Dis Breast Cancer Survivors Part II -GAGWTA!

[Belle68]

Thank you for the link Laurabelle.

Also, Sha, we go september 13th for to weeks, we had already booked before I was diagnosed and the breast care nurse told me not to cancel there was a very good chance my treatment would be finished and she will be right . What a perfect end to a difficult year - disney magic is the best medicine of all

 

[Sha]

Thank you for the link Laurabelle.

Also, Sha, we go september 13th for to weeks, we had already booked before I was diagnosed and the breast care nurse told me not to cancel there was a very good chance my treatment would be finished and she will be right . What a perfect end to a difficult year - disney magic is the best medicine of all

I think I am there for a fact finding trip with some from the singles thread... we have a trip in works for 2009 that is major works (though others before then too ) I agree that it IS the best medicine.

 

[snappy]

Thank you for the link Laurabelle.

Also, Sha, we go september 13th for to weeks, we had already booked before I was diagnosed and the breast care nurse told me not to cancel there was a very good chance my treatment would be finished and she will be right . What a perfect end to a difficult year - disney magic is the best medicine of all

Welcome, Belle68!!

That web site is a good one, I read info there that really helped me when I was considering reconstruction. I highly recommend it.

September is a great time to go in my opinion. Are you doing free dining? Where do y'all stay?

I too find disney serves a purpose as treatment. We have said on this thread before that docs should write scripts for WDW trips. It is not just about the trip, but the planning is so fun.

We bought a small DVC resale contract last year. I love buying into something with a 35 year future. It was like an affirmation for me. DH did not quite understand it but thank goodness he went along with me.

I am calling to make my reservation this morning for next Memorial Day, 2 BR boardwalk view again. I am really looking forward to even making the call. Pretty pitiful isn't it?

I believe I will invite my DH to lunch today.

 

[snappy]

The girls and I arrived at 4:30 on 6/10 and had rented a compact car (saving $@ gas!) from National only to find a candy apple red PT Cruiser in the compact aisle! Off we drove without a hitch until the storm hit! It was horrendous. I almost pulled over but I could still see the lines and all the other drivers were being super careful so we pressed on and made it to Pop. Check in was a breeze, no lines and our room was ready. I made no requests and we were placed on the first floor in the 70's building. My oldest was thrilled, she plays guitar and loves old 70's rock. We had planned to go to Epcot for dinner but with the rain decided to hang out at Pop. We were on the DDP for these first 3 days but we also have the DDE card and I used both in the food court. My oldest dd and I shared the Parmesean chicken with pasta and alfredo and it was delish. Youngest got chicken nuggets and they had to have tie dye cheese cake. I bought a bottle of wine to take back to the room and wanted to note that many CA wines now have a rubber cork and are impossible (for me) to open with the cheapo wine opener they offer in the food court. I had to rely on the kindness of a stranger to help a damsel in distress! So pack a real cork screw! Mine was in my checked bags...After moseying around the shop I took my wine and the kids back to the room. I had checked our bags through with the DME tags, including hubby's luggage for when he joined us, and by now we had been there more than 3 hrs and no bags. I called and they told me to wait some more. The kids were exhausted, they had school that morning and my oldest took her last 2 finals. I told them just to sleep in their clothes. Finally at 10:30 when I called again they put me through to the luggage people who told me the storm caused MCO to close for a few hours and that's why there was a delay. Within 30 min. they delivered the bags. I did manage to find my toothbrush and jammies! Good night Mickey, wake me up in the morning!

Love your trip report so far. Love the details. Don't you love National. I need to reserva a car for our September trip.

I really like Pop. Was it crowded? We were in the 50's in Jan '06 in the end down close by the airline baggage stand, and boy was that close to the food court and bus stop. I would go back there in a heartbeat, but now my heart belongs to the boardwalk.

Can't wait until Installment #2!!!


Let us know when you speak to the insurance folks again. Thinking of you Laura.

 

[snappy]

Thank you each and everyone for your thoughts and wishes and prayers


I saw the doc who was fantastic, BTW. She did a very thorough exam (I think she should have bought me dinner.LOL) Anyways she said it is very small, round and smooth--unlikely characteristic of BC. She is still doing an ultrasound guided biopsy but feels it isnt BC. She couldnt tell me 100% but is fairly confident.
She told me to get going packing so now we are trying to cram 5 days worth of chores into one evening. We leave for the airport at 3am for a 7am flight. Yikes.

I can breathe and eat now.

Thank goodness!!

I sure hope you have a wonderful trip. I guess you have already left. We will be here when you return.

 

[snappy]

Just popping in quick to let you all know my mom is back in the hospital.
Not really related to the BC. She has a fever and fluid in her uterus (her GYN wasn't too surprised since some of the polyps were stuck tight). She had to have a CT to rule out bowel obstruction, then they were going to just send her home. I told them that was unacceptable, so her surgeon admitted her.

I was supposed to go home, but I cancelled my flight and we'll see what happens after she has some IV antibiotics. I can't leave if she is still having complications because she won't advocate for herself.

Thank goodness you are there to insist she was admitted. She has too much going on.

Hope this resolves quickly.

What a wonderful daughter you are! I hope my kids would be as caring.

 

[Pea-n-Me]

Parmesean chicken

LOL Great report. (We keep a corkscrew in our gargantuous toiletry bag.)

Hugs to all this morning.

Welcome, Bella! Glad you found us.

 

[DeeCeeSW]

GAGWTA!

Sorry to hear about your mom jackskellingtongirl! I hope her issues are resolved quickly and without too much discomfort.

Welcome Belle!

On to my roller coaster life, LOL!

Yesterday was a GREAT day, so, of course, today HAD to be not so great (law of averages, I guess?)

Chemo #2 did NOT go well at all. From the very start I had a feeling that something was going to be off. First, I had a different person put my IV in. It was uncomfortable and that feeling did not go away at all as time went on. I was not given enough time for my veins to “warm up” and I think the pain I experienced was a direct result of that (despite telling the nurse that one of the other nurses had JUST put the warming pad on me). Then the pre-meds were not dripping properly. Finally my first chemo drug was administered. Five minutes into it, I started to hiccup, then got this terrible heartburn feeling, and the next thing I knew, I started to swell everywhere and could not breathe. I was able to call for help (respond time was excellent) and was given Benadryl through the IV and then oxygen. It cleared up in less than 15 minutes, but, of course, everyone was completely freaked out and so, of course, I did not receive any more treatment today.

We met with my oncologist afterwards to discuss other options and he gave us three:

1) We could try the drug again but in a hospital setting, as I would have a 50/50 chance of having another reaction. Uhh, DONT THINK SO.
2) He could give me the drug Adriamycin along with the Cytoxan. Adriamycin is the drug that I told him I originally did NOT want, due to it possibly causing heart complications (my father died 2 years ago of heart-related complications from chronic heart disease).
3) We could try the drug Abraxane in combo with Cytoxan. However, Abraxene is normally used for women with metastatic disease (not me), and so the likelihood of my insurance accepting this combo would be slim to none. This drug costs THOUSANDS.

So I chose option #2, which NOW means going back to the radiology center to have a MUGA. As long as my heart functions normally and the blood flow is good, I can take the drug. Unfortunately, this means more radioactive material injected into me and more pics taken. Fortunately, the office was able to get me into the center for a scan tomorrow morning (after pulling strings with my insurance co. to get “emergency precertification).”

SO…my chemo regimen and schedule has changed YET again. I will be getting “AC” instead of “TC” and we are BACK to every TWO weeks, not three. The downside of this is I will have little to no recovery time so I cannot schedule my plastic surgery appts. in between (this slows down my 2nd breast surgery, aka, “exchange”).

The BIGGEST thing is that this particular drug may seriously irritate my veins, and because I opted NOT to put in a port, I may run into problems. My doc and my favorite nurse said they would try with the IV/vein next time (they are limited to one hand bc of the lymph node surgery on the other side) but if they had difficulty “getting a good vein,” I would HAVE to have the port or a PICC line put in for the next 2 treatments. This disturbs me, as it would mean having yet ANOTHER thing I did not want, and for only two more sessions, it just doesn’t seem right or worth the trouble, pain and/or discomfort.

The only GOOD thing about this change is that chemo will now end even EARLIER than before as I will receive the three treatments all within the month of July. This leaves August to recuperate, and will hopefully enable us to make a trip down to Virginia to visit family in August. Maybe I’ll have some hair by the time my DS starts school?!

So now my remaining chemo schedule has changed to July 1, July 15, and July 29th.

Needless to say, I am mentally and physically drained. I got very little sleep last night due to the steroids and now I have to take them again next week. I have NO idea how I will react to the Adriamycin. I managed to not get any mouth sores with the TC regimen but now there's a higher chance that I will with the Adriamycin. Guess I'll have to bring ice pops to suck on. I am frustrated by it all, but what can I do???!!!

 

[Disney lovin' senior]

Try not to worry. I had the adriamyacin and cytoxin mix. I was worried too, since I have mitral valve prolapse, but it didn't do any damage to my heart. It is true you will have fewer chemo treatments with these drugs, so that's the good part. I didn't have a port either, and won't kid you - it wears out your veins. But what's the alternative? I am a nine year survivor, and would choose that path again tomorrow - my last 9 years have been worth it. After all this time, even with the lymph node surgery, they are now using both arms to any blood tests, etc. I have. Unless you have swelling due to that surgery, they should be able to use both arms in the near future. Getting your hair back is a whole different trip. I have the straightest hair in the world - but when it first came back - CURLS! Didn't last tho, and now I'm back to the curling iron. Doesn't matter - you'll be fine, and soon counting the years of your survival. Prayers and good wishes go your way.

 

[snappy]

Disney lovin' senior. thanks for jumping in there for Dee Cee.

I am sorry the chemo was such a disaster.

You are hanging in there though. Good for you!!

 

[DeeCeeSW]

Disney lovin' senior. thanks for jumping in there for Dee Cee.

I am sorry the chemo was such a disaster.

You are hanging in there though. Good for you!!

Based on what I told you, is it at all possible that the cause of this reaction was due to the nurse not putting the catheter in properly? As I mentioned, it was doomed from the start. First my hand became swollen after she put it in--she noticed it herself, questioned it, but all she did was put a hot pack on it. Then the pre-chemo meds did not drip properly and she came back and had me reposition my hand--then the meds moved quickly. Then as I got up to go to the bathroom before the chemo meds were administered, all of a sudden there was blood in the tubing. She flushed it and then before the chemo meds, said "maybe I should take this out and find another spot, but I really don't think that's a good idea because you have good flow here, see (as she flushed with more saline and showed me movement). And then she added, "and you're not easy." I took that as her meaning it would be hard to find a new good vein so I said just keep it in. Is it possible that she essentially "missed the vein" and that once the Taxotere was administered, I had a reaction because the med was not going directly into my veins? Someone I know is suggesting this theory and thinks that I am not allergic to the drug as I was perfectly fine the first time I had it and had no side effects in the following weeks from it.

I obviously cannot go around the office and make accusations about this nurse and her ability to do her job properly without any logical hard evidence to back it up.

All I know is that I am now going to be switching to a med I do not want to take, but I have no other realistic options. On top of that I may be forced to get a PICC line if the nurses are not capable of taking me through 3 more treatments with the one good hand I have.

Any thoughts on this?

 

[DeeCeeSW]

Try not to worry. I had the adriamyacin and cytoxin mix. I was worried too, since I have mitral valve prolapse, but it didn't do any damage to my heart. It is true you will have fewer chemo treatments with these drugs, so that's the good part. I didn't have a port either, and won't kid you - it wears out your veins. But what's the alternative? I am a nine year survivor, and would choose that path again tomorrow - my last 9 years have been worth it. After all this time, even with the lymph node surgery, they are now using both arms to any blood tests, etc. I have. Unless you have swelling due to that surgery, they should be able to use both arms in the near future. Getting your hair back is a whole different trip. I have the straightest hair in the world - but when it first came back - CURLS! Didn't last tho, and now I'm back to the curling iron. Doesn't matter - you'll be fine, and soon counting the years of your survival. Prayers and good wishes go your way.

Thanks for sharing your experience and for your prayers and good wishes. Your post has put me at ease. Could you be more specific about your definition of "wearing out the veins?" Did you have severe pain or phlebitis (sp?) after treatments? Congrats on being a nine-year survivor!

 

[snappy]

I have no experience in this area. I am hoping others will chime in soon.

 

[Pea-n-Me]

Is it possible that she essentially "missed the vein" and that once the Taxotere was administered, I had a reaction because the med was not going directly into my veins? Someone I know is suggesting this theory and thinks that I am not allergic to the drug as I was perfectly fine the first time I had it and had no side effects in the following weeks from it.

I would bet that's exactly what happened. The benadryl is an anti-histamine which prevents an allergic reaction (which basically occurs when histamine is released from cells which causes swelling). So if the IV "infiltrates", the medication goes into the surrounding tissues rather than the veins, where it's supposed to go so it can be delivered systemically.

A few thoughts: a) an infiltration can occur spontaneously even when an IV is placed properly. (If I had a dollar for every time it's happened to one of my patients over the years, I could probably take a nice little Disney trip ); b) allergic reactions do occasionally occur with chemo, even with pre-meds (especially from the taxol family). And this is just my own personal opinion, but I'm a believer that things happen for a reason. So maybe you were meant to have a different regimen somehow. And lastly, you don't have to do anything. If you don't want a line, then simply refuse it (I did). Just know that you might have to go through issues with IVs at each chemo.

I know this is all a big PIA. I had all kinds of flies in the ointment as well (I bet most people do). So hang in there - as Dls says above, before you know it it'll all be behind you.

 

[MerryPoppins]

I have no experience either. All I can say is that I know you can show no sign of an allergic reaction to something for years and then suddenly become allergic. In fact, my allergist told me that you don't react to the first bite of a food that effects you. For example, you might eat shrimp many times before you finally have a severe reaction to it. Your body has to have a little there in order to build up an aversion (so to speak).

So I would think that you could have had a chemo treatment that went fine and then another that went wacky just due to a reaction to the drug. But that doesn't mean that the problem wasn't due to the other issue either. I don't know enough to answer that. But I am glad that you're doing okay.

I also wanted to say welcome to Belle! Glad you found us.

 

[Belle68]

Thank you all for such a lovely warm welcome, I am really enjoying reading your stories. This thread is wonderful it has made me realise there are thousands out there who have been threw or are going threw what I have been threw over the last 9 months or so.

When we go to WDW in september we will be staying at Allstars Sports, we havent got the dining plan but we have a couple of character meals booked. Crystal Palace for lunch (we do that every trip - DD and I are big fans) and Ohanas for breakfast.

Lots of love everyone, sending you all a

 

[laurabelle]

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

Dawn- I'm sorry to read about your reaction, it's so scary! Thankfully it was resolved quickly. I don't blame you for not wanting to try it again! FWIW I would probably choose the same cocktail. I have a very strong family history of early age (30's & 40's) fatal heart disease, so I understand your concerns about Adriamycin. Is Eprirubicin an option? It was only available in Europe when I did chemo, but I have read about people getting it in the states now. It is like Adriamycin, except it doesn't carry the same heart toxcity. My onc did a Muga scan prior to chemo and my heart function was and remains fine nearly 10yrs after doing A. I did have a port for chemo because I was already a very difficult stick and it made my life so much easier. I understand you don't want it, and since you don't have that many rounds to go, hopefully they can get it done without needing a port. I did Adriamycin and Cytoxan together and then Taxol separately. I was very sick on A/C, but new anti-nausea drugs have come out since then, Emend comes to mind. Regardless, I got through it and you will too. When do you take your steroids? This time, I was told to take all of my dosage in the morning. I still wake up at 4:00 a.m., but at least I can fall asleep. I actually opted out of steroids at the end of chemo, they drove me crazy. I asked my onc about it and she said it's supposed to help, but if the side effects outweighed the benefits I could stop.

I got my Humira yesterday! We took a short walk as I was waiting for my injection to warm to room temp. My kids were bumming because I had to give myself a shot and I stopped them and told them how grateful I am that there are shots and pills and things that will make me well. Chemo side effects suck! It was the hardest thing I have ever had to do, and this is nothing compared to that. But I am alive! I am so grateful. I will not complain! Bring on the drugs!

 

[Pea-n-Me]

I'm glad you finally got your medicine, Laura. Waiting to hear the next installment of your trip report.

 

[Pea-n-Me]

I just wanted to mention that the heart toxicity related to adriamycin is not heart attack; it's congestive heart failure. Adriamycin can cause a weakening of the heart muscle over time, which causes the pumping ability of the heart to lessen. (The incidence of this is very low [I was given the statistic of < 1% chance], especially now that they know more about it than ever.) It's still an extremely effective chemo agent for breast cancer.

Incidence of heart attack does seem to be more related to radiation, especially of the left breast area, which hits some areas of the heart more than radiation of the right breast area, which mainly catches an area of the lung.

Here's an article about it. http://patient.cancerconsultants.com/SideEffects.aspx?DocumentId=23145

 

[Sha]

I got my Humira yesterday! We took a short walk as I was waiting for my injection to warm to room temp. My kids were bumming because I had to give myself a shot and I stopped them and told them how grateful I am that there are shots and pills and things that will make me well. Chemo side effects suck! It was the hardest thing I have ever had to do, and this is nothing compared to that. But I am alive! I am so grateful. I will not complain! Bring on the drugs!

That is great about the meds! And I think that you telling your children that is awesome! Again.. you women here amaze me with your support and strength!!!!