, basil, oregano, rosemary, tarragon, barbecue sauce, mustard, ketchup, or mint. Add a little at a time to see if you can perk up those taste buds.

Try eating foods that don't have strong odors.

Eat foods at room temperature. This can decrease the food tastes and smells.

Increase the sugar in foods to increase their pleasant tastes and decease salty, bitter, or acid tastes.

Rinse your mouth with tea, ginger ale, salted water, or water with baking soda before eating to help clear your taste buds.

Fresh veggies may be more appealing than canned or frozen ones.

Use plastic utensils if you are bothered by a bitter and metallic taste.

Maybe foods that you did not enjoy in the past will be palate pleasing now. This is a great time to try new foods.

Sucking on a thin slice of dill pickle, prior to meals, will sometimes stimulate your tast buds.

Hope this is helpful.

LMP, I will go look for the lemon drops.

Laura, I am sorry your DH is still having issue. I know what you mean about him being more serious about heart issues. I laid the law down with DH several years ago when he was having chest pain and shortness of breathe. It healped that the cardiologist we found is such a wonderful guy and we both like him. It also helped (and got DH's attention) when the doc prescribed nitro pills to carry around with him. DH's father who had heart rouble staring at age 40 and died with a massive heart attachk at age 54, and DH distinctly remembers he carried his nitro with him in an attachement to his key chain (DH found a similar model at WalMart).

We have made at least one emergency trip to the doctor when DH had the chest pains again. Turned out it was more related to exercise but I don't think he takes this stuff lightly anymore.



Laurie
 
Thanks for the welcome, yes she has had CT scans, MRIs Pet scans, she gets alot of tests.

An no it was not really invasive the tumor was only about 1mm. very small, they thought stage 1.

I really do not know what anti-emetics are, if it is a medication, she only takes oxicodine around the clock for pain, nothing else, her onocologist told her to stop taking the tamoxofin because it was not working.

Her docs do know she is nausues but they say after she has chemo it will be better, and that even though she has lost alot of weight, it will not really hurt her.

I don't know it just seems weird and complicated that she did not receive chemo a long time ago, I also have a friend 36 who just had a double mastectomy no lymph nodes affected and is getting chemo as a precaution.
I'm sorry. I'm a nurse and sometimes I forget I use the techical jargon. Yes, anti-emetics are anti-nausea drugs (thanks, Laura). They're pretty standard when getting chemo as it does make you feel unwell. I'd bet the oxycodone is playing a part, also, as it has a codeine derivative in it which can also make you nauseas. A discussion with her medical team about it may help. They may be able to give her something to take for the nausea, and/or try something else for pain. When I received chemo I had a whole host of anti-emetics I had to take on schedule to keep the nausea at bay and I didn't feel great (I had a constant, nagging feeling of "agita" and extreme fatigue), but I never really felt nauseas.

Everyone is different. I didn't have metallic tastes (except for the day of chemo administration), but for the agita I tried lots of different things. One survivor friend at work made me a basket with "gingery" things, which had helped her, and chai tea, etc. I normally like ginger (I'm a huge lover of ginger ale) but they didn't sit well, and I had the tea a few times, but that didn't really sit well, either. Actually, nothing really sat well come to think of it. :sick: I was trying hard to "make the calories count" by eating nutritious food, like the books said, but I think one of my favorite things to eat then was potato chips. Those always tasted good, LOL. (Amazingly, I still like them.) So try different things and see what works.

I"m glad she's had other scans. Sometimes if cancer's spread to one place, it's spread to others, too. If it's contained to the bones, that's good, as that usually makes it "treatable" (think of Elizabeth Edwards). There's this whole thing about "curable" and "treatable". Usually, cancer that's confined to the breast is considered "curable", which is why they're often pretty aggressive about initial treatment. However, things are changing with increased knowledge over the last few years about how they're treating, trying to predict who needs chemo (and who they think can go without), etc. They really take a close look at the circumstances of each individual case because no two cases are exactly alike.

To clarify, having nodes positive means there had to be a component of invasive cancer as it "spread" locally, ie it left the point of origination and "spread" to the nearby lymph nodes. (This was the case for me, and others of us here, as well. :worried: It's sometimes called a local metastasis.) Unfortunately, spreading to the lymph nodes means the cancer cells were in the lymph channels - which are all over the body. This is what chemo is actually designed to treat - those "new" distant cells which may have gone elsewhere to grow later on; radiation is designed to clean up any cells in the breast and armpit/axillary area after cancer cells have been removed via surgery. (They can tell when cancer has spread from one place to another as they will find cells from the original place at the distant place, for instance, they might find breast cells in a liver tumor, etc.) *I should also say that this applies to breast cancer, there are other types of cancer that chemo is not recommended even if nodes are positive, etc, as those cells may be found to be extremely slow growing or such, but I'm mainly talking about breast cancer here.

It used to be that, with invasive cancer (cancer that's spread out of it's point of origination, which one can tell from biopsy - either it's encapsulated [non-invasive] or there's evidence that even a little bit of it is not encapsulated, ie there are cells that have gone beyond the point of origination [invasive]), chemo was almost always recommended. But as I said before, some of that's now changing - though my understanding of it is that this usually applies only to node negative cases. I would certainly wonder why with numerous positive lymph nodes chemo was not recommended (maybe it was, but MIL didn't want it; or maybe they chose to treat it just with the tamoxifin since the tumor was small, who knows). The thing about it is, that this can happen even if you do get chemo, and/or even if the tumor is small and the nodes are negative, which is why this disease is sometimes referred to as "The Beast"; it's never predictable with absolute certainty and can come back even years down the road in either the breast and/or distant organs.

You'll see in the good link that Cheryl provided, that there are some pieces of information about each case that are "predictors" of outcome when decisions are being made about treatment. Those include size of tumor and +/- metastasis (Stage 1-4), lymph node status (positive or negative), and level of aggressiveness of the cancer, ie how different the cancer cells look from normal cells (Grade on a scale of 1-3, 3 being the highest grade, or most aggressive). They also look at whether the tumor was hormone related, or not, and other genetic factors such as Her2Neu status. Taking that information they look at how people who've had similar things did, with what type of treatment. They've got information now that spans several decades of modern treatment so they're pretty certain about what works and what doesn't. The end result is that they look to see who's died of things other than breast cancer and for those cases, they were considered cured. Fortunately, the cure rate is on the rise in the past decade or so as understanding of the disease, or diseases, really, has evolved.

Cancer that's metastasized, or spread to distant organs (bone included), is sometimes "treatable", but unfortunatley, not curable. :guilty: If one develops a metastasis (which I think we all worry about), the hope is that it is treatable. Some cases of metastasis spread unbelievably fast, like our own Beth's/MinnieM3 did. Those are the people who you hear of losing their battle in a very short period of time. :sad1: (And why there's controversy about routine testing, but that's a whole other post.) Other cases of mets move very slowly and are hopefully confined to a small area(s) and treatable over the long term.

OK, I'm officially rambling, but hopefully it's helped explain things a little bit. It's a really hard subject to discuss, as none of us want to even think about this possibility. But around here we kind of feel that knowledge is power, so we sometimes tackle the tough subjects anyway. :sick: In thinking about this as I'm writing, Sharon, I think if it were my own mother (I know it's tough when it's MIL, but maybe you can share this with your DH), I would INSIST she get another opinion in a major cancer center with a top oncologist who specializes in treatment of metastatic breast cancer. She's a young woman with lots of years ahead of her and I'd want to be absolutely certain we were giving her the best treatment known at this point. HTH. :hug:
 
Status
Not open for further replies.




New Posts









Receive up to $1,000 in Onboard Credit and a Gift Basket!
That’s right — when you book your Disney Cruise with Dreams Unlimited Travel, you’ll receive incredible shipboard credits to spend during your vacation!
CLICK HERE











DIS Facebook DIS youtube DIS Instagram DIS Pinterest DIS Tiktok DIS Twitter DIS Bluesky

Back
Top Bottom