Dis Breast Cancer Survivors - GAGWTA!

[laurabelle]

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

Beth- It's so good to see you posting about your son's prom! What a special time to get immersed in...I can't yet imagine my girls' proms, but I'm sure it brings back alot of memories! He sounds like a good kid too, not keeping her out all night! I hope he has a wonderful trip to WDW!

I'm sorry this port caused you pain. Yes, take that Vicodin sista! I was so grateful to have my port, but had it removed during my masts. Now that I do Remicade infusions the nurses are begging me to get another one, but I don't know. It's just once every 8 weeks, not like a 3 week or weekly chemo regimine. My veins are pretty bad though...

I'm glad you are going to MSK, I just know you'll be on the right track under their care!
Praying for you and your family Beth...

Hubby's cardio appt showed that during the 24hr monitoring his heart rate stayed up between 98 and 120 the whole time. And the times it was most elevated, he wasn't doing much of anything. Picking my dd up from a party Fri night, and then again at 7:00 Sat. morning it went up, but he wasn't doing anything then. The doc gave him a month long monitor to wear. He doesn't need to wear it 24/7, but if he has an episode, he hits a record button, then calls a number to transmit the reading and they'll tell him if he needs to go to the dr or ER. The doc is still uncertain of why his heart rate is so high, wants to look at this more first. He's not pushing hubby to take Beta Blockers yet, which is good because the side effects aren't appealing. I have really restrained myself and have NOT Googled about it! I'm just waiting patienly while the doc gathers his info...

Thanks again for all the thoughts and prayers for Lisa and her family. I'll keep you all updated when I hear more. I'm so grateful her doctors are still willing to continue palliative care and not just throwing their hands up in the air. She's pretty spunky and full of life yet!!!
Her pain was back under control when I saw her yesterday, but hopefully they'll figure out some oral pain meds to send her home on, and that the PT will help with her walking.

 

[NHAnn]

Beth! I'm so glad to read your post!! Love the details on the prom. They sound like a beautiful couple..inside and out. 2 years ago we were getting ready for DD's senior prom, and the year before that she went with a friend to his too. I shall have to find a pic or two to post...I just love proms....such special memories.....
Hugs and prayers with you as always. Waiting stinks.

Laura...I hope that the docs can get your DH on track soon!!


Happy Tuesday to all.....it finally seems like spring here this week!!
GAGWTA

 

[annrae]

Hi Laurabelle: I hope everything is beginning to look up for you and your family. I had the same problem with my heart that your husband is experiencing. After an angiogram showing my arteries were not at all blocked and doing many tests they came to the conclusion that I had "broken heart syndrome." This happened on Thanksgiving Day and it probably took a month for me to begin to feel like myself again. My heart felt like it was jumping out of my chest! I am on a combination of drugs now but have not had an episode since going on these drugs. I felt like I did not have a choice in the matter with the drugs. EKG did show a left bundle branch block which I guess many people have and also an inflamed muscle in the heart. I do not have any restrictions at all! I hope they will find something that will help your DH and he will begin to feel better soon. Has he had an angiogram yet? Two year check up for BC was ok!! Will be thinking of you and I am also thinking of Beth.

 

[laurabelle]

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

annrae- It's good to hear from you, especially with the great news about your check up!!! I'm so sorry you ended up with this heart condition. Are the drugs beta blockers? I started reading about them and they make me nervous... Hubby hasn't had an angiogram yet, just EKGs, a stress test, and echocardiogram. He never did hear back from his cardio dr. yesterday, I'm not happy about that! We will get to speak to him today! Hubby's home again, and says he wants to try to just sleep in tomorrow and go to work whenever he gets up...normally he gets up very early and has a long train commute. He slept alot yesterday, and says he doesn't feel as bad today.

Thinking of you all...

 

[NHAnn]

Good morning everyone...
GAGWTA

Hello annrae! Nice to see you!

I had my monthly dinner with 2 of the ladies from my support group last night. Everone is doing well...one lady just got back from a trip to Turkey and Egypt! She brought us little trinkets (to clip on a key chain or purse or car morror) that are beaded/cord thingies to ward off the Evil Eye!! She's on Aromasin, the other lady is on Arimidex and I'm on what we think is Arimidex (but maybe Tamox) ....you should have seen the three of us trying to get out of the cramped booth after sitting for 2 hours....with our varying degrees of stiffness and soreness in the hips and lower extremities...

Hope you all are feeling well today

 

[Pixiedust34]

Just stopping in to say "hello!" to everyone and to say that you're all in my prayers.

GAGWTA!

 

[Dan Murphy]

Wow, I just stopped by here for a 'quick check' and I see I have about 6 or so pages to catch up on, some long posts in here.

But did see micki7337 checking in and wanted to pass on the name of a wonderful person to contact here on the DIS. Tiger Fan (Lisa), an IBC survivor of about 6 years now, is a great person to touch base with. Here is her profile here on the DIS, best would be to use her email link there. Maybe say hello to her, I know she will get back to you and provide some great insight, comfort and ideas. Here is her link. http://www.disboards.com/member.php?userid=341 Please do. My best wishes and prayers are with you, micki, and continue with everyone here.

Now, over the next day or two, I have to catch up with all you beautiful ladies here.

 

[bubbleprincessmom]

good morning everyone meant to post yesterday but a house full of teenage boys prevented that from happening! Had my consult with my surgeon monday but since I had already had my "dis" consult knew what to expect in that regards. My biopsy is scheduled for this friday. I think the only thing that has me a little tiny bit freaked is the wire that is inserted prior to surgery . only cause the idea of having something sticking out of me for awhile is odd. I should have results back by tuesday so hoping to keep busy over the weekend. If I'm not to sore from the incision and the weather is nice were taking the kids to the "drive through" (as my dd calls it) movies Saturday. You might remember it as the drive IN movie! So will let you all know how it goes later this week. thanks for all the info and good wishes though it means alot
monica

 

[NHAnn]

..Had my consult with my surgeon monday but since I had already had my "dis" consult knew what to expect in that regards.
monica

DIS consult!! I love it!!
I had a wire locator procedure last year before my biopsy too. Actually I had 2 wires That part of it was a bit long and unnerving for me...because of the location of my calciifications it made the placing of of me into the mamm unit for good pictures and the actual insertion of the wires a bit difficult (on the underside of the breast ). Did they offer you anything like Valium or Xanax for before your wire locator procedure? You might want to ask about that. In any event I couldn't really see where the wires were coming out of the skin because of where they were. I did get a glimpse of one once I was laying on the surgical table but at that point it was time to start the "knock me out" drugs for the procedure It was a very very fine wire...almost hair-like. They gave me a prescription for vicodin for once at home....I only took those for about 24 hours or so, then switched to tylenol for a couple more days.
Take it easy and ice ice ice when you get home...it really helps !! We'll be thinking of you!!

 

[Tiger Fan]

Ok, girl, I'm right here with you in spirit. I was also diagosed on a Thursday (just thought I'd throw that silly info in ) My DD had just turned 3. I read all the statistics (probably more than I should have, but I wanted to know what I was up against). The truth is, only God knows when it's our time. My oncologist is Very aggressive. The bad news is that I've been pretty sick off and on for the past six years, but the good news is that I'm here 6 years later and 11 Disney trips later. Our first trip was planned for June after I was diagnosed in March. Everyone thought I would and should cancel, but I felt then more than ever that I had to get there to make those memories with my little 3 year old. I felt like she wouldn't remember me she was so young. Well, she turned 9 in February and we're still trudging along. If all goes well, we'll be back at WDW in May/June of this year.

Inflammatory Breast Cancer is different than your basic run of the mill breast cancer. Your doctor is on the right track to recommend chemo first and then your surgeries. I could go on for days about all the surgeries I've done and why we thought that was best, but I'll wait to hear from you and make sure I'm not over stepping my bounderies. The first four doses will be of adrimycian (we call it the red devil) and cytoxin it's pumped in through a syringe. Your nurse will get all double gloved and wrapped and wear a mask, cause God forbid even a drop of this deadly stuff get on her, yet she's pushing right into your veins !! Try to keep a good attitude, I know you'll hear this a million times, but it will help with your little one. We decided to not lie to her in any way. Now that being said, you have to filter what you say so that at whatever her age she can understand and not give her too much info that she's lost and confused. We let Emily be as involved as wants to be. Sometimes she's helped change my dressings, she even cleaned my tubes and threaded out the bloodclots on my drains. She would come in from school and sterile her hands and then put those gloves on. This helped her feel like she was making a good contribution to the family. It was precious. She's basically seen me be sick for 2/3 of her little life. It's made her very strong and very compassionate. She is mature way beyond her 9 years and we get told this numerous times so it's not just a bragging Mommy here !

I'll close for now, since it is after 4am (obviously insomnia comes with territory too - I've got scan results later today and I'm just a little nervous)

Take care and know that you can email or even call me at any time. I'll give you my email here bigtigerfans@aol.com. If I haven't responded back timely that means that I've not been up to the internert, but Dan could give you my cell number which I always have with me. Helping others and talking about this disease has been very therapeutic for me. Others that might not have worked, but for me it's been great. Just let me know if there is anything I can do for you. If your daughter wanted to talk to Emily or just to know that there is another kid near her age going through this may help. When I lost my hair the first two times Emily was 3 and about 5 and it was no big deal at all. she called it "boy hair" and didn't like wigs and we wore hats only if they looked really cute with our outfits. However, this most recent time was this summer and she was 8 going on 13 you know what I mean - and for the first time when we went out she asked if I could wear my hat. I could tell she was embarrassed. It broke my heart and I immediately complied and acted like it was not big deal. We talked about it later and even then she realized it was silly and now doesn't like me to wear hats, only if I want to. She's even growing her hair for "Locks for Love. It's way down her back, but she wants to cut her 10 inches and still have long enough hair to put into a ponytail as she's a big athlete and doesn't want to give that up just yet. She's most likely got just the summer to go and then she'll have it long enough. She's very excited. Again you are on my daily prayer list and I'll be waiting to hear from you.
Lisa
Tiger Fan

I was diagnosed with inflamatory breast cancer this past Thursday. I told my 6 year old DD this morning. My heart is just breaking...I am just so scared....I HAVE to get thru this!!

Please pray for me and my family. I pray that I have strength that I read in so many of your posts.

 

[laurabelle]

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

Dan it's so funny you mentioned Lisa to micki, I was just thinking of her and going to post...

Lisa-And here I see you posting for yourself sista! It's so good to hear from you! I really appreciated reading more of your story. As much as we hate having our kids raised around this disease, especially for nearly all their lives, it does make them better people... I'm glad you've got another Disney trip on the way! I'm praying for you that this scan shows an incredible improvement sista!

Monica- Dis consult- Love it! You'll probably feel good enough for the "drive-through" movies.A nurse once told me a good thing to put on the incision is a ziploc baggie of frozen peas. Works great! I'm praying it's a relaxing, distracting weekend for you...

Ann- What cool (and appropriate! ) gifts! Isn't it great to meet with survivors in person!?!

Kelly-

Update on hubby: The cardiologist wants to schedule Dan for an esophageal echocardiogram. He suspects the problem is electrical, like maybe a valve misfiring. Hopefully the test will show what's causing this. If that's the case a surgical procedure should take care of it. He doesn't want to put him on any meds yet until he gets a diagnosis. The cardiologist also mentioned his EKGs both at his hospital when this first happened, and at his office were abnormal, but the ER at GBMC (different hospital) said his EKG there was normal! The doc said that has to be wrong. On Dan's EKG when the line is supposed to go up, it goes down instead...

He just left for work, but he says he's not going to stay all day. He has a stressful job, though he's handled that stress well through the years. He's supposed to testify at a hearing next week (he's an energy economist for the fed. govt. in D.C. and an expert witness) and he has to meet with attorneys about someone taking over his testimony.

Thanks for keeping him in your prayers sistas, it means so much to me...

 

[Pea-n-Me]

GAGWTA!

Lisa, nice to see you posting! Yours is an amazing story (I didn't realize you had IBC). Your DD sounds like an awesome young woman (seems to be a trend here, anyone else notice that?). Wishing you a wonderful trip this spring, and of course hoping you hear good news with your scans. You are in my prayers.

Laura, I just wanted to offer some reassurance to you about beta blockers. Millions of people the world over are on them. When someone has a cardiac event such as acute coronary sydrome, they are almost automatically put on metoprolol and aspirin at least, that's how common they are. The reason is because it has been shown in study after study that beat blockers help prevent "recurrence" and improve survival odds (hey, kind of like in BC ). There are some people for whom another class of drug might be better, but those are mainly people with chronic lung conditions such as asthma or copd. Remember, you always have to weigh the risks and benefits of taking something vs not taking it. Tachycardia strains the heart because with each and every beat it is going faster than it should, and over time you can see evidence of heart strain.

Just saw your post as I was writing. TEE (transesophageal echo) will take a close look at the valves opening and closing, how well the heart is pumping, and also make sure there are no blood clots associated with the tachycardia (btw, is it a normal rythm or is it atrial fibrillation - the latter is more associated with clots). I presume they are thinking about doing an ablation if everything looks good on echo? They may offer you a choice between medication and ablation, the medication being the conservative approach. Sometimes people choose that, then see how it goes. If the tachycardia comes back, then they move on to ablation. Some choose ablation first. It's an individual choice. Good luck in your decision making, let me know if I can help with any information.

We meet today with DHs ENT to go over the CT results and see what the next step is for him in regards to the two types of surgery he has to have (tonsils and sinus). The CT a year ago showed he had so much pressure from his sinus on his septum, it was bending it. Good news is that he accepted the offer on his new job yesterday, and starts Monday. I'm happy for him.

 

[WeluvDisney2]

Micki7337, I was diagnosed with Inflammatory Breast Cancer last fall. I will send you a PM. Love, Monique

I have read this thread off and on over the past few months. I always found survivors such an amazing group of people....now it appears I was destine to join.

I was diagnosed with inflamatory breast cancer this past Thursday. I have had the CTs and bone scan but have been referred to the oncologist to start chemo immediately. I will find out the extent of my condition on Wednesday. At this point I'm trying to just breath. I told my 6 year old DD this morning. My heart is just breaking...I am just so scared....I HAVE to get thru this!!

Please pray for me and my family. I pray that I have strength that I read in so many of your posts.

 

[snappy]

I am sending loads of good thoughts for your DH, Laura. Hoping his day today is less stressful.

Congrats to your DH, Linda on his new job. Will his surgeries be scheduled soon?

Great to hear from tigerfan Lisa and Monique. The help provided here truly is amazing. How great to be able to locate someone who has been there.

Congrats on your good exam, annrae. I am going for mine in less than 3 weeks. I need to go in for the chest xray and blood work soon.

Great to see you post, Beth. Glad your wait will be over soon for the trip to NY to SK. It will be good to get started on your treatment plan.

Bubbleprincess, glad we have not scared you too much. Love your consult comment. I wonder what docs would think about all of us here? Please post after your biopsy so we know how you did. Is someone going with you?

 

[micki7337]

Micki7337, I was diagnosed with Inflammatory Breast Cancer last fall. I will send you a PM. Love, Monique

Thanks Monique!!! I sent you a PM.

Thanks all for the kind words and encouragement. My doctor's visit yesterday went great! My cat and bone scans came back clear so the "C" is only in the right breast. I am scheduled for a few more tests and a port installation next week. Looks like I will start chemo at the end of April. I will have a lovely cocktail of three meds on a weekly basis. Each cycle will last a month - 3 weekly infusions with one week off for good behavior! Then we start it all over again. Right now they are looking to have me complete 2 to 6 cycles before surgery to remove my breast. They will continue to biopsy to see how it is reacting to the treatment. Once they feel it has shrunk - anywhere between the 3rd to 6th cycle, they will schedule me for surgery. They will also then decide how much more chemo post surgery and whether I would benefit from radiation. As someone mentioned in an earlier post, hercerptin seems to be the wonder drug for treatment of IBC. The doctor even told me he plans to keep me on it for a year past the end of my treatment to help reduce the chances for a reaccurance.

Thanks everyone! I will write more as I settle in to my new life but for now I am at peace and I know I will be alright. This is just a journey that God has decided I need to take. His reasons, while unclear right now, will eventually be revealed. For now, he is carrying me thru...

Margie

 

[NHAnn]

....... but for now I am at peace and I know I will be alright.

GAGWTA!!!!!GAGWTA!!!GAGWTA!!!

 

[bubbleprincessmom]

Saturday morning and I feel as though I have been hit by a truck, but not as bad as I imagined it would be. The biospy went well and I am waiting for Tuesday to get the results. For the most part I am fine although I will admit to some "breakthough' worry from time to time. The odds are in my favor I just spent way to many years at the childrens hospital with my son to know that not everyone wins at the odds game. My boyfriend stayed with me the entire day and waited on me hand and foot. I have never been so pampered in my life (did I tell you I was dating my high school sweetie...after 30 years we reconnected after my hubby of 18 years filed for divorce a few months ago...who needs a soap to watch...just talk with me awhile lol) anyway thanks again for all your support here...I will be sure to let you know as soon as I know anything!!!

 

[snappy]

Saturday morning and I feel as though I have been hit by a truck, but not as bad as I imagined it would be. The biospy went well and I am waiting for Tuesday to get the results. For the most part I am fine although I will admit to some "breakthough' worry from time to time. The odds are in my favor I just spent way to many years at the childrens hospital with my son to know that not everyone wins at the odds game. My boyfriend stayed with me the entire day and waited on me hand and foot. I have never been so pampered in my life (did I tell you I was dating my high school sweetie...after 30 years we reconnected after my hubby of 18 years filed for divorce a few months ago...who needs a soap to watch...just talk with me awhile lol) anyway thanks again for all your support here...I will be sure to let you know as soon as I know anything!!!

You sound so like me. I "reconnected" with DH at age 23 who I dated throughout high school. We went to each other's dances/proms, etc. but went our separate ways after HS graduation. We have been together (this time) since 1976, oh my gosh, is that actually 30 years? If you include the years in high school, add another 2 and a half.

Separating when we did was actually a good thing, I think we both grew up a lot. I could have never managed the past two years without him.

I hope your enjoy the pampering. We so often are taking care of others, we forget how to be taken care of ourselves.

 

[Pea-n-Me]

The odds are in my favor I just spent way to many years at the childrens hospital with my son to know that not everyone wins at the odds game.

I can relate to that. I'm glad you made it through, and hope you can find something to take your mind off things this weekend. How about a good movie? Hang in there.

Cool stories about connecting with your guys. I met my DH when I was 18, he's a gem.

GAGWTA!

Hey, have any of you been to an IKEA store?? http://www.ikea.com/ms/en_US/ They opened one here in MA last fall. We went recently for the first time and I've already been back again. Cool stuff! (P.S. Check out the kitchen planner, guys. Ann, it might be worth a trip down from NH to see the store!)

 

[laurabelle]

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

Oh Happy day!!! I got my Disney Visa email last night about the new package (it's free dining!) told hubby about it early this morning and booked at 7:00a.m.! We're 2 adults, a junior and a child, 7nts POP, 7day base tickets plus dining came to $1564.37. The CM was floored, he said, "Do you know how much money you just saved??? Before I added the discount, the package would have cost $2609.83!" That's a savings of $1045.46!!! Obviously if I had actually been planning this trip, I would have gotten a AAA package to get the room discounted, so the savings wouldn't have been this great, but to be sure I saved a ton of money, no finance charge and 6months to pay for it, and an unexpected Disney trip the week before school starts up again!

I have been on this silly computer all day! I planned my dining and had to change one ADR and Disney screwed up royally by giving me to wrong confirmation number which was attached to my credit card...an hour later on the phone with a supervisor, it's suppposedly taken care of...

Hubby's test is scheduled for Wednesday... Thanks for all the good thoughts and prayers. Linda, I have another good friend who told me she's been on Beta blockers for years and she's fine on them. Hopefully if it's what the doctor suspects, the procedure to shock the valve back into sync should do it, with no more meds needed. I have another friend who had this done before she had cancer, and even on chemo, she's never had a minute's trouble with her heart! I feel much better about it!

bubbleprincessmom- I'm sorry you are having so much pain. I'm glad your man is pampering you though...this is quite a test, looks like he's passing! Neat story about hooking back up again!

Margie- That sounds like a great plan of attack sista! I know many who are thriving on Herceptin, it's getting rave reviews! And doing chemo first to shrink it seems to be very effective too. So glad you have that peace from the Lord sista...