Dis Breast Cancer Survivors Part II -GAGWTA!

[sjaakie]

Wish I found this threat a few months ago.
My last chemo was just a week ago.

GAGWTA to you all.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Ann loved the pic with Avery...wow! He is the Jedi!!!

sjaakie

jackskellingtonsgirl-I'm glad your mom has been doing better. Sometimes it's hard to gage how much is too much. I hope she gets good reports from her drs.

Dawn-I'm so glad your Muga was good and you are doing well! You go gurl!!!

I'm around! Doing great now that I'm back on track with my meds. The taper is ok. Poor hubby got a nasty case of poison ivy and guess what he started on today...Prednisone! He'll do 3 days at 40 and do 3 day tapers from there. Yes, we are soul mates, lol. I feel like summer vacation has just started around here since we went straight to WDW on the last day of school and have been home less than two weeks. The weather is gorgeous and I'm being a bad gurl lounging in the sun in spite of my drs. It feels so good! We don't have big plans for the 4th...def. a cookout that night and we have sparklers, but probably not going to see fireworks. We'll figure something out. On Monday though we are going to Philadelphia on our Founding Fathers Tour! This all started when watching the travel channel and seeing Philly cheese steaks. We have never had a real one. (Linda was on the thread about this, it was called, Did you ever drive far for a certain food? or something like that.) Anyway, (slipping in a little trip report here) later that first day in Epcot my oldest dd, to my surprise, said let's go see American Adventure! We made it in time to see Voices of Liberty and they brought out a CM who had just become a US citizen that morning! That just gives me goosebumps. As we watched the show, the part with the Declaration of Independence always gets me...my favorite line: Life, Liberty and the Pursuit of Happiness!!! I love it! I'm all about this! Life! Yes! Liberty from all that tries to keep me in bondage, particularly the dangling phantom menace of cancer! Yes! The pursuit of happiness! Yes! I did not go through all this to die having lived an unhappy life. So...I concocted a plan walking back through World Showcase. A summer assignment. We need to learn more about the Declaration of Independence. I know those who are not born US citizens take a test...they probably know more about it that I do! So we've been doing some reading... fascinating, and Monday we are going to Philadelphia to see the historic area...and get a cheese steak from Pat's King of Steaks since his is the original and this is the Founding Fathers Tour! Yes, my kids think I'm nuts, but they're having fun with it too. Just me pursuing some summer happiness!

 

[jackskellingtonsgirl]

Wish I found this threat a few months ago.
My last chemo was just a week ago.

GAGWTA to you all.

Glad you found us now! Welcome!

Havinfun - Glad to see you made your way over from the trip reports board! Welcome to you!

Laura - I am glad your meds are working well! I hope there won't be any more glitches with the insurance!
Sounds like you have some fun things planned! Enjoy your weekend!

 

[snappy]

Laura, what an uplifting post. You are one terrific mom. I love thinking positive and you are the queen of this.

I loved hearing about your experience in American Adventure.

Wow, two new posters yesterday, sjaakie and havinfun!! Glad you found us.

Welcome!!!

Come back and stay a while, tell us your story.

Dawn, I too am glad you numbers allowed your to resume chemo. I am glad your first one was shorter than you expected. I hope you wake this morning nausea free.

jackskellingtonsgirl, I know how worried you are about your mom. I am sorry to hear she is so fatigued and that she is not pacing herself. She had very major surgery and needs to heal before she can really return to routine activities. Hard to hear, but especially as we get older. . . I am really learning how to slow down at age 54. Try explainin' that to teens and a 12 year old. ARRGGHH!!!!

 

[jackskellingtonsgirl]

jackskellingtonsgirl, I know how worried you are about your mom. I am sorry to hear she is so fatigued and that she is not pacing herself. She had very major surgery and needs to heal before she can really return to routine activities. Hard to hear, but especially as we get older. . . I am really learning how to slow down at age 54. Try explainin' that to teens and a 12 year old. ARRGGHH!!!!

My mom is 60, my sister is 16, so she can relate to trying to keep up! Mom is overweight - she doesn't exercise or watch her diet so her recovery was bound to be slower. I'm not sure what time her appointment was today - I will call her tonight and see if she has any new info.

 

[snappy]

I am probably responding to this too late, but I thought I would answer your question. The IV could have been in the vein. Sometimes it get moved when you move and then the hand or arm needs to be repositoned. Sometimes it moves out of the vein. So I wouldn't think it was the nurse's fault. I am just glad that they caught your allergic reation quickly.

If you need the port put in, it's not that bad. At first mine felt really weird, but now I don't even notice it. I did have 4 rounds of AC followed by 12 weekly rounds of Taxol and Herceptin, then 13 rounds every 3 weeks of Herceptin. So that's why I was greatful for my port. If you only need chemo for the AC, then you are done, I can understand why you don't want a port.

Good luck with your treatment.

Thanks for weighing on the Dawn's IV issue. It always helps to hear from someone who has been there.

I noticed the link to your trip report and read the thread. It sounds like you have a wonderful family and will have a spectacular trip.

We are glad you joined us here and celebrate your survivorship with you.

Laurie

 

[snappy]

I made a humonguous pot of chicken and andouille sausage gumbo
to tide my little brood over while I am doing the Texas thing, even though DH commanded me not to worry about laying in supplies and meals.

I know they are not helpless. . . I just can't help myself. . . the motherhood thing kicks in. Does this mothering thing ever cease and desist?????

 

[DeeCeeSW]

I made a humonguous pot of chicken and andouille sausage gumbe to tide my little brood over while I am doing the Texas thing, even though DH commanded me not to worry about laying in supplies and meals.

I know they are not helpless. . . I just can't help myself. . . the motherhood thing kicks in. Does this mothering thing every cease and desist?????

Where's mine? Sounds gooooood.

 

[escape]

Hi Ladies!

This is my first visit to this thread and I just have to tell you all how I admire you for your courage and strength and your graciousness for helping others in their time of need. You are my new heroes!

One of husband's co-workers is going through treatment now for breast cancer. She's going to have 12 rounds of chemo at 3 weeks apart. She had her first round last week and apparently, it didn't go so well. She really got sick and from what I understand, this is somewhat normal. (???)

I need your help with something. I would love to send her some type of package of goodies to help her pass the time or at the very least, let her know that we're thinking of her and wish her well. I need some help coming up with items to put in a gift basket. Magazines? Lotions? I'm at a loss for ideas. What helped you ladies, if anything?

Any ideas? Any help would be greatly appreciated.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

escape- That's really sweet of you! I'm not sure how well you know her likes and dislikes, but I would go for comfort stuff like soft socks, chocolates/ candies ...any bath/lotion type stuff you need to be careful not to get anything with too much fragrance. In the hospital, I find that junky magazines are better for me than novels, lol! No thinking involved! As far as how sick chemo can make her, everyone is different, and they have lots of good anti-nausea meds to help. I was one who got pretty sick on chemo, but I lived to tell!

Laurie- I don't know how good of a mom I am... I tell my kids all the time they will have lots to tell their therapists when they're grown!
Your humongous pot of chicken and andouille sausage gumbo sounds yummy! Can you share the recipe?

 

[snappy]

~~~***GAGWTA sistas***~~~

escape- That's really sweet of you! I'm not sure how well you know her likes and dislikes, but I would go for comfort stuff like soft socks, chocolates/ candies ...any bath/lotion type stuff you need to be careful not to get anything with too much fragrance. In the hospital, I find that junky magazines are better for me than novels, lol! No thinking involved! As far as how sick chemo can make her, everyone is different, and they have lots of good anti-nausea meds to help. I was one who got pretty sick on chemo, but I lived to tell!

Laurie- I don't know how good of a mom I am... I tell my kids all the time they will have lots to tell their therapists when they're grown!
Your humongous pot of chicken and andouille sausage gumbo sounds yummy! Can you share the recipe?

When I do my etoufee I make a real roux with oil and flour. For this gumbo, I used a product from Ville Platt, Louisiana called dry roux, basically flour with seasonings ( it looks like a brown powder in a clear jar). It is already "scorched" so you get that roux flavor. I like it because it has no sodium and you make the roux with no oil.

I added about 3 pounds of lean andouille sausage. I get this at various ploaces but try to get it as lean and as low in sodium as possible. Again, to save the fat I used boneless skinless chicken breasts ( about 6 or 7) instead of boneless skinless thighs (which is also good). I chopped up a huge bell pepper, a huge vidalia onion. Usually I throw in chopped celery, fresh italian parsley and garlic too.

The jar of roux goes in to 4 1/2 quarts boiling water (big ole pot) and it has to be stirred contantly until dissolved. Then everything else is chopped and added at once (I really like that part). The whole deal is simmer for at least 2 hours. I serve over brown rice.

You are not going to wast away on this but it is not loaded with fat except for the sausage. But you really need the sausage.

I find it comes out more liquidy than my regular roux but it is good. My sister told me about the dry roux.

I used double the proportion of the roux mix as I like it really dark.

 

[jackskellingtonsgirl]

GAGWTA!

I spoke to Mom yesterday. She saw her surgeon, her incisions are all healing well, she goed back in 3 months. She is still tired. She said she felt really good on Tuesday, but yesterday she was tired again. She said she didn't over-do on Tuesday.

She had been telling me all along that her oncologist visit was July 18. It isn't. It's July 9. Not sure if that is a good thing or a bad thing. I guess maybe they will get moving on her treatment sooner? We'll see.

Now, this is kind of weird. That genetic testing they were doing on the tumor to determine risk of recurrence? She spoke to someone at the genetics lab who said they have a program for low-income women to have the testing done, covered at 100%. If you recall, they said if her insurance wouldn't pay they would not release her results. Her insurance won't pay because her cancer is node positive. They would cover the test if it was node negative, which sort of comes back to the link Linda posted about the test being for node negative tumors. I am assuming the test is experimental in node positive. Soooo...

Mom hasn't "decided" if she will fill out the application for aid so she can have her results. She is convinced that they are trying to scam her, and she will have to pay for the test.
The other prong to this is that the lab rep she spoke to told her IF her tumor shows low risk of recurrence that she might NOT have to have chemo. Um, with 6 positive nodes how can she NOT do chemo? If her recurrence risk is high then she HAS to have chemo, if her risk is in the middle then she will have to talk with the oncologist to decide if chemo is indicated. I wonder if the lab KNOWS she had 6 positive nodes? It all seems rather odd.

Thoughts, anyone?

 

[snappy]

I think the lab rep is "selling the test." I agree with you that there is NO chance she can avoid chemo. The test may very well have merit for future monitoring and followup and possible other treatment, but I do NOT believe the results of that test will have an impact on whether or not she should have chemo.

With everything else I am sorry she also has this dilemna to deal with.

 

[laurabelle]

When I do my etoufee I make a real roux with oil and flour. For this gumbo, I used a product from Ville Platt, Louisiana called dry roux, basically flour with seasonings ( it looks like a brown powder in a clear jar). It is already "scorched" so you get that roux flavor. I like it because it has no sodium and you make the roux with no oil.

I added about 3 pounds of lean andouille sausage. I get this at various ploaces but try to get it as lean and as low in sodium as possible. Again, to save the fat I used boneless skinless chicken breasts ( about 6 or 7) instead of boneless skinless thighs (which is also good). I chopped up a huge bell pepper, a huge vidalia onion. Usually I throw in chopped celery, fresh italian parsley and garlic too.

The jar of roux goes in to 4 1/2 quarts boiling water (big ole pot) and it has to be stirred contantly until dissolved. Then everything else is chopped and added at once (I really like that part). The whole deal is simmer for at least 2 hours. I serve over brown rice.

You are not going to wast away on this but it is not loaded with fat except for the sausage. But you really need the sausage.

I find it comes out more liquidy than my regular roux but it is good. My sister told me about the dry roux.

I used double the proportion of the roux mix as I like it really dark.

It sounds sinful! yum! I've never heard of dry roux...I wonder if it's a local thing?

GAGWTA!

I spoke to Mom yesterday. She saw her surgeon, her incisions are all healing well, she goed back in 3 months. She is still tired. She said she felt really good on Tuesday, but yesterday she was tired again. She said she didn't over-do on Tuesday.

She had been telling me all along that her oncologist visit was July 18. It isn't. It's July 9. Not sure if that is a good thing or a bad thing. I guess maybe they will get moving on her treatment sooner? We'll see.

Now, this is kind of weird. That genetic testing they were doing on the tumor to determine risk of recurrence? She spoke to someone at the genetics lab who said they have a program for low-income women to have the testing done, covered at 100%. If you recall, they said if her insurance wouldn't pay they would not release her results. Her insurance won't pay because her cancer is node positive. They would cover the test if it was node negative, which sort of comes back to the link Linda posted about the test being for node negative tumors. I am assuming the test is experimental in node positive. Soooo...

Mom hasn't "decided" if she will fill out the application for aid so she can have her results. She is convinced that they are trying to scam her, and she will have to pay for the test.
The other prong to this is that the lab rep she spoke to told her IF her tumor shows low risk of recurrence that she might NOT have to have chemo. Um, with 6 positive nodes how can she NOT do chemo? If her recurrence risk is high then she HAS to have chemo, if her risk is in the middle then she will have to talk with the oncologist to decide if chemo is indicated. I wonder if the lab KNOWS she had 6 positive nodes? It all seems rather odd.

Thoughts, anyone?

I can tell you that a lab rep is not an onc (neither am I ) but there is no doubt with 6+ nodes that the current recommendation is chemo. I thought part of the test was to help decide what chemo to have? Honestly, since she is meeting with her onc so soon, I think she should just talk it over with him and see what he recommends. I always try to let go of the stuff that I can and move on. Sounds like the test fits in this category...

 

[snappy]

It sounds sinful! yum! I've never heard of dry roux...I wonder if it's a local thing?

You are probably right. I have also seen "roux in a jar" that is not dry, looked disgusting to me.

This product is more about trying to healthy up roux which is mostly about the seasonings (celery, bell pepper, onion, garlic, green onions and parsley) anyway. The flour/oil stuff just thickens it and it you cook anything long enough it seems to me the water evaporates and makes it thicker.

I am not a purist by the way, I don't do my real roux in an iron skillet like most Cajuns would. I have a newish stovetop and just can't bring myself to use a iron pot.

I have used a microwave roux from a cookbook for a long time and as long as you get it brown enough (tricky in a microwave. . . you can undercook or overcook it) to me it tastes good.

Others swear by their irom skillet. Darn things are too heavy anyway for this delicate souther flower.

 

[Pea-n-Me]

jsg, I agree with the others, Mom needs chemo, regardless of what the test says. No point in doing it, which is probably why insurance won't cover it (though I'm sure they gain knowledge the more data on these things they get, which helps for future women faced with BC, just like we've all been helped by the knowledge gained by those who've traveled this road before us).

I'm sure the oncologist could explain it best. My suggestion would be to put in a call to the oncologist yourself, with Mom's permission of course (HIPPA), and have him go over things with YOU. Just explain that your Mom is a "poor historian" and you're helping to guide her so it would be best if he keeps you in the loop. Tell him you just want to touch base. It could be a very short phone conversation this time, but a longer one after he's actually met with your Mom - maybe even a conference call while she's there? Thanks for being a great daughter, you are very much on top of things.

welcome escape and all the other new ladies who've stopped by. Would love to hear your stories. Glad you found us.

Laurie, that sounds wonderful! DH would love a big bowl, I'm sure. Ever since we went to POFQ he's been into Southern style food, LOL. (I have that wonderful cookbook you sent me, I should try out more recipes but I'm not a big cook; we tend to grill a lot.)

Dawn, glad things went fairly well for you this time. Hang in there, sista.

Hope you all have a wonderful 4th. We've got about 24 hrs of celebrations around here - bonfires tonight, parade tomorrow and fireworks tomorrow night. Hopefully I'll be able to get some good photos (I don't know ).

GAGWTA!

 

[lookingforward]

Hi everyone. I am off today and tomorrow so I definately wanted to check in. I have been monitoring the thread but just so depressed that I had no energy to write. It has been the most difficult time of my life...I miss my mom so much.

I finished radiation last Friday. My radiation oncologist told me that I could skip the five boost treatments and I was finished. It was so sad, because my mom had been with me every step of the way and would have been ecstatic about it being finished. I cried and my doctor cried and it was a really tough moment for me. Anyway... My mom and I had planned on celebrating by going to the Hard Rock casino, and of course she was not there to do it. So my dad (GOD BLESS HIM) insisted on taking me. So we went to the Hard Rock in Hollywood, FL and we had lunch and then he and I played blackjack for a few hours. It was hard because that was my mom's favorite game but we had a great time together. It was so bittersweet. He was a doll to do it and it was a great day, thanks to him.

I really contimplated not going on my California trip the end of July because I am just so sad. But after talking wiht my Dad and husband I am going to do it. First, its time alone with my middle son who is such an amazing teenager. He gets good grades, is so respectful and talented...and its important to make memories with him, no matter how sad I feel. Life is so short...and you never know...so it will mean a lot to him to do it. We are going to live it up! I can't wait. Its definately his turn for some special experiences. We took our oldest alone on a cruise and I do disney with my baby.

jackskellingtonsgirl: I wanted to have the onco testing done even though I was node positive (2) but they would not do it and did not even offer me the chance to pay for it (I would have). I am of the school that I want as much info as possible. Even though chemo was a definate for me with the two nodes I would have loved to get the info on the dynamics of my tumor. I know now that they are studying the onco testing for node positive patients as a way of customizing chemo...so if your mom can get the $3500 test FREE than it might be worth filling out the forms! To me..information is power.

I went to my oncologist and got my tomoxifen prescription. I begin the drug on Monday But I am happy I can take it. Hopefully it won't be too difficult.

Happy 4th of July. My dad is bringing over 1.5 to 2 pound lobsters for our feast tomorrow. It will be a good day to spend together.

GAGWTA!

 

[DeeCeeSW]

I can tell you that a lab rep is not an onc (neither am I ) but there is no doubt with 6+ nodes that the current recommendation is chemo. I thought part of the test was to help decide what chemo to have? Honestly, since she is meeting with her onc so soon, I think she should just talk it over with him and see what he recommends. I always try to let go of the stuff that I can and move on. Sounds like the test fits in this category...

Yes, I agree, chemo is a given in this situation, as is radiation. I was told anything about 4 nodes will warrant it.

EDITED TO CLARIFY: Any node involvement means chemo, 4 or above node involvemnt warrants radiation.

 

[DeeCeeSW]

Thinking of you a lot, Maureen. Sorry that this has been a difficult time, but I'm happy to hear that radiation is over and that you and your Dad are spending time together, supporting each other and keeping traditions (and making new ones). I hope you enjoy your trip to California, your son sounds like a gem.

Have a wonderful 4th of July (that goes for everyone)!

x.o
Dawn

 

[Pea-n-Me]

Yes, I agree, chemo is a given in this situation, as is radiation. I was told anything about 4 nodes will warrant it.

4 nodes? My, how things have changed. By those standards, I wouldn't have needed the 8 rounds of chemo I got.