Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

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

We had the most magical trip ever!!! The last day we were picked to be the Epcot family of the day and opened the park!!! We met a bunch of characters then rode to Test Track in a Test Track car! They let us ride it first, by ourselves, then asked if we wanted to ride again....heck yeah! They gave us more FPs and a FP to meet the characters too. We would have had the special viewing area for Illuminations that night, but we had to leave for the airport at 5:00. My youngest said at first she thought it would be the saddest day, being our last day there, but it ended up being the best day of the trip!

My UC is not behaving and I have officially failed Remicade treatment. They are in the process of contacting my ins. co. today to see if they will cover Humira. It is not approved for UC yet, but they've used it for Crohn's and some UC patients. If ins. doesn't approve it, I can't get it...it's $2000 per shot, 6 shots the first month, then 2 shots per month after that!

I wish I was back in WDW...

 

[Pea-n-Me]

Laura, so glad you had a great trip! What a bummer you had to leave that day! How neat to ride in the Test Track car! We were Soarin Family one day and stood right next to the Test Track car for photos - I wanted to hop in so badly, LOL! Where did you stay this time and how was it?

 

[jackskellingtonsgirl]

Laura, welcome home! I am glad you had a magical trip!
I hope you are able to get your insurance to cooperate!

 

[snappy]

How was Vistana, Laura?

 

[snappy]

GAGWTA Ladies!

Hope everyone had a nice weekend and that all are doing well.

I am doing ok. I have my appt. at Sloan Kettering on Tuesday morning! I feel like I've been on a mini-vacation but now it's time to "go back to work," so to speak. There have actually been some days where I haven't thought about my BC, but as we welcome in April, I know that all the scary stuff is coming up soon. I DO want to get going already, the waiting has been excruciating, but I am still terrified.



We'll be there starting Dec. 7th. This will be the longest trip we've ever taken to WDW. I am looking forward to staying at WL and seeing the holiday decorations. It would be so cool if we were there at the same time!

Good luck tomorrow. Keep us up to date.

 

[snappy]

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

We had the most magical trip ever!!! The last day we were picked to be the Epcot family of the day and opened the park!!! We met a bunch of characters then rode to Test Track in a Test Track car! They let us ride it first, by ourselves, then asked if we wanted to ride again....heck yeah! They gave us more FPs and a FP to meet the characters too. We would have had the special viewing area for Illuminations that night, but we had to leave for the airport at 5:00. My youngest said at first she thought it would be the saddest day, being our last day there, but it ended up being the best day of the trip!

My UC is not behaving and I have officially failed Remicade treatment. They are in the process of contacting my ins. co. today to see if they will cover Humira. It is not approved for UC yet, but they've used it for Crohn's and some UC patients. If ins. doesn't approve it, I can't get it...it's $2000 per shot, 6 shots the first month, then 2 shots per month after that!

I wish I was back in WDW...

Keeping my fingers and toes crossed that the Humira shots are approved. It is disgraceful that the insurance companies have so much power. It is not like you did not give the Remicade a chance to work. It seems like you have been doing that course of treatment for awhile.

Hang in there, kiddo.

BTW, how were the Easter crowds? I have been wondering if the economic slump is affecting travel.

 

[DeeCeeSW]

GAGWTA!

Glad you had a good trip, Laura. I, too, hope that your insurance company does the right thing.

WOW. What a day. MSKCC was "all that and a bag of chips." The experience was night and day compared to the hassles and problems I had to deal with during my time at RWJ in NJ. Everyone I encountered was delightful, knowledgeable, and patient. EVERY SINGLE PERSON. My breast surgeon is wonderful, sweet, VERY smart and THOROUGH. She explained EVERYTHING to me, every procedure, everything. I told her she is a godsend. I told her how I was told NOTHING at RWJ and how I had to research everything on my own, how my surgeon communicated with me via e-mail, how he never even showed me a single mammo pic so I could see for myself exactly where the cancer is and why a mastectomy is really the only option, etc.

Effortless, easy, these are the words that come to mind when I think about today at MSKCC. A huge weight has been lifted....

Surgery is scheduled for 4/28 and that's really OK. Just as I thought, 2 weeks later than the original plan at RWJ. It's going to be worth it.

I was offered 4/23, but opted for the later date so I could coordinate a schedule with my cousin (who will be here to care for me and my DS for two full weeks!). The SLN biopsy will be done AT THE SAME TIME as the mastectomies (she could not figure out why my former BS insisted on doing it seperately). She says she is optimistic regarding my nodes. However, she wants to do the SLN on BOTH sides even though no cancer has been found in the left breast. I was taken aback by that, but her explanation for doing it this way is that once the left breast is removed it will also be looked at "with a fine toothed comb," so if cancer IS found in the left and a SLN biopsy was NOT done, it will have been too late, bc she would not be able to go back and test the nodes. She said that the risk of infection is almost nonexistent if the SLN shows that my nodes are clear and axillary nodes do not need to be removed (and I could have blood drawn and blood pressure cuffs used on both arms after the SLN, etc.).

Any thoughts on this?

Overall, I am VERY pleased. My new BS was even able to switch my appt. with the new PS get me in to see her a week early. I see PS in two days!!!!! This is all very EXCITING. I never thought I would describe anything related to BC in this way, but it truly is.

Hope all is well!!!!!!!!!

 

[MerryPoppins]

Wow, the difference seems to be night and day. I'm glad you're feeling more positive and that today went so well. Sounds reasonable to me to do the SLN on both sides. I'm so glad you decided to check with another doctor. Sounds like you made the right move.

Crossing my fingers for Humira approval. I also think it stinks that insurance can tell the doctors what to prescribe. Don't even get me started on that.

BTW, sounds like a great trip!

My allergies have been kicking up. Then today I woke up with terrible sinus pressure. I feel terrible. I'm wondering if I'm getting a bug or if I'm getting a sinus infection? Time will tell, I guess. When my allergies get messed up, my whole system gets down and I often get sick. This has been a bad winter for me. I've been sick two or three times. I'm ready for it to be over.

DD leaves tomorrow for her trip to New York City with choir. They'll be there until Monday morning. And her group has tickets to Mary Poppins. She's so excited.

 

[jackskellingtonsgirl]

It sounds like several of you are gearing up for some important things! Sending each of you lots of good wishes and pixie dust!!

My mom sees the oncologist today at 3:15. She called her primary care Dr. yesterday to ask for the results of her biopsy but they never called her back. I am assuming that's because they want the oncologist to talk to her about it.

She is feeling optimistic (or she may be in complete denial). I am anxious to hear what the oncologist says because sitting around not knowing anything for the past week has been maddening.

I booked flights to take DS back up to see her over Memorial weekend. She fussed at me for wasting my money.

I'm sure I will be back here this evening with lots of questions.

Have a great day, ladies!

 

[snappy]

What a pleasure it was to read you post, DeeCEE SW about your experience at SK yesterday. My dear brother Tom who lives in Manhattan had some health issues in 2005. He had wonderful care at SK, has one of the best docs on the planet from the sounds of it.

I am glad your experience was likewise. Your post was incredibly upbeat. I am so glad you continued to pursue your options and did not "settle" for your first set of docs.

I hope the P.S. is just as competent as the surgeon.

Once things are all settled, I think you will have a sense of relief. I know I did when I was going throught the before surgery round of doctor visits in 2004, but it was weeks before I settled on my doc and hospital. I could not believe how much better I felt once all the decisions were made.

Merry, funny you should mention allergies. The pollen it is a flying around here. I am miserable. I actually am doubling up on meds for it, claritin and benedryl when the allergies "break through." Although I would dearly love to walk more, right now in the am I am a mess.

Down here I am hoping we are near the end of it, as the trees are mostly leafed out except for the pecans. I am able to go to work but boy am I ever grumpy. It is a little hard on family relations, if you know what I mean.

Jackskellingtonsgirl, it is common to not get path results over the phone, unless you preapprove this in advance with the doc. With my doc, he told me that he would call me himself with the news if I wanted to hear it over the phone or I could wait till the next appointment (which was soon).

Honestly, I could pretty much tell from the biopsy and the way the radiologist framed his words to me after the biopsy, something to the effect that they were able to accomplish what they set out to do, that my tumor was cancer.
So the call from the surgeon was what I expected. It turned out to be mostly DCIS, so that was the good news, very treatable.

By all means plan your trip in May. Your mom is just trying to be brave. It can be hard to ask for and accept help. Some women put a lot of pressure to show how well they are doing with it all. I think the support of family and friends adds significantly to the healing process.

Keep us updated on your mom when you can.

 

[piglet too]

It sounds like several of you are gearing up for some important things! Sending each of you lots of good wishes and pixie dust!!

My mom sees the oncologist today at 3:15. She called her primary care Dr. yesterday to ask for the results of her biopsy but they never called her back. I am assuming that's because they want the oncologist to talk to her about it.

She is feeling optimistic (or she may be in complete denial). I am anxious to hear what the oncologist says because sitting around not knowing anything for the past week has been maddening.

I booked flights to take DS back up to see her over Memorial weekend. She fussed at me for wasting my money.

I'm sure I will be back here this evening with lots of questions.

Have a great day, ladies!

I am keeping you and your mom in my thoughts today.


My one sister has taken on the role of calling my dad about some of our concerns. My nephew is due to graduate from Marine Boot Camp at the end of this month in San Diego (we are near Chicago) and our mom is planning to go. We don't think her doctor knows this, and that is where dad comes in. We are concerned about her health, and don't feel she will be healthy enough to take the trip. We are also concerned about it being just too great of a risk. As much as we do not want to take away something she is looking forward to, we need to make sure for her sake.

 

[jackskellingtonsgirl]

Snappy - Thanks! I think Mom was irritated that they didn't call her back, but I wasn't the least bit surprised. She didn't say if they offered to give her the results prior to her meeting with the oncologist. I tend to think they probably didn't.

Kirsten - Your mom has just started chemo? Is that correct? I hope if she is not well enough to travel that you are able to talk her into staying at home without too much of a fight! If she is able to attend the graduation I hope the trip goes well!

DeeCeeSW - Everything sounds like it is working out! My friend's mom went to SK 4 years ago for BC treatment and they were very pleased. She has been doing well since then. Good luck with the next phase!

 

[DeeCeeSW]

DeeCeeSW - Everything sounds like it is working out! My friend's mom went to SK 4 years ago for BC treatment and they were very pleased. She has been doing well since then. Good luck with the next phase!

Thanks, and my thoughts are with you and your mom

 

[Sha]

I just would like to say thank you to those who kept my friend & former coworker, Emily in prayers and her daughter Nicole. Nicole passed away yesterday from Cancer of the tongue. She is at peace and was never angry about it. She was happy with the life God gave her Please continue to keep Emily in prayers.. and Nicole's husand and 2 small children (6yr old and 18 months)


And if I may ask for some through next Friday for my nursing class and myself... we have a test on Tuesday and our Final on Friday

Sorry I havent been around... things are getting a little crazy now... trying to keep everyone in prayers though

 

[Sha]

Got this though email and wanted to share with everyone

http://pixiesplace.com/trainride/

 

[jackskellingtonsgirl]

Got this though email and wanted to share with everyone

http://pixiesplace.com/trainride/

Thank you for sharing this! Even though it made me cry.

 

[MerryPoppins]

Oh, thanks for sharing that! It was beautiful.

And I'm glad Nicole is at peace. I'll continue to pray for her family. It's so sad when cancer takes anyone, especially those with a young family. And more prayers being said for your class. Hope you all pass with flying colors and can keep the anxiety to a minimum.

GAGWTA!

 

[jackskellingtonsgirl]

The verdict is in. My mom has invasive lobular carcinoma.

They are going to start her on oral meds to shrink the tumor - she said the name of it (I think it starts with an "A"), I need to find out for sure. They are not going to do chemo right now. They are sending her for a CT and a bone scan next week to look for mets. She will have a mastectomy sometime this summer.

She was standing in line at the WalMart deli so she said she will call me when she gets home. I was HOPING she would call me as soon as she walked out of the oncologist's office!

EDIT: The drug is Arimidex. Has anyone here had experience with that?

 

[annrae]

Got this though email and wanted to share with everyone

http://pixiesplace.com/trainride/

Thank you so much for sharing this - so touching and so sad for this family.

Laura, I hope you are feeling better - I'll be thinking of you and hoping the insurance company will decide to pay for the shots for you - I cannot believe how expensive this medication is.

Your trip sounds like it was wonderful and you certainly had some very special surprises. How nice! Take care, Barbara

 

[lookingforward]

The verdict is in. My mom has invasive lobular carcinoma.

They are going to start her on oral meds to shrink the tumor - she said the name of it (I think it starts with an "A"), I need to find out for sure. They are not going to do chemo right now. They are sending her for a CT and a bone scan next week to look for mets. She will have a mastectomy sometime this summer.

She was standing in line at the WalMart deli so she said she will call me when she gets home. I was HOPING she would call me as soon as she walked out of the oncologist's office!

EDIT: The drug is Arimidex. Has anyone here had experience with that?

I believe Arimidex in an estrogen inhibitor that is given to women who are post-menapausel. Not sure of its side effects but they all come with some. I am sorry to hear about her diagnosis! But to think positive...her problem is identified and she will now get the best treatment available. All my best to you and your mom! Let us know when you need a shoulder or someone to vent to...the women on this thread are INCREDIBLE (and men, too! )