Dis Breast Cancer Survivors Part II -GAGWTA!

[Iluvthemouse]

Hi everyone.

Maureen--I will be thinking of you and your dad today.

Laura-great pix. We are about 1.5 hours from PHL and have never been other than the zoo. I gotta take DD soon.

Snappy--you got the prayers.


Tomorrow is my US guided biopsy-9am. I am scared to death. Part of me wants to run far far away. I just feel like I cant bring myself to do it. I keep envisioning myself walking in to the office and telling the dr I just cant go through with it. I went to Walmart this morning and got extra strength, RAPID RELEASE Tylenol capsules. I am not messing around.LOL A client came in the other day and said her aunt had one and it hurt like "holy heck". Thanx. I needed to hear that. I am such a whiney wimp but still very scared. This coming from the girl that had her DD with no pain meds (not by choice though, my labor was too fast) but in the end I got a baby. This time I get a cut in my **** with some steristrips. Not the same.

 

[snappy]

Hi everyone.

Maureen--I will be thinking of you and your dad today.

Laura-great pix. We are about 1.5 hours from PHL and have never been other than the zoo. I gotta take DD soon.

Snappy--you got the prayers.


Tomorrow is my US guided biopsy-9am. I am scared to death. Part of me wants to run far far away. I just feel like I cant bring myself to do it. I keep envisioning myself walking in to the office and telling the dr I just cant go through with it. I went to Walmart this morning and got extra strength, RAPID RELEASE Tylenol capsules. I am not messing around.LOL A client came in the other day and said her aunt had one and it hurt like "holy heck". Thanx. I needed to hear that. I am such a whiney wimp but still very scared. This coming from the girl that had her DD with no pain meds (not by choice though, my labor was too fast) but in the end I got a baby. This time I get a cut in my **** with some steristrips. Not the same.

Thanks for the prayers.

You will be in my thoughts today. I understand how you feel, I remember being petrified in anticipation. One thing that helped me was that I am shall I say well-endowed. I read somewhere that this actually equates to less feeling in the area. Not sure if that is true or just an old wives tale. I also think I was more scared of the likelihood of cancer than the procedure but really it is hard to distinguish between the two.

I thought my fear far exceeded the pain. I was so scared I was shivering, hence I was very grateful for the warmed blankets they used to cover.
Once it was over it was over, I had no pain. I have read here that a bag of frozen peas works wonders, but maybe that was after a lumpectomy?

Let us know how it goes. Do you know how and when you will receive results? Please request a copy of your path report.

Good luck.

The comments of your client about her aunt reminds me of a close friend who had been "fixed" (for the life of me I cannot remember the correct term for that procedure) right before my husband had his done after our youngest was born in 1995. Our "friend" told my DH that the surgery felt like a mule kicked him in the groin. Ah, thank you Bert for the pep talk. I could have offered Mr. Bert another surgery right that moment (without anesthesia) that would have taken the surgery to its ultimate conclusion.

Why can't I remember the name of that surgery. I am losing it. Off to work

 

[laurabelle]

sjaakie- Yes, I still have problems with numbness/tingling. It is a side effect from chemo (taxanes) I had some improvement over time but I have been on long term high dose steroids a couple of times the last few years and for some reason this made the neuropathy worse. I did not have my hands or feet iced during chemo. I have heard of people icing their heads to try to save their hair. I know there are some types of chemo that you may not lose all your hair, but for A/C and Taxol I don't think there was a thing I could do to save it. Oh well, it grew back.

Havinfun- Sorry you got green hair! I used to do hair and can tell you that all those chemo drugs will come out through your skin, nails and hair. I waited quite a while before I put any color in mine. Glad your stylist was able to help. Thanks for sharing your story. I know most women don't even realize that a rash could mean bc. I'm with you on getting out of the hospital ASAP! It's always better to be home! Thanks for the George Carlin post too!

CherylDan- How exciting! I'm so glad you are here for it too!

Ann-I'm glad you got the all clear!!! Enjoy the rest of the year off! I wish I could stay for the RFTC. I ended up renting a condo for the whole week 9/26-10/3 through skyacution ($219!!!) but the kids have to be in school on 10/1 so we're flying home on 9/30. I'm toying with the idea of staying by myself until 10/3, but I think the race isn't until Sat. or Sun, right?

Laurie- Glad you had a good trip! The family get together in Vegas should be fun! I guess your hubby needs to keep an eye on you! Did you finalize your fall dates for the race? I have no plans to grow up... but if I did, I want the cheez whiz job! Um, I think you mean a vasectomy...but saying he's been "fixed" is making me laugh!
Just said a prayer for Orlando and May.

Iluvthemouse- I hope everything goes well for you tomorrow. I had a U/S guided core needle biopsy, not sure if you are having the same thing. They gave me a local to numb it. I think I got Tylenol before too. Use the frozen peas, it really helps. And some TLC...Let us know your results when you can.

Maureen- I'm glad you are able to share your family with us. Your mom sure was a special lady. I guess we think alike. I'm all about making memories with my kids, sharing experiences, like the Philly cheese steak! Those are the family jewels I'm passing down...
Thinking of you and your dad today.

My washer gave up over the weekend and it's beyond repair. We ordered one Monday night but it's not going to be here until Fri. I took the kids to Sudsville this morning, their first time to a laundromat! Talk about making memories! (we actually did have fun!) Now I'm drying it all, whew!

 

[Sha]

I have a prayer request for the father of one of my friends. He has been in a hospital in New Orleans for weeks.

He has liver cancer and his doctors have just told the family that the procedures they have tried have been unsuccessful and he could not survive surgery to remove the tumors.

They are not sure if he will just stay in the hospital to control the pain or if he will be able to go home with hospice care.

His name is Orlando Grillo, he is from Cuba.

My friend's name is May.

Thanks everyone.

Tomorrow is my US guided biopsy-9am. I am scared to death. Part of me wants to run far far away. I just feel like I cant bring myself to do it. I keep envisioning myself walking in to the office and telling the dr I just cant go through with it. I went to Walmart this morning and got extra strength, RAPID RELEASE Tylenol capsules. I am not messing around.LOL A client came in the other day and said her aunt had one and it hurt like "holy heck". Thanx. I needed to hear that. I am such a whiney wimp but still very scared. This coming from the girl that had her DD with no pain meds (not by choice though, my labor was too fast) but in the end I got a baby. This time I get a cut in my **** with some steristrips. Not the same.

Maureen, Iluvthemouse and Laurie (and others too) prayers for you and those that you brought up.

 

[conniehar90]

Hi all - new member here! I was dx'd with bc in Mar 07 - Stage 3 ILC. I had a mastectomy, chemo, radiation and had my reconstruction surgery in Mar 08. I am currently on Tamoxifen. I am 40 years old, married with 2 kids - 7 and 10. My hair has started growing back and I am starting to look like a normal human again.

For the most part, I feel back to normal, but I still have some numbness in my feet and major hot flashes. And you really never get back to normal emotionally do you?

In May, I took a girls only trip to WDW with my mom and sisters. It was sooo awesome. I'm headed back with DH and the kids in December.

I just wanted to jump on here and offer my support to those who are starting or in the middle of this journey. I read this forum all the time, but just found you guys today. Looking forward to getting to know you!

Connie

 

[jackskellingtonsgirl]

Maureen, we will be with you and your dad in spirit today.

Maureen, I am thinking of you and your dad today.

Hi all - new member here! I was dx'd with bc in Mar 07 - Stage 3 ILC. I had a mastectomy, chemo, radiation and had my reconstruction surgery in Mar 08. I am currently on Tamoxifen. I am 40 years old, married with 2 kids - 7 and 10. My hair has started growing back and I am starting to look like a normal human again.

For the most part, I feel back to normal, but I still have some numbness in my feet and major hot flashes. And you really never get back to normal emotionally do you?

In May, I took a girls only trip to WDW with my mom and sisters. It was sooo awesome. I'm headed back with DH and the kids in December.

I just wanted to jump on here and offer my support to those who are starting or in the middle of this journey. I read this forum all the time, but just found you guys today. Looking forward to getting to know you!

Connie

Hi, Connie! Welcome!
My mom has stage 3 ILC. She had a lumpectomy on June 17 and she is meeting with the oncologist today to find out where we go from here. I am so glad to hear you are working your way back to "normal"! It helps to hear good outcomes!

 

[BeadyLady]

Hi all - new member here! I was dx'd with bc in Mar 07 - Stage 3 ILC. I had a mastectomy, chemo, radiation and had my reconstruction surgery in Mar 08. I am currently on Tamoxifen. I am 40 years old, married with 2 kids - 7 and 10. My hair has started growing back and I am starting to look like a normal human again.

For the most part, I feel back to normal, but I still have some numbness in my feet and major hot flashes. And you really never get back to normal emotionally do you?

In May, I took a girls only trip to WDW with my mom and sisters. It was sooo awesome. I'm headed back with DH and the kids in December.

I just wanted to jump on here and offer my support to those who are starting or in the middle of this journey. I read this forum all the time, but just found you guys today. Looking forward to getting to know you!

Connie

Welcome aboard! GAGWTA!
Connie -somebody did tell you chemo stays in you body for up to a full year after the last blast? so, not too worry about too much, as these things do pass. the hot flashes could be the Tamoxifin, but I found that too slows down once adjusted to it. Stay strong! Be happy! Keep smiling! Keep in touch! (better than I do)

and on the bright side, for myself, the lump in my arm was seen by my Onc Dr today and it's no way cancer! Yippee! Could be muscle related, and I'm to mild-heat on it till it goes. if not gone by next appt, then a arm mri to take a look see. I told Dr it could be my knitting muscle.

 

[jackskellingtonsgirl]

Just spoke to Mom's onc. Here is his plan:

Dose dense regimen of A/C (contingent on her MUGA being OK) for four infusions. Then 12 weekly infusions of Taxol. Then radiation.

He is going to schedule her to have a port put in next week, and hopefully her first infusion will also be next week.

There was extension in one of the 6 positive nodes. Her oncotype score is 23, which is the high range of the middle.

Anything jump out at you all? I am kind of shaky since I spoke to him so my brain is a little fuzzy.

 

[Sha]

what is an oncotype score? they never talked about that in school and I dont recall that with my mom.

prayers for you mom and you

 

[jackskellingtonsgirl]

what is an oncotype score? they never talked about that in school and I dont recall that with my mom.

prayers for you mom and you

It's a genetic test they run on the tumor to determine the risk of recurrence. It was initially used in node-negative women to help them decide if chemo was really indicated. If their recurrence score was low they could potentially just do radiation.

Now they are doing the test on node-positive women. The thing is, with positive nodes and nodal extension her risk of mets is too high to even think about skipping chemo.

Here is their website:
http://www.genomichealth.com/oncotype/pathome.aspx

 

[Sha]

It's a genetic test they run on the tumor to determine the risk of recurrence. It was initially used in node-negative women to help them decide if chemo was really indicated. If their recurrence score was low they could potentially just do radiation.

Now they are doing the test on node-positive women. The thing is, with positive nodes and nodal extension her risk of mets is too high to even think about skipping chemo.

Here is their website:
http://www.genomichealth.com/oncotype/pathome.aspx

Thanks!!!! you all teach me so much!

 

[Iluvthemouse]

Hi again ladies.
I just read the doc's paperwork and I am having a "ultrasound guided core biopsy w/possible clip placement". Now I am freaking out because very FEW woman have no pain with this type. I am so scared of the results, pain, procedure, pain, etc. I hate nights because the monkeys get so bad.
I want to go crawl in bed and pass the night away but that would just bring the morning on sooner. I just told DH I wont be good company tonight.
I need to get a grip.

Thanx for listening.

 

[jackskellingtonsgirl]

Hi again ladies.
I just read the doc's paperwork and I am having a "ultrasound guided core biopsy w/possible clip placement". Now I am freaking out because very FEW woman have no pain with this type. I am so scared of the results, pain, procedure, pain, etc. I hate nights because the monkeys get so bad.
I want to go crawl in bed and pass the night away but that would just bring the morning on sooner. I just told DH I wont be good company tonight.
I need to get a grip.

Thanx for listening.

Hang in there!! I can only imagine how frightened you must be! Hopefully the test won't be as painful as you fear, and the results will resolve your worries!

 

[judithen]

Gagwta!

Iluvthemouse, I had "ultrasound guided core biopsy w/possible clip placement" four years ago on both breasts. During the procedure, there was some pain when samples were removed that were deeper than the area covered by the local anesthetic. Placing the clips was no worse than anything else and hasn't caused me any discomfort since then.

My journal notes from that day say: "It wasn't that bad except for a couple of instances that involved deep core samples -- the novocaine hadn't reached that area and I needed another shot."

If there's one thing I've learned from this breast cancer experience, it's this: we women are a lot tougher and stronger than we think. It's amazing the courage you find within yourself when you need it. So give those monkeys lollipops and tell them to behave. You're strong, you're fearless and you're in charge


On an entirely different note, DH and I just got back from our Polynesian and Boardwalk Villas Fourth of July Vacation with our Disney Kids. Whew!!! It was wonderful. But HOT! First we all stayed at the Polynesian and then moved over to the Boardwalk Villas.

The Poly was better than I remembered it (since the last time we stayed there was in 1985! With 2 kids no less). Plus we got upgraded to the Concierge Level because of my Medical Requests...no other room at the inn. Unplanned for savings on meals. Would you believe that, because of all the peace and beauty we didn't even waltz near a park until the 3rd day after our arrival?!! We just...loafed. Unheard of but what heaven!

Then we moved over to the Boardwalk Villas. This studio was good...not the peace and beauty of the Poly...but fun. And boy, did we put in the walking! That place is made for walking. We figure that, if we walked at home as much as we do around the World, we'd be healthy in no time. I found that, even with the swankness of the Polynesian Concierge Level, I missed a microwave and kitchenette sink. Besides I like being told "Welcome Home".

So here we are trying to get into the thick of things again...and put in a nice walk every day. Our Halloween Family Reunion is right around the corner after all...and we need to keep up with all those young folk

 

[Pea-n-Me]

12 weekly infusions of Taxol

Twelve - weekly? Wow.

 

[laurabelle]

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

Connie Congrats on all you've accomplished! I gave up on the old "normal" lol, but I've found a new normal, and it's a good place to be!

Iluvthemouse- This is the same procedure I had, though I didn't have a chip placed as I was having mastectomies done later. I had a lot of samples taken because this was a lump I found in my scar (from my surgical biopsy) during chemo. Mamm. and ultrasound could not determine if it was a recurrence or part of the scar tissue...it ended up being scar. I remember the needle being loud, like a gun shot, and they warned me it would be, since you need to hold still and they don't want you to flinch at the sound. I know you are worried. Why not ask for some meds to help calm you for the procedure? I'm sure they would be happy to give you something.

jackskellingtonsgirl- So will the A/C be given every 2 weeks? I've read that weekly Taxol has improved outcome, and the lower more frequent dose should give her less side effects/toxicity...so it's a good thing. I did 4 A/C every 3 weeks, then 4 Taxol every 3 weeks. I was in a clinical trial to help determine the best infusion schedule. I think it's cool to see how it's all working out. I don't know much about the oncotype scoring but it sounds like they are going with the big guns, which is good! I know it's a lot to take in, and I think you are handling it terrifically!

judithen- Wow! Sounds like you had lots of pixie dust! I'm glad you had such a relaxing and fun trip! I love to just hang out as well as run around and do all the rides, the best of both worlds! I know what you mean about all the walking...it's never as much fun at home!

 

[jackskellingtonsgirl]

Twelve - weekly? Wow.

Yep. Like Laura mentioned, the outcomes seem to be a little bit better with the weekly doses. I looked it up after I got off the phone with the oncologist. That puts her total chemo at 20 weeks instead of the 18 I was expecting, but overall it isn't THAT much longer than it would have been if she had an infusion of something every 3 weeks.

Laura - I meant to tell you I enjoyed your pics! I went to some of those same places when I was about 6, but I didn't appreciate it back then!

Yes, Mom's A/C will be every 2 weeks. Her MUGA is scheduled for Monday. The only thing that might throw things off is her blood pressure. It was high, and they put her on meds for it a year or so ago. I noticed the day I took her to the hospital that it was lower than mine, and she had skipped her meds that day. When she went in yesterday it was REALLY low, so the oncologist told her to stop taking the meds and come back Friday so they can check it again. If it remains really low they may have to do some other tests to sort out WHY it is so low before they do the MUGA.
I talked to Mom last night and she is a little concerned about the port. I had talked with her before about possibly trying to go without one, but with 16 infusions there is NO WAY they could go without. Can you guys tell me a little bit about the insertion procedure, and about the port itself? Mom said she thought it was entirely subcutaneous so they will have to puncture her skin each time? Is that right? It will be inserted by her collar bone if that makes any difference.

Judithen - Glad you had a magical trip!

Iluvthemouse - I will be thinking about you today and hoping for the very best!!

 

[jackskellingtonsgirl]

Oh, I also wanted to ask you girls about bone pain. I know Linda had mentioned that is was really horrible for her.

Mom will be getting Neulasta injections. Any advice on how to decrease the bone pain? It seems like there was some OTC med (like an antihistamine or something) mentioned not too long ago but now I can't remember which side effect it was for. I should have written it down.

Thanks!

 

[laurabelle]

I had a port for chemo. Mine was placed below my collar bone, opposite side of my cancer. It is placed under the skin, you could see a bump where it was. Only the nurses are allowed to access it. The needle they use is L shaped. I know some people have topical numbing creams applied prior to the stick, but I never did. It's one quick stick, nothing at all like digging around hunting for a vein! Once the port is accessed, they use it for blood draws and giving chemo. It is flushed afterwards to keep it from clotting. I was awake for the procedure. They gave me some pretty cool meds, so I didn't care so much what they were doing! The surgeon who did it was cool. He asked me if it was ok if he sang along with the radio, it helped him concentrate...Sing away I said!!! After he placed it, they needed to do an xray to make sure it was ok. I never had any trouble with the port. I miss it when I have blood draws!

 

[laurabelle]

That's right... was it Benedryl or Claritin? Hopefully someone else remembers. I never had Neulasta, but Taxol gave me flu-like symptoms, bone pain in my legs.